Describe your life prior to diagnosis:
At 15 I was hospitalized due to extreme weight loss. I went from 99 pounds to 72 pounds. I did stop eating most foods for a while because everything made me sick. I was always on the floor or toilet crying in pain. It felt like someone was ripping out my insides and I couldn’t stop going to the bathroom. During that time I lost so much weight and missed so much school. When I was hospitalized the doctors said it was a good thing because I was days away from organ failure. The doctors suspected I was anorexic or bulimic and did not want to do a celiac disease test, but my mom made them do it.
How did you come to know (or suspect) that you have celiac disease or gluten sensitivity?
They eventually did a test and found that I had some of the markers but not all the markers. So they diagnosed me with a severe gluten sensitivity, since as soon as I ate gluten I was in the bathroom crying and going to the bathroom for the rest of the day.
I was also eventually diagnosed with lactose intolerance. My mom suspected I had both because she has them as well and whenever she ate gluten or dairy she felt the same way. I stopped eating both right away.
Do you believe anything could have sped up your diagnosis?
It would have helped if my doctors actually listened and believed me instead of assuming I had anorexia or bulimia.
How is life after diagnosis?
It can be challenging. I am now married to someone understanding, but my past boyfriends weren’t fully aware and understanding, because they did not have both of my intolerances. It’s hard when I go out to eat with friends, and it was especially hard in college. I would pack my lunches in college and eat breakfast at home, but for dinner if I went out I usually had to pick the restaurant. I have other food intolerance too so it was and sometimes still is a challenge.
