Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together

Celiac.com 04/15/2022 - This is the continuation of the book Gluten-Centric Culture, the result of a nation-wide study conducted by Dr. Jean Duane. Chapter 1 opens with the question: How do I gracefully navigate social scenarios with people I love without alienating them or compromising my health? Chapter 2 studies the different cultural norms perpetuated by religious beliefs, government, schools, rules of etiquette, the media, etc. to understand why there seems to be resistance when we disclose to people we need to maintain a gluten-free diet. Chapter 3 examines venues where the long-held “truths” discussed in previous chapters collide in the doctors office, at the grocery store, at school, and at church. Chapter 4 segues to how women’s bodies are particularly challenged and scrutinized in our society. The present chapter looks at family and extended family situations where food sensitivities sometimes interfere with our ability to lovingly interact.

The first step to change is to understand the situation. The scenarios from Dr. Duane’s nation-wide study illustrate the many ways that deeply seated beliefs must be re-examined when diagnosed with a disease or living with food sensitivities. The next step is to assign language to call out behaviors and attitudes that do not serve us. The language presented in this book under the main heading of “ideologies” including sacred bread creeds, gluten-doubt beliefs, reluctant tolerance practices, I-know best attitudes, etc. (illustrated in previous chapters) helps us to communicate how our gluten-centric culture is the reason a gluten-free lifestyle is challenging in our society. Ultimately, those living with restrictions take initiative to develop functional strategies, to change attitudes in order to thrive. That is the subject of forthcoming chapters that include inspiring stories of transformation from study participants.

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Figure 5. 1 – Already really annoying
(Licensed with permission from Cartoon Collections.)

Jean’s Story - A Thanksgiving to Remember

One of my long-time friends invited my husband and me to join her, her husband, her daughter, and her daughter’s children for Thanksgiving in Dallas. There was a time when we all lived near each other and shared in daily life. I looked forward to seeing them again and felt very grateful for being included. My dietary needs had been discretely addressed by my friend’s daughter, the hostess of the dinner, in a series of thoughtful emails inquiring what would be safe for me to eat. I was reassured with her concern and did not bring my normal array of foods. I was further encouraged when I arrived for Thanksgiving dinner to see that my friend’s daughter had set aside a plate of greens with sliced apple and raw walnuts on top for me. It was a compassionate gesture, and I felt included and loved.

The husbands of the younger set decided to forge a new Thanksgiving tradition using the turkey fryer in the backyard. They removed every food they could scavenge from the refrigerator and prepared it to fry. A bag of flour was plunked on the counter, as guests eagerly dipped Oreos, macaroni and cheese, ice cream, pickles, baby food—anything they could find—in the flour. A white dust covered the counter where the Thanksgiving foods were sitting, and flour particles were visible in the air. My salad sat uncovered a few feet away. In that moment, all of the preparations made to provide a “safe” meal for me were erased. My salad was tainted with flour dust, as was the air I was breathing in that warm, cozy kitchen. What had moments before felt like a loving, compassionate environment suddenly became adversarial, with me fighting to avoid cross-contamination. I faced a conundrum coupled with that sinking feeling, realizing I was quite hungry – the bacon wrapped almond-stuffed dates that I risked eating (a risk because they were baked in an oven that was also used for baking gluten-containing foods) had long worn off, that there was literally nothing safe for me to eat for dinner. Everything was contaminated with flour dust. I didn’t even have the usual peanut butter energy bar in my purse to sneak-eat in the bathroom.

The event was held in my friend’s daughter’s home, where I felt welcomed, but with whom I really hadn’t spent much time. Though she had good intentions, my plight was the least of her concerns. Nearly nine months pregnant, she was trying to entertain a group of 26 people—a group who was developing fun new traditions. The last thing she needed was a needy “mom-friend” asking for special dispensation.

The majority of the guests were enthusiastically rolling everything in flour and plopping the blobs into the fryer. My feelings shifted from inclusion and love to isolation and fear. Worse yet, even remaining in the general area where the party was taking place posed danger for me, as I risked breathing airborne flour. I had recently learned that I react to airborne flour from sitting in a pizzeria for two hours. Leaving the scene would be further isolating, making me feel like an outsider. And wearing a mask (I had one in my purse) would be humiliating. (This was before COVID.) So, I moved to the adjoining den where the football game was on TV, pulled my turtleneck over my nose and discretely breathed through it. During dinner, I pretended to eat, switching plates with my husband when nobody was looking, so it appeared that I ate the food reserved for me. I starved until we got back to the hotel late that evening and ate from my “safe” foods before retiring.

Cultural Practices at Play in this Scenario

Several ideologies/beliefs caused my discomfort at that Thanksgiving setting. First of all, the reluctant tolerance practice was at play as my friend’s daughter tried to accommodate my needs. She had a house full of people she was cooking for, while she was very far along in a difficult pregnancy. I realize that I am projecting the “reluctant” part on her because she did try to accommodate my needs, but I felt like an inconvenience with my restrictive dietary requirements. The able-body bias was in play as the younger set got the flour out and started coating everything in the fridge, sending clouds of flour dust in the air. They didn’t give a wit (and probably didn’t know) about my severe reaction to flour. Further, they likely wouldn’t have believed it, since they might have perceived it as an oddity. My friend’s daughter’s kitchen became unsafe for me when I was put in harm’s way having to breathe the dust. As a friend trying to fit in, it wouldn’t have been acceptable for me to say anything, plus I didn’t want to rain on their parade or to make a scene. Absence of agency was also a factor in this scenario. As one of the older set in a place where the young new families were establishing rituals they would likely reenact for years to come, I didn’t want to be the “weird friend” that they seldom see asserting myself to demand a safe environment. As it is, we stayed in a hotel rather than in the home of a gluten-consuming family—a safe move for me, but an isolating move in their eyes. Exclusionary etiquette rules were also in play. I couldn’t very well hide in the other room and be anti-social. The whole point of us being there was to share with everyone, not to cower from the festivities. Nor could I shun the uncovered food set aside for me in such a loving manner. Finally, and this reveals my inner insecurities, but the dietary discretion practice was also activated. I was very aware of my dietary disabilities, and how it made me different from everyone else who appeared to be able to eat anything. The whole situation put me in a quandary, because I didn’t want to assert myself. And because I hadn’t yet come to terms with my disease enough to do something constructive to deal with it, I suffered through in hungry silence.

Commensality – the act of sharing food with others.
Conundrum – a difficult situation with no clear solution.

The Commensality Conundrum

Whenever anyone with celiac disease or food sensitivities is faced with sharing food with others at the dinner table, they must struggle with the question: How do I come to terms with being gluten free with my friends and family, particularly when food and gluten related beliefs are constraining us? Since food is served at nearly every gathering, the commensality conundrum presents itself in every aspect of life. While spending time with family, study participants described additional “vexing venues” or places for potential conflict, such as the immediate family table, the extended family table, restaurants, and even the bedroom! Respondents describe how their food allergies or special diets disrupt family traditions, often triggering ridicule by other family members (Bentley, 2005; Masia, Mullen, & Scotti, 1998). For someone with celiac disease or a non-celiac gluten sensitivity diagnosis, this is particularly complicated because sharing food signifies belonging in family and community (Montanari, 2006). Indeed, individuals with celiac disease or non-celiac gluten sensitivity risk alienation if they do not participate in food festivities or religious rituals (Curtin & Heldke, 1992); or terrible health effects like autoimmune disorders (Green & Jabri, 2003), anaphylactic shock, and even death (Cummings, et al., 2010) if they do. Cherished food rituals shared with family members are challenged when someone has severe dietary restrictions.

The Family Meal is Complicated!

I was asked to make dinner for some of my older friends. Though we agreed on a Mexican themed meal, they called to tell me they couldn’t eat “hot” foods. So, I adapted my signature recipes to use “mild” versus “hot” chilies in the rellenos. I put the red sauce on the side rather than baking it into the enchiladas like I usually would. While sitting at the dinner table, I noticed my companions weren’t eating much. Neither was I. At that time, I hadn’t honed my cooking skills to make alterations. The “mild” flavor adjustments I made to accommodate their taste buds made my signature dishes bland and boring. I felt compromised as a cooked with all those substitutions, and a little irked that nobody raved about the foods I made. This is how other cooks feel, I’m sure, when altering their signature recipes on the fly to accommodate someone with celiac disease or food sensitivities.

When considering the tasks involved in creating a pleasant dinner party, such as “planning, shopping, scheduling, preparing, serving, navigating table interaction, cleaning, packing away, … stocking supplemental ingredients, as well as knowing and accommodating family member diets, preferences, and allergies” (DeVault, 1991, p. 28), the family meal is a “complex social event” (p. 3). Traditional American meals like Thanksgiving dinner regularly include multiple gluten-containing dishes like stuffing, dinner rolls, green bean casserole, and pies. This requires those with celiac disease to inquire about ingredients prior to consuming foods, as described by Stella (# 21):

There are times when I have felt uncomfortable because I feel like I am making other people uncomfortable. We were at dinner and when I started asking questions about ingredients, I could see that others around the table were getting annoyed. I felt like I embarrassed those around me, but I felt uncomfortable about eating unfamiliar foods without asking. I didn’t feel uncomfortable enough to stop; I had to continue to ask my questions, but I felt like I was holding everybody up with my questions, trying to figure out what I can or cannot eat.

Stella could feel the unease among her family members, but had to persist in order to stay safe. This illustrates the ceaseless endeavor that anyone with food sensitivities or celiac disease has to maintain in order to ensure prolonged health.

When a family member is diagnosed with food sensitivities or celiac disease, high-functioning families work together to process the new information and adjust their practices accordingly (Koenig Kellas & Trees, 2006); whereas, dysfunctional families are likely to create a hurtful, vulnerable environment for the ill person (Vangelisti, Maguire, Alexander, & Clark, 2007). Familial dysfunction occurs when members cling to bygone beliefs. They resist changing their own opinions and cause grief to anyone who attempts disruption, as Kaylee (#52) reports. When requesting gluten free foods at a gathering, her sister joked, “Leave it to you to be difficult,” illustrating the reluctant tolerance practice of begrudging compliance and the gluten-doubt belief. Whether harmonious or disharmonious, people living together typically need to cope with the needs of the disabled person or face relationship changes (Frank, 1995). To cope, family members need to work together to revise the “truths” and narratives they tell each other and themselves. Revised stories told among family members help to redefine the experience, creating the prospect of familial functionality. So, rather than saying, “leave it to you to be difficult,” a dysfunctional statement, the sister could have lovingly said, “What can I do to help you eat safely at this family gathering?” Statements like these set the tone for other family members. When it comes to celiac disease or food sensitivities, a family’s degree of functionality plays out around the dinner table, as old beliefs collide with new “truths.”

Restrictive diets can be frustrating for all parties involved and can impact every aspect of life and family culture. Women reported less satisfaction with social aspects of their lives after long-term adherence to the gluten free diet (Hallert et al., 2002). They felt isolated from food-related events and relegated to preparing meals at home for themselves. People with cooking skills can usually adapt to a gluten free diet in the home, assuming other household members cooperate, such as in the case of Kevin (#33) whose wife said when he was diagnosed, “I’ll support you, and we’ll get rid of all the gluten in the household.” In uncooperative households, some celiac disease sufferers succumb in order to fit in and eat the allergenic food, even if it means becoming ill as a consequence. In fact, 40% of people with celiac disease do not comply because it’s too challenging (Jackson, 1985). Family life for the food intolerant can be a hard road because of both the “trial and error” associated with determining which foods cause problems and the social consequences of being different (Nettleton, Woods, Burrows, & Kerr, 2020, p. 303). Both disclosure and deception carry the risk of social stigmatization and alienation from family and friends as reported by John (#2), when he sits down to dinner:

I feel embarrassed, like I’m being a pain in the ass, inconveniencing other people. That’s what I hate the most about this. I think part of the reason for that is because this whole ‘gluten free’ thing is such a fad. Everybody has a story about their college roommate who is gluten free until [he] orders a Caesar salad and [eats] the croutons. So, a lot of people don’t take it seriously.

John feels scrutinized at the dinner table because he feels that many don’t understand that his dietary requirements are life-and-death choices, not a fad. This illustrates both the reluctant tolerance practice and gluten-doubt belief. John’s feeling like a “pain in the ass” is likely from family and/or friends “reluctantly” tolerating or doubting his dietary needs.

Crumbs in the Kitchen

A non-gluten free home for those with celiac disease is similar to an alcoholic working in a bar, or living in a home full of liquor. The threat of succumbing is constant for the recovering alcoholic, causing high levels of anxiety because of the ever-present reminders (Groh, Jason, Davis, Olson, & Ferrari, 2007). Similarly, a person with celiac disease or food sensitivities dodging gluten crumbs or flour dust whenever preparing or consuming a meal can cause ongoing anxiety. When describing food allergies, events triggering anxiety include potential exposure to allergens, and the possibility of having nothing safe to eat (Mandell, Curtis, Gold, & Hardie, 2005). If a person with celiac disease lives in a “hostile” environment, where others continue to eat gluten, this can cause underlying, unresolved anxiety not to mention on-going physical reactions. Further, the manner in which the person with celiac disease processes conflict is significant. Gianna (#50) describes a hostile scenario in her non-gluten-free home:

Oh, I get gluten contamination all the time, especially from my husband. And he doesn’t realize it. He’ll be making a sandwich, and he will grab whatever jelly he wants. He shoves the knife in, spreads it back and forth on the toast and shoves it back in the jelly. So, it is cross-contaminated. That little teeny-tiny bit will bother me. It will make me sick.

Because her husband adamantly refuses a gluten-free household, Gianna will live in a threatening environment and a permanent state of apprehension until she takes initiatives to protect self-health. Her husband’s response portrays the I-know-best attitude to his wife’s needs, resulting in her being sickened on a regular basis. Gianna says his lack of cooperation causes her daily strife. To avoid conflict, she dodges the foods that could possibly be contaminated such as the open jelly in the refrigerator. This scenario also illustrates her absence-of-agency in the relationship because she does not have the power to demand that her husband honors her needs. As a result, she lives with the daily risk of contamination, because she and her husband have not come to a mutually agreeable resolution.

Jean’s Story - Daddy’s Diet

In many families, the father’s dietary requirements become the fare for the rest of the household. My father had his first heart attack at age 55. He endured three bypass surgeries over 20 years. He had stents inserted in the arteries around his heart in between bypass surgeries. On three separate occasions, doctors split open his sternum. Long arteries were extracted from his legs and sewn around his heart, resulting in three-foot-long incision scars, ankle-to-thigh. Recovery from each bypass surgery took six months of rest and physical therapy to regain muscle strength. Over time, plaque would build up in his arteries, and he would start the process all over again. He took all kinds of drugs including beta-blockers and statins, and he regularly put nitroglycerin under his tongue to thwart imminent attacks. Nothing worked until a doctor told us that dietary choices were the cause of his heart disease.

After that, our family became vegetarian overnight. We suffered through Momma’s experiments with soy protein (which came in a milk carton and tasted like cardboard), beans (which she’d never cooked before and we promptly rejected), and egg dishes made only with whites. Despite our grumbling, it worked. Daddy lost weight, began running, and enjoyed good health. But compared to the rich American diet we were accustomed to, the vegetarian menu left us feeling deprived and unsatisfied. To protect Daddy, we identified certain foods as culprits the doctors told us caused his heart to clog. We pinpointedegg yolks, saturated fat, cocoa butter, coconut oil, butter, shortening, whole dairy products, and red meatsand eliminated them from our diet.

My father’s diet was an obsession for us, becoming an emotional jumble of love, and frustration for my mother whose “job” it was to fulfill his dietary requirements. Everything we ate was a surrogate for something else: meatloaf made with turkey burger and oats, rather than hamburger; vegetables cooked in broth rather than sautéed in butter; cookies baked with oil rather than butter. Those were tough years because we all missed the foods we craved. In our case, the father’s needs dictated the household’s diet, an example of how the head of the household tends to have the most agency. And, even in our modern world, food preparation and dietary adherence is often still considered a woman’s role in traditional marriages. Years later, when I was diagnosed with celiac disease, I thought, “Here we go again!” I didn’t want to suffer through another phase of dietary deprivation! Daddy’s diet experience influenced me to attend cooking school and to develop recipes with tasty alternatives.

Patriarchal dietary preferences influence the fare in Ava’s (#7) parent’s home where she observes, “Mom is sick all the time, and she has been hospitalized twice. She needs to be gluten free, and because my dad doesn’t want to, my mom hasn’t gone totally gluten free. She eats half-and-half [half gluten and half non-gluten containing diet].” Ava is certain her mother has celiac disease. Since her father refuses to eat a gluten free diet, her mother feels strongly that it is her duty to cook what her husband wants to eat, and continues to cook and eat gluten-containing foods, thus suffering celiac disease-related symptoms. Further, since gluten free foods are expensive, some families cannot afford to prepare separate meals or don’t have the time. A celiac disease sufferer might decide, for example, that it is easier to comply with her spouse’s desires than fight for change. Many respondents report similar observations, indicating that family members preferred to ignore celiac disease rather than adopt the restrictive gluten free lifestyle. Nevertheless, the burden of compliance often falls on the shoulders of the woman in the household (Crowley et al., 2012). This is true in Robert’s (#12) household. An older gentleman, Robert said that he knows nothing of the nuances of the diet because when he was diagnosed years ago, his wife researched and took classes to learn how best to feed him. Possibly this is a generational phenomena, or perhaps it is a patriarchal attitude, or maybe it is the way his wife shows her love for him. Whatever the reason, Robert felt that understanding food and his diet was his wife’s responsibility. His health or demise is directly correlated to his wife’s ability to finesse a healthy diet for him.

Sometimes children exert higher levels of agency, causing strife in the parent-child relationship, as reported by Ava. She describes a contentious situation with her adult cohabitating daughter, before coming to terms with the seriousness of her diagnosis:

She gets ‘pissy’ and she says things like, ‘God this has nothing to do with me, I can’t bring anything into the house.’ She wants to bring gluten-containing foods into the house to eat with her friends in her room. I had to put my foot down. I said, ‘you guys can’t eat gluten in the house. If you and your friends want to eat gluten, you have to do it at a restaurant, or you have to stay outside. You need to rinse your hands off. Don’t even come in here and touch my doorknob. You just need to leave that crap outside. If you’ve had a cookie that you had in your room, and I come in there and love on you, or if you come out and kiss me, then I’ll get sick.’

Constantly feeling pressure to allow gluten does not cultivate a meaningful relationship, and this negativity can disrupt familial relationships (Arroyo and Segrin, 2013). Ava reached the breaking point, causing discord with her daughter. She describes getting continually cross-contaminated by her daughter’s negligence. The daughter was not taking her mother’s needs seriously. By saying, “God, this has nothing to do with me,” Ava’s daughter demonstrated a non-adaptive yours not mine principle, making the disease “her mother’s” alone. This illustrates how some family members do not acknowledge the hereditary nature of celiac disease. Interestingly, Ava also describes her daughter’s small stature, halitosis, and migraines, which are all symptoms of celiac disease (Wangen, 2009). Ava describes her resolve to require that her “house be the place that [she is] safest,” taking ownership of her safety and her disease – no matter how her daughter responds.

Layla (#65) describes her experience of living with risk of accidental exposure while living with her husband in her mother-in-law’s house. Layla was highly sensitive to gluten and her mother-in-law’s kitchen became a “vexing venue” because her mother-in-law refused to cooperate with Layla’s dietary needs, leaving open containers of flour-containing foods all over. The mother-in-law was highly inconvenienced by Layla’s requests. To avoid the kitchen Layla’s adaptive strategy was to keep her and her husband’s food in her bedroom. She reports, “[My mother-in-law] wanted to have gluten-containing flour in the kitchen. It really concerned my husband and me with having open flour on all of our foods; so, for at least a year, there were problems with how she handled her kitchen.” Here, the mother-in-law exercised a high degree of agency and did not allow Layla or her husband to have a say. She also activated gluten-doubt, not believing that Layla was so sensitive. Needless to say, there was a constant rift between Layla and her mother-in-law.

Conversely, Grace (#17) describes a more cooperative kitchen scenario, and though they both had good intentions, adaptations ultimately had to be made.

When I was first diagnosed, my husband obviously didn’t have to deal with it, so he would still eat his gluten, and it was just too stressful because of the cross-contamination. We had two different toasters, two different jars of peanut butter, two different everything. And then there were crumbs everywhere, and finally we went to a gluten-free household.

Grace describes how she and her husband changed their habits to avoid cross-contamination. After struggles and reaction episodes, they ultimately decided to implement a gluten-free home. This couple quelled Grace’s anxiety by coming to terms with her dietary restrictions through cooperation, together shifting their home-based food practices. The home kitchen and dinner table are prime “vexing venues” for those with celiac disease. But the challenges of gluten free adaptation carry over into all types of relations—even intimate ones.

Jean’s Story - Glutenous Interruptus

I couldn’t get enough of him. His beautiful blue eyes, soothing voice, and confident manner. He was a charmer, anticipating my every need. My favorite flower, a light pink rose he gave me sat next to my place setting. He remembered the drink I enjoyed and ordered it for me. We were at a posh restaurant that had a harp player playing Vivaldi. The music wafted to the candlelit room where our table was. Floor-to-ceiling curtains billowed in the light breeze and we could hear the ocean’s waves from beyond. He was so engaging, asking follow on questions to everything I mentioned. Our conversation volleyed in a give and take with so many common interests. He smiled often and I remember thinking, “I am so happy this man is in my life.” After dinner, we adjourned to a private room. To continue the mood of the restaurant, I opened the door of the balcony to feel the ocean breeze and put on some soft Portuguese jazz. I gave him some bourbon neat and sat next to him on the couch. He moved closer, his face near to mine. I could smell the intoxicating aromas of bourbon, aftershave, and a hint of cigar smoke. I closed my eyes and leaned my head back in anticipation of a kiss. His lips came so close I could feel mine tingling. I could feel his breath as he exhaled gently. Suddenly I remembered that he had eaten a lot of bread at dinner and that his mustache was likely full of gluten crumbs. Abruptly, I got up and said, “I’m really sorry, but before we kiss, you’ll have to go wash your face,” evaporating that intimate moment.

In the Bedroom - Don’t Kiss Me!

If you want to kiss me, wash that beard.
—Beasley, 2011

Couples interact with each other in different ways. “Interactive styles” can determine whether the relationship is functional or dysfunctional (Brown, 2011, p. 119). For example, when a partner does not attempt to understand or incorporate the dietary restrictions of the other, that disengagement ultimately results in relationship dissatisfaction. By contrast, couples that engage in a “cohesive” style of interaction have better outcomes, where both partners participate and understand the dietary requirements (Brown, 2011, p. 113). How couples handle each other’s needs is a harbinger of how their relationship is going. Survey participants frequently reported unhappiness with relationships, when the household wasn’t completely gluten free and cross-contamination was a constant threat. On the other hand, many respondents reported harmonious, cooperative relationships such as Stella, who describes her husband as follows, “He is wonderful. If I don’t ask immediately upon entering a restaurant, he’s the first one to say, ‘my wife needs a gluten free menu.’” Lillian (#58) reports being cross-contaminated while courting her (now) husband from kissing after he consumed beer and pizza. Now, he rinses his mouth and brushes his teeth before touching her.

Contrastingly, for fear of contamination, John says he “won’t snuggle with his wife until after she has brushed her teeth and gargled.” Their intimate encounters have diminished since he was diagnosed because his wife regularly consumes gluten. Eleanor (#20) reports that her husband of 34 years expresses his love and respect by not kissing after he’s had a beer or a sandwich. She said,

My husband has seen me in agony, on the floor. He had known me most of my adult life and has seen me sick and not knowing what is wrong with me. He saw me once being taken to the hospital in an ambulance and he followed the ambulance to be with me in the hospital. So, he is glad that I finally know what is wrong. He is not completely gluten free himself for breakfast and lunch, but dinner, which we eat together, he eats gluten free. He will not kiss me if he has had something that is not gluten free. Like if he has had a beer or if he’s had a bite of a sandwich or a cracker that is not gluten free, he’ll tell me, ‘Don’t kiss me.’

Allison (#35) lives with her husband who continues to consume gluten in the household. When he does, and tries to cuddle with her, she says, “We’re not doing that.” Her husband essentially chooses eating gluten over intimacy. She jokes that it’s his way of saying, “Honey I have a headache.” Gluten anxiety can be the final straw in ending relationships.

Waffles End a Marriage

The stakes are higher than some partners realize because a lack of cooperation and compassion around celiac disease dietary needs can end relationships. When someone feels they have been treated unjustly, in time, they may see this negativity as the final straw. For example, Mila (#10) describes how she attained closure in a dysfunctional relationship with this episode that ultimately broke up her marriage:

Probably the most hurtful thing for me was for years of our marriage, every Saturday morning my husband made waffles. That was the one meal of the week that he made. And then when I needed gluten-free waffles he said, ‘I would never make those.’ In all those years, I thought he was making them for me, and he was really making them for his own idea of what a good waffle was.

Mila’s spouse communicated his beliefs about breakfast waffles and altering ingredients to make them gluten free did not meet his expectations. When she told me the story, the pain in her voice reflected her heartbreak at his hurtful comment. “I would never make those,” still resonates with her, years after their divorce. Here, the absence of agency doctrine is in play. She thought she had more agency in her marriage and the waffle incident made her realize she didn’t. Also, the able-body bias idea is at work in this scenario. Mila’s husband couldn’t be bothered with her special needs feeling that the only kind of waffles worth eating were those that contained gluten. She describes this incident as the straw that broke the camel’s back—the moment she realized her gluten free needs were not a priority for her (now) ex-husband.

Gluten Free Diet Breaks Up “Besties”

Dietary requirements broke up Scarlet’s (#14) 30-year friendship. After enduring many medical tests and years of suffering, she triumphantly shared her celiac disease diagnosis and gluten free solution with her friend. Scarlet was happy and hopeful, but her best friend did not reciprocate; rather, she quipped dismissively, “Oh, well. See if it works.” Scarlet describes how her friend made it sound like she was just trying another fad, ignoring the struggles Scarlet had communicated over the years as she tried to find the key to regaining her health. The friend’s lack of compassion caused Scarlet to discontinue the relationship. Scarlet feels her longtime friend did not try to understand the implications of celiac disease, treating her resolve to follow a gluten free lifestyle as a casual fad.

Jean’s Story - La Guerre on Pain du Chocolate

My friend invited me over for tea on her upper deck garden with a view of Long’s Peak. As we settled in the cushioned rockers, enjoying the ultra blue sky and warm sun, she said, “I went to a French boulangerie and got us pain du chocolate. I know you can’t eat gluten, so I got you these gluten digestive tablets to take before you eat. These pills are supposed to “digest” the gluten so it doesn’t negatively affect you. Isn’t that great?” I know my friend, who I only see every six months because of her incredible life demands, has really gone to a lot of trouble to accommodate me. And how kind that she did that! She has heard me reminisce about eating pain du chocolate while on a trip to Paris, long before being diagnosed. (How I cherish those memories!) And she was trying to recapture that with her beautiful tea array, doilies and all. For a second, I actually considered eating the tablets and then enjoying the pain du chocolate, but I don’t think those tablets work for someone with celiac disease. They may help break down grains for someone with mild gluten intolerance, but for me, they aren’t a solution. (It is also ironic that the word for bread is pain in French, and it causes me pain in English!) I was in a quandary about what to do. I really didn’t want to insult her, but I also didn’t want to poison myself. I decided to explain. I thanked her profusely for going to so much trouble, and offered to reimburse her. (She didn’t let me, so I sent her a gift card for a pedicure at her favorite place in my thank you note.) I think she understood. I watched her eat a pain du chocolate and felt very awkward and deprived. I tried to steer the conversation away from the beautiful foods she arranged, enjoying her companionship and the lovely setting instead. This is an example of the friend’s “vexing venue” where we have to have pre-thought-out strategies for how to deal with situations gracefully without offending anyone, or worse, losing a long-time friend. I feel honesty is the best policy, and as we’ve learned in this document, it hasn’t always turned out to be “best.” But we have to be true to ourselves.

Holidays and Restaurant Dining

We’ve examined family, home life and even bedroom issues imposed by celiac disease. Next, we’ll expand to the extended family holiday table and restaurant venues. Food is powerfully symbolic at celebrations and holidays (de Certeau, et al., 1998). Familiar food rituals are disrupted when a family member learns they have food sensitivities, especially if the food sensitive person suffers dire physical consequences. The health of the food sensitive person is usually a concern for the entire family and requires both redefinition of family practices and development of new stories to adjust to the changes imposed by a diagnosis. Families exert significant effort to create occasions of enjoying food and conversation together—key features of familial socialization (Ochs & Shohet, 2006). Successful meal planning considers the flavor pairings, food temperature, seating, table scape, and a host of other details. Families take a great interest in the foods they share during mealtime, especially during holidays with lots of guests. Attempting to make traditional foods with alternative ingredients often requires skills that the average home cook does not possess. To put it lightly, “cooking is fraught,” with many things to consider to accomplish a successful meal, especially when trying to accommodate someone with celiac disease (Bowen, Elliott, & Brenton, 2014, p. 21).

Hazel (#22) shares a story about how her mother cannot understand why traditional holiday foods are no longer permissible with the gluten free diet. She tearfully describes how the family has certain breads and gluten-containing dishes and how her mother insists they are part of the holiday dinner, even after Hazel told her mother she has celiac disease. She reports:

We do family reunions, and I have always been in charge of the food. And getting [mom] to understand that there were things that I couldn’t do anymore, like family favorite dishes, that I couldn’t participate in or even make. It was really hard. She thought that I was mad that I wasn’t in charge of the food. But it wasn’t that. It was just that I couldn’t eat it. That’s probably one of the hardest things.

Many deeply held principles are activated in Hazel’s heartbreaking story. The bread is sacred creed is embraced by her mother who wouldn’t alter the traditional holiday foods. Hazel, a mother of two says that both she and her daughter have celiac disease. She also thinks her father does too because he is often very sick after eating wheat and gluten-containing foods. His wife’s gluten-doubt suggests that his malady was in his head. Gradually, though, the mother/wife realized her I-know-best attitude and that gluten was making all of them sick. The mother finally understood and now feels bad for being so harsh and insensitive to her family. Part of the reason Hazel had such a hard time getting her mother to understand her needs is because up until this book, we haven’t had language to discuss when we collide with long-held cultural food practices.

Extended family holiday meals pose a serious social dilemma for those with restrictive diets. Social norms dictate that food is shared around the table, but the food is often contaminated with gluten, making the extended family dinner table a “vexing venue.” “Eating together does not necessarily mean all is love and harmony. If the table is the metaphor for life, it represents in a direct and exacting way both membership in a group and the relationships defined within that group” (Montanari, 2006, p. 3). The awkwardness of non-compliance to social norms, regular confrontations with deeply held beliefs, coupled with familial expectations is spotlighted by Emery’s reaction, after she was mocked for her illness:

I think that people should realize that it is an incurable autoimmune disease disorder. You don’t make fun of somebody who has cerebral palsy, or something like cystic fibrosis, and say: ‘Oh, that cystic fibrosis person causes so much trouble.’ We just never say that. But the celiac people, they’re totally free to be mocked.

Emery highlights a common double standard visible throughout this book that is applied to celiac disease but not other illnesses. Another respondent, Grace, describes her alienation during a holiday ritual. Her husband’s large Italian family has a gift exchange every year, where names are drawn prior to Christmas. She explained how family members could make requests for what they would like, and she always specified, “no food items.” One year, an older aunt drew her name:

So, I obviously [requested] gift cards because the easiest thing to get me is a gift card, and she got me an [gluten containing] Italian pastry! That was my gift. Of all people! And, I had to act graciously. And, this is what pissed me off most…my husband did not have my back...I would’ve loved for him to say something. I sat there and had to be thankful about it.

Grace was a victim of exclusionary etiquette rules when she had to show thanks for a gift that would make her very sick. She also mentioned that she felt alienated that she could not participate in the customary ritual of breaking the bread and sharing it with the other family members on Christmas morning. Alternatively, if Grace were able to consume the food item given by the aunt, she may have responded with gratitude and feelings of belonging by consuming their Italian traditional foods. Food, in this case, became a symbol of alienation from the family.

Liza (#68), however, had a different response when she received a holiday gift she could not consume:

My neighbor, who I felt like I had good rapport with, spent Christmas in Europe and brought me a souvenir from her trip to thank me for keeping an eye on her home. She went on and on about how she had this particular spread on her toast for breakfast every morning while there, and how she would sorely miss it because it was not available to purchase in the U.S. She was giving me one of the few jars remaining from her hoard. A true gift, I thought, because it was something she held dear. She asked me if I could eat it, and as I read the ingredients I saw that it contained both gluten and dairy, and that I would not be eating it. So rather than doing the polite thing and acting like it was ‘just the thing I was hoping for,’ considering how much she said she liked this rare delicacy, I decided to be honest. I said, ‘Paula, I am allergic to two of these ingredients and won’t be able to eat it. I feel terrible taking it from you since it is so rare, and knowing I can’t eat it. I would like it if you would take it and enjoy it.’”

This story defies exclusionary etiquette rules because Liza didn’t accept the gift graciously. Even though Liza thought she had good rapport with her neighbor and elected honesty, the expected response was that she would “embrace” the jar and tell her neighbor how much she appreciated it. Rather than being disingenuous, Liza elected to be honest. I asked her how her relationship with the neighbor was afterward, and she said it was never the same. She described watching her neighbor return home, walking on the sidewalk, shoulders lowered while holding the rejected gift, and deeply regretted being honest. Liza said from now on, she would “embrace” gifts from people no matter whether she could consume them or not. I’ve thought a lot about this scenario. Recently, I gave a friend a book and a bag of goodies to eat. I don’t know whether she had already read the book, or if she could eat the treats, but the note she wrote me made me feel like that book was “just the exact right thing” and that she would soon be devouring the treats. It made me feel like I hit a home run. There’s a lesson to be learned here!

Aren’t You Being Dramatic?

The extended family dinner table is where diseases of heredity are discussed. Even though celiac disease is genetic, many participants report they were the only person in the family with the disease. This could be because celiac disease is under-diagnosed in America (Fasano et al, 2003; Green & Jabri, 2003); or, it could be because of social resistance. One in ten family members share celiac disease (celiac.org, 2022). Family members observe the strife experienced of the diagnosed and don’t want to live through that too. Liza (#68) reports how when she told her sister she had been diagnosed with celiac disease, her sister said, “That’s your disease, not mine” and refused to get tested. Those with celiac disease eventually see gluten-containing foods as poison and wish that their family members would not consume it. For example, when watching other family members eating gluten, Lucy (#26) says, “I feel sad when I see them eating it,” knowing what it does to her and fearing what it may do to them.

Emery provides an experience of feeling like the only family member who admits to having celiac disease, in spite of others in the family presenting celiac disease symptoms. Emery says, “One has gout and others have all sorts of autoimmune inflammatory issues, and I’m like, well, I know why.” After being diagnosed, discovering that it is a hereditary disease, and observing symptoms in her uncle and nephews at an extended family meal, Emery suggested to her uncle that his family should be tested. He responded saying, “What? Are you sure you aren’t just being dramatic? Are you maybe doing it for attention?” These hurtful slurs caused Emery to defend her disease in ways that other diseases would not have to be defended. Furthermore, it isn’t her disease in isolation. Somebody in the genetic-line passed it along to her. Similarly, Cara (#53) reported a comment from a family member, saying, “You really don’t have to be that gluten free!” Another ignorant message delivered at an extended family meal came from Bert (#63), whose sister said, “I’m sure it’s not that bad” when he described what happened to his body after a minute amount of gluten. These comments exemplify the gluten-doubt belief and yours, not mine attitude.

Skylar (#64) says she attends dinners at other people’s homes, puts food on her plate so it looks like she is eating, but doesn’t eat anything. This illustrates another adaptive strategy that conforms to exclusionary etiquette rules where one must appear to be eating and enjoying the foods the hostess offers even though it is “dishonest.” It’s a dining dilemma. Cooks and gift-givers share their food as a way of showing their love. Rejecting it feels like a rejection of the giver, while acceptance by those with food sensitivities feels disingenuous. Is it better to pretend, or to be honest? If we aren’t honest with people we regularly see, we’re perpetuating the “lie” that will likely backfire sooner or later. If we are honest, we risk hurting their feelings and likely won’t be invited back for a meal. I want to believe we can be open and honest with each other about our needs with close friends and relatives, but social norms and rules of etiquette sometimes mandate other tactics.

Are You On Some Kind of Freakish Diet?

Accepted cultural practices in the restaurant scenario cause awkwardness for those with food sensitivities or celiac disease. Restaurant etiquette includes expectations of eating the chef’s special, not asking for changes, and praising the chef. When sitting at the restaurant table, one is expected to order, but not to be obtrusive about it. Other rules include, don’t be demanding, don’t embarrass others around the table, don’t annoy the server, be open to eating in places where others want to eat, share food, and talk about the flavor combinations. To stay safe, those with celiac disease often break every one of these rules. Interviews reveal dissatisfaction and lack of family compassion stemming from eating outside of the home. Rather than dealing with awkward social situations, many with celiac disease felt homebound in order to remain safe from cross-contamination and reported feelings of grief around lost social interactions. Many expressed a reduction in quality of life. In addition to ensuring safety, eating at home reduces the need for disclosure and negotiating menus with others. However, many celiac disease sufferers still endeavor to eat in restaurants. In this section, we see how participants navigate the restaurant venue, starting with a menu that has no gluten free selections. Quinn (#41) reports:

Early on in diagnosis, I visited my older son. He wanted to try a restaurant, and I wanted to go to a gluten-free restaurant. He insisted on the restaurant he wanted saying, ‘I’m sure they’ll have something.’ The waiter said, ‘There isn’t anything in the whole restaurant that is gluten free.’ I couldn’t order anything. I cried and felt isolated and victimized but more than that, there wasn’t anything I could eat.

Prior to going to the restaurant, Quinn asked her son to help her review the menu online, or to call first to see if there were accommodations made by the chef. He refused, and she went along, going hungry and remembering her son’s thoughtless comment, “I’m sure they’ll have something” indicating his I-know-best attitude. Quinn’s inability to stand up to her son’s lack of compassion to ensure her dietary needs are met, illustrate her absence of agency in the relationship. And his brush off comment saying, “I’m sure the restaurant will have something” illustrates the gluten-doubt belief.

In her story, Hazel describes a humiliating exchange involving a server and her whole family:

The waitress said, ‘So, are you on some kind of freakish diet?’ And my daughter said, ‘I am on a restrictive diet.’ The waitress said, ‘Well, it’s not like you need to lose weight.’ My daughter is very, very thin. My daughter said, ‘I’m not trying to lose weight, it just hurts me.’ And the gal just kept arguing, and arguing, and my son-in-law at that point said, ‘Hey, look, here’s what happens if she eats that: she might sit here and poop her pants. So, go fix her a salad.’ My husband was just in shock. I just started laughing. My husband said, ‘I’m so sick of this.’

This episode illustrates the array of reactions to a typical restaurant scenario, as several cultural practices play out. The server would not relent, pushing back and judging the daughter’s request, indicating the able bodied bias. The server’s attitude implied that the only reason someone couldn’t eat food was because they were “freakish,” discounting medical needs for dietary restrictions. The son-in-law graphically detailed her personal symptoms to the ignorant server, which caused the mother to laugh but violated etiquette rules. We don’t talk about such things at the dinner table, after all. The family showed compassion and understanding, trying to defend the daughter’s situation. Finally, the father expressed exasperation at this scenario, likely making the daughter feel the cause of all the unnecessary strife.

Other respondents echoed this struggle. In some cases, family members express chagrin when the person with celiac disease orders in a restaurant. Ivy (#40) describes a time when she was out to eat with her daughter and son-in-law, who think she is “high maintenance.” While ordering, the son-in-law interfered saying, “You are going to make the waitress mad.” Her daughter replied calling people with celiac disease, “Glutards.” These painful utterances continued to resonate with Ivy. Anna (#27) described going to a restaurant and ordering a salad, considering it the safest thing on the menu, specifying gluten free. The salad arrived with a dinner roll on top. In a display of solidarity, her husband sent it back, but the server refused, defiantly pulling the roll from the salad and placing it back in front of Anna. The server was enacting the I-know-best attitude, and gluten-doubt belief. These scenes illustrate the process of how family members come to terms to protect each other (or not) with food and gluten-related ideologies that affect behavior. Some family members and friends avoid eating out with those who have food sensitivities or celiac disease, such as when Naomi (#32) reports her sibling saying, “You’re such a pain. You always have to have your own stuff, and won’t share food.”

Of course, some respondents report positive experiences in restaurants. The degree to which the listener relates to a story is known as being empathetic, or how much sympathy and compassion the two engaging in conversation share. The more empathetic people feel toward each other, the more they connect to each other. This is usually because both share similar life experiences. For example, if the server also has celiac disease, he or she would likely take care to provide a safe meal to another with celiac disease. In a highly empathetic situation, the restaurant patron is likely to persuade the waiter to conscientiously provide a safe meal. The following interview from Allison indicates an empathetic situation:

I can honestly say that there was one person, and it was at a restaurant, shockingly, it was a manager who said, ‘There are people who come in here who have gluten sensitivity, but with you having an actual gluten disease, it is much more serious.’ He said, ‘here are the items that you can have, and I will make sure that they are prepared in an area where there won’t be any cross-contamination.’ He told me where the food was prepared, and he was willing to take me through the kitchen. He went above and beyond what he should have done, and I was so grateful for that. Not many restaurants are like that though.

Another respondent, Madelyn (#57), was in Las Vegas and asked the waiter for a gluten free meal. The waiter was very conscientious, and said not to eat from the buffet table because of potential cross-contamination. He “took care of her” with food she ordered separately.

On the contrary, Riley (#65) describes a time she went to a restaurant she regularly frequented, ordering the same menu item as usual with different results:

I ordered a gluten-free blackened chicken Caesar salad and I have ordered this before, and I started eating my salad and the jerk in the kitchen put the croutons underneath my salad where they were hidden. And I didn't know that until it started eating. I was so mad. And I have had that salad before, and I've never even seen croutons on it underneath anything. So you know it was intentional. And I told the manager, and she didn't really take it seriously. It was like, ‘oh well okay… Let me get you another one.’

Since 2012, those with celiac disease have been deemed “disabled” under the American Disabilities Act. This implies that the dietary needs of those with the disease are required to be accommodated. However, there is an exception for restaurants that says if their signature recipes are fundamentally altered when converting them to be gluten free, they do not have to comply. Until the American Disabilities Act (ADA) is amended to require eating establishments to have at least one “safe” selection on the menu for those with celiac disease, restaurants will continue to be a “vexing venue.” The American Disabilities Act and how those with celiac disease might use it to their advantage will be discussed at length later in the book.

Moving Toward Accepting New “Truths” and Living Gracefully

This chapter shows how long-held “truths” and generally acceptable cultural practices do not serve those living with celiac disease. The family meal is a complex event fraught with social norms and rules of etiquette. Day-to-day household harmony requires cultivating an understanding with our loved ones, often challenging their long-held truths. Many of the situations discussed in this chapter were uncomfortable, because no strategies had been pre-determined to make it easier. Just like the survival books tell us, we need to have pre-thought-out strategies in order to survive. We need to know how many doors are between our room and the fire escape before going to bed in a hotel. We need to count seats fore and aft in an airplane to know how many there are to an exit before take off. We must know what items to take with us if our home must be evacuated. Similarly, strategies for navigating social situations while living with celiac disease are imperative. These strategies ultimately redefine the ill person’s identity, and change dining dilemmas into pleasant situations. Learning to live with a disease is a process, which is the topic of the next chapters.

Podcast Interviews

Forum Questions:

1. Describe a conversation you’ve had with a family member that illustrates the yours not mine principle.
2. How have rules of etiquette impeded your safety at an extended family meal?
3. This chapter illustrates examples of telling the truth when receiving a gluten-containing gift, and other examples of accepting a gift as if it’s “just the thing” even though it contains gluten and cannot be consumed. How would you handle it if a good friend or family member gave you gluten-containing food?
4. What strategies do you use when you go out to eat to ensure you have a safe meal?

Ideologies in Chapter 5

References in Chapter 5

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