Yes, No, Yes - Sort of.....

I took a little hiatus, sorry about that. I was waiting for results, waiting for explanations, waiting for results, waiting some more....

My endoscopy went fine. Pretty quick and easy, the only glitch was the ineptness of the person starting my IV. Let's just move on. I had to be there at 8 and I was home by 11ish (that includes the hour drive home). Then I waited on my results.

As an employee of the facility where the testing is done, I have access to results. It's not something I recommend and I hadn't planned on looking them up because I wanted to give the physician time to look at them (although he had told me ahead of time it was fine to look them up myself). We also have a way of signing up to access your results and send email messages, etc. to your physician. After 2 weeks of hearing nothing (and I knew my results within a couple days), despite 2 messages and multiple phone calls, I finally tracked down my doctor through our email system. Luckily, he didn't mind me doing this and was very apologetic that he had not received my messages via our web-based system.

So before the endoscopy, my lab levels (specifically: ttg-iga) was elevated to 32 (anything over 10 is positive). Coupled with my symptoms and my response to a gluten-free diet, the doctor put me at almost definitely having Celiac. The endoscopy, however, was completely negative. Um...yeah. So. There are very few things that can raise a person's ttg level and none of them matched with me...it's pretty specific to Celiac. I had only been on a gluten-free diet for a couple days before going back on a regular diet - not enough time for any damage to heal. Plus, some of my labs came back really low - particularly my Vitamin D level. Another indicator.

So, we repeated my ttg level and also did genetic testing. My ttg level is down to 21, still positive but the change is indicative of the gluten-free diet I'm on. As far as symptoms, I can definitely tell a huge difference when I do eat gluten. My body definitely does NOT like it!

Took over a week to get the genetic test results back. They look at two specific ones hla-dq2 and hla-dq8. In simple terms, if you don't have these, you cannot develop Celiac. If you do have them, then you have the predisposition to develop it and should be monitored. So my doctor basically said that, if it came back positive, then we'd make a positive diagnosis. The results are graded from 1-8 depending on whether you have one or the other or both, etc. Mine came back at a 4....according to the chart that came with the results, I have a 10 times greater chance of developing Celiac. So we're back to a yes.

I'm now awaiting the next steps. I will need to see a nutritionist - I have a good handle on eliminating gluten but I still need help evaluating my diet and making sure I get what I need since I'm eliminating a lot of foods from my diet. I am taking an enormous dose of Vitamin D weekly for 10 weeks and then will probably take it monthly (and it makes me so sick!) depending on what my levels are at the end of that time. Because of my nearly-nonexistent Vitamin D level, I will have to have a bone scan for osteoporosis as well. Sigh.

Two good things:
#1 No one is telling me "it's all in your head" anymore.
#2 The gluten-free diet has completely resolved my skin lesions that I've been dealing with for over 2 years. (What a HUGE relief)

So that's the medical update. Finally some answers....just had to go all around Robin Hood's barn to get there!