Youth take on Celiac disease through peer-to-peer support network
SEATTLE Wash. (Ivanhoe Newswire) — 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.
“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, shared.
Now, Elle has her own gluten-free area. They’ve all learned a lot from Dale Lee, MD, 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,” explained Dale Lee, MD, MSCE, Director Celiac Disease Program, Seattle Children’s Hospital.
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,” Dr. 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 pizzarias to see if they’re affected by flour in the air.
Symptoms of Celiac disease vary from person to person and some experience no symptoms at all. The most common symptoms children and adults may experience are: abdominal pain, diarrhea, constipation, weight loss, nausea, and fatigue.
Infants and young children with celiac disease are more likely to have digestive symptoms but can also suffer from: irritability, stunted growth, delayed puberty, and dental enamel defects of the permanent teeth. Adults are also susceptible to digestive symptoms, but more commonly suffer from: unexplained iron-deficiency anemia, fatigue, bone or joint pain, arthritis, bone loss or osteoporosis, depression or anxiety, tingling numbness in hands and feet, seizures, canker sores inside the mouth, or dermatitis herpetiformis (an itchy skin rash).
Researchers think as few as 20% of people with the disease ever get a proper diagnosis. The damage to the intestine is very slow, and symptoms are so varied, that it can be years before someone gets a diagnosis.
Contributors to this news report include: Wendy Chioji, Field Producer; Bob Walko, Editor; and Bruce Maniscalco, Videographer.