There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you.
Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy.
Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.