Chapters
Shownotes Transcript
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. I think it was after she had children. She said, do you ever get this kind of cramp under your right rib? I was stymied. You know, it sounded muscular to me.
Some people deny their symptoms until they're on the deathbed. Other people are seeing the doctor all the time about symptoms. 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. 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. These are their stories. I'm Lauren Bright Pacheco, and this is Symptomatic.
Eliza Minot 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 a book and write a little story. But as you get to know her, she's pretty unassuming about her success.
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. That was Eliza's sister, Carrie. They grew up together in a big family, two of seven kids, which grew to 10 when her father remarried. Needless to say, it often made it easy for illnesses and injuries to fly under the radar.
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. How would you describe Eliza to someone who doesn't know her? Oh, my gosh. So I'm trying to keep it unemotional. She's the youngest of seven. There were six of us who are very close in age.
And then a six-year gap. And then my mother had Eliza. So I was 14. 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. You know, I just can't say enough nice things about her, honestly. She's one of my favorite people.
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. 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. If I'm not mistaken, your mom passed in just a tragic car accident. Yes, she died in a car crash. Eliza was in second grade and I was six months out of college working in New York. So she was seven and I was 22. 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 of my mother's eye. And I just really wanted to make sure that whatever I could do in my life to make her life nicer, I would do.
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. ♪
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?
I mean, the biggest, most obvious one was in high school, I spent a year abroad in France and I was living with a French family. Carrie remembers the start of Eliza's difficulties really well, too. Junior year, she was literally 15 years old. She went to boarding school when she was 13, which is insane. But I think it was just that one episode.
Was it just like a stomach ache or was it severe gastrointestinal? 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 15-year-old in 1985.
So I was waiting at the bus and I thought, okay, maybe the cigarette is making my stomach 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 left the bus stop, started walking back to the house that I was living in. And I think I might've 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. That must have been scary, though. Yeah, it was kind of scary. But I also just thought, OK, I'm just 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, like, what is that?
So she and I both went to a dermatologist together, a French dermatologist. Can you just describe the rash and was it, you thought, identical to your friend? Just little red dots with sort of a flakiness 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 teen years and my life in general, that I look back to as sort of an obvious time of something different going on.
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 learn to live with them? 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 at
The skin, however, 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.
During her teenage years, a time already filled with anxiety around what people think of you, her plaque psoriasis became more of a physical, aesthetic 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 as noteworthy in terms of a health issue then? Well, I do remember I was working at NBC. So at this point, you're in your 20s. Very young 20s. 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 was in there, both really cold and, you know what I mean, that kind of burn. A searing kind of pain. 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. What did you attribute that to? Well,
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 tests done really.
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. Whenever I would try to go give blood at 30 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, OK, I'm a working girl in the city who smokes 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. 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 gland 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 that was bizarre, but it explained why my period wasn't coming.
How did the doctor explain the elevated levels of prolactin? I mean, since you weren't pregnant and you hadn't given birth. I think he said, just go back on the pill or eventually it'll come back. I don't know what to tell you. So prolactin, anemia and ongoing stomach issues. And you just kind of learned to live with all of the above.
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. But as unusual as Eliza's symptoms 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, it almost dismisses them. It normalizes them. Yeah. And I think I did say that we talk about everything and I'd say, oh, that's normal. I had that. Or, yeah, I had that, too.
you know, I didn't know what was going on. 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 left her worried about the worst-case scenario, being overwhelmed by a flare-up while watching her young son. After having Rowan 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 going to 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 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 bet you're fine, but it could be a blood clot 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.
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? 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, you 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.
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. 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. Do you recall her complaining about anything in particular? I think it was after she had children. She said, do you ever get this kind of cramp under your right rib? And I said, no. I was stymied. I thought, well, maybe she's got, you know, some people get stitches more than others or, you know, it sounded muscular to me.
While manifesting differently, Carrie was also having significant health issues that were getting in the way of her life. It would be their paralleled symptoms and Carrie's support that would hold the key to figuring out what had been plaguing Eliza for over 15 years. We'll be right back with Symptomatic, a medical mystery podcast. Now back to Symptomatic, a medical mystery podcast.
Eliza Minot-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 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 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? I probably had diarrhea more than was normal, but I didn't really realize that. I just thought that's the way I am. I had two babies in my late 30s and then one when I was 41.
And by the time I was 45, 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. A lot of women I know feel this way. And I can prescribe you an antidepressant. And I said, but I'm 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. 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. You know, like you're saying, it's like, that's not me. And at the time, she was starting to think she had an ulcer. 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.
And I went to the gastric eye 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 to look down into 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."
Carrie, who's 14 years older, gets diagnosed with celiac disease and reaches out to all of you guys. What's your initial thought? Did you rush to the doctor? I did not. No, 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 thing.
Luckily, as the eldest in their large family, Carrie was quite comfortable pressuring her younger siblings into getting tested. And I'm like sort of clutching going, you've got to do this, you guys. You know, my voice is like, OK, that's Carrie, the boss. I love that. So you kind of stepped into the role of Dr. Mom for your siblings. Yes. And after a year or so, Carrie's persistent pressure paid off.
So it probably wasn't that long till I had a checkup, 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 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, could you test me? 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."
Not exactly a scientific means of ruling out a disease. 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, whatever. He's a doctor. And then the next week,
One of the nurses called me up and said, "You do have that disease." I said, "What disease?" And she said, "You have celiac."
The blurry picture of her individual symptoms was now coming into full focus. The 15-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. Add in the psoriasis and the anemia. It was now 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. So I'm Peter Green. I'm a professor of medicine at Columbia University, and I'm the director of the Celiac Disease Center. 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. Yeah. So we currently define celiac disease as an autoimmune condition that's unique in that we know the environmental precipitant, which is gluten.
And individuals with celiac disease have this inflammatory condition in their small intestine and systemic symptoms and manifestations 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 villus atrophy and you've got improvement on a gluten-free diet.
Dr. 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 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. This kind of toothpaste is good. Don't use Aveeno 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 we're
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 do you like? There was a lot of information shared that way.
My GP was like, avoid this, avoid that. Just don't have pizza. Don't have, you know, but not like be very careful. Gluten lurks in 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 an expert.
who'd written a whole book on it, who was right across the river at Columbia in New York. Enter Dr. Green. Enter Dr. Green. We've been very interested in the quality of life of individuals because we showed that the individuals that are hypervigilant, that knew most about...
The disease knew most about gluten, had a worse quality of life. So somehow we have to get people to tread a middle line in which they're gluten free, but they're not totally preoccupied with it. Like some of the behaviors that we used to encourage, like calling beforehand, going to restaurants, taking your own food,
not going out, etc., are not healthy behaviors. They're actually behaviors that...
predict the development of an eating disorder that are increased in celiac disease. 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 of life.
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's situation.
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. I think that the diagnosis had been suggested but not confirmed. And we confirmed the diagnosis. And she had metabolic abnormalities reflecting her.
you know, the effect of having celiac disease. Like she had quite a marked disorder of her calcium metabolism and had this secondary hyperparathyroidism.
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 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 those with celiac disease are diagnosed. Some people deny their symptoms until they're on the deathbed.
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 generalise in that respect.
Celiac disease, having such a variance in 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 the hereditary nature of celiac disease, Carrie tried to convince Eliza to also get her kids tested. So you end up going to the world's foremost expert, basically, and 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, what happened is I didn't bring them in anywhere until my third, the girl named Tess, 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 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.
Eliza then had all of her kids tested, and three of the four of them tested positive. So her whole family was in 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 disease? And in what way does that complicate it? Well, it does both. So you're correct. Currently, the only management for celiac disease is a gluten-free diet. And the FDA actually has recognized that and has fast-tracked some studies
drug development. And there are different drugs that are being tested, like there's an enzyme that will digest gluten that is being the most advanced with different therapies. There are various therapies and now there are some people 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
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. 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-y 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 of high maintenance aspect just really sucks. Boom!
But also, I think that that's fueled by the misconception that it is an acquired or an elective 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 completely respect everybody's, you know, what they want to eat. You feel extra. You feel high maintenance. You 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. Her sister Carrie couldn't agree more. 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 the 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 have a gluten allergy, you know, and other people at the table might go, yeah, well, you know, that's chic. Yeah.
It may sound chic, but the repercussions are anything but glamorous. Now, if I get gluten, 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? You call it getting glutened. Yes, getting glutened. I mean, it goes away. It's 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. But it's certainly not an elective or an acquired reaction. It is a very physical. And that's severe.
So what do you hope people take away from all of this? I hope that people just ask to get a celiac 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.
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. You can find out more on celiac disease and Dr. Green's work on Columbia's Celiac Center website, celiacdiseasecenter.columbia.edu. You can also find Dr. Green's book, Celiac Disease, A Hidden Epidemic, along with Eliza Minot Price's incredible catalog of work wherever books are sold.
My name is Eliza Minot Price, and I was diagnosed with celiac disease when I was 39 years old. 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.
I thought I broke my toe. And I said to my husband, I said, something's wrong. I don't remember breaking my foot. It is bad to the point where I cannot move. Lauren harries 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 to hear from you. Send us your thoughts or share a medical mystery of your own at symptomatic at iheartmedia.com. And please don't forget to rate and review this podcast wherever you're listening.
Symptomatic, a medical mystery podcast, is a production of Ruby Studio from iHeartMedia. Our show is hosted by me, Lauren Bright Pacheco. Executive producers are Matt 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.
