Although a celiac disease (CD) diagnosis can mark the happy ending to years of mysterious painful physical and mental symptoms, it also represents the beginning of a whole new lifestyle. Celiac disease, an autoimmune disease caused by an intolerance to gluten, a protein found in wheat, barley, and rye, has only one treatment, a gluten-free diet. With the pervasiveness of gluten in typical American fare, the diet presents quite a list of challenges. As toughs as these can be to deal with, provided with enough knowledge and support, anyone can maintain a healthy gluten-free diet. Fortunately, the celiac community has several organizations and groups that advocate on their behalf and provide them with these necessary ingredients to success. One group that stands out for its celiac advocacy work is the Celiac Disease Foundation (CDF), which is dedicated to educating and supporting the celiac community.
The Celiac Disease Foundation describes itself on its website as “a non-profit, public benefit corporation dedicated to providing services and support regarding Celiac Disease and Dermatitis Herpetiformis, through programs of awareness, education, advocacy and research.” A look at their website, Celiac.org, will demonstrate this. Dermatitis Herpetiformis is a type of rash unique to gluten-intolerant individuals and is treated with a gluten-free diet as well, although a drug can be administered to suppress symptoms.
Celiac Disease Foundation maintains that the most successful way for a celiac to live gluten-fee is to be presented with enough facts about the foods you eat to make informed diet and lifestyle decisions. CDF takes care of educating their members on their website as well as in their booklet, “Guidelines for a Gluten-Free Lifestyle,” available for purchase for $10 online or free with membership. In its fourth edition, the “Guidelines” explains the FDA’s 2006 gluten-free labeling laws and includes a nutrition chart, glossary, lists of helpful resources, and of course information about celiac disease, such as an explanation of gluten, whether or not to avoid oats, and how to find a physician. The book is not only useful for celiac patients themselves, but also for relatives, teachers, and healthcare professionals. It may be worthwhile to order several copies and hand them out to people in your lives whose knowledge of the disease and the gluten-free diet is important to you. You can order it online or by calling 818-990-2354.
According to About.com, “Studies have shown that one reason why some celiac patients can’t stay gluten-free is that they don’t have a support group to encourage and help them.” CDF has local chapters listed on its website where celiac patients can connect with each other, share information and tips, offer support and guidance, and arrange gluten-free social events. The friendships and sense of community that can come from participating in such a group can be invaluable for celiac patients.
In addition to providing enlightenment and support to celiac patients themselves, the Celiac Disease Foundation is also dedicated to increasing awareness of and research into the disease. Their website offers a list of ten ways to increase awareness yourself as a member of the group. They also sell tee-shirts and offer free downloadable brochures for you to pass out in your own efforts to raise celiac disease awareness. In addition to empowering its own members to take action, CDF works with food companies and the food service industry to help the gluten-free community. They also encourage and support celiac disease research, sharing the fruits of well-supported evidence with the celiac community.
The Celiac Disease Foundation focuses significant attention on young celiac patients as well. In the “Kids Korner” of the website, one will find information relevant to celiac children, such as information about the group R.O.C.K. (Raising Our Celiac Kids), gluten-free summer camp, and listings of support groups for children, teens, and young adults.
If you’re a celiac patients yourself or the parent or relative of celiacs, it is worthwhile to consider membership in a celiac support group such as the Celiac Disease foundation. Joining is simple; you can print, fill out, and mail in a Membership Registration Form. The free is $35 and includes a long list of benefits, such as a free copies of “Guidelines for a Gluten-Free Lifestyle,” the “Quick-Start Diet Guide,” a quarterly newsletter, access to information and referrals, participation in workshops and other events, and also the opportunity to be a part of local chapters. According to CDF, the money generated by membership dues goes toward work for “more informed physicians, for more rapid diagnosis of CD and an improved quality of life for people affected by celiac disease / dermatitis herpetiformis.” It seems only reasonable that one should a group that is dedicated to supporting us.
Celiac Disease Foundation http://www.celiac.org
About.com: Benefits of a Celiac Support Group http://celiacdisease.about.com/od/resourcesforceliacs/a/SupportBenefits.htm
From our home to yours, Tina Turbin.