September 9, 2024 • 44 mins
In this heartfelt episode of Covering Your Health, host Evelyn Erives sits down with Jill and Caden Henderson to discuss their journey through Caden’s recent celiac disease diagnosis. Join us as we explore the challenges and triumphs of adapting to a gluten-free lifestyle, the emotional impact on the family, and the practical tips they’ve discovered along the way.
Jill shares her perspective as a mother, detailing the initial shock of the diagnosis and the steps they’ve taken to ensure Caden’s health and well-being. Meanwhile, Caden opens up about his personal experiences, from navigating social situations to finding delicious gluten-free alternatives.
Whether you’re dealing with a similar diagnosis or simply looking to understand more about celiac disease, this episode offers valuable insights and inspiration. Tune in for an engaging and informative conversation that highlights the resilience and strength of the Henderson family.
For more information on this show's topic visit IEHP.org or (800) 440-IEHP. To follow Jill and Caden’s journey find them on Instagram @caden_center & @jillbee833 Additionally, you can subscribe to Caden’s YouTube Channel: https://www.youtube.com/@CadenCenter
Reach out to Evelyn via Instagram @evelynerives or email her at EvelynErives@iHeartMedia.com
Jill shares her perspective as a mother, detailing the initial shock of the diagnosis and the steps they’ve taken to ensure Caden’s health and well-being. Meanwhile, Caden opens up about his personal experiences, from navigating social situations to finding delicious gluten-free alternatives.
Whether you’re dealing with a similar diagnosis or simply looking to understand more about celiac disease, this episode offers valuable insights and inspiration. Tune in for an engaging and informative conversation that highlights the resilience and strength of the Henderson family.
For more information on this show's topic visit IEHP.org or (800) 440-IEHP. To follow Jill and Caden’s journey find them on Instagram @caden_center & @jillbee833 Additionally, you can subscribe to Caden’s YouTube Channel: https://www.youtube.com/@CadenCenter
Reach out to Evelyn via Instagram @evelynerives or email her at EvelynErives@iHeartMedia.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, Welcome to another episode of Covering Your Health with
Evelyn ERIEVEZ presented by I EhP. Oh my gosh. I
can't believe that here we are yet again. We're on
Zoom today and for a very important reason we'll be
getting to very shortly. I can't believe it. Since late
last year, we have been talking about so many important topics,
(00:20):
engaging topics, and I've been learning so much about different
just different things, whether it be about healthcare, about different disorders,
and today is no different. We are going to have
a really fun and very candid conversation with a special duo,
(00:42):
a mother and a son named Jill and Caden Henderson.
They are good friends of mine and I'm so excited
that I get to have them on the podcast. They're
going to talk about navigating Cayden's Celiac disease. They're going
to talk about his diagnosis, what they've learned, and how
they are utilizing their social media to get the word
(01:02):
out and really, you know, to just engage with people
and maybe even a community that also is dealing with Celiac.
So what is Coeliac disease? According to Celiac Disease Foundation,
Coeliac disease is a serious autoimmune disease that occurs in
genetically predisposed people, where the ingestion of gluten leads to
(01:26):
damage in the small intestine. It's estimated that one in
one hundred people worldwide affected by the disease, but really
only thirty percent ever properly get diagnosed, which is just
what crazy, right, And there's no pharmaceutical treatments or cures
for celiac, So we're just scratching the surface. We're going
(01:46):
to dive into this topic and I can't wait to
get started.
Speaker 2 (01:51):
Welcome to Covering Your Health, a wellness podcast dedicated to
covering all areas of living a healthy and happy lifestyle,
from healthy hearts to understanding health plans and everything in between.
Each episode will provide you with a better understanding of
managing your health, preventative care, and staying on the right
path for your family's wellness journey. The Covering Your Health
(02:13):
podcast is presented by I e HP. Now your host
Evelina Revez.
Speaker 1 (02:20):
Well welcome, Jill and Caden. Hi, how are well?
Speaker 3 (02:24):
Thank you for having us.
Speaker 1 (02:26):
I'm so excited. So I have known both of you
guys for quite some time now. I'm so exciting to
get to have you on the podcast. What I will
say is, though it's kind of a bummer why we
have to have you on the podcast. It doesn't agree
need to take a disease for us to get together,
(02:46):
but it is nice to always see your faces. So
let's get started. Let's educate some people about well, really,
what's going on in your lives. Let's start first with
both of you, Jill and Cayden. Tell us about yourselves.
What do you went to, where are you from, where
do you live in the ie? All the things?
Speaker 4 (03:04):
God, Yeah, so we live in Redlands, California, and pretty
much a lot of my life is just sports and
stuff like that. I want to be sports broadcasts, want
to grow, so I do a lot of stuff involving that.
I also am in college about to ender my sophomore years.
Pretty much those two things are a lot of what
I do.
Speaker 3 (03:22):
Yeah, and I just spend all my time driving kat
in to really cool sports thing that he's older now
pretty soon he won't beat me. I work in the
nonprofit space, and so that was one of the reasons
that inspired Kayten to do a lot of work for
the hospital. The over twenty thousand dollars he's collected from
Homa Linda University Children's Hospital and the Teddy Bear Drive
(03:44):
and stuff he's done. So it's good, really neat to
be on that journey with him.
Speaker 1 (03:47):
You and I have a lot of that in common,
which is super fun because you've worked in that space
for a long time. I've volunteered in that space for
a long time, and it rubs off on the family
and that is so, so, so cool. So we'll talk
more about that, because I do want to talk a
lot about the Teddy Bear Drive and get into all
of that, but let's get into the nitty gritty of
why you're here. We want to talk about Celiac disease.
(04:11):
There's a lot unknown about it, Kayden. Can you tell
us a little bit about like your diagnosis, how much
of a relief it was when they finally figured out
what was going on with you? Tell us the whole story.
Speaker 4 (04:23):
Yeah, So I had a lot of stomach problems like
growing up, and especially kind of got at its worst
when I was in about like sixth grade, and they
had to be admitted into the hospital for a week
or so. And back then they took a lot of
blood tests with me and actually did it tess Celiac disease,
but it came back as like unknown or something exclusive. Yeah,
(04:44):
so they didn't know. So we go on a couple
of years something issues died down a little, but there's
still kind of lingering and stuff like that. And so eventually,
you know, we find ourselves back in the fact that
we're like, hey, these are my symptoms. You know, I've
been struggling with some of each stuff like that. They're okay,
let's have you do some blood work. So we did
did the blober again and the test came back up
or see that disease as positive. So and that was
(05:05):
two and about two and a half years ago. So
it was honestly kind of surprising because I got my
whole life and we'd already tested for it and we
didn't know I had it.
Speaker 5 (05:15):
So to find out and at least.
Speaker 4 (05:17):
Know that I knew what the issues were and it
was unknown, because it's scary one it's happening and you
don't know what it is or what it could be.
Speaker 5 (05:23):
It definitely was a relief.
Speaker 4 (05:25):
And then immediately once we got that diagnosis, we talked
to the doctor's course and dietitians and stuff like that
to set up my diet and that's kind of what
we've been doing these past couple of years.
Speaker 3 (05:35):
Wow, that was really interesting. What I didn't know about
Cilly activities Hill Caden's diagnosis is that you and I
Evelyn could have the gene right now and we just
don't know, and then there's a triggering event. It could
even be something. To my understand it could be something
like the pregnancy. For example, Caden's hospitalization, what was happening
with him at that time made him activated it, making
(05:55):
the test inconclusive, and that's why it still took us
a few years down the road to figure that out.
So it's really tricky because it's very normal to get
diagnosed later in life, but the longer you go having
it and continue the glutant is extremely dangerous for your body.
Speaker 1 (06:10):
Wow. I have a friend who actually kind of had
a similar situation, but hers wasn't triggeredun till she was
old or older till she was in her thirties, and
then that at that point it was an issue within
her like stomach lining and then her intestines and stuffs,
which is just so wild. You would think that they
would be able to test that so early or find
(06:31):
you that gene right, Like, okay, well do you have
that gene?
Speaker 5 (06:34):
Right?
Speaker 1 (06:34):
Are there therapies or any of that kind of stuff
where they can test you to see if you have
the gene.
Speaker 3 (06:39):
Testing is possible, there's no sort of treatment, there's no
sort of way to avoid it getting active. So I
was tested for celiac with a blood test, and so
is Katon's dad. They recommend when one family member gets diagnosed,
the immediate family immediately also go and get tested because
it's very dangerous if you have like silent celiac and
you're not presenting with the symptoms that came and had.
(07:00):
Everyone's case is kind of a little different, which is
what makes it.
Speaker 5 (07:02):
So hard to diagnose.
Speaker 3 (07:04):
So I could have had silent celiac and just been
like I feel tired all the time, well don't we all,
and not known that it was the glue that was
still doing something to my body. So it's it's hard,
but you can do the test. I didn't have it,
his dad didn't have it. It's not I think I
think you'd have to pay. It's like outside the scope
of what normal insurance says to find out if you
have the gene and I don't want to know if
(07:25):
it was my fault or not, so I will be
doing that. I just always it's your dad. It's your dad.
Speaker 1 (07:33):
That's hilarious. I'm not going to take the blame for
this one.
Speaker 3 (07:37):
That's it.
Speaker 1 (07:40):
Okay. So let's talk a little bit about those symptoms, right,
I know this week you actually had sort of like
I don't what do they what do they call it?
What do they call it? When you maybe had a
contamination or some sort of thing. What do you I mean.
Speaker 5 (07:56):
Gluten or yeah?
Speaker 1 (08:01):
Yeah, oh that's all I got glutened. Oh that sounds so.
Speaker 3 (08:07):
Cle you forget other people don't know. So I was
at a family event, like, oh you got glutens. I
don't just walk.
Speaker 5 (08:12):
Away sick and it's just easier.
Speaker 1 (08:14):
Yeah. What what does it feel like to get glutened?
When you're in this state?
Speaker 4 (08:21):
It's basically it's basically the stomach flu, but like way worse.
Like obviously your stomach hurts and you feel you feel
really tired. Some people I know, like are on the
verge of like passing out sometimes when they when they
have and stuff like that. So it really just kind
of forces you to just stay inside and just you know,
have whatever needs to happen for you to get better.
(08:44):
But yeah, it really just kind of stops your day
and you got to live your life around it.
Speaker 5 (08:49):
When you do get gluten.
Speaker 3 (08:50):
And unlike the stomach flu, there's not you don't really
want to suppress the symptoms. You have to kind of
let your body do whatever it has to do to
get through it. I know some people celiactic like activating charcoal.
We haven't tried that. There's a lot of sort of
controversy once you're in that community of what's appropriate to
do with Cadence. Just rest stays super hydrated like a
brat kind of diet that the brat diet involves bread
(09:13):
and he can't have that as much as we can
and try to just you know, wade through it. But
it's interesting it can be so different. When he first
went gluten free, he had an attack after a basketball
game which was such severe pain in his stomach, and
he has a high threshold for pain. I thought he
was gonna have to take him with a doctor. Then
there was another day when he did pass out and
that night he woke up nauseous and it was almost
(09:35):
like and I could say with confidence he was not drinking.
It's almost like he was drunk because he was so disoriented,
and people get brain fog and some people are like, oh,
I get a migraine. So it's it really runs the gamut.
But the longer you spend on a gluten free diet
when a mistake is made, the worst the reaction is
because your body is so starting to heal, So when
that gluten comes in, your body just absolutely tries to
(09:57):
reject it and like fight against you.
Speaker 1 (09:58):
Basically, Oh my gosh. It's like almost like getting sick
when you build up antibodies. Right like after COVID, nobody
had been around anybody, and then all of a sudden,
we all.
Speaker 5 (10:08):
Go back outside, all sick.
Speaker 1 (10:09):
Everybody is just floored. We're all think again exactly. Oh
oh my goodness. Okay, I mean that sounds horrible, and
I'm so sorry that you've had to even go through that.
And I know you had a little bit of an
episode this week too, and I like, all I kept
thinking was, let's push farther, Let's let's let him have
all of the time that he needs. Oh.
Speaker 3 (10:29):
I think that's the most heartbreaking part is it's hard
to watch your kids suffer or be sick, but it's
the life social opportunity impact, Like we're so excited to
come in studio and get to see you and ye
little things like that we have and we try to
be so careful when we have something big coming. But
you know, a stuff happens, and so sometimes it impacts
of life in a way that kind of breaks my heart.
(10:50):
But we just do the best we can. We get
better every year, we get a little smarter.
Speaker 1 (10:53):
Yeah, well, we're going to talk to you more about
like how you've had to make adjustments in like everything
in just a few I wanted to talk a little
bit about how you've been utilizing your social media. So
you have been on your platform sharing your stories. You
guys are both both very public. I've known you both
to be very public for a very long time, even Caden,
(11:13):
when you were very very young. You've been very public,
which has always been so fun to watch you, you know,
grow up. I feel like I've watched you grow up.
So tell me, like, why do you feel it's necessary
to share this particular story, because it's always been something
else that I've always followed from you both. You know,
different types of stories and now it's this journey.
Speaker 5 (11:35):
Yeah.
Speaker 4 (11:35):
Well, I think what's interesting is, well, first of all,
when I found out i'd see like disease, I didn't
know what it was, you.
Speaker 5 (11:40):
Know, like you had to get the big born the
papers that explained it to us.
Speaker 4 (11:43):
So immediately, you know, what we did is we went
and found other people who talk about like disease. People
have whole Instagram accounts where they suggest food and you know,
they kind of surround that. So learning that it wasn't
that well known that there are other people doing it,
that makes us want to do it because I'm we
know the pain of it, we know it's not fun.
So if we're able to get people to spread awareness
(12:05):
about it, so that way, hey, like if you know
there's one person's like, oh I kind of have these symptoms,
I kind of experienced this, if that can you know,
help them and maybe they can help ease the pain
and not go through it and get diagnosed and that
it helps. So just to spread awareness about something because
it's really not like as talked about as you know,
other diseases, just because it's not as common.
Speaker 5 (12:22):
Yeah, so it's all about just spreading awareness.
Speaker 3 (12:24):
Yeah, it's just it's so frustrating to go through life
with Celiac and not be able to find restaurants that
are fluten free, or people would tell me it wasn't real.
When I told them Kade's diagnosis, They're like, well, you
seem a little extreme with the whole cross contamination thing,
and I'm like, yeah, I don't want them to die early,
you know, sorry, So the right the fight you have
to fight against even sometimes like family members and friends
(12:46):
being like, no, guys, this is really You can't just
have a little You can't just come over and use
your puts in pants. You do seem crazy. When they
told me what I had to do, I was like,
that seems extreme, guys. And then once I saw it
in practice and saw the difference of tiny mistake make
so I thought, if you talk about it more, you
educate people on it more, would just make anyone, including
our lives easier for someone with celiac. But it's just
(13:09):
hard to find options of places to eat out, and
there are times we all prefer to, you know, home
cooker food. That's great, but you're on the go sometimes
and you need a safe place where you can eat,
or you want to go on vacation or travel, and
we feel so limited. So the more you talk about it,
the more I feel like, you know, so, if you're
listening in lin Empire, we need a gluten free restaurant.
Speaker 4 (13:27):
Yeah, I think. I think especially too. A lot of
times it gets confused with just having like a gluten
free diet or just being gluten free, and there's those
stereotype with those people that are gluten free. It's like, oh,
you can done everything, you don't need diditionally eat that's
too much? And then there's Celiac disease, which is you
have to do it, You're not choosing to do it
to be healthy or whatever.
Speaker 5 (13:43):
True.
Speaker 4 (13:43):
So I think that's something that also people kind of
get mixed together. And that's a big reason why I
think restaurants too, like darns many because some restaurants have
gluten free choices, but they're not Celiac friendly.
Speaker 3 (13:54):
Animation.
Speaker 5 (13:55):
Yeah, I should say so.
Speaker 4 (13:58):
A lot of it is just like blurred and trying
to separate what our gluten uh like gluten died is
natural Celiac diet right of differences and sickness and stuff
like that.
Speaker 1 (14:07):
No, it's so funny. I went to a restaurant and
I asked, you know, like, hey, do you have like
a gluten free pizza or something like that? And they
gave me the like weirdest look, and I thought, how terrible,
Like I'm just I know I'm sensitive to gluten, but
I don't have celiac, So I know, like what that
has to feel horrible when you're going somewhere and you're like, hey,
(14:30):
I really can't have said like I just know I
can't have.
Speaker 3 (14:34):
That, Evelyn. The amount of money I spent in tipping people,
because first of all, if you this gluten free is
a substantial price different it's going to be more expensive
in a restaurant, in a grocery store. But then when
we go, like say, for example, to go Chipotle, I
would say, hi, my son has It's just easier to
say gluten allergy than try to explain the whole thing.
So my my son has to likelutinega. I need you
(14:55):
to take your gloves off, wash your hands, put new
gloves on. Be the only person who we have a
the food, put the lid on, and there's a line
of people behind you. It's not a comfortable feeling. And
I want Kyten to feel empowered and comfortable but it's
also hard to just walk up and not apologize to
the person, apologize to everyone behind.
Speaker 5 (15:13):
You.
Speaker 3 (15:13):
Feel like you're walking this fine line. We've never had
a native experience, honestly, but I'm just like waiting for
a tab.
Speaker 1 (15:21):
He's funny.
Speaker 3 (15:22):
Thank you.
Speaker 1 (15:23):
I will give you all the money. Please make this
easy on me. So okay, I mean, I think we
kind of covered a little bit of this, But what
are some more misconceptions you've learned about Celiac that maybe
even surprised you.
Speaker 3 (15:37):
That's fake. I mean that that's the big one, right,
that is fake. As soon as Kan was diagnosed, the
first piece of advice that the doctor gave me was
one to join support groups immediately because it is so
different for every single person. Yeah's share of informations than beautiful.
But he said you have to get rid of all
your pots and hands because there's scratches in most pots
(15:58):
and pans that you've had over the years and the
gluten can live inside them, which really made me question
how clean our dishes are. He's that crazy. Now, I've
heard some people who are not experts, who are not doctors,
sort of social media influencer in the Sealac spacey. Oh,
you don't need to do that. But you can't throw
someone gluten free and use the pots and pans and
they're still getting sick. You won't know if you're doing
(16:19):
it right. You won't know if you can't make those risks.
I would say the misconception is people don't understand how
expensive celiactive. The food is so expensive. And the other
thing that surprised me, which really blew my mind. You
are like five times more likely to develop a second
autoimmune disorder. You are more likely to develop more food allergies.
(16:40):
In Caden's case, he now can't have dairy or oats,
So we're slowly marking off all the food in the world.
Speaker 1 (16:46):
Oh no, we can you eat fruit?
Speaker 5 (16:50):
Yeah, it's quicker to da any things I can than
that I can't.
Speaker 1 (16:53):
Yeah, like all the fruit, all the veggies, all the fruit.
That's it right.
Speaker 3 (16:57):
You can't see him, but he's a skinny guy that
you understand.
Speaker 1 (17:02):
Oh my gosh, that sounds horrible, Like I don't even
know how else to say that. That sounds horrible, but
it is.
Speaker 3 (17:10):
He's a trouper, but it's rough.
Speaker 1 (17:11):
I was just gonna say, you are so positive, Okayden
because you're like laughing about it and you're like, eh,
well this is okay.
Speaker 4 (17:18):
I mean yeah, I mean like the first time, like oh,
when I got gluten, like that was kind of scary,
so I didn't know what it was gonna be. But
now like obviously I don't want to get's like it's
not fun. I wouldn't choose so and I'm like, Okay,
I know this is going to happen. Is it frustrating?
Is it annoying what I got to be doing something else? Yes,
but I know three or four days, like I'll be okay,
I can move on with my day. I survived it.
You know how many more times I can do it?
(17:38):
So eventually you kind of just get used to it.
And I didn't really have trouble accepting that I had it,
you know, like yeah I missed some food occasionally, but
I'm just like, you just gotta go with it. You
can't have it stop your life because I know, letting
you win at some point. So I think eventually just
kind of get used to it and just kind of
and it's just.
Speaker 3 (17:53):
Nice to have answers. Well I had an answer, because
the other thing is, you know what affects your teeth.
It affects like the color of your teeth and if
they're healthy or not. So when Katan was little and
growing up, I would give a like I was doing
I feel like I was doing something wrong. And I
knew that Kayden is eating healthy. I knew he brushed
his teeth. But there are all these things that now
make sense that didn't before. So having answers, even if
(18:14):
you don't like them, is better than not having any.
But it's all about perspective. You know, people will have
cancer and are terminally ill, and this is not fun.
And if Kan didn't go gluten free, he would be
way more likely to get cancer. We understand that, but
there's illnesses out there, especially when we're in the hospital.
We saw where people are in so much worse shape
and are really suffering. So do I love it?
Speaker 5 (18:35):
No?
Speaker 3 (18:35):
Am. I incredibly grateful every day that I get up
that it's an autoimmune thing that we can control and
that he's not it's not like threatening. That's all the matters.
So there's days we get down about it, but at
the end of the day you have to put it
in perspective. Kayden's all grow all healthy and you know,
around so that's all I care.
Speaker 1 (18:50):
About, No, thank God, of course. Yeah, And that's good perspective.
Is everything like it really really is. I think about
days I have at work sometimes where I'm like, I'm
so exhausted, my brain is fried, but I love what
I do. It's okay, Like I could be doing something
way worse I could be, you know, And that's a
way different perspective on it. But it's not a just
yea yeah, those kind of things. You have to have
(19:12):
a positive look on things to make to get it,
to get through, to really get through anything. So with Celia,
explain to me, because I know you guys have probably
learned a whole lot now through the through going through this.
What is it exactly? So it's we know it's a
gluten allergy. It affects your intestine though, right, so what
is it that could potentially get to a cancer situation?
Speaker 3 (19:36):
What?
Speaker 1 (19:36):
What is something eating at it? What is happening?
Speaker 3 (19:41):
So it's technically an autoimmune disorder and not at all
an allergy. Came to an allergy test and he's not
allergic to gluten, which just made that what yeah, now
the slang from when we go out to eat gluten
allergy because it's just too much. And the cross contamination.
You just say that it was because it's so easy,
you know, touch one thing of blue, touch another, He's
going to get sick. So I don't understand the cancer connection.
(20:05):
I don't know if you knew either.
Speaker 2 (20:06):
No, not.
Speaker 3 (20:08):
That's just one of the first things the doctors told
us that. I know, Came's very mature and was going
to do the diet anyway, but was very like, oh,
we have to take this serious. But I do know
what happens when you eat the gluten and you have it.
It's the v lead and like the whining of your
intestine looked like fingers, and Caden's was essentially like blunted
and had very little like bumps in between, and then
(20:31):
you can't absorb nutrients. And so Caden's was, I mean,
his markers were so high and he in theories were like, hey,
Cave's just a kid's stomach problems.
Speaker 5 (20:39):
For a while.
Speaker 3 (20:39):
It is just where I was going with until it
got worse because I had seen doctors, he'd been to
the hospital. Like, I wasn't getting anywhere other than he
has a sensitive stomach.
Speaker 5 (20:46):
I'm a bad cook.
Speaker 3 (20:47):
I don't know, so at Caden's point. I mean, there
was no we didn't see there's no like specific test,
but it was obvious by the color of his skin.
I mean his his skin like actually improved itself. It's
just your body almost starts to attack itself, and so
first it starts in the vlei and it's your stomach,
and then in Kayten's case, it went to teeth, it
(21:08):
went to how much energy he had. And I loved Kayten,
He's always been delightful, but he is in such a
better mood since she went to the concrete. But if
you he thought it was normal to feel that way.
He didn't know any different, and he thought I was
walking around with my stomach feeling like that all the time,
where I was feeling nothing. So it's just really interesting
the science of it, how that one little ingredient can
basically turn your whole body against yourself.
Speaker 1 (21:31):
So I think, what I so because I have only
because I have a friend who actually has celiac that
I even know anything about it. When I was so like, wait,
what do you have? And her stomach would bloat, and
I mean like literally I watched her have, don't I'll
tell a silly story we went to a waffle house, okay,
and she had already been diagnosed okay, but she really
(21:54):
wanted to have what we were having. She didn't have
anything gluten in it, but that is like king contamination
waffle house. You watched them the food, so she so
she like made you know, she said, okay, well I
have an allergy. And they're like, okay, we're in the South.
(22:17):
I'm sure, you know, They're like sure. She gets, she eats,
She's so happy with her food. We start to leave
and instantly, I mean instantly, she was sick and it
was like get her back to the hotel. We were
at a conference. I we had like run her across
the street, get into a restroom, and then get her
(22:38):
to her room. And oh my god. It was horrible
and I couldn't help. But like we kind of laughed
because we were like, you you knew where you were,
you knew that. I mean we joke about it now
too with her, like remember that one time you had
to have waffle house And she just laughs, she goes,
I don't know why I did that, Like I literally
(23:00):
it just looked good, it smelt good. I had to
have it.
Speaker 3 (23:02):
I get it Cayden has amazing will power, but I
will last two seconds. I'd like this cookie was good.
Speaker 1 (23:09):
How do you do it? You are superman like for real?
That is like crazy. So she was telling me about
the intestinal you know, with I think, what did you
call it? The V what did you the VLEI? So
she was telling me hers was gone her and she's
in her thirty so well at that time, in her
thirty so she was like, when she was diagnosed, it
(23:31):
was already at that point where it was completely gone
and it was eating into her actual intestine. And so
that was when they were That's when they told her,
this is when you get cancer, because what ends up
happening is you get intestinal cancer because you're it's just
it's just constantly being eaten at, and then the antibodies
(23:52):
and like all these other little things that happened. And
I'm not a doctor, so I don't want to go
say anything else further. Yeah, I'm like, okay, you get
the point. But anyway, when it gets to that point,
that's when you get to a super duper risky place.
That's why you have to find this out as early
as humanly possible. And I know that there's many doctors
out there that don't even want to test you for it.
(24:13):
You know, you could be going in with stomach problems
and stomach problems and stomach and they're just kind of like, no,
it's not that, No, it's not that. And I think
that's another thing. You have to find the right doctor,
and you have to find a doctor that will advocate
for you. How were you How was that experience for you?
Speaker 3 (24:30):
Terrible?
Speaker 5 (24:30):
Yeah, that was it was. Yeah.
Speaker 4 (24:32):
So leading up to that first or one of the
first when I was in the hospital, Yeah, obviously the
stomach issues were there and we got like so many
different diagnoses.
Speaker 5 (24:44):
Was like stomach.
Speaker 4 (24:48):
Just like you know, do it better that, Yeah, basic stuff,
and that was.
Speaker 5 (24:53):
Yeah. We had like a couple of doctors that we
had once to the emergency room a couple of times.
It was never brought up.
Speaker 4 (24:58):
It wasn't until I don't even think it was brought
up in the hospital and they just so happened to
test they take. Yeah, but I wasn't until like probably
the I don't know, like for their big overall doctors
that doctor. Yeah, and they finally got to it. But
it's just crazy, and I think that just shows how
you know whatever, they don'tant a test. But also it's
just not like the first thing people think of, which
(25:19):
is why it can last so long. And you know, luckily,
you know, we got it at my age, which I
was still you know, pretty young. Yeah, obviously it would
have been nice to get it when I was in
sixth grades that I was school. Sure, but at least eventually
we got and we didn't get to where it was doing,
like it was obviously very damage it was doing like
like yeah, like cancer level.
Speaker 3 (25:36):
I mean, it just really comes down to I never
had an experience like that before as a parent, any
parent who's listening or watching advocating for your child, because
there was a point where I was in the emergency
room like essentially screaming, and this was a different situation.
You know, it is a tie to the celiac, probably,
but we kept going to the doctor. We went so
many times I won't name the healthcare provider that before
(25:58):
I even I said to my parents aftergot to the hospital,
I'm gonna write a letter and be like, I want
a refund for all the time we went to the
same urgent here twice in one weekend. One time they
refunded my my of brick and said the letter I
want to write that letter books because gross misdiagnosis situation.
So shortly after that we changed to a different pediatrician
(26:21):
and it was during COVID, so it was a little hard.
So I was like, hey, Cayden's experiencing this, try this,
because they weren't letting us go into the doctor's office
if there wasn't anything against this particular doctor. And she
was the first one to say, you know, if you
tested for celiac and I was like, no, I don't
know what that is. And she goes, well, it says
here you did at the hospital and it was inconclusive,
and so there's another you know, maybe someone should that
(26:43):
I'm not.
Speaker 1 (26:46):
Let's figure that out. Yeah, means let's try again.
Speaker 3 (26:50):
Right, So I just feel like I felt so I
love Cayden so much, and I worked so hard to
be a really diligent, caring parent, and you know, I
like to go to McDonalds. We don't not have fun
with food. Well we don't have any fun with food now,
but we too. And so I just felt so bad
for so long and like I wasn't doing enough. And
(27:11):
so I would say, if your kid has anything weird
going on with them, Like you write it all down.
There are things that now I realized I could have
said that we're connected, that might have made it trigger
in someone's head. Because every illness you're sharing. No, it's
to advocate. It's okay to make appointments. It's okay to
say no, I need more, because that's what finally got us,
you know, a new doctor and being really forthcoming with her,
(27:33):
really oversharing and I mean oversharing, that's.
Speaker 1 (27:36):
What got us to the doc to you literally have to.
And I think that's where honesty is the best policy.
Right it's with your doctor. Don't don't go to the
doctor and be like.
Speaker 5 (27:46):
I need.
Speaker 3 (27:49):
No.
Speaker 1 (27:49):
Look, it is volatile. What is happening in my stuff,
It is volatile what is happening in the restroom right now?
Like you have to tell them the truth. So I
feel like this podcast name, like I think almost every
episode that we have done of the Covering your Health
podcast has been about advocating for yourself. So I feel
(28:11):
like I'm at some point I have to change the
whole name because Advocate for Yourself podcast, Like it's because
it's true or it's it's take somebody with you who
will advocate for you if you right. Yeah, and in
this case, you had your mom, which is like, thank god, right,
and thank god your mom was listening to you and
(28:32):
understood and seen this process and all of that. So
let's talk about lom Molinda University Children's Hospital, all that
really great work that you've been doing. I have watched
you do a lot of this work. I've supported it
on the radio. I've been so excited about talking about
it every time you do this. Let's talk about the
impact that the hospital had on you and your diagnosis,
(28:53):
and then why you felt like it was the right
thing to do to support the kids there too.
Speaker 4 (28:59):
Yeah, so I said earlier, I was sent to hospital
for about three or four days for a summit issue
which we now know may have been linked silia and
all that, so it all be next. And when I
was there, I had a Teddy Bear with me to
kind of come for me. My mom grabbed it like
last minute before we went, because we went to the
yard like two or three times, but this time she
was like, we're.
Speaker 5 (29:17):
Definitely going to go to the hospital, Like, yeah, he's
a hospital. So she brought a teddy Bear with me.
Speaker 4 (29:23):
And it was kind of served as an ice picker,
like nurses would make jugs about like, oh does the
bear one IV, what's the bear's name?
Speaker 5 (29:28):
Or to get him stuff like that, And so.
Speaker 4 (29:30):
Obviously it was not fun in the hospital, you know,
those little moments kind of helped kind of break it up.
And then while we're there, we also had this like
WEE gaming console and the hospital. Yeah the gospel, yeah yeah,
we didn't bring it with us. Yeah, I'm not that
well for the care. And at one point we like
I wasn't playing with these. I was a little busy,
you know, me'd sick, and we gave it to the
(29:52):
people next to us, and the nurse was like, wow,
you gave that away, Like we don't have like more
of those, like not everyone gets one or whatever. So
when we got out of the hospital, like in the
next couple of days, we're like, how can we give
back because while we're there, we saw kids who were
going through much much worse cancer stuff, Like that's a
big reason we you know, like you said, put perspective
on celiac disease. So we just wanted to help them out.
So first we started with going back to the we
(30:16):
stuff like that. We wanted to raise money for that
so they could have more and hopefully more kids could
have it, because it really is a great.
Speaker 5 (30:21):
Distraction, I mean great distraction, very fine.
Speaker 4 (30:24):
So we did that, We raised money for that, and
then we talked to them about maybe doing something with
a bear drive because we wanted to instead of asking
people for money all the time, have something a little
more that you have more of an attachment to and buying.
Speaker 3 (30:37):
A bear and stuff like that, and something that kids could.
Speaker 4 (30:39):
Yeah, something they could actually and you could, Yeah, you
keep it after the hospital and there's your memory of
you know, I got through this whatever, maybe like the
bears for me. So we started that and since twenty
sixteen we've been able to collect over thirteen hundred bearers
and now thirty hundred bears and twenty thousand dollars to
the hospital. So it's it's all been crazy. We appreciate
(30:59):
the community support that has been and again it's so
crazy how it all came from, you know, the hospital,
being in the hospital and probably the stilly agency. So
everything happens for a reason, I guess, so's it's just
crazy that it all has led to this.
Speaker 1 (31:12):
That's so cool. It's it really is such an amazing thing.
Not everybody gives back, you know what I mean, not
everybody and not everybody can, but it's so cool that
you and in your young age like went home and
was like, how do we fix that situation? Like let's
make sure they have more of this, so every kid
there can have a fun thing to do and a
(31:33):
good distraction, such a sweet thing. You're special, Like you're
a special kid, Kateen, Like I mean, I know people
have told you that, but you really really are and
it's not normal, Like I will tell you, not every
kid thinks this way, you know, And that is I
think to a lot of credit to your mom too.
I mean, you know, you're right, you're doing the right thing.
(31:55):
You're raising a good one, you know.
Speaker 4 (31:57):
And and especially in the in the early years because
I was only like twelve when this happened. It's hard
for a twelve year old need to go email all
these businesses. Can't we connect all this? So it helps
that you know, you work in nonprofit and stuff like that,
so it definitely has my name on it. But I
always say, like as much credit as I get, she
should get as much because she goes the driving.
Speaker 5 (32:19):
She was the driving force, especially.
Speaker 4 (32:21):
In the earliers, because no, I wasn't able to do
all that, but she was. She was able to help
and then you know, you'd be able to use her contacts.
So she has to get it on the news and
stuff like that and spread awareness for it.
Speaker 5 (32:31):
So it's it's definitely as much as me. It's her
for sure. Yeah.
Speaker 3 (32:35):
Well, Katan's original idea was for us to buy the week.
I was like, well, no, what else?
Speaker 5 (32:43):
Give me deal. But it's a good idea too.
Speaker 3 (32:46):
I mean, it's doing something for the hospital and the kids,
but it is fun. We have a little party at
our house, a teddybird party every year. People bring him
and they're like, this is Charlie and he's from here
and he likes that. Like, g me, the backstory is
he there?
Speaker 2 (32:59):
Oh my god?
Speaker 1 (32:59):
It So let's talk about navigating this. You now, you
know you have Celiac's disease. You have to go you
you're gonna go out with family and you're gonna go
and do a big celebration. What does that look like
for you? And have you been able to find restaurants
that you can go that actually cater to your needs?
Speaker 5 (33:19):
Yeah? So well, we we don't really go out and
see now much.
Speaker 3 (33:22):
So that looks like a coke.
Speaker 5 (33:23):
Yeah, the family has gotta you know, deal with it.
But when we do, it looks something like what we
just had.
Speaker 4 (33:31):
Like a month ago, we found a restaurant out in
her Vine, which you know the story.
Speaker 5 (33:35):
Of our lives. We got to go out to Hervine. Yeah,
and that.
Speaker 4 (33:40):
Place was like the owner of it actually had Celiac
disease and it was crazy.
Speaker 5 (33:45):
And then when you're like, okay, we're definitely safe, we
can go there, do whatever.
Speaker 4 (33:48):
So in a place like that where they know it's
kind of like going to a normal restaurant, you just
have to clarify, like I have celiac stuff like that,
you know, is this that and that good? Just want
to double check, you know, and then you know they
bring it out and for that it's it's simple. But
for a place that maybe isn't exactly like a place
that we recently started going to His in and Out
(34:08):
because their fries are made in a separate fire, which
means I can eat it because there's no risk of
cross contamination.
Speaker 5 (34:14):
For there, it takes a little more. We kind of
had the more.
Speaker 4 (34:16):
Give the speech of Hey, I have allergy, and I
was actually pretty good with it. Like you can you
can even see on the board like it shows allergy,
and then we can literally hear them yell in the kitchen.
Speaker 5 (34:26):
Allergy separate things.
Speaker 4 (34:28):
So some places like cool yeah, where there is something
you saw have to tell the whole story, but you
can get through it. And then there's rare place like
the Irvine, where it's kind of like going to a
normal restaurant, which you really appreciate the name.
Speaker 1 (34:40):
Of that restaurant, what's the name?
Speaker 3 (34:41):
Give them give Malden's Fistro and Irvine And the woman
who owned it actually invented her own flower, gluten free flower.
And when they brought the bread out for us to try,
I mean I called four times before we went. I
just spoke to every person who even just brought us water.
Because you become paramount. Luckily most people ceely, I do
develop a certain anxiety, but like I've developed anxiety for kidd,
(35:04):
so he's fine.
Speaker 1 (35:05):
Yeah.
Speaker 3 (35:06):
So they brought the bread out and I tasted it,
and I was like, oh, there's no way they must
have a real bread one because blueperb bread is terrible.
And it was so good I was like, I can't
get this to my son. I really need someone else
to come out and make sure. They're like, we promise
you there's no gluten in our restaurant. It was amazing.
I was like, can I take some frozen home? Like
(35:26):
they liked time. We wanted to just like buy it all.
It was so good and they're so accommodating, a friendly
beau king have the other allergies like Vitorian stuff they
had to work with. So Malden's Bistro and Urbine is amazing.
There's another place in your Belinda called Oceans and Earth.
It's an award winning restaurant that is completely gluten free.
We haven't visited it yet because it's open like for
select hours. It's a little fancier, so we're looking forward
(35:48):
to trying that. But In and Out is a great
resource because they don't have gluten free funds, but they
will change their gloves. It's a dedicated space to make
you a hamburger like you know on lettuce and then
the fries. And the fries are especially important decay because
you know you're a teenager like ride, but you can
watch them do it to their detriment because if they
do it wrong because they're really putting their hands on stuff.
(36:15):
They're so busy. But I have to say and now
as an organization, really empowered their employees to understand the allergy,
not necessarily Celiac maybe, and to be really kind about
it and helpful. And we have never had a negative
experience with them.
Speaker 1 (36:30):
That is so cool. Oh, I love to hear that.
That's good to know about it about in and out.
I don't think i've I would have thought that that.
Speaker 3 (36:38):
I didn't either. I didn't even believe it at first.
Speaker 5 (36:40):
I wouldn't think at all because it's.
Speaker 4 (36:42):
Just one of those like fast food plays, especially everything's happening,
there's so much stuff.
Speaker 5 (36:46):
But it works.
Speaker 3 (36:48):
Yeah, Chipota too. Chipotle is really good because you could
get a bowl and they wash their hands, but the
chips are a little dicey there. There's a certain level
of you know, new Spoon, It gets tricky, but they're.
Speaker 1 (36:59):
Pretty good to Yeah. Do you have any fun gluten
free recipes? That's your favorite?
Speaker 3 (37:08):
I just really enjoy cooking. I can't enjoy cooking before
Cayden developed Celia Activies, but I did it and I
still do. I make a mean baked potato potatoes become
your best friend in all forms when you have Celiac divites,
they're really important. So I don't, but I will say that.
There is this website called Cats with a K gluten free,
(37:32):
and they sell the most amazing gluten free items, mostly
have to keep and frozen like pretzel bite an equivalent
of a tweeny donut there. But what's special about them
and we love because who knows what he's going to
become allergic to? Next is they're free of all the
top allergies. Or you can sort because some of them
might have like I guess people are allergic to eggs,
so some of them can have like an egg gllergy.
(37:53):
So there's a sorting feature. And for the most part
that food tastes it's really good.
Speaker 5 (37:58):
I saw the jump food too, so I really love it.
Speaker 3 (38:01):
Yeah, you could use junk right his plate three gluten
three pizza please DAYA for that because he has to
do dairy free now too. The dairy free thing really
through my cooking for a loop. That's been the hard
thing to get used to. And then every time you
introduce something new to say it's just dairy free butter,
I have to go buy caden. It's going to naturally
(38:21):
be gluten free, but I have to find out if
it's made in the facility where weed is processed, or
it's made on the line where we is processed. So
I have to call because it's not going to stay
on there. And then, just to be safe, he'll have it,
say on Monday, and then we'll have to wait three
days before he tries anything else new. He usually reacts
within twenty four hours, but we found three days as
the safest window because if he were to try something
(38:42):
else the next day and gets sick, I wouldn't know
what deposit. He's not an immediate reactor. He's more a
twelve to twenty four hour reactor.
Speaker 1 (38:48):
Oh so you don't even know, and like in that case,
sometimes you're guessing, yeah.
Speaker 4 (38:55):
That I'd also take that because I don't want to
ever be eating something.
Speaker 5 (38:59):
Yeah, I gotta go immediately.
Speaker 4 (39:01):
I'd rather just like like a patience game is hard
to play, but I'm much really have that that I'm with.
Speaker 5 (39:09):
Outside and then I get.
Speaker 1 (39:10):
Sick because yeah, I guess that's true that that my
friends in immediately.
Speaker 3 (39:14):
Understanding he'll get to your friends level. And yeah, but
right now we're hours.
Speaker 1 (39:19):
I hope not. Oh my goodness, well good, how can
everybody follow your journey? Tell everybody how they like? Instagram?
Speaker 3 (39:27):
Do?
Speaker 1 (39:27):
Where do you prefer?
Speaker 5 (39:28):
Yeah? So Instagram Caden Underscore Center has all the info.
It also is.
Speaker 4 (39:32):
Where you know, we promote the Bear Drive and my
sports prod asking and stuff and all that, so that
pretty much everything is there.
Speaker 1 (39:39):
Yeah cool, I love that. And you've met like every
celebrity too, so yes, every celebrity I know. And so
it's all on your install how you can see all
that too, and all of your your YouTube channel and
all that. Yeah, that's so cool. Okay, before we go,
I've loved I love talking to you guys all the time.
I'm know I'm going to talk to you soon. But
(40:00):
but what do you think the three big takeaways people
listening to this podcast today should leave with, I'm one.
Speaker 3 (40:09):
If that's okay. It's advocacy and whatever you're doing for
your parents or your child as a parent, you're doing enough.
It's okay if for a while something seems to be
the thing, you know you're going to figure it out.
But it's just advocacy. There is something to be said
for a parent's gut feeling that Trump's medical. Yeah, So
anytime you have that feeling, anytime you're like, no, I
(40:31):
know something wrong, I can't articulate it. I'm having trouble
figuring it out, and to not google it. I gave
so many of my own diagnosis sounds not helpful. So
I will say advocacy and if your child is experiencing
really weird symptoms that you cannot place, you're having trouble with.
It could just be fatigued, it could be migrained, it
(40:51):
could be stomach problems. If anyone in your family has Celiac,
then you should would probably be educated on it. But
if not, to ask, it's just a simple blood test,
it's really not a big deal. Well the initial diagnosis
is so I would recommend you know, if anything in
this conversation as sounders familiar to you, like my child
just seems sensitive to food, immediately call your doctor because
they're they're not going to tell you know what you ask.
Speaker 4 (41:13):
But yeah, I think I think on the flip side
of that, like, if you are a kid, like, don't
be afraid to speak up about certain symptoms you ever, Yeah, yeah,
as a parent, encourage your you know, kids to do
that because I'm not I don't know exactly love like
expressing I like, I have a high paints ones.
Speaker 5 (41:31):
And I also don't be in like because I don't
even want to go to the doctor. You know, it's
not what you're saying it.
Speaker 4 (41:34):
Yeah, I kind of contributed to the issue a little
bit because I didn't.
Speaker 5 (41:38):
But as I've.
Speaker 4 (41:39):
Gotten older and realized, oh, if I just you know,
speak up and say something, we're going to get to.
Speaker 5 (41:42):
The bottom of it. It's gotten better.
Speaker 4 (41:45):
So I would, you know, high advise any kid, even
if it's an uncomfortable subject because you know, CEI, heck's
not fun getting sick.
Speaker 5 (41:50):
It's not fun.
Speaker 4 (41:51):
Yeah, still to do it because that's how it eventually
leads and helps. Because it just kind of keep it
to yourself, it's not really going to get any better.
Speaker 3 (41:58):
Right, And I think the third one would be like
tolerance and kindness to others. I know, I you know,
not even gluten became like a trendy thing for a while,
so I might have rolled my eyes and like, okay,
you know, and it's school when you can't bring certain
things in the classroom because of the other kids. I mean,
I was always tolerant of that. I've never wanted to
have someone have like a peanut allergy or a situation
(42:19):
like that. But it's so for the most part, it's
been good for us. But there are some restaurants where
I feel like there's a side and I get it.
No one wants to do the extra work. So it's
so funny because once you're introduced to it, like my
parents and Peyton's dad sibling, you know, all of a sudden,
you're like, oh my gosh, I get it now, and
you're so compassionate to all the auto I means, where
before you might just be like, well, those.
Speaker 5 (42:39):
Things aren't my problems.
Speaker 4 (42:40):
Sometimes you just see them in like movies like the
Kid that has an allergy that's only you painted well,
but they talk about whute an allergies the movie Oh yeah.
Speaker 5 (42:47):
Yeah.
Speaker 4 (42:48):
So once you get like you become one of those people,
like you realize like, okay, this is you know, X,
Y and Z, and you navigated Yeah.
Speaker 1 (42:57):
Kindness. Yeah, that's definitely a patience kindness. I love that.
Oh you guys are so awesome, Thank you so much
for sharing with h is so so happy to have you.
You know, we're we're gosh. I think we're like nine
months into doing this podcast now, and it's been so informative.
I love learning a little more every day. I've learned
(43:18):
a lot today, So thank you again for sharing your story,
and hopefully we could come back and maybe we can
talk about your when you're doing the drive? Are you
when is that? What? Like month is that?
Speaker 5 (43:28):
Yeah? We started about November.
Speaker 4 (43:30):
Yeah, November, and then we have our usual like Teddy
Bear party thing and yeah, we deliver the bears right.
Speaker 3 (43:40):
Yeah, there's a lot of local businesses who participate. We
get somebody, Yeah, you don't have to come to our house.
Speaker 1 (43:47):
Wait are we driving your house? Okay? Good. I love
to hear that, and we will definitely talk more about
that in the in the coming months. Thank you guys,
have a wonderful day and and stay safe and I
will tell everybody to be patient if you hear something analogy.
Speaker 3 (44:08):
Thank you. M HM.
Hi, Welcome to another episode of Covering Your Health with
Evelyn ERIEVEZ presented by I EhP. Oh my gosh. I
can't believe that here we are yet again. We're on
Zoom today and for a very important reason we'll be
getting to very shortly. I can't believe it. Since late
last year, we have been talking about so many important topics,
(00:20):
engaging topics, and I've been learning so much about different
just different things, whether it be about healthcare, about different disorders,
and today is no different. We are going to have
a really fun and very candid conversation with a special duo,
(00:42):
a mother and a son named Jill and Caden Henderson.
They are good friends of mine and I'm so excited
that I get to have them on the podcast. They're
going to talk about navigating Cayden's Celiac disease. They're going
to talk about his diagnosis, what they've learned, and how
they are utilizing their social media to get the word
(01:02):
out and really, you know, to just engage with people
and maybe even a community that also is dealing with Celiac.
So what is Coeliac disease? According to Celiac Disease Foundation,
Coeliac disease is a serious autoimmune disease that occurs in
genetically predisposed people, where the ingestion of gluten leads to
(01:26):
damage in the small intestine. It's estimated that one in
one hundred people worldwide affected by the disease, but really
only thirty percent ever properly get diagnosed, which is just
what crazy, right, And there's no pharmaceutical treatments or cures
for celiac, So we're just scratching the surface. We're going
(01:46):
to dive into this topic and I can't wait to
get started.
Speaker 2 (01:51):
Welcome to Covering Your Health, a wellness podcast dedicated to
covering all areas of living a healthy and happy lifestyle,
from healthy hearts to understanding health plans and everything in between.
Each episode will provide you with a better understanding of
managing your health, preventative care, and staying on the right
path for your family's wellness journey. The Covering Your Health
(02:13):
podcast is presented by I e HP. Now your host
Evelina Revez.
Speaker 1 (02:20):
Well welcome, Jill and Caden. Hi, how are well?
Speaker 3 (02:24):
Thank you for having us.
Speaker 1 (02:26):
I'm so excited. So I have known both of you
guys for quite some time now. I'm so exciting to
get to have you on the podcast. What I will
say is, though it's kind of a bummer why we
have to have you on the podcast. It doesn't agree
need to take a disease for us to get together,
(02:46):
but it is nice to always see your faces. So
let's get started. Let's educate some people about well, really,
what's going on in your lives. Let's start first with
both of you, Jill and Cayden. Tell us about yourselves.
What do you went to, where are you from, where
do you live in the ie? All the things?
Speaker 4 (03:04):
God, Yeah, so we live in Redlands, California, and pretty
much a lot of my life is just sports and
stuff like that. I want to be sports broadcasts, want
to grow, so I do a lot of stuff involving that.
I also am in college about to ender my sophomore years.
Pretty much those two things are a lot of what
I do.
Speaker 3 (03:22):
Yeah, and I just spend all my time driving kat
in to really cool sports thing that he's older now
pretty soon he won't beat me. I work in the
nonprofit space, and so that was one of the reasons
that inspired Kayten to do a lot of work for
the hospital. The over twenty thousand dollars he's collected from
Homa Linda University Children's Hospital and the Teddy Bear Drive
(03:44):
and stuff he's done. So it's good, really neat to
be on that journey with him.
Speaker 1 (03:47):
You and I have a lot of that in common,
which is super fun because you've worked in that space
for a long time. I've volunteered in that space for
a long time, and it rubs off on the family
and that is so, so, so cool. So we'll talk
more about that, because I do want to talk a
lot about the Teddy Bear Drive and get into all
of that, but let's get into the nitty gritty of
why you're here. We want to talk about Celiac disease.
(04:11):
There's a lot unknown about it, Kayden. Can you tell
us a little bit about like your diagnosis, how much
of a relief it was when they finally figured out
what was going on with you? Tell us the whole story.
Speaker 4 (04:23):
Yeah, So I had a lot of stomach problems like
growing up, and especially kind of got at its worst
when I was in about like sixth grade, and they
had to be admitted into the hospital for a week
or so. And back then they took a lot of
blood tests with me and actually did it tess Celiac disease,
but it came back as like unknown or something exclusive. Yeah,
(04:44):
so they didn't know. So we go on a couple
of years something issues died down a little, but there's
still kind of lingering and stuff like that. And so eventually,
you know, we find ourselves back in the fact that
we're like, hey, these are my symptoms. You know, I've
been struggling with some of each stuff like that. They're okay,
let's have you do some blood work. So we did
did the blober again and the test came back up
or see that disease as positive. So and that was
(05:05):
two and about two and a half years ago. So
it was honestly kind of surprising because I got my
whole life and we'd already tested for it and we
didn't know I had it.
Speaker 5 (05:15):
So to find out and at least.
Speaker 4 (05:17):
Know that I knew what the issues were and it
was unknown, because it's scary one it's happening and you
don't know what it is or what it could be.
Speaker 5 (05:23):
It definitely was a relief.
Speaker 4 (05:25):
And then immediately once we got that diagnosis, we talked
to the doctor's course and dietitians and stuff like that
to set up my diet and that's kind of what
we've been doing these past couple of years.
Speaker 3 (05:35):
Wow, that was really interesting. What I didn't know about
Cilly activities Hill Caden's diagnosis is that you and I
Evelyn could have the gene right now and we just
don't know, and then there's a triggering event. It could
even be something. To my understand it could be something
like the pregnancy. For example, Caden's hospitalization, what was happening
with him at that time made him activated it, making
(05:55):
the test inconclusive, and that's why it still took us
a few years down the road to figure that out.
So it's really tricky because it's very normal to get
diagnosed later in life, but the longer you go having
it and continue the glutant is extremely dangerous for your body.
Speaker 1 (06:10):
Wow. I have a friend who actually kind of had
a similar situation, but hers wasn't triggeredun till she was
old or older till she was in her thirties, and
then that at that point it was an issue within
her like stomach lining and then her intestines and stuffs,
which is just so wild. You would think that they
would be able to test that so early or find
(06:31):
you that gene right, Like, okay, well do you have
that gene?
Speaker 5 (06:34):
Right?
Speaker 1 (06:34):
Are there therapies or any of that kind of stuff
where they can test you to see if you have
the gene.
Speaker 3 (06:39):
Testing is possible, there's no sort of treatment, there's no
sort of way to avoid it getting active. So I
was tested for celiac with a blood test, and so
is Katon's dad. They recommend when one family member gets diagnosed,
the immediate family immediately also go and get tested because
it's very dangerous if you have like silent celiac and
you're not presenting with the symptoms that came and had.
(07:00):
Everyone's case is kind of a little different, which is
what makes it.
Speaker 5 (07:02):
So hard to diagnose.
Speaker 3 (07:04):
So I could have had silent celiac and just been
like I feel tired all the time, well don't we all,
and not known that it was the glue that was
still doing something to my body. So it's it's hard,
but you can do the test. I didn't have it,
his dad didn't have it. It's not I think I
think you'd have to pay. It's like outside the scope
of what normal insurance says to find out if you
have the gene and I don't want to know if
(07:25):
it was my fault or not, so I will be
doing that. I just always it's your dad. It's your dad.
Speaker 1 (07:33):
That's hilarious. I'm not going to take the blame for
this one.
Speaker 3 (07:37):
That's it.
Speaker 1 (07:40):
Okay. So let's talk a little bit about those symptoms, right,
I know this week you actually had sort of like
I don't what do they what do they call it?
What do they call it? When you maybe had a
contamination or some sort of thing. What do you I mean.
Speaker 5 (07:56):
Gluten or yeah?
Speaker 1 (08:01):
Yeah, oh that's all I got glutened. Oh that sounds so.
Speaker 3 (08:07):
Cle you forget other people don't know. So I was
at a family event, like, oh you got glutens. I
don't just walk.
Speaker 5 (08:12):
Away sick and it's just easier.
Speaker 1 (08:14):
Yeah. What what does it feel like to get glutened?
When you're in this state?
Speaker 4 (08:21):
It's basically it's basically the stomach flu, but like way worse.
Like obviously your stomach hurts and you feel you feel
really tired. Some people I know, like are on the
verge of like passing out sometimes when they when they
have and stuff like that. So it really just kind
of forces you to just stay inside and just you know,
have whatever needs to happen for you to get better.
(08:44):
But yeah, it really just kind of stops your day
and you got to live your life around it.
Speaker 5 (08:49):
When you do get gluten.
Speaker 3 (08:50):
And unlike the stomach flu, there's not you don't really
want to suppress the symptoms. You have to kind of
let your body do whatever it has to do to
get through it. I know some people celiactic like activating charcoal.
We haven't tried that. There's a lot of sort of
controversy once you're in that community of what's appropriate to
do with Cadence. Just rest stays super hydrated like a
brat kind of diet that the brat diet involves bread
(09:13):
and he can't have that as much as we can
and try to just you know, wade through it. But
it's interesting it can be so different. When he first
went gluten free, he had an attack after a basketball
game which was such severe pain in his stomach, and
he has a high threshold for pain. I thought he
was gonna have to take him with a doctor. Then
there was another day when he did pass out and
that night he woke up nauseous and it was almost
(09:35):
like and I could say with confidence he was not drinking.
It's almost like he was drunk because he was so disoriented,
and people get brain fog and some people are like, oh,
I get a migraine. So it's it really runs the gamut.
But the longer you spend on a gluten free diet
when a mistake is made, the worst the reaction is
because your body is so starting to heal, So when
that gluten comes in, your body just absolutely tries to
(09:57):
reject it and like fight against you.
Speaker 1 (09:58):
Basically, Oh my gosh. It's like almost like getting sick
when you build up antibodies. Right like after COVID, nobody
had been around anybody, and then all of a sudden,
we all.
Speaker 5 (10:08):
Go back outside, all sick.
Speaker 1 (10:09):
Everybody is just floored. We're all think again exactly. Oh
oh my goodness. Okay, I mean that sounds horrible, and
I'm so sorry that you've had to even go through that.
And I know you had a little bit of an
episode this week too, and I like, all I kept
thinking was, let's push farther, Let's let's let him have
all of the time that he needs. Oh.
Speaker 3 (10:29):
I think that's the most heartbreaking part is it's hard
to watch your kids suffer or be sick, but it's
the life social opportunity impact, Like we're so excited to
come in studio and get to see you and ye
little things like that we have and we try to
be so careful when we have something big coming. But
you know, a stuff happens, and so sometimes it impacts
of life in a way that kind of breaks my heart.
(10:50):
But we just do the best we can. We get
better every year, we get a little smarter.
Speaker 1 (10:53):
Yeah, well, we're going to talk to you more about
like how you've had to make adjustments in like everything
in just a few I wanted to talk a little
bit about how you've been utilizing your social media. So
you have been on your platform sharing your stories. You
guys are both both very public. I've known you both
to be very public for a very long time, even Caden,
(11:13):
when you were very very young. You've been very public,
which has always been so fun to watch you, you know,
grow up. I feel like I've watched you grow up.
So tell me, like, why do you feel it's necessary
to share this particular story, because it's always been something
else that I've always followed from you both. You know,
different types of stories and now it's this journey.
Speaker 5 (11:35):
Yeah.
Speaker 4 (11:35):
Well, I think what's interesting is, well, first of all,
when I found out i'd see like disease, I didn't
know what it was, you.
Speaker 5 (11:40):
Know, like you had to get the big born the
papers that explained it to us.
Speaker 4 (11:43):
So immediately, you know, what we did is we went
and found other people who talk about like disease. People
have whole Instagram accounts where they suggest food and you know,
they kind of surround that. So learning that it wasn't
that well known that there are other people doing it,
that makes us want to do it because I'm we
know the pain of it, we know it's not fun.
So if we're able to get people to spread awareness
(12:05):
about it, so that way, hey, like if you know
there's one person's like, oh I kind of have these symptoms,
I kind of experienced this, if that can you know,
help them and maybe they can help ease the pain
and not go through it and get diagnosed and that
it helps. So just to spread awareness about something because
it's really not like as talked about as you know,
other diseases, just because it's not as common.
Speaker 5 (12:22):
Yeah, so it's all about just spreading awareness.
Speaker 3 (12:24):
Yeah, it's just it's so frustrating to go through life
with Celiac and not be able to find restaurants that
are fluten free, or people would tell me it wasn't real.
When I told them Kade's diagnosis, They're like, well, you
seem a little extreme with the whole cross contamination thing,
and I'm like, yeah, I don't want them to die early,
you know, sorry, So the right the fight you have
to fight against even sometimes like family members and friends
(12:46):
being like, no, guys, this is really You can't just
have a little You can't just come over and use
your puts in pants. You do seem crazy. When they
told me what I had to do, I was like,
that seems extreme, guys. And then once I saw it
in practice and saw the difference of tiny mistake make
so I thought, if you talk about it more, you
educate people on it more, would just make anyone, including
our lives easier for someone with celiac. But it's just
(13:09):
hard to find options of places to eat out, and
there are times we all prefer to, you know, home
cooker food. That's great, but you're on the go sometimes
and you need a safe place where you can eat,
or you want to go on vacation or travel, and
we feel so limited. So the more you talk about it,
the more I feel like, you know, so, if you're
listening in lin Empire, we need a gluten free restaurant.
Speaker 4 (13:27):
Yeah, I think. I think especially too. A lot of
times it gets confused with just having like a gluten
free diet or just being gluten free, and there's those
stereotype with those people that are gluten free. It's like, oh,
you can done everything, you don't need diditionally eat that's
too much? And then there's Celiac disease, which is you
have to do it, You're not choosing to do it
to be healthy or whatever.
Speaker 5 (13:43):
True.
Speaker 4 (13:43):
So I think that's something that also people kind of
get mixed together. And that's a big reason why I
think restaurants too, like darns many because some restaurants have
gluten free choices, but they're not Celiac friendly.
Speaker 3 (13:54):
Animation.
Speaker 5 (13:55):
Yeah, I should say so.
Speaker 4 (13:58):
A lot of it is just like blurred and trying
to separate what our gluten uh like gluten died is
natural Celiac diet right of differences and sickness and stuff
like that.
Speaker 1 (14:07):
No, it's so funny. I went to a restaurant and
I asked, you know, like, hey, do you have like
a gluten free pizza or something like that? And they
gave me the like weirdest look, and I thought, how terrible,
Like I'm just I know I'm sensitive to gluten, but
I don't have celiac, So I know, like what that
has to feel horrible when you're going somewhere and you're like, hey,
(14:30):
I really can't have said like I just know I
can't have.
Speaker 3 (14:34):
That, Evelyn. The amount of money I spent in tipping people,
because first of all, if you this gluten free is
a substantial price different it's going to be more expensive
in a restaurant, in a grocery store. But then when
we go, like say, for example, to go Chipotle, I
would say, hi, my son has It's just easier to
say gluten allergy than try to explain the whole thing.
So my my son has to likelutinega. I need you
(14:55):
to take your gloves off, wash your hands, put new
gloves on. Be the only person who we have a
the food, put the lid on, and there's a line
of people behind you. It's not a comfortable feeling. And
I want Kyten to feel empowered and comfortable but it's
also hard to just walk up and not apologize to
the person, apologize to everyone behind.
Speaker 5 (15:13):
You.
Speaker 3 (15:13):
Feel like you're walking this fine line. We've never had
a native experience, honestly, but I'm just like waiting for
a tab.
Speaker 1 (15:21):
He's funny.
Speaker 3 (15:22):
Thank you.
Speaker 1 (15:23):
I will give you all the money. Please make this
easy on me. So okay, I mean, I think we
kind of covered a little bit of this, But what
are some more misconceptions you've learned about Celiac that maybe
even surprised you.
Speaker 3 (15:37):
That's fake. I mean that that's the big one, right,
that is fake. As soon as Kan was diagnosed, the
first piece of advice that the doctor gave me was
one to join support groups immediately because it is so
different for every single person. Yeah's share of informations than beautiful.
But he said you have to get rid of all
your pots and hands because there's scratches in most pots
(15:58):
and pans that you've had over the years and the
gluten can live inside them, which really made me question
how clean our dishes are. He's that crazy. Now, I've
heard some people who are not experts, who are not doctors,
sort of social media influencer in the Sealac spacey. Oh,
you don't need to do that. But you can't throw
someone gluten free and use the pots and pans and
they're still getting sick. You won't know if you're doing
(16:19):
it right. You won't know if you can't make those risks.
I would say the misconception is people don't understand how
expensive celiactive. The food is so expensive. And the other
thing that surprised me, which really blew my mind. You
are like five times more likely to develop a second
autoimmune disorder. You are more likely to develop more food allergies.
(16:40):
In Caden's case, he now can't have dairy or oats,
So we're slowly marking off all the food in the world.
Speaker 1 (16:46):
Oh no, we can you eat fruit?
Speaker 5 (16:50):
Yeah, it's quicker to da any things I can than
that I can't.
Speaker 1 (16:53):
Yeah, like all the fruit, all the veggies, all the fruit.
That's it right.
Speaker 3 (16:57):
You can't see him, but he's a skinny guy that
you understand.
Speaker 1 (17:02):
Oh my gosh, that sounds horrible, Like I don't even
know how else to say that. That sounds horrible, but
it is.
Speaker 3 (17:10):
He's a trouper, but it's rough.
Speaker 1 (17:11):
I was just gonna say, you are so positive, Okayden
because you're like laughing about it and you're like, eh,
well this is okay.
Speaker 4 (17:18):
I mean yeah, I mean like the first time, like oh,
when I got gluten, like that was kind of scary,
so I didn't know what it was gonna be. But
now like obviously I don't want to get's like it's
not fun. I wouldn't choose so and I'm like, Okay,
I know this is going to happen. Is it frustrating?
Is it annoying what I got to be doing something else? Yes,
but I know three or four days, like I'll be okay,
I can move on with my day. I survived it.
You know how many more times I can do it?
(17:38):
So eventually you kind of just get used to it.
And I didn't really have trouble accepting that I had it,
you know, like yeah I missed some food occasionally, but
I'm just like, you just gotta go with it. You
can't have it stop your life because I know, letting
you win at some point. So I think eventually just
kind of get used to it and just kind of
and it's just.
Speaker 3 (17:53):
Nice to have answers. Well I had an answer, because
the other thing is, you know what affects your teeth.
It affects like the color of your teeth and if
they're healthy or not. So when Katan was little and
growing up, I would give a like I was doing
I feel like I was doing something wrong. And I
knew that Kayden is eating healthy. I knew he brushed
his teeth. But there are all these things that now
make sense that didn't before. So having answers, even if
(18:14):
you don't like them, is better than not having any.
But it's all about perspective. You know, people will have
cancer and are terminally ill, and this is not fun.
And if Kan didn't go gluten free, he would be
way more likely to get cancer. We understand that, but
there's illnesses out there, especially when we're in the hospital.
We saw where people are in so much worse shape
and are really suffering. So do I love it?
Speaker 5 (18:35):
No?
Speaker 3 (18:35):
Am. I incredibly grateful every day that I get up
that it's an autoimmune thing that we can control and
that he's not it's not like threatening. That's all the matters.
So there's days we get down about it, but at
the end of the day you have to put it
in perspective. Kayden's all grow all healthy and you know,
around so that's all I care.
Speaker 1 (18:50):
About, No, thank God, of course. Yeah, And that's good perspective.
Is everything like it really really is. I think about
days I have at work sometimes where I'm like, I'm
so exhausted, my brain is fried, but I love what
I do. It's okay, Like I could be doing something
way worse I could be, you know, And that's a
way different perspective on it. But it's not a just
yea yeah, those kind of things. You have to have
(19:12):
a positive look on things to make to get it,
to get through, to really get through anything. So with Celia,
explain to me, because I know you guys have probably
learned a whole lot now through the through going through this.
What is it exactly? So it's we know it's a
gluten allergy. It affects your intestine though, right, so what
is it that could potentially get to a cancer situation?
Speaker 3 (19:36):
What?
Speaker 1 (19:36):
What is something eating at it? What is happening?
Speaker 3 (19:41):
So it's technically an autoimmune disorder and not at all
an allergy. Came to an allergy test and he's not
allergic to gluten, which just made that what yeah, now
the slang from when we go out to eat gluten
allergy because it's just too much. And the cross contamination.
You just say that it was because it's so easy,
you know, touch one thing of blue, touch another, He's
going to get sick. So I don't understand the cancer connection.
(20:05):
I don't know if you knew either.
Speaker 2 (20:06):
No, not.
Speaker 3 (20:08):
That's just one of the first things the doctors told
us that. I know, Came's very mature and was going
to do the diet anyway, but was very like, oh,
we have to take this serious. But I do know
what happens when you eat the gluten and you have it.
It's the v lead and like the whining of your
intestine looked like fingers, and Caden's was essentially like blunted
and had very little like bumps in between, and then
(20:31):
you can't absorb nutrients. And so Caden's was, I mean,
his markers were so high and he in theories were like, hey,
Cave's just a kid's stomach problems.
Speaker 5 (20:39):
For a while.
Speaker 3 (20:39):
It is just where I was going with until it
got worse because I had seen doctors, he'd been to
the hospital. Like, I wasn't getting anywhere other than he
has a sensitive stomach.
Speaker 5 (20:46):
I'm a bad cook.
Speaker 3 (20:47):
I don't know, so at Caden's point. I mean, there
was no we didn't see there's no like specific test,
but it was obvious by the color of his skin.
I mean his his skin like actually improved itself. It's
just your body almost starts to attack itself, and so
first it starts in the vlei and it's your stomach,
and then in Kayten's case, it went to teeth, it
(21:08):
went to how much energy he had. And I loved Kayten,
He's always been delightful, but he is in such a
better mood since she went to the concrete. But if
you he thought it was normal to feel that way.
He didn't know any different, and he thought I was
walking around with my stomach feeling like that all the time,
where I was feeling nothing. So it's just really interesting
the science of it, how that one little ingredient can
basically turn your whole body against yourself.
Speaker 1 (21:31):
So I think, what I so because I have only
because I have a friend who actually has celiac that
I even know anything about it. When I was so like, wait,
what do you have? And her stomach would bloat, and
I mean like literally I watched her have, don't I'll
tell a silly story we went to a waffle house, okay,
and she had already been diagnosed okay, but she really
(21:54):
wanted to have what we were having. She didn't have
anything gluten in it, but that is like king contamination
waffle house. You watched them the food, so she so
she like made you know, she said, okay, well I
have an allergy. And they're like, okay, we're in the South.
(22:17):
I'm sure, you know, They're like sure. She gets, she eats,
She's so happy with her food. We start to leave
and instantly, I mean instantly, she was sick and it
was like get her back to the hotel. We were
at a conference. I we had like run her across
the street, get into a restroom, and then get her
(22:38):
to her room. And oh my god. It was horrible
and I couldn't help. But like we kind of laughed
because we were like, you you knew where you were,
you knew that. I mean we joke about it now
too with her, like remember that one time you had
to have waffle house And she just laughs, she goes,
I don't know why I did that, Like I literally
(23:00):
it just looked good, it smelt good. I had to
have it.
Speaker 3 (23:02):
I get it Cayden has amazing will power, but I
will last two seconds. I'd like this cookie was good.
Speaker 1 (23:09):
How do you do it? You are superman like for real?
That is like crazy. So she was telling me about
the intestinal you know, with I think, what did you
call it? The V what did you the VLEI? So
she was telling me hers was gone her and she's
in her thirty so well at that time, in her
thirty so she was like, when she was diagnosed, it
(23:31):
was already at that point where it was completely gone
and it was eating into her actual intestine. And so
that was when they were That's when they told her,
this is when you get cancer, because what ends up
happening is you get intestinal cancer because you're it's just
it's just constantly being eaten at, and then the antibodies
(23:52):
and like all these other little things that happened. And
I'm not a doctor, so I don't want to go
say anything else further. Yeah, I'm like, okay, you get
the point. But anyway, when it gets to that point,
that's when you get to a super duper risky place.
That's why you have to find this out as early
as humanly possible. And I know that there's many doctors
out there that don't even want to test you for it.
(24:13):
You know, you could be going in with stomach problems
and stomach problems and stomach and they're just kind of like, no,
it's not that, No, it's not that. And I think
that's another thing. You have to find the right doctor,
and you have to find a doctor that will advocate
for you. How were you How was that experience for you?
Speaker 3 (24:30):
Terrible?
Speaker 5 (24:30):
Yeah, that was it was. Yeah.
Speaker 4 (24:32):
So leading up to that first or one of the
first when I was in the hospital, Yeah, obviously the
stomach issues were there and we got like so many
different diagnoses.
Speaker 5 (24:44):
Was like stomach.
Speaker 4 (24:48):
Just like you know, do it better that, Yeah, basic stuff,
and that was.
Speaker 5 (24:53):
Yeah. We had like a couple of doctors that we
had once to the emergency room a couple of times.
It was never brought up.
Speaker 4 (24:58):
It wasn't until I don't even think it was brought
up in the hospital and they just so happened to
test they take. Yeah, but I wasn't until like probably
the I don't know, like for their big overall doctors
that doctor. Yeah, and they finally got to it. But
it's just crazy, and I think that just shows how
you know whatever, they don'tant a test. But also it's
just not like the first thing people think of, which
(25:19):
is why it can last so long. And you know, luckily,
you know, we got it at my age, which I
was still you know, pretty young. Yeah, obviously it would
have been nice to get it when I was in
sixth grades that I was school. Sure, but at least eventually
we got and we didn't get to where it was doing,
like it was obviously very damage it was doing like
like yeah, like cancer level.
Speaker 3 (25:36):
I mean, it just really comes down to I never
had an experience like that before as a parent, any
parent who's listening or watching advocating for your child, because
there was a point where I was in the emergency
room like essentially screaming, and this was a different situation.
You know, it is a tie to the celiac, probably,
but we kept going to the doctor. We went so
many times I won't name the healthcare provider that before
(25:58):
I even I said to my parents aftergot to the hospital,
I'm gonna write a letter and be like, I want
a refund for all the time we went to the
same urgent here twice in one weekend. One time they
refunded my my of brick and said the letter I
want to write that letter books because gross misdiagnosis situation.
So shortly after that we changed to a different pediatrician
(26:21):
and it was during COVID, so it was a little hard.
So I was like, hey, Cayden's experiencing this, try this,
because they weren't letting us go into the doctor's office
if there wasn't anything against this particular doctor. And she
was the first one to say, you know, if you
tested for celiac and I was like, no, I don't
know what that is. And she goes, well, it says
here you did at the hospital and it was inconclusive,
and so there's another you know, maybe someone should that
(26:43):
I'm not.
Speaker 1 (26:46):
Let's figure that out. Yeah, means let's try again.
Speaker 3 (26:50):
Right, So I just feel like I felt so I
love Cayden so much, and I worked so hard to
be a really diligent, caring parent, and you know, I
like to go to McDonalds. We don't not have fun
with food. Well we don't have any fun with food now,
but we too. And so I just felt so bad
for so long and like I wasn't doing enough. And
(27:11):
so I would say, if your kid has anything weird
going on with them, Like you write it all down.
There are things that now I realized I could have
said that we're connected, that might have made it trigger
in someone's head. Because every illness you're sharing. No, it's
to advocate. It's okay to make appointments. It's okay to
say no, I need more, because that's what finally got us,
you know, a new doctor and being really forthcoming with her,
(27:33):
really oversharing and I mean oversharing, that's.
Speaker 1 (27:36):
What got us to the doc to you literally have to.
And I think that's where honesty is the best policy.
Right it's with your doctor. Don't don't go to the
doctor and be like.
Speaker 5 (27:46):
I need.
Speaker 3 (27:49):
No.
Speaker 1 (27:49):
Look, it is volatile. What is happening in my stuff,
It is volatile what is happening in the restroom right now?
Like you have to tell them the truth. So I
feel like this podcast name, like I think almost every
episode that we have done of the Covering your Health
podcast has been about advocating for yourself. So I feel
(28:11):
like I'm at some point I have to change the
whole name because Advocate for Yourself podcast, Like it's because
it's true or it's it's take somebody with you who
will advocate for you if you right. Yeah, and in
this case, you had your mom, which is like, thank god, right,
and thank god your mom was listening to you and
(28:32):
understood and seen this process and all of that. So
let's talk about lom Molinda University Children's Hospital, all that
really great work that you've been doing. I have watched
you do a lot of this work. I've supported it
on the radio. I've been so excited about talking about
it every time you do this. Let's talk about the
impact that the hospital had on you and your diagnosis,
(28:53):
and then why you felt like it was the right
thing to do to support the kids there too.
Speaker 4 (28:59):
Yeah, so I said earlier, I was sent to hospital
for about three or four days for a summit issue
which we now know may have been linked silia and
all that, so it all be next. And when I
was there, I had a Teddy Bear with me to
kind of come for me. My mom grabbed it like
last minute before we went, because we went to the
yard like two or three times, but this time she
was like, we're.
Speaker 5 (29:17):
Definitely going to go to the hospital, Like, yeah, he's
a hospital. So she brought a teddy Bear with me.
Speaker 4 (29:23):
And it was kind of served as an ice picker,
like nurses would make jugs about like, oh does the
bear one IV, what's the bear's name?
Speaker 5 (29:28):
Or to get him stuff like that, And so.
Speaker 4 (29:30):
Obviously it was not fun in the hospital, you know,
those little moments kind of helped kind of break it up.
And then while we're there, we also had this like
WEE gaming console and the hospital. Yeah the gospel, yeah yeah,
we didn't bring it with us. Yeah, I'm not that
well for the care. And at one point we like
I wasn't playing with these. I was a little busy,
you know, me'd sick, and we gave it to the
(29:52):
people next to us, and the nurse was like, wow,
you gave that away, Like we don't have like more
of those, like not everyone gets one or whatever. So
when we got out of the hospital, like in the
next couple of days, we're like, how can we give
back because while we're there, we saw kids who were
going through much much worse cancer stuff, Like that's a
big reason we you know, like you said, put perspective
on celiac disease. So we just wanted to help them out.
So first we started with going back to the we
(30:16):
stuff like that. We wanted to raise money for that
so they could have more and hopefully more kids could
have it, because it really is a great.
Speaker 5 (30:21):
Distraction, I mean great distraction, very fine.
Speaker 4 (30:24):
So we did that, We raised money for that, and
then we talked to them about maybe doing something with
a bear drive because we wanted to instead of asking
people for money all the time, have something a little
more that you have more of an attachment to and buying.
Speaker 3 (30:37):
A bear and stuff like that, and something that kids could.
Speaker 4 (30:39):
Yeah, something they could actually and you could, Yeah, you
keep it after the hospital and there's your memory of
you know, I got through this whatever, maybe like the
bears for me. So we started that and since twenty
sixteen we've been able to collect over thirteen hundred bearers
and now thirty hundred bears and twenty thousand dollars to
the hospital. So it's it's all been crazy. We appreciate
(30:59):
the community support that has been and again it's so
crazy how it all came from, you know, the hospital,
being in the hospital and probably the stilly agency. So
everything happens for a reason, I guess, so's it's just
crazy that it all has led to this.
Speaker 1 (31:12):
That's so cool. It's it really is such an amazing thing.
Not everybody gives back, you know what I mean, not
everybody and not everybody can, but it's so cool that
you and in your young age like went home and
was like, how do we fix that situation? Like let's
make sure they have more of this, so every kid
there can have a fun thing to do and a
(31:33):
good distraction, such a sweet thing. You're special, Like you're
a special kid, Kateen, Like I mean, I know people
have told you that, but you really really are and
it's not normal, Like I will tell you, not every
kid thinks this way, you know, And that is I
think to a lot of credit to your mom too.
I mean, you know, you're right, you're doing the right thing.
(31:55):
You're raising a good one, you know.
Speaker 4 (31:57):
And and especially in the in the early years because
I was only like twelve when this happened. It's hard
for a twelve year old need to go email all
these businesses. Can't we connect all this? So it helps
that you know, you work in nonprofit and stuff like that,
so it definitely has my name on it. But I
always say, like as much credit as I get, she
should get as much because she goes the driving.
Speaker 5 (32:19):
She was the driving force, especially.
Speaker 4 (32:21):
In the earliers, because no, I wasn't able to do
all that, but she was. She was able to help
and then you know, you'd be able to use her contacts.
So she has to get it on the news and
stuff like that and spread awareness for it.
Speaker 5 (32:31):
So it's it's definitely as much as me. It's her
for sure. Yeah.
Speaker 3 (32:35):
Well, Katan's original idea was for us to buy the week.
I was like, well, no, what else?
Speaker 5 (32:43):
Give me deal. But it's a good idea too.
Speaker 3 (32:46):
I mean, it's doing something for the hospital and the kids,
but it is fun. We have a little party at
our house, a teddybird party every year. People bring him
and they're like, this is Charlie and he's from here
and he likes that. Like, g me, the backstory is
he there?
Speaker 2 (32:59):
Oh my god?
Speaker 1 (32:59):
It So let's talk about navigating this. You now, you
know you have Celiac's disease. You have to go you
you're gonna go out with family and you're gonna go
and do a big celebration. What does that look like
for you? And have you been able to find restaurants
that you can go that actually cater to your needs?
Speaker 5 (33:19):
Yeah? So well, we we don't really go out and
see now much.
Speaker 3 (33:22):
So that looks like a coke.
Speaker 5 (33:23):
Yeah, the family has gotta you know, deal with it.
But when we do, it looks something like what we
just had.
Speaker 4 (33:31):
Like a month ago, we found a restaurant out in
her Vine, which you know the story.
Speaker 5 (33:35):
Of our lives. We got to go out to Hervine. Yeah,
and that.
Speaker 4 (33:40):
Place was like the owner of it actually had Celiac
disease and it was crazy.
Speaker 5 (33:45):
And then when you're like, okay, we're definitely safe, we
can go there, do whatever.
Speaker 4 (33:48):
So in a place like that where they know it's
kind of like going to a normal restaurant, you just
have to clarify, like I have celiac stuff like that,
you know, is this that and that good? Just want
to double check, you know, and then you know they
bring it out and for that it's it's simple. But
for a place that maybe isn't exactly like a place
that we recently started going to His in and Out
(34:08):
because their fries are made in a separate fire, which
means I can eat it because there's no risk of
cross contamination.
Speaker 5 (34:14):
For there, it takes a little more. We kind of
had the more.
Speaker 4 (34:16):
Give the speech of Hey, I have allergy, and I
was actually pretty good with it. Like you can you
can even see on the board like it shows allergy,
and then we can literally hear them yell in the kitchen.
Speaker 5 (34:26):
Allergy separate things.
Speaker 4 (34:28):
So some places like cool yeah, where there is something
you saw have to tell the whole story, but you
can get through it. And then there's rare place like
the Irvine, where it's kind of like going to a
normal restaurant, which you really appreciate the name.
Speaker 1 (34:40):
Of that restaurant, what's the name?
Speaker 3 (34:41):
Give them give Malden's Fistro and Irvine And the woman
who owned it actually invented her own flower, gluten free flower.
And when they brought the bread out for us to try,
I mean I called four times before we went. I
just spoke to every person who even just brought us water.
Because you become paramount. Luckily most people ceely, I do
develop a certain anxiety, but like I've developed anxiety for kidd,
(35:04):
so he's fine.
Speaker 1 (35:05):
Yeah.
Speaker 3 (35:06):
So they brought the bread out and I tasted it,
and I was like, oh, there's no way they must
have a real bread one because blueperb bread is terrible.
And it was so good I was like, I can't
get this to my son. I really need someone else
to come out and make sure. They're like, we promise
you there's no gluten in our restaurant. It was amazing.
I was like, can I take some frozen home? Like
(35:26):
they liked time. We wanted to just like buy it all.
It was so good and they're so accommodating, a friendly
beau king have the other allergies like Vitorian stuff they
had to work with. So Malden's Bistro and Urbine is amazing.
There's another place in your Belinda called Oceans and Earth.
It's an award winning restaurant that is completely gluten free.
We haven't visited it yet because it's open like for
select hours. It's a little fancier, so we're looking forward
(35:48):
to trying that. But In and Out is a great
resource because they don't have gluten free funds, but they
will change their gloves. It's a dedicated space to make
you a hamburger like you know on lettuce and then
the fries. And the fries are especially important decay because
you know you're a teenager like ride, but you can
watch them do it to their detriment because if they
do it wrong because they're really putting their hands on stuff.
(36:15):
They're so busy. But I have to say and now
as an organization, really empowered their employees to understand the allergy,
not necessarily Celiac maybe, and to be really kind about
it and helpful. And we have never had a negative
experience with them.
Speaker 1 (36:30):
That is so cool. Oh, I love to hear that.
That's good to know about it about in and out.
I don't think i've I would have thought that that.
Speaker 3 (36:38):
I didn't either. I didn't even believe it at first.
Speaker 5 (36:40):
I wouldn't think at all because it's.
Speaker 4 (36:42):
Just one of those like fast food plays, especially everything's happening,
there's so much stuff.
Speaker 5 (36:46):
But it works.
Speaker 3 (36:48):
Yeah, Chipota too. Chipotle is really good because you could
get a bowl and they wash their hands, but the
chips are a little dicey there. There's a certain level
of you know, new Spoon, It gets tricky, but they're.
Speaker 1 (36:59):
Pretty good to Yeah. Do you have any fun gluten
free recipes? That's your favorite?
Speaker 3 (37:08):
I just really enjoy cooking. I can't enjoy cooking before
Cayden developed Celia Activies, but I did it and I
still do. I make a mean baked potato potatoes become
your best friend in all forms when you have Celiac divites,
they're really important. So I don't, but I will say that.
There is this website called Cats with a K gluten free,
(37:32):
and they sell the most amazing gluten free items, mostly
have to keep and frozen like pretzel bite an equivalent
of a tweeny donut there. But what's special about them
and we love because who knows what he's going to
become allergic to? Next is they're free of all the
top allergies. Or you can sort because some of them
might have like I guess people are allergic to eggs,
so some of them can have like an egg gllergy.
(37:53):
So there's a sorting feature. And for the most part
that food tastes it's really good.
Speaker 5 (37:58):
I saw the jump food too, so I really love it.
Speaker 3 (38:01):
Yeah, you could use junk right his plate three gluten
three pizza please DAYA for that because he has to
do dairy free now too. The dairy free thing really
through my cooking for a loop. That's been the hard
thing to get used to. And then every time you
introduce something new to say it's just dairy free butter,
I have to go buy caden. It's going to naturally
(38:21):
be gluten free, but I have to find out if
it's made in the facility where weed is processed, or
it's made on the line where we is processed. So
I have to call because it's not going to stay
on there. And then, just to be safe, he'll have it,
say on Monday, and then we'll have to wait three
days before he tries anything else new. He usually reacts
within twenty four hours, but we found three days as
the safest window because if he were to try something
(38:42):
else the next day and gets sick, I wouldn't know
what deposit. He's not an immediate reactor. He's more a
twelve to twenty four hour reactor.
Speaker 1 (38:48):
Oh so you don't even know, and like in that case,
sometimes you're guessing, yeah.
Speaker 4 (38:55):
That I'd also take that because I don't want to
ever be eating something.
Speaker 5 (38:59):
Yeah, I gotta go immediately.
Speaker 4 (39:01):
I'd rather just like like a patience game is hard
to play, but I'm much really have that that I'm with.
Speaker 5 (39:09):
Outside and then I get.
Speaker 1 (39:10):
Sick because yeah, I guess that's true that that my
friends in immediately.
Speaker 3 (39:14):
Understanding he'll get to your friends level. And yeah, but
right now we're hours.
Speaker 1 (39:19):
I hope not. Oh my goodness, well good, how can
everybody follow your journey? Tell everybody how they like? Instagram?
Speaker 3 (39:27):
Do?
Speaker 1 (39:27):
Where do you prefer?
Speaker 5 (39:28):
Yeah? So Instagram Caden Underscore Center has all the info.
It also is.
Speaker 4 (39:32):
Where you know, we promote the Bear Drive and my
sports prod asking and stuff and all that, so that
pretty much everything is there.
Speaker 1 (39:39):
Yeah cool, I love that. And you've met like every
celebrity too, so yes, every celebrity I know. And so
it's all on your install how you can see all
that too, and all of your your YouTube channel and
all that. Yeah, that's so cool. Okay, before we go,
I've loved I love talking to you guys all the time.
I'm know I'm going to talk to you soon. But
(40:00):
but what do you think the three big takeaways people
listening to this podcast today should leave with, I'm one.
Speaker 3 (40:09):
If that's okay. It's advocacy and whatever you're doing for
your parents or your child as a parent, you're doing enough.
It's okay if for a while something seems to be
the thing, you know you're going to figure it out.
But it's just advocacy. There is something to be said
for a parent's gut feeling that Trump's medical. Yeah, So
anytime you have that feeling, anytime you're like, no, I
(40:31):
know something wrong, I can't articulate it. I'm having trouble
figuring it out, and to not google it. I gave
so many of my own diagnosis sounds not helpful. So
I will say advocacy and if your child is experiencing
really weird symptoms that you cannot place, you're having trouble with.
It could just be fatigued, it could be migrained, it
(40:51):
could be stomach problems. If anyone in your family has Celiac,
then you should would probably be educated on it. But
if not, to ask, it's just a simple blood test,
it's really not a big deal. Well the initial diagnosis
is so I would recommend you know, if anything in
this conversation as sounders familiar to you, like my child
just seems sensitive to food, immediately call your doctor because
they're they're not going to tell you know what you ask.
Speaker 4 (41:13):
But yeah, I think I think on the flip side
of that, like, if you are a kid, like, don't
be afraid to speak up about certain symptoms you ever, Yeah, yeah,
as a parent, encourage your you know, kids to do
that because I'm not I don't know exactly love like
expressing I like, I have a high paints ones.
Speaker 5 (41:31):
And I also don't be in like because I don't
even want to go to the doctor. You know, it's
not what you're saying it.
Speaker 4 (41:34):
Yeah, I kind of contributed to the issue a little
bit because I didn't.
Speaker 5 (41:38):
But as I've.
Speaker 4 (41:39):
Gotten older and realized, oh, if I just you know,
speak up and say something, we're going to get to.
Speaker 5 (41:42):
The bottom of it. It's gotten better.
Speaker 4 (41:45):
So I would, you know, high advise any kid, even
if it's an uncomfortable subject because you know, CEI, heck's
not fun getting sick.
Speaker 5 (41:50):
It's not fun.
Speaker 4 (41:51):
Yeah, still to do it because that's how it eventually
leads and helps. Because it just kind of keep it
to yourself, it's not really going to get any better.
Speaker 3 (41:58):
Right, And I think the third one would be like
tolerance and kindness to others. I know, I you know,
not even gluten became like a trendy thing for a while,
so I might have rolled my eyes and like, okay,
you know, and it's school when you can't bring certain
things in the classroom because of the other kids. I mean,
I was always tolerant of that. I've never wanted to
have someone have like a peanut allergy or a situation
(42:19):
like that. But it's so for the most part, it's
been good for us. But there are some restaurants where
I feel like there's a side and I get it.
No one wants to do the extra work. So it's
so funny because once you're introduced to it, like my
parents and Peyton's dad sibling, you know, all of a sudden,
you're like, oh my gosh, I get it now, and
you're so compassionate to all the auto I means, where
before you might just be like, well, those.
Speaker 5 (42:39):
Things aren't my problems.
Speaker 4 (42:40):
Sometimes you just see them in like movies like the
Kid that has an allergy that's only you painted well,
but they talk about whute an allergies the movie Oh yeah.
Speaker 5 (42:47):
Yeah.
Speaker 4 (42:48):
So once you get like you become one of those people,
like you realize like, okay, this is you know, X,
Y and Z, and you navigated Yeah.
Speaker 1 (42:57):
Kindness. Yeah, that's definitely a patience kindness. I love that.
Oh you guys are so awesome, Thank you so much
for sharing with h is so so happy to have you.
You know, we're we're gosh. I think we're like nine
months into doing this podcast now, and it's been so informative.
I love learning a little more every day. I've learned
(43:18):
a lot today, So thank you again for sharing your story,
and hopefully we could come back and maybe we can
talk about your when you're doing the drive? Are you
when is that? What? Like month is that?
Speaker 5 (43:28):
Yeah? We started about November.
Speaker 4 (43:30):
Yeah, November, and then we have our usual like Teddy
Bear party thing and yeah, we deliver the bears right.
Speaker 3 (43:40):
Yeah, there's a lot of local businesses who participate. We
get somebody, Yeah, you don't have to come to our house.
Speaker 1 (43:47):
Wait are we driving your house? Okay? Good. I love
to hear that, and we will definitely talk more about
that in the in the coming months. Thank you guys,
have a wonderful day and and stay safe and I
will tell everybody to be patient if you hear something analogy.
Speaker 3 (44:08):
Thank you. M HM.
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