Celiac Journey

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Advocating for more Federal funding for Celiac Disease research that is proportionate to its treatment burden and lack of treatment options & Gluten declared as the 10th major food allergen on all packaged foods in the US (like in Europe & Canada).

We are grateful to  for his leadership of the FDA.Congratulations to Kyle Diamantas on being named Acting Commissioner o...
05/13/2026

We are grateful to for his leadership of the FDA.

Congratulations to Kyle Diamantas on being named Acting Commissioner of the

We have gotten to know Kyle because of Jax's FDA Citizen Petition to require the labeling of Barley, Rye and Oats as Major Food Allergens. Kyle has listened to Jax's common sense solution. Kyle understands how 87 other countries require the labeling of Barley, Rye and Oats, and that the U.S. is so far behind.

Before taking on this role, Kyle served as the FDA’s Deputy Commissioner for Human Foods, where he oversaw nutrition and food policy, food safety, inspections. Kyle has been instrumental in efforts to remove petroleum-based artificial dyes from food products.

In addition, Kyle has also been working on a new definition of ultra-processed foods. This is important to the Celiac community! Since Gluten is not yet declared as a Major Food Allergen in the United States, Celiacs have been forced to rely on products that are voluntarily labeled Gluten Free. Often times, these products are ultra-processed foods that have been specifically created to be marketed in a premium marketplace of high-priced Gluten Free food items.

Kyle has also championed the new Dietary Guidelines that flipped the food pyramid and encourages Americans to eat real food!
Why is this announcement important?
Because the FDA Commissioner plays a major role in decisions that impact the health of every American, including 3.3 million Americans with Celiac Disease.

Dr. Makary set the table on new gluten labeling requirements when he said, "People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options. We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices."

We look forward to working with Kyle to have the FDA issue rulemaking to require the labeling of Barley, Rye and Oats as Major Food Allergens!

URGENT: 4/22 DEADLINEThe deadline is 4/22 to submit comments on the  Request for Information (RFI) regarding labeling Gl...
04/19/2026

URGENT: 4/22 DEADLINE

The deadline is 4/22 to submit comments on the Request for Information (RFI) regarding labeling Gluten and preventing cross contact of Gluten in packaged foods. Please submit your comments if you haven't already! To date, more than 5,800 comments have been submitted.

https://www.federalregister.gov/documents/2026/01/22/2026-01121/labeling-and-preventing-cross-contact-of-gluten-for-packaged-foods-request-for-information

is encouraging people to share their experiences with the FDA..

“People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, MD, MPH. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.”

National Nutrition Month is coming to a close, but the work to Eat Real Food and Make Our Children Healthy Again continu...
03/28/2026

National Nutrition Month is coming to a close, but the work to Eat Real Food and Make Our Children Healthy Again continues all year round.

The link between health and well-being is directly tied to proper nutrition, especially for our children. And for the Celiac community, must now issue rulemaking to require the labeling of Barley, Rye and Oats as Major Food Allergens on all packaged foods.

02/03/2026

Grateful to and for highlighting a win for the Gluten Free community with the taking next steps in demanding that all Gluten grains be labeled. This new radical transparency will require the declaration of wheat, barley, rye and oats on all packaged foods in the US, just like Gluten must be declared on all foods labels in 87 other countries.

Thank you MAHA Action for sharing this news about FDA Request for Information. Please click here to submit your comment....
01/29/2026

Thank you MAHA Action for sharing this news about FDA Request for Information. Please click here to submit your comment. To the FDA why they should require gluten to be labeled as a major food allergen on Package foods in the United States
https://www.regulations.gov/commenton/FDA-2023-P-3942-1120

Here's the back story on how the FDA issued a Request for Information to take next steps to require Gluten labeling, and...
01/24/2026

Here's the back story on how the FDA issued a Request for Information to take next steps to require Gluten labeling, and how this was in response to a Citizen Petition filed by 12 year old son Jax from Philadelphia. Jax's common sense solution has been taken seriously by the Secretary of HHS and FDA Commissioner.

It's not every day that the nationwide kickoff of the Take Back Your Health Tour with U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. comes to your home state. Just before the rally started in Harrisburg on January 21, 2026, Secretary Kennedy issued a press releas...

01/23/2026

Breaking news! We need your help!

Yesterday, the announced it is taking steps to Improve Gluten Ingredient Disclosure in Foods by issuing an Request or Information (RFI) regarding labeling Gluten and preventing cross-contact of Gluten in packaged food, as a follow up to Jax Bari's FDA Citizen Petition filed in 2023.

“Today, we advance the MAHA Strategy’s directive by demanding radical transparency in packaged food ingredients that affect health conditions and diet-related allergies,” Health and Human Services Secretary Robert Kennedy Jr. said. “Americans deserve clear, reliable information about what’s in their food and how it’s made. Public input calling for honest labeling will protect consumers, prevent harm, and Make America Healthy Again.”

87 other countries require the labeling of Gluten (Wheat, Barley, Rye and Oats). Since 2006, only Wheat has been required to be labeled, but but Barley, Rye and Oats. It's time for the US to catch up.

Here's how you can help:
The FDA is allowing 60 days for feedback and comments on the RFI. Specifically the FDA is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S.

“People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.”

Comment FDA on this post and we'll send you the link.

01/15/2026

An Open Letter to Luke Miels at GSK from 12-Year Old Jax Bari

Dear Mr. Miels,

Hey GSK, It's a New Year with New Leadership, Let's Restart Celiac Disease Research in 2026

As we begin a new year -- and with GSK now under new leadership -- I ask that you consider restarting Celiac Disease research in 2026. This will give hope to my community of 3.3 million Americans with Celiac, including about 729,000 kids like me.

On February 1, 2023, Fierce Biotech reported that GSK terminated its Celiac Disease R&D program (3195393, TG2 inhibitor) and quoted former GSK CEO Emma Walmsley:

"I don't think there are any further plans to pursue celiac disease. It will be, again, simply a question of really putting as much discipline as we can into our capital allocation. We do that now across the full portfolio of vaccines and medicines, and we just try and look to see where we're going to not only get the right impact for patients, but the right of return on that R&D investment with the right kind of portfolio mix in terms of risks and rewards." --

GSK can certainly afford to restart Celiac Disease, and in the currency of hope and impact, that would be really meaningful to the Celiac Disease community!

See link in bio for full blog post.

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