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Hi fellow list members
Firstly many thanks to all who subscribe to this list for the mountains of
information you have shared and will hopefully continue to share regarding
CD and Gluten intolerance generally.  It provides not only information but
support as well.

My daughter was diagnosed as having Coeliac Disease 5 1/2 years ago after
years of suffering all the symptoms you list members and your famillies are
so familiar with.  She was initially taken off all gluten containing foods
as well as sugars/artificial sweeteners/ carbohydrates (hypoglycemic diet)
and had to eat every two hours to maintain energy levels.  This worked
great but as you can imagine was impossible to maintain long term -
especially with school.  The Dr then reintroduced sugars with no problems
and non gluten carbohydrates again with no problems.  Then we slowly
reintroduced wheat etc and all hell broke loose so they disappeared from
the diet again until she recovered.  They were then reintroduced as a
challenge one at a time and she had a reaction to them each individually.

Eventually she was biopsied and the Dr advised us that although the test
result was not absolutely positive - possibly due to her being almost
totally gluten free for 11months except for the gluten challenges and for a
short period just before the test there was enough evidence to indicate
that she did in fact have Coeliac Disease.  She has maintained an absolute
gluten free diet since then - never giving in to temptation and being 100%
vigilant about the content of foods etc..  Initially there was an
improvement but there were always health issues and the symptoms never
fully disappeared (a familiar story for many).

Anyway to cut a long story short she eventually had enough of not being
really well and sort further medical opinions and obtained a copy of her
bipopsy report.  This report in fact staterd and I quote  "the villi are
tall and healthy with no signs of present or past damage.  There is no
evidence of fungi in the bowel etc."  In other words she was never
Coeliac!!!!   How the original Dr arrived at this diagnosis is beyond me.

I would therefore advise anyone who has a borderline or negative result to
ask to see the report which is easy to read, seek further advise and not to
jump to conclusions which may mask the true symptoms and make diagnosis
difficult for the Dr.  Your illness and sypmtoms are very real but to
assume they are caused by something without a full and proper diagnosis is
not in your best interest.  Keep your options open, be pro-active and seek
alternatives until you KNOW for sure what the problem is.  My daughter has
been eating all sorts of previously prohibited foods for three months now
and not only has she not had a reaction, she is healthy, happy and full of
energy.  She celebrated with the family the other night by buying 6 Pizza
Hut pizza's to share with us.  We had been banned from having this pizza in
the house if she was home as it was too difficult for her to cope with.

She is still seeing her Dr who is monitoring her health as any caring Dr
would but has told her that based on the test results she has no problems.

He has assured her that if she has any porblems he will do a biopsy but
doesn't beleive it is necessary.  He has researched not only her history
but CD as well to enable him to make an informed diagnosis.

Again many thanks for all your advise, recipes and support.  Keep up the
good work and remember to see the sunshine.

Ruth
Perth Western Australia