December 5, 2023 • 34 mins
For decades, Eliza dismissed her GI flare-ups and irritated skin. But after the birth of her first child, her concerns escalated, fearing she might faint while caring for her baby. She turned to her sister, who had paralleling symptoms, to explore any potential connection between their experiences. Ignoring the burning pains for so long, Eliza and her doctors dive into her symptomatic past and family history. They uncover a diagnosis that would restore normalcy in her life.
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Speaker 1 (00:04):
Even if you wanted to feel better or muscle through it,
you just can't. Really, it's not just nausea. It's like
almost that kind of fear of the pain.
Speaker 2 (00:14):
I think it was after she had children, she said,
do you ever get this kind of cramp under your
right rib? I was stemy, you know, it sounded muscular
to me.
Speaker 3 (00:25):
Some people deny their symptoms until they're on the deathbed.
Other people I've seen the doctor all the time about symptoms.
Speaker 1 (00:33):
It just felt like a burning, almost like an ice
cube was in there. Both really cold and you know
what I mean, that searing kind of burn.
Speaker 4 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:12):
These are their stories. Lauren Bribe Pacheco and this is symptomatic.
(01:32):
Eliza Minette Price is a critically acclaimed writer who's written
three novels and whose work has appeared in a variety
of magazines, all while juggling all the responsibilities of being
an active mother of four. I, even as a little kid,
would read a lot and take the kitchen list or
whatever and turn it sideways to make it look like
(01:55):
a book and write a little story. But as you
get to know her, she's pretty unassuming about her success.
Speaker 2 (02:02):
She doesn't shine the light on herself too much, and
she's very modest about what she does. And oh, I
don't really know how I did it. I don't think
she really realizes how talented she is.
Speaker 4 (02:16):
That was Eliza's sister, Carrie. They grew up together in
a big family, two of seven kids, which grew to
ten when our father remarried. Needless to say, it often
made it easy for illnesses and injuries to fly under
the radar.
Speaker 1 (02:31):
I think in a big family there is the sort
of getting lost in the shuffle, Like I don't know
why I'm limping all the time. You know, It's like
you might have broken your foot, but I don't know.
Speaker 4 (02:40):
It's like, how would you describe Eliza to someone who
doesn't know her.
Speaker 5 (02:47):
Oh my gosh.
Speaker 2 (02:49):
So I'm trying to keep it unemotional. She's the youngest
of seven. There were six of us who were very
close in age. And then a six year gap, and
then my mother had Eliza, so I was fourteen. So
to me, she's almost more like a daughter than a sister.
She is just one of the most kind, steady, positive, perceptive, loving,
(03:17):
you know, I just can't say enough nice things about her.
Speaker 5 (03:20):
Honestly, she's one of my favorite people.
Speaker 4 (03:24):
The big family mentality meant there was an understanding that
not every cut or scrape would be coddled, and that
some smaller health issues were just shrugged off. But there
was an unbreakable connection shared amongst the siblings.
Speaker 1 (03:39):
You know, not that everything comes back to losing my mom,
but there was both a loneliness in our house and
a total togetherness with this tragedy that happened. And I
did feel like, well, I have my siblings, you know,
I always have them.
Speaker 4 (03:55):
If I'm not mistaken, your mom passed in just a
tragic car accident.
Speaker 5 (03:59):
Yes, she died in a car crash.
Speaker 2 (04:01):
Eliza was in second grade and I was six months
out of college working in New York.
Speaker 5 (04:08):
So she was seven and I was twenty two.
Speaker 2 (04:11):
And right after that I went home for a chunk
of time helping our dad and Eliza, and it was
just a really confusing, crazy time, and at the bottom
of it was this beautiful little blonde girl who had
been the apple.
Speaker 5 (04:27):
Of my mother's eye.
Speaker 2 (04:29):
And I just really wanted to make sure that whatever
I could do in my life to make her life nicer,
I would do.
Speaker 4 (04:38):
Her mother's passing was undoubtedly a formative moment for Eliza
and her family. Their sibling bond was something Eliza cherished
and wanted to replicate in her own family. But long
before Eliza's journey as a mother even began, unexplained abdomen
pain started to creep up on her first boiling over
when she studied abroad in France as a teen. Looking back,
(05:03):
if you have to think about the first time now
you realize something was wrong, but you just basically internalized
it and soldiered ahead, when was the first time you
remember having symptoms of any sort?
Speaker 1 (05:17):
I mean, the biggest, most obvious one was in high school.
I spent a year abroad in France, and I was
living with the French family.
Speaker 4 (05:27):
Carrie remembers the start of Eliza's difficulties really well too.
Speaker 2 (05:31):
Junior year, she was probably fifteen years old. She went
to boarding school when she was thirteen, which is insane,
But I think it was just that one episode.
Speaker 4 (05:39):
Was it just like a stomach ache or was it
severe gastro intestinal?
Speaker 1 (05:44):
It was like I could have gone to the bathroom diarrhea.
I mean, you know, I also had a cigarette because
I was a smoker at the time, like a good
fifteen year old in nineteen eighty five. So I was
waiting at the bus and I thought, Okay, maybe the
cigarette is making myself. Do I feel sick? Do I
need to find a toilet? I also think I might faint,
Like I just felt extreme food poisoning enough that I
(06:07):
left the bus stop started walking back to the house
that I was living in, and I think I might
have even kind of passed out, But I remember playing
it down. It's like, oh, I ate too much fiber.
That's what I sort of thought in my mind, like
that's all.
Speaker 4 (06:22):
That must have been scary, though, yeah, it.
Speaker 1 (06:25):
Was kind of scary, but I also just thought, Okay,
I'm just this is a stomach bug. I don't know
what is going on. Around that same time, one of
my best friends, she and I both had little red
dot rashes on us. You know, we thought is it ringworm?
Like what is this? You know, you didn't have Google then,
so it was more like word of mouth, you know,
(06:45):
like what is that? So she and I both went
to a dermatologist together, a French dermatologist.
Speaker 4 (06:51):
Can you just describe the rash? And was it you
thought identical to your friend?
Speaker 1 (06:57):
Just little red dots with sort of a flakin on top.
But to a dermatologist's eye, hers looked obviously like some
virus and mine looked like, I guess, classic psoriasis. So
that little episode with my stomach and the onset of psoriasis,
which I kind of had on and off throughout my
(07:17):
teen years and my life in general, that I look
back to as sort of an obvious time of something
different going on.
Speaker 4 (07:28):
While an early diagnosis of psoriasis helped to explain the
skin rashes, it didn't really explain away her stomach issues.
This was the beginning of her overwhelming but also very
sporadic episodes, making it hard to notice a pattern of
potential triggers or causes. When you got back to the States,
did your stomach issues get better or did you just
(07:53):
learn to live with them?
Speaker 1 (07:54):
Yeah, so my stomach issues after that weird episode, I
didn't really notice anything different, you know, I wasn't feeling
sick to my stomach necessarily, or if I did, I
just would attribute it to eating something with high fiber,
or you know, I had too much coffee or whatever.
But I wasn't struggling or noticing my stomach. The skin, however,
(08:16):
was definitely part of my teenage years. I mean not
it sometimes would just only be on my elbows or knees.
I'd have little plaques of psoriasis, but sometimes it would
kind of flare up and sort of be semi dots
all over my body. So that was part of life.
Speaker 4 (08:32):
During her teenage years, the time already filled with anxiety
around what people think of you, her plaquesoriasis became more
of a physical esthetic concern. But as she got older,
her stomach pains started to return, although they were manifesting differently.
When was the next time you remember something sticking out
(08:52):
as noteworthy in terms of a health issue.
Speaker 1 (08:55):
Then, well, I do remember I was working at.
Speaker 4 (08:59):
NBC, so at this point you're in your twenties.
Speaker 1 (09:03):
Very young twenties. I do remember having kind of a
distinct like burning sensation in kind of above my stomach,
like right under my right rib, on my sort of
center whatever that bone is, the breastplate there, like it
just felt like a burning almost like an ice cube
(09:23):
was in there. Both really cold and you know what
I mean, that.
Speaker 4 (09:27):
Kind of burn, a searing kind of pain.
Speaker 1 (09:30):
Yes, that sort of would go back to my back almost,
So it wasn't so specific and hurting like ah, you know, debilitating.
It was just kind of when I would be quiet
and working, I would notice it was there.
Speaker 4 (09:43):
What did you attribute that to?
Speaker 1 (09:45):
Well, I went to just a normal GP doctor and
they just thought, oh, that's acid reflux or you know.
And I had never been taking anything, you know. I
wouldn't go to the store like, oh, I have such
bad gas or I'm so. I mean, I'd get mildly
bloated from time to time, and I thought, is it
an ulcer? Just the word ulcer felt like that fit
because it burned, you know. And I never got any
(10:10):
tests done really.
Speaker 4 (10:12):
At the time, Eliza was starting her career in New
York City. She tried to push through the painful and
distracting flare ups, but her attention is diverted when she
was given more insight into possible complications.
Speaker 1 (10:27):
Whenever I would try to go give blood at thirty
Rock they would tell me that they couldn't take it
because I'm anemic, and I thought anemic, you know, and
I just thought, okay, I'm a working girl in the city,
smoked cigarettes, and you know, I just thought I was
anemic because I didn't eat perfectly, or because I was
female or something. I don't know. I didn't worry about it.
(10:48):
I also wasn't getting my period. At one point, I thought, oh,
it's because I went off the pill, you know, and
it can just take a while. But it took quite long,
long enough that I went to go see like a
pituitary land specialist, you know, like a hormone person, and
he did some blood tests and he said, you're high
in prolactin, like the hormone that you breastfeed with. So
(11:10):
that was bizarre, but it explained why my period wasn't coming.
Speaker 4 (11:14):
How did the doctor explain the elevated levels of prolactin,
I mean, since you weren't pregnant and you hadn't given birth.
Speaker 1 (11:23):
I think he said, just go back on the pill,
or eventually it'll come back. I don't know what to
tell you.
Speaker 4 (11:27):
So prolactin anemia and ongoing stomach issues and you just
kind of learned to live with all of the above.
Speaker 1 (11:36):
Yeah, none of them were debilitating. The one that bothered
me the most was sort of the achy burn in
my stomach that wasn't there all the time. It's like,
you know, when you're maybe it was there all the time,
but I was so used to it that I only
noticed it when I was tired. Once the doctor had
said it's acid, I thought, oh, it's just acid.
Speaker 4 (11:54):
But as unusual as eliza symptom seemed, they were more
than familiar to her older sister Carrie. You know, it's
interesting too, because you were experiencing a lot of the
same symptoms that she did, in terms of the anemia
and the kind of strange, random pain, and in a
strange way, within a sibling set, when you have shared symptoms,
(12:17):
it almost dismisses them, it normalizes them.
Speaker 5 (12:21):
Yeah, and I think I did say that.
Speaker 2 (12:24):
We'd talk about everything, and I'd say, oh, that's normal,
I had that, or yeah I had that too.
Speaker 5 (12:29):
You know, I didn't know what was going on.
Speaker 4 (12:31):
So in trying to give her comfort, you guys are
basically perpetuating the fact that you're living with something that's
not diagnosed very much. So, yeah, things had drastically changed
after Eliza had her first child, Rowan. Her flare ups
didn't accelerate in frequency, but rather in intensity, and that
(12:53):
left her worried about the worst case scenario, being overwhelmed
by a flare up while watching her young son.
Speaker 1 (13:00):
After having grown in New York City, you know, I
felt like I was going to pass out, the same
thing like in France, Like not just normal sitting on
the toilet, but like I think I'm gonna fall and
I might hit my head. So I called the doctor
and he's like, oh, what trouble are you up to now?
Because I was only about two weeks postpartum and I
(13:20):
was alone in the apartment with a baby, and I
didn't want to like pass out while Rowan was still
sleeping in his nap And the doctor said, well, I'm
bet you're fine, but it could be a blood plot
or you know, like whatever, like since it was all new.
And then I felt better. I mean I felt like
i'd been through the ringer, like I had gotten sick.
Speaker 4 (13:40):
Would you categorize it as extreme lightheadedness or a kind
of like wave of nausea? What did that feel like
when you think you were going to pass out.
Speaker 1 (13:50):
I mean, all I can kind of liken it to
is severe food poisoning, Like when you feel like you
can't get up. You can't, like even if you wanted
to feel better or muscle through, it just can't. Really,
you've got to be near a toilet. It's not just nausea.
It's like almost that kind of fear of the pain.
Speaker 4 (14:09):
Around this point, Eliza and her husband Eric moved their
young family to the suburbs. Here's her sister Carrie's reflection
of that time.
Speaker 2 (14:18):
I was worried that she didn't have enough help. You know,
our mother wasn't around, her siblings, didn't live down the street.
And whenever I brought that up, she would say, well,
Eric's usually home by three or four, so I have
two pairs of hands.
Speaker 4 (14:33):
Do you recall her complaining about anything in particular.
Speaker 2 (14:37):
I think it was after she had children. She said,
do you ever get this kind of cramp under your
right rib?
Speaker 5 (14:45):
And I said no.
Speaker 1 (14:47):
I was stymied.
Speaker 2 (14:48):
I thought, well, maybe she's got you know, some people
get stitches more than others, or you know, it sounded
muscular to me.
Speaker 4 (14:54):
While manifesting differently. Carrie was also having significant health issues
that were in the way of her life. It would
be their paralleled symptoms and Carrie support that would hold
the key to figuring out what had been plaguing Eliza
for over fifteen years. We'll be right back with Symptomatic,
(15:15):
a Medical Mystery Podcast. Now back to Symptomatic a Medical
Mystery Podcast. Eliza Minette Price had been having infrequent but
intense GI flare ups for over a decade. They had
progressed to the point where she was scared she might
(15:37):
pass out while watching her young children. On top of that,
there were two seemingly unrelated diagnoses of plaque psoriasis and anemia.
Eliza and her doctors thought they were each individual issues
to be treated separately. That was until her sister Carrie's
GI issues started getting worse. So, Carrie, when do you
(16:06):
remember your health issues manifesting in such a way that
you decided I need to get help or look into
this And how did they manifest themselves?
Speaker 2 (16:18):
I probably had diarrhea more than was normal, but I
didn't really realize that.
Speaker 5 (16:24):
I just thought that's the way I am.
Speaker 2 (16:27):
I had two babies in my late thirties and then
one when I was forty one, and by the time
I was forty five. I was really tired and I
went to my GP and said, I feel really depleted
and tired, and she said, well, it's perimenopause and a
lot of women I know feel this way, and I
can prescribe you an antidepressant. And I said, but I'm
(16:50):
not depressed. I feel depleted, and she sort of said, well,
I would try it. It works for a lot of people.
So I didn't because I wasn't depressed. Here's Eliza's take.
Speaker 1 (17:03):
I can remember her saying, you know, I feel like
there are knives in my stomach, and I'd be like, ooh,
that sounds bad, Like I'm glad I don't feel that way,
even though I guess maybe I did it, you know,
but like you're saying, it's like a that's not me.
And at the time, she was starting to think she
had an ulcer.
Speaker 4 (17:21):
Carrie did not have an ulcer, but her doctor noticed
these subtle symptomatic clues piling up. It was the observation
of something unrelated to her symptoms that served as the
final piece allowing everything to fall into place.
Speaker 2 (17:37):
And I went to the Gastrokuy when I got home,
explained my symptoms. I was wearing a small cross, and
he said, do you have any Irish blood? And I said,
my mother is all Irish. And he said, you know,
I think I know what might be wrong with you.
Would you be willing to fast from midnight tonight and
I can. I'm doing endoscopies tomorrow. He said, I need
(17:59):
to look down to your small intestines and see what's
going on. I said, okay, so did it. Called me
the next morning and he said, you have Celiac disease.
Don't go online, come in to see me tomorrow.
Speaker 4 (18:11):
Carrie, who's fourteen years older, gets diagnosed with Silly Act
disease and reaches out to all of you guys.
Speaker 1 (18:18):
Yeah, what's your initial thought?
Speaker 4 (18:20):
Did you rush to the doctor?
Speaker 1 (18:22):
And I did not know. At this point. I had
four little kids, the youngest one was probably two at
the time. No, I didn't because I also thought I'm
not ill at my stomach and gluten. I mean at
the time, I didn't even know what is this gluten.
Speaker 4 (18:38):
Luckily, as the eldest in their large family, Carrie was
quite comfortable pressuring her younger siblings into getting tested.
Speaker 2 (18:47):
And I'm like sort of clutching, going, You've got to
do this you guys. You know my voice is like, Okay,
that's Carrie the boss.
Speaker 4 (18:55):
I love that. So you kind of stepped into the
role of doctor mom for your siblings. Yes, And after
a year or so, Carrie's persistent pressure paid off.
Speaker 1 (19:08):
So it probably wasn't that long till I had a
check up. But this was a checkup at my normal GP.
And I said, could you also when you're doing the
blood work, could you test me for Celiac disease because
my sister just got diagnosed. And her doctor said, tell
all that your siblings to all get checked out. It's
heavily hereditary. And he said, oh, you don't have that disease.
And I said, well, you know, could you test me?
(19:31):
He said, can you eat a bagel? And I said,
I absolutely can eat a bagel. He said, well, then
you don't have that disease.
Speaker 4 (19:39):
Not exactly a scientific means of ruling out a disease.
Speaker 1 (19:44):
No, And looking back, I realized I could do a
lot of things. I mean, I could have lived my
entire life probably eating bagels and pasta and living the
way that I was living. And then he was very dismissive,
not super rude, but just dismissive, and I thought, yeah,
I or whatever. He's a doctor. And then the next
week one of the nurses called me up and said,
(20:05):
you do have that disease. I said, what disease you know?
And she said, you have Celiac.
Speaker 4 (20:12):
The blurry picture of her individual symptoms was now coming
into full focus. The fifteen year old Eliza studying abroad
in France, was overloading on croissants and baguettes, the young
mother Eliza snacking on toddler leftovers between parenting and work
at in the psoriasis, and the anemia. It was now
(20:32):
all starting to make sense. This diagnosis meant Eliza was
now faced with a major lifestyle change. So, just to
start us off, if you could give me your name
and your title.
Speaker 3 (20:45):
So I'm Peter Green, I'm the professor of medicine at
Columbia University, and I'm the director of the Celiac Disease Center.
Speaker 4 (20:55):
I would love it if you would just define Celiac
disease because I think a lot of the problem is
that since gluten has been vilified, that people who say
they have a gluten sensitivity end up doing a disservice
to people who have Celiac. Disease because people believe it's
an elective disease.
Speaker 3 (21:17):
So we currently define coeliac disease as an autoimmune condition.
That's unique in that we know the environmental precipitant, which
is glutant, and individuals with Celiac disease have this inflammatory
condition in their small intestine and systemic symptoms and manifestations
(21:42):
that respond to gluten withdrawal. So you've got the autoimmune component,
which is the antibodies, you've got the inflammatory component, and
you've got villisatrophy, and you've got improvement on a gluten
free diet.
Speaker 4 (21:59):
Doctor Green is one of the most prominent voices in
the Celiac community and the guiding force for both Eliza
and Carrie through their Celiac journeys. Because of how severe
her episodes could get, Eliza now had to give up
some of the things she loved most bagels, pizza, pasta,
all of it. Luckily, Carrie had been living with her
(22:19):
diagnoses for a while and gladly took her younger sister
under her wing. So having navigated it just a few
years before her, you were able to send your cheat
sheet of texts and emails of what to buy where,
to shop exactly.
Speaker 2 (22:36):
This kind of toothpaste is good. Don't use a Veno
oatmeal oil anymore. There's a whole list of things. And
we're big researchers and we love to share information with
each other. So she was, you know, keep it coming.
It wasn't, you know, stop, I don't want to hear
this anymore. It was like, please tell me what else.
What's a good kind of pasta, What kind of bread
(22:56):
do you like? There's a lot of information. Share it
that way.
Speaker 1 (23:00):
My GP was like, avoid this, avoid that. Just don't
have pizza, don't have it at a you know, but
not like be very careful gluten lurks and all sorts
of things and it could destroy your you know. Like
they just didn't know. But I did know who to call,
which was my sister who had read up all on
it and knew who to see and sent me to
(23:21):
an expert who had written a whole book on it,
who was right across the river at Columbia in New York.
Speaker 4 (23:28):
Introdoctor Green.
Speaker 1 (23:29):
Introdoctor Green.
Speaker 3 (23:31):
We've been very interested in the quality of life of
individuals because we showed that the individuals that are hyper
vigilant that knew most about the disease, knew most about
gluten had a worse quality of life. So, you know,
somehow we have to get people to tread a middle
line in which they're gluten free, but they're not totally
(23:52):
preoccupied with it. Like some of the behaviors that we
used to encourage life, calling beforehand, going to restaurants, taking
your own food, not going out, et ceter are not
healthy behaviors. They are actually behaviors that predict the development
of an eating disorder that are increased in Celiac disease.
(24:15):
So somehow we've got to teach people to be vigilant,
but not hypervigilant. And that leads to another point that
there is the development of therapies and we're really working
very hard to study drugs to help people with Celiac disease.
Because the diet becomes the major factor that determines quality
(24:37):
of life.
Speaker 4 (24:38):
Maintaining a delicate balance between managing your diet to prevent
episodes and avoiding forming an obsession that infiltrates every dietary
and or social decision can be challenging, but ignoring Celiac
disease and persisting in consuming gluten could result in irreversible
long term effects on the body. Especially in Eliza situation.
(25:00):
Do you remember in terms of where she was in
her journey, she had gotten diagnosed by a local practitioner,
but she really hadn't wrapped her head around it until
she sat in front of you.
Speaker 3 (25:13):
I think that the diagnosis had been suggested but not confirmed,
And we confirmed the diagnosis, and she had metabolic abnormalities
reflecting the effect of having Celiac disease, like she had
a quite a marked disorder of her calcium metabolism and
(25:35):
had this secondary hyperparathidism. So people with Celiac disease can
have very prominent symptoms or no obvious symptoms, and that
does not preclude the presence of metabolic abnormalities that are
doing harm to other areas of the body. Because it
actually brings home the fact that Celiac disease is a
(25:58):
systemic disorder. And people can say, but I have no symptoms.
But they can have osteoporosis, they can have anemia, they
can have neurological manifestations or bad skin manifestations. It's such
a diverse condition and it's underdiagnosed because it just doesn't
fit into any little box. We think only about half
(26:20):
those with Celiac disease are diagnosed. Some people deny their
symptoms until they're on the death that other people are
seeing the doctor all the time, and you know about
symptoms that other people wouldn't kind of go to the
doctor for. So it's very hard to generalize in that respect.
Speaker 4 (26:40):
Celiac disease having such a variance and severity and how
it manifests in individuals was likely a factor in why
it took so long for Eliza to get tested and diagnosed.
With a hereditary nature of Celiac disease, Carrie tried to
conviensilize it to also get her kids tested. So you
end up going to the world's foremost expert basically and
(27:03):
get a master class on all things Celiac, which actually
came in very handy, not just for you personally now
because of the genetic link. What did they suggest you
do immediately with your four children, Well.
Speaker 1 (27:20):
What happened is I didn't bring them in anywhere until
my third, the girl named tests when she was about eight.
She was always a skinny little thing, you know, but
super active, and one winter I remember once sitting on
her bed with her and she had circles under her
eyes and looked kind of frail. She said, when am
(27:42):
I going to feel normal? So we just had a
blood test done at our doctor and it was like
off the charts for celiac disease.
Speaker 4 (27:52):
Eliza then had all of her kids tested and three
of the four of them tested positive. So her whole
family wasn't it together trying to navigate what they could
and could not eat, all without any prescriptive treatment for
the disease other than those dietary changes, there is currently
no medication. In what way does that simplify treating celiac
(28:16):
disease and in what way does that complicate it?
Speaker 3 (28:20):
Well, it does both, so you're correct. Currently the only
management for coeliac disease is a gluten free diet, and
the FDA actually has recognized that and has fast tracked
some drug development. And there are different drugs that are
(28:40):
being tested, like there's an enzyme that will digest gluten
that has been the most advanced. With different therapies. There
are various therapies, and now there are some people who
have taken drugs to get rid of other autoimmune diseases,
and it appears to have got rid of their Celiac disease,
so there's very great promise.
Speaker 4 (29:01):
Eliza had a steep learning curve navigating meals around the
foods that triggered her episodes. It didn't help that requesting
gluten free options was often greeted with skepticism or judgment.
Speaker 1 (29:14):
So it's not that hard to not eat gluten once
you know what it is and what to avoid. However,
the sort of boutique side of it, like in a restaurant,
having to say, like, I'm gluten free and I don't
know like that just was very hard for me to
kind of navigate without feeling that sort of like kind
(29:34):
of high maintenance aspect just really sucks.
Speaker 4 (29:37):
But also I think that that's fueled by the misconception
that it is an acquired or an elective.
Speaker 1 (29:45):
Disease completely, And there are many people who just decide
not to eat gluten and it makes them feel better.
And there are many people who have a gluten intolerance
which isn't Celiac disease and they're very uncomfortable eating gluten.
So it's not that different. But I mean, having been
a waitress, I totally understand the annoyance and I also
(30:06):
completely respect everybody's you know, what they want to eat.
Speaker 4 (30:09):
You feel extra, you feel I'm.
Speaker 1 (30:11):
Feel extra, or even going to a friend's dinner party,
you know, and then not really eating the food. And
I don't mean to be rude at all, you know
what I mean, But it's like, I just don't want
to be sick.
Speaker 4 (30:22):
Her sister Carrie couldn't agree more.
Speaker 2 (30:25):
I think a lot of people are gluten intolerant, but
they don't have this autoimmune disease that when you eat
gluten you strip your guts. So though restaurants have gotten
much better about listing allergens or you know, does anybody
in your party have an allergen? I still think there's
a bit of eye rolling when I say, oh, I
(30:47):
have a gluten allergy, you know, and other people at
the table might go, yeah, well, you know that's chic.
Speaker 4 (30:54):
You know, it may sound chic, but the repercussions are
anything but glamorous.
Speaker 1 (31:01):
Now, if I get glutened, even after being gluten free
maybe a year and a half. The first time, I
don't even remember what I had, but I got sick.
I was like, what is this? But in one weird way,
it was gratifying to know that, yes, the doctor is correct.
This is poison for me, you know what I mean?
(31:22):
Like you call it getting glutent, yes, getting glutened, I
mean it goes away. Is very much like food poisoning.
You know, it's like you're just in the bathroom sort
of on the floor for three hours and then you're
wiped out, but you're fine.
Speaker 4 (31:38):
But it's certainly not an elective or an acquired reaction.
It knows a very physical and that's severely So what
do you hope people take away from all of this.
Speaker 1 (31:50):
I hope that people just asked to get a celia
test if there's any any remote doubt, even if it's
like I feel fine, but my sibling who's never been
tested for Celiac disease, seems like maybe they have it
or not. Even it's just a simple blood test, just
check it off on the next test. It's super super simple,
(32:12):
and just to know could prevent a lot of things
down the road once either it's because of the small
intestine being super damaged or things that go on, like
calcium can get depleted, vitamin D gets messed up. You know,
there's all sorts of things that affect people differently, but
it does seem like there's far more awareness of it
now among family practitioners.
Speaker 4 (32:33):
You can find out more on Celiac disease and doctor
Green's work on Columbia's Celiaccenter website Coeliac Disease Center dot
Columbia dot edu. You can also find doctor Green's book
Coeliac Disease A Hidden Epidemic, along with Eliza Minette prices
incredible catalog of work wherever books are sold.
Speaker 1 (32:57):
My name is Eliza mine Price and I was diagnosed
with Ciliac disease when I was thirty nine years old.
Speaker 4 (33:06):
On next week's season finale of Symptomatic, Lauren is a
professional dancer who loves to share her passion for fitness
and dance, but she notices her body, which once used
to float across the floor, is now having trouble keeping up.
Speaker 2 (33:21):
I thought I broke my toe, and I said to
my husband, I said, something's wrong.
Speaker 5 (33:27):
I don't remember breaking my foot. It is bad to
the point where I cannot move.
Speaker 4 (33:31):
Lauren Harry's to uncover the undiagnosed illness causing her slow
physical decline, all while juggling the responsibilities of being a
new parent and continuing to inspire the next generation of dancers.
That's it for this episode of Symptomatic. Thank you for listening.
What did you think of this episode? We would love
(33:52):
to hear from you. Send us your thoughts or share
a medical mystery of your own at Symptomatic at iHeartMedia
dot com and please don't forget to rate and review
this podcast wherever you're listening. Symptomatic Medical Mystery Podcast is
a production of Ruby Studio from iHeartMedia. Our show is
hosted by me Lauren Bret Pacheco. Executive producers are Matt
(34:14):
Romano and myself. Our EP of post production is James Foster.
Our producers are Sierra Kaiser and John Irwin. And this
episode was researched by Diana Davis
Even if you wanted to feel better or muscle through it,
you just can't. Really, it's not just nausea. It's like
almost that kind of fear of the pain.
Speaker 2 (00:14):
I think it was after she had children, she said,
do you ever get this kind of cramp under your
right rib? I was stemy, you know, it sounded muscular
to me.
Speaker 3 (00:25):
Some people deny their symptoms until they're on the deathbed.
Other people I've seen the doctor all the time about symptoms.
Speaker 1 (00:33):
It just felt like a burning, almost like an ice
cube was in there. Both really cold and you know
what I mean, that searing kind of burn.
Speaker 4 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:12):
These are their stories. Lauren Bribe Pacheco and this is symptomatic.
(01:32):
Eliza Minette Price is a critically acclaimed writer who's written
three novels and whose work has appeared in a variety
of magazines, all while juggling all the responsibilities of being
an active mother of four. I, even as a little kid,
would read a lot and take the kitchen list or
whatever and turn it sideways to make it look like
(01:55):
a book and write a little story. But as you
get to know her, she's pretty unassuming about her success.
Speaker 2 (02:02):
She doesn't shine the light on herself too much, and
she's very modest about what she does. And oh, I
don't really know how I did it. I don't think
she really realizes how talented she is.
Speaker 4 (02:16):
That was Eliza's sister, Carrie. They grew up together in
a big family, two of seven kids, which grew to
ten when our father remarried. Needless to say, it often
made it easy for illnesses and injuries to fly under
the radar.
Speaker 1 (02:31):
I think in a big family there is the sort
of getting lost in the shuffle, Like I don't know
why I'm limping all the time. You know, It's like
you might have broken your foot, but I don't know.
Speaker 4 (02:40):
It's like, how would you describe Eliza to someone who
doesn't know her.
Speaker 5 (02:47):
Oh my gosh.
Speaker 2 (02:49):
So I'm trying to keep it unemotional. She's the youngest
of seven. There were six of us who were very
close in age. And then a six year gap, and
then my mother had Eliza, so I was fourteen. So
to me, she's almost more like a daughter than a sister.
She is just one of the most kind, steady, positive, perceptive, loving,
(03:17):
you know, I just can't say enough nice things about her.
Speaker 5 (03:20):
Honestly, she's one of my favorite people.
Speaker 4 (03:24):
The big family mentality meant there was an understanding that
not every cut or scrape would be coddled, and that
some smaller health issues were just shrugged off. But there
was an unbreakable connection shared amongst the siblings.
Speaker 1 (03:39):
You know, not that everything comes back to losing my mom,
but there was both a loneliness in our house and
a total togetherness with this tragedy that happened. And I
did feel like, well, I have my siblings, you know,
I always have them.
Speaker 4 (03:55):
If I'm not mistaken, your mom passed in just a
tragic car accident.
Speaker 5 (03:59):
Yes, she died in a car crash.
Speaker 2 (04:01):
Eliza was in second grade and I was six months
out of college working in New York.
Speaker 5 (04:08):
So she was seven and I was twenty two.
Speaker 2 (04:11):
And right after that I went home for a chunk
of time helping our dad and Eliza, and it was
just a really confusing, crazy time, and at the bottom
of it was this beautiful little blonde girl who had
been the apple.
Speaker 5 (04:27):
Of my mother's eye.
Speaker 2 (04:29):
And I just really wanted to make sure that whatever
I could do in my life to make her life nicer,
I would do.
Speaker 4 (04:38):
Her mother's passing was undoubtedly a formative moment for Eliza
and her family. Their sibling bond was something Eliza cherished
and wanted to replicate in her own family. But long
before Eliza's journey as a mother even began, unexplained abdomen
pain started to creep up on her first boiling over
when she studied abroad in France as a teen. Looking back,
(05:03):
if you have to think about the first time now
you realize something was wrong, but you just basically internalized
it and soldiered ahead, when was the first time you
remember having symptoms of any sort?
Speaker 1 (05:17):
I mean, the biggest, most obvious one was in high school.
I spent a year abroad in France, and I was
living with the French family.
Speaker 4 (05:27):
Carrie remembers the start of Eliza's difficulties really well too.
Speaker 2 (05:31):
Junior year, she was probably fifteen years old. She went
to boarding school when she was thirteen, which is insane,
But I think it was just that one episode.
Speaker 4 (05:39):
Was it just like a stomach ache or was it
severe gastro intestinal?
Speaker 1 (05:44):
It was like I could have gone to the bathroom diarrhea.
I mean, you know, I also had a cigarette because
I was a smoker at the time, like a good
fifteen year old in nineteen eighty five. So I was
waiting at the bus and I thought, Okay, maybe the
cigarette is making myself. Do I feel sick? Do I
need to find a toilet? I also think I might faint,
Like I just felt extreme food poisoning enough that I
(06:07):
left the bus stop started walking back to the house
that I was living in, and I think I might
have even kind of passed out, But I remember playing
it down. It's like, oh, I ate too much fiber.
That's what I sort of thought in my mind, like
that's all.
Speaker 4 (06:22):
That must have been scary, though, yeah, it.
Speaker 1 (06:25):
Was kind of scary, but I also just thought, Okay,
I'm just this is a stomach bug. I don't know
what is going on. Around that same time, one of
my best friends, she and I both had little red
dot rashes on us. You know, we thought is it ringworm?
Like what is this? You know, you didn't have Google then,
so it was more like word of mouth, you know,
(06:45):
like what is that? So she and I both went
to a dermatologist together, a French dermatologist.
Speaker 4 (06:51):
Can you just describe the rash? And was it you
thought identical to your friend?
Speaker 1 (06:57):
Just little red dots with sort of a flakin on top.
But to a dermatologist's eye, hers looked obviously like some
virus and mine looked like, I guess, classic psoriasis. So
that little episode with my stomach and the onset of psoriasis,
which I kind of had on and off throughout my
(07:17):
teen years and my life in general, that I look
back to as sort of an obvious time of something
different going on.
Speaker 4 (07:28):
While an early diagnosis of psoriasis helped to explain the
skin rashes, it didn't really explain away her stomach issues.
This was the beginning of her overwhelming but also very
sporadic episodes, making it hard to notice a pattern of
potential triggers or causes. When you got back to the States,
did your stomach issues get better or did you just
(07:53):
learn to live with them?
Speaker 1 (07:54):
Yeah, so my stomach issues after that weird episode, I
didn't really notice anything different, you know, I wasn't feeling
sick to my stomach necessarily, or if I did, I
just would attribute it to eating something with high fiber,
or you know, I had too much coffee or whatever.
But I wasn't struggling or noticing my stomach. The skin, however,
(08:16):
was definitely part of my teenage years. I mean not
it sometimes would just only be on my elbows or knees.
I'd have little plaques of psoriasis, but sometimes it would
kind of flare up and sort of be semi dots
all over my body. So that was part of life.
Speaker 4 (08:32):
During her teenage years, the time already filled with anxiety
around what people think of you, her plaquesoriasis became more
of a physical esthetic concern. But as she got older,
her stomach pains started to return, although they were manifesting differently.
When was the next time you remember something sticking out
(08:52):
as noteworthy in terms of a health issue.
Speaker 1 (08:55):
Then, well, I do remember I was working at.
Speaker 4 (08:59):
NBC, so at this point you're in your twenties.
Speaker 1 (09:03):
Very young twenties. I do remember having kind of a
distinct like burning sensation in kind of above my stomach,
like right under my right rib, on my sort of
center whatever that bone is, the breastplate there, like it
just felt like a burning almost like an ice cube
(09:23):
was in there. Both really cold and you know what
I mean, that.
Speaker 4 (09:27):
Kind of burn, a searing kind of pain.
Speaker 1 (09:30):
Yes, that sort of would go back to my back almost,
So it wasn't so specific and hurting like ah, you know, debilitating.
It was just kind of when I would be quiet
and working, I would notice it was there.
Speaker 4 (09:43):
What did you attribute that to?
Speaker 1 (09:45):
Well, I went to just a normal GP doctor and
they just thought, oh, that's acid reflux or you know.
And I had never been taking anything, you know. I
wouldn't go to the store like, oh, I have such
bad gas or I'm so. I mean, I'd get mildly
bloated from time to time, and I thought, is it
an ulcer? Just the word ulcer felt like that fit
because it burned, you know. And I never got any
(10:10):
tests done really.
Speaker 4 (10:12):
At the time, Eliza was starting her career in New
York City. She tried to push through the painful and
distracting flare ups, but her attention is diverted when she
was given more insight into possible complications.
Speaker 1 (10:27):
Whenever I would try to go give blood at thirty
Rock they would tell me that they couldn't take it
because I'm anemic, and I thought anemic, you know, and
I just thought, okay, I'm a working girl in the city,
smoked cigarettes, and you know, I just thought I was
anemic because I didn't eat perfectly, or because I was
female or something. I don't know. I didn't worry about it.
(10:48):
I also wasn't getting my period. At one point, I thought, oh,
it's because I went off the pill, you know, and
it can just take a while. But it took quite long,
long enough that I went to go see like a
pituitary land specialist, you know, like a hormone person, and
he did some blood tests and he said, you're high
in prolactin, like the hormone that you breastfeed with. So
(11:10):
that was bizarre, but it explained why my period wasn't coming.
Speaker 4 (11:14):
How did the doctor explain the elevated levels of prolactin,
I mean, since you weren't pregnant and you hadn't given birth.
Speaker 1 (11:23):
I think he said, just go back on the pill,
or eventually it'll come back. I don't know what to
tell you.
Speaker 4 (11:27):
So prolactin anemia and ongoing stomach issues and you just
kind of learned to live with all of the above.
Speaker 1 (11:36):
Yeah, none of them were debilitating. The one that bothered
me the most was sort of the achy burn in
my stomach that wasn't there all the time. It's like,
you know, when you're maybe it was there all the time,
but I was so used to it that I only
noticed it when I was tired. Once the doctor had
said it's acid, I thought, oh, it's just acid.
Speaker 4 (11:54):
But as unusual as eliza symptom seemed, they were more
than familiar to her older sister Carrie. You know, it's
interesting too, because you were experiencing a lot of the
same symptoms that she did, in terms of the anemia
and the kind of strange, random pain, and in a
strange way, within a sibling set, when you have shared symptoms,
(12:17):
it almost dismisses them, it normalizes them.
Speaker 5 (12:21):
Yeah, and I think I did say that.
Speaker 2 (12:24):
We'd talk about everything, and I'd say, oh, that's normal,
I had that, or yeah I had that too.
Speaker 5 (12:29):
You know, I didn't know what was going on.
Speaker 4 (12:31):
So in trying to give her comfort, you guys are
basically perpetuating the fact that you're living with something that's
not diagnosed very much. So, yeah, things had drastically changed
after Eliza had her first child, Rowan. Her flare ups
didn't accelerate in frequency, but rather in intensity, and that
(12:53):
left her worried about the worst case scenario, being overwhelmed
by a flare up while watching her young son.
Speaker 1 (13:00):
After having grown in New York City, you know, I
felt like I was going to pass out, the same
thing like in France, Like not just normal sitting on
the toilet, but like I think I'm gonna fall and
I might hit my head. So I called the doctor
and he's like, oh, what trouble are you up to now?
Because I was only about two weeks postpartum and I
(13:20):
was alone in the apartment with a baby, and I
didn't want to like pass out while Rowan was still
sleeping in his nap And the doctor said, well, I'm
bet you're fine, but it could be a blood plot
or you know, like whatever, like since it was all new.
And then I felt better. I mean I felt like
i'd been through the ringer, like I had gotten sick.
Speaker 4 (13:40):
Would you categorize it as extreme lightheadedness or a kind
of like wave of nausea? What did that feel like
when you think you were going to pass out.
Speaker 1 (13:50):
I mean, all I can kind of liken it to
is severe food poisoning, Like when you feel like you
can't get up. You can't, like even if you wanted
to feel better or muscle through, it just can't. Really,
you've got to be near a toilet. It's not just nausea.
It's like almost that kind of fear of the pain.
Speaker 4 (14:09):
Around this point, Eliza and her husband Eric moved their
young family to the suburbs. Here's her sister Carrie's reflection
of that time.
Speaker 2 (14:18):
I was worried that she didn't have enough help. You know,
our mother wasn't around, her siblings, didn't live down the street.
And whenever I brought that up, she would say, well,
Eric's usually home by three or four, so I have
two pairs of hands.
Speaker 4 (14:33):
Do you recall her complaining about anything in particular.
Speaker 2 (14:37):
I think it was after she had children. She said,
do you ever get this kind of cramp under your
right rib?
Speaker 5 (14:45):
And I said no.
Speaker 1 (14:47):
I was stymied.
Speaker 2 (14:48):
I thought, well, maybe she's got you know, some people
get stitches more than others, or you know, it sounded
muscular to me.
Speaker 4 (14:54):
While manifesting differently. Carrie was also having significant health issues
that were in the way of her life. It would
be their paralleled symptoms and Carrie support that would hold
the key to figuring out what had been plaguing Eliza
for over fifteen years. We'll be right back with Symptomatic,
(15:15):
a Medical Mystery Podcast. Now back to Symptomatic a Medical
Mystery Podcast. Eliza Minette Price had been having infrequent but
intense GI flare ups for over a decade. They had
progressed to the point where she was scared she might
(15:37):
pass out while watching her young children. On top of that,
there were two seemingly unrelated diagnoses of plaque psoriasis and anemia.
Eliza and her doctors thought they were each individual issues
to be treated separately. That was until her sister Carrie's
GI issues started getting worse. So, Carrie, when do you
(16:06):
remember your health issues manifesting in such a way that
you decided I need to get help or look into
this And how did they manifest themselves?
Speaker 2 (16:18):
I probably had diarrhea more than was normal, but I
didn't really realize that.
Speaker 5 (16:24):
I just thought that's the way I am.
Speaker 2 (16:27):
I had two babies in my late thirties and then
one when I was forty one, and by the time
I was forty five. I was really tired and I
went to my GP and said, I feel really depleted
and tired, and she said, well, it's perimenopause and a
lot of women I know feel this way, and I
can prescribe you an antidepressant. And I said, but I'm
(16:50):
not depressed. I feel depleted, and she sort of said, well,
I would try it. It works for a lot of people.
So I didn't because I wasn't depressed. Here's Eliza's take.
Speaker 1 (17:03):
I can remember her saying, you know, I feel like
there are knives in my stomach, and I'd be like, ooh,
that sounds bad, Like I'm glad I don't feel that way,
even though I guess maybe I did it, you know,
but like you're saying, it's like a that's not me.
And at the time, she was starting to think she
had an ulcer.
Speaker 4 (17:21):
Carrie did not have an ulcer, but her doctor noticed
these subtle symptomatic clues piling up. It was the observation
of something unrelated to her symptoms that served as the
final piece allowing everything to fall into place.
Speaker 2 (17:37):
And I went to the Gastrokuy when I got home,
explained my symptoms. I was wearing a small cross, and
he said, do you have any Irish blood? And I said,
my mother is all Irish. And he said, you know,
I think I know what might be wrong with you.
Would you be willing to fast from midnight tonight and
I can. I'm doing endoscopies tomorrow. He said, I need
(17:59):
to look down to your small intestines and see what's
going on. I said, okay, so did it. Called me
the next morning and he said, you have Celiac disease.
Don't go online, come in to see me tomorrow.
Speaker 4 (18:11):
Carrie, who's fourteen years older, gets diagnosed with Silly Act
disease and reaches out to all of you guys.
Speaker 1 (18:18):
Yeah, what's your initial thought?
Speaker 4 (18:20):
Did you rush to the doctor?
Speaker 1 (18:22):
And I did not know. At this point. I had
four little kids, the youngest one was probably two at
the time. No, I didn't because I also thought I'm
not ill at my stomach and gluten. I mean at
the time, I didn't even know what is this gluten.
Speaker 4 (18:38):
Luckily, as the eldest in their large family, Carrie was
quite comfortable pressuring her younger siblings into getting tested.
Speaker 2 (18:47):
And I'm like sort of clutching, going, You've got to
do this you guys. You know my voice is like, Okay,
that's Carrie the boss.
Speaker 4 (18:55):
I love that. So you kind of stepped into the
role of doctor mom for your siblings. Yes, And after
a year or so, Carrie's persistent pressure paid off.
Speaker 1 (19:08):
So it probably wasn't that long till I had a
check up. But this was a checkup at my normal GP.
And I said, could you also when you're doing the
blood work, could you test me for Celiac disease because
my sister just got diagnosed. And her doctor said, tell
all that your siblings to all get checked out. It's
heavily hereditary. And he said, oh, you don't have that disease.
And I said, well, you know, could you test me?
(19:31):
He said, can you eat a bagel? And I said,
I absolutely can eat a bagel. He said, well, then
you don't have that disease.
Speaker 4 (19:39):
Not exactly a scientific means of ruling out a disease.
Speaker 1 (19:44):
No, And looking back, I realized I could do a
lot of things. I mean, I could have lived my
entire life probably eating bagels and pasta and living the
way that I was living. And then he was very dismissive,
not super rude, but just dismissive, and I thought, yeah,
I or whatever. He's a doctor. And then the next
week one of the nurses called me up and said,
(20:05):
you do have that disease. I said, what disease you know?
And she said, you have Celiac.
Speaker 4 (20:12):
The blurry picture of her individual symptoms was now coming
into full focus. The fifteen year old Eliza studying abroad
in France, was overloading on croissants and baguettes, the young
mother Eliza snacking on toddler leftovers between parenting and work
at in the psoriasis, and the anemia. It was now
(20:32):
all starting to make sense. This diagnosis meant Eliza was
now faced with a major lifestyle change. So, just to
start us off, if you could give me your name
and your title.
Speaker 3 (20:45):
So I'm Peter Green, I'm the professor of medicine at
Columbia University, and I'm the director of the Celiac Disease Center.
Speaker 4 (20:55):
I would love it if you would just define Celiac
disease because I think a lot of the problem is
that since gluten has been vilified, that people who say
they have a gluten sensitivity end up doing a disservice
to people who have Celiac. Disease because people believe it's
an elective disease.
Speaker 3 (21:17):
So we currently define coeliac disease as an autoimmune condition.
That's unique in that we know the environmental precipitant, which
is glutant, and individuals with Celiac disease have this inflammatory
condition in their small intestine and systemic symptoms and manifestations
(21:42):
that respond to gluten withdrawal. So you've got the autoimmune component,
which is the antibodies, you've got the inflammatory component, and
you've got villisatrophy, and you've got improvement on a gluten
free diet.
Speaker 4 (21:59):
Doctor Green is one of the most prominent voices in
the Celiac community and the guiding force for both Eliza
and Carrie through their Celiac journeys. Because of how severe
her episodes could get, Eliza now had to give up
some of the things she loved most bagels, pizza, pasta,
all of it. Luckily, Carrie had been living with her
(22:19):
diagnoses for a while and gladly took her younger sister
under her wing. So having navigated it just a few
years before her, you were able to send your cheat
sheet of texts and emails of what to buy where,
to shop exactly.
Speaker 2 (22:36):
This kind of toothpaste is good. Don't use a Veno
oatmeal oil anymore. There's a whole list of things. And
we're big researchers and we love to share information with
each other. So she was, you know, keep it coming.
It wasn't, you know, stop, I don't want to hear
this anymore. It was like, please tell me what else.
What's a good kind of pasta, What kind of bread
(22:56):
do you like? There's a lot of information. Share it
that way.
Speaker 1 (23:00):
My GP was like, avoid this, avoid that. Just don't
have pizza, don't have it at a you know, but
not like be very careful gluten lurks and all sorts
of things and it could destroy your you know. Like
they just didn't know. But I did know who to call,
which was my sister who had read up all on
it and knew who to see and sent me to
(23:21):
an expert who had written a whole book on it,
who was right across the river at Columbia in New York.
Speaker 4 (23:28):
Introdoctor Green.
Speaker 1 (23:29):
Introdoctor Green.
Speaker 3 (23:31):
We've been very interested in the quality of life of
individuals because we showed that the individuals that are hyper
vigilant that knew most about the disease, knew most about
gluten had a worse quality of life. So, you know,
somehow we have to get people to tread a middle
line in which they're gluten free, but they're not totally
(23:52):
preoccupied with it. Like some of the behaviors that we
used to encourage life, calling beforehand, going to restaurants, taking
your own food, not going out, et ceter are not
healthy behaviors. They are actually behaviors that predict the development
of an eating disorder that are increased in Celiac disease.
(24:15):
So somehow we've got to teach people to be vigilant,
but not hypervigilant. And that leads to another point that
there is the development of therapies and we're really working
very hard to study drugs to help people with Celiac disease.
Because the diet becomes the major factor that determines quality
(24:37):
of life.
Speaker 4 (24:38):
Maintaining a delicate balance between managing your diet to prevent
episodes and avoiding forming an obsession that infiltrates every dietary
and or social decision can be challenging, but ignoring Celiac
disease and persisting in consuming gluten could result in irreversible
long term effects on the body. Especially in Eliza situation.
(25:00):
Do you remember in terms of where she was in
her journey, she had gotten diagnosed by a local practitioner,
but she really hadn't wrapped her head around it until
she sat in front of you.
Speaker 3 (25:13):
I think that the diagnosis had been suggested but not confirmed,
And we confirmed the diagnosis, and she had metabolic abnormalities
reflecting the effect of having Celiac disease, like she had
a quite a marked disorder of her calcium metabolism and
(25:35):
had this secondary hyperparathidism. So people with Celiac disease can
have very prominent symptoms or no obvious symptoms, and that
does not preclude the presence of metabolic abnormalities that are
doing harm to other areas of the body. Because it
actually brings home the fact that Celiac disease is a
(25:58):
systemic disorder. And people can say, but I have no symptoms.
But they can have osteoporosis, they can have anemia, they
can have neurological manifestations or bad skin manifestations. It's such
a diverse condition and it's underdiagnosed because it just doesn't
fit into any little box. We think only about half
(26:20):
those with Celiac disease are diagnosed. Some people deny their
symptoms until they're on the death that other people are
seeing the doctor all the time, and you know about
symptoms that other people wouldn't kind of go to the
doctor for. So it's very hard to generalize in that respect.
Speaker 4 (26:40):
Celiac disease having such a variance and severity and how
it manifests in individuals was likely a factor in why
it took so long for Eliza to get tested and diagnosed.
With a hereditary nature of Celiac disease, Carrie tried to
conviensilize it to also get her kids tested. So you
end up going to the world's foremost expert basically and
(27:03):
get a master class on all things Celiac, which actually
came in very handy, not just for you personally now
because of the genetic link. What did they suggest you
do immediately with your four children, Well.
Speaker 1 (27:20):
What happened is I didn't bring them in anywhere until
my third, the girl named tests when she was about eight.
She was always a skinny little thing, you know, but
super active, and one winter I remember once sitting on
her bed with her and she had circles under her
eyes and looked kind of frail. She said, when am
(27:42):
I going to feel normal? So we just had a
blood test done at our doctor and it was like
off the charts for celiac disease.
Speaker 4 (27:52):
Eliza then had all of her kids tested and three
of the four of them tested positive. So her whole
family wasn't it together trying to navigate what they could
and could not eat, all without any prescriptive treatment for
the disease other than those dietary changes, there is currently
no medication. In what way does that simplify treating celiac
(28:16):
disease and in what way does that complicate it?
Speaker 3 (28:20):
Well, it does both, so you're correct. Currently the only
management for coeliac disease is a gluten free diet, and
the FDA actually has recognized that and has fast tracked
some drug development. And there are different drugs that are
(28:40):
being tested, like there's an enzyme that will digest gluten
that has been the most advanced. With different therapies. There
are various therapies, and now there are some people who
have taken drugs to get rid of other autoimmune diseases,
and it appears to have got rid of their Celiac disease,
so there's very great promise.
Speaker 4 (29:01):
Eliza had a steep learning curve navigating meals around the
foods that triggered her episodes. It didn't help that requesting
gluten free options was often greeted with skepticism or judgment.
Speaker 1 (29:14):
So it's not that hard to not eat gluten once
you know what it is and what to avoid. However,
the sort of boutique side of it, like in a restaurant,
having to say, like, I'm gluten free and I don't
know like that just was very hard for me to
kind of navigate without feeling that sort of like kind
(29:34):
of high maintenance aspect just really sucks.
Speaker 4 (29:37):
But also I think that that's fueled by the misconception
that it is an acquired or an elective.
Speaker 1 (29:45):
Disease completely, And there are many people who just decide
not to eat gluten and it makes them feel better.
And there are many people who have a gluten intolerance
which isn't Celiac disease and they're very uncomfortable eating gluten.
So it's not that different. But I mean, having been
a waitress, I totally understand the annoyance and I also
(30:06):
completely respect everybody's you know, what they want to eat.
Speaker 4 (30:09):
You feel extra, you feel I'm.
Speaker 1 (30:11):
Feel extra, or even going to a friend's dinner party,
you know, and then not really eating the food. And
I don't mean to be rude at all, you know
what I mean, But it's like, I just don't want
to be sick.
Speaker 4 (30:22):
Her sister Carrie couldn't agree more.
Speaker 2 (30:25):
I think a lot of people are gluten intolerant, but
they don't have this autoimmune disease that when you eat
gluten you strip your guts. So though restaurants have gotten
much better about listing allergens or you know, does anybody
in your party have an allergen? I still think there's
a bit of eye rolling when I say, oh, I
(30:47):
have a gluten allergy, you know, and other people at
the table might go, yeah, well, you know that's chic.
Speaker 4 (30:54):
You know, it may sound chic, but the repercussions are
anything but glamorous.
Speaker 1 (31:01):
Now, if I get glutened, even after being gluten free
maybe a year and a half. The first time, I
don't even remember what I had, but I got sick.
I was like, what is this? But in one weird way,
it was gratifying to know that, yes, the doctor is correct.
This is poison for me, you know what I mean?
(31:22):
Like you call it getting glutent, yes, getting glutened, I
mean it goes away. Is very much like food poisoning.
You know, it's like you're just in the bathroom sort
of on the floor for three hours and then you're
wiped out, but you're fine.
Speaker 4 (31:38):
But it's certainly not an elective or an acquired reaction.
It knows a very physical and that's severely So what
do you hope people take away from all of this.
Speaker 1 (31:50):
I hope that people just asked to get a celia
test if there's any any remote doubt, even if it's
like I feel fine, but my sibling who's never been
tested for Celiac disease, seems like maybe they have it
or not. Even it's just a simple blood test, just
check it off on the next test. It's super super simple,
(32:12):
and just to know could prevent a lot of things
down the road once either it's because of the small
intestine being super damaged or things that go on, like
calcium can get depleted, vitamin D gets messed up. You know,
there's all sorts of things that affect people differently, but
it does seem like there's far more awareness of it
now among family practitioners.
Speaker 4 (32:33):
You can find out more on Celiac disease and doctor
Green's work on Columbia's Celiaccenter website Coeliac Disease Center dot
Columbia dot edu. You can also find doctor Green's book
Coeliac Disease A Hidden Epidemic, along with Eliza Minette prices
incredible catalog of work wherever books are sold.
Speaker 1 (32:57):
My name is Eliza mine Price and I was diagnosed
with Ciliac disease when I was thirty nine years old.
Speaker 4 (33:06):
On next week's season finale of Symptomatic, Lauren is a
professional dancer who loves to share her passion for fitness
and dance, but she notices her body, which once used
to float across the floor, is now having trouble keeping up.
Speaker 2 (33:21):
I thought I broke my toe, and I said to
my husband, I said, something's wrong.
Speaker 5 (33:27):
I don't remember breaking my foot. It is bad to
the point where I cannot move.
Speaker 4 (33:31):
Lauren Harry's to uncover the undiagnosed illness causing her slow
physical decline, all while juggling the responsibilities of being a
new parent and continuing to inspire the next generation of dancers.
That's it for this episode of Symptomatic. Thank you for listening.
What did you think of this episode? We would love
(33:52):
to hear from you. Send us your thoughts or share
a medical mystery of your own at Symptomatic at iHeartMedia
dot com and please don't forget to rate and review
this podcast wherever you're listening. Symptomatic Medical Mystery Podcast is
a production of Ruby Studio from iHeartMedia. Our show is
hosted by me Lauren Bret Pacheco. Executive producers are Matt
(34:14):
Romano and myself. Our EP of post production is James Foster.
Our producers are Sierra Kaiser and John Irwin. And this
episode was researched by Diana Davis
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