Commonly misdiagnosed condition is impacting society

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Living with gluten intolerance

Stores you shop at are changing, so are school and families as more people discover they have celiac disease, an auto-immune disease that makes you very sick if you eat gluten, a protein found in wheat, barley and rye.

(WDAY TV) - Stores you shop at are changing, so are school and families as more people discover they have celiac disease, an auto-immune disease that makes you very sick if you eat gluten, a protein found in wheat, barley and rye. Experts say 40 of you have the gene for it, and one in every 100 people are getting it.

In part two of living gluten free, WDAY 6 Reporter Kelsey Soby shows us how this often misdiagnosed condition with varying symptoms changed the life of a child is impacting lives and now society.

Saying no to your child is hard. Especially when all they're asking for is cereal or bread. It's enough to bring this mother to tears.

“Sometimes as a parent I do. I do feel bad.”

Stacey Juhnke's son was diagnosed with celiac disease at a year and a half.

“It was like the flu 24 hours a day.”

Up until then, it was a series of hospital beds and misdiagnosis.

“It was a little bit both of being scared, of not knowing what it was because I had never heard of it before, and being relieved because yes we finally know what it is.”

8-year old Austin and his mother now shop at Sydney’s Gluten Free Market in Fargo, finally a place where she doesn't have to say no.

“Austin had to grow up a lot to take care of his dietary needs.”

“Worst about it is that I don't get to try what you get to try.”

That includes this classic kid favorite, unless the pizza crust is made with gluten free flour.

“We went to a birthday party at Chuckie Cheeses. Well obviously he can't have pizza so we had to wait until after we left to get him food.”

“I've had dreams about that I would have their stuff.”

“Really, I think it might be better if I just think about my life, but not their life of what they're going to have.”

It's a difficult lifestyle becoming a little easier as stores adapt to the growing need for gluten free food. Experts say the number of people with celiac disease quadrupled in the last 50 years because of something in our environment or the foods we eat.

“We’re constantly adding, that's our fastest growing category.”

Gluten free sections at regular grocery stores are noticeably bigger even compared to last year.

“If it says gluten free on the bottom, I almost do a happy dance.”

Meaning celiacs like Sara Vollmer no longer spend hours reading labels.

“When I first found rice Chex on the grocery store shelves and it said gluten free, I hugged the box. I looked like a total moron, but I couldn't help it.”

At Cashwise, a full-time natural foods manager is available to answer a growing number of questions about gluten free products and to make sure they are all clearly labeled.

“It becomes a serious thing, it's not a matter of taste or being picky, it's that there's a health issue and there's sickness involved.”

Taste and ingredients aren't the only differences; gluten free foods also tend to be more expensive.

“Don’t all eat gluten free because too expensive.”

Despite the cost, even schools are stepping up. With a doctor's note, Fargo provides Austin with a gluten free lunch everyday. Celiac support groups are also popping up across the country including one here in the valley.

Although the gluten free diet is emotionally trying, expensive, and one you cannot cheat, ask anyone with celiac disease and they'll tell you they're so much better off and as the group grows, their gluten free options should too.

There's also a growing number of people who are gluten intolerant, these people do not have an auto-immune disease, but may suffer similar symptoms to celiacs.

Tags: reporter stories, kelsey soby, health, glutin, celiac