Gluten-Centric Culture: Chapter 10 - Taking Action–It's the Law!

Celiac.com 05/20/2023 - This is the final chapter of Dr. Jean Duane's eBook, and we would like to thank Dr. Jean Duane for publishing Gluten-Centric Culture on Celiac.com.

Gluten Centricity

We live in a gluten-centric culture where severe dietary restrictions are associated with diminished social activities. Feeling excluded and observing that gluten was a punch line in nearly every form of media encountered, I wanted to research associations between given “truths” to illustrate how gluten centricity affects the lived experiences of those with celiac disease and/or food sensitivities (Chapter 1). I felt there was a lot more to the lifestyle than just figuring out “what’s for dinner!” Living the gluten-free lifestyle seemed to negatively affect nearly every social engagement I attended. I felt isolated when not able to participate in simple acts of commensality with family and friends. Considering current numbers of Americans with dietary restrictions, I determined that I could not be the only one feeling this way. In the process of writing this book, I read hundreds of studies focused on people living with food allergies (Duane, 2019). Most studies centered on children, few on adults, and fewer on the social impacts. This led me to developing a nation-wide study concentrating on food-sensitive adults living with other adults to attempt to fill the gap in the literature.

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Those of us with gluten sensitivities sometimes find ourselves at odds in social rituals, from taking communion in church to sharing the same foods around the dinner table (Chapter 3). We’re even omitted from the USDA food guidelines (Chapter 2). Our disease often isn’t taken as seriously as other diseases that revolve around eating a restrictive diet such as heart disease or diabetes. Furthermore, women report not being “heard” by doctors, extending the time until diagnosed (Chapter 4). We are often met with suspicion, accused of being faddish, or exaggerating our needs. We are subjected to a host of attitudes that reinforce this behavior and that cause us to feel like we are taking risks in our efforts to gracefully navigate life.

It’s Actually Common

Awareness of gluten sensitivity is growing. As we age, many reach the threshold of no-tolerance and experience an onset of chronic physical conditions. Some never associate their maladies with their diet, but those who do usually make adjustments. Gluten sensitivity spans all ages, classes, and races (Fasano & Catassi, 2012), making it unclear why American doctors do not lead with celiac disease tests, and why it takes patients an average of eleven years to get a diagnosis (Green & Jabri, 2003). Perhaps it is because celiac disease did not appear in the 1994 reports from either the U.S. Department of Health and Human Services or the National Institute of Diabetes and Digestive and Kidney Diseases (Fasano & Flaherty, 2014). Though it was known in Europe since 1941 (van Berge-Henegouwen & Mulder, 1993), until the early 2000s, U.S. doctors seemed to think that celiac disease bypassed North America (Fasano & Flaherty, 2014).

Commenting on its growing ubiquity, Grain Brain authors declare, “Gluten is this generation’s tobacco” (Perlmutter & Loberg, 2013, p. 64) and one of the “greatest and most under-recognized health threats to humanity” (p. 32). Awareness by medical professionals provides hope to all people whose immune systems treat gluten as a “component of a dangerous bacterium or bacteria…toxic to humankind” (Fasano & Flaherty, 2014, Loc. 638). Certainly, the statistics are compelling; however, gluten-intolerance is still under-diagnosed.

Let’s face it. It’s a hassle to be properly diagnosed and can be a burden to live with. But diagnosis doesn’t have to be a social “death sentence.” This book is an attempt to help with the social aspects of living with food sensitivities. Understanding is the first step. Previous chapters identify the cultural constraints that make us feel isolated and subjugated from mainstream culture (Chapter 1 and 2). Next, we examine “vexing venues” (Chapter 5) and ways we can take action to move from feeling excluded to being included. We see how we go through the Big (homeostatic) Shift, enabling us to have confidence in our lifestyle choices (Chapter 6 and 7). We now have empowering language so that we can conduct life gracefully (Chapter 8). Finally, we expect respect and compassion from others (Chapter 9). Another way to be empowered is to be aware of the laws in our country, such as understanding our rights under the American Disabilities Act, the subject of this chapter.

Laws (are supposed to) Mandate Behavior

Though this book does not dwell on the legal aspects of celiac disease, it is paramount to understand our rights to force compliance and to unite to expand the law’s definition. Visible disabilities such as impaired mobility or vision are covered under the American Disabilities Act, requiring accessibility in public pathways. Invisible disabilities such as diabetes, multiple sclerosis, lupus, and cystic fibrosis (ADA, 1990) carry the expectation that they will also be accommodated. Similarly, celiac disease and food allergies were added to the American Disabilities Act in 2012 with caveats when college students who felt their needs were not properly addressed, took action.

Students with celiac disease and food sensitivities at Lesley University felt excluded and discriminated against because they were not able to fully enjoy the food service accommodations without fear of being cross-contaminated when purchasing the school’s mandatory meal plan. An ensuing lawsuit between Lesley University and the Justice Department determined that Lesley must provide gluten-free foods in its dining halls for students who have celiac disease or food allergies (Justice.gov). Further, celiac disease was deemed a disability under the American Disabilities Act (DOJ, 2012). The settlement also required Lesley to develop individualized meal plans, provide safe zones to prevent cross-contamination, disclose ingredients of foods, and pay $50,000 compensatory damages “to previously identified students who have celiac disease or other food allergies” (DOJ, 2012). Students attending this university now experience inclusiveness because several gluten-free selections are available in dining halls. The meals are prepared in a “clean” allergy-free space in the kitchen. Since the 2012 lawsuit, Lesley University has become a model of celiac disease inclusivity, providing a kitchen free of allergens, offering the foods requested by students, listening to students’ needs, training staff on safe handling, and cross-contamination practices (Schilling, 2015). This landmark case influenced the outcome of a similar suit against Rider University in 2019 where students with similar complaints as those attending Lesley were rewarded with inclusive accommodations on campus (DOJ, 2019).

ADA and the School Venue

The American Disabilities Act does not detail specific residency standards, however Title II states that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity (ADA, 2012).” This means that if a student attends a school that receives federal funding (and most do), they are entitled to the rights stated in the American Disabilities Act. But because it is vaguely written, some institutions offer gluten-free dorm rooms, while others require celiac disease students to live in an apartment off campus. Sarah (#31) describes how the school’s staff met with her to figure out a solution (Chapter 3). Though intended to protect her from cross-contamination, the ensuing plan caused her to experience a lonely first year in the school venue because she was forbidden from entering dining halls and other food-events such as college pizza parties. She suffered extreme isolation that prevented her from bonding with her fellow students.

When universities require students living on campus to purchase a meal plan, it can create a burden for students trying to eat safely. For example, student and celiac disease sufferer Hannah Smith ( Smith v. University of Maryland, 2020) was forced to purchase a meal plan and alleges that her university served her gluten-containing food three times, despite asking whether it was gluten free. On one occasion, a campus staff member “berated Smith and served her blackened toast for making a complaint” (AP, 2/24/20). On another occasion, Smith was assured that a popular breakfast cereal containing wheat was gluten free ( Smith v. University of Maryland, 2020) and then for lunch, served her soup that contained barley. The university refused to refund her for the cost of her meal plan when she moved off campus the next year, so she sued. In the heartbreaking complaint prepared by Smith’s lawyer, it says the honor student after consuming the food, “vomited so intensely that blood vessels throughout her face burst. She experienced brain fog, difficulty walking, uncontrollable vomiting, and rib pain as a result of projectile vomiting. The impact of this incident lasted for weeks.” Over the course of the semester, she developed dermatitis herpetiformis. Further it says, because of these incidents, “she could not maintain her grades due to constant illness” caused from becoming sickened by the gluten-containing foods. Finally, it summarized, “Smith suffered physical, emotional, and financial harm as a result of the Defendant’s conduct” ( Smith v. University of Maryland, 2020). Ultimately, the suit was dropped.

The position of the school in this situation enacted the I-know-best, gluten-doubt, and the able-body biases , despite Smith’s father’s attempt to educate and ensure his daughter had safe fare. The kitchen staff did not ever seem to embrace Smith’s serious requirements with their actions of repeatedly exposing her to gluten (while assuring her the foods were safe). This lawsuit very disturbing because the repeated efforts of Smith’s father did not yield success. It implies that we are truly at the mercy of the willingness of those in charge when we are in any kind of institution or situation where we have to rely on others to feed us.

Flexible guidelines in the American Disabilities Act allow colleges to work with what they have in order to accommodate student’s needs. Sometimes arrangements instill inclusive behavior, and other times they result in unintended consequences such as isolating a student, or dependence on non-compliant kitchen staff. It comes down to training everyone involved and being dedicated to working together to accomplish the goal of providing a safe meal to the student. When the Lesley case mandated that celiac disease and food allergies were included in the American Disabilities Act, it was hoped that there would be a ripple effect to make it safer for our community to dine in restaurants. Though it has improved some situations, the American Disabilities Act contains exceptions for restaurants.

American Disabilities Act and Restaurants

Nearly every participant commented on how they were afraid to eat out because of inconsistencies in compliance. Not feeling safe to eat restaurant food was by far the reason many felt isolated and excluded from social gatherings because of their disease. Chapter 9 details strategies for restaurant eating. Here, let’s look at the laws about celiac disease as a disability. The American Disabilities Act falls short when it comes to restaurants, because if a patron’s request “alters the nature of the goods” the restaurant does not need to comply (ADA, 2012). This means the amended American Disabilities Act does not apply in the same way to restaurants as it does to institutions. Assuming you are properly diagnosed, you can demand a gluten-free meal at federally-funded institution but you have fewer legal rights in a restaurant. Restaurants can answer questions about ingredients and omit or substitute according to a patron’s request but they do not need to provide “different foods to meet particular dietary needs” (ADA, 2012). As we have heard from participants, this causes every restaurant experience to be unique, depending on the commitment level and knowledge of the staff. If restaurants do not want to “alter the nature of their goods” to comply with gluten free guidelines, they can refuse to serve those with celiac disease and food sensitivities (U.S. Fed News, 2012). Consequently, this continues to make restaurants a “vexing venue” because they are still not required to offer safe gluten free meals. Some restaurants have conscientious staff, but others do not. Furthermore, a restaurant that is compliant one day may not be the next because standards vary by state, by restaurant, and by servers and chefs. The Gluten Intolerance Group of North America’s Gluten-Free Food Service program provides food service providers with guidelines to be designated as a Gluten Free Safe Spot (gffs.org). This kind of training throughout the restaurant industry would ensure consistency. This website also provides information on restaurants, schools, hospitals and senior facilities who have attained the Gluten Free Safe Spot designation.

Trusting the server and the restaurant to comply is often an act of faith. Just as when we travel to another country, we represent all Americans, when we ask for a special meal in a restaurant, we are “representing” all of those who have celiac disease or food sensitivities. When restaurants get it “right,” participants describe how they praise the staff, often calling over the manager to thank them for accommodating our needs. Positively reinforcing good behavior might help the next person who asks for a special meal. But sometimes that backfires. Liza (#68) reported an incident when she asked the waiter for a gluten free, dairy free selection and the waiter said, “Not another special need! You should have heard how the lady at that table over there ordered. She even had a card with all of her requirements on it for me to give to the chef.” The waiter did not provide Liza with a meal she felt safe eating. She did not feel he listened to her needs because the salmon she ordered cooked “dry” came with some kind of brown sauce she was afraid to eat. Participants voiced they are careful not to appear too “demanding.” It is a slippery slope because we have to trust others to believe our needs and if we are “glutened,” we pay the price of being ill.

Those with celiac disease who have been sickened from eating in restaurants previously may be less apt to trust establishments that promise gluten free selections. This was the case involving a boy who had celiac disease and who brought his own food on a school field trip to Colonial Williamsburg. He and his 60 classmates were planning to be entertained in the18^th century style in a restaurant (Marimow, 2019). When it came time for the meal, the boy was told that the museum restaurant had a “no outside food” policy and said the he would need to eat the food prepared there. The father explained that on other occasions, the boy had been “glutened” in restaurants, which is why he brought his own food. The restaurant stood its ground and the boy and his father ate outside in the rain, away from his classmates. The father sued for discrimination under the American Disabilities Act (Hackman, 2017). The restaurant claimed that they offered the boy a gluten free meal and did not require him to leave, and that consuming “outside food” in their restaurant violated health regulations (AP Press, 5/31/19). A court found that the restaurant had previously made exceptions to the “no outside” rule, and because the child needed a safe meal, bringing his own food was considered “reasonable.” Further, his request “did not alter the nature of the restaurant’s services” (Boyns, 2020). A federal appeals court found in favor of the lad.

State health departments often do not allow food brought from home by patrons to be heated up in restaurant kitchens because the restaurant assumes liability if they handle outside food. If you elect to bring your own food to a restaurant, ensure that it does not require special handling and refrain from asking the restaurant staff to handle it. Consider carrying a letter from your doctor stating you require a special diet (Chapter 9). Restaurant policies and state policies on outside food vary. It is a tricky business. While we want to show gratitude for restaurants that are avoiding able-bodied bias by offering gluten free and food sensitive selections, we are also relying on individuals who may not fully understand the plethora of ingredients that indicate gluten. For example, Todd Serlin became sickened from consuming French onion soup at a restaurant at the Grand Canyon in 2019 after being assured several times that it was gluten free (AP Press, 4/2/19) illustrating the I-know-best attitude on the part of the restaurant personnel. Another lawsuit claimed that those with celiac disease experience discrimination when a restaurant charged $1 more for gluten free provisions, and didn’t charge for peanut free or vegan requests (Hackman, 2017).

We appreciate restaurant’s efforts, but often when we disclose we have celiac disease, we are sometimes warned not to consume the gluten free foods. For example, several pizza chains offer gluten free crust options, but issue the caveat that even though they take precautions, foods may be cross-contaminated because they do not have a strictly gluten free environment. It comes down to liability. I used to frequent a Mexican restaurant where I could get a salad and a piece of grilled fish. One day, when I ordered my normal fare, the manager came back to my table and presented me with a laminated disclaimer. It said, “We are not liable for your food allergies. If you consent to eat the foods we prepare for you, and you become sickened as a result, we relinquish all liability.” What a way to start a meal! First of all, I was the only one at the table that got the laminated disclaimer, so I felt embarrassed as my companions inquired about it. Also, I really didn’t want to risk eating anything there after they presented me with “legalese” to let them off the hook. I want to be reassured, not disclaimed. When my food came, I didn’t enjoy it. It was my last meal there. Can they just disclaim their liability like that? If the restaurant in the Grand Canyon present Serlin with a similar card, would he have had a claim against them when sickened? According to Craig, restaurants assume liability when consenting to provide a gluten free meal, causing some to take out insurance policies in case of slip-ups (Craig, 2012). Does the disclaimer create a loophole in the law? Restaurants continue to be a challenge for us because there are no standardized guidelines mandated by the government for them to follow. Until the American Disabilities Act removes the caveats, every restaurant outing poses risk for those of us with celiac disease or food sensitivities.

Jean’s Story – A Restaurant in Dallas

Dear Reader, I wish you could have been there with me to share this delightful meal! About ten years after being diagnosed and completely gluten free, the Lone Star Gluten Intolerance Group of North America asked me to speak at one of their meetings. They were so nice! Kay welcomed me into her home with open arms. I spent the night in her home and the next day she drove me to the venue where the group was meeting to hear my speech. After the speech, several group members took me to eat in a gluten-free restaurant. Everything on the menu was safe to eat. I don’t think that restaurant even used dairy products. I looked at the menu and instead of figuring out how I could get a salad with nothing on it to pick at, I looked at all of the selections with the knowledge that I could actually indulge in the meatloaf with mashed potatoes, the chicken fried steak with okra, or the Rueben sandwich. It was positively heavenly! It reminded me of the early part of my life when eating out was a daily activity. Back then my coworkers and I would plan our elaborate lunch schedule around various restaurant offerings. But after being diagnosed, I only went to restaurants to be sociable, often not even eating the salad, but rather cutting it up and pushing it around my plate. But at this glorious restaurant, I ordered fish and chips with coleslaw and gorged myself on that heavenly food. Oh, the crunchy batter on that light, white fish. Mmmm the crisp French fries and the amazing taste combinations when paired with the catsup and apple cider vinegar. The others around the table were indulging in other oral delights. They explained that this special restaurant was one place where they all felt safe and they ate there every Saturday at lunch. The cleaned plates were cleared and the waitress asked us what we would like for dessert. Dessert! Wow! I only ever have berries nowadays. What a treat! I ordered a lovely lemon cake with lemony icing. It was one of the most wonderful meals I can remember eating. I want to live in a world where I can order from menus like that again! Thank you to the Lone Star Gluten Intolerance Group for giving me such a fond memory, and especially thank you to that restaurant. (Sadly, that fine restaurant is no longer in business.) Let’s work together, so we can all eat in restaurants without worry again!

American Disabilities Act and Institutions

The inclusion of celiac disease in the American Disabilities Act as a result of the 2012 lawsuit requires institutions like colleges, hospitals, prisons, and universities to comply when meals are prepared “in house.” For institutions, the ruling mandates that those with food allergies, non-celiac gluten sensitivity, and celiac disease can provide grocery lists to food providers who must be trained on safe practices. It mandates that allergen-free meals can be pre-ordered; and that those with celiac disease or food sensitivities will be provided a designated area to eat and to store their food. However, private institutions such as elder care facilities are not required to comply (Chapter 2). Title III of the American Disabilities Act does not allow employers to discriminate against, or not hire, a person with celiac disease if they are otherwise qualified. It requires that employers who offer meals to employees provide gluten free alternatives for those with celiac disease or food sensitivities. It states that emergency services such as safe shelters or institutions such as jails must offer gluten free meals, and it allows a person with celiac disease to bring foods into places serving foods that are not safe. There are several delivery services that cater to various food allergies (Healthline, 2023).

The American Disabilities Act does not require hospitals to provide gluten free pharmaceuticals. I had the misfortunate of being involved in a hit-and-run on the highway. I was taken to the hospital in an ambulance and was in considerable pain. My sternum was cracked. The staff at the hospital could not give me pain medication because they could not guarantee me that it was gluten free. It took me an entire miserable day to track down safe medicine (using the Internet and coordinating with my doctor). This was a terrible experience, and one that simply has to change. The celiac.org organization works to present legislation for things like this. The change to the American Disabilities Act to include celiac disease is a positive move, but it needs to be broadened to include all public places, restaurants, pharmaceuticals, etc. modeling how those who are physically disabled are accommodated.

Here are some proposed amendments to the American Disabilities Act we could suggest to our Congress representative, which would go a long way toward expanding our accessibility:

1. Restaurants would be required to list the ingredients of every dish, either on the menu, or by request. (That would help those with food sensitivities to determine for themselves what is safe, rather than relying on everyone they ask to know all of the many ingredient names that can mean gluten, dairy, or other allergens.)

2. Restaurants would be required to follow the safe-practices guidelines provided by an organization such as the Gluten Intolerance Group of North America (gluten.org / gffs.org) to eliminate cross-contamination, and to properly train restaurant staff. Furthermore, they would be required to publicly post their safe-practices certification in a place visible to patrons.

3. Restaurants would be required to offer several pre-cooked, frozen meal options prepared in an offsite, gluten free certified “safe” kitchen that would just require heating (in the packaging to prevent cross-contamination). That pre-cooked meal wouldn’t require any alterations or substitutions in the regular fare a restaurant offers, but it would ensure that everyone with celiac disease or food sensitivities would have something they knew they could eat. (This may not be optimal, but at least those with celiac disease would be assured of something to order when they go out.)

4. Pharmaceutical companies would be required to prominently disclose all ingredients on the outside label (in plain English, not in medical terminology) and which known allergens the product contains. Ingredients would be specified in each lot, so rather than saying “starch,” label the exact starch used (corn, potato, wheat, rice, etc.).

5. Food manufacturers would write ingredient labels in plain English. For example, if the ingredient is “maltodextrin,” the label would be required to say whether it was derived from corn, rice, potato starch, or wheat.

American Disabilities Act and Other Disabilities

The National Institutes of Health estimate that there are approximately 3.2 million visually impaired Americans (NIH, 2018). Americans over the age of 15 in a wheelchair number 3.6 million (U.S. Census, 2012). The American gluten-sensitive population sums 20 million conservatively (Fasano and Catassi, 2012; Fasano et al., 2015), including three million people with celiac disease (Fasano et al., 2003) and three million with non-celiac gluten sensitivity (Uhde et al., 2016). In fact, those suffering with gluten sensitivities outnumber individuals who are visually impaired or in a wheelchair combined; yet, the model used to accommodate the visually and mobility impaired has not been extended to those of us with celiac disease or food sensitivities. If laws were changed to require accessibility to accommodate the needs of those with gluten sensitivities such as amending the American Disabilities Act; similar to the “bubbles” installed at crosswalks across the country for the vision impaired, swimming pool lifts, and ramps in public buildings for individuals in wheelchairs, those with celiac disease would be able to safely navigate aspects of life.

Taking Action

A peaceful organized effort may bring attention to our need to be accommodated. This starts with unification, via gluten-oriented organizations, social media, or community activities to gain nation-wide awareness. It requires that we use similar language such as the ideologies and cultural constraints defined in this book, uniformity in how we communicate our requests in public places, and advocating education, respect, and compassion in our daily lives. Just as those in wheelchairs can cross streets and access public buildings, it is my hope that this work can influence positive change in the celiac community. Followers of the gluten free diet band together, perpetuating their beliefs that they can cultivate a healthy body and rid themselves from disease through diet. Organizations form to educate and change laws. United, devoted dietary followers create massive awareness. In the same way that other peaceful demonstrations have brought attention to the oppression of others, perhaps a campaign that develops the notion being aware of #glutencentric introduced in the last chapter would bring light to our plight, and possibly affect positive changes.

We now have a hashtag to “call out” those in the media who ridicule our disease. Just as we may incorporate the catch phrase such as #glutencentric to signify our gluten free lifestyle, we may also develop a catch phrase to bring attention to celebrities who use gluten as the butt of jokes. How about #glutenbutthead? Perhaps doing this on social media would affect a positive change in the global attitudes. It seems ridiculous that we’d have to do this. People with other diseases don’t have catch phrases to be taken seriously, but it seems we need one since “gluten” mocking is consistent in TV scripts, in newspapers, and a subject for comedians.

Next, I want to talk about a final cultural constraint that revealed itself in my study. Even though I gave you a sneak peek in Chapter 8’s summary, I saved this one for this final chapter because it has a happy ending (with some hopeful diagnostic tests on the horizon). Many participants observe that family members have symptoms they associate with celiac disease, and when they encouraged them to seek medical help, they refused. This was described so frequently that I determined there is another cultural constraint prompting this behavior. It’s the yours, not mine stance.

Yours, Not Mine Stance

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 when a family member is diagnosed. However, there is a phenomenon I have observed from analyzing the interview data when family members resist seeking a medical opinion. Recall the lady I met in the pet shop who described her niece’s diet (Chapter 1). When I asked her if the family was following it, she said, “None of us are going to follow that diet.” Considering that her niece was diagnosed with celiac disease, there is a strong likelihood that someone else in that family had it too – and should be following the diet. But that family elected to make the niece feel like the odd one out. This is an example of the yours, not mine stance where family members treat celiac disease as “your” disease, not “mine.”

Some people in my study report cooperative family situations where everyone “embraced” the gluten free diet and worked together to help the member with celiac disease. But many describe how immediate and extended family members treated them like it was something unique to the diagnosed individual—not something they could also have. This caused personal strife, as well as a reluctance to recommend that symptomatic family members get tested. When people first hear of something they fear, one coping mechanism is to protect themselves by separating from and even denying the situation (Manoogian, Harter, & Denham, 2010). It is human nature and a primal survival tactic. Understanding the yours, not mine response as a normal knee-jerk reaction helps us to comprehend why family reacts the way they do when we are trying to be helpful. This poses 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 the yours, not mine mentality.

William (#30) says, “We can spot them,” referring to how those diagnosed with celiac disease can see the symptoms in other family members. 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, rosacea on the nose, and gastro-intestinal issues (Fasano & Flaherty, 2014), to name a few. When we mention it might be gluten causing the problems, the response is often, “It can’t be, I’ve eaten it all my life!” When people say that, I want to say, “I rest my case!”

It is fascinating how food operates in multiple dimensions of life. In the case of the individual, in the “body battleground,” (Chapter 4) food choices cause harmony for those who are aware of what makes their body thrive, or havoc for those who don’t. Like many interviewed who associate their physical maladies with what they eat, I see it on other people. It presents a constant dilemma for me to decide whether to say something, or to keep my big mouth shut. Usually, I say something and wish afterward that I didn’t. Nobody wants to be told your “truth” even if you’ve spent decades learning it, and suffered for years in the process. Their attitudes, in general are: yours, not mine . We don’t want our boats to be rocked. We want to eat whatever we want, with no consequences. It takes time to come to terms with a restrictive diet.

There are actually over 200 symptoms of gluten intolerance (Wangen, 2009, p. 37). For example, Dustin (#46) reports, “My teeth started falling apart. They had cracks and cavities. The dentist said they were ‘demineralizing.’” Vivian (#51) says, “I had low bone density and lots of fillings in my teeth.” Cara (#53) says, “I had a lot of problems with my teeth, brain fog, joint pain, headaches, migraines, kidney problems, skin rashes, and hair loss.” 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.

For example, remember Emery (#45) when 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 (Chapter 5)?” As mentioned before, that illustrates gluten-doubt , but it also shows the yours, not mine mentality found in many families. 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). By incorporating the yours, not mine stance family members can erect a shield to protect themselves or loved ones from facing the inconveniences associated with celiac disease. Recall Ava’s (#7) daughter who exhibits symptoms of celiac disease, but refuses to be tested because she (erroneously) believes it “skips a generation” (Chapter 5). This is a convenient yours, not mine adaptation that keeps the mother’s disease compartmentalized as “hers” and not “ours.”

However, when family members embrace our disease, we have a better chance of surviving. People suffering heart problems tended to survive longer when spouses referred to the problem as “ours” versus “yours” (Rohrbaugh, et al., 2000, p. 781). People with a disease who live in families who accept the it as “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 yours, not mine seems to be an initial response while inclusiveness evolves over time with familial acceptance. With a compassionate understanding that the yours, not mine attitude is often an initial survival tactic, we may eventually be able to gently urge loved ones to get tests that may ultimately save their lives. 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 go to a bona fide doctor to get tested. Though, as we know, it may send them down a difficult path because as many respondents reported, they were initially misdiagnosed.

Hope on the Horizon

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). Assuming family members eventually come around, to want to understand the cause of their symptoms, what do we say? We may suggest they go to their doctor for some “tests,” but considering that many doctors are misinformed about celiac disease, they may be sent away with “negative results.” Many doctors still believe celiac disease is rare, but because of the work of luminaries such as Dr. Alessio Fasano, Dr. Peter Green and others, we now know that gluten intolerance is fairly common, and that customary serologic testing may not be conclusive.

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 yours, not mine effect because family members may undergo what they think is comprehensive testing, but may not have been properly assessed. For those 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 routines. Stool tests and several home tests available now to test whether you have the genetic (HLA) marker, or if you have the antibodies. 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. Other tests are now available for early detection such as a fingertip blood test has been developed to screen first-degree relatives for celiac disease as a first pass (Popp, et al., 2013). It tests for IgA class and EMA antibodies. An 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). Our community had high hopes for the drug called larazotide (also known as INN-202 and AT-1001) studied on those with celiac disease (CDF, 2019). However, the trials ended in Phase 3 (9 Meters, 2022; CDF, 2019). Another treatment researched uses bifidobacterium probiotics to assist the body to “break down gluten and potentially tame the body’s immune system” (Klemenak, 2015). Between new diagnostic procedures and pharmaceutical developments, there is hope!

These early testing methods are exciting developments for family members who may have tested negative to customary tests, but who still exhibit symptoms. Medical diagnostic inconsistencies contribute to the yours, not mine and gluten-doubt attitudes. 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.

Summary

The purpose of this work is to validate the voices of people living with celiac disease and non-celiac gluten sensitivity to create an awareness of the cultural constraints that influence thinking about gluten sensitivities. Additional outcomes include offering best practices to enhance social interactions for this community and broadening the current definition of celiac disease accessibility in the American Disabilities Act. Scholars have considered the cultural aspects of food and studied the effect of hidden disabilities on quality of life. However, few have synthesized the impact of living with food allergies on cultural and social aspects of everyday life. The degree of ease with which those diagnosed with celiac disease navigate life seems dependent on how reactive their bodies are. Those who are asymptomatic can blend into the crowd, take a few risks and eat gluten free meals at restaurants. Contrastingly, those who are highly sensitive often do not go out at all, and if they do, they bring their own food, or ask a lot of questions before consuming foods.

In the other venues, we see similar attitudes where long-held “truths” remain intransigent. Our new awareness of the cultural constraints presented in this book, along with the venues where these attitudes are constantly challenged empowers us. Now we have language and tools in our lexicon to broach a discussion to bring about a different awareness. Even if we don’t have a conversation, it helps us to have a way of thinking about it so we don’t feel victimized, isolated, or at the mercy of others to ensure our health and safety. Moving forward, our newfound knowledge, willingness to advocate our needs, and determination can positively transform our lives.

Jean’s Redemption

After I was diagnosed and began to research celiac disease, I realized that the constant stomachache that made me fear pregnancy and that my previous abnormal pregnancies were likely caused from the undiagnosed disease. Just as inappropriate food choices may have contributed to my father’s early death, consuming gluten all those years before being diagnosed cost my husband and myself a family. In parts of Europe, children are assessed for celiac disease between the ages two and four years old (Popp, A., & Maki, M., 2019). Here in the USA, we’re lucky to be diagnosed by middle age, and often misdiagnosed prior to an accurate diagnosis. If I had been diagnosed when I was younger, I would have been rid of the symptoms, free of pain, and probably had a body that could have endured a pregnancy. Life may have turned out completely different for my husband and me.

But my story is one of redemption and transformation. By eliminating the foods that are poison to my body, I thrive and remain grateful for what I have, living an alternative path. It led me to start a company called Alternative Cook, LLC (alternativecook.com), to produce instructional video streams, cookbooks, courses, and consulting. Through all this, I realized that celiac disease is a social issue. My passion for this cause led me to pursue a PhD and carry out the study and write this book. It is my sincere hope that I can have a positive influence on those who live with this disease.

Discussion Questions:

1. What amendments would you propose to the American Disabilities Act to enhance our restaurant experience?

2. How can we unite to change the American Disabilities Act to ensure we can go out to eat safely in any restaurant we desire to patronize?

3. What examples can you provide of the yours, not mine stance?

References in Chapter 10

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Copyright © 2021 by Alternative Cook, LLC

All rights reserved.

Published in the United States by Alternative Cook, LLC

LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION Data

Names: Duane, Jean Elizabeth, PhD, Author.

Title: Gluten-Centric Culture, A Commensality Conundrum

Description: Centennial, CO: Alternative Cook, LLC, 2021

Identifiers: ISBN 978-0-9787109-2-7 (hardcover)

ISBN 978-0-9787109-3-4 (ebook)

Subjects: Social Science, Food Sensitivities, Communication Studies, Celiac Disease

Alternativecook.com

Dedication

This book is dedicated first to my husband, Mark my champion in life. Thank you for giving me so many enriching experiences. Second, I dedicate this book to the survey respondents and interview participants. Thank you for providing courageous examples of life with celiac disease and food sensitivities. Your interviews made me feel less alone, and gave me the confidence to forge ahead with this book. I think of you often and am so grateful that we can unite as a community. It is my sincere hope that this book can break down some of the social hurdles by bringing light to them. Creating awareness and having language to describe it are the first steps to making a positive change.

Acknowledgements

I’d like to take a moment to thank Heather, my editor for being my muse and for helping me to find and express my “voice” throughout. Thank you for your incredible patience as I learned the art of writing. I have loved our sessions and your insight! Thank you to Scott Adams at celiac.com for allowing me to post the survey, and to write about social scenarios these past few years. Thank you to my sister, Becky for your friendship and support. Thank you to my friends, Wendy, Marcia, Lori, Laura, Barbara, Jana, Kelley, Doreen, Sandy, the Literari Sisters, and my philanthropic Sisters who have given me support throughout. Thank you to my doctoral committee, Christina, Kate, Beth, and Nicole.

I love you all, and thank you for your kind, loving understanding as I struggled with the disease to navigate life.

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