Celiac.com 05/31/2021 - For people without celiac disease, does eating gluten have an impact on brain health, specifically on cognitive function? A recent study of nearly 14,000 non-celiac women at midlife revealed no statistical evidence of any association of long- or short-term gluten intake with cognitive function.

More and more people are eating gluten-free for perceived health benefits that may not be real. It's true that cognitive impairment, sometimes called "brain fog," is a common symptom reported by many people before they are diagnosed with celiac disease. In those cases a gluten-free diet generally results in improvement of the symptoms. However, data are lacking in individuals without celiac disease. A recent study set out to "examine whether gluten intake is associated with cognitive function in women without celiac disease." 

Their study included US women who participated in the longitudinal, population-based Nurses’ Health Study II and had not previously or subsequently been diagnosed with celiac disease. Subjects answered a questionnaire that was used to cumulatively average gluten intake cycles prior to cognitive assessment. They then took a battery of tests on psychomotor speed and attention score, learning and working memory score, and global cognition score. They research team found no connection between long-term gluten intake and cognitive scores in middle-aged women without celiac disease. 

Their results, "do not support recommendations to restrict dietary gluten to maintain cognitive function in the absence of celiac disease or established gluten sensitivity." But how useful was the study? What did they actually measure? What did they actually show us? The study actually reveals very little, if anything.

Celiac.com does not recommend a gluten-free diet for people who do not have celiac disease or gluten sensitivity, but we also do not oppose it. A properly structured gluten-free diet can be every bit as nutritious and health-promoting as a diet that contains gluten. 

However, we also do not agree with studies with conclusions that seem to be designed to scare people off of a gluten-free diet, or to soft-pedal a diet that contains wheat. The study does not say that there is no cognitive benefit to giving up gluten for people who do not have celiac disease or gluten intolerance, or that those without celiac disease might also benefit from a gluten-free diet.

The benefits or harm of a gluten-free diet in people who are not gluten-free remains poorly studied. Even in people with celiac disease, the implications of a long-term gluten-free diet have not been well-studied, and plenty of studies make unproven nutritional assumptions about those implications based on scant data.

We believe that each person must choose their diet for themselves, and that many folks without celiac disease may choose to eat gluten-free for reasons that make sense to them. Some may do so because they perceive themselves to think more clearly when they do not eat wheat. 

The problem, from our perspective is that the study basically says: We looked at a bunch of women who eat wheat and gluten in various quantities. Their brains seem fine. Nothing to see here.

People concerned about a potential connection between brain function and wheat consumption deserve more than a study that says, in effect, "hey, plenty of women eat gluten, and whether they eat a lot or a little, their brain test results seem fine." Telling us that eating wheat does not seem to cause brain impairment in non-celiacs is helpful. It is. But it's only part of the picture.

As far as we can see, none of these subjects had brain function tests when eating gluten compared with tests when they were gluten-free. Nor did the test compare women who ate wheat to similar women on a gluten-free diet (but really, what was needed here was the former, a comparison of the same group of people, perhaps tested when eating different gluten levels, then re-tested after a prolonged gluten-free diet). 

For all of the seemingly grand implications of the study, it really doesn't tell us much about brain function in people who eat gluten. It doesn't tell us if there are any benefits brain wise to giving up gluten. Look, it could be that giving up gluten has a negative impact on non-celiacs, but that remains unproven.

We really need a more comprehensive and focused study to help tell us what, if any, impact gluten has on the cognitive function of non-celiacs, along with what benefits, if any, they might have when giving up gluten.

Read more in JAMA Netw Open. 2021;4(5):e2113020

The research team included Yiqing Wang, PhD; Benjamin Lebwohl, MD, MS; Raaj Mehta, MD; et al Yin Cao, ScD, MPH; Peter H. R. Green, MD; Francine Grodstein, ScD; Manol Jovani, MD; Paul Lochhead, MBChB, PhD; Olivia I. Okereke, MD, MS; Laura Sampson, MS, RD; Walter C. Willett, MD, DrPH; Qi Sun, MD, ScD, MMS; Andrew T. Chan, MD, MPH. They are variously affiliated with the Clinical and Translational Epidemiology Unit, Massachusetts General Hospital, Harvard Medical School, Boston; the Division of Gastroenterology, Massachusetts General Hospital, Harvard Medical School, Boston; the Celiac Disease Center, Department of Medicine, Columbia University College of Physicians and Surgeons, New York, New York; the Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York; the Division of Public Health Sciences, Department of Surgery, Washington University in St Louis, St Louis, Missouri; the Division of Gastroenterology, Department of Medicine, Washington University in St Louis, St Louis, Missouri; the Rush Alzheimer’s Disease Center, Rush University Medical Center, Chicago, Illinois; the Department of Internal Medicine, Rush Medical College, Chicago, Illinois; the Division of Gastroenterology and Hepatology, Johns Hopkins Hospital, Baltimore, Maryland; the Channing Division of Network Medicine, Department of Medicine, Brigham and Women’s Hospital and Harvard Medical School, Boston, Massachusetts; the Department of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston; the Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts; and the Department of Nutrition, Harvard T. H. Chan School of Public Health, Boston, Massachusetts.

Celiac.com 05/21/2021 - If you're like most people with celiac disease or gluten sensitivity, you probably went through quite an ordeal to figure out that gluten was the cause of many of your health issues. In most cases, including mine, it can take years to figure this out, and those are years you've lost to poor health which you can never get back.

For most people with gluten sensitivities a strict gluten-free diet, usually for at least a year or two, will resolve most issues caused by gluten, but this is not true for everyone. In my case it took about two years to really feel good again, and I also had to exclude other foods like corn, cow's milk (casein), chicken eggs, tomatoes, and garlic, even though they are gluten-free, and considered safe for a gluten-free diet. At the 2-3 year point I felt so much better that I began adding back everything into my diet except for gluten, and it seemed that those items no longer bothered me.

Fast forward 25 years and I now realize that I've been having issues again with feeling bloated after I eat, which is accompanied by a growing waistline that isn't necessarily made up of fat, but seems more like inflammation in my intestines, similar to what I experienced when I was eating gluten, but not nearly as bad. I've rechecked my gluten antibody levels, and it doesn't seem to be related to hidden gluten in my diet. I'm not alone here, and it turns out that many celiacs will not make a full recovery without taking more steps than just a gluten-free diet.

To try to figure out what was going with me I decided to take an offer that I couldn't resist: One of the advertisers on Celiac.com, Roger Deutsch of PreviMedica, offered to give me a free ALCAT food sensitivity test panel in return for me writing this article about my experience (PreviMedica also offers a celiac test, included with their celiac, IBS, Crohn's array).

The ALCAT test analyzes the white blood cell (leukocytes) responses to blood that is incubated with extracts of foods, molds, chemicals/food additives, antibiotics and preservatives, and the company claims that this process can identify food intolerance issues that can trigger inflammation in sensitive individuals.

If you do some Google searches on the test you may find that it's been shown in research to help some people lose weight, and research has also shown that it may provide clinical improvement in those with IBS. While searching you may also find criticism of the ALCAT test, including claims that ALCAT test results are not consistent or replicable, which I brought up with Roger, and to which he responded: “Those statements are propaganda from a competitor. The test reproduces nicely...see independent studies from reputable institutions.” After sorting thought all this I decided that it was worth it for me to pursue ALCAT testing, in the hope that I could finally track down foods that might still be causing me issues.

Soon after my conversation with Roger I got a call from a blood draw company who makes house calls, and we scheduled a time for them to come by. The person showed up at my house on time, was very professional, and painlessly took the samples needed for the ALCAT testing. I got my results back around a week or two later, and to summarize them I ended up with 4 “severe” reactions to different foods that I should strictly avoid for at least 6 months, 23 “moderate” reactions to different foods that I should avoid for 3-6 months, and 66 “mild” reactions to different foods that I should only include in my diet on a 4 day rotational basis, unless the foods are items that I consume often, and if so, I should also exclude those items for an initial 3 month period.

At this point I must bring up a common criticism that I've seen regarding food allergy testing—that you're often faced with a daunting list of items that might trigger reactions, and avoiding all of those foods could be very difficult. The good news in my case was that the 4 items on my “severe” list, apple, red palm fruit, yam, and zucchini, are all things that were easy for me to avoid, as I've never been a big apple, yam or zucchini fan, and have never, as far as I know, even tried red palm fruit. However, several items on my “moderate” list were definitely a shock to me, and included items that would be very difficult from me to avoid, including: rice (white and brown), coffee, garlic, mustard seed, turmeric, almond, avocado, beef, pork, and casein (both cow's and goat's milk). Several of these foods are daily staples, including coffee, without which Celiac.com might not even exist! Yes, I'm a java junkie, so seeing coffee on this list was a serious and unexpected blow.

For the next four weeks I went all in, and successfully modified my diet to meet the new requirements of my ALCAT test results. The first thing I noticed was that I lost some weight, and, as it turns out weight loss is common when going on an ALCAT diet. I also noticed that my abdomen seemed to shrink, and it didn't seem to correlate directly to the relatively small amount of weight that I lost, so I believe that this part was directly related to a decrease in intestinal inflammation.

During the time I was on the diet I felt better than ever, but I also found that staying on the diet did not get any easier for me. In my case it was due to the fact that my wife does most of the meal preparation in our home, and given the fact that she's from Taiwan, my asking her to exclude things like rice, garlic, pork, and other key ingredients used in Asian cooking was pretty difficult for her, and she was not about to adopt my new diet. I also never really got used to living without coffee, and that was the first thing that caused me to waiver from the diet. After breaking down and adding coffee back into my daily routine, a few other things crept back in, mainly because my wife continued making some outstanding dishes that I found increasingly hard to refuse (ok, I blame myself here...there are no two ways around it!).

I was on my customized ALCAT diet for long enough to realize that it definitely had a positive effect on my weight, inflammation level, and overall feeling of well-being, but I also realized that one of the main criticisms I heard about food test results was true: excluding large numbers of foods is indeed hard to deal with. In this case the shortcomings were entirely mine, especially because the folks at PreviMedica had contacted me during the time I was on the diet to offer any assistance, including dietary counseling, which I declined.

At this point I've not given up on the ALCAT diet, and am trying to plan a better time for me to begin attempt number two. I've never smoked cigarettes, but have seen others quit them and know that it can often take several attempts to be successful. Perhaps the second or third time I try the ALCAT diet will be the charm?

I also want to share some questions I had for Roger during the course of writing this article, along with his, and his colleague's responses, which are below:

Q: During the late 1980's I had RAST (radio-allergo Sorbent Test) serum allergy testing done, and was told by my allergist (Rudolf Kallenbach, MD) not to eat several foods daily, including wheat, and to only eat them once per week at most. I ignored this, and around 5 years later ended up with full blown celiac disease. I still wonder if I could have avoided celiac disease by following my doctor's orders. What do you think?

A: If you are HLA DQ 2.5 and 8 homozygous or even heterozygous positive for one or both alleles you should have avoided wheat altogether. If you had avoided wheat and other gluten containing grains it is almost certain that you would have avoided developing celiac disease.

Q: My original RAST test results were very different from the ALCAT results. In brief, how does the RAST test compare with your ALCAT test, and which one is more accurate for food sensitivities or allergies?

A: The difference is that the RAST measures the levels of serum IgE antibodies and the ALCAT Test measures the response of an ex vivo (outside the body but analyzing live blood tissue) challenge with a food on the part of the innate immune cells. They are intended for different things. The RAST is quite a good guide for what is called, classical or Type 1 allergy; the ALCAT Test is excellent for determining non-IgE mediated allergy, or, sensitivity. These are different branches of the immune system and they present quite differently. IgE allergy produces rapid and pronounced symptoms, maybe even anaphylaxis say to peanut or crustacean. Food sensitivities maybe delayed for hour, even days, and symptoms are more chronic and less acute. The ALCAT Test, for example will tell you if you have a response to a naturally occurring food toxin (all plants produce toxins to protect from pests) and these can produce a wide range of symptoms that can effect any target organ or tissue in the body. Please see The Right Stuff: Use of Alcat Testing to Determine Dietary Factors Affecting Immune Balance, Health, and Longevity, as this paper explains the differences in greater detail.

Q: My results indicated that I have a moderate reaction to casein, as well as to egg yolk. The results don't differentiate between cow's milk, goat's milk, or sheep's milk, nor do they differentiate between chicken eggs or duck eggs (shortly after my celiac disease diagnosis I could not tolerate casein or chicken eggs, but could tolerate goat's and sheep's milk, as well as duck eggs). Can you explain why your test seems to not differentiate between these items?

A: The eggs that are tested in the ALCAT Test are chicken eggs. When following the results and avoiding reactive foods, we recommend not consuming any foods that were untested. Therefore, we would recommend the avoidance of duck eggs.

The proteins, casein and whey, are in goat’s, cow’s, and sheep’s milk, although the forms are somewhat different. The ALCAT Test tests one form of casein (which contains both A1 beta casein and some A2 beta casein) and when reactive will eliminate cow’s milk, goat’s milk, and sheep’s milk since they all contain casein. The ALCAT Test does test directly for the reactivity to cow’s milk, goat’s milk, and sheep’s milk as well.

Q: As mentioned, I have celiac disease, so I've been gluten-free for over 25 years now. My test results show that I don't have a reaction to gliadin, the part of wheat that is responsible for the autoimmune reaction seen in celiac disease, and a mild reaction to gluten. Can you explain why I seem to not react to gliadin, and why your test differentiates between gluten and gliadin reactions?

A: The ALCAT Test is testing the white blood cell response, not the antibodies to tissue transglutaminase or deamidated gliadin peptide which would be the response indicating an active celiac process, as you know. When individuals react to gluten and/or gliadin in the ALCAT Test, a sensitivity to the gluten and/or gliadin, not celiac disease, is indicated. When individuals with celiac disease do not react to gluten/gliadin in the ALCAT Test, this does not mean it can be safely consumed.

Q: Two items that I was surprised to see in my "Moderate" reaction list were white and brown rice, which have been daily staples and are in many gluten-free foods that I eat. I've never noticed any issues when I eat rice. Likewise, apples are in my "Severe" list, but I don't eat them often. Can you explain why some foods that I seem to have severe or moderate reactions to don't have noticeable effects after I eat them?

A: Keep in mind that the white blood cell reactivity (change in number and size) the ALCAT Test identifies, is an inflammatory response. (see scientific dossier attached page 4) Inflammation is the contributing factor to the most common chronic health problems we experience in the US. We don’t always feel inflammation but it is happening whether we feel it or not. IF symptoms are noticed from sensitivities, they can be noticed ~2-3 hours after ingesting the offending food or the next day or even 4 days later. (unlike the allergy response symptoms which would be noticed minutes after ingesting the offender up to 2 hours later).

Q: My experience so far, after being only a week and a half into my dietary changes, are that the ALCAT test results can be overwhelming. They can cause many people to have to make huge dietary changes, and have to spend a lot of time shopping, planning and preparing each meal. Is this feeling pretty common among those who get your test results, and do you have any advice for me?

A: Feeling overwhelmed is very common when seeing the results. That’s why we do what we do in PreviMedica- every test comes with ½ hour complimentary review of the results to explain how to implement the results. More in depth nutrition therapy and individualization is offered when patients choose to work with us in PreviMedica Nutrition for individual nutrition sessions or monthly memberships. We also provide customized meal planning tools and Sensitivity Friendly Menus for patients.

DISCLOSURE: For writing this article I received a complimentary "474 Items Previ Premium" ALCAT food sensitivity test panel from PreviMedica with a retail value of $1,115.00.

Celiac.com 04/07/2021 - It is not uncommon for people with celiac disease to have ongoing digestive symptoms and other systemic problems, even on a gluten free diet. Even though celiac disease is becoming better understood each year, much remains to be learned about the effects of the disease on the body and its ongoing symptoms. A recent study explains why digestive issues may linger for years, even after going gluten-free.

Not everyone with celiac disease who goes on a gluten-free diet will recover, according to the following study:

• "After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies)."

While this article is intended to address celiac-related issues that you may want to explore with your health care provider, it is not intended as medical advice. Please consult a physician for any medical advice related to celiac disease or any issues mentioned in this article.

Celiac Disease Follow Up Treatment

A number of follow up tests are recommended, both immediately after a celiac disease diagnosis, and on an ongoing basis, including:

Blood work for vitamin and mineral deficiencies

Micronutrient deficiencies are common in adults with celiac disease, as are vitamin and mineral deficiencies.

The most common vitamin and mineral deficiencies in celiac patients include the following vitamins and minerals: B vitamins (especially B12); Vitamin A; Vitamin D; Vitamin E; Vitamin K; Iron; Calcium; Carotene; Copper; Folic acid; Magnesium; Selenium; and Zinc.

Thyroid Screening

Because celiac disease is linked to autoimmune thyroid disease, thyroid screening is recommended for newly diagnosed celiac disease patients.  (Note: Patients on thyroid replacement and other medications may need frequent monitoring for dosage adjustment as their absorption improves.)

Bone Density Scan

Up to 75% of celiac patients have low bone mineral density. Because of this, bone density scans are recommended for newly diagnosed celiacs.

Liver Enzymes

Research from Stanford University School of Medicines Celiac Management Clinic is noting continued absorption problems with many individuals who are on a gluten free diet. A 72 hour quantitative fecal fat test and a 25-gram xylose sugar absorption test can help diagnose continued absorption problems.

Healing progress on the gluten-free diet may be monitored by re-testing whichever diagnostic blood test was initially highest, at an interval of 6 - 12 months. Children are likely to heal within a few months; adults may take a few years, and some may never totally heal.

Note: Calcium and Iron status will improve in most individuals, even without supplements, once the gut heals. Several doctors recommend NOT prescribing drugs such as Fosamax and Evista until after the intestine heals and more calcium is being absorbed from the diet.

Celiac Disease and Ongoing Symptoms After a Gluten-Free Diet

Most individuals will experience a significant decrease of symptoms within a few weeks or months of starting a gluten free diet. However, some individuals may continue to experience significant digestive problems or may have a relapse of symptoms. Some possible explanations are summarized below:

Hidden Gluten Exposure

New research shows that most people with celiac disease are regularly exposed to gluten, even when they are trying to be careful. Moreover, for most celiacs, gluten exposure is usually ongoing and silent. This article explores how much gluten exposure do celiacs get on a gluten-free diet. Moreover, celiac patients are really bad at judging gluten-exposure based on symptoms.

Look for any possible sources of gluten exposure. Consider binders in medication, cross contamination, misunderstanding of the strictness required of the diet, etc. Repeat blood tests might give an indication of continued gluten exposure; however these may not be sensitive enough to note low level exposure. Many celiacs report positive results after taking AN-PEP enzymes (GliadinX is a brand that we've reviewed) before meals whenever they eat outside their homes. These enzymes have been shown in multiple studies to effectively break down small amounts of gluten in the stomach, before it reaches your intestines.

Autoimmune Gastritis

This study demonstrates that autoimmune gastritis affects roughly one in ten people with celiac disease. Those with moderate intestinal changes (Marsh type 2) and without typical celiac antibodies appear to be at the greatest risk. Because both conditions can cause nutrient deficiencies and anemia, identifying and treating autoimmune gastritis in celiac patients is essential for long-term health.

Lactose Intolerance

Enzymes needed to digest lactose are manufactured by the intestinal villi, which, in celiacs, are damaged by exposure to gluten. Many people with celiac disease suffer intolerance to casein, a protein found in dairy products. Often, this intolerance subsides as the gut heals. Lactose intolerance is a common misdiagnosis in celiac patients, because the mucosal damage from gluten leaves them unable to digest lactose-containing products.

Testing for lactose intolerance can be done with a hydrogen breath test, Lactose H2. Suggested treatment includes using an over-the-counter lactose enzyme when ingesting dairy products. Re-colonizing the small intestine with probiotic bacteria (see probiotics below) is also helpful. How is lactose intolerance related to celiac disease?

FODMAPS

FODMAPs is an acronym, short for “fermentable, oligosaccharides, disaccharides, monosaccharides and polyols.” FODMAPs is a single name for a bunch of different molecules, common in many in foods, that are poorly absorbed by some people. People who can’t tolerate FODMAPs can suffer celiac-like gastrointestinal symptoms. A low FODMAP diet has been shown to help reduce symptoms of IBS, and could be helpful to some people with celiac disease. FODMAPs have also been shown to play a role in non-celiac gluten sensitivity (NCGS). Now, a new app can help people zero in on FODMAPs in food. Related articles include: Can Low FODMAP Diet App Help Some Celiac and IBS Patients?; What's the Deal with FODMAPs and Gluten-sensitivity in IBS?; and FODMAPs, Food Intolerance and You.

Oxalate Sensitivity

Oxalate sensitivity can lead to inflammation in certain individuals due to the body's inability to properly metabolize oxalates, which are naturally occurring compounds found in many foods. When these oxalates accumulate in the body, they can form crystals that deposit in tissues, leading to inflammation and pain. This condition, often linked to disorders like kidney stones, can exacerbate inflammatory responses in the gut, joints, and other tissues, particularly in those with compromised gut health or certain genetic predispositions. The inflammatory response triggered by oxalate crystals can contribute to symptoms such as joint pain, digestive issues, and even chronic fatigue, making it crucial for sensitive individuals to manage their oxalate intake.

Lectin Sensitivity

Lectin sensitivity can cause inflammation in some individuals due to the body's adverse reaction to lectins, which are proteins found in various plant foods such as beans, legumes, and grains. Lectins can bind to carbohydrate molecules on the surfaces of cells, including those in the gut lining, potentially disrupting the gut barrier and leading to increased intestinal permeability, also known as "leaky gut." This disruption can trigger an immune response, resulting in inflammation and contributing to symptoms such as digestive issues, joint pain, and fatigue. In sensitive individuals, reducing or avoiding high-lectin foods may help alleviate these inflammatory responses and improve overall health

Helicobacter Pylori

A study by Villanacci, et. al, published 8/28/2006 in the American Journal of Gastroenterology noted that 44% of individuals diagnosed with celiac disease tested positive for helicobacter pylori at the time of, or within 1 year of their celiac disease diagnosis. Interestingly, patients with helicobacter pylori colonization have a decreased risk of celiac disease. An Iranian study showed a connection between helicobacter pylori and celiac disease.

Small Bowel Bacterial Overgrowth

In a report published in the American Journal of Gastroenterology, Vol. 98, No. 4, 2003 of 15 persons with continuing symptoms, 10 showed evidence of overgrowth of bacteria within the small bowel. Testing included Lactulose H2 breath testing. Suggested treatment includes the non-systemic, prescription antibiotic, Rifaximin (800 mg. per day for one week). Note that the antibiotic used is called Rifaximin in England and Xifaxam in the U.S. Digestive function should also be evaluated as the underlying cause of SBBO. For more information, check these related articles:  Breath Tests for the Non-invasive Diagnosis of Small Intestinal Bacterial Overgrowth: A Systematic Review With Meta-analysis, and Rosacea and Small Intestinal Bacterial Overgrowth (SIBO).

Yeast Overgrowth

Some individuals report continuing symptoms due to overgrowth of yeast. Testing includes blood antibody testing for Candida. Suggested treatment includes ½ tsp Nystatin powder (mix with water), twice a day and 200 mg Ketoconizole once per day for 2-3 months. Monthly liver function testing during treatment is recommended. Nystatin powder may be ordered, by prescription, through pharmacies which offer custom compounding of medications. Digestive function should also be evaluated as the underlying cause of yeast overgrowth. Dietary changes may also be considered.

Other Food Sensitivities

Additional IgG food sensitivities may be seen. An IgG sensitivity is different from the IgE allergies most allergy doctors check for. Common food sensitivities include dairy casein, corn, soy and eggs. Treatment includes avoiding the food, and food rotation. There are some reports of a reduction of food sensitivities when digestive function improves. 

To begin an elimination diet, it makes sense to start with the top most common food allergens, as identified by regulatory agencies like the FDA (U.S. Food and Drug Administration) and health organizations like the CDC (Centers for Disease Control and Prevention), and eliminate them one at a time for 2-3 weeks, then add the item back and record any symptoms or issues you might have. It might make sense to start this process in this order:

1. Milk
2. Eggs
3. Peanuts
4. Tree nuts (such as almonds, cashews, walnuts)
5. Soy
6. Fish
7. Shellfish (such as shrimp, crab, lobster)
8. Sesame seeds
9. Mustard

Dr. Fasano has created a diet for those with celiac disease which seems to help most celiacs improve quickly. The Autoimmune Protocol Diet is even more strict than the Fasano Diet, and some people may need to go on this diet to fully recover. Lately, there's also been focus on FODMAPS (See below). A low FODMAP diet has been shown to help reduce symptoms of IBS. This older article also has some interesting ideas.

Cross-Reactivities for Celiac Patients

A recent study indicates that Silicon Dioxide (Food additive E551) May Trigger Intestinal Damage and Inflammation in People with Celiac Disease or Gluten Sensitivity. Cross-reactivity between anti-gliadin antibodies and certain spice proteins indicates that patients with celiac disease or wheat allergies may also have an intolerance to many spices, even if they are gluten-free. Some spices can also be a source of cross-contamination, as wheat flour may be used as an anti-caking agent. This article explores this topic in more detail:

• Beyond Gluten: Exploring Lesser-Known Triggers and Cross-Reactivities for Celiac Patients

Artificial Sweeteners

Most artificial sweeteners and sugar alcohols are technically gluten-free, they can still trigger digestive symptoms in people with celiac disease or gluten sensitivity, including bloating, gas, and diarrhea. It emphasizes that gluten risk usually comes not from the sweeteners themselves but from cross-contact or other ingredients in processed foods, and encourages careful label reading and choosing certified gluten-free products. The sweeteners discussed include advantame, acesulfame potassium (Ace-K), aspartame, cyclamate, erythritol, hydrogenated starch hydrolysates (HSH), isomalt, lactitol, maltitol, mannitol, neotame, saccharin, sorbitol, stevia, sucralose, and xylitol, with the article noting that individual tolerance varies and that some sweeteners may also affect gut bacteria or cardiovascular health, making moderation and symptom awareness especially important for those managing a gluten-free diet.

Digestive Function

Multiple problems with digestive function may be found. A complete evaluation should be done. One source for a comprehensive stool analysis may be obtained, by mail and by prescription.

Intestinal Motility

Increased intestinal motility may contribute to continuing diarrhea. Try reducing motility by using a fiber supplement like Benefiber or Citracel. Particularly in individuals who have had their gall bladder removed, consider Cholestid, a prescription drug used for lowering cholesterol, which may also slow motility. It acts by binding to irritating bile salts.

Decreased Stomach Acid

Low stomach acid (hypochlohydria) may interfere with the effectiveness of digestive enzymes, and promote yeast or bacterial overgrowth. A good source of information is the book "Why Stomach Acid is Good for You" by Wright & Lenard. For testing, using the Heidleberg Capsule or Gastrocap tests. Some celiacs with low stomach acid find benefits from taking supplemental Betaine HCl, bitters, digestive enzymes and probiotics, available at a health food store. Related articles include: Reduced Fecal Acidity Mirrors Rise in Celiac Rates.

Beneficial Bacteria

Probiotics are very helpful for regaining the balance of the intestinal flora. Use products that have multiple types of bacteria. Those found in the refrigerated section of health food stores will have the highest level of bacteria. Kefir, raw kimchee and raw sauerkraut, also found in the refrigerated section, have high levels of active cultures. Related articles include: Celiac Disease Onset Changes Gut Microbiota in Children; What Can Gut Microbiomes Teach Us About Gastrointestinal Distress in Children?; and Gut Microbiota Reflects Disease Severity in COVID-19 Patients.

Digestive Enzymes

Pancreatic enzymes assist with more complete digestion, discouraging unhealthy bacterial growth. Many people with celiac disease prefer vegetable based enzymes. which may be purchased online, or at health food stores. Animal derived enzymes are available by prescription. Experiment to see what works best. To prevent heartburn, start by sprinkling ½ of a capsule on food, and increase as needed and tolerated. Be sure to make sure your enzymes are gluten-free. Watch out for Maltase, which can often be made from barley. Related articles include: Are Gluten-Busting Enzymes the Best Hope for Future Celiac Treatment and Maintenance?; Could Enzymes from Oral Bacteria Treat Celiac Disease?; Researchers Review Potential of Gluten Degrading Enzymes for Treatment of Celiac Disease; and Imagine a Gluten-Busting Enzyme that Worked Like LactAid.

Carbohydrate Intolerance

Some individuals do not digest carbohydrates and sugars well. The undigested carbohydrates encourage the growth of harmful yeasts and bacteria. More information on a diet low in carbohydrates may be found in the book "Breaking the Vicious Cycle" by Gottschall, who recommends eliminating all complex carbohydrates to kill off "bad" bacteria.

Parasites and other Bacterial Problems

Check for parasites and other bacterial problems, including Giardia lamblia and Ascaris lumbricoides. Just because an individual has celiac disease, doesn't mean they cant have the bugs that a normal person with diarrhea may have!

Other Autoimmune Diseases

A number of autoimmune conditions are associated with celiac disease. At least one in three people diagnosed with adult celiac disease will also have another autoimmune disease. Many report a significant improvement in their other autoimmune disease after beginning a gluten free diet. However, some individuals with celiac disease may develop other autoimmune diseases even after beginning a gluten free diet. Watch for Type 1 diabetes, liver, thyroid, pancreas and adrenal diseases, peripheral and central nervous system damage, connective tissue and other rheumatoid inflammations. Related articles include: Celiac Disease is Linked to Autoimmune Thyroid Disease; and The Ten Risk Factors Most Associated with Celiac Disease.

Article originally published 03/25/2007, updated 04/07/2021.

Celiac.com 04/02/2021 - On a gluten-free outing with nursing students, they presented an array of snacks that were listed as "gluten-free". After careful review and sampling, we came to the conclusion that fancy packaging costs more than the product inside! That means sampling is costly so healthy meals are better for a healthy bank account. Here is a summation of the gluten-free snacks sampled (GF labels mean it contains less than 20 ppm gluten).

Organic Crunchy Rice Rollers = various flavors and all the GF ingredients you could want BUT they were so dry that extra liquid was needed to eat just 1/2 roll.

Banana Vital " Simply Bananas" and "Simply Bananas + Guava" tasted good and was a good source of potassium, folate and magnesium for 90 calories and 17 grams sugar.

Real Fruit Yo Yo Mango 100% fruit rolls labeled " absolutely nothing else" were a blend of apples, pears, and mango rolled into 2 chewy fruit swirls at 8 grams sugar, 60 calories.

In the same snack aisle were:
Keto Crisps 100% artisan cheese "from family farm cows that are ethically cared for by local farmers" which made us think that the package message was more important than ingredients, taste or cost. Ingredients were pastuerized milk, salt, microbial congulant cheese cultures but I could not determine if with the label was accurate  indicating 2 servings because they disappeared so fast . 7 crisps = 160 calories.

Skinny Jimmy "clean protein bars" in chocolate peanut butter and "wake & focus" cookies 'N cream. The "wake & focus" bars featured guarana as a caffeine source + omega 3 fatty acids and MCT oil. The 21 g "clean protein" bar consisted of  soy protein isolate and pea protein GF cookies which is a highly processed protein source. These snacks led to a discussion of what other ingredients in processed foods should people with celiac disease and gluten-sensitivity need to consider.

Maltodextrin is a thickener produced from corn, rice, wheat or potato starch for use in shakes, sugar-free sweeteners and diet products. It has been shown to increase blood glucose and suppresses antimicrobial defenses in the gut.

Guar Gum is from guar beans in India and Pakistan. It is called galactomannan on labels and is used widely throughout the food industry - ice cream, yogurt, sauces, kefir, almond milk, coconut milk. As a thickener and stabilizer, it is used as a binding agent in making tablets as well as a thickener in lotions and creams. Guar can cause increased abdominal discomfort and gas.

Lectins are another carbohydrate binding protein that promotes inflammation in the gut. Foods that commonly contain toxic lectins are: pea family (peanuts, pigeon peas, soybeams, kidney beans, mung beans, lima beans, lentils, chick peas, carob, green and yellow peas). Green beans and snow peas can be tolerated since they are immature proteins with minor amounts of lectins. Grains are seeds from grasses- barley, oats, kamut, spelt, teff, wheat, millet, rye- all have detrimental effects of lectins and are a factor in the development of celiac disease or gluten sensitivity. 

Celiac.com 03/25/2021 - Sometimes, studies can surface that create the appearance of a monumental revelation, but in reality, there isn't much to support their claims. The latest example is an article based on a recent study that appears in Foods magazine. 

Wheat farmers are using increasing amounts of nitrogen on their fields, which may be stoking the global increase in cases of celiac disease, according to a study published in the Foods magazine, and led by Josep Peñuelas, a researcher at CREAF and the CSIC.

The study makes some sweeping conclusions that will likely raise some eyebrows. But at the end of the day, it's long on generalizations and thin on data, and facts.

Beginning with little perspective on historical versus modern usage levels, or actual physical impacts, Peñuelas points out that wheat farmers today use ten times more nitrogen to fertilize wheat crops than in the 1960s.

Peñuelas points out that celiac rates in the US went from 0.2 to 1% over the last 25 years. However, there are likely many reasons for this, and ascribing the cause to increased nitrogen use seems far fetched. Even ascribing the cause to increased wheat consumption seems a stretch. Because celiac disease testing and awareness have increased substantially over the last couple of decades, it's difficult to get a handle on exactly how widespread the problem is, though evidence points to new rates outpacing increases from testing alone.

He then makes some sweeping conclusions. "Nitrogen fertilization translates into a possible direct global health problem," says Peñuelas, although he is cautious about drawing conclusions and admits that very little study has been done in this area.

Peñuelas admits that his team did not "carry out the medical study, but we warn of a new consequence. The relationship that we have identified does not imply the existence of a single direct cause: there may be other factors, although this is important."

He adds that "the nitrogen fertilization that we ecologists study has very relevant effects on microorganisms and the functioning of the earth, and we add that it also has an effect on human health." 

This may be true, but the fact is that the actual chemical, biological and environmental triggers that cause the development of celiac disease in genetically susceptible people remain largely unknown. As do the causes of the genetic propensity for celiac disease. 

Moreover, the level of genetic susceptibility in the general population remains largely unknown, especially relative to previous eras.

Overall, the study, while perhaps well intended, seems thin on detail and long on generalizations and claims that are not based on data and solid science.

Peñuelas makes a lot of general claims about nitrogen use on wheat fields, increased planting and consumption of wheat, and rises in celiac disease to make some equally general claim that rising nitrogen use has something to do with it all, and possibly other problems.

He states: "Everything suggests that we have another risk factor caused by a world richer in nitrogen through the increase of gliadins in wheat, an important risk factor that may explain, at least in part, the increase in the prevalence of celiac disease."

"Everything" suggests? Really? Surely if "everything" points to wheat as "another risk factor caused by a world richer in nitrogen through the increase of gliadins in wheat," then surely there's good data to support that claim? But the study offers none. How about let's see some data from an actual scientific study that does more than make some blanket associations about wheat and nitrogen and celiac disease?

With all respect to Peñuelas and Foods magazine, these types of claims are unsupported by any hard data, and questionable in their conclusions. 

Here are some questions that go unanswered: Are wheat farmers dumping more fertilizer on their crops than ever before, or has wheat cultivation expanded ten times in the last 50 years or so? Is there any hard evidence that elevated nitrogen use impacts the physical qualities of wheat, especially the gliadins that trigger celiac reactions? Are there other plausible explanations for a rise in celiac disease rates, such as NSAID use, or dietary shifts?

The data so far discounts the idea that wheat, even hybridized varieties common today, are really that much different, or more likely to trigger celiac disease or gluten intolerance than in the past. 

The reason it's important to clarify such studies is because they can promote misinformation about topics that really matter.

Modern wheat is not more toxic than historical varieties
This claim is similar to claims that modern wheat is more "toxic" to people with celiac disease than historical varieties, or more likely to trigger the development of celiac disease, neither of which have been shown to be true. In fact, a recent study suggests no connection between celiac antigenicity and modern wheat strains.

In fact, both ancient and modern wheat strains trigger reactions in people with celiac disease, and may contribute to its development.

Rain levels change gliadin levels more than hybridization
Sometimes actual data can yield surprising results. Not too long ago, anew study on old and new wheat varieties shows no evidence for higher immunoreactivity in hybridized wheat strains. In fact, they found that rain changes immunoreactivity of wheat proteins even more than breeding. Think about that: Rain levels change gliadin levels much more than selective breeding. 

In general, be skeptical of simple answers to complex problems, especially without good detail in the form of data. Demanding good science, solid data, and supportable conclusions will help people avoid reaching the wrong conclusions about important issues.

Celiac.com 03/05/2021 - In 2003, I was on a business trip in New Hampshire when my skin blossomed into an itchy, burning rash. During the daylong meeting, I felt it spreading under my clothes. I delivered a presentation to 20 people, while wondering what was happening to me. After the presentation, I went to the bathroom and open my blouse. One look at my reflection in the mirror, and I fainted.

At the emergency room, I was confronted with seven different doctors, one at a time, who ask me if I have taken illicit or pharmaceutical drugs, or been exposed to fertilizer or dioxin. They told me that I was having a systemic chemical reaction. They prescribed steroids and antihistamines. They said the rash exposes my body to bacteria and instructed me to buy a thick sweat suit to wear on the plane ride home. The rash itched unbearably for ten days and took six weeks to heal. This was the first of many full-body rashes that erupted unexpectedly over the next few years.

Back home, I searched Google, study journal articles. I visited specialists who did colonoscopies, endoscopies, barium enemas, and x-rays. They prescribed histamine blockers and antihistamines. I went to dermatologists who performed skin-prick allergy tests and biopsies, prescribed more drugs and steroid creams. None of the doctors could diagnose the cause of the rash. Meanwhile, the shame around my rash caused me to become antisocial. I hid at home, mostly, but when I did venture out, I wore long sleeves, pants, and gloves to hide my skin even in the heat of summer. My hands were the worst. They swelled with inflammation and itchy sores. One summer afternoon on the light rail, I was too hot to wear gloves. A woman sat across from me, took one look at my hands, and found another seat. 

The intensity of the skin affliction is an extension of my childhood malaise. I grew up with up with chronic stomachaches and bloating. I thought it was normal to feel sick after eating. Tests revealed that my intestines were anatomically correct albeit twisted, and I was told again and again there is “nothing wrong” with me. I ate a healthy and wholesome diet, following the nutritional advice of the day. Plus, restrictive diets were part of my family’s culture. My mother was always counting calories or on a diet, and after my father had a heart attack, the whole family followed his restrictive heart-healthy regimen. 

After suffering a series of painful and humiliating rash cycles between 2003 and 2005, my husband found a doctor who promised to find the cause. I endured more scopes down the esophagus and up the rectum orifice, ninety-eight needle sticks on my back, and twenty-six bubble-tests on my forearms. Still, no diagnosis. Finally, after a lifetime of stomach issues, years of painful rashes, and three months of exhaustive testing, the doctor concluded that I was reacting to gluten. My symptoms were conducive to “a rare form of celiac disease called dermatitis herpetiformis,” he said. 

The first rule of war according to Sun Tzu: “Know your enemy.” Learning that a protein called gluten was wreaking havoc on my body, I was determined to fight it with dietary changes. Gluten wasn’t part of the lexicon at the time and the so-called “gluten craze” was years away. I was left to research on my own. On the Internet, I read, “gluten is a protein found in barley, rye, oats, wheat, and spelt.” Think of the acronym BROWS. But that is just where gluten ubiquity begins. I learned the scores of synonyms for gluten, so I could parse labels on foods, cosmetics, and pharmaceuticals. I discovered that virtually every food I consumed contains hidden gluten. Even with this knowledge, I’d be rash-free for a while, only to have another devastating surprise outbreak. This lasted several years after diagnosis, in spite of vigilantly controlling my diet. 

Over the years, the rashes have become fewer, as I learned the constraints of my condition. If someone had told me how vigilant I’d have to become, I would have said, “Are you kidding me?” Every bite of food I don’t carefully scrutinize puts me at risk; even the tiniest infraction causes a reaction. I have zero resistance. Explaining my food idiosyncrasies to others is a challenge. My family members support me, though I’ve been accused of “trying to get attention,” and my childhood stomach issues have never been fully acknowledged. I trust almost no one to cook for me. Too many times I have believed loved ones who said that a food is “Jean friendly,” only to be sickened and suffer another rash-cycle. Social politeness isn’t worth the damaging physical ramifications. Food is subsistence for me, now. I limit my diet to the few foods I know will not make me sick. With these strategies, I have learned how to live and thrive with celiac disease, but it has been a long and painful journey, because not eating gluten subjugates me from many social situations. 

A Social Disease

After living with the disease for over ten years, speaking around the country and talking to folks with it too, I realized that the important thing about having celiac disease isn’t answering the ever-important question “what’s for dinner,” but rather, how do I gracefully navigate social scenarios with people I love without alienating them, or compromising my health? I realize that celiac disease and food sensitivities are a social disease (Bacigalupee & Plocha, 2015). We live in a world that revolves around eating gluten-containing foods such as cake to celebrate an achievement, Holy Communion to unite with Christ, or breaking bread at a meal to signify friendships. Those that cannot eat gluten are cut off from these rituals, causing feelings of isolation and seclusion. Constant ridicule of gluten and gluten-avoiders in the media only add to these feelings of alienation. To understand how this affects people in their familial and friend relationships, I surveyed over 600 people and interviewed nearly 70 people nationwide who live with celiac disease or other food sensitivities, asking them to convey their recollected stories.

Contentious and sometimes compassionate social interactions take place in what I am calling “vexing venues” such as the home and dinner table, holiday and extended family meals, church, restaurants, the doctor’s office, school, and even the bedroom. Since food appears in virtually every social encounter in life, those with food sensitivities or celiac disease find themselves confronting social norms every day. The attitude of those around us, coupled with our fortitude and self-confidence, or lack thereof affects how we manage these social situations. Sometimes things go well, and we can avoid confrontation and blend into a situation; other times, we are left without anything safe to eat, and people around us who simply do not understand. Positive and negative interactions described by study participants instill a need for a work such as this one to create new levels of awareness, and to be a catalyst for change in the way gluten-centric rituals are viewed. This happens on the individual level first. As described in “The Diagnosis,” and as reported by so many of my study participants, the process required to figure out what is safe to consume is scary, especially when we may react severely to even the smallest amount. But after we figure that out, we have to decide how best to communicate our needs, and live with them in everyday life. It ain’t easy!

“None of us are going to follow that diet!”

I recently met a woman in the pet shop as I scanned the shelves for gluten free options for my two kitties. The woman noticed I was reading the labels and asked me what I was looking for. I said, “Gluten free cat food, if you can believe it! I can’t clean vomit from the kitties if it contains gluten, so I need to find alternatives.” She then asked me if I had celiac disease. I said, “yes” and she told me about her niece. Her niece had been diagnosed with celiac disease a year ago, but her family did not understand anything about it. The girl was afraid to eat anything, withering away and getting very thin. I asked her if the other family members continued to eat gluten in the household. The lady replied, “Well, yes, of course. None of us are going to follow that diet!” I said, “Does your niece react when she consumes it?” The lady said, “Well, she has lots of physical problems, and she is a very picky eater, but we don’t know what’s ‘in her head’ versus what is real.” Then she described how the family (and she) felt like the girl overreacted, so they forced her to go to a rehabilitation clinic where she was diagnosed with anorexia nervosa. She is now back home, and struggling. This poor girl needs help to understand what she can safely eat, but clearly her biggest issue is negotiating with her family to come to terms about how to keep herself safe while living in that household. The lady described a huge amount of resistance from the girl’s family members, and a lack of compassion or understanding. Until those attitudes are changed—both by the girl and her family—she will not thrive. Why are the family members acting this way toward the girl? It’s because they are entrenched in their beliefs, and the girl’s needs are so far from what they hold as “true,” they cannot comprehend her needs. Also, the family is using “groupthink,” where they reinforce each other’s opinions while inadvertently hurting the girl (Janis, 1972). Though celiac disease and anorexia are serious, ultimately, the family’s firmly held “truths” are the root of that girl’s problems.

Once diagnosed with a disease such as celiac disease (and being diagnosed is a feat in itself), the person goes through a process where they realize that long held “truths” about what they can or cannot eat, and how they participate in social situations is completely different than what it was before. Cultivating new “truths” takes time, experimentation, trials, and errors. It means trying out one social tactic or another to see how best to co-exist. It requires strength and courage by the person with celiac disease or food sensitivities, and ideally cooperation and compassion from family and friends. This process is necessary in order for the person with food sensitivities or celiac disease and their close loved ones to adjust. As medical diagnosis processes improve, gluten intolerance is known now to affect many.

Gluten Awareness

Roughly 95 million Americans—one in every three people—react negatively to gluten (Fine, 2003). Yet, “going gluten free” is considered a fad, ridiculed in contemporary culture, denigrated by culinary luminaries, and even refuted by the Pope! Since being diagnosed with celiac disease in 2005, I have been vaguely aware of the societal pressures that put me at odds with friends and family in virtually every social setting where I disclosed my intention to maintain a gluten-free diet. I wonder, why do I feel this way? Why was this happening so consistently in my life? And, was I alone in this experience?

Celiac disease affects one in every 100 people in the United States (celiac.org). Despite these high incidence rates, American physicians often erroneously perceive it as a rarity (Fasano et al., 2003). While three million Americans have celiac disease (Fasano, Sapone, Zevallos, & Schuppan, 2015), another three million have non-celiac gluten sensitivity, which is also an autoimmune response to gluten (Uhde, et al., 2016). And one-third of Americans likely have gluten sensitivities, defined as illness from eating gluten that is not detected in current serological tests (Fasano, et al., 2015; Fine, 2003). The lack of diagnostic testing and awareness leaves many others with non-celiac gluten sensitivity and food sensitivities unaware of the correlation between their symptoms and consumption of gluten-containing foods (Wangen, 2009). Most adults are diagnosed at age fifty or older (Goddard & Gillett, 2006), and non-diagnosis of celiac disease can result in lymphoma (Green & Jabri, 2003). Non-celiac gluten sensitivity affects at least the same amount of people as celiac disease but there are no medical markers to confirm diagnosis at present; however, other autoimmune indicators are positive with the consumption of gluten in tests (Uhde et al., 2016), suggesting that celiac disease is not the only disease correlated with gluten. Pharmaceuticals exist to address symptoms of intestinal discomfort and other physical manifestations, but there is no medical cure for celiac disease or non-celiac gluten sensitivity (though hope on the horizon is discussed in chapter ten). Those with DH can take the drug Dapsone to alleviate the symptoms, but it has serious side effects. Currently, the only treatment option for those with celiac disease is a strict gluten-free diet for life (Fasano & Catssi, 2012). 

Symptoms of celiac disease and non-celiac gluten sensitivity affect the intestine, including “gas, bloating, diarrhea, nausea, vomiting, fat in the stool, nutrient mal-absorption, and constipation” (Fine, 2003, p. 1), and may manifest as autoimmune issues affecting the entire body, including “dermatitis herpetiformis (itchy rash), diabetes, chronic liver disease, multiple sclerosis, lupus, and osteoporosis” (Fine, 2003, p. 8). Most people don’t correlate what they eat with these physical responses, and reach for an antacid rather than adjusting their diet. Americans spend over two billion dollars a year on antacids (Statista, 2016) when simple alterations in the diet may alleviate symptoms. Some people with celiac disease are asymptomatic. They are the lucky ones who can go to a restaurant and order the featured gluten-free meal and won’t know whether the food was cross-contaminated because they don’t react. This is risky too, because they may be building up antibodies and not know it, and to be honest, their ability to take risks makes those who can’t take risks look overly cautious. Despite it’s commonness, most people don’t know much about gluten sensitivity. Nevertheless, being diagnosed with celiac disease or food sensitivities means having to rethink everything – how we eat, what we eat, where we eat, whom we eat with, and how at-risk we really are. We have to learn for ourselves whether we are asymptomatic, or highly symptomatic. It’s a process of relearning and unlearning, as we navigate our new “truths.” 

A Rift with Truth

Changing a “truth” often creates dissonance for everyone involved. I find it fascinating to associate how deeply held “truths” affect relationships, and when these “truths” are disrupted (such as with a diagnosis that disallows a food found in virtually every bite of “normal fare”) relationships are impacted. What causes this rift with constantly held truths? What factors cause us to form these “given truths?” To answer this, it makes sense to start with defining ideology. Ideology is the kind of word that if you asked nine people what it means, you’ll get nine different answers. (Incidentally, I’ve done this!) Ideologies are common-sense taken-for-granted expressions that influence what is considered “truth” in a given community. There it is – the simple explanation of what “ideology” is—a taken-for-granted truth. Each ideology is informed by a system of ideas that support prevailing social practices and beliefs that are considered natural or normal. However, what is natural and normal for one set of people may not be for others. Consider the global warming controversy. Some consider it “true” that there is no global warming, while others consider it “true” that there is global warming. Those are two ideologies that come with a whole set of sub-beliefs. Convincing someone to change their “given truths” is challenging, and requires compelling evidence. And there is another aspect of ideology – we may know there is global warming, but decide to ignore it, treating it with willful ignorance, because as Al Gore points out, it is a very inconvenient truth. It is no fun to alter our fast-paced, technologically driven lifestyles to accommodate the planet’s needs. It is easier to rationalize making a larger carbon footprint when we have the chance to travel across the world for a tropical vacation, or drive rather than use public transportation. Similarly, it is complex to alter a person’s diet to completely omit gluten. It is far easier to conform to norms than to insist on eating different foods than everyone else eats. 

Ideologies are determined by cultural influences such as religious beliefs, etiquette practices, media perspectives, political views, “scientific” evidence (put in quotes, because outcomes can be manipulated for biases), and the cultivation of “truth” through storytelling. Storytelling is how we determine who we are, and what we believe. Our “story” is influenced by our experiences, what we see, read, hear, etc. as well as what those around us see, read, and believe. Collectively, we form what we consider “truths” or ideologies. For the purpose of this book, “given truths” and “ideology” are the same, but they vary from person to person, and culture to culture. We live with our taken for granted “truths” very comfortably, thank you very much, until they are rocked with a new “truth” that has to be evaluated and incorporated. A perfect example of this is when a person is diagnosed with celiac disease and has to avoid every molecule of gluten in order to thrive in life. Everyone else has to alter his or her “truths” to accommodate this new “truth.” Often people don’t want to alter their comfortable “truth,” causing resistance. Sometimes the notion of a severely restrictive diet is so farfetched, people “refuse to believe it” causing head butting and strife.

I recently “butted” against an ideology with my housekeeper, who had been with me for years. I thought she understood my gluten sensitivities, because she has been in my life as I wrote cookbooks and renovated my house to make it safe and gluten free. One day she arrived at my door munching from a cylinder of crackers. I said, “Oh, I’m sorry, but you can’t eat those in here. Before you come in, you’ll need to wash your hands. Please wait there and I’ll get you a damp towel.” All ended well, it seemed. But then months later, I found her eating chocolate chip cookies in my gluten-free kitchen. I said, more forcefully, “You can’t eat those in here! Please put those in this plastic bag, and let’s try to clean off whatever you have touched.” To my surprise she responded, “You have insulted my food again! You did it before when I was eating crackers. I’m hungry and need to eat. I’ll eat whatever I want whenever I want to.” When this happened, I didn’t say to myself, “Oh we are operating from different ideologies.” Nope, after she rejected the gluten-free food I offered instead of her cookies, I just got really mad and fired her. In fact, I fumed about it when I had to clean up (and had a reaction as a result). I still fume every week when I clean my house myself now. 

But when I think about it, I realize that she was operating from a different set of “truths.” Her “truth” was that she was working hard and was entitled to eat when she was hungry. The idea of a food allergy or intolerance was alien to her. Somehow she missed noticing the years I was sick when she came to clean before I was diagnosed, or the other years I worked from home writing cookbooks. Though I thought I had explained it to her many times, I think the idea of being “allergic” to any food was a concept she simply didn’t understand. From my ideological perspective, after forsaking nearly every food I used to dearly love, eating an extremely restrictive diet, and living this lifestyle, I was absolutely confronted with her attitude and lack of respect or compassion for my plight. We were operating from two polarized ideologies. I am sure she felt as “right” with her beliefs as I did with mine. Both of us were reinforced by prevailing “truths” we elected to hold as our own.

Members of the dominant group reinforce their own values and tend not to question their ideological beliefs. When individuals outside of the dominant group question the ideology, they are often subjected to scrutiny, judgment, and disciplining tactics, as the dominant group seeks to protect existing ideology. Major life changes, like illness, can displace a person’s position from the dominant group to an outsider group. For example, when given news of a life-altering illness requiring drastic dietary alterations, a person may reexamine firmly held truths around food and health. Ideological truths that once represented simple proclamations to live by (such as give us each day our daily bread, for example), suddenly contradict reality. The ill person reexamines his or her ideologies around social and familial situations involving food, forced to defend them with everyone else who holds a different set of beliefs. 

The Power of Ideology 

Expanding the simple definition of ideology as taken-for-granted truth, let’s examine it from different perspectives. An ideology is described as a notion that drives behavior, but that behavior can be altered when a different belief takes hold (Burke, 1969). My housekeeper’s reaction depicted her deep-seated ideological belief that she was entitled to eat whatever, wherever, and whenever she wanted, and that allergies to food were unthinkable. Whereas, I felt like after all I had gone through to learn about my disease, and the sacrifices and expenses that I had endured to thrive, she was disrespecting and disrupting my ideologies (in the sacredness of my home). There was no intersection between what she believed and what I held fast. Unified, or common beliefs would have helped us to understand each other’s perspective. My housekeeper and I shared no “interconnected beliefs” on this topic (Black, 1970, p. 70) and because of that we reached a sudden impasse and parted ways. I truly regret this. She was with me for years. I wish we could have a heart-to-heart about this, where I could say my point of view and she could express hers. It would be wonderful for us to show each other compassion and understanding, but it hasn’t happened. She “dug in” with her truth, and I with mine.

Ideologies are seldom an individual’s original thought, but rather a thought driven by outside influencers (McLellan, 1986). Ideologies are common sense “truths” (McKerrow, 1989), and may be rooted in personal, self-serving interests (Eagleton, 1991). For example, a spouse who feels put upon by his/her partner’s gluten-free needs may repeat the ideological “truth,” a little won’t hurt you, in order to avoid the burden of extreme safety practices in the home kitchen. Operating under this ideology, the cook is excused from the tedium of reading every label to identify gluten-containing ingredients. The partner eating the food becomes a victim of this ideology when suffering the consequential reaction. I have a friend who continues to make gluten-containing foods in her kitchen even though her husband constantly complains of what she refers to as “his little rash.” He was diagnosed with dermatitis herpetiformus, a form of celiac disease that manifests on the skin a few years ago, but she refuses to believe he is as intolerant as the doctor told him he was. She thinks a little won’t hurt, and even though he has that “little rash” all the time, she continues to bake and eat gluten. He is a victim of her ideology.

Faced with the challenges of a gluten-free lifestyle, some couples forego eating together. Study respondent, William (#60) describes his sadness that he and his wife no longer share meals. She doubts his response to his disease, judging his restrictive dietary choices are far too extreme. He reports, “She goes out to eat most of the time, and I make safe food for myself at home.” His wife refuses to cook or consume gluten-free meals, preferring to eat at restaurants with her friends. William feels isolated and distanced from his wife because of his extreme sensitivity to gluten, unable to participate in her social events. However, he remains steadfast with his resolve to avoid cross-contamination to protect his health. 

Another respondent reports feeling mocked with his dietary choices. When eating his special gluten-free foods at the dinner table, Bert (#63) says, “My daughter rolls her eyes and looks at my wife. They both snicker.” The daughter and wife are showing reluctant tolerance and gluten-doubt ideologies to his dietary choices. These ideologies will be elaborated in Chapter 2. Both examples from William and Bert show how living under flawed ideologies can disrupt relationships. 

Ideologies are also enforced by the power of the elite class, including political, economic, and even military entities (McGee, 1980). The government perpetuates ideologies with dietary standards and corporations create physical ideals that sway the public through advertisements. Media influencers such as television shows targeting food sensitivities people, quotes from celebrities about the gluten-free diet, and mocking messages such as those the in satirical comics gathered in this text collectively influence the behaviors and ways of popular thinking. Utilizing the definition of ideology as a “shared representation of social groups,” ideologies evolve from cultural societal foundations such as the church, media outlets, weight-loss enterprises – from virtually every public venue (Van Dijk’s, 2006, p. 115). Stated differently, ideologies are mandates prescribed by a higher power such as religion, from an authority such as science, or from a powerful government or corporate entity. Ideology can comprise a constellation of beliefs that shape identities and realities (Mumby, 2015). Those whose actions repudiate established norms are punished, often with public ridicule.

Figure 1.1 – Gluten Sensitive (Licensed with permission from Comics Kingdom (Bizarro).)

Social commentary in the media often ridicules those who avoid gluten. Humor can be a harmful vehicle such as the comic in Figure 1.1. The woman is described to be overly sensitive, not to eating gluten, but having her feelings hurt when gluten is mentioned. Though admittedly funny, this is an example of how mockery can infiltrate the public’s opinion when someone request a safe, gluten-free meal, and how women are overly sensitive to diet. The satire comics presented throughout this book illustrate an ideological hostility to food sensitivities and celiac disease, by way of denigrating barbs that make light of the gluten-free diet, undermining the importance of it, and reinforcing negative and unkind behaviors toward those with celiac disease. Laughing at a gluten-mocking comic implies agreement with the underpinning ideology. Freud (1905, p. 60) points out that wit is a “weapon of attack” to make those being disparaged feel “inferior and powerless.” If we fall outside of the norm with our behavior or beliefs, we are often ridiculed until we fall back in line. The comics illustrate how mockery urges conformity. Those in the “powerful” (non-celiac disease) group see the comics and laugh, whereas even though those with food sensitivities or celiac disease find it humorous, we also may view it as a form of “oppression” and a worrisome jab. Comics reinforce the “groupthink” that happens in families causing anyone who falls out of line to become the ridiculed victim, ousted from the group. 

Humans coalesce in groups with common beliefs. “Man is by nature a political animal with an innate tendency to form into groups” (Aristotle). Groupthink is a process described originally by Janis (1972) where those empowered in a group share a common belief, whether it is true or not, and then put pressure on those who do not comply with those truths. Those not going along with the group’s ways of thinking are censored, ignored, or ultimately culled unless they comply. Those who share the group’s opinion are unified members of the group. Groupthink evolves through the process of familial storytelling where “truths” are formed and solidified, sometimes becoming self-censored, and self-serving (Janis, 1972). Ideologies are assimilated through conversation that conveys a story that intertwines cultural influences with long-held beliefs (Fisher, 1989). Narrators balance truth with motivations in a cohesive story with significant meaning (White, 1980) and seek reinforcement or agreement from outside culture, religion, and political influential forces (McAdams, Reynolds, Lewis, Patten, & Bowman, 2011). This story telling process to formulate “truths” is integral to family traditions, making meaning of shared life, “doing family” (Langellier & Peterson, 2018, p. 1), and teaching family values (Koenig Kellas & Kranstuber Horstman, 2015). It is in our initial home where we learn fundamentals for what and how to eat, how to cook, how to participate in food-related rituals), as well as gender roles and power structure biases around food (de Certeau, et al., 1998; Pecchoni, Overton, & Thompson, 2008). Groupthink is a way of encouraging belonging to the group or family and creates power structures of “us” and “them.”

Divorcing the Family

Originally published as an excerpt from this book on 02/13/2020 in The Journal of Gluten Sensitivity 

I made a rare visit to a cousin a year or so after I was diagnosed with celiac disease. As the youngest child in a large extended family, my cousin was closer to my mother’s age than mine. He took my mother and me on a beautiful ride around Kansas City. I sat in the back seat as they reminisced about their younger lives while passing the places where they experienced them. It came time for lunch and he wanted to take us to a favorite BBQ place in the heart of Independence, MO. I hesitated at his suggestion, and he said, “You aren’t one of those vegematerians, are you?” The coy word he used, and his tone suggested his disapproval of anything out of the ordinary. (In fact, at that time I was a gluten-free vegan!) I said, “I’ll find something.” During lunch, I picked at French fries, pretty sure they were cooked in a dedicated fryer. My mother and cousin exuberantly scarfed the BBQ. My cousin told us about another cousin I hadn’t seen in over 40 years that I apparently look like and reminded him of. He said, “Cousin Sandra is weird. She used to bring her own food to our family dinners.” 

He was referring to a time, fifty years ago. Back then, members of the extended family met at my grandmother’s house every Sunday to share their views on politics and happenings in the world. It was a close-knit family. Dinner consisted of the main dish (usually pressure cooked ham, green beans, onions, potatoes, bread, and cake for dessert) made by my grandmother, and side dishes brought by my aunts. I was no older than five, and have hazy recollections of these dinners, other than the warmth of family and the familiar smells of home cooking. To be included meant to eat, drink, smoke (it seemed they all did it back then) and converse around that big dining room table. I can imagine that someone daring to bring their own food, spreading it out on their placemat and eating it, while all those other dishes were being passed, might not go over well. 

As I reflect on my cousin Sandra, it occurs to me that she may have had celiac disease. That was in the early 1960s when it was virtually unheard of in the United States. Why else would she have had to bring her own food to those cherished dinners? A diagnosis prohibiting food of any kind would have been alien and unfathomable to anyone in my family. These are people who lived through the depression after all, where popcorn was the fare for breakfast, lunch, and dinner, if they even had that! Waving away any food, especially foods made by loving hands would have been viewed as an arrogant rejection of their abundance and love. 

Perhaps she had a mental illness that made her “weird,” or maybe she made unreasonable demands on the family, but I think the most probable reason is that she was just trying to protect her health. Considering how my cousin put it, she was weird only because she brought her own food to the family dinners. In his eyes, she became the “weird one,” ousted by the family because of her audacity to bring her own food to the dinner party. Family lore according to my mother goes on to say that: “She ultimately divorced our family.” Can you do that?

It’s a sad story, isn’t it? But I think about it from time to time. I wondered if Sandra was so maligned because the family decided her special needs were so odd that they ostracized her, and she ultimately rejected them. Further, they unified at her expense. Does what happened to her mean that anyone in the younger generation who may have inherited the same disease runs the risk of being shunned? I’d like to think we’re more enlightened now, but thankfully, I’ll never know. I do recall that my mother shushed family when they talked about their illnesses around me, fearing I’d imitate them, I suppose. Her attitude was that you made yourself well, or you made yourself sick, and I think she was careful to protect me from hearing about other people’s illnesses so I didn’t get the idea that I may have them too. She had a Pollyannaish perspective, and thought everyone in her family was perfect, no matter what. That made it very challenging for me to convince her that something wasn’t perfect with me when I was finally diagnosed with celiac disease. In fact, I think she thought I brought it on myself. [I was in my mid-forties when properly diagnosed.] These were her “truths” and likely the “truths” of the collective family.

Most of those people around that dinner table fifty years ago have passed on, I imagine happily gathered “around that table in the sky.” In Sandra’s case, family members didn’t understand her dietary restrictions, agreeing she was “weird” and rejecting her for her special needs. She was stereotyped as a prima donna. Cumulative family lore develops through repeated acts of storytelling formulating familial ideologies that perpetuate collective “truths.” These stories form the group’s opinion on given topics. Sometimes these “truths” evolve from just participating in the same activities together, and developing a way of doing things that everyone agrees on, as described with the Sunday dinners above. In their lively discussions, my extended family debated “truths” about politics, news stories, and current events. Similarly, they had a collective opinion about how each other should act while sitting around that table. When someone altered the established norms, like Cousin Sandra, she disturbed rituals, and rocked the family’s agreed-upon “truths.” Her rejection of the foods required the family to rewrite their collective story. This is rarely done on a conscious level, but rather it is done as groupthink. The unspoken “truth” was: you do what we do, eat what we eat, and even smoke what we smoke in order to fit in. Buck that system, and suffer the consequences. 

In Cousin Sandra’s case, the group determined her choices were a rejection of the others. She refuted the established but unspoken ideologies. As a result, she was rejected and mocked. From their view, if she didn’t participate, she self-selected alienation. Before rejecting her, they likely cajoled her to participate, suggesting a little won’t hurt you, or come on, just a bite. In fact, I can “see” my grandmother holding up a fork with a bite on it, saying, wouldn’t you like just a taste? These urgings are attempts to include rather than exclude. What they really are saying is: you don’t want to be rejected by the family by refusing our norms… come on, just have a little so you can stay a part of our group. That is actually a compassionate message. But we don’t “hear” it that way when we’ve deemed the food being offered to us as poison, and when we feel our needs are not being honored or understood. 

I don’t think anyone in my family ever intended to bully Cousin Sandra out of the group, It just happened because of their rigid policies on how we ought to act perpetuating the ideology: Think like us, and belong. Sandra’s response could have been, “I love all of you, but not enough to eat your food.” I doubt anyone ever talked openly about it because they lacked the tools and skill to broach a constructive conversation. 

Liza (#68) reflected on when she first sat down to her future mother-in-law’s table:

My fiancé and I traveled to my future in-law’s home so we could meet each other. I sat down to the dinner table. There were foods I was unfamiliar with – a whole fish cooked complete with the eyes, some pickles that smelled odd to me, some ultra sweet cakes, cold cuts, cheese, and boiled eggs. Though I was hungry, all of the foods were unappetizing to me. Really, I became nauseated and I knew that if I didn’t eat the foods my mother-in-law prepared for that first meal, she would feel that I was rejecting her. I forced myself to eat it, but still get chills when I think about that fish looking at me from the platter.

Liza conveyed that she wanted to make a good impression on her future parents-in-law, and she knew that not eating the food on the bountiful table was not acceptable. She wanted to fit in, but the food was unappetizing to her. She said that in the future she offered to bring a dish she liked to share at the family meals. Food is so integral to our social existence that forsaking the foods made by loving hands implies a repudiation of those hands, and the people who share it. Breaking bread around the dinner table is a way that people bond. Not taking that bread, or accepting that cup of tea, or eating what everyone else eats, is viewed as a silent form of rejection. This is why having gluten sensitivities causes so many social issues, and is one of the topics in my book. People I surveyed and interviewed told me many stories like the one above. As I reflected on what people said, I realized that the heart of the problem is that we do not have language to talk about these things. If we could say, “I’m not rejecting any of you by not sharing your food. I have a disease that prevents me from eating it, and I still want to sit at this table and be a part of the conversation.” We just don’t seem to be able to have these candid conversations. But by identifying these flawed social norms, we can work to change them, so people rejecting food served around the extended family dinner table can be included, loved, and un-judged for their choices. The first step is to identify these long held “truths,” put words to them, and discuss them openly, rather than living with unstated dysfunctional consensual rules that cause people who defy them to be alienated. 

Ideologies in Culture

In this book, I explore how dominant beliefs drive behavior patterns of commensality (the act of socially sharing food). Ideologies are complex, with many activated at the same time around behavior, such as rules of etiquette, and acceptable religious practices. When on the powerful side of the ideology, life is natural and normal and social interactions are smooth. However, when on the oppressive end, a person can be subject to scrutiny or even punishment until they conform to expectations. This is particularly true of practices and beliefs surrounding food. Traditional foods and preparation practices are disrupted when dietary restrictions are expressed, deviating from expectations and requiring adjustments in beliefs as new narratives emerge (Bochner, et al., 1997). Food is often the focal point for ritual, ceremony, and everyday life. 

When considering ideologies concerning food practices, it all comes down to expectations. These maxims drive behavior patterns and set social standards that govern acceptable social behavior, rituals for traditional ceremonies, and practices to assure health and welfare. Dogma related to gluten or gluten-containing foods is deeply coded in ideology such as you are what you eat and gluten-free is a fad. This means they are a system of ideas and principles that are taken as natural and normal, implemented without thought. These “truths” put individuals on the defense when communicating the severity of their food allergies or autoimmune reactions, because they simply don’t serve us anymore. Ideologies diminish the seriousness of food sensitivities in nearly every social setting. 

Ideological Conundrums

Therein lies the rub. People who are diagnosed with celiac disease or gluten sensitivities are faced with the need to redefine “truth,” as they learn about the extent of their sensitivities and reactions to various foods. These new “truths” must be teased out and tested by the individual with celiac disease or food sensitivities until firmly believed, and then communicated and hopefully accepted by his or her peers. Cousin Sandra’s attempt and reaction illustrates how this testing can play out, for better or worse. Participants in the interviews discussed this book share their experiences while trying out new “truths” in various venues. Many shared that it was a tricky proposition, requiring them to learn more about themselves, how they handle conflict, and how they co-exist with loved ones. If a person is diagnosed with diabetes, they face having to make diet and lifestyle changes, but they don’t get mocked and ridiculed by society. People with diabetes are often treated with more compassion and understanding. Similar to celiac disease, diabetes is a genetic disability that requires constant dietary vigilance and daily management. An Internet search on “diabetes fad” versus “gluten fad” reveals that diabetes is not considered a fad and is taken significantly more seriously than celiac disease. Whereas the Internet search on “gluten fad” yielded multiple pages of hits. Perhaps diabetes is not considered a fad because doctors regularly test for it as part of an annual check-up, and because approximately 22 million Americans have it (Statistica 2016b), compared to only one million people diagnosed with celiac disease (Fasano, et al., 2003). Those avoiding gluten face cultural, gluten-centric forces that make “being gluten free” very challenging. As truth is redefined, the individual with celiac disease or food sensitivities undergoes an identity transformation.

The book examines three themes: ideological drivers related to food and gluten, familial adaptations or non-adaptive responses, and identity transformation with disease. First, we’ll uncover what causes ideologies to form by examining governmental regulations, religious beliefs, etiquette practices, media, and advertising to see how they define our gluten centric society. Next we’ll look at how ideologies affect family and friend social interactions. One chapter attempts to “rewrite” the script with our newly acquired knowledge of dysfunctional ideologies. We’ll check in with individuals from the study to learn how they handle these newly adapted “truths” and how they shifted their thought process to positively transform their lives. Finally, I’ll share the wealth of information gleaned from the interviews, discuss the American Disabilities Act (ADA), and end with “where do we go from here.”

In future chapters, I’ll explain the notion of ideologies in more detail, but for now, please understand that this “shift” in thinking redefining long-established “truths” is a fundamental transition for individuals determined to remain gluten-free. The next chapters define and discuss ideological influencers which I term: reluctant tolerance, gluten-doubt, able-body bias, “sorta scientific,” I-Know-Best, diet discretion, exclusionary etiquette, absence of agency, sacred bread, dietary discretion, sexist scrutiny, size surveillance, living by the numbers, and yours, not mine as they relate to food and gluten referring to taken-for-granted “truths” that inform guide daily life when interacting in rituals with others. These ideologies stand between living with celiac disease with grace versus living with strife and angst. Identifying them and offering language to define them is the first step to navigating the gluten-free lifestyle gracefully.

Discussion Questions for Forum

1. How do your “truths” about gluten sensitivity differ from the “truths” of your family and friends?
2. How do those differences in “truth” affect your social encounters with your family and friends?
3. How do you convince your family and friends about your newly discovered “truths” as you navigate the gluten-free lifestyle?

Copyright © 2021 by Alternative Cook, LLC

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A Note on the Participants
Throughout the document, names of interview participants are noted with pseudo-names and their corresponding respondent number. 

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