Hi, Everyone who so kindly responded... I'm so sorry I haven't replied in so long - I think I just kinda zoned out. Sometimes I just get SO tired of fighting all these illnesses, treatments, researching, different meds, etc., and I just burn out and want to "hide out" a while...
For an update... After this negative test, I did have a saliva test for iGa and it was VERY low - so would that possibly mean that my immune system simply does not MAKE the antibodies to the gluten protein, therefore being a false negative? Seems I read that somewhere on these forums but I can't seem to find it now.
We did do the genetic testing, and I did test positive for 1 of the 2 genetic markers. I also had VERY high C-Reaction Protein - 27.3 - and she said that is showing I have some major inflammation going on somewhere.
After that first 4-day trial off gluten did so well, I did go gluten-free again back in Dec. and made it for 9 days that time. Had the same results - 9 lbs. came off instantly during that time (after being STUCK at 330 "forever") - plus the other symptoms improved. In Jan. we went on a cruise and I did NOT stay gluten-free. I wish to goodness I HAD. When we got back I did immediately go back to gluten-free, but for some weird reason THIS time I did NOT have any positive results. Symptoms stayed the same, weight stayed the same (I'd regained 6 of the 9 I'd lost on the cruise) - and I got VERY discouraged to be giving up all my favorite foods with NO results whatsoever and just got fed up with the whole thing.
Over the next month or so I developed MAJOR joint pain in my fingers and now have a very painful tendonitis that is stopping me from even being able to make a fist - and it's weird because it hit BOTH hands at the exact same time. Plus, the leg/ankle swelling will NOT go away no matter how many diuretics I take (is this gluten-related??).
So needless to say, I'm now back on board and taking it way more seriously this time around. I just really wish (and hope) that I will see at least SOME of those positive results I got the first 2 times - that would really help encourage me to continue. What would cause this reaction - to do so well those first 2 times and then "nothing" - ?? How long does it usually take to see some positive results after going gluten-free? Seems many say just a few days and they feel better than in years! I WANT that!!
Thanks so much for being there and for all the support... Oh - my ND DOES work under a regular physician and can definitely order any testing we want to do. I'm just not sure at this point whether it's necessary to go through the biopsy since it seems being gluten-free is necessary for me. Or would the biopsy show anything else we might need to know?