Day Seven:

IGG. IGA. TTG. DQR8. DQR6. Endoscopy. Colonoscopy. Genetic testing. False positive. False negative.  Huh? I'm a week in and I feel like I've gotten no where. The Rheumatologist has given me so much (too much) information, and I can't seem to find my way. I have choices now. I hate choices. I don't want choices. I'm back to being that tantruming toddler I was a week ago... I need to be told what to do. Doesn't anyone get that? My doctor called me complex and scientific. Ha! The bottom line is this.... I want the answer... the one that is 100% accurate. And guess what she said? In my case, it might not happen.

So here's what I do know.... my blood tests for Celiac were positive, as well as a test showing a Vitamin D deficiency (which, funny enough, goes along with Celiac- hellloooo!!!). In my doctor's eyes, it is most likely that I have Celiac. Everything else was normal (phew). However, in order to confirm that I have Celiac I need to have one of two things done: a genetic test for the Celiac marker or an endoscopy/colonoscopy (the top half of which I've already had a year ago).  Turns out that choice number one is often not covered by insurance, and if it comes back negative, it means I can't have Celiac but still might have varying degrees of gluten sensitivity/intolerance since my initial Celiac test was positive. Choice number two involves ANOTHER biopsy, which was very expensive and leaves room for question since my doctor said I might get a false negative.  Which then begs the question... was it negative last time because I didn't have the disease (yet)? Or was it negative because I was biopsied in an unaffected area of my small intestine? And why am I, one week into this, the one who has to make the decision about where to go from here?

So where DO I go from here? Well, my plan is fluid at this point, but I've come up with this so far, by taking my Rheumatologist's advice and going by all of the research I've done.  1. Wait for insurance approval/denial of genetic testing. I've decided to try this route first because it's the least invasive and seemingly most conclusive test I can get. If it comes out positive, it's pretty clear that the answer is Celiac. I think. I guess we'll have to cross that bridge when we come to it. If the insurance company denies it, I will head back to the G.I. doctor and see what they recommend next, even though I know what it will be.  2. Stay on the diet. It might make me feel better, and if it does (or even if it doesn't), the doctor can run my blood test again in a few weeks and see how my blood levels have reacted to the elimination of gluten.  Well, I'm already on the diet, so what now? More waiting? Ugh. And more questions. 

In the beginning I wasn't clear why it took so long for people to get diagnosed. Now I get it.  Even when things seem so clear cut, they really aren't. All that's left is more waiting... and the diet.... the lovely, delicious diet. And hope... that someone or something can give me the answer.