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Celiac.com 04/04/2023 - Throughout this book (published one chapter per quarter on Celiac.com), we’ve discovered gluten centric practices in various vexing venues that constrain the lives of those dealing with gluten sensitivity. (For your convenience, here are links to previous chapters 1, 2, 3, 4, 5, 6, 7, 8.) In this chapter, we’ll discuss tactics gleaned from those interviewed, as well as an extensive restaurant primer featuring Chef Daniel Carpenter. As we’ve seen in so many illustrations in the book, having a strategy, language, and even a catch phrase (#glutencentric) empowers us to gracefully negotiate our gluten-free lives. Best Places to Travel When talking to my respondents, I asked them to tell me about their gluten free lifestyle when traveling. Stella (#21), for example, reports that her experience on Royal Caribbean cruise was successful; that the chefs are trained by the Culinary Institute of America, and know about cross-contamination. She felt safe eating the food they prepared. Lilly (#59) said the people at Disney were very accommodating. Vivian (#51) filled her suitcase before packing off to Ireland – just in case. While there, she discovered that Ireland is heaven for those with celiac disease. She noted, “The Catholic Church in Ireland has a separate line for the gluten free host!” Piper (#43) says, “In Italy, everybody knows what celiac disease is. Everyone is tested in elementary school.” It is reassuring to learn there are entire countries where we are safe to eat with celiac disease. On the other hand, Asian countries aren’t as safe. Lillian (#58) traveled to Thailand, Cambodia, and Burma on a guided tour. She handed the tour guide a card she brought with her explaining her food allergies. Unfortunately, he had “no clue about food allergies, didn’t know how to read the card, or what the ingredients were.” She notes further, “In Thailand, [wheat containing] soy sauce is in everything.” When attempting to go on a guided all-inclusive trip to Japan, Liza (#68) reports the tour company told her she could not go because it was impossible to ensure the foods would be gluten free. When traveling anywhere, some participants report they freeze food to take on the airplane and then put it in the hotel refrigerator upon arrival. Others use Teflon bags to heat food in toaster ovens. However, when traveling to Asia, meats and many other foods are prohibited upon entry and all food must be declared at customs. Many I interviewed said they simply quit traveling because it was just too risky to rely on other people to prepare every meal. It’s Better Than Staying Home This excerpt from Gluten Centric Culture first appeared in the Journal of Gluten Sensitivity Autumn, 2019 Before I was diagnosed, my husband and I traveled quite a bit. After being diagnosed and becoming more sensitive to gluten over time, I traveled less and less, and only to places I knew. But that changed when my husband gave me an “adventure-island hopping tour” to Greece for a graduation present that included two dedicated guides, all meals, and multiple adventures a day with a group of thirteen others. To prepare, we increased our workouts and added regular six-mile walks. We were excited to see Greece in this way! The tour company sent me a form, asking me to disclose food allergies. I investigated common Greek foods to see what they ate and how foods were prepared to get an idea of what might be safe for me to consume. I also watched videos on how foods are prepared and saw that a frequent practice is to grill meats and bread on the same grill. That was worrisome. Rather than bogging them with a list of what I cannot eat, I said that I was allergic to dairy and gluten and the best foods for me to eat were steamed poultry or fish, steamed vegetables, and fruit such as oranges or bananas. Steaming seemed to be the safest suggested cooking method. In interviews for my study, I had learned that Greece was on the top of the list of countries that people reported was the most challenging, so I was a little concerned about going. But I resolved that I wouldn’t let celiac disease force me to stay at home. I want to experience life! So, whenever I travel, I always carry a 3 oz. pouch of tuna, a Lara bar, and a sealed package of walnuts. (Note: these foods get through TSA in my carry-on every time!) It is amazing how many times that little meal has saved the day. I feel confident knowing I always have food with me. So even though I anticipated finding safe foods in Greece, I packed energy bars, pre-packaged walnuts and almonds, pouches of tuna, dehydrated vegetables, and jerky (easy to reconstitute into soup), just in case. I even brought my favorite chocolate. The welcome meal was abundant with lovely Greek foods served family style and I realized that nothing on the table was safe for me. Nearly every dish contained gluten, and I feared the salads were prepared on surfaces also used to slice bread. Foods that didn’t contain gluten, contained dairy. Feta cheese, Parmesan, and yogurt were abundant at every meal. A plate of chicken was presented near my plate, apparently for me, but it had cheese on it. I passed it down to the others at the table. Even though I filled out that travel form disclosing my allergies, there was nothing for me to eat at that meal. I have a great appreciation for the “art” of cooking, for flavor-pairing, for attaining the right mouth feel, and balance of flavors. The Greeks do too. In fact, the word epicurean (pleasure of food and drink) originated in Greece in the 15th century. In Greece, typical evening meals start at 9:00 PM and end around 2:00 AM, served with weak wine so people can eat, drink, and chat throughout the evening. Meals are a social event enjoyed regularly by immediate and extended family and friends. At our meals, every dish was paired with lovely sauces or accompaniments to enhance the flavors and texture. Our guide carefully explained how to eat each dish, whether to stir in the cheese or sauce, or to eat it on the side, what to dip where, and what to pair with what. Wines were selected based on the entrée. The culinary skills demonstrated in the dishes were superior. Food in Greece is revered and celebrated. While my companions were exuberantly eating, I sat hungry, remembering a time before diagnosis when I went through a “Greek Food” phase. I reminisced on the lovely taste combinations of Greek foods. As a guest in their country, the last thing I wanted to do was to suggest alterations in the way they prepared these beautifully balanced meals to accommodate my strict dietary requirements. I didn’t want to insult their “art.” I also didn’t want to come off as a demanding person requiring them to change century-old practices for my needs. Finally, I didn’t want to make a spectacle of myself in the group I’d be spending the next ten days with. I didn’t want to be that needy person. I sat hungry, while my fellow travelers raved about the flavors. I wanted to sneak-eat the pre-packaged walnuts from my purse, but I couldn’t discretely get the darn bag to open. Lunch the next day featured a similar array. This time, I pre-opened my walnuts and brought a banana. Tour participants noticed and passed various dishes to me. I told them I have food allergies and wanted to stay “safe.” The tour guides also noticed and asked me what I could eat, saying they would order anything I wanted. I said I was fine, that I wasn’t feeling that great and that the banana and walnuts were adequate. I really didn’t feel like exerting my needs and risking insulting anyone. After lunch, the two guides met with me privately and said, “You paid for food on this trip and we want to accommodate your needs. Please tell us how to do that.” I told them I’d think about it and get back to them. I felt overwhelmed with desperation and a little depressed. I was catching a cold from a direct-hit sneeze at the Parthenon, had a low-grade fever, and felt pretty bummed that I may be eating the foods I packed three times a day. The food in my backpack was intended for emergencies, not for every meal. My resolution to lead a normal life was evaporating, too. I was beginning to wonder if going on this trip was a big mistake, and thinking maybe it would be better if I had stayed home. Feelings of “food insecurity” set in, despite my suitcase of food. It was definitely the low-point of the trip, likely magnified by the fever. To trust people you do not know, whose language you do not speak, who have never heard of celiac disease (and once they have, think it is shocking that anyone can be that sensitive) daunted me. And because we’d be travelling to different places every day, I’d have to trust different cooks to judge my needs as credible. The thought of this, especially when witnessing how much gluten was present in every dish, caused me to have a great deal of anxiety about becoming cross-contaminated, no matter what I ordered. I’ve worked in big kitchens with multiple cooks, and know that getting meals on the table requires “rote cooking” skills, often in a frenzy during peak times. Disrupting that assembly-line rhythm when trying to serve a lot of people causes problems. Old habits kick in, and cooks forget about the special requirements in their haste. Food is “glutened” without a thought because that is the way it is always prepared. It is not necessarily a reflection on the cook—they are simply doing what they do to get hot, tasty food on the table. Knowing this, I’d rather go hungry. Cross-contamination in one meal by just a speck of gluten could ruin my trip and make me miserable for weeks. It was a real dilemma. For years after being diagnosed, my husband and I didn’t attempt group-trips that required others to prepare my meals. Rather, we’d stick to American cities and finally branched out to Europe once or twice, finding grocery stores to purchase suitable foods. We had lovely picnics in scenic places. Occasionally in restaurants, I would present my “dietary restrictions card” in the language of the country, and to my relief, usually received safe meals. But something about Greece was different. In most countries in Europe, gluten intolerance is well known. Here, it seemed obscure. In fact, I learned that the Celiac Society (a celiac disease awareness and advocacy group) only had a presence in Greece for one year. As a result, celiac disease is virtually “unknown” in Greece. I thought about the “raw ingredients” contained in the two meals we’d had so far, and determined that zucchini, green beans, potatoes, carrots, chicken, or fish were regular fare. Thinking most restaurants would have those foods I met with the two guides and gave them the card I brought with me explaining my dietary issues and what an ideal meal would be. Though their English was exceptional, I gave them the card in both English and Greek. They asked me what I would ideally like, and I said, “Let’s keep it simple. I’m happy to eat the same foods for lunch and dinner … so a steamed piece of fish or chicken with some zucchini, potato, and a carrot would be fine.” They said, “None of the restaurants have steamers. How about if we ask them to use a clean pan that has been washed free of grains to boil your meals?” I said, “That is a great idea! I would feel comfortable with that.” Over the course of the week, they called each restaurant in advance of our arrival, and I was presented with lovely plates of these foods. The guides had to explain these “safe practices” to each of the restaurants—a new concept for most of them (though one cook had a sister with celiac disease and understood completely). Many of the cooks wanted to add things to make it taste better, and the guide explained, “No, this is all she can have.” Sometimes, the restaurants didn’t have the foods I requested and the guide went to a grocery store and brought it to the chef. He was very discrete about this and no one on our tour knew he did it. I was deeply touched by his kindness. One time, the guide actually cooked my meal for me! Several of the chefs objected to boiling fish, while others, since they were given a few days notice, sourced a type that could be boiled. I would have suggested grilling it on a “clean” grill using olive oil, but in the interest of keeping it as simple as possible, I stuck with “boiled.” Simplicity seemed the best tactic. And since it was so different from how the chefs typically cooked, I felt safe that old habits wouldn’t kick in to cross-contaminate the foods. Others on the trip were very cooperative, no longer strangers, but fun travel companions who kept bread crumbs from flying on my plate when we were eating a picnic on a windy day, and who were careful to keep the bread basket away from my plate while sitting at the table. I sat on the end of the table to dodge crumbs, and to have access to the waiter if I needed to – though I didn’t – the guides did all of the interfacing for me. When everyone else stopped for a gelato, the guide handed me a banana or an orange. My gratitude for the meals they prepared for me influenced the way the others viewed my meals – with appreciation that the guides and restaurants were so accommodating and cooperative. The experience forced me to come to terms with my insecurities about speaking up, my food anxiety, and the reality of my limited diet. I learned a few lessons too. For someone as outspoken about celiac disease, sometimes my own timidity surprises me. I realized that I had allowed myself to fall into the absence of agency ideology by being shy about asserting my needs. As a foreign traveler, I didn’t want to be a bother or make the entire trip focused on my food requirements. An extensive study conducted on adults with celiac disease (Peniamina, Bremmer, Conner, & Mirosa, 2014) found “the main qualities seen as important for coping with allergen-free eating were assertiveness and organizational skills” (p. 943). Assertiveness, they found, is paramount to ensure the person with allergies conveys his or her needs to avoid risk-taking behaviors. I admit that I did not initially assert myself, and it was only because of the guide’s insistence that I was given suitable meals. However, eating is a fact of life, and it comes up at least three times a day, so it has to be dealt with. Assertiveness means being confident enough with yourself to ask for your special needs to be met, or to bring foods for yourself and eat them openly. It doesn’t mean being demanding or rude. It means simply stating the facts and asking for cooperation. Assertiveness would have meant that I initiated that private conversation with the guides, rather than the other way around. Both guides said I was too polite, and that they wanted to help me. They said if I had been demanding, they still would have helped me, but reluctantly. I really didn’t want to be a problem, but in the end, I did have to eat. It feels like walking a tightrope to find that happy medium to be assertive, firm, friendly and respectful, all at the same time. It is a social skill worth practicing. Even though they accommodated my needs, the meals required supplementation. I was glad I had high-fat bars and nuts with me. Several things contributed to my successful trip. I came home un-contaminated, and didn’t lose much weight! (By contrast, my fellow travelers complained about gaining weight because the food was so fantastic, and isn’t that a sign of a great trip!) I ate my bars and nuts for breakfast. I wouldn’t have come up with the idea of a “boiled meal” on my own, but I worked with the others to find a solution. The guides, who had never heard of celiac disease before, did some research between day one and our meeting. They learned from reading the Internet about safe practices. I am grateful they proposed the “boiled meal” idea. The guides’ cooperation was key to a successful, pleasant trip. The guides also coached me on what would have been a better way to write my card. Based on their suggestions, here is what it now says: I have celiac disease and am allergic to gluten (wheat, barley, rye, spelt, oats); dairy (cheese, milk, butter, yogurt); coconut, palm, and pine. Would it be possible for me to please have fish or chicken boiled or steamed with vegetables (with no added sauces or condiments) served with potato, beet, turnip, or rice? It is essential that foods prepared for me have not come into contact with gluten-containing grains or dairy. Please boil, pan fry (with olive oil), or steam my food in a pan that has been thoroughly cleaned from any residual grain. Thank you. Was it better than staying home? YES! I was really proud of myself for having the courage to travel again. My planning coupled with the compassion of the guides provided me with the trip of a lifetime. The Letter In addition to a card to hand a food server, it is a great idea to get a letter from your doctor on official letterhead that says you have celiac disease or gluten intolerance, and that you must follow a strict gluten free diet. You never know where you might end up while travelling. For example, if you were checked into a hospital, the medical letter would instruct the staff what to feed you. It is important to ask your doctor to write what you can eat, rather than listing all the foods you cannot eat. For example, you might ask the doctor to write that you should stick to a diet comprised of lean meats, steamed or lightly stir-fried vegetables, fruits, nuts, etc. This way, when taking it to a kitchen, the staff knows what to make for you. I keep a digitized copy of my letter in my purse on a USB drive, and have a printed copy with me whenever I travel. It has also helped me keep food that would have otherwise been tossed as I go through security in airports. RESTAURANT PRIMER After explaining her gluten free needs, Ruth (#69) describes how her companion mocked her in front of the server and said, “Give me all of her gluten! Make mine ‘normal’” he said, thereby undermining Ruth’s needs and making her order seem “abnormal.” Should Ruth point this out to her friend? If it is a close friend (or spouse), it might make sense to discuss how his comment undermines the severity of her needs. He may not realize that his joke is having a negative effect. In fact, these scenarios happen frequently when we go out to eat which is what prompted this Restaurant Primer gleaned from the wealth of information shared by study participants. In order to understand the restaurant’s perspective, this section includes insight from a prominent Chef, Daniel Carpenter. We discussed day-to-day restaurant experiences of interviewees at length in Chapter 5. This section takes us from the “front of the house” where we sit and eat, to the “back of the house” where food is prepared. Every step of the way is fraught with the possibility of errors being made. The following will attempt to provide some guidelines so we feel like we can go out to eat. Nearly everyone I interviewed said that eating in restaurants was their number one issue. Many simply do not feel safe because of worries about food being cross-contaminated in the kitchen. We also dread having a confused or dis-compassionate server. We have every reason to be concerned. A recent study shows that one-third of foods labeled gluten free in restaurants actually contain gluten (Lerner, et al., 2018). This eighteen-month study asked 804 people to carry a portable Nima gluten detection device in various restaurants across the U.S. Five thousand six hundred twenty-four items were tested and 32% of the foods that were labeled gluten free, contained gluten (Lerner et al., 2018). This is likely because of cross-contaminating practices and because so many foods contain hidden gluten with confusing names. It takes a certain amount of expertise to read labels accurately, and unfortunately many restaurant workers lack this skill. Ordering Strategies Not quite as bad as Ruth described above, but never the less, a challenge—here’s a scenario that happens when I dine out with a friend. If I order the salad with no dressing, no cheese, no tortilla strips, and a piece of dry-grilled fish on the top. Inevitably, my companion orders that same salad, but makes different changes to the order. That shows comradery – eating the same foods is a subtle gesture of “togetherness.” But it usually results that I get some unusual combination of the two orders, with toppings I am allergic to. This has happened enough times that I have specific restaurant strategies. First of all, I try to order last. If the server starts with me, I now say, “Oh, I need another minute…” That way, the server takes everybody else’s orders first. Second, I arrange it so I am sitting on the end seat at the booth, or if at a table, I ask the wait staff person to come over to where I am so I’m not announcing my dietary requirements across the table. Third, I order discretely, so nobody gets the idea to change their order to what I am ordering, thereby causing the same confusion as mentioned above. Using this new strategy, more often, I get a meal I can eat. Let’s hear now from Chef Daniel Carpenter on “front and back of the house strategies.” Figure 9.1 [Licensed with permission from Cartoon Collections.] Front of the House – To Restaurant Patrons For this section, I interviewed Chef Daniel Carpenter from Crooked Tree Culinary who develops restaurant best practices for “back of house” (the kitchen). Insight to how restaurant workers fulfill the needs of the food sensitive helps us to communicate better to each other. Harmonious interaction with front of house workers (the serving staff) often determines success with the back of house fulfillment. Carpenter says, “I’ve been thinking more about the question of how diners can best present their needs at the point of ordering and it feels as though your message might center both on vocabulary and on self-advocacy. If a diner is fortunate enough to be speaking to a manager (or a seasoned server), the need for self-advocacy should be lower, because they will be interacting with a professional who understands how high the stakes are.” How do we ensure we have self-advocacy? Several suggestions come directly from participants in the study. For example, Hazel (#22) recommends using an app to find “safe” restaurants. She reads the comments of others before deciding which restaurant to choose. After a meal, she also provides feedback for others on the app. Just search for “GF apps.” Also, the Gluten Intolerance Group of North America has certified some restaurants, and a list of those establishments can be found at (gfco.org). Other participants suggest calling the restaurant in advance and speaking directly to the chef to work out the best thing to order. Many said they deliberately go to the restaurant during off-hours so their needs can be tended to with un-hurried staff. When eating outside of our home, we are empowering many who do not understand the severity of our disease to cook for us. Consider how much time and effort it has taken for us to fully understand the nuances of the disease and the foods that trigger reactions. For many, the list of foods we avoid expands the older we get and longer we live with celiac disease. We can’t reasonably expect a cook in a kitchen who is focusing on getting hot plates of different foods served to worry about the extensive list of foods we cannot eat. They would have to understand all of our allergies, read every label of everything they use, and know what the obscure words mean. Most people simply can’t do that. And consider the foods mentioned in Chapter 8 describing the able-body bias that have hidden gluten such as grocery store rotisserie chickens – it’s complicated! The best advice when ordering is to stick to naturally gluten-free foods like salad, vegetables, fruit, and unprocessed meat. Participants also said they always brought their own tamari or gluten free soy sauce so they knew they had a condiment they liked if ordering steamed rice and vegetables. When ordering, speak “restaurant talk.” Order something grilled “dry” if you do not want oil. If ordering from a menu, tell the server what you do not want. For example, if the salad’s description says it comes with shredded cheese and croutons, say you do not want the cheese and croutons. In fine restaurants, take a look at the menu to see what meats/proteins and what vegetables are offered. Then close the menu and after explaining what allergies you have, order the meat “dry” and the vegetable “steamed.” Carpenter suggests, “I would recommend including (in a firm but non-confrontational way) how the possible outcome of a failure could look.” You might say, “I have Celiac disease and if I consume gluten, I will become very ill.” Further he recommends not using the term “sensitivity” but rather say “allergy” or even “extreme food allergy.” “Leaving any gray area is a recipe for heartache.” Be very specific and practice what you’ll say beforehand. You might decide to say, “I have an allergy to gluten, (a protein found in barley, rye, oats, wheat, and spelt) and I need to be assured that my food doesn’t contain it.” I don’t advocate leaving the table and seeking out the server for a tête-a-tête because that might disrupt the flow of how the server takes orders. Carpenter says, “The case where problems might arise is where [restaurant] guests are dealing with a junior server or one who does not, or does not care to, understand the importance of respecting the guests' needs.” It’s a good idea to “test” servers before ordering a meal, just to see if they are listening. For example, order club soda with lemon before ordering food. If the server has listened and brings lemon (rather than the usual lime garnish with club soda), you feel more confident that they might get your dinner order right. If they don’t bring it with lemon, you know this server is not concerned about special requests. In this case, it makes sense to ask to speak directly with the chef or to the manager when ordering your meal. This is a delicate issue because you rely on the server to bring something safe for you to eat, and the last thing you want to do is to make them angry. Carpenter says, “Unfortunately, many servers do not have a solid relationship with the kitchen or simply are afraid to place modifiers on tickets because cooks often respond with hostility to any changes, especially during busy times. Here is where the self-advocacy comes in; guests (even though it might feel ungraceful) need to escalate to a manager any time there’s even the hint that they are not being heard.” Knowing this, you might say, “My needs are complicated. I’m really sorry, but I wonder if it might make sense for me to speak directly with the chef?” Even if you don’t end up talking with the chef, you’ve still made your point. When servers and staff try to accommodate your needs, thank them for taking care of you and speak to the manager to thank them for working with people with special needs. It is important to positively reinforce everyone involved. Back of House – To Restauranteers Carpenter has worked with many restaurants to ensure special orders are fulfilled properly. He says: The model I recommend creates a separate pathway in the point-of-sale ordering system whereby tickets that address specific dietary needs are printed on their own color or type of paper [and potentially sent to printers on portions of the line where specific food types are (or are not) prepared]. Of course, none of this means anything unless the server and manager are proactive in receiving and confirming with the guest exactly what needs must be met. That language will vary depending on the type and style of restaurant concept: a fast casual outlet that serves no shellfish will approach the scripting of that conversation differently from how a full-service fine dining restaurant will. Once the order has been taken and verified with the guest - ideally by the front-of-house manager-on-duty - and the ticket has been sent to the kitchen, I recommend mandating direct verbal confirmation between the front-of-house / manager-on-duty and the back-of-house manager on duty/chef. In my experience, most breakdowns occur when both the dining room and kitchen are very busy. The team is skimming the surface of orders/tickets [not reading them closely]. [Busy] times during most shifts [are] when the team switches into auto-pilot and sometimes makes both major and minor mistakes. Escalating every order containing special dietary needs to the shift leads, in their respective sectors of the operation, provides an invaluable double-safe. The final step is for the front-of-house / manager-on-duty to run the plate personally and to repeat the special need that has been met in the preparation of the dish. Many operators will resist the notion that the operation needs to come to a screeching halt and that a conversation between front-of-house and back-of-house has to happen, but the stakes here are so high that I insist on that exact sequence of events, even if it’s multiple times/evening and during rush periods. Operators who have experienced the pain of an order slipping through the cracks know just how much effort prevention is worth; those who have yet to experience that unfortunate event often fail to understand that it’s not a matter of if but one of when it will happen to them if they do not take proper measures. As we know, training and consistency are keys in every aspect of foodservice. Repetition in pre-shift meetings/ongoing training and in new hire seminars is critical to success, especially when it comes to the health and welfare of guests who have dietary needs to be met. Perhaps this information will help restaurants to develop best practices in their kitchens. What diet is right for us? What should we even ask for when ordering in a restaurant, to ensure our safety? Some said they chose to follow diets that completely eliminate bread such as the Paleo diet where one eats meats, above ground vegetables, nuts, and fruit. Many participants told me they were initially diagnosed with irritable bowel syndrome (IBS) and followed the Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols (FODMAP) diet plan, which are names for certain types of carbohydrates that ferment in the body and cause digestive disorders (Nanayakkara, et al., 2016). Avoiding foods with this type of carbohydrate eases these troubles. Lists vary, but according to Nanayakkara, fruits such as bananas, and blueberries are low while apples, pears, and cherries are high. Vegetables such as zucchini, carrots, and green beans are low, while snap peas, mushrooms, and asparagus are high. Grains such as brown rice and gluten free grains are low, while gluten-containing grains are high. Nuts are preferable to beans and alternatives are suggested for dairy. If you are still plagued with gas, constipation, bloating, vomiting, or diarrhea and you are following a gluten free diet, ask your doctor if you should consider the FODMAPs plan. Like everything, it takes trial and diligence to understand what works for you. Fixed Menu Formal Dinners If forced into a situation where there is no other alternative other than to sit with a plate of food in front of you that you cannot eat, such as at a banquet or a wedding where no provisions were made for your special needs, an alternative is to “fake eat.” I hate to admit this, and I think wasting food is terrible, but some social norms make it necessary to “pretend eat.” The “look like you are eating” tactic is well-known to anorexics – where you cut up food and hold it on the fork while talking, put it back and pick up another morsel and cut it up into little bits, and make a small pile. I learned about this technique in an Abnormal Psychology book in the discussion on anorexics and thought, this would be useful for those occasions that I cannot control. The food never enters my mouth. I’d rather go hungry than to take a chance on eating foods with ingredients I don’t know, and getting a reaction, and I also don’t want to offend anybody by rejecting the offered food. I use this technique sparingly, and less since I’ve become empowered after my Big Shift, but it is in my arsenal if I’m in a public “vexing venue” because it affords me agency to protect myself in an otherwise dangerous situation. My husband has my back at organized meals where provisions for my needs are not met. We have a system we call “plate and switch.” If I am with my husband at a business meal, I can usually do the plate and switch maneuver sometime during the meal. Here’s how it works: I sit next to my husband and start off with the “look like you’re eating” tactic. When my co-conspirator has eaten most of his meal, we switch plates. You’d be surprised at how easily this can be done and go unnoticed. Then, I can put my silverware on the plate in the “I am finished” position (and hope that the waiter has read the same etiquette book as I have) and my husband can finish eating my meal. He loves it – he gets two meals, and I love it because it looks like I’ve eaten like everybody else. Gluten Detection Kits There are several gluten-detection kits on the market designed to test foods on-the-spot. These can really ease the worry and some of the participants advised using them before consuming restaurant foods. These tests might be acceptable when dining with family and close friends, but it could also become a conversation diverter as dining companions inquire about it. Results occur after approximately three to ten minutes (depending on the test) and food can become cold during the testing process. Even though the dinner table isn’t the ideal testing location, these tests are invaluable to isolate hidden gluten in foods, pharmaceuticals, or cosmetics you use at home. This chapter has provided a smattering of survival strategies for travelling and eating in restaurants gleaned from the many interviews, and my nearly twenty years of living this lifestyle. The next chapter takes a look at the legal protections offered by the American Disabilities Act, and how changes in it could positively affect the lives of those with celiac disease. Jean’s Story – May I Have a Fruit Plate, please? My worst nightmare is going to a banquet where the food is pre-determined – known as a Fixed Menu. You never know what will be on that plate! Usually it is rubbery chicken in some kind of sauce with limp vegetables and dessert with whipped cream that won’t lose its shape in 10 years. Knowing that most of the time, there are pre-made fruit plates in the back for people on special diets, I usually flag down the server for my table and ask if one is available. Sometimes this backfires, when the food is served and the server bellows “WHO WANTED THE FRUIT PLATE?” Or, when everybody else is served and the fruit plate hasn’t found its way to the table and everyone is waiting on you to be served before eating. Very embarrassing. This always prompts the question “Are you on a special diet?” I say yes, and look down, hoping it won’t go further. But there’s always one who probes, and when you finally tell them, they inevitably say, “Oh my Aunt Sally is on a gluten-free diet. She bloats up like a dead fish when she eats gluten, what happens to you?” How do you politely divert the conversation? I have a number of conversation starters (How about those [fill in the favorite football team]? Did you see [fill in favorite streaming series] last night? What was the last book you read? Can you believe the weather we’re having?) One evening, I was at a dinner meeting in banquet room in a nice downtown hotel to discuss funding for a start-up. I quietly summoned the server and asked if they had a fruit plate, without dairy (since they often come with cottage cheese or yogurt). He said they had a few back there, and he would get one for me. I thanked him, and rejoined the conversation at the table. Servers arrived with huge trays with plates covered with metal lids. They were presented to each of the people around the table and the lids were removed with a flare. The waiter forgot about my request and huffed off with the plate he had just served when I reminded him of the fruit plate. Underneath the metal lids, guests found rubbery stuffed chicken, with a mysterious white sauce, limp broccoli, and parsley as a garnish. After a while, my fruit plate finally arrived. I was hungry. It was beautiful and had slices of cantaloupe, honeydew, strawberries, blueberries, a bunch of red grapes and wedges of orange. The others at my table eyed my colorful fruit plate enviously. I ate the cantaloupe and honeydew. I looked at the grapes – how does one eat grapes still on the stem at a dinner? I decided since they were still on the stem, to pick it up and pluck them off with my fingers. The grapes felt grainy to my fingertips. I looked more closely at them, and noticed dirt on them. They were not washed! I wondered if I could discretely wash them in my water glass… and decided there was no way to do that without looking really weird, and calling attention to myself. I put them back on my plate. I continued participating in the conversation around the table about fund raising for entrepreneurial ventures and cut into a very large red strawberry. Out popped a surprised, live green worm! He was about an inch and a half long and a little chubby. He had little green antennas and beady black eyes. He looked around – wondering what happened to his home! I obviously couldn’t eat the strawberry – and really didn’t want anyone at the table to notice the worm. I had lost my appetite anyway, and started feeling sorry about ruining the worm’s home and blowing his cover. I pretended to eat the rest of the meal, and gave the plate back to the waiter as soon as he came around. The next month, when I attended the same dinner for the same group, and ordered the same fruit plate, the strawberries were sliced. Sometimes, even with all of our conversations, precautions, and strategies, things just don’t work out. It’s part of living with food sensitivities. Discussion Questions: What are your most successful travel strategies? What restaurant strategies do you deploy in order to avoid consuming gluten? References in Chapter 9 Carpenter, Chef Daniel. Crooked Tree Culinary. https://www.linkedin.com/in/danielkcarpenter Lerner, B., Vo., L., Yates, S., Rundle, A., Green, P., Lebwoh, B. (2018). Gluten Contamination of Restaurant food: Analysis of Crowd-Sourced Data. The American Journal of Gastroenterology, 113, S658-S658. doi: no doi. Continue to: Gluten-Centric Culture: Chapter 10 - Taking Action–It's the Law! Back to: Gluten-Centric Culture: Chapter 8 - Empowering Language

Celiac.com 01/12/2023 - This is a continuation of the book Gluten-Centric Culture that is being published each quarter on celiac.com. For your convenience, links to previous chapters can be found on alternativecook.com. When you try broaching a discussion about gluten-centric “truths” with your loved ones you may discover it’s not something they care to discuss. Our relationships with partners and family members are complicated with layers of memories and levels of deep-seated feelings. Few of us navigate our familial relationships with skilled communication, and many of us lack tools to even have constructive conversations. Having language emboldens us when we face the gluten-centric cultural constraints discussed in this book. It helps us to understand what is going on, to broach the conversation, and to point out “truths” that no longer work. Rather than being baffled or shut down by social encounters, try having the conversation, particularly with the ones you love—because they are worth it. Books provide ideas and tools with no guarantees on the outcome. It takes determination to cultivate relationships and to negotiate agreements. In previous chapters, we talked about the cycle of change from diagnosis to transformation. As you enter into the Big Shift (Chapter 6), working toward transformation in Chapter 7, you’ll become more confident with how to navigate situations. You’ll understand that these challenges in various “vexing venues” (Chapter 3) are part of the process. As life events perplex you, you’ll go in and out of the limbo stage testing and re-testing new “truths” (Chapter 6). You’ll even be able to say to yourself, “Oh, this situation triggered me to go into limbo. Now I need to come up with a new resolution.” After every situation, we get better at handling it. Once we enter into a new state of homeostasis, often we also transform our identity. This is the stage when our new “truths” are locked in and we “live it” (Chapter 7). We aren’t asking for acceptance, we aren’t defensive about our dietary choices, and we command respect. The benefit of a book like this one is that you’ll now be aware as you go through these phases, and it will give you more confidence. So will having new language and a new catch phrase. A New Catch Phrase Feelings of being left out or isolated because of a special need that prevents a person from being part of the mainstream are partially due to the fact we have no language to describe this phenomenon. Similar to how Tarana Burke (Burke, 2006) coined the hashtag #metoo to signify sexual harassment, and started a movement of no tolerance, we need a catchphrase to “call out” gluten-centric practices. These phrases sometimes evolve organically via social media; other times, it’s the consequence of a few passionate people finding words to name a common struggle. Many words or phrases of this nature have entered mainstream language such as: catch-22 coined by Heller (1961) meaning a no-win dilemma, groupthink coined by Janis (1982) meaning blind conformity, litterbug coined by McKeon referring to those who litter (McKeon, 1979), and meme coined by Dawkins (1976) referring to encapsulated concepts conveyed in social media. Other popular hashtags include: #sandiegoonfire to bring attention to a local fire; or others to share feelings and beliefs such as #love, #picoftheday, and #followme. My nation-wide study reveals that Western culture and language is gluten-centric, causing many who avoid bread to be suspect. I’ve pointed out how gluten-containing foods are part of our lexicon – “our daily bread,” “as great as sliced bread,” “breaking bread together,” etc. My work also points to the fact that media infractions perpetuate this belief (Chapter 1, Chapter 2). Awareness and language to describe the situation may enable conversations by those “othered” in order to experience more compassion and understanding from family and friends, possibly leading to altering gluten centric-related rituals (Chapter 5). Once developed, the catch-phrase would need to be published and promoted in popular media in order to become part of the normal lexicon used to describe when someone feels the effect of being on the outside of cultural norms. Let’s call out these situations with #glutencentric. When someone is engaging in attitudes we’ve previously discussed such as I-know-best, or expressing gluten doubt – we can respond by saying, “You probably don’t mean to, but you are being #glutencentric.” That will point out ways our culture is built on gluten-centric traditions, and hopefully will encourage more awareness and compassion. We can use #glutencentric to explain our behavior in tricky situations. The current vernacular when someone with celiac disease is poisoned with gluten is, “I got ‘glutened.” The hashtag #glutencentric derives from that – illustrating our need to take precautions to dodge cultural norms that sabotage our health. When we visit someone where we’ll be cooking in their gluten-containing kitchen, #glutencentric would explain our need to wipe down surfaces and cook in a separate place using safe utensils. #Glutencentric would encapsulate in one word why we don’t go into bakeries, kitchens, or pizzerias where gluten filled flour dust is in the air, and don’t eat foods at potlucks. Let’s say it catches on, and a friend asks you to come over and cut out Christmas cookies, you can say, “That’s #glutencentric, let’s make divinity instead!” In one word, you’ve encapsulated the lifestyle, it’s non-negotiable because it comes with a set of meanings, and you’ve suggested a naturally gluten free alternative (that still fits the holiday genre). Having a word to encapsulate this situation would entitle us to be included, but not expected to eat. For example, Liza reports, “My friend told me she had a dinner party of all of her friends and didn’t invite me because she didn’t know what I would eat. I told her, ‘Invite me. If you don’t, I feel left out, and we are letting the disease win. I want to be included in social engagements, so please invite me and I will bring my own bowl of food.’” Her friend said she wished she had thought of that beforehand. If Liza and her friend agreed on the concept of #glutencentric, it would have been socially acceptable for Liza to be invited to a dinner party and to bring her own bowl. Liza went on to say she felt she needed to “train” her friends on how to keep her safe, but engaged. This way, everybody wins. Having a catch-phrase to summarize the cultural constraints is empowering. When confronted with a snarky family member trying to push “a little” on you, you say, “That’s #glutencentric!” It will, in time, come to mean that there isn’t any more argument or debate about your resolve, so stop pushing… In time, it will be a way for us to command rights. New Language Throughout this book, we’ve learned new language to describe cultural constraints that collide with having food sensitivities or celiac disease. With this new language, we are able to understand why we feel removed from the mainstream, and now can take steps to redefine “truths” and enlighten loved ones. Let’s summarize the new language revealed in this book. To recap, the cultural constraints identified are: reluctant tolerance, gluten-doubt, able-body bias, “sorta” scientific, I-know-best, diet discretion, exclusionary etiquette, absence of agency, sacred bread, size surveillance, by the numbers, and yours, not mine. These cultural constraints “play out” in “vexing venues” such as at work, home, church, the medical arena, school, the bedroom, restaurants, (Chapter 3) around the extended family dinner table (Chapter 5), while travelling, and even in our own bodies as we struggle with the strife of illness (Chapter 4). Summary of Cultural Constraints in Book /* DivTable.com */ .divTable{ display: table; width: 100%; } .divTableRow { display: table-row; } .divTableHeading { background-color: #EEE; display: table-header-group; } .divTableCell, .divTableHead { border: 1px solid #999999; display: table-cell; padding: 3px 10px; } .divTableHeading { background-color: #EEE; display: table-header-group; font-weight: bold; } .divTableFoot { background-color: #EEE; display: table-footer-group; font-weight: bold; } .divTableBody { display: table-row-group; } Cultural Constraint Description Chapter Reluctant Tolerance "I understand people have gluten intolerance, and those people annoy me." 2 Gluten-Doubt "I don’t believe you are that sensitive!" 2 Able-Body Bias Where food served (anywhere) that does not consider those with sensitivities. 2 Sorta "Scientific" Basing opinions on sound bytes that don't tell the entire story. 2 I-Know-Best "My opinion about everything is "right" and you are "wrong." 2 Exclusionary Etiquette Etiquette rules/expectations that may cause peril for those with special needs. 2 Absence of Agency Where someone has no say, and when his or her special needs are not honored. 2 Sacred Bread Bread is a sacred food, both for religious sacraments, and at the dinner table. 2 Cultural Constraint Description Chapter Dietary Discretion When others are overly interested and judgmental about our dietary choices. 4 Sexist Scrutiny Sexist biases and expectations that may cause erroneous conclusions. 4 Size Surveillance The practice of surveying the size of women's bodies. 4 Living by the Numbers A preoccupation with weight, number of calories consumed, pounds lost, etc. 4 Cultural Constraint Description Chapter Yours, not Mine When family members deny they may have similar genetics as you. 10 Cultural Constraints in Action Reluctant tolerance – This occurs when someone says they understand the gluten free lifestyle, but their actions (and even words) indicate they are just putting up with our needs, but they really aren’t on board. People only cooperate when it is convenient for them. An example comes from Layla (#65), who described how she stayed in her mother-in-law’s house after telling her how sensitive to gluten she was. The mother-in-law acted like she would cooperate, but when Layla went into the kitchen the next day, the mother-in-law was baking cookies, and flour dust was all over the kitchen. It forced Layla to move her food to the bedroom. She limited her time in the kitchen. The mother-in-law appeared to be cooperative, but reluctant tolerance reared its ugly head when the mother-in-law decided she wanted to bake cookies, come what may to Layla’s health. Reluctant tolerance and gluten doubt often go hand-in-hand. Gluten doubt – Occurs when someone doubts our need to avoid even the tiniest molecule of gluten. Some even go to the extreme to find research to refute your claims that gluten in any quantity can be deleterious to your health. For example, when my mother said, “Oh it can’t be that bad, you must be exaggerating,” she cast doubt on my announcement that I had celiac disease and couldn’t eat gluten. Granted, my mother was on in years by the time I was diagnosed, and the thought of such a drastic dietary change was hard for her to comprehend. Also, her comment might have been to mitigate my edict to stop gluten all-together. Mom’s always want to make things a little better, don’t they? Because she was my mother, and I am conditioned to listening to her and learning from her, I doubted my resolve. She holds a lot of power over me and my decisions. She taught me what to eat from the start. If she doubted my gluten restrictions, I had to consider it. Was I over-reacting? Another example of gluten-doubt comes from Grace’s (#17) husband’s reaction (Chapter 2). Recall that he searched the Internet trying to find evidence that people with celiac disease can eat some gluten. Or Stillman (2016) who solicited her husband to ask his gastroenterologist friends to find research that gluten consumption was acceptable for her daughter with celiac disease. Denial is one of the steps to ultimate acceptance (Chapter 3, Chapter 6). Gluten-doubt is perpetuated in the media with “gluten” being the butt of jokes, causing those who hear them to question the severity of celiac disease and the need for a gluten free diet (Chapter 2). Gluten-doubt occurs when someone doubts the need for a gluten free diet. Many people I interviewed reported their spouse or family members felt they were “too restrictive,” indicating the gluten-doubt attitude. For example, Dustin (#46) said, “My wife thinks I’m too strict and paranoid.” Yet, he had just described to me how sick he was, how it took years to be diagnosed, how doctors disagreed about how to interpret the antibody blood test in order to finally diagnose him, and how he learned by trial and error just how restrictive he had to be in order to regain health. It’s hard not to wonder how his wife missed the struggles he endured. She eats gluten regularly and goes out, leaving him behind, enhancing his feelings of isolation and alienation with the disease. As his partner, her gluten-doubt makes it extremely hard for him to live harmoniously because of her lack of compassion. It would be nice of her to try to “walk in his shoes,” a little. Able-body bias assumes everybody can consume everything. Able-body bias occurs when accommodations are not contemplated for those with special needs, such as when gluten is added to foods that wouldn’t normally contain it or when restaurants do not have anything on the menu suitable for those with celiac disease. The able-body bias is dangerous because it plays out in all of the venues and can cause inadvertent cross-contamination. Some people I interviewed shared surprising things that contain gluten. For example, margaritas can contain gluten when bars add beer to their recipe. Another participant told me that some glue on tea bags can contain gluten, as can glue in packaging and to stick envelopes. Whole baked chickens can contain both gluten and dairy as do some deli meats. Packaged “fake crab” can contain gluten, as can the caramel color from soda pop—which caused two participants to react. Reusable straws can be made of gluten-containing pasta. BBQ pork can contain barley malt, used to make the meat appear glossy. Roux to thicken soup is often made with flour. Brown rice syrup and bouillon can contain gluten. Hash browns can also contain gluten because flour is sometimes used as a binder to hold them together. I have taken the same brand of probiotic/prebiotic for years. I recently bought more, and though the labeling changed, I didn’t think to look at it. Then I started having “glutened” symptoms. The product now contains maltodextrin. That’s a controversial ingredient – some do and some don’t react to it. Apparently, I do. When I quit taking it, the symptoms went away. Agar is high in iodine, as is seaweed such as the nori used to wrap sushi. Those with dermatitis herpetiformus need to know that iodine can trigger a reaction. Here’s one that really surprised me: scrambled eggs. In some restaurants, they add pancake batter to the scrambled eggs to make them fluffier. These are all examples of able-body bias – hidden poisons to some, assumed to be safe for all. Pharmaceuticals are another place where there can be hidden gluten in the drug binders. Some of the ingredient lists on over-the-counter and prescription drugs list “starch” as a binder. These binders vary from lot to lot depending on what is available or least expensive. There are websites that list drugs that are “safe,” but the best way to be sure is to do an Elisa test on any new prescription. This is costly – the tests are expensive – and medicine is wasted conducting the test. This is another example of able-bodied bias because the pharmaceutical companies do not disclose whether a drug contains gluten. Cross-contamination can happen anywhere. For example, when going to the ice cream shop, if one ice cream contains gluten, they may all be contaminated, unless the store has special practices to clean scoops in between dips. Some respondents reported that ice cream contains wheat-based thickeners not disclosed on the label. Frying oils in restaurants can also be a source for cross-contamination. If cooks fry gluten-containing foods in the same oil they use for French fries, the fries are contaminated. And in the deli, the meat slicer must be cleaned between slices to prevent cross-contamination. Safe practices have to be followed to ensure our safety. I witnessed a chef splashing water from the back burner pasta pot on the front burner grilled fish. This is an example of how easily foods are cross-contaminated. It’s imperative to observe as much as possible when you go to a restaurant. For example, I observed a server “stir in” a drop of sour cream that spilled into the guacamole at a popular chain. This little bit of dairy could poison someone with a dairy allergy. These examples illustrate able-body bias as well as how cooks in a kitchen do what they need to in order to “turn tables” quickly. A restaurant kitchen is a melee of activity, and special requests slow the line. The unfortunate reality is that we just can’t be too careful! To mitigate risk, some participants shared their strategies for staying safe, such as bringing their own food to group gatherings or keeping emergency foods with them at all times. At a potluck, if they planned to eat the food, some participants ensured they were first in line, so serving spoons weren’t cross contaminated. When going out for a “beer” with friends, many participants recommend ordering hard cider because it tastes good and looks like beer. There are several good gluten-free beers available on the market. And best of all – Oreos have a gluten-free version! Many participants recommended them. Doughnuts were the food that came up as the most missed food. There are some packaged versions, and several lucky people mentioned bakeries in their towns that carried fresh gluten-free doughnuts. “Sorta” Scientific refers to the propensity to spout off “scientific” data without telling the whole story, often misleading the listener to come to an erroneous conclusion. It also refers to scientific controversies that confuse those trying to follow a gluten free diet. These sound bytes cause us to draw conclusions from fragmented information, such as in a clickbait headline. Let’s consider the oat controversy that has become a hot topic in celiac circles. Are oats GF? It depends on who you talk to. I met a gluten free oat farmer at a convention who told me his oats are raised miles from fields of gluten-containing grains to prevent intermixing with the oats. It is not an exact science, he explained, because he cannot control the wind that blows seeds from other fields. Furthermore, his oats are processed in a gluten free plant. Oats are touted as a health-providing food because they lower glucose and cholesterol levels (Smulders, et al., 2018). And one study confirms that those with celiac disease can eat about a cup of oats a day without a problem (Hardy, Tye-Din, & Stewart, 2015). Many who are diagnosed with celiac disease say they can eat oats, while others suffer with celiac-type symptoms when they consume them. Perhaps it is because the oats they are eating are cross-contaminated, because the manufacturer didn’t grow them in fields far from gluten containing grains, or because they were processed in a facility that also processes gluten. We shouldn’t have to ask these questions. Theoretically, if the oats meet the government guidelines of under 20 ppm criteria, they should be safe for us to eat. I really wanted to incorporate oats into my diet. I missed eating my favorite oatmeal chocolate-covered raison cookies. I bought the bag of oats from the GF oat-farmer, rationalizing the $12 price tag because of the extremes he took to ensure the oats were safe. To do a real test, I quit eating all grains, including gluten free grains for three months as a “cleanse” so that I could re-introduce those lovely gluten free oats. This wasn’t easy! Grains give a certain “fullness” that is lacking when omitted from the diet. In time, I got used to the new “fullness” that comes from eating other foods. Finally, three months later, I made my favorite oatmeal cookies. I took only one bite (and didn’t even eat any of the dough as I made them!). Since my disease takes ten days to fully manifest, I waited. Ten days later, I broke out in that old familiar dermatitis herpetiformus rash, and it was not a small outbreak! Clearly, I cannot eat gluten-free oats. I don’t know whether I reacted to gluten in the oats, or to something called avenins, but I do know that the sorta scientific data wasn’t true for me! Since my oat experiment, I learned that some people may have an intolerance to oat avenins (Arentz-Hansen, et al., 2004); while another contradictory study with only two participants concluded that oat avenins did not cause reactions in those with celiac disease (Hardman, Tatham, Thomas, 1999). Which should I believe? A 2015 study with 73 participants with celiac disease found that six people reacted to the avenins in oats (Hardy, Tye-Din, & Stewart, 2015). Whether to consume oats is controversial and sorta scientific because of the conflicting results. Rather than going to the doctor for more tests, I decided to continue eliminating all grains from my diet. I felt better than ever during that three-month cleanse, when I didn’t consume any grains. Contradictory studies show how the sorta scientific assertions can really cause confusion. I-Know-Best is the attitude conveyed by others that you really don’t know what you are talking about when you say you need to follow a gluten free diet, but rather I-know-what’s best for you. We experience this in every venue, as shown throughout the book. The most alarming place I saw this was in a rehabilitation facility where my mother went after having her knee repaired. Though my mother was never gluten free, I asked them (on my own behalf for future reference) if they would honor a gluten free diet request and learned they wouldn’t without a “dietary prescription” from a medical doctor. They explained that the gluten free diet was very difficult for them to adhere to, and without specific doctor’s orders, they wouldn’t comply. Furthermore, a staff member at the facility informed me that most people following the gluten free diet were just doing it because it was the fad. Wow! How safe do you think you’d be with her preparing your foods? That’s I-know-best folks! Diet Discretion refers to the culturally-driven propensity to scrutinize each other’s diet as discussed in Chapter 4. It can also refer to the challenge faced by others who strive to cook for us, trying to adhere to our dietary needs. This notion is perpetuated by some companies who advertise “ideals” and has infiltrated society as an acceptable practice and leads to size surveillance (discussed below). In the friends and family dinner table environment, Claire (#25) shares how she deals with the diet discretion demeanor. She says, “It is such a dilemma – either to resolve to only eat your own food, or to eat what others kindheartedly prepare for you, and risk that they do not know all of the hidden words in ingredients that mean gluten.” Elaborating, she says: It depends on the situation. I don’t want to be mean to somebody who is really trying. It is a lot better for me to thank them and appreciate them. Do you want to shoot them down so they never do it again? That's the question you have to ask yourself. I have never said, ‘Oh my gosh. I can't eat that. I might be contaminated.’ I have taken food and not eaten it, but you can do that quietly and subtly. You don't have to have a fit, and throw it in people's face. You can be subtle. You can thank them for the food and not eat it. On one hand we want to be polite, and on the other hand, we don’t want to be sickened. I once gave a friend a beautiful dried fig that I specifically chose for her as a treat. It was from a specialty store. She thanked me and out of the corner of my eye, I noticed she put it into her purse. Apparently, she doesn’t like figs, but she didn’t tell me that. She was very polite and accepted it with gratitude. I admit I’ve done the same. But, other times, I felt like I was lying when I pretended to eat foods I wouldn’t dare put into my mouth. It really feels disingenuous, and, frankly, it encourages behavior I don’t want to perpetuate. That’s why I announce to the people I regularly get together with that I will bring my own food. One group collectively breathed a sigh of relief, because their dietary discretion demeanor of trying to provide “clean” foods for me caused them stress. It is really nice to have someone else make something I feel safe eating. One of my friends bakes sweet potatoes, knowing they are one of my favorite foods. She carefully wraps them in aluminum foil so the oven doesn’t cross-contaminate them. I eat them and feel so grateful that someone has prepared something safe for me. I appreciate it when my sister uses a special pan to prepare foods for me, so I don’t become cross-contaminated by their regular fare. It makes me feel more included in the family when I eat the same foods as they eat. But when I go to a friend’s home who really isn’t particularly informed or interested (or perhaps is relieved they don’t have to worry about my needs), I either bring a dish to share and serve myself first, or I bring my own bowl. It is just safer that way. But these resolves go by the wayside when something like what Claire describes: I can tell you something nice that somebody did. My friend, a good friend of mine, one of her kids got married and I was not going to say a word, her hands were so full, and she was cooking all the food and everything for her kid’s wedding. My intention was just to bring food, tuck it in the fridge in the back, and warm it up and eat it later when I had time. Several days before, she said something about a platter and I didn't understand what she was talking about. Then she asked me to cover the platter and put it in the back so it would not get cross contaminated. I said, ‘Are you seriously cooking gluten-free too?’ And she said, "Well of course, you're helping, why wouldn't I?’ She went way out of her way to do that, she was cooking for 200 people, and she still thought of me. So that was pretty cool. Claire reports she ate the food her friend prepared, with no reaction. She felt lucky and grateful. These examples illustrate the different aspects of dietary discretion, which can have negative connotations when someone is scrutinizing what is on our plate, or positive implications when others are trying to adapt to our dietary requirements. The propensity to scrutinize each other’s diet is rooted in our need to nurture. Offering food is a way to show love and to ensure that those around us are satiated. Clearly, we want to encourage that behavior from our friends and family, and how we deal with dietary discretion is determined on a case-by-case basis. Exclusionary Etiquette refers to rules of etiquette that contradict what is safe for those with celiac disease, food sensitivities, or non-celiac gluten sensitivities. How do we deal with it when presented with gluten-containing food? I hosted a book club potluck at my home. A friend brought homemade banana bread with gluten, even though I sent a note out to everyone reminding them my home is gluten free, accompanied with a list of acceptable foods. It was awkward, because etiquette dictates that we accept foods that people bring to our home with gratitude. I really like this person and don’t want to ever offend her. But since I had sent out the note and felt that this specific group of friends had a lot of insider information about the tribulations of my gluten free life, I said, “Oh, you can’t bring that into my home. I’m sorry.” And she said, “I’ll keep it out of your kitchen and just serve it on the coffee table.” Well, I can be poisoned just as easily from cross-contamination on the coffee table as in the kitchen. I had to ask her to take it back to her car. What a dilemma! I was having memories of the cleaning lady episode mentioned in Chapter 1. I didn’t know how to handle it. I thought about Liza (#68) in Chapter 5 who gave the gluten-containing gift back to her neighbor and then regretted doing that. What is the right answer? I’m not sure where the line is, but if it can contaminate you, you have to speak up. But if it is a gift that you can easily discard after the person leaves, it might be best, (even though it isn’t honest) to say “thank you” and tell the giver how much you appreciate the thought. After all, it isn’t it the thought that counts? Collectively, we have to change the rules of etiquette, so when we don’t accept food we suspect may sicken us, we can reject it without feeling like we are breaking social norms, or for fear we won’t ever be included in food-related gatherings. Absence of Agency describes situations where a person has no power in a relationship, causing them to be highly influenced by another. It manifests as the inability to act on one’s own free will or feeling the need to ask that particular person for permission to do something. For example, Ava (#7, Chapter 5) described how her mother likely had celiac disease, but continued to cook it and eat it because her father refused to eat a gluten free diet. Ava describes how her mother suffers from symptoms of celiac disease as a result. This illustrates an absence of agency on the mother’s part. If she had agency in the relationship, she would assert her needs and demand that her health concerns were prioritized. It takes courage because often we are confronting someone who intimidates or has power over us. Sacred Bread describes the cultural constraint that bread is a sacred food present at meals and ritual ceremonies. The most obvious application of this cultural constraint is with the communion host at church. This causes issues when going to church and not being able to participate in sacred sacraments. Another is the notion that a meal is not complete without bread on the dinner table (de Certeau, et al, 1998). Diets that omit bread are anathema to some, illustrating the cultural sanctification of bread. Size Surveillance – This is the propensity to judge our own and each other’s size as illustrated in Chapter 4 with our “diet” culture. It is perpetuated by companies who advertise “ideals” and has infiltrated society as an acceptable practice. I have a friend who always tells me, “I hate it that I’m so fat.” While I want to engage her to ask how she feels about it, what her plan is to fix it, and to encourage her, I don’t because she isn’t telling me to find a solution. She’s venting. But her comment causes me to discretely look at her body – something I wouldn’t normally do. I am compelled to assess for myself if she is really “fat.” This illustrates size surveillance. Her size at any given time shouldn’t be relevant to our conversation, but in fact, it is a regular topic. This seems to be true with groups of friends too. I have another friend who regularly east and drinks with her girlfriends to celebrate life’s occasions. Collectively, they also gain or lose weight throughout the year. When they are dieting, they bring lower-fat foods to consume at their gatherings, and when they are not, they enjoy higher-fat foods. Their body sizes go up and down throughout the year, and they regularly comment on it to each other. One said to me, “We’ve gained weight, so now we are on a diet.” Making dieting a team-sport illustrates size surveillance. They are all around the same age, and have individually been on and off of diets since their teens. As friends, this group is aware of each other’s body sizes. They know what size of clothing each other wears when “up” or “down.” They encourage each other while dieting, exercise together, and collectively celebrate successes. What happens when one member of the group stays thin when the others are on the thicker side, or vice versa? Would they be ousted from the group? Is being a uniform size a “condition of acceptance” in that group? Size surveillance and dieting is a major component of their ongoing discussions. Sexist Scrutiny – This illustrates the propensity of some doctors to treat women different from men. Details of this phenomenon are offered in Maya Dusenbery’s (2017) book entitled Doing Harm. In it, she points out that prescription doses are based on an average size white male and that women were often exempted from studies while in their child bearing years because of fears that hormonal changes would affect test results. Rather, tests were conducted on men and extrapolated for women. She reports that seventy percent women take a prescription while pregnant, and since these drugs were not tested on women, outcomes may be unpredictable (p. 39). She says, “often, women’s symptoms are brushed off as the result of depression, anxiety, or the all-purpose favorite: stress” (p. 3) when in fact they had West Nile virus, pericarditis, and a host of other illnesses that took several attempts before getting a viable diagnosis. Respondents echoed how it took multiple visits (and several misdiagnoses) to finally get the celiac disease prognosis. In addition to having to visit several times for a diagnosis, Dusenbery found that women wait longer in the emergency room with the same complaints as men. For example, women with stomach cramps waited sixty-five minutes compared to forty-nine minutes for men, to see a doctor. The same is true with women displaying heart related symptoms. She attributes this to sexual biases. Women in my interviews echoed similar sentiments about how they were treated in the examination room, and as they went through the diagnostic process. For example, Ruth, (#69) describes how one day she went to a gastroenterologist she had been seeing regularly for several years, without an appointment. She was actively suffering with a rash, stomach distress, constipation, and joint pain and when she called to try to get an appointment, the receptionist told her she’d have to wait two months. At her wit’s end with the symptoms – needing prescriptions to ease the agony, she decided to drive over and sit in the waiting room, hoping for an opening. She begged the receptionist to let her see the doctor. Eventually the doctor indignantly huffed into the waiting room and refused to see her. His comment implied that she was stalking him! He told her to make an appointment. She left humiliated, remaining desperate for medical attention. We need to be aware of sexist scrutiny if we are told we are symptomatic because of stress, anxiety, or hormones, so we can ask for other tests that may lead to a proper diagnosis, or find another doctor. By The Numbers – refers to excessiveness in setting physical goals for weight, food consumption, and even results on medical tests. This entails practices such as weighing food into approved portion sizes, or weighing oneself often, or setting “goals” to achieve desired numbers on medical tests. Someone who knows the number of calories they have consumed at any point in any days is enacting the by-the-numbers practice. Or if they weigh themselves every morning and record the number, and then “punish” themselves for being out of range, they are enacting the by-the-numbers practice. I once observed someone who was following a popular diet plan. I opened a bag of corn chips for us to enjoy before dinner. She asked me if I had a food scale. With it, she carefully measured out the number of grams that corresponded with one serving size of chips according to the nutritional facts printed on the bag. This is a by the numbers practice. When she finished the apportioned amount of chips (a surprisingly small amount), she then ate from the communal bowl. Together, we finished the bag! (What the bag deemed as 16 servings was two for us.) With regard to medical tests, Andreassen et al. (2015) reports that abnormal low-density lipoprotein (LDL) levels are common for those diagnosed with celiac disease. Many I interviewed were well aware of their “cholesterol” numbers. It’s no surprise. Commercials on TV inform us that we need to be aware of these numbers. Low density lipoproteins are part of the complete blood count routinely tested for heart disease. One can become obsessed trying to tweak out dietary fare or prescription doses to lower these numbers. Some patients are put on a quarterly trial, getting tested, and repeating until desired results are attained. This can cause a laser focus on the numerical outcome, rather than contemplating other lifestyle factors that could also affect the numbers. For those with celiac disease, many people I interviewed were very aware of their anti-giladin antibody levels. Anti-giladin antibodies are tested as part of the celiac disease diagnostic process (John Hopkins, 2020). Some reported that it took years to get their anti-giladin levels back to normal even though they strictly followed a gluten free diet. Knowing that it can take years to get back to normal is very important so that the patient and doctor have realistic expectations. It is also a great way to determine if you are inadvertently infracting. For example, after finally getting into the normal range, I requested the test again because I started having rash outbreaks and couldn’t figure out why. The anti-giladin number I worked so hard to get down had gone up! My doctor explained that it meant I had been infracting for a while. That’s when I discovered there was wheat protein in my hairspray. Respondents report disparity of interpretation by doctors when abnormal antibodies are detected. Some diagnosed that when only one antibody was in the abnormal range, it was “inconclusive,” while others were told that any abnormality indicated they had celiac disease. The diagnosis process varied greatly among participants. My doctor tells me we are limited by available tests and that the best “diagnosis” was if the symptoms went away with the elimination of it. The by the numbers practice is activated when we assess ourselves to the point of obsession using quantifiable standards. Yours, Not Mine – refers to the tendency for some family members to shun being tested for celiac disease. It is a “genetic” cultural constraint because it only applies to situations where family members may display symptoms but either refuse to believe a positive test, or refuse testing at all. Examples from Chapter 5 from participants include Emery (#45) who observed symptoms in her family and when she suggested they get tested, they accused her of “trying to get attention.” Or another example Naomi’s (#32) sister, waving the gluten containing food in her face saying, “It sucks to be you.” Both of these examples illustrate the yours, not mine stance, which will be discussed at length in Chapter 10. It All Makes Sense Now We’ve talked about ideologies, defining them as “taken-for-granted truths.” Throughout this book, we’ve identified the cultural constraints that keep coming up as we navigate social situations in various “vexing venues.” Awareness of these universal “givens” is the first step to change. Consider other social situations that were changed with awareness. From my study, I learned that people who find themselves on the outside of certain “taken-for-granted truths” experience conflict in various venues. We see a population that endures ridicule in the media, and exclusion such from meals and religious rituals, because ridicule (Freud, 1905/2009) and isolation (Smith, 2009) are two consequences when an individual operates outside of established norms. Recently, I explained the concept of this book to someone who does not have food sensitivities. Alluded she said, “I don’t see that people with celiac disease are ridiculed or isolated.” This is a perfect example of the response of those operating on the inside of a deep-seated “truth.” It represents how our struggles can be invisible to others. They laugh along with the jokes in the media (and admittedly, sometimes we laugh too). But, because they do not live with the repercussions, they do not notice. It is only when on the outside of a norm that one experiences the discomfort of ridicule that perpetuates social isolation. Understanding these cultural constraints and arming ourselves with strategies to address them can help us navigate challenging social situations. We talked about developing a catch-phrase to encapsulate the attainment of the Big Shift and identity transformation. Rather than saying, “I have celiac disease,” which may imply that we are still struggling with the lifestyle and symptoms of the disease, we could say, “Please don’t be #glutencentric” indicating we accept our lifestyle, and so should you. Forum Questions Above, we talked about memes and having language to describe our GF lifestyle with no qualms or apologies summarized in one word. I suggested calling out practices by using the hashtag #glutencentric. Do you think having a word to describe these cultural practices would help us gain more compassion? What situations can you think of where using #glutencentric would help? References in Chapter 8 Alice McKeon, coined word “litterbug” (1979, March, 2), Washington Post. Andreassen, O., Desikan, R., Wang, Y., Thompson, W., Schork, A., Zuber, V., Doncheva, N., Ellinghaus, E., Albrecht, M., Mattingsdal, M., Franke, A., Lie, B., Mills, I., Aukrust, P., McEnvoy, L., Djurovic, S., Karisen, T., & Dale, A. (2015). Abundant genetic overlap between blood lipids and immune-mediated diseases indicates shared molecular genetic mechanisms. Plos One, 1, 17. doi: 10.1371/journal.pone.0123057 Arentz-Hansen, H., Fleckenstein, B., Molberg, Ø., Scott, H., Konig, F., Jung, G., Roepstorff, P., Lundin, K., & Sollid, L. (2004). The molecular basis for oat intolerance in patients with celiac disease. PLos Medicine, 1(1), 84-92. doi: 10.1371/journal.pmed.0010001 Burke, T. (2006) Me Too. Retrieved from https://metoomvmt.org/get-to-know-us/tarana-burke-founder/ Dawkins, R. (1976). The Selfish Gene. Oxfordshire, UK: Oxford University Press. de Certeau, M., Giard, L., & Mayol, P. (1998). The practice of everyday life, Vol. 2. Minneapolis, MN: University of Minnesota Press. Dusenbery, M. (2017). Doing harm: The truth about how bad medicine and lazy science leave women dismissed, misdiagnosed, and sick. San Francisco, CA: HarperOne. Freud, S. (1905/2009). Wit and its relation to the unconscious. Overland Park, KS: Digireads.com, Neeland Media, LLC. Hardman, C., Tatham., A., & Thomas, H. (1999). Absence of toxicity of avenin in patients with dermatitis herpetiformis. The New England Journal of Medicine, 340(4), 321. No doi. Hardy, M., Tye-Din, J., Stewart, J., Schmitz, F., Dudek, N., Hanhapola, I., Purcell, A., & Anderson, R. (2015). Ingestion of oats and barley in patients with celiac disease mobilizes cross-reactive T cells activated by avenin peptides and immune-dominant hordein peptides. Journal of Autoimmunity, 56, 56-65. doi: 10.1016/j.jaut.2014.10.003 Heller, J. (1961). Catch-22. New York, NY: Simon & Schuster. Janis, I. L. (1982). Groupthink. Boston, MA: Houghton Mifflin. John Hopkins (2020). Blood Test: Gliadin Antibodies. Retrieved from https://www.hopkinsallchildrens.org/Patients-Families/Health-Library/HealthDocNew/Blood-Test-Gliadin-Antibodies Nanyakkara, W. S., Skidmore, P. M. L., O’Brien, L., Wilkinson, T. J., & Gearry, R. B. (2016). Efficacy of the low FODMAPs diet for treating irritable bowel syndrome: the evidence to date. Clinical and Experimental Gastroenterology, 9, 131-142. doi: 10.2147/CEG.S86798 Smith, G. (2009). Reconsidering gender advertisements. In M. H. Jacobsen (Ed.) The Contemporary Goffman. Oxfordshire, UK: Taylor and Francis. Smulders, M., van de Weil, C., van den Broeck, I., van den Broeck, H., van der Meer, I., Israel-Hoevelaken, T., Timmer, R., van Dinter, B-J., Braun, S., Gilissen, L. (2018). Oats in healthy gluten-free and regular diets: A perspective. Food Research International, 110, 3-10. doi: 10.1016/j.foodres.2017.11.031 Stillman, S. (2016). Why I hid my happy, healthy daughter’s medical diagnosis from her for as long as I could. Washington Post Blogs. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5J1X-0W31-JB4M-V2SC-00000-00&context=1516831. Yamamiya, Y., Cash, T. F., Melnyk, S. E., Posavac, H. D., & Posavac, S. S. (2004). Women’s exposure to thin-and-beautiful media images: body image effects of media-ideal internalization and impact-reduction interventions. Body Image, 2, 74-80. doi: 10.1016/j.bodyim.2004.11.001 Continue to: Gluten-Centric Culture: Chapter 9 - Travel Tips Restaurant Primer Back to: Gluten-Centric Culture: Chapter 7 - Individual Transformation

Celiac.com 09/29/2022 - The book Gluten-Centric Culture is the result of a nation-wide study of gluten-sensitive adults living with other adults. Previous gluten-related studies primarily examine children. This is one of few that focuses entirely on adult social experiences. As we have seen in earlier chapters, cultural practices make life difficult for those avoiding gluten at any age. The chapters have detailed how cultural constraints such as exclusionary etiquette rules make it challenging to both be polite and dodge gluten at the dinner table. Other cultural constraints such as able-bodied biases are illustrated when only gluten-containing foods are offered, and when special needs are not considered. We’ve seen how “gluten” is the butt of jokes, causing our requests to be mocked and often making us doubt whether supposedly “gluten-free” foods presented to us are safe to eat. In Chapter 2 and Chapter 4, we learned how some in the medical community aren’t adequately trained to correlate physical symptoms with gluten consumption, resulting in mis-diagnoses such as brain tumors, stomach cancer, or mental illness, illustrating the I-know-best attitude. We’ve seen how women in particular are often victimized by sexist scrutiny in Chapter 5. In Chapter 6, we illuminated the Disease Process and how a newly diagnosed person goes in and out of “limbo” as “truths” form, eventually evolving into a new homeostasis using new “truths” in every aspect of life. This ultimately leads to the final phase of the disease process called “transformation.” The present chapter expands the transformation stage, where a person with gluten sensitivities or celiac disease can press the “replay button” on scenarios that didn’t work before. Here, we apply the new awareness gleaned from reading this book, incorporating the language, breaking down cultural constraints, and living with a feeling of empowerment. A Gift for You Before getting started, I’m taking applications and will choose three people who will receive free admission to one of the Cultural Constraints workshops that take place in October as a “thank you” to my readers. If you are struggling with some aspect of the food sensitive lifestyle, the workshop is designed to review a few constraints and roleplay how we might prevail. Once we have language and have cultivated an attitude of being empowered, we can command respect. Not understanding these cultural practices results in people feeling isolated from social events. Living the gluten-free lifestyle is a social disease (Bacigalupe, 2015), but it doesn’t have to be. Understanding is the first step to thriving in life. To apply, please click here to access the application form. Pressing the "Replay Button" In previous chapters, we’ve discussed language to broach a conversation. Just as we do when thrown into the limbo stage when experimenting with alternative approaches to a social conundrum (Chapter 6), let’s try pressing the replay button in some of the scenarios we’ve already heard about. In Chapter 5, we assessed that Gianna’s (#50) living situation indicates an absence of agency. She does not have the power to ask her husband to amend his jelly-slathering ways in order to protect her from cross-contamination. What if Gianna embraced concepts of respect and compassion and said to her husband: “Honey, every time I eat anything in this house, I feel the effects of gluten. I’m sick of being sick, and also it frightens me because I know that if I expose myself to gluten, I can develop some of the long-term illnesses associated with celiac disease. How can we work together to come up with a solution so that you do not contaminate me in my own house? This conversation asserts agency and respect. Commanding agency in a relationship is risky because people generally don’t want to deal with change or assertiveness from someone who, until now, hasn’t been assertive. It is terribly hard to do this, particularly in a long-term relationship. It may expose that her husband has no intention of cooperating on that, or any other need Gianna may have. It may trigger her husband to list a litany of things he isn’t happy with in the relationship, changing the focus from Gianna’s concerns to his own. Rather than being constructive, her husband may initiate a behavior that quells Gianna from further discussing her needs. Ultimately, it may force Gianna to make some difficult decisions. On the other hand, it is very empowering for Gianna to ask that her needs be met and that her health is valued. She is commanding respect and this is an empowering step toward transformation. We also identified that in this scenario, Gianna’s husband was operating from the I-know-best attitude. Perhaps if Gianna gave him some literature that pointed out the ill-effects of gluten consumption for those with celiac disease, he would change his mind about being so careless in the kitchen. Now, I know it may fall on deaf ears. Some people you live with are locked into the I-know-best, gluten-doubt, and able-body bias frames of mind no matter what you do! Many of these people simply lack the knowledge of how to be compassionate. I believe compassion is a learned skill, and providing examples to people on how to be more compassionate goes a long way. For example, asking someone to say, “I’m sorry you have to live with this and I’ll do everything I can to support you” gives reassurance and loving concern. Or saying, “We’re all in this together” as described by Brenelle (#56, Chapter 6) is kind. Brenelle felt supported and respected by her family members. They created a safe environment where she could thrive. But whether it works or not, by taking the initiative to have the conversation, Gianna asserts her needs and defies her husband’s I-know-best attitude. She is taking control of her situation and testing alternatives while in the limbo stage. Another illustration comes with Julia (#49, Chapter 4), whose father said, “if you are so restrictive, why are you so chubby?” Rather than debating with her father, her response to his comment was to only eat very few safe foods. She describes being hungry most of the time, and seething in anger with her father’s judgment. This shows dysfunction in the relationship, putting Julia in a constant state of limbo. She can’t thrive until she works this out. Let’s hit the “replay” button on Julia’s scenario. What if Julia said to her father: “I really need you to understand what it means for me to have celiac disease. It means that I cannot eat anything that contains gluten. Do you know what gluten is? It’s a protein found in barley, rye, oats, wheat, and spelt. It is also in nearly every processed food, and any little amount of it makes me sick. Remember when I went to the doctor and was diagnosed? That’s what they told me. I really need your cooperation. I might be chubbier than you think I should be because my body doesn’t work properly. I am eating anything I can find that I know is “safe” and not all of those “safe” choices are high-quality foods. I want to get well, and I want to exist in harmony with you. Would you please help me to avoid gluten?” This shifts the dynamic in the father-daughter relationship. Before, Julia was victimized by her father’s cajoling. By saying these words to her father, Julia exerts agency. It empowers her to restate her needs in the future. Even if her father doesn’t relent, she is taking ownership of her needs, and ultimately this might lead Julia to having more self-confidence. I’m not saying it will change the way her father acts, but taking this initiative begins to give Julia more control of her circumstances and privileges her to make positive changes for her own well-being. Let’s hit the replay button on Cousin Sandra from Chapter 1. Instead of divorcing the family, which fills me with a profound sadness on her behalf, what if she had said, “I want to be a family member and to participate in these dinners and all of your conversations. I want to be included. I have a disease that prevents me from eating some foods and I feel safer bringing my own to these gatherings. When I ate foods prepared in your kitchen that should have been safe for me, I found that I became ill – likely from cross-contamination. I don’t want to have to be sick to be included. Rather than showing my inclusion by eating the same foods, how about if I bring my own foods and we dwell on our love for each other, relish being together, and not worry about whether I’m eating what you are?” And what if she actually took it a step further and singled out the person that was the most vocal about her special needs and asked him or her in front of the rest of the family, “Can I count on your support?” Would this have had the intended affect and changed the minds of some of those around the table? I don’t know, but I do know it would have given Sandra a different attitude about her dietary restrictions. I am sure there were many at the table that wanted her to continue to be a family member and were sorry when she left. If she had continued to show up with her bowl, and demanded with her actions that she was accepted into the realm, I think in time, nobody would have cared. Sure, she might have had to endure some teasing, but what family doesn’t tease each other about one thing or another? (Have you noticed though that those who tease can’t take it well when you tease them back? Just an aside observation.) It takes incredible courage, but if you can stand up to your family or the one ringleader in your life that has been making you miserable by asserting their power and ignoring your needs, you will be able to stand up to anyone. Being assertive about your needs permeates all aspects of life – rather than being apologetic, it shifts you to being self-accepting and requiring that others accept you too. Sarah (#31) first mentioned in Chapter 3, lived in limbo when she was isolated on campus that first year because of the school’s thoughtless rule of disallowing her to comingle with gluten-eating cohorts. The school environment forced Sarah to confront the able-body bias, causing her initially to be a victim of the circumstance. Because of the school’s interpretation of the American Disabilities Act, she missed out on developing those ever-important freshman relationships that can last a lifetime. Rather than having gluten-free foods available in the dining hall, authorities at the school determined that the only way to keep Sarah safe was to isolate her in her own apartment where she could prepare her own meals. She was in stages of both food and social limbo (discussed in Chapter 6) as she crisscrossed the campus to find safe havens to eat, and endured the loneliness of not being able to celebrate and party with her classmates. She resolved her limbo-state herself by finding other people on campus that would honor her needs, and they became roommates and friends in subsequent years. Her initiative yielded a positive outcome from an otherwise difficult situation. Claire (#25) from Chapter 3, was humming along in life until she re-entered into the limbo stage when she partook in the gluten-containing host on Sunday during communion in the church venue. She felt she had to participate in the communion ritual, eating the gluten-containing host to please the priest and to comply with the Pope’s edict; while at the same time, she suffered the consequences of being sickened each Sunday afternoon and feared the long-term effects of consuming gluten on a weekly basis. It was a dilemma that invoked the I-know-best attitude, able-body-bias, absence of agency, and gluten-doubt beliefs. Whew! That’s a lot to deal with, not to mention the higher-power guilt factor imposed by some religions. Couple all that negativity with a stomachache, and you can imagine what her state of limbo felt like – mentally and physically! If Claire reconsiders her decision to partake in light of these “truths” that are in play, she may decide not to consume the host, or she may approach the church and request that they accommodate her physical needs. When faced with the same gluten-containing host dilemma, Cora (#36) from Chapter 3 took control of the situation when she decided that she would only take the wine because “The Lord knows what is in my heart.” This is a very personal decision, but one that has to be ultimately resolved to avoid constant gluten contamination. By understanding the dominant powerful forces that cause us to feel pressured into participation, we can claim agency as to what works or doesn’t for us. In the workplace, Ava (#7) from Chapter 3 showered, groomed, and dressed for work only to turn around and go home because she accidentally soiled herself. She endured humiliation when she had to explain this to her boss and co-workers who told her to take Imodium or visit the doctor. This illustrates the state of social limbo, which is an out-of-control situation, where you have no answers and when other aspects of life cascade as a result. Ava tried to explain to her I-know-best and gluten-doubting boss and coworkers to no avail, causing her to ultimately quit working there. Sometimes, that is the only answer to get out of limbo—to put an end to a bad situation. Hopefully, Ava can find a more flexible situation where this problem won’t interfere with getting her work done. Pressing the replay button is an important component of transformation. It provides alternative ways to deal with tricky social situations. Transformation Our identities evolve as we live under the veil of celiac disease or non-celiac gluten sensitivity. When we attend ceremonies, rituals, or engage in commensality with family or friends, we constantly have to remember, “I can’t eat that,” or, “I need to ask about the ingredients,” or “I have to prepare in advance the foods I’ll eat.” It weighs on us in every aspect of life in the beginning, but over time we adapt. We wear a new mantle of food awareness as we learn to live with the disease. Individuals transform themselves under their evolved identity (Charland, 1987). It is at this level where the formation of stories and new “truths” interact to ultimately transform the identity to answer the question: How do I adjust my gluten-free lifestyle so that I can thrive? When a person with an illness stops fighting, hiding, and denying her disease, and takes assertive and protective steps by disclosing as necessary, she has attained identity transformation. In essence, she “owns” the disease, considers it part of her reality and incorporates its demands into all aspects of life. When someone with a disease attains the state of identity transformation, she accepts it and expects those around her to respect her resolve. She has altered her belief system to accommodate her new situation. Her identity is reformed as a result of changes in mental and physical awareness. She has found a way to love her new set of circumstances. She’s gone through the Big Shift (Chapter 6) to transformation. When the transformed individual thinks of her homeostasis “before,” she can’t believe how much life has changed. She even thinks differently! What she once held as sacred “truths” are now redefined. Foods she used to consider “normal” are not foods to her anymore. Pizza, which used to represent a fun celebration now looks like something that will cause her agony and pain, but that doesn’t bother her. She knows how to make a delicious gluten-free alternative that’s a lot healthier! She genuinely likes her diet of healthy, whole foods and she feels a million times better than she did when she ate gluten. Many of her younger friends can’t keep up with her energetically. She has endless energy, sleeps soundly at night, and wakes up pain-free, ready for the new day. She’s established new rituals with her family, and she has altered her ways to accommodate her needs. Things are mostly smooth. Occasionally, something happens that throws her back into the limbo stage, but those instances happen less and less often. She accepts herself and is no longer feeling at odds with the world around her because she has changed her attitude. She lives with confidence and self-esteem. She is not afraid to ask politely for what she needs, and she quit apologizing for her situation long ago. Life isn’t a series of food-conflicts anymore because she has surmounted the obstacles. She loves her new identity and the graceful living she has finally attained. Positive Adaptations Scarlet (#14) conveys an example of coming to terms with gluten-free constraints in describing her first post-diagnosis Thanksgiving. She reports she was initially stumped as to what to serve, so she made cheeseburgers without buns. To this day, her family jokes about that first Thanksgiving. Family adaptation is further illustrated in Sadie’s (#41) story: “We make [gluten-free food] a fun thing, to find places to go such as gluten-free bakeries when we travel, or places we wouldn’t otherwise go to when at home.” She describes gluten-free chocolate doughnuts her husband found at a bakery 40 miles away, and how he would occasionally get them for her as a treat. These adaptation stories illustrate positive ways families accommodate the needs of the person with celiac disease. In time, these stories become integrated in the family’s collective lore and new traditions replace food-centered rituals. For example, when reflecting on her relationship with her husband, Caroline (#28) says: Food is a pretty central part of our lives. We both enjoy food. And we both come from families that have always nurtured with food. So, I am trying to shift that and find other ways to connect, and to show that we are nurturing each other without being so food-focused. We do a lot more outdoor activities, like hiking and biking. We used to be more indoors people up until that point. We are learning that together. When we want to be with friends, instead of going out, we have friends over, and I try to do a game night, instead of a food-focus night. Then, we can just have a couple of snacks versus a meal that most people would be unhappy with, if their favorite foods weren't involved. Caroline describes her adaptive strategies for spending quality time with her husband and friends without involving food. She tells how they now do physical activities rather than centering social gatherings on food. Similarly, Willow (#30) describes how she consciously tries to remove the emotional connection to licorice and baseball, separating the gluten-containing licorice association from her enjoyment of a baseball game. After a few months of eating gluten-free, Madeline (#57) said, “Wow, I didn’t realize how sick I was,” connecting her diet with her newfound health. After several mishaps, Lillian (#58) has taken the helm to host Thanksgiving and Christmas dinners, so she doesn’t inconvenience her family members with her needs, and so she is assured of a safe gluten-free meal. She enjoys her new role as host. Scarlet decided to grow the foods she consumes in her garden. She discovered a fulfilling hobby, while also assuring that she has safe foods. These are just a few examples of how study participants transformed the way they view themselves, changed their rituals, and how they interact with friends and family. Rewarding Transformations For some participants, the gluten-free diet required by celiac disease provides a rewarding personal transformation. Those who are able to find “redemptive meaning” through transformation tend to be happier (McAdams & McLean, 2013, p. 233). For example, Allison (#35) describes her transformative story as follows: When I was first diagnosed, I was well over 230 pounds. I gained 60 or 75 pounds in a year. I was so sick. Once I was put on the gluten-free diet, I immediately felt a change in my body. I lost weight. I was feeling great, and I had a lot of energy. I have lost well over 50 pounds and 21 inches. And I am still losing! I am pretty thankful I’ve gone from a size 20 to a size 12. I’m happy with the results. I am definitely an advocate for getting diagnosed with celiac disease because I can understand the frustrations and the feelings and emotions and the cycles that you go through. Because when you stop eating gluten, you are grieving, and it’s like you’ve lost a loved one. It’s a whole new lifestyle. In this story, Allison describes the grieving process and then the personal satisfaction from being on the gluten-free diet. Her transformation was rewarded with a healthier body and lifestyle. Similarly, Sally (#3) describes a positive physical transformation as a result of accepting the diet and constraints of the disease: You know, it’s something I had to go through to become who I am today, and in a lot of ways, I’m a much better person than I ever have been. I mean, I eat better. I may still be overweight, but I’m getting my leaky-gut syndrome taking care of and that’s going to eliminate a lot of my issues. I appreciate the things a lot more in my life now than I ever have. And I suspect that I had celiac disease for about 10 years before I was even diagnosed. But something changed about four or five years ago, and it went from small issues to major issues. Sally’s weight and physical health improved after eliminating gluten, enhancing the quality of all aspects of her life. Sally’s positive metamorphosis illustrates a common sentiment expressed by other study participants as they realize how much better life is with a healthy body. Forty-five-year-old Hazel reports she first attributed her physical ailments to aging, saying, “I decided that was part of getting old...like I felt like I was about 70 years old.” After being gluten-free for a while, she commented on how much better her body felt, and how much more she was able to do with it. She went from surrendering to “old age” to feeling “young” again. Correspondingly, Claire (#25) notes, “I am thrilled. I am eating healthier, and I also noticed I was more relaxed now that I got off the gluten.” Claire’s outlook on life changed from being anxious about everything to having a calmer demeanor. And Lucy (#26) describes her post-gluten transformation as follows, “I have increased energy, and symptoms I had my whole life—like abdominal pain, fatigue, and constipation—are gone. I slowly felt better and now have a lot more energy and a lot less illness in general.” Lucy enjoys a more physical life than she did before she stopped eating gluten and feels she has regained her health. My surgeon father-in-law, Jacob Peretsman reminds us: “When you have your health, anything in life is possible.” Creative Transformations Hazel (#22) describes how her life changed after being diagnosed with celiac disease. She reports, “I used to be a chef. And I have a really, really strong intolerance to gluten. I actually react tactile: if I touch it, my hands peel. So it changed my whole life. It changed everything about my life.” Hazel was no longer able to perform her trade of baking gluten-containing foods and had to relearn how to bake. Hazel’s example illustrates the entire arc of transformation. Her liminality or “limbo” stage occurred when she realized it was gluten causing her hands to peel. She describes how devastating it was to learn that materials she used for the skill she worked so hard to cultivate were causing her to have problems. She experienced the fear of being unable to do her job. Her life was upended, as she worked out a solution. But her homeostatic shift included learning to bake without gluten, while using her culinary skills. Her identity transformation occurred when she declared herself to be a gluten-free baker. Hazel makes gluten-free bread for her Mormon sacred communion and shares it with others in the congregation who are gluten-free. Her positive transformation was reinforced when her son said: “Mom, you make gluten-free food taste good.” Other participants talked of how they adapted. For example, Riley (#65) now makes a lovely, soft gluten-free bread from a recipe she found on the Internet and sells it at the local farmer’s market. She says: “It has been a really nice experience, especially when people who eat gluten want to try your food.” Isla (#39) reflects on a kind gesture from her brother. He had the bakery put several frosting roses into a separate bowl for her to eat, so they wouldn’t be contaminated by the cake. She felt his kindness indicated his full acceptance of her disease, and he was helping her to still be able to enjoy some “normal” aspects of a birthday party. Carrie (#4) describes how her once rebellious family now enjoys eating the same gluten-free foods she prepares for herself, especially her desserts. In fact, they say they like her gluten-free food as much as they like gluten-containing desserts. Cara (#53) was diagnosed along with her two sons. She describes how she brings similar gluten-free dishes to social engagements for her family to consume. Someone at one of the potlucks said, “How blessed your boys are that you are their mother, and how hard this would be if you didn’t have the positive attitude you have.” That comment made Cara feel like she achieved a milestone because she was recognized for her unique talents to make tasty foods for her sons and herself. She also felt accepted by the potluck attendees. These examples illustrate how participants became comfortable with their new homeostasis and identity transformation. Snags After Transformation A friend of mine, Margaret described how she changed her ways after her transformation only to hit a snag. They decided a few years before to stay in a hotel when visiting family and friends so that Margaret could prepare her meals in a safe environment without having to disrupt the flow of the household. This worked for several years. She and her husband, John were planning to visit her in-laws for Christmas. This time, John really wanted to stay in his parent’s newly remodeled home. It also meant a lot to his mother, Milly for them to stay under one roof to have quality family-time. Margaret briefly went back into the limbo stage and worried this would cause a host of problems for her because no one in the family is gluten-free. John’s family members have shown reluctant tolerance and I-know-best attitudes toward her before – particularly Milly – the territorial captain of the kitchen who really doesn’t like sharing it with anyone. After hearing my Thanksgiving story (Chapter 5), Margaret was also worried if Milly baked while she was there, that the flour dust in the air would cause her to have a reaction. Margaret was in a dilemma. She didn’t want to request that Milly didn’t bake her favorite Christmas cookies, cakes, pies, and breads. In Milly’s mind, it wouldn’t be Christmas without them. And Margaret didn’t want to impose her dietary restrictions on everyone. Because Margaret is so sensitive to gluten, part of her transformation was to decide not to eat foods anyone else prepared. The only exceptions are if she co-prepares, or if the person making food for her also has celiac disease and is strictly gluten-free. On previous visits to Milly’s house, before Margaret’s transformation, Margaret ate “gluten-free” foods that Milly prepared, only to become sickened. When Margaret asked about ingredients, Milly said, “Oh come on… you are being so dramatic.” Margaret actually wondered if Milly didn’t “accidentally” slip gluten into her food just to observe what happened. Needless to say, they don’t have a trusting, loving relationship. Margaret determined the only way to stay safe is to bring her own food, cooking utensils for meal preparation, and an emetic, just in case she inadvertently consumes gluten. “Best to get rid of it fast than let it go through the body,” she said. Rather than worrying as she would have in the past, about bread crumbs on the counter, flour dust in the air, or being contaminated from the sponge in the sink, Margaret took the initiative to call her mother-in-law to ask: “How can we work together to accommodate my special needs during our Christmas visit?” Asking the question this way suggests a cooperative attitude, and empowers Margaret to (re)broach the topic rather than sweeping it under the rug. It brings to light that Margaret has a bona fide disability that needs to be addressed. Margaret came up with a few ideas that she thought would protect her while visiting. During the conversation, Margaret explained that on way to her mother-in-law’s house from the airport, she would need to stop at a grocery store. She told Milly that she would need a designated cooking area in the kitchen that was hers, about 2” x 3” that she could put her things on and cover with a dish towel. She asked that all baking be finished 24 hours before she arrived (it takes 24 hours for the flour dust to settle). She asked Milly to have space in the refrigerator for her food (about the size of two gallons of milk) where she could put her bag of groceries – that everyone else knew to leave alone. In the kitchen when cooking occurred, Margaret explained to Milly that she would need a burner so she could use the pan and lid she would bring with her to cook a one-pan meal. Margaret worked out how to make a quick, easy one-pan dinner and practiced making them at home so she could time her meal to be done when everyone else’s dinner was ready to serve. Her plan entails making a piece of fish or chicken she cooks half way (about 10 minutes), then adding slices of baked sweet potato, a fresh vegetable such as broccoli, and a little water for steam, then put the lid on it and cook it on medium for 10 more minutes. Margaret said since her pan is covered during the cooking process, if someone is cooking gluten containing foods, she won’t worry too much about cross-contamination. She plans to bring her own seasonings (since some packaged mixtures contain gluten). Broaching that conversation with Milly shows a lot of courage on Margaret’s part – she owns her special needs. She is not imposing them on anyone, except to ask for room in the kitchen to be accommodated. She also commands respect and took the initiative to get it. She also took the burden of providing gluten-free foods from Milly – taking all of the initiative to purchase and prepare her own foods. As a hostess, Milly must be relieved, (at least you’d hope so.) While driving from the airport to Milly’s home, Milly pushed back. Milly said she had plenty of frozen meats and vegetables in the house that Margaret could eat and that they didn’t need to stop at the store. Milly explained that she has a list, it wouldn’t take long, and then she’d be sure to have everything she needed. Milly said, “I’m insulted!” Margaret said, “Please don’t be insulted. I react to the smallest amount of gluten and this is what it takes for me to be safe. I really need you to understand I’m not insulting your food, you make beautiful foods I wish I could eat, but this disease makes it challenging for me. I’m doing what I need to do in order to stay well.” Under her breath, Milly said, “No wonder John has gotten so skinny!” Reluctantly, she agreed to stop at the grocery store. Then Milly said she wanted to make her special Christmas morning braided cinnamon roll to serve hot from the oven for breakfast. Margaret didn’t want to impede on any of the established traditions, so as a concession she said she would wear a mask while the roll was baking, but asked that Milly make the dough 24 hours prior to her arrival. John and Margaret adjusted their arrival date accordingly. It is hard to demand that special needs are addressed, especially when staying in someone else’s home. Usually there is a “ruler of the kitchen.” Cooks tend to be territorial about their domain and don’t want people in their drawers and cabinets either. If you know there is someone in the home that feels this way, it’s best to have your own station somewhere off from the main part of the kitchen, so most of your food preparation can be away from where the “ruler” presides. In this situation, cooking on the same stove top is a problem. If you can bring a hot plate, that problem is resolved. It takes courage to assert yourself in this way. If you already have strife in the relationship, this can easily add fuel to the fire – but it’s better to take precautions than to starve yourself, or be “glutened.” Some people, like Margaret react to such a little amount of gluten that it’s not worth taking any chances. I admire her courage and hold her up as a role model for how to gracefully travel and stay in someone’s home. She has inspired me to adapt her practices when I visit other people’s homes, though staying in a hotel where you can pre-make your meals for the day is so much less complicated (and peaceful). It’s A Process It seems that the first year or so, people often struggle to figure out what they can and cannot eat. They are coming to terms with their personal levels of sensitivity, which often change as the body gets cleaner. Several participants noted (and I have also experienced this) that the cleaner the body is (after avoiding gluten for a period of time), the more sensitive to gluten it becomes. Much of the first year is also spent in teaching our friends and loved ones the severity of the disease. It is hard enough for the person with celiac disease who has been consuming a lifetime of gluten to come to terms with a gluten-free lifestyle. As we have seen, study respondents described lots of struggles at home in the transition to gluten-free. Since food is integral to most social situations, many described relationship problems, breakups, separation, and general turmoil. Gluten-free restrictions permeate nearly every aspect of life. How families handle these restrictions is a barometer for how well they handle conflict and disruptions, often revealing other relationship problems. And over time, these food-related alterations might take a toll on all aspects of family life (Konrad, 2010) as we have seen with several of the participants who reported major changes in their relationships. There were problems before they were diagnosed; afterward, things escalated, so that the gluten-free diet became the catalyst that prompted change. Grace (#17) conveys the heartbreak that accompanied her Big Shift (Chapter 6) and identity transformation: I miss looking forward to eating. Sometimes I view food more as an enemy. I used to love it. I think back to the days when I would get excited about knowing we would go to a certain restaurant to eat. Or, when my mom was making lasagna for a special occasion. My family celebrated around food. When you look at photo albums of my family, there are more pictures of food than there are pictures of people. Because that’s what an Italian family does. And the holidays, the special things that were baked for a specific holiday, whether it was special Easter bread at Easter time or a certain Italian cookie for Christmas, or whatever the tradition was. I miss that. And I don’t feel that anymore because I can’t eat lasagna. Christmas comes and goes, and my mom makes at least 10 different kinds of cookies, and multiple dozens of each one. She starts on Thanksgiving, and she would put them in the freezer. She would put them in shoeboxes. And she would freeze them. And then at Christmas, we would have them. It’s been four years, and I haven’t had any. And she still does it. So I’m like, don’t even show me mom. She’s another one that doesn’t get it. She’ll call me and tell me, ‘Oh, yes, this morning I tried a new recipe for this homemade muffin’… And I’m like, ‘Oh, mom, really? Do I need to hear this? Do I need to hear about your homemade muffins?’ So, now I look at food more like an enemy. I get angry at it. I miss that excitement. Grace’s story emanates remorse and a longing to enjoy her mother’s food with other family members. She also expresses anger at her mom’s lack of understanding of her dietary restrictions, and at her own inability to eat foods the way she used to. Food, which once represented practices of love, is now an adversary, and an enemy. Her homeostatic shift encompasses her grief, losing the ability to eat the foods of her heritage, as well as the acceptance that this is how it is from now on. She concludes the story with, “This is my reality.” Though she admits to mourning her past lifestyle, she conveys a high degree of acceptance and a transformed identity. These redemption stories illustrate how the sharing of our stories can result in rewarding transformations after the homeostatic shift. I also observed that people’s acceptance of life with celiac disease changed over time. The longer someone lives with it, the more they seem to adapt to the lifestyle. Those newly diagnosed seem to struggle more with all of the elements of what to eat and how to navigate the imposing cultural constraints. Those who have had it a while figured out what diet works best for their bodies, and have incorporated successful adaptive strategies for social encounters. Throughout this book, we’ve learned that when we have a life-altering diagnosis, (or really any life-altering event), dominant cultural constraints may no longer serve us. We have to redefine our own set of “truths,” work with them to tweak them out for ourselves, such as when we experiment with foods and in social settings. It is a balancing act that takes time. In the past chapters, we’ve discussed examples of how respondents shared the discomfort of shifting truths in various venues as they struggled in the limbo stage: workplaces, restaurants, and schools. Here, cultural constraints were challenged and “truths” were redefined as a result of being diagnosed with an illness. Next, people experienced the Big Shift as they accept their new circumstances and attempt to gracefully navigate life in light of it. The Big Shift occurs when we realize life will forever be altered to a new definition of homeostasis. Finally, we transform our very identity to accommodate our new “self.” It’s a process that takes years. It certainly did for me. Jean’s Transformation Story Celiac disease has transformed nearly every aspect of my life, my occupation, and my social interactions. My individual transformation, as with most people, happens over the course of several years. Before I am properly diagnosed, I find myself between jobs. Feeling miserable and wondering who would hire me with my maladies, I decide to attend a vegan “healing” cooking school for a year. It makes sense to take some time off to regain my health. Diet is something I can control, and I hope it is the answer since none of the drugs doctors prescribe work. I find a cooking school that advertises teaching “The Art of Healthful Cooking.” It is a professional, certified school run by a culinary artist in Boulder, CO. I love it the minute I walk in. The aroma from the kitchen melds a combination of cumin, cinnamon, chocolate, green tea, chili powder, and lemongrass. It is intoxicating. The teacher teaches us the “Zen” of cooking, where the body and senses reflect taste combinations to the chef. Students never use a recipe and learn to creatively employ what is on hand. In the course of becoming a vegan chef, I learn about healing foods, grains, beans, vegetables, nuts, seeds, and fruits. Other teachers at the school teach me how to make beautiful gluten-filled baked goods and how to manipulate dough to get the best crumb and texture. The most important thing I learn is “ratio” baking and the concept of “to fit.” Though the cooking school is not gluten-free, these techniques later enable me to develop recipes for my gluten-free baking cookbook. Another significant thing the teachers teach me is to focus on how the foods make you feel as it progresses through the digestive process. Does it make you feel satisfied and comfortable? Or, do you feel like your body is fighting the food? I don’t put two and two together, but it is a glimmer of what is to come. How I love that cooking-school phase of life! This experience contributes to my new identity once I learn my maladies are caused from gluten. Shortly after I finish the cooking school, I am diagnosed with celiac disease. While I am glad to have a diagnosis, I still feel untethered. One day, my husband shows me an article in a magazine announcing a contest called “Win Your Dream Job.” It promises coaching from experts, a new computer system, cash, and best of all, the opportunity to consult with renowned career mentors appropriate to the winner’s dream job field. I fill out the entry form and send it in. And wait… Wow, imagine winning! But even if I don’t win, just writing about my “dream” help me to formulate what my next step in life will be. Alternative Cook, LLC is born. I immediately start working on the first instructional DVD. I don’t know what gave me the idea that I would be as engaging as Rachael Ray, but when I watch the first few segments of the “takes,” I am embarrassed to see that I am a chatty airhead. One of the people who sees me in those early “takes” says I am condescending and bossy. (Now that hurt… and how can a person be bossy on a cooking video?) I am going for “warm, engaging, and insightful. Another describes me as “pleasant and straightforward.” That is better but I have a long way to go. Then one day, the phone rings. I am one of three contest winners! I feel validated. Like others I interviewed, my life was transformed with the diagnosis. The process of attending cooking school, creating the instructional DVDs, becoming a published gluten-free cookbook author, and then realizing that gluten sensitivities impose social constraints and earning a PhD to study that, is how I came to terms with having celiac disease. Food has defined my life and it has been either my greatest nemesis or my healing solace, depending on my choices. It has determined how I spend most of my time, altered my career, and has consumed my thoughts for the last two decades. As I look back on this path, the steps I’ve had to take to surmount physical issues amaze me. It has truly shaped my identity, occupation, and trajectory for the second half of life, and I feel like I’ve been through hell and back with pain, suffering and dealing with some of the professionals in the medical community. As wonderful Julia Child said when her cookbook was initially rejected, “At least it kept me occupied for many years.” Celiac disease has given my life a meaningful purpose while evolving into my transformed identity as “an insecure, overachieving orthorexic.” I am grateful for finally being diagnosed, and for the life path it put me on. Summary of the Transformation Process We’ve now covered the components of transformation. Re-capping the Disease Process from Chapter 6: we live in our happy state of homeostasis until we experience a life altering event such as a diagnosis with celiac disease; then we question everything we once held as true, learning it isn’t true for us anymore; we enter the “limbo” stage or liminality where we have to experiment with new strategies in order to survive physically and socially. This is an uncomfortable stage when we think we’ve got it all figured out and the rug is repeatedly pulled out from underneath us. Slowly, we come to terms with it and enter into a new state of homeostasis where our new “truths” seem to be working for us. This is the Big Shift. Finally, we transform our lives so that living with the disease isn’t the focus of everything we do. It becomes normalized and we can function smoothly once again in life. While undergoing the process of transformation, we have learned to command respect, to educate those we love, and to expect compassion. It’s a process that applies to anything that changes the way we think. Transformation doesn’t require a disease diagnosis to occur. It happened to the entire world when it was determined that the Earth wasn’t flat. Everything about how we had previously thought about the Earth changed in that moment. The collective population had to go through a process of transformation to re-think everything that had been previously thought. It happens when there is a global pandemic and we have to alter every aspect of our lifestyle, or when any life-altering event happens. This is the process we go through. Some get stuck in one component. For example, some may never get out of the limbo stage, as illustrated with the participant stories above. Others may never even get to the point of defining new “truths” because it is just so different from how they believed. For example, a religious person who thought of bread as a sacred food may never be able to eliminate it from their diet. By understanding the process, we can navigate ourselves through it, and hopefully get to the other side with a rewarding transformation. Moving Forward Having language equips us with tools to discuss these evolving “truths.” The next chapter provides a summary of the language developed herein, as well as proposing a catch phrase to efficiently communicate without long explanations. Discussion Questions: 1. Describe what life looks like for you, now that you’ve completed the stages and entered into transformation. ___ References in Chapter 7 Bacigalupe, G., & Plocha, A. (2015). Celiac is a social disease: Family challenges and strategies. Families Systems & Health, 33(1), 46-54. doi: 10.1037/fsh0000099 Charland, M. (1987). Constitutive rhetoric: The case of the people Quebecois. Quarterly Journal of Speech, 73, 133-151. doi: 10.1080/00335638709383799 Konrad, W. (2010). Food allergies take a toll on families and finances. New York Times, Late Edition (East Coast) May 15, 2010. McAdams, D. P., & McLean, K. C. (2013). Narrative identity. Current Directions in Psychological Science, 22(3), 233-238. doi: 10.1177/0963721413475622 Continue to: Gluten-Centric Culture: Chapter 8 - Empowering Language Back to: Gluten-Centric Culture: Chapter 6 - From Shaky Ground to the Big Shift

Celiac.com 06/25/2021 - Chapters of Gluten-Centric Culture – The Commensality Conundrum are being published quarterly in the Journal of Gluten Sensitivity. Dr. Duane will be holding small discussion workshops starting July, 2021 for those interested in diving into the material in the book (please see below for details). Ideologies as explained in chapter one can be summarized as taken for granted truths. These "truths" govern how we interact with each other. Dr. Duane conducted a nation-wide study of over 600 people who live with food sensitivities while earning her PhD. This work is the result of that study. Throughout the document, study participants are quoted. Names have been changed to protect the identity of study participants. Ideologies evolve and change depending on cultural norms, or who and what are influential at a given time. They are defined by influencers like the media, what celebrities or politicians say, what our momma taught us about etiquette, what the government says is a healthy diet, and what we learn in church. Nobody questions these until they are found to be untrue, such as when we are diagnosed with a disease that makes us unable to consume virtually any processed food. Then we come into conflict with these "given truths." Ideologies cause us trouble when "bumped" up against, because we have no language to describe them. We're vaguely aware we've done something to upset the apple cart based on the reactions of others, but we can't really put our finger on what it is or what to do about it. When we don't go along with what is commonly thought to be true, we feel awkward in social settings, but it isn't something easily discussed. Giving "language" to this empowers us to call out some of these "truths" and have meaningful conversations with those we love. This way, we can rethink our definitions, and teach those around us to see it our way. Let's start by examining the first ideology I am terming reluctant tolerance and how it was formed by various influencers. https://sfd.celiac.com/uploads/monthly_2021_06/bizarro_03.webp.54b6d06f0c8d1291cc0d0d7741843d09.webp Figure 2.1 – Gluten Sensitive (Licensed with permission from Comics Kingdom (Bizarro).) Reluctant Tolerance (Note: Excerpts from this chapter were previously published in the Journal of Gluten Sensitivity in an article entitled The Media Encourages Negative Social Behavior Towards Gluten-Free Dieters, January, 2018.) The media is very influential on swaying opinions and providing role models for behavior. What entertains us often becomes how we act in social settings. "Gluten" is often the punch line for celebrities. For example, a popular talk show host expressed an ideology of reluctant tolerance when referring to people following the gluten free diet saying, "Some people can't eat gluten for medical reasons… that I get. It annoys me, but that I get" (ABC, 2018). This cheap laugh illustrates the reluctant tolerance ideology. Reluctant tolerance pervades our society, with people begrudging those who have restrictive dietary needs. Comments like this perpetuate the feeling. George (#67, celiac.com) reacts to the comment as follows: I found the video very telling. It exemplifies what happens to society's point of view when something becomes ‘trendy' whether there is a genuine problem some people face or not. It can be bad enough when popularity of a diet/fad/idea/opinion causes harm to businesses and industry, but it's even worse when it gets down to an individual's health and what amounts to casual poisoning. … What a shame we have to deal with that sort of jaded disbelief. I remember a long time ago when late-night comedians relied on offensive ethnic jokes. Today, that kind of joke is off limits. What happened to change that? You don't hear other slurs any more on TV, likely because that reluctant tolerance attitude ultimately wasn't tolerated by those maligned by the jokes. Hallelujah! Similarly, I think we need demand respect and say, "Hey, we have a serious disease. Stop joking about it. You erode the gravity of it when you do." What contributes to this reluctantly tolerant attitude toward gluten? Let's examine some examples in the media that may play a part in forming the public's opinion about it. Negative comments about the gluten-free diet are replicated in situation comedies, in memes, comics, YouTube videos, and other forms of media. Those with allergies or gluten intolerance are regularly targeted for ridicule. And, gluten sensitivities are frequently treated with skepticism. For example, a celebrity chef said he had "a gluten-free intolerance." He notes, "I can eat bread just fine, it's the people who insist on proselytizing about their medically dubious grain-free lifestyles that piss me off" (Filloon, 2018). This type of comment from celebrities may influence how seriously a restaurant server takes individuals who disclose they have celiac disease. The server, taking his cue from the celebrity chef, may jadedly regard an order for a gluten free meal as an inconvenience by assuming the person requesting is evangelizing. He may only comply with the request with reluctant tolerance, whereas if he hadn't heard that popular chef's comment, he might have had a more willing attitude to the special-needs patron. Consider an episode of a popular comedy series, when a young guest of the family asks for a gluten-free breakfast. The mother in the family greets his request with exasperation. The show ends with the guest abandoned on a deserted island, forgotten by the entire family. Another comedy, the family mocked a sibling's girlfriend character with multiple allergies by taking shots of whiskey every time the girlfriend mentioned another item she's allergic to, without the girlfriend knowing why they were doing that. They "othered" her, and snickered at her special needs behind her back. This scene reinforces the attitude that those with disabilities as weak and worthy of ridicule. It makes light of the real threats of living with allergies. As I watched these two episodes, chuckling along with the rest, I thought to myself, "Do these jabs on TV influence my friends and family to question my serious reaction when I consume gluten?" An episode of a popular children's series is probably the most disturbing example of shunning the person with food sensitivities. In the scene, children throw gluten-containing pancakes at a boy, after his nanny informs them the boy cannot eat them. Would the children watching later imitate this behavior? Researchers Huesmann and Taylor, 2006 think so. They point out that behavior viewed on TV can present a "threat to public health" and lead to "an increase in real-world violence and aggression" (p. 393). Even if it does not incite violence toward food sensitive individuals, these depictions diminish their credibility. Scenes like those described above undermine the need for safe food, pressuring those with celiac disease or food sensitivities to conform and be "normal," perpetuating ideologies of reluctant tolerance, and favoring able-bodied people. A popular adult series (Parker, 2014) put a new twist on the reluctant tolerance of gluten ideology in a recent episode. In this case, however, it favors those who are following the diet. In it, town council members dread encountering a teacher, because he only talks about how well he feels on the gluten free diet. In this episode, a United States Department of Agriculture (USDA) representative speaks on the recommended diet for Americans, stating that gluten won't cause catastrophic illness and is safe to eat. From the audience, the teacher yells, "if it is safe, then eat it." With some reservation, the USDA representative drinks the distilled gluten from his presentation table. Seconds pass, and the USDA representative seizes in pain. A moment later, a key body part detaches from his body and flies around the filled auditorium. Mayhem results. The citizens hurriedly rush home to throw away all of the foods in their kitchens containing gluten. Even though I started watching this episode with some skepticism, expecting to see reluctant tolerance for gluten, I was falling off of my chair laughing. It was very funny, favoring those avoiding gluten. The episode concludes with the USDA turning the food pyramid upside down, making grains the food to eat the least of, and meats the food to consume predominantly. Though irreverently hysterical, this is an example of the ideology that gluten is the target for derision, as something to be reluctantly tolerated. We Imitate What We See Gluten "performances" on TV and in the movies serve as role models for members of society, instructing us on how to act in social interactions. There is an abundance of research that finds we imitate what we see in the movies or on TV in real life. For example, those who hear violent lyrics tend to display more hostility and aggressive thoughts than participants who were exposed to neutral songs (Anderson, Carnagey, & Eubanks, 2003). Exposure to media violence is highly correlated with bullying behavior (Lee & Kim, 2004). Humans mimic what they are exposed to. If we see someone smoking in a movie or on TV, we are likely to be influenced to smoke (Villanti, Boulay, & Juon, 2010). If we see a character we identify with eating, we are likely to eat too (Zhou, 2016), and if we see someone having sex, we are influenced to imitate that behavior as well (Collins, Martino, & Elliot, 2011). Similarly, if we see violent behavior on TV, we are likely to be more violent (Huesmann & Miller, 1994). In the same way, exposure to negative media, or powerful perspectives on the gluten free lifestyle, are likely to influence ideological "truths." TV and celebrities influence how people interact in all aspects of daily life (Hall, 2012), even their political views and affiliations (Nownes, 2012). Celebrities join the blitz by mocking those who do not consume gluten. Celebrity Quips A popular etiquette writer says, "As far as I can tell, the biggest side effect of a gluten sensitivity is that you actually become the number one symptom: a huge pain in the ass." Celebrities that dish gluten vituperations form ideologies that are "the touchstone of both truth and falsehood" (Gellner, 1991, p. 123–124). Though this writer's crass comment maligns those with gluten sensitivities, most people with celiac disease will admit, their restrictions are indeed a pain in the ass. Ideologies are further perpetuated by celebrities' quips in the popular press. A celebrity chef said, "Your body is not a temple, it's an amusement park. Enjoy the ride," and another chef said, "The only time to eat diet food is while you're waiting for the steak to cook." These quotes endorse dietary indulgence, positioning the restrictive diet as a form of repression. Likewise, a celebrity's casual endorsement of virtually anything can influence America's consumption of it (Kinsella, 1997). For example, an influential talk show host recently declared publicly, "I love bread." I love this talk show host and greatly respect her opinion. But, does her comment cause others like me to question our decision to avoid bread? I admit she is speaking for herself but because she is so influential, her comment makes me feel abnormal for not eating bread. And even though I know what it will do to me, I want to be accepted by the others who follow this host. Celebrities have great influence on people's thoughts and actions. Self-harming behavior could translate into a person with celiac disease taking a risk of consuming the slightest amount of gluten due to peer pressure by celebrities (Hilton, 2016). Collectively, these media examples cue audiences that anyone who asks for dietary accommodations is annoying and should only be reluctantly tolerated. Comments like these perpetuate the gluten-doubt ideology. Gluten-Doubt An actress called the gluten free diet "the new cool eating disorder," a great example of the gluten-doubt ideology (heath.com). Though ideologies stemming from religion, government publications, media, and pop culture often guide behavior, we are not always aware they are driving our actions. These associations are deduced anecdotally. Ideologies are the impetus for how people explain their behaviors and decisions, which creates a consciousness that impacts social practices (Rohan, 2000). The pro-gluten website pharmafist.com posts a comic stating, "Let's put an end to the gluten free trend" (Bernard, 2016) perpetuating the ideology that celiac disease is not a real or serious illness, but rather a trend. It creates an environment of suspicion for those requesting gluten free foods and instills doubt among others. A hostess might see this comic as she prepares food for her extended family, which includes a request for a gluten free option. While the hostess may already feel inconvenienced by the request to alter her menu, the "gluten trend" comic may increase her resentment over having to make special dispensations, or may cause her to question the relative's true need for a gluten free diet. A restaurant held a celebration of gluten calling the eight-course dinner "(It's) A Celebration of Gluten (Bitches)" as a way to refute gluten-free meal requests. Whether conscious of it or not, the restaurant ad casts an ideology of gluten-doubt on the validity of those requesting gluten-free foods. Politicians on the Bandwagon Even politicians jump on the "mock-gluten" crusade. A presidential candidate weighed in on the gluten free bandwagon, saying he will have, "the gluten-freest presidency in history" and posted a slogan "Dam tootin, no gluten," though it was clear this person did not advocate a gluten free diet. This inauthenticity makes the post appear as a feeble attempt to attract voters who pay attention to their diets. Another politician stated that if elected, he would not provide gluten-free meals to the military, in order to direct spending toward combat fortification, discounting those with celiac disease and implying that gluten free meals are a waste of money. This is also an example of the able-body bias ideology discussed below. On a T-Shirt, for Cryin' Out Loud! America's fascination with gluten-free jabs extends from television shows, news headlines to (if you can believe it) T-shirts and greeting cards. Etsy.com sells T-shirts with slogans that say: "Extra gluten," and "This shirt is gluten-free." Doormats are available too that say, "No gluten or BS allowed beyond this point." There is a greeting card that says, "Every moment is a gift until someone puts flour in the gravy." It seems no matter where you look, whether on TV, or walking down the street glancing at someone's T-shirt, there are media vilifying gluten, perpetuating the reluctant tolerance ideology. Consider the New York Times headline, "The Myth of Big, Bad Gluten" (Myth, 2015), which aligns gluten with the fairytale "big, bad wolf." Business Insider published a YouTube video on, "Why Gluten Sensitivity (a 15 billion dollar industry) is fake," which casts doubt on non-celiac gluten sensitivities (NCGS). Further, Business Insider calls Tom Brady's gluten-free, dairy-free diet "insane" (Brady, 2017). The reluctant tolerance of gluten ideology bombards us in virtually every arena. Able-body Bias The able-body bias ideology refers to a predisposition to prefer those who are "fit and able" to those with disabilities. Popular culture and media further purvey able-body bias ideologies concerning food and behavior with its trivialization of allergens in food. For instance, in a popular family-oriented movie, a prominent food provider is warned by the parents of a child with peanut allergies to ensure that the corndog he's handed the child is peanut free. Just as the child bites into the corndog, the food provider remembers it was fried in peanut oil. This is meant to be a humorous moment in the film, implying that the parents' protective warnings are smothering the child. But parents raising children with peanut allergies attest that it is quite far from funny (Duane, 2018). Not providing "access" causes others to view the disabled as an inconvenient exception (Titchkosky, 2009). Able-body bias ideologies perpetuate the notion that only weaklings have food sensitivities. Another able-body bias scenario that haunts those with celiac disease is the event of a national disaster where the Red Cross provides foods. Rose (#5) describes her concern: "They talk about when there are disasters and the Red Cross will come in and bring food to people. What do they bring them? They bring them [gluten containing] sandwiches. I wouldn't be able to eat that." Further, elderly people with celiac disease wishing to live in a retirement home may be turned away because the kitchen cannot comply with their restrictions. I discuss the American Disabilities Act (ADA) in detail in Chapter 10, but it does not apply to food services in eldercare facilities. Though many offer gluten-free menu options, currently, there are only eight certified-gluten-free elderly homes out of 245,000 retirement communities in the United States (They are: Grandview Terrace with three GLUTEN FREE-certified locations and GenCare Lifestyle with five communities in AZ and WA). The able-body bias ideology mandates that everybody can eat gluten, and casts doubt on those who cannot. This puts people who need care from the Red Cross, and senior care in a real predicament. Closer to home, able-body bias affects those in a family who feel they are the "only one" in the family with celiac disease. Many people who live with the disease state that other family members have a "for them, not us" mentality, ignoring genetic markers or symptoms that indicate they may have it too (Jones, 2013, p. 70). For example, Isla (#39) said that after she was diagnosed, she wrote to her relatives in her family Christmas card that she has celiac disease, that it is genetic, and that they should consider being tested. Nobody responded, though she feels sure that others have it after observing their symptoms. She said she felt alienated by their non-responsiveness. Their silence implied, "It's your disease, not mine." (This ideology will be discussed at length in Chapter 5.) Whether accidentally cross-contaminated, intentionally sabotaged, or incessantly urged to consume gluten-containing foods, those with celiac disease live in a day-to-day state of vulnerability. Robert (#12) reflects on a family gathering where he asked his aunt about the cheesecake ingredients. She swore it was her recipe and that there was no gluten in it. The next day, he was sick. He called his aunt who then admitted she purchased the cheesecake and had not checked the ingredients. She either did not fully understand his condition or did not take it seriously, showing how ideologies interplay. Her behavior embodied the gluten-doubt, able-body bias, and the I-Know-Best, ideologies (discussed below). Sorta Scientific Ideologies Realizing that "ninety-nine percent of people who have a problem with eating gluten don't even know it" (Hyman, 2013), in time, Americans may understand the importance of taking gluten free requests seriously, though scientific headlines confuse the public. Misleading "scientific" headlines giving only limited sound bites play a part in perpetuating negative gluten ideologies. Society relies on scientists, the medical community, and the press to synthesize and share new health discoveries and findings, so they may benefit the population at large. "The sheer quantity of science-based controversies in modern society makes them an interesting phenomena" (Brante, 1993, p. 188). Since the 1950's, contradictory scientific data has been a feature in the news, particularly about food and its affect on the human body, and more recently, we are regularly bombarded by it. Scientific discoveries are largely understood to be credible and reliable sources of information, which then crystalize into ideologies and guide meaning. One day a food is maligned, and the next it is upheld as "health food." For example, contemplate how an authoritative voice reporting the news headline, "Gluten-free diet not healthy for everyone" (CNN, 2018) may affect a person who then adjusts her diet based on this "distorted knowledge" (Therborn, 1980, p. 8). Conversely, the headline, "Is gluten bad for you?" seems to contradict the previous headline (Healthline, 2020). Contradictions such as this happen regularly, confusing most audiences. Another headline asserts, "Health issues … are sometimes mistaken for gluten sensitivity" (U.S. News, 2018); therein, the article describes ailments that imitate symptoms of gluten sensitivity, perpetuating the gluten-doubt ideology on those who eliminate gluten from their diet. Scientific ideologies presented in the media often omit valuable information and introduce inaccuracies into public consciousness (Fahnestock, 1998). Scientific fact is a powerful source of firmly held ideologies. Often the public follows surface-level scientific evidence without questioning it. These "facts" may have unintended consequences in relation to food and food sensitivities. For example, the nightly news lead may assert, "More people go gluten free than need to, study finds" (NBC News, 2016), which may cause suspicion among those living with someone following a gluten free diet. Such news reports rarely explore the research in detail, but the headline sound-byte has nonetheless influenced thinking, perpetuating gluten-doubt on the decision to live a gluten free lifestyle. Grace (#17) describes how her husband repeatedly challenged her to eat gluten, asking, "How much can you have? Can't you just have a crumb?" Her husband did Internet research searching for "scientific evidence," to prove her wrong when she resisted. We've examined examples from the popular press and media, but those with gluten sensitivities face another dominant ideology – the I-Know-Best ideology. I-Know-Best Ideologies The I-Know-Best ideology centers on someone feeling superior to the person or people they commune with. This transfers to attitudes about food. For example, Kaya (#54) has a friend that works in a restaurant that she frequents. The friend told Kaya that the chef and the workers in the kitchen say, "What they don't know, won't hurt them" implying that if there is a little gluten in the food, it is OK. Knowing how Kaya reacts to gluten, the friend spoke to the restaurant manager who discounted her concerns by saying, "Don't rock the boat." This reflects an I-Know-Best ideology where the head chef, workers, and restaurant manager have superior intelligence to anyone asking for a gluten free meal. Attitudes like these make dining out a game of Russian roulette for the person with celiac disease. Kaya decided to avoid restaurants all together, and says, "I do not miss the nervousness I had about eating out." Patrons with celiac disease need to trust that their requests for a "clean," gluten-free meal is taken seriously by the server, chef, and even the restaurant manager. While most people look forward to eating out, pairing flavors with wine, and the excitement of what a chef prepares that day, those with celiac disease must assess every ingredient before consuming a single bite. Many restaurants do not offer gluten free dishes, or if they do, they often disclaim that foods served may be cross-contaminated, forcing the celiac disease patron to decide whether or not to eat. This I-Know-Best attitude is illustrated in a report of a chef saying, "People who claim to be gluten intolerant don't realize that it's all … in their heads. … I serve ‘em our pasta, which I make from scratch with high gluten flour" (Moore, 2013, p. 36). Similarly, Emery (#45) describes a NYC restaurant manager's reaction to her request for gluten-free food, saying he "went off about food allergies, and how it's a conspiracy, and how nobody really has it." This illustrates how the burden of proof rests on the celiac disease sufferer, who may react to as little as "100 mg of gluten" (Green & Jabri, 2003, p. 386). Both of these examples illustrate I-Know-Best ideologies where the chef and manager imply they know more than anyone else about gluten intolerance, discounting the need for a strict gluten-free diet, and objecting to patrons asking for it. This attitude depicts the "punishment" that one endures when defying existing ideologies, and ultimately discourages those with celiac disease (and their companions) to avoid going out to eat. Cara (#53) reports, "I just can't do this. Getting this sick is not worth eating out." Madeline (#57) echoes, "I can't believe how little it takes to cause a reaction." The I-Know-Best ideology is further illustrated by Eleanor's (#20) report that a waiter said, "Oh, you're one of those people," when she asked for a gluten-free meal. Skylar (#64) describes a waiter at a fast food sandwich shop who asked her if her gluten free request was a "preference or an allergy," presumably to discern the severity of her dietary needs. Claire (#25) conveys her embarrassment as her table companions listened carefully to her order, as she broke the fit in at all costs ideology by asking for special treatment (discussed below). Now, to deal with it she said, "I usually go in or call beforehand, rather than having everyone sit and listen to my conversation." Most feel vulnerable when hungry, and nothing to eat can cause more extreme responses as shown by Sadie (#41): "When I ordered at a restaurant specifying my needs, and the waiter got to someone else, my dining companion said, ‘I want EXTRA gluten'" thus undermining Sadie's request. Mockery such as this is perpetuated in the following comic: https://sfd.celiac.com/uploads/monthly_2021_06/bizarro_04.webp.9eb48504b367b06d265a0242c963c049.webp Figure 2.2 – High-Maintenance Wants Latte (Licensed with permission from Comics Kingdom (Bizarro).) Figure 2.2 depicts a woman ordering a latte to suit her dietary needs. The barista insults the customer's character, implying "she is self-absorbed and high-maintenance" discounting her request. The barista dismisses the woman and mocks her as one who pretentiously dares to step out of line. The comic suggests that the patron's response to gluten is self-indulging, not physical. It provides another illustration on how multiple ideologies interplay. Here we see the reluctant tolerance, gluten-doubt, able-body bias, and the I-Know-Best ideologies, as well as a sexist ideology that states that women are overly emotional blended with the belief that "gluten" is an acceptable subject for mockery. This comic perpetuates the ideology that the "server knows best" or is the "ultimate judge" of whether or not the patron needs gluten free food, discounting her intelligence, and putting her health at the mercy of the server. The Lord Knows What Is in My Heart Christians refer to bread as the "staff of life." Bread is a sacred food (de Certeau, et al., 1998), and those who cannot consume it to sanctify the scriptures in the Bible feel less pious at best, and excluded from the communal practices of the church at worst. For example, in the Catholic Church, the Pope issued an edict that all hosts must contain gluten (Vatican, 2017). The practice of communion in the Catholic Church emphasizes how the Pope's perception about gluten permeates other levels of social interaction. Specifically, he said: Low gluten hosts (partially gluten-free) are valid matter, provided they contain a sufficient amount of gluten [emphasis added] to obtain the confection of bread without the addition of foreign materials and without the use of procedures that would alter the nature of bread" (Vatican, 2017). The prescribed amount of gluten exceeds the 20 parts per million U.S. standard defining gluten free, and means that Catholic individuals with celiac disease must consume gluten, if they wish to partake of the Holy Sacrament. Reading further in the letter, those with celiac disease are not considered or exempted in this edict. This exclusion has an "othering" effect on the roughly twelve million Roman Catholics who have celiac disease worldwide (BBC.com). Defying the Pope by not consuming the gluten-containing host may cause worshipers to feel sinful. Cora (#36) reports: Rather than taking communion, I just receive the wine at the church because the host has gluten in it. Now the Catholic Church is not going to offer a gluten free host, it is very isolating. The Lord knows what is in my heart, so I just take the wine in my small parish church. Instead of treating communion as a fundamental practice, after being diagnosed and suffering the consequences of taking communion, Cora reluctantly changed her view to see it as a metaphor, and adapted her personal practice to accommodate her dietary needs. The Pope's edict has other implications as well. Others hearing that the Pope endorses eating gluten may not take the person avoiding gluten as seriously. The church is the source of widely-held beliefs (Althusser, 1971) and the implication that a little gluten won't hurt you becomes a dominant truth that transfers from church to other social interactions. Many view the Pope as a person with exceptional powers as the human closest to God. The Pope's host edict ignoring those with celiac disease illustrates the I-Know-Best ideology and the able-body bias ideologies. USDA as a Cultural Influencer The USDA was created to regulate and manage the farming industry in 1862. Eventually, it evolved to provide dietary recommendations to Americans. This happened at a time when men (mostly) were keeling over from heart attacks at a staggering rate. After Eisenhower suffered a very public heart attack in the 1960s, White, the President of the International Society of Cardiology, declared the American public was in the throes of a "great epidemic" called Atherosclerosis (Levenstein, 2012). The public demanded dietary direction and the USDA provided recommendations. In 1968, Senator George McGovern contracted reporter Nick Mottern to write Dietary Goals for the United States, using Harvard School of Public Health nutritionist Mark Hegsted as his primary resource (Taubes, 2001). Hegsted was highly influenced by the research and dietary recommendations of Ancel Keys and modeled Dietary Goals after them. Keys' work advocated that Americans consume only 30% of their diet from fat calories and of that, 10% from saturated fat (Taubes, 2001). These dietary recommendations relied on evidence provided by Keys' controversial Seven Country Study, launched in 1958. Succumbing to public pressure and ignoring other research that yielded different conclusions (Lustig, 2009; Yudkin, 1972), the Food Pyramid became the pervasive model for health and endorsements by the American Heart Association (AHA), American Medical Association (AMA), National Heart, Lung, and Blood Institutes, the National Cancer Institute, the Center for Disease Control (CDC), and the American Dietetic Associations (ADA) solidifying the diet discretion ideology in American consciousness (Levenstein, 2012). Further, as the USDA dietary recommendations were adopted, ideological slogans promoting this way of eating included: Watch your cholesterol intake Limit saturated fats Ask your doctor for lipid tests Eat to live rather than living to eat These slogans became easy reminders to reinforce the recommendations (Charland, 1987, p. 148). Today, the 144-page USDA 2015–2020 Dietary Guidelines delineate what Americans should eat. It provides five suggestions for sustaining health, advocating shifts to eating healthy, and consuming nutrient-dense foods such as fruits, vegetables, protein, dairy, grains, and oils. It states that 177 out of a total of 328 million (U.S. Census, 2019) Americans have diseases that could be prevented by dietary adjustments and physical activity (USDA Guidelines, 2015, p. vii). However, the Guidelines do not mention celiac disease or food allergies. This omission implies that everyone should eat grains and dairy, two highly allergenic foods, another example of the I-Know-Best, able-body bias, and the reluctant tolerance ideologies. It is I-Know-Best because the recommendations come from a governmental entity perpetuating the notion that those in power "know what's best for you;" able-body bias, because it does not allow for the "disabled" who cannot tolerate these foods; and reluctant tolerance because it subjugates those requesting something different from what is written in the recommendations. Yet dairy and gluten avoidance are relatively common. Data from my study indicates that 22% of respondents avoid both dairy and gluten. The Guidelines assert: "Everyone has a role in supporting healthy eating patterns" (2015, p. 63), but the omission of allergies from such a central document discounts the prevalence of food allergies among 60 million Americans (Hyman, 2013). This omission could be one reason that the idea of the gluten-free diet triggers resistance, such as from the book entitled The Gluten Lie, saying gluten intolerance is probably not real (Levinovitz, 2015). This sentiment starts with the USDA Guidelines (by omission) and is magnified through many forms of media, food service providers, and the medical community. Medical Myths Many doctors continue to operate under the myth that celiac disease occurs mostly in white children and rule it out before testing adult patients (Fasano & Catassi, 2012). Some seem to think that people with celiac disease are thin and gaunt, and this is also not universally true. Naomi experienced this reaction from a gastroenterologist who told her "I don't think you have celiac disease. You are tall and you look healthy. Most people with celiac disease are short and thin." Naomi was later diagnosed with celiac disease. Some doctors erroneously believe the myth that children "grow out" of food intolerances as reported by Samantha (#29) who was diagnosed with celiac disease when she was very young. She visited a doctor as an adult who ask her, "Don't you think you've outgrown this by now?" Obviously, she didn't grow out of celiac disease. Similarly, Rose describes a lifetime of illness starting when she was young and was also told she would "outgrow" it. She had stomachaches as a child, thyroid issues, and a miscarriage in her 20s. Finally, in middle age, she flew to a specialized clinic in New York, where she was diagnosed with celiac disease. There, they told her that people do not grow out of it, and that celiac disease was likely the cause of her miscarriage and thyroid problems. She lived with it until middle-aged without even knowing she had it, and likely would not have been diagnosed if she had not been a woman of means, education, and determination. Though celiac disease "is humankind's most prevalent genetically linked disease… [occurring] more frequently than Type 1 diabetes, cystic fibrosis, or Crohn's disease" (Fasano & Flaherty, 2014, Loc. 556), doctors are often untrained in testing for it and are influenced by many of the same dominant ideologies described above. Doctors may rely on sound bites such as everything in moderation, when discussing diet choices in brief appointments lasting an average of seven-minutes (Shanahan, 2017). This over-simplified snippet of advice does not serve those with food sensitivities or celiac disease, yet it is common practice due to insufficient nutrition education in U.S. medical schools and the I-Know-Best attitude (Adams, Kohlmeier, Powell, & Zeisel, 2010; Vetter, Herring, Sood, Shah, & Kalet, 2008). Hailey (#38) describes how her doctor prescribed one pill a day for five days, knowing the pill contained a gluten-binder. Her doctor said it's OK for that short of time. Of course, it isn't OK ever. Physicians' lack of training and reliance on taken-for-granted ideologies exacerbates the desperation felt by those who remain ill and un- or misdiagnosed, and perpetuates the gluten-doubt, and the I-Know-Best ideologies. If a doctor tells us that we can eat everything in moderation, or that we will outgrow allergies, or that a pill with gluten is OK to take, we are hard-pressed to defy that authority and ignore the advice given by our highly paid medical advisors. Don't Mess With Bread In Western cultures, eating represents a fundamental connection between a person and his or her environment (de Certeau, Giard, & Mayol, 1998). From garden to table, "food is forever bound to representation or culture" (Foust, 2011, p. 354). A brief review of Western celebrations and holidays confirms the centrality of gluten. In most American weddings, the bride and groom feed each other a piece of wedding cake to symbolize their unity. The cake is then distributed to guests who join the celebration (The Spruce, 2018). When that cake is chocolate, it may even elicit a sexual response because chocolate cake is associated with intimacy (LeBesco & Naccarto, 2008). Similarly, bread's symbolism far exceeds its function as a food source. It is often treated as a sacred food (de Certeau, et al., 1998), and purging it from one's diet can present a host of religious, spiritual, and cultural complications. For instance, weddings in Poland traditionally include a loaf of salted bread and wine for the couple to eat and drink, symbolizing a life of abundance (Wedding, 2018). At wedding receptions in Russia, the bride and groom take a bite of bread held by a third party. Whoever takes the biggest bite is deemed the head of the household (Wedding, 2018). In France, the bride and groom dance under a brioche and then eat it (French Today, 2018). In American Appalachia, guests bring stack-cakes (pancakes) and pile them on a plate, adding apple butter between each layer. The couple's popularity is determined by the height of the stack (History, 2018). In America, when the bride and groom feed each other a bite of the wedding cake at their wedding reception, it symbolizes taking care of each other in their new life. In addition to being an integral part of weddings in some cultures, bread is also a mainstay in the family dinner. Bread is such an important aspect of the Western meal that "…one does not joke around with bread." It's "the necessary foundation for all food…" (de Certeau, et al., 1998, p. 87). Ideologies impact rituals and practices such as ceremonies or traditional menus, which provide comfort and stability (Boyer & Lienard, 2006). Further, sharing indigenous food with other community members can perpetuate valued customs and rituals. "To live on one bread and one wine that is, to share food, is …a way of signifying that one belongs to the same family" (Montanari, 2006, p. 11). Bread has been an integral part of the meal for all classes of society (Montanari, 2006). Extreme dietary changes disrupt traditional practices and challenge firmly held "truths." For example, peanut butter and jelly sandwiches on white bread have come to symbolize Americana and those who shun "white bread," are considered elitist or health-obsessed. Kaylee (#52) reports, "Some people don't believe I'm happy not eating bread, and make me feel like I should [eat it]." Her comment echoes how in our western culture bread symbolizes normalcy. In fact it is so ingrained in our culture that it is a metaphor for many things such as: Breaking bread with another, which signifies human bonding rituals. The greatest thing since sliced bread refers to an innovative invention. Knowing which side your bread is buttered on implies knowing who is paying your way, bread is a synonym for money, and man doesn't live by bread alone means there is more to life than foraging a living. Because I Said So Agency refers to how much power a person has in a given situation. For example, traditional high agency is awarded to people in a dominant position, such as the head of the household, the income producer in the home, or the homeowner. These elements yield implied power. Those in a subordinate position have less agency, or rights to speak out for themselves to demand that their needs are accommodated. Those without agency often "go along to get along" and suffer the consequences. They try not to make waves or cause rifts. In the interviews, I asked the question, "How has being gluten-free affected your position in the household?" Many told stories of how the family stepped up to help the person who needed to follow a special diet such as Victoria (#15) who said, "My family always puts my needs first." Or Peter (#34), who says, "My family works hard to keep me from getting sick." Madelyn (#37) said, "my son labeled a portion of the pantry: ‘Mommy's special foods.'" These examples show functional family environments where members have agency, and where their needs are taken seriously. Contrastingly, some conveyed an absence of agency as they described living in households where others consumed gluten, causing them to be cross-contaminated and repeatedly sick. For example, Alex (#1) describes the following scenario: I remember when I first started cooking gluten-free in a shared household with my parents. I had this habit of taking out freezer paper and laying it on the counter to have a nice safe working environment. I cooked on it with my own dedicated pan, spoon, and pot. One day I went in the kitchen to make breakfast. I started fixing my stuff and there was a crumb on the counter and I thought it was almond meal. It looked like almond meal, something I've been making. I picked it up and put it in my mouth. I wondered where the heck my spoon was and it looked over in the sink and there was my dedicated spoon covered in sticky, white, gooey stuff. And all of a sudden it dawns on me and I get the sinking feeling. My mom had used my pot and my spoon and had made cream of wheat. What I had put in my mouth was cream of wheat! She used my utensils and contaminated them. I thought, "Oh my God!" Yeah, that day didn't end well. Alex describes a situation where he had low agency. His mother didn't respect his need to have dedicated utensils, and used his spoon for her cream of wheat, causing Alex to be sickened. His absence of agency ultimately caused him to move away from his parents into a home of his own. Agency is situational. For example, a person may have a high level of agency while at home, but have low agency in someone else's home, or other social situations. The absence of agency ideology is activated when a person is in a situation where they feel they are powerless to exercise or to assert their needs, or when someone mandates it's this way, "because I said so" without listening to alternative reasoning. Exclusionary Etiquette Exclusionary rules of etiquette powerfully impact people with gluten sensitivities. The exclusionary etiquette and the fit in at all costs ideologies go hand-in-hand. Mila (#10) narrates a situation she heard about in an airport where food was used to mitigate tension. She considers how, as a person with celiac disease, she would not have been able to participate: There was a flight that was delayed, and it was right after 9/11, and somebody announced that there was a need for an Arabic translator at gate whatever and everybody got a little scared. And then the woman who stepped forward to be the Arabic translator discovered that it was an old grandmother who was visiting her grandchildren in this country, and she just needed help understanding what was going on. And not only that, but she had cookies. And before they knew it, instead of being afraid of this old Muslim lady, everybody was sharing her cookies. And I thought, ‘How wonderful it is that we can share the gluten-containing food to make it clear that we are all one people.' And I just thought, ‘if I had been there, I would've been hiding in a corner somewhere, and they would've thought that I was scared, or unfriendly. Mila's story illustrates a social dilemma when one cannot explain a dietary issue because of a language barrier, and the lasting negative impression of refusing the food. Exclusionary etiquette ideologies mandate that we take what is offered to us, a cultural practice that implies goodwill and acceptance, even if we may suffer an autoimmune reaction to the cookie's ingredients. By not taking the cookie, she would risk offending the elderly woman. Taking a cookie would require that Mila handle gluten, and depending on her level of sensitivity, this gesture could cause devastating results. Alternatively, accepting a cookie and tucking it in a napkin to be discarded later would also present a risk of contamination. Rather than risking a social infraction, Mila may have felt it would be better just to take the cookie and suffer the consequences. Exclusionary etiquette rules do not contemplate food sensitivities. Rather they require that guests should consume the foods offered by the host or hostess, as Vivian (#48) notes, "It is insulting to the host for the guest not to eat. It looks bad and makes people feel uncomfortable." This punctuates a long-held belief that cooking is a labor of love, and consuming the food means sharing the love. Consider the effort of bread making, a staple at most meals: mixing the dough, kneading, rising, punching down, forming it into a loaf, rising again, baking, and cooling. It takes several hours from start to finish. To reject the bread and, thus, the hours of labor can be a personal affront. Food preparation often symbolizes the mother's love for her family (DeVault, 1991). Cooking is rich in tradition and ritual, bringing to mind the women spending the holiday carefully preparing food for the festive dinner (de Certeau, et al., 1998, p. 153). The expression of love transfers from the food made by the women, to the food consumed by the loved ones. This sentiment is echoed by Riley (#65): My mother-in-law made a bunch of different foods for Thanksgiving, and I couldn't eat it, and she was offended that I wouldn't eat anything but the ham … that was pretty much it. She didn't understand that I wouldn't eat the other foods [to preserve] my safety and my health. In this example, long-established traditions override objective thought on the part of the mother-in-law, possibly "influenced by [her] own rhetoric of justification and by the ideological consolidation that prevailed" (Mills, 1962, p. 27). The mother-in-law's plans and expectations for the Thanksgiving meal were disrupted by the daughter-in-law's special needs. From the mother-in-law's perspective, she labored over the preparation of the meal, likely using recipes that were passed down in her family for generations that she hoped to give to her daughter-in-law. The mother-in-law's food preparation practice constituted an act of love that was rebuffed by her daughter-in-law. "We eat what our mother taught us to eat—or what our wife's mother taught her to eat" (de Certeau, et al., 1998, Loc. 3969); thus, rejecting the traditional foods implied non-acceptance of the mother-in-law's family, and a breach of traditional etiquette rules. When a guest in someone's home, we are expected to eat the foods offered by the hostess, and to compliment her on the foods. Refusing what is offered whether cake or tea, is considered an insult. Rules of etiquette provide guidelines on how we ought to live. Not following them leads to punishment. As Dustin (#46) states, "If you don't eat the food provided by the hostess, you won't be invited back." Cara experienced this when she and her husband were not invited to a family function. When asked why they were not invited, her family member said, "Well, we're eating." For this reason, celiac disease can lead to a diminished social network. Dustin continues to explain that her in-laws no longer include she and her husband in dinner invitations. They told her, "We won't eat what you can't eat in front of you." This sentiment ignores the fact that there are many gluten free alternatives they could serve instead. The in-laws seem to emphasize what they want to eat over the social elements of a shared meal. Rules of etiquette specifically dictate behaviors when handling bread at the table. When no bread plate is present, one is expected to place the piece of bread on the left side of the table (Baldrige, 1990). Crumbs on the left side of the table could cross-contaminate the neighboring diner who may have celiac disease. Bread is to be used as a tool to sop gravy or to move peas on a fork (Baldrige, 1990). If the breadbasket is sitting to your right, it is your duty to cut the loaf (holding it in the bread cloth) and pass it to the person sitting on your right (Baldrige, 1990). These rules could pose a dilemma for the person with celiac disease. First of all, it is considered impolite to discuss health problems at the table, so an explanation is impossible. Handling the bread, and having the crumbs from the basket fall onto the plate when passed would potentially contaminate the polite diner's plate. Finally, the person with celiac disease would have no way to sop gravy or to put peas on the fork, but after being contaminated with crumbs would likely elect not to eat the food on the plate at all. This poses another problem. Waiters do not typically take full plates back, even if the silverware is displayed in the "I'm finished" configuration. They may exclaim, "Is there something wrong?" Which, of course there is, but it would be rude to elaborate. Summary and Sneak Peek at Future Chapters This chapter discusses various ideologies and how they drive behavior. As you contemplate what you have read so far in Chapters 1 and 2, ask yourself, what ideologies or given "truths" do you and those around you live by? Are they serving you? Are they really true? How have your "truths" changed with your understanding of celiac disease and food sensitivities? Chapter 3 provides examples of how ideologies collide in public settings. Chapter 4 considers how the body is a battleground for those who live with food sensitivities that cause short- and long-term misery at the smallest infraction. We'll examine how society pressures us to have "perfect bodies." Chapter 5 brings the global, familial, and individual elements together to discuss the commensality (the act of eating in a social setting) conundrum. In Chapter 6, we'll examine how an individual adapts to a new definition of homeostasis. Chapter 7 discusses individual transformation, providing many examples from study participants of how lives were adapted to live gracefully with celiac disease and food sensitivities. Chapter 8 goes into detail on how to use the language of ideologies to affect a positive change with loved ones. The next chapter, "Share the Wealth" offers useful strategies offered by study participants on how to navigate life, and finally Chapter 10 discusses how we collectively can take action to change laws such as the American Disabilities Act, so our needs are accommodated more readily in restaurants and institutions. In sum, the book examines virtually all of the social aspects of living with food sensitivities and celiac disease. Summary of Ideologies in Chapter 2 Ideology Description Chapter Reluctant Tolerance "I understand people have gluten intolerance, and those people annoy me." 2 Gluten-Doubt "I don't believe you are that sensitive!" 2 Able-Body Bias Where food served (anywhere) that does not consider those with sensitivities. 2 Sorta "Scientific" Basing opinions on soundbytes that don't tell the entire story. 2 I-Know-Best "My opinion about everything is "right" and you are "wrong." 2 Exclusionary Etiquette Etiquette rules/expectations that may cause peril for those with special needs. 2 Absence of Agency Where someone has no say, and when his or her special needs are not honored. 2 Sacred Bread Bread is a sacred food, both for religious sacraments, and at the dinner table. 2 Discussion Workshops with Dr. Duane Join Dr. Duane in the step-by-step transformation process of living gracefully with food allergies. We start by identifying ideologies on several fronts that make life challenging. The first two chapters discuss broad global constraints impose by religion, the government, and other institutions. As we dig into future chapters, we'll learn how global beliefs translate into our interactions with friends and family, and with the way we think ourselves. By gaining a deep understanding of these "truths" or "beliefs," we can challenge them, re-strategize our responses, and ultimately transform and empower ourselves to live optimally with new "truths." Ultimately, participants will be equipped with ways to navigate the gluten-free, food sensitive lifestyle. These fee-based workshops are designed to help you take the concepts from the book and apply them to your life. Group sizes are limited to encourage enriching discussions. Awareness is the first step toward making a positive change. The next step is to have a plan, and finally to implement the plan. Please go to (www.alternativecook.com and click on Discussion Workshop Signup). Forum Questions: 1. How have you experienced the Reluctant Tolerance, Gluten-Doubt, Able-Body Bias, Sorta "Scientific," I-Know-Best, Sacred Bread, Absence of Agency, and Exclusionary Etiquette ideologies discussed in this chapter? 2. What used to be "true" for you but isn't your "truth" anymore? How has that affected you and your relationships with those whose "truths" haven't changed? Copyright © 2021 by Alternative Cook, LLC Continue to: Gluten-Centric Culture: The Commensality Conundrum - Chapter 3 - Where Ideologies Collide In Public Settings Back to: Gluten-Centric Culture: The Commensality Conundrum - Chapter 1 - Are You Kidding? ___ References in Chapter 2 ABC. (2018). Jimmy Kimmel asks what is gluten? Retrieved from https://abcnews.go.com/Health/video/jimmy-kimmel-asks-what-is-gluten-23655461 Adams, K. M., Kohlmeier, M., Powell, M., & Zeisel, S. H. (2010). Nutrition in medicine: Nutrition education for medical students and residents. 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Celiac.com 04/15/2022 - This is the continuation of the book Gluten-Centric Culture, the result of a nation-wide study conducted by Dr. Jean Duane. Chapter 1 opens with the question: How do I gracefully navigate social scenarios with people I love without alienating them or compromising my health? Chapter 2 studies the different cultural norms perpetuated by religious beliefs, government, schools, rules of etiquette, the media, etc. to understand why there seems to be resistance when we disclose to people we need to maintain a gluten-free diet. Chapter 3 examines venues where the long-held “truths” discussed in previous chapters collide in the doctors office, at the grocery store, at school, and at church. Chapter 4 segues to how women’s bodies are particularly challenged and scrutinized in our society. The present chapter looks at family and extended family situations where food sensitivities sometimes interfere with our ability to lovingly interact. The first step to change is to understand the situation. The scenarios from Dr. Duane’s nation-wide study illustrate the many ways that deeply seated beliefs must be re-examined when diagnosed with a disease or living with food sensitivities. The next step is to assign language to call out behaviors and attitudes that do not serve us. The language presented in this book under the main heading of “ideologies” including sacred bread creeds, gluten-doubt beliefs, reluctant tolerance practices, I-know best attitudes, etc. (illustrated in previous chapters) helps us to communicate how our gluten-centric culture is the reason a gluten-free lifestyle is challenging in our society. Ultimately, those living with restrictions take initiative to develop functional strategies, to change attitudes in order to thrive. That is the subject of forthcoming chapters that include inspiring stories of transformation from study participants. Share your gluten-free lifestyle story! Dr. Jean Duane is conducting interviews to be used on her upcoming podcast. See below for details on how to sign up. We’d love to hear from you! Figure 5. 1 – Already really annoying (Licensed with permission from Cartoon Collections.) Jean’s Story - A Thanksgiving to Remember One of my long-time friends invited my husband and me to join her, her husband, her daughter, and her daughter’s children for Thanksgiving in Dallas. There was a time when we all lived near each other and shared in daily life. I looked forward to seeing them again and felt very grateful for being included. My dietary needs had been discretely addressed by my friend’s daughter, the hostess of the dinner, in a series of thoughtful emails inquiring what would be safe for me to eat. I was reassured with her concern and did not bring my normal array of foods. I was further encouraged when I arrived for Thanksgiving dinner to see that my friend’s daughter had set aside a plate of greens with sliced apple and raw walnuts on top for me. It was a compassionate gesture, and I felt included and loved. The husbands of the younger set decided to forge a new Thanksgiving tradition using the turkey fryer in the backyard. They removed every food they could scavenge from the refrigerator and prepared it to fry. A bag of flour was plunked on the counter, as guests eagerly dipped Oreos, macaroni and cheese, ice cream, pickles, baby food—anything they could find—in the flour. A white dust covered the counter where the Thanksgiving foods were sitting, and flour particles were visible in the air. My salad sat uncovered a few feet away. In that moment, all of the preparations made to provide a “safe” meal for me were erased. My salad was tainted with flour dust, as was the air I was breathing in that warm, cozy kitchen. What had moments before felt like a loving, compassionate environment suddenly became adversarial, with me fighting to avoid cross-contamination. I faced a conundrum coupled with that sinking feeling, realizing I was quite hungry – the bacon wrapped almond-stuffed dates that I risked eating (a risk because they were baked in an oven that was also used for baking gluten-containing foods) had long worn off, that there was literally nothing safe for me to eat for dinner. Everything was contaminated with flour dust. I didn’t even have the usual peanut butter energy bar in my purse to sneak-eat in the bathroom. The event was held in my friend’s daughter’s home, where I felt welcomed, but with whom I really hadn’t spent much time. Though she had good intentions, my plight was the least of her concerns. Nearly nine months pregnant, she was trying to entertain a group of 26 people—a group who was developing fun new traditions. The last thing she needed was a needy “mom-friend” asking for special dispensation. The majority of the guests were enthusiastically rolling everything in flour and plopping the blobs into the fryer. My feelings shifted from inclusion and love to isolation and fear. Worse yet, even remaining in the general area where the party was taking place posed danger for me, as I risked breathing airborne flour. I had recently learned that I react to airborne flour from sitting in a pizzeria for two hours. Leaving the scene would be further isolating, making me feel like an outsider. And wearing a mask (I had one in my purse) would be humiliating. (This was before COVID.) So, I moved to the adjoining den where the football game was on TV, pulled my turtleneck over my nose and discretely breathed through it. During dinner, I pretended to eat, switching plates with my husband when nobody was looking, so it appeared that I ate the food reserved for me. I starved until we got back to the hotel late that evening and ate from my “safe” foods before retiring. Cultural Practices at Play in this Scenario Several ideologies/beliefs caused my discomfort at that Thanksgiving setting. First of all, the reluctant tolerance practice was at play as my friend’s daughter tried to accommodate my needs. She had a house full of people she was cooking for, while she was very far along in a difficult pregnancy. I realize that I am projecting the “reluctant” part on her because she did try to accommodate my needs, but I felt like an inconvenience with my restrictive dietary requirements. The able-body bias was in play as the younger set got the flour out and started coating everything in the fridge, sending clouds of flour dust in the air. They didn’t give a wit (and probably didn’t know) about my severe reaction to flour. Further, they likely wouldn’t have believed it, since they might have perceived it as an oddity. My friend’s daughter’s kitchen became unsafe for me when I was put in harm’s way having to breathe the dust. As a friend trying to fit in, it wouldn’t have been acceptable for me to say anything, plus I didn’t want to rain on their parade or to make a scene. Absence of agency was also a factor in this scenario. As one of the older set in a place where the young new families were establishing rituals they would likely reenact for years to come, I didn’t want to be the “weird friend” that they seldom see asserting myself to demand a safe environment. As it is, we stayed in a hotel rather than in the home of a gluten-consuming family—a safe move for me, but an isolating move in their eyes. Exclusionary etiquette rules were also in play. I couldn’t very well hide in the other room and be anti-social. The whole point of us being there was to share with everyone, not to cower from the festivities. Nor could I shun the uncovered food set aside for me in such a loving manner. Finally, and this reveals my inner insecurities, but the dietary discretion practice was also activated. I was very aware of my dietary disabilities, and how it made me different from everyone else who appeared to be able to eat anything. The whole situation put me in a quandary, because I didn’t want to assert myself. And because I hadn’t yet come to terms with my disease enough to do something constructive to deal with it, I suffered through in hungry silence. Commensality – the act of sharing food with others. Conundrum – a difficult situation with no clear solution. The Commensality Conundrum Whenever anyone with celiac disease or food sensitivities is faced with sharing food with others at the dinner table, they must struggle with the question: How do I come to terms with being gluten free with my friends and family, particularly when food and gluten related beliefs are constraining us? Since food is served at nearly every gathering, the commensality conundrum presents itself in every aspect of life. While spending time with family, study participants described additional “vexing venues” or places for potential conflict, such as the immediate family table, the extended family table, restaurants, and even the bedroom! Respondents describe how their food allergies or special diets disrupt family traditions, often triggering ridicule by other family members (Bentley, 2005; Masia, Mullen, & Scotti, 1998). For someone with celiac disease or a non-celiac gluten sensitivity diagnosis, this is particularly complicated because sharing food signifies belonging in family and community (Montanari, 2006). Indeed, individuals with celiac disease or non-celiac gluten sensitivity risk alienation if they do not participate in food festivities or religious rituals (Curtin & Heldke, 1992); or terrible health effects like autoimmune disorders (Green & Jabri, 2003), anaphylactic shock, and even death (Cummings, et al., 2010) if they do. Cherished food rituals shared with family members are challenged when someone has severe dietary restrictions. The Family Meal is Complicated! I was asked to make dinner for some of my older friends. Though we agreed on a Mexican themed meal, they called to tell me they couldn’t eat “hot” foods. So, I adapted my signature recipes to use “mild” versus “hot” chilies in the rellenos. I put the red sauce on the side rather than baking it into the enchiladas like I usually would. While sitting at the dinner table, I noticed my companions weren’t eating much. Neither was I. At that time, I hadn’t honed my cooking skills to make alterations. The “mild” flavor adjustments I made to accommodate their taste buds made my signature dishes bland and boring. I felt compromised as a cooked with all those substitutions, and a little irked that nobody raved about the foods I made. This is how other cooks feel, I’m sure, when altering their signature recipes on the fly to accommodate someone with celiac disease or food sensitivities. When considering the tasks involved in creating a pleasant dinner party, such as “planning, shopping, scheduling, preparing, serving, navigating table interaction, cleaning, packing away, … stocking supplemental ingredients, as well as knowing and accommodating family member diets, preferences, and allergies” (DeVault, 1991, p. 28), the family meal is a “complex social event” (p. 3). Traditional American meals like Thanksgiving dinner regularly include multiple gluten-containing dishes like stuffing, dinner rolls, green bean casserole, and pies. This requires those with celiac disease to inquire about ingredients prior to consuming foods, as described by Stella (# 21): There are times when I have felt uncomfortable because I feel like I am making other people uncomfortable. We were at dinner and when I started asking questions about ingredients, I could see that others around the table were getting annoyed. I felt like I embarrassed those around me, but I felt uncomfortable about eating unfamiliar foods without asking. I didn’t feel uncomfortable enough to stop; I had to continue to ask my questions, but I felt like I was holding everybody up with my questions, trying to figure out what I can or cannot eat. Stella could feel the unease among her family members, but had to persist in order to stay safe. This illustrates the ceaseless endeavor that anyone with food sensitivities or celiac disease has to maintain in order to ensure prolonged health. When a family member is diagnosed with food sensitivities or celiac disease, high-functioning families work together to process the new information and adjust their practices accordingly (Koenig Kellas & Trees, 2006); whereas, dysfunctional families are likely to create a hurtful, vulnerable environment for the ill person (Vangelisti, Maguire, Alexander, & Clark, 2007). Familial dysfunction occurs when members cling to bygone beliefs. They resist changing their own opinions and cause grief to anyone who attempts disruption, as Kaylee (#52) reports. When requesting gluten free foods at a gathering, her sister joked, “Leave it to you to be difficult,” illustrating the reluctant tolerance practice of begrudging compliance and the gluten-doubt belief. Whether harmonious or disharmonious, people living together typically need to cope with the needs of the disabled person or face relationship changes (Frank, 1995). To cope, family members need to work together to revise the “truths” and narratives they tell each other and themselves. Revised stories told among family members help to redefine the experience, creating the prospect of familial functionality. So, rather than saying, “leave it to you to be difficult,” a dysfunctional statement, the sister could have lovingly said, “What can I do to help you eat safely at this family gathering?” Statements like these set the tone for other family members. When it comes to celiac disease or food sensitivities, a family’s degree of functionality plays out around the dinner table, as old beliefs collide with new “truths.” Restrictive diets can be frustrating for all parties involved and can impact every aspect of life and family culture. Women reported less satisfaction with social aspects of their lives after long-term adherence to the gluten free diet (Hallert et al., 2002). They felt isolated from food-related events and relegated to preparing meals at home for themselves. People with cooking skills can usually adapt to a gluten free diet in the home, assuming other household members cooperate, such as in the case of Kevin (#33) whose wife said when he was diagnosed, “I’ll support you, and we’ll get rid of all the gluten in the household.” In uncooperative households, some celiac disease sufferers succumb in order to fit in and eat the allergenic food, even if it means becoming ill as a consequence. In fact, 40% of people with celiac disease do not comply because it’s too challenging (Jackson, 1985). Family life for the food intolerant can be a hard road because of both the “trial and error” associated with determining which foods cause problems and the social consequences of being different (Nettleton, Woods, Burrows, & Kerr, 2020, p. 303). Both disclosure and deception carry the risk of social stigmatization and alienation from family and friends as reported by John (#2), when he sits down to dinner: I feel embarrassed, like I’m being a pain in the ass, inconveniencing other people. That’s what I hate the most about this. I think part of the reason for that is because this whole ‘gluten free’ thing is such a fad. Everybody has a story about their college roommate who is gluten free until [he] orders a Caesar salad and [eats] the croutons. So, a lot of people don’t take it seriously. John feels scrutinized at the dinner table because he feels that many don’t understand that his dietary requirements are life-and-death choices, not a fad. This illustrates both the reluctant tolerance practice and gluten-doubt belief. John’s feeling like a “pain in the ass” is likely from family and/or friends “reluctantly” tolerating or doubting his dietary needs. Crumbs in the Kitchen A non-gluten free home for those with celiac disease is similar to an alcoholic working in a bar, or living in a home full of liquor. The threat of succumbing is constant for the recovering alcoholic, causing high levels of anxiety because of the ever-present reminders (Groh, Jason, Davis, Olson, & Ferrari, 2007). Similarly, a person with celiac disease or food sensitivities dodging gluten crumbs or flour dust whenever preparing or consuming a meal can cause ongoing anxiety. When describing food allergies, events triggering anxiety include potential exposure to allergens, and the possibility of having nothing safe to eat (Mandell, Curtis, Gold, & Hardie, 2005). If a person with celiac disease lives in a “hostile” environment, where others continue to eat gluten, this can cause underlying, unresolved anxiety not to mention on-going physical reactions. Further, the manner in which the person with celiac disease processes conflict is significant. Gianna (#50) describes a hostile scenario in her non-gluten-free home: Oh, I get gluten contamination all the time, especially from my husband. And he doesn’t realize it. He’ll be making a sandwich, and he will grab whatever jelly he wants. He shoves the knife in, spreads it back and forth on the toast and shoves it back in the jelly. So, it is cross-contaminated. That little teeny-tiny bit will bother me. It will make me sick. Because her husband adamantly refuses a gluten-free household, Gianna will live in a threatening environment and a permanent state of apprehension until she takes initiatives to protect self-health. Her husband’s response portrays the I-know-best attitude to his wife’s needs, resulting in her being sickened on a regular basis. Gianna says his lack of cooperation causes her daily strife. To avoid conflict, she dodges the foods that could possibly be contaminated such as the open jelly in the refrigerator. This scenario also illustrates her absence-of-agency in the relationship because she does not have the power to demand that her husband honors her needs. As a result, she lives with the daily risk of contamination, because she and her husband have not come to a mutually agreeable resolution. Jean’s Story - Daddy’s Diet In many families, the father’s dietary requirements become the fare for the rest of the household. My father had his first heart attack at age 55. He endured three bypass surgeries over 20 years. He had stents inserted in the arteries around his heart in between bypass surgeries. On three separate occasions, doctors split open his sternum. Long arteries were extracted from his legs and sewn around his heart, resulting in three-foot-long incision scars, ankle-to-thigh. Recovery from each bypass surgery took six months of rest and physical therapy to regain muscle strength. Over time, plaque would build up in his arteries, and he would start the process all over again. He took all kinds of drugs including beta-blockers and statins, and he regularly put nitroglycerin under his tongue to thwart imminent attacks. Nothing worked until a doctor told us that dietary choices were the cause of his heart disease. After that, our family became vegetarian overnight. We suffered through Momma’s experiments with soy protein (which came in a milk carton and tasted like cardboard), beans (which she’d never cooked before and we promptly rejected), and egg dishes made only with whites. Despite our grumbling, it worked. Daddy lost weight, began running, and enjoyed good health. But compared to the rich American diet we were accustomed to, the vegetarian menu left us feeling deprived and unsatisfied. To protect Daddy, we identified certain foods as culprits the doctors told us caused his heart to clog. We pinpointedegg yolks, saturated fat, cocoa butter, coconut oil, butter, shortening, whole dairy products, and red meatsand eliminated them from our diet. My father’s diet was an obsession for us, becoming an emotional jumble of love, and frustration for my mother whose “job” it was to fulfill his dietary requirements. Everything we ate was a surrogate for something else: meatloaf made with turkey burger and oats, rather than hamburger; vegetables cooked in broth rather than sautéed in butter; cookies baked with oil rather than butter. Those were tough years because we all missed the foods we craved. In our case, the father’s needs dictated the household’s diet, an example of how the head of the household tends to have the most agency. And, even in our modern world, food preparation and dietary adherence is often still considered a woman’s role in traditional marriages. Years later, when I was diagnosed with celiac disease, I thought, “Here we go again!” I didn’t want to suffer through another phase of dietary deprivation! Daddy’s diet experience influenced me to attend cooking school and to develop recipes with tasty alternatives. Patriarchal dietary preferences influence the fare in Ava’s (#7) parent’s home where she observes, “Mom is sick all the time, and she has been hospitalized twice. She needs to be gluten free, and because my dad doesn’t want to, my mom hasn’t gone totally gluten free. She eats half-and-half [half gluten and half non-gluten containing diet].” Ava is certain her mother has celiac disease. Since her father refuses to eat a gluten free diet, her mother feels strongly that it is her duty to cook what her husband wants to eat, and continues to cook and eat gluten-containing foods, thus suffering celiac disease-related symptoms. Further, since gluten free foods are expensive, some families cannot afford to prepare separate meals or don’t have the time. A celiac disease sufferer might decide, for example, that it is easier to comply with her spouse’s desires than fight for change. Many respondents report similar observations, indicating that family members preferred to ignore celiac disease rather than adopt the restrictive gluten free lifestyle. Nevertheless, the burden of compliance often falls on the shoulders of the woman in the household (Crowley et al., 2012). This is true in Robert’s (#12) household. An older gentleman, Robert said that he knows nothing of the nuances of the diet because when he was diagnosed years ago, his wife researched and took classes to learn how best to feed him. Possibly this is a generational phenomena, or perhaps it is a patriarchal attitude, or maybe it is the way his wife shows her love for him. Whatever the reason, Robert felt that understanding food and his diet was his wife’s responsibility. His health or demise is directly correlated to his wife’s ability to finesse a healthy diet for him. Sometimes children exert higher levels of agency, causing strife in the parent-child relationship, as reported by Ava. She describes a contentious situation with her adult cohabitating daughter, before coming to terms with the seriousness of her diagnosis: She gets ‘pissy’ and she says things like, ‘God this has nothing to do with me, I can’t bring anything into the house.’ She wants to bring gluten-containing foods into the house to eat with her friends in her room. I had to put my foot down. I said, ‘you guys can’t eat gluten in the house. If you and your friends want to eat gluten, you have to do it at a restaurant, or you have to stay outside. You need to rinse your hands off. Don’t even come in here and touch my doorknob. You just need to leave that crap outside. If you’ve had a cookie that you had in your room, and I come in there and love on you, or if you come out and kiss me, then I’ll get sick.’ Constantly feeling pressure to allow gluten does not cultivate a meaningful relationship, and this negativity can disrupt familial relationships (Arroyo and Segrin, 2013). Ava reached the breaking point, causing discord with her daughter. She describes getting continually cross-contaminated by her daughter’s negligence. The daughter was not taking her mother’s needs seriously. By saying, “God, this has nothing to do with me,” Ava’s daughter demonstrated a non-adaptive yours not mine principle, making the disease “her mother’s” alone. This illustrates how some family members do not acknowledge the hereditary nature of celiac disease. Interestingly, Ava also describes her daughter’s small stature, halitosis, and migraines, which are all symptoms of celiac disease (Wangen, 2009). Ava describes her resolve to require that her “house be the place that [she is] safest,” taking ownership of her safety and her disease – no matter how her daughter responds. Layla (#65) describes her experience of living with risk of accidental exposure while living with her husband in her mother-in-law’s house. Layla was highly sensitive to gluten and her mother-in-law’s kitchen became a “vexing venue” because her mother-in-law refused to cooperate with Layla’s dietary needs, leaving open containers of flour-containing foods all over. The mother-in-law was highly inconvenienced by Layla’s requests. To avoid the kitchen Layla’s adaptive strategy was to keep her and her husband’s food in her bedroom. She reports, “[My mother-in-law] wanted to have gluten-containing flour in the kitchen. It really concerned my husband and me with having open flour on all of our foods; so, for at least a year, there were problems with how she handled her kitchen.” Here, the mother-in-law exercised a high degree of agency and did not allow Layla or her husband to have a say. She also activated gluten-doubt, not believing that Layla was so sensitive. Needless to say, there was a constant rift between Layla and her mother-in-law. Conversely, Grace (#17) describes a more cooperative kitchen scenario, and though they both had good intentions, adaptations ultimately had to be made. When I was first diagnosed, my husband obviously didn’t have to deal with it, so he would still eat his gluten, and it was just too stressful because of the cross-contamination. We had two different toasters, two different jars of peanut butter, two different everything. And then there were crumbs everywhere, and finally we went to a gluten-free household. Grace describes how she and her husband changed their habits to avoid cross-contamination. After struggles and reaction episodes, they ultimately decided to implement a gluten-free home. This couple quelled Grace’s anxiety by coming to terms with her dietary restrictions through cooperation, together shifting their home-based food practices. The home kitchen and dinner table are prime “vexing venues” for those with celiac disease. But the challenges of gluten free adaptation carry over into all types of relations—even intimate ones. Jean’s Story - Glutenous Interruptus I couldn’t get enough of him. His beautiful blue eyes, soothing voice, and confident manner. He was a charmer, anticipating my every need. My favorite flower, a light pink rose he gave me sat next to my place setting. He remembered the drink I enjoyed and ordered it for me. We were at a posh restaurant that had a harp player playing Vivaldi. The music wafted to the candlelit room where our table was. Floor-to-ceiling curtains billowed in the light breeze and we could hear the ocean’s waves from beyond. He was so engaging, asking follow on questions to everything I mentioned. Our conversation volleyed in a give and take with so many common interests. He smiled often and I remember thinking, “I am so happy this man is in my life.” After dinner, we adjourned to a private room. To continue the mood of the restaurant, I opened the door of the balcony to feel the ocean breeze and put on some soft Portuguese jazz. I gave him some bourbon neat and sat next to him on the couch. He moved closer, his face near to mine. I could smell the intoxicating aromas of bourbon, aftershave, and a hint of cigar smoke. I closed my eyes and leaned my head back in anticipation of a kiss. His lips came so close I could feel mine tingling. I could feel his breath as he exhaled gently. Suddenly I remembered that he had eaten a lot of bread at dinner and that his mustache was likely full of gluten crumbs. Abruptly, I got up and said, “I’m really sorry, but before we kiss, you’ll have to go wash your face,” evaporating that intimate moment. In the Bedroom - Don’t Kiss Me! If you want to kiss me, wash that beard. —Beasley, 2011 Couples interact with each other in different ways. “Interactive styles” can determine whether the relationship is functional or dysfunctional (Brown, 2011, p. 119). For example, when a partner does not attempt to understand or incorporate the dietary restrictions of the other, that disengagement ultimately results in relationship dissatisfaction. By contrast, couples that engage in a “cohesive” style of interaction have better outcomes, where both partners participate and understand the dietary requirements (Brown, 2011, p. 113). How couples handle each other’s needs is a harbinger of how their relationship is going. Survey participants frequently reported unhappiness with relationships, when the household wasn’t completely gluten free and cross-contamination was a constant threat. On the other hand, many respondents reported harmonious, cooperative relationships such as Stella, who describes her husband as follows, “He is wonderful. If I don’t ask immediately upon entering a restaurant, he’s the first one to say, ‘my wife needs a gluten free menu.’” Lillian (#58) reports being cross-contaminated while courting her (now) husband from kissing after he consumed beer and pizza. Now, he rinses his mouth and brushes his teeth before touching her. Contrastingly, for fear of contamination, John says he “won’t snuggle with his wife until after she has brushed her teeth and gargled.” Their intimate encounters have diminished since he was diagnosed because his wife regularly consumes gluten. Eleanor (#20) reports that her husband of 34 years expresses his love and respect by not kissing after he’s had a beer or a sandwich. She said, My husband has seen me in agony, on the floor. He had known me most of my adult life and has seen me sick and not knowing what is wrong with me. He saw me once being taken to the hospital in an ambulance and he followed the ambulance to be with me in the hospital. So, he is glad that I finally know what is wrong. He is not completely gluten free himself for breakfast and lunch, but dinner, which we eat together, he eats gluten free. He will not kiss me if he has had something that is not gluten free. Like if he has had a beer or if he’s had a bite of a sandwich or a cracker that is not gluten free, he’ll tell me, ‘Don’t kiss me.’ Allison (#35) lives with her husband who continues to consume gluten in the household. When he does, and tries to cuddle with her, she says, “We’re not doing that.” Her husband essentially chooses eating gluten over intimacy. She jokes that it’s his way of saying, “Honey I have a headache.” Gluten anxiety can be the final straw in ending relationships. Waffles End a Marriage The stakes are higher than some partners realize because a lack of cooperation and compassion around celiac disease dietary needs can end relationships. When someone feels they have been treated unjustly, in time, they may see this negativity as the final straw. For example, Mila (#10) describes how she attained closure in a dysfunctional relationship with this episode that ultimately broke up her marriage: Probably the most hurtful thing for me was for years of our marriage, every Saturday morning my husband made waffles. That was the one meal of the week that he made. And then when I needed gluten-free waffles he said, ‘I would never make those.’ In all those years, I thought he was making them for me, and he was really making them for his own idea of what a good waffle was. Mila’s spouse communicated his beliefs about breakfast waffles and altering ingredients to make them gluten free did not meet his expectations. When she told me the story, the pain in her voice reflected her heartbreak at his hurtful comment. “I would never make those,” still resonates with her, years after their divorce. Here, the absence of agency doctrine is in play. She thought she had more agency in her marriage and the waffle incident made her realize she didn’t. Also, the able-body bias idea is at work in this scenario. Mila’s husband couldn’t be bothered with her special needs feeling that the only kind of waffles worth eating were those that contained gluten. She describes this incident as the straw that broke the camel’s back—the moment she realized her gluten free needs were not a priority for her (now) ex-husband. Gluten Free Diet Breaks Up “Besties” Dietary requirements broke up Scarlet’s (#14) 30-year friendship. After enduring many medical tests and years of suffering, she triumphantly shared her celiac disease diagnosis and gluten free solution with her friend. Scarlet was happy and hopeful, but her best friend did not reciprocate; rather, she quipped dismissively, “Oh, well. See if it works.” Scarlet describes how her friend made it sound like she was just trying another fad, ignoring the struggles Scarlet had communicated over the years as she tried to find the key to regaining her health. The friend’s lack of compassion caused Scarlet to discontinue the relationship. Scarlet feels her longtime friend did not try to understand the implications of celiac disease, treating her resolve to follow a gluten free lifestyle as a casual fad. Jean’s Story - La Guerre on Pain du Chocolate My friend invited me over for tea on her upper deck garden with a view of Long’s Peak. As we settled in the cushioned rockers, enjoying the ultra blue sky and warm sun, she said, “I went to a French boulangerie and got us pain du chocolate. I know you can’t eat gluten, so I got you these gluten digestive tablets to take before you eat. These pills are supposed to “digest” the gluten so it doesn’t negatively affect you. Isn’t that great?” I know my friend, who I only see every six months because of her incredible life demands, has really gone to a lot of trouble to accommodate me. And how kind that she did that! She has heard me reminisce about eating pain du chocolate while on a trip to Paris, long before being diagnosed. (How I cherish those memories!) And she was trying to recapture that with her beautiful tea array, doilies and all. For a second, I actually considered eating the tablets and then enjoying the pain du chocolate, but I don’t think those tablets work for someone with celiac disease. They may help break down grains for someone with mild gluten intolerance, but for me, they aren’t a solution. (It is also ironic that the word for bread is pain in French, and it causes me pain in English!) I was in a quandary about what to do. I really didn’t want to insult her, but I also didn’t want to poison myself. I decided to explain. I thanked her profusely for going to so much trouble, and offered to reimburse her. (She didn’t let me, so I sent her a gift card for a pedicure at her favorite place in my thank you note.) I think she understood. I watched her eat a pain du chocolate and felt very awkward and deprived. I tried to steer the conversation away from the beautiful foods she arranged, enjoying her companionship and the lovely setting instead. This is an example of the friend’s “vexing venue” where we have to have pre-thought-out strategies for how to deal with situations gracefully without offending anyone, or worse, losing a long-time friend. I feel honesty is the best policy, and as we’ve learned in this document, it hasn’t always turned out to be “best.” But we have to be true to ourselves. Holidays and Restaurant Dining We’ve examined family, home life and even bedroom issues imposed by celiac disease. Next, we’ll expand to the extended family holiday table and restaurant venues. Food is powerfully symbolic at celebrations and holidays (de Certeau, et al., 1998). Familiar food rituals are disrupted when a family member learns they have food sensitivities, especially if the food sensitive person suffers dire physical consequences. The health of the food sensitive person is usually a concern for the entire family and requires both redefinition of family practices and development of new stories to adjust to the changes imposed by a diagnosis. Families exert significant effort to create occasions of enjoying food and conversation together—key features of familial socialization (Ochs & Shohet, 2006). Successful meal planning considers the flavor pairings, food temperature, seating, table scape, and a host of other details. Families take a great interest in the foods they share during mealtime, especially during holidays with lots of guests. Attempting to make traditional foods with alternative ingredients often requires skills that the average home cook does not possess. To put it lightly, “cooking is fraught,” with many things to consider to accomplish a successful meal, especially when trying to accommodate someone with celiac disease (Bowen, Elliott, & Brenton, 2014, p. 21). Hazel (#22) shares a story about how her mother cannot understand why traditional holiday foods are no longer permissible with the gluten free diet. She tearfully describes how the family has certain breads and gluten-containing dishes and how her mother insists they are part of the holiday dinner, even after Hazel told her mother she has celiac disease. She reports: We do family reunions, and I have always been in charge of the food. And getting [mom] to understand that there were things that I couldn’t do anymore, like family favorite dishes, that I couldn’t participate in or even make. It was really hard. She thought that I was mad that I wasn’t in charge of the food. But it wasn’t that. It was just that I couldn’t eat it. That’s probably one of the hardest things. Many deeply held principles are activated in Hazel’s heartbreaking story. The bread is sacred creed is embraced by her mother who wouldn’t alter the traditional holiday foods. Hazel, a mother of two says that both she and her daughter have celiac disease. She also thinks her father does too because he is often very sick after eating wheat and gluten-containing foods. His wife’s gluten-doubt suggests that his malady was in his head. Gradually, though, the mother/wife realized her I-know-best attitude and that gluten was making all of them sick. The mother finally understood and now feels bad for being so harsh and insensitive to her family. Part of the reason Hazel had such a hard time getting her mother to understand her needs is because up until this book, we haven’t had language to discuss when we collide with long-held cultural food practices. Extended family holiday meals pose a serious social dilemma for those with restrictive diets. Social norms dictate that food is shared around the table, but the food is often contaminated with gluten, making the extended family dinner table a “vexing venue.” “Eating together does not necessarily mean all is love and harmony. If the table is the metaphor for life, it represents in a direct and exacting way both membership in a group and the relationships defined within that group” (Montanari, 2006, p. 3). The awkwardness of non-compliance to social norms, regular confrontations with deeply held beliefs, coupled with familial expectations is spotlighted by Emery’s reaction, after she was mocked for her illness: I think that people should realize that it is an incurable autoimmune disease disorder. You don’t make fun of somebody who has cerebral palsy, or something like cystic fibrosis, and say: ‘Oh, that cystic fibrosis person causes so much trouble.’ We just never say that. But the celiac people, they’re totally free to be mocked. Emery highlights a common double standard visible throughout this book that is applied to celiac disease but not other illnesses. Another respondent, Grace, describes her alienation during a holiday ritual. Her husband’s large Italian family has a gift exchange every year, where names are drawn prior to Christmas. She explained how family members could make requests for what they would like, and she always specified, “no food items.” One year, an older aunt drew her name: So, I obviously [requested] gift cards because the easiest thing to get me is a gift card, and she got me an [gluten containing] Italian pastry! That was my gift. Of all people! And, I had to act graciously. And, this is what pissed me off most…my husband did not have my back...I would’ve loved for him to say something. I sat there and had to be thankful about it. Grace was a victim of exclusionary etiquette rules when she had to show thanks for a gift that would make her very sick. She also mentioned that she felt alienated that she could not participate in the customary ritual of breaking the bread and sharing it with the other family members on Christmas morning. Alternatively, if Grace were able to consume the food item given by the aunt, she may have responded with gratitude and feelings of belonging by consuming their Italian traditional foods. Food, in this case, became a symbol of alienation from the family. Liza (#68), however, had a different response when she received a holiday gift she could not consume: My neighbor, who I felt like I had good rapport with, spent Christmas in Europe and brought me a souvenir from her trip to thank me for keeping an eye on her home. She went on and on about how she had this particular spread on her toast for breakfast every morning while there, and how she would sorely miss it because it was not available to purchase in the U.S. She was giving me one of the few jars remaining from her hoard. A true gift, I thought, because it was something she held dear. She asked me if I could eat it, and as I read the ingredients I saw that it contained both gluten and dairy, and that I would not be eating it. So rather than doing the polite thing and acting like it was ‘just the thing I was hoping for,’ considering how much she said she liked this rare delicacy, I decided to be honest. I said, ‘Paula, I am allergic to two of these ingredients and won’t be able to eat it. I feel terrible taking it from you since it is so rare, and knowing I can’t eat it. I would like it if you would take it and enjoy it.’” This story defies exclusionary etiquette rules because Liza didn’t accept the gift graciously. Even though Liza thought she had good rapport with her neighbor and elected honesty, the expected response was that she would “embrace” the jar and tell her neighbor how much she appreciated it. Rather than being disingenuous, Liza elected to be honest. I asked her how her relationship with the neighbor was afterward, and she said it was never the same. She described watching her neighbor return home, walking on the sidewalk, shoulders lowered while holding the rejected gift, and deeply regretted being honest. Liza said from now on, she would “embrace” gifts from people no matter whether she could consume them or not. I’ve thought a lot about this scenario. Recently, I gave a friend a book and a bag of goodies to eat. I don’t know whether she had already read the book, or if she could eat the treats, but the note she wrote me made me feel like that book was “just the exact right thing” and that she would soon be devouring the treats. It made me feel like I hit a home run. There’s a lesson to be learned here! Aren’t You Being Dramatic? The extended family dinner table is where diseases of heredity are discussed. Even though celiac disease is genetic, many participants report they were the only person in the family with the disease. This could be because celiac disease is under-diagnosed in America (Fasano et al, 2003; Green & Jabri, 2003); or, it could be because of social resistance. One in ten family members share celiac disease (celiac.org, 2022). Family members observe the strife experienced of the diagnosed and don’t want to live through that too. Liza (#68) reports how when she told her sister she had been diagnosed with celiac disease, her sister said, “That’s your disease, not mine” and refused to get tested. Those with celiac disease eventually see gluten-containing foods as poison and wish that their family members would not consume it. For example, when watching other family members eating gluten, Lucy (#26) says, “I feel sad when I see them eating it,” knowing what it does to her and fearing what it may do to them. Emery provides an experience of feeling like the only family member who admits to having celiac disease, in spite of others in the family presenting celiac disease symptoms. Emery says, “One has gout and others have all sorts of autoimmune inflammatory issues, and I’m like, well, I know why.” After being diagnosed, discovering that it is a hereditary disease, and observing symptoms in her uncle and nephews at an extended family meal, Emery suggested to her uncle that his family should be tested. He responded saying, “What? Are you sure you aren’t just being dramatic? Are you maybe doing it for attention?” These hurtful slurs caused Emery to defend her disease in ways that other diseases would not have to be defended. Furthermore, it isn’t her disease in isolation. Somebody in the genetic-line passed it along to her. Similarly, Cara (#53) reported a comment from a family member, saying, “You really don’t have to be that gluten free!” Another ignorant message delivered at an extended family meal came from Bert (#63), whose sister said, “I’m sure it’s not that bad” when he described what happened to his body after a minute amount of gluten. These comments exemplify the gluten-doubt belief and yours, not mine attitude. Skylar (#64) says she attends dinners at other people’s homes, puts food on her plate so it looks like she is eating, but doesn’t eat anything. This illustrates another adaptive strategy that conforms to exclusionary etiquette rules where one must appear to be eating and enjoying the foods the hostess offers even though it is “dishonest.” It’s a dining dilemma. Cooks and gift-givers share their food as a way of showing their love. Rejecting it feels like a rejection of the giver, while acceptance by those with food sensitivities feels disingenuous. Is it better to pretend, or to be honest? If we aren’t honest with people we regularly see, we’re perpetuating the “lie” that will likely backfire sooner or later. If we are honest, we risk hurting their feelings and likely won’t be invited back for a meal. I want to believe we can be open and honest with each other about our needs with close friends and relatives, but social norms and rules of etiquette sometimes mandate other tactics. Are You On Some Kind of Freakish Diet? Accepted cultural practices in the restaurant scenario cause awkwardness for those with food sensitivities or celiac disease. Restaurant etiquette includes expectations of eating the chef’s special, not asking for changes, and praising the chef. When sitting at the restaurant table, one is expected to order, but not to be obtrusive about it. Other rules include, don’t be demanding, don’t embarrass others around the table, don’t annoy the server, be open to eating in places where others want to eat, share food, and talk about the flavor combinations. To stay safe, those with celiac disease often break every one of these rules. Interviews reveal dissatisfaction and lack of family compassion stemming from eating outside of the home. Rather than dealing with awkward social situations, many with celiac disease felt homebound in order to remain safe from cross-contamination and reported feelings of grief around lost social interactions. Many expressed a reduction in quality of life. In addition to ensuring safety, eating at home reduces the need for disclosure and negotiating menus with others. However, many celiac disease sufferers still endeavor to eat in restaurants. In this section, we see how participants navigate the restaurant venue, starting with a menu that has no gluten free selections. Quinn (#41) reports: Early on in diagnosis, I visited my older son. He wanted to try a restaurant, and I wanted to go to a gluten-free restaurant. He insisted on the restaurant he wanted saying, ‘I’m sure they’ll have something.’ The waiter said, ‘There isn’t anything in the whole restaurant that is gluten free.’ I couldn’t order anything. I cried and felt isolated and victimized but more than that, there wasn’t anything I could eat. Prior to going to the restaurant, Quinn asked her son to help her review the menu online, or to call first to see if there were accommodations made by the chef. He refused, and she went along, going hungry and remembering her son’s thoughtless comment, “I’m sure they’ll have something” indicating his I-know-best attitude. Quinn’s inability to stand up to her son’s lack of compassion to ensure her dietary needs are met, illustrate her absence of agency in the relationship. And his brush off comment saying, “I’m sure the restaurant will have something” illustrates the gluten-doubt belief. In her story, Hazel describes a humiliating exchange involving a server and her whole family: The waitress said, ‘So, are you on some kind of freakish diet?’ And my daughter said, ‘I am on a restrictive diet.’ The waitress said, ‘Well, it’s not like you need to lose weight.’ My daughter is very, very thin. My daughter said, ‘I’m not trying to lose weight, it just hurts me.’ And the gal just kept arguing, and arguing, and my son-in-law at that point said, ‘Hey, look, here’s what happens if she eats that: she might sit here and poop her pants. So, go fix her a salad.’ My husband was just in shock. I just started laughing. My husband said, ‘I’m so sick of this.’ This episode illustrates the array of reactions to a typical restaurant scenario, as several cultural practices play out. The server would not relent, pushing back and judging the daughter’s request, indicating the able bodied bias. The server’s attitude implied that the only reason someone couldn’t eat food was because they were “freakish,” discounting medical needs for dietary restrictions. The son-in-law graphically detailed her personal symptoms to the ignorant server, which caused the mother to laugh but violated etiquette rules. We don’t talk about such things at the dinner table, after all. The family showed compassion and understanding, trying to defend the daughter’s situation. Finally, the father expressed exasperation at this scenario, likely making the daughter feel the cause of all the unnecessary strife. Other respondents echoed this struggle. In some cases, family members express chagrin when the person with celiac disease orders in a restaurant. Ivy (#40) describes a time when she was out to eat with her daughter and son-in-law, who think she is “high maintenance.” While ordering, the son-in-law interfered saying, “You are going to make the waitress mad.” Her daughter replied calling people with celiac disease, “Glutards.” These painful utterances continued to resonate with Ivy. Anna (#27) described going to a restaurant and ordering a salad, considering it the safest thing on the menu, specifying gluten free. The salad arrived with a dinner roll on top. In a display of solidarity, her husband sent it back, but the server refused, defiantly pulling the roll from the salad and placing it back in front of Anna. The server was enacting the I-know-best attitude, and gluten-doubt belief. These scenes illustrate the process of how family members come to terms to protect each other (or not) with food and gluten-related ideologies that affect behavior. Some family members and friends avoid eating out with those who have food sensitivities or celiac disease, such as when Naomi (#32) reports her sibling saying, “You’re such a pain. You always have to have your own stuff, and won’t share food.” Of course, some respondents report positive experiences in restaurants. The degree to which the listener relates to a story is known as being empathetic, or how much sympathy and compassion the two engaging in conversation share. The more empathetic people feel toward each other, the more they connect to each other. This is usually because both share similar life experiences. For example, if the server also has celiac disease, he or she would likely take care to provide a safe meal to another with celiac disease. In a highly empathetic situation, the restaurant patron is likely to persuade the waiter to conscientiously provide a safe meal. The following interview from Allison indicates an empathetic situation: I can honestly say that there was one person, and it was at a restaurant, shockingly, it was a manager who said, ‘There are people who come in here who have gluten sensitivity, but with you having an actual gluten disease, it is much more serious.’ He said, ‘here are the items that you can have, and I will make sure that they are prepared in an area where there won’t be any cross-contamination.’ He told me where the food was prepared, and he was willing to take me through the kitchen. He went above and beyond what he should have done, and I was so grateful for that. Not many restaurants are like that though. Another respondent, Madelyn (#57), was in Las Vegas and asked the waiter for a gluten free meal. The waiter was very conscientious, and said not to eat from the buffet table because of potential cross-contamination. He “took care of her” with food she ordered separately. On the contrary, Riley (#65) describes a time she went to a restaurant she regularly frequented, ordering the same menu item as usual with different results: I ordered a gluten-free blackened chicken Caesar salad and I have ordered this before, and I started eating my salad and the jerk in the kitchen put the croutons underneath my salad where they were hidden. And I didn't know that until it started eating. I was so mad. And I have had that salad before, and I've never even seen croutons on it underneath anything. So you know it was intentional. And I told the manager, and she didn't really take it seriously. It was like, ‘oh well okay… Let me get you another one.’ Since 2012, those with celiac disease have been deemed “disabled” under the American Disabilities Act. This implies that the dietary needs of those with the disease are required to be accommodated. However, there is an exception for restaurants that says if their signature recipes are fundamentally altered when converting them to be gluten free, they do not have to comply. Until the American Disabilities Act (ADA) is amended to require eating establishments to have at least one “safe” selection on the menu for those with celiac disease, restaurants will continue to be a “vexing venue.” The American Disabilities Act and how those with celiac disease might use it to their advantage will be discussed at length later in the book. Moving Toward Accepting New “Truths” and Living Gracefully This chapter shows how long-held “truths” and generally acceptable cultural practices do not serve those living with celiac disease. The family meal is a complex event fraught with social norms and rules of etiquette. Day-to-day household harmony requires cultivating an understanding with our loved ones, often challenging their long-held truths. Many of the situations discussed in this chapter were uncomfortable, because no strategies had been pre-determined to make it easier. Just like the survival books tell us, we need to have pre-thought-out strategies in order to survive. We need to know how many doors are between our room and the fire escape before going to bed in a hotel. We need to count seats fore and aft in an airplane to know how many there are to an exit before take off. We must know what items to take with us if our home must be evacuated. Similarly, strategies for navigating social situations while living with celiac disease are imperative. These strategies ultimately redefine the ill person’s identity, and change dining dilemmas into pleasant situations. Learning to live with a disease is a process, which is the topic of the next chapters. Podcast Interviews Forum Questions: Describe a conversation you’ve had with a family member that illustrates the yours not mine principle. How have rules of etiquette impeded your safety at an extended family meal? This chapter illustrates examples of telling the truth when receiving a gluten-containing gift, and other examples of accepting a gift as if it’s “just the thing” even though it contains gluten and cannot be consumed. How would you handle it if a good friend or family member gave you gluten-containing food? What strategies do you use when you go out to eat to ensure you have a safe meal? Ideologies in Chapter 5 Ideology Description Chapter Yours, not Mine When family members deny they may have similar genetics as you. 5 References in Chapter 5 Arroyo, A., & Segrin, C. (2013). Family interactions and disordered eating attitudes: The mediating roles of social competence and psychological distress. Communication Monographs, 80(4) 399–424. doi: 10.1080/03637751.2013.828158 Beasley, S. (2011). Minefield loving. Psychology Today, 44(4), 36-37. Bentley, A. (2005). Men on Atkins: Dieting, Meat and masculinity. In L. Heldke, K. Mommer, C. Pineo, and W. Irwin (Eds.), The Atkins diet and philosophy: Chewing the fat with Kant and Nietzsche (pp. 185-195). Chicago, IL: Open Court. Bowen, S., Elliott, S., & Brenton, J. (2014). The joy of cooking. Contexts, 13(3), 20-25. doi: 10.1177/1536504214545755 Brown, L. J. (2011). The role of couple communication in managing type 2 diabetes. In M. Miller-Day (Ed.), Family communication, connections and health transitions (pp. 101-134). New York, NY: Peter Lang Publishing, Inc. Crowley, E. T., Williams, L. T., & Brown, L. J. (2012). How do mothers juggle the special dietary needs of one child while feeding the family? A qualitative exploration. Nutrition & Dietetics, 69(4), 272–277. doi:10.1111/j.1747-0080.2012.01604.x Cummings, A. J., Cummings, A. J., Knibb, R. C., King, R. M., & Lucas, J. S. (2008). The psychosocial impact of food allergy and food hypersensitivity in children, adolescents and their families: A review. Allergy (Copenhagen), 65(8), 933-945. doi:10.1111/j.1399- 3038.2009.00975.x Curtin, D. W., & Heldke, L. M. (1992). Cooking, eating, thinking: transformative philosophies of food. Bloomington, IN: Indiana University Press. de Certeau, M., Giard, L., & Mayol, P. (1998). The practice of everyday life, Vol. 2. Minneapolis, MN: University of Minnesota Press. DeVault, M. L. (1991). Feeding the family: The social organization of caring as gendered work. Chicago, IL: University of Chicago Press. Fasano, A., Berti, I., Gerarduzzi, T., Not, T., Colletti, R., Drago, S., Elitsur, Y., Green, P., Guandalini. S., Hill, I., Pietzak, M., Ventura, A., Thorpe, M., Kryszak, D., Fornaroli, F., Wasserman, S., Murray, J., & Horvath, M. (2003). Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Arch Intern Med, 163, 286-292. doi: 10.1001/archinte.163.3.286 Frank, A. W. (1995/2013). Wounded storyteller. Chicago, IL: University of Chicago Press. Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Groh, D., Jason, L., Davis, M., Olson, B., & Ferrari, J. (2007). Friends, family, and alcohol abuse: An examination of general and alcohol-specific social support. The American Journal on Addictions, 16(49), 49-55. doi: 10.1080/10550490601080084 Hallert, C., Granno, C., Hulten, S., Midhagen, G., Strom, M., Svensson, H., & Valimarsson T. (2002). Living with coeliac disease: Controlled study of the burden of illness. Scandinavian Journal of Gastroenterology, 37(1), 39–42. doi: 10.1080/003655202753387338 Jackson, P., Glasgow, J., & Thom R. (1985). Parents’ understanding of coeliac disease and diet. Archives of Disease in Childhood, 672-674. Koenig Kellas, J., & Trees, A. R. (2006). Finding meaning in difficult family experiences: Sense-making and interaction processes during joint family storytelling. Journal of Family Communication 6(1), 49-76. doi: 10.1207/s15327698jfc0601_4 Mandell, D., Curtis, R., Gold, M., & Hardie, S. (2005). Anaphylaxis: How do you live with it? Health & Social Work, 30(4), 325–335. doi:10.1093/hsw/30.4.325 Masia, C., Mullen, K., & Scotti, J. (1998). Peanut allergy in children: psychological issues and clinical considerations. Education and Treatment of Children, 21(4), 514-531. No doi. Montanari, M. (2006). Food is culture. New York, NY: Columbia University Press. Nettleton, S., Woods, B., Burrows, R., & Kerr, A. (2010). Experiencing food allergy and food intolerance: An analysis of lay accounts. Sociology, 44(2), 289-305. doi: 10.1177/0038038509357208 Ochs, E., & Shohet, M. (2006). The cultural structuring of mealtime socialization. New Directions for Child and Adolescent Development, 111, 35-49. doi: 10.1002/cad.153 Vangelisti, A. L., Maguire, K. C., Alexander, A. L., & Clark, G. (2007). Hurtful family environments: Links with individual, relationship, and perceptual variables. Communication Monographs, 74(3), 357-385. doi: 10.1080/03637750701543477 Wangen, S. (2009). Healthier without wheat. Seattle, WA: Innate Health Publishing. Continue to: Gluten-Centric Culture: Chapter 6 - From Shaky Ground to the Big Shift Back to: Gluten-Centric Culture: The Commensality Conundrum - Chapter 4 - The Body Battleground © 2021 Alternative Cook, LLC

Celiac.com 07/01/2022 - If you’ve been reading from the start (Chapter 1), you understand the social influences that work against your quest to diligently follow the gluten free diet. You’ve developed strategies for how to deal with each of the “vexing venues” (places we run into trouble) discussed in Chapter 2. In Chapter 3, you’ve uncovered how long-held “truths” don’t serve you, and you have implemented new “truths” imposed by your food intolerances. If you are a woman, in Chapter 4, you discovered how you might experience more pressure than your male counterparts when navigating aspects of society. In Chapter 5, you learned how the gluten free lifestyle plays out on the home front. Throughout, you’ve heard first-hand from participants from Dr. Duane’s nation-wide study, which have perhaps validated your personal experiences. In this next iteration of Gluten Centric Culture, we discuss what happens when you think you’ve got it all worked out and something goes wrong. In future chapters, we’ll discuss how things can go right more often because of your approach, even to the point where your life is rewarding and inspiring again. Jean’s Back on Shaky Ground Seven years into my gluten-free life, I broke out in another full-body rash. I couldn’t imagine what caused it. I thought my kitchen was completely gluten free, but something caused this. I asked my husband, “Did you by chance accidentally bring a doggie bag home from a restaurant that might have contained gluten?” “Nope,” he said. I wondered, “Did I buy something from the bulk bin at the grocery store?” Since the rash takes ten days to show up after ingestion, I looked at my calendar from ten days ago. That day, I went to a restaurant my friend wanted to go to that is famous for sliders. She ordered sliders, and I had a lettuce and tomato salad. On a cold dreary day ten days later, I walked several miles from campus to that restaurant just to ask if there was any chance that the salad I ate was cross-contaminated. They claimed it was impossible. I felt betrayed and angry. I am always so careful. The rash is so itchy -- I bought several bottles of clear calamine lotion and rubbed it all over my body. It gave me about ten minutes of relief before the itching raged again. I took histamine blocks in the day, and antihistamines in the night. Over the next week, the misery got worse before it got better as the rash bloomed over my body. It took ten days for the itching to subside and six weeks for it to go away completely. Meanwhile, I still didn’t know what caused the reaction. The GlutenEZE strips are little chemistry packets (complete with a test tube) you perform at home to see what contains gluten. I used them to assess everything that might have been contaminated. After I examined all that I could think of in my kitchen, I contemplated what might be in my bathroom. I looked at the ingredients on my hairspray (some hairsprays contain wheat protein). I inspected the soaps I used to see if the ingredients changed in the new batch I bought. I read the labels on all the creams, lotions, foundations, blushers, lipstick, eyeliner, eye shadow, brow pencil, face-masks, skin hydrators… Nothing contained gluten. I was baffled. What could have caused this? By day seven of the rash breakout, I had tested 43 things in my house (spending $473 on test strips and still no answer). Then I remembered that about ten days before getting the rash, I came home from school feeling ill. My head hurt, which is rare, my chest was tight, and I just wanted to lie down. I remembered taking an aspirin that day before I took a nap. The aspirin had been in my medicine cabinet for several years. I read the ingredients on the aspirin and one of the ingredients said “starch.” When I shook the GlutenEZE test tube, the contents exploded all over my bathroom. That had never happened before! I looked at the results and it showed the aspirin tested positively for gluten. Eureka! I finally found the cause. One little aspirin tablet caused all that misery. Wait a minute. One little aspirin caused that? How much gluten can be in one little aspirin tablet? The reaction itself, and then the realization of how sensitive my body is, amazed me. I felt like I did when I was first diagnosed – questioning everything. During that frantic week of testing before I discovered it was one aspirin, I was afraid to eat in my kitchen, let alone anywhere else. I lost weight, and I existed in an uneasy condition of uncertainty and doubt. Even though I had lived several years harmoniously with my body, that incident made me feel like I was starting over. Taking an aspirin was a natural thing to do. It never occurred to me to read the label. But realizing what havoc it caused, becoming a preoccupation for weeks, I felt vulnerable and scared because everything in my house wasn’t “safe” after all. Also, I thought I’d be more resilient to a tiny infraction of gluten in my body. After being gluten free all those years before, my body was as clean as a newborn baby. (That may actually be why I reacted so violently.) Wow! Up until that incident, I thought I had a little more “tolerance.” It made me question the “truths” I held as a person with celiac disease. I was thrown into a state of “food” limbo – rethinking what was OK for me to consume and what wasn’t. The Disease Process When we are diagnosed with a disease, we undergo a mental shift to accept what our body could do before and what it can do now (Rohrbaugh, Mehl, Shoham, Reilly, & Ewy, 2008). We have to learn how the disease inhibits us, and how to work around it. The first step is to figure out how to avoid experiencing undesirable physical symptoms of the disease. This includes relearning everything we can and cannot eat in a bite-by-bite process. Once we have a handle on that, then we think about how to enter back into our social realms with our new set of circumstances. We don’t want our disease to be the main topic of the conversation, of course, but we do need to learn how and what we can do to be included without causing ourselves to regress into the symptomatic phase. Previously taken-for-granted beliefs are shattered as new information is accumulated. What we thought was true before being diagnosed evolves, and even after living with the disease, we are forced to refine our “new truths.” As we navigate the gluten free lifestyle, we defy I-know-best attitudes from authorities, diet discretion practices from friends and family, able-body biases and exclusionary etiquette rules everywhere we turn (see Chapter 2). A dietary edict such as, all in moderation may be a “truth” for most people, even in the medical field (Shanahan, 2017); but for a person with food sensitivities or celiac disease, moderate amounts of an allergen or gluten could make him or her very ill—even triggering a cascade of reactions leading to death. Therefore, truth for those with food sensitivities is drastically different than truth for the able-bodied general population. New truths evolve as information is reinforced with experience. This is the point where we test our limits. For example, a newly diagnosed person may not believe she is that sensitive, clinging to the notion, a little won’t hurt you. When faced with a tempting baked treat, she may think about her asymptomatic friend with celiac disease who takes more chances. She decides to test her own limits and indulges in just one bite; if symptomatic, she may be surprised to experience an array of symptoms that force her to rethink that “truth.” These revised (post-diagnosis) food-truths are formed and reformed through experiences over time. As discussed in Chapter 2, people with food sensitivities or celiac disease may lose credibility with family members, as they struggle to understand the cause of their symptoms, and experiment with different diets to attain health. Family truths morph over time. We are born into an existing conversation, and eventually learn to take part in it (Koenig Kellas, Kranstuber Horstman, 2015; Koenig Kellas & Trees, 2006). By visiting the stories over and over again, it makes us what we become (Somers, 1994). Our ability to unravel our new truths depends on personal experience, contemporary knowledge, and influential ideologies. When we share what we know with cohorts, we can arrive at an agreed-upon truth that works for the present moment -- until the veneer wanes -- and then we have to reassess what is true for ourselves. In a dynamic, complicated process, we engage in power struggles, as we evolve new “truths” when living with disease. To complicate matters, the idiosyncrasies of food-related illness are seldom understood by those who do not live with them (Metchikoff, 2014). It is also in the disease process where we determine new trust parameters such as who we rely on to cook for us and whom we don’t; and personal level disclosure policies (discussed later in this chapter) such as how much we’ll tell publicly about our dietary needs. This ever-changing shaky ground is the start of the liminal, or “limbo” stage (Andrews & Roberts, 2015; Hout, 2017). As we move through understanding how to live with our disease, we go in and out of limbo. We fall back into the limbo stage when a social strategy we’ve used in the past fails us in a new circumstance, or when we are contaminated by a food we thought was safe. We have to rethink our resolves. That is the topic of this chapter. Shaky Ground The aspirin incident put me on shaky ground. I went from being confident about controlling my disease back to the limbo stage until I could figure out what caused the reaction. It is so easy to get complacent after a few healthy years with no reactions. My newly formed “truths” after being diagnosed were found to be untrue as I realized the seriousness of having celiac disease. The limbo (or liminal) stage is the in-between status (Nicholson, Babin, & Briggs, 2017), a restless and unsettling state, where old and new “truths” are challenged. Nothing seems consistent, and everything has to be re-thought through. The “Limbo” Stage There are two branches in the limbo stage: food limbo and social limbo. Food limbo is when something you thought you could consume turns out to poison you such as when a cherished packaged food changes ingredients, or a pharmaceutical changes binders. That’s a betrayal that requires work to isolate what exactly caused the physical reaction. Then there’s social limbo, discussed below, when pre-determined social resolves backfire and you have to come up with a new strategy. Being in the limbo stage sucks. It’s when you know you have a major problem and you don’t know what to do. It happens when first diagnosed, and it might be triggered by an incident that happens years later. It puts you in at funk of self-doubt, questioning everything to figure out how to best navigate living with the disease. Brenelle (#56) reports: “When I was first diagnosed, I spent a month crying… How could this happen? Where did this come from?” This sentiment describes how many people feel when initially diagnosed (though some study participants expressed relief to finally know the cause of their maladies). Individuals adjust their self-narratives that contribute to redefining and transforming identity after a life-altering diagnosis. Though some people with food sensitivities pass through the limbo stage, some stay in it indefinitely such as in the circumstance of uncooperative family members, an inability to be assertive, or low self-esteem on the part of the person with celiac disease (Peniamina, Bremer, Conner, & Mirosa, 2014; Simpson, Oster, & Muir-Cohrane, 2018). Others more commonly go in and out of limbo as resolves work for a time, and then surprises happen, putting them back in the liminal state. Remember Gianna (#50) from Chapter 5, who described how her husband “just doesn’t get it”? Her kitchen is a “vexing venue.” Every day she wonders if what she eats will make her sick because foods that should be safe have been cross-contaminated by her husband’s careless habits such as slathering his bread with jelly and then re-inserting the knife into the jar. This ensures she exists in a constant state of limbo. That’s no way to live, especially in your own home. Not only is she worried about every bite of food she consumes, she also must wonder: If she can’t trust her husband to protect her with something as fundamental as food in the kitchen, how could she ever trust him to protect her from other threats in life? This kind of anxiety permeates all levels of a relationship. She must question what else he is doing that could harm her. How someone treats the special needs of another, especially when it imposes an inconvenience, is a harbinger of how they treat someone on all other levels. (Remember how waffles ended a marriage in Chapter 5?) Thinking Differently Now that we’ve covered “truth” and how it evolves, let’s move to discussing the idea of paradigms. This is important because it explains why it is so hard to change people’s opinions. Paradigms differ from ideologies in that ideologies are doctrines of beliefs held by specific groups of people, such as religious beliefs, governmental practices, or generally accepted rules of etiquette. Paradigms are a shorthand model or pattern for a generally acceptable way of thinking. It’s something we “know” so we don’t have to give it a lot of thought (Haverkamp & Young, 2007). For example, to most, a birthday cake signifies warmth, happiness, and a symbol of love. Consider a newly diagnosed diabetic attempting to control glucose levels with dietary restrictions. That birthday cake now signifies soaring glucose, sickness, potential coma, blindness, or even death. People who have diabetes have to “think differently” (Frank, 2013, p. 6). Within the new diabetes paradigm, the birthday cake has been altered from something fun to something dangerous. Paradigms are a quick reference template, or a kind of shorthand for comprehension, where an individual avoids the need to relearn the same things by drawing on past experiences (Bruner, 2002). Paradigms make life easy. For example, we know the earth is round. But before, when people thought the earth was flat and then Galileo determined it wasn’t – look at what happened to him! People don’t respond well when their paradigms are challenged. When paradigms change because of illness or dietary restrictions, all of your taken-for-granted knowledge must be reassessed. The change in the diabetic person’s understanding of birthday cake illustrates how a cake must now be viewed with regard to the physical responses it causes (Bruner, 1985). Other family members are forced to contrast their earlier concept of a birthday cake in light of the medical implications of diabetes—thus, they alter their original paradigm. Altering paradigms puts most in a state of limbo until they work out new paradigms. In and Out of Limbo Sometimes the state of limbo subsides as we work out strategies, experience success, alter our truths, and our loved one’s truths. But it’s not always smooth. Even with new resolves, redefined truths and adaptive strategies, life situations can throw us right back into it. The limbo stage is best described as experiencing uncertainty and self-doubt, where resolves are challenged, and new decisions must be made in order to navigate food-related social activities gracefully. The limbo state can be triggered when trust parameters are tested. For example, Robert (#12) from Chapter 2 who had gluten free meals prepared by his spouse grew to trust others in his family to fix a gluten free meal for him. Then, his aunt concealed the store-bought cheesecake, and he was sickened. The sickness caused Robert to enter into the liminal stage because something he thought he had under control didn’t work. People go in and out of limbo because things may go along smoothly for a while, and then something happens to throw you into the “back to the drawing board” phase. For example, Quinn (#41) from Chapter 5 who thought she had an understanding with her son, entered into a social limbo state when he insisted they go to the restaurant that had nothing for her to eat. She realized her son didn’t have her best interests at heart, causing her to feel uncertain about choices he made on her behalf. While visiting friends, Dustin (#46) describes how he entered into a state of food limbo when he realized that all unexamined food was unsafe to consume, even food prepared for him by his wife: If someone had told me before how [difficult it is to adhere to the gluten-free diet], I would have thrown up my hands … I wouldn’t have believed it. My wife and I went to a pool party four hours away with food to last for a couple of days. She made a bunch of food and brought it in a cooler. I ate it and became sicker than a dog the whole time. My sensitivities went nuclear. I was so tired, I couldn’t move. I kept having to visit the bathroom. I had pain and was nauseated. This isn’t working! We had an argument on the way home. ‘What is the issue?’ she asked. She’s mad, I’m mad, and I don’t feel well. I am questioning the ingredients in everything, on the grill, something was in the grilled chicken. Or maybe the garlic powder … this was the day I realized that everything may be cross-contaminated. Dustin’s story illustrates how the event unfolded differently than what he expected, throwing him into food limbo to figure out what exactly caused the reaction; as well as social limbo, because his illness caused him to isolate from the rest of the group, embarrassing him in front of his wife and friends. After having this revelation, he had to redefine every aspect of his “eating” and “social” life, to learn new “truths” and to figure out how to gracefully exist. He had to wonder why the foods prepared by his wife, someone he previously trusted to cook for him, caused him to become so ill. He was in a state of uncertainty and limbo for months after this incident. Jean, Wear a Hazmat Suit! I have been a part of a non-profit women’s organization for over thirty years. Over time, I have explained my health idiosyncrasies to them, and regularly bring my personal bowl of food to potlucks or dinner parties. I rarely eat any food I don’t prepare myself. They have seen me be careful and often comment on what I can or cannot eat. I have felt kindness and compassion from these women, who have been with me since I was first diagnosed. I felt “understood” until a recent incident. The group was going to volunteer for Oktoberfest to serve beer at a booth as a fundraiser. We learned we could raise around $3,000 for our non-profit just by serving beer. That sounded like fun, so I signed up for a shift. We even thought about wearing beer-maid costumes! My husband used to be a bartender a long time ago while attending college and learned about my volunteering several weeks after I committed to doing it. He said, “What are you thinking?” You will definitely get cross-contaminated with beer. You’ll be serving people as fast as you can pour. You’ll get covered in beer! Fizz will get into your eyes, nose, and mouth! You can’t do that!” It never occurred to me that I could be cross-contaminated just serving beer, but as I thought about it, he was right. After reacting to breathing flour-dust just sitting a couple of hours in a pizzeria, I realized I am even more sensitive than I thought. The idea of being exposed to gluten for an entire afternoon worried me. So, I wrote to the group and explained that with celiac disease, it was unsafe and asked if someone could substitute for me. Remember, these are people I have been in a group with for over thirty years. We know each other well and even consider ourselves “sisters.” I care deeply for them, and they for me. The ensuing email “reply to all” chain surprised me. One person said: “Oh, you’ll be OK. Just be careful.” Another said, “Just wear gloves.” One said, “You are being over-dramatic.” Another said, “I agree with you, it will be a beer-bath. Don’t come. It’s not safe for you.” One said, “You should have contacted me directly and not asked the group for a substitute. Now everyone thinks it will be an unpleasant experience and more volunteers may drop out.” Another said, “Jean, maybe you should wear a hazmat suit – now there’s a look.” Rather than treating me as an individual taking my “no” without debate, this group decided it was up for public negotiation. Though their comments were probably well-meaning, I was confronted with a host of negative feelings. As I read the emails, I felt mocked and shocked that those loving “sisters” were debating the level of my tolerance in a public forum. I guess I put myself in the situation by “replying to all.” I was also incensed that they felt they knew the nuances of my disease so well that they could judge what I could or couldn’t tolerate. I felt like even though I had explained my situation to them over the years, nobody cared to understand. The email chain threw me in a state of “social” limbo. In my case, the group stereotyped what they thought I could handle – not asking or listening to me, but rather trying to find ways to include me. In one sense, the email exchange could be viewed as compassionate, because they offered opinions for ways to mitigate the risk for me. In another way, it represented a collective decision-making process where others make incorrect assumptions and act on them. It also illustrates how messages escalate in electronic formats when directed to many people. How could I apply respect and compassion to this situation? I could have replied to all explaining (again) my diet idiosyncrasies, but I really didn’t want to do that. It seemed “too public” and could start another slew of opinions. I could have suggested that I run a hard-cider station for the gluten-intolerant, but since beer companies were sponsoring it, that wouldn’t work. Rather, I decided to command respect. I stated my decision not to go, found a substitute and said no more. “Men don’t tell you they are ill. No man wants to be weak.” William (#60) Levels of Disclosure The limbo stage also entails determining “levels of disclosure” guidelines. In spite of social norms, most people with celiac disease eventually disclose to ensure they receive gluten free meals prepared by someone else (Samuels, 2003). Those diagnosed with a body-compromising disease must calibrate their trust parameters to understand how to perform day-to-day activities while interacting with others. People who have disabilities regulate their lives on a schedule of pre-determined regimens, planning ahead in order to stay well or to deal with illness (Corbin, 2003) without others noticing as we learned from Ava’s (#7) “accidents.” Ava regulated her schedule to accommodate her intestinal undulations, which proved unpredictable. This takes a lot of time and can cause conflict with non-disabled people on the job and in social settings. People with hidden disabilities report that they “develop personal disclosure policies, with a variety of specific predetermined versions of their story” depending on the audience (Valeras, 2007, p. 76). Similarly, the person with celiac disease must decide to whom to “come out” and how much to disclose (Samuels, 2003, p. 237). Disclosure can trigger responses from kindness and compassion, to ridicule and mockery (Samuels, 2003). As Ava experienced, chronic diseases ebb and flow, often surprising sufferers with unexpected symptoms that perplex others and alter daily life (Charmaz, 2006). Vulnerabilities are exacerbated when the food sensitive adult ventures out to a family dinner, restaurant, or a friend’s house and must disclose their dietary restrictions in order to eat a safe meal. Disclosure may cause unwanted attention, scrutiny, and skepticism from others in a social context as described by Claire, (#25) who says, “I’m a little on the shy side, and at the dinner table when we are out to eat with friends, everybody quiets down when I talk to the chef.” Disclosure requires a high level of self-esteem and courage (Peniamina, Bremer, Conner, & Mirosa, 2014). Navigating social situations is problematic particularly when dining out. I-know-best attitude and able-body biases (Chapter 2) prevail in restaurants, where celiac disease sufferers asking for a safe meal are subject to restaurant policies and server judgment. In particular, these edicts alienate and stigmatize celiac disease sufferers who must avoid every molecule of gluten as conveyed by Hazel (#22): I think the hardest part that I have with it is, like ‘dairy free,’ people don’t even question that. But if you say, ‘I’m gluten-free,’ there is a lot of ugly stigma about it. I just wonder why it is so hard for people to accept it? I used to be very offended by all of the videos on the Internet making fun of people who are gluten free. And, now, I’m like, ‘Well, that does apply to some people because there are a lot of people who do it for non-medical reasons. But they’ve kind of ruined it for those of us who don’t have a choice.’ Hazel expresses frustration that when she disclosed her dietary needs, it was questioned, while other food-related issues such as lactose or casein intolerance are taken seriously. She further explained that she feels stigmatized asking for gluten free foods in restaurants and suggests that “fad dieters” have diminished her credibility as a person with celiac disease. Disclosure is done through narrative and often, the story must be told and retold in order to garner understanding and cooperation from friends and family and, as Hazel points out, there are many doubts with gluten intolerance. The person with celiac disease may appear inconsistent and fickle to family members. I recall a situation that happened while I was visiting a friend in a different city. I refused to eat some cookies she bought from a local bakery because they contained gluten. Later that day, she caught me eating a “cookie” I brought from home when she walked by my bedroom. She looked at me eating it as it to say, “I thought so…” but in fact the cookie was gluten and even grain free – a recipe I developed so I could travel with high-fat “cookies” though it wasn’t at all what she thought of as a cookie. We never had a chance to talk about it, but her look said it all. She thought I had contradicted myself by refusing her cookie and eating mine. I’d Rather Die Before Giving Up Bread Part of the limbo stage is testing alternative responses in scenarios to see what works. In my study, I learned that people have deep-seated attitudes about food. They have opinions of what is “right,” and what is “weird” to eat. Some expect traditional dishes on holidays or won’t give up beloved treats even if they experience illness from consuming them. For example, Liza (#68) with heart disease was told by her doctor to stop eating chocolate. Even though the doctor felt that the saturated fat in the chocolate was clogging her heart, causing her to be weak and short of breath, she refused to give up her indulgence. A friend told me her doctor told her to quit eating gluten and that she would rather die before giving up bread. The idea of giving up foods is anathema to some. We have to be sensitive to the fact that we also may have long-held paradigms about food. While in limbo, we come to terms about what we can accept as alternatives to traditional foods. The limbo stage forces us to be flexible with social situations and food choices. Foods once thought of as “good” are now considered “bad.” This can cause conflict and feelings of alienation on both sides. Hosts may be insulted, and the person with celiac disease may be stigmatized by other family members, and perhaps even excluded from future invitations to extended family meals. Narratives and family-meal folklore have suddenly been altered, which causes all involved to readjust their perspectives in order to understand the new physical needs of the family member. Additionally, family members need to be resilient to change. Struggling between the unpleasant choices of not eating, risking cross-contamination, or bringing separate foods, Sarah (#31) describes an extended family that has not adapted to her needs: All my family lives out of state in Texas. We see them over the holidays. For Thanksgiving, I bring my own gluten-free turkey, potatoes, and bread. We’ve tried to educate the extended family members, but I think because we see them so rarely it is easily forgotten. And, I really don’t like making people accommodate for me, especially large groups of people. I would rather just provide my own food rather than make people worry. She describes a situation where she prefers not to impose her needs on her family’s meal, saying that it is too much trouble to educate them. Her adaptive strategy is to arrive a day ahead to shop for “safe” foods for the holiday meal. In this case, Sarah has given up trying to educate her extended family because of personal reluctance and their lack of interest in accommodating her needs. So instead, she brings foods that look similar to the traditional foods her extended family is enjoying. In this way, she “fits in” with their expectations of what one eats on Thanksgiving. Her resolve indicates that she is shifting from limbo to a new state of homeostasis, or the Big Shift where her truths are defined, whether or not her family adopts them. We’ll discuss this new state of homeostasis but first, I want to point out that there are different responses to celiac disease among those who have it, depending on how much they react to consuming gluten. Asymptomatic vs. Symptomatic In my research, I discovered that the more a person reacts to gluten, the more uncomfortable he or she is in social situations. Asymptomatic people describe how they can go to a restaurant with their families and enjoy the “gluten free” selection on the menu without a qualm. Like asymptomatic Samantha (#29) who says, “I trust restaurants to provide me with a gluten free meal. Cross-contamination is not an issue for me.” Less symptomatic respondent, Audry (#61) says, “When I go out to eat, I take digestive proteins. Even though I avoid gluten, I cannot tell if the enzymes work because sometimes I still have problems.” People who do not react to cross-contamination seem to navigate social situations more gracefully than those who severely react. Those who are symptomatic have a sense of unrest about eating anything in a restaurant where gluten is present because the slightest amount can trigger a reaction. The chart below depicts a continuum where one end is asymptomatic and the other end is extremely symptomatic. Everyone with celiac disease falls somewhere on this spectrum. I call this the Eudemonia Continuum. I love that word, eudemonia, because it is the exact-right one to use. Eudemonia means having a sense of well-being, contentment, and calmness about something, and in this case, we’re talking about “life.” This is what we all strive for in life. Those who are asymptomatic enjoy a higher sense of well-being than those who have many symptoms. They freely interact in society, making a few small adjustments. On the other hand, symptomatic people take no risks, often eat a grain free diet, and seldom eat foods they do not prepare themselves. Those in the middle take some chances when in public, even though they maintain a gluten free home. Varying degrees of symptoms is a significant reason there is so much discrepancy in the lifestyles of individuals who live with gluten sensitivities. There isn’t a consistent response. A Sense of Well-Being vs. Sense of Unrest Lucy (#26) who is asymptomatic describes how she frequents restaurants all around the city with her husband and family. She says her life is “normal,” even though she has celiac disease. She said she enjoys gluten free beer, breads, and pastas everywhere she goes. She describes what I imagined for myself when I was first diagnosed. I thought, “Oh, just a few substitutions, and I’ll be fine.” Most respondents reported stories as told by Vivian (#51) who says: “I know a lady in a woman’s group I am in who has celiac disease. She’ll get a cupcake and eat the frosting but not the cupcake.” Vivian is highly reactive, and feels this woman who is not symptomatic undermines her credibility with the rest of the women in the group since she isn’t as careful. Vivian suspects the lady likely has antibodies as a result of her indulgences. People in her group say, “Jan is eating that, why aren’t you?” She replies by saying, “I have a more severe case of celiac disease.” Only a few of the study participants reported being asymptomatic. Most highly symptomatic respondents report shying away from eating out or in friends’ homes and live in a state of unrest, concerned about when they may next accidentally get cross-contaminated. Asymptomatic people seldom experience the BIG Shift (discussed below), but people who are highly symptomatic do, because their established “truths” are completely disrupted and have to be redefined in many contexts. Previously embraced paradigms that worked before have to be challenged in every venue. New strategies have to be established. We do this through narrative with others and self-talk as our illness evolves. THE BIG SHIFT For most, the limbo stage ends when our new resolves allow us to comfortably function in life again. Coined by Cannon (1932), the word “homeostasis” refers to a state of equilibrium experienced by the body when all systems function properly. When this steady-state is disrupted, the body strives to regain it. For example, the body maintains a steady temperature of 98.6 degrees. When this is threatened, the body adjusts to preserve its desired steady state. Cannon cites nutrition, psychological, and physical elements as potential homeostatic disruptors of the nervous, cardiovascular, muscular, skeletal, lymphatic, respiratory, and digestive systems. Similarly, after a person is diagnosed with a disease such as celiac disease, “truths” are altered to the point where participants in the study declared that their “steady state” of existence or homeostasis would forever be changed. Dustin described beginning his BIG Shift when he spent the weekend being sickened after eating the food his wife prepared for him. He had to reassess everything he thought he knew as he realized all old “truths” no longer worked. That was the limbo stage. Dustin’s ultimate BIG Shift is illustrated when he describes how his food-related practices have been completely altered. For example, he says he frequently eats before going to events or brings food he has prepared himself to protect against cross-contamination, to weddings, group dinners, and banquets. He says, “If you don’t make a big deal about it, then it isn’t a big deal.” This moved him out of limbo and into the BIG Shift stage. Individuals diagnosed with a disease undergo a “homeostatic shift” process that disrupts the individual’s old equilibrium to a new (permanent) constant. Since it’s broader than just physical functions, I’m terming it the BIG Shift. For a person with celiac disease, our sense of what used to be “normal” is disrupted with the realization that the disease must be recalled whenever food is consumed. Once new truths are solidified, the BIG Shift is when these practices become the new steady state including what we eat and how we engage in social situations. We protect ourselves, we know what we can and cannot eat, we are careful, and we are armed with a set of redefined truths. We’ve surrendered to our situation in every venue of life. We don’t fight it anymore. We don’t defend it either. We are what we are and we accept it. That’s the BIG Shift. The BIG Shift Process The following figure illustrates the BIG Shift process: As the figure shows, a person is in the “current” normal, balanced state before a life-altering event such as the diagnosis of celiac disease. His balance is disrupted and he questions everything he thought he knew. Limbo begins when he discovers old “truths” no longer serve him, and he has to figure out a new tact. This is a stage of shaky ground, where nothing is consistent. But, as humans, we seek consistency and normalcy. As we experiment with new “truths,” we establish a new set that work, and then we have a new definition of consistency. At that point, we have gone through the BIG Shift process. But note there are arrows from the new state of BIG Shift back to the limbo stage. We go back and forth as “truths” and resolves are disrupted. Coming to grips with the gravity of my disease is what imprinted that Thanksgiving “flour” experience in my memory (see Chapter 5). You may recall, everything was going along fine until the bag of flour was plunked down on the counter, causing flour dust to fill the air and settle on food set aside for me for dinner. The shift from mundane ritual behaviors, to survival mode, trying to avoid inhaling or ingesting gluten was when I entered into the limbo stage. I realized I had to redefine “truths,” juggling participating in rituals and coming to terms that engaging in activities that are normal for most, are health-threatening to me. It was the moment when I realized that social and familial life, as I had known it previously would be forever altered by my gluten-avoidance needs. It was unsettling because I knew I would have to redefine how I attended and participated in all future social events. It hit me like a ton of bricks, when it dawned on me finally that I’d have to go to extremes that may look positively weird to an “outsider” and maybe even seem extreme to a person with asymptomatic celiac disease. Jean’s Story - Thanksgiving Revisited The year after the flour incident, we were invited back to Dallas for Thanksgiving. Empowered by the stories I heard from respondents who had experienced the BIG Shift, I tried a new approach. I told my hostess that I would be providing my own food this year. (She seemed relieved that she did not have to accommodate my needs.) My husband ensured we had a hotel with a kitchen, and after we landed, we headed to the grocery store, so I could purchase gluten free foods to eat during our stay. While my friend, her husband, her daughter’s family, and husband dined on the beautiful buffet of turkey, dressing, rolls, gravy, and many lovely desserts, I ate my food in a bowl that I brought with me. Nobody batted an eye, and nobody probed about my diet. I ate alongside everybody else, participated in the lively conversation and enjoyed a pleasant experience. That experience empowered me to bring my bowl to all food-related social events that take place in homes thereafter. With that success under my belt, I experienced the BIG Shift. I accept my dietary requirements with no apology. I have a new attitude. On the Other Side Once through the BIG Shift, on the other side of limbo, a person has a new “I’ve got this” attitude, exuding comfort with newly established “truths” and the confidence to implement them. Life is much better once a person experiences the BIG Shift. For example, take Mila (#10) who considered her husband’s comment about the gluten free waffles as the final straw (see Chapter 5). In that moment, Mila went from the limbo stage to entering into the BIG Shift. She started taking initiative to rid herself of her uncaring husband, realizing that no matter what she did, he wasn’t going to change, and that continuing to live with him was going to ultimately cause her peril. I’m not advocating divorce as a way to deal with a non-gluten-free household, but I applaud the initiative she took to control her own life. As I’ve mentioned before, for Mila, this was a turning point. She realized that his lack of cooperation was a telltale sign that he was not interested enough to fix other problems. She concluded he was inconsiderate in many other aspects of their marriage; this was just one example. She also knew that she had to take the initiative to make a change, scary as it was, to protect her health. She moved from the limbo phase to the BIG Shift, where her life was now in her control, not in the hands of an uncaring spouse. Lucy (#26) describes a reoccurring family situation in this scenario: I had a birthday for my son’s party. I have always been the one to work really hard at cooking a gluten-free cake so he could eat it and I've become very good at it. I feed gluten people gluten-free and they don't know. So, there was a birthday party, and I made gluten-free cupcakes and cake, and I had other snacks for the other little kids. It was all gluten-free. And my family shows up, and they brought a regular cake, and they put it on the counter and they said, ‘Here, we brought this because we knew you would make that gross gluten-free cake, and we wanted to be sure that we had something else.’ She described this as typical behavior, saying she tries not to remember the hurtful things, because she wants her family to be a part of her life. When asked how she dealt with this situation, she said: I absolutely refuse to react to something like that. So, I took the cake and I said, ‘Okay, thank you, I will just put it over here. And I just set it on the other end of the counter so it is not close to the gluten-free stuff. That's it. I did that and walked away. But, like I said, after 15 years of just being very, very consistent things have improved. Lucy’s adamancy in spite of her family’s insulting behavior is an illustration of how the BIG Shift evolves and “plays out” over time. Her consistency ensures her sustained health, and the health of her son in family food-related situations. Let’s consider Grace’s (#17) home situation where her husband insisted on eating only “beige” foods such as pasta, pastries, bread, cookies, cake, buns, crackers, etc. She lived in the limbo stage, dodging gluten at every turn, and suffering the consequences of a reaction while co-existing in that toxic environment. She told of how he repeatedly taunted her to eat gluten, asking, “How much can you have? Can’t you just have a crumb?” Her husband did Internet research, to prove her wrong when she resisted. Grace says, “That was very, very stressful.” She confronted her husband and asked him to stop eating those gluten-containing beige foods. He refused. They reached an impasse because of his gluten-doubt attitude. This exchange illustrates the non-adaptive response where she could have existed in the limbo stage of unrest and no resolution had she continued to live with his gluten-doubt attitude, but she ultimately moved to their vacation home in California, to be closer to her daughter who goes to school there. By changing locations, she shifted to a place of equilibrium describing how she now cooks beautiful, colorful meals for herself and makes it a daily practice to go to the farmers market to purchase interesting vegetables to accompany her dishes. Scarlet (#14) conveyed the BIG Shift with a simple story. She has a collection of pretty lunch boxes that she brings to all of the food-related occasions she attends. Her family and friends know she is going to bring one, even to a wedding (she has a special wedding lunchbox). Scarlet has a lunchbox for serious business lunches and another for fun gatherings. I really admire her attitude. She is so confident! When I talked with her, I was still in the limbo stage. I was still apologizing to people, trying to eat foods they said were gluten free, getting sick, and still explaining the nuances of my diet. But her acceptance of her dietary issues, and the way she gracefully dealt with them illustrated someone who had completed the BIG Shift, and gave me a lot of encouragement to stop wavering. She didn’t hide her food concealed in her purse either. She “put it out there” unabashedly without apology and enjoys the foods she makes for herself. I applaud! Her example empowers me to be decisive and helped me complete the BIG Shift. But wait, there’s more! After completing the BIG Shift, many of the respondents report how their identity positively transformed as a result of living with celiac disease. Some found themselves in related occupations, while others learned to be more assertive about their needs. Even though people adapt in different ways, there tends to be a pattern for how we remake ourselves with the disease. That is the topic of the next chapter – the individual’s transformation. I love this part! It’s where the endings are happy because people have figured out how to live with their new set of circumstances. Need help managing your gluten free lifestyle? People seek out Dr. Duane to live the lifestyle they dream of. Please visit www.alternativecook.com. Discussion Questions: Please describe a time when what you thought was “true” about having celiac disease turned out not to be true? How did it affect you? Have you gone back and forth in and out of the limbo stage? How do you navigate your way out of it? Please share your process of accomplishing the BIG Shift in your life. What’s been the biggest positive change as a result? References in Chapter 6 Andrews, H., & Roberts. L. (2015). Liminality. International Encyclopedia of the Social and Behavioral Sciences, 2(14). doi: 10.1016/B987-0-08-097086-8 Bruner, J. (1985). Actual minds, possible worlds. Cambridge, MA: Harvard University Press. Bruner, J. (2002). Narratives of human plight: a conversation with Jerome Bruner. In R. Charon, M. Montello (Eds), Stories Matter: The Role of Narrative in Medical Ethics (pp. 3-9). New York, NY: Routledge. Cannon, W. (1932). The wisdom of the body. New York, NY: W. W. Norton & Company. Charmaz, K. (2006). Measuring pursuits, marking self: Meaning construction in chronic illness. International Journal of Qualitative Studies on Health and Well-being, 1, 27-37. doi: 10.1080/17482620500534488 Corbin, J. M. (2003). The body in health and illness. Qualitative Health Research, 13, 256-267. doi: 10.1177/10497323002239603 Frank, A. W. (1995/2013). Wounded storyteller. Chicago, IL: University of Chicago Press. Haverkamp, B. E., & Young, R. A. (2007). Paradigms, purpose and the role of literature: Formulating a rationale for qualitative investigations. The Counseling Psychologist 35(2), 265-294. doi: 10.1177/0011000006292597 Hout, M. (2017). Religious ambivalence, liminality, and the increase of no religious preference in the United States, 2006-2014. Journal for the Scientific Study of Religion, 56(1), 52-63. doi: 10.111/jssr.12314 Koenig Kellas, J., & Kranstuber Horstman, H. (2015). Communicated narrative sense making: understanding family narratives, storytelling, and the construction of meaning through a communicative lens. In L. M. Turner & R. West (Eds.), Sage Handbook of Family Communication (pp. 76–90). Thousand Oaks, CA: Sage Publications, Inc. Koenig Kellas, J., & Trees, A. R. (2006). Finding meaning in difficult family experiences: Sense-making and interaction processes during joint family storytelling. Journal of Family Communication 6(1), 49-76. doi: 10.1207/s15327698jfc0601_4 Metchikoff, E. D. (2014). Examining knowledge of the gluten-free diet among non-celiacs following the diet (Doctoral dissertation). Retrieved from ProQuest (1527994) Nicolson, B., Babin, R., & Briggs, S. (2016). Exploring the effects of liminality on corporate social responsibility in inter-firm outsourcing relationships. Journal of Information Technology, 32, 47-61. doi: 1-/1-57/jit.2015.24 Peniamina, R. L., Bremer, P., Conner, T. S., & Mirosa, M. (2014). Understanding the needs of food-allergic adults. Qualitative Health Research, 24(7), 933-945. doi: 10.1177/1049732314539733 Rohrbaugh, M. J., Mehl, M. R., Shoham, V., Reilly, E. S., & Ewy, G. A. (2008). Prognostic significance of spouse we talk in couples coping with heart failure. Journal of Consulting and Clinical Psychology, 76(5), 781-789. doi: 10.1037/0893-3200.16.1.3 Samuels, E. J. (2003). My body, my closet: Invisible disability and the limits of coming-out disclosure. GLQ: A Journal of Lesbian and Gay Studies, 9(1), 233–255. No doi. Shanahan, C. (2017). Deep nutrition. New York, NY: Flatiron Books. Simpson, A., Oster, C., & Muir-Cochrane, E. (2018). Liminality in the occupational identity of mental health peer support workers: A qualitative study. International Journal of Mental Health Nursing, 27, 662-671. doi: 10.111/inm.12351 Somers, M. (1994). The narrative construction of identity: A relational and network approach. Theory and Society, 23(5), 605–649. doi: 10.1007/BF00992905 Valeras, A. M. B. (2007). To be or not to be disabled: Understanding identity processes and self-disclosure of persons with a hidden disability (Doctoral dissertation). Retrieved from ProQuest, LLC (3258056) Continue to: Gluten Centric Culture: Chapter 7 - Individual Transformation Back to: Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together

Celiac.com 01/14/2022 - Sometimes it’s hard to be a woman. —Tammy Wynette, 1968 Is your body a battleground embarrassing you with gas, bloat, pain, and dysfunction? In addition to that humiliation, do you also feel like people are judging you because your corporeal essence is too big, too small, or too noisy? Many people with food sensitivities or celiac disease are at odds with their most intimate companion, their body. This discontent is magnified when coupled with definitions of “feminine ideals” defined by the media, advertising, and celebrity role models. These ideals are unattainable or sustainable. Women in particular are taught to scrutinize each other for fashion, physical, and dietary infractions. We publicly convey dissatisfaction with our physical bodies, to always be “on a diet” in order to fit in, and to focus on physical attributes rather than intellectual endeavors. These pop culture edicts put even more pressure on those following special diets. In the previous chapters, we discussed how we live in a gluten-centric society (Chapter 1). We’ve identified several ideologies or “truths” that have emerged that cause trouble for those with food sensitivities or celiac disease (Chapter 2). Then we discussed some of the public venues where these ideologies play out (Chapter 3). Before moving on to how ideologies or given “truths” affect our home and family life in the next chapter, I want to now talk about the female body as a centerpiece for surveillance and scrutiny by others, and torment for it’s owner. Since 85 percent of study participants are female, it makes sense to focus specifically on feminine issues around the body. First, I’ll explain how cultural influences cause women to focus on dieting mostly for weight-loss, rather than for thriving on the “right” foods. I’ll point out the ideologies that cause us to overly scrutinize each other and ourselves. We’ll start with an overview of the macro-level influencers such as the media and corporations that define these “truths” in our culture. Then we’ll examine how these ideals impact individuals, but first I’d like to share a personal story. Jean’s Story - Associating Physical Issues with Diet I spent my whole childhood and much of my adulthood suffering chronic stomach pains and vomiting regularly. I was nauseated and often had a runny nose. My father had indigestion, too, so I thought it was normal to feel sick after eating. As an adult, I came across an article on stomach issues and dairy allergies in a woman’s magazine, while on a flight to Hawaii with my husband. Until that moment, it never occurred to me that food could be causing my stomach problems. Though it seemed like a monumental undertaking, on the trip, I decided to experiment with limiting my dairy intake. I avoided dairy for a few days and felt immediately better. Not yet entirely convinced, and lacking ideas for a substantive alternative, I ate cereal and milk before an all-day excursion later in the vacation. While hiking the stunning Haleakala Crater, my stomachache returned. I was nauseated, cramped, and uncomfortable—unable to enjoy one of the most fascinating landscapes I’d ever encountered. In that moment, it clicked: a lifetime of stomachaches and vomiting was caused—I was now certain—by dairy products. The Fascinating Human Body A few years ago, at the Denver Museum of Natural History, I attended the Body Worlds exhibit on the human body. Real humans were dissected to show the reproductive, circulatory, digestive, endocrine, immune, muscular, and nervous systems in a fascinating display. It was intriguing how these systems work together. I wandered through the exhibit full of awe and wonder. When it works, our body is truly remarkable, to be appreciated and honored. When something upsets its delicate balance, it is equally as curious to observe its ways of reacting to protect itself and to heal. Adapting to a physical malady also involves a psychological aspect too. Corbin (2003) conducted interviews on people who had a heart attack before age 65, asking how participant’s perspectives of their bodies changed as a result of the disease. She found that after an event such as a heart attack, or diagnosis of a disease, people detach themselves from their body by thinking of it as an object. This disassociation is part of the acceptance process, to re-establish trust and a new definition of normal. Participants in the study clashed with their bodies too. They opened their interviews by describing many physical maladies caused from consuming gluten. Ava (#7) describes her daily routine to go to work with the ever-present diarrhea many people with celiac disease experience: It's extremely frustrating because it's exhausting, and embarrassing. You are on your way to work and whoops, you have an accident. And then you have to turn around and go back home to change clothes. When I got to work late, I’d explain, “I had an accident.” And nobody would understand, so I’d have to get graphic to explain what happened. They’d say, “Well you should go to the doctor.” I’d say, “I’ve been to the doctor.” They’d say, “You should take Imodium and just deal with it.” Ava’s body’s unpredictability ultimately caused her to quit working. Many other participants described similar situations where their bodies embarrassed them by spontaneously vomiting, farting, or having diarrhea, or how they lived with debilitating, undiagnosed pain. I asked Ava if she struggled with her weight, thinking she must be very thin because she experienced regular diarrhea. She said, “Gosh no. I’m very large. I weigh 250 pounds. I have diarrhea so often, how can I possibly be obese? I should be thin as a rail. But when I found out that I was not actually absorbing any of the nutrients from the foods that I was eating, that explains why I am obese. I have malnutrition.” When she was finally diagnosed and altered her diet, her debilitating gas, diarrhea, and body mass reduced. Just as the body is a site of contention for those with food sensitivities and celiac disease, for many women, the body is an adversary as they struggle to attain what they perceive as their ideal weight. The dieter sees her body as a point of betrayal. In an out-of-control roller coaster, the body’s weight goes up when consuming delicacies or down when electing deprivation. Rather than seeing the body as a fascinating place to live in as we navigate the world, many view their bodies as an obstacle – something that defies earnest goals and restricts them from participating in many aspects of life. Diet failure reveals itself with the number on the tape measure, the dress that won’t zip, or the turned up nose of a friend who at that very moment is successful with her dietary goals and fitness achievements. And we hate her for her success as we wallow in our misery, wishing we’d bought a size bigger in that new outfit we thought we’d shrink into by now. Jean’s Story - Momma’s Diet My mother joined a weight loss program when I was nine years old. She was five feet, two inches tall, with intense blue eyes and brown hair. In middle age, she deemed her body was larger than she wished (albeit by today’s standards, she was “healthy”). Her weight annoyed her because this was a time when Twiggy had the coveted female body. Bone-thin was in! She counted calories, weighed everything she ate, and studied the program cookbook. In those days, a hot dog with cabbage in tomato sauce passed for a “skinny” meal. One dessert recipe from the cookbook instructed dieters to whip powdered milk, water, and a packet of artificial sweetener into a light cream. It tasted like sweet air. I left those meals feeling hungry and dissatisfied. My mother stayed with the program through the years, becoming a long-term member as she strived to achieve her ideal body. Foods were marked “good” or “bad,” depending on how fattening they were. Cookies and cakes were “bad” and fruits and vegetables were “good.” Year after year, she cycled through the loss and gain of the same 10 pounds, alternating between making “skinny” dinners, or rich, memorable “Sunday” dinners worthy of a magazine cover. As a dutiful daughter, I celebrated and commiserated on cue but since I was thin then, I didn’t need a diet program. In the 1980s, I worked for IBM. Their wellness program included a free diet program membership, offering lunchtime support-group meetings in the office. I arrived at the meeting wearing a dark green suit with a lizard pattern shirt and shoes. Immediately, I was ushered to the corner for the weigh-in. Stepping my 5’5” body on the scale, shoes and all, I weighed 124 lbs. The group leader looked at me, irritated, and said, “Why are you here?” “I think I’m allergic to dairy products and need help with my diet,” I responded. “We don’t deal with food allergies here. And you don’t weigh enough to join our program.” Her comments were loud enough for my curvy coworkers to hear. A few clicked their tongues and many rolled their eyes. I was humiliated and left to figure out a healthy diet plan for myself. Dieting is a woman’s project. —Corrinne Bedecarre, 1971 Dieting is a Rite of Womanhood The “thin trend” began in the 1960s with social-cultural influences directing feminine ideals. In the past sixty years, diet fads have swept the nation with promises of weight loss and health, with catchy brand names such as: “Skinny Bitch” and “The Zone,” or medical sounding names such as “Blood Type,” “Glycemic Index,” and “Macrobiotic.” Some are named after people, such as “Jenny Craig” and “Atkins,” or places like “South Beach.” A “diet culture” has evolved in the U.S. over the past fifty years, perpetuating gender biases that pressure women to pursue health, physical, and dietary standards (Lockford, 1996). Women have become “entrepreneurialized” (Thornton, 2011, p. 399) as companies profit from the diet awareness and able-body bias ideologies. Similarly, dieting women are “governed through their own freedom and subjectivity” (p. 401), as they flip through a magazine full of food ads and diet plans with thoughts of experiencing a fulfilling life with a slimmer, healthier body, thus upholding the ideology that a “fit, healthy body … is the best fashion statement” (Scott, 2017). In addition to pressuring women to attain certain physical features, magazines may “instill false confidence in one’s ability to achieve unattainable results through impractical strategies and time periods” (Sarge & Knobloch-Westerwick, 2017, p. 260). The effect of dieting is failure for 95% of the population (Statistics on Weight, 2011), and most dieters gain additional weight within a few years (Statistics on Weight, 2011). Websites targeted at weight loss generate $842 million, according to a six-year trend analysis conducted by Market Data Enterprises (2016) pointing to why dieting ideologies for women permeate cultural practices. It’s big business! Physical Ideals Between the ages of 16 and 45, women report trying an average of 61 diets (Smith, 2012). The weight loss industry has flourished in popular culture due to the rising weight of many Americans. Controlling one’s body by limiting caloric intake has become common practice. Physical archetypes of the female body perpetuated in the media since the 1950s (Montanari, 2006) have led to dieting as a “permanent rather than temporary condition” (Andretta, 2015, p. 470) for the past half century. Gender inequities and cultural norms complicate social behaviors specifically by affecting women and how their bodies are viewed by society. The exemplary body in Western culture is able, fit, and healthy (Spitzack, 1993). This obsession with attaining physical perfection is a form of oppression, as women strive to maintain their goal weight and an optimal physique in order to be accepted (Bedecarre, 2005). Dieting seems to be a rite of womanhood after childbirth, to thwart off additional pounds from aging, or to attain a healthy body. People are pressured by the media to lose weight. Further, media exposure, along with feedback from family and friends affect “eating attitudes and behaviors” (Ata, Ludden, & Lally, 2007, p. 1033). Studies show that women who viewed advertisements depicting the ideal feminine body were more likely to convey dissatisfaction with their bodies afterward (Levine & Smolak, 2002; Yamamiya, Cash, Melnyk, Posavac & Posavac, 2004). Millions of Americans engage in dieting with the goal of weight loss or improving overall health and physical function. Diet Consciousness How did this diet consciousness evolve? For the past 60 years, large dieting companies have defined American food practices and gender-based ideologies particularly among women. With millions of members, 90% of whom are women (AdAge, 2011 quoting MarketData Enterprises), these companies have had a pervasive influence on women’s sense of the “perfect” body (Lockford, 1996). Their ideals of “wellness that works,” reflect that a fit, healthy body is a coveted symbol of success and competence (Bentley, 2005). Some of the companies provide group support and camaraderie of others striving for similar goals. Some programs help members attain their goals through behavior transformation techniques and weekly attendance at face-to-face or online support group meetings. The support-group-style meetings reinforce that “weight consciousness is principally a women’s condition” and diets are something you go on and off of (Bayrd, 1978 as cited in Lockford, 1996, p. 291). Surprisingly, when compared to other popular weight loss programs, one of the most popular programs yields the least weight loss per year (Statista, 2017a) -- at least 2.6% greater weight loss than those assigned to a control” group (Gudzune, et al., 2015, p. 1). This means a successful 150-pound dieter would benefit by losing 20.5 pounds on the program versus 20 pounds going it alone in a given year. The difference is that the person going it alone would not have access to the support systems offered by the program. National dieting companies cultivate a powerful diet consciousness. Support meetings and apps attract millions of subscribers who learn accountability and earn rewards for compliance and goal attainment. Celebrity endorsements instill ideal standards for behaviors of everyday people (Schultz, Nolan, Cialdini, Goldstein & Griskevicius, 2007). Publicly awarded charms, group meetings, and weigh-ins create a culture of constant surveillance (Lockford, 1996) and reinforce mastery over one’s body as the symbol of success (Bordo, 1993). Also, the practice of setting goals, and attaining them gives participants a sense of accomplishment (Heyes, 2006). Dieting ideologies are common in our society. It is normal to say, “I’m on a diet” when declining to eat dessert, or foregoing the rich sauce. The wild success of the weight loss industry in the past half-century has made comments such as this part of our accepted culture. Performing Womanhood The popularity of weight loss programs have created ideologies on how women “perform” womanhood, perpetuating these ideals where “culture’s grip on the body is a constant, intimate fact of everyday life” (Bordo, 2003, p. 17), and self-esteem is linked to body image (Harter, 1999). Weight is a common topic of discussion among my participants, as exemplified by Arina (#47) who weighed 160 pounds at 5’5” before being diagnosed with celiac disease; after going gluten free, she lost 30 pounds. Without being asked, many female respondents volunteer their current weight and fluctuations after being diagnosed and going on the gluten-free diet, expressing frustration at weighing too much or too little. Those with celiac disease are stereotyped in the medical community as being ultra thin, however this is not true. People with celiac disease come in all shapes and sizes. Some study participants who were ultra thin report being relieved to gain weight after being diagnosed with celiac disease, such as Ivy (#40) who gained ten pounds once off of gluten. Layla (#66) talks of being betrayed by food, saying: “When I was younger, before the dietary change, my favorite foods were glazed doughnuts and French fries. It is impossible to have gluten free glazed doughnuts. There was a bit of a sting when I found out it was my favorite thing that was making me feel so sick. I felt hurt and betrayed by my body, and the foods I loved.” Layla’s statement describes the conflict between our favorite foods and their negative impact on our bodies. Jean’s Story - Eating Frenzy Years after going off dairy, feeling a little better but not great, I was finally diagnosed with celiac disease. Desperate to feel better and perplexed about what to eat, I decided to eat only vegetables, berries, fish, chicken, seeds, and nuts. I did this for a long time, and even though I was a lot better, I eventually felt deprived on that drudge of a diet. One Christmas, I stuffed my husband’s stocking with a bag of dark chocolate covered almonds. He politely offered me one when he opened them on Christmas morning. I ate one. Then perhaps from having a little ketosis from eating so few carbs for so long, I ate the whole bag as he looked on with surprise. I couldn’t stop! I scarfed those chocolate almonds like frenzied maggots eat carrion. That taste of sugar set me on a bender. In the following months, I indulged. I developed gluten and dairy free recipes for chocolate pie with brownie crust, peanut butter sandwich cookies with sugar on top, cheesecake with a graham cracker crust and strawberry sauce on top, chocolate cupcakes with marshmallow filling and chocolate icing, banana muffins with chocolate chips, carrot cake with raisins, pecans and thick white icing, chocolate chip cookies, butterscotch pie, lemon meringue pie, fudge, angel food cake, gingerbread, oatmeal cookies with chocolate covered raisins and pecans, pineapple upside down cake with sticky brown sugar on top, sweet cornbread, bread sticks, pizza, focaccia, strawberry shortcake, cherry cobbler, baked custard, puff pastry, chocolate soufflé, lemon torte... all of the foods I ate while growing up. The bender was good in a way, because it enabled me to develop most of the recipes in my Bake Deliciously cookbook! I became obsessed with temptation, causing me to forsake my dietary resolves, seeking to fulfill myself with sweet treats, triggered from eating those sugary chocolate almonds. It was no different from being an ex-smoker smoking “just one” cigarette, or an alcoholic taking “just a little” drink! Those delicious chocolate almonds triggered me to an orgy of sugar consumption. I got along fine with my delightful sugary snacks until one day when I had a business meeting and had to wear a suit. I put on my favorite worsted wool suit (the one I’ve worn for years) and I couldn’t get the pants zipped! I needed four more inches. I had gained weight. I felt betrayed by my body once again. Being gluten and dairy free wasn’t enough to satisfy my body’s needs. In order to be thinner, I had to go on a reducing diet. I needed to find a diet program! (It never occurred to me to buy a bigger suit.) The best slave doesn’t need to be beaten, she beats herself. —Erica Jong, 1991 Perpetual Dieting Women’s weight is a sore topic, and one many struggle with for a lifetime. Why is this? Aside from childbirth and sporadic exercise plans, I think it is because everywhere you look there are pictures of tempting foods and because food norms have drastically changed. It used to be that we were told to eat three square meals a day, but now, advertisers encourage us to eat throughout the day. Further, it used to be that we only ate while sitting at a proper table. Now it is acceptable to eat virtually anywhere. Fast food is readily available to pick up on the way home from work for dinner and ride-share drivers deliver food from almost any restaurant. While many restaurants and fast food joints offer healthier options such as veggie bowls, salads, and lean meats, when hungry, it is tempting to throw in the fries or the delectable dessert. It is just too convenient to eat these ubiquitously available foods. This is not a new problem. Margaret Mead said this in 1971: “The problem for great numbers of Americans is not how to get enough food or how to be well-nourished, instead it is how to fend off the insistent pressure to eat” (Mead, 1971, p. 19). Bordo (2003) echoes this 30 years later by observing that “almost all of us who can afford to be eating well are dieting – and hungry – almost all of the time” (p. 14). Women reported feeling guilty 11 percent of the time after eating certain “forbidden” foods in the course of one week (Steenhuis, 2009). That speaks to the power of advertising and constant reminders on social media. According to the CDC, 42.4% of Americans are overweight (CDC, 2017-18). Disparagement of the body and its physical enjoyment of food are viewed by some women as “disgusting and transgressive” (Magee, 2007, citing Bordo, 1998, p. 18) by saying self-judging statements such as: “I was such a pig,” or “I can’t believe I ate all of that,” or “I am so disgusted with my weight, I can’t believe how fat I’ve become.” Food “porn” encouraging excessiveness is commonly displayed on TV with concoctions such as eating hamburgers using glazed doughnuts as buns, topped with cheese and bacon. It is common to go to gatherings and hear about the latest “sinful” dessert someone has devised with names such as “Death by Chocolate” (Desaulniers, 1993) and ingredient combinations of candy bars, whipped cream, brownies, ice cream, nuts, etc. (Incidentally, this recipe has evolved to no less than 15 iterations online!) Or “crack,” that winning combination of salted peanuts and candy corn. Temptations abound, and participation is a way to being accepted in the “club.” Eating is social, and as discussed before, not participating in it causes subjugation. When people get together and there is cake, wine, and chocolate, who wants to be the person abstaining? That isn’t socially acceptable. It’s not fun either! We’ve discussed the cultural influencers above. Next, let’s examine the specific ideologies that shape the diet mentality and how it plays out in our daily lives. By labeling these, and pointing them out when we experience them, we start to empower ourselves to change these “truths.” How do we know when we are successful? Change is a gradual process as people revise their long-held beliefs. We know we’ve affected positive change when we listen to comedians from the last generation and realize the jokes they are telling are totally inappropriate in this time. Or on the contrary, when we watch a movie from yesteryear and see how those affected are treated then versus now… sometimes we realize we haven’t made any progress and wonder if things will ever change. There isn’t a “social change playbook,” but steps followed by those wishing to affect social change include: A relentless effort to create awareness of how the dominant hegemonic group affects those who are dis-empowered. Figuring out how to peacefully show those who represent the status quo, so they are aware of the plight and hear the voices of those usually silenced or oppressed. Reclaiming and redefining maligning labels – redefining the maligning words to positive meaning. Developing and incorporating language to use to call out infractions and publicly pointing them out, so others understand and use the language too. Unless the status quo is disrupted, those in the dominant hegemonic group are complacent. I’ll develop this more in a later chapter, but as you read through this chapter, think about how women are influenced by media and corporations to see their bodies as a battleground, rather than something to uphold, love, and nurture. Keep in mind that in order to change ideologies, we need to first label them. The next section identifies some of the most prevalent ideologies surrounding women’s bodies. Diet Discretion Ideology The diet discretion ideology is when others are overly interested and often (but not always) judgmental about our dietary choices. Ideologies about diet adherence equate to a “perfect” woman with a “perfect” body. It is commonplace for a woman to ask another about her diet. The other night, I was eating dinner at a large wedding, sitting next to someone I’d never met before. She asked me what I did, and I said that I was writing a book about the social aspects of food sensitivities. She told me a touching story about how her son had been diagnosed with Autism when he was young, and after years of seeking help, they finally found a doctor who suggested a gluten and casein (dairy) free diet. Within three months, her son went from non-verbal to verbal and regained his health through dietary changes. In the meantime, she said, “I know I shouldn’t eat gluten and dairy, but I do, and here’s what happens.” She pulled out her cell phone and showed me pictures of her face and neck with a flaring rash. Then she asked me what my diet consisted of as she assessed what I had eaten on the plate in front of me. This didn’t surprise me at all, because it happens all the time and illustrates several levels of the diet discretion ideology. Women are in charge of providing nourishing meals for their loved ones, and constantly seek to learn how other’s attain health through various practices including diet. To do this, we are innately trained to observe what others eat. It is a form of survival, and a way of human bonding. Just as this book strives to create awareness of our gluten-centric culture, lately organizations have formed to de-stigmatize stereotypes of curvier people. These societies seek to create awareness of weight discrimination. Rather than apologizing or hiding those curves, women are encouraged to be proud of their bodies, accept them, and celebrate it’s ability to do the things in life they enjoy doing. It is a power movement that may change some of the biases formed over the past half-century. One recent result is seeing women of all sizes in ads, films, and on television, playing in desirable roles, doing activities, living a well-rounded life, rather than seeing those that don’t meet an arbitrary ideal as the butt of a joke. This is a positive change pointing to social acceptance of all body shapes. Celiac-Specific Dietary Discretion In a culture of dietary surveillance, women with celiac disease are subject to a host of assumptions around their requirement to maintain a gluten free diet. Some women participants experienced suggestions that their gluten free adherence is actually a form of self-punishment. Others are accused of trying to evoke sympathy, as exemplified by Sadie’s (#41) mother. She dismissed her daughter’s illness, noting, “You are just trying to get attention.” Some even face outright denials such as when Carrie (#4) reports that her daughter “didn’t believe in” the need for a gluten-free diet and says it is a “stupid fad.” Similarly, Julia’s stepmother “doesn’t believe in ‘Celiacs,’ or that people have food allergies.” These practices lead to obsession with food, weight, and the development of disordered eating behaviors. This sentiment is illustrated by Julia’s (#49) father’s chide when he commented, after learning of her condition, “If you are unable to eat so much, why are you so chubby?” His observation reinforces her need to be aware of her appearance, and that others are observing her body size. Women self-regulate their diets to fit within the confines of current trends. When not compliant, women often have feelings of insecurity, shame, guilt, and negative self-image (Science Daily, 2011). When women successfully lose, weight loss companies tout feelings of “true self-knowledge, self-development, self-mastery, and self-care” (Heyes, 2006, p. 145). Women are constantly reminded of success or failure because mirrors and scales are gauges of self-regulation (Bedecarre, 2005). Another ideology that results from over-awareness is the by-the-numbers ideology. By the Numbers Ideology Dieters quantify everything – how much they weigh, how many grams of fat, carbs, and protein that they eat, the total number of calories in a given day, their measurements, etc. We are taught to do this when learning different diet programs. And it’s normal because as we strive to learn what a serving size is (often a quarter of what we think!) we have to learn these things to manage weight. We enjoy success from this too because by limiting our carb and fat intake to an ideal number of grams per day, the scale rewards us with lower weight, and we can finally wear those “skinny” clothes in our closets. The annual doctor’s examination brings on another set of numbers tied to what we eat – the complete blood count, showing the amount of lipids in our blood, the glucose and HbA1c number that indicates diabetes, and giladin, tTG, IgA, and/or IgG numbers for those with celiac disease. And since we know that our numbers improve by watching what, and how much we eat, it is easy to find yourself living by the numbers – counting everything and monitoring the outcome. It’s an analytical approach to discovering “truths” for your body. However it is completely frustrating when attaining undesired results even after adherence to a recommended diet plan. Why doesn’t it work? Because every body is different! There is not a one-size-fits-all diet plan. It is something we have to learn for ourselves. It takes time, patience, education, and a willing doctor to help us navigate it. It also requires us to surrender to the fact that we have inherited genes that work against us. Size Surveillance Ideology Starting in childhood, girls are pressured to stay thin. Parents Google “is my daughter overweight” and “is my son a genius” (Stephens-Davidowitz, 2014). This illustrates what parents focus on depending on the gender of their children perpetuating the notion that genius boys and thinner girls have the best prospects. Throughout life, women monitor each other’s weight, so much so that “you can remember if their weight was ‘up’ or ‘down’ at different times of their lives” (Bedecarre, 2005, p. 220). This illustrates the size surveillance ideology. Rather than focusing on each other’s accomplishments, we seem to be preoccupied with how we look and whether or not we have succeeded on our diet plan. It is a regular topic of conversation. A weight-conscious culture and the fanatical behavior it influences combined with regular peer-surveillance, (Spitzack, 1993) make dieting a gendered issue and source of social conflict, magnified when coupled with a food allergy. When someone finally conquers an addiction, or attains a fitness level, it is something to be celebrated. But an unintended downside is that your proud announcement causes everybody to look, and look again next time to see if you still are complicit (Lockford, 1996). Women are defined by their physical attributes to the point that their “humanity has been dismissed” (Bedecarre, 2005, p. 215). Being overweight instills self-loathing and emotional strife (Lockford, 1996) in many women who feel they are substandard because of their bodily size. As a result, our culture subjects women’s bodies to constant surveillance (Bordo, 1993). It is ironic that what once started off as an individual quest to watch her weight became a cultural norm of watching each other’s weight. Women regularly scrutinized each other’s weight and food-related behaviors (Bedecarre, 2005) in ritualistic surveillance practices focusing on defects (Spitzack, 1993). Women judge those who have allergies for consistencies and behavior (Samuels, 2003). Once a coworker watched me eating a gluten-free cookie. She said, “I knew you weren’t 100% gluten-free – look you are eating a cookie!” I didn’t even bother to explain. Dietary discretion and size surveillance by others is exemplified by Ruth’s (#69) comment: After many years of trying to fit in at extended family dinners, pretending to eat but not eating a thing, I finally decided to bring my own food to my aunt’s house for brunch. It was Easter morning, and the family members were eating gooey cinnamon rolls, sausage, and chocolate Easter eggs – foods I dearly love. They were commenting to each other how good it all tasted, pairing Easter eggs with bites of cinnamon rolls. I opened my sack and began eating. Out of the corner of my eye, I thought I saw my aunt sneaking a picture of me eating my food. Was she taking a picture of me because I was eating my own food? I looked up and she hurriedly put the camera away. I felt like my resolve to bring my own food was being judged and watched. I was embarrassed and wondered if she was going to post the picture of me eating the foods I brought on social media. Ruth describes how she felt when she finally resolved to bring her own food. I imagine it was hard for her not to feel deprived as she listened to her family describe the treats they were eating, but she shared that she was comfortable with her decision because she knew it was the only way to stay healthy. Her feelings of familial acceptance changed when she caught her aunt taking a picture. That heartbreaking act showed that her aunt’s previous encouragement for Ruth to bring her own food were disingenuous. What fortitude and a charity of forgiveness Ruth must have had to over look her aunt’s peccadillo and to press ahead with her resolve. This scene Ruth describes illustrates the minute-by-minute challenges we face whenever we defy established customs or norms, no matter why. It takes courage to persevere. Clara (#70) says, I have a friend who tells me every January, “I’ve gone back on the diet.” And every year she describes the new tweaks the plan has taken. It is normal for me to want to drop my eyes to assess her body. After years of conditioning, I have learned not to look, and not to ask as the months go by. While I want to support her in this endeavor, I do not want to scrutinize her weight. Predictably, every June she announces she has “gone off of the diet” and then eats whatever she wants until December. It is a cycle she has repeated for twenty-five years. It works for her because ultimately she nets the same average weight. Ideologies of feminine physical perfection kick in and the woman’s food choices and dieting success or failure becomes an acceptable topic of conversation (Dworkin, 1989). It is a yo-yo cycle that for many goes on for years and years, losing and gaining the same ten to twenty pounds into perpetuity. Sexual Scrutiny Ideology There seems to be a separate set of medical standards for the genders. For example, Kaylee (#52) describes how she went to three doctors, who prescribed pills for her complaints that included “painful constipation, a throat full of phlegm, and hair falling out.” She also gained weight. One doctor said it was hormonal, another prescribed steroids. One thought she had lupus. Finally, two years later, she found a doctor who suggested eliminating gluten from her diet, and that “literally changed everything.” All of the complaints went away in time. Kaylee wondered if a male had presented the same symptoms, if they would have been subjected to the same years of rigmarole. According to Stone (1995), women are more prone to concealing their disabilities and are “morally responsible for their own imperfections” (p. 414), blaming eating habits and lack of exercise for their maladies (Spitzak, 1993). Individuals who fear there is something wrong with their health regularly “misidentify the factors that were responsible for the maladies” (Davis, 2005, p. 171) and are often misdiagnosed by the medical community. Since there is already a propensity for food-related disorders in this demographic, the woman may not be taken seriously when she presents with a gastric-related illness and the doctor may erroneously conclude that her symptoms are caused by a life-long-cycle of dieting practices. This mentality illustrates the sexual scrutiny ideology. Many women with celiac disease who have been told there is nothing wrong with them, or that their symptoms are “in their head,” or misdiagnosed by physicians, are left to suffer for an average of eleven years before learning that gluten is the cause (Green & Jabri, 2003). Celiac disease is overlooked for a variety of reasons, including the inability to correlate systemic symptoms with celiac disease, inadequate medical tests (Fine, 2003), and myths indicating that it is a “mal-absorption syndrome of childhood” (Green & Cellier, 2007, p. 1731). Misdiagnosis, coupled with accelerating symptoms causes those with celiac disease to experiment with one diet or another in order to feel better, sometimes leading to peculiar eating practices. Unintended Disordered Eating Patterns The intense focus on dieting promoted by diet companies may be one of the primary reasons that 90% of those with eating disorders are women (Arroyo & Segrin, 2013 citing American Psychiatric Association, 1994). Multiple years of dieting to attain physical ideals are a form of oppression, as women strive to maintain their lifetime goal weight and an optimal physique (Bedecarre, 2005). In addition to dieting in private, women also self-deprecate their bodies in public in order to be accepted by their peers (Britton, Martz, Bazzini, Curtin & LeaSchomb, 2006). In fact, public claims of physical satisfaction with their bodies led to women being ostracized in social circles (Britton, Martz, Bazzini, Curtin & LeaSchomb, 2006). So we learn not to talk about our physical achievements, and to hide our dietary idiosyncrasies. But as we achieve health, we strive to learn more about how to maximize our success. What began as a quest to attain health through dietary choices may escalate in time to an obsession, perpetuated with positive results (Oberle, Samaghabadi, & Hughes, 2017). Those with food allergies are prime candidates for the development of disordered eating as they strive to find foods that do not make them sick. Extreme practices create an identity through food (Guptil, Copelton, & Lual, 2013), causing relational strife for newly diagnosed individuals, as their families adjust to new eating behaviors, which may include a only a few “safe” foods. It is not uncommon to hear someone declare, “I’m vegan” or “I’m gluten free.” Piper (#43) says, “I think about food all the time.” She goes on to describe a time when traveling in France as her sister enjoyed wine, cheese, and bread – foods she no longer can consume. Piper said, “I felt sad. I couldn’t do what everybody else in the world can do.” Hailey (#38) says she feels that people with celiac disease are more sensitive to other foods too. She notes, “If I want to feel good, I just eat fruits, veggies, and meat.” Sixty one percent of the study participants reported consuming a diet comprised mostly of lean meat, vegetables, and fruits. William (#60) describes the extremes he has endured in order to regain his health. He was diagnosed at age 45. Still not feeling well on the gluten free diet, six years later he did a food sensitivity test and learned he was sensitive to 39 foods. He struggled to find professionals who could help him, spending a lot of money in the process. He learned from trial and error that his best diet consists of meat (grass fed beef and meats raised with no antibiotics), vegetables and some roots such as sweet potato. He eats very little fruit, and no nuts or seeds. He eats no coconut oil or avocado because he has found both cause skin rashes. His body does not tolerate alcohol, wine, garlic, or onions. He rotates the foods he eats to aid in the digestive process. Further, he takes supplements to substantiate the digestive process including vinegar, hydrolyzing enzymes, de-glycerized licorice, pepsin, glutamine, zinc carnosine, magnesium, turmeric, calcium, and magnesium citrate. Doctors prescribed antacids for his stomachaches, and he learned that was the worst thing a person with celiac disease could take because it caused pancreatitis. Though he is aware he is being observed and discussed when visiting extended family to join them for a meal, he prepares his own using the microwave or hotplate in the basement to avoid being cross-contaminated, or from breathing the gluten-filled air in the main kitchen. All of these practices have made him feel better in spite of being 5’10” and weighing 120 lbs. He would like to weigh 160 lbs. He has lived this way for 17 years and admits it is tough, but his efforts have paid off. He has healed his skin rash, eliminated chronic constipation, and rid himself of stomach pains. This illustrates someone who has taken the initiative to learn “what it takes” to fix himself and to feel better though his efforts may be deemed extreme. In the process, he has endured surveillance and scrutiny by family and friends. This is a glowing example of courage and taking initiative to regain health. Others describe practices that would classify them as “disordered” because thoughts of food prevail and affect all other aspects of life yet they maintain these habits to stay healthy. Allison (#35) after describing the physical misery she endured before being diagnosed, and despite the hardship it imposes says, “The gluten free diet saved my life.” Attaining a healthy body can drive a person to practice extreme eating habits as a form of self-preservation. Liza (#68), describes her daily lifestyle: As long as I can make my meals myself, I’m fine; but the minute I have to rely on someone else’s judgment, whether it is a pharmacist, doctor, dentist, food server, or whatever, to deem what is OK for me to put into my mouth, I feel vulnerable. Unless you are highly sensitive and reactive, and live with the disease, you have no idea what it is like to worry about every single instance where you could be cross-contaminated. People are careless, forget, or don’t take it that seriously. Some just “throw up their hands” in frustration with my special needs. I’d rather take care of myself, but really fear the day I may need to rely on others to feed and care for me. If there are crumbs on the table in the coffee shop left by the previous occupant, or in the air in my friend’s home from baking cookies yesterday, or in the glue of the new paper straws, life becomes a never ending game of Russian Roulette to avoid being contaminated. I’m constantly wiping down surfaces, sometimes breathing through a mask (to avoid flour particles!) and always wary. Gluten can be in some very unusual things that don’t have to report it, such as hairspray, teabags, hand lotion, over-the-counter pills, and pharmaceuticals – many things that you wouldn’t expect. Existing day-to-day in this gluten-filled world is risky. Crossing the Line The Anorexia Nervosa and Associated Disorders Organization estimates that 30 million Americans across all ages and genders suffer from an eating disorder at some time in their lives. What’s more, among women over 50, one-in-ten exhibit eating disorder behaviors (ANAD, 2020). Eating disorders are a serious illness that can result in altered lifestyles, and death. Disordered eating begins with spending an inordinate amount of time thinking about physical health, through diet, exercise, reading labels, understanding the functions of foods, and limiting the diet to the few foods that don’t cause “trouble.” Jean’s Story - I Haven’t Farted Since 2005! I’ve been called “a dysfunctional eater” by acquaintances because I omit whole food groups. And there are medical professionals out there that would say the same thing. I am not anorexic – I don’t hate food. I love it. I consider it an art form. To create a successful recipe with alternative ingredients is rewarding. But many foods don’t like me. I’m frankly tired of the havoc foods impose on my body. Most people look at a feast with zeal. I look at it and think, “that will cause my forehead to puff out, that will cause a rash, that will make me bloat and fart, that one causes rosacea, that one might get stuck in the digestive process, and on and on.” After I told a nutritionist that I was allergic to dairy, she insisted that I had to have it in my diet in order to get calcium! In her narrow understanding of food, fortified dairy products were the only source of calcium. We have to realize that a lot of people who judge us are ill-informed, and maybe non-reactive to food. I’ve encountered people who eat anything and everything and shake their head at me when I refuse to. Some even have told me, “If it’s made with loving hands, it will nourish your body.” Not if it’s got the wrong ingredients, thank you very much! My lifestyle choices do not feel disordered or dysfunctional. Rather, they serve me. After finally being diagnosed, and eliminating gluten and dairy from my diet, and then all grains, and all processed foods, I experienced profound health in my body. I stopped my sugar indulging and went back to eating vegetables, some lean meat, berries, nuts, and seeds. I feel better at this age than I did 20 years ago. I have plenty of energy to serve my daily needs. In fact, I think it is kind of surprising when friends younger than me have to go to bed at 9:00 PM because they just “run out of gas.” I don’t experience that. My body finally functions relatively normally. I sleep well, and nothing chronically hurts. These changes came from focusing on my diet, carefully tracking what I ate and how I felt a few hours and days later. Over the years, I learned which foods my body can process without giving me trouble, so I focus only on eating those foods each day. As a result, I maintain the same weight. That is a far cry from how I was 15 years ago when I was larger, bloated, gassy, covered in a terrible itchy rash, and had rosacea on my nose. I was dying then. I am thriving now. It’s been a hard road, though, to eat foods and experience their affects, sometimes most unpleasantly for weeks in order to learn what “works” and what doesn’t with this fascinating body of mine. It comes with its own reward. The reward is a “working” body, which if you have, you don’t realize what a gift it is until it is gone. The war is over. My body and I have achieved peace. Most importantly, I haven’t farted since 2005! Orthorexia – Healthy Anorexia People who focus a lot of energy on their health, to the point where it is a major feature of life are termed disordered or dysfunctional. People who carefully read labels of the foods they eat, who limit their foods to a very few, who have regulated exercise routines and spiritual practices are termed “orthorexic” or “healthy anorexic,” where someone maintains her health while practicing “disordered eating practices” (Musolino, et al., 2015, p. 18). By their definition, because I am gluten-free, dairy-free, grain-free, sugar free, and mostly vegetarian (except fish and chicken occasionally), because I read labels carefully (to avoid these foods, and other allergens), have planned meals with few foods and a regular exercise regimen, I’m orthorexic. Well bring it on! I’m much better than I was when I was “normal.” I also know that I have food anxiety. If I am at home and can control my diet, I’m fine. But when I travel, and have to rely on other people’s decisions about restaurants, have no way to store food, and have to carry whatever I am going to eat, I panic. Food anxiety isn’t a fun thing. Knowing I have this helps me plan around it, but the best made plans don’t always work. Later in this book, I’ll detail my travel strategies, but when border control takes away all of my food upon arrival to a country for a two week trip, panic sets in. It’s a trigger that can cause a cascade of fear-induced extreme behavior. Knowing this about myself helps me to control it with adaptive strategies. Adaptive strategies include eating few foods as reported by Julia (#49) who says, “I eat the same foods day after day because I know they don’t make me sick.” Julia struggles with anorexia largely because her family does not help her find gluten free foods, so she avoids eating, fearing she’ll be sickened. It is easy to accidentally become anorexic when on an extremely restrictive diet (Ricca, et al., 2000). Remember the woman I met in the pet shop from Chapter 1 whose niece was diagnosed with celiac disease and then who became anorexic? That poor girl was dodging gluten in her home, with a family that did not embrace her needs, or help her. As a result, she developed anorexic behavior, where she feared food. Who can blame her? She was uninformed, and getting cross-contaminated on a regular basis. In this case, the dietary restriction triggered the disorder (Ricca, et al., 2000). Her hysteria to stay well caused her to fear food, and eat the very few items she considered safe. If her aunt is to be believed, the girl developed mental illness, likely due to malnutrition, coupled with the fear of what foods would do to her body. For her, it was a downward spiral, where one malady fed the other. An Alternative Attitude The diet culture seems to entail members “going on the diet” periodically throughout the year, only to “go off” at some point, and having to “go back on” in the future. This perpetuates feelings of “self-criticism” or “self-mastery,” depending on which end of the spectrum the dieter is on, that can potentially lead to disordered eating (Heyes, 2016, p. 140). This behavior affects all aspects of life. If a woman is dis-heartened by the size of her body, she is likely feeling out of control with her career, possibly with her marriage, and her personal relationships. She may even self-sabotage. The research I’ve presented from my study and from others points to the idea that women are more socially acceptable if they communicate discontentment with their bodies and other elements of their lives, rather than indicating a general state of satisfaction. Social norms teach us to “hate” those who are accomplished and happy and to “love” those struggling. Again, awareness is the first step to change. It is also very normal to be angry about the deprivation imposed by allergy-reaction-free diets. Eliminating major food groups means you will not eat like a “normal” person, and you will never be able to participate in routine acts of commensality, key to social interactions. If we are aware that cultural norms perpetuate the attitude of discontentment, we can take steps to change by saying to ourselves: “I accept my body as it is. I love my arms, legs, trunk, face, hair, feet, legs, butt, eyes, nose, mouth, hands – all of me! I am grateful for a functioning body that allows me to hike, bike, walk, run, etc. It is a gift. My body serves my physical needs and allows me to be a functioning individual. I am grateful for the hard-earned knowledge of a diet that makes my body thrive. It’s been a painful process and I’m happy I finally worked it out. I am sincerely grateful for being included in social and family food-related gatherings even though I don’t always participate in the act of commensality, because inclusion is paramount, and sharing time with loved ones is certainly more important than eating with them.” This is a good first step toward self-love and acceptance. Having a positive outlook on one’s body could permeate all other aspects of life. Recap and Moving Forward to Family “Vexing Venues” We have seen in these first few chapters how gluten is a mainstay in cultural practices ranging from wedding and religious rituals, to customs for holidays and celebrations throughout the year. Examples show how avoiding gluten can result in subjugation, scrutiny, and social isolation. Study participants describe how gluten ignorance or sexual biases sustained by medical practitioners prolong a proper diagnosis. We’ve seen how religious practices that require the consumption of gluten, even by those with celiac disease, further the dissonance for those told to avoid it completely. We’ve covered other influencers including the diet industry, which encourages a culture of scrutiny particularly with women who seek to boost their self-esteem, and station in life with a “fit,” attractive body. Sometimes our extreme dietary restrictions cause us to become “disordered” albeit with good reason, leading some professionals to deem us as “dysfunctional” even though we thrive on our dietary choices. Our gluten-centric culture forms ideologies or “truths” that affect our interpersonal relationships with family and friends -- the topic of the next chapter that focuses on how these ideologies play out in familial settings. Invitation to Continue the Conversation Would you like to work through the concepts presented in this book in more detail, perhaps developing a plan of how to address interpersonal and cultural issues caused from living the gluten-free lifestyle? Please visit www.alternativecook.com for information on workshops, or to schedule a consulting session with Dr. Jean Duane. Ideologies in Chapter 4 .divTable{ display: table; width: 100%; } .divTableRow { display: table-row; } .divTableHeading { background-color: #EEE; display: table-header-group; } .divTableCell, .divTableHead { border: 1px solid #999999; display: table-cell; padding: 3px 10px; } .divTableHeading { background-color: #EEE; display: table-header-group; font-weight: bold; } .divTableFoot { background-color: #EEE; display: table-footer-group; font-weight: bold; } .divTableBody { display: table-row-group; } Ideology Description Chapter Dietary Discretion When others are overly interested and judgmental about our dietary choices. 4 Sexist Scrutiny Sexist biases and expectations that may cause erroneous conclusions. 4 Size Surveillance The practice of surveying the size of women's bodies. 4 Living by the Numbers A preoccupation with weight, number of calories consumed, pounds lost, etc. 4 Discussion Question: Do you feel like your body is your enemy or friend? What causes you to feel this way? How have the dietary discretion, sexist scrutiny, size surveillance and living by the numbers ideologies discussed in this chapter impacted your life? Do you feel your body size is scrutinized by your friends/family? Copyright © 2021 by Alternative Cook, LLC References in Chapter 4 AdAge (2011). 90% of WW members are women. Retrieved February 24, 2020 from https://adage.com/article/news/weight-watchers-picks-a-target-men/227155 ANAD. (2020). Eating Disorder Statistics in US. Retrieved February 25, 2020 from https://anad.org/education-and-awareness/about-eating-disorders/eating-disorders-statistics/ Andretta, M. M. (2015). Performing struggles with food in everyday life. Cultural Studies, 15(6), 468-476. doi: 10.1177/1532708615614024 Arroyo, A., & Segrin, C. (2013). Family interactions and disordered eating attitudes: The mediating roles of social competence and psychological distress. Communication Monographs, 80(4) 399–424. doi: 10.1080/03637751.2013.828158 Ata, R. N., Bryant Ludden, A., Lally, M. M. (2006). The effects of gender and family, friend, and media influences on eating behaviors and body image during adolescence. Journal of Youth Adolescence, 26, 1024-1037. doi: 10.1007/s10964-006-9159-x Bedecarre, C. (2005). Tyranny of the carbohydrate: Feminist dietary drama. In L. Heldke, K. Mommer, C. Pineo, and W. Irwin (Eds.), The Atkins diet and philosophy: Chewing the fat with Kant and Nietzsche (pp. 213–229). Chicago, IL: Open Court. Bentley, A. (2005). Men on Atkins: Dieting, Meat and masculinity. In L. Heldke, K. Mommer, C. Pineo, and W. Irwin (Eds.), The Atkins diet and philosophy: Chewing the fat with Kant and Nietzsche (pp. 185-195). Chicago, IL: Open Court. Bordo, S. (1998). Hunger as ideology. Eating Culture 11-35. No doi. Bordo, S. (1993/2003). Unbearable weight: Feminism, western culture, and the body. Oakland, CA: University of California Press. Bordo, S. (1988). Anorexia nervosa: Psychopathy as the crystallization of culture. In I. 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Cole (Eds.), Lesbianism: Affirming Nontraditional Roles (pp. 27-39). Birmingham, NY: The Haworth Press, Inc. Fine, K. (2003). Early diagnosis of gluten sensitivity: Before the villi are gone. Transcript of talk given to the Greater Louisville Celiac Sprue Support Group. Retrieved November 10, 2018 from https://www.enterolab.com/StaticPages/EarlyDiagnosis.aspx Green, P. H. R., & Cellier, C. (2007). Celiac disease. The New England Journal of Medicine, 375(17), 1731-1743. doi: 1533-4406 Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Gudzune, K.A., Doshi, R.S., Mehta, A.K., Chaudhry, Z.W., Jacobs, D.K., Vakil, R.M., Lee, C.J., Bleich, S.N., & Clark, J.M. (2015). Efficacy of commercial weight-loss programs: An updated systematic review. Annals of Internal Medicine, 162(7), 501–512. doi:10.7326/M14-2238 Guptill, A., Copelton, D., & Lual, B. (2013). Food and society: Principles and paradoxes. Cambridge, UK: Polity Press. 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Research Methods in Health Communication: Principles and Application. Oxfordshire, UK: Taylor & Francis. Continue to: Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together Back to: Gluten-Centric Culture: The Commensality Conundrum - Chapter 3 - Where Ideologies Collide In Public Settings

Celiac.com 03/05/2021 - In 2003, I was on a business trip in New Hampshire when my skin blossomed into an itchy, burning rash. During the daylong meeting, I felt it spreading under my clothes. I delivered a presentation to 20 people, while wondering what was happening to me. After the presentation, I went to the bathroom and open my blouse. One look at my reflection in the mirror, and I fainted. At the emergency room, I was confronted with seven different doctors, one at a time, who ask me if I have taken illicit or pharmaceutical drugs, or been exposed to fertilizer or dioxin. They told me that I was having a systemic chemical reaction. They prescribed steroids and antihistamines. They said the rash exposes my body to bacteria and instructed me to buy a thick sweat suit to wear on the plane ride home. The rash itched unbearably for ten days and took six weeks to heal. This was the first of many full-body rashes that erupted unexpectedly over the next few years. Back home, I searched Google, study journal articles. I visited specialists who did colonoscopies, endoscopies, barium enemas, and x-rays. They prescribed histamine blockers and antihistamines. I went to dermatologists who performed skin-prick allergy tests and biopsies, prescribed more drugs and steroid creams. None of the doctors could diagnose the cause of the rash. Meanwhile, the shame around my rash caused me to become antisocial. I hid at home, mostly, but when I did venture out, I wore long sleeves, pants, and gloves to hide my skin even in the heat of summer. My hands were the worst. They swelled with inflammation and itchy sores. One summer afternoon on the light rail, I was too hot to wear gloves. A woman sat across from me, took one look at my hands, and found another seat. The intensity of the skin affliction is an extension of my childhood malaise. I grew up with up with chronic stomachaches and bloating. I thought it was normal to feel sick after eating. Tests revealed that my intestines were anatomically correct albeit twisted, and I was told again and again there is “nothing wrong” with me. I ate a healthy and wholesome diet, following the nutritional advice of the day. Plus, restrictive diets were part of my family’s culture. My mother was always counting calories or on a diet, and after my father had a heart attack, the whole family followed his restrictive heart-healthy regimen. After suffering a series of painful and humiliating rash cycles between 2003 and 2005, my husband found a doctor who promised to find the cause. I endured more scopes down the esophagus and up the rectum orifice, ninety-eight needle sticks on my back, and twenty-six bubble-tests on my forearms. Still, no diagnosis. Finally, after a lifetime of stomach issues, years of painful rashes, and three months of exhaustive testing, the doctor concluded that I was reacting to gluten. My symptoms were conducive to “a rare form of celiac disease called dermatitis herpetiformis,” he said. The first rule of war according to Sun Tzu: “Know your enemy.” Learning that a protein called gluten was wreaking havoc on my body, I was determined to fight it with dietary changes. Gluten wasn’t part of the lexicon at the time and the so-called “gluten craze” was years away. I was left to research on my own. On the Internet, I read, “gluten is a protein found in barley, rye, oats, wheat, and spelt.” Think of the acronym BROWS. But that is just where gluten ubiquity begins. I learned the scores of synonyms for gluten, so I could parse labels on foods, cosmetics, and pharmaceuticals. I discovered that virtually every food I consumed contains hidden gluten. Even with this knowledge, I’d be rash-free for a while, only to have another devastating surprise outbreak. This lasted several years after diagnosis, in spite of vigilantly controlling my diet. Over the years, the rashes have become fewer, as I learned the constraints of my condition. If someone had told me how vigilant I’d have to become, I would have said, “Are you kidding me?” Every bite of food I don’t carefully scrutinize puts me at risk; even the tiniest infraction causes a reaction. I have zero resistance. Explaining my food idiosyncrasies to others is a challenge. My family members support me, though I’ve been accused of “trying to get attention,” and my childhood stomach issues have never been fully acknowledged. I trust almost no one to cook for me. Too many times I have believed loved ones who said that a food is “Jean friendly,” only to be sickened and suffer another rash-cycle. Social politeness isn’t worth the damaging physical ramifications. Food is subsistence for me, now. I limit my diet to the few foods I know will not make me sick. With these strategies, I have learned how to live and thrive with celiac disease, but it has been a long and painful journey, because not eating gluten subjugates me from many social situations. A Social Disease After living with the disease for over ten years, speaking around the country and talking to folks with it too, I realized that the important thing about having celiac disease isn’t answering the ever-important question “what’s for dinner,” but rather, how do I gracefully navigate social scenarios with people I love without alienating them, or compromising my health? I realize that celiac disease and food sensitivities are a social disease (Bacigalupee & Plocha, 2015). We live in a world that revolves around eating gluten-containing foods such as cake to celebrate an achievement, Holy Communion to unite with Christ, or breaking bread at a meal to signify friendships. Those that cannot eat gluten are cut off from these rituals, causing feelings of isolation and seclusion. Constant ridicule of gluten and gluten-avoiders in the media only add to these feelings of alienation. To understand how this affects people in their familial and friend relationships, I surveyed over 600 people and interviewed nearly 70 people nationwide who live with celiac disease or other food sensitivities, asking them to convey their recollected stories. Contentious and sometimes compassionate social interactions take place in what I am calling “vexing venues” such as the home and dinner table, holiday and extended family meals, church, restaurants, the doctor’s office, school, and even the bedroom. Since food appears in virtually every social encounter in life, those with food sensitivities or celiac disease find themselves confronting social norms every day. The attitude of those around us, coupled with our fortitude and self-confidence, or lack thereof affects how we manage these social situations. Sometimes things go well, and we can avoid confrontation and blend into a situation; other times, we are left without anything safe to eat, and people around us who simply do not understand. Positive and negative interactions described by study participants instill a need for a work such as this one to create new levels of awareness, and to be a catalyst for change in the way gluten-centric rituals are viewed. This happens on the individual level first. As described in “The Diagnosis,” and as reported by so many of my study participants, the process required to figure out what is safe to consume is scary, especially when we may react severely to even the smallest amount. But after we figure that out, we have to decide how best to communicate our needs, and live with them in everyday life. It ain’t easy! “None of us are going to follow that diet!” I recently met a woman in the pet shop as I scanned the shelves for gluten free options for my two kitties. The woman noticed I was reading the labels and asked me what I was looking for. I said, “Gluten free cat food, if you can believe it! I can’t clean vomit from the kitties if it contains gluten, so I need to find alternatives.” She then asked me if I had celiac disease. I said, “yes” and she told me about her niece. Her niece had been diagnosed with celiac disease a year ago, but her family did not understand anything about it. The girl was afraid to eat anything, withering away and getting very thin. I asked her if the other family members continued to eat gluten in the household. The lady replied, “Well, yes, of course. None of us are going to follow that diet!” I said, “Does your niece react when she consumes it?” The lady said, “Well, she has lots of physical problems, and she is a very picky eater, but we don’t know what’s ‘in her head’ versus what is real.” Then she described how the family (and she) felt like the girl overreacted, so they forced her to go to a rehabilitation clinic where she was diagnosed with anorexia nervosa. She is now back home, and struggling. This poor girl needs help to understand what she can safely eat, but clearly her biggest issue is negotiating with her family to come to terms about how to keep herself safe while living in that household. The lady described a huge amount of resistance from the girl’s family members, and a lack of compassion or understanding. Until those attitudes are changed—both by the girl and her family—she will not thrive. Why are the family members acting this way toward the girl? It’s because they are entrenched in their beliefs, and the girl’s needs are so far from what they hold as “true,” they cannot comprehend her needs. Also, the family is using “groupthink,” where they reinforce each other’s opinions while inadvertently hurting the girl (Janis, 1972). Though celiac disease and anorexia are serious, ultimately, the family’s firmly held “truths” are the root of that girl’s problems. Once diagnosed with a disease such as celiac disease (and being diagnosed is a feat in itself), the person goes through a process where they realize that long held “truths” about what they can or cannot eat, and how they participate in social situations is completely different than what it was before. Cultivating new “truths” takes time, experimentation, trials, and errors. It means trying out one social tactic or another to see how best to co-exist. It requires strength and courage by the person with celiac disease or food sensitivities, and ideally cooperation and compassion from family and friends. This process is necessary in order for the person with food sensitivities or celiac disease and their close loved ones to adjust. As medical diagnosis processes improve, gluten intolerance is known now to affect many. Gluten Awareness Roughly 95 million Americans—one in every three people—react negatively to gluten (Fine, 2003). Yet, “going gluten free” is considered a fad, ridiculed in contemporary culture, denigrated by culinary luminaries, and even refuted by the Pope! Since being diagnosed with celiac disease in 2005, I have been vaguely aware of the societal pressures that put me at odds with friends and family in virtually every social setting where I disclosed my intention to maintain a gluten-free diet. I wonder, why do I feel this way? Why was this happening so consistently in my life? And, was I alone in this experience? Celiac disease affects one in every 100 people in the United States (celiac.org). Despite these high incidence rates, American physicians often erroneously perceive it as a rarity (Fasano et al., 2003). While three million Americans have celiac disease (Fasano, Sapone, Zevallos, & Schuppan, 2015), another three million have non-celiac gluten sensitivity, which is also an autoimmune response to gluten (Uhde, et al., 2016). And one-third of Americans likely have gluten sensitivities, defined as illness from eating gluten that is not detected in current serological tests (Fasano, et al., 2015; Fine, 2003). The lack of diagnostic testing and awareness leaves many others with non-celiac gluten sensitivity and food sensitivities unaware of the correlation between their symptoms and consumption of gluten-containing foods (Wangen, 2009). Most adults are diagnosed at age fifty or older (Goddard & Gillett, 2006), and non-diagnosis of celiac disease can result in lymphoma (Green & Jabri, 2003). Non-celiac gluten sensitivity affects at least the same amount of people as celiac disease but there are no medical markers to confirm diagnosis at present; however, other autoimmune indicators are positive with the consumption of gluten in tests (Uhde et al., 2016), suggesting that celiac disease is not the only disease correlated with gluten. Pharmaceuticals exist to address symptoms of intestinal discomfort and other physical manifestations, but there is no medical cure for celiac disease or non-celiac gluten sensitivity (though hope on the horizon is discussed in chapter ten). Those with DH can take the drug Dapsone to alleviate the symptoms, but it has serious side effects. Currently, the only treatment option for those with celiac disease is a strict gluten-free diet for life (Fasano & Catssi, 2012). Symptoms of celiac disease and non-celiac gluten sensitivity affect the intestine, including “gas, bloating, diarrhea, nausea, vomiting, fat in the stool, nutrient mal-absorption, and constipation” (Fine, 2003, p. 1), and may manifest as autoimmune issues affecting the entire body, including “dermatitis herpetiformis (itchy rash), diabetes, chronic liver disease, multiple sclerosis, lupus, and osteoporosis” (Fine, 2003, p. 8). Most people don’t correlate what they eat with these physical responses, and reach for an antacid rather than adjusting their diet. Americans spend over two billion dollars a year on antacids (Statista, 2016) when simple alterations in the diet may alleviate symptoms. Some people with celiac disease are asymptomatic. They are the lucky ones who can go to a restaurant and order the featured gluten-free meal and won’t know whether the food was cross-contaminated because they don’t react. This is risky too, because they may be building up antibodies and not know it, and to be honest, their ability to take risks makes those who can’t take risks look overly cautious. Despite it’s commonness, most people don’t know much about gluten sensitivity. Nevertheless, being diagnosed with celiac disease or food sensitivities means having to rethink everything – how we eat, what we eat, where we eat, whom we eat with, and how at-risk we really are. We have to learn for ourselves whether we are asymptomatic, or highly symptomatic. It’s a process of relearning and unlearning, as we navigate our new “truths.” A Rift with Truth Changing a “truth” often creates dissonance for everyone involved. I find it fascinating to associate how deeply held “truths” affect relationships, and when these “truths” are disrupted (such as with a diagnosis that disallows a food found in virtually every bite of “normal fare”) relationships are impacted. What causes this rift with constantly held truths? What factors cause us to form these “given truths?” To answer this, it makes sense to start with defining ideology. Ideology is the kind of word that if you asked nine people what it means, you’ll get nine different answers. (Incidentally, I’ve done this!) Ideologies are common-sense taken-for-granted expressions that influence what is considered “truth” in a given community. There it is – the simple explanation of what “ideology” is—a taken-for-granted truth. Each ideology is informed by a system of ideas that support prevailing social practices and beliefs that are considered natural or normal. However, what is natural and normal for one set of people may not be for others. Consider the global warming controversy. Some consider it “true” that there is no global warming, while others consider it “true” that there is global warming. Those are two ideologies that come with a whole set of sub-beliefs. Convincing someone to change their “given truths” is challenging, and requires compelling evidence. And there is another aspect of ideology – we may know there is global warming, but decide to ignore it, treating it with willful ignorance, because as Al Gore points out, it is a very inconvenient truth. It is no fun to alter our fast-paced, technologically driven lifestyles to accommodate the planet’s needs. It is easier to rationalize making a larger carbon footprint when we have the chance to travel across the world for a tropical vacation, or drive rather than use public transportation. Similarly, it is complex to alter a person’s diet to completely omit gluten. It is far easier to conform to norms than to insist on eating different foods than everyone else eats. Ideologies are determined by cultural influences such as religious beliefs, etiquette practices, media perspectives, political views, “scientific” evidence (put in quotes, because outcomes can be manipulated for biases), and the cultivation of “truth” through storytelling. Storytelling is how we determine who we are, and what we believe. Our “story” is influenced by our experiences, what we see, read, hear, etc. as well as what those around us see, read, and believe. Collectively, we form what we consider “truths” or ideologies. For the purpose of this book, “given truths” and “ideology” are the same, but they vary from person to person, and culture to culture. We live with our taken for granted “truths” very comfortably, thank you very much, until they are rocked with a new “truth” that has to be evaluated and incorporated. A perfect example of this is when a person is diagnosed with celiac disease and has to avoid every molecule of gluten in order to thrive in life. Everyone else has to alter his or her “truths” to accommodate this new “truth.” Often people don’t want to alter their comfortable “truth,” causing resistance. Sometimes the notion of a severely restrictive diet is so farfetched, people “refuse to believe it” causing head butting and strife. I recently “butted” against an ideology with my housekeeper, who had been with me for years. I thought she understood my gluten sensitivities, because she has been in my life as I wrote cookbooks and renovated my house to make it safe and gluten free. One day she arrived at my door munching from a cylinder of crackers. I said, “Oh, I’m sorry, but you can’t eat those in here. Before you come in, you’ll need to wash your hands. Please wait there and I’ll get you a damp towel.” All ended well, it seemed. But then months later, I found her eating chocolate chip cookies in my gluten-free kitchen. I said, more forcefully, “You can’t eat those in here! Please put those in this plastic bag, and let’s try to clean off whatever you have touched.” To my surprise she responded, “You have insulted my food again! You did it before when I was eating crackers. I’m hungry and need to eat. I’ll eat whatever I want whenever I want to.” When this happened, I didn’t say to myself, “Oh we are operating from different ideologies.” Nope, after she rejected the gluten-free food I offered instead of her cookies, I just got really mad and fired her. In fact, I fumed about it when I had to clean up (and had a reaction as a result). I still fume every week when I clean my house myself now. But when I think about it, I realize that she was operating from a different set of “truths.” Her “truth” was that she was working hard and was entitled to eat when she was hungry. The idea of a food allergy or intolerance was alien to her. Somehow she missed noticing the years I was sick when she came to clean before I was diagnosed, or the other years I worked from home writing cookbooks. Though I thought I had explained it to her many times, I think the idea of being “allergic” to any food was a concept she simply didn’t understand. From my ideological perspective, after forsaking nearly every food I used to dearly love, eating an extremely restrictive diet, and living this lifestyle, I was absolutely confronted with her attitude and lack of respect or compassion for my plight. We were operating from two polarized ideologies. I am sure she felt as “right” with her beliefs as I did with mine. Both of us were reinforced by prevailing “truths” we elected to hold as our own. Members of the dominant group reinforce their own values and tend not to question their ideological beliefs. When individuals outside of the dominant group question the ideology, they are often subjected to scrutiny, judgment, and disciplining tactics, as the dominant group seeks to protect existing ideology. Major life changes, like illness, can displace a person’s position from the dominant group to an outsider group. For example, when given news of a life-altering illness requiring drastic dietary alterations, a person may reexamine firmly held truths around food and health. Ideological truths that once represented simple proclamations to live by (such as give us each day our daily bread, for example), suddenly contradict reality. The ill person reexamines his or her ideologies around social and familial situations involving food, forced to defend them with everyone else who holds a different set of beliefs. The Power of Ideology Expanding the simple definition of ideology as taken-for-granted truth, let’s examine it from different perspectives. An ideology is described as a notion that drives behavior, but that behavior can be altered when a different belief takes hold (Burke, 1969). My housekeeper’s reaction depicted her deep-seated ideological belief that she was entitled to eat whatever, wherever, and whenever she wanted, and that allergies to food were unthinkable. Whereas, I felt like after all I had gone through to learn about my disease, and the sacrifices and expenses that I had endured to thrive, she was disrespecting and disrupting my ideologies (in the sacredness of my home). There was no intersection between what she believed and what I held fast. Unified, or common beliefs would have helped us to understand each other’s perspective. My housekeeper and I shared no “interconnected beliefs” on this topic (Black, 1970, p. 70) and because of that we reached a sudden impasse and parted ways. I truly regret this. She was with me for years. I wish we could have a heart-to-heart about this, where I could say my point of view and she could express hers. It would be wonderful for us to show each other compassion and understanding, but it hasn’t happened. She “dug in” with her truth, and I with mine. Ideologies are seldom an individual’s original thought, but rather a thought driven by outside influencers (McLellan, 1986). Ideologies are common sense “truths” (McKerrow, 1989), and may be rooted in personal, self-serving interests (Eagleton, 1991). For example, a spouse who feels put upon by his/her partner’s gluten-free needs may repeat the ideological “truth,” a little won’t hurt you, in order to avoid the burden of extreme safety practices in the home kitchen. Operating under this ideology, the cook is excused from the tedium of reading every label to identify gluten-containing ingredients. The partner eating the food becomes a victim of this ideology when suffering the consequential reaction. I have a friend who continues to make gluten-containing foods in her kitchen even though her husband constantly complains of what she refers to as “his little rash.” He was diagnosed with dermatitis herpetiformus, a form of celiac disease that manifests on the skin a few years ago, but she refuses to believe he is as intolerant as the doctor told him he was. She thinks a little won’t hurt, and even though he has that “little rash” all the time, she continues to bake and eat gluten. He is a victim of her ideology. Faced with the challenges of a gluten-free lifestyle, some couples forego eating together. Study respondent, William (#60) describes his sadness that he and his wife no longer share meals. She doubts his response to his disease, judging his restrictive dietary choices are far too extreme. He reports, “She goes out to eat most of the time, and I make safe food for myself at home.” His wife refuses to cook or consume gluten-free meals, preferring to eat at restaurants with her friends. William feels isolated and distanced from his wife because of his extreme sensitivity to gluten, unable to participate in her social events. However, he remains steadfast with his resolve to avoid cross-contamination to protect his health. Another respondent reports feeling mocked with his dietary choices. When eating his special gluten-free foods at the dinner table, Bert (#63) says, “My daughter rolls her eyes and looks at my wife. They both snicker.” The daughter and wife are showing reluctant tolerance and gluten-doubt ideologies to his dietary choices. These ideologies will be elaborated in Chapter 2. Both examples from William and Bert show how living under flawed ideologies can disrupt relationships. Ideologies are also enforced by the power of the elite class, including political, economic, and even military entities (McGee, 1980). The government perpetuates ideologies with dietary standards and corporations create physical ideals that sway the public through advertisements. Media influencers such as television shows targeting food sensitivities people, quotes from celebrities about the gluten-free diet, and mocking messages such as those the in satirical comics gathered in this text collectively influence the behaviors and ways of popular thinking. Utilizing the definition of ideology as a “shared representation of social groups,” ideologies evolve from cultural societal foundations such as the church, media outlets, weight-loss enterprises – from virtually every public venue (Van Dijk’s, 2006, p. 115). Stated differently, ideologies are mandates prescribed by a higher power such as religion, from an authority such as science, or from a powerful government or corporate entity. Ideology can comprise a constellation of beliefs that shape identities and realities (Mumby, 2015). Those whose actions repudiate established norms are punished, often with public ridicule. https://sfd.celiac.com/uploads/monthly_2021_02/bizzaro_comic_jean_duane_1.webp.5ff610ebc20f358715ef3b6db11b4270.webp Figure 1.1 – Gluten Sensitive (Licensed with permission from Comics Kingdom (Bizarro).) Social commentary in the media often ridicules those who avoid gluten. Humor can be a harmful vehicle such as the comic in Figure 1.1. The woman is described to be overly sensitive, not to eating gluten, but having her feelings hurt when gluten is mentioned. Though admittedly funny, this is an example of how mockery can infiltrate the public’s opinion when someone request a safe, gluten-free meal, and how women are overly sensitive to diet. The satire comics presented throughout this book illustrate an ideological hostility to food sensitivities and celiac disease, by way of denigrating barbs that make light of the gluten-free diet, undermining the importance of it, and reinforcing negative and unkind behaviors toward those with celiac disease. Laughing at a gluten-mocking comic implies agreement with the underpinning ideology. Freud (1905, p. 60) points out that wit is a “weapon of attack” to make those being disparaged feel “inferior and powerless.” If we fall outside of the norm with our behavior or beliefs, we are often ridiculed until we fall back in line. The comics illustrate how mockery urges conformity. Those in the “powerful” (non-celiac disease) group see the comics and laugh, whereas even though those with food sensitivities or celiac disease find it humorous, we also may view it as a form of “oppression” and a worrisome jab. Comics reinforce the “groupthink” that happens in families causing anyone who falls out of line to become the ridiculed victim, ousted from the group. Humans coalesce in groups with common beliefs. “Man is by nature a political animal with an innate tendency to form into groups” (Aristotle). Groupthink is a process described originally by Janis (1972) where those empowered in a group share a common belief, whether it is true or not, and then put pressure on those who do not comply with those truths. Those not going along with the group’s ways of thinking are censored, ignored, or ultimately culled unless they comply. Those who share the group’s opinion are unified members of the group. Groupthink evolves through the process of familial storytelling where “truths” are formed and solidified, sometimes becoming self-censored, and self-serving (Janis, 1972). Ideologies are assimilated through conversation that conveys a story that intertwines cultural influences with long-held beliefs (Fisher, 1989). Narrators balance truth with motivations in a cohesive story with significant meaning (White, 1980) and seek reinforcement or agreement from outside culture, religion, and political influential forces (McAdams, Reynolds, Lewis, Patten, & Bowman, 2011). This story telling process to formulate “truths” is integral to family traditions, making meaning of shared life, “doing family” (Langellier & Peterson, 2018, p. 1), and teaching family values (Koenig Kellas & Kranstuber Horstman, 2015). It is in our initial home where we learn fundamentals for what and how to eat, how to cook, how to participate in food-related rituals), as well as gender roles and power structure biases around food (de Certeau, et al., 1998; Pecchoni, Overton, & Thompson, 2008). Groupthink is a way of encouraging belonging to the group or family and creates power structures of “us” and “them.” Divorcing the Family Originally published as an excerpt from this book on 02/13/2020 in The Journal of Gluten Sensitivity I made a rare visit to a cousin a year or so after I was diagnosed with celiac disease. As the youngest child in a large extended family, my cousin was closer to my mother’s age than mine. He took my mother and me on a beautiful ride around Kansas City. I sat in the back seat as they reminisced about their younger lives while passing the places where they experienced them. It came time for lunch and he wanted to take us to a favorite BBQ place in the heart of Independence, MO. I hesitated at his suggestion, and he said, “You aren’t one of those vegematerians, are you?” The coy word he used, and his tone suggested his disapproval of anything out of the ordinary. (In fact, at that time I was a gluten-free vegan!) I said, “I’ll find something.” During lunch, I picked at French fries, pretty sure they were cooked in a dedicated fryer. My mother and cousin exuberantly scarfed the BBQ. My cousin told us about another cousin I hadn’t seen in over 40 years that I apparently look like and reminded him of. He said, “Cousin Sandra is weird. She used to bring her own food to our family dinners.” He was referring to a time, fifty years ago. Back then, members of the extended family met at my grandmother’s house every Sunday to share their views on politics and happenings in the world. It was a close-knit family. Dinner consisted of the main dish (usually pressure cooked ham, green beans, onions, potatoes, bread, and cake for dessert) made by my grandmother, and side dishes brought by my aunts. I was no older than five, and have hazy recollections of these dinners, other than the warmth of family and the familiar smells of home cooking. To be included meant to eat, drink, smoke (it seemed they all did it back then) and converse around that big dining room table. I can imagine that someone daring to bring their own food, spreading it out on their placemat and eating it, while all those other dishes were being passed, might not go over well. As I reflect on my cousin Sandra, it occurs to me that she may have had celiac disease. That was in the early 1960s when it was virtually unheard of in the United States. Why else would she have had to bring her own food to those cherished dinners? A diagnosis prohibiting food of any kind would have been alien and unfathomable to anyone in my family. These are people who lived through the depression after all, where popcorn was the fare for breakfast, lunch, and dinner, if they even had that! Waving away any food, especially foods made by loving hands would have been viewed as an arrogant rejection of their abundance and love. Perhaps she had a mental illness that made her “weird,” or maybe she made unreasonable demands on the family, but I think the most probable reason is that she was just trying to protect her health. Considering how my cousin put it, she was weird only because she brought her own food to the family dinners. In his eyes, she became the “weird one,” ousted by the family because of her audacity to bring her own food to the dinner party. Family lore according to my mother goes on to say that: “She ultimately divorced our family.” Can you do that? It’s a sad story, isn’t it? But I think about it from time to time. I wondered if Sandra was so maligned because the family decided her special needs were so odd that they ostracized her, and she ultimately rejected them. Further, they unified at her expense. Does what happened to her mean that anyone in the younger generation who may have inherited the same disease runs the risk of being shunned? I’d like to think we’re more enlightened now, but thankfully, I’ll never know. I do recall that my mother shushed family when they talked about their illnesses around me, fearing I’d imitate them, I suppose. Her attitude was that you made yourself well, or you made yourself sick, and I think she was careful to protect me from hearing about other people’s illnesses so I didn’t get the idea that I may have them too. She had a Pollyannaish perspective, and thought everyone in her family was perfect, no matter what. That made it very challenging for me to convince her that something wasn’t perfect with me when I was finally diagnosed with celiac disease. In fact, I think she thought I brought it on myself. [I was in my mid-forties when properly diagnosed.] These were her “truths” and likely the “truths” of the collective family. Most of those people around that dinner table fifty years ago have passed on, I imagine happily gathered “around that table in the sky.” In Sandra’s case, family members didn’t understand her dietary restrictions, agreeing she was “weird” and rejecting her for her special needs. She was stereotyped as a prima donna. Cumulative family lore develops through repeated acts of storytelling formulating familial ideologies that perpetuate collective “truths.” These stories form the group’s opinion on given topics. Sometimes these “truths” evolve from just participating in the same activities together, and developing a way of doing things that everyone agrees on, as described with the Sunday dinners above. In their lively discussions, my extended family debated “truths” about politics, news stories, and current events. Similarly, they had a collective opinion about how each other should act while sitting around that table. When someone altered the established norms, like Cousin Sandra, she disturbed rituals, and rocked the family’s agreed-upon “truths.” Her rejection of the foods required the family to rewrite their collective story. This is rarely done on a conscious level, but rather it is done as groupthink. The unspoken “truth” was: you do what we do, eat what we eat, and even smoke what we smoke in order to fit in. Buck that system, and suffer the consequences. In Cousin Sandra’s case, the group determined her choices were a rejection of the others. She refuted the established but unspoken ideologies. As a result, she was rejected and mocked. From their view, if she didn’t participate, she self-selected alienation. Before rejecting her, they likely cajoled her to participate, suggesting a little won’t hurt you, or come on, just a bite. In fact, I can “see” my grandmother holding up a fork with a bite on it, saying, wouldn’t you like just a taste? These urgings are attempts to include rather than exclude. What they really are saying is: you don’t want to be rejected by the family by refusing our norms… come on, just have a little so you can stay a part of our group. That is actually a compassionate message. But we don’t “hear” it that way when we’ve deemed the food being offered to us as poison, and when we feel our needs are not being honored or understood. I don’t think anyone in my family ever intended to bully Cousin Sandra out of the group, It just happened because of their rigid policies on how we ought to act perpetuating the ideology: Think like us, and belong. Sandra’s response could have been, “I love all of you, but not enough to eat your food.” I doubt anyone ever talked openly about it because they lacked the tools and skill to broach a constructive conversation. Liza (#68) reflected on when she first sat down to her future mother-in-law’s table: My fiancé and I traveled to my future in-law’s home so we could meet each other. I sat down to the dinner table. There were foods I was unfamiliar with – a whole fish cooked complete with the eyes, some pickles that smelled odd to me, some ultra sweet cakes, cold cuts, cheese, and boiled eggs. Though I was hungry, all of the foods were unappetizing to me. Really, I became nauseated and I knew that if I didn’t eat the foods my mother-in-law prepared for that first meal, she would feel that I was rejecting her. I forced myself to eat it, but still get chills when I think about that fish looking at me from the platter. Liza conveyed that she wanted to make a good impression on her future parents-in-law, and she knew that not eating the food on the bountiful table was not acceptable. She wanted to fit in, but the food was unappetizing to her. She said that in the future she offered to bring a dish she liked to share at the family meals. Food is so integral to our social existence that forsaking the foods made by loving hands implies a repudiation of those hands, and the people who share it. Breaking bread around the dinner table is a way that people bond. Not taking that bread, or accepting that cup of tea, or eating what everyone else eats, is viewed as a silent form of rejection. This is why having gluten sensitivities causes so many social issues, and is one of the topics in my book. People I surveyed and interviewed told me many stories like the one above. As I reflected on what people said, I realized that the heart of the problem is that we do not have language to talk about these things. If we could say, “I’m not rejecting any of you by not sharing your food. I have a disease that prevents me from eating it, and I still want to sit at this table and be a part of the conversation.” We just don’t seem to be able to have these candid conversations. But by identifying these flawed social norms, we can work to change them, so people rejecting food served around the extended family dinner table can be included, loved, and un-judged for their choices. The first step is to identify these long held “truths,” put words to them, and discuss them openly, rather than living with unstated dysfunctional consensual rules that cause people who defy them to be alienated. Ideologies in Culture In this book, I explore how dominant beliefs drive behavior patterns of commensality (the act of socially sharing food). Ideologies are complex, with many activated at the same time around behavior, such as rules of etiquette, and acceptable religious practices. When on the powerful side of the ideology, life is natural and normal and social interactions are smooth. However, when on the oppressive end, a person can be subject to scrutiny or even punishment until they conform to expectations. This is particularly true of practices and beliefs surrounding food. Traditional foods and preparation practices are disrupted when dietary restrictions are expressed, deviating from expectations and requiring adjustments in beliefs as new narratives emerge (Bochner, et al., 1997). Food is often the focal point for ritual, ceremony, and everyday life. When considering ideologies concerning food practices, it all comes down to expectations. These maxims drive behavior patterns and set social standards that govern acceptable social behavior, rituals for traditional ceremonies, and practices to assure health and welfare. Dogma related to gluten or gluten-containing foods is deeply coded in ideology such as you are what you eat and gluten-free is a fad. This means they are a system of ideas and principles that are taken as natural and normal, implemented without thought. These “truths” put individuals on the defense when communicating the severity of their food allergies or autoimmune reactions, because they simply don’t serve us anymore. Ideologies diminish the seriousness of food sensitivities in nearly every social setting. Ideological Conundrums Therein lies the rub. People who are diagnosed with celiac disease or gluten sensitivities are faced with the need to redefine “truth,” as they learn about the extent of their sensitivities and reactions to various foods. These new “truths” must be teased out and tested by the individual with celiac disease or food sensitivities until firmly believed, and then communicated and hopefully accepted by his or her peers. Cousin Sandra’s attempt and reaction illustrates how this testing can play out, for better or worse. Participants in the interviews discussed this book share their experiences while trying out new “truths” in various venues. Many shared that it was a tricky proposition, requiring them to learn more about themselves, how they handle conflict, and how they co-exist with loved ones. If a person is diagnosed with diabetes, they face having to make diet and lifestyle changes, but they don’t get mocked and ridiculed by society. People with diabetes are often treated with more compassion and understanding. Similar to celiac disease, diabetes is a genetic disability that requires constant dietary vigilance and daily management. An Internet search on “diabetes fad” versus “gluten fad” reveals that diabetes is not considered a fad and is taken significantly more seriously than celiac disease. Whereas the Internet search on “gluten fad” yielded multiple pages of hits. Perhaps diabetes is not considered a fad because doctors regularly test for it as part of an annual check-up, and because approximately 22 million Americans have it (Statistica 2016b), compared to only one million people diagnosed with celiac disease (Fasano, et al., 2003). Those avoiding gluten face cultural, gluten-centric forces that make “being gluten free” very challenging. As truth is redefined, the individual with celiac disease or food sensitivities undergoes an identity transformation. The book examines three themes: ideological drivers related to food and gluten, familial adaptations or non-adaptive responses, and identity transformation with disease. First, we’ll uncover what causes ideologies to form by examining governmental regulations, religious beliefs, etiquette practices, media, and advertising to see how they define our gluten centric society. Next we’ll look at how ideologies affect family and friend social interactions. One chapter attempts to “rewrite” the script with our newly acquired knowledge of dysfunctional ideologies. We’ll check in with individuals from the study to learn how they handle these newly adapted “truths” and how they shifted their thought process to positively transform their lives. Finally, I’ll share the wealth of information gleaned from the interviews, discuss the American Disabilities Act (ADA), and end with “where do we go from here.” In future chapters, I’ll explain the notion of ideologies in more detail, but for now, please understand that this “shift” in thinking redefining long-established “truths” is a fundamental transition for individuals determined to remain gluten-free. The next chapters define and discuss ideological influencers which I term: reluctant tolerance, gluten-doubt, able-body bias, “sorta scientific,” I-Know-Best, diet discretion, exclusionary etiquette, absence of agency, sacred bread, dietary discretion, sexist scrutiny, size surveillance, living by the numbers, and yours, not mine as they relate to food and gluten referring to taken-for-granted “truths” that inform guide daily life when interacting in rituals with others. These ideologies stand between living with celiac disease with grace versus living with strife and angst. Identifying them and offering language to define them is the first step to navigating the gluten-free lifestyle gracefully. Discussion Questions for Forum How do your “truths” about gluten sensitivity differ from the “truths” of your family and friends? How do those differences in “truth” affect your social encounters with your family and friends? How do you convince your family and friends about your newly discovered “truths” as you navigate the gluten-free lifestyle? Copyright © 2021 by Alternative Cook, LLC Continue To: Gluten-Centric Culture: The Commensality Conundrum - Chapter 2 - Ideologies In Our Gluten-Centric Society ___ References in Chapter 1 Bacigalupe, G., & Plocha, A. (2015). Celiac is a social disease: Family challenges and strategies. Families Systems & Health, 33(1), 46-54. doi: 10.1037/fsh0000099 Black, E. (1970). The second persona. In C. R. Burchardt (Ed.), Readings in Rhetorical Criticism (pp. 70-77). State College, PA: Strata Publishing, Inc. Bochner, A. P., Ellis, C., & Tillmann-Healy, L. M. (1997). Relationships as stories. In S. W. Duck (Ed.), Handbook of Personal Relationships: Theory, research, and Interventions (2nd ed., pp. 307–324). Chichester, England: John Wiley & Sons. Brown, B. (2013). Brené Brown’s presentation caught Oprah’s attention. The same skills can work for you. Retrieved July 23, 2018 from https://www.forbes.com/sites/carminegallo/2013/10/11/brene-browns-presentation-caught-oprahs-attention-the-same-skills-can-work-for-you/#604ac79053c1 Burke, K. (1969). Rhetoric of motives. Berkeley, CA: University of California Press. Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry & research design (4th ed.). Thousand Oaks, CA: Sage Publications, Inc. de Certeau, M., Giard, L., & Mayol, P. (1998). The practice of everyday life, Vol. 2. Minneapolis, MN: University of Minnesota Press. Eagleton, T. (1991). Ideology: An introduction. London, England: Verso. Fasano, A., & Catassi, C. (2012). Celiac disease. The New England Journal of Medicine, 267(25), 2419-2426. doi: 10.1056/NEJMcp1113994 Fasano, A., Berti, I., Gerarduzzi, T., Not, T., Colletti, R., Drago, S., Elitsur, Y., Green, P., Guandalini. S., Hill, I., Pietzak, M., Ventura, A., Thorpe, M., Kryszak, D., Fornaroli, F., Wasserman, S., Murray, J., & Horvath, M. (2003). Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Arch Intern Med, 163, 286-292. doi: 10.1001/archinte.163.3.286 Fasano, A., Sapone, A., Zevallos, V., & Schuppan, D. (2015). Nonceliac gluten and wheat sensitivity. Gastroenterology, 148, 1195-1204. doi: 10.1053/j.gastro.2014.12049 Fine, K. (2003). Early diagnosis of gluten sensitivity: Before the villi are gone. Transcript of talk given to the Greater Louisville Celiac Sprue Support Group. Retrieved November 10, 2018 from https://www.enterolab.com/StaticPages/EarlyDiagnosis.aspx Fisher, W. R. (1989). Human communication as narration: toward a philosophy of reason, value, and action. Columbia, SC: University of South Carolina Press. Freud, S. (1905/2009). Wit and its relation to the unconscious. Overland Park, KS: Digireads.com, Neeland Media, LLC. Goddard, C., & Gillett, H., (2006). Complications of coeliac disease: Are all patients at risk? Postgrad Med Journal, 82, 705-712. doi: 10.1136/pgmi.2006.048876 Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Janis, I. L. (1982). Groupthink. Boston, MA: Houghton Mifflin. Koenig Kellas, J., & Kranstuber Horstman, H. (2015). Communicated narrative sense making: understanding family narratives, storytelling, and the construction of meaning through a communicative lens. In L. M. Turner & R. West (Eds.), Sage Handbook of Family Communication (pp. 76–90). Thousand Oaks, CA: Sage Publications, Inc. Langellier, K. M., & Peterson, E. E. (2018). Narrative performance theory: making stories, doing family. In D. O. Braithwaite, E. A. Suter, and K. Floyd (Eds.), Engaging Theories in Family Communication Multiple Perspectives (pp. 43-56). New York, NY: Routledge. McAdams, D., Reynolds, J., Lewis, M., Patten, A., & Bowman, P. (2001). When bad things turn good and good things turn bad: Sequences of redemption and contamination in life narrative and their relation to psychosocial adaptation in midlife adults and in students. PSPB, 27(3), 474-485. doi: 10.1177.0146167201274008 McGee. M. C. (1980). The ideograph: A link between rhetoric and ideology. In C. R. Burgchardt (Ed.), Readings in Rhetorical Criticism (pp. 498-513). State College, PA: Strata Publishing, Inc. McKerrow, R. E. (1989). Critical rhetoric: Theory and praxis. In C. R. Burgchardt (Ed.), Readings in Rhetorical Criticism (pp. 96- 118). State College, PA: Strata Publishing, Inc. McLellan, D. (1986). Ideology. Minneapolis, MN: University of Minnesota Press. Mumby, D. K. (2015). Organizational communication: Critical approaches. In W. Donsbach (Ed.), The concise encyclopedia of communication (pp. 429–431). Chichester, West Sussex: Wiley & Sons, Inc. Pecchoni, L., Overton, B., & Thompson, T. (2008). Families communicating about health. In L. M. Turner & R. West (Eds.), Sage Handbook of Family Communication (pp. 306-319). Thousand Oaks, CA: Sage Publications, Inc. Statista (2018b). The rise of the gluten free diet: Percent of Americans on gluten-free diet with/without celiac disease. Retrieved from https://www-statista-com.du.idm.oclc.org/chart/7639/the-rise-of-the-gluten-free-diet/. Statista, (2016) Sales of the leading brands of antacid tablets in the United States in 2016. Retrieved from https://www.statista.com/statistics/737978/us-sales-of-antacid-tablet-brands/ Uhde, M., Ajamian, M., Caio. G., DeGiorgio, R., Indart, A., Green, P., Verna, E. Volta, U., & Alaedini, A. (2016). Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease. Gut, 65, 1930-1937. doi: 10.1136/gutjrl-2016-211964 Van Dijk, T.A. (2006). Ideology and discourse analysis. Journal of Political Ideologies 11(2), 115–140, doi:10.1080/13569310600687908 Wangen, S. (2009). Healthier without wheat. Seattle, WA: Innate Health Publishing. White, H. (1980). The value of narrativity in the representation of reality. Critical Inquiry 7(1), 5-27. No doi. A Note on the Participants Throughout the document, names of interview participants are noted with pseudo-names and their corresponding respondent number. Go to Gluten-Centric Culture: The Commensality Conundrum - Chapter 2 - Ideologies In Our Gluten-Centric Society

Celiac.com 02/07/2020 - Gluten sensitivity during pregnancy can profoundly impact fetal brain development. Gluten is a protein found in wheat, rye, and barley. Many people who have a gluten intolerance may also have other food sensitivities to common antigens like corn, soy, dairy, and sugar. Many times, without a histamine response like hives, people can be blissfully unaware of their food sensitivity. Studies have shown gluten sensitivity destroys brain and nervous tissue more than any other tissue in the body, and is linked to a number of other neurological disorders. (Read my blog Gluten Intolerance Testing for more information about this.) Eating Gluten During Pregnancy May Potentially Put Your Child At Risk Beginning before birth, the left and right hemispheres of the brain develop in stages according to a very sophisticated schedule. Each hemisphere depends on the other to meet its developmental goals within a precise window of time. While in-utero and in early childhood, viruses, infection, and inflammation (such as that from a gluten sensitivity), can throw a wrench in this intricate timing and hinder proper brain development. This sets the stage for a wide range of neurological disorders, attention-deficit/hyperactivity disorder (ADHD), autism, Tourette's syndrome, depression, anxiety, and other childhood brain disorders. Childhood mental disorders now affect one in five children, and the rates are increasing. Wheat Can impact Brain Function There are at least 13 different ways I know of that a gluten sensitivity can impact the brain. Let's look at a couple of the big ones. One mechanism is that there can be elevated antibodies to wheat and the cerebellum and GAD-65. Your cerebellum controls your muscle movements. After years of your body attacking this brain tissue, the brain may shrink. People with GAD-65 antibodies indicate a high trigger for anxiety and ADHD. Another common mechanism is hypoperfusion, a lack of blood flow going to the brain. 73% of people with a sensitivity to wheat have hypoperfusion. Just like your cells need hydration, your brain needs to be saturated. So many people go undiagnosed with a gluten-related disorder for years. Imagine what we are doing to our children (and ourselves) when we eat that bowl of cereal or toast before school or work. We are not able to function optimally. This is why "brain fog" is the most common symptom for people with a sensitivity to wheat. In 2006, a study looked at 132 people with symptoms of ADHD who had a wheat sensitivity. When they put them on a gluten-free diet, the researchers reported markedly significant improvement in all behavioral markers within six months. Gluten sensitivity may also more than double your child's risk of developing schizophrenia later in life. The first study to reveal food sensitivity was linked to a greater risk for psychosis, autism and other brain disorders in the child. Researchers looked at blood samples of nearly 800 individuals born in Sweden between 1975 and 1985. What did they find? People with schizophrenia had high levels of gluten antibodies in their blood at birth - meaning a gluten sensitivity was passed from mother to child. You Might Have an Undiagnosed Gluten Sensitivity Awareness is growing as rates of celiac disease, an intestinal autoimmune disease caused by gluten, have quadrupled in the last 50 years. The numbers could be much higher. In fact, it's estimated that 95 percent of those with celiac disease go undiagnosed. Researchers also estimate the numbers of people with gluten sensitivity — a non-celiac inflammatory reaction to gluten — range from 10 to 30 percent of the population. During Pregnancy, Mom's Gluten Sensitivity May Affect Her Baby's Brain If you look at the current explosion in inflammatory disorders today, the rise of these brain-based disorders is less of a mystery. Immune-activated mothers are giving birth to immune-activated babies. If you can, don't wait until pregnancy to look into food sensitivities. Every woman needs to consider a screen for gluten sensitivity. Look for anti-gliadin antibodies and, if that test comes back positive, go on a gluten-free diet. We don't know at which point during pregnancy a mother's gluten sensitivity impacts the fetal brain, but we do know the baby's brain and nervous system begin developing in the first trimester. Although the association between a mother's gluten sensitivity and the baby's increased risk of psychosis as an adult is not yet fully understood, it makes sense to err on the side of caution. "During My Pregnancy, I Didn't Get Nauseous. I Must Not Have Gluten Sensitivity, Right?" Not Necessarily. A lack of gut symptoms doesn't mean you're in the clear. Everyone reacts differently to gluten sensitivity. One person can have chronic skin rashes, another may have joint pain, and a third brain fog. In fact, research suggests the majority of people with gluten sensitivity have no gastrointestinal symptoms whatsoever. For every person with gut symptoms caused by gluten, there will be eight who have none, despite there being a gluten sensitivity present. An undiagnosed gluten sensitivity during pregnancy is in no way a guarantee that your child will develop schizophrenia or other brain disorders either. However, when an expectant mother produces autoimmune antibodies to brain tissue, 86% of their children are on the autism spectrum. If mom has an autoimmune mechanism going on inside her body, it can affect the baby. One of the most common food sensitivities associated with neurologic problems is wheat. Only a fraction of people who have a problem with wheat have celiac. Many more have gluten sensitivity. Many women —and men—may be better off on a gluten-free diet even though they do not have celiac disease. How do you reduce antibodies? First, screen for antibodies against the brain. Two great tools for screening are the Cyrex Array #5 and the Neural Zoomer. If you are producing antibodies, you need to eliminate the trigger(s). The goal is to stop the autoimmune cascade, particularly during pregnancy when the fetus is developing its entire body and establishing its own immune system that will set him or her up for life. Bacterial Colonies Change in the Vaginal Tract During Pregnancy In the last trimester of pregnancy, the bacterial colonies in the vaginal tract change completely to the point that there's a very high count of prevotella [bacteria]. Most of the time, there are practically no prevotella that are measurable in the vaginal tract at all. The change in the last trimester occurs because the prevotella is the substance that coats the baby as it comes down the birth canal. Prevotella migrates through the baby's nasal cavity and its mouth and goes down to turn on the genes in the gastrointestinal (GI) tract. These genes say, "Okay, this is the mammal that is going to start feeding you. Here are the codes for the protein that's about to come to you for food." The baby's digestive tract then starts turning on the digestive enzyme production capability for the specific proteins that are encoded in the prevotella bacteria. My Personal Story When we were first married, my ex-wife and I, despite all efforts, could not get pregnant. I was an intern at the time, and I called the seven most famous doctors I'd ever heard of, holistic doctors, and asked, "What can we do?" Because I was an intern, they asked, "Do you know this?" "Do you know that?" I'd say, "No." And they would respond: "Learn." So I put a program together, and we were pregnant in six weeks. A lot of people know that this began my study of gluten and the many effects it has on the body. Since then, I've helped hundreds of couples with infertility, recurrent miscarriages, and hormonal imbalances. There's not much in medicine that's all or every, but this is an every. What we learned early was that every person with hormone-related symptoms, whether it was infertility, miscarriages, estrogen dominance, testosterone deficiency, all of them, when tested properly, had a sensitivity to foods that they were eating — foods that they did not know were making them sick. When you eat a food that you're sensitive to, it triggers inflammation in the body. The immune system responds to try to protect you from something it considers an invader, and it creates an inflammatory reaction. I have said this so many times over the years: "Ms. Patient. If you pull at a chain, the chain always breaks at the weakest link. So, the first thing to do is to learn what's pulling on the chain." We found out something amazing... Food Sensitivities Were a Component Every Time Often there were more, but it was an important component. I found that the most frequent food sensitivity was wheat. So I started reading the literature on wheat way back in 1980. Our daughter was also born in 1980, and I started talking about it shortly thereafter because the studies were blowing me away. By 2004, I was lecturing professionally onstage about wheat sensitivities with or without celiac disease. That progressed and progressed until 2008, when a nutritional company called Metagenics sponsored me to go around the world. I went to 26 different cities and gave full eight-hour presentations on wheat sensitivity. The presentation dropped everybody's jaw. No one had ever seen these studies about different types of spondyloarthropathy, rheumatoid arthritis, psoriasis, multiple sclerosis, attention deficit disorder, autism, or Alzheimer's and how it would benefit some of those people just by getting off of wheat. They started to get better, sometimes dramatically, but often to some degree. In 2009, I did the same 26 cities for a full eight-hour presentation on the development of autoimmunity. What triggers the development of autoimmunity? And what do you do to address autoimmunity? It was infertility, successfully addressed by looking at food sensitivities and a couple of other things that led me into learning about wheat sensitivity; gluten sensitivity; and the trigger of intestinal permeability. For example, in the United States, 78% of the prebiotic diet is wheat. If you take wheat out of your diet, which is a very important thing, what you're also taking out is the major source of your prebiotics. And prebiotics feed probiotics, which are the good bacteria in your gut. If you take wheat out of your diet without the right education or mentorship, you lose the main prebiotic source, and, as a result, probiotics in your gut (the good bacteria that need that food) start starving. Some probiotics begin to die off, and the bad guys in your gut that have been kept in check to some degree by those probiotics now become opportunistic and rear their ugly heads. This is why it is so helpful to find a certified gluten-free practitioner or nutritionist when you are on a gluten-free diet: This is especially important before and during pregnancy. You want to prepare your body to be free of antibodies prior to conception, and you want the proper nutrition to support both you and a developing baby.

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