Before I forget --- the doc actually said to me that the testing for celiac was so inaccurate & there is a too large % of false negatives in the celiac panel as well as a worse % for the dh biopsy. And then he went on to talk about how the endoscopy misses so many celiacs also. It was like he had been reading this board & saying all the things we say! I was stunned to say the least.
Yes, IH, it is incredibly validating to be told what we already know.
But I'll tell you guys --- it's so weird --- I suppose I should be "over the moon" but the truth is that I was perfectly content & quite comfortable with being self dx'd. I'm sort of a rebel if you will and I did not go with the intent of getting a dx. I only brought all those records & such to get him to take me seriously enough to agree to run the tests I knew I needed & so many have had problems getting their doc to run. I did not have a single doubt in my mind that I was celiac with dh. And I could live with that forever. And woe be unto the person who doubted me. I would tell ppl I had an official dx with no problem if they should be "that kind". And seriously, even if you end up in the hospital ---- when have you ever had to prove you had a dx of this or that or the other disease in your entire life? They don't ask you for documentation of your dx. Do they ask you for proof you are diabetic? No. You say it, you ARE it.
Just like life isn't it? When you don't give a darn about having an official dx, one drops right in your lap. Yet some search & search & search to get an official dx & can't get one no matter what. Life's weird that way.