Did you know that today—October 10—is World Mental Health Day? When I was first diagnosed with celiac disease, I wasn’t prepared for the toll it would take on my mental health.
Adjusting to the gluten-free lifestyle was more difficult than I thought it would be, and I dealt with a lot of anxiety around food (which, to be honest, I still experience from time to time!). Luckily, over the past few years, I have found a few strategies that have helped ease my celiac anxiety.
I know I’m not alone. Studies find that adhering to a strict gluten-free diet (the only treatment for celiac disease) is more burdensome than the treatment for other chronic conditions. What’s more, people with celiac disease are at higher risk of developing mental health conditions like anxiety and depression.
For today’s newsletter, I chatted with my friend and fellow celiac advocate Kate Ariano, about the surprising mental health impact of celiac disease. Kate was diagnosed with celiac disease in her senior year of high school and is currently navigating life with this condition as a young adult in her mid-20s.
I met Kate through our volunteer work at Beyond Celiac (we’re both ambassadors for the organization!), and we bonded over everything from our celiac diagnoses to our professional careers in communications to our love of writing. (Kate is an avid #Bookstagrammer—you can follow her on Instagram here.)
Let’s get into it below!
Q: Tell me about your celiac journey.
A: It started in September 2016 when I was 16 years old. I was entering my senior year of high school—and all of a sudden, for the first time in my life, I was experiencing severe GI issues.
I’d always been really active—I was a dancer, I was a runner. I experienced sore muscles, but I never felt some of the GI symptoms that a lot of runners feel. But then I started experiencing severe constipation and severe bloating—and I would be doubled over with cramps in the middle of class to the point where kids would look at me and ask if I was OK because there would be pain on my face.
That went on until January or February. My grandma was making my lunches at the time, and she said, “I heard of this gluten-free, wheat-free thing at church. Maybe you should try it. Maybe I’ll make your sandwich without bread and we’ll see what happens.”
The relief was near immediate—I wasn’t sure if it was complete relief, but to eat and not feel immediately bloated or feel like I just gained 10 pounds of air in my stomach was incredible. It was something I hadn’t experienced for four or five months prior.
From there, we called up the doctors. My pediatrician was immediately on top of it when she heard that I was having some relief after not eating gluten. I had a celiac panel done and got my TTG levels tested. Of course, she said they were the highest she’d ever seen—and from there, she sent me for an endoscopy.
The whole process took a few months. I ate my last gluten-filled bagel before my endoscopy—and then in August, I had my diagnosis. There were a lot of tears, but it was an answer.
I was in my senior year of high school, trying to figure out where I’d be going to college and what I wanted to do with my life. I was trying to make these big life decisions—and then I got diagnosed with an autoimmune disorder. You can imagine my mental state.
But I had family and friends who were really supportive and wanted to learn and grow alongside me. When I started college at the University of Connecticut, I went to the Center for Students with Disabilities and told them I had celiac disease and needed to be gluten-free. I asked them how I would do that on campus.
I was eating food off the line in the dining hall and thought that as long as it was labeled gluten-free or didn’t have wheat or gluten in the ingredients, it was fine. I did that for two years and was surprised when my antibody levels weren’t cut. I was getting glutened and didn’t know it. I was feeling consistent symptoms, but they were better than what they were. I told myself I was probably fine.
I studied abroad in Spain in 2019 and got extremely sick and realized that it was probably because I was getting glutened. I knew I needed to change something. So when I got back, I met with the dining halls again and asked what more could we do because I needed to be stricter about this—and they needed to be stricter about this.
Every morning, I sent them a menu, and they put food together in the back for me before it touched the line to avoid cross-contact. Every time I’d go into the dining hall, I’d find my dining hall manager and she’d watch the food being prepared, to the point where my plate was wrapped in plastic wrap. It was so much better.
Then COVID hit and I got to go home. As awful as the pandemic was, it gave me the chance to start again and reevaluate what I was doing for my health. I got a new doctor. My former GI doctor wasn’t helpful. I got another endoscopy during my senior year of college to double-check that damage wasn’t being done to my intestines even though my antibody levels were still elevated—and it was fine.
I graduated college knowing way more than I did when I started. Now I’m on this journey of using what I learned to help other people and also to figure out how to maintain this for the rest of my life—because what healthy with celiac disease looks like for me isn’t what healthy with celiac disease looks like for other people. I’m trying to navigate that.
Q: What’s it been like navigating celiac disease since graduating college and entering the professional world?
A: It’s interesting, for sure. I’m lucky that the place I work is 10 minutes from my house. So when we have group dinners after work, I get to go home and eat really quickly and then go out and have a glass of wine with my co-workers.
Sometimes, I don’t necessarily tell people that I’m doing that. It’s hard to have to explain that to somebody who isn’t familiar with celiac disease. I think it does help that I work at a women’s health company and that we’re very open in talking about diseases and conditions that women go through, though.
We don’t have a ton of gluten-free options nearby, so I have to bring my lunch every day—otherwise, I wouldn’t be able to eat. Thankfully, I live close to the office, and I brought my lunch every day to school after I got diagnosed. So I wasn’t upset that this was something I’d have to do while working.
Sometimes people ask me why I don’t come down for lunch or why I’m not doing this activity—and it can be kind of embarrassing sometimes to have to explain it’s because I physically can’t.
Q: What’s been the most surprising or challenging aspect of living with celiac disease?
A: The mental health impact. I know people are talking about that more—but I think we need to speak up about it as much as we can, as often as we can. My number one anxiety about having celiac disease is not my symptoms. It’s not how I’m feeling on the day-to-day. It’s thinking about the damage that could happen.
You can’t get an endoscopy every three months to check for damage—and you can only get your TTG levels tested however frequently your doctor recommends. Sure, you can request the celiac blood test, but then you get into having to pay for it out of pocket.
So my biggest anxiety is not knowing if I’m getting glutened. Am I suddenly asymptomatic? Am I eating little amounts of gluten but my body is just not alerting me? These anxieties, however real or made up in my head, still keep me up at night. Even if you don’t experience symptoms, gluten could still be harming you.
These are the things you can’t see. I talk a lot about how celiac disease is an invisible illness in that respect. Outside of getting an endoscopy, we can’t see our intestines, we can’t see the damage. You can look at me and think I’m a healthy 24-year-old—but you can’t see what’s going on in my gut.
Q: What do you do to ease your anxiety around celiac disease?
A: One thing I learned was how to ground yourself in the facts. I have a journalism background and I work in communications. It’s all about the facts, it’s all about reading and research.
So I try to ground myself in the facts: I’m eating gluten-free, I’m doing everything I possibly can, and the endoscopy showed there’s no damage in my gut. I fixate on what I know to be true. It helps drown out the voices that say, “Well, what if this other thing is true?”
If the endoscopy shows there’s no damage in my gut, then there’s no damage in my gut—science is telling me that. So grounding yourself in the facts, in what you know, and talking to doctors who know the science—those can all be helpful. I’m not a doctor, but I do as much research as I can.
Anxiety is afraid of facts, anxiety runs from facts. When you can find what’s concrete, what you know to be true, it can scare the anxieties away. Not all the time—sometimes it takes more. But for me, when I have those moments of what-ifs and those anxious fears, I latch onto what I know is concrete.
Q: What other advice do you have for someone your age who’s going through a new celiac diagnosis?
A: You have to give yourself grace. You have to accept that you won’t know everything. You have to know that you’re going to need to lean on other people, even if it’s just for mental support. This is a hard disease to have to figure out on your own in the beginning without any kind of mental support.
My boyfriend has been one of my biggest advocates. If he couldn’t take on part of this mental load for me, I don’t know where I’d be. Surrounding yourself with people who can help carry that mental load and who are willing to support you and do the work with you is key.
Q: Switching gears: What made you want to volunteer for Beyond Celiac—and what do you hope to accomplish through your volunteer work?
A: I just want to help. We all have different experiences with this disease—and if I can help someone else, even if it’s just one person that I’m making feel less alone or validating that what they’ve experienced is actually normal, then I will shout my story from the rooftop. I felt so alone in the beginning. I don’t want anyone else to feel that way.
When it comes to advocacy and sharing my story, Beyond Celiac is the perfect platform. They encourage us as ambassadors to do as much as we can. On the flip side, they also involve us in what they have going on from an advocacy and education standpoint. I went to Washington, DC, in May to talk about clinical trials and patient advocacy.
Q: Tell me about your Bookstagram account and why you launched it.
A: In the same way that I don’t want people to feel alone in their celiac journeys, I don’t want others to feel alone if they’re going through the book-writing process. I started writing my first novel in 2021, and I’m still writing it.
That was such a scary thing for me to come to terms with until very recently when I found this community of writers who have also been writing their first novels for years.
In the same way I want to share what I go through with celiac disease, I want to tell people about what it’s like to be a first-time novelist and have a 9-to-5 while doing that. If one person can relate and one person feels better about what they’re going through, I’ll know I’m making a difference.
Q: Is there anything else you’d like to add?
A: I want to remind people to be kind to one another. Healthy looks different for all of us, we don’t all have access to the same resources or care, we don’t always have good support systems—and that’s not always something we can control.
I think the kinder we can be to each other and the more respectful we can be of each other’s unique journeys, the better.
How has celiac disease impacted your mental health? What do you do to ease your celiac anxiety? Drop a comment with your thoughts!
This is definitely something I needed to read. Despite being diagnosed in 5th grade, I still feel sad, upset, and angry even.
I loved this interview — there's so much that needs to be said on this topic!