My initial blood test for celiac came back negative. I'm not really surprised. I've had symptoms since I was in high school and been tested previously and they've come back negative (even biopsies). I'm waiting to hear back from my primary care physician to see what she wants me to do next--different blood test, biopsy, or simply go gluten-free. (I understand that some of the tests are not accurate when a person has a weak immune system, which I have. I'm not sure if my doctor took that into consideration when she ordered the test.)
I so wanted a definitive diagnosis. I know if I go gluten-free and feel better, that is pretty good proof. But I also know that if I go gluten-free and feel better, I will never have an official diagnosis because you have to eat gluten for any test to "work".
I mentioned to a friend that I was certain I have celiac and would be going gluten-free once the testing was complete (no matter the outcome). Her response was exactly why I want a diagnosis. She told me "It's bad to go gluten-free if you don't have a diagnosis." I don't know the truth of that statement, but it is exactly what I will face for the rest of my life--from friends, family, colleagues, insurance companies. If you don't have a diagnosis, it must be in your head. And in the my head, I will wonder, even if the pain I've lived with for years finally goes away.
I know I shouldn't let other people's thoughts bother me, but I know it will cause headaches if I don't have a real diagnosis. I just want something to be easy for once (not that having to go gluten-free would be easy, but it'd be easier with a diagnosis). What's even more frustrating is that I've been living with pain for so long that people don't believe me any more. Like because I learned that I couldn't just lay in bed all of the time (like I did when I was first trying to get diagnosed), it must not be real. Yet, I have had problems for years that I've pushed aside and now that I want to put my health front and center, I have people believing I'm loony.
I stopped hoping for a diagnosis and "cure" to my pain many, many years ago. But, for some reason, I let myself hope I'd have an answer this time. I am ready to do what's necessary. But now, I don't know what it means.