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  • Jean Duane PhD
    Jean Duane PhD

    Surmounting Social Situations – Traveling Versus Staying Home

    Reviewed and edited by a celiac disease expert.

    You paid for food on this trip and we want to accommodate your needs. Please tell us how to do that.

    Surmounting Social Situations – Traveling Versus Staying Home - Image: CC BY 2.0--matita2073
    Caption: Image: CC BY 2.0--matita2073

    My husband gave me an “adventure island hopping tour” to Greece for a graduation present that included two dedicated guides, all meals, and one or two adventures a day with a group of thirteen other people we had not previously met. To prepare, we increased our workouts and added regular six mile walks. We were very excited to see Greece in this way! The tour company sent me a form to fill out asking me to disclose food allergies. Prior to filling it out, I investigated the foods in Greece to see what they ate, how foods were prepared and to get an idea of what I thought 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 then grill bread on the same grill (without cleaning in between). 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.

    The Social Aspects of Food Sensitivities survey I conducted revealed that travel is by far one of the most challenging activities for those with celiac disease or food sensitivities. In my extensive interviews, I 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. I resolved that I wouldn’t let celiac disease debilitate me, and force me stay at home. I want to experience life! So, whenever I travel, (heck, even when I leave my home to go anywhere) I always carry a 3 oz. pouch of tuna and a ½ cup sealed package of walnuts (purchased in the baking aisle at the grocery store) and a fork. (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, and quells my “food insecurities.” I feel confident knowing I always have food with me. So even though I anticipated finding safe foods in Greece, I packed snacks such as Lara bars, RX bars, pre-packaged walnuts and almonds, pouches of tuna, dehydrated vegetables, and turkey jerky, (easy to reconstitute into soup) just in case. I even packed some of my favorite chocolate.



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    At that first welcome meal that was abundant with lovely Greek foods served family style, I realized that nothing on the table was safe because nearly every dish contained gluten, and foods such as salads were likely prepared on surfaces also used to slice bread. Further, 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. So, 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 Greek in the 15th century. 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 remembered a time in my past before diagnosis when I went through a “Greek Food” phase and 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 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 seemingly unusual 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 there while these strangers raved about the flavors and I tried 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 said that 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 risk insulting anyone. Later on, 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 with 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. That 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) for every meal for ten days 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 done in a frenzy during peak times. Disrupting that “assembly line rhythm” when trying to serve a lot of people at the same time 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 a reflection on the cook – they are doing what they do with tried and true methods with the goal of getting hot, tasty food on the table. Knowing this, I’d rather go hungry because cross-contamination in one meal with just a spec of gluten would ruin my trip, and make me miserable for weeks. I was in a 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. It led to 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 known. Here, it seemed very obscure. In fact, I learned that the Celiac Society has only had a presence in Greece for one year. Celiac disease is virtually “unknown” at the moment. 

    I thought about the “raw ingredients” presented at 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 (translated on Babblefish, and made them laugh!). 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 and 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 to each of the restaurants “safe practices” 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, and I am still touched by his kindness.) One time, the guide actually cooked my meal for me! Several of the chefs objected to boiling fish, and 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 tact rather than trying to convey the nuances of safe practices to people who have never heard of such a thing. 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.

    The 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. 

    I learned a few lessons too. For someone as outspoken about celiac disease, sometimes my own timidity surprises me, but as I said, I really didn’t want to be a bother, or to make the entire trip focused on my food requirements. An extensive study conducted by Peniamina, Bremmer, Conner, and Mirosa (2014) found “the main qualities seen as important for coping with allergen-free eating were assertiveness and organizational skills” (p. 943). Assertiveness, they continue 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 is something that 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 just 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 does feel 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. I also realized that the further away from home I get, the more my “food insecurities” abound. Realizing this is important and requires mitigation strategies such as packing roughly 1,000 calories of food per day in my bag, and knowing where grocery stores are when I get someplace. 

    When conducting the interviews for the Social Aspects of Adults with Food Sensitivities, many study participants said they gave up trying to travel internationally, though some still do. A world traveler said that Denmark and Italy were very knowledgeable about safe practices, and that the British Isles are the mecca for travel for someone with celiac disease, specifically Ireland. Another who spent a semester in Spain said they were very aware there when cooking her meals.

    Border control can be an issue. It is mandatory to research the country’s restrictions before going, though one person told me she still does travel and discovered that customs agents in some countries will throw away foods you bring, and that it is inconsistent, depending on which agent you get. It seems that manufacturer sealed foods are more likely to be approved, than foods stored in zipper locked bags. That is why I brought only factory-sealed foods, however the Greek border control did not even ask about the foods I was carrying. In fact, I threw away more food to get back into the U.S.! Other countries have posted restrictions on the Internet. For example, no meats (like my packaged turkey and tuna) of any kind and many other foods are prohibited in Japan and other Asian countries, and all food must be declared upon entry. If the food I packed had been confiscated at customs, I would have gone hungry. Even though they accommodated my needs, the meals required caloric 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 loose much weight! (In 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 (but could have eaten picnic eggs and fruit provided at the breakfast buffets). I wouldn’t have come up with the idea of a “boiled meal” on my own, but it is a really good idea. 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 – and it is one that may work for you when travelling, or if you are put into a situation where meals are likely cross-contaminated. That idea, and the guides’ cooperation were the keys to my successful, pleasant trip. The guides also coached me on what would have been a better way to write my card. Here’s what it says now based on their suggestion:

    I have celiac disease and am allergic to gluten (wheat, barley, rye, bread, and most grains) 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 or steam my food in a pan that has been thoroughly cleaned from any residual grain. Thank you.

    Prior to going on an organized trip, I now ask these questions:

    1. Do you think restaurateurs would be able to accommodate my requests, specifically for lunch and dinner?
    2. Are there stores, stands, or markets along the way for me to purchase foods to supplement my meals?
    3. Would it be culturally acceptable for me to request a “special meal?” 
    4. If restaurateurs cannot comply, would it be acceptable if I ate foods I provide myself at the table? I do not want to insult anyone with my special needs.
    5. Do you think I could get packaged turkey jerky and manufacturer sealed packaged tuna pouches through customs in (fill in country name)?

    I consider the trip a success because I was able to enjoy the adventures and not be preoccupied with food or being cross-contaminated. I loved seeing the different islands and learning about the culture. I owe a lot of that success (really all of it) to the determination of the guides to ensure I had safe foods to eat. Though moving forward, I will be more assertive and not hope that others take that initiative for me. Further they explained that week after week, they bring large groups to these restaurants and if the restaurant couldn’t accommodate someone with life-or-death dietary needs, then they’d find one who would, and quipped, “Really, how hard is it to boil chicken and a few vegetables?” In fact, one restaurant flat out said they wouldn’t accommodate their request for me and that restaurant is now off of the tour list forever. I don’t know whether other guides on other tours would be so accommodating, but I am very grateful those two took the time to ensure I had safe foods to eat.

    I found that wherever you go, there are good people who try to understand and to accommodate, especially if you make your requests simple using familiar foods. I just wish the stakes weren’t so high if some well-meaning person makes a mistake. Going on a group-trip where all of the plans are made for you, with interesting guides that teach you about the civilization, culture, religion, foods, farming methods, and a host of other insights can be more rewarding than doing it on your own. It was a very enriching trip, and I am grateful for that potato, chicken, carrot, and green bean meal. The boiled technique brought to mind how my grandmother cooked, blanketed me with peace of mind, and enabled me to focus on sharing meaningful conversations throughout the week with my fellow travellers.

    Let’s discuss - Please respond to the questions below in the comments box below this article:

    • Does my experience encourage you to travel? Why or why not?
    • What steps do you take when traveling?
    • What have you done that has ensured a successful trip?
    • Please share your “travel” story, so we can all learn how to navigate this situation better. Thanks!

    References:

    • 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


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    I was diagnosed with celiac disease in 1997. There was absolutely no information to help me figure out the diet. The doc gave me a list of foods that were considered safe along with foods deemed unsafe. If not for a dear friend who knew of a neighbor with celiac disease my life would have been fraught with gluten poisoning and enduring weeks of recovery. 

    My husband and I will be going to Italy next year with another couple. I have gluten-free cards in Italian that provides what foods are safe/unsafe and specifically how easy it is to cross contaminate with food that has gluten in it. I also plan to pack my own snacks as well. 

    I have traveled in Mexico and was pleasantly surprised that almost all restaurants were aware of celiac disease and how much relief I felt after discussions with waitstaff and on occasion the chef. I carried my celiac disease card in Spanish but never had to pull it out of my purse. I am also vegetarian which is a lot easier to explain when traveling. 

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    I was diagnosed with celiac in 2002 at a time when very few people in the US seemed aware of it, in fact my family doctor said that when he was in medical school (late 1960s/early 1970s) he was told by his professors that celiac was so rare in the US that he'd probably never encounter a case.  I am an avid cook and have a good understanding of nutrition so was able to adapt recipes at home without too much difficulty and in recent years, eating out has become much easier.   I also travel a lot, often in a small group with a guide or guides.  I always carry dining cards in appropriate languages (free, in multiple languages at celiactravel.com) and take a few energy bars and crackers (I used to take nuts, packets of tuna and many other snacks).  The only country where I have consistently had problems was Germany, wait staff often refuse to help or if asked what I can eat, reply 'nothing on our menu'.  I recently visited Norway and Finland which have to be celiac heaven.  There every meal item has a list of all allergens, wait staff were well educated about ingredients and celiac, there is gluten free beer on every menu and everywhere I ate, I was served good gluten free bread.  Other countries that are very accommodating include India, Ecuador, Italy, the UK, France, Spain, Turkey and New Zealand.  I always make my problem known to the travel company and guide in advance, and have always encountered great care to ensure there's no cross-contamination.  Most international airlines offer gluten free meals, although they are almost uniformly tasteless with overcooked  chicken, rice and a vegetable - I often order Hindu meals which, apart from bread products, is gluten free and taste a lot better.   In the early days, I had more difficulty eating safely in the US than overseas, numerous times salad came drenched in non-gluten-free dressing and covered in croutons, the meat would be tossed in flour or there'd be soy sauce added 'for extra taste'.  

    my advice for those of you with celiac - please consider traveling overseas, make sure the people who can control meals are fully aware of what celiac involves, take those dining cards and some snacks and above all, smile and be polite about it 

     

     

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    Many travelers have stated Italy is a celiac haven. So much so that gluten free foods are available in every Italian drug store (pharmacia), I (free if you can prove Italian ancestry, Italian children by law must be checked for celiac disease by the age of 10.  NO one has reported ever getting sick- bring a language card- but a few [phrases work- sans gluten-- True about Ireland, Denmark & Norway as well. A far as "boiling chicken or fish" how about "poaching" a classic cooking skill that would work nicely, or sauteeing in a clean saute pan w olive oil? The thought of eating boiled foods is one I personally could not tolerate when other methods would work as well and be safe. The key to all travel is research -research-research- and plan, plan, plan.

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    I have had great gluten-free experiences when traveling by cruise ship, especially on Norwegian ships. You should let them know your dietary needs when you book your cruise, and to be absolutely safe you would need to avoid the buffets (although I have eaten hardboiled eggs in the shell, and sliced cheeses with no ill effects).

    On my Norwegian cruises the special diets person would come to me each evening as I finished my meal in one of the dining rooms. They go over the menus for the next day, and explain which items they can make gluten-free for me. It's absolutely heavenly to feel so taken care of!

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    Great article!  That was a wonderful, detailed account that I found very useful and thought-provoking.

    I have never 'traveled' with my recent diagnosis.  Honestly, I'm fairly concerned because I also have DH and have found I'm ridiculously sensitive.  I once had a breakout that manifested on my face and now worry about having what I call 'the zombie look' if I get contaminated.  What a joy that would be on vacation and in photos! :)

    My husband and I want to take a trip in country and for that I'll take an InstantPot along which will cover a lot of bases and can be used in any hotel room.  I've already decided to pack along a kitchen kit to use in case I can't find any good options to eat out.  Overseas travel is another matter entirely and just intimidates me.  This article and the replies have given me some really good food for thought and more confidence that it can be done successfully.  Thank you!

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    I'm curious about the comments in the article and the follow-up comments saying asking for something cooked in a cleaned/thoroughly cleaned pan or pot - is that really safe?  I've been under the impression that it's nearly impossible to clean a pan that well that has been used for anything containing gluten.  The common wisdom was to get rid of all your previous pots and pans due to contamination (after a diagnosis) so how can that work at a restaurant?

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    Smooth stainless steel pans can be cleaned.  The concern is mainly scratched nonstick pans or other pans where gluten could remain in scratches or other rough spots.

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    Traveling with celiac disease can be done with planning.  My family chooses our road trips based on finding dedicated gluten-free restaurants beside the usual tourist or hobby attractions.  If we are unable to find a suitable restaurant (read celiac reviewers on Find Me gluten-free app), we picnic or tailgate.  Yes, we haul a “5 day” cooler and a kitchen bin with us.  I usually try to cook and freeze foods in advance.  For cross country trips, we invested in a small RV.  Now I have a dedicated kitchen with me wherever we go in the continental US.  Best investment ever!  

    We have traveled in Europe.  Many cruise lines can keep you safe.  You will be happy as long as that is your goal.  The variety is less, but that is okay with us.  Countries that have large identified celiac disease patient population  (like Finland, Ireland, Italy, etc) are great places to travel too.  Get those gluten-free translation cards.  We used them in even in grocery stores.  Again,  we bring or buy a collapsible cooler and tailgate when necessary.  This is actually how my parents managed to travel with us back in the “olden days”.  It was a way to save money!  

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    I have found your article fascinating and inspiring.  While I'm still hesitant to try travelling with the addition of my most recent and by far most challenging allergy, garlic (on top of the gluten, mammal products - meat and dairy, some fruit and nuts), you have given me the tools to try.  I can attest to the fact that England has great gluten-free food available.  I miss the toffee shortbread biscuits!

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    Thank you so much for sharing your story! I also cant have gluten (including oats) or dairy, I'm extremely sensitive (I've gotten sick many times just from gluten blowing around), and I'm not naturally assertive so this struck home. 

    • Does my experience encourage you to travel?
      • Yes! It's always good to hear about kind people who care and look out for you, it does make me a bit nervous about travelling in Greece (not going to lie) but it's great to hear that it's doable. 
    • What steps do you take when traveling? What have you done that has ensured a successful trip?
      • So far the only place I have traveled internationally with Celiac's (outside of the U.S.) is Japan (Spring 2018), and I have an upcoming trip to both Japan and Korea (my first time there with or without Celiac's).  I traveled solo to Japan without Celiac's in 2016 (not with a tour), then with "friends" and my now ex in 2018 (not with a tour), and I'll be going solo again (not with a tour). I do not speak Japanese or Korean (other than your typical phrases/words).
      • For Japan in 2018, I put together a "restaurant allergy" card (an 8.5x11" laminated paper) that went into detail about Celiac's (i.e., what my symptoms are) and cross-contamination risks, and  then had two columns in the middle, one with a big red "no" symbol and one with a big green "check" symbol for the lists of foods I can and can't eat.  I tailored the list specifically for Japan (i.e., I included things like soy sauce, sake, rice vinegar, tofu, etc.).  I found that those two short lists within my document were what the waitstaff immediately went to and read. I did have a lady that hosted us at one of our airbnb's read it and she said it made complete sense and any Japanese person should be able to understand my dietary needs.  Anyways, I digress. 
      • When presenting my travel card to waitstaff, I always tried to make sure they knew it was completely okay to tell me that I wouldn't be able to eat anything at their restaurant, I think having an "I totally understand if it's not safe, I appreciate your honesty so much" attitude really helped them feel more comfortable.  I always tried to have a smile and laugh along with them when I saw them freaking out about how I couldn't have soy sauce, as if to say "Yeah I know, right?? Crazy!!" I didn't encounter any negativity from waitstaff in Japan, they were all pretty okay with it (sometimes were confused but they never got upset or told me to leave). We shall see how Korea is!
      • In addition to the card, I follow the #glutenfreejapan and #glutenfreekorea hashtags on Instagram so that I can see restaurants that other people with Celiac's have found.  I then do my own research on the restaurants and usually follow their social media as well.  Once I've found a safe spot based on reviews and such, I save it on my Google Maps (Note: Korea does not use Google Maps so you have to use something like Kakao Maps). 
      • I typically research what other Celiacs do in the country I'm visiting and how they survive.  For example, in 7-11s in Japan I can safely eat their prepackaged chestnuts, plain rice balls,  packaged hardboiled eggs, and flavored soymilk (my favorite is banana!!!). While 7-11 food gets SUPER boring after a few meals, it's good in an emergency.
      • I've noticed that the places I can eat at are typically either all-meat places (think all you can eat grilled meat, Korean BBQ style, or, in Japan, Yakiniku) or places that cater to vegans and vegetarians (perfectly balanced, meat and veggies! Haha).
      • I also bring gluten free soy sauce packets with me, it's a life saver. 
      • I always try to plan out where I will be eating my meals that day so that I don't get "hanxious". I actually had a really terrible trip when I went with my then boyfriend (I almost broke up with him after the trip, I should have in all honesty) and two of his friends (another couple). There was one point where I had gone without eating for almost 8 hours and I broke down crying in the middle of a street/sidewalk area because I was so hungry and no one was backing me up on my quiet pleas to stop for food and eat, because they were busy snacking on various street foods that they were finding along they way so they weren't hungry and didn't care about little ole me. The trip was honestly not that great because of it (it trip was riddled with similar occurrences), and I'm looking forward to travelling solo again.  Honestly though, I don't think travelling with others again would be too bad as long as I was with people who cared?  Or who didn't mind if I went off on my own to eat?  The people I was with wouldn't let me break off from the group to eat alone, it was frustrating. 

    Hopefully this helps!  I don't think I can attach Word files or I'd attach my gluten-free/DF Japanese restaurant card.  Anyways, I hope everyone has safe travels wherever you may go! :) 

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    I used the app "Find Me Gluten Free" and discovered a wonderful restaurant in Chattanooga, TN called "Bantam and Biddy". The app allows users to rate celiac friendliness and comment on their experiences. I was floored that Bantam and Biddy have dedicated gluten free fryers. I ate there every night after discovering them. It's the first time in 13 years I've had fried chicken and fried green tomatoes at a restaurant. I ate way too much, but knowing that I could eat safely meant a lot to me. On the flip side, a restaurant in Knoxville, TN, labeled some menu items as gluten free. When I questioned the waiter about ingredients, I was told that the menu is "deceptive" and that gluten free applied to the basic ingredients, but not to sauces, dressings or other added ingredients. When I spoke with manager about this, she was defensive and assured me that they understand gluten sensitivity. Never going there again, but am thankful for all the resources available to people with food allergies today. 

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  • About Me

    Jean Duane PhD

    Dr. Jean Duane is a social scientist and author of Gluten Centric Culture – The Commensality Conundrum, which summarizes a nation-wide study on understanding the social aspects of food/gluten sensitivities and celiac disease. Additionally, she wrote Bake Deliciously! Gluten and Dairy Free Cookbook and The Complete Idiot's Guide to Gluten Free Cooking Cookbook. Dr. Duane produced several spots for Comcast's Video on Demand, made television appearances on PBS and has been a featured speaker at two International Association for Culinary Professionals' Conferences and at the Gluten Intolerance Group of North America's International Conference. Dr. Jean Duane is a certified chef, has an MBA, and a PhD. A researcher, cooking instructor, speaker, and magazine writer, she won Kiplinger's "Dream in You" contest in 2006. Jean can be reached via alternativecook.com.


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    Jean Duane PhD
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?


    Jean Duane PhD
    Celiac.com 10/17/2018 - In the interviews I conducted last year, the Celiac.com viewers shared with me some disturbing stories about how others either sabotaged their gluten-free diet or how their gluten-free requirements are continually scrutinized and doubted. Here are a few examples:
    A co-worker at my office ate a gluten-containing burrito and thought it would be funny to cross-contaminate my work space.  With his gluten-coated hands, he touched my phone, desk, pencils, pens, etc. while I was not at my desk.  I came back and was contaminated.  I had to take several days off of work from being so sick. The waiter at a restaurant where I was eating dinner asked me if I was really “a celiac” or if I was avoiding gluten as a “fad dieter.” He told me the food was gluten-free when he served it, only to come up to me after I ate the dinner and admit there was “a little” gluten in it. My cleaning people were eating Lorna Doones (gluten-containing cookies) while cleaning my gluten-free kitchen, cross-contaminating literally everything in it. When I noticed I exclaimed, “I am allergic to gluten, please put your cookies in this plastic bag and wash your hands.”  They chided, “You have insulted our food.  We are hungry and we will eat anything we want to, when we want to.” At a family dinner, Aunt Suzie insisted that I try her special holiday fruit bread. In front of everyone around the table, she brushed off my protests and insisted that I over exaggerated my food sensitivities saying, “a little bit wouldn’t hurt you.”   These are but a few of an exhaustive list of situations that we regularly contend with. What can possibly be the rationale for any of this conduct?  I’m providing some recent headlines that may impact the attitudes of those we interact with and would like to hear what you think influence this behavior (see questions below). 
    Recently, the New York Times published an article entitled, “The Myth of Big, Bad Gluten.”  The title alone casts doubt on the severity of gluten exposure for those with CD (Myth, 2015)   In his political campaign, Senator Ted Cruz stated that if elected President, he would not provide gluten-free meals to the military, in order to direct spending toward combat fortification (Wellness, 2/18/16).  Business Insider.com called Tom Brady’s gluten, dairy free diet “insane” (Brady, 2017). Michael Pollen is quoted as saying that the gluten-free diet was “social contagion.” Further, he says, “There are a lot of people that hear from their friends, ‘I got off gluten and I sleep better, the sex is better, and I’m happier,’ and then they try it and they feel better too.  [It’s] the power of suggestion” (Pollan, 2014). Jimmy Kimmel said, “Some people can’t eat gluten for medical reasons… that I get. It annoys me, but that I get,” and proceeded to interview people following a gluten-free diet, asking them “what is gluten.” Most interviewed did not know what gluten is. (ABC News, 2018). Do headlines like this enable others to malign those of us making our dietary needs known?  Do these esteemed people talking about gluten cast doubt on what we need to survive? 
    Humans are highly influenced by others when it comes to social eating behavior. Higgs (2015) asserts that people follow “eating norms” (p. 39) in order to be liked. Roth, et al. (2000) found that people consumed similar amounts of food when eating together.  Batista and Lima (2013) discovered that people consumed more nutritious food when eating with strangers than when eating with familiar associates. These studies indicate that we are hypersensitive of what others think about what we eat. One can surmise that celebrity quips could also influence food-related behaviors. 
    Part of solving a social problem is identifying the root cause of it, so please weigh in by answering the following questions:  
    How do you handle scrutiny or sabotage of others toward your dietary requirements? Please speculate on what cultural, religious or media influences you suppose contribute to a rationalization for the sabotage and/or scrutiny from others when we state we are observing a gluten-free diet? Are people emulating something they heard in church, seen on TV, or read online?    We welcome your answers below.
    References:
    ABC. (2018). Retrived from https://abcnews.go.com/Health/video/jimmy-kimmel-asks-what-is-gluten-23655461  Batista, M. T., Lima. M. L. (2013). Who’s eating what with me? Indirect social influence on ambivalent food consumption. Psicologia: Reflexano e Critica, 26(1), 113-121.  Brady. (2017). Retrieved from https://www.businessinsider.com/tom-brady-gisele-bundchen-have-an-insane-diet-2017-2  Higgs, S. (2015). Social norms and their influence on eating behaviors. Appetite 86, 38-44. Myth. (2015). Retrieved from https://www.nytimes.com/2015/07/05/opinion/sunday/the-myth-of-big-bad-gluten.html  Pollan, M. (2014). Retrieved from https://www.huffingtonpost.com/2014/05/14/michael-pollan-gluten-free_n_5319357.html  Roth, D. A., Herman, C. P., Polivy, J., & Pliner, P. (2000). Self-presentational conflict in social eating situations: A normative perspective. Appetite, 26, 165-171. Wellness. (2016). Retrieved from  https://www.huffingtonpost.com/entry/ted-cruz-gluten-free-military-political-corectness_us_56c606c3e4b08ffac127f09f


    Jean Duane PhD
    Celiac.com 02/01/2019 - When I was first diagnosed, I couldn’t believe the “rhetoric” about how sensitive a person with celiac disease is. It just didn’t resonate. I remember being told at a support group by a woman I deemed at the time to be histrionic, that a plastic strainer previously used to drain gluten-containing pasta could cross contaminate me, and that microscopic crumbs on the counter could be deadly. It just seemed to me at the time that she was “over reacting.” I thought: “Nobody could be that sensitive!” Back then I continued to bake gluten-containing goods for my husband. (That was torture by the way, to make my favorite brownies for him and not eat any of the batter.)
    I made him gluten-containing bread in my bread machine. I continued to have the terrible rashes. Noticing this, my husband suggested that he only buy store-bought bread, and promised to be very careful with the crumbs. We separated the condiments, labeling the ones I used as “gluten free” with a Sharpie and storing them on separate shelves. I continued to have the terrible rashes, becoming desperate for them to go away. Somehow, in spite of his carefulness, I was getting “glutened.”
    We decided together that we had to make the house gluten-free. Meanwhile, I developed recipes that replicated the foods we loved before – all gluten-free. I finally recovered my health because of living in a completely gluten-free home. I realized that the support group woman was right, and that a minute amount of gluten can cause me weeks of misery. Today, we do not allow gluten in our home at all, except in the bottled beer my husband occasionally drinks. Beer leaves no crumbs and is easy to contain, and it is a small concession for all that my husband does to accommodate me. 
    Many of the people I interviewed in the survey (Relational Aspects of Food Sensitivities - Survey Half-Time Report) reported that they also have gluten-free homes, but some didn’t. Those who didn’t described being regularly cross-contaminated in their own homes. Those who lived with the ever-present threat of accidentally ingesting gluten reported relationship strife. Several participants told me that gluten was the “straw that broke the camel’s back” in breaking up their partnerships. Having to dodge gluten in the one place that all of us should feel the safest compels me to contrast other diseases such as diabetes, alcoholism, and coronary heart disease with the experiences I discovered with my research of those living with celiac disease. 
    Diabetes is a life-threatening illness that requires vigilant management
    A study conducted by Rintala, Paavilainen and Kurki (2013) showed that families members living with an individual with diabetes often engage in compassionate behavior, such as urging glucose checks, offering appropriate foods and keeping a close watch for signs of hypoglycemia. The authors reported that family members consider the management of diabetes as an integral responsibility to ensure adherence. Another study conducted by Manoogian, Harter and Denham (2010) found that family members take on an attitude of solidarity to support members with diabetes. When a person declares they have diabetes, their dietary needs are typically respected. Contrastingly, when a person determines they are gluten sensitive, they are often subjected to scrutiny, suspicion, and doubt. Many participants that I interviewed expressed frustration in convincing family members of their gluten-free requirements. Whereas those with diabetes can sometimes indulge in sugar consumption, adjusting their insulin accordingly, for those with celiac disease, a little gluten is not an option. Presently, those with celiac disease do not have a reliable gluten-cancelling drug.
    Cohabitants living with a recovering alcoholic are urged to curtail alcohol in the home
    The prevailing advice for families with a recovering alcoholic is to maintain a ‘dry’ home (a home without alcohol) in order to reduce temptation and to make it less available to encourage long-term abstinence (Groh, Jason, Davis, Olson, & Ferrari, 2007). Further, to reduce feelings of isolation on the part of the recovering alcoholic, it is recommended that family social gatherings forego serving alcoholic beverages. In addition to removing all alcohol from the home, recovery centers (Addiction Center, 2018) also recommend finding ‘sober’ activities to do together, building a peer group of ‘sober’ friends and focusing on different elements of life, to help the recovering alcoholic maintain sobriety. Of course, all families handle this differently, ranging from full cooperation and support, to continuing to drink in front of the recovering alcoholic. A person with celiac disease living in a gluten-filled home is similar to a recovering alcoholic living among regular alcohol consumers. It just causes strife.
    Another disease that affects family diets includes coronary heart disease
    In a longitudinal study of nearly 200 families, McKenzie (1982) found that family compliance to the heart-friendly diet ensured success for the family member with heart disease. In fact, family compliance and adherence achieved the highest levels of success (p. 104). Many of the participants in my study reported that their families, especially extended families, did not adhere to the gluten-free diet. 
    Celiac Disease is a life-altering illness that requires vigilant, lifelong adherence to the gluten free diet
    Living in a house where gluten is present poses serious health risks for those with celiac disease or non-celiac gluten sensitivities (NCGS). Gluten crumbs and flour dust in the air affect those who are most sensitive. The risk of cross-contamination through the slip of a knife on bread makes it risky once the jar is open. Airborne gluten inhaled from cutting a gluten-containing sandwich, according to Hendricks (2013) and flour dust from baking is enough to “trigger the inflammatory cascade” for those with celiac disease (p. 52). Those with celiac disease who live in homes where gluten is the fare risk cross-contamination.
    Research by Catassi et al. (2007) indicates that 200 ppm, the amount of gluten permitted in European “gluten-free” products that are made using Codex wheat starch, “is not a safe threshold because the harmful gluten intake of 50 mg/d could be reached even with a moderate consumption (less than or equal to 250 g/d) of nominally gluten-free products” (p. 165). Further, Laurin, Wolving and Fälth-Magnusson (2002) report that gluten in small quantities can trigger relapses for those with celiac disease. Therefore, a person with celiac disease living in a home where gluten is present may present an ongoing health hazard. 
    In the interviews I conducted last year for my dissertation, many participants reported that their homes were not gluten-free. Some said they have suffered regular cross-contamination as a result become sickened on a regular basis. In a quality of life study, Peniamina, Bremer, Conner and Mirosa (2014) found that those with celiac disease reported, “Other people don’t understand about my food allergy and are uncooperative or unkind toward me” (p. 935). Is it unkind for other family members to continue to consume gluten containing foods in the home of a person with celiac disease? 
    What do you think? Here are some conversation-starter questions:
    Is it reasonable for those with celiac disease or NCGS to request a gluten-free home – similar to the homes described above for those with coronary heart disease, or recovering from alcoholism, or living with diabetes?  Someone I know recently told me that he was going to keep eating gluten in spite of the consequences because he was afraid his soon-to-be-wife would not marry him if he had such drastic dietary restrictions.  Is the diagnosis of celiac disease or food allergies potentially a relationship breaker? How do you manage to stay gluten-free and un-cross-contaminated in your home? How do you assert your gluten-free needs in your household? Please share your experiences below and how you manage your gluten-free requirements in your home.
     
    References:
    Addiction Center (2018). Retrieved from https://www.addictioncenter.com/rehab-questions/how-do-i-help-a-recovering-addict-or-alcoholic/ Catassi, C. Am JClinNutr 2007; 85:160–6. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Fasano, A. & Catassi, C. (2012). Celiac Disease. The New England Journal of Medicine, 367(25), 2419-2426. Groh, D., Leonard, J., 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, 49-55. doi: 10.1080/10550490601080084 Hendricks, J. (2013). Understanding inflammation. Alternative Medicine 12, 50-53. Laurin, P., Wolving, M., & Fälth-Magnusson, K. (2002). Even small amounts of gluten cause relapse in children with celiac disease. Journal of Pediatric Gastroenterology and Nutrition. 34, 26-30. Manoogian, M. M., Harter, L. M., & Denham, S. A. (2013). Storied Nature of Health Legacies in the Familial Experience of Type 2 Diabetes. In J. Koenig Kellas (Ed.) Family storytelling: Negotiating identities, teaching lessons, and making meaning (pp. 79-96). New York, NY: Routledge. McKenzie, J. (1982). Long term cholesterol response and compliance with modified fat eating styles among families at increased risk of coronary heart disease. (Doctoral Dissertation). Retrieved from ProQuest  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 Rintala, T. M., Paavilainen, E., & Astedt-Kurki, P. (2013). Everyday living with diabetes described by family members of adult people with Type 1 Diabetes. International Journal of Family Medicine. doi: 10.1155/2013/967872


    Jean Duane PhD
    Celiac.com 07/12/2019 - "I think you might be reacting to gluten." How many times do you want to say that to loved ones who are suffering with familiar symptoms? Many of the people I interviewed in my "Social Aspects of Celiac Disease Survey" on Celiac.com shared that they observe signs of celiac disease or gluten sensitivity in family members, but are met with a wide range of (often negative) responses when suggesting symptoms may be gluten-related. Those of us who live with the disease, and who are well informed about the many manifestations of gluten intolerance "just know" that other family members may be reacting to gluten. We hear our family complain of indications ranging from joint pain, migraines, swelling, brain-fog, gas, bloating, back pain, leg numbness, and gastro-intestinal issues (Fasano & Flaherty, 2014), to name a few. There are actually over 200 symptoms of gluten intolerance according to Wangen (2009, p. 37). We also know how positively the body responds to a gluten-free diet and often want to share our knowledge and secret to thriving health with our family members. What kind of kinfolk would we be if we didn't? On the other hand, we don't want to become "that person" who attributes every malady to gluten (though scientific studies exist to support that premise such as work done by Fine (2003) who estimates that roughly 95 million Americans react negatively to gluten, and Fasano et al. (2015) who estimates that one third of Americans have gluten sensitivities not detectable from serological testing. 
    Let's be clear—we're not trying to give medical advice. We are just offering our hard-earned knowledge to urge symptomatic family members to get tested.  Though that, as we know may send them down a difficult path. Many respondents reported being misdiagnosed with a plethora of illnesses ranging from stomach cancer, pancreatitis, brain cancer, and IBS only to learn years later that they actually had celiac disease. In fact, it takes an average of twelve years for a person to be properly diagnosed with celiac disease (Green & Jabri, 2003) likely because doctors are not inclined to initially screen for it (Fasano & Flaherty, 2014), and because the symptoms are often similar to other diseases.
    We mean well when we suggest it may be gluten causing the problems for our loved ones. After all, celiac disease is a genetic disease, so it makes sense that relatives are tested once one family member is diagnosed. However, there is a phenomenon I have observed about celiac disease. The phenomenon is called "othering" referring to the tendency for family members to treat celiac disease as "your" disease, not "mine." Exploring studies that associate disease contextualizes the practice of "othering." 
    Rohleder (2015) reports that those with HIV (even those infected with blood transfusions) are irrationally stigmatized, or "othered" because the disease is associated with "bad or immoral" behavior (p. 65). Similarly those with celiac disease cannot participate in social rituals involving gluten and are "othered" in the process. For example, a survey respondent said after being diagnosed with celiac disease: "That gluten-free diet is not for me… I don't want to be like you" and went on to explain it was because she did not want to be subjugated from rituals such as birthday cake on birthdays, pizza on movie night, or to exercise the hyper-vigilance required to avoid gluten cross-contamination. Foods are integral to sociocultural familial rituals and non-participation in established rituals (Fiese, Hammons, & Grigsby-Toussaint, 2012) causes the non-participant to be "othered."
    In a recent Asian study on leprosy, a skin disease, Schug (2016) reports that sufferers are required to isolate themselves in specific communities to thwart off spreading the infection to the public, and because they believe those who have it are "spiritual[ly] pollut[ed]" (p. 1). While celiac disease is not spread by infection (it is genetic) one must question whether the tendency to "other" those with celiac disease is a form of social adaptation. Schug (2016) describes the "othering" phenomena "whereby difference is recognized, constituted, and signified as negative and potentially harmful" (p. 1). Dermatitis herpetiformus the manifestation of celiac disease, on the skin causes those who have it to report wearing long sleeves and pants to cover their bodies when going out in public to prevent anyone from seeing it. I personally had to wear gloves, even in the summer because my hands were so disfigured with bad outbreaks. Though I didn't have terminology or understanding of the concept of "othering" at the time, I knew not to let anyone see the extent of my ailment, fearing being shunned, and actually hid in my home during the worst of the outbreaks, often for weeks until they subsided. I can certainly understand how family members who witnessed my suffering would "other" me, not claiming that for themselves, no matter what symptoms they may be experiencing! If our family members witness the multitude of symptoms gluten can cause, it is no wonder they want to think of it as "our" disease and not "theirs" taking strides to separate themselves and to avoid a similar diagnosis. 
    In another study Rohrbaugh et al. (2008) found that people suffering heart problems tended to survive longer when spouses referred to the problem as "ours" versus "yours" (p. 781). Communal cooperation (Lyons et al., 1998) occurs when families discuss new circumstances required by a member with a disease by describing it as inclusive "we" talk versus exclusive "me" talk (Rohrbaugh et al., 2008). People with a disease who live in families who accept the disease as "we" or "ours" are much more likely to succeed.  Successfully "coping with stressful life circumstances is a social process" (Lyons, et al., 1998, p. 582). However, the phenomenon of "othering" seems to be an initial response while inclusiveness evolves over time with familial acceptance.
    Though some in my study report cooperative family situations where everyone "embraced" the gluten-free diet and worked together to help the member with celiac disease, many describe how they are "othered" by immediate and extended family members, causing them personal strife, as well as a reluctance to recommend to symptomatic family members to get tested. Therefore, the social situation for this edition addresses the question, "How do we help our family members who have symptoms we attribute to gluten consumption? The first step is to understand the tendency toward "othering." When people first hear of something they fear, one coping mechanism is to protect themselves by separating from the situation (Ellis, 2018). It is human nature and a primal survival tactic. Understanding that "othering" is a normal knee-jerk reaction helps us to comprehend why people react the way they do when we are trying to be helpful.
    For example, one respondent in my study said she observed symptoms of gout in her uncle and inflammation in her nephews. While at a family dinner, she reminded them "her celiac disease" is a genetic disorder, and was met with the response, "What? Aren't you just being dramatic? Maybe you are following the diet to get attention?" She said, "I think you should be tested because I don't want you to develop lymphoma." Another respondent daughter diagnosed with celiac disease said her dad refuses to eat a gluten-free diet, and that her mother is sick all the time—to the point of being hospitalized, but her mother's endoscopy was inconclusive. The daughter strongly feels her mother is reacting to gluten, but since her father won't cooperate the mother/wife continues to prepare gluten-containing foods for their meals, sacrificing her health to comply with her husband's wishes. Other respondents said family members object to eliminating wheat from the diet for religious purposes, citing the Bible sanctifying wheat for human consumption (see Psalms 81:16; Psalms 147:14; Ezekiel 4:9; Joel 2:24). One person told me her friend's pediatrician told her that her son should avoid eating gluten. The mother said, "No, that's just not for him. It is too much trouble and he'll be rejected by his friends." By "othering," the disease, these scenarios illustrate how people erect a shield to protect themselves or loved ones from facing the inconveniences associated with celiac disease.
    There are a lot of mixed feelings about celiac disease and gluten sensitivities, especially for those who know us and witness the inconveniences it causes. For example, consider a participant in my study who reports how "accidents" make her late for everything. She said, "[I'm] on vacation with my daughter and whoops, had an accident, and then have to turn around and go back." She attempted to explain her plight to her daughter, to help her understand why she had to stop at bathrooms while driving to and from various destinations. Though the daughter exhibits symptoms of celiac disease, she refuses to be tested because she (erroneously) believes it "skips a generation." This is a convenient "othering belief" that keeps the mother's disease "hers" and not "ours."
    Assuming family members eventually "come around," to want to understand the cause of their symptoms, what do we say? For those members who recognize their symptoms may be associated with gluten and who earnestly want to seek a proper diagnosis, there are several tests that are emerging beyond the endoscopy and serological testing. One of particular interest is a stool test developed by Dr. Kenneth Fine. Dr. Fine is a gastroenterologist who started the Intestinal Health Institute and Enterolab to develop screening that reveals earlier stage immune responses by focusing on stool analysis rather than blood or skin tests to diagnose immune reactions to food sensitivities (Fine, 2018). Fine's (2018) new early-detection procedure identifies antibodies in the stool, before they progress to the bloodstream. Using this technique, he tested a random sampling of nearly 8,000 Americans and determined that approximately 29 percent show signs of autoimmune response to gluten. He states that customary tests of blood and skin show only later-stage disease manifestation, and that his tests can reveal early-stage immune responses (Fine, 2018). This is significant because many who have the traditional "celiac panel" blood tests, test negative for the disease (Celiac.org), possibly because the disease has not progressed enough to appear as antibodies in the blood. 
    Consider that many doctors still believe celiac disease is rare. This may be attributed to the fact that celiac disease was not in the US Department of Health and Human Services and the National Institutes of Health's National Institute of Diabetes and Digestive and Kidney diseases before 1994 (Fasano & Flaherty, 2014, Loc 237). US doctors trained before 1994 are likely unaware of celiac disease.  Therefore, accurate outcomes rely on what doctor is chosen, and what tests the doctor chooses to prescribe to obtain a diagnosis. Inconsistencies in the diagnosis process contributes to the "othering" effect because family members may undergo what they think is comprehensive testing, but may not have been properly assessed. Fine's early testing method is an exciting new development for family members who may have tested negative to customary tests, but who still exhibit symptoms. Medical diagnostic inconsistencies contribute to the "othering" phenomenon. If we felt our family members were correctly tested, we would be more at ease with a negative diagnosis, but unfortunately because of testing inconsistencies, there is often doubt about whether a family member was properly tested, even after seeking medical input. 
    Another test is a fingertip blood test that has been developed to screen first-degree relatives for celiac disease as a first pass, according to Popp et al. (2013). It tests for IgA class and EMA antibodies, but does not test for other indicators of celiac disease such as IgA and IgG. Both, the Fine and the Jinga et al. tests are steps toward earlier detection. Research using these new testing procedures may provide the public with early-warning indicators of autoimmune responses to gluten and other food-allergens that previous serological and skin tests did not indicate (Fine, 2018). 
    The HLA-DQ gene marker test (a cheek swab) can determine with 90% accuracy whether someone has a pre-disposition to develop celiac disease (Tollefsen, et al., 2006). Surprisingly, a study conducted by Megiorni, et al. (2008) found that 90% of European white patients carry the genetic markers for celiac disease, meaning they may develop it sometime in their lifetime. They also found that females are twice as likely to develop it than males (p. 997). 
    We sometimes encounter resistance from family members who just don't want to have anything to do with "our" disease. This "othering" response presents some problematic social scenarios we deal with in our daily lives. With a compassionate understanding that "othering" is often an initial survival tactic, let's share ideas about how to gracefully manage these social scenarios. Together, we may be able to come up with ways to avoid being "othered" by our loved ones, and to urge them to get tests that may ultimately save their lives.
    Here's the scenario: You are at an extended family dinner and Aunt Martha complains about her brain fog and aching joints. You have been diagnosed for several years and know this could be a symptom of celiac disease or gluten sensitivity and since she is a blood relative, you wonder if she may have it too. What do you say to her? Your religious (symptomatic) brother cites the Bible and suggests to you that not eating wheat is sacrilegious. Your sister tells you that she doesn't want to honor the doctor's recommendations that her son (your nephew) follows a gluten-free diet because it is "too much trouble" and it will make him "socially isolated." Your mother went to her doctor to be screened for celiac disease and her tests were negative. When you asked which tests she had and you realize that your personal doctor must have been more informed, because you had a more comprehensive screening. You suspect that her doctor came to the wrong conclusion. How do you handle this? A personal note: Thank you to the Celiac.com readers who participated in my survey and interviews on the Social Aspects of Food Sensitivities. That study formed the centerpiece for my dissertation, which will become a book in the coming months (stay tuned). I am pleased to report that I finished my PhD in social science from the University of Denver. I couldn't have done it without your deep insight into the social aspects of living with this disease. Hopefully the awareness from this study and these articles will change some of the stigma associated with gluten sensitivity. Thank you! Jean
    References:
    Ellis, E. (2018). Fear and Othering (Masters thesis). Retrieved from ProQuest, LLC. (10817526). Fasano, A., & Flaherty. S. (2014). Gluten freedom. Hoboken, NJ: Wiley & Sons Inc. Fiese, B. H., Hammons, A., Grigsby-Toussaint, D. G. (2012), Family mealtimes: A contextual approach to understand childhood obesity. Economics and Human Biology, 10, 365-374. doi: 10.1016/j.ehb.2012.04.004 Fine, K. (2018). About Enterolab. Retrieved from https://www.enterolab.com  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., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Popp, A., Jinga, M., Jurcut, C., Balaban, V., Bardas, C., Laurila, K., Vasilescu, F., Ene, A., Anca, I., & Mäki, M. (2013). Fingertip rapid point-of-care test in adult case-finding in coeliac disease. Gastroenterology, 13(115), 2-5. doi: 1471-230X/12/115 Rai, T., Bruton, J., Day, S., Rowland, J., Higgs, C., & Ward, H. (2017). On becoming normalized: How are patients coping with the transformation of HIV into a chronic disease like any other? Sex Transm Infect, 93(1) A1-103. doi: 10.1136/sextrans-2017-053232.40 Rohleder, P. (2015). Othering, blame and shame when working with people living with HIV. Psychoanalytical Psychotherapy, 30(1), 62-78. doi: 10.1080/02668734.2015.1107125 Shug, G. W. (2016). Begotten of Corruption? Bioarchaeology and "othering" of leprosy in South Asia. International Journal of Paleopathylogy, 15, 1-9. doi: 10.1016/j_ijpp.2016.09.002 Tollefsen, S., Arentz-Hansen, H., Fleckenstein, B., Molberg, Ø., Ráki, M., Kwok, W., Jung, G., Lundin, K. & Sollid, L. (2006). HLA-DQ2 and DQ8 signatures of gluten T cell epitopes in celiac disease. Journal of Clinical Investigation, 116, (8), 2226-2236. doi: 10.1172/JCI27620 Wangen, S. (2009). Healthier without wheat. Seattle, WA: Innate Health Publishing. 


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