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Celiac.com 12/13/2022 - Being gluten-free presents some challenges for Catholics with celiac disease, especially if they cannot receive the host via the chalice, as was the case during the height of the Covid epidemic. We've done a few articles off gluten-free communion wafers, and on the church rules around them. Communion Bread Must Contain "Some" Wheat Catholics with celiac disease who hope to take communion in the form of gluten-free bread or wafers are likely hoping in vain, because according to church law, all bread that is consecrated at the altar must contain a percentage of wheat. The latest confirmation of this reality comes via Sister Fiachra Nutty, from St Mary’s Abbey, in Waterford, Ireland. Sister Fiachra’s job up until September of 2020 was baking and selling holy bread. The pandemic has "made some of our work redundant, our primary work here is prayer,” she said on RTÉ Radio 1’s Liveline. Before the pandemic, Sister Fiachra was working on Eucharist bread. She said she made five different sizes of bread both in brown and white. But there was never a gluten-free option. "We don’t do gluten-free,” she said. “That is by canon law that the bread that's concentrated at the alter must have a percentage of wheat, so we can't produce gluten-free hosts and be in conformity with canon law." She acknowledged the existence of gluten-free hosts, but noted the law. "Now, there are gluten-free hosts out there and I’m not trying to cause trouble with anybody but under canon law it's not supposed to be concentrated." Celiacs Should Take Communion from the Chalice She advises Catholics with celiac disease to consider that, absent the bread or wafer, they can choose to receive from the chalice. People who "have a problem with gluten...should really be receiving from the chalice. I know we can’t now but pre Covid.” The rule that communion hosts must contain gluten has presented challenges for numerous Catholics looking to receive communion. How much the practice of conferring host and chalice at mass has changed back to its pre-Covid ways remains unclear. Perhaps Catholics with celiac disease who take mass can chime into our comments and let us know the disposition of the host and chalice in your local parish, both pre- and post-covid. Certainly, for Catholics looking to receive communion via the host, this news will likely be unwelcome, and possibly present some challenges to receiving communion. There is also a possibility of ingesting cross-contamination when drinking from a chalice that has been shared with others who have just eaten a gluten-containing host. Are you Catholic? Have you run into this problem in your local parish? Please share your thoughts in the comments below. Read more at independent.ie

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. Nutrition in Clinical Practice 25(5) 471-480. doi: 10.1177/0884533610379606 Althusser, L. (1971). Lenin and philosophy and other essays. New York, NY: Monthly Review Press. Anderson, C. A., Carnagey, N. L., & Eubanks, J. (2003). Exposure to violent media: The effects of songs with violent lyrics on aggressive thoughts and feelings. Journal of Personality and Social Psychology, 84(5), 960-971. 960-971. doi: 10.1037/0022-3514.84.5.960 Baldrige, L. (1990). New etiquette for the 90s. New York, NY: Scribner. BBC. (2018). How many Roman Catholics are there in the world? Retrieved April 1, 2018 from https://www.bbc.com/news/world-21443313 Bernard, O. (2016). Let's put an end to the gluten-free trend. Retrieved from January 18, 2019 from http://www.thepharmafist.com/gluten/ Boyer, P., & Lienard, P. (2006). Why ritualized behavior? Precaution systems and action parsing in developmental, pathological and cultural rituals. Behavioral and Brain Sciences, 29, 595-650. doi: 10.1017/S0140525X6009332 Brante, T. (1993). Reasons for Studying Scientific and Science-Based Controversies. In T. Brante, S. Fuller, & W. Lynch (Eds), Content to Contention. (pp. 177-192). Albany, NY: State U of New York. Charland, M. (1987). Constitutive rhetoric: The case of the peuple Quebecois. Quarterly Journal of Speech, 73, 133-151. doi: 10.1080/00335638709383799 Collins, R., Martino, S., & Elliott, M., (2011). Propensity scoring and the relationship between sexual media and adolescent sexual behavior: Commenting on Steinberg and Monahan. American Psychological Association, 47 (2), 577-579. doi: 10.1037/a0022564 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. Duane, J. E. (2018). The media encourages negative social behavior toward gluten-free dieters. Retrieved November 22, 2018. Fahnestock, J. (1998). Accommodating science: The rhetorical life of scientific facts. Written Communication 15 (3) 330-350. Fasano, A., & Catassi, C. (2012). Celiac disease. The New England Journal of Medicine, 267(25), 2419-2426. doi: 10.1056/NEJMcp1113994 Fasano, A., & Flaherty. S. (2014). Gluten freedom. Hoboken, NJ: Wiley & Sons Inc. Filloon, W. (2016). Anthony Bourdain hates your gluten-free diet. Retrieved August 25, 2018 from https://www.eater.com/2016/6/6/11866220/anthony-bourdain-interview-adweek-gluten Foust, C. R. (2011). Considering the prospects of immediate resistance in food politics: reflections on the garden. Environmental Communication 5(3), 350–355. doi: 10.1080/17524032.2011.593534 French Today (2018). What to expect at a typical French wedding. Retrieved March 23, 2018 from https://www.frenchtoday.com/blog/expect-typical-french-wedding Gellner, E. (1978). Notes towards a theory of ideology. Retrieved from http://www.persee.fr/doc/hom_0439-4216_1978_num_18_3_367880 Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Hall, P. (2005). Who do they think they are? Counseling & Psychotherapy Journal, 16 (1), 40-41. No doi. Healthline. (2020). Is Gluten Bad for you? Retrieved February 8, 2020 from https://www.healthline.com/nutrition/is-gluten-bad Hilton, C. (2016). Unveiling self-harm behavior: What can social media site Twitter tell us about self-harm? A qualitative exploration. Journal of Clinical Nursing, 26, 1690-1704. doi: 10.1111/jocn.13575 History of Apple Stack Cake. (2018) History of the apple stack cake. Retrieved March 22, 2018 from http://therevivalist.info/history-of-apple-stack-cake/ Huesman, L., R., & Miller, L. S. (1994). Media violence in childhood. Aggressive behavior: Current perspectives, Edited by L. Rowell Huesman. Plenum Press, New York. Huesmann, L. R., & Taylor, L. D. (2006). The role of media violence in violent behavior. Annual Review of Public Health 27, 393-415. No doi. Hyman, M. (2013). Gluten and chronic diseases: the connection. Retrieved from: http://thejourneytogoodhealth.blogspot.com/2013/08/gluten-and-chronic-diseases-connection.html Hyman, M. (2013). Gluten and chronic diseases: the connection. Retrieved from: http://thejourneytogoodhealth.blogspot.com/2013/08/gluten-and-chronic-diseases-connection.html Jones, C. (2013). For them, not us: How ableist interpretations of the International Symbol of Access make disability. Critical Disability Discourse/Diseours Critiques dans le Champ du Handicap, 5, 67-93. No doi. Kinsella, B. (1997). The Oprah effect. Publishers Weekly, 244(3), 276-278. No doi. LeBesco, K., & Naccarato, P. (2008). Edible ideologies: Representing food & meaning. Albany, NY: State University of New York Press. Lee, E., & Kim. M. (2004). Exposure to media violence and bullying at school: Mediating influences of anger and contact with delinquent friends. Psychological Reports, 95(6), 659-672. doi: 10.2466/PRO.95.6 Levenstein, H. (2012). Fear of food and why we worry about what we eat. Chicago IL: University of Chicago Press. Levinovitz, A. (2015). The gluten lie: And other myths about what you eat. New York, NY: Simon & Schuster Digital Sales, Inc. Mills, C. W. (1962). The Marxists. New York, NY: Dell Publishing Co., Inc. Montanari, M. (2006). Food is culture. New York, NY: Columbia University Press. Moore, L. R. (2013). How non-celiacs changed gluten free: Reshaping contested illness experience in the gluten-free diet boom (Doctoral dissertation). Retrieved from ProQuest, LLC (10290861) Myth. (2015). The myth of big bad gluten. Retrieved from https://www.nytimes.com/2015/07/05/opinion/sunday/the-myth-of-big-bad-gluten.html NBC News. (2016). More people go gluten-free than need to, study finds. Retrieved November 18, 2018 from https://www.nbcnews.com/health/health-news/more-people-going-gluten-free-need-study-finds-n643931 Nownes, A. J. (2012). An experimental investigation of the effects of celebrity support for political parties in the United States. American Politics Research, 40(2), 476-500. doi: 10.1177/1532673Xll429371 Rohan, M. J. (2000). A rose by any name? The values construct? Personality and Social Psychology Review, 4(2), 255-277. doi: 10.1207/S15327957PSPR0403_4 Shanahan, C. (2017). Deep nutrition. New York, NY: Flatiron Books. South Park (2014). Gluten free ebola. Episode 2, Season 18, Directed by Trey Parker. Written by Trey Parker. Production code 1802. Taubes, G. (2016). The case against sugar. New York, NY: Knopf. The Spruce. (2018). Seven wedding cake traditions and their meanings. Retrieved March 5, 2018 from https://www.thespruce.com/wedding-cake-traditions-486933 Therborn, G. (1980). The ideology of power and the power of ideology. London, England: Verso. Titchkosky, T. (2008). To pee or not to pee? Ordinary talk about extraordinary exclusions in a university environment. Canadian Journal of Sociology, 33(1), 37-60. No doi. U.S. Census. (2019). American population clock. Retrieved March 16, 2019 from https://www.census.gov/popclock/ U.S. News. (2018). Health issues that are sometimes mistaken for gluten sensitivity. Retrieved November 15, 2018 from https://health.usnews.com/wellness/food/slideshows/health-issues-that-are-sometimes-mistaken-for-gluten-sensitivity USDA. (2015). USDA Guidelines for Americans 2015-2020, (8th Ed.). Retrieved October 1, 2018 from DietaryGuidelines.gov USDA. (2015). USDA Guidelines for Americans 2015-2020, (8th Ed.). Retrieved October 1, 2018 from DietaryGuidelines.gov 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 Vetter, M. L., Herring, S.J., Sood, M., Shah, N, R., & Kalet, A. L. (2008). What do resident physicians know about nutrition? An evaluation of attitudes, self-perceived proficiency and knowledge. Journal of the American College of Nutrition, 27(2), 287-298. doi: 10.1080/07315724.2008.10719702 Villanti, A., Boulay, M., & Juon, H. (2010). Peer, parent and media influences on adolescent smoking by developmental stage. Addictive Behaviors, 36, 133-136. doi: 10.1016/j.addbeh.2010.08.018 Wedding. (2018). Wedding: Did you know that bread is part of a wedding tradition? Retrieved from http://www.weddingandpartynetwork.com/blog/wedding-traditions/bread-wedding-tradition/ Yudkin, J. & Lustig, J. (Original 1972, updated by Yudkin in 1986 and reprinted 2013) Pure, white and deadly London, UK: Penguin Books. Zhou, S., Shapiro, M., Wansink, B., (2016), The audience eats more if a movie character keeps eating: An unconscious mechanism for media influence on eating behaviors. Appetite, 108, 407-415. doi: http://dx.doi.org/10.1016/j-appet.2016.10.0280195-6663

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). The body in health and illness. Qualitative Health Research, 13, 256-267. doi: 10.1177/10497323002239603 Davis, N. A. (2005). Invisible disability. Ethics, 116, 153-213. doi: 10.1086/453151 Fasano, A., & Flaherty. S. (2014). Gluten freedom. Hoboken, NJ: Wiley & Sons 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 Forbes, (2018). Mapping the U.S. farm subsidy one million club. Retrieved 12/10/18 from https://www.forbes.com/sites/adamandrzejewski/2018/08/14/mapping-the-u-s-farm-subsidy-1-million-club/#5324bff93efc Franck, C., Grandi., S., & Eisenberg, M. (2013). Agricultural subsidies and the American obesity epidemic. American Journal of Preventive Medicine 45(3), 327-333. doi: 10.1016/jamepre.2013.04.010 Gallup. (2014). The "40-hour" workweek is actually longer – by seven hours. Retrieved from: https://news.gallup.com/poll/175286/hour-workweek-actually-longer-seven-hours.aspx Goldberg, L. R., 1968, Simple Models or Simple Processes Some Research on Clinical Judgments, American Psychologist, 23, 7, pp 483-96 Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Kumari Campbell, F., & Kumari Campbell, F. (2009). Contours of Ablelism: The production of disability and abledness. New York, NY: Palgrave Macmillian Ltd. McCabe, M. A., Toughill, E. H., Parkhill, A. M., Bosett, M. S., Jevic, M. S., and Nye, M. L., Celiac disease: a medical puzzle. The American Journal of Nursing, 112(10), 33-46. No doi. Mercola. (2012). $29 Billion reasons to lie about cholesterol. Retrieved from http://articles.mercola.com/sites/articles/archive/2012/02/01/29-billion-reasons-to-lie-about-cholesterol.aspx Norling, S. (2014). Your doctor is wrong: For anyone who has been dismissed, misdiagnosed or mistreated. 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 11/26/2014 - Catholics with celiac disease received some hopeful news recently, when the U.S. Conference of Catholic Bishops voted overwhelmingly in favor of drafting of a revision to the Guidelines for the Celebration of the Sacraments with Persons with Disabilities. The vote was 207 bishops in favor and one against, with one abstention. The bishops voted to change the guideline to accommodate people with celiac disease and others who cannot consume wheat, and have been unable to take full communion. Because churches are required to serve communion wafers that contain wheat, numerous people have been unable to consume the wafers, and have thereby been missing out on what many deem to be a crucial part of communion. Some Catholic churches have tried to accommodate people with celiac disease and gluten sensitivities by offering low-gluten communion wafers. However, even the low-gluten versions approved by the church generally did not meet the FDA standards requiring less than 20 parts per million of gluten, and were thus unacceptable to many with celiac disease or severe gluten sensitivity. For these people, even small amounts of the wheat gluten can cause health problems. Exactly what changes the bishops will make regarding the Eucharistic wafer remain to be seen. Ideally, the new guidelines will permit wafers that are safe for people with celiac disease, and which will permit them to enjoy full communion. How do you feel about this? Is it welcome news? Do you know any catholics who’ve been missing out on communion? Stay tuned for more news on the new guidelines. Here, you’ll find a copy of the November 2014 USCCB General Assembly Agenda Item Vote Results.