Describe your life prior to diagnosis.
Prior to diagnosis I was a picky eater, but I was still always eating amazing food. I was also a professional dancer with a very active lifestyle. Then, I got very sick and had debilitating symptoms for six months.
The nausea, pain, bloating, and fullness were too much for me at times. There was a point where I lost 32 pounds in just two months because I couldn’t stomach anything but liquids. I lived off Ensures [meal replacements] and it felt like I would never come out of it. Waiting for a diagnosis and just holding onto that hope was the hardest part.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I found out after a blood test, endoscopy, and another blood test to confirm that I in fact have celiac disease.
I did not suspect celiac disease at all. I love bread and other gluten-filled foods and they had always been my safe foods. I never thought in a million years that they could be making me ill.
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 six months for me to get diagnosed. It was very challenging for me to have to try to work and live a normal life while I was so sick. I spent weeks in bed, working from home, and trying so hard not to let my performance at work decline.
It was very lonely to be sick and see everyone around me eating these amazing foods and experiencing life with big smiles on their faces. I never truly realized before how much of our human connection is surrounded by food. I felt like life passed by me and I lost those six months in time, especially during the holiday season.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I think I would have received a diagnosis sooner if my original GI doctor had considered celiac disease as a possible diagnosis. She originally diagnosed me with gastroparesis, another difficult illness.
I think if more doctors tested patients, this would help so many suffering people. Doctors need to stop blaming anxiety and stress without checking things out.
Describe your experience living with celiac disease:
Now that I live with celiac disease, I am already seeing an improvement in my quality of life and I am so thankful for it. This is still new for me, but I can’t wait to see what’s in store. Being able to eat again is such an amazing feeling that I didn’t think I would get back. It’s crazy to see how rapidly I have been bouncing back with the elimination of gluten and cross-contact as well.
What would a cure mean for you?
It would bring me so much peace. As of right now, if it’s not certified or a gluten-free dedicated establishment, I live in fear. I don’t want to go back to feeling the way that I did. Those were days and days filled with pain and depression. A cure would make it so we don’t have to live in fear.
