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I was only going to send this to the writer of the topic but I thought I
would share with the group since my mind has been swayed by all the comments
re: self or doctor diagnosed.

I agree with the biopsy part but I can also see where people are
self-diagnosing themselves.  I had never heard of this condition and when my
son was 14 mths old and started his downslide in health I started visiting
doctors.  It took 1 GP who tried all his tests and sent him to a
pediatrician, she basically did all the same tests, and then said wait a
couple weeks and see what happens, I then requested another pediatrician
after asking around and when he saw Cody, he said he was sure it was celiac
but a gastro had to see him.  The pediatric gastro said classic celiac and
we need a biopsy.  Right from the start the GP knew that it was a
"malabsorption" (sp?) condition but could not find the problem.  I had never
heard of a condition like this and also knew there was something wrong in
the tummy area but whatever I fed him made him sick.  Yes, he is confirmed
by biopsy a celiac, took 6 mths to get him diagnosed, then they tested me
since I was sick around the same age as him but outgrew it by 3 yrs old.  As
an adult I have been anemic on and off and no one has ever tested me for
anything, just iron pills.  When Cody was born I nearly hemoraged (sp?) and
almost needed a transfusion, I ended up taking megadoses of iron since my
iron level was around 3 when I left the hospital.  Again no one considered
any other problems other than iron deficient anemia.  4 mths after Cody was
diagnosed I was tested and am also a biopsy confirmed celiac.  I was 34 at
the time and have been on the diet for 1 year.  As you can see my
frustration level in 6 mths of getting my son diagnosed is nothing compared
to the years other people have waited to get diagnosed.  With knowledge of
the condition in the family I can see why a person would want to get on the
diet especially if the doctors they are visiting are poo-pooing the fact
they may be celiac.  I would like to say that not all doctors are unaware of
the condition or slight the fact you may have the condition, but they seem
to be few and far between, based on my search and the comments from the net.

Sorry to ramble but just had to say I agree and disagree with official
diagnosis, it really depends on the knowledge of the individual and the lack
of medical support the individual is getting.  It may sound like a flip-flop
from my last message, get a biopsy confirmation, but after reading some
comments back to me I can see where people, especially parents of celiac
children, are ready to try something if they are not getting the medical
backing.

BTW, When my son and I were diagnosed we visited the GP and he was quite
interested as we were the first he ever knew that were celiac.  He has been
a GP for at least 12 years.  I send him the posters I get from the celiac
association and he puts them up in his waiting room for others to see, he
has also done research to bring himself in-the-know of the disease.  He at
least was a doctor that was concerned enough to send my son along when he
couldn't find an answer and concerned enough about future patients, to
research the condition.

Karen, Edmonton, Alberta, Canada
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