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Hi all,

Sorry it took me so long to get back to you. Just got out of the hospital.

My question was since I have been tested for everything   else (crohns, UC,
parasites,bacteria's) and have  gotten negative results X 3, yet seem to
have all the s/s of CD. Is it worth staying sick to get a diagnosis? Or
just go on the GF diet? I have two doctors that are not very cooperative.

The results were surprising. Two out of three that responded said they
just finally went GF on their own, after, like myself waiting years for
a Dx. Since being gluten free reversed their symptoms, and gave them
better health almost all said they felt responsible for their own health
and getting an "official Dx" was not importatnt to them personaly.

Of those that stated it is better to stay on a regular diet with gluten
products, The number one reason was for insurance coverage concerns, and
Doctors will never take you seriously without an official Dx.And then if
you needed an official Dx in the future, the gluten challenge you must
go on makes you more ill so therefore it is worth the wait to get the
Biopsy.

I see both sides of the issue, and both have very valid reasons. It seems to
be personal as to what kind of doctors are in the area. as I said, I just
got out of the hospital, and my GP still stated he didn't believe I have
CD. I asked him to give me a medical reason as to why he believes this,
he stated and I quote "I don't know". He once again consulted with the
very GI specialist(?) That in the past asked me if I had been molested as
a child. This time being angry, I asked him do these women have GI bleeds
and clay colored mucousy stools too? when he said no, I asked then why the
&*^&## did you ask me that again? He is also the one who told me to
"Cheer up" in the past. I think I would have ripped out his heart if he
said that one again. I did ask him about CD and he said I do not have that
because pain is not associated with CD!   Ok He then said he would test me
for it, if My GP and I wanted to. This may sound like a cop out folks,
but if  a GI who likes to play shrink,tells someone to cheer up when
their intestinal lining is all inflamed, and then says CD does not
cause pain wants to biopsy you, would you bother with this person? I
made my choice. I cannot take this illness anymore. I cannot trust this
doctor to have the brain cells to Dx me even if my villi were completely
gone. I feel at my present illness state, I cannot wait to find a doctor
who I can trust to dx me correctly. I am going GF for now. Please anyone.
I live in NE PA USA. I need a GI who I can trust. I am willing to travel
within reason to find one. Could anyone help me? I want an official Dx as
if anything for me..the peace of mind knowing my true Dx.

Thanks to all. This listserv has been a Godsend!
Carol