0:04

Even if you wanted to feel better or

0:06

muscle through it, you just can't. Really, it's

0:09

not just nausea. It's like almost

0:12

that kind of fear of the pain.

0:14

I think it was after she had children,

0:17

she said, do you ever get this kind of cramp

0:20

under your right rib? I

0:22

was stemy, you know, it sounded muscular

0:24

to me.

0:25

Some people deny their symptoms until

0:28

they're on the deathbed. Other people

0:30

I've seen the doctor all the time about

0:32

symptoms.

0:33

It just felt like a burning, almost

0:36

like an ice cube was in there.

0:38

Both really cold and you know what I mean,

0:40

that searing kind of burn.

0:48

How terrifying would it be to fight

0:50

an unknown enemy, one you

0:52

didn't recognize and didn't see coming.

0:55

What if that enemy was coming from

0:57

within a disease that

1:00

even doctors couldn't identify. Nearly

1:03

half of all Americans suffer

1:05

from some chronic illness, and many

1:08

struggle for an accurate diagnosis.

1:12

These are their stories. Lauren

1:17

Bribe Pacheco and this is

1:19

symptomatic. Eliza

1:33

Minette Price is a critically acclaimed

1:35

writer who's written three novels and

1:37

whose work has appeared in a variety of magazines,

1:40

all while juggling all the responsibilities

1:43

of being an active mother of four.

1:46

I, even as a little kid, would

1:49

read a lot and take the kitchen

1:51

list or whatever and turn it sideways

1:54

to make it look like a book and write

1:56

a little story. But as you get

1:58

to know her, she's pretty unassuming about

2:01

her success.

2:02

She doesn't shine the light

2:05

on herself too much, and

2:07

she's very modest about what she

2:10

does. And oh, I don't really know how I did

2:12

it. I don't think she really realizes

2:14

how talented she is.

2:16

That was Eliza's sister, Carrie. They

2:18

grew up together in a big family,

2:21

two of seven kids, which grew to

2:23

ten when our father remarried. Needless

2:26

to say, it often made it easy for illnesses

2:28

and injuries to fly under the radar.

2:31

I think in a big family there is the sort of

2:33

getting lost in the shuffle, Like I don't

2:35

know why I'm limping all the time. You know, It's

2:37

like you might have broken your foot,

2:39

but I don't know.

2:40

It's like, how

2:43

would you describe Eliza to

2:45

someone who doesn't know her.

2:47

Oh my gosh.

2:49

So I'm trying to keep it

2:51

unemotional. She's the

2:53

youngest of seven. There were

2:55

six of us who were very close in age.

2:58

And then a six year gap, and then

3:00

my mother had Eliza, so I was fourteen.

3:03

So to me, she's almost

3:05

more like a daughter than a sister.

3:08

She is just one of the most kind,

3:12

steady, positive,

3:14

perceptive, loving,

3:17

you know, I just can't say enough nice things

3:19

about her.

3:20

Honestly, she's one of my favorite people.

3:24

The big family mentality meant there

3:26

was an understanding that not every

3:28

cut or scrape would be coddled, and

3:30

that some smaller health issues were just

3:33

shrugged off. But there was

3:35

an unbreakable connection shared

3:37

amongst the siblings.

3:39

You know, not that everything comes back

3:41

to losing my mom, but there

3:43

was both a loneliness in

3:45

our house and a total

3:47

togetherness with this tragedy

3:49

that happened. And I did feel like, well,

3:51

I have my siblings, you know, I always have them.

3:55

If I'm not mistaken, your mom passed in just

3:57

a tragic car accident.

3:59

Yes, she died in a car crash.

4:01

Eliza was in second grade and

4:04

I was six months out of college

4:06

working in New York.

4:08

So she was seven and I was twenty

4:10

two.

4:11

And right after that I went home for

4:14

a chunk of time helping

4:16

our dad and Eliza, and

4:18

it was just a really confusing,

4:21

crazy time, and at

4:23

the bottom of it was this beautiful little

4:25

blonde girl who had been the apple.

4:27

Of my mother's eye.

4:29

And I just really wanted to make

4:31

sure that whatever

4:33

I could do in my life to make her life

4:36

nicer, I would do.

4:38

Her mother's passing was undoubtedly

4:41

a formative moment for Eliza and

4:43

her family. Their sibling bond

4:45

was something Eliza cherished and wanted to

4:47

replicate in her own family. But

4:49

long before Eliza's journey as a mother even

4:52

began, unexplained abdomen

4:54

pain started to creep up on her first

4:56

boiling over when she studied abroad in France

4:59

as a teen. Looking

5:02

back, if you have to think

5:04

about the first time now

5:06

you realize something was wrong, but

5:09

you just basically internalized it and

5:11

soldiered ahead, when was the first

5:13

time you remember having symptoms

5:15

of any sort?

5:17

I mean, the biggest, most

5:19

obvious one was in

5:21

high school. I spent a year abroad in

5:24

France, and I was living with the French

5:26

family.

5:27

Carrie remembers the start of Eliza's difficulties

5:30

really well too.

5:31

Junior year, she was probably fifteen years old.

5:33

She went to boarding school when she was thirteen, which is insane,

5:36

But I think it was just that one episode.

5:39

Was it just like a stomach ache

5:41

or was it severe gastro intestinal?

5:44

It was like I could have gone

5:46

to the bathroom diarrhea. I mean,

5:49

you know, I also had a cigarette

5:51

because I was a smoker at the time, like a good

5:53

fifteen year old in nineteen eighty five. So

5:56

I was waiting at the bus and I thought, Okay, maybe the

5:58

cigarette is making myself. Do I feel sick? Do

6:01

I need to find a toilet? I also think

6:03

I might faint, Like I just felt extreme

6:05

food poisoning enough that I left the bus

6:07

stop started walking back to the

6:10

house that I was living in, and I

6:12

think I might have even kind of passed out,

6:14

But I remember playing it down. It's

6:16

like, oh, I ate too much fiber. That's

6:19

what I sort of thought in my mind, like that's

6:22

all.

6:22

That must have been scary, though, yeah,

6:24

it.

6:25

Was kind of scary, but I also just

6:27

thought, Okay, I'm just this is a stomach

6:29

bug. I don't know what is going on. Around

6:32

that same time, one of my best

6:34

friends, she and I both had little

6:37

red dot rashes on

6:39

us. You know, we thought is it ringworm?

6:41

Like what is this? You know, you didn't have Google then,

6:43

so it was more like word of mouth, you know, like what

6:45

is that? So she and

6:47

I both went to a dermatologist together, a

6:49

French dermatologist.

6:51

Can you just describe the rash?

6:53

And was it you thought identical to

6:55

your friend?

6:57

Just little red dots with

6:59

sort of a flakin on top. But to

7:01

a dermatologist's eye, hers looked

7:03

obviously like some virus and

7:05

mine looked like, I guess, classic

7:08

psoriasis. So that

7:10

little episode with my stomach

7:12

and the onset of psoriasis,

7:15

which I kind of had on and off

7:17

throughout my teen years and my life in general,

7:20

that I look back to as

7:22

sort of an obvious time

7:25

of something different going on.

7:28

While an early diagnosis of psoriasis

7:30

helped to explain the skin rashes, it

7:33

didn't really explain away her stomach

7:35

issues. This was the beginning

7:37

of her overwhelming but also

7:40

very sporadic episodes, making

7:42

it hard to notice a pattern of potential

7:44

triggers or causes. When

7:46

you got back to the States, did

7:48

your stomach issues get better or

7:51

did you just learn to live with

7:53

them?

7:54

Yeah, so my stomach issues after that weird

7:56

episode, I didn't really notice

7:58

anything different, you know, I wasn't

8:01

feeling sick to my stomach necessarily,

8:03

or if I did, I just would attribute

8:05

it to eating something with high

8:07

fiber, or you know, I

8:09

had too much coffee or whatever. But I

8:12

wasn't struggling or noticing my stomach.

8:15

The skin, however, was definitely part

8:17

of my teenage years. I mean not it

8:19

sometimes would just only be on my elbows

8:22

or knees. I'd have little plaques of psoriasis,

8:24

but sometimes it would kind of flare up and

8:26

sort of be semi dots

8:28

all over my body. So that

8:30

was part of life.

8:32

During her teenage years, the time already

8:34

filled with anxiety around what people

8:37

think of you, her plaquesoriasis

8:39

became more of a physical esthetic

8:41

concern. But as she got older,

8:43

her stomach pains started to return,

8:46

although they were manifesting differently.

8:49

When was the next time you remember something

8:52

sticking out as noteworthy in terms

8:54

of a health issue.

8:55

Then, well, I do remember

8:57

I was working at.

8:59

NBC, so at this point

9:01

you're in your twenties.

9:03

Very young twenties. I do

9:05

remember having kind of a distinct

9:07

like burning sensation

9:10

in kind of above my stomach, like

9:12

right under my right rib, on

9:15

my sort of center whatever

9:17

that bone is, the breastplate there,

9:20

like it just felt like a burning almost

9:22

like an ice cube was in there.

9:25

Both really cold and you know what I mean,

9:27

that.

9:27

Kind of burn, a searing kind

9:29

of pain.

9:30

Yes, that sort of would go back to my back

9:33

almost, So it wasn't so specific

9:35

and hurting like ah, you know, debilitating.

9:37

It was just kind of when I would be quiet

9:40

and working, I would notice it

9:42

was there.

9:43

What did you attribute that to?

9:45

Well, I went to just a normal GP

9:48

doctor and they just thought, oh, that's acid reflux

9:50

or you know. And I had never been taking anything,

9:53

you know. I wouldn't go to the store like, oh, I have such

9:56

bad gas or I'm so. I

9:58

mean, I'd get mildly bloated from time

10:00

to time, and I thought, is it an ulcer?

10:02

Just the word ulcer felt like that fit because

10:05

it burned, you know. And

10:08

I never got any tests

10:11

done really.

10:12

At the time, Eliza was starting

10:14

her career in New York City. She tried

10:17

to push through the painful and distracting flare

10:19

ups, but her attention is diverted

10:21

when she was given more insight into possible

10:24

complications.

10:27

Whenever I would try to go give blood at

10:30

thirty Rock they would tell me that they

10:32

couldn't take it because I'm anemic, and

10:34

I thought anemic, you know, and I just thought, okay,

10:36

I'm a working girl in the city, smoked

10:39

cigarettes, and you know, I just thought I was anemic

10:41

because I didn't eat perfectly,

10:43

or because I was female or something.

10:46

I don't know. I didn't worry about it. I

10:48

also wasn't getting my period.

10:50

At one point, I thought, oh, it's

10:52

because I went off the pill, you know, and it can just take

10:55

a while. But it took quite long, long

10:57

enough that I went to go see like a pituitary

11:00

land specialist, you know, like a hormone

11:02

person, and he did some blood

11:04

tests and he said, you're high in

11:06

prolactin, like the hormone that

11:08

you breastfeed with. So that was

11:11

bizarre, but it explained why

11:13

my period wasn't coming.

11:14

How did the doctor explain the elevated

11:17

levels of prolactin, I mean,

11:19

since you weren't pregnant and you hadn't

11:22

given birth.

11:23

I think he said, just go back on the pill, or eventually

11:25

it'll come back. I don't know what to tell you.

11:27

So prolactin anemia and

11:30

ongoing stomach issues and

11:33

you just kind of learned to live with all

11:35

of the above.

11:36

Yeah, none of them were debilitating. The

11:38

one that bothered me the most was sort

11:40

of the achy burn in my stomach that

11:43

wasn't there all the time. It's like, you know, when you're

11:45

maybe it was there all the time, but I was so used to

11:47

it that I only noticed it when I was tired.

11:50

Once the doctor had said it's acid, I thought, oh, it's

11:52

just acid.

11:54

But as unusual as eliza symptom

11:57

seemed, they were more than familiar

11:59

to her older sister Carrie.

12:02

You know, it's interesting too, because you were experiencing

12:04

a lot of the same symptoms that she did,

12:06

in terms of the anemia and the kind

12:08

of strange, random pain, and

12:11

in a strange way, within a sibling

12:13

set, when you have shared

12:15

symptoms, it almost dismisses

12:19

them, it normalizes them.

12:21

Yeah, and I think I did say that.

12:24

We'd talk about everything, and I'd

12:26

say, oh, that's normal, I had that, or yeah I had that

12:28

too.

12:29

You know, I didn't know what was going on.

12:31

So in trying to give her comfort,

12:34

you guys are basically perpetuating

12:37

the fact that you're living with something that's

12:39

not diagnosed very much. So, yeah,

12:42

things had drastically changed after

12:45

Eliza had her first child, Rowan.

12:47

Her flare ups didn't accelerate in

12:49

frequency, but rather in intensity,

12:52

and that left her worried about the worst

12:54

case scenario, being overwhelmed

12:57

by a flare up while watching her young son.

13:00

After having grown in New York City, you

13:02

know, I felt like I was going to pass out, the

13:04

same thing like in France, Like not just

13:07

normal sitting on the toilet, but like I

13:10

think I'm gonna fall and I might hit

13:12

my head. So I called

13:14

the doctor and he's like, oh, what trouble are you

13:16

up to now? Because I was only about two weeks postpartum

13:19

and I was alone in the apartment with a baby,

13:22

and I didn't want to like pass out while

13:24

Rowan was still sleeping in

13:26

his nap And the doctor

13:28

said, well, I'm bet you're fine, but

13:30

it could be a blood plot or you know, like whatever,

13:33

like since it was all new. And

13:35

then I felt better. I mean I felt

13:37

like i'd been through the ringer, like I had gotten sick.

13:40

Would you categorize it as extreme

13:42

lightheadedness or a kind

13:44

of like wave of nausea?

13:47

What did that feel like when you think you

13:49

were going to pass out.

13:50

I mean, all I can kind of liken it to is

13:52

severe food poisoning, Like when you feel like

13:54

you can't get up. You can't,

13:56

like even if you wanted to feel better

13:58

or muscle through, it just can't. Really, you've

14:01

got to be near a toilet. It's

14:03

not just nausea. It's like almost

14:06

that kind of fear of the pain.

14:09

Around this point, Eliza and her

14:11

husband Eric moved their young family to

14:13

the suburbs. Here's her sister

14:15

Carrie's reflection of that time.

14:18

I was worried that she didn't have enough

14:20

help. You know, our mother wasn't around,

14:22

her siblings, didn't live down the street. And

14:26

whenever I brought that up, she would

14:28

say, well, Eric's usually home by

14:30

three or four, so I have two pairs

14:32

of hands.

14:33

Do you recall her complaining

14:36

about anything in particular.

14:37

I think it was after she had children.

14:40

She said, do you ever get this kind of cramp

14:43

under your right rib?

14:45

And I said no.

14:47

I was stymied.

14:48

I thought, well, maybe she's got you know, some people

14:50

get stitches more than others, or you know,

14:52

it sounded muscular to me.

14:54

While manifesting differently. Carrie

14:57

was also having significant health issues

14:59

that were in the way of her life. It

15:02

would be their paralleled symptoms and

15:04

Carrie support that would hold the

15:06

key to figuring out what had been plaguing

15:08

Eliza for over fifteen years. We'll

15:13

be right back with Symptomatic, a

15:16

Medical Mystery Podcast.

15:20

Now back to Symptomatic a Medical

15:23

Mystery Podcast. Eliza

15:29

Minette Price had been having infrequent

15:31

but intense GI flare ups for over a

15:33

decade. They had progressed to the

15:35

point where she was scared she might pass

15:38

out while watching her young children. On

15:40

top of that, there were two seemingly

15:42

unrelated diagnoses of plaque psoriasis

15:45

and anemia. Eliza and

15:47

her doctors thought they were each individual

15:50

issues to be treated separately. That

15:52

was until her sister Carrie's GI

15:54

issues started getting worse. So,

16:04

Carrie, when do you

16:06

remember your health issues

16:09

manifesting in such a way that you

16:11

decided I need to get

16:13

help or look into this And how did

16:16

they manifest themselves?

16:18

I probably had diarrhea more

16:20

than was normal, but I didn't

16:23

really realize that.

16:24

I just thought that's the way I am.

16:27

I had two babies in my late

16:29

thirties and then one when I was forty one,

16:32

and by the time I was forty five. I was really

16:34

tired and I went to my GP

16:37

and said, I

16:39

feel really depleted and

16:41

tired, and she said, well, it's perimenopause

16:44

and a lot of women I know feel this way, and

16:46

I can prescribe you an antidepressant.

16:49

And I said, but I'm not depressed.

16:52

I feel depleted, and

16:54

she sort of said, well, I would try it. It

16:57

works for a lot of people. So

16:59

I didn't because I wasn't depressed. Here's

17:01

Eliza's take.

17:03

I can remember her saying,

17:05

you know, I feel like there are knives in my stomach, and

17:08

I'd be like, ooh, that sounds bad, Like I'm

17:10

glad I don't feel that way, even though I guess maybe

17:12

I did it, you know, but like you're

17:14

saying, it's like a that's not me.

17:17

And at the time, she was starting to think

17:19

she had an ulcer.

17:21

Carrie did not have an ulcer, but

17:23

her doctor noticed these subtle symptomatic

17:26

clues piling up. It was

17:28

the observation of something unrelated to

17:30

her symptoms that served as the

17:33

final piece allowing everything

17:35

to fall into place.

17:37

And I went to the Gastrokuy

17:40

when I got home, explained my symptoms.

17:43

I was wearing a small cross, and he

17:45

said, do you have any Irish blood?

17:48

And I said, my mother is all Irish.

17:50

And he said, you know, I think I know what might be wrong

17:53

with you. Would you be willing to fast from

17:55

midnight tonight and I can. I'm doing endoscopies

17:57

tomorrow. He said, I need to look down

18:00

to your small intestines and see what's going on.

18:02

I said, okay, so did

18:04

it. Called me the next morning and

18:06

he said, you have Celiac disease. Don't go online,

18:09

come in to see me tomorrow.

18:11

Carrie, who's fourteen years older, gets

18:14

diagnosed with Silly

18:16

Act disease and reaches out to all of you guys.

18:18

Yeah, what's your initial thought?

18:20

Did you rush to the doctor?

18:22

And I did not know. At this point.

18:24

I had four little kids, the youngest one

18:27

was probably two at the time. No,

18:29

I didn't because I also thought I'm not ill

18:32

at my stomach and gluten.

18:35

I mean at the time, I didn't even know what

18:37

is this gluten.

18:38

Luckily, as the eldest in

18:40

their large family, Carrie was

18:43

quite comfortable pressuring her younger

18:45

siblings into getting tested.

18:47

And I'm like sort of clutching, going, You've

18:50

got to do this you guys. You know my voice

18:52

is like, Okay, that's Carrie the

18:54

boss.

18:55

I love that. So you kind of stepped into the

18:58

role of doctor mom for your siblings.

19:01

Yes, And after

19:03

a year or so, Carrie's persistent

19:06

pressure paid off.

19:08

So it probably wasn't that long till

19:10

I had a check up. But this was a checkup at my normal

19:13

GP. And I said,

19:15

could you also when you're doing the blood work, could you test

19:17

me for Celiac disease because my sister just got diagnosed.

19:20

And her doctor said, tell all that your siblings

19:22

to all get checked out. It's heavily

19:25

hereditary. And he said,

19:27

oh, you don't have that disease. And I said, well,

19:29

you know, could you test me? He said,

19:31

can you eat a bagel? And

19:34

I said, I absolutely can

19:36

eat a bagel. He said, well, then you don't

19:38

have that disease.

19:39

Not exactly a scientific means

19:42

of ruling out a disease.

19:44

No, And looking back, I realized I

19:46

could do a lot of things. I mean, I could have lived

19:48

my entire life probably eating

19:50

bagels and pasta and living

19:52

the way that I was living. And then he

19:55

was very dismissive, not super

19:57

rude, but just dismissive, and I thought, yeah,

19:59

I or whatever. He's a doctor. And

20:02

then the next week one

20:04

of the nurses called me up and said, you do have

20:06

that disease. I said, what disease

20:08

you know? And she said, you have Celiac.

20:12

The blurry picture of her individual

20:14

symptoms was now coming into full

20:16

focus. The fifteen year old Eliza

20:19

studying abroad in France, was overloading

20:21

on croissants and baguettes, the

20:24

young mother Eliza snacking on toddler

20:26

leftovers between parenting and work

20:28

at in the psoriasis, and the anemia.

20:32

It was now all starting to make sense. This

20:34

diagnosis meant Eliza was now faced

20:36

with a major lifestyle change.

20:40

So, just to start us off, if

20:43

you could give me your name and your title.

20:45

So I'm Peter Green, I'm

20:48

the professor of medicine

20:50

at Columbia University, and I'm

20:52

the director of the Celiac Disease Center.

20:55

I would love it if you would just define

20:57

Celiac disease because I think a lot of

20:59

the problem is that since gluten

21:02

has been vilified, that people

21:05

who say they have a gluten sensitivity

21:09

end up doing a disservice to people who have

21:11

Celiac. Disease because people believe

21:13

it's an elective disease.

21:17

So we currently define

21:19

coeliac disease as

21:22

an autoimmune condition. That's

21:25

unique in that we know the environmental

21:28

precipitant, which is glutant, and

21:31

individuals with Celiac disease have

21:34

this inflammatory condition in their

21:36

small intestine and systemic

21:40

symptoms and manifestations

21:42

that respond to gluten withdrawal.

21:46

So you've got the autoimmune

21:48

component, which is the antibodies,

21:51

you've got the inflammatory component,

21:54

and you've got villisatrophy, and you've got improvement

21:56

on a gluten free diet.

21:59

Doctor Green is one of the most prominent

22:01

voices in the Celiac community and

22:03

the guiding force for both Eliza and

22:05

Carrie through their Celiac journeys. Because

22:08

of how severe her episodes could get,

22:11

Eliza now had to give up some of the things she

22:13

loved most bagels, pizza,

22:15

pasta, all of it. Luckily,

22:17

Carrie had been living with her diagnoses

22:19

for a while and gladly took her younger

22:22

sister under her wing. So

22:24

having navigated it just a

22:26

few years before her, you were

22:28

able to send your cheat sheet

22:31

of texts and emails of what

22:33

to buy where, to shop exactly.

22:36

This kind of toothpaste is good. Don't

22:38

use a Veno oatmeal oil anymore.

22:40

There's a whole list of things. And we're

22:43

big researchers and we love to share

22:46

information with each other. So she

22:48

was, you know, keep it coming. It wasn't,

22:50

you know, stop, I don't want to hear this anymore.

22:52

It was like, please tell me what else.

22:54

What's a good kind of pasta, What kind of bread do you

22:56

like? There's a lot of information.

22:59

Share it that way.

23:00

My GP was like, avoid this,

23:03

avoid that. Just don't have pizza,

23:05

don't have it at a you know, but not like

23:08

be very careful gluten lurks and all

23:10

sorts of things and it could destroy your you

23:12

know. Like they just didn't know. But I did

23:14

know who to call, which was my sister who

23:17

had read up all on it and knew who to

23:19

see and sent me to an

23:22

expert who had written a whole

23:24

book on it, who was right across the river

23:26

at Columbia in New York.

23:28

Introdoctor Green.

23:29

Introdoctor Green.

23:31

We've been very interested in the quality of

23:33

life of individuals because we showed

23:36

that the individuals that are hyper vigilant

23:38

that knew most about the

23:40

disease, knew most about gluten

23:42

had a worse quality of life. So,

23:45

you know, somehow we have to get people

23:47

to tread a middle line in which

23:49

they're gluten free, but they're not

23:52

totally preoccupied with it.

23:54

Like some of the behaviors that we

23:57

used to encourage life, calling

24:00

beforehand, going to restaurants, taking

24:02

your own food, not going

24:04

out, et ceter are not healthy

24:07

behaviors. They are actually behaviors

24:09

that predict the development

24:11

of an eating disorder that are

24:13

increased in Celiac disease. So

24:16

somehow we've got to teach people to be vigilant,

24:18

but not hypervigilant. And that

24:21

leads to another point that there

24:24

is the development of therapies

24:26

and we're really working very hard

24:28

to study drugs to

24:30

help people with Celiac disease. Because

24:33

the diet becomes the major factor

24:35

that determines quality of life.

24:38

Maintaining a delicate balance between

24:40

managing your diet to prevent episodes

24:43

and avoiding forming an obsession that

24:45

infiltrates every dietary and or

24:47

social decision can be challenging,

24:50

but ignoring Celiac disease and persisting

24:53

in consuming gluten could

24:55

result in irreversible long term effects

24:57

on the body. Especially in Eliza

24:59

situation. Do you remember

25:02

in terms of where she was in her journey,

25:04

she had gotten diagnosed

25:06

by a local practitioner, but she

25:09

really hadn't wrapped her head around it until

25:12

she sat in front of you.

25:13

I think that the diagnosis

25:16

had been suggested but not confirmed,

25:19

And we confirmed the diagnosis,

25:22

and she had metabolic abnormalities

25:25

reflecting the effect

25:27

of having Celiac disease, like

25:29

she had a quite a marked disorder

25:32

of her calcium metabolism

25:35

and had this secondary hyperparathidism.

25:38

So people with Celiac disease

25:41

can have very prominent

25:43

symptoms or no obvious symptoms,

25:46

and that does not preclude

25:49

the presence of metabolic abnormalities

25:51

that are doing harm to other areas of the body.

25:54

Because it actually brings home

25:56

the fact that Celiac disease is a

25:58

systemic disorder. And

26:01

people can say, but I have no symptoms.

26:03

But they can have osteoporosis, they

26:05

can have anemia, they can have neurological

26:08

manifestations or bad

26:10

skin manifestations. It's such

26:12

a diverse condition and it's

26:15

underdiagnosed because it just doesn't fit into

26:17

any little box. We think only

26:19

about half those with Celiac disease

26:22

are diagnosed. Some people

26:24

deny their symptoms until

26:26

they're on the death that other people

26:28

are seeing the doctor all the time, and you

26:31

know about symptoms that other people

26:33

wouldn't kind of go to the doctor for. So

26:36

it's very hard to generalize in

26:38

that respect.

26:40

Celiac disease having such a

26:42

variance and severity and how it manifests

26:45

in individuals was likely a

26:47

factor in why it took so long for Eliza

26:49

to get tested and diagnosed. With

26:52

a hereditary nature of Celiac disease, Carrie

26:55

tried to conviensilize it to also get

26:57

her kids tested. So you end

26:59

up going to the world's

27:01

foremost expert basically and

27:03

get a master class on

27:06

all things Celiac, which

27:08

actually came in very handy, not

27:10

just for you personally now because of

27:13

the genetic link. What

27:15

did they suggest you do immediately

27:18

with your four children, Well.

27:20

What happened is I didn't bring them in anywhere

27:22

until my third, the

27:25

girl named tests when

27:27

she was about eight. She was always a skinny

27:29

little thing, you know, but super active,

27:32

and one winter I

27:34

remember once sitting on her bed with her and she

27:37

had circles under her eyes and looked

27:40

kind of frail. She said, when

27:42

am I going to feel normal? So

27:45

we just had a blood test done at

27:47

our doctor and it was like

27:49

off the charts for celiac disease.

27:52

Eliza then had all of her kids

27:54

tested and three of the four

27:56

of them tested positive. So

27:59

her whole family wasn't it together trying

28:01

to navigate what they could and could not eat,

28:04

all without any prescriptive treatment

28:06

for the disease other than those dietary

28:09

changes, there is currently

28:11

no medication. In what

28:13

way does that simplify treating

28:16

celiac disease and in what way

28:18

does that complicate it?

28:20

Well, it does both, so

28:22

you're correct. Currently the only

28:25

management for coeliac

28:27

disease is a gluten free diet,

28:30

and the FDA actually has

28:32

recognized that and has fast

28:35

tracked some drug development.

28:38

And there are different drugs that are being

28:40

tested, like there's an enzyme

28:43

that will digest gluten that has

28:46

been the most advanced. With different

28:48

therapies. There are various

28:50

therapies, and now there are some

28:52

people who have taken drugs to get rid of other

28:54

autoimmune diseases, and it appears

28:56

to have got rid of their Celiac disease, so

28:59

there's very great promise.

29:01

Eliza had a steep learning curve navigating

29:04

meals around the foods that triggered her episodes.

29:07

It didn't help that requesting gluten free

29:09

options was often greeted with skepticism

29:12

or judgment.

29:14

So it's not that hard to

29:16

not eat gluten once you

29:18

know what it is and what to avoid. However,

29:22

the sort of boutique side of it,

29:24

like in a restaurant, having to say, like, I'm

29:26

gluten free and I don't know like that

29:29

just was very hard for me to kind of navigate

29:32

without feeling that sort of like kind

29:34

of high maintenance aspect just really sucks.

29:37

But also I think that that's fueled

29:39

by the misconception that it is

29:42

an acquired or an

29:44

elective.

29:45

Disease completely, And there

29:47

are many people who just decide

29:49

not to eat gluten and it makes them feel

29:51

better. And there are many people who have a gluten

29:54

intolerance which isn't Celiac disease and

29:56

they're very uncomfortable eating gluten.

29:58

So it's not that different. But

30:00

I mean, having been a waitress, I

30:02

totally understand the annoyance

30:05

and I also completely respect

30:07

everybody's you know, what they want to eat.

30:09

You feel extra, you feel I'm.

30:11

Feel extra, or even going to a friend's

30:13

dinner party, you know, and then not really eating

30:15

the food. And I don't mean to be rude

30:18

at all, you know what I mean, But it's like,

30:20

I just don't want to be sick.

30:22

Her sister Carrie couldn't agree more.

30:25

I think a lot of people are gluten

30:27

intolerant, but they don't have

30:30

this autoimmune disease that when you

30:32

eat gluten you strip your guts.

30:35

So though restaurants

30:37

have gotten much better about listing

30:39

allergens or you know, does anybody

30:41

in your party have an allergen? I

30:43

still think there's a bit of eye rolling when

30:46

I say, oh, I have a gluten allergy, you

30:49

know, and other people at the table might go, yeah,

30:51

well, you know that's

30:53

chic.

30:54

You know, it

30:56

may sound chic, but the repercussions

30:59

are anything but glamorous.

31:01

Now, if I get glutened, even

31:04

after being gluten free maybe a year

31:06

and a half. The first time, I don't even remember

31:08

what I had, but I got sick. I

31:11

was like, what is this? But in

31:13

one weird way, it was gratifying to

31:16

know that, yes, the doctor

31:18

is correct. This is poison for me,

31:21

you know what I mean? Like you call it getting

31:23

glutent, yes, getting glutened,

31:26

I mean it goes away. Is very much like food

31:28

poisoning. You know, it's like you're just in

31:30

the bathroom sort of on the floor

31:33

for three hours and then

31:36

you're wiped out, but you're fine.

31:38

But it's certainly not an elective

31:41

or an acquired reaction. It knows

31:43

a very physical and that's

31:45

severely So

31:47

what do you hope people take away from all of

31:49

this.

31:50

I hope that people just

31:53

asked to get a celia test if there's any

31:55

any remote doubt, even

31:58

if it's like I feel fine, but my

32:01

sibling who's never been tested for Celiac

32:03

disease, seems like maybe they have it or

32:05

not. Even it's just a simple blood test, just check

32:07

it off on the next test. It's

32:10

super super simple, and

32:12

just to know could prevent a lot of things

32:14

down the road once either it's

32:17

because of the small intestine being super

32:19

damaged or things that go on, like

32:21

calcium can get depleted, vitamin D

32:23

gets messed up. You know, there's all sorts of things

32:25

that affect people differently, but it

32:28

does seem like there's far more awareness of

32:31

it now among family practitioners.

32:33

You can find out more on Celiac disease

32:36

and doctor Green's work on Columbia's

32:38

Celiaccenter website Coeliac

32:40

Disease Center dot Columbia

32:42

dot edu. You can also find

32:45

doctor Green's book Coeliac Disease

32:47

A Hidden Epidemic, along with Eliza

32:50

Minette prices incredible catalog

32:52

of work wherever books are

32:54

sold.

32:57

My name is Eliza mine

32:59

Price and I was diagnosed

33:01

with Ciliac disease when I was thirty nine

33:03

years old.

33:06

On next week's season finale of

33:08

Symptomatic, Lauren is a professional

33:11

dancer who loves to share her passion for

33:13

fitness and dance, but she

33:15

notices her body, which once used

33:17

to float across the floor, is now

33:19

having trouble keeping up.

33:21

I thought I broke my toe, and I

33:24

said to my husband, I said, something's

33:26

wrong.

33:27

I don't remember breaking my foot. It

33:29

is bad to the point where I cannot move.

33:31

Lauren Harry's to uncover the undiagnosed

33:34

illness causing her slow physical decline,

33:37

all while juggling the responsibilities of

33:39

being a new parent and continuing

33:41

to inspire the next generation of

33:43

dancers. That's

33:47

it for this episode of Symptomatic. Thank

33:49

you for listening. What did you think of this

33:51

episode? We would love to hear from you. Send

33:53

us your thoughts or share a medical mystery of your

33:55

own at Symptomatic at iHeartMedia

33:58

dot com and please don't forget to

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rate and review this podcast wherever

34:02

you're listening. Symptomatic

34:05

Medical Mystery Podcast is a production

34:07

of Ruby Studio from iHeartMedia.

34:10

Our show is hosted by me Lauren Bret

34:12

Pacheco. Executive producers

34:14

are Matt Romano and myself. Our

34:16

EP of post production is James

34:19

Foster. Our producers are Sierra

34:21

Kaiser and John Irwin. And this episode

34:23

was researched by Diana Davis