I haven't been formally diagnosed yet (endoscopy is May 14) and neither has my 6 yr old daughter. However, my doctor indicates my tests results are fairly conclusive. My daughter tested positive just last week after I forced a switch in pediatricians in order to get her tested.
Her father (ex-husband) keeps telling me her TTG IgA test that came back positive has a "VERY" high rate of false positives and that it's likely that she isn't sick at all. However, everything I'm reading states that it's 95-96% accurate. The Dr. yesterday told me that false negatives happen way more frequently. The dad is telling me that he will REFUSE to change her diet without a biopsy, and even then those have a high rate of false positives as well. That leads me to believe that even when/if she is formally diagnosed that he won't change her diet until she starts having major major health problems.
I have no idea where he could be getting his information from! And when I ask him for websites and links he just ignores me. Does anyone have ideas on website that provide reports that show testing is inconclusive or there are high rates of false positives? I want to understand where he is coming from, but his history makes me think he is just saying whatever he wants to say regardless of actual facts.