<<Disclaimer: Verify this information before applying it to your situation.>>

I have read a book called "Coeliac Disease", written by W T Cooke and G K T
Holmes, published in 1984.  They discuss jejunal muscosal changes in patients
with celiac disease who were in remission on a gluten free diet, when a
normal diet is resumed.  And I quote "Indeed, it has been claimed that if
changes have not occurred in three months, [flattened villi occurring] the
diagnosis is incorrect.  There is evidence, however, that this view is wrong
and that the time for a flat muscosa to develop may take months or even
years."  [on a gluten diet]

They also state the time needed varies by individual.  Please keep in mind
the intestines can heal quickly in some individuals.  I have read that
anywhere from 6 months - 2 years on a gluten free diet could completely heal
the villi based on the age of the patient and the degree of damage at the
time of onset.  This means that a gluten diet can be commenced without no
apparent symptoms for some individuals until the damage begins again.  This
could take months or years.  Meanwhile, the risk of intestinal lymphoma
exists for those that are celiac.  My mother and two of her sisters died of
intestinal lymphoma, so I take the cancer risk quite seriously.

Eating gluten would be like playing with fire for me.  I will never go back
to eating gluten again even if the HMO doesn't change their mind on the
diagnosis.  (It is currently a gluten sensitivity, but not celiac based on
tests that were improperly performed--which is why the diagnosis is under
appeal.)  There is no proof that it will not eventually completely flatten
the villi after many years eating gluten.  My villi were all clumped together
in my biopsy.  But no one told me this until I viewed the biopsy for myself.

I want people to be aware also, that some doctors are looking only for flat
villi, not an increase in lymphocytes.  We all need to be actively involved
in our diagnosis process.  I would encourage anyone with a negative biopsy
after being gluten free to verify with the pathologist what he or she was
looking for when he or she read the biopsy.  View the biopsy yourself and
compare it to pictures in books.  The book I mentioned above have some
excellent photographs of biopsies which you can compare them with.  Ask the
pathologist whether he/she was aware that this test was on a challenge of [so
many weeks or months]and not on someone who had been eating gluten for years?
Also tell them how long you were gluten free.  Ask them at this point if they
have to experience and skill to read this type of biopsy.  My pathologist
admitted he did not, which is why he recommened the appeal.  This kind of
information needs to be provided to the pathologist to insure that they were
aware of all the circumstances of the case.  My gasenterologist assured me
that the pathologist would be informed of my case, I found out that this was
not true at all.  So we need to find out everything for ourselves, rather
than trust the system.

I am still waiting on my appeal of diagnosis with my HMO.  If anyone would
like to read about my experience, my home page is listed below.

Abigail
---
[log in to unmask]
Homepage: http://www.geocities.com/HotSprings/Spa/4003/
Join the Monday night Celiac chats from 8PM - 10PM ET
and the celiac forum at: http://www.medsupport.org