Celiac Disease: Shane's Story

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Shane is an outgoing and articulate 9-year-old, who loves riding horses, running track and going to the theater. When he was diagnosed with celiac disease he struggled at first with adapting to a gluten-free lifestyle. But he adapted quickly, finding favorite gluten-free treats, and has become a strong self-advocate.

Shane waterskiing Dena and Morey are the parents of four children. The children had never showed any reactions to eating gluten, but after several members of Dena’s family were diagnosed with celiac disease, they decided to get tested, since there is a high-genetic component to the disease.

Celiac disease is an autoimmune disorder that triggers an immune reaction when the body is exposed to even tiny amounts of the protein gluten, which is found in wheat, rye and barley. It is a serious condition which, over time, can damage the intestines and cause long-term health issues. Because celiac disease can be very difficult to diagnose, clinical experts use a variety of tools to diagnose the condition, including blood tests, endoscopy and biopsy.

Shane’s first blood test came back positive.

Seeking answers at CHOP

The family contacted Ritu Verma, MBChB, a pediatric gastroenterologist and Director of the Center for Celiac Disease at Children’s Hospital of Philadelphia (CHOP), to confirm the diagnosis.

At Shane’s first appointment, Dr. Verma looked at the lab reports and reviewed the family’s medical history. She agreed that celiac disease was a possibility, but the blood test alone wasn’t enough to make a diagnosis. Treatment involves a major change in diet, which can be a challenge for children and families. She did not want to prescribe that without a certain diagnosis.

Dr. Verma scheduled Shane for an endoscopy, a test to look for inflamed or damaged tissue in the linings of bowel, at the Kohl’s GI Nutrition and Diagnostic Center, which offers state-of-the-art endoscopic and nutrition services for infants, children and teens. Shane was instructed to continue eating gluten so the test would show inflammation if he indeed had celiac disease.

The scope showed mild tissue damage, but a blood test done at the same time showed some improvement over the previous readings. Taken together, the results were inconclusive.

Finally, a diagnosis

Because Dr. Verma understood the immense impact that a positive diagnosis would have for Shane, she continued to monitor him rather than prescribing a strict gluten-free diet before it was necessary. The family kept to their normal diet, bringing Shane in for blood tests every three to five months for the next year and a half. When the blood tests began to come back more consistently positive for celiac disease, Dr. Verma scheduled a second endoscopy.

With the results of the endoscopy, Dr. Verma felt confident in confirming a diagnosis of celiac disease. Thanks to the close monitoring and early diagnosis, there was no serious damage, and she prescribed a gluten-free diet.

Navigating a gluten-free lifestyle

Within a short time of his diagnosis, Shane became acutely aware of what he could and could not eat, often worrying about whether a particular food was safe.

Following training sessions at CHOP, Dena and the family decided to overhaul the kitchen and become a completely gluten-free household. Going gluten-free is more complex that just buying different food. It involves cleaning and replacing many kitchen supplies, as even trace amounts of gluten can trigger an immune reaction.

One day, when he came home from school, Dena casually suggested that he go in the pantry and pick out a snack for himself. He felt frustrated that some of the things he liked could make him sick, and he did not know what to pick. “I told him, ‘This is a safe haven now. There’s nothing here that’s bad for you. It is all gluten-free.’ He got this big smile and gave me a hug.”

A few months later, the blood tests normalized and showed that his new, gluten-free diet was working to help heal his body.

Coping emotionally

The transition was not without bumps. It was harder for Shane to stick to his new lifestyle at school, at friends’ houses and at parties, where he did not want to bring attention to himself. At 9 years old, birthday parties are regular events, often with pizza and cake that Shane could not eat. At first, he did not want to go to the parties, but over time he became comfortable bringing his own treats.

Now, Shane has become an excellent advocate for himself, and is open about the challenges he faced. “I was worried at first. How am I going to find all these foods? And I didn’t know how my friends would react. But they reacted well. I bring my own stuff and it’s fine with them,” he says.

Dena and Morey are extremely grateful for what Dr. Verma and the entire team at the Center for Celiac Disease have done for the family.

It’s because of Dr. Verma’s tremendous passion and attention to detail that we ended up with a clear diagnosis.

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