I’m Abby B, a rising junior who has had Celiac for two and a half years. I play multiple sports and go to a small private Christian school, now located at my house because of Covid-19. I got diagnosed with celiac disease when I was in 8th grade and have had it for almost two years now. Since I go to such a small school I am the only one in the high school that has celiac disease and the only one who must eat strictly gluten-free, which is hard because many people and teachers don’t know or remember that I am gluten-free.
Celiac disease is something that with time becomes easy to manage and to live with but those first few months where you are plunged into having to change everything in your entire life, it can feel horrible. When I was first diagnosed with celiac disease in 2018 honestly my main question was just what it meant to be gluten-free. When I went to my doctors because I wasn’t feeling well my mom threw out that I might have celiac disease as an option but almost as a joke (we thought I had mono or maybe Lyme disease) as we were walking in. When I asked her what celiac disease was, I immediately laughed when she said that it meant going gluten-free because before celiac disease I ate at least a box of pasta a week, if not more. I had a bag of goldfish every night as a snack and to fuel up for basketball games I’d eat a sourdough bread bowl.
I loved gluten and I had no idea that there was even a disease that could take that away from me. Two years later as I am writing this thinking back to how I was 100% sure that I could not have celiac disease, I can’t believe how wrong I was and how looking back the clues were actually pointing to that diagnosis.
Perhaps you just were diagnosed with celiac disease, and you should know that the first month or two feels crazy. You attend a nutrition class where they tell you all the things that you aren’t allowed to eat anymore (even things that weren’t obvious to me like Rice Krispies since they use malt flavoring) and how you have to change your diet. After that you have to brave the grocery store, walking up and down every aisle checking the ingredients on every item and it can feel overwhelming, sad, and frustrating. Then you have to go through the process of telling everyone what celiac disease is and what it means for you. Its a whirlwind few months!! But I hope I can encourage you that eventually, it does get easier, things settle down and you get used to being gluten-free and helping those around you understand what it means.
Looking back on when I was first diagnosed, I wish there were somethings that I had done differently or had better resources. One of the big things that was hard was telling my friends. It’s crazy to think that having been diagnosed for maybe a day or week you are expected to explain to your friends what has happened to you and what it means, while at the same time still trying to answer those questions yourself. I wish I had an easier way to explain it to them, or had taken time to talk to them sooner in the process. Just recently I had to go in for some further testing including a second upper and a new lower scope – none of that is easy teenage chit chat. If I had been more open upfront, it might have been easier to explain when I hit a rough patch in my health.
Another thing that I wish had been told is that despite what it feels like when you first are sitting in the nutrition class learning about the hidden dangers in some foods, there are a ton of great gluten-free substitutes for what you used to eat. You will just have to get a little creative and learn to talk directly to the store and restaurant managers.
Lastly, I wish future me could have just told my eighth-grade self that despite what it feels like, it does get better and at a faster pace than you would expect.
Everyone is different and every person’s journey through being diagnosed to your new normal life is different. Maybe you knew what celiac disease was before you were diagnosed, or maybe you were finding out as you were diagnosed. But it gets better and it gets more manageable. Just maybe don’t laugh and think it’s impossible when you are told that you might have celiac disease!