When Norah was about a year old, she started experiencing odd symptoms.
“She was vomiting, her belly was distended, and her hair became brittle,” explained her mom, Andrea. “She was also moody and wouldn’t engage in play or activities. She seemed to be slowing down cognitively like she was in a mental fog.”
Andrea and her husband, Dennis, took Norah to their pediatrician, who thought it was likely acid reflux. But after months of medication, there was no improvement. In fact, they noticed new, more serious symptoms; Norah was losing muscle in her arms and legs.
“My mom is a pediatric nurse, and she was very concerned after I sent her a video of Norah dancing around in her diaper. She started doing some research and found it was likely celiac disease.”
Celiac disease is an immune reaction to eating gluten that creates inflammation that damages the small intestine's lining. It leads to medical complications and prevents the absorption of some nutrients. Celiac disease is one of the most common inherited disorders and is estimated to affect 1 out of every 133 people in the U.S.
“We took Norah back to the pediatrician, who sent us to the Celiac Center at Advocate Children’s Hospital – Park Ridge, where her test results for celiac disease were off-the-charts positive,” said Andrea.
As soon as they received the diagnosis, they started Norah on a strict gluten-free diet. They noticed significant improvements right away.
“She was happier and more active, and her hair started growing again. Since celiac disease is an autoimmune disorder, we think it was triggered by a serious bought of pneumonia and RSV that Norah had just before her celiac symptoms started.”
Even the tiniest bit of gluten will trigger symptoms and major discomfort for Norah, who’s now 8 years old.
“Being gluten-free has forced me to become a better cook and baker,” shared Andrea. “We’re lucky to have a wonderful community of friends, family, and help at school that supports Norah so that she can thrive as any girl her age can.”
And Norah takes her condition in stride.
“My life is like any other kid’s life. I just eat a few different foods from other people,” she explained.
Norah continues to have yearly checkups at the Celiac Center. She also goes in if she’s experiencing any stomach troubles to narrow down the cause, but she and her family always have a great experience with the clinical team.
Earlier this year, Norah and her family hosted an event at an all-gluten-free restaurant to raise funds for the Celiac Center. Norah’s grandfather also started his own fundraising page to support the Center.
“We love how the Celiac Center engages patients and the community to spread awareness and bring people together to learn more and form friendships around the disease.”
How you can help
The Celiac Center at Advocate Children’s Hospital – Park Ridge is supported by charitable gifts from generous donors. To help more children like Norah and their families who are impacted by celiac disease, contact Amy Valenzio at amy.valenzio@aah.org.