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