- Miscellaneous Information on Celiac Disease
- Celiac Disease Research Projects, Fundraising, Epidemiology, Etc.
- University of Maryland Celiac Disease Prevalence Study for the USA - Progress of Study as of September 1, 1999
University of Maryland Celiac Disease Prevalence Study for the USA - Progress of Study as of September 1, 1999
- By Scott Adams
- Published 07/26/1996
- Celiac Disease Research Projects, Fundraising, Epidemiology, Etc.
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, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet firstâit was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
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 CD. 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 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.
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.
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.
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.
NINTH INTERNATIONAL SYMPOSIUM ON CELIAC DISEASE
The Center for Celiac Research at the University of Maryland School of Medicine, the University of Chicago, and the University of California, San Diego are pleased to announce joint sponsorship of the Ninth International Symposium on Celiac Disease to be held August 10-13, 2000 in Baltimore, Maryland. A brochure outlining the program, and registration and hotel information will be distributed to all group leaders throughout the country, and additional brochures will be made available to them for distribution to their members. We anticipate a very large attendance so we advise you to register as soon as possible.
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.
As always, Celiac.com welcomes your comments (see below).