Beyond Celiac Disease: William’s Story

William’s family hadn’t been looking for celiac disease. They’d been looking for answers about why William wasn’t growing at the same pace as his classmates.

But when his pediatrician ran a blood panel to check for hormone issues, they found signs of celiac disease instead — an immune reaction caused by eating even tiny amounts of gluten. In some children and teens, it causes symptoms from abdominal pain to fatigue. In others, like William, it’s much less obvious. Perhaps most worrisome, it can cause growth delays. One reason seems to be this: Celiac disease makes it harder for the body to absorb nutrients.  

In other words, William wasn’t growing as much as he should, because his body wasn’t able to absorb the nutrients it needed. At age 14, time was of the essence.

William’s pediatrician referred him to Connecticut Children’s, which has a dedicated Celiac Disease Program. Within days, the family was sitting in the office of Jeffrey Hyams, MD, a pediatric gastroenterologist renowned for groundbreaking research and innovation.

“From the very first meeting, Dr. Hyams took my diagnosis seriously, because he knew it was urgent for my growth,” William says. “He helped us get an endoscopy scheduled right away.”

“Sometimes, the diagnosis of celiac disease is obvious with classic symptoms, or a previous family history. But often, like with William, patients have minimal symptoms and it takes an abnormal blood screening test to raise suspicion,” says Dr. Hyams. “The key is to expedite the diagnosis and start treatment right away — because a delay can have long-term consequences.”

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Thanks to the team’s rapid response, William’s diagnosis was confirmed within weeks.

With the support of Connecticut Children’s, he began the only treatment available for celiac disease: a lifelong gluten-free diet.

For help going 100% gluten-free, the family turned to celiac diet educator Beth Chatfield, MS, RDN, a clinical dietitian in the Divisions of Gastroenterology and Neurology.

Chatfield walked them through the ins and outs of label certification, hidden sources of gluten — even in sneaky categories like medications — and how to eat safely both in and out of their home. She also talked to them about the social and emotional aspects of being diagnosed with celiac disease. The stress of dietary restrictions can take a toll on mental health — and for better and worse, food is at the center of so many social events.

“Becoming gluten-free is a process,” says Chatfield. “You have to create new routines around cooking, shopping, traveling and everyday life. We support kids and families through this process, so they can be healthy and live a quality life with celiac disease.”

“Beth didn’t just give us a list of what to avoid,” says Matt. “She taught us how to navigate the world.”

Results beyond imagination

Once someone with celiac disease is gluten-free, the telltale signs can go away within a few weeks. At home, William’s family started with a full kitchen overhaul. They replaced cookware, cleaned every surface and began reading food labels like pros. William quickly discovered the gluten-free pastas and pizzas that were, to put it politely, “not great.” And then, to his shock, he found brands that tasted just as good as the original.

He was also shocked to notice changes in how he felt, almost right away. His thinking felt sharper. He had more energy. His academic performance — already strong — reached new heights. It was all beyond imagination.

“I told my parents it was like the first time I got glasses in fourth grade. I didn’t know how blurry everything was until it wasn’t anymore,” William says.

Over the next two years, he grew nine inches.

 

Not long ago, celiac disease was uncharted territory for William’s family. They credit Connecticut Children’s for guiding them through it.

“Dr. Hyams told us what would happen: that if I went gluten-free, I’d start growing in about six months,” William says. “And he was right. Everything he said would happen, did happen.”

Today, at age 16, William is thriving. He plans to study biology in college. In fact, his long-term plan is now to become a doctor. He’s even applied to volunteer at Connecticut Children’s to get early experience in a hospital setting.

“I’ve always liked science, but learning how my body works — why something like gluten could cause all this — made me want to understand it more. That curiosity has driven my enthusiasm,” William says.

For his care team, there could be no greater compliment.

“At Connecticut Children’s, our goal isn’t just to diagnose — it’s to empower families and help kids thrive,” says Dr. Hyams. “William didn’t let this diagnosis hold him back. He’s using it as motivation to take ownership of his health, and even explore a future in medicine. That’s inspiring. And it’s a perfect example of how early intervention can change the trajectory of a child’s health.”