Food is the best medicine for celiac disease

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Luke and Shelley Pierce couldn’t figure out why their son Oscar frequently complained of stomach pain and other digestive problems.

Sometimes these issues cropped up at school, and they couldn’t help but wonder if something was going on there that might explain it.

He was nearing the end of second grade when the stomach aches started. But in third grade, the Greenwood parents began noticing it more.

“We had considered maybe it was anxiety; he’s always been a bit introverted,” Shelley Pierce said.

Things got worse. He began suffering stomach cramps and vomiting after eating his beloved Oreos.

“At that point, we knew there was something going on,” his mom said.

Oscar’s pediatrician suggested they take him off dairy for a few days and see if that helped. It didn’t.

In January 2020, they took him in for more testing, including a celiac disease panel. His numbers were “astronomically high,” his mom recalled.

“We knew we had to see a GI (gastrointestinal) specialist, and we were referred to Dr. Brandon Sparks here at Riley.”

Dr. Sparks, who leads the celiac program at Riley Children’s Health, said about 1% of the U.S. population suffers from celiac disease, but that is likely a low estimate because it is under-diagnosed.

“Better testing and more awareness have helped families get the right diagnosis and start the right treatment,” he said.

Celiac disease is an illness caused by an immune reaction to gluten, a protein found in foods containing wheat, barley or rye. For those with celiac disease, eating gluten triggers an immune response in the small intestine.

Over time, the immune reaction creates inflammation that damages the lining of the intestine and prevents absorption of some nutrients, which can affect growth.

Currently, the only treatment is a strict gluten-free diet.

Oscar, now 13, was scheduled for a biopsy of his intestines in March 2020, but the emergence of COVID-19 delayed that procedure until July. That’s when they got the official diagnosis of celiac disease, something his parents had heard of but knew little about.

What they did know was that they had to make some big changes.

Overwhelmed is how Shelley remembers feeling.

“It was tough to hear as a parent. I just kept thinking about all the changes we were going to have to make, and I didn’t know how to step through that safely to make sure his home environment felt like his safe zone,” she said.

For the Pierce family, which includes two other children, it was not just about a new gluten-free diet for their son, though that was daunting enough. It was about making sure there was no cross-contamination from cookware, utensils and appliances at home because any trace amounts of gluten could still make Oscar sick.

So, they did a kitchen cleanout, purging their old Teflon-coated cookware, utensils, toaster, grill and air fryer and replacing them with new items for use only with gluten-free foods.

Plenty of people choose to eat gluten-free for the health benefits, Oscar’s dad said, but the prep may not be as important because they don’t have celiac disease.

“For him, cross-contamination is huge. Traces of gluten can cause big setbacks and make him sick. So, when we go out, we have to be very, very careful and very clear and have those conversations with restaurants on how the food’s prepared, do the fryers get shared with other items, how often do they change gloves,” Luke said.

Because of that, they don’t eat out often and they stick to a small circle of restaurants. In fact, their first meal out as a family was a year and a half after diagnosis during a trip to Florida.

When they explained their situation to a server at a small restaurant in Destin, the manager came out and took care of everything, Shelley recalled.

“Oscar was able to have a hamburger with a gluten-free bun and chips. He was able to eat with his cousins and not have to eat a bagged lunch. It was such a relief for me – I was in tears.”

Luke credits his wife for doing the heavy lifting when it comes to finding alternative foods and adapting recipes for their family.

“Shelley did a lot of the research and walked the grocery aisles. Gluten-free is really very natural, but when you have a kid who doesn’t love a lot of fruits and veggies, it’s a big adjustment to make sure he gets the right foods and food that tastes good,” he said.

While at first there was some reluctance on Oscar’s part to try new foods or new recipes, “once he realized this is something we have to do he started finding acceptable options.”

Ask Oscar, and he’ll tell you his mom’s gluten-free macaroni and cheese is awesome, as are her chocolate-chip cookies. Stax chips are a good substitute for Pringles, and he’s found gluten-free bread, pizza, pancakes and donuts he likes.

Most meals prepared at home are gluten-free, but a cabinet holds packaged snacks that Oscar’s siblings, who do not have a sensitivity to gluten, can eat.

With Oscar’s diagnosis, any immediate family member has a 10% chance of having it as well, Shelley said, but everyone was tested, and the results were negative.

“That doesn’t mean it can’t be triggered at some point because it is an auto immune disease, so they suggest we get them tested every few years,” she said.

Oscar returns to Riley for blood tests once or twice a year and is doing well, but the family remains vigilant because celiac disease is a lifelong illness.

“He will not grow out of it,” his mom said. “But he has learned to ask questions and to read labels. He has gained a lot of tools he can use.”

With help from friends, a dietitian and counselor, as well as Dr. Sparks, Oscar and his family have been able to navigate this new normal over the past few years, and they want to share what they’ve learned to help other families.

“It takes a minute to get used to it, but counseling helped me understand it’s not that bad,” Oscar said during a visit to Riley.

“There are a lot of people who walk into this and it seems overwhelming,” his dad added. “If we can help someone not have to tackle some of these things blindly, absolutely, we want to help ease that burden. It is overwhelming at first, but you can get there. You can do it and have a pretty normal life.”

For those just starting out with a gluten-free diet, the best advice is to be cautious and ask questions, Dr. Sparks advised.

“Each new patient is referred to our dietitian team for initial gluten-free diet education, and they are available for further guidance as needed.”

Just knowing they have resources available at Riley has been really helpful, Shelley agreed.

“It’s hard to do it alone,” she said. “Being able to talk about it really helps. I had heard of celiac, but I didn’t know all the hoops you had to jump through to provide a safe environment for your child.”

Oscar, who just completed seventh grade, stands 5-feet 6-inches tall and weighs 105 pounds. When he was diagnosed, he was 4-foot-4-inches. He hit puberty, which helped, his dad said, but he also gained 50 pounds and grew 14 inches in 3½ years.

That’s the kind of progress Dr. Sparks likes to see. With the right education, diet and support, celiac disease is manageable.

“I have always found it appealing that a chronic inflammatory disease that has such major effects on quality of life is treated by eliminating a single protein from the diet,” Dr. Sparks said. “Celiac disease is a great example of how food can be used as medicine.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org