CELIACTODAY

The American Celiac Disease Alliance (ACDA) was formed in 2003 to seek federal legislation to require all manufactured food products to be labeled for the presence of major food allergens. Members include celiac research centers, national support groups, corporations, doctors and others.

Working with groups representing individuals with other severe food sensitivities, the ACDA achieved its aim. The resulting legislation also required the U.S. Food and Drug Administration to establish a standard that companies would have to meet before labeling a product as “gluten-free.”

Based in Alexandria, Va., the ACDA has become a permanent advocacy organization that represents the interests of the celiac community.

The Celiac Disease Foundation (CDF) has about 2,000 members and some 85 chapters. About a quarter of the chapters are in California. CDF itself, founded in 1990, is based in Studio City, Calif., just north of Los Angeles.

CDF publishes a quarterly newsletter and a variety of educational materials; holds an annual educational conference and vendor fair; organizes periodic special events and workshops; encourages food and drug manufacturers to focus on the celiac community, and advocates for research on celiac disease, among its many activities.

The Celiac Sprue Association (CSA) is the largest celiac support group in the U.S., with approximately 10,000 members. It was formed in 1984, though a predecessor organization dates to 1978.

Based in Omaha, Neb., CSA has about 125 chapters. It also has some 65 “volunteer resource units,” which are individuals, often in rural areas, who stand ready to help as needed, according to the group’s motto of “Celiacs helping celiacs.”

CSA publishes a quarterly newsletter, Lifeline; conducts educational programs for doctors, dieticians, patients and others; runs a gluten-free product certification program, and holds a national conference and vendor fair each year, among other activities. An affiliated foundation raises money to support efforts that benefit people affected with celiac disease.

Founded in 1974, the Gluten Intolerance Group of North America (GIG) is the oldest celiac support group in the country. It has approximately 60 chapter and about 2,000 members. Its headquarters are in Auburn, Wash., south of Seattle.

GIG is active in awareness, educational, support and advocacy efforts, but also goes further in several areas. For example, it operates a program to certify food products as gluten-free. It organizes two summer camp programs for children with celiac disease. And in recent years, it has assumed leadership of an effort, called the Gluten-Free Restaurant Awareness Program, to encourage restaurants nationwide to offer a safe gluten-free experience.

The National Foundation for Celiac Awareness was established in 2003 to raise awareness and funding for celiac research, education and screening. Its ultimate goal is to find a cure.

Heidi Collins, a CNN anchor who has celiac disease, is the foundation’s spokesperson. The foundation also gains visibility by organizing “Gluten-Free Cooking Sprees” in cities around the country. For these events, physicians and top chefs team up to compete against other teams to develop and cook the best gluten-free meals.

The foundation is based in Ambler, Pa., a suburb north of Philadelphia.

The National Institute of Diabetes and Digestive and Kidney Diseases, part of the U.S. National Institutes of Health, launched its Celiac Disease Awareness Campaign in 2006. There is little of practical use on the campaign web site, other than a link to celiac-related clinical trials.