I always feel a slight tinge of jealousy when people say they’ve been diagnosed with celiac. I know, I know; that sounds weird. Why in the world would I be jealous? Having Celiac Disease today seems like a piece of cake (pun intended). I only wish that my diagnosis had come at such an opportune time, because those with Celiac Disease today don’t have to grow up with the same struggles that I had to. While I am more than happy for them, there is still a small part of me that wishes being gluten free had been as normalized for me as a child as it is now. Today, newly diagnosed Celiacs get to begin in a world that’s already mastered the gluten free lifestyle. Many of us live among friends and family who already have a general idea of what gluten is, and heck, they may even have Celiac Disease themselves.
A brief timeline of my gluten free journey
As an infant: I was sick. My parents didn’t know what was wrong with me. This consisted of a lot of trial and error, frustrated parents who didn’t know what else to do, and doctors still unfamiliar with my symptoms.
Early childhood – Diagnosed with Celiac Disease at this point, but I still had close to no options for food. Many times this meant my family would just not go tocertain restaurants because there was very little to nothing that I could eat. I have memories of my mom making me a “to-go” plate of food before we’d leave the house, just so I could have something to eat whenever we’d get dinner out with friends or family. I also remember the disappointment in my parent’s faces after spending loads of money trying the newest gluten free item, just to have our hopes let down when once again when it tasted like cardboard or styrofoam.
Elementary/middle school: This was probably the most awkward time for me. At an age when you’re trying to form your own identity, having a food allergy doesn’t really help. Celiac Disease almost became a part of who I was and at times it made me feel like a spectacle. From questions asked by curious classmates and parents who didn’t understand why I couldn’t eat normal foods, to classroom parties where teachers would have to set something aside or have something “special” for the one kid who can’t eat what everyone else can, it seemed like every activity that I was a part of just reinforced the idea that I had food allergy, and in other words, I was different.
High School – This was an exciting stage, like, the most exciting. Celiac Disease and gluten-free diets in general become more and more common during this time, and restaurants begin to recognize the need to have options for those with dietary restrictions. Both restaurants and grocery stores were becoming more familiar with this part of the population. Every other week, I’d discover a new restaurant started selling gluten free pizza crusts, or the frozen food section in the grocery store now sold gluten free dinner rolls, and the like. For once, my family and I didn’t have to make everything ourselves anymore! If I needed bread, I didnt have to make it, i could just run to the store and buy a loaf. Again, all the new items probably ripped a hole in my parents’ wallets, too. But they didn’t mind so much. Finally, I was enjoying gluten free food and they were happy for me. An $8 loaf of bread was suddenly worth it, to see the look on their child’s face to be able to taste something she spent years without.
College, today: I’m 22 years old now, which means I’ve gone 22 years of being gluten free. I’ve seen the market expand dramatically throughout the years. I count myself so lucky to go to James Madison University, which has excellent staff who take extra care to provide options for gluten free students. Today, I can walk up to the food counters and request that my sandwich be made with gluten free bread, without hesitation. I have so many options now and I’m beyond thankful.
What this experience has given me
As dramatic as it sounds, Celiac Disease has had a part in shaping the person I’ve become today. When I was younger, it most definitely felt like a burden. Already a shy child, I was constantly asked what was I eating, how did it taste different (as if I knew the alternative), what was wrong with me, etc. Every meal I ate, someone had something to say. Someone had to point out that meal wasn’t quite the same as everyone else’s at lunch time. This was so uncomfortable for me.
But, the industry for gluten free foods has grown, as have I. I’m extremely grateful to have parents who made sure that me not eating was never an option, and for always making sure to take care of my health before their own.
In terms of my personal character, Celiac taught me early on to have patience. Patience that not everyone understands what’s going on with you, and it’s okay for them to ask questions. Patience in trying new things, and being aware that they may not always have the hoped-for outcome, but being willing to try again.
It also taught me preparedness and responsibility. I honestly think this contributed to my being the “mom” in my friend group! I’m always prepared. In addition to Celiac Disease, I am also allergic to nuts and shellfish. Because allergic reactions are possible and potentially fatal, I always made sure I carried around Benadryl, and sometimes an EpiPen wherever I’d go. But it taught be to be alert to my surroundings, and to ask questions in order to make sure the food I ate was handled cautiously.
Having Celiac Disease throughout the years has been anything but discreet, but it has impacted the person I am today, and for that I am grateful!