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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'm the same way. Celiac tests are negative, but I have almost all the symptoms. The only thing that gets me well again is avoiding gluten. So I live as if the test results were positive, and feel like a healthy person for it.

    Wish you and your little one well.

    I have found through lots of research that the ONLY true test for celiac disease is to have an intestinal biopsy!

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    I think one of the most difficult parts of having three children with gluten sensitivity and other food sensitivities that I still cannot figure out is that almost everyone around me acts as if I have two heads.

     

    People don't realize that when they give my children something that contains gluten or other ingredients to which they are sensitive, my kids are going to have major problems later.

     

    I really do not enjoy watching my child cry until 3 a.m. because someone fed my 2-year-old a graham cracker or to have to deal with my 6-year-old not wanting to go to the potty and having accidents for 2-3 days because something she ate gave her a terrible rash on her bottom. It breaks my heart when my 8-year-old comes home in tears because staff refused to heat her food the first day of school because the school instituted a new policy stating that kids who needed food to be heated had to have a doctor's note but didn't bother to communicate that to parents before school started.

     

    Very few people would offer a diabetic child a banana split with a milkshake and say, "But look--she's enjoying it!" I would not think that a child with a severe peanut allergy would be offered a bag of peanut M&M's and then act like the parents are being overprotective if they have to give the child medication so that the child won't stop breathing. It's strange how even a pastor would say "Well, come up here before church and clean and vacuum the room yourself" rather than asking people who are watching kids in a children's area to make sure that they don't leave crackers all over the children's table and floor.

     

    Perhaps another reason that many doctors are not particularly interested in advising people to go gluten free is that they may lose repeat patients. A physician can get a lot more money treating multiple irritable bowel symptoms. If someone who is sensitive to gluten goes gluten free, they may have a huge increase in quality of life, reduction in numerous symptoms, and a greatly decreased need to see physicians.

     

    I do think there needs to be much improved education about gluten sensitivity, not only among health care workers but among the general public as well. It would be incredibly helpful if manufacturers of food and drugs would always label their products as either "gluten free" or "may contain gluten." I'm often shopping with three small children. It's a bit time-consuming to have to search through labels and even contact manufacturers each time I shop. I would love to see some experts really push our lawmakers with this labeling. Having to list wheat has been helpful, but just because it does not contain wheat does not mean that it doesn't contain gluten.

     

    I truly appreciate articles like this, Dr. Lewey. Sometimes it is incredibly frustrating to live in a situation that so few even recognize, much less understand.

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    Great Article, I have been diagnosed celiac at 60 years of age, after years of stomach pains, bloating, reflux, fatigue and other symptoms too numerous to mention. Thank you for making us so aware of celiac disease. I was prompted to ask my doctor to do blood tests and was quite relieved to find an answer, after years of misdiagnosis. Thank you.

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    I love this article and it is so true. My son began to experience severe irritable bowl syndrome symptoms after being vaccinated 3 years ago. The doctors had no clue to why this was happening and I was so frustrated with them. I suspected food issues especially dairy but wasn't sure about gluten. Then I went to a naturopath for some unrelated problems and found out that I had multiple food sensitivities to gluten, dairy and others. I had both of my sons tested and they came back with the same thing. The naturopath told us that my one son with the irritable bowl syndrome had underlying allergy issues and the vaccines exacerbated the problem. Now we have eliminated all the foods that were causing problems. My son no longer has irritable bowl syndrom symptoms as long as he is careful about what he eats. I wish the rest of the medical community would get their act together and realize this is a serious problem that is not being addressed. Thanks for getting the word out with this excellent article!

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    It is was so wonderful to read this article. I have been tested many times over the last 30 years for coeliac disease but always come up negative. However, on top of gastric symptoms and constant fatigue I developed nerve twitches, restless leg syndrome, tingling on limbs and a head tremor. Going gluten-free has alleviated most of my symptoms. What I have been searching the net to find out is if a gluten sensitive person can eat gluten occasionally (eg. when traveling overseas when it is difficult to exclude gluten) or will there be bad gut damage all over again.

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    Wow, the first time I heard of Celiac disease was when my autistic and diabetic nephew's endocrinologist recommended it for my nephew, and when he tested positive, I had my autistic son tested, and BAM!!! At 6 ft. 1, he never weighed more than 120 lbs, and looked like he suffered from starvation. I always knew he couldn't absorb nutrients from food, although he ate more than twice the normal amounts. No wonder!! Since going Gluten Free, his entire health has turned around. He's gained weight, and his gum disease has curtailed. When I first started buying him baked goodies, he'd reject everything, as you know they taste like cardboard. So, I developed a better way, and I now have a Gluten free, Flour free bakery of brownies so delicious, and so naturally made, that they taste exactly like the old flour ones.

    Please send info on the gluten-free flour free bakery of brownies.

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    I was diagnoses to have IBS by many doctors and also lactose intolerant. I was always bloated (terribly) and tired. I thought it was stress and that it was all in my head. I almost got into a depression and my love life suffered it the most. I became lonely and sad. I started to stay home and alone. No more going out to restaurants. I search for 4 years what my problem was. I stop the gluten products 4 months ago. I have to say that i feel a lot better. Sometimes i still have some gastrointestinal disorders but they last a few days and they leave me alone. I think it's because i didn't cut all the little gluten possible. It may also be because i need time to restore my body and to be healthy again. To all the people who suffered and who are suffering of gastrointestinal problems, i say don't give up. You need courage and to always try to find what works best for you.

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    I am awaiting results of my Celiac Panel. But since having the test done, I have experimented on my own, and discovered that the days I went Gluten Free all day, I had no stomach issues at all. And the days I have something with Gluten, I have the burning, and gas, and nausea, horrible rumblings.

     

    Even if my tests come back negative, I will be avoiding Gluten as much as possible from now on, but I will probably still cheat now and then. But if it ever comes to extreme discomfort, then I would probably stop all together.

     

    I was recently diagnosed with a B12 deficiency and that is why my Endo wanted to do a Celiac Panel. Several years ago I started taking probiotics, because I too, self diagnosed myself as having IBS. The probiotics helped immensely. At some point I quit drinking milk because of what appeared (more like felt) like lactose intolerance.

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    Like many who have posted here, I've had an array of to date undiagnosed symptoms ranging from GI to neurological (peripheral neuropathy, headaches, twitches). I've also had periodic muscle aches, joint pain, dizziness, blurred vision, and facial flushing. Several MRIs, loads of blood work, and a celiac panel and biopsy, everything has come back normal. I'm 30 and have been gluten free for two weeks and was wondering how long it typically takes to begin seeing signs of improvement?

    Matthew, Have you been checked for a B12 deficiency? Most of your symptoms fit that. Celiac disease is one of the causes of a B12 deficiency. Going gluten free will allow your body to start absorbing B12 again (if that is the issue), but if you are deficient you will need extra supplementation to get you built back up.

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    Gosh after reading everyone's posts, I'm beginning to wonder if Wheat is more like a Poison than a nutritional food. What if everyone in the world went Gluten free? Would it eliminate a lot of the diseases and ailments that so many suffer from?

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    This page has been a great help to me. I was diagnosed with a gluten problem at a very young age. I was hospitalized twice when I was 3 years of age. My symptoms disappeared for years. I just realized that I have been having a lot of those symptoms for at least 3 years now.

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    I have been suffering with bloating and feeling horrible for years. I had a colonoscopy at 18 because my doctor believed I may have polyps in my intestines. Nothing. I would go days without going to the bathroom and then experience severe pain with very loose stool. I have been battling this for years now. A few years ago I was told I had IBS and then was diagnosed with Lyme disease and shortly there after I got mono at 37. Now I have Epstein Barr Syndrome. And Just recently....... Shingles. I am always so tired and cranky. Last year I went on a small diet to loose a few lbs. for vacation. On this diet I cut out bread and gluten. I almost immediately felt better and lost a few! Since, I have resumed to eating gluten again and can not believe the difference In how "Sickly" I am. Today I was tested for Celiac. I am not waiting for the test to show up negative........ I know what I need to do. Hence, my trip to Shop Rite's Gluten free isle.

     

    Because of this article and all the posts, I know I wasn't crazy. Thank you.

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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.

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