Search the Community

Celiac.com 07/12/2016 - Late in 1998 after discussions with a colleague, who later became my mentor in this field, some loud bells started to ring inside my head as we talked about this little-known (to me at least) condition called celiac disease, an autoimmune disease, as well as non celiac gluten sensitivity. Both of these ailments are triggered by a family of dietary proteins called gluten. Of course, I had been following eating practices based on commonly held beliefs about wheat as the "staff of life" and doing things that were taught to me as 'scientifically accurate'. Yet talking with my colleague, I kept getting answers that implicated this nutritional food group for a myriad of problems that I'd had for as long as I could remember. Hearing about these ailments caused by gluten, I started connecting some of my own experiences with the signs and symptoms he was talking about, especially in relation to my journey through the education system. Physical and behavioral problems had plagued my educational life, making it a disaster. I worked with various educational specialists, from the very beginning, yet they did not seem to be able to help me much. I couldn't maintain a pace of learning that was even remotely close to that of my peers, in most of my scholastic endeavors. As my self-esteem dropped, my behavior worsened. I found myself increasingly being removed from classes and from schools. I sometimes thought that if I heard the words "he just does not apply himself" one more time, I would spontaneously explode. That being said, I am still very thankful for some compassionate, caring teachers and coaches who saw through all my issues and stayed committed trying to help me muddle through and keep moving along in my educational journey. As a high school athletics coach and teacher of Health and Physical Education, now, I often find myself offering dietary concepts and information to students and colleagues that is at odds with what I learned at university just over 20 years ago. And the misinformation I learned is still commonly being touted, even today. Admittedly, research in the field of Nutrition has undergone some dramatic changes over the last two decades, but what I'm talking about is a more fundamental shift in thinking about what we eat and whether it will promote optimum athletic performance, protection from disease, longevity, and a healthy body composition that is more in line with wellness. For instance, I was taught that carbohydrates are the preferred fuel for our muscles, and that carbing-up prior to an athletic event is an effective and desirable strategy. I was also taught that weight loss could be achieved through increased physical activity. I now view these issues very differently. Athletic performance is often enhanced by avoiding many of the foods, such as gluten and sugar, that I was taught to value. Today, I am constantly seeing articles or interviews about high performance athletes who have left the old nutrition paradigm behind and are having great success and increased career longevity in their chosen field. Novak Djokovic is one prominent example where the underlying problem was celiac disease. Vande Velde and Tom Danielson are two professional cyclists who also report performance increases from a gluten-free diet (1). Such a shift in eating can also, especially among young people, remove or reduce learning disabilities as reported by one school that works only with children who struggle with dyslexia (2). Conventional thinkers seem to believe that these benefits have something to do with improved nutrient absorption. However, they may come from enhanced nerve conduction or function. After all, Marios Hadjivassiliou and his colleagues at the Royal Hallamshire Hospital at the University of Sheffield have long been reporting that gluten, even in the absence of celiac disease, is responsible for a large portion of neurological ailments of unknown origin (3). Or the improvements may come from something entirely different. But wherever the improved performance and health are coming from, the gluten-free diet seems to be a great starting place. For instance, a former student, C.W., who has given his permission for me to talk about his case, experienced dramatic changes on a gluten-free and dairy free diet. Already an accomplished athlete, C.W. had also struggled for years with serious academic problems. He struggled with his reading and his writing and was still functioning at the level of an elementary student. A colleague and I recommended that C.W. try this diet to hone his fitness. Not only did he enhance his athletic performance, his reading skills improved abruptly and dramatically. Both his comprehension and his reading speed increased significantly over just a few months. Before he had been on the diet a full year, he was reading novels for pleasure. This was a far cry from his prior brushes with reading, where he was often unable to remember what was said in a sentence he had just finished reading. Certainly, by the end of a paragraph he was previously unable to say how it had begun. Now, he is reading novels, enjoying the experience, and he remembers them well enough to be able to talk, in detail, about the story. My own experience with the gluten-free diet has not produced such rapid results, at least regarding my reading and writing. I certainly felt healthier very quickly, and found it much easier to have a leaner body composition. Many of my minor physical complaints also disappeared, but it has taken years for my struggles with reading to diminish. Today, I am able to read highly technical reports from the peer reviewed medical and nutritional literature. I also find myself reading large, technical books about nutrition and other health issues. I read them cover-to-cover, and I understand most of what I read. My writing is also improving gradually. There is no question in my mind that the gluten-free diet has helped me enormously in these areas, although much more slowly than they helped C.W. Neither do I know how many other children that a gluten-free diet could help. I can only say that if you or someone close to you experiences a learning disability or unexplained gastro intentional issues or withdrawal symptoms when trying to eliminate wheat for a short time, it would be very worthwhile to follow a strict gluten-free diet for six months. Sources: http://rosecole.com/old/articles/fat-loss/enhance-athletic-performance-go-gluten-wheat-free.html Alexandra Blair. Wheat-free diet gives food for thought. http://www.timesonline.co.uk/tol/news/uk/article444290.ece Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. (1996). Does cryptic gluten sensitivity play a part in neurological illness? Lancet. Feb 10;347(8998):369-71.

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.