In spring 2022, all six members of the McCabe family of Pompton Plains, New Jersey, were miserable with a stomach virus. But 11-year-old Aiden was hit particularly hard. Weeks after the rest of his family recovered, he was still not getting better. “He was going to the bathroom 10 to 12 times a day, and the pain and the bloating were terrible,” says Aiden’s mom, Tina.

Aiden had suffered from gastrointestinal issues since he was a baby. As a toddler, a number of specialists saw him, but they could not determine a cause for his gastrointestinal troubles. Aiden became adept at managing his symptoms, but his frequent bathroom visits were never “normal”—something he had to deal with both physically and emotionally.

But this post-stomach bug discomfort was a new level of misery. The family’s pediatrician referred them to Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, where he met Wendy Jeshion, M.D., co-division chief of Pediatric Gastroenterology.

“We ended up at Dr. Jeshion's office, and thank God, because within a half an hour after we arrived, she said, ‘I think Aiden has celiac disease,’” Tina says.

A Diagnosis at Long Last

After asking Aiden some questions and feeling around his abdomen, Dr. Jeshion thought celiac disease could potentially be the culprit, so she ordered blood tests. The test results were off the charts for celiac disease. An endoscopy to biopsy his intestines confirmed the diagnosis.

“Without testing, it can be difficult to diagnose celiac disease, especially in very young children because there is a vast array of symptoms which can often be subtle—even nonexistent—and may not necessarily be a gastrointestinal symptom,” Dr. Jeshion says.

Typical GI symptoms are:

• Diarrhea
• Significant weight loss
• Abdominal pain and distension
• Vomiting

Not-so-obvious symptoms in children include:

• Slowed growth/short height
• Anemia
• Constipation
• Dental enamel issues
• Joint symptoms

On top of physical symptoms, many children with celiac disease experience a psychosocial and emotional impact as well, such as difficulty concentrating, mood swings, irritability, anxiety and depression. Over the years, Aiden had to deal with the emotional challenges of managing his symptoms amidst his daily activities, Tina says.

A Genetic Component

Because celiac disease is a genetic disease, Dr. Jeshion recommended that all the McCabes get screening blood testing for celiac. When celiac disease is suspected, it’s important that patients not remove gluten from their diet until after they’ve been evaluated, she says, because without the gluten present to cause a reaction in the body, it may be impossible to make an accurate diagnosis.

When the screening test results came back, surprisingly, Aiden’s younger sister, Lia, also tested positive. Lia had no symptoms, but her endoscopy showed the same level of intestinal damage as Aiden.

“Having the genetic predisposition for celiac disease does not mean that the patient will definitely develop celiac disease,” says Dr. Jeshion. People are not born with the disease, she explains. The immune system has to be triggered. Triggers may include infections and changes in the gut microbiome in conjunction with gluten in the diet.

‘Believe It Will Get Better’

Even if someone with celiac disease has no symptoms, like Lia, it’s important to completely eliminate gluten in their diet, Dr. Jeshion says. If untreated, celiac disease can lead to the development of other health problems including the development of other autoimmune disorders, osteoporosis, anemia, an inability or reduced ability to absorb nutrients, and infertility issues.

“I feel like Dr. Jeshion saved us,” says Tina. “If we hadn't found out that Aiden had celiac disease, I don't know if he would've gotten worse or developed some other secondary problem because of not addressing the celiac disease. And with Lia, we would never in a million years even think to get her tested.”

Since getting Aiden’s and Lia’s diagnoses, the McCabes have transitioned their household to a gluten-free diet. It’s been quite an adjustment. The family has worked with Dr. Jeshion’s nutritionist to learn about non-food items that also contain gluten and to create an eating plan that does not aggravate their intestines. In addition to food, gluten can be found in things such as lip balm, Play-Doh and lotions.

Now that they’re on a gluten-free diet, both Aiden and Lia’s gastrointestinal systems have recovered. Aiden, although he still occasionally gets intestinal pain, is feeling remarkably better. 

Both Aiden and Lia have to deal with the psychosocial impacts of a strict gluten-free diet, especially at school, birthday parties and family gatherings. “As a social worker, I know how important it is to acknowledge the social and emotional needs of children newly diagnosed with celiac disease,” Tina says. “Feeling different and left out is difficult for all children, especially when you can’t indulge in what everyone else is eating.”

While it can be hard to manage the gluten-free diet, Aiden wants other kids who have suffered because of celiac disease to “believe it will get better.”

Next Steps & Resources:

• Meet our source: Wendy Jeshion, M.D.
• To make an appointment with a pediatric gastroenterologist near you, call 800-822-8905 or visit our website.

The material provided through HealthU is intended to be used as general information only and should not replace the advice of your physician. Always consult your physician for individual care.