Until recently, clinicians didn't have a tool to recommend to patients adjusting to celiac disease and its related
gluten-free diet. "There was no training or educational DVD to help newly diagnosed patients and families," says Tracy Keegan, the mother of two children with celiac disease. "And unlike other diseases, there are no medications to take. To become healthy, patients need to understand what gluten is and where it's found in order to avoid it." So she teamed up with Alan Leichtner, MD, associate chief of Gastroenterology and Nutrition and director of the Center for Celiac Disease, to develop an educational DVD, Raising your Celiac Child: Guidelines for a Gluten-Free Life, and accompanying Web site.
Fourteen years ago, Dr. Leichtner and Keegan established the Celiac Support Group at Children's. Currently, more than 350 families participate and more are joining,
reflecting the increasing population of patients diagnosed with the disease. The new DVD, narrated by an active, healthy teen with celiac disease, offers information, support and resources. The modules cover topics such as how to shop in the supermarket, bake with gluten-free flour, interact with a child's school and tips on
adjusting emotionally. The accompanying Web site,
www.childrenshospital.org/celiacinfo, offers additional information, including a list of safe foods for families to print out and keep in their kitchens.
"We hope this answers the need for a very high level of accurate information that even dietitians can learn from," Dr. Leichtner says. He plans to distribute the DVD to clinicians as well as families. It's the first in a series of educational tools that he hopes to develop; inflammatory bowel disease is the next topic on his list.
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