Ilana CohenThe Voices of Celiac Disease

“At the time, I was perplexed that something could be harming my body without showing any noticeable signs. In hindsight, I feel very lucky to have been diagnosed at a young age.”

A photo of Ilana smiling on a bridge.

Describe your life prior to diagnosis.

My family’s time together was very centered around food: cooking, traveling for food, and visiting different restaurants. As a young kid, I would eat everything, but closer to my diagnosis I found myself getting pickier about the foods I would eat.

How did you find out that you had celiac disease? Did you suspect it beforehand?

I was eight when I was diagnosed, and I was generally in good health. My pediatrician raised flags at a regular appointment when my growth was slipping off of the curve. I was referred to a specialist, tracked my food intake for a few weeks, and got several blood tests.

In hindsight, I feel very lucky to have been diagnosed at a young age, but at the time I felt lost navigating my diagnosis and a gluten-free diet.

How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?

It took only a few months for me to get my diagnosis. One challenge that my family experienced was not knowing whether or not to get an endoscopy for diagnosis, or if the conclusion drawn from blood tests was sufficient.

Describe your experience living with celiac disease:

I had the experience of being diagnosed when I was young, but not too young to be aware of what was going on. Silent celiac is confusing even for adults to understand, and I struggled to comprehend it at the time—I was perplexed that something could be harming my body without showing any noticeable signs. I did not fully understand the weight of the diagnosis, and I thought it to be temporary.

In the years after I was diagnosed, I did some searching about celiac disease on the internet. After seeing the long list of daunting symptoms, I became very stressed about my diagnosis and its implications. I immediately assumed the worst, which consumed my thoughts for many hours of the day. However, my level of caution did not catch up to these anxious feelings for several years, as there was a significant learning curve to understanding celiac disease and cross-contact.

At different points in my life, I have struggled with having a restricted diet. Specifically, eating primarily at dining halls and cooking in shared kitchens during college was challenging. Group traveling, or any social events, are often very challenging for me, though I try not to limit my experiences because of it. I also struggle to find a reasonable balance between avoiding cross-contact and avoiding eating altogether, especially as someone who doesn’t experience immediate symptoms. This can result in anxiety around food, which makes eating in restaurants a very stressful experience.

At this point in my life, working full-time and living with one roommate, I feel I am able to handle my celiac disease well—I mostly cook my own meals, and I am generally able to seek out gluten-free food and advocate for myself.

Since diagnosis, I’ve seen the gluten-free world change significantly. Meeting others with celiac disease, seeking out gluten-free food around the world, and being involved with Beyond Celiac have shifted the way I see my diagnosis and brought gluten-free joy to my life.

What would a cure mean for you?

A cure would mean being able to travel without concern for food, exist in social settings without anxious thoughts at the forefront of my mind, and, above all, have a greater sense of security about my long-term health.

What’s next?

I have always loved connecting with celiac disease and gluten-free peers, and helping newly diagnosed people adapt to the diet. When I went to college, I met many peers with celiac disease, and I organized gatherings to have GF food and talk about our experiences. I also arranged meetings with dining services to advocate for better labeling and GF options in dining halls. I hope to continue to build my gluten-free community and advocate for wider understanding of the needs of those with celiac disease.

I currently work in medical research in Philadelphia and am an aspiring mental health professional. I’m interested in the intersection of mental health and physical health. I love talking about the mental health implications of celiac disease and other autoimmune disorders. I also love to dance, cook, and document my adventures on my GF food account, @galsagainstgluten!