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Hello folks;
                I'm a first-time poster to this list, recently
tentatively diagnosed as coeliac, and I have a couple of questions
about the speed of relief from symptoms, and followup testing.
 
        I was diagnosed about 6 months ago on the basis of IgA and
IgG blood tests- anti-endomysial (sp ?) antibodies weren't tested.
A biopsy revealed intestinal ulceration (quite noticeable, I've
seen the video :-) but at the time the doctor was looking for changes
characteristic of a different disease, and not specifically for
coeliac, so the biopsy wasn't as extensive as it might have otherwise
been, and few (if any) gut changes characteristic solely of coeliac were
noted.  Gut abnormality WAS present, though.
        Blood tests were "ambivalent".  If you interpret the tests per
the accompanying notes, tests show "negative", however the Pathologist
wrote "Positive" on the results form.  (Tests were sufficiently
abnormal to warrant assumption of weak positive, I suppose).
        I spent 3-4 months on a G.F. diet, learning as I went more
on how to avoid gluten in additives and such (as we all do).  In that
time, I *know* I was exposed to gluten at least twice.  (Both times
I was incorrectly advised by either manufacturers or staff at eating
establishments).  It is possible (though unlikely) that other
significant gluten exposures occurred in this time.
 
        Over the 4 months I gained zero relief from the tiredness and
"brain fog" and memory loss, but some noticeable relief from some gut
symptoms (pain when I need food instead of hunger, occasional cramping,
flatulence).
 
        At the end of 4 mths, my (gastroenterologist) physician took me
off the diet, and there's been no substantial change, except for a mild
return of some gut symptoms. His diagnosis was : NOT coeliac, because
"I've never seen a genuine coeliac case where change was not swift and
dramatic when on a strict diet".
 
1) My question is thus; How long should a diet be necessary before
noticeable symptomatic relief occurs ?  My 4 months was very strict.
 
2) Then, once back on gluten, how long before return of symptoms ?
 
3) Next, should an anti-endomysial test be performed ?  What is the
accuracy/specificity of IgA/IgG tests alone ?  What does "weak
positive" mean ?
 
4) Could the gluten exposures have messed up the recovery period ?
How much damage is done by gluten exposure in cases like this ?
 
5) Unfortunately, I didn't insist on blood tests whilst still on the diet,
but have the opportunity to be retested now ?  What should be
performed ?
 
6) Has anyone else had an experience like this ?  If I have CD, I want to
know, and to treat it.  If not, I don't want the hassle of a G.F. diet.
 
7) I'm interpreting the mild return of gut symptoms after cessation of
diet as possibly not specifically related to gluten, but to some other
factor excluded by the strict G.F. diet.  A diet that strict MUST have
other physiological effects when foods are taken in and out.  Is this
reasonable ?  Experiences ?
 
What really annoys me is the ambiguity of test results.  Do I have CD, or
do I not ?  I'd appreciate any comments. I don't like to question my
doctor, but this is important...
 
Thanks,
Mal
 
--
Malcolm Watts           3DIS Pty Ltd            Phone +61 3 9813 3636
Systems Engineer        650 Burwood Road,       Fax   +61 3 9813 3733
                        Hawthorn, Victoria,
                        Australia, 3122