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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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    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.

    Wow--are you sharing the recipe? Hope. Hope.

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    Thank you very much for this information. I was looking for a answer to my symptoms, but the celiac test were negative, but the symptoms appeared again every time I ate gluten. I had never heard before about non celiac gluten sensitivity. This text puts light in my research. I hope more doctors heard about this, it would be very helpful because every time I go to the digestive doctor he encourages me to eat wheat flour (bread, pasta...) with the consequent digestive problems.

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    The postings here describe very well what I have experienced. Over a period of many years I felt my health going gradually downhill. Cronic candida infections, anemia, joint pains, brain fog (this is the worst and most debilitating symptom, I think), tinnitus, myoclonus, severe skin rash (seborrheic dermatitis), skin infections, gingvitis, unusual headaches ("exploding head syndrom"), RLS, mild depression, bloating, tiredness, other neurological problems. Testet negative on Coeliac disease, with some inflammation in the guts though. The hospital luckily didn't ignore my complaints, but recommended gluten free, as the gastroenterologist told there are many other proteins in wheat, that could be problematic, but which are not well researched.

    Tried a urine test from a lab in Norway (Neurozym), which showed elevated levels of gluten peptides, which is thought to be able to create a host of problems in sensitive subject. Glutenfree diet was again suggested. And it has helped immensely, most symptoms have disappeared, I am getting my life back.

    But I must warn against unnecessary provocations with wheat/gluten or taking breaks from the diet, if you have already experienced positive effect from a gluten free diet. I was at first uncertain if the improvement was a coincidence, so I provoked. And I also have had to drop the diet before testings a coupple of times. I have experienced, that each times I have dropped the diet for a period, it has taken longer and longer to get well afterwards. The last time I made a provocation, it has taken more than a year on glutenfree to recover from it. The symptoms have improved a lot, but are not all gone. And the first times I went glutenfree, the symptoms quickly improved on ordinary glutenfree diet. The last times I have provoked, I have had to go absolutely wheat free afterwards. This means NO ordinary gluten free products, as these are often made from wheat starch. All ingredients lists must be studied carefully, as wheat is found in extremely many hidden forms. Even in vitamins (cellulose, glycerol etc.) and medicines, and this has now become a problem for me. So DO NOT STRAY FROM YOUR DIET, unless you are absolutely forced to do it. It will possibly aggravate your condition permanently, and you will regret it.

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    My wife and I have problems with gluten. We also have to avoid MSG in all of its 20 different forms, artificial sweeteners, processed sugar, processed salt, milk and dairy products, and meat from animals that have been fed ractopamine or treated with ivomec.

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    My 20 year old son is skinny, has floating stools or explosive diarrhoea, tired and low motivation all the time, blood just came back 'no celiac' but iron deficient anemia. He is a massive meat eater and eats very well tonnes of grains/mushrooms/bread etc. Why b12 deficient and why iron deficient? I was hoping it would be celiac but its not. Not sure where to go now. We all have celiac genes but test negative to celiac panel.

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    Is there connection between NCGS and diabetes? Or NCGS and thyroidism?

     

    I've been gluten-free for three days and feel great. My main food source has been bread my whole life. Recently, I had to reduce bread for dieting purposes and noticed that I felt much better. Then I went off the diet and started eating more bread again and experienced bloating, gas, cramps, fatigue and irritability. I decided to stop eating bread three days and have not had any of these symptoms. I did have muesli one day and had terrible cramps and gas afterward.

     

    I wonder if I have been gluten intolerant for years and did not know it. I was also diagnosed with type two diabetes almost two years ago (along with hypothyroidism which has now resolved and a lumbar herniated disc). Diabetes is also considered an immune system related disease by some doctors. There is also book called Wheat Belly that says that wheat causes fat around the stomach. Fat in the stomach area is a risk factor for type two diabetes because it increases insulin resistance.

     

    Could gluten intolerance have triggered my diabetes?

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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.

    Hi Kim,

    I know you posted this years ago but I hope you will still respond. I've had a positive blood test for celiac after years of suffering. I've also had "attacks" of myoclonic jerking which was first treated as epilepsy. I've spent years going through the medical system, only to be told by a patronizing neurologist to go see a therapist to find out what is "sub-consciously" causing these jerking episodes. Reading your post has given me hope! I will go see a celiac specialist ASAP. Who is your specialist? Do celiac specialists find myoclonic jerking as a common side affect of celiac.

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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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