Describe your life prior to diagnosis:
I struggled with symptoms for my entire life before diagnosis. At a very young age, I received intravenous iron infusions to treat my anemia. I was a very active kid who loved to play sports, be outdoors and perform self-written music, but once I reached the age of 10, a big shift started. My desire to compete and keep up with my peers took a sharp decline when I was hit with an enormous amount of fatigue that only seemed to get worse as I got older. Anxiety became a good friend of mine, slowly emerging into a panic disorder which hindered every aspect of my life.
For nine years, my doctor said that all of my symptoms were due to my anemia and a predisposition to mental health issues. Psychiatric medications gave me virtually no relief. I had terrible brain fog, and by the time I entered high school, I complained of joint pain and exhaustion every day. Not knowing any better, the people who surrounded me assumed I was just a lazy teenager with too much on their plate, and despite asking my doctor for guidance, their only advice was to “do better.”
How did you come to know (or suspect) that you have celiac disease?
Just before graduating high school, I started having gastrointestinal symptoms, which I chalked up to my anxiety. I became a completely unrecognizable person during the end of my senior year and my first semester of college. Truthfully, I saw no purpose in life while enduring such pain that no one believed was truly there. A breaking point came in April of 2021, where I lost 25 pounds from my already thin stature. I couldn’t leave my house without fainting or drifting into a state of panic and confusion. I hated all of the things I used to love, and started researching alternatives to pursuing a college degree.
If you were diagnosed, who made the diagnosis?
I made a pleading call to my pediatrician’s office where I made an appointment with Dr. Karen Maule, MD who I had never met. I mention her full name because for the first time in my life, I walked into an office where my complaints were taken seriously. I would not be here without Dr. Maule’s diligence. She rushed a full panel of bloodwork and called me the following morning, explaining that my IgA-tTG test came back astronomically high. An immediate endoscopy confirmed that I had celiac disease.
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?
I almost lost my life to CD after being misdiagnosed for nearly my entire life. I’m now 20 years old and received my diagnosis just over a year ago. The challenges that I faced, other than those that I’ve already spoken about, could go on for a lifetime. Instead of dwelling on them, I try my best to focus on the progress I have made and the things I have yet to accomplish on my journey of recovery.
Do you believe anything could have sped up your diagnosis? If so, please explain:
My diagnosis would have been much more timely if I had been taken seriously by other doctors. I think that being a teenager was to my disadvantage, as it was easy for people to blame my symptoms on puberty and stress. I hope that my story can help other young people understand that they know their bodies the best, and that they should always trust their instincts. Just because you’re young does NOT mean that you cannot advocate for yourself.
Describe your experience with living with celiac disease:
My journey does not stop at diagnosis. Living with CD is a much harder obstacle than I could have ever imagined, and my road to recovery will be long and strenuous. But I can now see myself having a fulfilled life. My family and friends have been the greatest support system who are always asking questions and learning with me as I navigate this new life. Working as an intern with Beyond Celiac has taught me a tremendous amount about CD, how to support yourself and where to find the best resources for guidance.
Is there anything else you’d like to add to your story?
There is so much more to be done for the CD community. This autoimmune disease must be recognized as such and not as a “wheat allergy,” which is what I thought of it as for my entire life before being diagnosed. By sharing my story, I do not seek sympathy or expect complete comprehension from all who read this. But I do hope that someone out there can learn from what I have been through, and that my fight towards a healthy life can pioneer a movement for others who have similar stories.