First time poster here, not really sure where to start. I guess I'm looking for some support and to feel like I actually belong in the gluten-free community. I don't have any gluten-free friends, my family isn't terribly understanding (They think its a fad diet) but I do have a very supportive significant other. I've been reading these forums ever since going gluten-free in August of 2009.
I think I mostly feel like I don't belong because I haven't had a positive diagnosis. Here's a bit of my story:
I've always been extremely thin. I didn't reach 100lbs until I was 19 or so. In 2007 I began having severe joint pain in my knees, I had to start wearing knee braces and nothing helped. In early 2008 I began having pain in my lower left flank, it was a dull ache that was there consistently and was doing nothing but getting worse. I went to dozens of doctors and many of them felt it was reproductive related, even scheduling me for surgery to remove "growths" that may be there (no positive test result for that either). Right before that surgery I went to an amazing doctor in Boston who felt my pain was coming from my colon. Nearly 18 months after all of this I went, scared and distraught to my primary care physician. She sent me for a CT scan and dozens of blood tests, including ABS Celiac, everything came back negative, she told me to take some fiber and that she could do nothing more for me (Nice, eh?). A few months later I was talking with a friend who advised of their gluten problems and challenged me to just try it. Well, I did and I haven't eaten a bit of gluten (Intentionally) since then.
I can't explain how amazing I feel. Problems I didn't know were problems are gone, Migraines I've had since I was 5 are gone, my joint pain? Gone completely. I have more energy than I've had in years. My mind is clear, my depression? Gone. I've also put on about 15 lbs (Although I don't really like that so much ). But my problem is still that I feel like no one believes me because I don't have a piece of paper. My body speaks for itself, and I truly believe that, without a doubt, I have Celiac's disease, but is anyone else out there feeling like I am?
I also seem to be finding myself with quite a bit of animosity towards those that can eat gluten. My life is changed completely, and social situations are so difficult. I have so much anxiety around those that are eating gluten. I've found that I seem to be extremely sensitive to gluten. I've had a salad brought to me with a piece of bread on it, the waiter took the salad back, removed the bread and I still got ill from it. (even after asking them to remake it).
Sorry this is long and rambly. I guess I'm just hoping I'm not alone out there, or crazy.