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  • Jefferson Adams
    Jefferson Adams

    Worldwide Variation in the Frequency of Celiac Disease and Changes Over Time

    Celiac.com 09/16/2013 - Until recently, researchers thought celiac disease was mainly a problem in Northern Europe and Australasia, and uncommon in North America and the Middle East. However, with better data, researchers now regard celiac disease to be equally common in all these places.

    Celiac disease is still generally seen as rare in Asia and Sub-Saharan Africa, but a team of researchers wanted to get a better idea of geographical differences and time trends in the frequency of celiac disease.

    The research team included J. Y. Kang, A. H. Y. Kang, A. Green, K. A. Gwee, and K.Y. Ho. They are affiliated with the Department of Gastroenterology, St George's Hospital, London, UK, the Yong Loo Lin School of Medicine at the National University of Singapore, and with the Department of Gastroenterology and Hepatology at the National University Health System in Singapore.

    To get the data that would help them to compare geographical differences and time trends, the team conducted Medline and Embase searches covering a period from 1946 to 1980, using the key words: coeliac disease or celiac disease + prevalence, incidence or frequency.

    Their data showed significant differences between and within countries in the prevalence and incidence of celiac disease. For example, in all of reported English medical literature, there have been only 24 ethnic Chinese and Japanese patients with celiac disease.  Of celiac-associated HLA DQ antigens, DQ2 occurs in 5–10% of Chinese and sub-Saharan Africans, compared to 5–20% in Western Europe. DQ8 occurs in 5–10% of English, Tunisians and Iranians, but in less than 5% of Eastern Europeans, Americans and Asians.

    Rates and overall numbers of both clinically and serologically diagnosed celiac disease have risen in recent years. Celiac disease is increasing in frequency, with significant geographical differences.

    The team's geographical and temporal differences seem genuine, but a large number of hypothesis and lack of diagnostic facilities have made it difficult to reach any solid conclusions.

    Although few cases have been found in Asia and Sub-Saharan Africa, there is a significant prevalence of HLA DQ2 and wheat consumption is about the same as in Western Europe.

    It is possible that celiac disease may become more common in these countries in the future.

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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 05/12/2003 - Families that have had two or more relatives diagnosed with Celiac Disease or Dermatitis Herpetiformis are being sought for a study to identify factors associated with the development of celiac disease. The goal of the study is to find genes that may predispose individuals and their relatives to develop the condition. The study has been funded for the last six years by a grant from the National Institutes of Health.
    Discovery of a gene for Celiac Disease could eventually lead to better diagnosis, treatment, and possibly even prevention of celiac disease. Ultimately, the research could result in development of preventive strategies and therapies for individuals who are at high risk for the condition. It is estimated that 1 in 200 people in the United States suffer from Celiac Disease.
    We are looking for individuals with proven celiac disease who have siblings or extended family members who have also been diagnosed with the disease. The study will accept families where at least two individuals in the same family, with the exception of simple parent-child pairs, have been diagnosed with celiac disease or dermatitis herpetiformis. Study participants will be asked to provide some family medical history and a small blood sample for genetic analysis. Participants will also receive a free Endomysial Antibody test for screening for Celiac Disease.
    For further information, please contact Linda Steele at the City of Hope at (626) 471-9264 or toll-free at (800) 844-0049 or e-mail celiacstudy@coh.org.
     

    Scott Adams
    Summary prepared by Nancy Kloberdanz as a joint effort of all the national celiac organizations GIG, CDF, CSA/USA, and ACS.
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    The second goal was to increase awareness and educate about our particular disease. We accomplished this very well. On March 19, 2001, celiac disease had the largest patient representative group at the DDNC, and reached nearly 20 representatives. Members of DDNC and NIH were very impressed by our representation of celiac disease. The following week we had 3 representatives attend the NIAMS Advocacy efforts. While visiting our Congress people we had the opportunity to tell our stories and explain how legislative decisions impact us individually, as well as share some facts about celiac disease/DH. Fact Sheets and other materials were left in each congressional office that we visited.
    DDNC represents many gastrointestinal disease organizations. We are pleased that all the national celiac organizations are members of this coalition. NIAMS and CPA-SDR (Coalition of Patient Advocates for Skin Disease Research) are the coalition groups that the Gluten Intolerance Group (GIG) is a member of, in order to represent persons with dermatitis herpetiformis. Work by coalitions such as these is very important. These coalitions are strong forces with great influence in the medical areas they represent.
    Patient advocacy work is important, however, you should also know that nonprofit groups (501c3) are severely limited by law in the amount of funding that can go toward advocacy work. In this regard we need your help, please:
    Write to your Congress people about your disease and encourage them to support the NIH budget increase. Send them copies of the Fact Sheet. Visit them when they are at home (usually weekends and Mondays). Join the national celiac organizations in representing a united, common voice. We are strongest when we speak as one. The more voices saying the same thing the better. Let your national group(s) know you want to participate in these activities. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America(CSA/USA) were formally represented. DDNC and NIAMS groups are often invited to participate in advocacy work throughout the year. Plan to come to Washington DC next year. Often Congress people are very busy and sometimes selective in whom they see. They want to hear from their constituents. An example was a Senator from California who wanted to see constituents from her district. If there had not been a representative from California on a team, that senator would not have heard about Celiac Disease. We need representatives from as many states as possible. Although, our lobbying efforts are at the mercy of the Congress schedule, these events often take place in March or April. Offer to testify. Testifying before Budget and Health Committees is by written invitation only. First we must write letters asking permission to testify and then wait to be approved. It is a wonderful experience to express our story in this manner. Children and people severely affected by the disease are the most influential.

    Scott Adams
    A little boy with a severe seizure disorder had his wish to have a special bike of his own granted through national children’s charity Kids Wish Network.
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    With an amazing amount of local support from the Westminster Presbyterian Church and the Champaign Firefighters Local 1260, Joshua’s Kids Wish Network wish coordinator arranged for a special side by side “trike” to be sent directly to his house.
    Janet says that her son Joshua took to the brand new side by side bike immediately.
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    According to Janet, “It’s going to grow with him. It’s a possibility for him to learn to pedal… he’s even put his hand on the handlebars several times, imitating his grandpa. He’s interested and it’s wonderful.”
    Kids Wish Network would like to thank the following for helping to make Joshua’s wish extra special: Westminster Presbyterian Church, Champaign Firefighters Local 1260 and the Worksman Trading Corporation.
    Kids Wish Network is a nationally recognized non-profit organization dedicated to infusing hope, creating happy memories, and improving the quality of life for children in crisis. Every child deserves a chance at happiness; a wish is just a way of bringing them that joy. If you would like to sponsor a child’s wish or if you know a child who is suffering from a life-threatening illness and may be in need of Kids Wish Network’s wish granting services, please call 727-937-3600 or toll free 888-918-9004. For more information on Kids Wish Network, visit their website at www.kidswishnetwork.org


    Tina Turbin
    Celiac.com 10/12/2011 - According to recent estimates, three million Americans suffer from celiac disease—approximately 1% of the population, and only three percent of them have to this writing been correctly diagnosed. As startling as that sounds to us all, according to a news article on Medscape Today, the incidence of celiac disease has increased markedly over the last three decades, perhaps even as fourfold, and studies are suggesting the incidence may actually be higher than 1% of the population.
    What is the reason for this? According to Dr. Jonas Ludvigsson, MD, from the Department of Medicine, Epidemiology Unit at the Karolinska Institute and Orebro University Hospital in Sweden, and a renowned celiac expert, there may be many factors explaining this, but there probably is an actual increase underlying these.
    The Medscape article went on to report that the Mayo Clinic has confirmed increase in celiac disease incidence, reported in Discovery's Edge, the Mayo Clinic's research magazine. Dr. Joseph Murray, MD, and colleagues analyzed stored blood samples from Air Force recruits in the early 1950s for gluten antibodies. It was assumed that 1% would be positive, given today's estimates, but the number of positive results was far smaller. Dr. Murray and his colleagues compared their results with two more recently collected sets with the conclusion that celiac disease is about four times more common today than it was in the 1950s.
    Additionally, Dr. Ludviggon's research team in Sweden has found that those living with celiac disease and latent celiac disease have higher mortality than those who don't have these conditions. Latent celiac disease is also known as "gluten sensitivity," a term to describe those who have "normal small intestinal mucosa but positive celiac disease serology," estimated to affect 1 in 1000 people. According to Dr. Ludvigsson's research team, in 1 year, 10 of 1000 individuals with celiac disease will die, as compared with 7 in 1000 individuals without the disease. The mortality rate is increased among those who also have latent celiac disease as well. The increased risk, however, is quite small.
    As alarming as the statistics are regarding the increasing rate of celiac disease, Dr. Ludvigsson shares some good news with Medscape—the methods of diagnosing celiac disease are actually improving. According to some other estimates, the rate of celiac diagnosis rate is increasing. For those who are testing positive for the celiac disease, the only method of treatment currently available is eliminating gluten from the diet. Yes, this is a simple treatment, although it can require some challenging lifestyle adjustments for the gluten-free community, something which I address in my work as an author, researcher, and gluten-free advocate. In the future, we may see other treatments such as gluten-digesting enzymes (which are on the rise) or even the genetic modification of the structure of gluten in wheat so that it will not cause an autoimmune reaction in celiac patients. Even with celiac diagnosis incidence on the rise, with raised awareness and effective diagnosis, we can help change the lives of millions of celiac Americans for the better. This is an important endeavor.


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    Did you actually get a complete celiac panel?   https://www.verywellhealth.com/celiac-disease-blood-tests-562694 Doing allergy testing (IgG) is well sort of helpful, but not very accurate per all the leading allergy groups.  You can google that.   Since 2012, have you ever thought about going gluten free for six months?  Unless you really need a firm diagnosis, it is something to consider.  My hubby did that some 20 years ago and is healthy.  Oddly,  I was  diagnosed with celiac d
    Thank you so much.  No doctor would refer me to a gastro doctor, so I made an appointment myself without referral.  I took all my copies of bloodworkwith me and begged for help.  I explained my situation. He was one of the best in my town.  I was told to throw all my integrative tests in the trash and to gain 20 pounds and I would feel better.  At the time I was my normal thin self.  He said my bloodwork looked good and I was not a risk factor.  I may try to see another specialist and see if any
    Yes, celiac runs in families. You can have testing done to see if you carry the chromosomes that predispose you to it. There are many folks who have the chromosomes who never develop celiac, but it is my understanding that if you don’t have those chromosomes then you probably don’t have celiac.... with the caveat that they are finding more genetic markers as time progresses. If your brother has celiac, you are at risk, but not guaranteed to develop celiac disease. All celiacs have to be ext
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