Yes I'm back. My story is getting ridiculous.
Okay, I had a ttg blood test done in February and my result was 7.9 with a reference of < 4
So my doctor performed a biopsy on March 13 and the pathology report reads: "Benign duodenal tissue with preserved villois architecture. Patchy mild nonspecific increase in intraepithelial lymphocyte. Correlation with more appropriate laboratory testing would be helpful to excude early celiac disease" (However, on the phone on March 15 I was not told about the increase in intraepithelial lymphocytes- I was told my biopsy was completely normal. I only got this pathology report on May 1st).
So, my doctor concluded this as negative. However, I went gluten free anyway and it really was making me feel better. April 5th I went back and still wasn't feeling fully better. So, he orderd the Prometheus labs for crohns and then ordered the celiac panel again (I thought this was weird since I told him I had been gluten free since March 15th, but just went with it)
On April 17th, the nurse called me and specifically said "YOUR PROMETHEUS LABS WERE NORMAL, NO CELIAC AND NO CROHNS" I also asked her about my TTG and if it had gone down, and she said YES. I still stayed off of gluten despite this information.
I had another appointment on May 1st and decided to ask for copies of everything. She gave them to me, and while I waited for the doctor I opened them to look. Shockingly, my Celiac panel was positive in many areas, including the TTG which I had asked the nurse specifically about and was told that it was negative now.
Here are my results as they read directly from my lab sheet:
DGP IgG: Value of 14.0 with a reference range of < 4.9
DGP IgA: Value of 1.5 with a reference range of < 6.1
TTG IgA: Value of 12 with a reference range of < 10.3
EMA IgA: Value of POSITIVE with a reference range of NEGATIVE
(My total serum IgA was also in correct range, by the way)
SOOO I was utterly confused. Why would I be told that my panel was negative when it clearly is not?
My doctor completely denied that the nurse told me the results were negative. He said "No, you were told they were positive". I was just so angry at this point.
Anyway, he still would not diagnose me. He says he needs to see villi flattening in order to diagnose me. (Whats funny is that he told the the TTG is the most specific test for celiac, so he clearly is not educated about this disease).
As far as I am concerned, I have celiac. I am finally starting to feel like my old self again after being gluten free since March 15th.
What do you guys think?
Should I get a second opinion so that I can have a written diagnosis? (Because I have zero intentions to ever go back to my old gastro doctor)
Thanks to all of you who have helped me in previous posts. There is so much support here. Any help now would be greatly appreciated!