September 2, 2025 • 39 mins
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
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jon Bari (00:00):
We're striving for for two main goals.
(00:02):
As I said, increasing governmentfunding for celiac research and
requiring the labeling of glutenon all food products.
Jax Bari (00:09):
We wanna get gluten labeled as a major food allergen
in the US just like gluten isrequired to be labeled on all
food labels in 87 othercountries.
We went to Europe, France, andthe UK last summer, and it was
so amazing because.
I was just eating without fearthere.
(00:30):
I knew it was safe to eatbecause gluten is required to be
labeled on all packaged foods.
Speaker (00:37):
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence..
Amanda Whitehouse, PhD (00:58):
Welcome to Don't Feed The Fear.
This September, we're going tostart talking about something
that I do in my work quite abit, but I haven't talked about
here on the podcast much, andthat is working with individuals
managing Celiac.
Of course, celiac is a form offood allergy and comes with many
of the same implications formental health and wellness.
Later this month on September20th.
(01:19):
If you're listening, when thisepisode is new, I'll be speaking
at the Wicked Gluten-Free Expoin Fitchburg, Massachusetts, and
so I'm dedicating the month ofSeptember to celebrate that and
to bring some Celiac voices tothe 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 duowho have become strong voices
(01:41):
for Celiac disease awareness andchange.
Not just for their own family,but for the millions impacted by
this condition.
Jax's story highlights thechallenges that kids with Celiac
face every day, and Jon'sadvocacy shows us what's
possible when parents stepforward to demand safer, more
supportive environments togetheras a family.
They have created Celiac Journeyto fight for government funding,
(02:03):
to find a cure and moretreatment options, and to
require that gluten be labeledas a top food allergen on all
packaged food in the us.
So I'm excited to have John andJax here to kick off a month of
exploring the social, emotional,and systemic challenges of
living life with Celiac and theresilience it takes to push for
change.
(02:23):
Jon and Jax, thank you so muchfor being here on the Don't Feed
The Fear Podcast.
I can't wait for you to help mestart talking about something
that I've worked with for a longtime, but I haven't covered in
too much depth on the podcastyet, which is Celiac.
Jon Bari (02:36):
Well, thank you for having us.
Amanda Whitehouse, PhD (02:38):
Thanks for having us.
Of course.
I can't wait to hear all aboutyou.
Do you wanna start just bytelling me.
When you got your diagnosis andhow you ended up getting
involved in all of the advocacythat you've done since then?
Sure.
Jax Bari (02:51):
So I'm Jackberry.
I'm 12 years old and I'm goinginto seventh grade.
I'm grateful for the opportunityto share my experience and my
goal, eating without fear.
I have Celiac disease, which isa potentially life-threatening
food allergy triggered by eatinggluten, which is a protein found
in wheat, barley, rye, and mostoats.
(03:15):
And I was diagnosed a little bitmore than six years ago, right
before kindergarten when Iwasn't growing.
Then they did some blood testsand an endoscopy, and that
revealed that I had celiacdisease.
So we like to say that as Ilearned to read, I started with
fairytales and food labels.
Amanda Whitehouse, PhD (03:38):
Gotta get those down first, right?
Mm-hmm.
Jon Bari (03:41):
And, and, and so it began, I mean, we had no
knowledge about Clac beforehand.
We didn't have any familiaritywith 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 kindof gave her a little bit of an
(04:03):
eye roll privately between us.
And I was thinking, how hard canthis really be?
And, well, famous last words,Amanda.
You know, this is, it's beenquite a journey and.
And our personalities are suchthat Leslie's mission initially
was to get Jax on a gluten-freediet and to transition them and
try and figure out how younavigate kindergarten like this.
Jax Bari (04:23):
So we started an Instagram account called
Gluten-Free Finds under pa, andit started about just trying to
help other new Celiacs getinformation about gluten-free
foods.
And it was really to help thecommunity.
And then we started thinkingabout like, what can we do to
(04:46):
make the lives of Celiacseasier?
And we thought about glutenlabeling.
So we've been going to meetingsand since, what was it, 2019
when we kind of started.
So, so,
Jon Bari (05:00):
so Leslie and him took off on gluten-free finds and
it's been an amazing journey tobuild community and to find
people who are similarlysituated and trying to navigate.
You know, that gluten filledworld on a gluten-free diet and
from sporting events to schoolevents to camp, to religious
school, you name it, it's foodimpacts every aspect of every
(05:22):
day.
And they've done this remarkablejourney to really kind of share
what their experience has been.
And, and we then my, then Ikicked in with.
I come from a corporate strategybackground, having been on the
startup team of what's today,Xfinity internet and, and
looking at.
(05:43):
The why and the strategy behindthis, and I couldn't figure out
why aren't there any othertreatments other than a
gluten-free diet?
Why aren't there any medicinesand 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'sHospital, Philadelphia?
The we at Penn Medicine, the weat, I mean, who is this?
(06:07):
And it turns out that, you know,we identified that there's a
dearth in federal funding forceliac research that for many
years had averaged around$3million per year from the NIH,
which is just nothing.
And then the second part was, asJack's, you know, alluded to it,
we identified that, that thevoluntary labeling of gluten in
(06:28):
the United States is just so.
So much more difficult to manageCeliac with.
And we looked around the worldand we said, wait, why is it so
much easier when we travel toEurope?
Jax Bari (06:39):
So it kind of started with a congressional briefing.
It
Jon Bari (06:42):
was January of 2020.
Jax Bari (06:44):
Yeah.
On one side of me was arepresentative, John Joyce, and
on the other side of me it wasRepresentative Dwight Evans.
And they said that they agree onnothing but they agree on
Celiac.
It is a bipartisan issue.
It affects red, white, and blue.
Just unfortunately, we haven'tgotten any lawmaking done yet,
(07:08):
but we hope to get it done soon.
Amanda Whitehouse, PhD (07:10):
Yeah, and I wanna pause there because
a lot of my audience managesfood allergy only and or other
allergic diseases only, and maynot fully understand celiac.
And I think you said everyoneagrees once they have all the
information at hand, buteveryone doesn't understand that
gluten doesn't just equal wheat,right?
Jax Bari (07:29):
Yes.
So gluten is a protein found inwheat, barley, rye, and most
oats.
So it's not just the wheat, asyou were saying.
And unfortunately, sometimesthere can be artificial or
natural flavorings that cancontain gluten or other things
that it's just like we don'tknow because it's not specific
(07:53):
enough on the food labels.
So that's why we want glutenlabeled in including Barley R
Notes.
Amanda Whitehouse, PhD (08:02):
Right.
I think that's important todistinguish.
Jon Bari (08:04):
It's this, it's this whole paradigm that it, you
know, if it's gluten-free, it iswheat free.
But if it's wheat free, itdoesn't mean that it's
gluten-free.
And therein lies one of the keychallenges to try and navigate
this.
And you almost need like a PhDin label ology, if you will, to
try and get through this anddecipher it.
(08:25):
And then that's on your end.
And then try and explain that tograndparents.
Teachers or coaches or otherparents, and, and we know and
we're sensitive to it, that ifsomeone has a nut allergy, that
we're going to make sure thatthis is nut free, tree nut free
by ingredient, but also inpreparation and handling and the
like.
Jax Bari (08:45):
Imagine if you have a tree nut allergy, and let's say
almonds and pecans were requiredto be labeled.
But not other tree nuts such aswalnuts and cashews, that would
create a massive food safety appfor those with a tree nut
allergy that would need to beclosed.
Um, but fortunately that's notthe case for those with a tree
(09:07):
nut allergy.
And we really, we really hopethat gluten can have the same
safety net as tree nuts does.
Jon Bari (09:20):
It's really just, it's common sense and, and you know,
I guess this really hit home forus when we traveled and, and,
and we were coming home after agreat vacation in Italy and
which it's remarkable how on theback of every menu they list the
top 14 major or priorityallergens and that you can look
(09:44):
through it and you can crossreference.
And when they tell you that theyprevent cross contact.
They really mean what they say.
And this is not a, these are notfancy restaurants, they're just
your neighborhood restaurantsthat you probably, or at least
we wouldn't necessarily trust inthe United States where them,
where they just say, oh yeah, wegot this.
But they really do.
(10:05):
And it's just, it's, it'scultural for them.
And I think it flows from theregulatory side, but then it
becomes part of, you know, theItalian food culture there.
So we had this amazing tripthere and we're on the plane
home and.
They're serving ice cream.
And Leslie and I look at eachother and, and we look at Jax
(10:26):
and we're bracing for thatmoment of disappointment.
And like, and so Jack said,well, can I eat this?
And, and you know, Leslie takesa look at it and Jax takes a
look at it and it's not Markgluten-free.
And then I was like, wait a sec,where's this made?
And it was made in the UnitedKingdom.
(10:48):
And I was like, we know that inthe uk, gluten is required to be
labeled.
That's wheat, barley, rye, andoats in the uk and there's no
wheat, barley, rye, or oats onthis.
And I said, look, we have aneight hour flight ahead of us.
I certainly don't want you toget sick, but I also want you to
realize this is everything wefight for here and that it's so
(11:09):
simple and straightforward.
And he ate it.
He enjoyed it.
He was fine.
And it reinforced for us thatthis 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 billsintroduced?
Jon Bari (11:25):
So Jax filed a citizen petition with the FDA back in
September of 2023, and it'spetitioning the secretary of HHS
to.
Issue rulemaking to require thelabeling of all gluten grains in
the United States, and that'sbased on food Allergen Labeling
(11:47):
and Consumer Protection Act, FPAfor short from 2 0 0 4, where
Congress at the time in a verybipartisan way had given the
secretary of HHS the authorityto label new food allergens that
are not existing major foodallergens.
Gluten was originally requiredto be labeled in FPA when it was
(12:09):
first introduced, and throughsome backroom negotiations from
certain lobbying groups, webelieve they said that gluten is
an intolerance, meaning adigestive response and not an
allergy, meaning it's not animmunological response.
It's wrong, wrong, wrong.
(12:31):
Because yes, there are peoplewho are intolerant to gluten,
but for Celiacs, it's animmunological response.
It's a non IG mediated foodallergy response.
But the good news is that thesecretary of HHS has authority
to add new allergens.
The problem is how many timeshave 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 statutoryauthority and they've used it
once hopefully.
The second time will be forgluten.
Right?
Amanda Whitehouse, PhD (13:28):
That's who you've been interacting with
for, for multipleadministrations now.
Right.
So first of all, how do you justget invited to go talk to hhs?
Like because of the petitionthat 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 GiseleFetterman.
Um, who is the wife of SenatorJohn Fetterman and he was the
former Lieutenant Governor ofPennsylvania.
Um, Jax was honored in front ofthe Pennsylvania State Senate
(14:02):
back in 2021 after he appearedon World News Tonight with David
Muir.
And kind of fast forward onthat, we got to know Giselle
while.
Well, Senator Fedderman was onthe 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 onewho introduced me to President
Biden.
We were at an event where hespoke and then there were a lot
of people just going out forpictures and he obviously
thought that I just wanted apicture as well.
But then I started talking tohim and I was.
(14:40):
Telling him that gluten-freefood is to celiacs as insulin is
to diabetics.
And I explained to him how hardit was to live with celiac
disease when gluten isn'trequired 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 cangive 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 wasgoing on.
Yeah, it was, it was prettyincredible 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 domesticpolicy councils.
He said, and, and then SecretaryBecerra 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 beenmeeting with the FDA, which is.
A part of the HHS and then therewas a panel where they were
allowing questions from theaudience, and I stood up and
(16:08):
asked a question about what FDACommissioner Ca was there, and
HHS Assistant Secretary Levinewas up there along with other
top leaders from the NIH, theCDC and other parts of HHS.
And.
I asked what Commissioner Kthought about labeling gluten as
(16:32):
a major food allergen in the USand then unfortunately he just
gave me this like nonsenseanswer, like, gluten issues are
arising and we will considerthis in our future meetings.
He was like, there are people onall sides of this issue, and I'm
(16:52):
like.
You are the only person on theother side of the, of l
labeling, like I haven't met asingle 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'veidentified three underlying
biases, one of which is that agluten-free diet is all that's
needed.
When a gluten-free diet is allthat's ever been available.
(17:25):
And the second one is that thevoluntary labeling of gluten is
all that's needed when that'sall that's ever been available.
And the third one is somethingthat's really just so important
because the FDA had othered ourconsumer protection needs by
(17:46):
minimizing the adverse healtheffects.
Saying that, yes, it'spotentially life threatening.
You may get cancer, you may getdiabetes, you may get other
autoimmune diseases, but you'renot gonna go into anaphylactic
shock.
And you know, that's just such adisconnect to us and to me.
(18:09):
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 thehead, unless you were
unconscious or bleedingprofusely, you got right back in
the game.
Today we know to take all, treatall head trauma seriously,
regardless of whether you'reknocked unconscious.
So the idea that for a non ig emediated food allergy to be a
(18:33):
function of whether it causesanaphylaxis or not, is
completely the wrong framework.
And this is coming from the FDA.
And so we're trying to changethat, 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 eathere?
It was Buffet style, so Icouldn't have anything that
wasn't packaged or wrapped, but.
Before you even get to Buffetstyle, there was literally zero
(19:06):
food allergen labeling.
Nothing about gluten-free oreven the top nine allergens,
like it's literally the Food isMedicine Summit.
All I could have was a bag ofchips
Jon Bari (19:20):
and Well, they had apples for you.
Yeah.
So everyone else gets haveTurkey sandwiches and the like,
but this is just like, we werealso part of the White House
Conference on Hunger, nutritionand Health.
And I remember in solidaritywith Jax, I had ordered a
gluten-free meal and I'm servedvegan food and there's nothing
(19:41):
wrong with being a vegan, butthey're not the same thing.
And it's just, it's one of thosereal disconnects there.
So many people came up to Jaxduring the day and this was
what, 2024?
So you are, you're just almost11 at the time.
Mm-hmm.
And I don't think he had a fullunderstanding of the magnitude
(20:01):
of this day.
And so many people were like,you don't know how important.
What you just did was becauseyou put him on record.
And he gave a nonsense answerthat just was a bunch of
equivocation
Jax Bari (20:14):
secretary.
Alex Azar has celiac diseaselike me, and unfortunately we
didn't find out about that untillater in his four years when
the, when COVID was happening.
So it was very chaotic for him.
(20:34):
But he said in his four years,no one had came to him about
celiac disease or food allergiesin general.
So that just showed the lack ofadvocacy that was happening at
the time.
And he, he said that heabsolutely would've labeled
(20:57):
gluten under Falk.
But if, if, uh, someone had cometo 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 workevery day is because of people
like me who are advocating andpushing for a cause.
Amanda Whitehouse, PhD (21:21):
Yeah.
That must have stung though, forthe 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 unfortunatepart is that over the course of
many years, you know.
History hasn't been kind to theceliac disease from research to
funding to food allergenlabeling, and it's just been
considered trivial.
And look, I think that if youroll the clock back to late
(21:52):
1990s and early two thousands,people trivialize peanut
allergies, they ate trivializethe other food allergies, and
we've come such a far way.
But it reminds us how far wehave yet to.
Yet to travel on this journeyand for us, again, building
community with having like fromthat very first time we were on
(22:13):
Capitol Hill in January of 2020,we had kids on the hill.
We had kids telling theirstories as part of the celiac
journey Army.
It was fantastic because youhave in John Joyce, a physician
and a staunch Trumper and arepresentative Dwight Evans.
You have a staunch Democrat andfrom different parts of
(22:34):
Pennsylvania, but agreeing onthe common.
Issues that we need to takeCeliac disease more seriously.
And to us, that was soheartening to be able to have
that.
And we learn from that each andevery day.
And like Jax was saying, this isthis red, white, blue,
everything in between Celiacknows no party.
(22:55):
And, and you know, we just kindof 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 keepingkids healthy.
It's just, it's unfathomablethat some people are dismissive,
like, that's okay.
It's not anaphylaxis, so that'sokay.
Like that's just, it's.
Gut wrenching.
Literally, literally
Jon Bari (23:17):
and figuratively.
And it's, um, it's a hardjourney.
But you know, it's what's beenfantastic for us is the
community, and not just withinthe celiac community, but across
the food allergy community.
Because the commonality here ishow do you prevent the
immunological response?
It's through allergen avoidance.
(23:38):
And how do you have allergenavoidance?
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 researchand education, they held a
summit called Courage atCongress and there were about
300 or 400 people there.
And one of the main focuses wasthe Idina Act from Idina Tole
(24:09):
and.
She had gotten sick at her campfrom taking a medicine that her
parents believe should begluten-free based on the
ingredients.
But unfortunately, gluten is notrequired 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 theEdina Act.
Which is to require the labelingof the top nine major food
allergens and gluten on allmedicine over the counter and
prescription in the UnitedStates.
And that would just create asafer space for so many people,
(24:51):
whether it's celiac disease orother top nine food allergies.
And if you ask someone.
Like, who works at thesecompanies?
And ask them why don't they,there's no reasoning behind it.
It's just because they don'thave to,
Jon Bari (25:13):
companies do what they're required to do and
they'll take the path, at leastresistance and least liability.
And, and it's, and it's, it'sshocking there.
And, and we've had it where, youknow, Jax is 103 fever and we're
in CVS looking for.
Motrin or Tylenol that's labeledgluten-free and not knowing what
(25:35):
he can take and what he can'ttake.
And it's just, it's frightening.
It's just, it's a, it's a sadstate that, that, you know, to
the microgram, these companiesknow what's in every one of
their products.
Just tell us what's in theproduct.
And so it was amazing meetingAdina and her family.
Jax Bari (25:54):
I got to meet so many amazing kids.
I made so many friends overthose two or three days, and we,
whether it was a gluten allergy,a peanut allergy, an egg
allergy, a dairy allergy, wewere all there because of one
thing, and that was foodallergies.
(26:16):
Everyone there was like unitedin a.
Community.
Jon Bari (26:21):
And one of the things that, you know, that we're
really proud of that got usgoing a lot on some of our
advocacy was the faster act.
And, and you know, here it wasthe Sesame community, you know,
first asked the secretary of HHSto use their existing statutory
authority to require thelabeling of sesame.
(26:41):
And when HHS and FDA failed todo that, they went the
congressional route to forcetheir hand.
And, you know, we were brothersin arms with'em because while we
don't have a dog, you know, inthat fight we do believe that,
you know, we can help them andthat this is part of an overall
community.
So, you know, to that end, we'vebeen thrilled that with the re
(27:05):
the response.
And the support of Jackson's FDACitizen Petition That Fair has
backed this Consumer Reports,the Consumer Federation of
America, the University ofPennsylvania Law School,
children's Hospital ofPhiladelphia, children's
National Hospital in DC and Ican go on and on.
And it's a who's who of peoplefrom the food allergy space,
(27:29):
traditional food allergies, ifyou will.
From the Celiac space, nationalCeliac Association Beyond
Celiac, um, and then moms,fathers, you name it,
grandparents, teachers,psychologists.
And there are just so manyamazing perspectives in here
because they understand thechallenges both directly or
(27:52):
indirectly through a familymember or friend.
And here's one of theinteresting tidbits.
I don't know if you know Dr.
Virginia Stallings at all.
Um, but she's one of the world'sforemost experts on food
allergens.
It turns out she's actuallybased at Children's Hospital
Philadelphia and in charge of,uh, she's the director of
nutrition, and we got to knowher because the FDA in 2021 had
(28:16):
issued a document calledEvaluating the Public Health
Importance of Food Allergensother than the major food
allergens.
In that document, the FDA citedwork by Dr.
Stallings from the NationalAcademies of Sciences, that
basically they used her researchto justify that they will only
evaluate those food allergens.
(28:37):
It can cause anaphylaxis.
And I said, you know, and I wasscratching my head and I was in
my office, I think it was on aSunday afternoon, and I'm trying
to go through these documentsand make heads or tails of it.
This report is 500 plus pagesthat Dr.
Stallings chaired and edited.
And I was like, wait a sec, waita sec.
And I, I called her and I thinkshe thought I must have been
(29:00):
nuts, right?
So when I get to work on Mondayor Tuesday, and she's like,
John, let me stop you rightthere.
I think.
Gluten should be required to belabeled.
I think that gluten is just asserious as IG mediated food
allergies are with the majors.
But the FDA funded my researchback in 2016 and the FDA and my
(29:24):
statement of task told me not toinclude celiac and not to
include gluten, and I'm like,wow.
Here's the twist to this.
In 85, the FDA issued a finalrule.
In it, it said all gluten grainsshould be required to be
declared on food labels in 1985.
(29:47):
Where are we today?
40 years after that fact.
I feel that as a community, ifwe work more together and lessen
silos, that we can really bethat more like Horton hears a
who, where it's that combinationof voices that we amplify each
other.
And that's why we supported theFast Act.
(30:07):
That's why we support the AdinaAct and we support other common
sense solutions because we knowour community will be better and
safer for them.
Amanda Whitehouse, PhD (30:17):
Yeah.
So tell everybody listening howthey 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-freefinds, and that's at gluten free
Finds pa.
And the second is at Celiacjourney.
Um, our website, celiacjourney.com includes lots of
(30:40):
information on our differentinitiatives in terms of research
we're doing with Penn Medicinein terms of trying to find a
izing therapy.
For celiac disease.
Um, and we're doing that withNobel Laureate Dr.
Drew Weissman.
Um, so it's this fantastic thingwhere Jax had to leave school
early one day and miss a scienceclass, but he got to introduce,
(31:02):
you know, the Nobel Laureatestudying celiac disease for Jax
and 729,000 kids like Jax.
Um, but on the citizen petitionside, they can go to select
journey.com and they can findinformation.
We want people in just theoverall food allergy community
to say, this is common sense andthis is for our brothers in arms
(31:25):
here.
And so that, that, that's whatwe're hoping for.
And one of the things we'll bedoing in the not too distant
future is Jackson's gonna hostan advocacy night just for
children and their, and theirparents.
To explain how to get to acongresswoman, how to get to a
congresswoman, how to get to asenator and do that on a state
or local level.
(31:46):
Moms, you know, get a lot ofattention when they speak up.
Uh, dads are just below that,but kids, when they elevate
their voices and share thepediatric perspective and say, I
need help, please help me.
It's an amazing call to actionthere.
Amanda Whitehouse, PhD (32:03):
Right.
You're right.
And I'm glad you said you'reincluding parents because a lot
of us don't know, you know, I'mjust learning and seeing behind
the scenes.
So the advocacy night, is itgoing to be a virtual event?
Yes.
I hope Uhhuh.
Jon Bari (32:13):
Yep.
Absolutely.
And we also have a communitynight at Citizens Bank Park when
the Phillies take on the KansasCity Royals.
And we'll be doing that, um, onFriday, September 12th, and
we'll be celebrating Celiacawareness night.
Um, which is one day beforeInternational Celiac Awareness
Day.
(32:34):
Um, so we'll be doing a wholebunch 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 knowthat, 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 helpedus so much.
She is also the lead sponsor ofSenate Bill 6 29, and that would
(33:06):
be to require the labeling ofpollutant 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 federalgovernment doing it,
Pennsylvania's gonna take thelead here to protect Celia Acts.
Jax Bari (33:28):
And then having one or more states having this with a
patchwork system reallypressures the FDA, um, a lot
more to require the labeling ofgluten 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 inthe notes for the show.
So many people wanna help, butit's so hard to know what to do.
So yes, if we know who to reachout to, it's just good to give
people really specific actionsteps.
I think
Jon Bari (34:01):
what's so important here is that, you know, it's
kind of the coalition of thewilling here that, to share that
perspective because while therehave been different times in our
journey here.
I think that one of the mostmoving ones was when Jax got
gluten in 2023, and that was theworst.
(34:22):
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 termdamage.
Then there's the long termdamage where gluten damages my
(34:43):
small intestine.
And in the small intestine thereare these finger-like
projections called vii, and theVII absorb your nutrients.
So I was diagnosed when I wasn'tgrowing.
And the reason I wasn't growingwas because my VII just weren't
(35:04):
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 havedone is to take him to a
hospital, to get an IV to behydrated.
And it's a horrible, horribleexperience where you're
(35:29):
powerless to help your child.
Um, so I think that reinforcedto 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 onthe note about, about getting so
sick, but your spirit in life,which is what mom and I mm-hmm.
(35:52):
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, andsquash.
Um, I love skiing in the winter,swimming in the summer, going to
overnight camp.
You really can't let foodallergy stop you.
Amanda Whitehouse, PhD (36:18):
All of us parents want every child to
have that freedom and thatsafety that you're describing.
It's so important.
Jon Bari (36:24):
Oh, thank you.
Thank you.
It's this indomitable spiritthat, that, you know, neither
Leslie nor I had to worry aboutthis when we were children and,
and to me, I think one of thegreatest challenges is that loss
of the carefree childhood.
But that to balance it out withsomeone who will travel, who's
(36:45):
not scared and you know, willface it head on to us, is just,
it's an amazing way to navigateand, 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 youngperson like you, there's amazing
adults out there.
Like you said, John.
People listen to some extent tomoms and dads who share their
stories, but I have met so manyamazing kids who are learning
how the system works.
They're learning how to speak upand make change, and we're gonna
get as far as we can get you.
But once you are all in charge.
(37:17):
I can't even wait to see what'sgonna 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 orthrough Instagram, send us a
direct message and become partof the Celiac journey Army.
And we need children, we needtheir parents, we need them in
different states.
And we know that one person.
Can spark change in others.
(37:44):
We're honored that for theCeliac 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 sharingboth the personal and the
systemic sides of Celiac diseaseand their advocacy in this area.
Their voices remind us thatawareness is just the beginning
and action is what makes lastingchange.
So here are three steps you cantake after listening to follow
up on our conversation today.
Number one.
You can followthem@celiacjourney.com, and
(38:21):
that's where you can find thedetails about all the
initiatives and efforts thatthey talked about today on the
show.
You can follow them on socialmedia at Celiac Journey, and.
Then you can take step numbertwo, which is to support the
efforts that they're working on.
And number three, just staytuned.
The rest of the month I'm gonnabe talking about this topic.
So if you or someone that youknow and love manages Celiac,
(38:42):
and you wanna hear moreconversation about it, I will be
doing that with you all month ifyou happen to be in the area or
up for travel on September 20th.
Like I said, I will be inFitchburg, Massachusetts at the
Wicked Gluten-free Expo talkingabout the social and emotional
impact of Celiac, and I wouldlove for you to join me there.
Thanks for listening, and ifyou're finding the show helpful,
(39:03):
I would appreciate it so much.
If you would give me a rating,leave a review, or share it with
somebody else who mightappreciate it.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
If you have any questions aboutyour own medical experience or
mental health needs, pleaseconsult a professional.
(39:24):
I'm Dr.
Amanda Whitehouse.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
We're striving for for two main goals.
(00:02):
As I said, increasing governmentfunding for celiac research and
requiring the labeling of glutenon all food products.
Jax Bari (00:09):
We wanna get gluten labeled as a major food allergen
in the US just like gluten isrequired to be labeled on all
food labels in 87 othercountries.
We went to Europe, France, andthe UK last summer, and it was
so amazing because.
I was just eating without fearthere.
(00:30):
I knew it was safe to eatbecause gluten is required to be
labeled on all packaged foods.
Speaker (00:37):
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence..
Amanda Whitehouse, PhD (00:58):
Welcome to Don't Feed The Fear.
This September, we're going tostart talking about something
that I do in my work quite abit, but I haven't talked about
here on the podcast much, andthat is working with individuals
managing Celiac.
Of course, celiac is a form offood allergy and comes with many
of the same implications formental health and wellness.
Later this month on September20th.
(01:19):
If you're listening, when thisepisode is new, I'll be speaking
at the Wicked Gluten-Free Expoin Fitchburg, Massachusetts, and
so I'm dedicating the month ofSeptember to celebrate that and
to bring some Celiac voices tothe 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 duowho have become strong voices
(01:41):
for Celiac disease awareness andchange.
Not just for their own family,but for the millions impacted by
this condition.
Jax's story highlights thechallenges that kids with Celiac
face every day, and Jon'sadvocacy shows us what's
possible when parents stepforward to demand safer, more
supportive environments togetheras a family.
They have created Celiac Journeyto fight for government funding,
(02:03):
to find a cure and moretreatment options, and to
require that gluten be labeledas a top food allergen on all
packaged food in the us.
So I'm excited to have John andJax here to kick off a month of
exploring the social, emotional,and systemic challenges of
living life with Celiac and theresilience it takes to push for
change.
(02:23):
Jon and Jax, thank you so muchfor being here on the Don't Feed
The Fear Podcast.
I can't wait for you to help mestart talking about something
that I've worked with for a longtime, but I haven't covered in
too much depth on the podcastyet, which is Celiac.
Jon Bari (02:36):
Well, thank you for having us.
Amanda Whitehouse, PhD (02:38):
Thanks for having us.
Of course.
I can't wait to hear all aboutyou.
Do you wanna start just bytelling me.
When you got your diagnosis andhow you ended up getting
involved in all of the advocacythat you've done since then?
Sure.
Jax Bari (02:51):
So I'm Jackberry.
I'm 12 years old and I'm goinginto seventh grade.
I'm grateful for the opportunityto share my experience and my
goal, eating without fear.
I have Celiac disease, which isa potentially life-threatening
food allergy triggered by eatinggluten, which is a protein found
in wheat, barley, rye, and mostoats.
(03:15):
And I was diagnosed a little bitmore than six years ago, right
before kindergarten when Iwasn't growing.
Then they did some blood testsand an endoscopy, and that
revealed that I had celiacdisease.
So we like to say that as Ilearned to read, I started with
fairytales and food labels.
Amanda Whitehouse, PhD (03:38):
Gotta get those down first, right?
Mm-hmm.
Jon Bari (03:41):
And, and, and so it began, I mean, we had no
knowledge about Clac beforehand.
We didn't have any familiaritywith 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 kindof gave her a little bit of an
(04:03):
eye roll privately between us.
And I was thinking, how hard canthis really be?
And, well, famous last words,Amanda.
You know, this is, it's beenquite a journey and.
And our personalities are suchthat Leslie's mission initially
was to get Jax on a gluten-freediet and to transition them and
try and figure out how younavigate kindergarten like this.
Jax Bari (04:23):
So we started an Instagram account called
Gluten-Free Finds under pa, andit started about just trying to
help other new Celiacs getinformation about gluten-free
foods.
And it was really to help thecommunity.
And then we started thinkingabout like, what can we do to
(04:46):
make the lives of Celiacseasier?
And we thought about glutenlabeling.
So we've been going to meetingsand since, what was it, 2019
when we kind of started.
So, so,
Jon Bari (05:00):
so Leslie and him took off on gluten-free finds and
it's been an amazing journey tobuild community and to find
people who are similarlysituated and trying to navigate.
You know, that gluten filledworld on a gluten-free diet and
from sporting events to schoolevents to camp, to religious
school, you name it, it's foodimpacts every aspect of every
(05:22):
day.
And they've done this remarkablejourney to really kind of share
what their experience has been.
And, and we then my, then Ikicked in with.
I come from a corporate strategybackground, having been on the
startup team of what's today,Xfinity internet and, and
looking at.
(05:43):
The why and the strategy behindthis, and I couldn't figure out
why aren't there any othertreatments other than a
gluten-free diet?
Why aren't there any medicinesand 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'sHospital, Philadelphia?
The we at Penn Medicine, the weat, I mean, who is this?
(06:07):
And it turns out that, you know,we identified that there's a
dearth in federal funding forceliac research that for many
years had averaged around$3million per year from the NIH,
which is just nothing.
And then the second part was, asJack's, you know, alluded to it,
we identified that, that thevoluntary labeling of gluten in
(06:28):
the United States is just so.
So much more difficult to manageCeliac with.
And we looked around the worldand we said, wait, why is it so
much easier when we travel toEurope?
Jax Bari (06:39):
So it kind of started with a congressional briefing.
It
Jon Bari (06:42):
was January of 2020.
Jax Bari (06:44):
Yeah.
On one side of me was arepresentative, John Joyce, and
on the other side of me it wasRepresentative Dwight Evans.
And they said that they agree onnothing but they agree on
Celiac.
It is a bipartisan issue.
It affects red, white, and blue.
Just unfortunately, we haven'tgotten any lawmaking done yet,
(07:08):
but we hope to get it done soon.
Amanda Whitehouse, PhD (07:10):
Yeah, and I wanna pause there because
a lot of my audience managesfood allergy only and or other
allergic diseases only, and maynot fully understand celiac.
And I think you said everyoneagrees once they have all the
information at hand, buteveryone doesn't understand that
gluten doesn't just equal wheat,right?
Jax Bari (07:29):
Yes.
So gluten is a protein found inwheat, barley, rye, and most
oats.
So it's not just the wheat, asyou were saying.
And unfortunately, sometimesthere can be artificial or
natural flavorings that cancontain gluten or other things
that it's just like we don'tknow because it's not specific
(07:53):
enough on the food labels.
So that's why we want glutenlabeled in including Barley R
Notes.
Amanda Whitehouse, PhD (08:02):
Right.
I think that's important todistinguish.
Jon Bari (08:04):
It's this, it's this whole paradigm that it, you
know, if it's gluten-free, it iswheat free.
But if it's wheat free, itdoesn't mean that it's
gluten-free.
And therein lies one of the keychallenges to try and navigate
this.
And you almost need like a PhDin label ology, if you will, to
try and get through this anddecipher it.
(08:25):
And then that's on your end.
And then try and explain that tograndparents.
Teachers or coaches or otherparents, and, and we know and
we're sensitive to it, that ifsomeone has a nut allergy, that
we're going to make sure thatthis is nut free, tree nut free
by ingredient, but also inpreparation and handling and the
like.
Jax Bari (08:45):
Imagine if you have a tree nut allergy, and let's say
almonds and pecans were requiredto be labeled.
But not other tree nuts such aswalnuts and cashews, that would
create a massive food safety appfor those with a tree nut
allergy that would need to beclosed.
Um, but fortunately that's notthe case for those with a tree
(09:07):
nut allergy.
And we really, we really hopethat gluten can have the same
safety net as tree nuts does.
Jon Bari (09:20):
It's really just, it's common sense and, and you know,
I guess this really hit home forus when we traveled and, and,
and we were coming home after agreat vacation in Italy and
which it's remarkable how on theback of every menu they list the
top 14 major or priorityallergens and that you can look
(09:44):
through it and you can crossreference.
And when they tell you that theyprevent cross contact.
They really mean what they say.
And this is not a, these are notfancy restaurants, they're just
your neighborhood restaurantsthat you probably, or at least
we wouldn't necessarily trust inthe United States where them,
where they just say, oh yeah, wegot this.
But they really do.
(10:05):
And it's just, it's, it'scultural for them.
And I think it flows from theregulatory side, but then it
becomes part of, you know, theItalian food culture there.
So we had this amazing tripthere and we're on the plane
home and.
They're serving ice cream.
And Leslie and I look at eachother and, and we look at Jax
(10:26):
and we're bracing for thatmoment of disappointment.
And like, and so Jack said,well, can I eat this?
And, and you know, Leslie takesa look at it and Jax takes a
look at it and it's not Markgluten-free.
And then I was like, wait a sec,where's this made?
And it was made in the UnitedKingdom.
(10:48):
And I was like, we know that inthe uk, gluten is required to be
labeled.
That's wheat, barley, rye, andoats in the uk and there's no
wheat, barley, rye, or oats onthis.
And I said, look, we have aneight hour flight ahead of us.
I certainly don't want you toget sick, but I also want you to
realize this is everything wefight for here and that it's so
(11:09):
simple and straightforward.
And he ate it.
He enjoyed it.
He was fine.
And it reinforced for us thatthis 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 billsintroduced?
Jon Bari (11:25):
So Jax filed a citizen petition with the FDA back in
September of 2023, and it'spetitioning the secretary of HHS
to.
Issue rulemaking to require thelabeling of all gluten grains in
the United States, and that'sbased on food Allergen Labeling
(11:47):
and Consumer Protection Act, FPAfor short from 2 0 0 4, where
Congress at the time in a verybipartisan way had given the
secretary of HHS the authorityto label new food allergens that
are not existing major foodallergens.
Gluten was originally requiredto be labeled in FPA when it was
(12:09):
first introduced, and throughsome backroom negotiations from
certain lobbying groups, webelieve they said that gluten is
an intolerance, meaning adigestive response and not an
allergy, meaning it's not animmunological response.
It's wrong, wrong, wrong.
(12:31):
Because yes, there are peoplewho are intolerant to gluten,
but for Celiacs, it's animmunological response.
It's a non IG mediated foodallergy response.
But the good news is that thesecretary of HHS has authority
to add new allergens.
The problem is how many timeshave 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 statutoryauthority and they've used it
once hopefully.
The second time will be forgluten.
Right?
Amanda Whitehouse, PhD (13:28):
That's who you've been interacting with
for, for multipleadministrations now.
Right.
So first of all, how do you justget invited to go talk to hhs?
Like because of the petitionthat 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 GiseleFetterman.
Um, who is the wife of SenatorJohn Fetterman and he was the
former Lieutenant Governor ofPennsylvania.
Um, Jax was honored in front ofthe Pennsylvania State Senate
(14:02):
back in 2021 after he appearedon World News Tonight with David
Muir.
And kind of fast forward onthat, we got to know Giselle
while.
Well, Senator Fedderman was onthe 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 onewho introduced me to President
Biden.
We were at an event where hespoke and then there were a lot
of people just going out forpictures and he obviously
thought that I just wanted apicture as well.
But then I started talking tohim and I was.
(14:40):
Telling him that gluten-freefood is to celiacs as insulin is
to diabetics.
And I explained to him how hardit was to live with celiac
disease when gluten isn'trequired 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 cangive 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 wasgoing on.
Yeah, it was, it was prettyincredible 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 domesticpolicy councils.
He said, and, and then SecretaryBecerra 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 beenmeeting with the FDA, which is.
A part of the HHS and then therewas a panel where they were
allowing questions from theaudience, and I stood up and
(16:08):
asked a question about what FDACommissioner Ca was there, and
HHS Assistant Secretary Levinewas up there along with other
top leaders from the NIH, theCDC and other parts of HHS.
And.
I asked what Commissioner Kthought about labeling gluten as
(16:32):
a major food allergen in the USand then unfortunately he just
gave me this like nonsenseanswer, like, gluten issues are
arising and we will considerthis in our future meetings.
He was like, there are people onall sides of this issue, and I'm
(16:52):
like.
You are the only person on theother side of the, of l
labeling, like I haven't met asingle 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'veidentified three underlying
biases, one of which is that agluten-free diet is all that's
needed.
When a gluten-free diet is allthat's ever been available.
(17:25):
And the second one is that thevoluntary labeling of gluten is
all that's needed when that'sall that's ever been available.
And the third one is somethingthat's really just so important
because the FDA had othered ourconsumer protection needs by
(17:46):
minimizing the adverse healtheffects.
Saying that, yes, it'spotentially life threatening.
You may get cancer, you may getdiabetes, you may get other
autoimmune diseases, but you'renot gonna go into anaphylactic
shock.
And you know, that's just such adisconnect to us and to me.
(18:09):
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 thehead, unless you were
unconscious or bleedingprofusely, you got right back in
the game.
Today we know to take all, treatall head trauma seriously,
regardless of whether you'reknocked unconscious.
So the idea that for a non ig emediated food allergy to be a
(18:33):
function of whether it causesanaphylaxis or not, is
completely the wrong framework.
And this is coming from the FDA.
And so we're trying to changethat, 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 eathere?
It was Buffet style, so Icouldn't have anything that
wasn't packaged or wrapped, but.
Before you even get to Buffetstyle, there was literally zero
(19:06):
food allergen labeling.
Nothing about gluten-free oreven the top nine allergens,
like it's literally the Food isMedicine Summit.
All I could have was a bag ofchips
Jon Bari (19:20):
and Well, they had apples for you.
Yeah.
So everyone else gets haveTurkey sandwiches and the like,
but this is just like, we werealso part of the White House
Conference on Hunger, nutritionand Health.
And I remember in solidaritywith Jax, I had ordered a
gluten-free meal and I'm servedvegan food and there's nothing
(19:41):
wrong with being a vegan, butthey're not the same thing.
And it's just, it's one of thosereal disconnects there.
So many people came up to Jaxduring the day and this was
what, 2024?
So you are, you're just almost11 at the time.
Mm-hmm.
And I don't think he had a fullunderstanding of the magnitude
(20:01):
of this day.
And so many people were like,you don't know how important.
What you just did was becauseyou put him on record.
And he gave a nonsense answerthat just was a bunch of
equivocation
Jax Bari (20:14):
secretary.
Alex Azar has celiac diseaselike me, and unfortunately we
didn't find out about that untillater in his four years when
the, when COVID was happening.
So it was very chaotic for him.
(20:34):
But he said in his four years,no one had came to him about
celiac disease or food allergiesin general.
So that just showed the lack ofadvocacy that was happening at
the time.
And he, he said that heabsolutely would've labeled
(20:57):
gluten under Falk.
But if, if, uh, someone had cometo 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 workevery day is because of people
like me who are advocating andpushing for a cause.
Amanda Whitehouse, PhD (21:21):
Yeah.
That must have stung though, forthe 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 unfortunatepart is that over the course of
many years, you know.
History hasn't been kind to theceliac disease from research to
funding to food allergenlabeling, and it's just been
considered trivial.
And look, I think that if youroll the clock back to late
(21:52):
1990s and early two thousands,people trivialize peanut
allergies, they ate trivializethe other food allergies, and
we've come such a far way.
But it reminds us how far wehave yet to.
Yet to travel on this journeyand for us, again, building
community with having like fromthat very first time we were on
(22:13):
Capitol Hill in January of 2020,we had kids on the hill.
We had kids telling theirstories as part of the celiac
journey Army.
It was fantastic because youhave in John Joyce, a physician
and a staunch Trumper and arepresentative Dwight Evans.
You have a staunch Democrat andfrom different parts of
(22:34):
Pennsylvania, but agreeing onthe common.
Issues that we need to takeCeliac disease more seriously.
And to us, that was soheartening to be able to have
that.
And we learn from that each andevery day.
And like Jax was saying, this isthis red, white, blue,
everything in between Celiacknows no party.
(22:55):
And, and you know, we just kindof 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 keepingkids healthy.
It's just, it's unfathomablethat some people are dismissive,
like, that's okay.
It's not anaphylaxis, so that'sokay.
Like that's just, it's.
Gut wrenching.
Literally, literally
Jon Bari (23:17):
and figuratively.
And it's, um, it's a hardjourney.
But you know, it's what's beenfantastic for us is the
community, and not just withinthe celiac community, but across
the food allergy community.
Because the commonality here ishow do you prevent the
immunological response?
It's through allergen avoidance.
(23:38):
And how do you have allergenavoidance?
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 researchand education, they held a
summit called Courage atCongress and there were about
300 or 400 people there.
And one of the main focuses wasthe Idina Act from Idina Tole
(24:09):
and.
She had gotten sick at her campfrom taking a medicine that her
parents believe should begluten-free based on the
ingredients.
But unfortunately, gluten is notrequired 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 theEdina Act.
Which is to require the labelingof the top nine major food
allergens and gluten on allmedicine over the counter and
prescription in the UnitedStates.
And that would just create asafer space for so many people,
(24:51):
whether it's celiac disease orother top nine food allergies.
And if you ask someone.
Like, who works at thesecompanies?
And ask them why don't they,there's no reasoning behind it.
It's just because they don'thave to,
Jon Bari (25:13):
companies do what they're required to do and
they'll take the path, at leastresistance and least liability.
And, and it's, and it's, it'sshocking there.
And, and we've had it where, youknow, Jax is 103 fever and we're
in CVS looking for.
Motrin or Tylenol that's labeledgluten-free and not knowing what
(25:35):
he can take and what he can'ttake.
And it's just, it's frightening.
It's just, it's a, it's a sadstate that, that, you know, to
the microgram, these companiesknow what's in every one of
their products.
Just tell us what's in theproduct.
And so it was amazing meetingAdina and her family.
Jax Bari (25:54):
I got to meet so many amazing kids.
I made so many friends overthose two or three days, and we,
whether it was a gluten allergy,a peanut allergy, an egg
allergy, a dairy allergy, wewere all there because of one
thing, and that was foodallergies.
(26:16):
Everyone there was like unitedin a.
Community.
Jon Bari (26:21):
And one of the things that, you know, that we're
really proud of that got usgoing a lot on some of our
advocacy was the faster act.
And, and you know, here it wasthe Sesame community, you know,
first asked the secretary of HHSto use their existing statutory
authority to require thelabeling of sesame.
(26:41):
And when HHS and FDA failed todo that, they went the
congressional route to forcetheir hand.
And, you know, we were brothersin arms with'em because while we
don't have a dog, you know, inthat fight we do believe that,
you know, we can help them andthat this is part of an overall
community.
So, you know, to that end, we'vebeen thrilled that with the re
(27:05):
the response.
And the support of Jackson's FDACitizen Petition That Fair has
backed this Consumer Reports,the Consumer Federation of
America, the University ofPennsylvania Law School,
children's Hospital ofPhiladelphia, children's
National Hospital in DC and Ican go on and on.
And it's a who's who of peoplefrom the food allergy space,
(27:29):
traditional food allergies, ifyou will.
From the Celiac space, nationalCeliac Association Beyond
Celiac, um, and then moms,fathers, you name it,
grandparents, teachers,psychologists.
And there are just so manyamazing perspectives in here
because they understand thechallenges both directly or
(27:52):
indirectly through a familymember or friend.
And here's one of theinteresting tidbits.
I don't know if you know Dr.
Virginia Stallings at all.
Um, but she's one of the world'sforemost experts on food
allergens.
It turns out she's actuallybased at Children's Hospital
Philadelphia and in charge of,uh, she's the director of
nutrition, and we got to knowher because the FDA in 2021 had
(28:16):
issued a document calledEvaluating the Public Health
Importance of Food Allergensother than the major food
allergens.
In that document, the FDA citedwork by Dr.
Stallings from the NationalAcademies of Sciences, that
basically they used her researchto justify that they will only
evaluate those food allergens.
(28:37):
It can cause anaphylaxis.
And I said, you know, and I wasscratching my head and I was in
my office, I think it was on aSunday afternoon, and I'm trying
to go through these documentsand make heads or tails of it.
This report is 500 plus pagesthat Dr.
Stallings chaired and edited.
And I was like, wait a sec, waita sec.
And I, I called her and I thinkshe thought I must have been
(29:00):
nuts, right?
So when I get to work on Mondayor Tuesday, and she's like,
John, let me stop you rightthere.
I think.
Gluten should be required to belabeled.
I think that gluten is just asserious as IG mediated food
allergies are with the majors.
But the FDA funded my researchback in 2016 and the FDA and my
(29:24):
statement of task told me not toinclude celiac and not to
include gluten, and I'm like,wow.
Here's the twist to this.
In 85, the FDA issued a finalrule.
In it, it said all gluten grainsshould be required to be
declared on food labels in 1985.
(29:47):
Where are we today?
40 years after that fact.
I feel that as a community, ifwe work more together and lessen
silos, that we can really bethat more like Horton hears a
who, where it's that combinationof voices that we amplify each
other.
And that's why we supported theFast Act.
(30:07):
That's why we support the AdinaAct and we support other common
sense solutions because we knowour community will be better and
safer for them.
Amanda Whitehouse, PhD (30:17):
Yeah.
So tell everybody listening howthey 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-freefinds, and that's at gluten free
Finds pa.
And the second is at Celiacjourney.
Um, our website, celiacjourney.com includes lots of
(30:40):
information on our differentinitiatives in terms of research
we're doing with Penn Medicinein terms of trying to find a
izing therapy.
For celiac disease.
Um, and we're doing that withNobel Laureate Dr.
Drew Weissman.
Um, so it's this fantastic thingwhere Jax had to leave school
early one day and miss a scienceclass, but he got to introduce,
(31:02):
you know, the Nobel Laureatestudying celiac disease for Jax
and 729,000 kids like Jax.
Um, but on the citizen petitionside, they can go to select
journey.com and they can findinformation.
We want people in just theoverall food allergy community
to say, this is common sense andthis is for our brothers in arms
(31:25):
here.
And so that, that, that's whatwe're hoping for.
And one of the things we'll bedoing in the not too distant
future is Jackson's gonna hostan advocacy night just for
children and their, and theirparents.
To explain how to get to acongresswoman, how to get to a
congresswoman, how to get to asenator and do that on a state
or local level.
(31:46):
Moms, you know, get a lot ofattention when they speak up.
Uh, dads are just below that,but kids, when they elevate
their voices and share thepediatric perspective and say, I
need help, please help me.
It's an amazing call to actionthere.
Amanda Whitehouse, PhD (32:03):
Right.
You're right.
And I'm glad you said you'reincluding parents because a lot
of us don't know, you know, I'mjust learning and seeing behind
the scenes.
So the advocacy night, is itgoing to be a virtual event?
Yes.
I hope Uhhuh.
Jon Bari (32:13):
Yep.
Absolutely.
And we also have a communitynight at Citizens Bank Park when
the Phillies take on the KansasCity Royals.
And we'll be doing that, um, onFriday, September 12th, and
we'll be celebrating Celiacawareness night.
Um, which is one day beforeInternational Celiac Awareness
Day.
(32:34):
Um, so we'll be doing a wholebunch 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 knowthat, 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 helpedus so much.
She is also the lead sponsor ofSenate Bill 6 29, and that would
(33:06):
be to require the labeling ofpollutant 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 federalgovernment doing it,
Pennsylvania's gonna take thelead here to protect Celia Acts.
Jax Bari (33:28):
And then having one or more states having this with a
patchwork system reallypressures the FDA, um, a lot
more to require the labeling ofgluten 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 inthe notes for the show.
So many people wanna help, butit's so hard to know what to do.
So yes, if we know who to reachout to, it's just good to give
people really specific actionsteps.
I think
Jon Bari (34:01):
what's so important here is that, you know, it's
kind of the coalition of thewilling here that, to share that
perspective because while therehave been different times in our
journey here.
I think that one of the mostmoving ones was when Jax got
gluten in 2023, and that was theworst.
(34:22):
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 termdamage.
Then there's the long termdamage where gluten damages my
(34:43):
small intestine.
And in the small intestine thereare these finger-like
projections called vii, and theVII absorb your nutrients.
So I was diagnosed when I wasn'tgrowing.
And the reason I wasn't growingwas because my VII just weren't
(35:04):
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 havedone is to take him to a
hospital, to get an IV to behydrated.
And it's a horrible, horribleexperience where you're
(35:29):
powerless to help your child.
Um, so I think that reinforcedto 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 onthe note about, about getting so
sick, but your spirit in life,which is what mom and I mm-hmm.
(35:52):
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, andsquash.
Um, I love skiing in the winter,swimming in the summer, going to
overnight camp.
You really can't let foodallergy stop you.
Amanda Whitehouse, PhD (36:18):
All of us parents want every child to
have that freedom and thatsafety that you're describing.
It's so important.
Jon Bari (36:24):
Oh, thank you.
Thank you.
It's this indomitable spiritthat, that, you know, neither
Leslie nor I had to worry aboutthis when we were children and,
and to me, I think one of thegreatest challenges is that loss
of the carefree childhood.
But that to balance it out withsomeone who will travel, who's
(36:45):
not scared and you know, willface it head on to us, is just,
it's an amazing way to navigateand, 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 youngperson like you, there's amazing
adults out there.
Like you said, John.
People listen to some extent tomoms and dads who share their
stories, but I have met so manyamazing kids who are learning
how the system works.
They're learning how to speak upand make change, and we're gonna
get as far as we can get you.
But once you are all in charge.
(37:17):
I can't even wait to see what'sgonna 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 orthrough Instagram, send us a
direct message and become partof the Celiac journey Army.
And we need children, we needtheir parents, we need them in
different states.
And we know that one person.
Can spark change in others.
(37:44):
We're honored that for theCeliac 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 sharingboth the personal and the
systemic sides of Celiac diseaseand their advocacy in this area.
Their voices remind us thatawareness is just the beginning
and action is what makes lastingchange.
So here are three steps you cantake after listening to follow
up on our conversation today.
Number one.
You can followthem@celiacjourney.com, and
(38:21):
that's where you can find thedetails about all the
initiatives and efforts thatthey talked about today on the
show.
You can follow them on socialmedia at Celiac Journey, and.
Then you can take step numbertwo, which is to support the
efforts that they're working on.
And number three, just staytuned.
The rest of the month I'm gonnabe talking about this topic.
So if you or someone that youknow and love manages Celiac,
(38:42):
and you wanna hear moreconversation about it, I will be
doing that with you all month ifyou happen to be in the area or
up for travel on September 20th.
Like I said, I will be inFitchburg, Massachusetts at the
Wicked Gluten-free Expo talkingabout the social and emotional
impact of Celiac, and I wouldlove for you to join me there.
Thanks for listening, and ifyou're finding the show helpful,
(39:03):
I would appreciate it so much.
If you would give me a rating,leave a review, or share it with
somebody else who mightappreciate it.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
If you have any questions aboutyour own medical experience or
mental health needs, pleaseconsult a professional.
(39:24):
I'm Dr.
Amanda Whitehouse.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
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