For over thirty years, the Celiac Sprue Association (CSA) has offered support, education and advocacy for people with celiac disease and dermatitis herpetiformis. Today, with roughly 10,000 members, the CSA is the largest nonprofit celiac support group in the United States.
In December 1977, Pat Murphy Garst was diagnosed with celiac disease. With few resources available for celiacs at the time, Garst took what information she could find and wrote one of the first cookbooks designed specifically for gluten-free living. Not satisfied with simply providing recipes, Garst wanted to create a support group for families living with celiac disease, and contacted each person who had purchased her cookbook. In January 1978, Garst, together with 12 other individuals, formed the Midwest Celiac Association (MCSA), based out of Des Moines, Iowa. By the following February, the organization had grown to support members in 11 states.
Today, the Celiac Sprue Association has 125 Chapters and 65 Resource Units across the United States, all run primarily by volunteers. The CSA is staffed by an executive director and support team as well as a medical advisory board. The organization continues to provide education, support and advocacy for celiac patients around the world.
Publishing and Education
The primary mission of the CSA is to make educational materials available to those living with celiac disease. The CSA maintains a comprehensive educational resource to help newly diagnosed celiacs learn the basics of living a gluten-free lifestyle and a database of published research concerning celiac disease and related conditions. Additionally, the organization offers two regular publications:
- Lifeline Magazine: The quarterly newsletter of the CSA, Lifeline Magazine has been in print since 1981. Lifeline keeps CSA members abreast of celiac-related research, events and news as well as offering recipes, product information and personal success stories.
- CSA Gluten-Free Product Listing: This is a 470-page reference resource that lists not only celiac-friendly consumer products, but also stores and restaurants suitable for gluten free lifestyles. The guide also features tips on gluten-free living and shopping, a glossary of terms, and contact information for manufacturers.
The CSA further facilitates gluten-free living through the implementation of the gluten-free Seal of Recognition. This seal on product packages assures consumers that the product contains no more than 20 parts per million gluten and is a safe food choice for any level of gluten sensitivity.
Advocacy and Support
A new diagnosis of celiac disease can be frightening and bewildering. One of the most effective ways to work through these emotions is with the support of other people coping with similar concerns. Because of this, providing support and a sense of community to people with celiac disease is one of the CSA's primary goals. The CSA website features a database of local units, indexed by state. Each unit provides support and information to members and non-members alike.
Living with celiac disease can be difficult for adults, but even more so for children. The Cel-Kids Network is the division of the CSA devoted to helping kids find community and support among other children living with celiac disease. The network is coordinated through the regular regional chapters, and provides not only social connections with other young celiacs, but also age-appropriate education about the condition.
Additionally, the CSA actively advocates for celiac interests with private industries, governmental regulations and the general public. Through awareness campaigns, government lobbying and the exchange of information, the CSA works toward transparent product labeling, full information disclosure and public celiac awareness.
Celiac Sprue Association Memberships
You do not need to be a member of the CSA to benefit from its work, but as a non-profit, volunteer-driven organization the CSA relies upon membership funds to cover publishing and administrative costs. Memberships are affordable and cover your entire family for a full year. Members receive a subscription to Lifeline Magazine, a number of information pamphlets and advocacy materials, and registration discounts for the annual CSA Conference. More importantly, with a CSA membership you become part of a nationwide organization devoted to increasing the quality of life for people living with celiac disease.