Describe your life prior to diagnosis:
I led a fairly normal life prior to my diagnosis. I had very little knowledge of celiac disease, and never thought that I would get it.
Once I graduated college, I started to notice symptoms such as constant fatigue, mood problems, brittle nails, gassiness, bloating and nausea. I also gained a significant amount of weight, which I thought was contrary to the stereotype of someone with celiac disease, but everyone’s bodies are different.
How did you come to know (or suspect) that you have celiac disease?
I had diarrhea for around six months straight. I thought it was because I was just stressed, but I realized something wasn’t right, so I reached out to my doctor. After various tests to see what may be causing the diarrhea came up clean, she referred me to a gastroenterologist. The GI ordered a blood test, which revealed extremely high levels of antibodies indicating celiac disease. Then I got a colonoscopy and endoscopy done, which confirmed my diagnosis.
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 started noticing symptoms in 2017. My symptoms became progressively worse over time, and I was diagnosed in 2019. I consider myself fortunate that I was diagnosed as quickly as I was. In 2019, I reached out to my doctor with concern and in a matter of months I received tests that confirmed my diagnosis. I’m thankful to have doctors who took my concerns seriously.
Do you believe anything could have sped up your diagnosis? If so, please explain:
If I would have listened to my body and reached out sooner, that would have sped up my diagnosis. I put my health on the back burner and put off seeking treatment because I was so stressed in my life at that time.
Describe your experience with living with celiac disease:
Living with celiac disease is a near constant struggle. I live in a shared household, and I attempt to go out to eat, but I’m always vigilant about getting glutened. I have to put so much time, attention and energy into protecting myself.
My work provides doughnuts and bagels on a weekly basis, and sometimes pizza parties. I miss eating and sharing food with others without having to worry about it. The social aspect takes a significant toll on me. If it was easier to live with this dietary restriction from a social standpoint, and if I could feel less like an outsider, that would really help.
Despite having a diagnosis for three years and eating gluten-free, I’m somehow still getting glutened. My antibodies have gotten better but are still very high. It’s very frustrating to have made all of these sacrifices and not even be 100% better yet. I’m also to this day still learning all the nuances of what I can and can’t eat, and I run into surprises. It’s very confusing and I learn new things everyday.
What would a cure mean for you?
A cure would mean EVERYTHING to me. To be able to eat and enjoy life with my friends and family without feeling left out. To be able to eat what I want and not get sick. It would significantly change my quality of life for the better. I can’t even imagine the joy I would feel if a cure is found.
