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 created 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.
Memo to the Celiac Community From:
Annette Bentley, NJ
Joanne Hameister, NY
Bob Levy, MD
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?