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I have been reading your list for a couple of weeks now and struggling with
my own progress towards a diagnois, or at least a plan of action for my life
and was wondering how many of you out there have taken to the gluten free
lifestyle without actually being told by a doctor to do it?

Here's my history.  My father was diagnoised with celiac sprue about three
months ago with appropriate blood tests and a positive biopsy from his
endoscopy.  While he was being tested, I asked about his symptoms and some
of the ones he had - tiredness, muscle aches, anemia - are things I had been
experiencing but not on a high enough level to get my family doctor to treat
me very seriously.  I started reading up on celiac, mainly on the web, and
discovered that a few of my other strange symptoms could be attributed to
celiac.  I have blisters in my scalp often.  I had thought they were
pimples, but now I'm not so sure.  My stools float, which has been going on
for so long, I thought it was normal.  I requested the blood screening and
my results came back strange enough to warrent a referral to a GI.  I was in
the negative range for the TTA, weak positive for the IGA, and a moderate
positive for the IGG.  The GI discussed things over, said my results weren't
typically, and ordered a endoscopy with biopsy.  The results came back as
negative.  He told me to eat whatever I want, he really didn't think I have
celiac and thought it would be a horrible thing for someone so young as me
(28) to have because of the difficultly of the diet.  I go back to him in
another couple of weeks to discuss my malabsorption issues.

During the couple of weeks between the blood tests and the biopsy, I cut
back on my gluten intake.  I didn't eliminate it, but instead of eating 4
slices of bread a day, having a bowl of cereal, and eating crackers and
pretzels as snack foods, I only had two slices of regular bread a day.
Everything else I changed to try to make it gluten free just to see what
would happen.  And the amazing thing was I felt better during those couple
of weeks.  I wasn't as tired, I had more energy, the blisters on my scalp
were gone, the ache in my hip was gone.  And then I went back to eating my
normal load of gluten after getting the biopsy results because I was
discouraged and now I feel tired again and the blisters are back.

I think I've basically decided to go gluten free, but I'm also going to go
back to the GI to see if there is anything else that he thinks could be
causing all this.  So I guess I'm just looking for some support.  Have you
decided to go gluten free on your own, and how did that work out for you?

Thanks for your responses.

Tracey

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