Gluten-Centric Culture: The Commensality Conundrum - Chapter 3 - Where Ideologies Collide In Public Settings

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.

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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:

1. What "vexing venues" have confronted you as you navigate the gluten-free diet?
2. What was the process you went through in order to become diagnosed?
3. 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

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