My story begins at a time when information about celiac disease and eating gluten-free wasn’t at your fingertips; a time when you couldn’t ask Siri, “what’s celiac?” or “how to eat gluten-free” and get the answer read to you in your car, while your phone is also providing you with live traffic and weather updates. Whether you found the Celiac Disease Foundation due to yourself, a loved one, friend or colleague being diagnosed, I understand what you’ve been going through.
If you’re reading this letter, then you have been affected in some way by celiac disease and/or a gluten-related disorder. Whether you found Celiac Disease Foundation due to yourself, a loved one, friend or colleague being diagnosed, I understand what you’ve been going through.
I’ve always felt that it’s incredibly beneficial to connect with others who share similar experiences. So today, I’d like to share my diagnosis story with you, with the hope that you’ll join me in helping to prevent the needless suffering caused by undiagnosed celiac in millions of people in the U.S. and beyond.
My story begins at a time when information about celiac disease and eating gluten-free wasn’t at your fingertips; a time when you couldn’t ask Siri, “what’s celiac?” or “how to eat gluten-free” and get the answer read to you in your car, while your phone is also providing you with live traffic and weather updates.
The year was 1988 and I was just five years old. I would wake up every single day with a horrific headache and agonizing stomach pain. Most days, I would try to work through the pain and go to school, but there were many mornings where the pain was so severe that I simply couldn’t get out of bed.
Like most kids, I loved being outdoors and playing sports with friends, but when you’re that age, it’s hard for your friends to understand that you can’t play baseball or basketball with them because you aren’t feeling well. Not to mention the fact that I was constantly picked last in sports due to my small stature, which I would later find out was a result of undiagnosed celiac.
Soon, the head and stomach pain took over my life – school, sports, friends and fun all became secondary as we desperately tried to figure out what was making me feel so sick. This is when the seemingly infinite number of doctors visits began.
For the next two and a half years, I practically lived in doctors’ offices – something that no child should ever have to experience. I was put through test after test and ultimately, misdiagnosed at every turn. The fear of the unknown and frustration that came along with each misdiagnosis began to take its toll as my health continued to decline.
Finally, after visiting about 20 specialists throughout California and exhausting every resource that we had, a doctor described the symptoms of something called celiac disease and recommended that I get tested.
Sure enough, the biopsy results came back and I was diagnosed with celiac disease. Although it was an exhausting and tiresome process, I was fortunate to get a concrete answer as to why I had felt so sick for so many years.
And that’s when we met Elaine Monarch, who would forever change my life.
Sure I was young, but I definitely remember meeting Elaine. My first memories of her were of an incredibly generous, compassionate woman, who truly cared about my health and well–being.
Elaine helped us to understand celiac disease and what it meant to live a healthy gluten-free lifestyle. Soon after meeting her, Elaine invited my mom and me to attend one of the first ever Celiac Disease Foundation education conferences, and I was in heaven! My mom focused on all of the educational aspects and great speakers, while I ran around eating everything in sight! After all, I had finally found a place where EVERYTHING WAS GLUTEN-FREE! It was truly amazing, and something that I’ll never forget.
After the diagnosis, and with the help of my family, Elaine and the Foundation, I began to feel much better and started to feel like a normal, healthy kid again. I then went on to play high school basketball and water polo and later graduated from USC. Sadly, I lost touch with Elaine throughout these years.
Post college, I started a few online businesses in the gluten-free space and began to blog about living gluten-free in hopes that my story might help someone going through similar health issues. Within a month of launching my first website, I received an email from Elaine that said, “Chad, is that you after all of these years?”
I was so glad to reconnect with someone who had such a positive impact on my life.
Elaine then invited me up to the Celiac Disease Foundation offices, where I was eventually asked to sit on the Board of Directors for the Foundation. Of course, I accepted the invitation with great enthusiasm.
So here we are 25 years after my diagnosis and first encounter with Elaine, and I am fortunate enough to see Elaine on a regular basis. She’s still the same selfless, caring, and giving person that I remember when I was so young and
I’m privileged to be able to now call this incredible mentor my friend.