Gluten-Centric Culture: Chapter 6 - From Shaky Ground to the Big Shift

Celiac.com 07/01/2022 - If you’ve been reading from the start (Chapter 1), you understand the social influences that work against your quest to diligently follow the gluten free diet. You’ve developed strategies for how to deal with each of the “vexing venues” (places we run into trouble) discussed in Chapter 2. In Chapter 3, you’ve uncovered how long-held “truths” don’t serve you, and you have implemented new “truths” imposed by your food intolerances. If you are a woman, in Chapter 4, you discovered how you might experience more pressure than your male counterparts when navigating aspects of society. In Chapter 5, you learned how the gluten free lifestyle plays out on the home front. Throughout, you’ve heard first-hand from participants from Dr. Duane’s nation-wide study, which have perhaps validated your personal experiences. In this next iteration of Gluten Centric Culture, we discuss what happens when you think you’ve got it all worked out and something goes wrong. In future chapters, we’ll discuss how things can go right more often because of your approach, even to the point where your life is rewarding and inspiring again.

Jean’s Back on Shaky Ground

Seven years into my gluten-free life, I broke out in another full-body rash. I couldn’t imagine what caused it. I thought my kitchen was completely gluten free, but something caused this. I asked my husband, “Did you by chance accidentally bring a doggie bag home from a restaurant that might have contained gluten?” “Nope,” he said. I wondered, “Did I buy something from the bulk bin at the grocery store?” Since the rash takes ten days to show up after ingestion, I looked at my calendar from ten days ago. That day, I went to a restaurant my friend wanted to go to that is famous for sliders. She ordered sliders, and I had a lettuce and tomato salad. On a cold dreary day ten days later, I walked several miles from campus to that restaurant just to ask if there was any chance that the salad I ate was cross-contaminated. They claimed it was impossible.

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I felt betrayed and angry. I am always so careful. The rash is so itchy -- I bought several bottles of clear calamine lotion and rubbed it all over my body. It gave me about ten minutes of relief before the itching raged again. I took histamine blocks in the day, and antihistamines in the night. Over the next week, the misery got worse before it got better as the rash bloomed over my body. It took ten days for the itching to subside and six weeks for it to go away completely. Meanwhile, I still didn’t know what caused the reaction.

The GlutenEZE strips are little chemistry packets (complete with a test tube) you perform at home to see what contains gluten. I used them to assess everything that might have been contaminated. After I examined all that I could think of in my kitchen, I contemplated what might be in my bathroom. I looked at the ingredients on my hairspray (some hairsprays contain wheat protein). I inspected the soaps I used to see if the ingredients changed in the new batch I bought. I read the labels on all the creams, lotions, foundations, blushers, lipstick, eyeliner, eye shadow, brow pencil, face-masks, skin hydrators… Nothing contained gluten. I was baffled. What could have caused this?

By day seven of the rash breakout, I had tested 43 things in my house (spending $473 on test strips and still no answer). Then I remembered that about ten days before getting the rash, I came home from school feeling ill. My head hurt, which is rare, my chest was tight, and I just wanted to lie down. I remembered taking an aspirin that day before I took a nap. The aspirin had been in my medicine cabinet for several years. I read the ingredients on the aspirin and one of the ingredients said “starch.” When I shook the GlutenEZE test tube, the contents exploded all over my bathroom. That had never happened before! I looked at the results and it showed the aspirin tested positively for gluten. Eureka! I finally found the cause. One little aspirin tablet caused all that misery.

Wait a minute. One little aspirin caused that? How much gluten can be in one little aspirin tablet? The reaction itself, and then the realization of how sensitive my body is, amazed me. I felt like I did when I was first diagnosed – questioning everything. During that frantic week of testing before I discovered it was one aspirin, I was afraid to eat in my kitchen, let alone anywhere else. I lost weight, and I existed in an uneasy condition of uncertainty and doubt. Even though I had lived several years harmoniously with my body, that incident made me feel like I was starting over. Taking an aspirin was a natural thing to do. It never occurred to me to read the label. But realizing what havoc it caused, becoming a preoccupation for weeks, I felt vulnerable and scared because everything in my house wasn’t “safe” after all.

Also, I thought I’d be more resilient to a tiny infraction of gluten in my body. After being gluten free all those years before, my body was as clean as a newborn baby. (That may actually be why I reacted so violently.) Wow! Up until that incident, I thought I had a little more “tolerance.” It made me question the “truths” I held as a person with celiac disease. I was thrown into a state of “food” limbo – rethinking what was OK for me to consume and what wasn’t.

The Disease Process

When we are diagnosed with a disease, we undergo a mental shift to accept what our body could do before and what it can do now (Rohrbaugh, Mehl, Shoham, Reilly, & Ewy, 2008). We have to learn how the disease inhibits us, and how to work around it. The first step is to figure out how to avoid experiencing undesirable physical symptoms of the disease. This includes relearning everything we can and cannot eat in a bite-by-bite process. Once we have a handle on that, then we think about how to enter back into our social realms with our new set of circumstances. We don’t want our disease to be the main topic of the conversation, of course, but we do need to learn how and what we can do to be included without causing ourselves to regress into the symptomatic phase. Previously taken-for-granted beliefs are shattered as new information is accumulated. What we thought was true before being diagnosed evolves, and even after living with the disease, we are forced to refine our “new truths.”

As we navigate the gluten free lifestyle, we defy I-know-best attitudes from authorities, diet discretion practices from friends and family, able-body biases and exclusionary etiquette rules everywhere we turn (see Chapter 2). A dietary edict such as, all in moderation may be a “truth” for most people, even in the medical field (Shanahan, 2017); but for a person with food sensitivities or celiac disease, moderate amounts of an allergen or gluten could make him or her very ill—even triggering a cascade of reactions leading to death. Therefore, truth for those with food sensitivities is drastically different than truth for the able-bodied general population.

New truths evolve as information is reinforced with experience. This is the point where we test our limits. For example, a newly diagnosed person may not believe she is that sensitive, clinging to the notion, a little won’t hurt you. When faced with a tempting baked treat, she may think about her asymptomatic friend with celiac disease who takes more chances. She decides to test her own limits and indulges in just one bite; if symptomatic, she may be surprised to experience an array of symptoms that force her to rethink that “truth.” These revised (post-diagnosis) food-truths are formed and reformed through experiences over time. As discussed in Chapter 2, people with food sensitivities or celiac disease may lose credibility with family members, as they struggle to understand the cause of their symptoms, and experiment with different diets to attain health.

Family truths morph over time. We are born into an existing conversation, and eventually learn to take part in it (Koenig Kellas, Kranstuber Horstman, 2015; Koenig Kellas & Trees, 2006). By visiting the stories over and over again, it makes us what we become (Somers, 1994). Our ability to unravel our new truths depends on personal experience, contemporary knowledge, and influential ideologies. When we share what we know with cohorts, we can arrive at an agreed-upon truth that works for the present moment -- until the veneer wanes -- and then we have to reassess what is true for ourselves. In a dynamic, complicated process, we engage in power struggles, as we evolve new “truths” when living with disease. To complicate matters, the idiosyncrasies of food-related illness are seldom understood by those who do not live with them (Metchikoff, 2014).

It is also in the disease process where we determine new trust parameters such as who we rely on to cook for us and whom we don’t; and personal level disclosure policies (discussed later in this chapter) such as how much we’ll tell publicly about our dietary needs. This ever-changing shaky ground is the start of the liminal, or “limbo” stage (Andrews & Roberts, 2015; Hout, 2017). As we move through understanding how to live with our disease, we go in and out of limbo. We fall back into the limbo stage when a social strategy we’ve used in the past fails us in a new circumstance, or when we are contaminated by a food we thought was safe. We have to rethink our resolves. That is the topic of this chapter.

Shaky Ground

The aspirin incident put me on shaky ground. I went from being confident about controlling my disease back to the limbo stage until I could figure out what caused the reaction. It is so easy to get complacent after a few healthy years with no reactions. My newly formed “truths” after being diagnosed were found to be untrue as I realized the seriousness of having celiac disease. The limbo (or liminal) stage is the in-between status (Nicholson, Babin, & Briggs, 2017), a restless and unsettling state, where old and new “truths” are challenged. Nothing seems consistent, and everything has to be re-thought through.

The “Limbo” Stage

There are two branches in the limbo stage: food limbo and social limbo. Food limbo is when something you thought you could consume turns out to poison you such as when a cherished packaged food changes ingredients, or a pharmaceutical changes binders. That’s a betrayal that requires work to isolate what exactly caused the physical reaction. Then there’s social limbo, discussed below, when pre-determined social resolves backfire and you have to come up with a new strategy. Being in the limbo stage sucks. It’s when you know you have a major problem and you don’t know what to do. It happens when first diagnosed, and it might be triggered by an incident that happens years later. It puts you in at funk of self-doubt, questioning everything to figure out how to best navigate living with the disease. Brenelle (#56) reports: “When I was first diagnosed, I spent a month crying… How could this happen? Where did this come from?” This sentiment describes how many people feel when initially diagnosed (though some study participants expressed relief to finally know the cause of their maladies). Individuals adjust their self-narratives that contribute to redefining and transforming identity after a life-altering diagnosis.

Though some people with food sensitivities pass through the limbo stage, some stay in it indefinitely such as in the circumstance of uncooperative family members, an inability to be assertive, or low self-esteem on the part of the person with celiac disease (Peniamina, Bremer, Conner, & Mirosa, 2014; Simpson, Oster, & Muir-Cohrane, 2018). Others more commonly go in and out of limbo as resolves work for a time, and then surprises happen, putting them back in the liminal state. Remember Gianna (#50) from Chapter 5, who described how her husband “just doesn’t get it”? Her kitchen is a “vexing venue.” Every day she wonders if what she eats will make her sick because foods that should be safe have been cross-contaminated by her husband’s careless habits such as slathering his bread with jelly and then re-inserting the knife into the jar. This ensures she exists in a constant state of limbo. That’s no way to live, especially in your own home. Not only is she worried about every bite of food she consumes, she also must wonder: If she can’t trust her husband to protect her with something as fundamental as food in the kitchen, how could she ever trust him to protect her from other threats in life? This kind of anxiety permeates all levels of a relationship. She must question what else he is doing that could harm her. How someone treats the special needs of another, especially when it imposes an inconvenience, is a harbinger of how they treat someone on all other levels. (Remember how waffles ended a marriage in Chapter 5?)

Thinking Differently

Now that we’ve covered “truth” and how it evolves, let’s move to discussing the idea of paradigms. This is important because it explains why it is so hard to change people’s opinions. Paradigms differ from ideologies in that ideologies are doctrines of beliefs held by specific groups of people, such as religious beliefs, governmental practices, or generally accepted rules of etiquette. Paradigms are a shorthand model or pattern for a generally acceptable way of thinking. It’s something we “know” so we don’t have to give it a lot of thought (Haverkamp & Young, 2007). For example, to most, a birthday cake signifies warmth, happiness, and a symbol of love. Consider a newly diagnosed diabetic attempting to control glucose levels with dietary restrictions. That birthday cake now signifies soaring glucose, sickness, potential coma, blindness, or even death. People who have diabetes have to “think differently” (Frank, 2013, p. 6). Within the new diabetes paradigm, the birthday cake has been altered from something fun to something dangerous. Paradigms are a quick reference template, or a kind of shorthand for comprehension, where an individual avoids the need to relearn the same things by drawing on past experiences (Bruner, 2002).

Paradigms make life easy. For example, we know the earth is round. But before, when people thought the earth was flat and then Galileo determined it wasn’t – look at what happened to him! People don’t respond well when their paradigms are challenged. When paradigms change because of illness or dietary restrictions, all of your taken-for-granted knowledge must be reassessed. The change in the diabetic person’s understanding of birthday cake illustrates how a cake must now be viewed with regard to the physical responses it causes (Bruner, 1985). Other family members are forced to contrast their earlier concept of a birthday cake in light of the medical implications of diabetes—thus, they alter their original paradigm. Altering paradigms puts most in a state of limbo until they work out new paradigms.

In and Out of Limbo

Sometimes the state of limbo subsides as we work out strategies, experience success, alter our truths, and our loved one’s truths. But it’s not always smooth. Even with new resolves, redefined truths and adaptive strategies, life situations can throw us right back into it. The limbo stage is best described as experiencing uncertainty and self-doubt, where resolves are challenged, and new decisions must be made in order to navigate food-related social activities gracefully.

The limbo state can be triggered when trust parameters are tested. For example, Robert (#12) from Chapter 2 who had gluten free meals prepared by his spouse grew to trust others in his family to fix a gluten free meal for him. Then, his aunt concealed the store-bought cheesecake, and he was sickened. The sickness caused Robert to enter into the liminal stage because something he thought he had under control didn’t work. People go in and out of limbo because things may go along smoothly for a while, and then something happens to throw you into the “back to the drawing board” phase. For example, Quinn (#41) from Chapter 5 who thought she had an understanding with her son, entered into a social limbo state when he insisted they go to the restaurant that had nothing for her to eat. She realized her son didn’t have her best interests at heart, causing her to feel uncertain about choices he made on her behalf.

While visiting friends, Dustin (#46) describes how he entered into a state of food limbo when he realized that all unexamined food was unsafe to consume, even food prepared for him by his wife:

If someone had told me before how [difficult it is to adhere to the gluten-free diet], I would have thrown up my hands … I wouldn’t have believed it. My wife and I went to a pool party four hours away with food to last for a couple of days. She made a bunch of food and brought it in a cooler. I ate it and became sicker than a dog the whole time. My sensitivities went nuclear. I was so tired, I couldn’t move. I kept having to visit the bathroom. I had pain and was nauseated. This isn’t working! We had an argument on the way home. ‘What is the issue?’ she asked. She’s mad, I’m mad, and I don’t feel well. I am questioning the ingredients in everything, on the grill, something was in the grilled chicken. Or maybe the garlic powder … this was the day I realized that everything may be cross-contaminated.

Dustin’s story illustrates how the event unfolded differently than what he expected, throwing him into food limbo to figure out what exactly caused the reaction; as well as social limbo, because his illness caused him to isolate from the rest of the group, embarrassing him in front of his wife and friends. After having this revelation, he had to redefine every aspect of his “eating” and “social” life, to learn new “truths” and to figure out how to gracefully exist. He had to wonder why the foods prepared by his wife, someone he previously trusted to cook for him, caused him to become so ill. He was in a state of uncertainty and limbo for months after this incident.

Jean, Wear a Hazmat Suit!

I have been a part of a non-profit women’s organization for over thirty years. Over time, I have explained my health idiosyncrasies to them, and regularly bring my personal bowl of food to potlucks or dinner parties. I rarely eat any food I don’t prepare myself. They have seen me be careful and often comment on what I can or cannot eat. I have felt kindness and compassion from these women, who have been with me since I was first diagnosed. I felt “understood” until a recent incident. The group was going to volunteer for Oktoberfest to serve beer at a booth as a fundraiser. We learned we could raise around $3,000 for our non-profit just by serving beer. That sounded like fun, so I signed up for a shift. We even thought about wearing beer-maid costumes!

My husband used to be a bartender a long time ago while attending college and learned about my volunteering several weeks after I committed to doing it. He said, “What are you thinking?” You will definitely get cross-contaminated with beer. You’ll be serving people as fast as you can pour. You’ll get covered in beer! Fizz will get into your eyes, nose, and mouth! You can’t do that!” It never occurred to me that I could be cross-contaminated just serving beer, but as I thought about it, he was right. After reacting to breathing flour-dust just sitting a couple of hours in a pizzeria, I realized I am even more sensitive than I thought. The idea of being exposed to gluten for an entire afternoon worried me. So, I wrote to the group and explained that with celiac disease, it was unsafe and asked if someone could substitute for me. Remember, these are people I have been in a group with for over thirty years. We know each other well and even consider ourselves “sisters.” I care deeply for them, and they for me.

The ensuing email “reply to all” chain surprised me. One person said: “Oh, you’ll be OK. Just be careful.” Another said, “Just wear gloves.” One said, “You are being over-dramatic.” Another said, “I agree with you, it will be a beer-bath. Don’t come. It’s not safe for you.” One said, “You should have contacted me directly and not asked the group for a substitute. Now everyone thinks it will be an unpleasant experience and more volunteers may drop out.” Another said, “Jean, maybe you should wear a hazmat suit – now there’s a look.” Rather than treating me as an individual taking my “no” without debate, this group decided it was up for public negotiation.

Though their comments were probably well-meaning, I was confronted with a host of negative feelings. As I read the emails, I felt mocked and shocked that those loving “sisters” were debating the level of my tolerance in a public forum. I guess I put myself in the situation by “replying to all.” I was also incensed that they felt they knew the nuances of my disease so well that they could judge what I could or couldn’t tolerate. I felt like even though I had explained my situation to them over the years, nobody cared to understand. The email chain threw me in a state of “social” limbo.

In my case, the group stereotyped what they thought I could handle – not asking or listening to me, but rather trying to find ways to include me. In one sense, the email exchange could be viewed as compassionate, because they offered opinions for ways to mitigate the risk for me. In another way, it represented a collective decision-making process where others make incorrect assumptions and act on them. It also illustrates how messages escalate in electronic formats when directed to many people. How could I apply respect and compassion to this situation? I could have replied to all explaining (again) my diet idiosyncrasies, but I really didn’t want to do that. It seemed “too public” and could start another slew of opinions. I could have suggested that I run a hard-cider station for the gluten-intolerant, but since beer companies were sponsoring it, that wouldn’t work. Rather, I decided to command respect. I stated my decision not to go, found a substitute and said no more.

“Men don’t tell you they are ill. No man wants to be weak.”
William (#60)

Levels of Disclosure

The limbo stage also entails determining “levels of disclosure” guidelines. In spite of social norms, most people with celiac disease eventually disclose to ensure they receive gluten free meals prepared by someone else (Samuels, 2003). Those diagnosed with a body-compromising disease must calibrate their trust parameters to understand how to perform day-to-day activities while interacting with others. People who have disabilities regulate their lives on a schedule of pre-determined regimens, planning ahead in order to stay well or to deal with illness (Corbin, 2003) without others noticing as we learned from Ava’s (#7) “accidents.” Ava regulated her schedule to accommodate her intestinal undulations, which proved unpredictable. This takes a lot of time and can cause conflict with non-disabled people on the job and in social settings.

People with hidden disabilities report that they “develop personal disclosure policies, with a variety of specific predetermined versions of their story” depending on the audience (Valeras, 2007, p. 76). Similarly, the person with celiac disease must decide to whom to “come out” and how much to disclose (Samuels, 2003, p. 237). Disclosure can trigger responses from kindness and compassion, to ridicule and mockery (Samuels, 2003). As Ava experienced, chronic diseases ebb and flow, often surprising sufferers with unexpected symptoms that perplex others and alter daily life (Charmaz, 2006).

Vulnerabilities are exacerbated when the food sensitive adult ventures out to a family dinner, restaurant, or a friend’s house and must disclose their dietary restrictions in order to eat a safe meal. Disclosure may cause unwanted attention, scrutiny, and skepticism from others in a social context as described by Claire, (#25) who says, “I’m a little on the shy side, and at the dinner table when we are out to eat with friends, everybody quiets down when I talk to the chef.” Disclosure requires a high level of self-esteem and courage (Peniamina, Bremer, Conner, & Mirosa, 2014). Navigating social situations is problematic particularly when dining out. I-know-best attitude and able-body biases (Chapter 2) prevail in restaurants, where celiac disease sufferers asking for a safe meal are subject to restaurant policies and server judgment. In particular, these edicts alienate and stigmatize celiac disease sufferers who must avoid every molecule of gluten as conveyed by Hazel (#22):

I think the hardest part that I have with it is, like ‘dairy free,’ people don’t even question that. But if you say, ‘I’m gluten-free,’ there is a lot of ugly stigma about it. I just wonder why it is so hard for people to accept it? I used to be very offended by all of the videos on the Internet making fun of people who are gluten free. And, now, I’m like, ‘Well, that does apply to some people because there are a lot of people who do it for non-medical reasons. But they’ve kind of ruined it for those of us who don’t have a choice.’

Hazel expresses frustration that when she disclosed her dietary needs, it was questioned, while other food-related issues such as lactose or casein intolerance are taken seriously. She further explained that she feels stigmatized asking for gluten free foods in restaurants and suggests that “fad dieters” have diminished her credibility as a person with celiac disease.

Disclosure is done through narrative and often, the story must be told and retold in order to garner understanding and cooperation from friends and family and, as Hazel points out, there are many doubts with gluten intolerance. The person with celiac disease may appear inconsistent and fickle to family members. I recall a situation that happened while I was visiting a friend in a different city. I refused to eat some cookies she bought from a local bakery because they contained gluten. Later that day, she caught me eating a “cookie” I brought from home when she walked by my bedroom. She looked at me eating it as it to say, “I thought so…” but in fact the cookie was gluten and even grain free – a recipe I developed so I could travel with high-fat “cookies” though it wasn’t at all what she thought of as a cookie. We never had a chance to talk about it, but her look said it all. She thought I had contradicted myself by refusing her cookie and eating mine.

I’d Rather Die Before Giving Up Bread

Part of the limbo stage is testing alternative responses in scenarios to see what works. In my study, I learned that people have deep-seated attitudes about food. They have opinions of what is “right,” and what is “weird” to eat. Some expect traditional dishes on holidays or won’t give up beloved treats even if they experience illness from consuming them. For example, Liza (#68) with heart disease was told by her doctor to stop eating chocolate. Even though the doctor felt that the saturated fat in the chocolate was clogging her heart, causing her to be weak and short of breath, she refused to give up her indulgence. A friend told me her doctor told her to quit eating gluten and that she would rather die before giving up bread. The idea of giving up foods is anathema to some. We have to be sensitive to the fact that we also may have long-held paradigms about food. While in limbo, we come to terms about what we can accept as alternatives to traditional foods. The limbo stage forces us to be flexible with social situations and food choices.

Foods once thought of as “good” are now considered “bad.” This can cause conflict and feelings of alienation on both sides. Hosts may be insulted, and the person with celiac disease may be stigmatized by other family members, and perhaps even excluded from future invitations to extended family meals. Narratives and family-meal folklore have suddenly been altered, which causes all involved to readjust their perspectives in order to understand the new physical needs of the family member. Additionally, family members need to be resilient to change. Struggling between the unpleasant choices of not eating, risking cross-contamination, or bringing separate foods, Sarah (#31) describes an extended family that has not adapted to her needs:

All my family lives out of state in Texas. We see them over the holidays. For Thanksgiving, I bring my own gluten-free turkey, potatoes, and bread. We’ve tried to educate the extended family members, but I think because we see them so rarely it is easily forgotten. And, I really don’t like making people accommodate for me, especially large groups of people. I would rather just provide my own food rather than make people worry.

She describes a situation where she prefers not to impose her needs on her family’s meal, saying that it is too much trouble to educate them. Her adaptive strategy is to arrive a day ahead to shop for “safe” foods for the holiday meal. In this case, Sarah has given up trying to educate her extended family because of personal reluctance and their lack of interest in accommodating her needs. So instead, she brings foods that look similar to the traditional foods her extended family is enjoying. In this way, she “fits in” with their expectations of what one eats on Thanksgiving. Her resolve indicates that she is shifting from limbo to a new state of homeostasis, or the Big Shift where her truths are defined, whether or not her family adopts them. We’ll discuss this new state of homeostasis but first, I want to point out that there are different responses to celiac disease among those who have it, depending on how much they react to consuming gluten.

Asymptomatic vs. Symptomatic

In my research, I discovered that the more a person reacts to gluten, the more uncomfortable he or she is in social situations. Asymptomatic people describe how they can go to a restaurant with their families and enjoy the “gluten free” selection on the menu without a qualm. Like asymptomatic Samantha (#29) who says, “I trust restaurants to provide me with a gluten free meal. Cross-contamination is not an issue for me.” Less symptomatic respondent, Audry (#61) says, “When I go out to eat, I take digestive proteins. Even though I avoid gluten, I cannot tell if the enzymes work because sometimes I still have problems.” People who do not react to cross-contamination seem to navigate social situations more gracefully than those who severely react. Those who are symptomatic have a sense of unrest about eating anything in a restaurant where gluten is present because the slightest amount can trigger a reaction.

The chart below depicts a continuum where one end is asymptomatic and the other end is extremely symptomatic. Everyone with celiac disease falls somewhere on this spectrum. I call this the Eudemonia Continuum. I love that word, eudemonia, because it is the exact-right one to use. Eudemonia means having a sense of well-being, contentment, and calmness about something, and in this case, we’re talking about “life.” This is what we all strive for in life. Those who are asymptomatic enjoy a higher sense of well-being than those who have many symptoms. They freely interact in society, making a few small adjustments. On the other hand, symptomatic people take no risks, often eat a grain free diet, and seldom eat foods they do not prepare themselves. Those in the middle take some chances when in public, even though they maintain a gluten free home. Varying degrees of symptoms is a significant reason there is so much discrepancy in the lifestyles of individuals who live with gluten sensitivities. There isn’t a consistent response.

A Sense of Well-Being vs. Sense of Unrest

Lucy (#26) who is asymptomatic describes how she frequents restaurants all around the city with her husband and family. She says her life is “normal,” even though she has celiac disease. She said she enjoys gluten free beer, breads, and pastas everywhere she goes. She describes what I imagined for myself when I was first diagnosed. I thought, “Oh, just a few substitutions, and I’ll be fine.” Most respondents reported stories as told by Vivian (#51) who says: “I know a lady in a woman’s group I am in who has celiac disease. She’ll get a cupcake and eat the frosting but not the cupcake.” Vivian is highly reactive, and feels this woman who is not symptomatic undermines her credibility with the rest of the women in the group since she isn’t as careful. Vivian suspects the lady likely has antibodies as a result of her indulgences. People in her group say, “Jan is eating that, why aren’t you?” She replies by saying, “I have a more severe case of celiac disease.” Only a few of the study participants reported being asymptomatic.

Most highly symptomatic respondents report shying away from eating out or in friends’ homes and live in a state of unrest, concerned about when they may next accidentally get cross-contaminated. Asymptomatic people seldom experience the BIG Shift (discussed below), but people who are highly symptomatic do, because their established “truths” are completely disrupted and have to be redefined in many contexts. Previously embraced paradigms that worked before have to be challenged in every venue. New strategies have to be established. We do this through narrative with others and self-talk as our illness evolves.

THE BIG SHIFT

For most, the limbo stage ends when our new resolves allow us to comfortably function in life again. Coined by Cannon (1932), the word “homeostasis” refers to a state of equilibrium experienced by the body when all systems function properly. When this steady-state is disrupted, the body strives to regain it. For example, the body maintains a steady temperature of 98.6 degrees. When this is threatened, the body adjusts to preserve its desired steady state. Cannon cites nutrition, psychological, and physical elements as potential homeostatic disruptors of the nervous, cardiovascular, muscular, skeletal, lymphatic, respiratory, and digestive systems. Similarly, after a person is diagnosed with a disease such as celiac disease, “truths” are altered to the point where participants in the study declared that their “steady state” of existence or homeostasis would forever be changed.

Dustin described beginning his BIG Shift when he spent the weekend being sickened after eating the food his wife prepared for him. He had to reassess everything he thought he knew as he realized all old “truths” no longer worked. That was the limbo stage. Dustin’s ultimate BIG Shift is illustrated when he describes how his food-related practices have been completely altered. For example, he says he frequently eats before going to events or brings food he has prepared himself to protect against cross-contamination, to weddings, group dinners, and banquets. He says, “If you don’t make a big deal about it, then it isn’t a big deal.” This moved him out of limbo and into the BIG Shift stage. Individuals diagnosed with a disease undergo a “homeostatic shift” process that disrupts the individual’s old equilibrium to a new (permanent) constant. Since it’s broader than just physical functions, I’m terming it the BIG Shift. For a person with celiac disease, our sense of what used to be “normal” is disrupted with the realization that the disease must be recalled whenever food is consumed. Once new truths are solidified, the BIG Shift is when these practices become the new steady state including what we eat and how we engage in social situations. We protect ourselves, we know what we can and cannot eat, we are careful, and we are armed with a set of redefined truths. We’ve surrendered to our situation in every venue of life. We don’t fight it anymore. We don’t defend it either. We are what we are and we accept it. That’s the BIG Shift.

The BIG Shift Process

The following figure illustrates the BIG Shift process:

As the figure shows, a person is in the “current” normal, balanced state before a life-altering event such as the diagnosis of celiac disease. His balance is disrupted and he questions everything he thought he knew. Limbo begins when he discovers old “truths” no longer serve him, and he has to figure out a new tact. This is a stage of shaky ground, where nothing is consistent. But, as humans, we seek consistency and normalcy. As we experiment with new “truths,” we establish a new set that work, and then we have a new definition of consistency. At that point, we have gone through the BIG Shift process. But note there are arrows from the new state of BIG Shift back to the limbo stage. We go back and forth as “truths” and resolves are disrupted.

Coming to grips with the gravity of my disease is what imprinted that Thanksgiving “flour” experience in my memory (see Chapter 5). You may recall, everything was going along fine until the bag of flour was plunked down on the counter, causing flour dust to fill the air and settle on food set aside for me for dinner. The shift from mundane ritual behaviors, to survival mode, trying to avoid inhaling or ingesting gluten was when I entered into the limbo stage. I realized I had to redefine “truths,” juggling participating in rituals and coming to terms that engaging in activities that are normal for most, are health-threatening to me. It was the moment when I realized that social and familial life, as I had known it previously would be forever altered by my gluten-avoidance needs. It was unsettling because I knew I would have to redefine how I attended and participated in all future social events. It hit me like a ton of bricks, when it dawned on me finally that I’d have to go to extremes that may look positively weird to an “outsider” and maybe even seem extreme to a person with asymptomatic celiac disease.

Jean’s Story - Thanksgiving Revisited

The year after the flour incident, we were invited back to Dallas for Thanksgiving. Empowered by the stories I heard from respondents who had experienced the BIG Shift, I tried a new approach. I told my hostess that I would be providing my own food this year. (She seemed relieved that she did not have to accommodate my needs.) My husband ensured we had a hotel with a kitchen, and after we landed, we headed to the grocery store, so I could purchase gluten free foods to eat during our stay. While my friend, her husband, her daughter’s family, and husband dined on the beautiful buffet of turkey, dressing, rolls, gravy, and many lovely desserts, I ate my food in a bowl that I brought with me. Nobody batted an eye, and nobody probed about my diet. I ate alongside everybody else, participated in the lively conversation and enjoyed a pleasant experience. That experience empowered me to bring my bowl to all food-related social events that take place in homes thereafter. With that success under my belt, I experienced the BIG Shift. I accept my dietary requirements with no apology. I have a new attitude.

On the Other Side

Once through the BIG Shift, on the other side of limbo, a person has a new “I’ve got this” attitude, exuding comfort with newly established “truths” and the confidence to implement them. Life is much better once a person experiences the BIG Shift. For example, take Mila (#10) who considered her husband’s comment about the gluten free waffles as the final straw (see Chapter 5). In that moment, Mila went from the limbo stage to entering into the BIG Shift. She started taking initiative to rid herself of her uncaring husband, realizing that no matter what she did, he wasn’t going to change, and that continuing to live with him was going to ultimately cause her peril. I’m not advocating divorce as a way to deal with a non-gluten-free household, but I applaud the initiative she took to control her own life. As I’ve mentioned before, for Mila, this was a turning point. She realized that his lack of cooperation was a telltale sign that he was not interested enough to fix other problems. She concluded he was inconsiderate in many other aspects of their marriage; this was just one example. She also knew that she had to take the initiative to make a change, scary as it was, to protect her health. She moved from the limbo phase to the BIG Shift, where her life was now in her control, not in the hands of an uncaring spouse.

Lucy (#26) describes a reoccurring family situation in this scenario:

I had a birthday for my son’s party. I have always been the one to work really hard at cooking a gluten-free cake so he could eat it and I've become very good at it. I feed gluten people gluten-free and they don't know. So, there was a birthday party, and I made gluten-free cupcakes and cake, and I had other snacks for the other little kids. It was all gluten-free. And my family shows up, and they brought a regular cake, and they put it on the counter and they said, ‘Here, we brought this because we knew you would make that gross gluten-free cake, and we wanted to be sure that we had something else.’

She described this as typical behavior, saying she tries not to remember the hurtful things, because she wants her family to be a part of her life. When asked how she dealt with this situation, she said:

I absolutely refuse to react to something like that. So, I took the cake and I said, ‘Okay, thank you, I will just put it over here. And I just set it on the other end of the counter so it is not close to the gluten-free stuff. That's it. I did that and walked away. But, like I said, after 15 years of just being very, very consistent things have improved.

Lucy’s adamancy in spite of her family’s insulting behavior is an illustration of how the BIG Shift evolves and “plays out” over time. Her consistency ensures her sustained health, and the health of her son in family food-related situations.

Let’s consider Grace’s (#17) home situation where her husband insisted on eating only “beige” foods such as pasta, pastries, bread, cookies, cake, buns, crackers, etc. She lived in the limbo stage, dodging gluten at every turn, and suffering the consequences of a reaction while co-existing in that toxic environment. She told of how he repeatedly taunted her to eat gluten, asking, “How much can you have? Can’t you just have a crumb?” Her husband did Internet research, to prove her wrong when she resisted. Grace says, “That was very, very stressful.” She confronted her husband and asked him to stop eating those gluten-containing beige foods. He refused. They reached an impasse because of his gluten-doubt attitude. This exchange illustrates the non-adaptive response where she could have existed in the limbo stage of unrest and no resolution had she continued to live with his gluten-doubt attitude, but she ultimately moved to their vacation home in California, to be closer to her daughter who goes to school there. By changing locations, she shifted to a place of equilibrium describing how she now cooks beautiful, colorful meals for herself and makes it a daily practice to go to the farmers market to purchase interesting vegetables to accompany her dishes.

Scarlet (#14) conveyed the BIG Shift with a simple story. She has a collection of pretty lunch boxes that she brings to all of the food-related occasions she attends. Her family and friends know she is going to bring one, even to a wedding (she has a special wedding lunchbox). Scarlet has a lunchbox for serious business lunches and another for fun gatherings. I really admire her attitude. She is so confident! When I talked with her, I was still in the limbo stage. I was still apologizing to people, trying to eat foods they said were gluten free, getting sick, and still explaining the nuances of my diet. But her acceptance of her dietary issues, and the way she gracefully dealt with them illustrated someone who had completed the BIG Shift, and gave me a lot of encouragement to stop wavering. She didn’t hide her food concealed in her purse either. She “put it out there” unabashedly without apology and enjoys the foods she makes for herself. I applaud! Her example empowers me to be decisive and helped me complete the BIG Shift.

But wait, there’s more! After completing the BIG Shift, many of the respondents report how their identity positively transformed as a result of living with celiac disease. Some found themselves in related occupations, while others learned to be more assertive about their needs. Even though people adapt in different ways, there tends to be a pattern for how we remake ourselves with the disease. That is the topic of the next chapter – the individual’s transformation. I love this part! It’s where the endings are happy because people have figured out how to live with their new set of circumstances.

Need help managing your gluten free lifestyle? People seek out Dr. Duane to live the lifestyle they dream of. Please visit www.alternativecook.com.

Discussion Questions:

1. Please describe a time when what you thought was “true” about having celiac disease turned out not to be true? How did it affect you?
2. Have you gone back and forth in and out of the limbo stage? How do you navigate your way out of it?
3. Please share your process of accomplishing the BIG Shift in your life. What’s been the biggest positive change as a result?

References in Chapter 6

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Continue to: Gluten Centric Culture: Chapter 7 - Individual Transformation

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