Celiac Journey's Advocacy: The Bari Family's Call for Change

This episode of Don’t Feed the Fear opens our month-long focus on celiac disease with a powerful conversation featuring father and son advocates Jon and Jax Bari. Together, they share their personal experiences with celiac and the urgent need for systemic change—from increased research funding to clearer gluten labeling.

We discuss how advocacy at the family level can create ripples of awareness in schools, communities, and even at the national policy level. Jon and Jax’s story highlights both the daily challenges of living with celiac and the hope that comes from pushing for a safer, more informed future.

For anyone living with or caring for someone with celiac, this episode will leave you informed and inspired to get involved.

Celiac Journey - Celiac Disease Advocacy & Education
Social Media: @celiacjourney and @glutenfinds_pa

Celiac Awareness Night at the Phillies game against the Kansas City Royals on 9/12/25:
https://mlb.tickets.com/schedule/?agency=MLB_MPV&orgid=21#/sales_group_code;salesGroupId=8314


ADINA Act – A federal bill, requiring plain language labeling, for all top food allergens and gluten containing grains in medication.

Gluten-Free Expos & Events - Wicked Gluten Free

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com

Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com

Transcript

Jon Bari: 0:00

We're striving for for two main goals. As I said, increasing government funding for celiac research and requiring the labeling of gluten on all food products.

Jax Bari: 0:09

We wanna get gluten labeled as a major food allergen in the US just like gluten is required to be labeled on all food labels in 87 other countries. We went to Europe, France, and the UK last summer, and it was so amazing because. I was just eating without fear there. I knew it was safe to eat because gluten is required to be labeled on all packaged foods.

Speaker: 0:37

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..

Amanda Whitehouse, PhD: 0:58

Welcome to Don't Feed The Fear. This September, we're going to start talking about something that I do in my work quite a bit, but I haven't talked about here on the podcast much, and that is working with individuals managing Celiac. Of course, celiac is a form of food allergy and comes with many of the same implications for mental health and wellness. Later this month on September 20th. If you're listening, when this episode is new, I'll be speaking at the Wicked Gluten-Free Expo in Fitchburg, Massachusetts, and so I'm dedicating the month of September to celebrate that and to bring some Celiac voices to the show, which I haven't touched on much yet. To start, I haven't invited on. Jon and Jax Bari. They are a father and son duo who have become strong voices for Celiac disease awareness and change. Not just for their own family, but for the millions impacted by this condition. Jax's story highlights the challenges that kids with Celiac face every day, and Jon's advocacy shows us what's possible when parents step forward to demand safer, more supportive environments together as a family. They have created Celiac Journey to fight for government funding, to find a cure and more treatment options, and to require that gluten be labeled as a top food allergen on all packaged food in the us. So I'm excited to have John and Jax here to kick off a month of exploring the social, emotional, and systemic challenges of living life with Celiac and the resilience it takes to push for change. Jon and Jax, thank you so much for being here on the Don't Feed The Fear Podcast. I can't wait for you to help me start talking about something that I've worked with for a long time, but I haven't covered in too much depth on the podcast yet, which is Celiac.

Jon Bari: 2:36

Well, thank you for having us.

Amanda Whitehouse, PhD: 2:38

Thanks for having us. Of course. I can't wait to hear all about you. Do you wanna start just by telling me. When you got your diagnosis and how you ended up getting involved in all of the advocacy that you've done since then? Sure.

Jax Bari: 2:51

So I'm Jackberry. I'm 12 years old and I'm going into seventh grade. I'm grateful for the opportunity to share my experience and my goal, eating without fear. I have Celiac disease, which is a potentially life-threatening food allergy triggered by eating gluten, which is a protein found in wheat, barley, rye, and most oats. And I was diagnosed a little bit more than six years ago, right before kindergarten when I wasn't growing. Then they did some blood tests and an endoscopy, and that revealed that I had celiac disease. So we like to say that as I learned to read, I started with fairytales and food labels.

Amanda Whitehouse, PhD: 3:38

Gotta get those down first, right? Mm-hmm.

Jon Bari: 3:41

And, and, and so it began, I mean, we had no knowledge about Clac beforehand. We didn't have any familiarity with real food allergies. We were at Children's Hospital, Philadelphia, and my wife and I were seated with. A psychologist who told us, Amanda, this is gonna be really hard for you guys. And I looked at Leslie and kind of gave her a little bit of an eye roll privately between us. And I was thinking, how hard can this really be? And, well, famous last words, Amanda. You know, this is, it's been quite a journey and. And our personalities are such that Leslie's mission initially was to get Jax on a gluten-free diet and to transition them and try and figure out how you navigate kindergarten like this.

Jax Bari: 4:23

So we started an Instagram account called Gluten-Free Finds under pa, and it started about just trying to help other new Celiacs get information about gluten-free foods. And it was really to help the community. And then we started thinking about like, what can we do to make the lives of Celiacs easier? And we thought about gluten labeling. So we've been going to meetings and since, what was it, 2019 when we kind of started. So, so,

Jon Bari: 5:00

so Leslie and him took off on gluten-free finds and it's been an amazing journey to build community and to find people who are similarly situated and trying to navigate. You know, that gluten filled world on a gluten-free diet and from sporting events to school events to camp, to religious school, you name it, it's food impacts every aspect of every day. And they've done this remarkable journey to really kind of share what their experience has been. And, and we then my, then I kicked in with. I come from a corporate strategy background, having been on the startup team of what's today, Xfinity internet and, and looking at. The why and the strategy behind this, and I couldn't figure out why aren't there any other treatments other than a gluten-free diet? Why aren't there any medicines and how long has this been going on for? And I kept getting an answer, well, we don't know. And I was like, who is the we? Like, is it the we at Children's Hospital, Philadelphia? The we at Penn Medicine, the we at, I mean, who is this? And it turns out that, you know, we identified that there's a dearth in federal funding for celiac research that for many years had averaged around$3 million per year from the NIH, which is just nothing. And then the second part was, as Jack's, you know, alluded to it, we identified that, that the voluntary labeling of gluten in the United States is just so. So much more difficult to manage Celiac with. And we looked around the world and we said, wait, why is it so much easier when we travel to Europe?

Jax Bari: 6:39

So it kind of started with a congressional briefing. It

Jon Bari: 6:42

was January of 2020.

Jax Bari: 6:44

Yeah. On one side of me was a representative, John Joyce, and on the other side of me it was Representative Dwight Evans. And they said that they agree on nothing but they agree on Celiac. It is a bipartisan issue. It affects red, white, and blue. Just unfortunately, we haven't gotten any lawmaking done yet, but we hope to get it done soon.

Amanda Whitehouse, PhD: 7:10

Yeah, and I wanna pause there because a lot of my audience manages food allergy only and or other allergic diseases only, and may not fully understand celiac. And I think you said everyone agrees once they have all the information at hand, but everyone doesn't understand that gluten doesn't just equal wheat, right?

Jax Bari: 7:29

Yes. So gluten is a protein found in wheat, barley, rye, and most oats. So it's not just the wheat, as you were saying. And unfortunately, sometimes there can be artificial or natural flavorings that can contain gluten or other things that it's just like we don't know because it's not specific enough on the food labels. So that's why we want gluten labeled in including Barley R Notes.

Amanda Whitehouse, PhD: 8:02

Right. I think that's important to distinguish.

Jon Bari: 8:04

It's this, it's this whole paradigm that it, you know, if it's gluten-free, it is wheat free. But if it's wheat free, it doesn't mean that it's gluten-free. And therein lies one of the key challenges to try and navigate this. And you almost need like a PhD in label ology, if you will, to try and get through this and decipher it. And then that's on your end. And then try and explain that to grandparents. Teachers or coaches or other parents, and, and we know and we're sensitive to it, that if someone has a nut allergy, that we're going to make sure that this is nut free, tree nut free by ingredient, but also in preparation and handling and the like.

Jax Bari: 8:45

Imagine if you have a tree nut allergy, and let's say almonds and pecans were required to be labeled. But not other tree nuts such as walnuts and cashews, that would create a massive food safety app for those with a tree nut allergy that would need to be closed. Um, but fortunately that's not the case for those with a tree nut allergy. And we really, we really hope that gluten can have the same safety net as tree nuts does.

Jon Bari: 9:20

It's really just, it's common sense and, and you know, I guess this really hit home for us when we traveled and, and, and we were coming home after a great vacation in Italy and which it's remarkable how on the back of every menu they list the top 14 major or priority allergens and that you can look through it and you can cross reference. And when they tell you that they prevent cross contact. They really mean what they say. And this is not a, these are not fancy restaurants, they're just your neighborhood restaurants that you probably, or at least we wouldn't necessarily trust in the United States where them, where they just say, oh yeah, we got this. But they really do. And it's just, it's, it's cultural for them. And I think it flows from the regulatory side, but then it becomes part of, you know, the Italian food culture there. So we had this amazing trip there and we're on the plane home and. They're serving ice cream. And Leslie and I look at each other and, and we look at Jax and we're bracing for that moment of disappointment. And like, and so Jack said, well, can I eat this? And, and you know, Leslie takes a look at it and Jax takes a look at it and it's not Mark gluten-free. And then I was like, wait a sec, where's this made? And it was made in the United Kingdom. And I was like, we know that in the uk, gluten is required to be labeled. That's wheat, barley, rye, and oats in the uk and there's no wheat, barley, rye, or oats on this. And I said, look, we have an eight hour flight ahead of us. I certainly don't want you to get sick, but I also want you to realize this is everything we fight for here and that it's so simple and straightforward. And he ate it. He enjoyed it. He was fine. And it reinforced for us that this is all doable here in the United States too.

Amanda Whitehouse, PhD: 11:20

So tell us where things are at now. Have there been any bills introduced?

Jon Bari: 11:25

So Jax filed a citizen petition with the FDA back in September of 2023, and it's petitioning the secretary of HHS to. Issue rulemaking to require the labeling of all gluten grains in the United States, and that's based on food Allergen Labeling and Consumer Protection Act, FPA for short from 2 0 0 4, where Congress at the time in a very bipartisan way had given the secretary of HHS the authority to label new food allergens that are not existing major food allergens. Gluten was originally required to be labeled in FPA when it was first introduced, and through some backroom negotiations from certain lobbying groups, we believe they said that gluten is an intolerance, meaning a digestive response and not an allergy, meaning it's not an immunological response. It's wrong, wrong, wrong. Because yes, there are people who are intolerant to gluten, but for Celiacs, it's an immunological response. It's a non IG mediated food allergy response. But the good news is that the secretary of HHS has authority to add new allergens. The problem is how many times have they done this jax?

Jax Bari: 12:49

They've used it once for Carmine and coil, which are two. Food dies. So as my dad was saying, unfortunately they haven't used it to label gluten, but

Jon Bari: 13:07

they have the power to do it

Jax Bari: 13:09

under 4 0 3 W and 4 0 3 x of fpa, the acting secretary of HHS does have the statutory authority and they've used it once hopefully. The second time will be for gluten. Right?

Amanda Whitehouse, PhD: 13:28

That's who you've been interacting with for, for multiple administrations now. Right. So first of all, how do you just get invited to go talk to hhs? Like because of the petition that he filed, or you have some connections. John, what's going on with that? So,

Jon Bari: 13:42

well, you know, it, it's really who navigates a lot of this. Um, uh, Jax got to know Gisele Fetterman. Um, who is the wife of Senator John Fetterman and he was the former Lieutenant Governor of Pennsylvania. Um, Jax was honored in front of the Pennsylvania State Senate back in 2021 after he appeared on World News Tonight with David Muir. And kind of fast forward on that, we got to know Giselle while. Well, Senator Fedderman was on the campaign trail and like I said, she's a nutritionist and, and she took to Jackson's story.

Jax Bari: 14:19

Ms. Fedderman is actually the one who introduced me to President Biden. We were at an event where he spoke and then there were a lot of people just going out for pictures and he obviously thought that I just wanted a picture as well. But then I started talking to him and I was. Telling him that gluten-free food is to celiacs as insulin is to diabetics. And I explained to him how hard it was to live with celiac disease when gluten isn't required to be labeled.

Jon Bari: 14:54

We left this night and I, I was like, do you have any idea what you just did?

Jax Bari: 15:01

And he then invited me to the White House to meet with the domestic policy council.

Jon Bari: 15:08

That was a kind of funny question at the time.

Jax Bari: 15:10

He asked me for my phone number and I was like, I don't have a phone, but I can give you my dad.

Jon Bari: 15:17

And so like Jax is off with him and I'm kind of standing back watching this. I couldn't fully hear what was going on. Yeah, it was, it was pretty incredible that he talked food policy with the president.

Amanda Whitehouse, PhD: 15:28

It's amazing.

Jon Bari: 15:30

And um, so we did some work with the Biden administration. He made his case to the domestic policy councils. He said, and, and then Secretary Becerra invited him to come to the HHS Food as Medicine Summit.

Jax Bari: 15:46

So there were around 400 people there. I was the only kid in the room. I was invited because I had been meeting with the FDA, which is. A part of the HHS and then there was a panel where they were allowing questions from the audience, and I stood up and asked a question about what FDA Commissioner Ca was there, and HHS Assistant Secretary Levine was up there along with other top leaders from the NIH, the CDC and other parts of HHS. And. I asked what Commissioner K thought about labeling gluten as a major food allergen in the US and then unfortunately he just gave me this like nonsense answer, like, gluten issues are arising and we will consider this in our future meetings. He was like, there are people on all sides of this issue, and I'm like. You are the only person on the other side of the, of l labeling, like I haven't met a single other person who doesn't like it

Jon Bari: 17:03

and Well, good

Jax Bari: 17:04

for you.

Jon Bari: 17:05

It really just, it, it put an exclamation point on this apathy by the FDA because we've identified three underlying biases, one of which is that a gluten-free diet is all that's needed. When a gluten-free diet is all that's ever been available. And the second one is that the voluntary labeling of gluten is all that's needed when that's all that's ever been available. And the third one is something that's really just so important because the FDA had othered our consumer protection needs by minimizing the adverse health effects. Saying that, yes, it's potentially life threatening. You may get cancer, you may get diabetes, you may get other autoimmune diseases, but you're not gonna go into anaphylactic shock. And you know, that's just such a disconnect to us and to me. I always push back and I say, look, when I was growing up, when I was playing soccer. You know, if you got hit in the head, unless you were unconscious or bleeding profusely, you got right back in the game. Today we know to take all, treat all head trauma seriously, regardless of whether you're knocked unconscious. So the idea that for a non ig e mediated food allergy to be a function of whether it causes anaphylaxis or not, is completely the wrong framework. And this is coming from the FDA. And so we're trying to change that, but it was really frustrating.

Jax Bari: 18:44

So there was one final speaker before lunch and we were like, well, what's safe to eat here? It was Buffet style, so I couldn't have anything that wasn't packaged or wrapped, but. Before you even get to Buffet style, there was literally zero food allergen labeling. Nothing about gluten-free or even the top nine allergens, like it's literally the Food is Medicine Summit. All I could have was a bag of chips

Jon Bari: 19:20

and Well, they had apples for you. Yeah. So everyone else gets have Turkey sandwiches and the like, but this is just like, we were also part of the White House Conference on Hunger, nutrition and Health. And I remember in solidarity with Jax, I had ordered a gluten-free meal and I'm served vegan food and there's nothing wrong with being a vegan, but they're not the same thing. And it's just, it's one of those real disconnects there. So many people came up to Jax during the day and this was what, 2024? So you are, you're just almost 11 at the time. Mm-hmm. And I don't think he had a full understanding of the magnitude of this day. And so many people were like, you don't know how important. What you just did was because you put him on record. And he gave a nonsense answer that just was a bunch of equivocation

Jax Bari: 20:14

secretary. Alex Azar has celiac disease like me, and unfortunately we didn't find out about that until later in his four years when the, when COVID was happening. So it was very chaotic for him. But he said in his four years, no one had came to him about celiac disease or food allergies in general. So that just showed the lack of advocacy that was happening at the time. And he, he said that he absolutely would've labeled gluten under Falk. But if, if, uh, someone had come to him during his four years, he told me to never give up. And he said, just like Dr. Grammar, that. The reason people go to work every day is because of people like me who are advocating and pushing for a cause.

Amanda Whitehouse, PhD: 21:21

Yeah. That must have stung though, for the person who actually had the authority to do it. Mm-hmm. Yeah.

Jon Bari: 21:26

I mean, correct. It's um, it was

Amanda Whitehouse, PhD: 21:29

busy. It was a busy time. It was, it was, it was a crazy

Jon Bari: 21:32

chaotic time. And, you know, the unfortunate part is that over the course of many years, you know. History hasn't been kind to the celiac disease from research to funding to food allergen labeling, and it's just been considered trivial. And look, I think that if you roll the clock back to late 1990s and early two thousands, people trivialize peanut allergies, they ate trivialize the other food allergies, and we've come such a far way. But it reminds us how far we have yet to. Yet to travel on this journey and for us, again, building community with having like from that very first time we were on Capitol Hill in January of 2020, we had kids on the hill. We had kids telling their stories as part of the celiac journey Army. It was fantastic because you have in John Joyce, a physician and a staunch Trumper and a representative Dwight Evans. You have a staunch Democrat and from different parts of Pennsylvania, but agreeing on the common. Issues that we need to take Celiac disease more seriously. And to us, that was so heartening to be able to have that. And we learn from that each and every day. And like Jax was saying, this is this red, white, blue, everything in between Celiac knows no party. And, and you know, we just kind of navigate the waters that we're in. We don't advocate for a party, we just advocate for celiac disease.

Amanda Whitehouse, PhD: 23:04

Right. Everybody can get behind keeping kids healthy. It's just, it's unfathomable that some people are dismissive, like, that's okay. It's not anaphylaxis, so that's okay. Like that's just, it's. Gut wrenching. Literally, literally

Jon Bari: 23:17

and figuratively. And it's, um, it's a hard journey. But you know, it's what's been fantastic for us is the community, and not just within the celiac community, but across the food allergy community. Because the commonality here is how do you prevent the immunological response? It's through allergen avoidance. And how do you have allergen avoidance? It's through reading labels. So.

Jax Bari: 23:43

In March of 2024, uh, fair, which I'm sure you know all about food allergen research and education, they held a summit called Courage at Congress and there were about 300 or 400 people there. And one of the main focuses was the Idina Act from Idina Tole and. She had gotten sick at her camp from taking a medicine that her parents believe should be gluten-free based on the ingredients. But unfortunately, gluten is not required to be labeled on medicine.

Jon Bari: 24:25

No allergens required to be labeled on medicine,

Jax Bari: 24:27

not even the top nine food allergens. So that's why Edina created the Edina Act. Which is to require the labeling of the top nine major food allergens and gluten on all medicine over the counter and prescription in the United States. And that would just create a safer space for so many people, whether it's celiac disease or other top nine food allergies. And if you ask someone. Like, who works at these companies? And ask them why don't they, there's no reasoning behind it. It's just because they don't have to,

Jon Bari: 25:13

companies do what they're required to do and they'll take the path, at least resistance and least liability. And, and it's, and it's, it's shocking there. And, and we've had it where, you know, Jax is 103 fever and we're in CVS looking for. Motrin or Tylenol that's labeled gluten-free and not knowing what he can take and what he can't take. And it's just, it's frightening. It's just, it's a, it's a sad state that, that, you know, to the microgram, these companies know what's in every one of their products. Just tell us what's in the product. And so it was amazing meeting Adina and her family.

Jax Bari: 25:54

I got to meet so many amazing kids. I made so many friends over those two or three days, and we, whether it was a gluten allergy, a peanut allergy, an egg allergy, a dairy allergy, we were all there because of one thing, and that was food allergies. Everyone there was like united in a. Community.

Jon Bari: 26:21

And one of the things that, you know, that we're really proud of that got us going a lot on some of our advocacy was the faster act. And, and you know, here it was the Sesame community, you know, first asked the secretary of HHS to use their existing statutory authority to require the labeling of sesame. And when HHS and FDA failed to do that, they went the congressional route to force their hand. And, you know, we were brothers in arms with'em because while we don't have a dog, you know, in that fight we do believe that, you know, we can help them and that this is part of an overall community. So, you know, to that end, we've been thrilled that with the re the response. And the support of Jackson's FDA Citizen Petition That Fair has backed this Consumer Reports, the Consumer Federation of America, the University of Pennsylvania Law School, children's Hospital of Philadelphia, children's National Hospital in DC and I can go on and on. And it's a who's who of people from the food allergy space, traditional food allergies, if you will. From the Celiac space, national Celiac Association Beyond Celiac, um, and then moms, fathers, you name it, grandparents, teachers, psychologists. And there are just so many amazing perspectives in here because they understand the challenges both directly or indirectly through a family member or friend. And here's one of the interesting tidbits. I don't know if you know Dr. Virginia Stallings at all. Um, but she's one of the world's foremost experts on food allergens. It turns out she's actually based at Children's Hospital Philadelphia and in charge of, uh, she's the director of nutrition, and we got to know her because the FDA in 2021 had issued a document called Evaluating the Public Health Importance of Food Allergens other than the major food allergens. In that document, the FDA cited work by Dr. Stallings from the National Academies of Sciences, that basically they used her research to justify that they will only evaluate those food allergens. It can cause anaphylaxis. And I said, you know, and I was scratching my head and I was in my office, I think it was on a Sunday afternoon, and I'm trying to go through these documents and make heads or tails of it. This report is 500 plus pages that Dr. Stallings chaired and edited. And I was like, wait a sec, wait a sec. And I, I called her and I think she thought I must have been nuts, right? So when I get to work on Monday or Tuesday, and she's like, John, let me stop you right there. I think. Gluten should be required to be labeled. I think that gluten is just as serious as IG mediated food allergies are with the majors. But the FDA funded my research back in 2016 and the FDA and my statement of task told me not to include celiac and not to include gluten, and I'm like, wow. Here's the twist to this. In 85, the FDA issued a final rule. In it, it said all gluten grains should be required to be declared on food labels in 1985. Where are we today? 40 years after that fact. I feel that as a community, if we work more together and lessen silos, that we can really be that more like Horton hears a who, where it's that combination of voices that we amplify each other. And that's why we supported the Fast Act. That's why we support the Adina Act and we support other common sense solutions because we know our community will be better and safer for them.

Amanda Whitehouse, PhD: 30:17

Yeah. So tell everybody listening how they can do that link.

Jon Bari: 30:20

So, Jax has two accounts on, on, on social media, on Instagram. Um, the first is gluten-free finds, and that's at gluten free Finds pa. And the second is at Celiac journey. Um, our website, celiac journey.com includes lots of information on our different initiatives in terms of research we're doing with Penn Medicine in terms of trying to find a izing therapy. For celiac disease. Um, and we're doing that with Nobel Laureate Dr. Drew Weissman. Um, so it's this fantastic thing where Jax had to leave school early one day and miss a science class, but he got to introduce, you know, the Nobel Laureate studying celiac disease for Jax and 729,000 kids like Jax. Um, but on the citizen petition side, they can go to select journey.com and they can find information. We want people in just the overall food allergy community to say, this is common sense and this is for our brothers in arms here. And so that, that, that's what we're hoping for. And one of the things we'll be doing in the not too distant future is Jackson's gonna host an advocacy night just for children and their, and their parents. To explain how to get to a congresswoman, how to get to a congresswoman, how to get to a senator and do that on a state or local level. Moms, you know, get a lot of attention when they speak up. Uh, dads are just below that, but kids, when they elevate their voices and share the pediatric perspective and say, I need help, please help me. It's an amazing call to action there.

Amanda Whitehouse, PhD: 32:03

Right. You're right. And I'm glad you said you're including parents because a lot of us don't know, you know, I'm just learning and seeing behind the scenes. So the advocacy night, is it going to be a virtual event? Yes. I hope Uhhuh.

Jon Bari: 32:13

Yep. Absolutely. And we also have a community night at Citizens Bank Park when the Phillies take on the Kansas City Royals. And we'll be doing that, um, on Friday, September 12th, and we'll be celebrating Celiac awareness night. Um, which is one day before International Celiac Awareness Day. Um, so we'll be doing a whole bunch of different things and if they follow us on, on Instagram, they'll be able to keep up on all those issues there. But it's also important to know that, that not only do we work on the federal side,

Jax Bari: 32:46

so we have an amazing state, uh, senator named Amanda Capi. She is. So kind to us, and she's helped us so much. She is also the lead sponsor of Senate Bill 6 29, and that would be to require the labeling of pollutant on all packaged foods in the state of Pennsylvania. So far, we have 12 co-sponsors, I believe.

Jon Bari: 33:20

And we're working to build that because mm-hmm. In the absence of the federal government doing it, Pennsylvania's gonna take the lead here to protect Celia Acts.

Jax Bari: 33:28

And then having one or more states having this with a patchwork system really pressures the FDA, um, a lot more to require the labeling of gluten on a national level instead of on the state level.

Amanda Whitehouse, PhD: 33:48

That's great. We're gonna put so many links in the notes for the show. So many people wanna help, but it's so hard to know what to do. So yes, if we know who to reach out to, it's just good to give people really specific action steps. I think

Jon Bari: 34:01

what's so important here is that, you know, it's kind of the coalition of the willing here that, to share that perspective because while there have been different times in our journey here. I think that one of the most moving ones was when Jax got gluten in 2023, and that was the worst. Gluten.

Jax Bari: 34:22

I was pretty much living on the bathroom floor for two days. I was vomiting, having diarrhea, and it was really just like this out of body experience and. So that's just the short term damage. Then there's the long term damage where gluten damages my small intestine. And in the small intestine there are these finger-like projections called vii, and the VII absorb your nutrients. So I was diagnosed when I wasn't growing. And the reason I wasn't growing was because my VII just weren't absorbing any nutrients. They were completely blunted

Jon Bari: 35:08

and for us, when we saw him on the floor for those two and a half days, you know, there was nothing we could do and there's no medicine to take. And the only thing we could have done is to take him to a hospital, to get an IV to be hydrated. And it's a horrible, horrible experience where you're powerless to help your child. Um, so I think that reinforced to us, you know, why we do what we do. But as we finish this, you know, I think of your goal eating without fear. And, and, and I hate to end on the note about, about getting so sick, but your spirit in life, which is what mom and I mm-hmm. You know, are so proud of.

Jax Bari: 35:55

You know, I don't wanna stop living life. I live life to the fullest. Um, I love playing sports. I play soccer, tennis, and squash. Um, I love skiing in the winter, swimming in the summer, going to overnight camp. You really can't let food allergy stop you.

Amanda Whitehouse, PhD: 36:18

All of us parents want every child to have that freedom and that safety that you're describing. It's so important.

Jon Bari: 36:24

Oh, thank you. Thank you. It's this indomitable spirit that, that, you know, neither Leslie nor I had to worry about this when we were children and, and to me, I think one of the greatest challenges is that loss of the carefree childhood. But that to balance it out with someone who will travel, who's not scared and you know, will face it head on to us, is just, it's an amazing way to navigate and, and we're super proud of you buddy.

Amanda Whitehouse, PhD: 36:55

Yeah, and I'm super grateful. Thank you so much, Jax. Every time I meet another young person like you, there's amazing adults out there. Like you said, John. People listen to some extent to moms and dads who share their stories, but I have met so many amazing kids who are learning how the system works. They're learning how to speak up and make change, and we're gonna get as far as we can get you. But once you are all in charge. I can't even wait to see what's gonna happen. We can just, yeah.

Jon Bari: 37:19

Mom and I second that.

Amanda Whitehouse, PhD: 37:21

Mm-hmm. What's your final thought? That you wanna leave them with?

Jon Bari: 37:24

Anyone who wants to contact us, and they can do it through Celiac journey or through Instagram, send us a direct message and become part of the Celiac journey Army. And we need children, we need their parents, we need them in different states. And we know that one person. Can spark change in others. We're honored that for the Celiac community that Jackson can help carry that torch.

Amanda Whitehouse, PhD: 37:49

Well, thank you for doing it Jax. Thank you so much for having us. I appreciate it so much. Thanks, Jon. We're really grateful.

Jon Bari: 37:57

It was wonderful talking to you.

Amanda Whitehouse, PhD: 37:59

I'm so grateful to Jon and Jax for joining me today and sharing both the personal and the systemic sides of Celiac disease and their advocacy in this area. Their voices remind us that awareness is just the beginning and action is what makes lasting change. So here are three steps you can take after listening to follow up on our conversation today. Number one. You can follow them@celiacjourney.com, and that's where you can find the details about all the initiatives and efforts that they talked about today on the show. You can follow them on social media at Celiac Journey, and. Then you can take step number two, which is to support the efforts that they're working on. And number three, just stay tuned. The rest of the month I'm gonna be talking about this topic. So if you or someone that you know and love manages Celiac, and you wanna hear more conversation about it, I will be doing that with you all month if you happen to be in the area or up for travel on September 20th. Like I said, I will be in Fitchburg, Massachusetts at the Wicked Gluten-free Expo talking about the social and emotional impact of Celiac, and I would love for you to join me there. Thanks for listening, and if you're finding the show helpful, I would appreciate it so much. If you would give me a rating, leave a review, or share it with somebody else who might appreciate it.

39:09

the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.