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Thank you for all those  who responded to my post in which I said - 


"I think it's still fair to say that the diagnostic tests for CD should
be regarded with some wariness. False negatives are common. My situation
here in the UK was very similar to yours. Fortunately my doctor was one
who was well up on CD. He diagnosed the spots and the rashes I was
getting as dermatitis herpetiformis - the form of CD I get - before any
tests and put me on a GF diet. Within two or three months my skin had
totally cleared up. Only then did we have a blood test done - it came
back negative. He shrugged and said, 'With a normal diet you get the
spots and the rash; on a GF diet it all goes away. You have CD despite
the tests.'" 

Quite a few seemed not quite to get entirely what I was saying, not
being sure if I were in the US or the UK, or at which point my blood
test was done. One or two seemed to think I was asking if others felt I
was coeliac or not - which I'm not - I am. If you see what I mean.  

Anyway, be that as it may, the overall response split into two main
factions - those who believed my blood test was bound to return a
negative because it hadn't been conducted to the proper specifications
and those who believed - from personal experience - that blood test were
not the infallible tool they're often thought to be. One said she
thought there was at least a 25% margin of error and another that that
error was nearer 55%. If either of those figures are correct then my own
personal opinion, for what it's worth is, that blood tests like that are
not much more than pointless.  

(One respondent was anxious to point out I should regularly take
probiotics to increase nutritional absorption. I do this anyway and I
guess it's good advice for anybody with - or without - this condition.)

As to the first group - I have to say that this was at least ten years
ago (I've been on this list that long) which was early days as far as
Western awareness of this condition goes and perhaps tests then in the
UK (which today at least is believed to be a bit in advance of the US in
awareness and treatment of CD) were not as advanced and did not have the
same specification as today's. Either way, the point I was making was
that in the end the only infallible test seems to be the most obvious -
if you eat a GF diet and the symptoms of CD go away, and if you leave it
off they return - then you've got CD. 

Summing up my own very personal view - by all means have a blood test if
you feel you need one. But don't count on it. There are other and more
reliable ways. 

Jeff in London UK

 
-- 
jeff grant

London UK
Les Rorgues France

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