Q&A: How to Navigate College With Celiac Disease
An interview with Paige Merz, a college senior going through it right now.
College is arguably the most exciting time in a young person’s life—but it’s not without its stresses. Balancing classes, internships, and part-time jobs with going out and having fun is no easy feat. Throwing celiac disease into the mix? Well, that can complicate things—a lot.
I often tell myself I’m lucky, in a way, that I didn’t find out I had celiac disease until I was further along in adulthood—I’m not sure I was mature enough in college to handle a diagnosis like that. And I honestly don’t know if I would’ve adhered to a strict gluten-free diet back then.
That’s why, when I came across Paige Merz’s Instagram account, Gluten-Free Paige, a few months ago, I was super-impressed. Paige is currently a journalism major who’s in her senior year of college—and she’s thriving with celiac disease.
On her Instagram account and her website, Paige documents her favorite gluten-free eats in New York City and beyond, as well as tips for navigating college life with celiac disease. I connected with Paige recently and interviewed her about all things college and celiac. Check out our Q&A below—and make sure to give her a follow!
Q: Tell me about your celiac journey. What kind of symptoms did you have, and when were you diagnosed?
A: I was diagnosed in 2019 when I was a junior in high school. That was a really fun time, especially because I came from an area where I lived on the Canadian border in the middle of nowhere. Nobody even knew what celiac was and there was one shelf of gluten-free crackers in the entire grocery store because there was no demand.
When I was younger, I could never hold onto weight. I was a tiny little twig, no matter how much I ate. It gradually got wore over time. I was always sick. I always had these stabbing pains in my stomach. My mom always jokes about it because I’d be curled up in a ball and she’d be like, “What’s wrong with you?” and I’d be like “Pizza.” So it was a funny thing.
My dad told me to go to my primary care doctor and tell them I how feel. I was always tired, I always had weight loss, and of course, abdominal pain. I also had severe anemia, which magically went away after I was diagnosed.
The doctor referred me to a specialist. They did a blood test and then that was it. I just went with it—obviously, I was like, “If it makes me feel better, it makes me feel better.” But it was definitely a huge learning curve to go gluten-free.
Q: What was the most challenging part of going gluten-free?
A: The most challenging part was avoiding pie. I loved raspberry pie. There’s a huge Amish population where I’m from, and they make the best pies. I remember the day I got my diagnosis, I went home and ate an entire pie—and I suffered the consequences. I was like, “OK, I guess that’s it.” That was my final farewell.
Then it was just hard. Because there’s one grocery store for 50 miles. We lived in the farmland unless we went across the border to Canada, which was nice because gluten is labeled as an allergen there and my mom works in Canada part-time. It was easier to find things there.
Eventually, COVID happened and the border closed. At the beginning, I was only eating certified gluten-free things because I still didn’t really understand how to read a label. But when the border closed, all hell broke loose. Obviously everybody was ordering things online and the mailing system was a mess. I think I was living off rice.
I think it was a learning curve for my parents too—they were just so confused. They’d be cooking and using soy sauce and then remember it had gluten in it. It was difficult. I always joke with my boyfriend, “I’m going to move to Europe.” It seems much easier there to find food.
It was especially difficult in high school. I was at the end of my high school years and it was a small school. So everyone was like, “Why can’t you eat this anymore? What’s wrong with you?” They were so confused. And I was like, “Well, it’s funny story…”
I found a safe haven in my chorus teach in high school. She was gluten-free because she had an intolerance. She was the only other gluten-free person I knew at the time. I used to steal her pretzels all the time. She was very helpful with locating things I could eat. Now, it’s like a second brain at this point. I know automatically. But I definitely wouldn’t want to go back to those days.
Q: How is it navigating celiac disease in college?
A: So, the first school I went to, when I was on my visit, I told them I needed to have accommodations and asked if they could make them. I had to bring a doctor’s note and go through the health center so I would be flagged in the system.
I went into it having such high expectations and thinking that I’d be good to go. When I got there, they had no idea what was going on. Everytime I would ask, it was like, oh, it’s because it was a very small school. For dinner, they would have fried chicken, which wasn’t for me.
I would ask if they had anything gluten-free and they said they had a fridge, which was over in the corner. It was called the allergen-friendly fridge. The only thing in it was a loaf of gluten-free bread and a gluten-free cookie that had definitely been there for a long time. I was paying around $6,000 a semester for a meal plan where I was only eating salad and a cookie every once in a while. If I was lucky, they would have plain rice.
It was frustrating trying to get something filling. I was also playing lacrosse and didn’t have a balanced diet. I was trying to find a way to make myself good food in a microwave. That was my best option—or DoorDashing food with the money I had from my minimum wage job. It was difficult.
After my first year, the school kept telling me to meet with the person who ran the dining hall. I was like, “It’s going to get better.” They were like, “We’re going to do more, we’re going to help you,” and they never did.
Eventually after that, I moved off-campus. I got an apartment with some roommates and split the rent with them, It was cheaper than living on campus. And then I just made myself food because I didn’t trust anybody.
Q: How was it sharing a kitchen with roommates?
A: It was good. It was ironic because one of my roommates was also named Paige, and she was gluten-free too. She was in the same boat. She was also dairy-free, and sometimes her parents would buy her gluten-free things with dairy in them, and she’d give them to me.
We all had our own cabinets—and everything was very clean because we had a nice dishwasher. I really miss it because I have to hand-wash everything now. But it was nice to know someone else who was gluten-free. That’s part of the reason why I wanted to make my Instagram and my website—to find other people that were in the same boat.
Q: When did you transfer schools—and how has that experience been?
A: I was in the beginning of my junior year. It was partially because I hated the lacrosse thing—it wasn’t enjoyable. I was living on my own and having to pay my way through everything. I was working three jobs while playing lacrosse and going to school. So my quality of life was gone.
The school also dropped the journalism program, so I ended up transferring to a state school here in New York. I’m working on finishing as quickly as possible to save as much as I can on my student loans.
For upperclassman here, you have a chance to live in a residence hall where you have a required meal plan or you can live in an apartment on campus with a kitchen. I do have a small meal plan that’s about 50 meals per semester, and that’s for times when my classes are close together and I don’t want to walk all the way back to my apartment. I just get a salad.
It’s cheaper to do it this way—originally, I had a full meal plan, but there weren’t a ton of options. They’d be like, “Yeah, we have a lot of gluten-friendly things,” but gluten-friendly is different from gluten-free.
I do feel bad for freshmen because you’re required to have a meal plan if you live in a residence hall—especially when they claim they can accommodate you but they tend not to. I would love to be an RA to save myself money, but there’s a 50% chance I would get placed in a residence hall where I wouldn’t even be able to have a fridge.
I think bigger schools might have better options for students with dietary restrictions, but when it comes to some of these smaller schools, you may not get helped in the way you need.
Q: How do you navigate social situations?
A: That’s actually my least favorite part—one thing that’s worse for me than going out to a restaurant is having dinner at somebody’s house. Prior to dinner, I’ll read all the ingredients they’re using.
But once you become a regular, then it becomes a lot easier. My boyfriend’s family has a whole gluten-free section in their cabinet now. They did their research, which was so sweet. I love them.
But when it comes to going out, honestly, most of the time, I’m like the princess. My friends accommodate me. We either go somewhere that’s 100% gluten-free or somewhere that I’ve been multiple times and I know I can eat there.
Of course I complain that it’s more expensive, but when it comes to eating out, I like sticking to places where I can feel normal. Anywhere that I can order anything on the menu, I’m like, “Give me that right now, I need to go there right now.”
Q: You go to school in Westchester, New York, and travel into New York City frequently. What are some of your go-to gluten-free spots in the area?
A: I know it’s kind of basic, but I love Modern Bread & Bagel. Who doesn’t? I found them on TikTok when I was 17—so a year after being diagnosed. I was like, “Mom, I want to go there when I go to school near the city.” Whenever I stay in the city, I’m in midtown, so it’s a quick little trip.
I also really like Thyme & Tonic and Wild, which I also found on TikTok. Friedman’s is another one—it’s like a mini chain. They have a huge menu and a lot of options there. A huge part of why I came to this area is that there’s just so many options.
Q: What inspired you to start your Instagram account and blog?
A: I started the website in October. It was a random night, and I was sitting in bed until 4 am and was like, “I’m going to build a website.” I’m a nanny for a family in a town close to my school and the mom is a fashion blogger. She was like, “This is my career. I write on my blog and I post on Instagram.” I thought that was cool and that I could do that for being gluten-free.
I really just wanted to connect with people, especially because there are a lot of hidden gluten-free gems in the city. It’s also good to meet other people through it. I like finding new places and trying them, and I like to write about them. Sometimes, I write about lifestyle topics—like being gluten-free in college and how gluten isn’t a major food allergen. It’s fun, and it looks nice in my portfolio, especially since I’ll be graduating soon.
I’m trying to work on a cookbook with one of my friends who always goes to the gluten-free places with me about eating in college. Here’s what you do if you have a microwave and things like that. Something like that would’ve been helpful to me, especially because there can be so many restrictions on what you can have if you’re in a residence hall room rather than an apartment.
Q: What advice do you have for other college students navigating celiac disease while they’re in school?
A: I think you should really do your research behind the scenes and find other people who are gluten-free or people who have other dietary restrictions to talk about their experiences at the school.
Another thing I wish I did my freshman year before committing to a school is to reach out to dining services and actually see for myself what was going to be done. That way I wouldn’t have backed myself into a corner like I did.
You have to be willing to talk to people about it—and I was so scared to do that. I was like a little kid. Call somebody up? Just no. But you really have to take that initiative, otherwise you’re going to be stuck paying thousands of dollars for a meal plan and still have to sign up for an Instacart membership to get groceries.
I remember when I was looking into schools, there was a big school that had a separate room that you had access to if you had medical accommodations for something like being gluten-free. That’s not the type of thing that exists at every school, but I think it’s becoming a thing.
“Normal” people don’t have to think about this—but if you have these types of restrictions, you have to look into the dining options. That’s something I should’ve done before I chose a school.
All photos courtesy of Paige Merz
Thank you for sharing this experience- there are so many in the same situation but not much coverage of these experiences- hopefully more representation can spark important changes!!