On 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, convened an NIH-wide workshop focused on the impact of diet on mucosal immunity and immune-mediated digestive diseases. There were about 125 people who attended in person and few hundred more joined online. Jax issued a challenge to the doctors and scientists to help him change the trajectory of the lives of 3.3 million American Celiacs.
Celiac is a Disease, Not a Diet!
Jax shared that he has a potentially life-threatening food allergy, auto-immune disease and digestive disease triggered by eating Gluten, a protein found in Wheat, Barley, Rye and most Oats. Jax then shared his lived experience with what it's like to have Celiac Disease, how the the only treatment is a strict Gluten Free diet for life, how Celiacs face food insecurity every day regardless of a person's age or social status, and how he gets violently sick if he accidentally consumes even just a crumb of Gluten.
Unlike "traditional" (IgE-Mediated) food allergies, there is no rescue medicine available in the event of accidental ingestion of Gluten for a Non-IgE-Mediated food allergy like Celiac or EOE (eosinophilic esophagitis). Even just a crumb of Gluten is like kryptonite to Jax and can make him violently sick for days.
Since 2004 in the US, Wheat has been required to be labeled, but Barley, Rye and Oats have not, and that has created a massive consumer safety gap. To that end, Jax also discussed his FDA Citizen Petition to require the labeling of Gluten on all packaged foods in the U.S., just like Gluten must be declared on all food labels in 87 other countries. Jax's Citizen Petition has received support from many including Pennsylvania Governor Josh Shapiro, Consumer Reports, Consumer Federation of America, FARE (Food Allergy Research & Education), Children's Hospital of Philadelphia, Harvard Medical School, National Celiac Association, Beyond Celiac, Red Sneakers for Oakley, Elijah-Alavi Foundation, etc.
Jax also talked about his efforts to fund mRNA Celiac research with Nobel Laureate Dr. Drew Weissman at the Institute of RNA Innovation at Penn Medicine, and he told everyone to stay tuned for an exciting research announcement. Jax emphasized that until there's a treatment for Celiac Disease other than a strict Gluten Free diet, our research and our family's lived experience have informed us that requiring the labeling of Gluten will have the greatest impact on improving the quality of life and consumer protection for American Celiacs and their loved ones.
"I'm wearing Travis Kelce’s jersey today because he's my favorite NFL player. To me, his number 87 represents the 87 other countries around the world which require the labeling of Gluten on all packaged foods! With the FDA's help, the United States can too!" --Jax Bari
Following the Keynote Address by Dr. David Artis from Weill Cornell Medicine, Jax spoke on a panel discussing "Gut Mucosa and Immune System Development" moderated by NIAID's Ryan Ranallo and Mercy Prabhudas and which included:
Jax Bari, Celiac Journey & @GlutenFreeFinds_pa
Dr. Marcela Pasetti, University of Maryland School of Medicine
Dr. Nicholas Arpaia, Columbia University
Dr. Tim Hand, University of Pittsburgh
Dr. Melody Zeng, Weill Cornell Medicine
"Jax reminds us why we come to work each day." -- Dr. Drew Bremer, Director, NIH Office of Nutrition Research
Historical Analysis - How Did We Get Here?
Jax's presentation included a discussion about the history of Celiac Disease and researchers' failures to date to find any treatments other than a Gluten Free diet.
Each day that passes causes Celiacs great risk of ingesting Gluten and getting very sick. This can stop Celiacs from living their best lives possible! So how did we get here? Let us take a moment to step back in time.
The year was 1887:
Grover Cleveland was President
Gustave Eiffel began work on the Eiffel Tower in Paris
Americans celebrated the 100th Anniversary of the Constitution
The NIH was established, and
Dr. Samuel Gee theorized about Celiac - "if the patient can be cured at all, it must be by means of diet."
That was 137 years ago!!!
Fast forward to 1952:
Harry Truman was President
Dr. Jonas Salk was poised to develop the Polio vaccine
It was first discovered that Gluten was the trigger of Celiac Disease.
That was 72 years ago!!!
Fast forward to 2024, and the only known treatment option for Celiac Disease is a medically required, strict Gluten Free diet, with no exceptions! That's simply not enough!
Food Insecurity Happens Every Day for Celiacs
"Food insecurity for Celiacs happens every day, regardless of a person’s age or social status." --Jax Bari
Jax's presentation also included a discussion about how Celiacs face food insecurity every day, regardless of a person’s age or social status, because of various reasons:
There's a constant threat of cross-contact with Gluten,
80% of foods have Gluten in them,
the limited availability of Gluten Free food, especially when eating out of home,
the high price of Gluten Free food, and
Gluten is not required to be labeled on packaged foods in the U.S.! Yet!"
Overview & Goals of the NIH-Wide Workshop
To enhance our understanding of diet-host-microbiome interrelationships and their impact on mucosal immunity and health outcomes, the Office of Nutrition Research (ONR) and NIAID, in collaboration with many other Institutes and Offices at NIH, have organized a workshop focused on understanding the critical dietary factors that regulate the development and function of the gastrointestinal immune system.
This workshop will investigate the impact of early exposures – including diet (human milk, infant formula, and beyond) and nutritional status – on mucosal homeostasis and gut mucosal immune development and the functional interactions of these biological systems with the gut microbiome, and their relationship to the development of digestive and immune-mediated diseases, such as inflammatory bowel disease and food allergies.
The goals of the presentations and discussion sessions will be to understand the current state of the science in the field, identify knowledge gaps, and to discuss steps needed to move forward to address these gaps related to the role of nutrition in maintaining or altering intestinal homeostasis during health and disease states across the lifespan.
With Gratitude
After Dr. Bremer heard Jax speak at the HHS Food is Medicine Summit, Jax was invited to speak at the NIH, and we are grateful for this opportunity.
Resources
Jax Bari's Presentation - "Sharing My Lived Experience - Reduce Diet-Related Disease By Requiring the Labeling of Gluten," 8/21/24.
Agenda - Impact of Diet on Mucosal Immunity and Immune-Mediated Digestive Diseases Workshop, 8/21/24 - 8/22/24.
Executive Summary - Impact of Diet on Mucosal Immunity and Immune-Mediated Digestive Diseases Workshop, 8/21/24-8/22/24.
Event Details - Impact of Diet on Mucosal Immunity and Immune-Mediated Digestive Diseases Workshop, 8/21/24-8/22/24.
Speaker Bios - Learn more about Jax Bari and the other speakers at the NIH's Impact of Diet on Mucosal Immunity and Immune-Mediated Digestive Diseases Workshop, 8/21/24-8/22/24.
Transcript of Jax Bari's Presentation, 8/21/24
Hi. I’m Jax Bari. I’m 11 years old, I live in Philadelphia and I’m about to start the 6th grade.
Thank you Dr. Bremer and Dr. Artis. I’m grateful for the opportunity to share my lived experience today!
I have Celiac Disease which is a potentially life-threatening food allergy, auto-immune disease and digestive disease.
Just before I started Kindergarten, I was diagnosed with Celiac when I was not growing.
As I learned to read, I started with fairy tales and food labels!
Celiac impacts more than 3.3 million Americans, greater than 1.0% of the general 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!
Gluten ingestion for Celiacs can cause more than 200 debilitating symptoms including anemia, cancer, diarrhea & vomiting, heart disease, immunological scarring, intestinal damage, and malnutrition.
44% of those who follow a strict Gluten Free diet still get glutened once a month!
Unlike “traditional” IgE-Mediated food allergies, there’s no rescue medication for Celiacs in the event of accidental ingestion of Gluten, and one cannot outgrow Celiac.
If I eat just a crumb of Gluten, just a crumb, I can get very sick!
That’s what it looks like when I get Glutened. This time I was vomiting and I had diarrhea for 2 days. I was living on the bathroom floor. I felt sick for days afterwards. It was awful!
Gluten also damages the small intestine.
When I was 5 years old, I had Marsh 3 level damage to my small intestine from Gluten.
I was also anemic.
I was told that the doctors only see Marsh 4 level damage when they do an autopsy. It was really bad!
Food insecurity for Celiacs happens every day, regardless of a person’s age or social status, because of various reasons:
1. There’s a constant threat of cross-contact with Gluten,
2. 80% of foods have Gluten in them,
3. the limited availability of Gluten Free food, especially when eating out of home,
4. the high price of Gluten Free food, and
5. Gluten is not required to be labeled on packaged foods in the U.S.! Yet!
Eating without fear is our goal!
So, my family founded Celiac Journey, an all-volunteer patient-centric advocacy organization, with an emphasis on telling the pediatric perspective of millions American Celiacs, their parents and caretakers.
I have two goals:
Require the labeling Gluten on all packaged foods in the US, just like Gluten must be declared on all food labels in 87 other countries, and
Increase government funding for Celiac research to find treatments other than a strict Gluten Free diet.
Celiac is a chronic disability because it impacts major life activities on a daily basis like eating, learning, working, sleeping, socializing, travelling, etc.
When I talked food policy with President Biden, I told him that Insulin is to Diabetics as Gluten Free food is to Celiacs
Celiacs belong to an underserved community of people with disabilities who have systematically been denied a full opportunity to participate in aspects of Economic, Social and Civic Life.
As to one example, I was invited to the HHS Food is Medicine Summit where I spoke truth to power. At lunch, there was no food allergen labeling on any of the food served and there was no Gluten Free food. The only things I could eat were an apple a bag of chips. Fortunately, my amazing mom brought lunch for me, even though I had requested a Gluten Free meal when I registered. If the HHS Food is Medicine Summit cannot safely feed those with Celiac, who can?
There is no break from Celiac ever!
Celiac is Every Bite, Every Day! Constant worrying, constant questioning, constant uncertainty, constant high cost!
Celiac is a Disease, NOT a Diet!
Since 2006, Wheat has been required to be labeled in the US, but Barley, Rye and Oats have not!
According to The New York Times, “because use of the gluten-free claim is voluntary, many foods that are in fact gluten-free might not be labeled as such.”
Voluntary labeling makes Celiacs limited to a premium marketplace of food items in which the price of gluten-free foods is 2x–6x more on a per ounce basis than their gluten-containing counterparts.
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 & 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 for millions of American Celiacs like me!
That’s why I filed a Citizen Petition with the FDA to require the labeling of Gluten on all packaged foods in the US.
Under the Food Allergen Labeling and Consumer Protection Act of 2004, HHS Secretary Becerra has existing statutory in sections 403(W) and 403(X) to require the labeling of Gluten. In the past 20 years, the HHS Secretary has only exercised this authority once with requiring the labeling of carmine and cochineal.
I’m wearing Travis Kelce’s jersey because he’s my favorite player. To me, his number 87 represents the 87 other countries around the world which require the labeling of Gluten on all packaged foods! With the FDA’s help, the United States can too!
I just got back from London and Paris. It was so much easier reading food labels in Europe than it is in the U.S.
Even though I don’t speak French, I knew what was safe to eat in France because Gluten is required to be labeled and Europe takes Celiac Disease and Gluten accommodations so much more seriously on packaged foods and prepared meals.
I recently met with FDA Deputy Commissioner Jim Jones.
I pleaded with DC Jones to follow the expert recommendations of the 2021 Food and Agriculture Organization of the United Nations and the World Health Organization’s Expert Consultation on the Risk Assessment of Food Allergens. This food allergen labeling expert committee was chaired by the FDA’s Dr. Lauren Jackson and included the FDA’s Dr. Stefano Luccioli.
I was grateful to be joined at my meeting by Brian Ronholm who is the Director of Food Policy at Consumer Reports. Mr. Ronholm has called on the FDA to require the labeling of Gluten on behalf of Consumer Reports’ millions of subscribers.
I am also grateful to work with Dr. Virginia Stallings from Children’s Hospital of Philadelphia. She is one of the world’s foremost experts on nutrition and food allergens.
I quote Dr. Stallings: "A gluten free diet is not all that is needed to treat Celiac Disease; rather a gluten free diet is all that has ever been historically available to treat Celiac Disease. Additionally, with respect to labeling food products in the United States, the voluntary gluten free labeling scheme does not sufficiently protect consumers who are on medically required and very restrictive gluten free diets."
Dr. Stallings helped us create the following “What is Food Allergy?” graphic to understand the Similarities and Differences Between Non-IgE-Mediated Mechanisms with Celiac Disease & Typical IgE-Mediated Mechanisms.
This is a matter of health equity!
I’m not asking for special treatment. I’m just asking for equal treatment including for requiring the labeling Gluten and adequately funding Celiac research.
Each day that passes causes Celiacs great risk of ingesting Gluten and getting very sick. This can stop Celiacs from living their best lives possible!
Each day that passes causes Celiacs great risk of ingesting Gluten and getting very sick. This can stop Celiacs from living their best lives possible! So how did we get here? Let me take a moment to step back in time. The year was 1887.
Grover Cleveland was President
Gustave Eiffel began work on the Eiffel Tower in Paris
Americans celebrated the 100th Anniversary of the Constitution
The NIH was established, and
Dr. Samuel Gee theorized about Celiac - "if the patient can be cured at all, it must be by means of diet."
That was 137 years ago!!!
Fast forward to 1952:
Harry Truman was President
Dr. Jonas Salk was poised to develop the Polio vaccine
It was first discovered that Gluten was the trigger of Celiac Disease.
That was 72 years ago!!!
Fast forward to 2024, and the only known treatment option for Celiac Disease is a medically required, strict Gluten Free diet, with no exceptions! That's simply not enough!
Unfortunately, research shows that the NIH Has Historically Underfunded Celiac Disease Research Out of various GI Disorders, from 2011-2015:
Celiac disease consistently received the lowest amount of NIH funding at about $3 million per year.
Celiac disease consistently received the lowest amount of NIH grants, at approximately 8 grants per year.
In conclusion, NIH funding of GI diseases is not proportional to disease prevalence or mortality. Celiac is underfunded in comparison with other diseases, especially when the prevalence, treatment burden, and lack of available treatment options are considered.
For far too long, Celiac has not received it’s fair share of funding since many believe that a Gluten Free diet is all that’s been needed to treat Celiac.
I’m here to tell you that is a myth!
While funding amounts for Celiac research have slightly improved over the last several years, it is still not nearly enough, especially to make up for the biomedical research vacuum that inadequate funding has created
Biomedical breakthroughs are only enabled through research, and this requires a transformative commitment with adequate Federal funding!
This is the NIH, there is nothing beyond your capacity!
I’m grateful to Pennsylvania Governor Josh Shapiro and Pennsylvania State Senator Amanda Cappelletti for their support of labeling Gluten and funding research.
I’m so excited that we recently raised $375,000 from Pennsylvania to start working with Nobel Prize Winner Dr. Drew Weissman at Penn Medicine.
The Weissman Lab’s research will be focused on developing an mRNA-LNP therapy to promote Gluten tolerance for Celiacs.
One of the silver linings of Celiac has been meeting so many great people and building a community to help advocate on issues with common sense solutions.
I want to give a shout out to my friend Adina Togal who is 13 years old, has Celiac, a dairy allergy and EoE. Adina is the inspiration behind the ADINA Act which will require the labeling of Gluten and the top 9 Major Food Allergens in all medicines.
I also want to give a shout out to FARE - Food Allergy Research and Education. Both Adina and FARE have supported Celiac Journey’s efforts to require the labeling of Gluten in food.
I’m proud to also help support Adina and FARE to try to get the ADINA Act passed.
If COVID has taught us anything, it’s that we can solve large problems if we work together!
I agree with Dr. Bremer that, "Food weaves a thread through the fabric of human culture, history, family, and memory. Nutrition connects food to health; it touches every cell and every system in our bodies at every age and stage."
Nutrition is vitally important, but for those of us with Celiac and other food allergies, there is a threshold question as to whether food is safe to eat even before worrying about nutrition.
I hope you’ll join me on my Celiac Journey and focus more NIH resources on Celiac research to find treatment options other than a Gluten Free diet, a rescue medicine and ideally a cure to this dreaded disease!
Let’s do this!"
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