Celiac Disease: Cameron’s Story

Cameron, 2½ years old, is back to his happy-go-lucky self after being diagnosed with celiac disease and adhering to a gluten-free diet. At first, parents Kristina and Ryan, weren’t too alarmed. After all, their happy, chubby-cheeked toddler had been the picture of health just months prior, even topping the 70th percentile in weight at his one-year wellness visit.

But when their son’s condition continued to worsen through March and April – to the point that his chubby cheeks were gone, his eyes were sunken, and his personality changed – family members noticed.

“He just could not get comfortable,” Kristina says. “It was like he was on edge all the time. You could tell that nothing would make him happy except for sitting on the couch and watching his favorite Toy Story movie.

At his worst, Cameron was pushing his food away, lacked the energy to do things he’d previously loved – like climbing stairs – and wasn’t verbalizing the way he used to. One day at a babysitter’s home, all Cameron wanted to do was lie on the floor.

At his tender age, Cameron couldn’t tell his parents how much pain he felt, or why he was acting so cranky. “It was really sad to see,” Kristina says, looking back. “His personality had changed 100%. We were like, ‘Where is our happy-go-lucky guy?’”

A desperate search for answers led the Vineland, NJ, family to Children’s Hospital of Philadelphia where Matthew J. Ryan, MD, a pediatric gastroenterologist at CHOP’s Specialty Care and Surgical Center in Voorhees, NJ, assessed Cameron in early April. By that time, Cameron’s weight had dropped to the 50th percentile, he looked gaunt and acted withdrawn.

Discovering a manageable diagnosis

At CHOP, Cameron underwent a series of tests, quickly revealing an ear infection and a hernia – neither of which explained his symptoms.

Blood tests did indicate something: his numbers for celiac disease were off the charts. To confirm the diagnosis, doctors recommended an endoscopy, considered the gold standard in the diagnosis of celiac disease. The procedure, which uses a thin, flexible tube with a light and camera to view a patient’s small intestine, was necessary to confirm celiac disease and plan treatment.

Cameron’s parents credit CHOP for helping their toddler bounce back after celiac diagnosis and treatment. Pictured: Parents Kristin and Ryan with Cameron, 2, and Brayden, 5. Celiac disease is a genetic, autoimmune disorder that causes the body’s immune system to react to gluten, a protein found in wheat, rye and barley. When a person with celiac disease eats gluten, the villi in their small intestines are damaged, and cannot effectively absorb nutrients from food.

“It wasn’t something I wanted to hear, but at least I knew there was something we could do to help our child,” Kristina recalls.

To avoid putting Cameron under anesthesia twice, doctors decided to combine his procedures. On May 15, he underwent an endoscopy and had his hernia surgically repaired.

Cameron went home that same day, though the family did not receive the definitive diagnosis of celiac disease until a day or two later. But because celiac was suspected, Kristina began Cameron on a gluten-free diet the minute he got home from the hospital. She’d been advised to continue feeding him gluten until the endoscopy so his condition could be confirmed.

Living with celiac disease

Five-year-old Brayden (right) looks out for Cameron, 2, to make sure certain foods are safe for his little brother to eat. After Cameron’s diagnosis, Kristina met with Registered Dietitian Janel Steinhoff, RDN, LDN, who works with the Center for Celiac Disease. Steinhoff performed a nutritional assessment on Cameron and helped teach his mom which foods were both safe and nutritious for her growing son.

Cameron had always loved pasta, so the switch to gluten-free varieties has not changed his appetite. The family keeps a separate shelf in the kitchen for all of Cameron’s snacks, like gluten-free Oreos, veggie sticks and applesauce pouches. To avoid cross contamination at family meals, Kristina prepares Cameron’s meals first.

“I was never one to look at labels, but now I have to look at everything,” says Kristina, who was most surprised to learn gluten is in the ChapStick she once used on Cameron’s lips.

Brother Brayden, 5, also looks out for his little brother, always asking if something is safe for his brother to eat before offering him a snack.

Happy and thriving

Now 27 months old, Cameron is thriving. “You can see it in his eyes that he is feeling better – almost back to normal,” his mother says. “His chunky cheeks are back.”

During a visit to Disney World last month, Kristina was delighted to discover the many gluten-free options available in the park. Not only did Cameron get to eat his first meal in a restaurant, but Mickey Mouse was also among his dining companions.

Kristina expects that a gluten-free lifestyle will not be as easy as Cameron gets older.

“It’s nice to know we will have CHOP with us every step of the way,” she says, noting that Cameron will continue seeing Dr. Ryan every six months for ongoing assessments.

Describing her family as “very grateful,” Kristina says that every doctor and nurse at CHOP had the same goal from day 1: To help Cameron.

“I love that CHOP is just a message away,” she adds. “I can message them at any time with a question and they get back to me quickly. I feel that is really important because there are so many things that could happen in between visits.”

Because celiac disease is a genetic condition that tends to cluster in families, both Kristina and Ryan were tested and found not to have the disease. Though big brother Brayden hasn’t shown any signs of celiac disease or gluten sensitivities, he also will be tested.