Oggie: A Complex Journey Through Celiac Disease

When Ogden came to the hospital a second time for double pneumonia (pneumonia that affects both lungs), something didn’t add up. Ogden, or Oggie as his parents call him, received antibiotics the first time he got pneumonia just a couple months prior, and it should have been enough to prevent a second infection. Doctors were perplexed and suggested he might have celiac disease, an autoimmune disorder.

Searching for a cause of autoimmune symptoms

“When the doctor suggested Oggie might have celiac disease, we thought, ‘What does being gluten-free have to do with double pneumonia and respiratory failure?’” Oggie’s dad, Sean, recalls. “We have friends who are gluten-free and they have stomach pains or cramps. It was just new to us — we were so ignorant to the actual facts about celiac disease.”

Like many parents, Sean and Patrick had heard of celiac disease but weren’t aware that it is an autoimmune disorder with far-reaching impacts. People with celiac disease can range from being asymptomatic (showing no symptoms) to having severe symptoms that greatly impact their health and immune system. For those with celiac disease, the reaction to gluten can cause inflammation that damages the villi in the small intestine. Villi look like many small fingers that line the small intestine. They create more surface area to help the body absorb nutrients from food. When someone doesn’t have villi or they are damaged, it is much harder to get enough nutrients.

“When they did the endoscopy, the doctor came back and showed us what the intestine should look like,” Sean says. “The surface is supposed to be covered with all these villi — I remember it looking like a 70’s shag rug. But when they showed us Oggie’s, it looked like an ice-skating rink. That basically means he could be eating the healthiest diet in the world and would just not be getting enough nutrients. So he wouldn’t be strengthening his body and his body's not producing enough red blood cells and his immune system is permanently compromised as a result.”

Learning to navigate celiac disease

After receiving Oggie’s celiac diagnoses, Sean and Patrick went into research mode. They took a series of trainings about how to live gluten-free, how to make gluten-free food, how to identify things in the house that could cause problems and what to avoid in the supermarket. This is extra important for the family, because Oggie also has Down syndrome and is nonverbal. That means that if he eats something that accidentally has gluten in it, it’s much harder for him to communicate how it makes him feel.

“We wanted to understand the basics of living gluten-free,” says Sean. “It was good because there are some things you may not think about. Like, he loves waffles, so we needed to buy a new toaster that had never had gluten in it before. We learned about preparing foods and celiac-safe spaces and learning about the risk of cross-contamination when you go to a restaurant.”

Sean and Patrick say they’re still learning, and every time they meet with someone at Children’s Hospital Colorado, they learn something new. For example, they recently replaced their wooden spoons because they learned from a Children’s Colorado dietitian that these spoons can retain micrograms of gluten just from something as simple as stirring pasta. It may not seem like much, but recurring exposure to even just micrograms of gluten can result in a reaction.

“I just keep thinking back to that picture of his endoscopy,” Sean says. “And so we just leaned in fully to the commitment and made every choice we could to make it the best it could be for him.”

Thorough follow-up care leads to another autoimmune diagnosis

Patrick and Sean also learned that children with Down syndrome have an increased risk for autoimmune diseases. In fact, children with Down syndrome are 6 to 10 times more likely to have celiac disease, and having one autoimmune disease also often means a person is at higher risk for other autoimmune diseases. That’s why one of Oggie’s doctors, Marisa Stahl, MD, suggested he take part in the ASK Research Program to see if he had other autoimmune diseases.

The screening revealed that Oggie also has early-stage Type 1 diabetes — another autoimmune disease that carries heightened risk among children with Down syndrome.

“We’re so glad Dr. Stahl proposed the ASK study because it probably saved Oggie’s life. He’s not able to tell us when he’s feeling bad, and if he went into diabetic ketoacidosis overnight when he's sleeping, we would have had no idea,” Sean says. “It was just terrifying to think about.”

Comprehensive care at Children’s Colorado

Through the Sie Center for Down Syndrome and the Department of Pediatric Endocrinology, which helps Oggie manage thyroid issues and diabetes, Oggie gets all the care he needs to feel his best. Thankfully, Oggie has been doing much better as a result.

“I'm hopeful we’ve found everything that we're going to find right now,” Sean says. “We got the celiac diagnosis, then the diabetes, but he just needs to be a little kid for a while. It's never going to be perfect, and every day is different, but you just try the best you can.”