Jump to content
  • Sign Up
  • Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Latest Topics

  • 0

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

    Dr. Scot Lewey

    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.

    0


    User Feedback

    Recommended Comments



    Guest Eva Thomas

    Posted

    My test for celiac was negative but I have all the symptoms so this article was very helpful.

    Share this comment


    Link to comment
    Share on other sites
    Guest Lisa Cunial

    Posted

    In 1991 I was very ill and after many rounds with doctors and no help I found one who suggested a diagnostic diet. Within a week I was so much better, but it took ages to rehabilitate my whole digestive system. The one thing I have avoided since was gluten and my life has returned to being healthy. I formed the opinion that I was celiac, but as no doctor considered this I was not tested and therefore not diagnosed. Later I have been told to eat gluten so I can have the tests. I say I haven't got that time to waste being sick. I know I get sick when eating it.

     

    Then, I had a daughter and totally breast fed her for 6 months. Then, she had very light gluten load, but when she began preschool this increased with lunches etc., as I was going on the advice not to exclude it as it was vital for a healthy diet. But she developed all the symptoms of Celiac. The blood tests were negative. I wrote to a pediatric gastroenterologist in a major teaching hospital and outlined the symptoms. He did not even need a consultation just booked her in for the biopsy. The results were negative. No evidence of celiac disease. That left me in such a difficult place as all of her symptoms resolved by staying off gluten, but I had no other diagnosis. Her father (separated) and family thinks I am making it all up and sometimes fed her gluten, but she is clever (now 8 year old) and from the beginning understood the diet and enforces it. So she is a healthy child not eating gluten, with no diagnosis. But all of this has led me to think along the lines that this article suggests. I knew 17 years ago that the medical fraternity had it very underestimated.

    Share this comment


    Link to comment
    Share on other sites
    Guest Ruth Arcuri-Kovacs MS, RD

    Posted

    Excellent article, well-written and thought-provoking. I have long believed there is non-celiac gluten sensitivity but am unable to convince many (any?) physicians whose patients I counsel. I'm copying this article to use as a convincing reference tool!

    Share this comment


    Link to comment
    Share on other sites
    Guest Cindy Pickles

    Posted

    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.

    Share this comment


    Link to comment
    Share on other sites

    My mother could not tolerate gluten and had lupus.

    Share this comment


    Link to comment
    Share on other sites

    I also have been diagnosed with Lupus as Lola's mother and have all the symptoms that Cindy has. This article was very interesting to me and I plan to learn how to eat gluten free. Thank you

    Share this comment


    Link to comment
    Share on other sites
    Guest Gluten Free Mom to many

    Posted

    Thank you, thank you. I have told people that I must be a celiac in remission. Celiacs look at me and give me the uh uh, she is in denial look. I was raised by a diagnosed celiac (blood test and biopsy after about 15 years of symptoms) and had symptoms myself for about 2 years prior to my first pregnancy when my symptoms as well as my milk intolerance vanished. GO FIGURE. I have an underground undiagnosed celiac child who had a celiac blood panel done by the family doctor. He was not sure if she has it or not. This celiac panel caused us to not be able to purchase health insurance while we were self employed.

    We are now doing our very best to bury this in her history and pray that this panel never raises it's head again to haunt us (We saw this doctor only a few times and then he moved his practice). I ponder my time of symptoms and scratch my head. I count myself blessed by Heaven. How could I have done the work in my home with my 7 children and battled symptoms myself too. I would have done it, but it would have been hard.

    NCGS what a thought...

    Or is it remission? I guess it does not really matter right now, but I hope for better quality of life for Celiacs and less pain and anguish from insurance companies.

    I know insurance companies are trying to stay in business, but refusing insurance to people with such a common disease?

    Awareness is the key.

    Share this comment


    Link to comment
    Share on other sites
    Guest Teresa Gardner

    Posted

    Certainly enjoyed learning about Celiac disease

    Share this comment


    Link to comment
    Share on other sites
    Guest toni shen

    Posted

    I have been suffering from IBS after my diagnosis of acute transverse myelitis. I have been to gastro specialists who did not give me any solution for this symptom. I feel like a Goodyear blimp with a block of cement in my stomach. I will pass this article to my primary doctor. I need relief on top of my 24/7 neurological pains. Thanks.

    Share this comment


    Link to comment
    Share on other sites
    Guest Stephanie

    Posted

    I loved this article! It has been so hard to get help for our family! A year ago my (then) 3 year old daughter was diagnosed with wheat intolerance as well as some other food intolerances. She always ate tons of food but you could count her ribs front and back. Our GP said that she was 'just the tall & skinny type'. But, she also NEVER had a firm stool. After our family went wheat-free, then gluten-free and she gained 4 lbs in 2 months! The funny thing is that my husband who has had a diagnosis of IBS and reflux for years had his symptoms disappear! We are not going to try the battery of tests for celiac and related issues.

    Share this comment


    Link to comment
    Share on other sites



    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • 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.

×