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  • Dr. Scot Lewey
    Dr. Scot Lewey

    Gluten Sensitivity: A Gastroenterologist's Personal Journey Down the Gluten Rabbit Hole by Dr. Scot Lewey

    Reviewed and edited by a celiac disease expert.

    This article appeared in the Winter 2007 edition of Celiac.coms Scott-Free Newsletter.

    Celiac.com 01/30/2007 - Gluten intolerance resulting in symptoms and illness similar to celiac disease without meeting diagnostic criteria for celiac disease is a new concept. This concept of non-celiac gluten sensitivity (NCGS) or gluten related disease (GRD) may be a new paradigm that is hard for some people to swallow, especially when I suggest that it affects as much as 10% to 30% of the population.

    Gluten ingestion is an avoidable, treatable, and reversible cause of illness in many people. It is contributing to the rising epidemic of autoimmune diseases. Many resist these concepts finding them either unbelievable, unacceptable or both. I believe that their rejection is neither rational nor helpful. It may be reasonable to reject them for cultural or financial reasons though I don’t believe they can legitimately be rejected based on scientific grounds or experience.

    Celiac disease is not rare. Celiac disease affects 1 in 100 people in the world. Yet the diagnosis of celiac disease is still frequently missed and/or delayed.

    It is a common disease that is often undiagnosed or misdiagnosed. It may even be the most common autoimmune disorder. Though the risk is largely genetic, it is preventable by simply avoiding gluten. Autoimmune diseases associated with celiac disease may also be preventable by avoiding gluten.

    When I was in medical school over twenty-five years ago, I was taught that celiac disease was rare. In residency we were shown photos of short, emaciated children with skinny limbs and pot-bellies. We were told that their medical history included symptoms of profuse, watery, floating, foul-smelling diarrhea, and iron deficiency anemia. The picture and story was burned into the hard drive of our brains, not necessarily because anyone believed we would see someone with celiac disease in our practice, but because celiac disease was considered rare and odd enough that it was a favorite board examination question. That image and story remains in the mind of most physicians, preventing them from seeing celiac disease in a much broader light.

    When I entered subspecialty training in gastroenterology, 13 years ago, specific blood tests for celiac disease were available but still new. We were beginning to order the blood test when classic symptoms of celiac disease were seen without an identifiable cause, or if we happened to sample the small intestine during endoscopy and classic Sprue changes were seen in the intestinal biopsy. celiac disease was still considered somewhat rare. We did not routinely biopsy the small intestine to screen for celiac disease, and genetic tests were not yet available.

    It wasn’t until 2003 that Fasano’s landmark article reported Celiac disease affected 1 in 133 people in the U.S. Only recently has it been accepted that family members of people with celiac disease, those with digestive symptoms, osteoporosis, anemia, and certain neurological, skin or autoimmune disorders constitute high risk groups for celiac disease. They have an even higher risk of between 2% to 5%, though most physicians are unaware of these statistics. Every week, using the strict diagnostic criteria, I confirm 2-3 new cases of celiac disease. I also see 5-10 established celiac disease patients. However, for every identified celiac disease patient there are 3-10 who have clinical histories consistent with celiac disease, but who fail to meet the diagnostic criteria. Yet they respond to a gluten-free diet. Many have suggestive blood test results, biopsies and or gene patterns but some do not.

    More than 90% of people proven to have celiac disease carry one or both of two white blood cell protein patterns or human leukocyte antigen (HLA) patterns HLA DQ2 and/or DQ8. However, so do 35-45% of the general U.S. population, especially those of Northern European ancestry. Yet celiac disease is present in only 1% of the same population. DQ2 or DQ8 are considered by some experts to be necessary though not sufficient to develop celiac disease. However, celiac disease without those two genes has been reported.
    Other gluten related diseases including dermatitis herpetiformis, the neurological conditions of ataxia and peripheral neuropathy, and microscopic colitis have been described in DQ2 and DQ8 negative individuals. The DQ genetic patterns found in other gluten related diseases and associated with elevated stool antibody tests indicate that many more people are genetically at risk for gluten sensitivity. Furthermore, the response of numerous symptoms to gluten-free diet is not limited to people who are DQ2 or DQ8 positive.

    Most celiac experts agree upon and feel comfortable advising people who meet the strict criteria for the diagnosis of celiac disease: they need to follow a life-long gluten-free diet. Controversy and confusion arises when the strict criteria are not met, yet either patient and/or doctor believe that gluten is the cause of their symptoms and illness.

    Many alternative practitioners advise wheat-free, yeast-free diets, which are frequently met with favorable response to what is really a form of gluten-free diet. Similarly, the popularity and successes of low carbohydrate diets require adherence to a diet that has been credited with improvement of headaches, fatigue, bloating, musculoskeletal aches, and an increased general sense of well-being that is self-reported by many dieters. I believe this is because of the low gluten content. Gluten avoidance is clearly associated with improvement of many intestinal and extra-intestinal symptoms such as those listed above.

    Many also stumble onto this association after initiating a gluten-free diet or wheat-free diet on the advice of friends or family members; dieticians, nutritionists, alternative or complementary practitioners; or after reading an article on the Internet.

    Within the medical community, there seems to be an irrational resistance to a more widespread recommendation for gluten avoidance. Physicians who maintain that those who fail to meet strict criteria for diagnosis of celiac disease should not be told they have to follow a gluten-free diet will often acknowledge that many of these patients respond favorably to a gluten-free diet. Some, however, continue to insist that a gluten-free diet trial is unnecessary, unduly burdensome, or not scientifically proven to benefit those who do not have celiac disease. This position is taken despite the absence of evidence that a gluten-free diet is unhealthy or dangerous and much evidence supporting it as a healthy diet.

    Those of us who have observed dramatic improvements, both personally and professionally, find such resistance to recommending a gluten-free diet to a broader group of people difficult to understand. Considering the potential dangers and limited benefits of the medications that we, as doctors, prescribe to patients for various symptoms, it really seems absurd to reject dietary treatments. Yet, it does not seem to cross most doctors’ minds to suggest something as safe and healthy as a gluten-free diet, let alone to, at least, test for celiac disease.

    My personal journey into gluten related illness began when my physician wife was diagnosed with celiac disease. I had mentioned to her numerous times over several years that I thought she should be tested for celiac disease. After her second pregnancy she became progressively more ill experiencing, for the first time in her life, diarrhea, fatigue, and chronic neuropathy. An upper endoscopy revealed classic endoscopic findings. Celiac disease blood tests were elevated, and genetic testing confirmed she was DQ2 positive. This forever changed our lives and my practice. But the story doesn’t end there.

    Having diagnosed myself with irritable bowel syndrome (IBS) and lactose intolerance in medical school, I had not considered gluten as a possible cause of my symptoms until my wife turned the table on me and said I should also be tested for celiac disease. My blood tests were not elevated but I was confirmed to also be DQ2 positive.

    Having observed a good response to gluten-free diet in a few of my patients who had elevated stool gliadin antibody levels, I looked critically at the research behind this testing and spoke with Dr. Ken Fine before paying to have my entire family tested through Enterolab. Both my gliadin and tTG antibodies were elevated and I responded well to a gluten-free diet. I began recommending stool antibody and DQ genetic screening to patients who did not meet the strict criteria for celiac disease but appeared to have symptoms suggestive of gluten sensitivity. Contrary to some critics’ claims about the stool antibody tests, there are many people who do not have elevated levels. Almost everyone I have seen with elevated levels has noted improvement with gluten-free diet, including myself.

    Not only did my “IBS” symptoms resolve and lactose tolerance dramatically improve, but my eyes were further opened to the spectrum of gluten related illness or symptoms. I was already aggressively looking for celiac disease in my patients but I began considering non-celiac gluten sensitivity (NCGS) or gluten related diseases (GRD) in all my patients. What I have found is that gluten is an extremely common but frequently missed cause of intestinal and non-intestinal symptoms. Dramatic improvements in symptoms and health can be observed in patients who try a gluten-free diet.

    Since only a fraction of DQ2 or DQ8 positive individuals have or will eventually get celiac disease, does that mean gluten is safe to eat if you have those gene patterns? Even if you do not get celiac disease, does continuing to eat gluten put you at risk for other autoimmune diseases, especially ones linked to the high risk gene patterns? Why do some people with these patterns get celiac disease but most do not? Do some who do not have celiac disease experience symptoms from gluten that would improve with gluten-free diet? These questions need to be answered so that people can decide whether they want to risk that gluten is causing them to be ill, or is increasing their risk of celiac disease or other autoimmune diseases.

    Added to my gluten-free diet, a daily diet of scientific articles on celiac and gluten related disease has revealed that there are many clues in the literature and research indicating the existence of non-celiac gluten sensitivity or a need to broaden our definition of celiac disease. Dr. Hadjivassiliou has called for a new paradigm. He advocates that we start thinking of gluten sensitivity not as an intestinal disease but a spectrum of multiple organ, gluten-related diseases. Mary Schluckebier, director of CSA, asks that physicians interested in this area work on forming and agreeing on new definitions for gluten related illness while pushing for more research and cooperation between medical researchers, food and agricultural scientists, dieticians, and food manufacturers.

    Only those who look for NCGS and advise a gluten-free diet to those not meeting the strict criteria for celiac disease, are going to see the larger group of people who have a favorable response to a broader application of the gluten-free diet without further research. Those of us who are personally affected by gluten sensitivity or professionally involved in treating individuals with adverse reactions to gluten (or both) should support the research into the broader problem of gluten related illness. I believe that NCGS is real and will be validated in studies. Are you open to this concept and are you willing support more research in this area?

    Dr. Scot Lewey is a physician who is specialty trained and board certified in the field of gastroenterology (diseases of the digestive system) who practices his specialty in Colorado. He is the physician advisor to the local celiac Sprue support group and is a published author and researcher who is developing a web based educational program for people suffering from food intolerances, www.thefooddoc.com

    Copyright 2006 The Food Doc, LLC. All Rights Reserved.


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    I've been gluten free for only 2 weeks and have seen amazing results that I didn't think were possible from any diet, drug, surgery, or treatment. I started the diet immediately after the blood-draw and have since had the results come back negative for Celiac Disease. The tests seem a mere formality---the results of a gluten-free diet speak quite loudly. My most bothersome symptoms included fatigue, flu-like pain, and myoclonic jerks. These symptoms are now greatly reduced, despite hearing that neurological symptoms like myoclonus (involuntary, uncontrollable large muscle jerks) are not likely to reverse with a gluten-free diet. No MRI, EMG, bloodwork, doctor or specialist (including my excellent neurologist and rheumatologist) could pinpoint the cause of the myoclonus. Who would have guessed it was in response to toxic gluten? I no longer feel as if I'm dying from a long drawn-out terminal illness, and I actually feel energized after eating---something I've never experienced in all my 38 years. A note to the wise: Even if you test negative for celiac disease, try a strict gluten-free diet for a couple months. There was seriously a time when I thought a wheelchair might be in my future because of fatigue and weakness from what was diagnosed as Fibromyalgia. I now have my life back. I cannot stress enough how amazing this change has been. Don't hold out for a positive celiac test. NCGS should be considered.

    Thank you so much I to am diagnosed with fibro and convinced that no help will come from doctors started a gluten free diet 4 days now in to the diet my fatigue is going slowly down.

    Still wait to have improvement with gas, but I truly start to believe in new life thank you for your comment.

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    I was thinking of something. Don't we have a lot of genetic manipulation of our grain and corn products to grow them bigger and stronger supposedly? Maybe that is the main cause of the gluten sensitivity, that it isn't natural gluten, but more a manipulated gluten. An interesting thought, I am not a scientist, but its an interesting thought.

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    This article answers makes so much sense of the symptoms I have had most of my life - I am 65 and have tested negative for Celiac - however, my youngest daughter is positive for celiac and my eldest daughter's son has dermatitis herpetiformis. In addition to the usual symptoms, the peripheral neuropathy I have had in my feet for the past 35 years now makes sense - I am not diabetic either. I have been gluten free for the past 6 months and most of my symptoms went away. In fact, when my daughter who had just been diagnosed with CE came for a visit in December, we all ate gluten-free to show support, and that is when my own symptoms started disappearing! After 2 bouts of blood tests, still negative for celiac, so must be NCGS - and gluten free the rest of my life. Thanks so much for making me feel like I am not losing my mind, too.

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    Excellent article. I was gluten free for two months before having the blood tests for the antibodies. They were present but not high enough to be called celiac disease. I had the fecal tests and gene test done through Dr. Fine's Enterolab. I have both the DQ2 and DQ8 genes plus the antibody level was high and this was 4 months after going gluten free. Also found out that i was casein intolerant, What a lifestyle change.

    I started looking at all this because there were 9 children in our family and so many diseases and cancers. Now that I am getting on the right train and the right track I am having difficult convincing my siblings and family to be tested.

    I have pulmonary hypertension secondary to scleroderma, osteopenia, Vit D defenciency, iron deficiency, my hair was falling out (that has improved since going gluten free), constipation, reflux, aches and pines all over the place--muscles and joints. It took 57 years to get this way and I know it will take time to undo some of the problems.

    Maybe this will help my family understand what we are up against.

    Cindy,

    Lewisville, NC

    PS I had this bumpy itchy rash as a kid and off an on as an adult. It was diagnosed from contact dermatitis, to ringworm to neuro dermatitis. I now know what it was. We have to be our own medical advocates. If what you are told does not make sense do not just accept the answer. Get another opinion.

    The standard advice is NOT to go gluten-free before taking the blood test for celiac disease. I've read that you should eat one to four slices of wheat bread per day for four to six weeks prior to taking the test. Failure to do so can result in a false negative, which may be what happened in Cindy's case.

     

    If you're not consuming wheat before the test, you may falsely test as negative.

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    Excellent article! I recently tested borderline for anti-tissue transglutaminase, and my doctor wants me to have a colon biopsy (celiac is in my family; my father had a severe undiagnosed case for decades). Whether the test comes back positive or not is probably irrelevant though, as celiac is simply one possible manifestation of gluten intolerance, not the only---or even necessarily the most common or serious---one. Now if I can just convince Dad that a white flour sugar cookie a few times a week is no little thing, even if he only (thinks he) feels a "little" sick afterwards.

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    Thank God for doctors such as this one! Maybe the new crop of gastroenterologists coming into the profession will be able to wake up the rest of the doctors in their discipline to this rampant problem. Most gastroenterologists that my family and friends have visited have been completely useless in diagnosing their gluten-related digestive issues. It's shocking how behind the curve most of these specialists are. Think of the years and years of needless suffering (not to mention the amount of money wasted on drug-based approaches) people are enduring when we have to do is change our diet! Thanks again for the brilliantly written and thoroughly researched article.

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    Oh, This is so comforting to know that there are others who have had these problems with food and felt so alone as doctors brushed off the connection with foods and problems like neuropathy, irritable bowel, migraines, and mood changes, etc. As a result of more than 40 years of feeling like every day is a scientific experiment, I feel better at 67 than I did 50 years ago! Keep those food diaries and include reactions with the nervous system: panic attacks, brain fog, itching, numbness, migraines. Those reactions are almost never considered by doctors to have a connection with food. If the patient does not break out in a rash or have hay fever, many doctors will not consider foods. Thankfully, I had a doctor who had problems himself, and was able to help me, 30 years ago. He had worked with Theron Randolph, a clinical ecologist and had been helped. Thank you for helping me remember some of the misery I experienced years ago, and giving me motivation to stay on the diet that I know has helped me. After being very careful for weeks and/or months, I can tolerate some wheat, milk, even eggs. Then it is difficult to avoid them. I feel like I am addicted. It takes a week or more to get back on the right track again and feel better. I had been off my diet and I was eating everything when I had blood tests this summer. My liver enzymes were elevated. I was very careful for one month, and the enzymes were tested again with normal results. I have been on and off the diet hundreds of times in the last 40 years, and still I have trouble believing that the bowl of ice cream or the delicious sandwich will cause the muscle and joint pain or the headaches or the anxious feelings or the depression. Thank you all for helping me feel that my connections with physical and emotional pain and the foods I eat are valid. Thank you for the article and the comments.

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    For my fellow sufferers of all gluten/wheat related diseases & conditions:

     

    This doctor has legitimized what we already felt, and intrinsically knew: just because the tests come back negative does not mean we are delusional or that we should eat wheat/gluten.

     

    I have been suffering from episodic depression, PMS, cystic acne, chronic yeast infections every month, and now they just diagnosed me with a GI motility disorder (blanket term for we don't what's wrong with you).

     

    They thought I had an ulcer. So, I stopped drinking alcohol, then soda, then fatty foods, and in one month I had cut everything out except for Carr's Water Crackers, Gatorade & Ensure. Everything else caused me to have severe gas, bloating, crippling abdominal pain, diarrhea, constipation, blood in my stools, heart burn, nausea.

     

    They then ordered an endoscopy & colonoscopy: both came back negative. They took biopsies & I am waiting on the results, but I won't be surprised if they come back negative too.

     

    At this point my physician's have silently lumped me with the "psych cases." It has cost me over $5,000 in tests & medical bills, I had to withdraw from college this semester, and I can't work.

     

    Right, I made it all up in my head so I can sabotage my life with an imaginary disease & pay money for tests that I don't have while going into debt over medical bills.

     

    Thank you Dr. Scot Lewey, for vindicating so many of us who are ignored or dismissed as "psych" cases by physicians who are ignorant to NCGS and it's relatives that are not as widely recognized by the medical community.

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    I am so glad I found this article. I am cancelling my endoscopy this week. After 20 years of gastro symptoms, including the last 7 years of "daily diarrhea" I knew within days of going gluten-free that I had found the culprit. I was a whole wheat advocate for over 20 yrs. thinking I was a really healthy eater. Who knew that I was actually poisoning my body and not receiving the full benefit of all of the other heathy foods I was so proudly eating!!! I just thought this was normal for a high fiber eater like me and I should avoid onions and garlic. My symptoms were GONE WITHIN DAYS and after 2 months of gluten-free I decided to test the waters and sure enough the amount of diarrhea/gas/bloating/acid relux directly corelated with the amount of gluten I consumed. That is the only test I need. Now I look at bread and pasta and anything else with gluten in it and I just have no desire for it. It's just not worth it and there are so many gluten free alternatives now it's just not that big of a deal. I do miss a good flat bread pizza though I have to say. That would be my only cheat item that might be worth the stomach ache, etc. but I'm determined to find an alternative recipe! I would say to anyone out there who is dealing with puzzling symptoms that have the doctors scratching their heads, go gluten free for a couple of weeks and just see what happens. I would certainly do that before I tried medications that have who knows what kind of side effects. What do you have to loose???

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    Thank you so much for sharing this information. I've been suffering for most of my life with various symptoms that only worsened. I attributed it to anything but the food. I even avoided eating at work as I felt better and had more energy when I wasn't eating. I also avoided the coffee vending machine because it made me feel bad.

    2 months ago I became a vegan by choice and as consequence, most of the foods I was buying from the store were eliminated and I had a month of a diet with high-fibre rice, quinoa, beans, vegetables, nuts, seeds and fruits. I felt excellent and very high in energy, and my bowel movements were regular, no pain, lost 2 kg from water retention, basically I felt reborn.

    However, I continued having severe reactions to the tea water from the vending machine at work, which I attributed to traces of milk, thus I avoided it. It is just recently that I discovered that vending machines for coffee and hot chocolate contained gluten.

    Then, two weeks ago I went to a business trip and instructed the hotel staff to make sure my food was egg, milk, soy free (as I mistakenly suspected these foods to be the cause of my problems). Even though the food was free of those, the second day I suddenly felt very bad, bloated, depressed severely, even had problems talking, moving my lips, difficulty to focus, I couldn't do any work... Severe anger, anxiety, irritability followed the day after and it continued for almost a week. That's when I suspected gluten, because unlike my home diet that excludes bread, I had bread at the hotel... I also connected the dots with other similar episodes...

    So I got tested for food allergies and they came back negative. The doctor just dismissed my symptoms and told me to come back in a few months if I lose weight??? I was angry, but I knew there was a reason for my issues and I was certain it was gluten. I have been gluten free for a week now and my symptoms are getting slowly better, both the gastrointestinal and the mental ones... So, I am determined to see this through and get better!

    Thank you so much for acknowledging this issue! I hope we can spread the word and help many more people overcome their problems associated with gluten even if they aren't aware of it!

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    I am 72 and have not been tested. I am being tested tomorrow. I know I am sensitive to gluten as I was put on a diet in the navy and found out it was the Atkins diet back in 1977. I lost 100 lbs and felt great. I didn't think much about it until I gained back 80 lbs and felt so depressed, tired and hurt all over. I went back on the diet and most of the symptoms disappeared and I lost another 100 lbs and I went back to a normal diet. After a few months I began to feel bad and I had tests done for gull stones, upper & lower GI and a lot more tests. I had bad headaches, bloating , skin rashes , so tired at times I felt like just giving up--bad indigestion, and my personality changed from happy to going to silent and sullen. A friend said have you been tested for celiac and and I decided I would try a non-celiac diet and I have improved some but it hasn't been long enough. More tests tomorrow. Symptoms include bloating, gas, swelling legs, eyes itching, headaches, and now it has become awful itching all over, and I have trouble breathing at night (wheezing). I think I should get tested!

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    Thank you for setting my mind at ease - even if I am not diagnosed coeliac (testing in progress) at least I know that I am among others who understand that what I am experiencing is as real as those who have the coeliac diagnosis.

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  • About Me

    A practicing gastroenterologist in direct patient care but who also participates in teaching medical students and physicians in training as a Clinical Professor of Medicine at Rocky Vista University College of Osteopathic Medicine and at Kansas City University of Medicine and Biosciences. In addition to authoring peer review articles, book chapters and presenting clinical research Dr. Lewey has conducted, he has authored over 50 online articles, numerous blog posts and tweets about digestive and food related issues. As a physician who is a fellow of six professional societies Dr. Lewey serves at a national level on several committees, as a reviewer for journal articles and case reports, a media representative for the AOA Media and ACG on digestive health and disease and has been featured in various print, television, podcast and online media publications about digestive issues. As a expert in digestive diseases Dr. Lewey is also a medical legal consultant and expert witness. Dr. Lewey can be reached at Facebook.com/thefooddoc, on twitter @thefoodgutdoc and at www.thefooddoc.com, and his blog www.thefooddoc.blogspot.com.

  • Related Articles

    Dr. Scot Lewey
    This article appeared in the Summer 2006 edition of Celiac.coms Scott-Free Newsletter.
    Celiac.com 08/31/2006 - All of us have patterns of proteins on the surface of our white blood cells. These proteins are known as human leukocyte antigens (HLA), one of which is DQ. Celiac disease and non-celiac gluten sensitivity (NCGS), and several autoimmune conditions occur more frequently...

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