Now that my brain is not completely in a fog (not completely anyway) I am able to do a little more research.
I left my appointment yesterday really disappointed. A little too out of it to show it but disappointment really rocked me.
To go through everything I went through and to finally have a diagnosis and then…not. *of course this is all going on the preliminary diagnosis she gave me yesterday…we don’t have pathology yet*
I didn’t even have the energy to cry.
I was just done with the whole scene.
Then I came home from work and started researching for reals.
Well…after I took drugs and slept some more. This freaking migraine from hell is killing me.
I think I’ve had a migraine for like…7 days straight. Pretty over that.
Sorry to digress.
Here is what I found in my extensive reading today.
I should have been eating gluten for 4-8 weeks before the test, not two weeks which is what the PA told me.
” It isnecessary for you to be eating glutenevery day for at least 4-8 weeks beforethe procedure. If you are scheduled fora biopsy and are not eating gluten, talkto your doctor about what is necessaryto obtain accurate results. If you havea biopsy and have eaten gluten only ashort time before the test, you and yourphysician will not know if a negative testresult is accurate or due to your diet.”~source
It’s also possible to have positive blood tests but a negative biopsy. This is known as “latent celiac disease.” If this is the case, your physician should recommend regular repeat endoscopies, since most people with latent celiac disease ultimately develop full-blown intestinal damage. You also can discuss the possibility of following a gluten-free diet as a trial, to see if any symptoms clear up.~source
I love how that last source suggests “regular repeat endoscopies“. I’d rather visit a fabulous retreat in Mexico for what those regular repeat endoscopies would cost. It would serve me far better than that little adventure did. Sheesh.
So I’ll leave it at that and say I’m on day one of being gluten free again. I am hoping tomorrow my migraine disappears. I’m going to treat myself as Celiac until my body says otherwise. If I’m not better than I’m not better and there’s no point to it.
I do see there is one last test I could do. I could get genetic testing. Anyone care about that?
Maybe next week I’ll care. I’ll let you know.
I need to go to bed. I have running in the morning!