Mobile menu

Quarter Life Crisis: Being Diagnosed with Celiac Disease Half-Way Through College

August 19, 2014

Quarter Life Crisis: Being Diagnosed with Celiac Disease Half-Way Through College

Hayley Johnston of the University of Illinois shares her experience of being diagnosed with celiac disease while away at college.


By Hayley Johnston of the “Hayley Here” blog

Hayley JohnstonImagine living the first 19 years of your life being able to eat anything and everything (except my mushroom allergy, but that could have been worse. And then one day you go to having one of the most restricted diets out of anyone you know.

It was the summer before my junior year of college at the University of Illinois and I got sick, really sick. I had been dealing with some stomach issues for the past two and a half years but never at that caliber. My Aunt on my dad’s side has had celiac disease for over 20 years and we knew that the disease could run in families so my mom and dad had a blood test done to see what was going on with my body. My family and friends were very supportive during this trying time for me and I will never be able to thank them enough.

When we got the call that the blood test was positive, I was in utter disbelief and I had it in my mind that it was a false positive and that the biopsy would come back with something else. The idea of a biopsy was very scary to me but I was relieved that the doctors and nurses were so comforting and that it was a very easy procedure. The results took almost two weeks to come in and I tried to stay as positive as I possibly could, and admittedly stuffed my face with all the pizza rolls and McDonald’s McDoubles that I could eat, even though I was fairly certain they were what was making me so sick.

I came home from work one afternoon to a very somber look on my father’s face, I immediately knew something was not right. When he gave me the news I broke down and cried for a very long time, knowing my life was about to change forever. It was a hard adjustment not only for me but also for my whole family. My mom and dad hated sending their baby back to college when I had no grasp of my disease. I am not going to lie; dealing with this change in my life was very taxing on my emotional well-being and sometimes even over a year later I still get upset when I watch my friends eat some of my old favorites with such ease. What helps me stay positive, though, is the fact that I feel 100% better now that I have gone gluten-free.

It’s completely possible to live a normal college life while adhering to a gluten-free lifestyle. There are always going to be bumps along the road no matter the journey you’re on. I was lucky to have a chef in my sorority house that was well versed in gluten-free diets and that helped me understand what I could and could not eat. Coming up with ideas to cook for myself is hard because sometimes I miss how easy it was to pop some of my favorite frozen foods in the oven, but this change in my life has helped me start eating a more balanced diet than before.

This diagnosis is something I never imagined was going to happen to me, but I am lucky to be surrounded by the love and support that I have to help me get through the toughest days. I’ve learned through everything that I have to stand up for my disease and myself so that I can stay healthy and happy in all aspects of my life.

– Hayley Johnston, University of Illinois

Think you may have celiac disease?

Symptoms Checklist
OUR PARTNERS