How much do you know about celiac disease? May is Celiac Awareness Month

May is Celiac Awareness Month — shedding light on an autoimmune disorder in which a person’s immune system will damage their small intestine if they eat gluten.

Seattle Children’s Hospital estimates that for every diagnosis, eight cases aren’t noticed, so the hospital has put together a unique celiac outreach and mentor program mostly run by kids, for kids.

Elle Penarczyk was diagnosed with celiac disease when she was 6. What happens when she eats gluten? “I just get really bad diarrhea and stomach issues,” she explains. Gluten is found in cereal grains. It’s what gives bread dough elasticity.

When Elle was diagnosed, her parents got a crash course in gluten-free food. The difference was clear when they changed her diet. “I really do think she instantly felt better. We could see she had color in her cheeks,” says her mom, Tammy Penarczyk.

Now, Elle has her own gluten-free area. The family has learned a lot from Dr. Dale Lee, who directs Seattle Children’s Hospital’s celiac program.

“Our goal is for our patients to be out there, doing the things that they like, spending time with their friends and family, and doing things at restaurants, going on class trips. But it requires some education and planning ahead of time,” Lee says.

Eleven patients are on the front line as the Celiac Youth Leadership Council. They’re running a gluten-free food drive for a food bank this month. “These are students who have now helped to organize the support groups, serve as mentors to other kids in the support group, and we’ve also decided that we would love to elevate the knowledge and the awareness of celiac disease in the community,” Lee says.

Elle is part of the effort. “I really like going to talk to them, and tell them what it’s like to have celiac disease, and how they can overcome it, and like, what are some good gluten-free foods to eat,” she says.

Her mom is glad Elle is making a difference and helping others.

CYLC members’ goal is to educate the community and support patients and their families. They’re testing gluten-free products sold in regular bakeries and pizzerias to see if they are affected by flour in the air from the products that are made with gluten.