CELIACTODAY

Books about living with celiac disease can provide lots of practical information but rarely capture the emotional aspects of the lifestyle. Now, a new DVD offers both practical advice and emotional insights.

The DVD, “Raising Your Celiac Child: Guidelines for a Gluten-Free Life,” was written and produced by members of the Celiac Support Group at Children’s Hospital Boston. It’s available from the hospital’s web site.

The DVD is a trove of information about nearly all facets of living with celiac. It contains 12 modules, or chapters, that range in time from around seven to 15 minutes each. They can be played all at once, one at a time, or in any combination.

Two of the modules are technical, dealing with the disease and the diet. Most of the others provide practical advice, such as how to follow the lifestyle when at home, school, or traveling, or when grocery shopping, baking, or dining out.

Adjusting to the Lifestyle

The most powerful modules are those in which parents and children talk about how they felt when the diagnosis arrived and as they adjusted to the lifestyle.

Concludes one boy, about 12 years old: “I feel like everyone else. I feel like a normal kid, just who has to eat different things.”

The Children’s Hospital support group made the DVD precisely because of the challenge the diet poses, said Tracy Keegan, the support group’s founder and a co-producer of the DVD.

“When you’re diagnosed with celiac disease,” Ms. Keegan says, “there’s an overwhelming amount of information to learn—way more than you can absorb in one session” with a dietician.

Reaching Out

Another goal, she says, was to “reach out to people who don’t have access to world-class hospitals,” as well as to nurses, dieticians and others who will need to understand the disease as the rate of diagnoses increases.

Besides videotaped interviews and demonstrations, each module includes pages of tips and advice. When the DVD is played on a computer, that information can be printed out.

Each module also contains an Internet link to the Children’s Hospital web site, where more information can be found.

Ms. Keegan’s daughter, Marina, who was 16 at the time of filming, acts as the DVD’s “host,” and briefly introduces each module. Marina was diagnosed with celiac disease at 19 months old. She herself has been active in support group affairs, including writing a popular column, "Ask the Teen," in the group's quarterly newsletter.

Tracy Keegan says the choice of having a teenager host the DVD was deliberate.
“It shows parents that their child will grow up and be fully functional, and that the disease will not deprive them of anything,” she says.

“And, of course, kids look up to teens,” Ms. Keegan notes. “They’ll say, ‘She’s okay. So, I’ll be okay.’”

This story originally appeared in the (November, 2007 ) issue of CeliacToday.com. It was most recently updated in (February, 2008).