You know the feeling: You just found out your child has celiac disease, and as soon as you hang up the phone with your doctor or leave the office, questions start swirling through your mind.
Will she be safe at school? Will we ever again eat at a restaurant as a family? Will he be teased or feel left out of things like camp and parties and trips? And how can I best explain this to my well-meaning—but admittedly clueless—extended family?
They’re the questions that Alan Leichtner, M.D., director of the Celiac Disease Program and vice chair of the department of medicine at Boston Children’s Hospital, hears over and over. So Leichtner and a team of parents, patients, faculty and staff produced short videos addressing the most common patient concerns.
“We wanted to create a resource that would help families learn about this chronic illness and learn to cope with the gluten-free diet,” says Leichtner. “Our goals are to demystify celiac disease and bring families and professionals together in a community to support children with celiac disease; we want to help parents realize that their kids will adjust and will learn how to deal with peer pressures that make it challenging to follow a gluten-free diet.”
Answering Common Questions
Video topics range from creating a gluten-free kitchen to working with your child’s school to preparing to eat at restaurants and more. They are alternately told from the perspectives of parents, young children, teens, Leichtner, a nutritionist and a social worker. The 12-video series is available for free on the hospital’s Celiac Disease Program site.
Leichtner’s team also created companion materials, including a comic book for younger children and a DVD for teens heading off to college, which includes a section intended to educate campus dining hall staffers.
Additionally Leichtner is spearheading a project in which teen patients are creating video chronicles of their day-to-day gluten-free life. The videos will be edited and disseminated to teen patients via a new website. “Teens would much rather listen to another teen who’s learned how to adapt to a gluten-free diet than listen to me, sitting in my white coat lecturing them,” Leichtner knowingly concedes.
Robin McLafferty, executive director of the hospital’s celiac disease support group and the parent of a teenager with celiac disease, helped create the videos. But she benefited in unexpected ways as a viewer.
“At the time the videos were created, I was comfortable with being gluten-free in my own home, but I worried when my daughter was on her own at school and when we ate in restaurants. So it was interesting to see how other families handled [those challenges],” she says.
She is especially grateful for videos that helped her family navigate milestones such as going away from home for extended periods. “It was seeing the video about camp that ultimately gave me the peace of mind I needed to send my child; my daughter wound up loving camp and went back for many years,” McLafferty says.
Leichtner remains passionate about offering educational tools to children and families. His team will be updating the video segment on food shopping and in the future he hopes to oversee the creation of new online teaching tools.
“As much as I value face-to-face contact between parents and families and kids with celiac disease, learning is increasingly occurring online,” he says. And since you can’t keep your doctor in your pocket 24/7, it’s reassuring to know that trusted information is just a click away.
Amy Goes Gluten-Free, a spirited comic book for younger children, is available on Amazon for $4.
Gluten-Free at College, the two-part DVD, is also at Amazon, for $29.95. Proceeds support the development of new family education materials.