The Shock of a Lifetime
How I Spent Nearly 7 Years Thinking I Had Celiac Disease
Almost seven years ago now, I was sicker than I’ve ever been. I’ve spent most of my life being sick, but this was different. I got MRSA in my jaw, caused by an abscessed tooth. From the drastic swelling and many surgeries I had to undergo, I suffered nerve damage and developed TMJ.
On top of dealing with these adverse effects, my migraines worsened to a level they never reached before. I was in the emergency room nightly seeking any sort of relief from the pain possible. In addition to that, everything I ate was making me sick.
No one knew what was wrong with me; I went to specialist after specialist with no answers.
I had a TMJ specialist, a neurologist, a psychiatrist, the list goes on and on. No one knew what was wrong with me. I tried medicine after medicine and nothing helped the migraines and nothing helped my sickness.
Eventually, after finding out my aunt and her son had celiac disease, we started exploring that option. However, we made one major mistake. Instead of talking to the doctor first and getting tested, we tried eating gluten-free. When we saw results, we assumed all the signs were pointing to celiac.
It made sense; I was always getting sick as a kid and food always made me feel horrible (I live in the South, so most of our diet was comprised of gluten). I had regular migraines, joint pains, and chronic dental issues. All signs pointed to celiac.
But we never got the test.
The most important part of this story is that we never got the official diagnosis; we never got tested.
Fast forward to 2018.
For about six months, I noticed some digestive problems similar to what I was dealing with before going gluten-free. After going out to dinner with a fellow celiac who got ill from eating the same thing I ate from which I felt nothing, I got concerned and made an appointment with a GI.
Two endoscopies and a round of genetic testing later, we discovered that not only did I not have celiac, but I also didn’t have the genes for it at all. After seven years of thinking I had celiac disease and eating a strictly gluten-free diet, I found out what I thought was impossible.
I didn’t have celiac disease.
I couldn’t believe it; I thought this was impossible. My life had completely changed. But that’s not the point of this story.
No, the point of this story is more a cautionary tale. If you think you have celiac disease, you absolutely, positively have to talk to your doctor first and undergo the proper testing before switching to a gluten-free diet.
Why the test matters
The celiac test can only be accurate if you have gluten in your system. In order to get an accurate diagnosis of celiac
Don’t be like me and live seven years sticking to an incredibly strict diet you didn’t have to, all the while ignoring the real condition at play. Talk to your doctor immediately and get the proper testing done.
In light of this news, we’re going to be making some changes to the blog. The research done for all the celiac posts is still credible and valuable information and I don’t want to waste the knowledge I’ve accrued over the years when it could help someone just getting started in this lifestyle. With that being said, I don’t want to remove any of the articles or stop writing on celiac disease. However, we want to expand the blog.
We’ll be undergoing some changes and expanding our content. We hope you’ll bear with us through this time and enjoy the updates when we’re finished.