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).

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.

Research Suggests that Iron Deficiency Anemia May Cause Celiac Disease: A Causal Relationship Should Now Be Confirmed wi...
11/07/2025

Research Suggests that Iron Deficiency Anemia May Cause Celiac Disease: A Causal Relationship Should Now Be Confirmed with Clinical Trials

In August 2018, Jax was 5-years old and poised to start Kindergarten. Then our whole world changed when he was diagnosed with Celiac Disease. We learned that Jax was anemic, and he had Marsh 3 level damage to his small intestine. At age 5, Jax's anemia and short stature appeared to be a function of his body's inability to absorb nutrients.

In the world of autoimmune and digestive diseases, there is a common school of thought that Celiac and Inflammatory Bowel Disease (IBD) can each cause anemia due to villous atrophy. However, new research from the University of Washington and University of Florida suggests that anemia may not necessarily be the downstream consequence of Celiac and/or IBD, but could in fact trigger Celiac Disease and/or IBD.

If recent research now suggests that iron deficiency anemia may potentially play a role in the pathogenesis of Celiac Disease, could that have been the case with Jax and others similarly situated?

Read the full article at www.celiacjourney.com/anemia



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