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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