<<Disclaimer: Verify this information before applying it to your situation.>>
 
Malcolm Watts <[log in to unmask]> wrote:
 
M> I was diagnosed about 6 months ago on the basis of IgA and IgG blood
M> tests-  anti-endomysial (sp ?) antibodies weren't tested....Blood
M> tests were "ambivalent".  If you interpret the tests per the
M> accompanying notes, tests show "negative", however the Pathologist
M> wrote "Positive" on the results form.
 
First, bear in mind that I am not a medical professional, I am simply
expressing my opinion and understanding of the situation from a layman's
perspective.
 
My understanding is that the antiendomysial test is the most accurate
of the tests.  Is it not available in Australia, or was your doctor/lab
unaware of the test?
 
M> ...at the time the doctor was looking for changes characteristic
M> of a different disease, and not specifically for coeliac....Gut
M> abnormality WAS present....I spent 3-4 months on a G.F. diet....I
M> gained zero relief from the tiredness and "brain fog" and memory
M> loss, but some noticeable relief from some gut symptoms....At the
M> end of 4 mths, my (gastroenterologist) physician took me off the
M> diet, and there's been no substantial change, except for a mild
M> return of some gut symptoms.  His diagnosis was : NOT coeliac,
M> because "I've never seen a genuine coeliac case where change was
M> not swift and dramatic when on a strict diet".
 
In my opinion, you doctor's first mistake was not going back in for a
biopsy when when he first detected the gut abnormality while looking for
something else.  If he had specifically done a biopsy looking for
celiac disease before you started your diet, and found the
characteristic villi damage, increased lymphocytes, etc. you would have
had a firm diagnosis.  Now you simply don't know.
 
Judging from the responses on this list and in my local support group,
I'd say the recovery time varies dramatically from one person to the
next.  Kids seem to bounce back the fastest.  It would appear that some
people require several years to get fully recovered.  This could be
because there are many years of damage to undo, or to unfamiliarity with
the diet and unknown gluten contimination the first few years.  What-
ever the reason, I know of several people who did not recover quickly
and dramatically.
 
Bette Hagman, the author of _The Gluten-Free Gourment_ and _More from
the Gluten-Free Gourmet_ gave a talk this weekend at a celiac seminar
in Columbus, Ohio.  If my memory is correct, I believe she said it took
her seven YEARS before she was fully recovered.  She believes she had
the disease all her life, and that this affected her recovery time.  The
good news is that eventually she did get better, and she is obviously
leading a happy and productive life in spite of the long recovery time.
So I would question your doctor's assumption that if it was celiac
disease your recovery would have been "swift and dramatic".
 
To address some of your questions:
 
M> 2) Then, once back on gluten, how long before return of symptoms ?
 
This varies quite a bit from one individual to another.  One man in our
group began eating gluten again and when it didn't affect him he decided
he was "cured".  It took about three years before he began to realize
that he was right back where he was when he was first diagnosed.  He now
believes his three years of cheating caused some nerve problems in his
feet and legs as well as the return of his gut-related symptoms.
 
M> 3) Next, should an anti-endomysial test be performed ?
 
After being on a gluten-free diet for several months, I believe you
can't be sure the blood tests or a biopsy would show anything.  Only
after being on a gluten-containing diet for a long time can these tests
be useful in determining whether or not you have celiac disease.  How
long?  I don't know, but it would require at least several months.
 
M> 7) I'm interpreting the mild return of gut symptoms after cessation
M> of diet as possibly not specifically related to gluten...
 
You may be right.  It could be something else; for example a wheat
allergy.  But it also could be celiac disease.
 
M> I don't like to question my doctor, but this is important...
 
Why not question your doctor?  Doctors can be wrong, make bad
assumptions, etc.  The good ones are willing to admit this and learn
from their patients occasionally (in my opinion).
 
Please remember that all of this comes from a celiac parent, not a
medical professional.  I hope it gives you more to talk over with your
doctor, but please don't treat what I've said as medical advice or
expert opinion.
 
--
-- Jim Lyles
-- [log in to unmask]
-- Holly, Michigan, USA
--