Describe your life prior to diagnosis.
My life prior to diagnosis was miserable and uncomfortable. I would get sick after eating any type of meal and had extreme anxiety with no cause. I felt that the mental effects were more significant than the GI effects. Severe brain fog and anxiety were the worst, causing disruption in my everyday life as a teenager.
How did you find out that you had celiac disease? Did you suspect it beforehand?
The symptoms were unbearable. After seeing multiple doctors in my hometown of Pueblo Colorado who said, “You have a stomach ache, everyone gets stomach aches!” I was forced to go to nearby city Colorado Springs, where I was diagnosed at the children’s hospital after bloodwork and a biopsy.
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?
It took one year and nine months to be diagnosed. My biggest challenge was getting doctors to believe I was in pain. It is absurd how many doctors will dismiss a sixteen year old girl’s pain.
Do you believe anything could have sped up your diagnosis? If so, please explain:
More compassionate and understanding healthcare providers could have significantly impacted the timeline of my diagnosis.
Describe your experience living with celiac disease.
I have been living with celiac disease for six years now. About one year after diagnosis and eating 100% gluten-free, I felt like myself again. No more brain fog and almost no anxiety or panic attacks. It is a struggle to live with, but I manage very well for being in college and navigating my way through life.
What would a cure mean for you?
A cure to me would be for doctors to listen to their patients and give them the help they need, because our lives depend on it. I can deal with eating small bread!
