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    University of Maryland Celiac Disease Prevalence Study for the USA


    Scott Adams

    Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995, 1996 - All rights reserved worldwide.


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    Memo to the Celiac Community From:

    Annette Bentley, NJ
    Phyllis Brogden, PA
    Sue Eliot, WA
    Bill Elkus, CA
    Sue Goldstein, NY
    Bette Hagman, WA

    Joanne Hameister, NY
    Caroline Harlow, DC
    Marge Johannemann, KY
    Mike Jones, FL
    Cynthia Kupper, WA
    Sandra Leonard, OH

    Bob Levy, MD
    Jim Lyles, MI
    Mary Neville, PA
    R. Jean Powell, MT
    Carolyn Randall, OH
    Ellen Switkes, CA

    How can Celiacs in the U.S. get the necessary attention of the medical, business and governmental communities we so desperately seek?

    A few short years ago many European countries were experiencing the same frustrations. Today, things are dramatically better. Most have Gluten-Free products readily available; doctors are knowledgeably looking for Celiac Disease in patients; school children are being tested for celiac disease when they first enroll in school; McDonalds sells Gluten-free Big-Macs.

    What made the difference was a series of serological screening studies. They concluded, beyond a reasonable medical doubt, that 1 of every 300 in the general population is a Celiac. These tests showed that there was a lucrative market in Celiac Disease; and money speaks.

    Since celiac disease is genetic, those of us in the U.S. of European descent should test to the same ratio. This means that there could be more than a half-million Celiacs in the United States.

    The technology used by the Europeans to do these studies is even more reliable today. Dr. Alessio Fasano and Dr. Karoly Horvath, University of Maryland School of Medicine (UMSOM), conducted a small scale serological study in the U.S. several months ago. This study showed approximately the same results as those in Europe.

    UMSOM has established the Center For Celiac Research, with Drs. Fasano and Horvath, Medical Directors. They have set-up a design for a comprehensive study, in cooperation with several medical centers throughout the U.S., to establish the prevalence rate of celiac disease in this country. The main ingredient missing to implement this three (3) year, $600,000 study is money. Grant monies from federal, state or local governments are just not readily available, primarily due to the lack of interest in a rare disease such as Celiac.

    This is why we are putting forth this letter of support. Now is the time to put our money and whatever other resources we may have on the line. Now we can do something to make things better for ourselves, our children and those Celiacs of the future.

    We need your commitment to help fund this momentous undertaking. If we pledge and contribute what we are able, we can make it happen. For example: One-thousand (1000) of us contributing only $600 - $200 per year, for three (3) years, will fund the study.

    Saturday, May 10, 1997, 1:00 PM at the University Of Maryland - College Park Campus, in the School Of Business Building, Room 1203, will be the kick-off of this once-in-a-lifetime opportunity to make a real difference. Some of our speakers will be Dr. Michael N. Marsh, Manchester, England, Dr. Alessio Fasano, Dr. Karoly Horvath, and other doctors prominent in the study and treatment of Celiac Disease. A detailed program will be posted in about a week.

    Whether you are able to attend or not, PLEASE SHOW YOUR COMMITMENT by filling out the attached pledge form and return as indicated. We also need for you to assist us in getting the word out to those who are not on the Internet. Please copy and distribute this letter to members of your local group.

    As the new century nears, wouldnt it be great to be on the verge of a new era of Celiac recognition and lifestyle that we helped to make happen?

    FOR RESERVATIONS; or more information contact:
    Kirk Gardner
    Telephone 410-328-4400
    Fax 410-328-6817
    E-mail: kgardner@umms001.ab.umd.edu
    Internet: http://www.celiaccenter.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.

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    Scott Adams
    The University of Marylands Center for Celiac Research has received approximately $231,000 in contributions and pledges. We thank all of you who have made a contribution or pledge. As we reported in the September update, when we began this effort back in May of 1977, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years, we would be on our way to funding this extremely important study. As of September 1st, we had received only 122 pledges in the amount of $70,335. To date, we have received only 8 additional pledges; however, we did receive a significant number of cash contributions for which we are very grateful.
    For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future. We wanted to advise everyone that due to circumstances beyond our control our voice mail line 410 706-2715 crashed on December 20th. The problem was corrected on January 11th; however, all messages that were left during that time were lost. We apologize for any inconvenience this may have caused.

    Scott Adams
    Currently, the Center for Celiac Research is involved in two critical areas:
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    1) SEROLOGIC SCREENING STUDY
    We have tested 3,076 samples as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. Our preliminary findings indicate that 6.8% of first-degree relatives and 4.7% of second-degree relatives of Celiacs test positive for the disease. These results are similar to those reported previously in Europe, suggesting that Celiac Disease is currently under-diagnosed in the United States.We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study into full operation. Your financial help is pivotal to accomplish our goals.
    2) NEW DIAGNOSTIC ASSAY
    Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human transglutaminase gene. By using this tool, we have developed a new diagnostic tool that may eventually allow us to make a definite diagnosis of Celiac Disease without an intestinal biopsy.
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    Blood screenings of first and second-degree relatives have been conducted in New York, North Carolina, New Hampshire, California, Pennsylvania, Washington, Maryland, Texas, and Rhode Island.Screenings are scheduled for Billings, Montana June 19th, Louisville, Kentucky September, 18th and Vermont (to be scheduled in Oct/Nov.)
    WEB SITE
    Thanks to the sponsorship of Dietary Specialties, we are very excited to announce that the Center for Celiac Research will have a web site. The domain name will be www.celiaccenter.org. and should be on line by June 21st.
    FUND-RAISING UPDATE
    As of June 1, 1999, the University of Marylands Center for Celiac Research has received approximately $340,000 in contributions and pledges. We thank all of you who have made a contribution or pledge. The Center was very fortunate to receive three significant pledges/contributions over the past four months which helped boost our contribution total by more than $100,000 since our last update. Although this is a significant increase, we must keep the momentum going.
    For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future.
    NINTH INTERNATIONAL SYMPOSIUM ON CELIAC DISEASE
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    The medical program to be presented will discuss the most advanced knowledge of the genetic, immunological, and diagnostic aspects of Celiac Disease. In addition, a panel of international experts will discuss new frontiers for the treatment and prevention of Celiac Disease. Celiacs from around the world will be given the opportunity to compare
    the practical aspects of living with Celiac Disease in different countries and cultures at a full day session. Registration information and costs will be available in August and will be posted on the web site.
    WHAT CAN YOU DO?
    If you have not made a pledge or contribution, please consider making one at this time. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St. Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc. If possible, increase your current pledge or make another gift at this time. Discuss the importance of this study with fellow celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. Organize discussions and/or fund-raising efforts with your local support group. For example, Tri-County Celiac Sprue from Walled Lake, MI organized a bake sale and the Greater Louisville Celiac Sprue Support Group organized a walk/run event. Both donated the proceeds to the Center. Help us to identify possible organization, companies, trusts or foundations that might be in a position to help. Please contact Pam King at 410-706-8021 if you have any questions or need any assistance. Send contributions to the Center for Celiac Research in honor or in memory of a friend or loved one. Make a gift to the Center in honor of the new year.

    Scott Adams
    Currently, the Center for Celiac Research is involved in three critical research areas:
    Multi-Center Serological Screening Study to determine the prevalence of Celiac Disease in the United States We have tested 3,998 individuals as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. Our preliminary findings indicate that 5.7% of first -degree relatives and 3.1% of second degree relatives of celiacs test positive for the disease. These results are similar to those reported previously in Europe, suggesting that Celiac Disease is currently under-diagnosed in the United States.
    We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study into full operation. Your financial help is pivotal to accomplish our goals.
    New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human tTG gene. Our preliminary results show that the human TtG assay performs much better than the commerically-available tests (including anti-endomysium antibodies and guinea pig-based transglutaminase assay).
    New Dot-Blot Assay We have developed a human tTG dot-blot test based on the detection of anti-tTG antibodies in serum or in one drop of whole blood, which can be carried out within thirty minutes. The preliminary results of the dot-blot assay indicate that the assay is as reliable as the human tTG ELISA test, making the diagnosis of Celiac Disease possible at the physicians ambulatory site.
    If the sensitivity and specificity of these tests can be confirmed on a large scale, a case can be made on the possible discontinuation of the invasive intestinal biopsy procedure as the gold standard for the diagnosis of celiac disease. This would result in early identification and treatment for patients with celiac disease at a significant cost savings. We will continue to validate these innovative tests during the future blood screenings.
    BLOOD SCREENINGS
    Blood screenings of first and second degree relatives have been conducted in California, Kentucky, Maryland, Montana, Pennsylvania, New Hampshire, New York, North Carolina, Rhode Island, Texas, and Washington state.
    FUND-RAISING UP-DATE
    We are happy to report that as of September 1, 1999, the University of Marylands Center for Celiac Research has received approximately $369,494.00 in contributions and pledges. We thank all of you who have made a contribution or pledge.
    As we reported in the June update, when we began this effort back in May of 1977, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years, we would be on our way to funding this extremely important study.
    For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future.
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    Please make all donation checks payable to the University of Maryland Foundation, Inc. and send with the pledge form or a note saying that the donation is for the Center for Celiac Research. Since the University of Maryland Foundation, Inc. houses all the gift funds for the University, they are not permitted to deposit checks into the Celiac account if the check is not made payable to the University of Maryland Foundation, Inc. Thanks for your cooperation.
    UNITED WAY CONTRIBUTIONS
    This is another great way to make a gift to the Center for Celiac Research and satisfy your employers request to participate in the United Way Appeal. Please designate under Other The University of Maryland Foundation/Center for Celiac Research, 511 W. Lombard St, Baltimore, MD 21201.
    OTHER WAYS OF GIVING TO THE CENTER
    For many, providing for important research is an important aspect of their financial planning. If this is true for you, prudent and skillful investment planning can create rewarding opportunities for both you and the Center for Celiac Research. You may interested to know, for example, that:
    Appreciated securities, held long-term, can be given to the Center without incurring a capital gains tax. And, the full fair market value of the securities is available as a charitable deduction. Life insurance that is no longer needed for family or business protection can provide major support for the Center while producing important tax savings for you. Participation in a pooled income fund or the establishment of a charitable trust, using appreciated securities, for the eventual benefit of the Center can be an excellent means of increasing your spendable income and minimizing income, capital gains, estate and inheritance taxes. The final opportunity to express your lasting commitment to the Center for Celiac Research at the University of Maryland School of Medicine is through your will or revocable trust. Of course, charitable bequests are not subject to the federal gift tax and are not included in the taxable estate for federal estate tax purpose. WEB SITE
    Our web site, celiaccenter.org, has been on line since the middle of June. The research and fundraising updates, as well as updates on the Ninth International Symposium on Celiac Disease, individual and group screening information, blood screening locations, and donation information will be posted on the web site.
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    WHAT CAN YOU DO?
    If you have not made a pledge or contribution, please consider making one at this time. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St. Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc. If possible, increase your current pledge or make another gift at this time. Discuss the importance of this study with fellow celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. Organize discussions and/or fund-raising efforts with your local support group. Help us to identify possible organization, companies, trusts or foundations that might be in a position to help. Please contact Pam King at 410-706-8021 if you have any questions or need any assistance. Send contributions to the Center for Celiac Research in honor or in memory of a friend or loved one. Make a gift to the Center in honor of the holidays.

    Scott Adams
    University of Maryland Center for Celiac Research: Research Update - 1 in 150 Adults Have Celiac Disease
    (Celiac.com 06/12/2000) Multi-Center Serological Screening Study to determine prevalence of Celiac Disease in the United States. We have tested 8,199 individuals as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. This number is comprised of the following: 4,162 healthy individuals (1,473 pediatric and 2,689 adult), 3,797 from risk groups (1,008 children with symptoms, 618 adults with symptoms, 1,819 first-degree relatives and 352 second-degree relatives). Our preliminary data indicates that the following number of individuals tested positive for Celiac Disease: General pediatric population 1 out of 163 General adult population 1 out of 150 General population 1 out of 154 Children with symptoms 1 out of 40 Adults with symptoms 1 out of 30 First-degree relatives of celiacs 1 out of 12 Second-degree relatives of celiacs 1 out of 11 For each child with symptoms, four children have celiac disease without symptoms; and For each adult with symptoms, 2 adults have celiac disease without symptoms making Celiac Disease a silent disease. We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study in full operation. Heres how you can help: Pledge your financial support. This study is almost entirely funded by individual donor contributions. Participate in our blood screening drives. New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease.Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human tTG gene. Our preliminary results show that the human TtG assay performs much better than the commercially-available tests (including anti-endomysium antibodies and guinea pig-based transglutaminase assay). New Dot-Blot Assay. We have developed a human tTG dot-blot test based on the detection of anti-tTG antibodies in serum or in one drop of whole blood, which can be carried out within thirty minutes. The preliminary results of the dot-blot assay indicate that the assay is as reliable as the human tTG ELISA test, making the diagnosis of Celiac Disease possible at the physicians ambulatory site. If the sensitivity and specificity of these tests can be confirmed on a large scale, a case can be made on the possible discontinuation of the invasive intestinal biopsy procedure as the gold standard for the diagnosis of celiac disease. This would result in early identification and treatment for patients with celiac disease at a significant cost savings. We will continue to validate these innovative tests during the future blood screenings

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