Lessons from a 13-year old lobbying for gluten labeling, with Jon and Jax Bari

At the 2023 HHS Food Is Medicine Summit, one item on the buffet was considered safe for 10-year-old Jax Bari to eat: an apple.

Everything else was a gamble because gluten isn't required on food labels in the U.S. the way it is in 87 other countries. For someone with celiac disease, that disclosure means a whole lot — a tiny bit of gluten can mean days of vomiting, diarrhea and severe pain.

Jax is now 13, and he's still on a mission to convince Washington that gluten labeling should be mandatory. He and his dad, Jon Bari, founded the non-profit Celiac Journey, and have spent the past several years lobbying both the Biden and Trump administrations. They’ve filed a citizen petition with the FDA, met with lawmakers, and even cornered the FDA commissioner in an elevator — all in pursuit of one specific ask: add gluten to the FDA's list of major food allergens.

Highlights:

– Jax's advocacy started with a second-grade persuasive-letter assignment addressed to David Muir, which turned into national ABC News coverage and a White House invitation.

– The FDA's January 2026 request for information on gluten labeling drew more than 6,000 public comments, with about 99.5% in support.

– Per Jon Bari: The opposition includes the Consumer Brands Association and, more surprisingly, the Celiac Disease Foundation itself, which is funded by General Mills, the largest oat seller in the U.S.

– Three possible paths forward are now on the table: Secretary Kennedy's existing rulemaking authority, a potential executive order, or new legislation, including the bipartisan Faster Act and the separately introduced Celiac Safety Act.

Where to find Jon and Jax Bari:

Celiac Journey

Instagram: @celiacjourney

Instagram: @glutenfreefinds_pa