Describe your life prior to diagnosis.
I was sick all the time with things like infections, bronchitis, laryngitis, skin rashes, and stomach issues. I also experience severe fatigue after eating gluten to the point where I’m immobile for a day or days. Severe stomach pains and vomiting sometimes as well.
How did you find out that you had celiac disease? Did you suspect it beforehand?
A doctor tested my blood for TTG-IGA, and my results were off the charts. Finally a gastroenterologist did an endoscopy and suspected gluten sensitivity. Celiac disease wasn’t well known at the time, so I did not get an official diagnosis in 2009 at age 19, but was diagnosed with celiac disease years later at 22 by another GI specialist.
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?
22 years. I was sick all the time. Sick of being sick. No one really understood what I was going through or could help me. My mother was the only one who kept taking me to doctors until we got some answers. Many doctors didn’t know what celiac disease was, therefore they could not help me.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Yes, awareness! No one knew what celiac disease was when I was a kid and hardly anyone knew what it was still when I was diagnosed as a young adult.
Describe your experience living with celiac disease:
With little information at the time of my diagnosis and few food options at restaurants and social gatherings, it was extremely hard to manage it. I became socially isolated, and had to teach myself how to cook so that I could survive during college. I’m constantly educating family and friends, which is very difficult.
Mistakes still happen sometimes, but not as often anymore. Now it’s gotten easier. I still travel with a lot of my own foods including fruits, vegetables and things like gluten-free crackers so I’m never stuck somewhere without GF options and left hungry. It’s a daily challenge but I prefer to be happy, not sick, and to live a healthy life.
What would a cure mean for you?
After so many years of struggling an actual cure would mean the chance to live a normal life and remove the constant fear and worry I live with every day.
Is there anything else you’d like to add to your story?
I am a doctor, a pharmacist specifically, and I went into the medical field so that I could help myself learn about the body and figure out what was happening to me. I try to help others as much as I can with the knowledge I have gained and I would love to share my story on a wider platform!
