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 first—it 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 two critical areas:
* Multi-Center Serological Screening
Study to determine the prevalence of Celiac Disease in the United
* New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease.
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.
BLOOD SCREENING UPDATE
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.)
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.
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
The Center for Celiac Research, the University of Maryland Program for Continuing Education, 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. The symposium will be held August 10-13, 2000 at the Marriotts Hunt Valley Inn, Hunt Valley, Maryland.
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?