WEBVTT - Case #15: Eliza 0:00:04.200 --> 0:00:07.080 Even if you wanted to feel better or muscle through it, 0:00:07.200 --> 0:00:10.520 you just can't. Really, it's not just nausea. It's like 0:00:11.240 --> 0:00:13.920 almost that kind of fear of the pain. 0:00:14.720 --> 0:00:17.960 I think it was after she had children, she said, 0:00:17.960 --> 0:00:20.520 do you ever get this kind of cramp under your 0:00:20.600 --> 0:00:24.759 right rib? I was stemy, you know, it sounded muscular 0:00:24.800 --> 0:00:25.040 to me. 0:00:25.840 --> 0:00:29.520 Some people deny their symptoms until they're on the deathbed. 0:00:30.160 --> 0:00:33.560 Other people I've seen the doctor all the time about symptoms. 0:00:33.960 --> 0:00:36.760 It just felt like a burning, almost like an ice 0:00:36.800 --> 0:00:40.400 cube was in there. Both really cold and you know 0:00:40.440 --> 0:00:42.160 what I mean, that searing kind of burn. 0:00:48.320 --> 0:00:51.920 How terrifying would it be to fight an unknown enemy, 0:00:52.440 --> 0:00:56.280 one you didn't recognize and didn't see coming. What if 0:00:56.320 --> 0:01:00.400 that enemy was coming from within a disease that even 0:01:00.520 --> 0:01:06.160 doctors couldn't identify. Nearly half of all Americans suffer from 0:01:06.240 --> 0:01:10.920 some chronic illness, and many struggle for an accurate diagnosis. 0:01:12.000 --> 0:01:19.840 These are their stories. Lauren Bribe Pacheco and this is symptomatic. 0:01:32.880 --> 0:01:36.440 Eliza Minette Price is a critically acclaimed writer who's written 0:01:36.480 --> 0:01:39.600 three novels and whose work has appeared in a variety 0:01:39.640 --> 0:01:43.679 of magazines, all while juggling all the responsibilities of being 0:01:43.720 --> 0:01:48.360 an active mother of four. I, even as a little kid, 0:01:48.640 --> 0:01:52.200 would read a lot and take the kitchen list or 0:01:52.200 --> 0:01:55.120 whatever and turn it sideways to make it look like 0:01:55.160 --> 0:01:58.520 a book and write a little story. But as you 0:01:58.560 --> 0:02:01.800 get to know her, she's pretty unassuming about her success. 0:02:02.720 --> 0:02:07.200 She doesn't shine the light on herself too much, and 0:02:07.800 --> 0:02:10.880 she's very modest about what she does. And oh, I 0:02:10.919 --> 0:02:13.079 don't really know how I did it. I don't think 0:02:13.120 --> 0:02:15.440 she really realizes how talented she is. 0:02:16.400 --> 0:02:19.680 That was Eliza's sister, Carrie. They grew up together in 0:02:19.800 --> 0:02:23.360 a big family, two of seven kids, which grew to 0:02:23.480 --> 0:02:27.079 ten when our father remarried. Needless to say, it often 0:02:27.080 --> 0:02:30.080 made it easy for illnesses and injuries to fly under 0:02:30.120 --> 0:02:30.560 the radar. 0:02:31.280 --> 0:02:33.200 I think in a big family there is the sort 0:02:33.200 --> 0:02:35.600 of getting lost in the shuffle, Like I don't know 0:02:35.639 --> 0:02:37.800 why I'm limping all the time. You know, It's like 0:02:37.960 --> 0:02:40.600 you might have broken your foot, but I don't know. 0:02:40.639 --> 0:02:46.200 It's like, how would you describe Eliza to someone who 0:02:46.280 --> 0:02:47.080 doesn't know her. 0:02:47.600 --> 0:02:48.799 Oh my gosh. 0:02:49.280 --> 0:02:53.960 So I'm trying to keep it unemotional. She's the youngest 0:02:54.000 --> 0:02:56.919 of seven. There were six of us who were very 0:02:56.960 --> 0:03:00.440 close in age. And then a six year gap, and 0:03:00.480 --> 0:03:03.880 then my mother had Eliza, so I was fourteen. So 0:03:04.600 --> 0:03:07.959 to me, she's almost more like a daughter than a sister. 0:03:08.760 --> 0:03:17.120 She is just one of the most kind, steady, positive, perceptive, loving, 0:03:17.560 --> 0:03:20.080 you know, I just can't say enough nice things about her. 0:03:20.080 --> 0:03:22.040 Honestly, she's one of my favorite people. 0:03:24.000 --> 0:03:27.840 The big family mentality meant there was an understanding that 0:03:27.960 --> 0:03:31.040 not every cut or scrape would be coddled, and that 0:03:31.240 --> 0:03:34.720 some smaller health issues were just shrugged off. But there 0:03:34.960 --> 0:03:38.360 was an unbreakable connection shared amongst the siblings. 0:03:39.040 --> 0:03:42.240 You know, not that everything comes back to losing my mom, 0:03:42.400 --> 0:03:46.280 but there was both a loneliness in our house and 0:03:46.520 --> 0:03:51.080 a total togetherness with this tragedy that happened. And I 0:03:51.120 --> 0:03:53.000 did feel like, well, I have my siblings, you know, 0:03:53.040 --> 0:03:54.920 I always have them. 0:03:55.240 --> 0:03:57.680 If I'm not mistaken, your mom passed in just a 0:03:57.720 --> 0:03:59.200 tragic car accident. 0:03:59.680 --> 0:04:01.520 Yes, she died in a car crash. 0:04:01.960 --> 0:04:05.960 Eliza was in second grade and I was six months 0:04:05.960 --> 0:04:07.840 out of college working in New York. 0:04:08.600 --> 0:04:11.000 So she was seven and I was twenty two. 0:04:11.920 --> 0:04:14.760 And right after that I went home for a chunk 0:04:14.760 --> 0:04:18.840 of time helping our dad and Eliza, and it was 0:04:18.920 --> 0:04:23.960 just a really confusing, crazy time, and at the bottom 0:04:24.040 --> 0:04:27.240 of it was this beautiful little blonde girl who had 0:04:27.279 --> 0:04:28.159 been the apple. 0:04:27.880 --> 0:04:29.440 Of my mother's eye. 0:04:29.480 --> 0:04:33.760 And I just really wanted to make sure that whatever 0:04:33.839 --> 0:04:36.480 I could do in my life to make her life nicer, 0:04:36.640 --> 0:04:37.200 I would do. 0:04:38.800 --> 0:04:42.560 Her mother's passing was undoubtedly a formative moment for Eliza 0:04:42.800 --> 0:04:46.720 and her family. Their sibling bond was something Eliza cherished 0:04:46.880 --> 0:04:50.040 and wanted to replicate in her own family. But long 0:04:50.120 --> 0:04:54.359 before Eliza's journey as a mother even began, unexplained abdomen 0:04:54.440 --> 0:04:57.640 pain started to creep up on her first boiling over 0:04:57.760 --> 0:05:02.640 when she studied abroad in France as a teen. Looking back, 0:05:03.360 --> 0:05:06.680 if you have to think about the first time now 0:05:06.760 --> 0:05:10.880 you realize something was wrong, but you just basically internalized 0:05:10.880 --> 0:05:13.839 it and soldiered ahead, when was the first time you 0:05:13.880 --> 0:05:16.560 remember having symptoms of any sort? 0:05:17.279 --> 0:05:22.320 I mean, the biggest, most obvious one was in high school. 0:05:22.400 --> 0:05:25.279 I spent a year abroad in France, and I was 0:05:25.279 --> 0:05:26.520 living with the French family. 0:05:27.279 --> 0:05:30.839 Carrie remembers the start of Eliza's difficulties really well too. 0:05:31.520 --> 0:05:33.800 Junior year, she was probably fifteen years old. She went 0:05:33.839 --> 0:05:36.240 to boarding school when she was thirteen, which is insane, 0:05:36.360 --> 0:05:38.520 But I think it was just that one episode. 0:05:39.440 --> 0:05:42.280 Was it just like a stomach ache or was it 0:05:42.320 --> 0:05:44.000 severe gastro intestinal? 0:05:44.480 --> 0:05:48.000 It was like I could have gone to the bathroom diarrhea. 0:05:48.440 --> 0:05:51.599 I mean, you know, I also had a cigarette because 0:05:51.600 --> 0:05:53.400 I was a smoker at the time, like a good 0:05:53.560 --> 0:05:56.960 fifteen year old in nineteen eighty five. So I was 0:05:56.960 --> 0:05:58.880 waiting at the bus and I thought, Okay, maybe the 0:05:58.960 --> 0:06:01.200 cigarette is making myself. Do I feel sick? Do I 0:06:01.240 --> 0:06:03.839 need to find a toilet? I also think I might faint, 0:06:04.080 --> 0:06:07.040 Like I just felt extreme food poisoning enough that I 0:06:07.200 --> 0:06:10.599 left the bus stop started walking back to the house 0:06:10.640 --> 0:06:12.960 that I was living in, and I think I might 0:06:13.000 --> 0:06:16.240 have even kind of passed out, But I remember playing 0:06:16.279 --> 0:06:18.120 it down. It's like, oh, I ate too much fiber. 0:06:19.320 --> 0:06:21.120 That's what I sort of thought in my mind, like 0:06:21.760 --> 0:06:22.440 that's all. 0:06:22.760 --> 0:06:25.160 That must have been scary, though, yeah, it. 0:06:25.080 --> 0:06:27.799 Was kind of scary, but I also just thought, Okay, 0:06:27.880 --> 0:06:30.320 I'm just this is a stomach bug. I don't know 0:06:30.360 --> 0:06:34.000 what is going on. Around that same time, one of 0:06:34.000 --> 0:06:37.240 my best friends, she and I both had little red 0:06:37.279 --> 0:06:41.320 dot rashes on us. You know, we thought is it ringworm? 0:06:41.400 --> 0:06:43.440 Like what is this? You know, you didn't have Google then, 0:06:43.560 --> 0:06:45.279 so it was more like word of mouth, you know, 0:06:45.360 --> 0:06:48.320 like what is that? So she and I both went 0:06:48.360 --> 0:06:50.960 to a dermatologist together, a French dermatologist. 0:06:51.560 --> 0:06:54.919 Can you just describe the rash? And was it you 0:06:54.960 --> 0:06:56.320 thought identical to your friend? 0:06:57.040 --> 0:07:00.520 Just little red dots with sort of a flakin on top. 0:07:00.960 --> 0:07:04.560 But to a dermatologist's eye, hers looked obviously like some 0:07:04.720 --> 0:07:09.520 virus and mine looked like, I guess, classic psoriasis. So 0:07:09.880 --> 0:07:15.040 that little episode with my stomach and the onset of psoriasis, 0:07:15.280 --> 0:07:17.720 which I kind of had on and off throughout my 0:07:17.800 --> 0:07:21.200 teen years and my life in general, that I look 0:07:21.480 --> 0:07:26.120 back to as sort of an obvious time of something 0:07:26.160 --> 0:07:27.080 different going on. 0:07:28.240 --> 0:07:31.880 While an early diagnosis of psoriasis helped to explain the 0:07:31.920 --> 0:07:35.960 skin rashes, it didn't really explain away her stomach issues. 0:07:36.520 --> 0:07:40.320 This was the beginning of her overwhelming but also very 0:07:40.360 --> 0:07:44.040 sporadic episodes, making it hard to notice a pattern of 0:07:44.040 --> 0:07:48.160 potential triggers or causes. When you got back to the States, 0:07:48.240 --> 0:07:52.840 did your stomach issues get better or did you just 0:07:53.040 --> 0:07:53.920 learn to live with them? 0:07:54.360 --> 0:07:57.640 Yeah, so my stomach issues after that weird episode, I 0:07:57.720 --> 0:08:01.320 didn't really notice anything different, you know, I wasn't feeling 0:08:01.400 --> 0:08:04.600 sick to my stomach necessarily, or if I did, I 0:08:04.640 --> 0:08:07.760 just would attribute it to eating something with high fiber, 0:08:08.000 --> 0:08:11.600 or you know, I had too much coffee or whatever. 0:08:11.720 --> 0:08:16.160 But I wasn't struggling or noticing my stomach. The skin, however, 0:08:16.440 --> 0:08:19.320 was definitely part of my teenage years. I mean not 0:08:19.560 --> 0:08:22.560 it sometimes would just only be on my elbows or knees. 0:08:22.600 --> 0:08:25.280 I'd have little plaques of psoriasis, but sometimes it would 0:08:25.360 --> 0:08:28.480 kind of flare up and sort of be semi dots 0:08:28.480 --> 0:08:32.480 all over my body. So that was part of life. 0:08:32.559 --> 0:08:36.040 During her teenage years, the time already filled with anxiety 0:08:36.240 --> 0:08:39.920 around what people think of you, her plaquesoriasis became more 0:08:39.920 --> 0:08:43.520 of a physical esthetic concern. But as she got older, 0:08:43.600 --> 0:08:48.360 her stomach pains started to return, although they were manifesting differently. 0:08:49.880 --> 0:08:52.800 When was the next time you remember something sticking out 0:08:52.920 --> 0:08:55.600 as noteworthy in terms of a health issue. 0:08:55.600 --> 0:08:59.240 Then, well, I do remember I was working at. 0:08:59.200 --> 0:09:03.200 NBC, so at this point you're in your twenties. 0:09:03.080 --> 0:09:06.480 Very young twenties. I do remember having kind of a 0:09:06.600 --> 0:09:12.200 distinct like burning sensation in kind of above my stomach, 0:09:12.360 --> 0:09:16.280 like right under my right rib, on my sort of 0:09:16.360 --> 0:09:20.360 center whatever that bone is, the breastplate there, like it 0:09:20.400 --> 0:09:23.400 just felt like a burning almost like an ice cube 0:09:23.520 --> 0:09:26.719 was in there. Both really cold and you know what 0:09:26.800 --> 0:09:27.240 I mean, that. 0:09:27.240 --> 0:09:30.160 Kind of burn, a searing kind of pain. 0:09:30.800 --> 0:09:33.560 Yes, that sort of would go back to my back almost, 0:09:34.240 --> 0:09:37.840 So it wasn't so specific and hurting like ah, you know, debilitating. 0:09:37.880 --> 0:09:40.600 It was just kind of when I would be quiet 0:09:40.679 --> 0:09:43.240 and working, I would notice it was there. 0:09:43.880 --> 0:09:45.160 What did you attribute that to? 0:09:45.960 --> 0:09:48.760 Well, I went to just a normal GP doctor and 0:09:48.800 --> 0:09:51.160 they just thought, oh, that's acid reflux or you know. 0:09:51.200 --> 0:09:54.120 And I had never been taking anything, you know. I 0:09:54.160 --> 0:09:56.079 wouldn't go to the store like, oh, I have such 0:09:56.120 --> 0:09:59.160 bad gas or I'm so. I mean, I'd get mildly 0:09:59.240 --> 0:10:02.080 bloated from time to time, and I thought, is it 0:10:02.120 --> 0:10:04.880 an ulcer? Just the word ulcer felt like that fit 0:10:05.240 --> 0:10:09.880 because it burned, you know. And I never got any 0:10:10.400 --> 0:10:11.840 tests done really. 0:10:12.920 --> 0:10:15.640 At the time, Eliza was starting her career in New 0:10:15.720 --> 0:10:18.640 York City. She tried to push through the painful and 0:10:18.679 --> 0:10:22.000 distracting flare ups, but her attention is diverted when she 0:10:22.120 --> 0:10:25.040 was given more insight into possible complications. 0:10:27.640 --> 0:10:30.320 Whenever I would try to go give blood at thirty 0:10:30.400 --> 0:10:32.800 Rock they would tell me that they couldn't take it 0:10:32.840 --> 0:10:36.040 because I'm anemic, and I thought anemic, you know, and 0:10:36.080 --> 0:10:38.400 I just thought, okay, I'm a working girl in the city, 0:10:38.640 --> 0:10:40.880 smoked cigarettes, and you know, I just thought I was 0:10:40.920 --> 0:10:44.640 anemic because I didn't eat perfectly, or because I was 0:10:44.679 --> 0:10:47.839 female or something. I don't know. I didn't worry about it. 0:10:48.520 --> 0:10:52.680 I also wasn't getting my period. At one point, I thought, oh, 0:10:52.720 --> 0:10:54.400 it's because I went off the pill, you know, and 0:10:54.440 --> 0:10:56.520 it can just take a while. But it took quite long, 0:10:57.240 --> 0:10:58.960 long enough that I went to go see like a 0:10:59.000 --> 0:11:03.800 pituitary land specialist, you know, like a hormone person, and 0:11:03.880 --> 0:11:06.480 he did some blood tests and he said, you're high 0:11:06.520 --> 0:11:10.400 in prolactin, like the hormone that you breastfeed with. So 0:11:10.640 --> 0:11:14.360 that was bizarre, but it explained why my period wasn't coming. 0:11:14.960 --> 0:11:18.520 How did the doctor explain the elevated levels of prolactin, 0:11:19.160 --> 0:11:22.680 I mean, since you weren't pregnant and you hadn't given birth. 0:11:23.080 --> 0:11:24.720 I think he said, just go back on the pill, 0:11:24.880 --> 0:11:26.760 or eventually it'll come back. I don't know what to 0:11:26.840 --> 0:11:27.199 tell you. 0:11:27.800 --> 0:11:33.440 So prolactin anemia and ongoing stomach issues and you just 0:11:33.640 --> 0:11:35.960 kind of learned to live with all of the above. 0:11:36.640 --> 0:11:39.520 Yeah, none of them were debilitating. The one that bothered 0:11:39.559 --> 0:11:42.080 me the most was sort of the achy burn in 0:11:42.120 --> 0:11:44.520 my stomach that wasn't there all the time. It's like, 0:11:44.600 --> 0:11:46.840 you know, when you're maybe it was there all the time, 0:11:46.880 --> 0:11:48.559 but I was so used to it that I only 0:11:48.600 --> 0:11:51.480 noticed it when I was tired. Once the doctor had 0:11:51.520 --> 0:11:53.360 said it's acid, I thought, oh, it's just acid. 0:11:54.679 --> 0:11:58.760 But as unusual as eliza symptom seemed, they were more 0:11:58.800 --> 0:12:02.840 than familiar to her older sister Carrie. You know, it's 0:12:02.840 --> 0:12:05.000 interesting too, because you were experiencing a lot of the 0:12:05.000 --> 0:12:08.280 same symptoms that she did, in terms of the anemia 0:12:08.320 --> 0:12:11.480 and the kind of strange, random pain, and in a 0:12:11.559 --> 0:12:16.599 strange way, within a sibling set, when you have shared symptoms, 0:12:17.080 --> 0:12:21.319 it almost dismisses them, it normalizes them. 0:12:21.880 --> 0:12:23.960 Yeah, and I think I did say that. 0:12:24.000 --> 0:12:26.960 We'd talk about everything, and I'd say, oh, that's normal, 0:12:26.960 --> 0:12:28.760 I had that, or yeah I had that too. 0:12:29.360 --> 0:12:31.280 You know, I didn't know what was going on. 0:12:31.800 --> 0:12:35.360 So in trying to give her comfort, you guys are 0:12:35.360 --> 0:12:39.360 basically perpetuating the fact that you're living with something that's 0:12:39.559 --> 0:12:44.640 not diagnosed very much. So, yeah, things had drastically changed 0:12:44.760 --> 0:12:48.640 after Eliza had her first child, Rowan. Her flare ups 0:12:48.720 --> 0:12:53.160 didn't accelerate in frequency, but rather in intensity, and that 0:12:53.320 --> 0:12:57.360 left her worried about the worst case scenario, being overwhelmed 0:12:57.360 --> 0:12:59.440 by a flare up while watching her young son. 0:13:00.160 --> 0:13:03.080 After having grown in New York City, you know, I 0:13:03.280 --> 0:13:05.200 felt like I was going to pass out, the same 0:13:05.320 --> 0:13:07.800 thing like in France, Like not just normal sitting on 0:13:07.840 --> 0:13:11.480 the toilet, but like I think I'm gonna fall and 0:13:11.520 --> 0:13:14.679 I might hit my head. So I called the doctor 0:13:14.720 --> 0:13:16.679 and he's like, oh, what trouble are you up to now? 0:13:16.679 --> 0:13:20.320 Because I was only about two weeks postpartum and I 0:13:20.360 --> 0:13:22.440 was alone in the apartment with a baby, and I 0:13:22.480 --> 0:13:25.720 didn't want to like pass out while Rowan was still 0:13:25.760 --> 0:13:29.560 sleeping in his nap And the doctor said, well, I'm 0:13:29.640 --> 0:13:32.040 bet you're fine, but it could be a blood plot 0:13:32.160 --> 0:13:34.560 or you know, like whatever, like since it was all new. 0:13:35.080 --> 0:13:37.520 And then I felt better. I mean I felt like 0:13:37.520 --> 0:13:39.640 i'd been through the ringer, like I had gotten sick. 0:13:40.280 --> 0:13:44.600 Would you categorize it as extreme lightheadedness or a kind 0:13:44.640 --> 0:13:48.160 of like wave of nausea? What did that feel like 0:13:48.240 --> 0:13:49.880 when you think you were going to pass out. 0:13:50.400 --> 0:13:52.160 I mean, all I can kind of liken it to 0:13:52.400 --> 0:13:54.760 is severe food poisoning, Like when you feel like you 0:13:54.800 --> 0:13:57.760 can't get up. You can't, like even if you wanted 0:13:57.800 --> 0:14:00.880 to feel better or muscle through, it just can't. Really, 0:14:00.880 --> 0:14:04.360 you've got to be near a toilet. It's not just nausea. 0:14:04.480 --> 0:14:08.240 It's like almost that kind of fear of the pain. 0:14:09.040 --> 0:14:12.360 Around this point, Eliza and her husband Eric moved their 0:14:12.400 --> 0:14:16.560 young family to the suburbs. Here's her sister Carrie's reflection 0:14:16.920 --> 0:14:17.600 of that time. 0:14:18.320 --> 0:14:21.400 I was worried that she didn't have enough help. You know, 0:14:21.480 --> 0:14:24.640 our mother wasn't around, her siblings, didn't live down the street. 0:14:25.360 --> 0:14:29.600 And whenever I brought that up, she would say, well, 0:14:29.680 --> 0:14:32.120 Eric's usually home by three or four, so I have 0:14:32.200 --> 0:14:33.120 two pairs of hands. 0:14:33.680 --> 0:14:37.479 Do you recall her complaining about anything in particular. 0:14:37.920 --> 0:14:41.120 I think it was after she had children. She said, 0:14:41.160 --> 0:14:43.720 do you ever get this kind of cramp under your 0:14:43.800 --> 0:14:44.400 right rib? 0:14:45.320 --> 0:14:46.280 And I said no. 0:14:47.240 --> 0:14:48.160 I was stymied. 0:14:48.160 --> 0:14:50.320 I thought, well, maybe she's got you know, some people 0:14:50.360 --> 0:14:53.080 get stitches more than others, or you know, it sounded 0:14:53.160 --> 0:14:54.000 muscular to me. 0:14:54.840 --> 0:14:59.480 While manifesting differently. Carrie was also having significant health issues 0:14:59.560 --> 0:15:02.280 that were in the way of her life. It would 0:15:02.280 --> 0:15:06.040 be their paralleled symptoms and Carrie support that would hold 0:15:06.120 --> 0:15:08.920 the key to figuring out what had been plaguing Eliza 0:15:09.120 --> 0:15:15.360 for over fifteen years. We'll be right back with Symptomatic, 0:15:15.840 --> 0:15:23.320 a Medical Mystery Podcast. Now back to Symptomatic a Medical 0:15:23.360 --> 0:15:31.840 Mystery Podcast. Eliza Minette Price had been having infrequent but 0:15:31.920 --> 0:15:35.120 intense GI flare ups for over a decade. They had 0:15:35.160 --> 0:15:37.680 progressed to the point where she was scared she might 0:15:37.720 --> 0:15:40.760 pass out while watching her young children. On top of that, 0:15:41.200 --> 0:15:46.479 there were two seemingly unrelated diagnoses of plaque psoriasis and anemia. 0:15:47.080 --> 0:15:50.400 Eliza and her doctors thought they were each individual issues 0:15:50.440 --> 0:15:54.400 to be treated separately. That was until her sister Carrie's 0:15:54.440 --> 0:16:06.000 GI issues started getting worse. So, Carrie, when do you 0:16:06.400 --> 0:16:11.200 remember your health issues manifesting in such a way that 0:16:11.280 --> 0:16:14.840 you decided I need to get help or look into 0:16:14.880 --> 0:16:17.760 this And how did they manifest themselves? 0:16:18.640 --> 0:16:22.600 I probably had diarrhea more than was normal, but I 0:16:22.640 --> 0:16:24.080 didn't really realize that. 0:16:24.520 --> 0:16:26.120 I just thought that's the way I am. 0:16:27.560 --> 0:16:30.440 I had two babies in my late thirties and then 0:16:30.440 --> 0:16:33.000 one when I was forty one, and by the time 0:16:33.040 --> 0:16:35.480 I was forty five. I was really tired and I 0:16:35.520 --> 0:16:40.480 went to my GP and said, I feel really depleted 0:16:41.160 --> 0:16:44.320 and tired, and she said, well, it's perimenopause and a 0:16:44.360 --> 0:16:46.880 lot of women I know feel this way, and I 0:16:46.920 --> 0:16:50.920 can prescribe you an antidepressant. And I said, but I'm 0:16:50.920 --> 0:16:56.120 not depressed. I feel depleted, and she sort of said, well, 0:16:56.200 --> 0:16:58.440 I would try it. It works for a lot of people. 0:16:59.000 --> 0:17:02.680 So I didn't because I wasn't depressed. Here's Eliza's take. 0:17:03.320 --> 0:17:06.040 I can remember her saying, you know, I feel like 0:17:06.040 --> 0:17:09.040 there are knives in my stomach, and I'd be like, ooh, 0:17:09.200 --> 0:17:11.560 that sounds bad, Like I'm glad I don't feel that way, 0:17:11.600 --> 0:17:13.840 even though I guess maybe I did it, you know, 0:17:14.000 --> 0:17:16.879 but like you're saying, it's like a that's not me. 0:17:17.840 --> 0:17:20.000 And at the time, she was starting to think she 0:17:20.080 --> 0:17:20.720 had an ulcer. 0:17:21.400 --> 0:17:24.840 Carrie did not have an ulcer, but her doctor noticed 0:17:24.880 --> 0:17:29.560 these subtle symptomatic clues piling up. It was the observation 0:17:29.680 --> 0:17:32.959 of something unrelated to her symptoms that served as the 0:17:33.040 --> 0:17:36.439 final piece allowing everything to fall into place. 0:17:37.440 --> 0:17:40.720 And I went to the Gastrokuy when I got home, 0:17:40.960 --> 0:17:44.879 explained my symptoms. I was wearing a small cross, and 0:17:45.000 --> 0:17:48.560 he said, do you have any Irish blood? And I said, 0:17:48.600 --> 0:17:51.639 my mother is all Irish. And he said, you know, 0:17:51.720 --> 0:17:53.480 I think I know what might be wrong with you. 0:17:53.720 --> 0:17:56.119 Would you be willing to fast from midnight tonight and 0:17:56.119 --> 0:17:59.200 I can. I'm doing endoscopies tomorrow. He said, I need 0:17:59.240 --> 0:18:01.680 to look down to your small intestines and see what's 0:18:01.720 --> 0:18:05.800 going on. I said, okay, so did it. Called me 0:18:05.840 --> 0:18:07.960 the next morning and he said, you have Celiac disease. 0:18:08.160 --> 0:18:10.800 Don't go online, come in to see me tomorrow. 0:18:11.520 --> 0:18:16.239 Carrie, who's fourteen years older, gets diagnosed with Silly Act 0:18:16.240 --> 0:18:18.399 disease and reaches out to all of you guys. 0:18:18.640 --> 0:18:20.240 Yeah, what's your initial thought? 0:18:20.600 --> 0:18:22.000 Did you rush to the doctor? 0:18:22.600 --> 0:18:25.160 And I did not know. At this point. I had 0:18:25.160 --> 0:18:28.280 four little kids, the youngest one was probably two at 0:18:28.320 --> 0:18:31.600 the time. No, I didn't because I also thought I'm 0:18:31.680 --> 0:18:35.640 not ill at my stomach and gluten. I mean at 0:18:35.680 --> 0:18:38.080 the time, I didn't even know what is this gluten. 0:18:38.840 --> 0:18:42.960 Luckily, as the eldest in their large family, Carrie was 0:18:43.080 --> 0:18:46.920 quite comfortable pressuring her younger siblings into getting tested. 0:18:47.760 --> 0:18:50.520 And I'm like sort of clutching, going, You've got to 0:18:50.560 --> 0:18:53.680 do this you guys. You know my voice is like, Okay, 0:18:53.880 --> 0:18:55.560 that's Carrie the boss. 0:18:55.840 --> 0:18:58.520 I love that. So you kind of stepped into the 0:18:58.640 --> 0:19:03.880 role of doctor mom for your siblings. Yes, And after 0:19:03.920 --> 0:19:07.760 a year or so, Carrie's persistent pressure paid off. 0:19:08.680 --> 0:19:11.240 So it probably wasn't that long till I had a 0:19:11.359 --> 0:19:13.879 check up. But this was a checkup at my normal GP. 0:19:14.920 --> 0:19:16.800 And I said, could you also when you're doing the 0:19:16.840 --> 0:19:19.000 blood work, could you test me for Celiac disease because 0:19:19.000 --> 0:19:21.440 my sister just got diagnosed. And her doctor said, tell 0:19:21.440 --> 0:19:24.000 all that your siblings to all get checked out. It's 0:19:24.440 --> 0:19:28.520 heavily hereditary. And he said, oh, you don't have that disease. 0:19:28.560 --> 0:19:30.679 And I said, well, you know, could you test me? 0:19:31.240 --> 0:19:34.840 He said, can you eat a bagel? And I said, 0:19:35.200 --> 0:19:38.080 I absolutely can eat a bagel. He said, well, then 0:19:38.119 --> 0:19:39.080 you don't have that disease. 0:19:39.720 --> 0:19:43.760 Not exactly a scientific means of ruling out a disease. 0:19:44.000 --> 0:19:46.480 No, And looking back, I realized I could do a 0:19:46.480 --> 0:19:48.439 lot of things. I mean, I could have lived my 0:19:48.640 --> 0:19:52.679 entire life probably eating bagels and pasta and living the 0:19:52.680 --> 0:19:56.080 way that I was living. And then he was very dismissive, 0:19:56.600 --> 0:19:59.680 not super rude, but just dismissive, and I thought, yeah, 0:19:59.760 --> 0:20:02.920 I or whatever. He's a doctor. And then the next 0:20:02.960 --> 0:20:05.600 week one of the nurses called me up and said, 0:20:05.680 --> 0:20:09.000 you do have that disease. I said, what disease you know? 0:20:09.160 --> 0:20:10.840 And she said, you have Celiac. 0:20:12.520 --> 0:20:16.359 The blurry picture of her individual symptoms was now coming 0:20:16.400 --> 0:20:19.840 into full focus. The fifteen year old Eliza studying abroad 0:20:19.840 --> 0:20:24.320 in France, was overloading on croissants and baguettes, the young 0:20:24.359 --> 0:20:28.240 mother Eliza snacking on toddler leftovers between parenting and work 0:20:28.920 --> 0:20:32.600 at in the psoriasis, and the anemia. It was now 0:20:32.680 --> 0:20:36.320 all starting to make sense. This diagnosis meant Eliza was 0:20:36.359 --> 0:20:41.639 now faced with a major lifestyle change. So, just to 0:20:41.720 --> 0:20:44.480 start us off, if you could give me your name 0:20:44.520 --> 0:20:45.240 and your title. 0:20:45.880 --> 0:20:50.240 So I'm Peter Green, I'm the professor of medicine at 0:20:50.240 --> 0:20:54.399 Columbia University, and I'm the director of the Celiac Disease Center. 0:20:55.040 --> 0:20:58.280 I would love it if you would just define Celiac 0:20:58.400 --> 0:21:00.800 disease because I think a lot of the problem is 0:21:00.840 --> 0:21:06.480 that since gluten has been vilified, that people who say 0:21:06.480 --> 0:21:10.359 they have a gluten sensitivity end up doing a disservice 0:21:10.400 --> 0:21:13.880 to people who have Celiac. Disease because people believe it's 0:21:13.920 --> 0:21:16.000 an elective disease. 0:21:17.400 --> 0:21:24.280 So we currently define coeliac disease as an autoimmune condition. 0:21:25.359 --> 0:21:29.320 That's unique in that we know the environmental precipitant, which 0:21:29.359 --> 0:21:35.480 is glutant, and individuals with Celiac disease have this inflammatory 0:21:35.560 --> 0:21:42.320 condition in their small intestine and systemic symptoms and manifestations 0:21:42.680 --> 0:21:49.480 that respond to gluten withdrawal. So you've got the autoimmune component, 0:21:49.520 --> 0:21:54.199 which is the antibodies, you've got the inflammatory component, and 0:21:54.240 --> 0:21:57.159 you've got villisatrophy, and you've got improvement on a gluten 0:21:57.200 --> 0:21:57.760 free diet. 0:21:59.160 --> 0:22:02.000 Doctor Green is one of the most prominent voices in 0:22:02.040 --> 0:22:05.440 the Celiac community and the guiding force for both Eliza 0:22:05.600 --> 0:22:09.560 and Carrie through their Celiac journeys. Because of how severe 0:22:09.680 --> 0:22:12.719 her episodes could get, Eliza now had to give up 0:22:12.760 --> 0:22:16.200 some of the things she loved most bagels, pizza, pasta, 0:22:16.240 --> 0:22:19.160 all of it. Luckily, Carrie had been living with her 0:22:19.280 --> 0:22:22.520 diagnoses for a while and gladly took her younger sister 0:22:22.680 --> 0:22:27.000 under her wing. So having navigated it just a few 0:22:27.119 --> 0:22:30.560 years before her, you were able to send your cheat 0:22:30.640 --> 0:22:34.080 sheet of texts and emails of what to buy where, 0:22:34.119 --> 0:22:35.879 to shop exactly. 0:22:36.080 --> 0:22:39.080 This kind of toothpaste is good. Don't use a Veno 0:22:39.359 --> 0:22:42.600 oatmeal oil anymore. There's a whole list of things. And 0:22:43.200 --> 0:22:46.639 we're big researchers and we love to share information with 0:22:46.680 --> 0:22:49.720 each other. So she was, you know, keep it coming. 0:22:49.920 --> 0:22:52.040 It wasn't, you know, stop, I don't want to hear 0:22:52.080 --> 0:22:54.680 this anymore. It was like, please tell me what else. 0:22:54.720 --> 0:22:56.480 What's a good kind of pasta, What kind of bread 0:22:56.520 --> 0:22:59.639 do you like? There's a lot of information. Share it 0:22:59.640 --> 0:22:59.960