My Story

Lots of people have a story with Celiac's. More than people know. Many have become intolerant of the whole gluten free connection, but this is what it does to someone who suffers with Celiac's Disease.

My story begins while I was in nursing school. I wasn't focusing on what was happening to my body as much as I was trying to survive the day. I heard one of the girls behind me talking about how her doctor had been proactive and put her on a gluten free diet for her spiraling thyroid tests. Something clicked, and I googled Celiac's. To my surprise, I had nearly every symptom.

For the first couple of years, I tried to be gluten free. I didn't do a very good job of it, and while getting some allergy testing at an allergist, I discovered that I had a very high reaction to gluten. I was told that there was a very good chance that I had Celiac's Disease, but even then I didn't take it as serious as I should have.

I became pretty strict about my gluten, but I didn't read the labels for hidden glutens. Eventually, I went to a GI doctor for a colonoscopy. Because of my blood work results for gluten, she also did an upper GI. Of course, my biopsy came back that I had Celiac's Disease. Now I began to get very serious about this disease, but it still took a dietitian to show me how to watch for hidden glutens. And I still scored over 100 for reaction.

My doctor has me coming back for another blood test in January of 2016. We'll see if my numbers have come down. My sister finally got her blood test done, and she scored around 50. Her GI doctor told her that is still very high, and she is being scheduled for an upper GI so that her doctor can get her biopsy done. We've been told to talk to our kids about being tested and having our grand-kids tested too.

In the meantime, I'm barely tapping into just how destructive this autoimmune disease really is. I've had widespread pain that has been getting worse for years. My mother has Parkinson's and has become completely incapacitated and is living in a nursing home. She had wide spread pain from the time she was 30 and it was something me and my cousins lived with to hear about our parents pain. My aunt was diagnosed with some kind of serious bowel disorder that I now realize was likely serious Celiac's, but back then they didn't apparently have these tests, or didn't know enough about this disease. My mother is to be tested now.

How sad that generations have suffered with this chronic destructive disease. As I learn more, I will share with all of you. I hope that what we've gone through will help encourage others to stop the suffering and get tested.