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  • Jefferson Adams
    Jefferson Adams

    Celiac Disease Statistics

    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):

    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.



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    Thank you so much for having this website up, I am doing a big project on how celiac disease is a massive public health issue and this website has helped so much with statistics and general information!

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    Article does not mention effects of celiac disease on the brain (depression,ADHD, etc.)

    Totally - I also am curious if ADHD link is more recent or not.

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    While I understand that 1 in 133 is the "accepted" number it will GREATLY increase awareness.

    If the number is actually UPDATED to reflect the correct percentages...1 in 75 vs. 1 in 133.

     

    They also "accepted" that the world was flat! LOL...

    It is time for new data to support the gluten-free labeling measures!

    Since the "data" being used to support this is well over 25 YEARS old.

    (These were the EXACT same numbers used when I was diagnosed 25 years ago!)

     

    It is just as misconceived that you can not be a celiac unless your "skinny" .

    In order to further this cause in labeling awareness NEW data should be involved.

    As it is indeed more prevalent as we are seeing with more people being "finally" diagnosed

    daily. The number of these cases support this new data!

    Thus showing and supporting the need for CORRECT labeling.

    As well as new symptom "guidelines" need to be in-acted by the AMA so it does

    NOT take 10 years on average to be diagnosed. ( Thank goodness for you and your center!)

     

    Using out dated numbers is NOT furthering the cause as it has still taken 25 years.

    To even get a labeling initiative had the numbers been Correct and up to date this would have

    indeed been in effect years ago! It is time for all Celiac awareness groups to get together on this.

    Submitting data that shows that this is indeed just as prevent in many ways as other conditions.

    The higher the actual numbers the better the response and support for your program as well as other programs in the country.

     

    Kind regards,

     

    Estelle

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    Thank you so much for having this website up, I am doing a big project on how celiac disease is a massive public health issue and this website has helped so much with statistics and general information!

    I am too and I honestly believe this was the best article I read. Lots of useful information!

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    It's hard to get good tasting gluten-free food. Better labeling would be a help.The quantity and quality of gluten-free food is improving as more of us are being properly diagnosed. Six years for my finding.

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    Excellent article and updated statistics from the National Institute of Health.

    It would be very helpful if you would reference your articles so that original sources of the information could be followed up.

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    Somewhat helpful - somewhat misleading. From my readings, I do not believe there is a "full recovery from celiac disease." Symptoms can be relieved and absent yet the damage to the small intestines is never repaired. It is imperative to be diagnosed and, then if you have celiac disease, eliminate all foods with gluten forever. There is, to date, no cure.

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  • About Me

    Jefferson Adams 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 biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as 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.

  • Related Articles

    Scott Adams
    Celiac.com 02/08/2007 - There is presently no cure for celiac disease. Celiac patients can vary greatly in their tolerance to gluten. Some patients may not notice any symptoms when they ingest tiny amounts of gluten, for example if something they ingest has been cross-contaminated, while others suffer pronounced symptoms after ingesting even the slightest amount of gluten. Avoiding gluten is crucial
    A life-long diet free of gluten is the standard treatment for celiac disease. To manage the disease and prevent complications, its essential to avoid all foods that contain gluten. That means it is crucial to:
    Avoid all foods made with wheat, rye, or barley. Including types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others. Avoid oats, at least during initial treatment stages, as the effects of oats on celiac patients are not fully understood, and contamination with wheat in processing is common. So, its best to eliminate oats at least until symptoms subside and their reintroduction into the diet can be fairly monitored and evaluated. Avoid processed foods that may contain hidden gluten. Wheat is commonly used in many processed foods that one might never suspect. A few examples include: candy bars canned soup canned meat energy bars ketchup ice cream instant coffee lunch meat mustard pastas processed meat sausages Avoid capsules and tablets that contain wheat starch, which is a common used binding agent in their production. Gluten is also commonly found in many vitamins and cosmetics, such as lipstick. Avoid beer (wine, brandy, whiskey and other non-wheat or barley alcohols are okay). Eat a diet rich in fish, fresh meats, rice, corn, soybean, potato, poultry, fruits and vegetables. Avoid milk and other dairy products, as it is common for patients with untreated celiac disease to be lactose intolerant. Successful treatment often means dairy products can be slowly reintroduced into the diet over time. Identify gluten-free foods. Because a gluten-free diet needs to be strictly followed, and because food ingredients may vary from place to place and even over time for a given product, it is important to always read the label. Consider purchasing commercial listings of gluten-free foods and products. For specific advice on adopting, shaping and maintaining the gluten-free diet that is right for you, you may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet. Always read labels, as ingredients often change over time and products that that were once gluten-free may be reformulated and now include gluten in some form. Products that are gluten-free in one country are sometimes not gluten-free in another. Most patients who remove gluten from their diets find that their symptoms improve as inflammation of the small intestine begins to subside, usually within several weeks. Many patients who adopt a gluten-free diet report an improvement within 48 hours.
    Results of a gluten-free diet can be especially dramatic in children with celiac disease. Not only does their diarrhea and abdominal distress usually subside but, frequently, their behavior and growth rate are often markedly improved.
    A reappearance of intestinal villi nearly always follows an improvement in symptoms.
    In younger people, the villi may complete healing and regrowth in several months, while in older people, the process may take as long as two to three years.
    In cases where nutritional deficiencies are severe, celiac patients may require vitamin and mineral supplements to help bring about a healthier vitamin profile: folic acid and B12 for patients with anemia due to folate or B12 deficiency; vitamin K for patients with an abnormal ProTime; calcium and vitamin D supplements for patients with low blood calcium levels or with osteoporosis. For all such cases, individuals should consult their health professional.
    Skin lesions common in patients with dermatitis herpetiformis often improve with adherence to a gluten-free diet.
    For patients with celiac disease, the importance of maintaining a life-long diet free of gluten can hardly be over-stressed. Research indicates that only half of those patients who have had celiac disease for at least 20 years were following a strict gluten-free diet. Up to 30% of those patients showed evidence of bone loss and iron deficiency. These are but a few of the long-term consequences for celiac patients failing to follow a gluten-free diet.
    health writer who lives in San Francisco and is a frequent author of articles for Celiac.com. 

    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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    He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
    Knitty Kitty, Here is the link to the Old research. I think you will find it interesting. ..I know you used Niacin to treat your itching with your DH. https://core.ac.uk/download/pdf/82674034.pdf see Case IV but read them all when you get the chance. they review 12 case studies. I hope this is helpful but it is not medical advise. Posterboy,
    Alaskaguy, Like Knitty Kitty I am one of the researchers on this forum.  she has provide you good links. So I wanted to chime in and share some research I found recently that might help you....entitled "Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide." This is recent research too which can be hard to come by to find something directly that might help you. https://www.ncbi.nlm.nih.gov/pubmed/30390734 Also see this thread about
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