May is Celiac Disease Awareness month. Celiac is among the most common autoimmune disorders, and still, Seattle Children’s Hospital estimates that for every diagnosis, eight cases aren’t noticed.
Now, a 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 years old.
“I just get really bad diarrhea and stomach issues,” Elle explained.
Her parents got a crash course in gluten-free food.
“I really do think she instantly felt better. We could see she had color in her cheeks,” Tammy Penarczyk, Elle’s mom, said.
Now, Elle has her own gluten-free area, and those are gluten-free cookies they’re making. They’ve all 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 said.
Now, 11 patients are on the front line as the Celiac Youth Leadership Council, or "CYLC." They’re running a gluten-free food drive for a food bank right now.
“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 continued.
“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,” said Elle.
Her mom is glad Elle is making a difference and helping others.
CYLC members’ goal is to educate and support patients, families and the community. They are currently running a city-wide cross-contamination experiment. They’re now testing gluten-free products sold in regular bakeries and pizzerias to see if they’re affected by flour in the air.