Jax Bari wants the U.S. Food and Drug Administration to take the guesswork out of safely eating for people like him who must avoid gluten as they navigate life with celiac disease. The 10-year-old advocate is urging others to support his family’s citizen petition, which calls on the FDA to label gluten as a major allergen on packaged foods.
“We’re going to make lives so much safer and so much richer as a result of requiring labeling,” says Jax’s dad, Jon Bari.
The petition, filed in September 2023, aims to make it a requirement for gluten-containing grains, including wheat, barley, rye and oats, to be labeled on all packaged foods in the United States. The requirement would alter the existing federal Food, Drug, and Cosmetic Act (FALCPA) labeling law.
The current law requires any of the top nine allergens to be clearly labeled if they are present in packaged foods. Wheat is among the top nine allergens, but barley, rye and oats are not required allergens on ingredient labels.
The petition aligns with the goals of the nonprofit Beyond Celiac – “To eat without fear, and to live a life free from the burden of the gluten-free diet,” CEO Alice Bast told Allergic Living.
“I applaud Jax’s advocacy efforts,” Bast says. The Philadelphia fifth-grader has discussed food policy with local, national and world leaders.
Petition on Gluten Labeling
Jax, along with his older sister Lexi, dad Jon and mom Leslie, have been celiac disease advocates since Jax was diagnosed at the age of 5 in 2018. The family has focused on raising funds for research to find a treatment for the autoimmune disease.
When a person with celiac disease ingests gluten, the villi, small, hairlike projections that line the small intestine, become damaged. That damage interferes with a person’s uptake of nutrients. Celiac disease can lead to a range of other disorders, including infertility, other autoimmune conditions, anemia, neurological disorders and even some cancers, notes Beyond Celiac.
Currently, the only option is to adhere to a gluten-free diet.
The Baris work with the Children’s Hospital of Philadelphia (CHOP), where Jax is treated, in their efforts to increase research. In July 2023, they helped raise a $100,000 donation for the Center for Celiac Disease at CHOP, Jon Bari says.
The Baris believe labeling gluten is essential to the health of their son and the approximately 3 million Americans living with celiac.
“The single greatest consumer protection that can happen is to get gluten to be required to be labeled so that there are no guessing games,” Jon Bari says.
Jax Lobbies Biden, Lawmakers
Jax has even taken his quest to the White House. In October 2022, Jax approached President Biden following a rally for a Pennsylvania lawmaker. At first the president just thought this was a kid who wanted a photo. But he quickly realized that was not the case, Jax’s dad says. “They actually had a substantive conversation.”
Jax talked to the president about his journey living with celiac, and asked for his help making gluten labeling a requirement. He handed President Biden a sheet that explains the objective for labeling gluten. “He seemed like he wanted to help,” Jax says.
Jax and his parents later took a trip to Washington, D.C. discussing the issue with the White House Domestic Policy Council. “Jax has started to realize that he can speak up and speak out and that people listen,” his dad says.
He has continued to do so. In 2024, Jax raised the gluten labeling issue in front of 400 officials gathered for the government-sponsored Food is Medicine Summit in D.C.
The Baris connect their petition to President Biden’s call to action on health equity. They are asking policymakers to consider their cause through the lens of President Biden’s speech at the White House Conference on Hunger, Nutrition and Health.
The speech resonated with Jax’s parents, who attended the September 2022 event. For example, Jon Bari recalls the president’s remarks including, “If you look at your child and you can’t feed your child, what else matters?” That especially hit home.
They submitted the citizen petition on September 28, 2023, the first anniversary of the White House health conference.
Other Countries: Broader Gluten Labels
The petition points to the precedent more than 85 countries throughout the world have set in labeling gluten. For example, the 14 allergens recognized under labeling requirements in the European Union include cereal containing gluten, such as wheat, rye, barley and oats.
Beyond Celiac’s Bast agrees that the United States should follow the lead of other countries to protect consumers. “It’s time that the U.S. stops lagging behind and does what is safest for those on the gluten-free diet,” she says.
Beyond Celiac has been advocating for the Food Labeling Modernization Act of 2023 (FLMA). Like the citizen petition, which the nonprofit also supports, the bill aims to amend United States allergen labeling laws to include gluten.
Lawmakers reintroduced the Food Labeling Modernization Act to the U.S. Senate in April 2023, after a version of the bill did not become law in 2021. It was first introduced in 2013.
Whether the citizen petition or the food labeling modernization legislation are successful, Bast says the end result is important.
“What matters is that our community has access to as much information as possible when making decisions about their health,” Bast says. “Needless to say, our community is united in making this a reality.”
Jax’s Glutening Experiences
In an effort to help policymakers understand how gluten labeling would impact those with celiac disease, Jax has shared his own experiences.
For example, he recounts being sick after eating breakfast during a trip to Denver in April 2023. He doesn’t know if it was the pancakes or syrup he ate, or whether gluten cross-contact was the culprit. All he knows is that his spring break ended in agony.
“I was basically living in the bathroom for two days puking and having diarrhea,” Jax tells Allergic Living. Once his son got over the physical symptoms, “there’s the psychological impact about food safety,” Jon Bari says.
Despite instances of unintentionally ingesting gluten, Jax keeps a positive outlook as he enjoys tennis, soccer, and listening to Taylor Swift. “I just have to live life to the fullest. We’re really careful,” he says.
In the meantime, Jax and his family will continue to advocate for policy change and celiac disease research.
The family encourages others to share their experiences to help convince policymakers that gluten must be labeled. They can submit comments to the FDA on the petition website.
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