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By The Numbers: Food Allergies & Celiac Disease
Facts, Stats & Public PolicyWhen the White House released the Make Our Children Healthy Again Assessment on May 22, 2025, the MAHA Report declared that "the health of American children is in crisis" and cited that: • "Today, over 1 in 4 American children suffers from allergies, including seasonal allergies, eczema, and food allergies." • "Between 1997 and 2018, childhood food‑allergy prevalence rose 88%." • "Celiac disease rates have increased 5-fold in American children since the 1980s."Food Al
President John F. Kennedy's Medical Records Suggest He Had Undiagnosed Celiac Disease: Jackie Kennedy Described It As The "Kennedy Stomach"
"I've got something wrong with my intestines. In other words I shit blood." -- John F. Kennedy (letter to LeMoyne Billings)Overview: MAHA Report, Celiac Disease & President John F. KennedyWhen President Donald J. Trump and HHS Secretary Robert F. Kennedy, Jr. released the Make Our Children Healthy Again Assessment on May 22, 2025, the MAHA Report declared that "the health of American children is in crisis" and cited that: • Today, over 1 in 4 American children suffers from allergies, including s
Glyphosate Warning: Keep Out of Reach & Mouths of Children
Overview - Glyphosate & GlutenThe MAHA Commission's Make Our Children Healthy Again Strategy (MAHA Report Strategy) should: 1) reassess the safety of using Glyphosate as a pre-harvest weed killer on crops including Gluten containing grains (Wheat, Barley, Rye and Oats), and 2) require the labeling of Gluten containing grains on all packaged foods in the United States, just like Gluten must be declared as a Priority/Major Food Allergen on all food labels in 87 other countries. The MAHA Report Str
The Biden Administration FAILED to Protect Celiacs by Refusing to Require the Labeling of Gluten Grains as Major Food Allergens
OverviewThe Biden Administration FAILED to protect 3.3 million American Celiacs, including 729,000 children. Watch this video for just one example. The Biden Administration FAILED to enact Celiac Journey's common sense solution to require the labeling of Gluten grains on all packaged foods in the United States, just like Gluten must be declared on all food labels in 87 other countries (FDA Citizen Petition, FDA-2023-P-3942). The U.S. is so far behind the rest of the world!Starting when he was 9-
Imagining How an Executive Order from President Trump Could Make America Healthy Again for Celiacs
"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1If President Trump were to issue an Executive Order to require the Secretary of HHS Robert F. Kennedy, Jr. to issue rulemaking to require the labeling of Gluten, it might look something like this draft below. Presidential Actions: Executive Order Suggested Draft (Yellow highlights represent the critical parts of this draft EO)Protecting Millions of Americans with Celiac Disease & Gluten-Related Food
The MAHA Report Addresses the Chronic Childhood Disease Crisis with a Generation at Risk with Food Allergies & Autoimmune Diseases, Including Celiac Disease
Jax Bari, the 12-year-old MAHA Kid, applauds the MAHA Report, Make Our Children Health Again Assessment (MAHA Report Assessment) which was released on May 22, 2025 and declared that "the health of American children is in crisis." Following the MAHA Report Assessment, the Make Our Children Healthy Again Strategy (MAHA Report Strategy) will be released by August 12, 2025. The upcoming MAHA Report Strategy "shall address appropriately restructuring the Federal Government's response to the chronic c
For Amber Waves of Grain: U.S. Farmers Will Not Be Impacted by FDA Rulemaking Requiring the Labeling of Gluten
We are pro farm and pro farmer. We want farmers to keep growing, and we want 729,000 American kids with Celiac Disease to grow up safely. To Make America Healthy Again, we have petitioned the FDA to require the labeling of Gluten on all food products in the United States, just like Gluten must be declared as a Major Food Allergen on all packaged foods in 87 other countries. To those who may worry that Celiac Journey's requested rulemaking to require the labeling of Barley, Rye and Oats could pot
Insights from the FASTER Act on Sesame as a Major Food Allergen: Why Fears of Manufacturers Intentionally Adding Gluten Grains are a False Equivalency
OverviewPrior to the FASTER Act taking effect on January 1, 2023, it was reported that some food manufacturers had started to intentionally add Sesame to products that previously did not have Sesame in them, and then label those products as having Sesame ingredients. This was really frightening and disappointing to Celiac Journey since we had advocated as allies with the food allergy community for passage of the FASTER Act to require the labeling of Sesame on all packaged foods in the United Sta
Nobel Laureate Dr. Drew Weissman & Jax Bari Announce New mRNA Celiac Research at Penn's Institute for RNA Innovation
Jax Bari Remarks, Penn Institute for RNA Innovation Check Presentation, November 18, 2024"With your help, let’s make eating without fear possible again! Let’s do this!" -- Jax BariOn a nice Fall afternoon in November 2024, 11-year old Jax Bari left school a little early and missed his 6th grade science class so that he could join Nobel Laureate Dr. Drew Weissman at a special event announcing new mRNA Celiac Disease research at the Institute for RNA Innovation at Penn Medicine.Dr. Weissman and Ja
New Research Finds High Risk of Digestive Cancers in People with Celiac Disease
"All disease begins in the gut." --HippocratesCeliac Disease is a potentially life-threatening food allergy and auto-immune disease that is triggered by eating Gluten, a protein found in Wheat, Barley, Rye and most Oats. In addition to vomiting and diarrhea, individuals with Celiac can experience many adverse health effects from eating Gluten including anemia, immunological scarring, intestinal damage, malnutrition and cancer.High Risk of Digestive Cancers in Patients With Celiac DiseaseIn Dece
Jax Bari Applauds President Trump's Executive Order Establishing the Make America Healthy Again Commission & its Initial Mission on the Childhood Chronic Disease Crisis
OverviewOn February 13, 2025, President Donald J. Trump signed an Executive Order establishing the President's Make American Healthy Again (MAHA) Commission, and its initial mission will focus on the childhood chronic disease crisis.Shining a Light on the Childhood Chronic Disease Crisis11-year-old Jax Bari is "Exhibit 1" in how the Biden Administration and FDA failed to protect 729,000 American children with Celiac Disease, a potentially life-threatening food allergy and autoimmune disease trig
FDA Issued Deeply Flawed Food Allergen Labeling Guidance Days Before President Trump's Inauguration
"Together we will end the chronic disease epidemic and keep our children safe, healthy and disease-free." -- President Donald J. TrumpFDA's Final Food Allergen Guidance Fails to Make America Healthy AgainJust days before President Donald Trump was sworn into his second term, the FDA released its deeply flawed, biased and unfair Final Guidance: "Evaluating the Public Health Importance of Food Allergens Other Than the Major Food Allergens Listed in the Federal Food, Drug, and Cosmetic Act: Guidanc
Back to the Future with FDA's 1985 Final Rule - Labeling Gluten Ingredients is More "Desirable" Than "Gluten Free" Labeling & Gluten Ingredients Must Be Declared on Food Labels
They say that an elephant never forgets. In that spirit, let's refresh the FDA's institutional memory in order for them to issue new rulemaking to better protect 3.3 million Americans with Celiac Disease from consuming potentially life-threatening food allergens in Gluten."The agency finds that labeling packaged foods as 'gluten free' would not be as desirable as actually identifying on the food label the source of the gluten that is used in the food. Under 21 CFR 101.4(a), wheat gluten and othe
Oats Must be Considered a Gluten-Containing Grain Due to Inevitable Cross Contamination
"Absent dedicating land, harvesting equipment, transporting vehicles, storage units, packaging and production facilities, and the like only for use in connection with oats, cross contamination is inevitable." -- General MillsOverviewIn order to Make America Healthy Again, Jax Bari filed a Citizen Petition with the FDA to require the labeling of Gluten on all packaged foods in the US, just like Gluten must be declared on all food labels in 87 other countries. Gluten is a protein found in Wheat, B
MAKE AMERICA HEALTHY AGAIN - Reduce Chronic Diet-Related Disease by Requiring the Labeling of Gluten
RFK Jr. talks health care agenda following Trump win: ‘I’m not going to take away vaccines’"In some categories, there are entire departments, like the nutrition department at the FDA that have to go, that are not doing their job, they're not protecting our kids!" -- Robert F. Kennedy, Jr. The FDA Has Failed to Protect 729,000 American Children with Celiac DiseaseWe agree with Robert F. Kennedy, Jr. that the FDA has failed to protect our kids! In spite of our pleas for help and suggested common s
Jax Bari Speaks at the NIH & Reminds Scientific Experts Why They Go to Work Each Day
Jax Bari's NIH Presentation: Impact of Diet on Mucosal Immunity & Immune-mediated Digestive DiseasesOn August 21, 2024, as many rising 6th graders across the country were enjoying the waning days of their summer vacation, Jax spoke at the National Institutes of Health (NIH) about his lived experience with Celiac Disease.The NIH's Office of Nutrition Research (ONR) and the National Institute of Allergy and Infectious Diseases (NIAID), in collaboration with several other NIH Institutes and Offices
Supreme Court's Chevron Decision May Impact Food Safety, But Appears to Spare New Food Allergen Labeling Requirements Given FDA's Existing Statutory Authority That is Clear & Unambiguous
Question: Is the FDA's Existing Statutory Authority To Require the Labeling of Gluten Under the Food Allergen Labeling and Consumer Protection Act and the FASTER Act Clear and Unambiguous?Suggested Answer: YesOverviewOn June 28, 2024, the U.S. Supreme Court issued its highly-anticipated 6-3 ruling in the case Loper Bright Enterprises v. Raimondo ("Loper"), overturning Chevron U.S.A. Inc. v. Nat. Res. Def. Council, Inc. ("Chevron"). In Loper, the Supreme Court ruled that courts reviewing Federal
Hey FDA - Let's Follow the UK's Food Standards Agency and the UK's Food & Drink Federation: Best Practices for Labeling Gluten on Packaged Foods
Labeling Gluten on Packaged Foods is Commensurate with the American Food Industry's Existing Global Operations To gain a better understanding of the support from the global food industry for the mandatory declaration of Gluten on all food labels, it's instructive for the FDA to review the following best practice guidance from the Food & Drink Federation ("FDF") in the United Kingdom entitled, "Gluten Labelling Guidance: Best Practice for Prepacked Foods which Include or Exclude Cereals Containin
TODAY Show Spotlights, "11-Year-Old Advocates to Get Gluten Labeled as an Allergen in the U.S."
Dylan Dreyer Spotlights Celiac Disease on Today Show, 5-17-24We are grateful to NBC and TODAY Show Anchor Dylan Dreyer who helped shine a light on Celiac Disease and Jax's advocacy to require the labeling of Gluten in the U.S., just like Gluten must be declared on all food labels in 87 other countries.Some Inside BaseballDylan began the story: "We're back now with a story that hits close to home for my family!" As Dylan's live intro faded and the pre-recorded segment started with Jax and Dylan's
10-Year-Old Takes HHS Leadership & FDA Commissioner to Task at the HHS Food is Medicine Summit: "Do it with Ganas" Mr. Secretary - Please Require Gluten Labeling!
Key Takeaways from the HHS Food is Medicine Summit Remind Us Why the FDA Needs to Require the Labeling of Gluten! • ICYMI: Jax Bari, age 10, was invited by HHS Secretary Xavier Becerra to attend the first-ever Food is Medicine Summit, and after meeting with Secretary Becerra, Jax bravely spoke truth to power to our nation's health leadership in front of 400 people and asked them to help protect Celiacs by requiring the labeling of Gluten on all food products. • SMH: FDA Commissioner's response
Call to Action: Submit Comments to FDA to Support Citizen Petition to Label Gluten as Major Allergen
Make Your Voice Heard - Submit Your Comments to the FDA to Support Jax's Citizen Petition to Require the Labeling of Gluten on All Food Products ICYMI: In honor of the first anniversary of the White House Conference on Hunger, Nutrition, and Health, 10-year-old Jax Bari submitted a Citizen Petition to the FDA to require the labeling of Gluten on all food packages in the U.S., just like Gluten is required to be declared on food labels in 87 other countries worldwide. This Citizen Petition is a re
10-Year-Old Files Citizen Petition with the FDA to Label Gluten as a Major Food Allergen in the U.S.
In honor of National Celiac Awareness Day on September 13th and the upcoming first anniversary of the White House Conference on Hunger, Nutrition, and Health on September 28th, Jax Bari, age 10, has filed a Citizen Petition with Secretary Xavier Becerra of the Department of Health and Human Services and FDA Commissioner Robert M. Califf, M.D. to label Gluten as a Major Food Allergen. Background Labeling Gluten (Wheat, Barley, Rye and Oats) as a Major Food Allergen on all packaged foods in the U.
Jax Bari is #AmericaStrong on World News Tonight with David Muir: White House Meeting
"And America Strong tonight, the boy you met right here. So many other children across the country seeing his story and what so many of you have done. That boy, brought to the White House." -- David Muir On May 31, 2023, World News Tonight with David Muir reported a follow up #AmericaStrong story on Jax's Celiac Journey, "Young Celiac Disease Activist Invited to the White House." The story included Jax meeting with President Biden and being invited to the White House to make his case to label Gl
CBS News Reports, "10-Year-Old with Celiac on Mission to Get Better Food Labeling"
On May 31, 2023, CBS Philadelphia Health Reporter Stephanie Stahl reported on Jax's Celiac Journey, "10-Year-Old with Celiac on Mission to Get Better Food Labeling." We are grateful to Stephanie and CBS Philadelphia for reporting about Jax's efforts to get Gluten labeled as a Major Food Allergen on all packaged foods in the U.S., Jax's meeting with President Biden, and his work with Pennsylvania State Senator Amanda Cappelletti to secure a $100,000 donation to Children's Hospital of Philadelphia
Celebrating Highlights of Jax Bari's Health Equity Advocacy During Celiac Disease Awareness Month
In reflecting on the progress of our family's patient advocacy organization, I am reminded of Laurene Powell Jobs' Commencement Address to the Class of 2021 at the University of Pennsylvania, "Change in ourselves and change in the world happens similarly. It comes slowly, slowly, and then all at once. What matters is your readiness for the moment of revelation, of challenge, of opportunity. We have to be prepared to walk through the door when it opens, or, by our own power and purpose, to open
Gluten Free & Vegan Are Not The Same: Let's Stop Conflating a Food Allergy with a Food Preference
My wife and I were honored to attend the White House Conference on Hunger, Nutrition, and Health ("White House Conference") last September and share our lived experience with Jax's diet-related disease. However, I would be remiss if I did not call out the organizers and food service providers for the White House Conference lunch who conflated a food allergy with a food preference. There is an irony to this story with the lunch provided considering the focus on hunger, nutrition, and health at th
Emotional Toll From The Loss Of Food Freedom & Exclusion From Spontaneous Activities Involving Food
Celiac - A Day in the Life Watch this video and imagine if the little girl with a Gluten allergy playing soccer was your child! When you are a parent of a child with Celiac, the journey can be incredibly challenging and emotional. It’s heartbreaking to watch your child suffer, and the constant anxiety and fear with food can be overwhelming. One of the toughest challenges that we have continually faced with Celiac is trying to make sure that our 10 year old son Jax can be safely included in life'
Readout of Meeting with Office of HHS Secretary Xavier Becerra: Labeling Gluten is Actionable Now
On April 17, 2023, the Bari family traveled to Washington, DC and shared their lived experience and research on why Gluten needs to be labeled on all packaged foods in the U.S., just like it is 85 countries worldwide. As a follow up to our meetings with the White House Domestic Policy Council staff and senior FDA leadership, we presented to staff from the Immediate Office of Health and Human Services Secretary Xavier Becerra. We were honored to have been joined again at the HHS meeting by Dr. Vi
White House Easter Egg Roll Fell Short in Accommodating Kids with Celiac and Other Food Allergies
Our family had a terrific time at the 2023 White House Easter Egg Roll! The weather was perfect! It was cool to walk by the Oval Office and hang out on the South Lawn of the White House. Thank you President Joe Biden and First Lady Dr. Jill Biden for hosting the traditional Easter Egg Roll, Easter Egg Hunt, various "EGGucation" activities and character appearances. The Washington Post reported that the White House celebrated inclusivity and accommodated children with some disabilities at the Eas
Let's Stop Gaslighting Gluten as a Second Class Food Allergen & Celiac as Not a Food Allergy!
"What’s in a name? That which we call a rose by any other name would smell just as sweet." -- William Shakespeare Shakespeare used this famous "What’s in a name" line in Romeo and Juliet to convey that the naming of things is irrelevant. However, I disagree with that assertion when it comes to the terms "food allergy" and moreover "food allergen." Is Celiac Disease a food allergy, auto-immune disease and/or digestive disease? Spoiler alert - it's all three. However, with respect to the consumer
When Jax Bari Helped to Change the White House's National Strategy Language on Disabilities
Overview This is a story about how 9 year old Jax Bari, a national advocate for Celiac Disease, informed the White House about avoiding euphemisms when referring to people with disabilities. Jax is a Celiac changemaker. Based on his lived experience with a diet-related disease that impacts 3.3 million American Celiacs, Jax asked the White House to revise its language in its National Strategy from "people who are differently-abled" to "people with disabilities." The White House listened! Next up:
POTUS M&M's Epitomize Need to Label Gluten as a Major Food Allergen to Eliminate Fear & Danger
“We are the United States of America. There is nothing beyond our capacity!” -- President Joe Biden President Joe Biden recently gave my son 9 year old son Jax a couple of boxes of his POTUS M&Ms! Jax was so excited when he showed us the M&Ms in their special box featuring the "Seal of the President of the United States" and President Biden's signature! So cool, right? For most kids, they would have ripped the box open and gobbled up the M&Ms on the spot. Well, not so fast for those kids like Ja
FDA Meeting on Health Equity: End the Gluten Guessing Game & Label Gluten as a Major Food Allergen
On December 6, 2022, the Bari family traveled to College Park, Maryland and met with senior FDA leadership to share their lived experiences and research on the unmet needs of 3.3 American Celiacs with the voluntary labeling scheme of Gluten. This was the latest presentation on Celiac Journey's "Label Gluten Now as a Major Food Allergen" campaign. Dr. Virginia Stallings Joined the Clarion Call to Label Gluten Now The Bari family was honored to have been joined at the FDA meeting by Dr. Virginia S
President Joe Biden Applauds Jax Bari's Advocacy To Help Millions with Celiac Disease
We want to thank President Biden for recognizing Jax Bari's advocacy efforts to help millions of Americans with Celiac Disease! "I admire your courage and the incredible work you've done to help the millions of Americans like you who live with Celiac disease." President Joe Biden to Jax Bari Jax was thrilled to receive the letter from the President! He loved reading it and proudly shared it with his family! Jax's first reaction to me was to ask when his meeting will be with President Biden and F
At Age 8, Jax Has Recruited 9 Members of Congress to Join the Congressional Celiac Disease Caucus
Legislative Priorities: Funding Research & Labeling Foods As World News Tonight with David Muir reported on May 19, 2021, Jax has been advocating to attain two primary goals for the 3 million American Celiacs: increasing Federal funding for Celiac Disease research, and requiring that Gluten be labeled on all packaged foods in the US, just like it is in 85 countries around the world including in Canada and across Europe. Jax Speaks & Congress Listens - Go Jax! Since the World News Tonight story a
PA Governor Tom Wolf Applauds Jax Bari's Monumental Achievements To Help Millions with Celiac
We want to thank Pennsylvania Governor Tom Wolf for his Proclamation recognizing 8 year old Jax Bari's advocacy efforts to help millions of Americans with Celiac Disease! "To: Jax Bari It is my pleasure to join with your friends and family in recognition of your monumental achievements in raising awareness for Celiac Disease. Pennsylvania is shaped and strengthened by the character and leadership of extraordinary individuals like you. Even at such a young age, you have inspired countless indiv
Dear Secretary Pete: Let's Meet to Reimagine Equitable Infrastructure
Text of Jax's Letter to Transportation Secretary Pete Buttigieg, September 16, 2021 Dear Secretary Pete, When I turned 8 in March, I wished for a cure for Celiac Disease and the 3 million Americans with Celiac. Eating without fear is our hope. Food insecurity happens everyday for Celiacs like me, especially when we travel. There is little to no safe Gluten Free food served on airplanes, at airports and at highway rest stops. That's like not having an ADA bathroom. Let's meet so I can help you r
Pennsylvania State Senate Honors Jax Bari's National Advocacy for Celiac Disease: Funding & Labeling
On September 29, 2021 in Harrisburg, Pennsylvania, the Pennsylvania State Senate honored 8 year old Jax Bari, a resident of Montgomery County, Pennsylvania, for his national advocacy efforts for Celiac Disease. "I rise today to share the story of an accomplished eight year old boy from District 17 who I am incredibly proud to represent. It is a story of advocacy, perseverance and genuine care for the community. Jax Bari is a constituent who has been a leading voice for Celiac Disease awareness a
Glutened – A Short Film About the Impact of Celiac Disease on Everyday Life
In what has been billed as “a rhythmic short film which expresses the impact everyday life has on a newly diagnosed” person with Celiac Disease, “Glutened” by Hayley Repton presents a powerful personal narrative. This cinematic masterpiece fosters empathy for members of the Celiac community by allowing others to step into their shoes, aiming to understand their needs, feelings and perspectives. While “Glutened” follows the day to day life of Repton as a young adult in the United Kingdom, she has
Labeling Gluten on All Packaged Foods Is One Step Closer to Reality with New Legislation Introduced
As World News Tonight with David Muir reported on May 19, 2021, Jax Bari (age 8) has been advocating to attain two primary goals for the 3 million American Celiacs: 1) increasing Federal funding for Celiac Disease research, and 2) requiring that Gluten be labeled on all packaged foods in the US, just like it is in 85 countries around the world including in Canada and across Europe. It Takes a Village - One Giant Step Closer to Reality On August 4, 2021, Jax's labeling goal became one step close