Family fights isolation brought on by celiac disease

Rebecca Crockett
April 30, 2019 - 8:49 pm

Wojciech Kozielczyk/Getty

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Kansas City, MO - Jilian Hunt's daughter was in the first grade when she was diagnosed with celiac, an auto-immune disease triggered by a protein found in gluten. That means no more sandwiches, cake, or french toast...at least not in the same way as before. If ingested, she could have a number of reactions from neurological symptoms to joint pain. Hunt says the diagnosis was a difficult adjustment, but the whole family jumped on board to make it easier. 

"Because of cross contamination we had to replace a lot of appliances and things in our house like our toaster and our wooden spoons, cutting boards," explains Hunt. 

The family threw a celiac party where friends and family brought dishes to introduce their daughter to new gluten-free food options. 

Her daughter says kids at school don't always understand and sometimes tease her for having to bring her own snacks to birthday celebrations. She says it makes her feel sad because it's something she can't control. 

Hunt says at least three-million Americans are living with the disease. The only treatment is a gluten-free diet, and though many restaurants have gluten-free options, Hunt explains that cross contamination is an issue. Even the gluten-free trend has caused some to diminish the seriousness of the disease. Hunt says there have been several times when they're requests weren't taken seriously. 

When they're not at home, her big sister has her back and watches over her. She says her little sister doesn't want to hurt peoples feeling so she doesn't speak up. As the big sister, she speaks up for her. 

Hunt wanted to do something for her daughter, so she created the Step Beyond Celiac 5K in 2017 to giver her just one day where she doesn't feel alone. 

"I can eat everything there, and everyone else there is eating the exact same thing that I am, so I don't feel as lonely and I don't feel like I'm the only one with celiac," her daughter explains.

The event will be in it's third year on September 29th at the Community America Ballpark, and features gluten-free food vendors and a silent auction. She says it's a great opportunity to educate others on the disease and to raise funds to help find a cure. Registration for this years 5K opens May 1st

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