Even though some of you know this because I say this on my “About” page, but many of you still may not. I don’t have celiac disease. But I write, research and speak passionately on the subject because my daughter, brother and dad all have it.
Celiac runs in the genes. So with all this history, it dumbfounds me why I don’t have it. Or do I? I have a rich history of other autoimmune disorders in my family as well. But so far, I have not been diagnosed with anything. I should be thankful…
It might sound creepy, anxious or something else when I say, I think about this often. I worry that if I have undiagnosed celiac disease, I could end up with several related ailments like osteoporosis or rheumatoid arthritis in 10-20 years.
I don’t have GI symptoms. But I do have a few of the other 300 or so symptoms that could be related. I have always tested negative for the celiac blood test — but we know while the test is good, it not 100% accurate, which is why the biopsy and endoscopy of the small intestine is considered the gold standard in diagnosis. The scope is something I have never had.
So what are the next steps for celiac disease tests?
This week I met with a physician’s assistant with a local gastroenterology clinic in Minnesota. I had my personal medical history ready to go, as well as my family’s medical history. I explained my concerns about my family history and that I want to be sure my previous celiac disease tests (serology) is correct.
After listening, the PA told me because of the strong family history and some of my own concerns about symptoms, she would get me in for a biopsy and endoscopy. What? I was shocked! I thought for sure it would take more convincing! After my office visit, I had the celiac panel done and blood work to check on my vitamin and mineral levels. That was a single blood draw into three different vials.
The biopsy is scheduled for Thursday, September 18th. (Click here to read more on my experience with the biopsy). If you are going through the same thing, or might be going through this, feel free to follow along here as I document my experience.
I am nervous about the endoscopy. The idea of having a tube sent down my throat and not being totally “knocked out” freaks me out a bit. When my daughter had it she was 15 months old and they did full sedation in the hospital. So why go through all of this and why not just go gluten free? I need to know if I have an autoimmune disease. Because if I do, it changes everything if I want to stay healthy for the rest of my days.
If you have already been through this, feel free to leave any tips in the comment area below.