<<Disclaimer: Verify this information before applying it to your situation.>> Hi again all! First, I hope to post a summary of hot cross buns when things calm down here. I need some input, mainly about blood test accuracy & diagnosing CD in children. I'm in England, so I'd especially like any info from the UK but all comments & experience appreciated (& I'll summarise if that's OK). To put you in the picture: Our son is 3-1/2 yrs old. Last year he was referred to a paediatrician because he was not growing well (below the bottom line of the growth charts used here). She immediately suspected celiac disease because of the circumstantial evidence - 1) His mum (me!) is an insulin-dependent diabetic 2) He had foul-smelling diarrhoea type nappies/diapers 3) He had a slight pot-belly ..... he cld also be described as very irritable - but that might be because of his age - and very pale (which might just be his natural skin colour). They did blood tests - which were negative. This threw things into total confusion because the doctor's attitude shifted from "he has a problem" to "the tests are negative, he *may* have a problem but it's not urgent cos it's not what we thought". So far as I know the celiac blood test was the IgA test. The doctors keep telling us that it's "over 90% accurate" - but when I asked our family doctor what that really meant he didn't know, nobody had asked him before! I asked the paediatrician about this 90% accuracy - even if it is over 90% accurate, surely that means it's up to 10% inaccurate? She just said that they're very happy with it. From what I've read (in the FAQ & DIAG-TST doc) it seems there are 3 different blood tests - can anybody tell me why the hospital wld only do one rather than the full set (other than cost?)? Have I got the wrong end of the stick, or is there only one blood test done over here in the UK? Is it easy to misinterpret the results? The other apparent reason for complacency is that my son is *very* active - the paediatrician said his "level of activity is impressive" & the implication is that any child with celiac disease is not going to be running round most of the time. So I'd be very interested to hear from people who've found that gluten makes them "hyper". Thomas is currently on a milk-free diet to see if that helps his diarrhoea .... well, it is now less often (it used to be up to 3x/day) & slightly less runny, possibly because he's also on calcium supplements cos he won't eat fruit or vegetables & runs a mile from soya milk. I *think* it may not have quite such a foul smell! Potty training is a joke in our house. The dietitian said that "Milk is obviously not the end of the story." We go back to see the paediatrician next Mon & I'm not happy ATM so any info wld be appreciated. He is growing a little, but not much. ATM I wld describe his tummy as a definite pot belly shape. The other background info is that I had a blood test for celiac disease in 1993 - that was also negative. I was then diagnosed with CFS .... When the Dr talked about Thomas having CD I decided to try the diet - just to discover the problems!! We were pleasantly surprised to find that going gluten-free had a very noticeable good effect on my health (another story cos my doctor doesn't know what to do with me! - I don't know if I have CFS or CD, but I have reasons to believe it may be the latter). So does anybody know of people in the same family with negative blood tests but who then prove to have celiac disease? In other words, is there a family tendency to "false negatives"? If one blood test is negative is the same test still likely to be -ve when repeated (which they may do for Thomas)? Sorry this is long - I wanted it to be clear (& believe it or not this is a *short* version!). The bottom line is that my instinct says *something* is not right with my child & many of the "symptoms" indicate CD but the blood test & his energy contradict that. I don't want him to lose out on growth or develop other problems later on because I haven't argued well enough with the doctors. I hope he does not have CD, but if he does I'd rather that we find out sooner rather than later. TIA for all replies & support Best wishes Sue O <[log in to unmask]> in England