2 Yr Old Has Gene But Blood Test Negative
Posted 01 September 2004 - 01:41 PM
What? The whole reason that she was tested was because she presented as a "textbook case" as the doctor put it, for celiac disease. Unfortunately she was gluten free for 9 months and not on gluten for a significant length of time (a few weeks) before the antibody tests were done (because I thought and the doctor thought that she would get really sick)
Her one test (I think it was the IGA) came back borderline low so that could be why her TTG looked normal. The last time my husband talked to the doctor she said if the genetic test came back positive she would want to do an endoscopy, and now they say she's fine. I am going to get really pushy with the doctor in a minute when I get someone on the phone.
I really want to get a diagnosis for her.
Posted 01 September 2004 - 02:18 PM
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 01 September 2004 - 03:13 PM
I agree, it is is compelling, but I keep insisting on a diagnosis maybe because I get tired of the perception that this is some kind of food neurosis that I am imposing on her, and I know it doesn't matter what people think, but I really want to be able to explain it with conviction and a diagnosis, maybe that can't happen but I can try.
But really, the fact that she responded to the diet is a test itself.
Well as if I didn't find all of this testing to be discouraging enough! I really feel like I have to be such an advocate for my daughter to get answers because it would be easy for doctors to write it off when she comes back normal on the antibody tests.
Posted 01 September 2004 - 03:14 PM
Posted 02 September 2004 - 05:05 AM
Posted 02 September 2004 - 03:49 PM
celiac3270, it's good that your brother knows he has the gene. In my daughters case, she was very symptomatic so I don't yet believe the negative test result.
Does anyone have an estimate on how many people carry the genetic marker for celiac disease and the likelyhood of developing Celiac if you have the gene marker?
I have had someone say to me, it's a genetic disease, if you have the gene you shouldn't consume gluten, I'm not sure if I agree with that, but I'm curious how common it is.
Thanks for the replies
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users