Episode 7: Impact of Chronic Disease on Quality of Life

Vanessa Weisbrod:

Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the Education Director of the Celiac program at Boston Children’s Hospital. And each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient’s family, the latest research, and offer suggestions for health providers to manage these complex cases.

Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA Category 1 Credits for physicians, 0.5 contact hours for nurses, 0.5 ACE CE, continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.

Speaker 2:

Asher was a super chubby baby. His parents joked that he looked like the Pillsbury Doughboy at just four months old. Everyone who held him commented on how big and heavy he was for a baby, but instantly fell in love with his very rosy, kissable cheeks. Asher stayed plump until around the age of five, when he very quickly thinned out. He grew a little bit, but went from being in the 99th percentile for height and weight to below the 20th percentile for both in just one year. The sudden drop raised a red flag for his pediatrician. So at his annual physical, the doctor recommended running some lab work to investigate what may have caused the dramatic drop on the growth chart. The testing involved an antibody test for celiac disease.

Vanessa Weisbrod:

Many children with celiac disease are first screened for this autoimmune condition because they have growth and weight issues. It’s typically picked up at an annual well child visit with their pediatrician. Poor growth is one of the most common symptoms of celiac disease seen in children. Pediatricians can easily screen for celiac by ordering the tissue transglutaminase IgA antibody test, plus a total IgA, in order to ensure that the patient generates enough of this antibody to render the celiac disease test accurate. All blood testing for celiac requires that the patient be on a gluten containing diet, to be accurate.

Speaker 2:

Three days after the physical, Asher’s pediatrician got the report back and the celiac antibody test was more than 10 times the upper limit of normal. He provided Asher’s parents with a referral to a gastroenterologist at their local children’s hospital to get a small bowel biopsy. Two weeks later, Asher saw the gastroenterologist, and one week later he had a positive biopsy confirming the diagnosis. His family immediately adopted a strict gluten-free diet in their home, and within a year, Asher was back on a normal growth trajectory. Life seemed to be going well.

Vanessa Weisbrod:

The good news is that once the child is on a strict gluten-free diet and the intestine heals, they typically catch up on growth and weight. It can happen very quickly for some children, but for others, it can take longer than two years to see substantial growth.

Children with celiac should have regular visits with a gastroenterologist and dietician who specialize in celiac disease and the gluten-free diet. They will monitor for weight gain and growth, screen for coexisting autoimmune conditions, and check for vitamin and nutrient deficiencies. Follow-up visits with the gastroenterologist are recommended at two months, six months, and 12 months after diagnosis, and then annually thereafter. It’s important to continue these follow-up visits as life celiac disease changes with different life stages and development.

Speaker 2:

Things felt pretty okay on the gluten-free diet for Asher until he got to high school and he found himself longing to go out to eat with friends at local hangout spots, and attend normal teenage activities like prom, sleepaway camp, and class trips. But his parents were very worried that attending any of these types of events may lead to a gluten exposure, so they typically didn’t allow him to go unless they brought food for him from home.

In the 11 years since his celiac diagnosis, he had accidentally been exposed to gluten four times, and with each exposure, his parents got stricter about what they would allow him to do outside of the home. There were only two restaurants he was allowed to eat at, and he was never allowed to eat food at a friend’s house. He missed his middle school outdoor education trip and a class trip to Washington DC because his parents couldn’t miss work to chaperone, and they didn’t trust the food service provider to get the gluten-free diet right. Asher missed the dinner with his friends before his junior prom. He ate dinner at home while his date ate with the rest of their group at a local restaurant. The restaurant had a gluten-free menu, but not a dedicated gluten-free kitchen, so he wasn’t allowed to go.

Asher hated his social life and always felt left out. Just before his senior year in high school, he decided he was old enough to take matters into his own hands. He started telling his parents he was staying after school for a study group, when in fact he was going to a local coffee shop with his friends. He drank iced coffee, and occasionally ate a gluten-containing pastry. He didn’t feel sick after the first time, so he did it on occasion.

Vanessa Weisbrod:

It’s well established that some children and teens with celiac disease do not follow a strict gluten-free diet. Most often, they stray when with their peers. Intentional gluten exposures can happen at lunchtime, class celebrations, group trips, and social activities. We also know that sometimes teens with celiac disease are excluded from everyday life activities, and that those who feel less integrated into their social circles are less likely to succeed on the gluten-free diet. Non-adherence can lead to negative short and long-term health consequences.

Speaker 2:

Asher’s cheating on his gluten-free diet went on for months, until his father happened to walk into the coffee shop while he was there and saw him eating the chocolate-filled croissant. For the rest of high school, his parents drove him to and from school every day.

Asher graduated high school with few close friends and feeling angry towards his parents. He couldn’t wait to leave for college, though he was already resentful that his parents played a large role in selecting the college that he would attend. They pushed him to go with his third choice college because they felt comfortable with the food service provider having a dedicated gluten-free zone in the dining hall. Asher knew deep down that his relationship with his parents and with the gluten-free diet weren’t good, but he had no idea how to fix the complicated mess he lived with every single day.

Vanessa Weisbrod:

Living with a chronic disease is extremely challenging, especially when every single bite of food every single day of your life requires thought and care. Hypervigilance in relation to celiac is when someone is severely afraid of gluten exposure, and may go beyond the necessary measures to prevent contact with gluten. It can lead to extreme anxiety, depression, and social isolation. Sometimes the patient with celiac disease exhibit signs of hypervigilance, but for a child, their parent may act hypervigilantly in how they manage their child’s condition. It can be difficult to find the right balance of avoiding gluten while still living a full life.

So how does a child with celiac disease navigate the complexities of being a teenager, going to college, dating, and progressing through life in a way that feels normal? How should parents approach the gluten-free diet with their child in a way that doesn’t lead to hypervigilance? What do researchers know about the impact of chronic disease on quality of life, and how can clinicians help their patients improve it? We’ll discuss this and more on today’s episode of Raising Celiac.

Today we talk about celiac disease and quality of life with Dr. Ritu Verma from the University of Chicago Celiac Disease Center. Dr. Verma is the chief of the section of pediatric gastroenterology, hepatology, and nutrition at the University of Chicago Comer Children’s Hospital, and the Medical Director of the Celiac Disease Center. She is also the President of the Society for the Study of Celiac Disease. Then we’ll talk about the impact of celiac disease on dating and relationships with Jessica Lebovits, a dietician at the Celiac Center of Columbia University. Welcome, you both, to Raising Celiac.

Dr. Ritu Verma:

Thank you, Vanessa. What an honor. Thank you.

Vanessa Weisbrod:

Dr. Verma, I am so happy to have you here today, because you truly get it. Not only are you one of the leading experts in the world on celiac disease, but you’re also a mom to two young adults with celiac. I can’t think of anyone who gets it more than you do. So let’s dive right in. For our listeners who aren’t familiar with the term quality of life, can you tell them what this means?

Dr. Ritu Verma:

Absolutely. And I think we use the term “quality of life” in many different ways, and I think perhaps what we can talk about is it’s truly, it’s just a perceived quality of an individual’s daily life. So in the world of celiac disease, anything that affects you on a daily level is affecting your quality of life, and I also think it’s different for different people. For some people, a particular thing is more important, and that’s important, for us to think about that as affecting their quality of life.

Vanessa Weisbrod:

How does celiac disease impact quality of life? Let’s talk about it from the patient perspective first.

Dr. Ritu Verma:

So if we sit back and think about food, food is the center of everyone’s existence. And when we think about it from a patient standpoint, so I am a pediatric gastroenterologist, so for me, my patients are the children. So I think about if we sit back and say, “Okay, here’s a child. Where all do they touch food in their life?” So they touch food at home, and I think the quality of life for some people at home gets affected because they think about the expense of the food. They think about how much of a burden they are for their parents. Then you have school. There’s school lunches. There’s school snacks. There’s after school activities. Everybody brings in pizza. That affects their quality of life. And then you think about their social relationships. You’re going out with somebody, there’s always food involved. There’s never a time that people would say, “All right, we’ll just go out for a walk, and socialize, and hang out, and there will be no food.” You’ll still be carrying a bag of food even if you go on a walk.

So I think from that standpoint for the children. And if you think about adults, if you have board meetings, or if you have a luncheon at work, there’s always a lunch at work, or you have a meeting, it’s a breakfast meeting. So what happens? There’s food. So it truly affects your life. Even if you don’t think about food as being a very important part of your life, unfortunately, it becomes a part of your life. And if you have celiac disease, then you have to think 100 times, “Is there going to be food for me? Shall I just eat? Am I a burden on somebody? Or is there going to be no food?” And all those things that go along with any sort of food-related activities.

Vanessa Weisbrod:

How is quality of life impacted for parents of a child with celiac disease, and perhaps the entire family?

Dr. Ritu Verma:

From a parent standpoint, and I’ll tell you from my own standpoint, and I hope my children don’t listen to this podcast. Well, they do listen to the podcast. But I have two children who have celiac disease, and one who does not. And I remember from the time, my youngest was six when he was diagnosed, you didn’t go anywhere without a bag of food. There was always a thought, “I need to carry a bag of food with me.” And of course when you’re younger, you’re always carrying a bag of food for your children, or you’re carrying diaper bags and things like that. But as kids get older, as parents, you don’t carry food around, or you shouldn’t be carrying food around, unless you have food issues. So as a parent, you feel that burden that, “I need to take food with me, even if there’s going to be food somewhere else.” So there is that burden.

And then the expense. I mean, the expense, as you know, Vanessa, and anyone who’s in the world of celiac disease, the expense is so much. Your grocery bills suddenly go up 10 times at times, and then you also have this guilt. I think there’s a guilt attached to that, that your children have celiac disease. You are not suffering through that. Your children are suffering through there. So there’s so much guilt at attached to this disease, even though people might say, “It’s only food,” but only food becomes a big thing. So I think as a parent, there’s a social, there’s a physical, there’s an emotional burden to that.

And I can tell you that when both of my children who have celiac disease are not around, they’re both college, and working, and all that kind of stuff, there’s suddenly, it’s almost like a burden is taken off your shoulder. You don’t have to think about, where are you going to go eat? You could go anywhere. And you don’t have to think about, “Oh, did I bring that food or not?” And I can tell you the first time that happened when the two who have celiac were not at home, there was a sudden like, “What changed?” Change was that they were not around at that time, which is sad, which is very sad that that’s how one has to think. But there’s a huge burden with this disease.

Vanessa Weisbrod:

Let’s talk about hypervigilance. What are normal cautious behaviors, and how do we know when we’re crossing a line to be overly vigilant about the gluten-free diet?

Dr. Ritu Verma:

I think hypervigilance is if you are perpetually scanning the environment. You step outside your door, and you’re constantly scanning, “Is the car door … Did someone touch the car door? Because there was gluten in there.” That’s hypervigilance. You walk into a restaurant, and from the moment you walk in, to sitting at the table, you’re constantly looking for crumbs and things like that. And not only are you looking for crumbs, but you’re actually talking about it. You’re actually saying, “Don’t touch there. Don’t sit there. Let me clean it. Let me do that,” as a parent. So that is hypervigilance.

I think there’s a fine line between vigilance and hypervigilance, and it is tough. It’s very difficult, especially when someone has just been diagnosed. When you’ve just been diagnosed, and if your child is really ill, or you yourself are very ill, then you cross that line, and you go into hypervigilance. And I think perhaps to start off, it’s okay. But then you’ve got to back off. You really have to back off from that hypervigilance state. You don’t have to think that the whole world is out to get you, and you also don’t have to think that every crumb, you need to clean down every surface all the time. So it’s okay to be a little hypervigilant when you just start on the journey, because you’re learning all this, but then it’s also very important that you start backing off, and you just learn that things are going to happen in this world, and you just have to take it in your stride.

Vanessa Weisbrod:

How do you correct hypervigilance, or help families understand what really needs to be done to prevent gluten exposure?

Dr. Ritu Verma:

So, education. I always say education is power. Education for the children, education for the person who has celiac disease, and the education for people around them. It’s important for people to know that yes, you need to stay away from wheat, rye, barley, malt, all those kind of foods. You have to stay away from them. And we also talk about cross-contamination, and so on. However, you’ve got to start thinking a little bit more practically, and saying, “You know what? If there’s a crumb sitting there, and for some reason somebody would now touch that crumb and didn’t get clean, it’s okay. It is totally okay. Nothing is going to go wrong. Nothing is going to go wrong. You just learn from that experience, and don’t do it the next time.”

So if someone gets exposed to gluten once a year or something like that, is that the end of the world? No. It’s not the end of the world. What is end of the world in my mind is if you start really perseverating about that, or if you really start focusing on that to be the be all and end all on how you exist, there’s something wrong with that.

Vanessa Weisbrod:

Let’s talk about Asher’s story. It’s hard to hear how isolated this teenager felt from his peers and even his family. His story brings up so many questions for me. For example, did Asher’s gastroenterologist know how isolated he felt in so many aspects of his life? And if they did, how might it have helped? Or what could Asher have done to get help as a teenager?

Dr. Ritu Verma:

As a gastroenterologist or as a clinical team, it’s important to educate the family that this is not a disease that you need to be ashamed of. You didn’t do anything wrong. You didn’t ask for this. It’s not something that you should be ashamed of. So that’s the first thing. And then one of the things I’ll always tell my patients when we start off on this journey is, I actually tell them, “You know what? When your child comes home and is really tearful and said, ‘Everyone else ate a cupcake, and I could not,’ you shouldn’t say, ‘It’s only a cupcake. Come on. Let’s get over this. It’s only a cupcake. It’s only this.’ No, for them, it’s not the cupcake, but it’s a socialization.”

So first of all, we’ve got to take away the stigma from this disease. It is not something to be ashamed of. Just because you want to talk about food does not mean there’s something wrong with you and that you should not. So poor Asher, my heart went out to him when I heard that story. I think it’s important for that clinical team to be able to educate the patient and the family right off the bat. Things will happen. You are going to feel bad. It’s so important to come home and talk about it. And if you feel like you can’t talk to your parents about it, then send a message … These days, there are all these portals, or you can send a message to your clinical team and say, “Hey, listen, I really want to talk about this situation.” So have the children talk. So important to do that.

Vanessa Weisbrod:

What advice do you have for teens who may be feeling like Asher did in communicating with their parents about the gluten-free diet? How do they navigate disagreements on safety?

Dr. Ritu Verma:

I will say, children will listen to their clinical team maybe a little more than they’ll listen to their parents. So I think it’s important that that discussion happen in the doctor’s office, or in the nurse practitioner, whoever the clinical team is, or the dietician, that that conversation actually happen. And perhaps us as clinicians need to put some time aside in our office visits and say, “Hey, listen, how’s life going? Tell us what happens in school,” kind of thing. So bring it out so that the child, if the child feels like, “I can’t just bring up the topic,” I think us as clinicians need to bring it up. We need to actually put it in words, not just say, “Hey, what else?” I would actually say, “Tell me about school. Tell me about lunches. Tell me about friends.” And to put it out in words, so it invites a discussion from the child and the parent.

And I think it’s important for us to, again, put it in words and say, children will listen to their clinical team more than they’ll listen to their parents. There’s nothing wrong with that. My children don’t listen to me. They’ll listen to their own … I mean, it’s part of life. I don’t listen to my mother. So there we go. So I think that it’s important for us to put it in words, and not leave it to the imagination that the child is actually going to come and talk to us, or the parent is going to come and talk to us. And then I would talk about, “Tell me what happens at your dinner table. What kind of discussions go on?” Especially when someone has just been diagnosed, because everyone is a little uncomfortable bringing up. Everyone is sort of sensitive. There’s that elephant in the room. And I think it’s important for us as the clinical team to put it out in words, and invite that discussion.

Vanessa Weisbrod:

I think that’s such a great point, that inviting the discussion in these clinical encounters is so important. I think sometimes parents come to followups wanting validation that what they’re doing is that they’re doing the right thing, they’re doing everything to protect their child, and they want validation that they’re doing the right thing. Well, sometimes they might be doing a little too much and pushing their child in a direction like Asher went. So I think that the clinician bringing up these topics and letting the kids speak is really important.

Dr. Ritu Verma:

Yeah. And I think also with the parents, their hurt feelings, as a parent, from morning to night, all that you’re thinking about is, “Am I providing the correct diet to my child? Because this is their treatment. I don’t want my child to end up with another condition, or end up with something else.” So even as parents, I think you want not sympathy, but you want that discussion to happen, and for the child to understand that the parent is coming from a good place. It’s a good place, and that we all need to work together and iron out some of these difficulties. And I think in the medical world these days, there’s such a rush in terms of you’ve got to see so many patients, that kind of thing. So I think you almost need to have time set aside, or maybe as we think about followups for patients with celiac disease, that we actually have a followup where discussion is social. Discussion is not the blood work. Discussion is not looking at their height and weight, but it’s more discussion about social.

And I do think, and even as I’m talking, I’m like, “Oh my god. I need to do more of this.” So I think it’s important for us to bring that thought process in.

Vanessa Weisbrod:

Of course it’s never recommended to eat gluten if you have celiac disease. But if a teenager comes to you and describes a situation like Asher’s, and says they want to eat gluten once a month to feel normal, how do you counsel them?

Dr. Ritu Verma:

I think I would have a very tough time counseling, but I know that even with my journey of being in this space now for 35 plus years, is over time, I think we learn more from a scientific standpoint. So we do know there’s the 20 parts per million that we talk about that you cannot have, but I don’t think we all know exactly what happens if it’s once a year somebody has some gluten, right? So I think we do need to have more studies done looking at that. One goes down a very slippery slope if you say, “Okay, you could have it once a month.” Or, “You could have it once on your birthday.” Or, “You could have it once on a special day.” So I think that’s where the mindset is. You go down a very slippery slope.

So I would be very honest and upfront with a teenager, because again, you know what? If we start making up stories, everybody can Google things, and you get all that information. So I think it’s very important to be upfront and honest and talk about, “What’s the science behind it?” Because I think that resonates more than what I feel like you should be doing. So, “The science tells us that if you have gluten, more than 20 parts per million, this is what happens.” Do we know what happens if you have once every two, three months? I don’t think we really know. So I think we need to have that research happen, and I think I’m very upfront with my patients, and I’ll tell them that, “This is what we know so far, so let’s make a joint decision here in terms of what we are going to do.” So important to listen to that teenager, and I think if you meet them on their level and their playing field, probably get more of a buy-in from them. And then you’ve got to just teach and then hope for the best. They’re teenagers.

Vanessa Weisbrod:

What advice do you have for other clinicians seeing celiac patients on supporting them with improving quality of life?

Dr. Ritu Verma:

I think it’s very important for people to understand, and this is where I think me as being the mother of children, and having been a parent of this kind of comes in, is never, ever make the child or the parent feel guilty, because I think we do it on our own anyway. We don’t need the help of a clinician to make us feel guilty. So I think that’s important.

I think it’s also very important for the clinical team to listen to what the parent or the child is saying. Because if they’ve read it somewhere on some blog, or they’ve done something, it’s very important that you have this inviting atmosphere that, “You can come in with any information. Let’s talk about it. Let’s get the facts right, rather than living in the world of myths, and living in the world of fear.” That this is not the world we want to live in. So important for the clinicians to have an inviting atmosphere, like, “Come, let’s talk about whatever.” Even if somebody says, “You know what? As you mentioned earlier, ‘I want to eat gluten.’ Okay, let’s talk about it. Let’s talk,” so that you’re inviting enough for that.

And then never underestimate the power of the patient, because there’s so much information out there. Let it come on. And then I would say the clinical team has to be very empathetic, and has to have a followup. Many a times I see patients who have been diagnosed appropriately, everything is done, but then they’re told, “Okay, go on a gluten-free diet. See you in a year.” I don’t think that that is the right thing. I think it’s important to have the patients come in sooner. The year might be their blood work, but there’s more to celiac than blood work. So that’s where it’s important for people to know, to educate the families that, “You need to come in for followup for many reasons.”

Many reasons being the education, “Did you start your journey with celiac disease in elementary school and now you’re in middle school?” A whole different education that needs to happen. So you’ve got to come in for education, talk about quality of life, and, “How can we support you? How can we get psychologists, the dieticians, and make sure that you have a healthy diet?” Not just a gluten-free diet, but a healthy gluten-free diet is important. So I think anyone working in the space of celiac disease needs to know there’s more to it than, “No wheat, rye, barley.” There’s definitely more to this disease than just that.

Vanessa Weisbrod:

As you heard from Asher, his parents largely influenced where he would go to school based on the way in which gluten-free food is prepared. How much of a role should celiac disease play in picking a college?

Dr. Ritu Verma:

So I think all my patients know that you don’t pick a college based on the diet. I totally understand what the parents are feeling, so I’m going to absolutely say, as a parent, your first instinct is, “I want to keep my child safe. I want to make it easy for them. I want …” Because college itself has its own issues, forget about gluten-free food. So I totally get it, where the parents are coming from, that they want the best for their child. But I do think this is where, again, we need to support the parents. This is here, we need to support the parents, and say, “You know what? Let your child go to a college based on where they want to go to really thrive and flourish from a education, total experience standpoint.”

And then, yes, if they don’t have gluten-free options, it is going to be an uphill battle, but that’s learning for their child, too. Because you know what? That’s life. Life’s all about, right, it’s uphill, and downhill, and flat plains, and everything else. And we then, as a clinical team, need to support the family, and support the child in terms of how to overcome these obstacles. And that’ll make the child stronger. They’ll know, “This is what I have to deal with. Until the whole world becomes gluten-free, this is what I have to deal with in terms of how do I live.” So don’t pick a college based on their dining hall. Pick a college based on what you want to do in life.

Vanessa Weisbrod:

Any other last suggestions for living a happy, healthy, and fulfilling gluten-free life?

Dr. Ritu Verma:

I wish I had that magic potion, but I think if we would all, and this is, I think, for any chronic illness, or life in general, I think if we learn the basics, and then don’t get too caught up in the minor things, and not get stressed out if a cross-contamination happens. If something happens, let’s talk about, “Why did it happen?” There are children who will see a pizza slice, and they remember from the past how it tasted, and there’s no one else around. “Let me just take a bite.” Let that child talk about it. Don’t make your children feel guilty for their feelings. You should never make a child or an adult feel guilty because, “I really want to eat that regular slice of pizza,” or, “regular slice of bread,” or “regular whatever.” Don’t make them feel guilty. Let them talk about it. So the more we can talk, the more we can be supportive and not make people feel guilty, life would be good on many aspects, I think.

Vanessa Weisbrod:

Thank you so much, Dr. Vermer, for all of this wonderful information. We’re going to take a quick break, and when we come back, we’ll have Jessica Lebovits here to discuss the impact of celiac disease on dating and relationships.

Dr. Ritu Verma:

Thank you, Vanessa. Thank you.

Vanessa Weisbrod:

We’re going to take a quick break to hear from our podcast sponsor, The Global Autoimmune Institute.

Speaker 4:

The Global Autoimmune Institute works to empower solutions and the diagnosis and treatment of autoimmune diseases through research, education, and awareness, while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.

Vanessa Weisbrod:

Welcome back, and welcome, Jessica, to the podcast. I’m so excited to talk to you about relationships today. This is so important for people living with celiac disease, and it really hits home for me. As I’m sure we’ve discussed many times over wine, I was diagnosed with celiac as a senior in college, and it really impacted my dating life. I remember going on a first date after my diagnosis, and it was just a complete disaster. It was 2004, so before gluten-free was really well known, and the restaurant actually asked us to leave, because they didn’t have anything that I could eat. It was totally awful. And of course, the guy never called me back again for a second date. It was awful. So I’m excited to talk about this with you, and your team at Columbia has done some really interesting research on dating and celiac disease. So can you tell our listeners about your study, and what you are hoping to learn?

Jessica Lebovits:

Absolutely. So your first date story really stood out to me. It is so upsetting, but you are not alone. And this is kind of where this study came about, is that we were hearing patients at our center talk about their struggles with dating. But to start, really what happened was, we do a lot of studies on celiac disease and quality of life, and we know that the diet has negative impacts on the quality of life, especially in regards to dining out. But there really was a gap in the research when it came to dining out on a date, or just the fact of dating with celiac disease and relationships. So that’s where we came to want to study this topic.

We know that when you are on a date, a lot of times dating revolves around food, especially dining out at restaurants. So we would expect that there would be these added pressures, and people might feel more anxiety, and have more difficulties when dining out on a date. And so this is what we wanted to look into, and some patients really wanted to discuss these struggles with us, but other people felt too embarrassed to bring these topics up with their providers, and felt maybe it was inappropriate to bring up. So that’s where this came about.

Vanessa Weisbrod:

So nearly 70% of participants in your study said that celiac had a major or moderate impact on their dating life. Can you tell us more about this?

Jessica Lebovits:

Yeah, so the majority of the participants did report that celiac disease had a major or moderate impact on their dating life. So this was what we expected to find, that this really was contributing to more struggle for them than maybe the general population. And we did find that the greater impact was more commonly reported among females, those in the 23 to 35 year age range, and also those with an annual household income below $50,000. Another thing is that those who did report this greater impact were found to have a worse quality of life.

Vanessa Weisbrod:

Absolutely. So dating, especially first dates, come with a lot of anxiety. How did celiac disease impact anxiety in your study group?

Jessica Lebovits:

So in our qualitative responses of the study, we actually analyzed the struggles and the emotional challenges people were facing, and found that they specifically had anxieties surrounding dining out, communicating needs related to their celiac disease, and also managing their emotions as they reported sadness, unwanted attention, and embarrassment.

So I have a few quotes from our participants and how they really summed up their experience in having these anxieties. So one respondent said that their struggle was, quote, “Relaying the seriousness of the disease without completely scaring the other person away.” Another said, “And with someone new, it feels embarrassing. And I worry that they will think I’m overreacting or taking cross-contamination too seriously.” And another said, “It’s uncomfortable to bring focus on my medical issues and restrictions while getting to know people.” Also, those who were hesitant to kiss their partner, and those who reported that their symptoms interfered with being physically intimate, did have worse social anxiety and worse quality of life.

Vanessa Weisbrod:

That’s so interesting. And I remember being on this very first date, when we were asked to leave, and I had not explained that I had celiac disease prior to going on the first date. And two of the questions that this gentleman who never called me again asked me were, could he kiss me if he had eaten gluten, and could he hold my hand if he had touched gluten? And of course, I was 20 years old in college, and I didn’t know what the answers were at that time. And so it can be just really intimidating to think about explaining your disease and your needs when you’ve just met somebody.

Jessica Lebovits:

Yeah. And some of these conversations, you wouldn’t even necessarily have on a first date. So a lot of our participants talked about the fact that they’re talking about their medical issues and their conditions when that might not have been a first date experience for somebody else. So because the diet is so involved in the treatment, it does come up very frequently in the beginning of this dating experience, and that can be beneficial for some, but very stressful for others.

Vanessa Weisbrod:

Yeah. It’s hard to talk about disease when you want to paint yourself in a beautiful light on the first encounter.

Jessica Lebovits:

Right. You’re making that impression, and you’re really hoping to make that good impression, but at the same time, you do need to explain your needs. And so I think that there’s an internal conflict there, and that’s where we found some people found this experience very stressful, and explained feelings of shame, sadness, and all this unwanted attention that they didn’t necessarily want to have. Some people reported it as a nice date turned into an interrogation about their celiac disease. So it can take a turn in different ways that people really don’t want, or it can obviously be a open communication that can go very well.

Vanessa Weisbrod:

Absolutely. So did people with celiac forego going on dates because of their disease?

Jessica Lebovits:

So we did actually have that nearly half admitted that they were hesitant to even go on dates just because of their celiac disease, which is a bit disheartening. We also found that the majority, though, who were going on dates, preferred non-food related activities for the first few dates. So things like drinks, or movies, hiking, rather than just meals. And about three quarters did say that they prefer to take an active role in choosing the setting of the date.

Vanessa Weisbrod:

Absolutely. So our patient, Asher, intentionally ate gluten to fit in. What did you find in your study regarding intentional gluten ingestion on dates?

Jessica Lebovits:

So he’s unfortunately not alone. As we said, there’s a lot of pressure in these situations. So in our survey, we did find that 39% were uncomfortable explaining precautions to waiters in front of their date. 28% engaged in riskier eating behaviors on a date. And then the most shocking number is that 7.5% of our participants did admit to intentionally consuming gluten while on a date.

Vanessa Weisbrod:

Wow. It’s so hard to see that. I mean, 7% sounds like a little number, but it’s really not, that these people chose making themselves sick over being truthful or being comfortable enough to explain their needs.

Jessica Lebovits:

They are choosing in the moment what matters to them, and unfortunately, in this case, they obviously have decided that they’re going to risk having gluten exposure for whatever reason, and these are the types of topics we really want to find out about in our patients so that we can find solutions, besides just ingesting gluten, that are going to make them feel comfortable in these situations.

Vanessa Weisbrod:

Absolutely. So dating and relationships are obviously a very important part of life. Can you talk to us about how you work with patients to navigate the challenges of a gluten-free diet while still having some normalcy in this area?

Jessica Lebovits:

So our hopes with this study is that this topic becomes more relevant, and people feel more comfortable bringing up these questions and challenges with me and with their practitioners, whether it’s a doctor, dietician, psychologist. The more that you’re meeting with your medical care team, the more that you can address these issues. And these are the quality of life issues that go beyond just, “What is gluten? What isn’t gluten?” “What can we do about these challenges, and how can we develop good coping mechanisms to be able to address them?” So as a practitioner myself, I want to ask questions about what is happening in these situations where gluten might come up, and what’s happening in these dating situations.

So I always ask about the full picture of a patient’s life in terms of their diet, their lifestyle, their dining out, who they’re dining out with, but also I do ask them, “Do you ingest gluten, or do you think that you have gotten gluten exposure?” And if the answer is yes, which I hope that all patients are honest, is that we’re in a non-judgemental zone. We want to find out why. So I’ll ask them, “What was the scenario? What was the food? Who were you with?” And ideally, we’re getting to the bottom of it there, of, “Oh, well, actually, I was on a date. This is how I felt.” And I might say, “Why did you feel that you needed to consume the gluten, or take these riskier chances?” And we really want to kind of dig deep and find out the reasons behind it, and what’s going through their mind in those moments, and then talk through solutions. “What can we do the next time so that you’re feeling comfortable and you’re feeling confident in your gluten-free diet and in your decisions?”

Vanessa Weisbrod:

For sure. So I knew that my husband was the one after our first date for many reasons, but one was that he was so caring about making sure that I could eat the food. It was so comforting to me to be with someone who was willing to be an advocate, even on our first date. How do we help spouses and families of people with celiac disease understand the importance of them also being an advocate?

Jessica Lebovits:

Well, I’m just so happy to hear we went from the terrible first date to a wonderful, supportive spouse. So that is a story that hopefully can be for everyone, or maybe we even skip the terrible first date.

Vanessa Weisbrod:

Yes.

Jessica Lebovits:

Okay. For educating others, I think the two most important things for explaining and having others understand the importance of being an advocate is education and communication. So we do need to do our part in educating the people in our lives what celiac disease is, why it’s so important to follow a gluten-free diet, what your needs are, so that they can understand. If they have not had exposure to this before, they really just don’t know, and we need to be that person to tell them what is going to be necessary and why, and also why it’s so important to you.

And I think that’s where the communication piece comes in, too, is we need to be open and honest with our partners and our families about what you need, and what you need to feel supported. So whether it’s them just being your rock, when you are asking the questions, and not rolling their eyes in the background, or anything like that, or they’re helping you to do certain things, looking into restaurants, or pretending to be the one with celiac disease on a date, whatever it may be, you want to figure out deep down, what is it that you need out of a partner? And being able to communicate that to other people or family members so that they know, “Oh, this is really what they need from me, and I can do this and this so that in the future, we can have these positive relationships.”

I would also say that in our study, we found that most respondents valued a partner who is understanding and compassionate. So those are qualities that make sense. Obviously, we want somebody who is going to take these things seriously, isn’t going to be judgmental. And so looking for partners that will display these qualities in the long term.

Vanessa Weisbrod:

Absolutely. Because celiac is the rest of your life, and hopefully your marriage is the rest of your life as well, and you want to have fulfillment in both places.

Jessica Lebovits:

Absolutely.

Vanessa Weisbrod:

So Jessica, thank you so much for being here today and for all of the wisdom you shared with us. So I want to switch gears now and find out where Asher is today.

Speaker 2:

Asher is now 41 years old and has two young boys of his own. He looks back on his first year of college as one of the most stressful of his life, but Asher is thankful that midway through his sophomore year, he started seeing a dietician affiliated with the university health center, who helped him better understand how to safely manage a gluten-free diet while still living his life. He was referred to the dietician by the Office of Disability Services after they received so many requests for what they deemed unreasonable asks from Asher’s parents for gluten-free accommodations. After three meetings with the dietician, he asked if his parents could join him for a session to learn about reasonable ways to prevent gluten exposure. The dietician agreed. For Asher, this meeting was a turning point in his life. For the first time in years, he felt a weight lifted off his chest. It was a new beginning, and there was a light ahead.

Asher met his wife during their senior year of college. Their courtship was easy, joyful, and filled with dinners at many wonderful restaurants. Their entire wedding was gluten-free and included a four-tier chocolate cake with salted caramel frosting.

Asher and his wife have two sons. Their 10-year-old was diagnosed with celiac disease last year, but the youngest still tests negative. Asher describes his approach to managing celiac with his own son as very different than how his parents handled it for him. He says that he’s very cautious about preventing gluten exposures, but also allows his son to participate in every activity that he wants to. He is the first to sign up to bring snacks to school, and always finds a way for Josh to participate. In his own words, “I missed out on so much because my parents were so afraid of gluten harming me. The truth is that we live in a gluten-filled world, and we must learn to create a new normal for ourselves where we still live life while doing reasonable things to prevent getting glutened. There is value in being vigilant, but equally as much value in enjoying life.”

Vanessa Weisbrod:

Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from The Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac, and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like, and subscribe wherever you get your podcasts. For more information, check us out on social at @BostonChildrensCeliac on TikTok, @ChildrensCeliac on Twitter, or @CeliacKidsConnection on Instagram. Have a great month.