Describe your life prior to diagnosis:
Before diagnosis, I was a mostly healthy child with a huge appetite. I never had trouble eating enough and never had any stomach problems.
How did you come to know (or suspect) that you have celiac disease?
Around 17 years old, I randomly started dealing with a lot of acid reflux, weight loss, nausea and other stomach issues. Looking back, I realize I was also having a lot of headaches, brain fog and fatigue, as well as the start of eczema all over my face, which I’d never had before.
If you were diagnosed, who made the diagnosis?
I was lucky that my mom was worried enough to take me to my doctor, who was extremely detail-oriented and ran tons of blood tests—including ones for 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?
I was lucky to be diagnosed within a year of having symptoms. However, I failed to heal normally on a gluten-free diet and ended up being hospitalized around four months after my celiac disease diagnosis for malnutrition and vitamin deficiencies. I was 83 pounds at 5’3” and 18 years old. I was fed via feeding tube for two weeks and then allowed to try to eat gluten-free and see if I could get enough nutrients.
It took around three years for me to start feeling more normal and to weigh more than 88 lbs, even though I was eating a ton. Today, I still deal with regular stomach problems and other food intolerances.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Describe your experience with living with celiac disease:
I’m extremely fortunate to be able to say that my diagnosis changed my life in many good ways. When I realized no one else was sharing what it was like to live gluten-free in college, I started a blog. Eventually, that blog helped me get several jobs related to writing, social media and celiac disease awareness, and now I’m working at Real Good Foods, which is a gluten-free food brand.
I still struggle with stomach problems and have been diagnosed with IBS on top of celiac disease. But most days, I feel lucky that I can treat my chronic illness through diet.
Is there anything else you’d like to add to your story?
If you aren’t feeling better a few weeks after going gluten-free, please contact your doctor! I’ve never heard of someone else being hospitalized and fed via feeding tube like I was, but everyone heals at a different pace. Honestly, I probably wouldn’t be here today if I hadn’t gotten additional medical support after my diagnosis.
You can keep up with Casey on her blog, Casey the College Celiac.