Children across the country share experiences with celiac disease

May 19, 2021

ABC

(NEW YORK) — Jax Bari shared an emotional letter with “World News Tonight” about his experience with the autoimmune disorder celiac disease.

“Dear Mr. Muir, when I turned 8 in March, I wished for a cure for Celiac Disease for me and 3 million Americans with Celiac,” wrote Jax.

The 8-year-old said he watches the news every night and wanted to spread awareness of the disease that’s triggered by gluten and damages the small intestine.

“I watch you every night with my dad,” he wrote to ABC News’ David Muir. “You are a great storyteller and I have learned a lot from you, including about the NIH.”

At least 2 million Americans have celiac disease, according to the National Institutes of Health. Other estimates, including from the University of Chicago, say it could be nearly 3 million.

“Eating without fear is our hope. Food insecurity happens for Celiacs every day,” wrote Jax.

On Jan. 14, Jax and his family, among other families in the celiac community, went to Capitol Hill for a bipartisan congressional briefing on the disease. The group lobbied for more research funding and food labeling.

“Solving Celiac could be the gateway to understanding so many other diseases. But we need a treatment that’s better than the gluten free diet,” said Vanessa Weisbrod.

Both Weisbrod and her son, Brandon, have been diagnosed with celiac disease.

“We need a big funding to make a big difference,” Weisbrod said.

May is Celiac Awareness Month. Jax said he reached out to friends to also share their stories about living with the disease.

Maggy Beck, a third grader in Richmond, Virginia, said she struggles with being cautious around food.

“I wish when I went to parties, I didn’t have to bring my own food and I didn’t have to worry about cross-contamination,” said Maggy.

Matthias Brockington, a 10th grader from Norristown, Pennsylvania, and Ava, a sixth grader from Maryland, said the diet can be hard to follow — especially with limited gluten-free options.

“The only treatment for celiac is a strict gluten-free diet which is pretty tough,” said Brockington.

“A gluten-free diet is really hard because not all packaged foods are clearly labeled as containing gluten. This makes it really hard to find safe, gluten-free food for people with celiac disease,” said Ava.

For now, without a cure for the disease, Jax’s mother Leslie Bari is trying to help other families with celiac disease. She posts photos of gluten-free food or recipes that she finds.

“My favorite foods are burgers, pizza, chicken fingers and fries,” said Jax. ” My mom has been able to find or make gluten-free versions of my favorite foods. I love cooking with her.”