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CHOP gets $100,000 donation to Center for Celiac Disease

CHOP Gets $100,000 donation to Celiac Center
CHOP Gets $100,000 donation to Celiac Center 02:15

PHILADELPHIA (CBS) -- A big donation today at Children's Hospital of Philadelphia to fund more research for celiac disease.

The research is aimed at finding a treatment for celiac disease.

One Penn Valley family is also working to get better food labeling.

He's only 10 but Jax Bari is on a very grown-up mission meeting with President Biden and other leaders in his fight against celiac disease.

"It can be really hard sometimes," Jax says.

Jax is among three million Americans with the potentially deadly food allergy to gluten caused by an autoimmune disease.

The 4th grader was incapacitated for days recently after accidentally eating something with gluten.

"It was awful," he says.

"You're just thinking about every next meal, every bite that goes into his mouth. It's all-consuming," Jax's mom Leslie Bari says.

With no treatment for celiac Jax and his parents hope this $100,000 donation helps with research at CHOP's Center for Celiac Disease.

"I'm proud we were able to secure this grant from the PA Department of Health to further the work CHOP is doing to ease the burden of celiac disease," Pennsylvania State Senator Amanda Cappelletti says.

Gluten is found in wheat, barley, rye and most oats. It can be difficult to avoid.

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"We need new options. We need new medication options, and we need new treatments so we can hopefully find a cure for celiac disease," Co-Director of the Celiac Center at CHOP Dr. Arun Singh says.

Celiac advocates also want the FDA to require gluten labeling on all packaged foods.

"We're trying to decipher food labels and we could spend hours and hours in a grocery store trying to figure out if something has gluten in it or not," says Jax's mom Leslie.

They say food labeling would eliminate the guessing game of eating that comes with fear because of the lack of treatments.

"We have a vision that Jax is among the first generation that will have a treatment option other than a gluten-free diet," Jax's dad Jonathan Bari says.

For Jax, it's one simple wish, "eating without fear is our hope."

The gluten-free label you see on some food items is voluntary. 

The celiac community wants that to be mandatory and that each of the gluten grains be listed on the packaging.

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