Celiac Disease: Weston’s Story

Four-year-old Weston and his twin sister Brielle both suffer from cyclic vomiting syndrome, a condition linked to migraines that often causes episodes of severe vomiting. For Weston, these attacks had occurred since he was a baby, so when he began to wake up complaining that he didn’t feel well, his parents, Heather and Bob, weren’t initially alarmed. That changed when Weston began to lose weight.

Over the course of a couple of months, Weston lost more than six pounds. And not because he wasn’t eating — the little boy was always hungry. No matter how much he ate, however, his weight continued to decrease. Weston’s worried parents took him to a CHOP pediatrician. After two visits without any improvement of Weston’s symptoms, the pediatrician recommended that Weston be tested for celiac disease.

An overwhelming diagnosis

Celiac disease is an autoimmune disorder in which the body’s immune system reacts to gluten, a protein found in wheat, rye and barley. When a person with celiac disease eats gluten, the villi (tiny finger-like projections) in their small intestine are damaged. Damaged villi can’t effectively absorb nutrients from food. If Weston had celiac disease, his body wasn’t getting the nutrients it needed to grow. The only way to heal the villi would be to avoid gluten altogether.

Three days later, Weston’s blood test came back positive. An endoscopy (a procedure that uses a thin, flexible tube with a light and camera to view a patient’s small intestine) would be needed to confirm the diagnosis, and the pediatrician referred the family to the Center for Celiac Disease at CHOP.

With a positive diagnosis, Heather scheduled Weston for a visit at CHOP’s Center for Celiac Disease. In the meantime, she began shopping for gluten-free foods. In addition to celiac disease, Weston is allergic to eggs, which further limited his dietary options. “I remember standing in the grocery store sobbing,” says Heather. “I didn’t know what he could have.”

Weston wasn’t a huge fan of his new diet either, no matter what special tricks Heather tried. Until his appointment at the clinic, Weston lived off of pepperoni, cheese and raisins, the only safe foods he actually enjoyed. Finally, the day of Weston’s appointment arrived. Armed with books and toys to keep the twins entertained, the family headed to the Celiac Center.

Education and support

The Center for Celiac Disease at CHOP is one of the largest and most comprehensive of its kind in the United States. It supports thousands of children living with celiac disease, providing their families with the education and training necessary to navigate a gluten-free lifestyle.

When the family arrived at the Celiac Center, they were surprised to discover that the first part of Weston’s appointment was an informational session on celiac disease. Over the course of the appointment, Heather and Bob learned what celiac disease is and what food and items Weston would need to avoid. “Wheat is in things that you would never expect,” says Heather. “Soaps, shampoos and even Play-Doh.”

They also learned what foods were safe for Weston. Weston received a nutritional assessment by Janel Steinhoff, RDN, LDN, a registered dietician, and Heather and Bob were given ideas for gluten- and egg-free foods they could make at home. “We got a really big list of safe foods and items,” says Heather.

The last part of Weston’s appointment was a consultation and physical exam by Arunjot Singh, MD, MPH, Co-Director of the Celiac Center. After discussing Weston’s treatment plan and disease outlook, the family left their first clinic visit armed with a bag of safe goodies for Weston and tons of helpful information. Heather says:

“I remember feeling like we had more direction and guidance.”

A new way of life

Because celiac disease has a genetic component, Heather, Bob and Brielle all needed to be tested, too. Although their tests came back negative, the family knew their home would need to be strictly gluten-free in order to keep Weston healthy. Even with the extensive information provided by the Celiac Center staff, transitioning to a gluten-free lifestyle wasn’t easy. “It was a whole new learning curve,” says Heather.

Over time, Weston has gotten used to his new diet, and Heather has figured out substitutes for almost all of his favorite foods. She keeps a stock of gluten-free pretzels, graham crackers and bars in Weston’s classroom, as well as frozen gluten-free cupcakes in the event of a school birthday party. Brielle, in solidarity with her twin brother, sticks with her gluten-free diet at school, too, even though that means missing out on her favorite snack, goldfish.

With backup options always available in Heather’s purse, Weston barely complains when he isn’t able to have something with gluten. And when he’s offered food by family and friends, he’s learning to ask, “Is it Weston-friendly?”

Happy, healthy

Heather reports that after a year on his new diet, Weston has finally reached his pre-diagnosis weight, and even his cyclic vomiting episodes have seemed to improve. Weston’s journey with celiac disease has been quite a ride, but his parents are extremely grateful that they’ve had the support of CHOP’s Celiac Center team along the way.

In February 2020, a full year after Weston’s diagnosis, the family visited Disney World. Heather was thrilled to discover that there were many gluten- and egg-free options: Weston was able to enjoy waffles, macaroni and cheese and even Mickey ice-cream. On the amusement park’s famous Main Street, U.S.A., an allergy-friendly bakery gave Weston his choice of delicious options. When the little boy, now 5, was able to order his first-ever bakery cupcake, Heather found herself in tears again, but this time for a very different reason.