Describe your life prior to diagnosis:
My life prior to diagnosis was normal and healthy. I was a performer and had even gotten the opportunity to sing at the US Open and was the only girl called back to sing there a second time, where I opened up for Carole King with the song, “America The Beautiful.”
How did you come to suspect that you have celiac disease?
It began when I started to forget lyrics to songs, which was unusual for me since I had never experienced this problem before. This ultimately affected how well I did in my auditions. At one point, I had tried out for Broadway and was against only one other girl for the role. However, at the final callback, I forgot the lyrics to the songs, which didn’t make me look good and I ended up not getting it.
From there my health continued to decline until one morning I woke up and couldn’t feel my legs. I was also suffering from a terrible migraine. My mom carried me into the car and drove me to the hospital, where I eventually left with no answers.
I didn’t experience any GI issues in my diagnosis journey, but toward the end I practically stopped eating due to not feeling hungry.
Who made the diagnosis?
My mom truly diagnosed me, but my pediatrician is the one who medically did.
It took me a total of four months to get diagnosed, which I feel incredibly fortunate about considering the average amount of time it usually takes [6–10 years]. As mentioned before, my mom truly diagnosed me. Desperate to find answers, she did her own research and found a case where a boy had experienced similar symptoms with no GI issues and had celiac disease. She insisted that my pediatrician test me, but he refused. He said that his professor told him that he would never see celiac disease in his lifetime. After continually pushing to get me the test, he finally gave in and administered the test. My results were off the charts. I got an endoscopy, which confirmed the diagnosis.
Just to backtrack a little, I should mention that during this whole span of time from when I first started experiencing symptoms to my official diagnosis, there were many doctor appointments and hospital visits—more than I could count. I always left with no answers and was told by many doctors (many times) that my symptoms were all in my head and that it was just anxiety. In fact, I was actually put on anxiety medication for it.
What’s your life like now, living with celiac disease?
My journey with celiac disease has been a time of learning and discovery, at best. At the start, it was incredibly difficult to navigate because there was limited awareness about the disease, extremely limited food options and very few resources available at the time. For this reason, I felt more alone in what I was going through and more deprived of food.
Fast forward to today, the increased availability of all things I mentioned has made living with celiac disease much easier to live with than before. This isn’t to say that it’s not difficult to live with now, because it still has its many challenges. However, looking back at how it used to be, we have come a long way and it is far easier to manage and deal with.
