Jump to content
  • Sign Up
  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • 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.


    User Feedback

    Recommended Comments



    What interests me is that I know of so many people now (including myself) who have gluten allergies but never had them 10, 20, 30 years ago!

    There seems to be an explosion of NCGS. My friend's little boy was diagnosed as celiac twenty years ago and there were two or three products available. Now there are hundreds. Even a junk food restaurant had a product 'gluten free'.

    Share this comment


    Link to comment
    Share on other sites
    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.

    Lisa,

     

    Good for you on following your mom instincts! A mother truly knows her child best.

     

    I too am a Non-Celiac, Gluten Sensitive individual. My nutritionist confirmed it with a genetic test that involved using a cheek swab sample. Very easy to do. I had 2 copies of the HLA-DQ gene, perhaps this test could help more people who are perplexed by the traditional, negative celiac tests.

    Share this comment


    Link to comment
    Share on other sites

    Wow, I am right with Kim. I was diagnosed with Fibromyalgia about a year ago and thought it was the PERFECT fit. However, at 25, I couldn't begin to think that this is how the rest of my life would be. SO, I began searching...I have been on the gluten free diet for about 9-10 months and can't believe the transformation. I now believe that others in my family could very well respond to a gluten-free diet, but I have to convince them, just like this doctor is having to convince other doctors. There is such a thing as non-celiac gluten sensitivity. I have been battling for this "diagnosis" for over 15 years. 3 surgeries and a near lupus diagnosis at 12, makes me relieved to read articles like this. I am not alone and I am not making this stuff up.

     

    I hope everyone has as much success as I have had!

    Share this comment


    Link to comment
    Share on other sites
    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.

    You are not alone!! I was diagnosed at age 25 with Fibromyalgia. I couldn't believe that I would feel "that" way for the rest of my life. I went from a college athlete to canceling dates with my husband because of how ill I felt. I went gluten free (no tests, just something I chose to do) about 2 months after the diagnosis and I have been Gluten Free for 9-10 months and have NO fibro symptoms to date. I hope that you continue to have success on your Gluten-Free journey!

    Share this comment


    Link to comment
    Share on other sites

    I stumbled upon gluten-free diet after being baffled by a combination of odd symptoms...irregular digestion, pain, bloating, muscle joint pain, hair falling out, fatigue, weight fluctuations and a weird tingling feeling in my fingertips. I am completely normal now after being gluten free for over a year. I am a scientist-type so It was easy for me to scrutinize everything I ate..be patient and stick with it even if it feels complicated..and don't give up if your test results are "inconclusive". If you eliminate something from your diet but don't change anything else and you feel better and stay better..that's good enough proof for now. just be aware that it is an ELIMINATION diet...and you have to be patient and stick with it.

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites
    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.

    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.

    Share this comment


    Link to comment
    Share on other sites

    I too came up negative on the Celiac Sprue blood panel, but I have most of the Celiac symptoms. I started suspecting Celiac disease when I went on a very restrictive low card diet to try & help my skin (I also have cystic acne). I noticed how much better I felt all around after a couple of weeks. Then I slowly started adding things back into my diet. When I got to wheat & gluten all my previous symptoms came back. Over time they even got worse, so, on my own, I went on a strictly gluten free diet and as long as I avoid it I feel "normal". Long story short, avoiding gluten has saved me from more misery and embarrassment. I'm life long gluten free from this point forward.

    Share this comment


    Link to comment
    Share on other sites

    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?

    Share this comment


    Link to comment
    Share on other sites

    Out of curiosity, has anyone had vitiligo (which is an auto-immune disorder) reverse when they omitted the gluten from their diet? I have some of the other symptoms also, such as the rashes and swelling of the stomach. However, I would like to know if this is linked as well.

    Share this comment


    Link to comment
    Share on other sites



    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    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.

×
×
  • Create New...