Avera Medical Minute: How one family is coping with their daughter's Celiac Disease

MILBANK, S.D. - About 1% of the population has Celiac Disease and has to live on a gluten-free diet. The disease is hereditary and can be passed down to kids. Oakley Wildung inherited it from her dad, who didn't even know he had it.

Oakley is a lively 2 year old. It was a different story about one year ago though when she started eating solid food.

"We started to notice her attitude change. Her temperament kind of got a little higher. She started to throw up roughly three, four times a week, and it would just be out of the blue," Shelly Wildung said, who is Oakley's mom.

Her parents thought it might just be the flu.

"A lot of doctor's visits and being told its viral. It's viral, and there was finally a breaking point that something's not right," Shelly said.

"When she was sick, and we didn't know what was going on, we kind of thought that there was maybe something more serious wrong with her," Reid Wildung said, who is Oakley's dad.

Finally, Oakley was diagnosed with Celiac Disease after a blood test.

"It was weird because I had never heard of Celiac Disease," Shelly said.

It's a disease that doesn't have a cure. Patients have to follow a gluten-free diet because the small intestine can't digest the protein properly.

"There are these small finger-like projections that are found in that area called villi. Villi helps with absorption of nutrients in the foods that we eat," Dr. Sarah Cole said, who is a pediatric gastroenterologist. "For her, and this was proven on biopsies, those villi were shortened or blended and we can see that. So unfortunately, when your villi aren't long and tall and finger-like projections, it can affect the way we absorb nutrients."

Dr. Cole said there are more than 200 symptoms associated with Celiac Disease. But some of the more common ones are vomiting, diarrhea, constipation, or bloating. Those were symptoms Oakley was experiencing.

"So we've changed a lot. I mean, as far as you know, eating out isn't as easy any more. It's a lot of preplanning, I guess would be the hardest part," Shelly said.

"Even a small amount of gluten can trigger that inflammatory response," Dr. Cole said.

Oakley has been seeing Dr. Cole in Sioux Falls since she was diagnosed last year.

"That is our role here is to help provide support for her from a nutrition standpoint as well as manage other complications associated with the disease, like I mentioned iron deficiency anemia," she said.

Oakley's parents said she's doing much better since beginning a gluten-free diet.

"It really turned around in a sense she started feeling better, gaining weight, and being a lot more happy," Reid said.

But there's still a lot of learning.

"It's a lot of reading labels. One of the biggest struggles is that she can't communicate with us. So she can't tell me if she ate something and that hurts her stomach," Shelly said.

But they've already found many replacements for some of her favorite foods.

Reid said since he was diagnosed, it's hard for him to change his diet. He said Oakley is learning this from day one, but he's in his 40's and has already been eating products with gluten.

Dr. Cole is holding a free educational event Saturday that is focused on Celiac Disease. People can learn how to avoid gluten if they think their child has Celiac Disease or a sensitivity to gluten. It will be from 1:00 PM to 4:00 PM at Avera's Prairie Center in Sioux Falls. The address is 1000 East 23rd Street.