4 Lessons I've Learned in 4 Years With Celiac Disease

Reflecting on my celiac journey, which started in March 2020

This week marks my fourth anniversary of being diagnosed with celiac disease. That’s right: I was officially diagnosed in mid-March 2020, right around the time New York City shut down at the start of the COVID-19 pandemic.

I’ve learned a lot over the past four years and wanted to share four of the biggest lessons I’ve taken away from my experience of living with celiac disease.

1. You should always trust your gut—literally

I suffered from symptoms like bloating, acid reflux, and abdominal discomfort for many years as a teen and young adult. I used to put up with the pain and tell myself that this was just how my body behaved.

It wasn’t until I was in my early 30s and started experiencing extreme pain that I took my symptoms seriously and knew I needed help.

Now I know that celiac disease was to blame for my digestive issues (and other non-GI symptoms I was experiencing)—and physically, I’m feeling better than ever since I went gluten-free.

2. You have to get comfortable with being “good enough”

At the beginning of my diagnosis, I was obsessed with doing everything “right” to the detriment of my mental health.

I beat myself up on the few occasions that I accidentally ate gluten, and I broke down when my doctor told me my celiac antibody levels still weren’t in the “normal” range a year after my diagnosis.

I had to come to terms with the fact that navigating celiac disease would be full of ups and downs. I was going to “mess up” and “fail” at times, and I’d have to be okay with that.

Over the past four years, I’ve slowly given up the unrealistic expectations I placed on myself and have accepted that I’m doing a “good enough” job managing my condition.

Gluten-free cinnamon buns, carrot cake, and blueberry cheesecake at Wild, a dedicated gluten-free restaurant in Brooklyn

3. You will develop a new appreciation for food

It wasn’t until I was told I couldn’t eat a long list of foods that I really started to appreciate what I could eat.

When I interviewed Liz from Yeet That Wheat last month, she put it this way: “I always knew that I enjoyed food, but now I really enjoy food because it feels like it’s something more precious that I can’t take for granted, which I did before I was diagnosed.”

I definitely took things like pizza and bagels for granted before my diagnosis. I live in New York City, where there’s a pizzeria and bagel shop on just about every corner, after all.

But now when I find a delicious gluten-free version of my favorite foods, I have such a deep appreciation for these items since they can be so hard to get right.

I also love trying gluten-free restaurants and bakeries when I travel—and I feel so accomplished when I successfully cook or bake gluten-free versions of my favorite foods.

4. You can live a full and rewarding life with celiac disease

Early on in my diagnosis, I joined a bunch of online groups, which were littered with comments from people who were miserable.

They complained about how gluten-free food sucked and they weren’t able to do any of the activities they used to prior to learning they had celiac disease.

I’ll admit it: These comments really got to me. I wondered if I’d ever be able to have fun again. Luckily, I realized these people were totally wrong. It’s entirely possible to live a full and rewarding life with celiac disease.

Sure, it takes some advance planning before dining out or traveling—but with a little prep work, you can still do the things you love. I traveled to five countries last year—and I don’t plan on stopping!

What lessons have you learned since you were diagnosed with celiac disease? Let me know in the comments!

Image by freepik