• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Member Statistics

    77,681
    Total Members
    3,093
    Most Online
    Roxanne Bracknell
    Newest Member
    Roxanne Bracknell
    Joined
  • 0

    Are Estimates of Celiac Disease Rates Too High?


    Jefferson Adams
    Image Caption: A new review questions estimates of celiac disease rates.

    Celiac.com 01/25/2010 - A new systematic review by Italian researchers suggests that many studies showing rising or elevated rates of celiac disease are not backed up by clinical evidence, and are therefore suspect. The researchers say that rates of celiac disease are being over-estimated, mainly because tissue transglutaminase antibodies were the only diagnostic tool. As a result, many cases labeled as celiac disease in medical studies are not confirmed by biopsy.


    Ads by Google:




    ARTICLE CONTINUES BELOW ADS
    Ads by Google:



    By the 1990s, celiac disease, which had been considered a rare condition, showed a marked increase, according to medical literature. Recently, researchers have projected celiac disease rates as high as 1 out of 100 people in the Western world.

    To better understand the true prevalence of celiac disease in the general population that drove the researchers conducted their systematic review of published papers.

    The research team included Federico Biagi, Catherine Klersy, Davide Balduzzi, and Gino Roberto Corazza, affiliated with the Coeliac Centre/First Department of Internal Medicine, and the Biometry and Clinical Epidemiology at the Fondazione IRCCS Policlinico San Matteo at the University of Pavia, Italy.

    They found that the overall prevalence of celiac disease in the general population appears to be around 1/160 people, but this varies widely according to the diagnostic criteria used in the original papers. Figures also vary by region and ethnicity, as has been well-established.

    Once studies were adjusted to include only biopsy-proven cases, rates of celiac disease remained within the historical averages, and show no signs of sharp rise or increase over time.

    Their initial search of medical literature for papers in English on celiac disease epidemiology since 1990 yielded 519 papers. Once the team eliminated studies with small sample sizes, and studies set up in primary care or endoscopy units, they were left with 40 papers focusing on the prevalence of celiac disease in the general population, plus an additional paper published in the present issue.

    The team realized that differences in study type, populations, diagnostic criteria, and sample sizes made a proper meta-analysis impossible. However, they divided and regrouped the papers according to their various characteristics and then classiï¬ed them based on the diagnostic criteria used in the original papers.

    They also determined whether there were any significant differences in rates when different types of populations, sample sizes, years of publications, geographic regions, and diagnostic criteria were assessed.

    The team was surprised to find that just four histologically confirmed studies suggesting a prevalence of celiac disease higher than 1/100.  On the other hand, seven biopsy-based papers suggested a prevalence lower than 1/400.

    Prevalence obtained with tissue transglutaminase antibodies only was markedly higher than that obtained through a histological diagnosis, while post-hoc comparisons showed that the prevalence obtained with TTA was signiï¬cantly higher than that obtained using histology or EMA.

    From these results, the team concludes that the prevalence of celiac disease in the general population has been over-estimated, mainly due to tissue transglutaminase antibodies being used as the only diagnostic tool.

    Source:

    0


    User Feedback

    Recommended Comments

    Guest Kit Kellison

    Posted

    Dr. Fasano can be credited for the current gold-standard of celiac disease diagnosis confirmation using endoscopy. Now that he's backing off that, saying that sera confirmation appears to be enough...where does that leave this estimation?

    Share this comment


    Link to comment
    Share on other sites
    Guest VICKIE

    Posted

    I was told that the only true exact diagnosis was biopsy. Serology in my case every time did not show celiac disease, however biopsy with a second opinion did, on the other hand a second biopsy showed leukocytic colitis and then my doctor told me I only had IBS. So what is the real truth in this matter?

    Share this comment


    Link to comment
    Share on other sites
    Guest a j ponder

    Posted

    This is a rubbish study - the biopsy has repeatedly been shown to be a crap tool to assess the severity of coeliac disease - and bunching a handful of studies together proves absolutely nothing when populations have such markedly different rates of coeliac disease (as was actually stated in the article). And this makes complete sense when you look at the genetic markers which vary considerably from population to population. On top of which doctors are stupid - they treat their patients like idiots - without even realising that they're ruining their own tests by not clearly ensuring the patient is ingesting significant amounts of gluten in the lead up to the test. On top of which what person in their right mind would let a doctor biopsy them after they've had a blood test that's 99- 100 percent specific. Yes, the blood test is a terrible screening test - but it is because it misses about 20% of full blown coeliacs - not because it is over-diagnosing the condition. So Viki ignore your blood test - you have celiac - because of this high false negative rate a positive biopsy trumps a negative blood test every time - in the same way that a positive blood test should trump a negative biopsy - because even good doctors can miss the specific patch that shows coeliac damage - and bad doctors and inexperienced doctors have a success rate that is astoundingly low.

     

    So the whole "Gold standard" thing is a load of croc designed to lower rates of coeliac - not only does it increase the number of people opting out of testing but there's also a reasonable chance of a false negative further artificially reducing the "coeliac" population. To get a real handle on all this we need to roll on AGA testing as the traditional concept of "Coeliac" is being proven to be more and more a construct of the belief that the condition of coeliac is rare - instead of the product of scientific evidence.

    Share this comment


    Link to comment
    Share on other sites
    Guest Sydney

    Posted

    This is a rubbish study - the biopsy has repeatedly been shown to be a crap tool to assess the severity of coeliac disease - and bunching a handful of studies together proves absolutely nothing when populations have such markedly different rates of coeliac disease (as was actually stated in the article). And this makes complete sense when you look at the genetic markers which vary considerably from population to population. On top of which doctors are stupid - they treat their patients like idiots - without even realising that they're ruining their own tests by not clearly ensuring the patient is ingesting significant amounts of gluten in the lead up to the test. On top of which what person in their right mind would let a doctor biopsy them after they've had a blood test that's 99- 100 percent specific. Yes, the blood test is a terrible screening test - but it is because it misses about 20% of full blown coeliacs - not because it is over-diagnosing the condition. So Viki ignore your blood test - you have celiac - because of this high false negative rate a positive biopsy trumps a negative blood test every time - in the same way that a positive blood test should trump a negative biopsy - because even good doctors can miss the specific patch that shows coeliac damage - and bad doctors and inexperienced doctors have a success rate that is astoundingly low.

     

    So the whole "Gold standard" thing is a load of croc designed to lower rates of coeliac - not only does it increase the number of people opting out of testing but there's also a reasonable chance of a false negative further artificially reducing the "coeliac" population. To get a real handle on all this we need to roll on AGA testing as the traditional concept of "Coeliac" is being proven to be more and more a construct of the belief that the condition of coeliac is rare - instead of the product of scientific evidence.

    A j, you sound like a cranky bitter person, upset with your diagnosis and hoping the rest of the world is just as screwed as you are. A high Ttg is not specific to celiac and can be indicative of other autoimmune disorders. Why would someone with celiac show no immune response in their blood? Why, unless the celiac is very recently activated, would someone with the disease show no sign of damaged villi? There is no big conspiracy theory here! Why the hell would doctors want to "artificially lower" celiac rates?? You need to accept the fact that doctors aren't all out to get us, and that if someone says they have celiac and their doctor says they don't, they have every right to go to another doctor or cut gluten anyway. Ever heard of gluten sensitivity? Just because gluten makes someone feel bad does not mean they have celiac disease! Accept your diagnosis and stop acting like the world is against you. An increased number of gluten free products on the shelves and increased volume of research popping up looking for cures and treatments shows that people are taking this disease seriously, and no conspiracy is at play.

    Share this comment


    Link to comment
    Share on other sites


    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • Ads by Google:

  • About Me

    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

  • Popular Contributors

  • Ads by Google:

  • Who's Online   6 Members, 0 Anonymous, 408 Guests (See full list)

  • Related Articles

    Tina Turbin
    Celiac.com 11/30/2011 - Researchers have been talking about it for some time, raising the hopes of the celiac community: a drug to help relieve us from the harmful effects of gluten exposure. Celiac patients are closer than ever to having such a drug on the market, as Alvine Pharmaceuticals has announced that their drug ALV003 has shown promise in a clinical trial by reducing gluten-triggered harm in people with celiac disease.
    Celiac disease is an autoimmune reaction triggered by exposure to gluten, a protein found in wheat, barley, and rye, that causes the immune system to attack the small intestine, interfering with the absorption of nutrients and leading to malnutrition and a variety of other symptoms. The disease currently has only one treatment, which is non-drug: the gluten-free diet. By eliminating gluten completely from the diet, most celiac patients can heal their small intestine. There is currently no other drug on the market that can help relieve the symptoms of celiac disease or the intestinal damage it can cause.
    Now Alvine Pharmaceuticals, which is focused on developing biopharmaceuticals for autoimmune inflammatory diseases such as celiac disease, has reported favorable results for a trial with their drug ALV003, which was developed to lessen mucosal injury in the intestine caused by gluten exposure in well-controlled celiac patients.
    A control group study was conducted that collected data from 34 celiac patients. After both the active drug group and placebo group ingested two grams of gluten on a daily basis for six weeks, "The group with the placebo reported higher incidence of 'non-serious adverse events' (code for GI symptoms)," Triumph Dining reported. "They also had significantly more mucosal injury in their small intestines, as measured by biopsy data."
    ALV003 works by breaking down the gluten molecule into nontoxic parts. (Alvine Pharmaceuticals explains more specifically how the drug works on their website, AlvinePharma.com.) The drug is intended to help alleviate the gastrointestinal and other symptoms associated with cross-contamination, incorrect or misleading "gluten-free" labeling, and exposure to gluten caused by carelessness or imprudence. Even when celiac patients take care to maintain a strict gluten-free, it's difficult to stay completely away from gluten. That's why, according to coordinating investigator of the latest ALV003, Markku Maeki, M.D., chair and professor of pediatrics at the University of Tampere and Tampere University Hospital in Finland, "New non-dietary treatment options that can either eliminate, or meaningfully reduce the gluten present in an attempted gluten-free diet are needed."
    Currently celiacs have no drug options to help alleviate their symptoms. "These results are groundbreaking," said Professor Maeki, "as they demonstrate for the first time, in a controlled clinical trial, that a drug has the potential to diminish gluten-induced injury in celiac disease patients."
    According to Triumph Dining, "After Phase 3 trials, so long as results remain promising, ALV003 will enter Phase 2b trials soon; after that come Phase 3 trials and (hopefully) submission to the FDA for approval." The release of ALV003, should results remain favorable, will no doubt bring relief to many members of the celiac community.


    Jefferson Adams
    Celiac.com 07/26/2013 - There are a number of highly specific and sensitive blood tests that can be used in diagnosing celiac disease; however histological examination of a biopsy taken by endoscopy remains the gold standard for celiac diagnosis.
    However, not every patient wants to undergo an endoscopy, and many will happily undergo additional blood tests to avoid or delay endoscopy.
    In an effort to help clinicians make accurate celiac diagnosis without endoscopy and biopsy, the company Nestec S.A. of Vevey, Switzerland, a research and testing subsidiary of Nestlé has obtained U.S. Patent No. 8,409,819, entitled "Methods to predict risk for celiac disease by detecting anti-flagellin antibody levels."
    The inventors have shown that a subset of at risk patients had elevated anti-CBir1 antibodies and that this correlated with HLA-DQ2.5 and HLA-DQ8 genotypes.
    The inventors showed that a group at risk patients have elevated anti-CBir1 antibodies that correlate with HLA-DQ2.5 and HLA-DQ8 genotypes.
    Their patent contains two independent claims, numbers 1 and 9, each of which describes a method to aid in predicting whether a patient who is EMA positive, or who has a relative with celiac disease, is at risk for developing celiac disease.
    Each method relies on the CBir1 flagellin antigen, specifically the N-terminal residues 1-147, to determine whether or not a sample from an at-risk patient contains anti-CBir1 flagellin antibodies.
    Flagellin is a part of what makes up bacterial flagella, the molecular mechanism that drives the propeller-like motion in bacteria. The inventors theorize that individuals at risk for celiac disease may have an aggressive immune response to resident bacterial proteins, in this case flagellin.
    This method for predicting celiac disease risk may help clinicians to diagnose patients who wish to avoid endoscopy, or who wish additional tests before doing so. The new patent also notes that the method might help to identify patients at risk of developing celiac disease before any symptoms are present.

    Jefferson Adams
    Celiac.com 06/26/2014 - Imagine being able to go to a party, or a restaurant, and test any food on your plate for gluten.
    A company called 6SensorLabs is developing a gluten sensor based on existing protein sensing technology that is already commercially available and proven to work. The company is looking to design a gluten test that can be used with all types of food.
    The portable test would work by placing a sample of food would be placed in a disposable pod and placing the pod in a sensor.
    Once activated, the device would tell you, in two minutes or less, if the food sample contained any gluten over the FDA standard of 20 ppm gluten or more.
    The sensor could also be used to detect gluten in any packaged foods.
    The sensor is designed to test a specific section of food on your plate, or a sauce, soup or liquid. It would not be able to detect traces of gluten that might be hiding somewhere else on your plate.
    While the product would have its limits in this respect, it would give users the ability to detect gluten in many cases.
    Would you want such a tool? Would it be helpful for you?

    Jefferson Adams
    Celiac.com 11/13/2014 - An anonymous donor has made a $2 million dollar contribution to the National Foundation for Celiac Awareness (NFCA).
    The donation is the largest in the organization's history, and will support the NFCA’s mission is to raise celiac disease awareness, promote research and testing testing, and improve the quality of life for celiacs eating a gluten-free diet.
    Since 2003, the NFCA has worked to promote celiac disease research and awareness.
    The grant will help to ensure support for the NFCA as it looks to increase research and awareness into the future.
    Stay tuned for updates on how the NFCA supplements or expands its ongoing efforts on behalf of people with celiac disease and gluten intolerance.

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.