My Celiac Story

About ten years ago, I had a routine blood test done. I went right back to school and unsurprisingly, nearly passed out. I expected to go to the nurse’s office, be given some juice or something, and wait twenty minutes. I was put in a wheelchair and sent home. I suppose the nurse could tell something was really wrong. Later that day, my mom got a call from the doctor. I was anemic and it made sense that I’d pass out after a blood test. I had been feeling faint before but didn’t say anything until it hit it’s worst yet after the blood test. And I kept feeling faint. Over and over again, for years. At first, it was ignored and I was told to get my iron levels up. Then they said my iron levels were not low enough to cause this much trouble and sent me to a myriad of specialists. There were some problems with my heart rate, but they didn’t correlate with when I was feeling faint. They tried to test me for a seizure disorder, but they only triggered migraines. As you can imagine, I was extremely frustrated. Finally, I met my now primary doctor. He wasn’t 100% sure what was wrong, but he gave me instructions such as drinking tons of water and other tricks that are now second nature. Between that and starting to drink coffee, I was able to keep myself alert. I slowly started to have stomach issues but ignored them at first.

…..

Fast Forward to the 2019 spring semester. I started out better than I had been, anxiety in my voice lessons lower than it ever had been at my current school. And then it became it very difficult. I couldn’t get a sound out as easily. And it got harder and harder. This became a major problem as my professor was not at all helpful or understanding. Not only was I kicked out of my program, I was convinced that nothing was physically wrong. I thought it was my anxiety or just my worthlessness, or how far behind I was because of my anxiety. All I knew was that I was a slacker and dumb for even thinking it could be something I couldn't fix, for thinking it wasn’t my fault. How dare I?

….

Summer. I was looking for a job. I wanted to hike. I wanted to go to the beach. But I never felt well enough. I was always in pain. I got tired extremely easily. My mom kept saying I looked pregnant. I was running an errand, luckily with my mom when I got extreme abdominal pain. I tried using the bathroom. Nothing happened. I tried food and tea. I could barely walk. I couldn’t breathe. I sipped some tea, got in the car, and went to sleep. It happened again the next day and I went to urgent care. They said there is nothing wrong except a possible lipoma which shouldn’t matter. They sent me to get an ultrasound to confirm the lipoma. The lipoma was confirmed and I was sent to my primary. He said the stomach pain and the lipoma were not related and referred me to a surgeon AND a GI.

I ended up in the emergency room from extreme pain a few days later. I was shaking and could barely think. They gave me medicine and did a CT scan. They said everything was "normal" except for the lipoma and that my lymph nodes were swollen. The next day I was finally able to get a GI appointment. She knew very quickly that it was Celiac and orders the blood test and endoscopy. It was confirmed but there was still the matter of the surgery. It was supposed to be simple, zero recovery. It looked and felt different than expected. The doctor had to go deeper and get it tested for cancer. Needless to say, this was painful and terrifying. But it was all clean, and I was feeling better. What does it have to do with Celiac? Lipomas and cancers are common in those with Celiac. As are other autoimmune conditions, anemia, and a myriad of other conditions. If I had ignored it or waited as other doctors suggested, it easily could have been cancer, my biggest fear.

Now I’m suffering from nerve pain and weakness. They tested my vitamin levels and they are normal. Unfortunately, I most likely have a second autoimmune disease. I’ve seen a neurologist, had an MRI and nerve test, and have been told to go to a university hospital.

Autoimmune disease is no joke. And it might be triggered by stress. I believe it was in my case.

Sources:

https://celiac.org/about-celiac-disease/what-is-celiac-disease/

https://www.health.harvard.edu/blog/autoimmune-disease-and-stress-is-there-a-link-2018071114230

https://www.teepublic.com/sticker/4973911-eat-it-celiac-disease