I have been off the Celiac forum for several weeks. I am pretty frustrated. I have no antiendomysial antibodies, no transglutaminase antibodies, and my small bowel biopsy was negative. Hence, no celiac disease. The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.
I am now in a wheelchair. I thought things had plateaued, but found out yesterday from the neurologist that I'm getting worse. I've been to Hopkins and Mayo, and have found out that basically, the neurologists there pompous ( s) insert whatever expletive you choose.
Every article I have read about gluten ataxia gives a really grim prognosis for my symptoms improving. Each says that the goal is to stop the progression, but none that I've read mention return to prior function.
Does anyone know ANYTHING that can help me with this?? My neurologists have suggested (months ago) that I apply for Social Security disability, but I have refused, continuing to believe that I'm going to get better. Am I fooling myself?
Any help you can give me would be greatly appreciated