May is Celiac Awareness Month: My Celiac Disease diagnosis journey

By | May 1, 2024

I’m a Celiac, 23 years gluten-free and counting

Celiac Disease diagnosisMy journey to a Celiac Disease diagnosis was long and arduous. I was miserable for the better part of 12+ years. I dealt with immense pain, unpleasant gastrointestinal issues, and a degenerating body. And I was only in my 30s!

Eventually my body gave up. I was rushed to the hospital 23 years ago. It was the summer of 2001. I endured all sorts of poking, prodding, and medical testing. Finally, after six days, I received the Celiac Disease diagnosis that changed my life, for better or worse.

The summer of 2024 marks my 23rd anniversary of going gluten free. And I couldn’t be more thankful.

Persistence is key in getting an accurate Celiac Disease diagnosis

For those out there who may be dealing with similar-sounding health issues described here or in the posts linked below, I encourage you to persevere and be persistent with your medical professionals. I regularly visited my PCP and various specialists to which I was referred. Unfortunately no single doctor looked at all my issues holistically to connect the dots and piece together my puzzle.

Thankfully, awareness of Celiac Disease and gluten intolerance has dramatically increased since my diagnosis in 2001. Huge accolades go to the Celiac support groups and foundations and their many awareness-building campaigns, like Celiac Awareness Month, which is celebrated every May. An increasing amount of media and press coverage also helps.

But, we’re still a long ways off as a country in regularly and routinely testing for Celiac Disease. It’s unclear whether it will ever become reality in the U.S. as in other parts of the world. But hopefully, at least, an accurate diagnosis will no longer take 12+ years of suffering and wondering “what’s wrong” as it did for me a few decades ago.

Sharing My Journey

I’m now going to back-pedal some 23 years, and open up publicly to share some details about my more than a decade-long journey to a Celiac Disease diagnosis.

For those who can relate, rejoice that we finally discovered “what’s wrong.”

For those of you who haven’t yet been tested and possibly diagnosed: If my story sounds familiar, ask your doctors to run more tests. Giving up bread, pasta, cookies, cakes, brownies (sigh…) isn’t as bad as it sounds.

Read my journey to a Celiac Disease diagnosis