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

Celiac.com 01/14/2022 - Sometimes it’s hard to be a woman. —Tammy Wynette, 1968 Is your body a battleground embarrassing you with gas, bloat, pain, and dysfunction? In addition to that humiliation, do you also feel like people are judging you because your corporeal essence is too big, too small, or too noisy? Many people with food sensitivities or celiac disease are at odds with their most intimate companion, their body. This discontent is magnified when coupled with definitions of “feminine ideals” defined by the media, advertising, and celebrity role models. These ideals are unattainable or sustainable. Women in particular are taught to scrutinize each other for fashion, physical, and dietary infractions. We publicly convey dissatisfaction with our physical bodies, to always be “on a diet” in order to fit in, and to focus on physical attributes rather than intellectual endeavors. These pop culture edicts put even more pressure on those following special diets. In the previous chapters, we discussed how we live in a gluten-centric society (Chapter 1). We’ve identified several ideologies or “truths” that have emerged that cause trouble for those with food sensitivities or celiac disease (Chapter 2). Then we discussed some of the public venues where these ideologies play out (Chapter 3). Before moving on to how ideologies or given “truths” affect our home and family life in the next chapter, I want to now talk about the female body as a centerpiece for surveillance and scrutiny by others, and torment for it’s owner. Since 85 percent of study participants are female, it makes sense to focus specifically on feminine issues around the body. First, I’ll explain how cultural influences cause women to focus on dieting mostly for weight-loss, rather than for thriving on the “right” foods. I’ll point out the ideologies that cause us to overly scrutinize each other and ourselves. We’ll start with an overview of the macro-level influencers such as the media and corporations that define these “truths” in our culture. Then we’ll examine how these ideals impact individuals, but first I’d like to share a personal story. Jean’s Story - Associating Physical Issues with Diet I spent my whole childhood and much of my adulthood suffering chronic stomach pains and vomiting regularly. I was nauseated and often had a runny nose. My father had indigestion, too, so I thought it was normal to feel sick after eating. As an adult, I came across an article on stomach issues and dairy allergies in a woman’s magazine, while on a flight to Hawaii with my husband. Until that moment, it never occurred to me that food could be causing my stomach problems. Though it seemed like a monumental undertaking, on the trip, I decided to experiment with limiting my dairy intake. I avoided dairy for a few days and felt immediately better. Not yet entirely convinced, and lacking ideas for a substantive alternative, I ate cereal and milk before an all-day excursion later in the vacation. While hiking the stunning Haleakala Crater, my stomachache returned. I was nauseated, cramped, and uncomfortable—unable to enjoy one of the most fascinating landscapes I’d ever encountered. In that moment, it clicked: a lifetime of stomachaches and vomiting was caused—I was now certain—by dairy products. The Fascinating Human Body A few years ago, at the Denver Museum of Natural History, I attended the Body Worlds exhibit on the human body. Real humans were dissected to show the reproductive, circulatory, digestive, endocrine, immune, muscular, and nervous systems in a fascinating display. It was intriguing how these systems work together. I wandered through the exhibit full of awe and wonder. When it works, our body is truly remarkable, to be appreciated and honored. When something upsets its delicate balance, it is equally as curious to observe its ways of reacting to protect itself and to heal. Adapting to a physical malady also involves a psychological aspect too. Corbin (2003) conducted interviews on people who had a heart attack before age 65, asking how participant’s perspectives of their bodies changed as a result of the disease. She found that after an event such as a heart attack, or diagnosis of a disease, people detach themselves from their body by thinking of it as an object. This disassociation is part of the acceptance process, to re-establish trust and a new definition of normal. Participants in the study clashed with their bodies too. They opened their interviews by describing many physical maladies caused from consuming gluten. Ava (#7) describes her daily routine to go to work with the ever-present diarrhea many people with celiac disease experience: It's extremely frustrating because it's exhausting, and embarrassing. You are on your way to work and whoops, you have an accident. And then you have to turn around and go back home to change clothes. When I got to work late, I’d explain, “I had an accident.” And nobody would understand, so I’d have to get graphic to explain what happened. They’d say, “Well you should go to the doctor.” I’d say, “I’ve been to the doctor.” They’d say, “You should take Imodium and just deal with it.” Ava’s body’s unpredictability ultimately caused her to quit working. Many other participants described similar situations where their bodies embarrassed them by spontaneously vomiting, farting, or having diarrhea, or how they lived with debilitating, undiagnosed pain. I asked Ava if she struggled with her weight, thinking she must be very thin because she experienced regular diarrhea. She said, “Gosh no. I’m very large. I weigh 250 pounds. I have diarrhea so often, how can I possibly be obese? I should be thin as a rail. But when I found out that I was not actually absorbing any of the nutrients from the foods that I was eating, that explains why I am obese. I have malnutrition.” When she was finally diagnosed and altered her diet, her debilitating gas, diarrhea, and body mass reduced. Just as the body is a site of contention for those with food sensitivities and celiac disease, for many women, the body is an adversary as they struggle to attain what they perceive as their ideal weight. The dieter sees her body as a point of betrayal. In an out-of-control roller coaster, the body’s weight goes up when consuming delicacies or down when electing deprivation. Rather than seeing the body as a fascinating place to live in as we navigate the world, many view their bodies as an obstacle – something that defies earnest goals and restricts them from participating in many aspects of life. Diet failure reveals itself with the number on the tape measure, the dress that won’t zip, or the turned up nose of a friend who at that very moment is successful with her dietary goals and fitness achievements. And we hate her for her success as we wallow in our misery, wishing we’d bought a size bigger in that new outfit we thought we’d shrink into by now. Jean’s Story - Momma’s Diet My mother joined a weight loss program when I was nine years old. She was five feet, two inches tall, with intense blue eyes and brown hair. In middle age, she deemed her body was larger than she wished (albeit by today’s standards, she was “healthy”). Her weight annoyed her because this was a time when Twiggy had the coveted female body. Bone-thin was in! She counted calories, weighed everything she ate, and studied the program cookbook. In those days, a hot dog with cabbage in tomato sauce passed for a “skinny” meal. One dessert recipe from the cookbook instructed dieters to whip powdered milk, water, and a packet of artificial sweetener into a light cream. It tasted like sweet air. I left those meals feeling hungry and dissatisfied. My mother stayed with the program through the years, becoming a long-term member as she strived to achieve her ideal body. Foods were marked “good” or “bad,” depending on how fattening they were. Cookies and cakes were “bad” and fruits and vegetables were “good.” Year after year, she cycled through the loss and gain of the same 10 pounds, alternating between making “skinny” dinners, or rich, memorable “Sunday” dinners worthy of a magazine cover. As a dutiful daughter, I celebrated and commiserated on cue but since I was thin then, I didn’t need a diet program. In the 1980s, I worked for IBM. Their wellness program included a free diet program membership, offering lunchtime support-group meetings in the office. I arrived at the meeting wearing a dark green suit with a lizard pattern shirt and shoes. Immediately, I was ushered to the corner for the weigh-in. Stepping my 5’5” body on the scale, shoes and all, I weighed 124 lbs. The group leader looked at me, irritated, and said, “Why are you here?” “I think I’m allergic to dairy products and need help with my diet,” I responded. “We don’t deal with food allergies here. And you don’t weigh enough to join our program.” Her comments were loud enough for my curvy coworkers to hear. A few clicked their tongues and many rolled their eyes. I was humiliated and left to figure out a healthy diet plan for myself. Dieting is a woman’s project. —Corrinne Bedecarre, 1971 Dieting is a Rite of Womanhood The “thin trend” began in the 1960s with social-cultural influences directing feminine ideals. In the past sixty years, diet fads have swept the nation with promises of weight loss and health, with catchy brand names such as: “Skinny Bitch” and “The Zone,” or medical sounding names such as “Blood Type,” “Glycemic Index,” and “Macrobiotic.” Some are named after people, such as “Jenny Craig” and “Atkins,” or places like “South Beach.” A “diet culture” has evolved in the U.S. over the past fifty years, perpetuating gender biases that pressure women to pursue health, physical, and dietary standards (Lockford, 1996). Women have become “entrepreneurialized” (Thornton, 2011, p. 399) as companies profit from the diet awareness and able-body bias ideologies. Similarly, dieting women are “governed through their own freedom and subjectivity” (p. 401), as they flip through a magazine full of food ads and diet plans with thoughts of experiencing a fulfilling life with a slimmer, healthier body, thus upholding the ideology that a “fit, healthy body … is the best fashion statement” (Scott, 2017). In addition to pressuring women to attain certain physical features, magazines may “instill false confidence in one’s ability to achieve unattainable results through impractical strategies and time periods” (Sarge & Knobloch-Westerwick, 2017, p. 260). The effect of dieting is failure for 95% of the population (Statistics on Weight, 2011), and most dieters gain additional weight within a few years (Statistics on Weight, 2011). Websites targeted at weight loss generate $842 million, according to a six-year trend analysis conducted by Market Data Enterprises (2016) pointing to why dieting ideologies for women permeate cultural practices. It’s big business! Physical Ideals Between the ages of 16 and 45, women report trying an average of 61 diets (Smith, 2012). The weight loss industry has flourished in popular culture due to the rising weight of many Americans. Controlling one’s body by limiting caloric intake has become common practice. Physical archetypes of the female body perpetuated in the media since the 1950s (Montanari, 2006) have led to dieting as a “permanent rather than temporary condition” (Andretta, 2015, p. 470) for the past half century. Gender inequities and cultural norms complicate social behaviors specifically by affecting women and how their bodies are viewed by society. The exemplary body in Western culture is able, fit, and healthy (Spitzack, 1993). This obsession with attaining physical perfection is a form of oppression, as women strive to maintain their goal weight and an optimal physique in order to be accepted (Bedecarre, 2005). Dieting seems to be a rite of womanhood after childbirth, to thwart off additional pounds from aging, or to attain a healthy body. People are pressured by the media to lose weight. Further, media exposure, along with feedback from family and friends affect “eating attitudes and behaviors” (Ata, Ludden, & Lally, 2007, p. 1033). Studies show that women who viewed advertisements depicting the ideal feminine body were more likely to convey dissatisfaction with their bodies afterward (Levine & Smolak, 2002; Yamamiya, Cash, Melnyk, Posavac & Posavac, 2004). Millions of Americans engage in dieting with the goal of weight loss or improving overall health and physical function. Diet Consciousness How did this diet consciousness evolve? For the past 60 years, large dieting companies have defined American food practices and gender-based ideologies particularly among women. With millions of members, 90% of whom are women (AdAge, 2011 quoting MarketData Enterprises), these companies have had a pervasive influence on women’s sense of the “perfect” body (Lockford, 1996). Their ideals of “wellness that works,” reflect that a fit, healthy body is a coveted symbol of success and competence (Bentley, 2005). Some of the companies provide group support and camaraderie of others striving for similar goals. Some programs help members attain their goals through behavior transformation techniques and weekly attendance at face-to-face or online support group meetings. The support-group-style meetings reinforce that “weight consciousness is principally a women’s condition” and diets are something you go on and off of (Bayrd, 1978 as cited in Lockford, 1996, p. 291). Surprisingly, when compared to other popular weight loss programs, one of the most popular programs yields the least weight loss per year (Statista, 2017a) -- at least 2.6% greater weight loss than those assigned to a control” group (Gudzune, et al., 2015, p. 1). This means a successful 150-pound dieter would benefit by losing 20.5 pounds on the program versus 20 pounds going it alone in a given year. The difference is that the person going it alone would not have access to the support systems offered by the program. National dieting companies cultivate a powerful diet consciousness. Support meetings and apps attract millions of subscribers who learn accountability and earn rewards for compliance and goal attainment. Celebrity endorsements instill ideal standards for behaviors of everyday people (Schultz, Nolan, Cialdini, Goldstein & Griskevicius, 2007). Publicly awarded charms, group meetings, and weigh-ins create a culture of constant surveillance (Lockford, 1996) and reinforce mastery over one’s body as the symbol of success (Bordo, 1993). Also, the practice of setting goals, and attaining them gives participants a sense of accomplishment (Heyes, 2006). Dieting ideologies are common in our society. It is normal to say, “I’m on a diet” when declining to eat dessert, or foregoing the rich sauce. The wild success of the weight loss industry in the past half-century has made comments such as this part of our accepted culture. Performing Womanhood The popularity of weight loss programs have created ideologies on how women “perform” womanhood, perpetuating these ideals where “culture’s grip on the body is a constant, intimate fact of everyday life” (Bordo, 2003, p. 17), and self-esteem is linked to body image (Harter, 1999). Weight is a common topic of discussion among my participants, as exemplified by Arina (#47) who weighed 160 pounds at 5’5” before being diagnosed with celiac disease; after going gluten free, she lost 30 pounds. Without being asked, many female respondents volunteer their current weight and fluctuations after being diagnosed and going on the gluten-free diet, expressing frustration at weighing too much or too little. Those with celiac disease are stereotyped in the medical community as being ultra thin, however this is not true. People with celiac disease come in all shapes and sizes. Some study participants who were ultra thin report being relieved to gain weight after being diagnosed with celiac disease, such as Ivy (#40) who gained ten pounds once off of gluten. Layla (#66) talks of being betrayed by food, saying: “When I was younger, before the dietary change, my favorite foods were glazed doughnuts and French fries. It is impossible to have gluten free glazed doughnuts. There was a bit of a sting when I found out it was my favorite thing that was making me feel so sick. I felt hurt and betrayed by my body, and the foods I loved.” Layla’s statement describes the conflict between our favorite foods and their negative impact on our bodies. Jean’s Story - Eating Frenzy Years after going off dairy, feeling a little better but not great, I was finally diagnosed with celiac disease. Desperate to feel better and perplexed about what to eat, I decided to eat only vegetables, berries, fish, chicken, seeds, and nuts. I did this for a long time, and even though I was a lot better, I eventually felt deprived on that drudge of a diet. One Christmas, I stuffed my husband’s stocking with a bag of dark chocolate covered almonds. He politely offered me one when he opened them on Christmas morning. I ate one. Then perhaps from having a little ketosis from eating so few carbs for so long, I ate the whole bag as he looked on with surprise. I couldn’t stop! I scarfed those chocolate almonds like frenzied maggots eat carrion. That taste of sugar set me on a bender. In the following months, I indulged. I developed gluten and dairy free recipes for chocolate pie with brownie crust, peanut butter sandwich cookies with sugar on top, cheesecake with a graham cracker crust and strawberry sauce on top, chocolate cupcakes with marshmallow filling and chocolate icing, banana muffins with chocolate chips, carrot cake with raisins, pecans and thick white icing, chocolate chip cookies, butterscotch pie, lemon meringue pie, fudge, angel food cake, gingerbread, oatmeal cookies with chocolate covered raisins and pecans, pineapple upside down cake with sticky brown sugar on top, sweet cornbread, bread sticks, pizza, focaccia, strawberry shortcake, cherry cobbler, baked custard, puff pastry, chocolate soufflé, lemon torte... all of the foods I ate while growing up. The bender was good in a way, because it enabled me to develop most of the recipes in my Bake Deliciously cookbook! I became obsessed with temptation, causing me to forsake my dietary resolves, seeking to fulfill myself with sweet treats, triggered from eating those sugary chocolate almonds. It was no different from being an ex-smoker smoking “just one” cigarette, or an alcoholic taking “just a little” drink! Those delicious chocolate almonds triggered me to an orgy of sugar consumption. I got along fine with my delightful sugary snacks until one day when I had a business meeting and had to wear a suit. I put on my favorite worsted wool suit (the one I’ve worn for years) and I couldn’t get the pants zipped! I needed four more inches. I had gained weight. I felt betrayed by my body once again. Being gluten and dairy free wasn’t enough to satisfy my body’s needs. In order to be thinner, I had to go on a reducing diet. I needed to find a diet program! (It never occurred to me to buy a bigger suit.) The best slave doesn’t need to be beaten, she beats herself. —Erica Jong, 1991 Perpetual Dieting Women’s weight is a sore topic, and one many struggle with for a lifetime. Why is this? Aside from childbirth and sporadic exercise plans, I think it is because everywhere you look there are pictures of tempting foods and because food norms have drastically changed. It used to be that we were told to eat three square meals a day, but now, advertisers encourage us to eat throughout the day. Further, it used to be that we only ate while sitting at a proper table. Now it is acceptable to eat virtually anywhere. Fast food is readily available to pick up on the way home from work for dinner and ride-share drivers deliver food from almost any restaurant. While many restaurants and fast food joints offer healthier options such as veggie bowls, salads, and lean meats, when hungry, it is tempting to throw in the fries or the delectable dessert. It is just too convenient to eat these ubiquitously available foods. This is not a new problem. Margaret Mead said this in 1971: “The problem for great numbers of Americans is not how to get enough food or how to be well-nourished, instead it is how to fend off the insistent pressure to eat” (Mead, 1971, p. 19). Bordo (2003) echoes this 30 years later by observing that “almost all of us who can afford to be eating well are dieting – and hungry – almost all of the time” (p. 14). Women reported feeling guilty 11 percent of the time after eating certain “forbidden” foods in the course of one week (Steenhuis, 2009). That speaks to the power of advertising and constant reminders on social media. According to the CDC, 42.4% of Americans are overweight (CDC, 2017-18). Disparagement of the body and its physical enjoyment of food are viewed by some women as “disgusting and transgressive” (Magee, 2007, citing Bordo, 1998, p. 18) by saying self-judging statements such as: “I was such a pig,” or “I can’t believe I ate all of that,” or “I am so disgusted with my weight, I can’t believe how fat I’ve become.” Food “porn” encouraging excessiveness is commonly displayed on TV with concoctions such as eating hamburgers using glazed doughnuts as buns, topped with cheese and bacon. It is common to go to gatherings and hear about the latest “sinful” dessert someone has devised with names such as “Death by Chocolate” (Desaulniers, 1993) and ingredient combinations of candy bars, whipped cream, brownies, ice cream, nuts, etc. (Incidentally, this recipe has evolved to no less than 15 iterations online!) Or “crack,” that winning combination of salted peanuts and candy corn. Temptations abound, and participation is a way to being accepted in the “club.” Eating is social, and as discussed before, not participating in it causes subjugation. When people get together and there is cake, wine, and chocolate, who wants to be the person abstaining? That isn’t socially acceptable. It’s not fun either! We’ve discussed the cultural influencers above. Next, let’s examine the specific ideologies that shape the diet mentality and how it plays out in our daily lives. By labeling these, and pointing them out when we experience them, we start to empower ourselves to change these “truths.” How do we know when we are successful? Change is a gradual process as people revise their long-held beliefs. We know we’ve affected positive change when we listen to comedians from the last generation and realize the jokes they are telling are totally inappropriate in this time. Or on the contrary, when we watch a movie from yesteryear and see how those affected are treated then versus now… sometimes we realize we haven’t made any progress and wonder if things will ever change. There isn’t a “social change playbook,” but steps followed by those wishing to affect social change include: A relentless effort to create awareness of how the dominant hegemonic group affects those who are dis-empowered. Figuring out how to peacefully show those who represent the status quo, so they are aware of the plight and hear the voices of those usually silenced or oppressed. Reclaiming and redefining maligning labels – redefining the maligning words to positive meaning. Developing and incorporating language to use to call out infractions and publicly pointing them out, so others understand and use the language too. Unless the status quo is disrupted, those in the dominant hegemonic group are complacent. I’ll develop this more in a later chapter, but as you read through this chapter, think about how women are influenced by media and corporations to see their bodies as a battleground, rather than something to uphold, love, and nurture. Keep in mind that in order to change ideologies, we need to first label them. The next section identifies some of the most prevalent ideologies surrounding women’s bodies. Diet Discretion Ideology The diet discretion ideology is when others are overly interested and often (but not always) judgmental about our dietary choices. Ideologies about diet adherence equate to a “perfect” woman with a “perfect” body. It is commonplace for a woman to ask another about her diet. The other night, I was eating dinner at a large wedding, sitting next to someone I’d never met before. She asked me what I did, and I said that I was writing a book about the social aspects of food sensitivities. She told me a touching story about how her son had been diagnosed with Autism when he was young, and after years of seeking help, they finally found a doctor who suggested a gluten and casein (dairy) free diet. Within three months, her son went from non-verbal to verbal and regained his health through dietary changes. In the meantime, she said, “I know I shouldn’t eat gluten and dairy, but I do, and here’s what happens.” She pulled out her cell phone and showed me pictures of her face and neck with a flaring rash. Then she asked me what my diet consisted of as she assessed what I had eaten on the plate in front of me. This didn’t surprise me at all, because it happens all the time and illustrates several levels of the diet discretion ideology. Women are in charge of providing nourishing meals for their loved ones, and constantly seek to learn how other’s attain health through various practices including diet. To do this, we are innately trained to observe what others eat. It is a form of survival, and a way of human bonding. Just as this book strives to create awareness of our gluten-centric culture, lately organizations have formed to de-stigmatize stereotypes of curvier people. These societies seek to create awareness of weight discrimination. Rather than apologizing or hiding those curves, women are encouraged to be proud of their bodies, accept them, and celebrate it’s ability to do the things in life they enjoy doing. It is a power movement that may change some of the biases formed over the past half-century. One recent result is seeing women of all sizes in ads, films, and on television, playing in desirable roles, doing activities, living a well-rounded life, rather than seeing those that don’t meet an arbitrary ideal as the butt of a joke. This is a positive change pointing to social acceptance of all body shapes. Celiac-Specific Dietary Discretion In a culture of dietary surveillance, women with celiac disease are subject to a host of assumptions around their requirement to maintain a gluten free diet. Some women participants experienced suggestions that their gluten free adherence is actually a form of self-punishment. Others are accused of trying to evoke sympathy, as exemplified by Sadie’s (#41) mother. She dismissed her daughter’s illness, noting, “You are just trying to get attention.” Some even face outright denials such as when Carrie (#4) reports that her daughter “didn’t believe in” the need for a gluten-free diet and says it is a “stupid fad.” Similarly, Julia’s stepmother “doesn’t believe in ‘Celiacs,’ or that people have food allergies.” These practices lead to obsession with food, weight, and the development of disordered eating behaviors. This sentiment is illustrated by Julia’s (#49) father’s chide when he commented, after learning of her condition, “If you are unable to eat so much, why are you so chubby?” His observation reinforces her need to be aware of her appearance, and that others are observing her body size. Women self-regulate their diets to fit within the confines of current trends. When not compliant, women often have feelings of insecurity, shame, guilt, and negative self-image (Science Daily, 2011). When women successfully lose, weight loss companies tout feelings of “true self-knowledge, self-development, self-mastery, and self-care” (Heyes, 2006, p. 145). Women are constantly reminded of success or failure because mirrors and scales are gauges of self-regulation (Bedecarre, 2005). Another ideology that results from over-awareness is the by-the-numbers ideology. By the Numbers Ideology Dieters quantify everything – how much they weigh, how many grams of fat, carbs, and protein that they eat, the total number of calories in a given day, their measurements, etc. We are taught to do this when learning different diet programs. And it’s normal because as we strive to learn what a serving size is (often a quarter of what we think!) we have to learn these things to manage weight. We enjoy success from this too because by limiting our carb and fat intake to an ideal number of grams per day, the scale rewards us with lower weight, and we can finally wear those “skinny” clothes in our closets. The annual doctor’s examination brings on another set of numbers tied to what we eat – the complete blood count, showing the amount of lipids in our blood, the glucose and HbA1c number that indicates diabetes, and giladin, tTG, IgA, and/or IgG numbers for those with celiac disease. And since we know that our numbers improve by watching what, and how much we eat, it is easy to find yourself living by the numbers – counting everything and monitoring the outcome. It’s an analytical approach to discovering “truths” for your body. However it is completely frustrating when attaining undesired results even after adherence to a recommended diet plan. Why doesn’t it work? Because every body is different! There is not a one-size-fits-all diet plan. It is something we have to learn for ourselves. It takes time, patience, education, and a willing doctor to help us navigate it. It also requires us to surrender to the fact that we have inherited genes that work against us. Size Surveillance Ideology Starting in childhood, girls are pressured to stay thin. Parents Google “is my daughter overweight” and “is my son a genius” (Stephens-Davidowitz, 2014). This illustrates what parents focus on depending on the gender of their children perpetuating the notion that genius boys and thinner girls have the best prospects. Throughout life, women monitor each other’s weight, so much so that “you can remember if their weight was ‘up’ or ‘down’ at different times of their lives” (Bedecarre, 2005, p. 220). This illustrates the size surveillance ideology. Rather than focusing on each other’s accomplishments, we seem to be preoccupied with how we look and whether or not we have succeeded on our diet plan. It is a regular topic of conversation. A weight-conscious culture and the fanatical behavior it influences combined with regular peer-surveillance, (Spitzack, 1993) make dieting a gendered issue and source of social conflict, magnified when coupled with a food allergy. When someone finally conquers an addiction, or attains a fitness level, it is something to be celebrated. But an unintended downside is that your proud announcement causes everybody to look, and look again next time to see if you still are complicit (Lockford, 1996). Women are defined by their physical attributes to the point that their “humanity has been dismissed” (Bedecarre, 2005, p. 215). Being overweight instills self-loathing and emotional strife (Lockford, 1996) in many women who feel they are substandard because of their bodily size. As a result, our culture subjects women’s bodies to constant surveillance (Bordo, 1993). It is ironic that what once started off as an individual quest to watch her weight became a cultural norm of watching each other’s weight. Women regularly scrutinized each other’s weight and food-related behaviors (Bedecarre, 2005) in ritualistic surveillance practices focusing on defects (Spitzack, 1993). Women judge those who have allergies for consistencies and behavior (Samuels, 2003). Once a coworker watched me eating a gluten-free cookie. She said, “I knew you weren’t 100% gluten-free – look you are eating a cookie!” I didn’t even bother to explain. Dietary discretion and size surveillance by others is exemplified by Ruth’s (#69) comment: After many years of trying to fit in at extended family dinners, pretending to eat but not eating a thing, I finally decided to bring my own food to my aunt’s house for brunch. It was Easter morning, and the family members were eating gooey cinnamon rolls, sausage, and chocolate Easter eggs – foods I dearly love. They were commenting to each other how good it all tasted, pairing Easter eggs with bites of cinnamon rolls. I opened my sack and began eating. Out of the corner of my eye, I thought I saw my aunt sneaking a picture of me eating my food. Was she taking a picture of me because I was eating my own food? I looked up and she hurriedly put the camera away. I felt like my resolve to bring my own food was being judged and watched. I was embarrassed and wondered if she was going to post the picture of me eating the foods I brought on social media. Ruth describes how she felt when she finally resolved to bring her own food. I imagine it was hard for her not to feel deprived as she listened to her family describe the treats they were eating, but she shared that she was comfortable with her decision because she knew it was the only way to stay healthy. Her feelings of familial acceptance changed when she caught her aunt taking a picture. That heartbreaking act showed that her aunt’s previous encouragement for Ruth to bring her own food were disingenuous. What fortitude and a charity of forgiveness Ruth must have had to over look her aunt’s peccadillo and to press ahead with her resolve. This scene Ruth describes illustrates the minute-by-minute challenges we face whenever we defy established customs or norms, no matter why. It takes courage to persevere. Clara (#70) says, I have a friend who tells me every January, “I’ve gone back on the diet.” And every year she describes the new tweaks the plan has taken. It is normal for me to want to drop my eyes to assess her body. After years of conditioning, I have learned not to look, and not to ask as the months go by. While I want to support her in this endeavor, I do not want to scrutinize her weight. Predictably, every June she announces she has “gone off of the diet” and then eats whatever she wants until December. It is a cycle she has repeated for twenty-five years. It works for her because ultimately she nets the same average weight. Ideologies of feminine physical perfection kick in and the woman’s food choices and dieting success or failure becomes an acceptable topic of conversation (Dworkin, 1989). It is a yo-yo cycle that for many goes on for years and years, losing and gaining the same ten to twenty pounds into perpetuity. Sexual Scrutiny Ideology There seems to be a separate set of medical standards for the genders. For example, Kaylee (#52) describes how she went to three doctors, who prescribed pills for her complaints that included “painful constipation, a throat full of phlegm, and hair falling out.” She also gained weight. One doctor said it was hormonal, another prescribed steroids. One thought she had lupus. Finally, two years later, she found a doctor who suggested eliminating gluten from her diet, and that “literally changed everything.” All of the complaints went away in time. Kaylee wondered if a male had presented the same symptoms, if they would have been subjected to the same years of rigmarole. According to Stone (1995), women are more prone to concealing their disabilities and are “morally responsible for their own imperfections” (p. 414), blaming eating habits and lack of exercise for their maladies (Spitzak, 1993). Individuals who fear there is something wrong with their health regularly “misidentify the factors that were responsible for the maladies” (Davis, 2005, p. 171) and are often misdiagnosed by the medical community. Since there is already a propensity for food-related disorders in this demographic, the woman may not be taken seriously when she presents with a gastric-related illness and the doctor may erroneously conclude that her symptoms are caused by a life-long-cycle of dieting practices. This mentality illustrates the sexual scrutiny ideology. Many women with celiac disease who have been told there is nothing wrong with them, or that their symptoms are “in their head,” or misdiagnosed by physicians, are left to suffer for an average of eleven years before learning that gluten is the cause (Green & Jabri, 2003). Celiac disease is overlooked for a variety of reasons, including the inability to correlate systemic symptoms with celiac disease, inadequate medical tests (Fine, 2003), and myths indicating that it is a “mal-absorption syndrome of childhood” (Green & Cellier, 2007, p. 1731). Misdiagnosis, coupled with accelerating symptoms causes those with celiac disease to experiment with one diet or another in order to feel better, sometimes leading to peculiar eating practices. Unintended Disordered Eating Patterns The intense focus on dieting promoted by diet companies may be one of the primary reasons that 90% of those with eating disorders are women (Arroyo & Segrin, 2013 citing American Psychiatric Association, 1994). Multiple years of dieting to attain physical ideals are a form of oppression, as women strive to maintain their lifetime goal weight and an optimal physique (Bedecarre, 2005). In addition to dieting in private, women also self-deprecate their bodies in public in order to be accepted by their peers (Britton, Martz, Bazzini, Curtin & LeaSchomb, 2006). In fact, public claims of physical satisfaction with their bodies led to women being ostracized in social circles (Britton, Martz, Bazzini, Curtin & LeaSchomb, 2006). So we learn not to talk about our physical achievements, and to hide our dietary idiosyncrasies. But as we achieve health, we strive to learn more about how to maximize our success. What began as a quest to attain health through dietary choices may escalate in time to an obsession, perpetuated with positive results (Oberle, Samaghabadi, & Hughes, 2017). Those with food allergies are prime candidates for the development of disordered eating as they strive to find foods that do not make them sick. Extreme practices create an identity through food (Guptil, Copelton, & Lual, 2013), causing relational strife for newly diagnosed individuals, as their families adjust to new eating behaviors, which may include a only a few “safe” foods. It is not uncommon to hear someone declare, “I’m vegan” or “I’m gluten free.” Piper (#43) says, “I think about food all the time.” She goes on to describe a time when traveling in France as her sister enjoyed wine, cheese, and bread – foods she no longer can consume. Piper said, “I felt sad. I couldn’t do what everybody else in the world can do.” Hailey (#38) says she feels that people with celiac disease are more sensitive to other foods too. She notes, “If I want to feel good, I just eat fruits, veggies, and meat.” Sixty one percent of the study participants reported consuming a diet comprised mostly of lean meat, vegetables, and fruits. William (#60) describes the extremes he has endured in order to regain his health. He was diagnosed at age 45. Still not feeling well on the gluten free diet, six years later he did a food sensitivity test and learned he was sensitive to 39 foods. He struggled to find professionals who could help him, spending a lot of money in the process. He learned from trial and error that his best diet consists of meat (grass fed beef and meats raised with no antibiotics), vegetables and some roots such as sweet potato. He eats very little fruit, and no nuts or seeds. He eats no coconut oil or avocado because he has found both cause skin rashes. His body does not tolerate alcohol, wine, garlic, or onions. He rotates the foods he eats to aid in the digestive process. Further, he takes supplements to substantiate the digestive process including vinegar, hydrolyzing enzymes, de-glycerized licorice, pepsin, glutamine, zinc carnosine, magnesium, turmeric, calcium, and magnesium citrate. Doctors prescribed antacids for his stomachaches, and he learned that was the worst thing a person with celiac disease could take because it caused pancreatitis. Though he is aware he is being observed and discussed when visiting extended family to join them for a meal, he prepares his own using the microwave or hotplate in the basement to avoid being cross-contaminated, or from breathing the gluten-filled air in the main kitchen. All of these practices have made him feel better in spite of being 5’10” and weighing 120 lbs. He would like to weigh 160 lbs. He has lived this way for 17 years and admits it is tough, but his efforts have paid off. He has healed his skin rash, eliminated chronic constipation, and rid himself of stomach pains. This illustrates someone who has taken the initiative to learn “what it takes” to fix himself and to feel better though his efforts may be deemed extreme. In the process, he has endured surveillance and scrutiny by family and friends. This is a glowing example of courage and taking initiative to regain health. Others describe practices that would classify them as “disordered” because thoughts of food prevail and affect all other aspects of life yet they maintain these habits to stay healthy. Allison (#35) after describing the physical misery she endured before being diagnosed, and despite the hardship it imposes says, “The gluten free diet saved my life.” Attaining a healthy body can drive a person to practice extreme eating habits as a form of self-preservation. Liza (#68), describes her daily lifestyle: As long as I can make my meals myself, I’m fine; but the minute I have to rely on someone else’s judgment, whether it is a pharmacist, doctor, dentist, food server, or whatever, to deem what is OK for me to put into my mouth, I feel vulnerable. Unless you are highly sensitive and reactive, and live with the disease, you have no idea what it is like to worry about every single instance where you could be cross-contaminated. People are careless, forget, or don’t take it that seriously. Some just “throw up their hands” in frustration with my special needs. I’d rather take care of myself, but really fear the day I may need to rely on others to feed and care for me. If there are crumbs on the table in the coffee shop left by the previous occupant, or in the air in my friend’s home from baking cookies yesterday, or in the glue of the new paper straws, life becomes a never ending game of Russian Roulette to avoid being contaminated. I’m constantly wiping down surfaces, sometimes breathing through a mask (to avoid flour particles!) and always wary. Gluten can be in some very unusual things that don’t have to report it, such as hairspray, teabags, hand lotion, over-the-counter pills, and pharmaceuticals – many things that you wouldn’t expect. Existing day-to-day in this gluten-filled world is risky. Crossing the Line The Anorexia Nervosa and Associated Disorders Organization estimates that 30 million Americans across all ages and genders suffer from an eating disorder at some time in their lives. What’s more, among women over 50, one-in-ten exhibit eating disorder behaviors (ANAD, 2020). Eating disorders are a serious illness that can result in altered lifestyles, and death. Disordered eating begins with spending an inordinate amount of time thinking about physical health, through diet, exercise, reading labels, understanding the functions of foods, and limiting the diet to the few foods that don’t cause “trouble.” Jean’s Story - I Haven’t Farted Since 2005! I’ve been called “a dysfunctional eater” by acquaintances because I omit whole food groups. And there are medical professionals out there that would say the same thing. I am not anorexic – I don’t hate food. I love it. I consider it an art form. To create a successful recipe with alternative ingredients is rewarding. But many foods don’t like me. I’m frankly tired of the havoc foods impose on my body. Most people look at a feast with zeal. I look at it and think, “that will cause my forehead to puff out, that will cause a rash, that will make me bloat and fart, that one causes rosacea, that one might get stuck in the digestive process, and on and on.” After I told a nutritionist that I was allergic to dairy, she insisted that I had to have it in my diet in order to get calcium! In her narrow understanding of food, fortified dairy products were the only source of calcium. We have to realize that a lot of people who judge us are ill-informed, and maybe non-reactive to food. I’ve encountered people who eat anything and everything and shake their head at me when I refuse to. Some even have told me, “If it’s made with loving hands, it will nourish your body.” Not if it’s got the wrong ingredients, thank you very much! My lifestyle choices do not feel disordered or dysfunctional. Rather, they serve me. After finally being diagnosed, and eliminating gluten and dairy from my diet, and then all grains, and all processed foods, I experienced profound health in my body. I stopped my sugar indulging and went back to eating vegetables, some lean meat, berries, nuts, and seeds. I feel better at this age than I did 20 years ago. I have plenty of energy to serve my daily needs. In fact, I think it is kind of surprising when friends younger than me have to go to bed at 9:00 PM because they just “run out of gas.” I don’t experience that. My body finally functions relatively normally. I sleep well, and nothing chronically hurts. These changes came from focusing on my diet, carefully tracking what I ate and how I felt a few hours and days later. Over the years, I learned which foods my body can process without giving me trouble, so I focus only on eating those foods each day. As a result, I maintain the same weight. That is a far cry from how I was 15 years ago when I was larger, bloated, gassy, covered in a terrible itchy rash, and had rosacea on my nose. I was dying then. I am thriving now. It’s been a hard road, though, to eat foods and experience their affects, sometimes most unpleasantly for weeks in order to learn what “works” and what doesn’t with this fascinating body of mine. It comes with its own reward. The reward is a “working” body, which if you have, you don’t realize what a gift it is until it is gone. The war is over. My body and I have achieved peace. Most importantly, I haven’t farted since 2005! Orthorexia – Healthy Anorexia People who focus a lot of energy on their health, to the point where it is a major feature of life are termed disordered or dysfunctional. People who carefully read labels of the foods they eat, who limit their foods to a very few, who have regulated exercise routines and spiritual practices are termed “orthorexic” or “healthy anorexic,” where someone maintains her health while practicing “disordered eating practices” (Musolino, et al., 2015, p. 18). By their definition, because I am gluten-free, dairy-free, grain-free, sugar free, and mostly vegetarian (except fish and chicken occasionally), because I read labels carefully (to avoid these foods, and other allergens), have planned meals with few foods and a regular exercise regimen, I’m orthorexic. Well bring it on! I’m much better than I was when I was “normal.” I also know that I have food anxiety. If I am at home and can control my diet, I’m fine. But when I travel, and have to rely on other people’s decisions about restaurants, have no way to store food, and have to carry whatever I am going to eat, I panic. Food anxiety isn’t a fun thing. Knowing I have this helps me plan around it, but the best made plans don’t always work. Later in this book, I’ll detail my travel strategies, but when border control takes away all of my food upon arrival to a country for a two week trip, panic sets in. It’s a trigger that can cause a cascade of fear-induced extreme behavior. Knowing this about myself helps me to control it with adaptive strategies. Adaptive strategies include eating few foods as reported by Julia (#49) who says, “I eat the same foods day after day because I know they don’t make me sick.” Julia struggles with anorexia largely because her family does not help her find gluten free foods, so she avoids eating, fearing she’ll be sickened. It is easy to accidentally become anorexic when on an extremely restrictive diet (Ricca, et al., 2000). Remember the woman I met in the pet shop from Chapter 1 whose niece was diagnosed with celiac disease and then who became anorexic? That poor girl was dodging gluten in her home, with a family that did not embrace her needs, or help her. As a result, she developed anorexic behavior, where she feared food. Who can blame her? She was uninformed, and getting cross-contaminated on a regular basis. In this case, the dietary restriction triggered the disorder (Ricca, et al., 2000). Her hysteria to stay well caused her to fear food, and eat the very few items she considered safe. If her aunt is to be believed, the girl developed mental illness, likely due to malnutrition, coupled with the fear of what foods would do to her body. For her, it was a downward spiral, where one malady fed the other. An Alternative Attitude The diet culture seems to entail members “going on the diet” periodically throughout the year, only to “go off” at some point, and having to “go back on” in the future. This perpetuates feelings of “self-criticism” or “self-mastery,” depending on which end of the spectrum the dieter is on, that can potentially lead to disordered eating (Heyes, 2016, p. 140). This behavior affects all aspects of life. If a woman is dis-heartened by the size of her body, she is likely feeling out of control with her career, possibly with her marriage, and her personal relationships. She may even self-sabotage. The research I’ve presented from my study and from others points to the idea that women are more socially acceptable if they communicate discontentment with their bodies and other elements of their lives, rather than indicating a general state of satisfaction. Social norms teach us to “hate” those who are accomplished and happy and to “love” those struggling. Again, awareness is the first step to change. It is also very normal to be angry about the deprivation imposed by allergy-reaction-free diets. Eliminating major food groups means you will not eat like a “normal” person, and you will never be able to participate in routine acts of commensality, key to social interactions. If we are aware that cultural norms perpetuate the attitude of discontentment, we can take steps to change by saying to ourselves: “I accept my body as it is. I love my arms, legs, trunk, face, hair, feet, legs, butt, eyes, nose, mouth, hands – all of me! I am grateful for a functioning body that allows me to hike, bike, walk, run, etc. It is a gift. My body serves my physical needs and allows me to be a functioning individual. I am grateful for the hard-earned knowledge of a diet that makes my body thrive. It’s been a painful process and I’m happy I finally worked it out. I am sincerely grateful for being included in social and family food-related gatherings even though I don’t always participate in the act of commensality, because inclusion is paramount, and sharing time with loved ones is certainly more important than eating with them.” This is a good first step toward self-love and acceptance. Having a positive outlook on one’s body could permeate all other aspects of life. Recap and Moving Forward to Family “Vexing Venues” We have seen in these first few chapters how gluten is a mainstay in cultural practices ranging from wedding and religious rituals, to customs for holidays and celebrations throughout the year. Examples show how avoiding gluten can result in subjugation, scrutiny, and social isolation. Study participants describe how gluten ignorance or sexual biases sustained by medical practitioners prolong a proper diagnosis. We’ve seen how religious practices that require the consumption of gluten, even by those with celiac disease, further the dissonance for those told to avoid it completely. We’ve covered other influencers including the diet industry, which encourages a culture of scrutiny particularly with women who seek to boost their self-esteem, and station in life with a “fit,” attractive body. Sometimes our extreme dietary restrictions cause us to become “disordered” albeit with good reason, leading some professionals to deem us as “dysfunctional” even though we thrive on our dietary choices. Our gluten-centric culture forms ideologies or “truths” that affect our interpersonal relationships with family and friends -- the topic of the next chapter that focuses on how these ideologies play out in familial settings. Invitation to Continue the Conversation Would you like to work through the concepts presented in this book in more detail, perhaps developing a plan of how to address interpersonal and cultural issues caused from living the gluten-free lifestyle? Please visit www.alternativecook.com for information on workshops, or to schedule a consulting session with Dr. Jean Duane. Ideologies in Chapter 4 .divTable{ display: table; width: 100%; } .divTableRow { display: table-row; } .divTableHeading { background-color: #EEE; display: table-header-group; } .divTableCell, .divTableHead { border: 1px solid #999999; display: table-cell; padding: 3px 10px; } .divTableHeading { background-color: #EEE; display: table-header-group; font-weight: bold; } .divTableFoot { background-color: #EEE; display: table-footer-group; font-weight: bold; } .divTableBody { display: table-row-group; } Ideology Description Chapter Dietary Discretion When others are overly interested and judgmental about our dietary choices. 4 Sexist Scrutiny Sexist biases and expectations that may cause erroneous conclusions. 4 Size Surveillance The practice of surveying the size of women's bodies. 4 Living by the Numbers A preoccupation with weight, number of calories consumed, pounds lost, etc. 4 Discussion Question: Do you feel like your body is your enemy or friend? What causes you to feel this way? How have the dietary discretion, sexist scrutiny, size surveillance and living by the numbers ideologies discussed in this chapter impacted your life? Do you feel your body size is scrutinized by your friends/family? Copyright © 2021 by Alternative Cook, LLC References in Chapter 4 AdAge (2011). 90% of WW members are women. Retrieved February 24, 2020 from https://adage.com/article/news/weight-watchers-picks-a-target-men/227155 ANAD. (2020). Eating Disorder Statistics in US. Retrieved February 25, 2020 from https://anad.org/education-and-awareness/about-eating-disorders/eating-disorders-statistics/ Andretta, M. M. (2015). Performing struggles with food in everyday life. Cultural Studies, 15(6), 468-476. doi: 10.1177/1532708615614024 Arroyo, A., & Segrin, C. (2013). Family interactions and disordered eating attitudes: The mediating roles of social competence and psychological distress. Communication Monographs, 80(4) 399–424. doi: 10.1080/03637751.2013.828158 Ata, R. N., Bryant Ludden, A., Lally, M. M. (2006). The effects of gender and family, friend, and media influences on eating behaviors and body image during adolescence. Journal of Youth Adolescence, 26, 1024-1037. doi: 10.1007/s10964-006-9159-x Bedecarre, C. (2005). Tyranny of the carbohydrate: Feminist dietary drama. In L. Heldke, K. Mommer, C. Pineo, and W. Irwin (Eds.), The Atkins diet and philosophy: Chewing the fat with Kant and Nietzsche (pp. 213–229). Chicago, IL: Open Court. Bentley, A. (2005). Men on Atkins: Dieting, Meat and masculinity. In L. Heldke, K. Mommer, C. Pineo, and W. Irwin (Eds.), The Atkins diet and philosophy: Chewing the fat with Kant and Nietzsche (pp. 185-195). Chicago, IL: Open Court. Bordo, S. (1998). Hunger as ideology. Eating Culture 11-35. No doi. Bordo, S. (1993/2003). Unbearable weight: Feminism, western culture, and the body. Oakland, CA: University of California Press. Bordo, S. (1988). Anorexia nervosa: Psychopathy as the crystallization of culture. In I. 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Cole (Eds.), Lesbianism: Affirming Nontraditional Roles (pp. 27-39). Birmingham, NY: The Haworth Press, Inc. Fine, K. (2003). Early diagnosis of gluten sensitivity: Before the villi are gone. Transcript of talk given to the Greater Louisville Celiac Sprue Support Group. Retrieved November 10, 2018 from https://www.enterolab.com/StaticPages/EarlyDiagnosis.aspx Green, P. H. R., & Cellier, C. (2007). Celiac disease. The New England Journal of Medicine, 375(17), 1731-1743. doi: 1533-4406 Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Gudzune, K.A., Doshi, R.S., Mehta, A.K., Chaudhry, Z.W., Jacobs, D.K., Vakil, R.M., Lee, C.J., Bleich, S.N., & Clark, J.M. (2015). Efficacy of commercial weight-loss programs: An updated systematic review. Annals of Internal Medicine, 162(7), 501–512. doi:10.7326/M14-2238 Guptill, A., Copelton, D., & Lual, B. (2013). Food and society: Principles and paradoxes. Cambridge, UK: Polity Press. 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Samuels, E. J. (2003). My body, my closet: Invisible disability and the limits of coming-out disclosure. GLQ: A Journal of Lesbian and Gay Studies, 9(1), 233–255. No doi. Sarge, M. & Knobloch-Westerwick. (2017). Mechanisms of influence for weight loss in popular women’s health media: a content analysis of health and fitness magazines. Journal of Communication in Healthcare, 10(4) 260-272. doi: 10.1080/107538068.2017.1327128 Schultz, P. W., Nolan, J. M., Cialdini, R. B., Goldstein, N. J., & Griskevicius V. (2007). The constructive, destructive, and reconstructive power of social norms. Association for Psychological Science, 18(5), 429-434, doi: 10.1111/j.1467-9280.2007.01917.x Science Daily. (2011) Three out of our women have disordered eating. Retrieved from https://www.sciencedaily.com/releases/2008/04/080422202514.htm Scott, J. (2017). A fit, healthy body that is the best fashion statement. 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Feelings of built about food among college women. Appetite, 52, 531-534. doi: 10.1016/j.appet.2008.12.004 Stephens-Davidowitz, S. (2014). Is my son a genius? New York Times Retrieved from https://www.nytimes.com/2014/01/19/opinion/sunday/google-tell-me-is-my-son-a-genius.html Stone, S. D. (1995). The myth of bodily perfection. Disability & Society, 10, 413–424. Thornton, D. J. (2011). Neuroscience, affect, and the entrepreneurialization of motherhood. Communication and Critical/Cultural Studies 8(4), p. 399-424. Yamamiya, Y., Cash, T. F., Melnyk, S. E., Posavac, H. D., & Posavac, S. S. (2004). Women’s exposure to thin-and-beautiful media images: body image effects of media-ideal internalization and impact-reduction interventions. Body Image, 2, 74-80. doi: 10.1016/j.bodyim.2004.11.001 Yamasaki, J., Sharf, B. F., & Harter, L. M. (2014). Narrative inquiry: Attitude, acts, artifacts, and analysis. In Bryan B. Whaley (Ed.) Research Methods in Health Communication: Principles and Application. Oxfordshire, UK: Taylor & Francis. Continue to: Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together Back to: Gluten-Centric Culture: The Commensality Conundrum - Chapter 3 - Where Ideologies Collide In Public Settings

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

Celiac.com 09/22/2021 - "Vexing venues" where ideologies discussed in Chapter 2 collide in public settings such as work, the doctor's office, school, the grocery store, and church. They are termed "vexing venues" because we never know what to expect when our needs are constantly tested. Like at work, when confronted with gluten landmines on every surface; or at church where the communion bread gets mixed up with the gluten free; or at the grocery store where it is bewildering to find the simplest safe fare without a lot of knowledge. We face conundrums in venues that require us to pre-determine strategies to gracefully manage situations. The ceaseless toil to assure our needs are honored to avoid cross-contamination creates fatiguing anxiety even in places we wouldn't expect. For example, the doctor's office becomes a "vexing venue" not because we eat there, but because we are often faced with the gluten-doubt ideology (Note: Chapter 1 and Chapter 2 were previously published in the quarterly Journal of Gluten Sensitivity. Throughout the chapters, quotations are presented from participants, with pseudonyms, in Dr. Duane’s nation-wide study on the relational aspects of food sensitivities.), wrongly diagnosed, and face many subsequent visits yielding I-know-best diagnoses that leave us shell-shocked. "Vexing venues" are where ideologies (or given truths) collide in social settings. In this chapter, we discuss some of the more common public settings and how the ideologies identified in Chapter 2 play out when living the gluten-free lifestyle. Let's start with the workplace. https://sfd.celiac.com/uploads/monthly_2021_09/bizarro_05.webp.97025df6ae4d832ece75e344d190e56a.webp Figure 3.1 – Doesn’t Look Gluten free (Licensed with permission from Comics Kingdom (Bizarro).) Workplace The workplace poses a host of problems for those dodging gluten – from cakes to celebrate coworker's birthdays to pizza lunches – we are constantly wiping down surfaces to avoid being inadvertently contaminated. We face the able-body bias and gluten-doubt ideologies (defined in Chapter 2) regularly with coworkers. One person I met in my research, Alex (#1), suffers with various food sensitivities. Here he reports a situation where he was deliberately sabotaged by a coworker: I have my own area and my own desk where I cook and fix my food. Well, one of the guys over there doesn't really get my allergies. One day, he thought it was funny to go and eat a burrito and then go by my desk and literally take his hands and wipe them all over my desk, my plate, my chair, and all over my little area. He thought this was, you know, funny. Well, I ended up getting sick later. And we found out he did this on video camera, so we actually have it on camera. The average American spends roughly 47 hours a week at work (Gallup, 2014). Most start working between the ages of sixteen and eighteen (BLS.gov), and work until they are sixty-five years old. That means most of us spend almost fifty years in the workplace. The workplace is a vexing venue where we have little influence. Celiac disease is covered by the American Disabilities Act, but reality is that people fear being laid off or passed up for promotion and are conditioned to "keep your nose clean" and "don't make waves" in order to avoid calling attention to special needs. Just as the able-body bias ideology permeates the media as described in Chapter 2, it also permeates our work-place culture. Able-body bias ideology comes with the expectation that a worker is able, reliable, and fit. A fully-functioning body is a mark of success in life because it suggests that we can make a contribution to society (Corbin, 2003). It is risky to assert special needs in the workplace because it is a unique environment where we are forced to interact with people of all kinds, with different perspectives. Some honor our needs and others put them to the test. Alex's non-conforming behavior led to punishment. His coworkers are aware of his problem but when his co-worker rubbed the gluten from the burrito on his work area, his co-worker "punished" him for having special needs enacting the able-body bias ideology in the work venue. Being viewed as disabled, for dietary or physical needs makes coworkers treat that person differently, and sometimes it works to his or her disadvantage (Kumari-Campbell, 2009). Being sick occasionally is excused but being disabled often feels like a burden to hide in order to be accepted (Stone, 1995). Being able-bodied is so highly valued in the workplace that we strive to appear just like everyone sometimes at great expense to our health (Davis, 2005). Other participants report work-setting episodes such as Brooke (#23) who said, "My boss went to Human Resources and told them I wasn't a team player because I didn't show up to pizza lunches. He also asked me why I went to the bathroom so much." (She has frequent diarrhea from celiac disease.) She described how co-workers who know she has the disease left birthday cake on her desk, she suspected just to see what it would do to her, illustrating the gluten-doubt ideology. She felt coerced to quit her job. This encapsulates the absence of agency ideology because Brooke could not defend her needs with her boss or co-workers. Now at home, she says, "because I can no longer bake bread, I'm not holding up my obligations of my marriage." This illustrates how the able-body bias ideology affects both domestic expectations, as well as work outside of the home. (We'll discuss ideologies in the home-front more in Chapter 5.) Brooke experienced negative feelings at work, and remorse about not being an equal partner in her marriage, all due to the social aspects of living with celiac disease. Similarly, an office worker, Audrey (#61) describes when, "A lady at work who had just handled pizza grabbed my meal out of the microwave with her gluten-contaminated hands. I said, ‘No, don't touch that.' She gave me a dirty look." Audrey describes how she worries about being cross-contaminated just trying to work and to eat her lunch. It is wearisome and makes her feel she will never befriend anyone she works with. This exemplifies both the reluctant tolerance and gluten-doubt ideologies, where her co-workers comply with her needs, but make her feel isolated otherwise. On the contrary, office worker Lily (#59) had a positive experience. She describes how her company drew names for a holiday gift exchange. The woman who pulled her name bought a "throw away pan and made me a gluten free coconut cake." Lily was very grateful for her customized present that turned a "vexing" venue into a positive one. Offering an Elbow? Professional etiquette expectations further complicate the workplace where company representatives such as those in sales positions, or those meeting with executives from different companies are expected to shake hands. For business professionals, shaking hands "hello" and "goodbye" is customary, particularly in a sales situation where a vendor is meeting with a prospective customer. It's the way people "seal the deal." In fact it is such an important custom that when I attended sales school at IBM, the trainees practiced the method on each other. Company representatives are taught to stand up straight, look the person in the eye and to offer a firm (but not painful) handshake. For those with celiac disease, hands are a potential hazard if they have recently touched gluten. Consider the scenario where sandwiches and cookies are served around the negotiation table, and most of the attendees in the meeting have handled gluten-containing food. At the conclusion of the meeting, everyone would be expected to stand and shake the hands of those in the meeting signifying goodwill toward doing business together. Those with celiac disease or non-celiac gluten sensitivity, risk cross-contamination with each handshake. Allison (#35), a salesperson refuses to shake hands with anyone anymore because of her condition. In high-stakes negotiations where competitors are involved, or when something significant is being discussed, a handshake seals the deal. The requirement for handshaking in business settings is an example of the exclusionary etiquette ideology. Not participating in the hand-shaking custom, for whatever reason could cause ill will and awkwardness. Nobody trusts someone who won't shake hands and look you in the eye. Hand shaking is a custom practiced in many parts of the world. We've covered vexing situations in the workplace venue and seen how gluten related social issues come up in surprising ways. The next section discusses various ideologies at play during the diagnosis process in medical venues. Medical "Vexing Venues" Sorta scientific, and the I-Know-Best ideologies were discussed in Chapter 2. Here, we see how they play out in the medical venues. Medical venues have several stages or scenes. The first stage is when we make the decision to finally admit that there may be something wrong with our body and that we need to seek medical help. Facing that entails giving up the denial we've lived with for a long time. It requires that we ignore the horror stories we've heard from our friends about treatments that didn't go so well, or side effects from prescriptions that in hindsight didn't seem to outweigh the benefits. We face the first challenge by picking up the phone to make the appointment. The next step is the "preparation" required before going to the appointment. This may mean fasting for a period of time, and/or cleaning out our intestines beforehand. This process is unpleasant on many levels, and again takes some fortitude to endure, especially for those with compromised guts. The resolve to go through with it must be strong. One has to face these things with a sense of courage and determination. The next phase of this scenario is the actual doctor's visit when the examination takes place. During this phase we recover from the examination and wait for the results. Finally, the "diagnostic" phase, where we learn what the doctor thinks we have, and live with the consequences. We take the prescriptions, follow the diet or lifestyle plan, schedule suggested treatments, and when we realize we still have unresolved problems, we make our next appointment with another specialist to start the process all over. Taking Advice (Jean's story) Like many of the respondents in this study, getting diagnosed with celiac disease takes several tries for me as well. I always have a pain in my left side. Speculating on what causes it terrifies me. A twist? Plugged up? Oh my God, is it cancer? I worry about it for ten years before seeking medical help. Influenced by a national media campaign advising American's to visit the gastroenterologist, I finally confide in my doctor who sends me to a specialist for tests. Prior to arrival, the nice receptionist said she would send me a "prep kit" with instructions to do before my appointment. I was kind of excited about that – a kit coming in the mail! It sounded fun. I got the kit, which turned out to be just a set of instructions. It said, "Go to the store and buy the following things: 1 bottle of Polyethylene glycol (PEG) Laxative suppositories 1 Fleet Enema It said, "Drink only clear liquids 24 hours before the appointment, and start drinking PEG the night before the appointment." I ask the pharmacist what PEG was. He leads me to a big gallon jug of liquid. I feel like Alice in "Alice in Wonderland" when she read the bottle that said, "Drink this." What would that liquid do to me? My appointment is the next day. I drink tea all day, and am pretty starved before bed. That evening, I read the instructions on the big jug, which says, "Drink 8 ounces every 10 minutes." I think – let's see, there are 64 oz. in a gallon. Humm, I guess I'll be up 80 more minutes to drink this… I commence drinking. It has a citrus overtone and reminds me of those expensive infused bottled waters on the market today. A half an hour into my 80 minutes, I have a sudden "urgency" which involves a sprint to the bathroom. As it turns out, I don't leave the bathroom the rest of the night. I also don't finish drinking all of that liquid. The instructions also say, "Take the two laxatives, four hours prior to the appointment." Since my appointment was at 9:00 AM, this meant I have to get up at 5:00 AM (not my time of day) to take the two laxatives. This kit thing is sounding less and less fun. And even worse, it says, "Two hours prior, do the Fleet enema, at 7:00 AM." I'm starved and empty. I'm sitting in the waiting room. I notice the patients in the waiting room around me. In general, they are a mottled lot. They look like they are in various stages of an advanced disease, and it doesn't make me feel like this doctor cures people. If he did, wouldn't the people in the waiting room look healthier? The feeling I have while sitting here is similar to how I feel when on an airplane when there is bad turbulence. That sick fear of unknowing and being completely out of control. Having to "surrender" to the will of God, and the expertise of someone else. Plus I am frazzled, after a night of zero sleep, spasming muscles, and a totally worn out "back door." I say a silent prayer to give me courage. My thoughts drift to a community garage-sale fundraiser I volunteered at recently. A woman who was working there with me turned and said, "I just had a colostomy" and abruptly raised her shirt to show me her skin-tone plastic bag hanging from her abdominal area. I was so taken by surprise that I had to fight off the black tunnel vision that happens before fainting. I held on to the table of trinkets for sale, and tried to focus on staying "here." She describes how she went in for an examination and ended up with this. She says she is getting used to it, but it drastically alters her lifestyle. I wonder what will happen to me. In the waiting room, the nurse calls my name, and I steel myself to accept my fate as I follow her to the green-tiled examination room. Navigating the Medical Arena Participants provided stories of strife in the medical arena. Many were originally misdiagnosed with ailments including brain tumors, cancer, or IBS from doctors operating under the I-Know-Best ideology, before discovering they had celiac disease. For example, Emery (#45) reports being "sickly" her entire life, visiting many doctors to understand why. One doctor diagnosed her with pancreatitis. A different doctor diagnosed her with stomach cancer. She lived with this misdiagnosis, believing she had stomach cancer for months. Finally, a third specialist administered two separate endoscopies because he neglected to test for celiac disease during the first one, (likely because he thought it was rare). In fact it affects "2.5 to 3 million" Americans, but only 2% are currently diagnosed" (Fasano & Flaherty, 2014, Loc. 551). She was ultimately diagnosed with celiac disease. Once diagnosed, her new doctor offered no dietary guidance, so she relied on Internet research for information. She describes how her husband researched and purchased gluten free foods for her to eat, and how her joint pain, stomach cramps, and kidney stones went away when following the diet. Many respondents report having to figure out foods they could eat on their own. For example, after being diagnosed, Dustin (#46) reports that the dieticians could help with diabetes, but not with celiac disease. They could not provide him with a recommended diet, saying it was too complicated. This illustrates another aspect of the gluten-doubt ideology discussed in Chapter 2. Annette (#44) reports, "I was diagnosed while living in Puerto Rico. It is very rare there. The GI doctor asked me if I had family of European descent, and said, ‘I think you have celiac disease.' I was the first person he had diagnosed in his 50 years of practice." Is it likely that CD is that rare in Puerto Rico, or was the doctor only looking for one set of symptoms? Another person I interviewed, Jennifer (#6) said her doctor told her she tested positively for celiac disease. Thinking his only obligation was to provide a diagnosis, not how to live with it, he urged her to "have a nice day" and ended the appointment. Isla (#39) said she was more versed on gluten containing foods than the nutritionist she was referred to, describing how the nutritionist Googled the Internet during their conversation to answer her questions. Another respondent, Sarah (#31) reported losing 20 pounds the first three weeks after being diagnosed because she only ate fruits and vegetables, fearing any other foods. Sophie (#55) observes that doctors do not correlate physical maladies with dietary choices and says that they don't get nutritional training while in medical school. She thinks this is why they don't offer advice on how to live with celiac disease. In fact medical school curricula does not focus on nutritional training. "Medical schools in the US are still not ensuring adequate nutrition education, and they are not producing graduates with the nutrition competencies required in medical practice" (Adams, et al., 2010, p. 471). A new 21st century medical practice trend called functional medicine seeks to look at the entire body (Institute for Functional Medicine, 2015) and correlates many inflammatory diseases with the consumption of certain foods (Norling, 2012), but functional medicine doctors are rare. Furthermore, the diagnosis process is subjective. Goldberg (1968) reports a study where doctors were shown stomach X-rays to determine whether the patient had cancer. Unbeknownst to the doctors, they were shown the same shuffled ninety-six X-rays twice. The doctors diagnosed cancer on one occasion and looking at the same X-ray, sometimes did not diagnose cancer the second time. This is because ascertaining whether a growth meets the criteria is a subjective process. Similarly, medical tests for celiac disease are largely inadequate, often accurate only when the patient is in the later stages of the disease (Fine, 2003). My doctor told me that the best diagnostic tool is to eliminate foods for a period of time, and then reintegrate them while monitoring physical responses to each food. Thus, in many cases a medical professional never sanctifies a celiac disease diagnosis. Seventy-three percent of study participants reported a celiac disease diagnosis by a medical doctor, often describing years of suffering and misdiagnosis before learning they had it. A medical professional did not diagnose the other 27% of the study participants, which may cause gluten-doubt about their resolve to adopt the gluten free lifestyle. For example, a person may associate symptoms of brain fog or arthritis with gluten consumption and notice that symptoms subside on a gluten free diet. However, without a medical test to "confirm" the diagnosis, the person never feels certain about her condition. This was true for Hazel (#22). When family members judged her diet to be too extreme, Hazel felt pressured to get a medical diagnosis to put their skepticism to rest. She endured the "gluten challenge," which requires a person to "consume from 0.2 to 30 grams of gluten-containing foods daily for three months," a daunting and potentially dangerous proposition for someone with symptomatic celiac disease (Bruins, 2013, p. 4617). She reports: I had done the gluten challenge for a month, and I went to have the test done, and on the day of the test, I was pretty miserable by then, and I got to the doctor's office that was going to do it. He said, ‘Oh, I don't know exactly how to do that, and I didn't realize that's what they were asking me to do,' which kind of shocked me that he was not aware of it. Hazel surrendered to getting the test to assuage her family's doubt. She was plagued with symptoms during the month before the test, only to learn the doctor was not educated on how to do it. Complicating things further, doctors do not agree on the duration of the gluten challenge before testing, which may alter the results (Bruins, 2013). Several ideologies are at play in this scenario, including the lack of education of the doctor, the self-doubt and feelings of having to prove her disease to her family, and her family's able-body bias and gluten-doubt attitudes toward her resolve that she was ill. One reason doctors may not properly diagnose patients is because patients and doctors do not associate their symptoms with what they are eating. Madelyn (#37) says: I was having a lot of stomach issues, and a lot of pain, in one particular spot. That was the colon cancer. And I stopped eating and I started losing a lot of weight, and I couldn't function at all. But the celiac disease, I think I have possibly had all my life, because I have always had really bad stomach issues, as long as I can remember. I just never really connected it to food. I just always referred to it as episodes in my stomach. Because Madelyn didn't get sick immediately, she didn't associate her symptoms with her diet and neither did the doctors she visited. She just lived in a constant state of feeling ill. Many do not associate their symptoms with the ingestion of gluten (McCabe, et al., 2012). Every American Should Visit the Gastroenterologist (Jean's story continued) Upon arrival in the examination room, the nurse asked, "What time did you take your Valium™ this morning?" Valium? There wasn't a Valium in my "kit." Why do I need a Valium? (And why didn't they give me a prescription?) She sighed and instructed me to remove all of my clothes except my bra and to put on a paper robe with the backside open. Then she left the room. I sat in that cold room for what seemed like an hour. This was before smart phones and iPads and other gadgets of distraction and I didn't think to bring a book. Eventually, she returned with a consent form. Terms on that release included: If they perforated my colon, it wasn't their fault, nor were they liable for the outcome. If I got an infection from the examination (because the tube wasn't clean), they were not liable. While I perused the form, the nurse described to me the intricacies of cleaning that tube, saying it was a "pain in the ass." Was that some kind of pun? Talk about signing under duress! Shivering and nearly naked, I scanned the form briefly, and signed it. Next, the doctor and nurse came in, accompanied by a big machine on wheels, with a lot of dials and knobs and a dauntingly long rubber tube. The nurse busied herself putting what looked like petroleum jelly on the tube. Then the doctor showed me the end of the tube. He told me it had a light and a camera on the end, for seeing what's going on inside. "Just lay on your left side and put your knees up," he said. Before I knew what was happening (which was probably a blessing), the doctor proceeded to stick that tube in my sore back door! He tried to distract me by showing me the screen, and what it looked like inside, but I couldn't focus on that. I was too preoccupied with how it felt to have that long tube zig-zagging through my guts. Mostly, I wanted to get up and run, but I was frozen there, shaking with cold and fear. When he got to the place that hurts all of the time I said, "That is where it hurts" and he started taking biopsies. Turns out there are little nippers on the end of that long tube. He didn't mention the nipper feature earlier. Now it hurts WORSE! He also didn't mention that the little tube pumps air into your guts. Lots and lots and lots of air. Gazing at the screen, I was surprised at how pink and perfect it looked inside there. And dark. The headlight on the tube illuminated a long sinuous tunnel. I remember thinking "This would really be interesting if it wasn't ME HERE NOW." For some reason, something the minister had said on Sunday popped into my head. He said, "Heaven is right here on earth." This wasn't heaven! I felt like the live frog being dissected in biology class. Suddenly, someone knocked loudly on the door. An angry man started yelling, "Doctor, I have more questions… we weren't done." Then the door opened. Yelling Man barged in, and there I was on the table, naked except my bra with that tube inside me. I was so scared and traumatized by the man at the door that I started crying. I prayed, "Please God, let this be over soon." The doctor quickly pulled the tube out. Did the nipper catch the side of my intestine? It felt like my guts were being pulled out along with the tube. I looked down there… and thankfully, everything was intact. After all of that, he said the following: "There's nothing wrong with you. You need to see a psychiatrist… people don't cry in these examinations." His harsh dismissal of me made me cry more. I felt violated and scared. Plus the air he had pumped into my guts made me double up in pain. I wiped the remaining petroleum jelly from my inflamed back door, quickly put my clothes back on, and scurried out of that office. And all that air started to come out. I painfully farted for 12 hours after that. It was miserable. I was frustrated and humiliated. It had taken ten years for me to get the nerve to seek help for the constant pain in my side and for my embarrassing "gastric disturbances," and this is what happened when I finally did it. I left bewildered and invaded -- knowing nothing more than when I came. Still with the pain in my left side, still with frequent "disturbances." But, now I knew firsthand what a sigmoidoscopy was, and what it took to prepare for it. One thing was sure. I wasn't in a hurry to go back for another one. The Examination Room Participants who were initially misdiagnosed lived for a period of time under one set of assumptions, reestablishing identity and dealing with the emotions of one diagnosis, while family members also adapt to the news, only to discover that the diagnosis was incorrect. For example, Sally (#3) was initially diagnosed with a brain tumor. She said, "I had neurological issues, vertigo, and it was hard for me to see." The physician's assistant erroneously correlated her neurological brain fog to symptoms consistent with a brain tumor using the sorta scientific ideology. Sally describes the diagnostic meeting with the physician's assistant as difficult because her memory was so bad at the time, she could not remember anything. Her husband was there too, and went into shock when the diagnosis was given. She and her husband "went through hell" as they processed the idea of a terminal brain tumor. Sally continues, "After about six months of brain scans that came out fine, they told me to go gluten-free but they refused to do the test [for celiac disease] because there are so many false negatives." She and her husband had adjusted their narrative during those months to accommodate the brain tumor, only to discover after six months that she did not have a brain tumor at all. In time, the gluten free diet alleviated her symptoms. A misdiagnosis adds to confusion and self-doubt, and causes others to over-scrutinize those with celiac disease. Similarly, Ava (#7), desperate for answers, lived with the same misdiagnosis of a brain tumor for years before being diagnosed with celiac disease. She describes how years of suffering with mysterious maladies culminated in this story: I could feel myself not remembering things. I was crying at work and crying on the way home, and I just had a mental breakdown. I went to the doctor and told him what was going on. He said, ‘Well, that's a mental thing, and if you feel like you are losing your faculties, you have to go to a psychologist or psychiatrist.' I said, ‘Well, then send me to one please.' At that point, I was ready to go to the ER and tell them that I am suicidal. I said, ‘I can't do this anymore. Something is physically wrong with me and you guys need to fix that.' The doctor said, ‘Go to this clinic.' The doctor there at the clinic said, ‘You are almost the worst case I have ever seen.' Three days later, I had the endoscopy and was confirmed to be celiac. Ava reveals how her self-identity shifted with the various diagnoses she received, from one with a brain tumor, mistrusting everything she did at work, to finally quitting her job and checking into the clinic where she was accurately diagnosed with celiac disease. She happily reports her brain-related problems diminished on the gluten-free diet. Another doctor misinformed Allison (#35) about her fertility prospects once diagnosed with celiac disease, saying she was infertile. She reports, "We grieved not being able to have a bigger family and wanted at least one more child. We were okay with the miracle that we had with my son, and with just being a family of three." She lived with this knowledge for years, weighing alternatives such as adoption with her husband. She continues with this story: Then I got that positive on the pregnancy test, and I was ticked off. Let me be honest, I was not over the moon. I was pissed off. I was madder than a hornet that I was pregnant. At five months, I was put on a Zofran pump because I was so violently sick. I just could not keep anything down, and I was losing weight rapidly. I was in and out of the hospital to get fluids through IVs. It was really, really tough. And then close to the beginning of the third trimester, I started to feel better, and I felt like I had been selfish. God gave me another chance of having another precious life, and to have another child. And ever since then, I'm just thankful. I'm thankful that God gave me a boy and girl, and my family is complete. Allison describes her mindset when she thought she could no longer have children, and then her surprise and anger when she discovered she was pregnant. Her gradual acceptance transformed her identity into being the happy mother of two children, drawing on her religious beliefs for strength and acceptance. William (#60) reports his well meaning but misinformed doctor exclaimed, "You are the first person I've diagnosed with celiac disease! Now you need to find out which one you are sensitive to – barley, or rye, or wheat." Of course, we know this was bad advice because gluten is found in all three (as well as in some oats and spelt). The medical examination room venue yielded misdiagnoses for many participants, often coupled with erroneous information from I-Know-Best ideologies enacted by medical professionals. I also experienced a misdiagnosis that would have drastically altered my body if I had proceeded with the advice one surgeon gave me. Suggested Surgery (Jean's story continued) I realize in 1986 that I am allergic to dairy and eliminate all foods containing it. I am finally rid of the runny nose, constantly having to clear my throat, the bloating, and regular vomiting from dairy consumption. Nevertheless, I still don't feel good. I feel a little ill all the time – nothing too serious, just a general feeling of malaise and a constant dull pain in my intestine. And I have bad gas every day, to the point where it interferes with my life. Again, I seek help from the medical community with a new doctor. Doctors seem to have three things in their bag of tricks to fix you. If they can't kill it with chemicals, eradicate it with fire or radiation, when you keep going back with the same complaint, one day, they suggest going under the knife. After several false starts, I finally find a gastroenterologist I like and go back several times over the years with the same complaint. He prescribes drugs that I take regularly for the constant intestinal pain, gas, bloating, and general feeling of malaise I experience daily. Finally on one visit, he says, "You know, surgery might be the answer" and refers me to the Very Highly Recommended Surgeon (one I'd send my mother to, the gastroenterologist told me). Dreaming of being "fixed" and normal after years of agony is seductive. While making the appointment on the phone, the receptionist tells me the tests he does will be awful (hey thanks for the warning, at least!), but never tells me exactly what to expect. By this time, various specialists had stuck tubes in both ends (down my throat and where the sun don't shine), while awake. Really. What could be worse than that? Why do I keep believing there's a benign answer to that question? While waiting in the cold examination room (why can't they turn up the heat?), wearing nothing but a piece of paper, sitting on a vinyl, crunchy, paper-lined examination table, I overhear the "very highly recommended" surgeon talking to another woman in the examination room next door, who is begging him to do a third surgery on her intestines – saying that she still isn't fixed. I wondered, "What could possibly cause her to beg for a third surgery on her intestines?" Finally, the surgeon comes in the room and introduces himself. He instructs me to sit on a toilet while he takes a hand mirror and watches me "push" as if to make a bowel movement. If you're wondering, this is exactly as humiliating as it sounds. I comply because I am desperate to do whatever it takes to be "normal" again. It is very embarrassing. And that is a masterpiece of understatement. Who thinks of these tests? Can't you just envision the gastroenterologists at their annual meeting sitting around yucking it up and thinking of the most humiliating tests they can do to a patient? Somebody probably got an award for thinking of the "push" test. After looking at my set of 30 X-rays, he tells me I have a long, twisted sigmoid colon, which is likely the reason for my afternoon gas. By reducing the length of the colon, we would eradicate the gas, because food would be eliminated before it fermented. "Fermentation of food in the intestines is what causes gas," he says. Then he explains that surgery will entail opening the abdominal cavity, cutting the intestines and re-attaching them -- one membrane at a time. It is major surgery that would take months of recuperation. He said intestinal surgery is very dangerous for the surgeon, the nurses and interns and the patient because the intestines' contents are foul and poison. He said if that same foul poison enters the bloodstream, the patient could die. If the doctors and nurses are contaminated by the contents of the patient's intestine, they can also get very sick or die. Suddenly I feel preemptively guilty, for something that hadn't even happened. I listened to the surgeon as he said that after the surgery, I'd have a "new normal." Know this: "New Normal" is a RED FLAG TERM in the medical industry. Do not take it at face value! "New Normal" means you won't be "normal" like everyone else – you'll have something entirely different that is normal for you. He explained that my "new normal" could mean a colostomy bag for the rest of my life! And he'd consider that a successful surgery. That is not successful in my book. My "new normal" could mean that I have to poop four times a day – and urgently – and he'd would call that a successful surgery, too. My "new normal" could mean I have to wear an adult diaper! Again, no thanks. My normal is pretty messed up, but those "new normals" he suggests could happen after surgery sound worse. I think about the surgery long and hard. Maybe it is because I over-heard that conversation with the woman and the third surgery, but something tells me not to proceed. It is clear that when he says "new normal," it means –run like hell. Ideologies Convolute Thinking It takes an average of twelve years to be properly diagnosed with celiac disease in America (Green & Jabri, 2003). But what those statistics don't tell is the process we endure in order to be diagnosed. This is precisely why I prefer qualitative rather than quantitative analysis. Qualitative analysis illuminates the backstory. Gluten-doubt permeates the medical industry with many doctors still thinking celiac disease is rare, or that the effects of gluten are imagined. Couple the gluten-doubt with the I-Know-Best ideologies (discussed in Chapter 2), and the fact that doctors are not properly trained on the affects gluten has on the body, and you can understand why there are so many medical horror stories conveyed by study participants. In my interviews, I asked the question, "tell me about your gluten-free lifestyle," and without prompting, many people launch into the trials of being diagnosed, often describing how it took years, and how they took medications that were entirely wrong for those with celiac disease, causing further problems. Many report being erroneously diagnosed with irritable bowel syndrome (IBS), translated by Liza (#68) as: "I have no idea." Participants describe how the medical "vexing venue" is fraught with misdiagnosis, and misinformed doctors. They describe feeling at the mercy of the doctor's ability to listen and to spend the time required to diagnose them properly. It is very hard to find a doctor that listens and treats us as individuals, and who has been trained to identify the many ways that gluten sensitivity manifests in the body. Ultimately, we have to take a lot of initiative in our healing process, hopefully guided by well-trained, well-meaning medical professionals. In this section, I've illuminated the medical vexing venues with my own stories and those of participants. Clearly, work needs to be done to better train medical professionals to diagnose gluten-related disease. Perhaps you have a story to share. Please share your comments at the end of this chapter. Next, let's examine the school environment. Forbidden to Attend Pizza Parties on Campus Perhaps the most socially isolating experience illustrating the able-body bias ideology is a person living with celiac disease at an institution such as a college campus. Large public institutions must accommodate the needs of those with celiac disease according to the 2012 American Disabilities Act Amendment, but how those needs are accommodated varies widely. Sarah (#31) describes her experience as a first-year student at college. The college did not have certified gluten-free dining facilities and offered her a separate dorm room with a full kitchen. The dining services director told her it was up to her to "navigate it." She was banned from on-campus dining facilities and reported feeling isolated and "singled out." Sarah said, "I couldn't participate in a lot of on-campus traditions because I was the only one that I knew who was gluten-free." She continues: I would always plan my classes around when I would have time to go back and eat in my dorm, and then go back out to class. So, I would have to navigate trying to find on-campus food, and plan it out that way. I guess a lot of my meals were spent alone. It was pretty disappointing my first year in college. This experience limited her exposure to peers during times they would have formed bonds, such as meals and other college-related activities. This is an example of a person inadvertently being punished because of her physical needs in defiance of established college commensality (eating together), norms. Sarah was forbidden to attend pizza parties or to enter dining halls where her fellow-students ate because gluten was present. Luckily, as she continued in her college career, she met others with celiac disease and made friends with whom she would share an apartment in subsequent years. Cara (#53) describes how she tried to work with her son's school to serve gluten free foods. The school refused to work with them, and after trying for a year, she decided to homeschool her son. She felt the diagnosis for herself and her son caused them to be more involved together as a family. Homeschooling was a positive experience for her, however it may not be possible for everyone who needs to be accommodated with gluten free fare while attending school. Later in this book, I'll discuss in more detail the American Disabilities Act (ADA) and how celiac disease is considered a disability covered by the Act, requiring public institutions to comply with gluten free requests. Grocery Store Setting – I Just Want to Buy Food! Has a quarter of the U.S. population been fooled by a $15 billion push to endure the stressful task of avoiding gluten? —Bethany Econopouly & Stephen Jones, 2017 Quotes like this epitaph cast gluten-doubt on the need for safe gluten free foods to be carried in grocery store chains. When first diagnosed, we experience a mix of feelings – relief at discovering the culprit, and doubt from all of the cultural influences (discussed in Chapter 1 & Chapter 2). Study participants report turning to the Internet to figure out what they can eat. There are a lot of other names for gluten such as avena (another word for oats), durum, edible starch, fu, glutamate, glutamic acid, hordeum, hydrolyzed plant protein, job's tears, kamut, malt, MST, modified food starch, tricale, osecale, triticum… It is paralyzing, especially when reading ingredients and realizing that many contain some form of gluten. The safest foods are not the processed foods in the aisles, but rather the foods on the edges of the grocery store such as meat, vegetables, fruits, eggs, beans, and nuts. These foods are naturally gluten free. The hardest question for a person with celiac disease to answer after first being diagnosed is, "What is safe for me to eat?" Misinformation is overwhelming. Bananas are labeled gluten free. This is very confusing to the newly diagnosed, because bananas are naturally gluten free, but by labeling them, it begs the question, "Are these not gluten free all the time?" On the other hand, packaged dates aren't always gluten free, because some dates are coated with flour. So are some frozen shrimp – another food that you would expect to be naturally gluten free. Rotisserie chickens in some stores contain both gluten and dairy, as does fake crab. Going to the grocery store after being diagnosed can be daunting, because labels have to be read and deciphered for the many words that mean gluten. Lillian (#58) lives in a small town. When she was diagnosed, she went to the grocery store and found a limited gluten free section. She cried because there were few selections, and said, "I felt like an outcast." Because of the lack of foods for those with special needs, the grocery store reinforces the able-body bias and gluten-doubt ideologies. Gluten is in many processed foods (Bramall, 2000) and most grocery stores in every size town contain more processed foods than foods that aren't processed. This makes the grocery store a "vexing venue" for those with celiac disease or food sensitivities. Some argue that the USDA's recommendations for Americans to consume six to eight servings of grains a day stem from the need to sell government subsidized foods. "Because the USDA's function is largely the promotion of agriculture and agricultural products, there is a clear conflict of interest inherent in any USDA claim of healthful benefits arising from any agricultural product" (Braly & Hoggan, 2002, p. 6). The U.S. government subsidizes highly allergenic foods such as wheat, soy, corn, dairy, and peanuts (Mercola, 2012), totaling $13.2 billion in fiscal year 2017 (Forbes, 2018). Further, the Big Food industry uses these ingredients in foods on the interior shelves in grocery stores, and for pre-packaged foods widely served in restaurants and institutions. Consider that in 2013, baking mix and prepared food production generated $21 billion in the U.S. alone (Statista, 2016c); sugar, $10 billion (Statista, 2016d); frozen food, $96 billion (Statista, 2016e); ice cream, $8 billion (Statista, 2016f), juice, $23 billion (Statista, 2016g); snack food, $33 billion (Statista, 2016h); cookies and pasta, $24 billion (Statista, 2016i); candy, $77.5 billion (Statista, 2016j); chocolate, $16 billion (Statista, 2016K); margarine and oils, $69 billion (Statista, 2016l); bread, $39 billion (Statista, 2016m); and dairy products $98 billion (Statista, 2016n). Collectively, the Big Food industry represents "$2.1 trillion in annual sales, 14 million jobs and $1 trillion in value to the U.S. economy" (Moss, 2014, Loc. 3901). These subsidized foods are the primary ingredients in processed foods (Franck, Grandi, & Eisenberg, 2013), and Americans purchase processed foods 75% of the time (Poti, Mendez, Ng, & Popkin, 2014). It is no wonder Lillian felt like there were few safe gluten free foods for her to purchase. Further, restaurants and institutions rely on these processed foods, leaving few gluten free choices in these public venues. "Popular beliefs and politically motivated promotion, not science, continue to dictate dietary recommendations, leading to debilitating and deadly diseases that are wholly or partly preventable" (Braly & Hoggan, 2002, p. 6). The economy's reliance on these ubiquitous, subsidized foods may be one reason why those with allergies to them feel there are few "safe" food choices. We will next visit how the church becomes a vexing venue for many with gluten sensitivities. Communion Makes Me Sick In Chapter 2, we observed ideologies or "truths" derived from religious beliefs and customs. Here, we'll discuss how these "truths" play out in the church environment. The church venue poses complicated problems for those with food sensitivities and celiac disease when it comes to taking communion, and at social gatherings after church. Communion, as discussed previously, is handled differently depending on the church's point of view, where some churches are more accommodating than others. The after-service pot luck also presents a conundrum for those who wish to be sociable, and sit around the table with fellow church-goers, without calling attention to dietary restrictions, or being cross-contaminated with foods that have unknown ingredients. The church is a vexing venue faced regularly by those with celiac disease. Communion is a sacrament shared in many Christian churches. The bread is sacred and the Pope's I-Know-Best ideologies cause churchgoers to develop strategies to sidestep the situation. The gluten-containing Eucharist has caused problems for lots of folks I interviewed, including Isla (#39). She shared a story about her decision: Communion in my church has to be leavened bread (challis bread). It is hard for me to take communion. It gets into my stomach, and I feel sick from the bread after the service. But it is the body and blood of Christ. It is a two-inch by two-inch square, washed down with the wine, becoming part of you. I can't have that because the bread and wine body and blood of Christ from the chalice is hard to have, but I need to have it because you have to have communion. This is the biggest challenge for me. Isla is a long-time parishioner at a church that follows the Pope's decree to the letter; thus, a gluten free host is not allowed. She feels pressured by her fellow churchgoers to participate in the sacrament with them, overwhelming her desire for health. She complies every Sunday morning, only to feel ill every Sunday afternoon. Isla is both emotional and desperate. She understands that continuous gluten consumption may cause other autoimmune disorders. Isla worries about it, but she also feels the need to nurture her soul by taking communion. She lives with a spiritual conundrum of balancing her religious beliefs, and the I-Know-Best and bread is sacred ideologies with her physical disorder, feeling too uncomfortable to reject the "body of Christ" in the church venue. Similarly, Claire (#25) reports, "I am Catholic. And for the longest time I didn't take a host at communion. And we had some deaths, and some other issues, and I just really wanted to." She went on to describe how she took communion at her relative's funerals, knowing it contained gluten, and becoming sickened afterward, but feeling obligated to participate in this important sacrament to commemorate the lives of her loved ones. In Protestant religions, bread represents the pure flesh of Christ. The Pope's decree mandates the requirement to keep the recipe for bread pure by saying, "It is a grave abuse to introduce other substances, such as fruit or sugar or honey, into the bread for confecting the Eucharist" (Vatican, 2017). Gluten free bread recipes require substitutions such as guar gum and/or xanthan gum to replicate gluten's elastic texture, although if baked in small portions, these additives can be avoided. The Pope could potentially consider xanthan or guar gum "foreign material." Vivian (#51) was determined to partake of communion in her church and describes how she was able to procure bread from the Sisters in a specific convent, and the process she endured to ensure a gluten free host: When first diagnosed, I got low-gluten host from the Sisters. It was rigmarole because the Priest has to remember and I can't go to Holy Communion anywhere else, like at a wedding or a funeral. It is the most isolating thing about having celiac disease. Risking ingestion and feeling pressured to participate in communion, Vivian mail orders a special "low-gluten host" that was sanctified by the church until the most recent edict. Nevertheless, her church continues to serve it to her. She arrives at church an hour early every Sunday to have it blessed and situated on the alter so the Priest can reach it when she comes up in line. She said he sometimes forgets, causing her to hold up the line to redirect him when others behind her are ready to take communion. She expresses feelings of embarrassment for disrupting the regular process. Though not implemented (yet) she suggests a hand gesture in the shape of a "C" to silently indicate her need for a gluten free host. This way she would avoid holding up the line. Both Isla and Vivian have come to terms with these able-body bias, bread is sacred and I-Know-Best ideologies by keeping a low profile and consuming gluten, potentially sacrificing their long-term health. Their choice also illustrates the absence of agency ideology because they "go along to get along" rather than assert their needs. If the Pope implies through his gluten-containing host that a little won't hurt you, this I-Know-Best ideology presents a dilemma for someone with celiac disease who must decide whether to risk illness from gluten consumption or renounce sacred rituals by non-participation. Additionally, following the word of the Pope may cause pious family members to question the individual's resolve to eliminate gluten from his or her diet. If it is OK to consume it in church, why isn't it fine for Sunday dinner? When faithful families gather in the act of commensality, they reenact the Lord's Supper, where Jesus ate the last meal with his disciples, breaking bread and drinking wine. The Lord's Prayer states, "Give us this day our daily bread." The word "bread" could be taken literally to refer to a wheat-based baked good, rather than metaphorically meaning "food." Bread, for some in Western civilization is a sacred food that must be consumed every day in order to be a "good Christian." Terrifying Pot Lucks Potlucks are common community-sharing events in churches. Individuals with severe dietary restrictions may opt to stay silent and hungry in certain social situations, in order to avoid drawing attention. For example, Mila (#10) stopped attending church potlucks noting, "I am absolutely terrified of going out to a potluck. There is no way to eat safely." Avery (#11) reports a hurtful comment from a parishioner when she opted not to take from a dish. The churchgoer mechanically echoed the gluten-doubt ideology saying, "A little won't hurt you," to which she clapped back, "It is rat poison to me, and I don't want labor pains." Cara (#53) tells people who try to push gluten-containing foods on her that if she consumes it, "It's like choosing to have the flu for two to three weeks." Another respondent, Mila, said, "it took me two or three years to realize that cheating on the diet was just not worth it. It doesn't matter how tasty it is." To stay safe, both Mila and Avery quit attending social events centered on food, choosing social isolation rather than risking cross-contamination and confrontations to defend their health. Madison (#16) says, "At church, its easy to get my feelings hurt when I'm unable to participate in the social aspect of eating together. Potlucks are difficult at best." Kevin (#33) describes how potluck foods at church initially brought parishioners together, and now he feels it "tears us apart" because he cannot eat the foods together with the congregation. Stella (#21) reports initially when she brought gluten free foods for church refreshments, nobody would eat them, but now they ask her for the recipe, a "win" in the church venue. Her fellow churchgoers ultimately embraced her foods and showed love and compassion by asking her to share her recipes. By identifying the ideologies in "vexing venues" that force us to comply with social practices that do not serve us such as taking gluten-containing communion, or eating foods at a potluck, we are taking the first step to affect a positive change. Jumping Off of the Conveyor Belt (Jean's Story Continued) Sometimes it feels like I'm just part of a big medical machine. I suffer for years, seeking help from many specialists, feeling like they holler "next" as soon as they make their "pat" prognostications. I never feel like any doctor looks at me wholly as a unique individual. Several years after going to the Highly Recommended Surgeon, my symptoms get worse. In addition to the ever-present digestive problems, the rash I describe in "The Diagnosis"(Chapter 1) starts on my chest one day and spreads throughout my entire body. It takes six weeks to fully heal, only to come back again and again. I go to many doctors – allergists, dermatologists, gastroenterologists, internal medicine specialists, even gynecologists! They prescribe a conglomeration of chemicals such as Ambien™, Temazepam™, Rozerem™, and Flurazepam™ to try to induce sleep. They give me Ativan™, Lorazepam™, and Alprazolam™ to reduce anxiety. Valium™ was prescribed to relax my intestines of the constant pain from the gas, and its psycho-tropic side effect makes me not care if I fart (which is even more mortifying in the long run)! I am prescribed Prednisone™ a steroid for the rash, histamine blockers (Tagamet™ and Zantac™) for the itching in the daytime, and antihistamines (Hydroxyzine™) for itching in the nighttime. A dermatologist prescribes Valtrex™, a drug prescribed for herpes. (I don't have herpes!) One doctor prescribes Dapsone ™. I declined it after reading the side-effects, because the side-effects of these drug-cocktails are unspeakable already. It feels like these medical specialists are firing blindly with random drugs to alleviate the symptoms but not seeking the underlying cause. Not one of them asked me about my diet. Finally, I visit a doctor who says, "I WILL figure this out. It won't be fun, but I will do it." There are a series of tests over the next two months involving more needles, tubes, X-rays – the usual. He said I passed all but the Celiac Panel blood test. After forty-eight years of suffering, I finally learn "gluten" is causing the terrible rash and my gut problems. "Gluten, he said, is a protein found in wheat." I left my doctor's office without a clue of what "gluten" really was, or how to avoid it. I wonder, "Did they cover gluten in cooking school?" I go back to my notes and discover, yes, it was the basis for the seitan made by the teacher one day. I remembered putting it in my mouth and reacting to it like I did when I once ate a chicken liver at a wedding. I couldn't get it out of my mouth fast enough. It absolutely repulsed me. I should have been more aware -- that was a big clue! Like Superman and kryptonite, I have finally identified my nemesis and jumped off the medical conveyor belt. In time, my intestines began to function normally (and not a "new normal" but the way they are supposed to work!). Dietary changes (not drugs) mitigated all of the problems that the very Highly Recommended Surgeon proposed fixing with life-altering surgery. Moving Forward In this chapter, we discussed public settings such as work, school, the doctor's office, grocery stores, and church that become "vexing venues" for us to confront dominant ideologies. When these useless "truths" are articulated, and "vexing venues" are identified, we have more power to assert our agency, to reject compliance, and to develop strategies to live a healthier life. Strategies developed by study participants will be shared in later chapters but moving forward in the next chapter we'll talk about some of the social elements that confront women specifically as they navigate a restrictive diet. If you would like to have more in-depth discussions on this and other chapters, please sign up for a fee-based workshop or an individual session with Dr. Duane by visiting www.alternativecook.com. Forum Discussion Questions: What "vexing venues" have confronted you as you navigate the gluten-free diet? What was the process you went through in order to become diagnosed? How do you deal with workplace or school traditions to avoid gluten contamination? Copyright © 2021 by Alternative Cook, LLC Continue to: Gluten-Centric Culture: The Commensality Conundrum - Chapter 4 - The Body Battleground Back to: Gluten-Centric Culture: The Commensality Conundrum - Chapter 2 - Ideologies In Our Gluten-Centric Society ___ References in Chapter 3 Adams, K. M., Kohlmeier, M., Powell, M., & Zeisel, S. H. (2010). Nutrition in medicine: Nutrition education for medical students and residents. Nutrition in Clinical Practice 25(5) 471-480. doi: 10.1177/0884533610379606 BLS.gov. (2021). Retrieved from https://www.bls.gov/cps/cpsaat08.htm Braly, J., & Hoggan, R. (2002). Dangerous grains: The devastating truth about wheat and gluten, and how to restore your health. London, England: Penguin Group. Bramall, J. (2000). Living with Coeliac Disease. British Medical Journal, 321(7269). 1165. doi: no doi. Bruins, M. (2013). The clinical response to gluten challenge: A review of the literature. Nutrients, 5, 4614-4641. doi: 10.3390/nu5114614 Corbin, J. M. (2003). 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Virginia: Morgan James Publishing. Poti, J. Mendez. M., Ng, S., & Popkin, B. (2015). Is the degree of food processing and convenience linked with nutritional quality of foods purchased by U.S. households? American Journal Clinical Nutrition 101, 1251-1262. doi: 10.3945/ajcn.114.100925 Statista (2016c). Revenue of baking mix and prepared food production in the U.S. from 2008 to 2013. https://www-statista-com.du.idm.oclc.org/statistics/290468/revenue-of-baking-mix-and-food-production-in-the-us/ Statista (2016d). Revenue of sugar processing in the U.S. from 2008 to 2013. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290452/revenue-of-sugar-processing-in-the-us/ Statista (2016e). Revenue of frozen food wholesaling in the U.S. from 2009 to 2013. https://www-statista-com.du.idm.oclc.org/statistics/294700/revenue-of-frozen-food-wholesaling-in-the-us/ Statista (2016f). Revenue of ice cream production in the U.S. from 2008 to 2013. https://www-statista-com.du.idm.oclc.org/statistics/190426/top-ice-cream-brands-in-the-united-states/ Statista (2016g). Revenue of juice production in the U.S. from 2008 to 2013. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290553/revenue-of-juice-production-in-the-us/ Statista (2016h). Snack foods in the U.S. Statista Dossier. https://www-statista-com.du.idm.oclc.org/study/15079/snack-foods-statista-dossier/ Statista (2016i). Revenue of cookie, cracker & pasta production in the U.S. from 2008 to 2013. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290454/revenue-of-cookie-production-in-the-us/ Statista (2016j). Revenue of candy production in the U.S. from 2008 to 2013. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290454/revenue-of-candy-production-in-the-us/ Statista (2016k). Revenue of chocolate production in the U.S. from 2008 to 2013. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290457/revenue-of-chocolate-production-in-the-us/ Statista (2016l). Revenue of margarine and oils in the U.S. from 2008 to 2013. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290448/revenue-of-margarine-and-cooking-oil-processing-in-the-us/ Statista (2016m). Revenue of bread in the U.S. from 2008 to 2013. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290448/revenue-of-bread-production-processing-in-the-us/ Statista (2016n). Revenue of dairy product production in the U.S. from 2009 to 2014. Retrieved from https://www-statista-com.du.idm.oclc.org/statistics/290468/revenue-of-dairy-product-production-in-the-us/ Vatican. (2017). Letter to bishops on bread and wine for the eucharist. Retrieved from http://en.radiovaticana.va/news/2017/07/08/letter_to_bishops_on_the_bread_and_wine_for_the_eucharist/1323886

Celiac.com 10/30/2018 - Products with “gluten-free” were unknown just 20 years ago. Now, driven by new labeling standards and demand that far exceeds those on medical diets, the market for gluten-free foods is expected to hit $2.34 billion in sales by 2019. That’s more than double the 2014 level. How has the influx of new gluten-free products in the last few years changed the experience of people with celiac disease? A team of researchers recently set out to investigate how the recent proliferation of the gluten‐free industry has affected individuals living with celiac disease, with a primary focus on their social lives and relationships. The research team included J. A. King, G. G. Kaplan, and J. Godley. They are variously affiliated with the Department of Sociology, Faculty of Arts, University of Calgary, Calgary, Alberta, Canada, and the O’Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada. The team employed interpretive phenomenology for study design and analysis. Team members held semi‐structured interviews with 17 adults with clinically diagnosed celiac disease in Calgary, Alberta. They recorded the interviews and transcribed them for analysis. These 17 Canadians living with celiac disease reported that they perceive the growth of the gluten‐free industry as a "double‐edged sword." Although they are grateful for more readily available, more palatable gluten‐free options, they are increasingly faced with misunderstandings about the severity of celiac disease as a perceived result of many non-celiac disease individuals subscribing to the gluten‐free diet. Participants also felt they may be perceived or even perceived themselves differently, such as "high maintenance," etc. To help mitigate these social ramifications of following the gluten‐free diet, participants utilized various strategies. According to the study’s authors, simply telling celiac patients to adopt a gluten‐free diet ignores the regular challenges faced by those patients. The authors of the report are calling for doctors to consider the indirect burdens for celiac patients who must adopt a gluten-free diet when making their recommendations. But how? The report says nothing about what exactly doctors are supposed consider, or what they should tell patients about the challenges of a gluten-free diet. People with celiac disease probably do need more information up front as they begin to follow a gluten-free diet, but clearly far more input and study are needed. This study tells us that seventeen people in Alberta, Canada say that being gluten-free by medical necessity is both easier and more challenging than it was in the past. That it was both more manageable, but also more stressful, because gluten-free fad dieters are confusing everything. What are we to make of this? Talking informally with 17 celiac patients and writing up the results may not rise to the level of a solid study, and their input doesn’t really tell us much about how to improve their situation. Also, blaming the popularity of the gluten-free diet as a cause of confusion or stress in people with celiac disease could be an overreaction. Remember, ten or twenty years ago when most people had nearly zero awareness of celiac disease or the gluten-free diet? That included doctors who were trying to diagnose it. To have these inconvenient misunderstandings, people must first have some idea that celiac disease exists, and that a gluten-free diet is part of it. Is it possible that, as annoying as such misunderstandings may be, they represent progress, however incremental? Perhaps the annoyances are real, perhaps they are perceived. Perhaps they are a reflection of slowly rising awareness levels. But the study doesn’t tell us any of these important details. Again, there’s little question that people with celiac disease need more information up front as they begin to follow a gluten-free diet, but clearly more input and study is needed so that we can come up with an accurate picture of the challenges and provide the best ways to meet them. What’s your experience of the rapidly changing gluten-free landscape? Read more at: JOURNAL OF HUMAN NUTRITION & DIETETICS. First published: 02 October 2018 https://doi.org/10.1111/jhn.12597

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

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