I spent this summer anticipating the start of senior year, a period of excitement and new possibilities. However, I didn’t expect these new possibilities to start two months before my senior year. In June, I finally found the answer to my chronic stomach issues and numerous unexplained symptoms, but this diagnosis meant undergoing a significant life change at the age of 21.
Celiac disease requires an adjustment regardless of what age you are, and it is a major learning curve. It also creates a sense of isolation, as most people in your life can’t relate to these new feelings and experiences— especially in college.
Being Celiac comes with many questions, but one of the most common is: What is Celiac Disease?
Celiac disease is a chronic autoimmune disorder that damages the small intestine’s villi and prevents the body from absorbing nutrients from food. The disease presents itself in different ways in each person, and immediate diagnoses are rare and difficult, it’s the only autoimmune disease with a cure: a strict gluten-free diet.
Another question that usually follows the first is: What is gluten?
Gluten is a protein found in wheat, barley, rye, and other grains, and it acts as a binding agent in foods.
While avoidance seems simple in theory, it’s more than just steering clear of gluten, as cross-contamination is another issue. Even the smallest contact with gluten-containing food items can cause someone with Celiac disease to get sick.
When I was told that I had Celiac disease, my innate reaction was to scream, “I knew it!” although receiving this news following an 8-hour shift numbed the full extent of my processing. I spent the first two months after my diagnosis at home, which functioned as a safe bubble where I learned to shift to a completely gluten-free diet. Following this came a sense of relief from the multitude of physical symptoms that I had been experiencing, and I felt the most energetic I had been in years. However, this feeling quickly dissipated as I returned to Boulder to start school.
Being back in my familiar apartment and Boulder itself suddenly became foreign to me. I had to look at everything constantly wondering, “Is this safe for me?” and navigate my day-to-day life and interactions with those I’ve known for years a bit differently. The shift from the shelter of home and experiencing being gluten-free where I could let my guard down to college; where I entered a new realm of processing my world. I suddenly had to fend for myself and self-advocate, which I hadn’t felt the need to do until now.
Maintaining a constant vigilance began to take its toll on my mental health as I began to wear down from the flux of college life, combined with an increased awareness of everything I did or ate.
Going out to eat suddenly became a fear because there are a lot of misconceptions and misunderstandings regarding what makes items gluten-free. When out to my first dinner back in Boulder with my mom, roommate, and her mom I asked if an item on the menu was celiac safe, to which the waiter responded that there was cross-contamination in the fryers but chose to neglect that there was soy sauce in the dish, which is not gluten-free. I was told that the GF label on the menu was for those who are “gluten conscious” and not safe for someone with Celiac. This has been a very common experience for me in my journey so far. Turning the simple and exciting idea of going out to eat, into an anxiety-producing situation that brought up a question of if I should go or stay home.
This change in environment caused me to feel isolated and as if I was living a double life; the one I presented to my friends and family and the one I experienced when I was alone. I spent time alone trying to give myself the space to process, but what helped me the most was strategizing for myself.
Having to advocate for myself was the first and most important thing I needed to do, however, this felt like a big task without being difficult. To get in this mindset, while also facing the new fear of going to restaurants I started out going with close friends or family that could help motivate me to mention that I have Celiac or asking if items are gluten-free. This allowed me to get used to saying it out loud; in a way, the fear of getting sick was a motivator. Once I was able to break the barrier of advocating for the first time it slowly became easier and required less of a conscious effort as I started feeling more confident in my words and my diagnosis.
Since my diagnosis, I have struggled with expressing my feelings and having them understood. However, I learned that I can’t expect perfect comprehension as it’s not a universal experience. Nonetheless, I have learned to give those around me grace, along with myself. I’m still learning how to navigate living with Celiac disease and hope to reflect on these moments as part of a learning experience to eventually reach a point of understanding within myself and my diagnosis.