FAACT's Roundtable

Ep. 215: The Celiac College Guide

• Nicole Kessler • Season 4 • Episode 215

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We’re sitting down with the founder and president of a new non-profit, the Celiac College Guide, Nicole Kessler, to explore this guide and learn more about how to find colleges that meet the needs of families living with Celiac disease. Nicole is a career educator named National Teacher of the Year for Teach for America. She eventually became a school administrator in urban and suburban, district, and charter schools and served on her local board of education.  She's a mother of three children, two of whom have celiac disease.

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[00:09] Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use. Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation. Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT's Roundtable podcast. I am a food allergy parenthood advocate and the founder of the Gratefulfoodie blog and I am FAACT's Vice President of Community Relations. Before we start today's podcast, we would like to take a moment to thank Genentech for being a kind sponsor of FAACT's Roundtable podcast. Also, please note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast. We're sitting down with Nicole Kessler, the founder and president of a new nonprofit, the Celiac College Guide. We're going to explore this guide and learn more about how to find colleges that meet the needs of families living with celiac disease. Nicole is a career educator named teacher of the year for Teach for America. She eventually became a school administrator in urban and suburban district and charter schools and served on her local board of education. She's a mother of three children, two of whom have celiac disease. Nicole, welcome to FAACT's Roundtable podcast. We're absolutely thrilled and delighted that you're here because this is a topic that we haven't discussed and we really need to discuss, and you are quite the educational expert. So welcome.

[02:07] Nicole: Thank you so much. I'm so excited to be here. It's such an honor and just grateful for the opportunity to have this conversation.

[02:14] Caroline: Thank you again for your time. This is going to be a really good one. So before we get started, I want everyone to get to know you better. Before again we start exploring the Celiac College guide. Can you talk to listeners about your background, which is incredibly impressive, and then also how you came to creating this guide?

[02:34] Nicole: Sure. I'm a career educator. I started off as a teacher and was there an assistant principal, principal, etcetera. I'm one of those people that loves middle schoolers. It's not for faint of heart there, but I've always loved it and currently work with a charter network, actually as a senior leader there. And throughout all of that, this idea of inclusion and how do we meet the needs of all of our kiddos has always been first and foremost in my heart also a mom of three, including two daughters that have celiac disease. And so this is truly something that's very personal to me, both professionally and personally as a mom. And so what happened is, a couple years ago, I came across a study by the National Celiac Association, which honestly, truly haunted me. It has statistics about kids in college with celiac or with gluten intolerance. And it has statistics like, over half of students with celiac routinely skip meals in college because of concerns over gluten. And a quarter of them reported being gluten monthly. And that's devastating to read about and to hear. I with that. Also, it said that over half of students don't recommend their own schools or colleges for being gluten free. And for kids with celiac, this isn't just a matter of convenience, as you know. It truly can be a food insecurity issue. My own daughter, for example, gets incredibly sick and is out of commission for days. And so I knew that something had to change. At the same time, I saw parents truly scrambling for information that they could trust, right? And so they're trying to figure out, where can I send my own child to meet their very basic health needs, which also, obviously, has a social emotional impact. And so there are Facebook groups, for example, where people are saying, does anyone know any school in New York that could be good for my kid? Or does anyone know anything about a certain school? And I knew that there must be a way to make this easier for people and to improve outcomes for kids with celiac and gluten intolerance. And through my research, I also learned that there are schools that are really doing this right. There are schools that have these beautiful gluten free dining halls that really cater to a lot of different allergies. And so part of what I've always tried to do as an educator, for example, is shine a bright light on practices or places that are doing this well. And so, from all of that, the Celiac College guide was born. Took about a year to a year. I really call it a labor of love. Right. When people talk about a labor of love, this is definitely an example of that. Between researching over 500 schools approaches to gluten free dining and support and getting this directory built out. And we launched just a few weeks ago, so here we are.

[05:19] Caroline: Well, I have to say, I looked at the guide, and it is very in depth, and I can see it is such a big undertaking. So thank you. As a fellow parent that has children in college dealing with special diets. So, anyway, I'm really personally excited about this because I remember when my daughter was in her sophomore year, she called me in a pure panic that her friend had just got diagnosed with celiac disease and didn't know what to eat and wasn't eating. And she was in such a panic. So I was able to introduce her to some of my friends who have Celiac and their students to get her going. And then I created a big care package and sent it over. And then my daughter has a relationship with dining services because of her food allergies. So then she was taking her to dining services. But it was such an overwhelming, frightening moment, because here you are, you need to focus on your academics. You have all these things you need to focus on, and now you don't know which way to turn. I think this resource has been sorely needed, and I'm just delighted you are here to discuss it. So, you know what? Let's actually just go right into the guide. And so what is in it? And then if you can talk to our listeners to what to expect, and then how can they use it?

[06:32] Nicole: Sure. Thanks for asking. So we really wanted this directory to function like a directory, right. And to be helpful for different stages in the process. So, again, we have information on over 500 schools in there, and it depends on where you are, right. If it's the fall, you might be saying to yourself, I don't know where I want to go to school. So we have filters in there for things like public or private universities, regions of the country, acceptance rates, so that you can use it like a regular directory. But what makes the Celiac College guide stand out is we also have a filter for what we call gluten free provisions. And so with that, you can say, it's important to me to have, for example, a gluten free kitchen or gluten free stations or labeled allergens or a dietician on staff. And so you can also layer that filter in the. Now, if you say, I know where I want to go to school, my alma mater is Boston College. If you said it's Boston College, or, I know I want to get research on Boston College, you can just type the school right in, boom, it pops up for you. And then you can see information about each school. So the information that we have comes from three main places. It comes from research from what's publicly sourced online, from information directly from folks at the school. So often it's the dietitians that we're reaching out to. We are looking to expand that information. Dietitians, if you're listening, please take a moment and claim your site there. And then reviews from current students or recently graduated students and their families. And we know that's such an important piece of the puzzle. People want to know what is it really like? I read what it says and what is it really like? And so that's been one of my huge pushes, is to get more of those reviews out there. Just takes about two minutes. You do it right on the site.

[08:13] Caroline: Excellent. And so now, going back into that guide, I went and looked at my daughter's school, and you had their person and all that information there. So if you can kind of go into a little bit that when they pull up that school, what information they're going to see, because I have to say, I was very impressed. I don't think I've ever seen a guide where I'm getting the details of who I can contact. I thought that was just amazing.

[08:38] Nicole: Thanks for asking. So the information that we have on those 500 schools includes things exactly what you, you said about their gluten free provisions, basic information about the school, their regular website where you can get financial aid information, size, acceptance rate, etcetera. And then we have information about who you can contact. So in the case that there's a dietitian, we have that person's name and email address. And then also information about where you can find where they list on their website, for example, or in a booklet, information about the gluten free services that they provide and supports that they have. Additionally, with schools, for example, if you go in and you look at Appalachian State University, that's a university that has gone in and also given us a ton of other supplemental information. So they'll talk about the type of training that their staff has received. They'll talk about the availability of gluten free food off campus. They'll make a statement about what kind of variety the school has, so they are able to give much more in depth information about the school. So that's why we've been doing such a campaign to get the school to actually grab their listings and enter even more information manually than we might be able to source online.

[09:51] Caroline: Again, I love that. And also, I was really taken with that you had the links for financial aid because I think a lot of times people will focus on a school because they know they can meet their dietary needs, but then realistically, it might not be within that family's budget. And so I think that is so helpful and important. And again, I love how you take that approach of overall looking at college and then what other colleges might fit in? And if they don't fit in, what do you suggest? So say someone's looking for a college and there's not a lot of information, or it doesn't look like they have much knowledge. What would you say to that person?

[10:32] Nicole: Well, so I would say this about any school. You always want to triangulate the information that we have with your own research, right? And so I would never want anybody and to take what we say as the word and just go from there. And so with any school, we want you to do your own research. The point of what we're trying to do is to make it a lot easier for you to get those reviews, to have that information right there at your fingertips, because it can often be quite an intensive search to even find that information on schools websites. And so we wanted to take some of that work out of it. You know, we know that the college search process is so stressful, right? And then you layer on these complications of having to think about having your basic health needs met, and you realize how stressful that can be. I know it will have to be a major factor for my daughter's decisions, and that dramatically narrows their colleges that they have available to them. And so that's, you know, part of why we think this guide will be really helpful. Of course, the big goal, right, is not just to make a directory that's going to be helpful for people, but to impact change. And so if I think about what we really exist for, one, of course it's to ease the burden for prospective students. But we also believe that, again, shining that bright light on places that are doing well, and calling attention to those best practices, spotlighting different ways that schools approach gluten free dining and support will really help. And I think given, you know, the work that you all do, it's important to note that a lot of what we're holding up are allergen free stations, right? And so even if celiac or gluten free isn't why you're listening to this podcast, it's also an important because you can search, for example, by gluten free stations. Those are, this is a ballpark estimate, probably 95% of the time. What those actually are are allergen free stations. And so while right now our scope is really focused on that gluten free dining and support, we know that this can also serve a resource for people in your community that are listening to us today because of food allergies in general. And a lot of what people are doing right now are tackling multiple allergies at once?

[12:39] Caroline: Oh, absolutely. Both of my kids who have food allergies that are in college do look for just top nine. I mean, they look for, if someone's dealing with gluten free, then they know that's on their mind, special diets, and that's a flag in a good way. So, yes, absolutely. That definitely crosses over. So now, what do you see as the biggest challenges facing students living with celiac disease at college?

[13:08] Nicole: There's a few different ones. So one is it can, first of all, just be very anxiety producing to not know, is this meal going to be safe? Am I going to get sick? You heard those statistics about how frequently it happens. And so, you know, again, college and just being on college, it can be new, it can be scary. This is for so many students, the first time they're on their own, having to navigate this. And so not knowing whether you can potentially trust the people who are charged with taking care of you can be very anxiety producing. And what I think people sometimes lose sight of is over a third of students, at least in this study, reported that it impacts their academics. Right? Again, it's not just a matter of convenience if a student gets sick. If a student gets gluten, they're often out of commission for prolonged periods of time. And or they might be reporting things like brain fog, difficulty to concentrate in class, having, you know, stomach issues or whatever that might make it hard to get there on time. And so there is that impact on academics. And then the part that I think is probably the least on people's radar is how much it can impact our kids socially. Right. And so, again, over 70% of them said that this is having an impact on their social life. So think about it. Even if there is one gluten free station or allergen free station on campus, that's a win. Right? And so I'm not here to criticize that, but is it where your friends are going to eat? Is it near where your dorm is? Right. Do you live near that? So while there are a lot of improvements being made as far as the dining hall experience, are students who are gluten free or with other allergens? Right. Being accommodated in various social events? Food is so central into an experience, into a social experience for kids and for adults. And so it can become very socially isolating. Often the recommendation might be, you know, get a solo dorm, go live off campus, all of which are reasonable accommodations and accommodations that kids can take advantage of, but those sometimes have the effect on impacting that social life. And I think people often lose sight of that for our kids and how important that is to a college experience.

[15:22] Caroline: Well, and also, it is so typical at college to say, let's go grab a pen.

[15:27] Nicole: Exactly right.

[15:29] Caroline: And there's such cross contact issues. Even if a pizza parlor might have gluten free pizzas, there's still some research and homework that has to be done to address any kind of cross contact stuff. And again, it's so typical. Let's go get ice cream, the cones, but you could maybe get a cup. But it's a lot because that college food really is about a lot of weed.

[15:54] Nicole: Yes, it is. And I think, again, unless you've lived it and experienced it, it's something that isn't necessarily top of mind for people, but it can be very challenging. There are actually very few places around us that we feel like we can really take our family to eat because of, unfortunately, issues that we've had with exactly what you said, the cross contamination with pizza and whatnot. And so you learn over time, unfortunately, to have this questioning when you are presented food, and you don't want to have that from your day to day life. You don't have that at home, typically with your parents. And this becomes your new home when you're in college. And that's part of why this is so critical to get, right.

[16:32] Caroline: Absolutely. And then also, you mentioned being gluten, and you just talked a little bit about what that's like. So for those of us who don't have celiac, can you explain a little more deeper, what does being gluten to mean? Because I know that's a big term, I learned early on.

[16:51] Nicole: So this is probably one of those times where I'm supposed to probably say with an asterisk, I am not a medical doctor, but from my experience, I can tell you one of the tricky things with Celiac is that it has different impacts on different people. And so there are those with silent celiac, which. But it's autoimmune. And so the body is, can be attacking itself and you might not know it. For one of my daughters, it means she literally throws up until she passes out. And it is the most heartbreaking thing to see. And they say it can stay in your body wreaking havoc for up to six months. Typically, you're going to see a lot of stomach problems. For people, it presents itself in different ways. And often those with celiac report, like I said, this brain fog that impacts their ability to think clearly and to process information typically in the same way, feeling groggy, feeling sluggish. So there are a whole host of short term impacts. Of course, we know some of the larger impacts can be very devastating to a person. So it's really important. Again, it's an autoimmune disease, not a fad, not a convenient thing. And so the only cure for it is sticking truly to a gluten free diet. And so it's really critically important.

[18:06] Caroline: Oh, good. Thank you for sharing. I just want to make sure.

[18:08] Nicole: Of course. I appreciate it. Everything is different, right?

[18:11] Caroline: Yeah, exactly. So now focusing on students, if a student is having a hard time explaining to college administrators, staff, friends, even professors about best practices for handling celiac disease and actually helping them within their management at college, what suggestions might you have for that student? Because we already know with food allergies, a lot of times people are like, oh, okay, well, I just won't give it to you or I won't kiss you or something like that. So, so what do you suggest?

[18:43] Nicole: So, first, one of the things that we have on the Celiac College Guide is an accommodations guide. And like our entire site, it is free for all users. We want to make sure this is accessible to everyone. It is filled with suggestions for different accommodations that you can ask for at your college and that folks around the country have been able to get often, what is helpful in these situations is to get a note from your doctor. Right. This is a recognized disability, and what that can do is legitimize these requests that you're making. Again, it's not because it's your fad, it's your choice. It's because this is a medical necessity, just like we would do with other medical necessities that kids have. Speaking as a, as a, as a mom now, my advice would also be, do what you can control in the short term. And so what I mean by that is often, I think, what people are trying to do is take on the whole, you know, dining industry or their whole dining hall. That's what we're trying to do right now, is to make these sweeping changes that can be very hard or very stressful for a student. And again, if you're not certain that you can trust that food that's in front of you, the last thing we want is for kids to be eating that and getting sick. And so what I might suggest instead, as you're trying to make potentially some of these bigger moves that you described, is see what accommodations you can get that could put things more in control. So an example of that, that people might not think about and that we have in the guide is perhaps you can have a car on campus. That might not be an option for everybody, but what that could allow you to do is go out and get groceries. Right. If you're in the process of trying to make this work, perhaps you can get your meal plan waived. Right again, as you're trying to work with them. That mandatory meal plan can be a real pain point for families, especially because we know gluten free food is very expensive. So maybe you can get that waived in the short term while you're working these things out. Permission to have, you know, a mini fridge or microwave in your room. If that's something that's not typically allowed, just so that you have those things at your fingertips, you need, there's some bigger accommodations you can ask for, like certain types of housing that might allow you to have a kitchenette for a student in the situation you described. That's how I would think, what can I do to get food that I trust to me? And so it might be some of those other moves, repurposing that meal plan to listen, we exist because we want everybody to be able to eat healthy in schools, and we know that the need is great and that's the change that our kids deserve. But in the meantime, those are some of the things that I would recommend.

[21:25] Caroline: Thank you. And listeners, I will make sure in the show notes there's links to the website, to the guide, to the accommodation guide, so you can easily move through quickly and find this information. And I'm just so glad you brought up the accommodations part, because going back to my daughter and her friend, her friend didn't realize she could get accommodations. And once Layla started explaining her accommodations for food allergies, then her friend was like, oh, wait, this could be very helpful. So thank you for, for bringing that up. I think a lot of people don't realize it.

[21:57] Nicole: I think that's exactly right. And if I tell you how many times I've gone back to that guide and added in new thoughts and information because it's constantly evolving and we're all learning, but it really does serve that purpose. It was one of that car, right? Getting a car to be able to go off campus was not one of the things that I originally thought about. I went to a school that was adjacent to a city, but in some places, that's going to be the only reasonable way for you to get food that's going to meet your needs. If you can't fully get it on campus, great tip.

[22:27] Caroline: So our time is actually coming to an end. It went so fast. My goodness. I could keep talking.

[22:34] Nicole: This was great. Thank you.

[22:36] Caroline: But before we wrap up today, is there anything else you would like our listeners to hear from you?

[22:42] Nicole: So we've had over 25,000 visits to the website in just a few weeks from 3400 unique people, which was just mind blowing and it really highlights the need for this. And so, listeners, here's my asks right now. I would love help to spread the word. We're on Facebook, we're on Instagram. I'm working on the TikTok. This is not my area of expertise. I need one of you young people to help me with that one, but to help spread the word. And for those of you that are in school currently yourself or have a child that's currently in school that eats gluten free, we really want to make a push for more of those reviews because ultimately that's what people want to know. What is it really like on there? And so if you can just take two minutes, jump on, you go right to the website itself, boop boop boop, and you're done. And we know that's going to be a huge benefit and the sort of thing that really helps, again, to give kids the experience they deserve in college.

[23:38] Caroline: This is fantastic and wonderful. I really appreciate your time. And again, listeners, I'm going to make sure there are links to all those social accounts too. So we're going to have you covered. But thank you so much, Nicole. I look forward to us having another podcast in the future because I'm sure we have more to talk about. But good luck on the guy.

[24:00] Nicole: Y'all come hang out at one of your events. We'll figure something out. Grateful for the work that you're doing as well to bring light to both, you know, celiac and gluten free living and all our allergies. So I really appreciate the work you're doing.

[24:13] Caroline: That is fantastic and I do hope to see you. So thank you once again for your time. Before we say goodbye today, I just want to take one more moment to say thank you to Genentech for their kind sponsorship of FAACT's Roundtable podcast also, I want to note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast. Thank you for listening to Facts Roundtable podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review, and listen to our podcast on Pandora, Apple Podcasts, Spotify, iHeartRadio and Stitcher have a great day and always be kind to one another there.