Describe your life prior to diagnosis:
In hindsight, there have been signs of celiac disease my whole life that we just didn’t know to look for. I had eczema from infancy, I have always been super small (both in stature and weight), and I started having serious joint pain and recurrent injuries at age 11.
Nevertheless, I was a very cheerful, silly, and energetic little girl. And very active—I have been a dancer since the day I could walk.
How did you come to know (or suspect) that you have celiac disease?
In 2016 I became extremely ill overnight; nausea, vomiting, fatigue, weakness, and headaches were my initial symptoms. Then, over the course of a month, I lost 35 pounds (which meant I was down to only 85 pounds at 16 years old). I was so worn down that I had to quit my weekend job, was missing significant amounts of school, and could barely walk or get out of bed.
Then came the neurological symptoms. My mom always said, “it’s like someone was turning down the dimmer switch” on my personality. The once cheerful, silly little girl had become seriously depressed, anxious and irritable. I had so much brain fog I couldn’t form sentences and would forget what was happening in the middle of conversations.
My primary care physician tested me for just about every viral and bacterial infection on the planet, and everything was negative. But a few levels in my blood work raised a red flag and they sent me to a pediatric oncologist. I was nearly misdiagnosed with leukemia.
While all of this chaos was taking place, my mom thought it’d be a good idea to keep track of what I was eating and how I felt. We noticed a correlation between my symptoms and eating gluten, which led us to see a gastroenterologist who begrudgingly ordered an endoscopy to check for celiac disease. Mind you, she did not do any genetic or antibody testing ahead of time. When they didn’t see any obvious villous atrophy, she told me I didn’t have celiac disease and sent me on my way.
This cycle of seeing another doctor, ordering another test, and coming to a dead-end continued for almost a year when a family friend who is a naturopathic doctor mentioned I should’ve been tested for celiac disease genes and antibodies. I had no idea those tests even existed! And when the results came back, it was obvious: I had both the celiac genes and antibodies through the roof.
How long did it take for you to get diagnosed?
Since that first night I became really sick to getting a diagnosis, it was about a year.
Do you believe anything could have sped up your diagnosis? If so, please explain:
More awareness and better understanding of celiac disease! I still can’t believe a physician told me I did not have celiac disease when it had become so obvious. If more doctors knew the signs and were more open to testing for celiac disease early on, it would be so much easier to get diagnosed quickly. I 100% credit my diagnosis to my mom and my ability to advocate for my health.
Describe your experience with living with celiac disease:
Having to eat gluten-free was really a challenge for me in the beginning. Not the actual act of finding and making food (which was also very hard, truthfully), but that I was having to miss out on so much of my social life. As a teenager, all I wanted to do was go out with my friends, grab a pizza, and feel “normal.” Along the same line, family gatherings like Thanksgiving were very difficult because a lot of people couldn’t understand the severity of my diagnosis and why it was so important for me to eat strictly gluten-free. It became very isolating very quickly.
Fast forward a few years to college. To complete my bachelor’s degree I decided to write my thesis on this exact topic: the importance of safe social interactions for those with celiac disease and how culture impacts our quality of life. I spent six months traveling through Europe studying how different countries handle the medically-necessary gluten-free diet when I stumbled upon Italy. I was brought to tears by how easy it was for me to find safe food here. It was such a positive experience that I decided to move to Florence, Italy! I am happier and healthier than I have ever been living here.
Now, a year later, I am the founder of The Celiac in Italy. I teach online gluten-free Italian cooking classes, consult clients on traveling safely in Italy as someone with celiac disease, and act as an English and Italian speaking resource for all things gluten-free Italy. You can find me on Instagram @catacorah or my website www.catalinvarela.com
