Describe your life prior to diagnosis:
I showed no signs of celiac disease for the first 14 years of my life. Suddenly, right at the end of my freshman year of high school, I was inexplicably sick every time I ate. I missed weeks of school and on most days had little to no energy.
How did you come to know (or suspect) that you have celiac disease?
One day the symptoms were so bad my dad decided to take me to a doctor to run some tests. The bloodwork showed signs of celiac disease. They told me to continue eating food normally (including gluten) until my endoscopy so that they could accurately read my biopsy. A week after the endoscopy, I received a phone call from my doctor, who confirmed that I had celiac disease.
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?
My symptoms started late April of 2017 and I did not have an official diagnosis until August of 2017. I struggled that whole summer because I was instructed by my doctors not to follow a gluten-free diet so the results from my endoscopy would be accurate. I was in a lot of pain, and I had a feeling the procedure would just confirm my suspicions.
It was only a few months but the days were very long. Once I got my diagnosis I was honestly just very relieved that I wouldn’t have to endure the pain any longer and that I was able to get an answer instead of having to do more tests.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I had a relatively quick turnaround compared to most people, so no, I would not say that.
Describe your experience with living with celiac disease:
Living with celiac disease is no piece of cake (literally). The first three years after my diagnosis were absolutely miserable. I was in and out of doctors’ offices so much that the nursing staff recognized me before I even checked in. I struggled with anemia, fatigue, nausea, severe anxiety and depression, abdominal pain, migraines and so many other symptoms.
It made school extremely difficult because I always felt so distant from my peers. Not only was I physically sick all of the time, but I could no longer participate in fun events like bake sales and surprise pizza days. I also felt like I had to hide that I was feeling so sick all of the time. All of my symptoms were internal and invisible, so it was difficult for people to understand why I was more absent than I had been before my diagnosis.
I slowly learned to be more open about my celiac disease, and strived to educate those around me as much as I could. I am doing so much better now, with only occasional symptoms from cross-contact or accidental exposure.
Now I’m halfway through my collegiate education and pursuing my dream job with opportunities lined up for myself post-graduation. I never thought I would be able to get to where I am now with the life I was living a few years ago. Although celiac disease still affects my everyday life, I no longer allow it to consume me. I am stronger than my celiac disease.
Is there anything else you’d like to add to your story?
I want those who are newly diagnosed—or those that suspect they may have celiac disease—to know it gets easier. It will seem scary, but there are so many support systems, research, and guides out there to help you along this path. You are not alone.
