Ever wondered what happens when romance meets real-life health challenges? In this episode, Dr. Denise Millstine sits down with bestselling author Chloe Liese and gastroenterologist Dr. Lucinda Harris to explore celiac disease through the novel Once Smitten, Twice Shy. Together, they dive into the emotional and social impact of chronic illness, the importance of accurate representation in fiction, and practical knoweldge about celiac disease. This conversation reminds us that health struggles don’t diminish our worth — or our capacity for love.
Ever wondered what happens when romance meets real-life health challenges? In this episode, Dr. Denise Millstine sits down with bestselling author Chloe Liese and gastroenterologist Dr. Lucinda Harris to explore celiac disease through the novel Once Smitten, Twice Shy. Together, they dive into the emotional and social impact of chronic illness, the importance of accurate representation in fiction, and practical knoweldge about celiac disease. This conversation reminds us that health struggles don’t diminish our worth — or our capacity for love.
This episode was made possible by the generous support of Ken Stevens.
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Dr. Denise Millstine:
Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic is celiac disease. Our book is “Once Smitten, Twice Shy” by Chloe Liese. I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine.
I'm so excited about my guests today. Chloe Liese is a “USA Today” bestselling author who writes romantic fiction reflecting her belief that everyone deserves a love story. When not dreaming up her next novel, you'll find her reading, trying new recipes, savoring nature, and soaking up time with her big, beautiful family. Chloe, welcome to the show.
Chloe Liese:
Thanks so much for having me.
Dr. Denise Millstine:
And my colleague, Dr. Lucinda Harris, who's a professor of medicine in the Division of Gastroenterology at the Mayo Clinic in Arizona, where she focuses on celiac disease and disorders of gut brain dysfunction. Lucy, welcome to the show.
Dr. Lucinda Harris:
Thank you so much for having me, Denise. I'm happy to be here.
Dr. Denise Millstine:
“Once Smitten, Twice Shy” is a romance novel of Juliet, a woman recovering from a toxic relationship and managing mixed connective tissue disease alongside celiac disease and Will, a neurodivergent man grappling with social anxiety and familial expectations.
Okay, you both know how “Read. Talk. Grow.” works; we discuss books that portray health topics in an effort to better understand health experiences through story. In this case, we'll focus on celiac disease. Chloe, your characters often have health conditions. What's your inspiration for that?
Chloe Liese:
Well, I love reading romance, romantic fiction. I really fell into reading it most consistently when I became a mom and everything was harder. I was tired, I was more anxious, you know, and I really wanted to look for these stories that brought the comfort of knowing things work out in the end. And I really love that about romance novels still.
But what I didn't find very often, and the more I read the more it sort of bugged me, was people whose lives, their bodies, their brains reflected the people I love just there felt like a bit of a distance from the nitty gritty of human reality. And that's not to say that there were no romance novels doing that, there were, they just weren't very common. Right. And I felt like, I want this, I want, you know, so I tried to keep finding it in books. I tried it here and there, and sometimes the representation was really affirming and lovely. And it was such a comfort and an affirmation to see that part of myself so often left out of romance novels in those novels.
But then there were times that it wasn't handled with like, care, accuracy. And that's hard, you know, researching things outside your experience is really difficult. But all that to say, I'm a big Toni Morrison fan. I'm a literature major, and I ran across this quote of hers that was something along the lines. I always paraphrase because I'm terrible at remembering verbatim, but something like, if there's a book you want to read and you can't find it, you must be the one to write it.
And so again, not saying I've done something totally groundbreaking here, but I really just I took that to heart and I thought, okay, hey, I want to tell stories about love, all kinds of love and connection and relationships. And I want that to be grounded in human experiences that feel like an affirmation that you don't have to hide the parts of yourself that are tricky, that are vulnerable, like health conditions, mental health struggles, chronic illness. You don't have to hide that part of yourself to be loved and seen by your friends, your family, your romantic partner.
So I really just wanted to foreground and celebrate that. And being someone who's very divergent and has a couple chronic health issues, I just really wanted to take the care that I would hope to see anytime I saw a character with something that, you know, reflected my own life or the people I love. And here we are, 11 books later.
Dr. Denise Millstine:
I love, love, love this. This is the part of the inspiration for “Read. Talk. Grow.” is to find these carefully researched threads in so many of these novels that I think the average reader doesn't necessarily lift out and reflect upon. We talked in episode 71 about irritable bowel syndrome with Lucy's colleague, Dr. Tisha Lunsford. And she was so funny talking about how you so rarely see a character in a novel, even have a bowel movement. And it's so true. And yet it's a universal experience. And so, she toowas just so pleased to see a disorder that she focuses on represented in fiction.
Lucy, tell us your reaction to the book and also what it's like to work with patients who have celiac disease and gluten intolerance.
Dr. Lucinda Harris:
Well, I thought the book was great. I love the characters, I love the way they interacted. The celiac disease, you know, which is an autoimmune disorder, is also related to rheumatoid arthritis and disorders of musculoskeletal problems. And I love that Juliet sort of had both conditions. You know, I think it's important to distinguish celiac disease gluten sensitivity, gluten sensitivity people you know, could maybe get a little bit of gluten in their lives and maybe then be slightly symptomatic.
But someone with celiac disease can really kind of go off the charts in terms of what symptoms they might experience. It's kind of interesting, too, that not everybody gets GI symptoms. And sometimes, like Chloe's character Juliet, she had a rash and she presented and joint (unclear). So I thought that was interesting that we brought up kind of the spectrum of what celiac disease can do.
Dr. Denise Millstine:
I just want to emphasize, Lucy, what you just said about the gluten intolerance or sensitivity, I think there are many people I know I encounter and practice who find that symptomatically, they feel quite a bit different when they limit gluten in their diet, but that this is a distinct entity from somebody who has diagnosed celiac disease. And I know we're going to dive into how that diagnosis is made in a little bit.
But Chloe, you've talked about this a little bit. I also want to just talk a minute about including romance novels in the exchange between Will and Juliet. So for listeners who haven't read the book yet, they are both coming to their relationship with some trepidation around their future for romance and some family expectations. And so Juliet actually encourages Will to read romance novels to learn a bit about how to be romantic. Chloe, I love this. I love prescribing books for the purpose of growth. Will you just comment on how important that was to you to include it.
Chloe Liese:
Yeah, I think it connects to what Dr. Harris said too, in that you know, like we have this spectrum, right? Of people who can have celiac, they can have gluten intolerance. We have a spectrum of such like spectrum sensitivity. Then we have the spectrum of what symptoms can present. And I know that at least for me, as someone who I first got diagnosed in college and I had a number of symptoms that would come and go. I, you know, I had just so much I couldn't really make sense of.
Right. And when I got the diagnosis, like, there's a sadness, of course, because you're going to lose out on all these things that you just took for granted that you would eat or in these community relationships, these ways of connecting, like over meals and family recipes that you would share. I remember telling my boyfriend at the time, you know, I was like, he knew I was having bloodwork done, and I was seeing doctors and I was like, okay.
Like, I got my diagnosis, like, you come over and we'll talk. And, you know, I sat in his lap, I start crying, I'm like, I have celiac disease. He's like, oh my God Chloe, I thought you were going to say you like a terminal illness. I was like, I'll never be able to eat a Milky Way ever again. Like, I was brokenhearted about that.
And, you know in the years to come, I've met people who are like, yeah, I choose not to eat gluten, a top of my migraines or this and that. And I know some people who they find that sort of like a frustrating share or like a dismissal of this. Well, I have an autoimmune disease. Like, it's kind of like there's a hierarchy of validity to it.
And what I have always found myself looking for, and this is I really hate. I promise I'm bringing this back around. It's like this sense of I want to experience community, especially when you recognize, like, I'm isolated in a way by this. Right? Like illness is often isolating. Any kind of struggle that makes us feel othered and separate from people.
And so to see just anytime you connect with someone who's like, oh my gosh, I know, like, I can't eat this thing, but I found this really great brand. Like it's a way to feel closer. And so what I was trying to capture in writing Will and Juliet’s story and in the ways that they bond together over she's been in the toxic relationship.
He's feeling the familial pressure and need to be partnered with someone who's going to be able to carry the areas he does not feel strong and confident as a family business owner. He's looking, you know, very historical romance style, like the Duke who must, you know, marry and protect the family legacy. Right. Is that they're coming at it from different ways, but they're both looking for something that makes them feel secure, safe, less alone, anchored in themselves and in their desires for their life.
And so romance novels, you know, as Juliet presents them, they're something that's been a comfort to her for a long time. And that's sort of the place where she stayed in recent months, as she's not really ready to date people yet, but still wants to be in that place of love.
And Will is just fully like, I don't even know if I get it. And so it's they don't have the same needs or appreciations for something like a romance novel yet, but it's something that this trope of let's practice date, let's, you know, help each other get confident. I think it speaks to what I always am trying to create my books, and what I'm honestly seeking in my experiences as someone who, when I am open about my conditions, is like I'm not looking for someone to be, I have to say, you have a worse than me, or I have it harder than you, or here's all the ways we're different. It's like, how are we connected? How can we see like our common humanity? How can we be compassionate toward each other and curious for each other? So there's just a real intention in that trope within the novel, and then they're dynamic and in the same way that they take care of each other as they talk about their conditions, too, like they're very different from each other and they have different perspectives. But there's the curiosity and the desire to, like, make each other feel safe and known.
Dr. Denise Millstine:
I love this so much. And I loved, a couple quotes from the book where Juliet has suggested to Will that he reads romance novels, and when he does, she's relieved to hear curiosity and none of the condescension she often gets when asked about reading the genre of romance novels. It's so true. And because of that, happily ever after, because you're held in a safe place when you read romance, we have found that it's a really great genre to go to, some challenging and often closely held places like medical conditions.
Chloe Liese:
Yeah, I mean, even just the concept that like, you know, romance gets billed as an escape. Oh, you know, it's just and sometimes it is and that's great. And I'm very happy for people, including myself, to read in a way that is escapist. Like we need we need these ways to distress tolerance her way through a very distressful existence, often right.
But it's interesting to me because I read all other genres and then, like often, I actually find myself reaching for genres that get taken more seriously, like, you know, thrillers and literary fiction, you know, that they're my escape because they're not necessarily often dealing with the nuts and bolts of my life, which is, I'm a mother, I'm a stepmother, I've been divorced, I'm remarried, I am heading into perimenopause.
I write about relationships. I think about relationships. I'm doing therapy. I'm supporting my children's therapy. Like there's a lot of work, really, in nurturing humans and nurturing ourselves, that is emotional. That is relationship. And I think it's just actually really a reflection of our culture, right? That when we have it in our dominant patriarchal paradigm of like that hasn't been the space we've said is empowering or, I don't know, like it's not at the top of the hierarchy here and what we value in people.
But truly, the more we learn about what children need, what we need to be healthy human beings, it is a rich emotional life. Emotional intelligence is a greater predictor of your success as a human now than your IQ.
I just sit and chuckle when I hear people be dismissive of the genre. I'm like oh well. The truth is, is that these are novels are they can be homecomings and they can be mirrors and they can be wake-up calls. I try to write with that in mind, that when someone picks up this novel, I think they're doing something brave to spend time, 300 plus pages with people's emotions. And if I hit a nerve, or if I speak to something that they're like, oh, I tend to that. Oh, I felt that. Or even if it's not exactly something they relate to, but there's something that echoes for them, that they feel encouraged, that they're seeing people be kind to each other, that they're seeing people be curious and not condescending, right. And because I think that's really what we need from each other at the end of the day and for ourselves, is curiosity and kindness.
Dr. Denise Millstine:
Imagine if we all approached each other in this way. Before we jump back to the book, Lucy. I wonder if you'll comment about Chloe's grief at not being able to have certain foods when she received her diagnosis. I'm sure this is something that you have commonly navigated with people to whom you're delivering the diagnosis of celiac disease. Will you just reflect on that a little bit. And some of the feedback you've heard from patients about how hard it is.
Dr. Lucinda Harris:
Sure, I think that is so hard. And when I give my lectures too, about, celiac disease and the social implications of it. I kind of remind people, remember what it was like to be at a birthday party, and there were cupcakes and peanut butter and jelly sandwich, and you can't have that, or you really need to be gluten free and try to bring that home to people.
And some people, you know, they're worried about pasta. You know, that's the other one. You know, they love pasta or pizza, and they're worried they're never going to buy a pasta or pizza. And actually there are a lot of Italians that have celiac disease. So there are some great pastas actually, that are gluten free. So I try to tell them, you know, look, it's not as dismal as you think.
And there are people that are great bakers. And I try to give examples of places and restaurants that are local here in the Phoenix area to demonstrate to them there are good places to eat and there are safe places. I think that's also a challenge. I think that people who have celiac disease, unfortunately, have to recognize that some places are gluten free for gluten sensitive people and are not gluten free for patients with celiac disease.
And so the celiac patients always be like super sleuth. Mayo has a great, actually, a great handout that how to eat gluten free away from home. You know which I give patients too know how to look at, you know, being gluten free and maintaining that. And there are apps on the phone like buying, buying my gluten free.
So there are different ways, but it certainly is challenging. And I like that about the book. And I especially like that scene where they were at the bar, and the owner had gone to the extra trouble of making a gluten-free menu based on the fact that, you know, she was friends with Juliets's mom and realized that now Juliet had this challenge.
Chloe Liese:
Yeah, she gets a dedicated gluten free fryer for her.
Dr. Denise Millstine:
And what is that, Lucy? What does that mean to go to a place that has a dedicated, gluten-free fryer? Maybe this is a good point to talk about -contamination.
Dr. Lucinda Harris:
Right, it's cross-contamination and a lot of people don't realize that's one of the big things is like the fryer. You know, people fried both things that have gluten in them and things that are gluten free. So it can be a source of cross-contamination.
So you have to be very careful. You really have to ask a lot of questions when you go to a place that isn't gluten free. You know, where are they preparing their, supposedly gluten free food? Do they have a separate area? Do they have a separate cook place? Do they have a separate fryer?
Dr. Denise Millstine:
Because you would think like a French fry is probably going to be gluten free. But if the chicken tenders with breading were just fried in the fryer immediately before that, then there's going to be some contamination.
Chloe, there's another scene I really liked where, well two, one where they're at the family dinner, and one of the sisters says to Juliet, mom tried to make gluten free rolls and dad broke a tooth. Will you just comment on how it can be hard to bake with gluten free flours, and then maybe compare that to when they go to the bakery and they've got a specific gluten free case for her to choose from.
Chloe Liese:
My mother is a fabulous cook. She's just great. And she will say herself she's not as good a baker because it's scientific. It's, you know, she's a open up the recipe. I've got the vibes and now I'm going to be artistic and create and riff on it, and it's amazing. Her cooking is wonderful, and she was so supportive and such a wonderful advocate for me.
My mom is one of six, and a lot of my family extended family lives in the area and we gather for these big holidays. And she was like, we need separate pans. I'll be making the gravy. Like she really advocated for me and communicated in a time when I just felt really overwhelmed, like how to articulate that. And she and I have figured out and shared so many recipes, and it turns out she actually feels a lot better when she's gluten free. So she's generally no gluten as well these days.
But she will tell yourself that baking is not her strong suit to begin with, let alone with gluten free flour, which you know, is just. I'm sure Dr. Harris can speak to this like it's the gluten, protein right is really what gives us that satisfying association we have with like a tacky, yummy tear of the baguette or the croissant textural experience. And you just don't get that in a gluten free flour. We use xanthan gum.
There were definitely plenty of experiments in the early days with mom and I where we try to bake a gluten free analog of something I loved, and it was. It just doesn't always work very well. And so, I don't know, I wanted to kind of show how this is newer in Juliet's family, and that's a common experience where, you know, they're trying.
And like also, we're negotiating a couple different diets here because Kate, another Wilmot sister whose book is previous to Juliet's, she's vegetarian. And so her family's trying to be accommodating of that. And they're trying to make sure they're gluten free. But it’s just not always going to work out so. Well. I will say this from when I got diagnosed in 2018 to even just like in the past decade, there's been such a big jump in the quality and even affordability of gluten free options.
I feel so lucky and grateful because, yeah, in the early days, it was it was rough. It was slim pickens. It was often very hard and dry and it was very expensive. So I did a lot of just not even trying to eat any substitutes for years.
And I'm always grateful though when people try, even if it turns out bad, it's like, they tried Food is so much about our relationship to each other. What we're showing each other. You mean something to me. I thought about you. I tried my best. I took care in making sure I prepared in a separate area. So I have eaten things that objectively were not that great, but they were made with a lot of love and care, and that meant way more to me than the texture of the sawdust kind of cookie I was eating.
Dr. Denise Millstine:
Although I think you both would agree in the last several years, like with the cafe that they go to, there are some places that are killing it with their gluten free recipes, and even people who don't eat gluten free necessarily might choose to eat some of those products because they're just simply delicious. So hopefully that just keeps getting better and better. And affordability is another point. Chloe, thanks for highlighting that.
Lucy, you started talking about the digestive versus nondigestive symptoms with celiac disease. And in fact, we learned early in the novel that Juliet's had some health challenges. But really the first things that we see portrayed in the book is around her joint symptoms, she says, “Taking the stairs to the first floor. I don't exactly spring my way down how I used to. Ever since connective tissue disease took over my body, I hold onto the railing tightly and pray my knee, my left knee, behaves.”
So can you talk about some of these overlaps where it's part of celiac disease, particularly the joint symptoms, or might be a related probably autoimmune condition.
Dr. Lucinda Harris:
Yes, so there are quite a few areas where celiac disease overlaps with other autoimmune disorders. Another one is the thyroid, autoimmune thyroid disease is a big one. Rheumatoid arthritis, Sjögren's disease, that’s the one with dry eyes, dry mouth, but it can have other manifestations in the lungs and even in other organs of the body.
There are rashes that can overlap with celiac disease. So we think most commonly of dermatitis herpetiformis, which is a vesicular rash, itchy burning kind of rash, but even eczema and psoriasis are other autoimmune disorders that can cross react with celiac disease.
Even tooth enamel, when I'm talking to my patients, having weak tooth enamel is another manifestation of celiac disease, and probably also one of the biggest ones because their digestive tract is affected. They’re not absorbing calcium and vitamin D, so they get osteopenia and osteoporosis. And that can be another source of bone weakness.
I just want to also highlight, only 25% of patients actually present these days with classical symptoms of celiac disease, where you think of the child who has the big belly and fatty stools and a lot of weight lost.
50% of patients these days actually present only with one symptom, which can be constipation, bloating, iron deficiency, osteoporosis, as opposed to osteopenia, thyroid disease. So they only present with one symptom and less than 1% there are also very severe manifestations of celiac disease, like perforated jejunal disease or lymphoma. Only 1% actually present that way.
But it is interesting to note that it's not the classic presentation anymore. And providers and patients both need to be aware of that. And I think one of the hardest things for me that I deal with is people go gluten free before they have a chance to get tested.
Dr. Denise Millstine:
So let me rephrase that, because I think this is so critically important. We have lots of people who already realize they feel better when they limit gluten in their diet. But what you're saying is, if somebody is suspicious they might have celiac disease. The testing can be a false negative if they've already eliminated gluten in their diet.
Dr. Lucinda Harris:
Yes, the blood test will become negative sometimes in a period of a couple of weeks. So it really is critical. And in adults, still in celiac disease, the gold standard diagnosis is to have positive bloodwork and then to do an upper endoscopy and to do the biopsy.
Dr. Denise Millstine:
Hey listeners, we hope you're enjoying this episode of “Read. Talk. Grow.” If you find our discussions helpful and insightful, please take a moment to subscribe to and rate “Read. Talk. Grow.” on your preferred podcast platform and don't forget to tell your friends to listen. Your support will help us reach more readers and those eager to learn about health through books. As always, feel free to drop us a line at readtalkgrow@mayo.edu with suggestions for books, topics or any comments. Thanks for listening.
Dr. Denise Millstine:
It's not in the book, but it's so important that I want to highlight it as well, because you said very quickly that there is a lymphoma that's associated with celiac disease, and in fact, this is one of the reasons that people with celiac disease want to be so strict with their avoidance of gluten. Will you just talk about that briefly as well.
Dr. Lucinda Harris:
Yeah, so very few people present with the T-cell lymphoma that's associated with it. And even fewer people get what we call refractory sprue. Celiac patients also have a slightly increased risk of head and neck tumors like esophageal and other head and neck tumors as well. I think the incidence of cancers associated with celiac disease has really gone down because we have gotten better at diagnosis perhaps. But still, it is important because other manifestations of not being compliant with diet are also the bone disease, osteoporosis and osteopenia. So it's not just about cancer risk.
Dr. Denise Millstine:
And so what you said with the bone disease is that when the digestive tract is sort of inflamed because of the presence of gluten in somebody who has celiac disease, then the absorption of other critical nutrients is really impacted. And then that has downstream effects.
Dr. Lucinda Harris:
Yes, primarily because the villi are what we call atrophy. Then they go away and that's what means when you say atrophy. And you don't absorb the vitamin D and the calcium and you don't absorb a lot of other important, like trace minerals like copper, zinc and selenium. So it is really important to be compliant for the diet.
And some people heal at different rates. I think that's another thing that I find when seeing celiac patients, they're supposed to have a re biopsy of their intestines like two years later, not everybody heals in two years. But as long as you're feeling better with the gluten free diet, healing does eventually happen.
Dr. Denise Millstine:
And these villi are just little like tendrils fingers kind of that increase the surface area of the digestive tract, which is why when they flatten out, there isn't enough surface to absorb the nutrients.
Dr. Lucinda Harris:
Right. And they also contain other enzymes that help breakdown like milk, sugars, other carbohydrates in the diet. So when they come back, tolerance to other foods can alter in certain ways.
Dr. Denise Millstine:
And I suspect people who haven't really closely navigated celiac disease haven't stopped to think about how complicated it is and how many associated conditions there are. Which is why I love Chloe, that we have a character with celiac disease in “Once Smitten, Twice Shy.”
Chloe, do you want to talk about Juliet's diagnosis? So it's fairly sudden. It's Boxing Day family celebration. And, you write that she has joint stiffness, rash and digestive issues, which in retrospect seem to have been going on for a while, but they've kind of come to a head. But she's been dismissing them, I think, as many women probably do, with these types of nonspecific symptoms. Is that what you're getting at?
Chloe Liese:
Yeah. You know, she's got the oldest sister energy and she's used to having things together and being focused on other people. And as someone who pushed away and pushed through a lot of her discomfort for a long time, I wrote that experience into Juliet and that it was just kind of like for me, I hit a point where I was like, I can't, I can't keep doing this. Like, this is I've been swimming upstream and the current is too strong.
My hope is, is that in seeing like anyone, and even if they don't end up having celiac, but just if you have that nagging health issue, that or just that the symptoms that you know that they aren't right and you just don't feel good like that matters, like listen to it.
Because I know that for me, like when I worked with both a gastroenterologist and a rheumatologist, because I also have the mixed connective tissue disease and just understanding, like how multisystem it was and how much we're just dealing with across the board autoimmune inflammation problems. Right. And that's the way my doctor described it. Was it's we have a lot of noise right now.
We have this is a lot of variables. And so, you know, we have kind of, we set up a plan with steps of like, first we're going to try to just quiet the inflammation. Be careful with your diet. I went on a low dose of prednisone. I was also on plaquenil. Let's just try to get your system a little bit more calm down and then we'll be able to start isolating the variables a little bit more.
But you know it takes time. It takes money, it takes energy. And there's just so many women out there who were like, have this implicit messaging of like, I don't really deserve that. Or it would be inconvenient, or I should be spending money on other things, like so yeah, I was I was trying to kind of capture that point where Juliet is someone who pushes and pushes until she can't anymore.
And part of what she's learning in this season is how to slow down, is how to take care of herself, how to let people help her without her activating what I think a lot of us have in our culture, which is an internalized ableism right, of like, hey, if I have a need or what I perceive as a deficit compared to other people around me, like that's bad rather than it's morally neutral, it's just a need I have.
So I think there's a lot that I was trying to kind of show her without banging you over the head with it just sort of show in an organic way, like this is something you process gradually, and it really is sort of a redefining of your identity, especially when you're feeling really poorly at first.
Dr. Lucinda Harris:
On top of that, you know, I think it's so important what you just said. So I really thank you for that because my mother used to say this to me, it was very hard because I'm an only child and I'm kind of like that person who, like, always keeps pushing to. But she says, nobody takes care of you, but you. And I tell that my patients, that you got to take the time and take care of yourself. That's so important. So thank you for that.
Dr. Denise Millstine:
Yeah. I love how both of you have said that. I wonder, Lucy, if you will talk about some of the digestive symptoms that you tend to see with celiac disease. Because while we've just explained that it is a multi-system condition and that very often you're going to partner with other specialties, maybe in endocrinology and rheumatology, what are the predominant digestive symptoms that we see.
Dr. Lucinda Harris:
Well, I mean the classic symptoms have always been diarrhea and bloating. But people do present with constipation. Also early on, patients tend to have more of a, incidence of heartburn, gastroesophageal reflux disease. And there's an actual physiologic reason for that. There have been studies that have shown that an early on before the intestine is healed, gastric emptying is also slowed.
So that's why, you know, your stomach isn’t emptying the fluid and things that are there that your stomach normally makes are going to have more of a tendency. And I see the heartburn getting better after people have been on a gluten free diet. I think bloating is the hardest thing that patients deal with, and doctors have to help them treat.
And then constipation is not to be taken as just a symptom that is not related to some celiac disease, because actually some people do present with constipation. There are also and this is usually not and doesn't present the symptoms that people get. Some people present with abnormal liver function tests and those get better. There's also an association with autoimmune liver disease.
And then I think another important point is that, you know, there's an insult to the GI tract, and even active people go on a gluten free diet. What I find, and this is part of the reason that I got interested in celiac disease, because I have this interest in irritable bowel syndrome and what we call irritable bowel syndrome of the stomach, dyspepsia kind of discomfort and feeling of nausea in the stomach. These symptoms can sometimes remain even after someone goes on a gluten free diet. It's somehow like the trauma of the inflammation has created sort of disorder of gut-brain interaction.
So, you know, patients do need guidance. I've heard patients come back and tell me, oh, I got diagnosed with celiac disease and the doctor said, just don't eat bread. That was all the guidance they gave them. So it's really you know, there's a lot, a lot to be learned by, by physicians as well.
Chloe Liese:
It's heartening to hear you point that out, too. Because I have no shame, I've given birth to two children in front of, like, 15 people each time. So I talk freely about this. And like with what I write, I've written a hero who has, I wrote her having ulcerative colitis because one of my dear friends has ulcerative colitis and we were talking about she's like, she likes to read romance novels. And she was like, you know, cute girls have poop problems too. And I was like, you're absolutely right. And I write a scene in that, book, which is in for my other series, “The Bergman Brothers,” where she literally has to pull over the side of the road and poop in a field because this is what's going to have to happen to her, right?
Like it's just one of those things like, we need to just normalize that this is what every human does, because when we don't talk about it, we feel shame about it. We don't share that with our practitioners. We don't share that with the people who love us like what we're struggling with, and then we can't get the care we need.
But that was my experience when because when I was in middle school, my mom first started taking me to doctors to be like, hey, like, we think something's going on here. And I remember them talking about celiac, but they were like, well, but she gets constipated, so she can't have it. They wouldn't even do blood work for me. They were just like immediately dismissive.
And I had to go advocate for myself now. I graduated from Pitt, University of Pittsburgh, you know, great medical, resources and researchers there. And I just literally through Student Health Services was like, I need to see a gastroenterologist like, please. And I told this practitioner what's going on. I said, this was dismissed before, but could you please test me again? And my bloodwork when they called me back, I was eating a pack of animal crackers in the Cathedral of Learning, and the nurse was like, between you and me, these are the highest numbers. I have ever seen. I was like, okay, so let's put the animal cracker down. But like when there's that kind of misinformation, whether within the medical community or just sort of these blanket ideas of what is, what is valid or what is possible for a disease like it, really, it has real implications.
And that's just it's heartening to me to hear that this is more prevalently understood and being taught and communicated with people, because that exactly when I was growing up, it was like, oh no, if you're not sitting on the toilet all the time, that can't possibly be it.
Dr. Lucinda Harris:
No. And there is also a, overlap a little bit with Crohn's disease and celiac disease, and I should say that as well.
Chloe Liese:
Yeah, I have, my friend who has ulcerative colitis does eat gluten free. And so that's something we have bonded over. We have such different experiences again. But again, it's a sense of like she and I consider each other. I remember the first time I got she's a friend who has children about my kids age and we were, you know, at a happy hour with another friend and were outside and like, I had eaten something that was just. And this is true.
Like my stomach is still just it's testy. I don't know what it's going to like or not. Like what? Even if I make sure it's gluten free and I was like, I need to fart and I did it. She just looked over at me. She was like, wait, are we doing this now? I was like, if you need to please. She was like, oh my gosh, yes. And she like lifted a cheek and she did it too. My friend was like, this is beautiful. Like, this is the friendship we need. This is what we need. We need to be able to say, hey, I'm sitting outside a quiet corner of a cafe and I need to be able to toot.
Because this is when people hide that their pain, their discomfort, it's not going away. You've Crohn's or ulcerative colitis, celiac. I want the shame and the stigma to go away from it and just in showing that these people in these in like my books, they're beautiful, they're desired, they're vulnerable. Like there's an intersection of all that. And that is our full humanity is when we get to show the things that we've been taught to feel ashamed of or hide and get to show that to people. And then people get to love us and laugh with us and say, me too.
Dr. Denise Millstine:
I can already see the sound bite from the show is going to be, “Cute girls have poop problems too.” Lucy, will you talk a bit about the non-dietary treatment? We just heard Chloe talk about some anti-inflammatories, which were probably directed towards the connective tissue disease, but are there medications that you use for some of the symptoms with celiac disease.
Dr. Lucinda Harris:
Well I think in Chloe's case she also had the joint symptoms. I mean we don't generally use prednisone. Maybe somebody who has a you know, refractory sprue we might use that or azathioprine, also called Imuran. And then sometimes in people with refractory sprue, we use biologics. But primarily the treatment is a gluten free diet. And I also want to mention that a gluten free carbs are much more calorie dense and heavier on the stomach than wheat.
So that's another thing that patients with celiac disease run into you. And then they are working on compounds, you know, glutenases and things that can break down trace amounts of gluten so perhaps people won't get as many symptoms. But still, the treatment is primarily a gluten free diet.
Dr. Denise Millstine:
That's exciting that there's some future advances and treatments maybe on the horizon. One thing I noticed with Juliet is that particularly with her joint symptoms, she seemed to feel better when she could immerse herself in warm water or get away from being cold. And also when she didn't overdo it, like when she'd had a long day and she was kind of pushing herself. That's when you would see these symptoms manifest. So I think there's probably a lot of lifestyle approaches in addition to the diet, that can help people at least reduce their symptoms. I don't know if you both agree with that.
Dr. Lucinda Harris:
Yeah. I have to say that, a word of caution here, because I know people like, you know, people with celiac disease do need to sometimes take, you know, vitamins, multiple vitamins, calcium, vitamin D, iron. But people also need to check and make sure that these supplements are gluten free.
There was a study a while back looking at probiotics, and even though they said they were gluten free when they were tested at greater than 20 parts per million of gluten that was allowed. You know, that's the standard here in the United States and in Europe. For foods to be gluten free, they need to be less than 20 parts per million.
So I really try to encourage people with celiac disease, if they want to improve their microbiome, that they do it in ways that are natural, by having foods that may contain probiotics, like, you know, yogurts. There are so many more choices for yogurts that are even dairy free. Having prebiotics like, you know, sauerkraut and kombucha and things of that nature. I think we need to be really careful and also advise people, that make sure that they are really gluten free when they take a supplement or a medication.
Dr. Denise Millstine:
That's a fantastic point.
Chloe Liese:
I identify with just that after you realize like, oh my gut, my microbiome has been trashed for quite a while. Like I felt a lot of anxiety about wanting to heal it and improve it. And as someone who's very driven and like, I like to set out a plan, I like to do my research. I like to get things figured out, like there's these waves of frustration and setbacks where I would have like, more of a flare up in my symptoms.
And for years dairy was like really a struggle point for me and I. When I started nursing my first daughter, I was completely dairy free for years because then I got pregnant again and I was nursing another child and like for a long time I thought I needed to be dairy free. And I was really sad because I love cheese. And so I was focusing on, like, you know, eating my I was making my own cafe here. I was eating the dairy free yogurts. I was, you know, pickling vegetables.
And I happened to like, try a couple of years ago, I was like, I just really I was out with girlfriends. There was a beautiful charcuterie board, and I was like, I want to have that goat cheese. And I, like, felt okay. And then I started sort of experimenting and I don't know, it's to me it's hard and it seems like there's a lot of trial and error for what supplement combination. I have to take a bunch of vitamin D because I'm vitamin D deficient all the time, or, you know, what sort of probiotics are going to actually upset your stomach first to make it feel better. Like you have to be patient with yourself and it's very individual and it can change too.
Like I, I do believe that I've been healing long enough that it's like I think I can tolerate dairy better now because my guts finally like, okay, we're safe now. You can have a little bit of that. We're not going to go hog wild and get upset here. So it's hard in that sense. And that's what I wanted to show too, is like, there's days where Juliet can do more and she feels good. And then there's these days where, like, the cold just gets to her and the movement is exhausting.
And that that is still my experience between hormones. I live in Pittsburgh, where it's absolutely gray and cold, and I'm just like aching today. But, you know, it was warmer yesterday or the day before. It was sunshiny like I was doing more and I felt better. And I played soccer that night, you know. But then there's days where I literally just curl up with the heated blanket on the couch, and every time I have to get up, I'm just miserable. We contain multitudes.
And I, I wanted to show that you have to be self-aware. You have to be checking in with yourself. And since being diagnosed with these illnesses, it really did lead me toward my journey of greater mindfulness to be able to just listen to myself and learn how to adjust for my own life day to day, with grace for that, and also learn how to even communicate that with people.
Dr. Lucinda Harris:
My mom had Sjogren’s disease, and a mixed connective tissue disorder. So I know from a firsthand basis a lot of what you’re saying. And just on a second note, the lactase is at the tip of the villi. So when the villi start to heal, you can tolerate dairy better.
Chloe Liese:
Yeah. I wrote a character in my “Bergman Brothers” series. He's a professional soccer player, and he has a weakness for cheese, but he is, like, legitimately dairy is not his friend and he every once in a while he's like, I just need to eat my emotional support cheese. And then I'm just going to pay the price today and stay home. Like it's hard you know people, we love our dairy and certain kinds can feel okay.
Dr. Lucinda Harris:
Some cheese has more lactose than like a hard cheese like parmesan or cheddar and that's important to know.
Dr. Denise Millstine:
It's good to have tricks. Well, since we're coming to the top of the hour, I wanted to close by having you both comment on the importance of having people who support you when you have celiac disease. Everything from Juliet's mom, who treats her like she's kind of fragile, to her sisters who bring gluten free cupcakes, or Will, who explores restaurants that are legitimately offering gluten free. Can you just both talk about how important it is to have a support system around you when you have celiac disease.
Chloe Liese:
I would say it is obviously important because as we were talking about toward the beginning of our conversation, you know, food is and this is something I wrote in another book. I have a hero who is a hockey player who gets diagnosed with celiac. And he's like, why am I feeling so sad about this? And, his love interest is like, because food is it's so much about our connection with people. It's family, it's memory. It's comfort.
I think when you go through something like this, to be able to just be honest with people about how you're feeling and what you need, whether it's like, please don't invite me to the Wood-fired pizzeria where I can only get a cold salad while you eat something that I just learned last week. I'll never be able to eat again. In the grand scheme of human suffering, this is really not that bad. Yes, but it's where I am right now.
Like being these sort of honest conversations about here's how I'm struggling, because a lot of people, they're just not going to get it. And I think there is a sort of pervasive message in our culture that if someone really loves you, like, they'll just get you. And that's especially with illnesses like this where there's a lot of misinformation or like, people just don't really know anything. Either they know inaccurate information or they don't know anything.
It's like we have we have to be vulnerable and tell people how we're feeling and what we need. And there are going to be people who are insensitive and who disappoint you, who forget you and who hurt your feelings. And sometimes you're going to have conversations and say, hey, next time, can you just tell me you're not going to do things because I'll do it.
I'm the person who now, whenever we're in social settings, there's another woman who's even more has to be even more careful than I am. Like she's nearer to her diagnosis and I always make sure when we're gathering that I make a gluten and dairy free savory item and sweet item, and I bring it and she's usually, like, on the verge of tears every time because she's just, she's I feel seen and I just I get it because you feel a little invisible.
So I would say overall, we need our people to be supportive of us, and we have to be vulnerable enough to show them how they can support us. So whether that's sending them articles, educating them, just being personally open about what we're looking for in our emotions or our logistical support, and there will be people who let you down. But then there are people who don't, and they're the people that you stick with. And you know, they're the people in your life and your inner circle.
Dr. Lucinda Harris:
I also want to give a shout out to like and diagnosis finding and having your doctor help me find a good dietitian that knows a lot about celiac disease, because they can be extremely supportive. My patients, I insist that they see our dietitians because they're GI dietitians, and they really do help guide them, and they're there to help them along the way. And I do think family is important as well, with friends who are supportive.
Dr. Denise Millstine:
Building the team. This has been such an incredible conversation about celiac disease with Chloe Liese and Dr. Lucinda Harris. We talked about the book “Once Smitten, Twice Shy.” Listeners should go out and read it right away. Thank you both for joining us.
Dr. Lucinda Harris:
Thank you.
Chloe Liese:
Thanks so much for having me. It was lovely.
Dr. Denise Millstine:
“Read. Talk. Grow.”is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
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