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    Genetic Research Study - The Columbia Genome Center Columbia University College of Physicians and Surgeons


    Scott Adams


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    Columbia Genome Center at Columbia University College of Physicians and Surgeons, New York, NY: The Center is looking for families who have more than one member affected with Celiac Disease, to participate in a genetic research study. Information about the study is included below. All inquiries should be made to the Genetic Coordinator, Michele Pallai, at (203) 438-3582 or email: pallai@ibm.net.

    The Columbia Genome Center is sponsoring a research program at the Columbia University College of Physicians and Surgeons to identify the gene responsible for Celiac Disease. Professor of Genetics and Development, T. Conrad Gilliam, renowned for mapping the genes responsible for Wilson disease and spinal muscular atrophy, is leading the investigation. In addition to his own research staff, Professor Gilliam has access to all of the resources of the Columbia Genome Center for ancillary support of this project.

    Role of Families with Celiac Disease: The key to this type of study is the participation of families in which there are at least two family members affected with Celiac Disease. Participation of unaffected, as well as affected members may be needed. Those individuals who consent to participate will be asked to provide a sample of blood (20cc) for DNA analysis and give permission for release of their diagnostic records for review by Dr. Peter Green, Clinical Professor of Medicine. Blood collection can be done through a physicians office or a blood drawing laboratory. Participants will be provided with a blood drawing kit. The project will cover the costs of drawing the sample and its shipment. Guidance will be provided by the Genetic Coordinator, Michele Pallai.

    Who can participate in the study? Anyone representing a family with two family members affected with Celiac Disease can participate. Why should I participate? The involvement of multiple families will best enable the identification of the genetic cause of Celiac Disease. It is anticipated that this identification will lead to earlier diagnosis and effective treatment. What will I have to do? You will need to donate a sample of blood and release your diagnostic records. Any incurred costs will be reimbursed.

    All interested individuals should contact the Genetic Coordinator, Michele Pallai, at (203) 438-3582 or email: pallai@ibm.net

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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.

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    Scott Adams
    We have tested 1,579 samples as part of the Multicenter Serological Study for the prevalence of celiac disease in the United States. Our preliminary findings indicate a 5.8% positive finding of first degree relatives and a 3.2% positive finding of second degree relatives of celiacs. These findings are in the same range as were found in most of the European studies done in previous years. As we initially stated in our protocol, we will need to test a total of 45,000 blood samples. The six (6) regional centers have begun minimal screening of study participants. Now we need the necessary dollars to put the study into full operation. Blood testing, supplies, and shipping charges will increase significantly in direct proportion to the samples processed.

    Scott Adams
    Summary prepared by Nancy Kloberdanz as a joint effort of all the national celiac organizations GIG, CDF, CSA/USA, and ACS.
    Celiac organizations and patients from several states recently attended two very important educational lobbying efforts in Washington DC. 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, and were advocates for the Digestive Disease National Coalition (DDNC) and National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS). Our goals in lobbying were twofold. First to encourage the Senators and Representatives we visited to support a 16.5 % increase in the Budget for NIH (National Institutes of Health) and to provide $405 million to NIAMS in fiscal year 2001. This money is important in efforts to double the NIH budget by 2003. NIH is the major funding organization for research that is supported by government grants. Often research that may not seem directly linked to celiac disease and dermatitis herpetiformis, is beneficial to our disease and others. A good example is the Genome Project. Genetic mapping will help researchers refine their research and hopefully speed efforts to find causes and cures for diseases.
    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.

    Jefferson Adams
    Celiac.com 12/13/2011 - Alvine Pharmaceuticals, Inc. has announced that efficacy data from its Phase 2a clinical trial of ALV003 shows that oral ALV003, administered as part of a gluten free diet, reduced gluten-induced intestinal mucosal damage in people with well-controlled celiac disease.
    Alvine presented the study findings in a session of the 19th United European Gastroenterology Week (UEGW) in Stockholm.
    "These results are groundbreaking 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," says Markku Maeki, M.D., chair and professor of pediatrics at the University of Tampere and Tampere University Hospital in Finland, and coordinating investigator of the ALV003 Phase 2a trial.
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    Of those, many still suffer gluten-related discomfort and gut damage. In fact, Mr. Maeki adds, "up to 60 percent of adult celiac disease patients continue to experience symptoms and up to 80 percent continue to have persistent intestinal inflammation despite adhering to a strict gluten-free diet."
    Since gluten is so common in food processing, it's almost impossible to avoid ingesting tiny amounts of gluten, even for people with celiac disease.
    Gluten contamination commonly occurs via cross-contamination in the processing of food products, incorrect or inaccurate labeling, lack of dietary education and awareness, and even due to willful back-sliding on the part of otherwise faithful gluten-free dieters.
    According to Dr. Maeki, non-dietary treatment options that either eliminate, or significantly reduce gluten ingestion by those attempting a gluten-free diet are needed, "ecause it is all but impossible to avoid gluten, even while adhering to a gluten-free diet, celiac patients are at continued risk for gastrointestinal symptoms and potentially serious long-term medical consequences."
    The study is constructed as a double-blind, placebo-controlled Phase 2a clinical trial on 41 adults with well-documented celiac disease, who had followed on a gluten-free diet for one or more years. Study participants were randomly given ALV003 or a placebo each day for six weeks. At the same time, they were given 2g of gluten in the form of bread crumbs.
    Each member of the study received small bowel biopsy at the beginning of the trial, and then again after six weeks of daily gluten challenge.
    The study's primary endpoint was intestinal mucosal morphometry (villus height:Crypt depth)(or vh:celiac disease) measured at baseline and at six weeks.
    Secondary endpoints included intraepithelial lymphocyte (IEL) density (cells/mm), gastrointestinal symptoms as measured by Gastrointestinal Symptom Rating Scale (GSRS) scores, celiac serologies, safety and tolerability.
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    --  IELs, including CD3+ and CD3+ alpha/beta and gamma/delta subsets, which measure inflammatory response, were essentially unchanged in the ALV003-treated patients but significantly increased in the placebo-treated patients.
        ------------------------------------------------------------------------
                                        Change from Week 0                     p value
                                             to Week 6
        ------------------------------------------------------------------------
                               ALV003 (n=16)      Placebo (n=18)
        ------------------------------------------------------------------------
         Vh:celiac disease                                -0.2                -0.8         0.0133
        ------------------------------------------------------------------------
          CD3+ IELs                      +2.4               +30.8        0.0152
        ------------------------------------------------------------------------
        CD3 alpha/beta IELs         -1.8               +24.2         0.003
        ------------------------------------------------------------------------
        CD3 gamma/delta IELs    +0.5               +10.9         0.003
        ------------------------------------------------------------------------
                
    --  Overall GSRS scores and scores for indigestion and abdominal pain symptoms were lower in ALV003-treated patients than in placebo-treated patients, although the results were not statistically significant.
    --  No statistically significant changes were observed in celiac disease serology tests between the ALV003 and placebo-treated patients, although positive trends were observed for tissue transglutaminase (tTG) and deamidated gliadin peptide (DGP) antibodies in the ALV003-treated group, a measure of immune responsiveness.
    --  No serious adverse events were reported. Non-serious adverse events consistently occurred more frequently in the placebo-treated patients. Adverse events that occurred in 10 percent or more patients included abdominal distention, flatulence, eructation, abdominal pain and diarrhea.

    Source:

    http://www.marketwatch.com/story/alvine-pharmaceuticals-presents-additional-efficacy-data-from-phase-2a-trial-of-alv003-in-celiac-disease-patients-2011-10-24

    Jefferson Adams
    Celiac.com 08/01/2014 - I sometimes have to remind myself that it’s the 21st century, and that some amazing scientific breakthroughs that sound like something out of science fiction are, in fact, real.
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    Source:
    Natureworldnews.com

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    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. 
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    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!
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    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. 
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    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.
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    The research was funded by the National Institutes of Health.
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    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.