Celiac Journey

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

09/11/2025

On behalf of 729,000 American kids with Celiac Disease, we are so happy that the Make Our Children Healthy Again Strategy Report included Celiac Disease and requiring the labeling of Gluten as a food allergen:

"Food Allergies: FDA will develop guidance on diagnostics and treatments for food allergies. FDA will also make recommendations about requiring transparency in disclosures of ingredients that impact certain health conditions, such as gluten for those with Celiac disease, and other established food allergens."

Since 2020, Jax has been advocating for Gluten to be declared as a Major Food Allergen in the United States and requiring the labeling of Gluten. Jax has joined forces with kids around the country calling for change including his partner, Jude, a rising 6th grader in New York. Jax and Jude are speaking out on real-life kitchen table issues in new ways to Make America Healthy Again. Out of the mouths of babes...

87 other countries around the world require the labeling of Gluten on all food packages, including in Canada, Mexico and across Europe. The United States is so far behind.

Until there's a treatment for Celiac Disease other than a Gluten Free diet, we believe that requiring the labeling of Barley, Rye and Oats will have the greatest impact on improving safety and quality of life for 3.3 million American Celiacs and their loved ones.

Jax and Jude have presented a common sense solution that is actionable and not controversial. Secretary Kennedy has existing statutory authority to require the labeling of Gluten as a Major Food Allergen and this takes us closer to achieving that goal!



https://www.instagram.com/p/DOZ-4GujnKa/

08/06/2025

President John F. Kennedy's medical records suggest JFK had undiagnosed Celiac Disease: Jackie Kennedy described it as the "Kennedy Stomach." Here's an article I wrote after revisiting some interesting research from the past two decades.

"I've got something wrong with my intestines. In other words I s**t blood." -- John F. Kennedy (letter to LeMoyne Billings, June 27, 1934)Overview: MAHA Report, Celiac Disease & President John F. KennedyWhen President Donald J. Trump and HHS Secretary Robert F. Kennedy, Jr. released the Make Our Chi...

07/29/2025

Some exciting news! Please join us for what is hopefully the 1st annual Celiac Awareness Night at the Phillies, with a portion of the proceeds to benefit Penn Medicine's Celiac Research Program!

DATE: Friday September 12, 2025
TIME: 6:45 PM
LOCATION: Citizens Bank Park

To purchase tickets, click here and enter CELIAC

https://mlb.tickets.com/schedule/?agency=MLB_MPV&orgid=21 #/sales_group_code;salesGroupId=8314

We have group tickets available at a few price points, in sections 312-328 and 415-425.

We are also putting together a comprehensive list of gluten free food options at Citizens Bank Park. Reach out with any questions! Hope to see you there!

07/04/2025

Happy Fourth of July!

In the spirit of Independence Day, here's Jax outside America's Birthplace at Independence Hall in Philadelphia where it all happened on July 4, 1776!

Inspired by the Declaration of Independence, Jax leads the charge in declaring freedom from the Gluten guessing game with the voluntary labeling of Gluten in the US.

It's time for the United States to catch up to 87 other countries which require that Gluten be declared on all food labels.

It's time to better protect 3.3 million American Celiacs, including 729,000 kids like Jax!

Together let's take on the chronic childhood disease crisis for a generation at risk with food allergies and autoimmune diseases by requiring the labeling of Gluten as a Major Food Allergen!

05/21/2025

Shining a light on International Day for food allergy awareness, and remembering a few years ago when Jax was wearing his red sneakers to his meeting at the

Jax was asking for help in better protecting 3.3 million Americans with Celiac and Gluten grain allergies triggered by eating Gluten, a protein found in Wheat, Barley, Rye and most Oats. Today, only Wheat is required to be labeled in the US, but Barley, Rye and Oats are not. Our advocacy continues since the work is not done.

We draw strength from Oakley and his family in sharing their family's experiences! May Oakley's memory be a blessing!

05/19/2025

Please watch this video to see all the important work we are doing on a federal and state level to try and get gluten labeled on packaged foods just like it is in 87 other countries! Thanks for all your work and support on this issue Senator Amanda Cappelletti