Gluten-Centric Culture: Chapter 8 - Empowering Language

Celiac.com 01/12/2023 - This is a continuation of the book Gluten-Centric Culture that is being published each quarter on celiac.com. For your convenience, links to previous chapters can be found on alternativecook.com. When you try broaching a discussion about gluten-centric “truths” with your loved ones you may discover it’s not something they care to discuss. Our relationships with partners and family members are complicated with layers of memories and levels of deep-seated feelings. Few of us navigate our familial relationships with skilled communication, and many of us lack tools to even have constructive conversations. Having language emboldens us when we face the gluten-centric cultural constraints discussed in this book. It helps us to understand what is going on, to broach the conversation, and to point out “truths” that no longer work. Rather than being baffled or shut down by social encounters, try having the conversation, particularly with the ones you love—because they are worth it. Books provide ideas and tools with no guarantees on the outcome. It takes determination to cultivate relationships and to negotiate agreements.

In previous chapters, we talked about the cycle of change from diagnosis to transformation. As you enter into the Big Shift (Chapter 6), working toward transformation in Chapter 7, you’ll become more confident with how to navigate situations. You’ll understand that these challenges in various “vexing venues” (Chapter 3) are part of the process. As life events perplex you, you’ll go in and out of the limbo stage testing and re-testing new “truths” (Chapter 6). You’ll even be able to say to yourself, “Oh, this situation triggered me to go into limbo. Now I need to come up with a new resolution.” After every situation, we get better at handling it. Once we enter into a new state of homeostasis, often we also transform our identity. This is the stage when our new “truths” are locked in and we “live it” (Chapter 7). We aren’t asking for acceptance, we aren’t defensive about our dietary choices, and we command respect. The benefit of a book like this one is that you’ll now be aware as you go through these phases, and it will give you more confidence. So will having new language and a new catch phrase.

A New Catch Phrase

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Feelings of being left out or isolated because of a special need that prevents a person from being part of the mainstream are partially due to the fact we have no language to describe this phenomenon. Similar to how Tarana Burke (Burke, 2006) coined the hashtag #metoo to signify sexual harassment, and started a movement of no tolerance, we need a catchphrase to “call out” gluten-centric practices. These phrases sometimes evolve organically via social media; other times, it’s the consequence of a few passionate people finding words to name a common struggle. Many words or phrases of this nature have entered mainstream language such as: catch-22 coined by Heller (1961) meaning a no-win dilemma, groupthink coined by Janis (1982) meaning blind conformity, litterbug coined by McKeon referring to those who litter (McKeon, 1979), and meme coined by Dawkins (1976) referring to encapsulated concepts conveyed in social media. Other popular hashtags include: #sandiegoonfire to bring attention to a local fire; or others to share feelings and beliefs such as #love, #picoftheday, and #followme.

My nation-wide study reveals that Western culture and language is gluten-centric, causing many who avoid bread to be suspect. I’ve pointed out how gluten-containing foods are part of our lexicon – “our daily bread,” “as great as sliced bread,” “breaking bread together,” etc. My work also points to the fact that media infractions perpetuate this belief (Chapter 1, Chapter 2). Awareness and language to describe the situation may enable conversations by those “othered” in order to experience more compassion and understanding from family and friends, possibly leading to altering gluten centric-related rituals (Chapter 5). Once developed, the catch-phrase would need to be published and promoted in popular media in order to become part of the normal lexicon used to describe when someone feels the effect of being on the outside of cultural norms. Let’s call out these situations with #glutencentric. When someone is engaging in attitudes we’ve previously discussed such as I-know-best, or expressing gluten doubt – we can respond by saying, “You probably don’t mean to, but you are being #glutencentric.” That will point out ways our culture is built on gluten-centric traditions, and hopefully will encourage more awareness and compassion.

We can use #glutencentric to explain our behavior in tricky situations. The current vernacular when someone with celiac disease is poisoned with gluten is, “I got ‘glutened.” The hashtag #glutencentric derives from that – illustrating our need to take precautions to dodge cultural norms that sabotage our health. When we visit someone where we’ll be cooking in their gluten-containing kitchen, #glutencentric would explain our need to wipe down surfaces and cook in a separate place using safe utensils. #Glutencentric would encapsulate in one word why we don’t go into bakeries, kitchens, or pizzerias where gluten filled flour dust is in the air, and don’t eat foods at potlucks. Let’s say it catches on, and a friend asks you to come over and cut out Christmas cookies, you can say, “That’s #glutencentric, let’s make divinity instead!” In one word, you’ve encapsulated the lifestyle, it’s non-negotiable because it comes with a set of meanings, and you’ve suggested a naturally gluten free alternative (that still fits the holiday genre).

Having a word to encapsulate this situation would entitle us to be included, but not expected to eat. For example, Liza reports, “My friend told me she had a dinner party of all of her friends and didn’t invite me because she didn’t know what I would eat. I told her, ‘Invite me. If you don’t, I feel left out, and we are letting the disease win. I want to be included in social engagements, so please invite me and I will bring my own bowl of food.’” Her friend said she wished she had thought of that beforehand. If Liza and her friend agreed on the concept of #glutencentric, it would have been socially acceptable for Liza to be invited to a dinner party and to bring her own bowl. Liza went on to say she felt she needed to “train” her friends on how to keep her safe, but engaged. This way, everybody wins.

Having a catch-phrase to summarize the cultural constraints is empowering. When confronted with a snarky family member trying to push “a little” on you, you say, “That’s #glutencentric!” It will, in time, come to mean that there isn’t any more argument or debate about your resolve, so stop pushing… In time, it will be a way for us to command rights.

New Language

Throughout this book, we’ve learned new language to describe cultural constraints that collide with having food sensitivities or celiac disease. With this new language, we are able to understand why we feel removed from the mainstream, and now can take steps to redefine “truths” and enlighten loved ones. Let’s summarize the new language revealed in this book.

To recap, the cultural constraints identified are: reluctant tolerance, gluten-doubt, able-body bias, “sorta” scientific, I-know-best, diet discretion, exclusionary etiquette, absence of agency, sacred bread, size surveillance, by the numbers, and yours, not mine. These cultural constraints “play out” in “vexing venues” such as at work, home, church, the medical arena, school, the bedroom, restaurants, (Chapter 3) around the extended family dinner table (Chapter 5), while travelling, and even in our own bodies as we struggle with the strife of illness (Chapter 4).

Summary of Cultural Constraints in Book

Cultural Constraints in Action

Reluctant tolerance – This occurs when someone says they understand the gluten free lifestyle, but their actions (and even words) indicate they are just putting up with our needs, but they really aren’t on board. People only cooperate when it is convenient for them. An example comes from Layla (#65), who described how she stayed in her mother-in-law’s house after telling her how sensitive to gluten she was. The mother-in-law acted like she would cooperate, but when Layla went into the kitchen the next day, the mother-in-law was baking cookies, and flour dust was all over the kitchen. It forced Layla to move her food to the bedroom. She limited her time in the kitchen. The mother-in-law appeared to be cooperative, but reluctant tolerance reared its ugly head when the mother-in-law decided she wanted to bake cookies, come what may to Layla’s health. Reluctant tolerance and gluten doubt often go hand-in-hand.

Gluten doubt – Occurs when someone doubts our need to avoid even the tiniest molecule of gluten. Some even go to the extreme to find research to refute your claims that gluten in any quantity can be deleterious to your health. For example, when my mother said, “Oh it can’t be that bad, you must be exaggerating,” she cast doubt on my announcement that I had celiac disease and couldn’t eat gluten. Granted, my mother was on in years by the time I was diagnosed, and the thought of such a drastic dietary change was hard for her to comprehend. Also, her comment might have been to mitigate my edict to stop gluten all-together. Mom’s always want to make things a little better, don’t they? Because she was my mother, and I am conditioned to listening to her and learning from her, I doubted my resolve. She holds a lot of power over me and my decisions. She taught me what to eat from the start. If she doubted my gluten restrictions, I had to consider it. Was I over-reacting?

Another example of gluten-doubt comes from Grace’s (#17) husband’s reaction (Chapter 2). Recall that he searched the Internet trying to find evidence that people with celiac disease can eat some gluten. Or Stillman (2016) who solicited her husband to ask his gastroenterologist friends to find research that gluten consumption was acceptable for her daughter with celiac disease. Denial is one of the steps to ultimate acceptance (Chapter 3, Chapter 6). Gluten-doubt is perpetuated in the media with “gluten” being the butt of jokes, causing those who hear them to question the severity of celiac disease and the need for a gluten free diet (Chapter 2).

Gluten-doubt occurs when someone doubts the need for a gluten free diet. Many people I interviewed reported their spouse or family members felt they were “too restrictive,” indicating the gluten-doubt attitude. For example, Dustin (#46) said, “My wife thinks I’m too strict and paranoid.” Yet, he had just described to me how sick he was, how it took years to be diagnosed, how doctors disagreed about how to interpret the antibody blood test in order to finally diagnose him, and how he learned by trial and error just how restrictive he had to be in order to regain health. It’s hard not to wonder how his wife missed the struggles he endured. She eats gluten regularly and goes out, leaving him behind, enhancing his feelings of isolation and alienation with the disease. As his partner, her gluten-doubt makes it extremely hard for him to live harmoniously because of her lack of compassion. It would be nice of her to try to “walk in his shoes,” a little.

Able-body bias assumes everybody can consume everything. Able-body bias occurs when accommodations are not contemplated for those with special needs, such as when gluten is added to foods that wouldn’t normally contain it or when restaurants do not have anything on the menu suitable for those with celiac disease. The able-body bias is dangerous because it plays out in all of the venues and can cause inadvertent cross-contamination. Some people I interviewed shared surprising things that contain gluten. For example, margaritas can contain gluten when bars add beer to their recipe. Another participant told me that some glue on tea bags can contain gluten, as can glue in packaging and to stick envelopes. Whole baked chickens can contain both gluten and dairy as do some deli meats. Packaged “fake crab” can contain gluten, as can the caramel color from soda pop—which caused two participants to react. Reusable straws can be made of gluten-containing pasta. BBQ pork can contain barley malt, used to make the meat appear glossy. Roux to thicken soup is often made with flour. Brown rice syrup and bouillon can contain gluten. Hash browns can also contain gluten because flour is sometimes used as a binder to hold them together. I have taken the same brand of probiotic/prebiotic for years. I recently bought more, and though the labeling changed, I didn’t think to look at it. Then I started having “glutened” symptoms. The product now contains maltodextrin. That’s a controversial ingredient – some do and some don’t react to it. Apparently, I do. When I quit taking it, the symptoms went away. Agar is high in iodine, as is seaweed such as the nori used to wrap sushi. Those with dermatitis herpetiformus need to know that iodine can trigger a reaction. Here’s one that really surprised me: scrambled eggs. In some restaurants, they add pancake batter to the scrambled eggs to make them fluffier. These are all examples of able-body bias – hidden poisons to some, assumed to be safe for all.

Pharmaceuticals are another place where there can be hidden gluten in the drug binders. Some of the ingredient lists on over-the-counter and prescription drugs list “starch” as a binder. These binders vary from lot to lot depending on what is available or least expensive. There are websites that list drugs that are “safe,” but the best way to be sure is to do an Elisa test on any new prescription. This is costly – the tests are expensive – and medicine is wasted conducting the test. This is another example of able-bodied bias because the pharmaceutical companies do not disclose whether a drug contains gluten.

Cross-contamination can happen anywhere. For example, when going to the ice cream shop, if one ice cream contains gluten, they may all be contaminated, unless the store has special practices to clean scoops in between dips. Some respondents reported that ice cream contains wheat-based thickeners not disclosed on the label. Frying oils in restaurants can also be a source for cross-contamination. If cooks fry gluten-containing foods in the same oil they use for French fries, the fries are contaminated. And in the deli, the meat slicer must be cleaned between slices to prevent cross-contamination. Safe practices have to be followed to ensure our safety. I witnessed a chef splashing water from the back burner pasta pot on the front burner grilled fish. This is an example of how easily foods are cross-contaminated. It’s imperative to observe as much as possible when you go to a restaurant. For example, I observed a server “stir in” a drop of sour cream that spilled into the guacamole at a popular chain. This little bit of dairy could poison someone with a dairy allergy. These examples illustrate able-body bias as well as how cooks in a kitchen do what they need to in order to “turn tables” quickly. A restaurant kitchen is a melee of activity, and special requests slow the line.

The unfortunate reality is that we just can’t be too careful! To mitigate risk, some participants shared their strategies for staying safe, such as bringing their own food to group gatherings or keeping emergency foods with them at all times. At a potluck, if they planned to eat the food, some participants ensured they were first in line, so serving spoons weren’t cross contaminated. When going out for a “beer” with friends, many participants recommend ordering hard cider because it tastes good and looks like beer. There are several good gluten-free beers available on the market. And best of all – Oreos have a gluten-free version! Many participants recommended them. Doughnuts were the food that came up as the most missed food. There are some packaged versions, and several lucky people mentioned bakeries in their towns that carried fresh gluten-free doughnuts.

“Sorta” Scientific refers to the propensity to spout off “scientific” data without telling the whole story, often misleading the listener to come to an erroneous conclusion. It also refers to scientific controversies that confuse those trying to follow a gluten free diet. These sound bytes cause us to draw conclusions from fragmented information, such as in a clickbait headline. Let’s consider the oat controversy that has become a hot topic in celiac circles. Are oats GF? It depends on who you talk to. I met a gluten free oat farmer at a convention who told me his oats are raised miles from fields of gluten-containing grains to prevent intermixing with the oats. It is not an exact science, he explained, because he cannot control the wind that blows seeds from other fields. Furthermore, his oats are processed in a gluten free plant. Oats are touted as a health-providing food because they lower glucose and cholesterol levels (Smulders, et al., 2018). And one study confirms that those with celiac disease can eat about a cup of oats a day without a problem (Hardy, Tye-Din, & Stewart, 2015). Many who are diagnosed with celiac disease say they can eat oats, while others suffer with celiac-type symptoms when they consume them. Perhaps it is because the oats they are eating are cross-contaminated, because the manufacturer didn’t grow them in fields far from gluten containing grains, or because they were processed in a facility that also processes gluten. We shouldn’t have to ask these questions. Theoretically, if the oats meet the government guidelines of under 20 ppm criteria, they should be safe for us to eat.

I really wanted to incorporate oats into my diet. I missed eating my favorite oatmeal chocolate-covered raison cookies. I bought the bag of oats from the GF oat-farmer, rationalizing the $12 price tag because of the extremes he took to ensure the oats were safe. To do a real test, I quit eating all grains, including gluten free grains for three months as a “cleanse” so that I could re-introduce those lovely gluten free oats. This wasn’t easy! Grains give a certain “fullness” that is lacking when omitted from the diet. In time, I got used to the new “fullness” that comes from eating other foods. Finally, three months later, I made my favorite oatmeal cookies. I took only one bite (and didn’t even eat any of the dough as I made them!). Since my disease takes ten days to fully manifest, I waited. Ten days later, I broke out in that old familiar dermatitis herpetiformus rash, and it was not a small outbreak! Clearly, I cannot eat gluten-free oats. I don’t know whether I reacted to gluten in the oats, or to something called avenins, but I do know that the sorta scientific data wasn’t true for me! Since my oat experiment, I learned that some people may have an intolerance to oat avenins (Arentz-Hansen, et al., 2004); while another contradictory study with only two participants concluded that oat avenins did not cause reactions in those with celiac disease (Hardman, Tatham, Thomas, 1999). Which should I believe? A 2015 study with 73 participants with celiac disease found that six people reacted to the avenins in oats (Hardy, Tye-Din, & Stewart, 2015). Whether to consume oats is controversial and sorta scientific because of the conflicting results. Rather than going to the doctor for more tests, I decided to continue eliminating all grains from my diet. I felt better than ever during that three-month cleanse, when I didn’t consume any grains. Contradictory studies show how the sorta scientific assertions can really cause confusion.

I-Know-Best is the attitude conveyed by others that you really don’t know what you are talking about when you say you need to follow a gluten free diet, but rather I-know-what’s best for you. We experience this in every venue, as shown throughout the book. The most alarming place I saw this was in a rehabilitation facility where my mother went after having her knee repaired. Though my mother was never gluten free, I asked them (on my own behalf for future reference) if they would honor a gluten free diet request and learned they wouldn’t without a “dietary prescription” from a medical doctor. They explained that the gluten free diet was very difficult for them to adhere to, and without specific doctor’s orders, they wouldn’t comply. Furthermore, a staff member at the facility informed me that most people following the gluten free diet were just doing it because it was the fad. Wow! How safe do you think you’d be with her preparing your foods? That’s I-know-best folks!

Diet Discretion refers to the culturally-driven propensity to scrutinize each other’s diet as discussed in Chapter 4. It can also refer to the challenge faced by others who strive to cook for us, trying to adhere to our dietary needs. This notion is perpetuated by some companies who advertise “ideals” and has infiltrated society as an acceptable practice and leads to size surveillance (discussed below). In the friends and family dinner table environment, Claire (#25) shares how she deals with the diet discretion demeanor. She says, “It is such a dilemma – either to resolve to only eat your own food, or to eat what others kindheartedly prepare for you, and risk that they do not know all of the hidden words in ingredients that mean gluten.” Elaborating, she says:

It depends on the situation. I don’t want to be mean to somebody who is really trying. It is a lot better for me to thank them and appreciate them. Do you want to shoot them down so they never do it again? That's the question you have to ask yourself. I have never said, ‘Oh my gosh. I can't eat that. I might be contaminated.’ I have taken food and not eaten it, but you can do that quietly and subtly. You don't have to have a fit, and throw it in people's face. You can be subtle. You can thank them for the food and not eat it.

On one hand we want to be polite, and on the other hand, we don’t want to be sickened. I once gave a friend a beautiful dried fig that I specifically chose for her as a treat. It was from a specialty store. She thanked me and out of the corner of my eye, I noticed she put it into her purse. Apparently, she doesn’t like figs, but she didn’t tell me that. She was very polite and accepted it with gratitude. I admit I’ve done the same. But, other times, I felt like I was lying when I pretended to eat foods I wouldn’t dare put into my mouth. It really feels disingenuous, and, frankly, it encourages behavior I don’t want to perpetuate. That’s why I announce to the people I regularly get together with that I will bring my own food. One group collectively breathed a sigh of relief, because their dietary discretion demeanor of trying to provide “clean” foods for me caused them stress.

It is really nice to have someone else make something I feel safe eating. One of my friends bakes sweet potatoes, knowing they are one of my favorite foods. She carefully wraps them in aluminum foil so the oven doesn’t cross-contaminate them. I eat them and feel so grateful that someone has prepared something safe for me. I appreciate it when my sister uses a special pan to prepare foods for me, so I don’t become cross-contaminated by their regular fare. It makes me feel more included in the family when I eat the same foods as they eat. But when I go to a friend’s home who really isn’t particularly informed or interested (or perhaps is relieved they don’t have to worry about my needs), I either bring a dish to share and serve myself first, or I bring my own bowl. It is just safer that way. But these resolves go by the wayside when something like what Claire describes:

I can tell you something nice that somebody did. My friend, a good friend of mine, one of her kids got married and I was not going to say a word, her hands were so full, and she was cooking all the food and everything for her kid’s wedding. My intention was just to bring food, tuck it in the fridge in the back, and warm it up and eat it later when I had time. Several days before, she said something about a platter and I didn't understand what she was talking about. Then she asked me to cover the platter and put it in the back so it would not get cross contaminated. I said, ‘Are you seriously cooking gluten-free too?’ And she said, "Well of course, you're helping, why wouldn't I?’ She went way out of her way to do that, she was cooking for 200 people, and she still thought of me. So that was pretty cool.

Claire reports she ate the food her friend prepared, with no reaction. She felt lucky and grateful. These examples illustrate the different aspects of dietary discretion, which can have negative connotations when someone is scrutinizing what is on our plate, or positive implications when others are trying to adapt to our dietary requirements. The propensity to scrutinize each other’s diet is rooted in our need to nurture. Offering food is a way to show love and to ensure that those around us are satiated. Clearly, we want to encourage that behavior from our friends and family, and how we deal with dietary discretion is determined on a case-by-case basis.

Exclusionary Etiquette refers to rules of etiquette that contradict what is safe for those with celiac disease, food sensitivities, or non-celiac gluten sensitivities. How do we deal with it when presented with gluten-containing food? I hosted a book club potluck at my home. A friend brought homemade banana bread with gluten, even though I sent a note out to everyone reminding them my home is gluten free, accompanied with a list of acceptable foods. It was awkward, because etiquette dictates that we accept foods that people bring to our home with gratitude. I really like this person and don’t want to ever offend her. But since I had sent out the note and felt that this specific group of friends had a lot of insider information about the tribulations of my gluten free life, I said, “Oh, you can’t bring that into my home. I’m sorry.” And she said, “I’ll keep it out of your kitchen and just serve it on the coffee table.” Well, I can be poisoned just as easily from cross-contamination on the coffee table as in the kitchen. I had to ask her to take it back to her car. What a dilemma! I was having memories of the cleaning lady episode mentioned in Chapter 1. I didn’t know how to handle it. I thought about Liza (#68) in Chapter 5 who gave the gluten-containing gift back to her neighbor and then regretted doing that. What is the right answer? I’m not sure where the line is, but if it can contaminate you, you have to speak up. But if it is a gift that you can easily discard after the person leaves, it might be best, (even though it isn’t honest) to say “thank you” and tell the giver how much you appreciate the thought. After all, it isn’t it the thought that counts? Collectively, we have to change the rules of etiquette, so when we don’t accept food we suspect may sicken us, we can reject it without feeling like we are breaking social norms, or for fear we won’t ever be included in food-related gatherings.

Absence of Agency describes situations where a person has no power in a relationship, causing them to be highly influenced by another. It manifests as the inability to act on one’s own free will or feeling the need to ask that particular person for permission to do something. For example, Ava (#7, Chapter 5) described how her mother likely had celiac disease, but continued to cook it and eat it because her father refused to eat a gluten free diet. Ava describes how her mother suffers from symptoms of celiac disease as a result. This illustrates an absence of agency on the mother’s part. If she had agency in the relationship, she would assert her needs and demand that her health concerns were prioritized. It takes courage because often we are confronting someone who intimidates or has power over us.

Sacred Bread describes the cultural constraint that bread is a sacred food present at meals and ritual ceremonies. The most obvious application of this cultural constraint is with the communion host at church. This causes issues when going to church and not being able to participate in sacred sacraments. Another is the notion that a meal is not complete without bread on the dinner table (de Certeau, et al, 1998). Diets that omit bread are anathema to some, illustrating the cultural sanctification of bread.

Size Surveillance – This is the propensity to judge our own and each other’s size as illustrated in Chapter 4 with our “diet” culture. It is perpetuated by companies who advertise “ideals” and has infiltrated society as an acceptable practice. I have a friend who always tells me, “I hate it that I’m so fat.” While I want to engage her to ask how she feels about it, what her plan is to fix it, and to encourage her, I don’t because she isn’t telling me to find a solution. She’s venting. But her comment causes me to discretely look at her body – something I wouldn’t normally do. I am compelled to assess for myself if she is really “fat.” This illustrates size surveillance. Her size at any given time shouldn’t be relevant to our conversation, but in fact, it is a regular topic. This seems to be true with groups of friends too.

I have another friend who regularly east and drinks with her girlfriends to celebrate life’s occasions. Collectively, they also gain or lose weight throughout the year. When they are dieting, they bring lower-fat foods to consume at their gatherings, and when they are not, they enjoy higher-fat foods. Their body sizes go up and down throughout the year, and they regularly comment on it to each other. One said to me, “We’ve gained weight, so now we are on a diet.” Making dieting a team-sport illustrates size surveillance. They are all around the same age, and have individually been on and off of diets since their teens. As friends, this group is aware of each other’s body sizes. They know what size of clothing each other wears when “up” or “down.” They encourage each other while dieting, exercise together, and collectively celebrate successes. What happens when one member of the group stays thin when the others are on the thicker side, or vice versa? Would they be ousted from the group? Is being a uniform size a “condition of acceptance” in that group? Size surveillance and dieting is a major component of their ongoing discussions.

Sexist Scrutiny – This illustrates the propensity of some doctors to treat women different from men. Details of this phenomenon are offered in Maya Dusenbery’s (2017) book entitled Doing Harm. In it, she points out that prescription doses are based on an average size white male and that women were often exempted from studies while in their child bearing years because of fears that hormonal changes would affect test results. Rather, tests were conducted on men and extrapolated for women. She reports that seventy percent women take a prescription while pregnant, and since these drugs were not tested on women, outcomes may be unpredictable (p. 39). She says, “often, women’s symptoms are brushed off as the result of depression, anxiety, or the all-purpose favorite: stress” (p. 3) when in fact they had West Nile virus, pericarditis, and a host of other illnesses that took several attempts before getting a viable diagnosis.

Respondents echoed how it took multiple visits (and several misdiagnoses) to finally get the celiac disease prognosis. In addition to having to visit several times for a diagnosis, Dusenbery found that women wait longer in the emergency room with the same complaints as men. For example, women with stomach cramps waited sixty-five minutes compared to forty-nine minutes for men, to see a doctor. The same is true with women displaying heart related symptoms. She attributes this to sexual biases. Women in my interviews echoed similar sentiments about how they were treated in the examination room, and as they went through the diagnostic process. For example, Ruth, (#69) describes how one day she went to a gastroenterologist she had been seeing regularly for several years, without an appointment. She was actively suffering with a rash, stomach distress, constipation, and joint pain and when she called to try to get an appointment, the receptionist told her she’d have to wait two months. At her wit’s end with the symptoms – needing prescriptions to ease the agony, she decided to drive over and sit in the waiting room, hoping for an opening. She begged the receptionist to let her see the doctor. Eventually the doctor indignantly huffed into the waiting room and refused to see her. His comment implied that she was stalking him! He told her to make an appointment. She left humiliated, remaining desperate for medical attention. We need to be aware of sexist scrutiny if we are told we are symptomatic because of stress, anxiety, or hormones, so we can ask for other tests that may lead to a proper diagnosis, or find another doctor.

By The Numbers – refers to excessiveness in setting physical goals for weight, food consumption, and even results on medical tests. This entails practices such as weighing food into approved portion sizes, or weighing oneself often, or setting “goals” to achieve desired numbers on medical tests. Someone who knows the number of calories they have consumed at any point in any days is enacting the by-the-numbers practice. Or if they weigh themselves every morning and record the number, and then “punish” themselves for being out of range, they are enacting the by-the-numbers practice. I once observed someone who was following a popular diet plan. I opened a bag of corn chips for us to enjoy before dinner. She asked me if I had a food scale. With it, she carefully measured out the number of grams that corresponded with one serving size of chips according to the nutritional facts printed on the bag. This is a by the numbers practice. When she finished the apportioned amount of chips (a surprisingly small amount), she then ate from the communal bowl. Together, we finished the bag! (What the bag deemed as 16 servings was two for us.)

With regard to medical tests, Andreassen et al. (2015) reports that abnormal low-density lipoprotein (LDL) levels are common for those diagnosed with celiac disease. Many I interviewed were well aware of their “cholesterol” numbers. It’s no surprise. Commercials on TV inform us that we need to be aware of these numbers. Low density lipoproteins are part of the complete blood count routinely tested for heart disease. One can become obsessed trying to tweak out dietary fare or prescription doses to lower these numbers. Some patients are put on a quarterly trial, getting tested, and repeating until desired results are attained. This can cause a laser focus on the numerical outcome, rather than contemplating other lifestyle factors that could also affect the numbers. For those with celiac disease, many people I interviewed were very aware of their anti-giladin antibody levels. Anti-giladin antibodies are tested as part of the celiac disease diagnostic process (John Hopkins, 2020). Some reported that it took years to get their anti-giladin levels back to normal even though they strictly followed a gluten free diet. Knowing that it can take years to get back to normal is very important so that the patient and doctor have realistic expectations. It is also a great way to determine if you are inadvertently infracting. For example, after finally getting into the normal range, I requested the test again because I started having rash outbreaks and couldn’t figure out why. The anti-giladin number I worked so hard to get down had gone up! My doctor explained that it meant I had been infracting for a while. That’s when I discovered there was wheat protein in my hairspray.

Respondents report disparity of interpretation by doctors when abnormal antibodies are detected. Some diagnosed that when only one antibody was in the abnormal range, it was “inconclusive,” while others were told that any abnormality indicated they had celiac disease. The diagnosis process varied greatly among participants. My doctor tells me we are limited by available tests and that the best “diagnosis” was if the symptoms went away with the elimination of it. The by the numbers practice is activated when we assess ourselves to the point of obsession using quantifiable standards.

Yours, Not Mine – refers to the tendency for some family members to shun being tested for celiac disease. It is a “genetic” cultural constraint because it only applies to situations where family members may display symptoms but either refuse to believe a positive test, or refuse testing at all. Examples from Chapter 5 from participants include Emery (#45) who observed symptoms in her family and when she suggested they get tested, they accused her of “trying to get attention.” Or another example Naomi’s (#32) sister, waving the gluten containing food in her face saying, “It sucks to be you.” Both of these examples illustrate the yours, not mine stance, which will be discussed at length in Chapter 10.

It All Makes Sense Now

We’ve talked about ideologies, defining them as “taken-for-granted truths.” Throughout this book, we’ve identified the cultural constraints that keep coming up as we navigate social situations in various “vexing venues.” Awareness of these universal “givens” is the first step to change. Consider other social situations that were changed with awareness. From my study, I learned that people who find themselves on the outside of certain “taken-for-granted truths” experience conflict in various venues. We see a population that endures ridicule in the media, and exclusion such from meals and religious rituals, because ridicule (Freud, 1905/2009) and isolation (Smith, 2009) are two consequences when an individual operates outside of established norms. Recently, I explained the concept of this book to someone who does not have food sensitivities. Alluded she said, “I don’t see that people with celiac disease are ridiculed or isolated.” This is a perfect example of the response of those operating on the inside of a deep-seated “truth.” It represents how our struggles can be invisible to others. They laugh along with the jokes in the media (and admittedly, sometimes we laugh too). But, because they do not live with the repercussions, they do not notice. It is only when on the outside of a norm that one experiences the discomfort of ridicule that perpetuates social isolation.

Understanding these cultural constraints and arming ourselves with strategies to address them can help us navigate challenging social situations. We talked about developing a catch-phrase to encapsulate the attainment of the Big Shift and identity transformation. Rather than saying, “I have celiac disease,” which may imply that we are still struggling with the lifestyle and symptoms of the disease, we could say, “Please don’t be #glutencentric” indicating we accept our lifestyle, and so should you.

Forum Questions

1. Above, we talked about memes and having language to describe our GF lifestyle with no qualms or apologies summarized in one word. I suggested calling out practices by using the hashtag #glutencentric. Do you think having a word to describe these cultural practices would help us gain more compassion?

2. What situations can you think of where using #glutencentric would help?

References in Chapter 8

• Alice McKeon, coined word “litterbug” (1979, March, 2), Washington Post.
• Andreassen, O., Desikan, R., Wang, Y., Thompson, W., Schork, A., Zuber, V., Doncheva, N., Ellinghaus, E., Albrecht, M., Mattingsdal, M., Franke, A., Lie, B., Mills, I., Aukrust, P., McEnvoy, L., Djurovic, S., Karisen, T., & Dale, A. (2015). Abundant genetic overlap between blood lipids and immune-mediated diseases indicates shared molecular genetic mechanisms. Plos One, 1, 17. doi: 10.1371/journal.pone.0123057
• Arentz-Hansen, H., Fleckenstein, B., Molberg, Ø., Scott, H., Konig, F., Jung, G., Roepstorff, P., Lundin, K., & Sollid, L. (2004). The molecular basis for oat intolerance in patients with celiac disease. PLos Medicine, 1(1), 84-92. doi: 10.1371/journal.pmed.0010001
• Burke, T. (2006) Me Too. Retrieved from https://metoomvmt.org/get-to-know-us/tarana-burke-founder/
• Dawkins, R. (1976). The Selfish Gene. Oxfordshire, UK: Oxford University Press.
• de Certeau, M., Giard, L., & Mayol, P. (1998). The practice of everyday life, Vol. 2. Minneapolis, MN: University of Minnesota Press.
• Dusenbery, M. (2017). Doing harm: The truth about how bad medicine and lazy science leave women dismissed, misdiagnosed, and sick. San Francisco, CA: HarperOne.
• Freud, S. (1905/2009). Wit and its relation to the unconscious. Overland Park, KS: Digireads.com, Neeland Media, LLC.
• Hardman, C., Tatham., A., & Thomas, H. (1999). Absence of toxicity of avenin in patients with dermatitis herpetiformis. The New England Journal of Medicine, 340(4), 321. No doi.
• Hardy, M., Tye-Din, J., Stewart, J., Schmitz, F., Dudek, N., Hanhapola, I., Purcell, A., & Anderson, R. (2015). Ingestion of oats and barley in patients with celiac disease mobilizes cross-reactive T cells activated by avenin peptides and immune-dominant hordein peptides. Journal of Autoimmunity, 56, 56-65. doi: 10.1016/j.jaut.2014.10.003
• Heller, J. (1961). Catch-22. New York, NY: Simon & Schuster.
• Janis, I. L. (1982). Groupthink. Boston, MA: Houghton Mifflin.
• John Hopkins (2020). Blood Test: Gliadin Antibodies. Retrieved from https://www.hopkinsallchildrens.org/Patients-Families/Health-Library/HealthDocNew/Blood-Test-Gliadin-Antibodies
• Nanyakkara, W. S., Skidmore, P. M. L., O’Brien, L., Wilkinson, T. J., & Gearry, R. B. (2016). Efficacy of the low FODMAPs diet for treating irritable bowel syndrome: the evidence to date. Clinical and Experimental Gastroenterology, 9, 131-142. doi: 10.2147/CEG.S86798
• Smith, G. (2009). Reconsidering gender advertisements. In M. H. Jacobsen (Ed.) The Contemporary Goffman. Oxfordshire, UK: Taylor and Francis.
• Smulders, M., van de Weil, C., van den Broeck, I., van den Broeck, H., van der Meer, I., Israel-Hoevelaken, T., Timmer, R., van Dinter, B-J., Braun, S., Gilissen, L. (2018). Oats in healthy gluten-free and regular diets: A perspective. Food Research International, 110, 3-10. doi: 10.1016/j.foodres.2017.11.031
• Stillman, S. (2016). Why I hid my happy, healthy daughter’s medical diagnosis from her for as long as I could. Washington Post Blogs. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5J1X-0W31-JB4M-V2SC-00000-00&context=1516831.
• Yamamiya, Y., Cash, T. F., Melnyk, S. E., Posavac, H. D., & Posavac, S. S. (2004). Women’s exposure to thin-and-beautiful media images: body image effects of media-ideal internalization and impact-reduction interventions. Body Image, 2, 74-80. doi: 10.1016/j.bodyim.2004.11.001

Continue to: Gluten-Centric Culture: Chapter 9 - Travel Tips Restaurant Primer

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