Celiac Disease: Jared's Story

One night, when Jared was 10, he developed a thirst that couldn’t be quenched. No matter how much water he drank, he was still thirsty. His mother, Terri, took him to the emergency room at Children’s Hospital of Philadelphia (CHOP), where he was diagnosed with type 1 diabetes. He stayed at CHOP for three days to get his insulin levels under control, and so that he and his family could learn how to manage the condition with prick tests and insulin injections.

An unexpected diagnosis

A few days after Jared got home, the family got a call with an additional diagnosis. His blood work showed that he also had celiac disease, an auto-immune disorder that triggers inflammation in the lining of the digestive system when the body is exposed to the protein gluten, which is found in wheat, rye and barley. Even trace amounts of gluten can cause inflammation and tissue damage in people with the disease.

Jared had experienced stomach problems off and on before the diagnosis, but nothing that caused him great discomfort. Now he had to change his diet and the timing of his meals to manage both diabetes and celiac disease.

Adjusting to a controlled diet

“The hardest thing was the carb limits for the diabetes,” he remembers. “Forty carbs of gluten-free pasta wasn’t enough. It would leave me hungry. I wanted more.”

Jared also struggled with the limits on snacking between meals, another measure to control his insulin levels. Those rules eased up two years later when he got an insulin pump.

To manage Jared’s celiac disease, his parents replaced all of their kitchen utensils and bought gluten-free food. His food would be prepared first, then the rest of the family’s meal, to avoid cross-contamination. He packed lunches for school. The family had to do research before they went out to eat, to make sure the restaurant had gluten-free options and strict preparation standards, using tools and surfaces that weren’t also used to prepare food with gluten.

Jared could tell when a restaurant that claimed to serve gluten-free food wasn’t careful enough. “Within a day I would get a stomachache and headache,” he says. “And a complete lack of energy. It would take a few days to get back to 100 percent.”

“It was tough at first,” Jared continues. “The gluten-free foods didn’t taste good. The bread would crumble. I started bringing sandwiches for my lunch at school when I found a gluten-free bread I liked.”

Birthday parties were another challenge. “I tried sucking it up, waiting until I got home from the party to eat,” Jared recalls. “I did that once. After that, I figured out ahead of time what they would be having and I’d bring my own. If they were having pizza, I’d make my own with a gluten-free crust.”

Over time, the rest of his family joined Jared in eating gluten-free. His sister led the way. She went gluten-free two years after Jared’s diagnosis. Then Terri and Kevin, Jared’s dad, joined in. The whole house became a gluten-free zone.

Education from CHOP

The Center for Celiac Disease at CHOP played an integral role in the family’s education on managing Jared’s condition. The center has a multidisciplinary approach to care. In addition to seeing physicians, patients and their families are provided with additional support and resources. The support team includes dietitians, behavioral health professionals, nurses, social workers and child life specialists.

The center offered training for Jared and his parents, along with ongoing support groups, run by the center’s Director, gastroenterologist Ritu Verma, MBChB. Patients and their families are encouraged to participate in support groups and share challenges and ideas and bring in new foods for others to try. At one support group, Jared made gluten-free pancakes, which were well-received, leading to a group of teens organizing a gluten-free breakfast theme for the session. At holidays, Jared also appreciated the cookie exchange. The Center for Celiac Disease also sponsors an annual education day featuring samples of gluten-free foods.

Over time, as gluten-free options have improved and become more readily available, Jared has been able to expand his menu. But the very best food sometime takes an extra effort. Jared’s favorite bakery is two hours away, for example. It’s good enough that he sometimes makes that drive for special treats.

One unexpected silver lining to all of the extra effort in watching ingredients and preparing food to avoid cross-contamination is that Jared is now a good cook.

“The celiac disease pushed me to learn how to cook. There were so few packaged options; you had to make it yourself. It also taught me how to pay attention to what’s in the food I’m eating. ”