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  • Jefferson Adams
    Jefferson Adams

    Just How Common are Celiac Disease and Gluten Sensitivity?

    Reviewed and edited by a celiac disease expert.

    Caption: Photo: CC--Karen O'D.

    Celiac.com 08/19/2012 - In an effort to assess rising rates of celiac disease, and an increasing popularity of gluten-free food products, a team of researchers recently conducted a survey. The research team included Alberto Rubio-Tapia, Jonas F. Ludvigsson, Tricia L Brantner, Joseph A. Murray and James E. Everhart.

    Photo: CC--Karen O'D.Their data indicate that about 1.8 million Americans have celiac disease, while another 1.4 million remain undiagnosed. Surprisingly, their results show that around 1.6 million people have adopted a gluten-free diet despite having no official diagnosis.

    Some of these people likely have celiac disease, while others likely belong to a large group of people who don't actually have celiac disease, but who suffer bloating and other celiac symptoms and seem to be helped by avoiding gluten; people many doctors are now officially describing as 'gluten sensitive.'

    Once a controversial term, the existence of gluten sensitivity has been supported by several studies, among them, a very small but often-cited Australian study.

    In that study, volunteers with gluten reaction symptoms received a gluten-free diet or a regular diet for six weeks, without knowing which one. At the end of the period, those who ate gluten-free had fewer problems with bloating, tiredness and irregular bowel movements.

    Clearly, the current data tell us that "there are patients who are gluten-sensitive," said Dr. Sheila Crowe, a San Diego-based physician on the board of the American Gastroenterological Association.

    The debate is now shifting to the question of how many people suffer from gluten sensitivity, she added. Because gluten sensitivity lacks the clinical markers of celiac disease, that question may not be answered anytime soon.

    Certainly, more and more people without any official diagnosis are turning to gluten-free diets as a way to lose weight, or as part of low carb and/or 'paleo' diets. Those people, together with celiacs and those with gluten intolerance are helping to drive the estimated $7 billion that will be spent on gluten-free.

    There has also been increasing concern among researchers that that many or most people have some kind of gluten sensitivity. Stay tuned for more news on this and other gluten and celiac-related topics.

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    The focus should be on gluten syndrome! Please investigate the brilliant and progressive work of Dr. Rodney Ford from New Zealand. Concentrating on celiac disease is like missing the forest for the trees or only paying attention to the tip of the iceberg. Everyone under the huge umbrella of gluten syndrome must follow a zero gluten lifestyle... no exceptions. Proactive prevention is the key to optimal health and well being!

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    Denise's comment is 'right on target!' My mother and sister have celiac genes. I, however, have 2 genes pre-disposing to gluten sensitivity. They are 'non-reactive' so far. On the other hand, I projectile vomited within 20 minutes of eating - for over 11 years! I had the usual tests - which all came up 'negative.' If I place a bucket in the ocean, and when I pull it out it contains no fish - am I to ascertain that there are 'no fish in the ocean?' Additionally, I cleaned the family toaster last Christmas, after being gluten-free for 7 months, didn't think anything of it, and promptly projectile vomited - without 'consuming' anything! "They" need to be studying ALL people who react to gluten - not just the ones identified as having the celiac disease genes! Maybe they would actually learn something to benefit the good of the group! Additionally, I had 5 colonoscopies with biopsy and 5 endoscopies with biopsy - which were all negative! It was the DNA test that identified the REAL problem! And, it was inexpensive, non-invasive, convenient and as far as I am concerned the REAL GOLD STANDARD for identifying both celiac disease as well as gluten sensitive genes.

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    I agree. Once the endoscopic biopsy came back negative I was told I have irritable bowel syndrome and need to eat more fiber. My family doctor actually said that's the usual diagnosis when they can't figure out what the real issue is... An Applied Kinesiologist was the one who told me that my stomach issues and vertigo were caused by wheat. I went gluten-free and the stomach issues and vertigo were gone. A couple of months later, I thought, what the heck, I really miss pizza. So I ate pizza and regretted it. I have not deliberately put another gluten-free item in my mouth! Though I have been glutened while eating out so I'm rather paranoid about eating anything I didn't prepare.

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    I am one of those who has not been officially diagnosed (had an endoscopy, which came up negative but have not had the DNA testing) but whenever I eat gluten I have a myriad of symptoms such as brain fog, lack of concentration and no energy, joint pain and digestive irritability. Why do that to myself? Just because a doctor doesn't know how to diagnose something doesn't mean there isn't something there. I liked Eloise's comment above "If I place a bucket in the ocean, and when I pull it out it contains no fish - am I to ascertain that there are no fish in the ocean?" Of course not! Good analogy.

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    Denise's comment is 'right on target!' My mother and sister have celiac genes. I, however, have 2 genes pre-disposing to gluten sensitivity. They are 'non-reactive' so far. On the other hand, I projectile vomited within 20 minutes of eating - for over 11 years! I had the usual tests - which all came up 'negative.' If I place a bucket in the ocean, and when I pull it out it contains no fish - am I to ascertain that there are 'no fish in the ocean?' Additionally, I cleaned the family toaster last Christmas, after being gluten-free for 7 months, didn't think anything of it, and promptly projectile vomited - without 'consuming' anything! "They" need to be studying ALL people who react to gluten - not just the ones identified as having the celiac disease genes! Maybe they would actually learn something to benefit the good of the group! Additionally, I had 5 colonoscopies with biopsy and 5 endoscopies with biopsy - which were all negative! It was the DNA test that identified the REAL problem! And, it was inexpensive, non-invasive, convenient and as far as I am concerned the REAL GOLD STANDARD for identifying both celiac disease as well as gluten sensitive genes.

    If it took me 7 months to clean my toaster, I may projectile vomit, as well. I'm not dismissing anyone's sensitivities, just be careful how you come off.

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    Gluten intolerance is much more likely to be an effected symptom of some deeper underlying dietary concern. The most likely candidates I would hypothesize are the ones that cause inflammation. They also happen to be extremely pervasive in the American diet. These are refined sugars, processed cooking oils, trans fats, dairy products, feedlot meat (red meat in general), alcohol, and processed grains (probably your main source of gluten anyways). Inflammation causes the white blood cells in your body to attack things they are not supposed to - gluten being one of those things.

     

    The problem I see here is that we have a lot of people putting the cart before the horse on this one. People have been digesting vital wheat gluten (seitan) for over 2,000 years and its not until recently that all of a sudden people are getting sick. All of these other culprit foods are more likely to be the cause of most peoples discomfort and pain and yet the research seems to fall short on this. Reduce the gluten - especially you're highly refined and processed grains - but also check your food for sugars and processed oils. Go vegetarian, or at least 80%. Critically look at your WHOLE diet and not just one small part of it.

     

    I myself am vegan and I read every label and cook most of my own food. I haven't had the common cold or a flu since I left meat behind and started being aware of what I ate. Its not easy but I promise that the effort you spend now is equal to the effort you spend later at the doctor.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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