This is a face of too many misdiagnoses. This is me before I finally had an answer.
My body was wracked and in shambles. Nervous system stressed to the point of strong shaking episodes. I could no longer drive myself more than ten minutes without experiencing massive dizziness and bouts of blurry vision. No food would stay down no matter how much I ate, which resulted in a scary weight of less than 95 pounds. ADHD ruled my everyday, my mind raced constantly, and then there was the pain. A lot searing pain. These things were the norm, and the norm was becoming worse and worse–fast. I thought I would never function in society normally ever again because of what seemed to be eating me alive from the inside out. But I couldn’t find an answer. And I knew I couldn’t go on like that.
I remember feeling incredibly frustrated and ready to give up after doctor upon doctor brushed off my debilitating symptoms, whittling them down to things like stress, “being a college student”, irritable bowel syndrome, anxiety, depression, just “getting older”, and even an eating disorder. Well of course I had an “eating disorder”; food just went in and came right back out…unintentionally! The fact that I saw half a dozen doctors that misdiagnosed me and failed to look for the root cause, (one that isn’t “solved” with a pill) frankly scares me. It scares me more today than it even did back in that moment because at the time, I didn’t realize that I really could have died from this.
Luckily, my parents were able to help me find a doctor who finally listened to all of my symptoms. That doctor turned my life and health completely around in a matter of weeks with the first mention I’d ever heard of Celiac Disease and gluten. While grateful, I questioned why I was not correctly diagnosed when my first symptoms showed as a toddler. I was nearly 21 years old when the diagnosis came, and it came at the breaking point. This is not acceptable to me, and shouldn’t be to anyone.
May is Celiac Disease awareness month. I see it as my moment to shine and be proud of what I’ve overcome. I’m healthy and alive today, living in harmony with my lifelong disease. While I often advocate for awareness throughout the year, I’m taking the special opportunity today to share my story again in hopes that the more we share, the shorter the diagnosis time will become. According to the National Foundation for Celiac Awareness, the average time it takes for someone to be correctly diagnosed with the disease is 6 to 10 years. Misdiagnosis and no diagnosis can cause permanent damage, cancer, and can kill.
Healing can only begin after answers are found. Talk to someone about Celiac Disease today. Read about Celiac Disease on the NFCA website, or follow the links in my Resources page. And don’t forget to hug a lovely Celiac near you
Happy Celiac Disease Awareness Month!