The youngest speaker at Wednesday evening’s weekly MAHA Media Hub was easily the courageous 12-year-old, Jax Bari, who has been living with celiac disease since before he started kindergarten.
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Bari’s words to our community, delivered on February 4, were so resonant and inspiring for the future of the MAHA movement, we reprint them here for those who couldn’t attend.
Here, too, is the 6-minute video of Bari’s presentation.
Jax Bari:
I’m grateful for this opportunity to share my goal – eating without fear.
Since 2020, I’ve been advocating to require the labeling of gluten as a major food allergen on all packaged foods in the U.S. The amazing new dietary guidelines just flipped the food pyramid.
Similarly, the FDA is turning the tide on the gluten guessing game. Just two weeks ago, the MAHA momentum continued forward with the FDA taking next steps to require gluten labeling, demanding ingredient transparency. I’m so grateful.
Like 729,000 American children, I have celiac disease, which is a potentially life-threatening food allergy and an autoimmune disease. Just before I started kindergarten, I was diagnosed with celiac when I wasn’t growing. As I learned to read, I started with fairy tales and food labels, which are often incomplete and confusing.
Celiac impacts more than 3.3 million Americans, which is more than 1% of the U.S. population. Celiac is triggered by eating gluten, a protein found in wheat, barley, rye, and most oats. The only treatment for celiac is a strict gluten-free diet for life.
In 1985, the FDA issued a final rule, which found that labeling gluten ingredients is more desirable than gluten-free labeling, and that all gluten ingredients must be identified by name when used in food. That was 41 years ago, but the FDA has never enforced this.
Since 2006, wheat has been required to be labeled, but not barley, rye, or oats. That’s created a massive food safety gap. Did you know that 44% of those who follow a stripped gluten-free diet still get glutened once a month?
Gluten ingestion for celiacs causes more than 200 debilitating symptoms, including anemia, cancer, intestinal damage, malnutrition, and so much more. Unlike traditional IgE-mediated food allergies, there’s no rescue medication for celiacs in the accidental event of ingestion of gluten, and one cannot outgrow celiac.
Gluten is like kryptonite to me. If I eat just one crumb of gluten, just a crumb, I can get very sick living on the bathroom floor, with vomiting and diarrhea for days. It’s awful.
Gluten also damages my small intestine. When I was five years old, I had a marsh three-level damage to my small intestine from gluten. I was told that the doctors only see marsh four-level damage when they do an autopsy. It was really bad.
Celiac is every bite, every day – constant worrying, constant questioning, constant uncertainty, constant high cost. Since gluten is not declared as a major food allergen in the U.S., celiacs have been forced to rely on products that are voluntarily labeled gluten-free. Oftentimes, these products are ultra-processed foods that are sold at premium prices. Celiac is a disease, not a diet.
Imagine if you had a tree nut allergy and only almonds and pistachios were required to be labeled, but not other tree nuts such as walnuts and pecans. That would create a massive food safety gap that needed to be closed. Fortunately for those with a tree-nut allergy, that scenario is not the case. But that similar safety gap does exist with the voluntary labeling of barley, rye, and oats.
That’s why I filed a citizen petition with the FDA to require the labeling of gluten on all packaged foods in the U.S. In August, I met with the White House Domestic Policy Council about my common sense solution to the childhood chronic disease crisis. I’m grateful that the MAHA Commission included my Common Sense Solution as one of the 128 bold initiatives in the Make Our Children Healthy Again strategy report. This marks the first time ever that a White House, Democrat or Republican, has included celiac disease in its policymaking. This is bipartisan, actionable, and not controversial. This is so common sense that 87 other countries require the labeling of gluten, including Canada, Mexico, and across Europe.
We are thrilled that the FDA issued a request for information on January 21 about gluten labeling in response to my FDA citizen petition.
We need the MAHA momentum to continue forward and for people to share their comments with the FDA on why barley, rye, and oats must be labeled, their challenges when shopping and reading labels, and their adverse reactions to gluten ingestion.
I want to thank President Trump, Secretary Kennedy, [FDA]Commissioner Makary, Kyle Diamantas, Calley Means, Dr. Heidi Overton, Jackson Allen, Karolee Geis, the White House Domestic Policy Council, the White House Office of the Public Liaison.
Thank you again, Mr. Lyons. With your help, let’s make eating without fear possible again, get gluten grains declared as major food allergens, and make America healthy again. Let’s do this. Thank you, Mr. Lyons.
For the latest in MAHA news featuring the movement’s key voices, please join the MAHA Media Hub, hosted by President of MAHA Action Tony Lyons, streaming every Wednesday from 4pm - 5:15pm Eastern.
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FDA HAS a formal regulation ENFORCED since August 2014: 21 CFR 101.91 - Gluten-free labeling of food.
This defines what “gluten-free” means and how it can be used on food labels. Foods labeled “gluten-free,” “no gluten,” “free of gluten,” or “without gluten” must meet criteria that ensure they contain less than 20 ppm gluten (the lowest level reliably detectable in foods using scientifically validated analytical methods), AND Do not contain wheat, rye, barley or their crossbred hybrids or any ingredients derived from them unless processed to remove gluten).
This rule was written to protect celiac-disease patients and create a consistent standard across the food supply.
Likewise, only certified gluten-free oats (<20 ppm gluten) may carry that label, though avenin, the gluten protein found in very low concentrations in some oats (<0.5% by weight) is structurally different than the gliaden and glutenin, hordein and secelin found in wheat, barley and rye, respectively.
Thank you, Jax! Your advocacy will have a huge impact on so many.
Please explain the issue here.
FDA HAS a formal regulation ENFORCED since August 2014: 21 CFR 101.91 - Gluten-free labeling of food.
This defines what “gluten-free” means and how it can be used on food labels. Foods labeled “gluten-free,” “no gluten,” “free of gluten,” or “without gluten” must meet criteria that ensure they contain less than 20 ppm gluten (the lowest level reliably detectable in foods using scientifically validated analytical methods), AND Do not contain wheat, rye, barley or their crossbred hybrids or any ingredients derived from them unless processed to remove gluten).
This rule was written to protect celiac-disease patients and create a consistent standard across the food supply.
Likewise, only certified gluten-free oats (<20 ppm gluten) may carry that label, though avenin, the gluten protein found in very low concentrations in some oats (<0.5% by weight) is structurally different than the gliaden and glutenin, hordein and secelin found in wheat, barley and rye, respectively.
FDA, plain language; https://www.fda.gov/food/nutrition-education-resources-materials/gluten-and-food-labeling
Electronic Code of Federal Regulations link; https://ecfr.io/Title-21/Section-101.91
August 5, 2013 Final Rule published in Federal Register 78 FR 47154.
Beyond all of that, FDA is already in the process of tightening those regulations further; https://celiac.org/2026/01/21/fda-signals-new-action-on-gluten-labeling-and-cross-contact/