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  • Dr. Ron Hoggan, Ed.D.
    Dr. Ron Hoggan, Ed.D.

    Medical Superstitions of the Twenty-First Century

    This article appeared in the Autumn 2008 edition of Celiac.com's Scott-Free Newsletter.

    Celiac.com 01/14/2009 - Gluten sensitivity and celiac disease have long been seen as a gut disease. Unfortunately, this has resulted in a variety of erroneous medical perceptions, leading to limited and distorted perspectives on the impact of gluten on human health. After a battle of more than 50 years, celiac disease is now widely recognized both in and out of the medical profession, as common and treatable only with a gluten-free diet. (This is largely thanks to the proactive efforts of a few researchers and many support group members over the last two or three decades.) Recognition of the importance of a gluten-free diet in dermatitis herpetiformis has still not reached the same level. Some dermatologists continue to prescribe Dapsone, often deriding or even failing to apprise their patients of the gluten-free diet as an alternative therapy. This is especially important for reducing the risks of certain cancers, yet many stubbornly refuse to even suggest this therapeutic alternative. Neurologists, psychiatrists, and psychologists, despite compelling evidence of the nefarious impact of gluten in a wide range of neurological and psychiatric diseases, typically continue to ignore these data in favor of pharmacological interventions. (Unlike pharmaceutical manufacturers, gluten-free food suppliers do not wine and dine physicians.)   These chemical treatments involve a cacophony of attendant side effects and lengthy periods of experimentation to find the “correct” dosage that ultimately fails to fully relieve the patients’ symptoms or arrest the progression of the disease, while usually reducing patients to a more manageable, though limited state of consciousness.  From epilepsy to cerebellar ataxia, to peripheral neuropathy, to schizophrenia, to bi-polar disorder, to attention deficit disorders, to learning disabilities, to depressive illness, the treatment of choice is pharmacological rather than dietary.    

    Similarly, we have large, vocal, and politically active groups that loudly decry the consumption of a variety of foods, from meat, to fish, to various plant families, with little or no evidence to support such interdictions. Others tout one or more food additives or consumption practices as great and wonderful substances/practices that will cure all ailments and guarantee a long and productive life. These strange recommendations range from consumption of watermelon seed extract, to acai berries, a variety of fasting procedures prescribing one or two foods during the “fasting” period, food combining, juicing, egg white omelets, wheat grass, low fat diets and even colon cleanses that involve putting coffee up your rectum. Again, there is little solid evidence to support these practices yet they appear to develop quite a following.   

    I’m not suggesting that most mainstream medical professionals support these cleansing and dietary fads. However, much of the medical profession’s resistance to their own professional literature in which solid evidence indicts gluten as a cause of disease, while embracing questionable pharmaceutical solutions, is closely akin to the superstitious practices and outrageous claims that litter the Internet and the popular media. The evidence is clear and compelling. Neurological, psychiatric, and autoimmune diseases are often mitigated by gluten restriction. Yet we continue to hear about pharmacological interventions that offer less relief and little long-term hope of remission.    

    The widely published pediatric allergist and gastroenterologist, Rodney Ford, has argued a compelling case for his theory that gluten induced neurological damage is where the gluten syndrome and celiac disease begin, in his recent book titled “Full of It”. It is a theory that makes sense of otherwise puzzling individual variations in the course of gluten-induced disease.   It also explains the high frequency of gluten antibodies found by M. Hadjivassiliou and his group, in patients with neurological diseases of unknown origin (57%) while only a quarter of that percentage had celiac disease.

    Dohan and Grassberger, followed by Singh and Kay, clearly established a therapeutic role for a gluten-free, dairy-free diet in schizophrenia. Subsequent publication of several deeply flawed, poorly designed, and sloppily conducted studies have allowed for the common rationalization required for ignoring the solid, earlier findings mentioned above. This denial continues despite the recent publication, by Anthony De Santis and his group, of SPECT findings in a schizophrenic patient whose blood flow patterns in the brain, and behavior returned to “normal” following institution of a gluten-free diet.  

    Similar work with autistic subjects, conducted by Kalle Reichelt, Paul Shattock, and a host of others, has shown that gluten-free, dairy-free diets offer real promise for symptom reduction in this very challenging sub-population. Similarly, some amazing reversals of learning disabilities, through gluten-free diets, have been reported at Nunnykirk School in the United Kingdom. Further, about two thirds of untreated celiac children show signs and symptoms of attention deficit disorders.  These children have long been reported to normalize within one year of beginning a gluten free diet (see: http://members.shaw.ca/oldsite/My_Master%27s_thesis.htm).   

    Despite all of this contrary evidence, most allopathic practitioners continue to insist that gluten is a healthful food and they continue to recommend its daily consumption. They may be willing to concede gluten’s role in celiac disease and even in dermatitis herpetiformis, but they continue to ignore all of the other reported findings in association with the broad spectrum of diseases in which gluten sensitivity or celiac disease is grossly overrepresented. They continue to ignore or deny the potential value of a gluten free diet in the face of compelling evidence. Most of these same medical practitioners and investigators would be deeply offended by my suggestion that they are little different from those advocating coffee enemas or juicing. Yet their beliefs are not based on the evidence presented in their professional literature. In my dictionary, acting on irrational beliefs is called ‘superstition’. It is the superstitious resistance to solid evidence that is most frustrating when dealing with ignorance – whether the impetus is to push coffee enemas into your rectum or ingest yet another chemical compound from a prosperous pharmaceutical manufacturer despite evidence that a gluten-free diet might produce results that are more desirable to the patient.



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    Thank you for an excellent article. I'm fed up and frustrated with the blase attitude that the medical profession has toward celiac disease. I live in Spain, and perhaps it's even worse here. Thanks again.

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    Guest Patricia Alexandrescu

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    Excellent piece of writing! The comparison between holistic medicine practices and traditional ones was interesting and amusing. I agree that the use of gluten has many neurological implications and complications; I can personally attest to that! Hats off to Ron Hoggan!

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  • About Me

    As co-author of "Dangerous Grains" and "Cereal Killers", the study of the impact of gluten continues to be a driving passion in my life. I am fascinated by the way that gluten induces illness and impedes learning while it alters mood, behavior, and a host of other facets of our existence. Sure, the impact of gluten on health is an important issue, but that is only the most obvious area of impact. Mood disturbances, learning disabilities, and the loss of quality of life due to psychiatric and neurological illness are even more tragic than the plethora of physical ailments that are caused or worsened by gluten. The further I go down this rabbit hole, the more I realize that grains are a good food for ruminants - not people. I am a retired school teacher. Over the last decade, I have done some college and university level teaching, but the bulk of my teaching career was spent working with high school students. My Web page is: www.DangerousGrains.com

  • Related Articles

    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.

    Jefferson Adams
    Celiac.com 06/26/2007 - Celiac disease is one of the most common chronic health disorders in western countries. It is also one of the most under-diagnosed. Up until ten years ago, medical schools taught that celiac disease was relatively rare and only affected about 1 in 2,500 people. It was also thought to be a disease that primarily affected children and young people. Recent studies and advances in diagnosis show that at least 3 million Americans, or about 1 in 133 people have celiac disease, but only 1-in-4,700 is ever diagnosed.
    The National Institutes of Health shows the prevalence of celiac disease to other well-known conditions as follows:
    Celiac Disease affects 3 million Americans Epilepsy affects 2.8 million Americans Crohns Disease affects 500,000 Americans Ulcerative Colitis affects 500,000 Americans Multiple Sclerosis affects 333,000 Americans Cystic Fibrosis affects 30,000 Americans People with untreated celiac disease suffer intestinal damage when they eat products containing wheat, rye, or barley. The disease mostly affects people of European (especially Northern European) descent, but recent studies show that it also affects portions of the Hispanic, Black and Asian populations as well. Celiac disease presents a broad range of symptoms, from mild weakness and bone pain, to chronic diarrhea, abdominal bloating, and progressive weight loss. In most cases, treatment with a gluten-free diet leads to a full recovery from celiac disease. It is therefore imperative that the disease is quickly and properly diagnosed so it can be treated as soon as possible.
    If people with celiac disease continue to eat gluten, studies show that their risk of gastrointestinal cancer is 40 to 100 times that of the normal population. In addition to increased cancer risk, untreated celiac disease is associated with osteoporosis, and a two-fold increase in the risk of fractures, including first-time hip fractures. Moreover, an unusually high percentage of people with celiac disease suffer from the following related conditions (% in parenthesis):
    Anemia (3-6%) Arthritis (20%) Ataxia (40%) Cancer—Non-Hodgkins Lymphoma (39%) Cows Milk Intolerance (24%) Dermatitis (5%) Diabetes-Type 1 (12%) Irritable Bowel Syndrome (20%) Liver Disease (42%) Migraine Headaches (4%) Nerve Disease and/or Peripheral Neuropathy (51%) Obesity (30-40%) Osteoporosis (4.5%) Osteomalacia/Low Bone Density (70%) Pancreatic & Thyroid Disorders (5-14%) In fact, untreated celiac disease can actually cause or worsen some of these conditions, and medical guidelines now recommend celiac screening for all people with these conditions.
    The vast majority of people visit doctors who have been in practice for more than ten years, and for whom celiac disease is a rare condition and often not considered when handling complaints. Seniors are also more likely than the general population to suffer from conditions associated with celiac disease (Arthritis, Diabetes, Liver Disease, Osteoporosis, etc). Without awareness and screening, they are at greater risk for developing disorders resulting from celiac disease--many of which are avoidable with diagnosis and treatment. Awareness of celiac disease and related issues offers seniors and easy way to improve their health and wellbeing.

    Jennifer Arrington
    I would hate to add up all the hundreds of dollars I have wasted trying to get healthy.  Now, however, I get healthy by focusing on one thing:  making my intestines healthy.  If my intestines are healthy, I can absorb food.  If I can absorb food, my body will be receiving the nutrition it needs to function, and thus I will be healthy.
    Of course, rule number one for all of us is to stay gluten free.  But, focusing on avoidance alone, can get depressing.  Instead, I like to focus on what I can do to strengthen my digestive system.  That way, all the good gluten free food I am consuming can actually benefit my body.  What good is eating healthy if you are unable to absorb the nutrients?  Pouring healthy food into a compromised gut would be as wasteful as pouring dollar bills over an ATM machine and hoping in vain to strengthen your bank account balance.
    Research shows that those of us with celiac disease/gluten intolerance often have decreased absorption despite following a strict gluten free diet.  Scott Adams summarized one of these articles on the celiac.com website back in 2003.  The article by Lee SK, et al. entitled “Duodenal Histology in Patients with Celiac Disease after Treatment with a Gluten-free Diet” implied that even though patients may feel better on a gluten-free diet, there may still be damaged intestinal areas that are incapable of optimal nutrient absorption.  Since specific nutrients are absorbed along specific locations in the small intestine, this can have long-term ramifications.  For instance, the proximal portion of the intestine is the site for absorption of vitamin B6 (pyroxidine).  If that portion is damaged, there will be decreased absorption, and your body will be deficient in B6.  You may then experience a range of neurological symptoms such as nervousness, irritability, and shakiness.  And, as happened in my case, you may see a doctor, only to be told you are having anxiety attacks and be handed a prescription for a mild tranquilizer.  Thankfully, I discovered that a good B6 supplement (Solgar “Magnesium with B6”) was all I needed and threw away the offending prescription, but this serves as an excellent—albeit oversimplified—example as to why we have to focus on improving the health of our intestines.
    Before I go on, I do want to say that the products listed below do not benefit me financially in the least.  Additionally, these are the products that work best for my body.  You may find a different brand works better for you, but as long as our focus is on getting those intestines healthy, we are all heading in the right direction!
    So, read on about what I personally consider the top four intestinal healing supplements…
    The first and best all-round product I have found that truly aids in restoring the intestinal lining is a glutamine supplement put out by a company called Metagenics.  The supplement, called “Glutagenics”, contains glutamine, licorice root, and aloe vera.  While studying for my masters in nutrition at Texas A&M University, we learned that glutamine is a key amino acid that aids in restoring the intestinal lining in patients that are transitioning from being tube-fed to a normal diet.   So, when my own chiropractor suggested this supplement and mentioned it contained glutamine, I purchased it and have been taking it on and off for three years.  
    Glutagenics is available online through various websites that carry the Metagenics brand. The supplement is unfortunately a bit cost prohibitive, but you can shop around for other brands that contain a similar blend, or buy the three active ingredients separately. Unfortunately, this did not work for me (I have an expensive gut), but it may for you.
    The next product is a good omega-3 fatty acid. Omega-3 fatty acids have so many benefits that even if you weren’t working on building up your intestines, they would still be beneficial. During my graduate research, I was fortunate to be part of an ongoing study on the mechanism whereby omega-3 fatty acids reduce the inflammatory response. Obviously, when our intestines are damaged, there is plenty of inflammation. So, including omega-3 fatty acids in our diet is vital.
    Thankfully, omega-3 fatty acids are getting easier and easier to come by. My family eats the high omega-3 brand eggs and the Smart Balance peanut butter and butter spreads. You can also purchase wonderful oil blends by Nordic Naturals. My favorite is the lemon-flavored Omega-3 liquid. The lemon flavor truly masks the fishy taste and even my children swallow the oil with minimal grumbling. Nordic Naturals is quite expensive (around $20.00 for 8 oz) but if you compare the amount of DHA you are getting per serving, it is definitely the most DHA for your dollar!
    Another great healing nutrient is zinc. Zinc is wonderful for wound healing- you’ll see it in many topical creams, but it also helps restore the intestines. Metagenics puts out a great supplement and their products are great for sensitive individuals. I find that 10mg works best for me. I don’t take it every day – too much will give you a bad taste in your mouth. Once I get that bad taste, I know I need to go off it for awhile.
    Finally (for now), find a great probiotic. The one that everyone recommends, by Garden of Life, contains wheat grass, so we have to avoid it. I do extremely well, however, on a product called Lacidophil by Xymogen. My energy levels actually improve on this brand. Xymogen has their own website where you can purchase products directly. Taking a good probiotic restores a healthy balance to your gut flora, which aids in overall health and digestion. I have just recently ordered one from Emerson Ecologics through a natural doctor and it’s supposed to be even better. It has many more strains of the good bacteria so I’m going to try it as soon as it comes in.
    Of the four products listed above, the two that I take daily are the probiotic and omega-3 oil. The other two I take on an ‘as-I-need-it’ basis.
    Unfortunately, our bodies don’t tolerate a lot of extra supplements, so go slowly and only add one at a time. Keep track of how you feel. You may never tolerate the mass quantities that some companies will try to sell you. But, since you are your own best manager, work with yourself slowly and patiently and you will find your health improves over time.
    May God bless you with the wisdom and discernment you need to live a healthy and vibrant life!


    Rivkah Roth D.O., D.N.M.
    Celiac.com 08/28/2012 - What's In A Name and When Does Celiac Predisposition Become A Disease?
    No doubt that global awareness about celiac disease and its possible involvement in a myriad of other (mostly autoimmune response related) conditions is growing. Growing, unfortunately, is confusion about terminologies and medical implications.


    The “Common” Understanding
    "Celiac disease" has become a generic blanket term not unlike how "Kleenex" today signifies no more than a box of tissue paper of any brand. So, in the public mind, "celiac disease" today stands for everything connected to a reaction to gluten.[1]
    Such an approach is highly imprecise and misses
    the need for distinction between non-celiac and/or celiac gluten sensitivity and the fact that a predisposition does not necessarily constitute disease.

    The 2012 Internationally Accepted Definition
    In an attempt to bring some clarity to the medical community, the world’s leading celiac minds earlier in 2012 met for an international convention in Oslo, Norway.[2]  During that convention, and after considering many of the most commonly used terms, they recognized

    …the presence of genetic, predisposing patterns…
    and called for a

    …distinction between "celiac disease" versus "gluten-related disorders"… [3]
    Let us be clear: This terminology refers solely to the underlying toxic effect of gluten rather than the possibly resulting disorders that may be based on other, additional triggers as well.


    Genotyping Tells Non-Celiac from Celiac Gluten Sensitivity
    Along with ever mounting genotype-related research, detailed HLA-DQ2/DQ8 human leukocyte antigen genotyping[4] today allows us to distinguish between predispositions to non-celiac and/or celiac gluten sensitivity (NCCGS) predisposition.
    Increasingly, research results link gluten issues to a considerable list of specific conditions and, therefore, allow for and promote a “natural” approach (i.e. gluten free diet and lifestyle) to resolve a complex panel of non-obvious signs and symptoms.
    Accordingly, "Celiac" is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins, prolamines, etc.—much like a gasoline fueled car will sputter and eventually corrode on diesel fuel.


    Predisposition vs. Disease
    A genetic predisposition to celiac only becomes a disease (e.g. celiac disease or one of the non-celiac gluten sensitivity enabled conditions)[5] if the body’s inability to digest gluten and certain other grain proteins is ignored at the expense of the immune system.[6]
    In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a gluten-free diet and lifestyle.
    An European Union et al commissioned research paper concluded:

    The environment clearly plays a crucial role in the development of celiac disease: No gluten, no disease!….
    …Because gluten is present in relatively large amounts in a variety of common food products, the daily gluten intake in a Western diet is high. In combination, we see that every HLA-DQ2– and/or -DQ8–positive individual is exposed to a large repertoire of immunogenic and abundant gluten peptides, and this may be an important factor determining disease development. There is, at present, no evidence linking additional environmental factors to celiac disease. [7]


    Big Business: Catering to a Gluten Free Diet
    The facts are everywhere and are illustrated further by these research abstract numbers posted on PubMed:
    18,565 on “celiac disease” (607 alone in 2012 – Jan. to Jly.) 9,689 on “gluten” (385 in 2012 – Jan. to Jly.) 3,447 on “glutenfree” (192 in 2012 – Jan. to Jly.) In addition, 38,878 abstracts deal with wheat research, whereof 1,862 in 2011, and 1,384 in 2012 to date (Jan. to Jly.).
    Clearly: $6.1bn spent 2011 on gluten-free foods in the USA—and a 30% growth from 2006 to 2010 in Canada to $2.64bn—indicate “Big Business” complete with the risk of missed, omitted, and mis-information for the goal of promoting greater consumption of gluten-free processed foods.
     
    The Challenge
    Our present naming confusion, therefore, may end up fuelling potential manipulation and mismanagement of the patient and consumer from the part of medical, pharmaceutical, supplement, and food industries.
    Even the above mentioned latest attempt at coordinating nomenclature and distinction between non-celiac and/or celiac gluten sensitivity brings with it several major flaws and challenges:
    It may take years for new naming conventions to become accepted throughout the international medical and dietary community. Recognizing a term such as "gluten-related disorders" or “non-celiac gluten sensitivity” calls for a total revamping of our medical and diagnostic systems in order for the large number (so far about 160) of autoimmune and other disorders to be recognized as gluten-related.   In addition, future questions will arise as research identifies and confirms more genetic links:
    Already, clinic practice shows that some of the "celiac" patients, previously diagnosed by positive intestinal biopsy[8] and serological findings now, on genotyping[9], turn out to carry "non-celiac" and not “celiac” gluten sensitivity alleles. Where does this leave such individuals on the traditionally used "celiac disease" versus "gluten-related disorder" specter?
    Clearly, despite good intention for a more precise naming distinction, it appears that additional work is needed in order to entrench new medical terminology and disease pictures.
     
    Conclusion
    Until then, whenever one of my patients receives a positive HLA gene test, I will adhere for clarity’s sake to the terms of “non-celiac” and/or “celiac gluten sensitivity” (NCCGS).
    This terminology refers solely to the underlying toxic effect of gluten and prevents a wrong implication of predisposition=disease diagnosis. Instead, “non-celiac and/or celiac gluten sensitivity” will simply point to the inherited underlying predisposition to specific additional triggers and complications if exposed to gluten.
    Most importantly, I will make sure to instill in my patients that disease is not the inevitable outcome of their genetic predisposition, and that a 100% gluten-free diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated autoimmune-based conditions and disorders, both for non-celiac and for celiac gluten sensitivity related disorders.

    [1] http://www.ncbi.nlm.nih.gov/pubmed/22351716  Ann Intern Med. 2012 Feb 21;156(4):309-11. Nonceliac gluten sensitivity: sense or sensibility?
    [2] http://www.ncbi.nlm.nih.gov/pubmed/22345659  Gut. 2012 Feb 16. [Epub ahead of print] The Oslo definitions for coeliac disease and related terms.
    [3] http://www.ncbi.nlm.nih.gov/pubmed/19940509  Int Arch Allergy Immunol. 2010;152(1):75-80. Epub 2009 Nov 24. Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease.
    [4] http://www.ncbi.nlm.nih.gov/pubmed/22123644  Curr Opin Gastroenterol. 2012 Mar;28(2):104-12.  Advances in coeliac disease.
    [5] See future articles posted in these pages...  
    [6] http://www.ncbi.nlm.nih.gov/pubmed/21787225  Int Rev Immunol. 2011 Aug;30(4):197-206.  Important lessons derived from animal models of celiac disease.
    [7] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC209453/?tool=pmcentrez  J Clin Invest. 2001 November 1; 108(9): 1261–1266. doi:  10.1172/JCI14344  PMCID: PMC209453  Interplay between genetics and the environment in the development of celiac disease: perspectives for a healthy life.
    [8] http://www.ncbi.nlm.nih.gov/pubmed/22742547  Arch Pathol Lab Med. 2012 Jul;136(7):735-45.  An update on celiac disease histopathology and the road ahead.
    [9] http://www.ncbi.nlm.nih.gov/pubmed/21593645  J Pediatr Gastroenterol Nutr. 2011 Jun;52(6):729-33.  HLA-DQ genotyping combined with serological markers for the diagnosis of celiac disease: is intestinal biopsy still mandatory?

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    cyclinglady is the one who gets chronic autoimmune urticaria. I sure am glad I don't! Keeping my fingers crossed. I have 3 AI diseases & hope that's the end count.
    Hello Everyone, Hope this finds you well. I'm wondering if anyone knows of a compassionate and caring Doctor may it be Functional or Medical etc. in the Vancouver area? I have contacted the Celiac groups, however they are not allowed to release names. Thank you kindly in advance for your time. Happy Healing.  
    All of Schars products are gluten-free.  They don’t make any that are not.
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