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.
Celiac.com 03/29/2006 - What started as a grassroots campaign urging Congress to require labeling of food allergens has become a broad based advocacy organization, American Celiac Disease Alliance, aimed at providing a uniform voice on behalf of persons with Celiac Disease.
More than two years ago, an ad hoc group of 15 leaders in the celiac community, came together to help pass the Food Allergen Labeling and Consumer Protection Act (FALCPA) in Congress. The bill became law on August 3, 2004, easing much of the guesswork in food shopping for some 11 million consumers with food allergies.
With this achievement, the Task Force realized the need for a permanent, advocacy organization, and elected to become the American Celiac Disease Alliance,Inc. (ACDA). This step formalizes the role of the Alliance as the umbrella organization representing the needs of the celiac community for the advancement of education, research, and advocacy as recommended by the NIH consensus panel on celiac disease in June 2004.
A not-for-profit organization, the mission of the ACDA is to provide a uniform voice on behalf of persons with Celiac Disease through education and advocacy initiatives.
Some of the early goals of the organization that are being considered include assisting the FDA in determining a gluten-free standard for foods manufactured or imported into in the United States. The FDA is required to create such a standard by August 2008.
Disaster preparedness and improving insurance reimbursement for dietitians who provide nutritional counseling to persons diagnosed with Celiac Disease are also on the top of the Alliances project list.
Dietitians are a critical resource for newly diagnosed celiac patients and consultations with them are currently not reimbursed under many insurance plans. The group will be working with major health insurance providers to have dieticians paid for the services they provide to celiac patients.
ACDA is contacting key disaster preparedness groups such as the Red Cross and FEMA to help them develop protocol for meeting gluten-free diet needs during natural disasters. The group is also preparing a checklist of items that individuals should stock in case of emergency.
The ACDA is a volunteer organization headed by Executive Director, Andrea Levario, JD.
For Further Information Contact: Andrea Levario, Exec.