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  • Scott Adams
    Scott Adams

    University Researchers Seek Families with Celiac Disease/Dermatitis Herpetiformis History

    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.

     


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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

  • Related Articles

    Jefferson Adams
    Celiac.com 05/06/2011 - Recent epidemiological studies show that the prevalence of Celiac disease had been underestimated, affecting not only Europeans, but also populations of the Mediterranean countries, such as Middle East (1-4) and North Africa (5-7), where its prevalence is similar to that of Western countries.
    A international team of researchers recently set out to estimate the global burden related to undiagnosed Celiac Disease in the Mediterranean Area, as computed by morbidity, mortality and crude health cost.
    The team included Luigi Greco, Laura Timpone, Carmela Arcidiaco, Abkari Abdelhak, Attard Thomas, Barada Kassem, Bilbao Josè Ramon, Boudraa Ghazalia, Cullufi Paskal, Hugot Jean Pierre, Abu-Zekry Mona, Kuloglu Zarife, Roma Eleftheria, Shamir Raanan, Ter Terzic Selma, and Zrinjka MiÅ¡ak.
    Prevalence of celiac disease among low risk populations varies from 0.14% to 1.17% (15-17): 1%-1.3% in Turkey (18.19), 0.6%-0.96% in Iran (20-21), 0.5% in Egypt (22), 0.6% in Tunisia and Israel (23-24), <0.5% in Jordan, Lebanon, and Kuwait (1.10,16.25). Among high risk groups (patients with positive family history, insulin dependent diabetes mellitus, thyroiditis, etc.) the prevalence of celiac disease ranges from 2.4% to 44% assessed by serological markers and biopsy (26-27).
    The team discovered a celiac disease prevalence of 1%, an incidence, based on new Cases/year estimated on 1% of the live births of 1 in 7 symptomatic adults, and 1 in 5 children. Their results showed standardized mortality rate of 1.8 compared to age and sex matched population.
    They found that the delay between symptoms and diagnosis was six years for adults, and two years for children.
    The team found associated conditions in 10% of the total cohort (KB 30%: Turkey 2% Iran 33% , IDDM 10% (6.7-18.5%).
    Sixteen percent of symptomatic patients showed celiac disease-related complications.
    The team found the following non GI Symptoms among symptomatic patients: short stature 25% Anemia 40% (20-80%) Osteopenia 30% (30-50%), abnormal liver function 10% (Turkey 38%, Iran 25%).
    In the Northern Africa Region and in the Middle East very high incidence of celiac disease has recently been reported both in the general population and in at risk-group. These high frequencies are due to the wide consumption of wheat and barley and to the high frequency of the DR3-DQ2 celiac disease predisposing haplotypes in these population (13,14).
    Source:

    http://www.medicel.unina.it/00_materiali/materiali_evento_napoli/the_burden.pdf

    Tina Turbin
    Celiac Disease Prevalence is on the Rise
    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.


    Jefferson Adams
    New Technologies and Ingredients Creating Better Gluten-free Foods
    Celiac.com 09/20/2013 - New technologies and ingredients are helping manufacturers to improve the look, taste and nutritional profile of gluten-free food products, a market that is expected to grow to $6 billion by 2017, according to a presentation at the 2013 Institute of Food Technologists (IFT) Annual Meeting & Food Expo in Chicago.
    In addition to growing numbers of people with celiac disease, and gluten sensitivity, much of the demand is being driven by people with preference for gluten-free foods, said Chris Thomas, senior food technologist at Ingredion, Inc.
    Manufacturers of gluten-free foods have historically focused on the 'gluten-free' aspects of their products.
    This approach as resulted in gluten-free products which are gritty, or dry in texture and have a short shelf life. To mask these negative features, or to enhance bland flavor, many gluten-free products contain high amounts of sugar and offer little nutritional value.
    That is changing rapidly. "Now, consumers want nutrition quality, variety and appearance," says Thomas.
    Consumer demand and new manufacturing approaches, including the development and use of flours, starches and bran made from alternative ingredients, are leading to gluten-free products with better texture, flavor and nutritional profiles than in the past.
    By using native functional tapioca and rice-based flours, manufacturers of gluten-free foods are eliminating grittiness and crumbliness, and crafting products with texture, color and appearance that is similar to wheat-containing counterparts.
    The resulting gluten-free products are also similar to wheat-based products in term of calories, fat content, overall nutrition and shelf life.
    One huge advance toward better gluten-free food products comes from the commercial use of pulses. These are the edible seeds of leguminous crops, such as peas, lentils, chickpeas and edible beans, which have a high viscosity, as well as high levels of protein, fiber and other nutrients. They are being used to create flour and starch-like substances for better gluten-free products.
    So far, pulses have been used to create a number of gluten-free pastas, baked goods, snacks, breadcrumb substitutes, and even milk-like beverages in the international food market, says Mehmet Tulbek, Ph.D, the global director of the research, development and innovation division of Alliance Grain Traders (AGT).
    All of these developments, coupled with strong market growth, mean that consumers of gluten-free foods can look forward to more and better gluten-free products coming very soon.
    Source:
    http://medicalxpress.com/news/2013-07-technologies-ingredients-options-gluten-free.html

    Jefferson Adams
    Celiac Disease Rates Rising in Children
    06/04/2014 - A Swedish research team study of nearly four decades of population-based data shows that rates of celiac disease are rising in most age groups of children.
    The research team included Fredinah Namatovu, Olof Sandström, Cecilia Olsson, Marie Lindkvist, and Anneli Ivarsson. They are variously affiliated with the Department of Public Health and Clinical Medicine, Epidemiology and Global Health, the Department of Clinical Sciences, Paediatrics, and the Department of Food and Nutrition, all at Umeå University, in Umeå, Sweden.
    In order to assess variations by age, sex and birth cohort, and to determine the clinical impact of these changes, their research team recently looked at rates of biopsy-proven celiac disease in children in Sweden over a 36-year period. The team used the National Swedish Childhood Celiac Disease Register to identify 9,107 children under 15 years of age who were diagnosed with celiac disease from 1973 to 2009.
    From 1973 to 1990 the register covered 15% of the the Swedish population, increasing to 40% during 1991–1997, and then to 100% from 1998 onwards. The research team estimated annual celiac rates, cumulative incidence and clinical impact by age groups, calendar month and birth cohorts.
    Their results show that celiac disease rates are increasing in children aged 2–14.9 years. One encouraging piece of data revealed that celiac rates in children 1.9 years and under decreased sharply in the most recent years.
    Average age for celiac diagnosis rose from 1.0 year in the 1970s to 6.8 years by 2009. The average number of new cases rose from about 200 during 1973–1983 to about 600 during 2004–2009.
    In the birth cohorts of 2000–2002 the cumulative incidence even exceeded that of the epidemic cohorts at comparable ages. The highest overall rates were seen in those born between 1985–1995 and 2000–2002.
    Celiac disease risk varies between birth cohorts, which indicates environmental and/or lifestyle risk factors may be at play in triggering celiac disease. Finding new prevention strategies will require further research.
    Source:
    BMC Gastroenterology 2014, 14:59. doi:10.1186/1471-230X-14-59

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