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Hi,

I will explain how my diagnosis went and then perhaps you will be able
to let me know what is normal for this.  If there is indeed a normalness
to it all, because I understand there are all different ways to go about
this stuff.

I went into the doctor for another reason (family doctor).  I have been
having many problems.  Biggest concern for the doctors has been my
anemia because it is pretty severe hasn't been correctable.

*This* time the family doctor sent me in to a gastrologist who did a
colonoscopy and an endoscope...seeing my small intestines looking poorly
- he did biopsies.

The lab report went into my family doctor and *I* had to call them to
find out what was going on.  They really didn't know much and saw a
possible problem with gluten for me.

Finally about a week or so after that - the gastrologist's office calls
and says they want to do more testing - I went in a couple of days later
where they pulled some blood.  Telling me really nothing, and then they
said that the gastrologist would be having me in for a consult in a few
weeks about all the test results he'd found.  Meanwhile because of my
gluten problems (according to the family doctor) and the biopsy report
my 'family' doctor had received...my daughter went in to the family
doctor and her tests came back positive. (Me *still* not having an
official diagnosis from all the tests that had been done...from my
gastrologist).  So we went gluten free.

I went in today (finally) to my gastrologist and he talked to me about
the fact that CD was confirmed now...and I needed to start on the gf
diet.  I told him I already had done that.  Then he said that in 3
months I should come back in for another biopsy.  He also told me that
they didn't have much information on CD and that for further information
I should contact the Celiac Foundation...ask them for information and
they'd send me all the information I would need.

Yep - that was about it!

Then when I went to make the appointment for the next biopsy coming in 3
months...and was stopped like a celebrity to be told that *I* was the
very first Celiac that they had ever met.  They had tested for CD
before...but usually to rule it out.  I couldn't believe they'd not had
a person who had CD before.

Got to say...I was hoping for a little more support from my
gastrologist's office.  But if I am their first one...geez - even when I
was talking to the doctor and the nurse I felt like I was telling them
more than they were telling me.  I have about every book I can get my
hands on to read (and have been reading them), and then of course the
internet and all of you folks that have been so very kind and helpful.

Is this right?  I mean...maybe I should hunt up a gastrologist that has
folks working there who have dealt with CD before???  I was kind of
blown away when I was told I was the first.  And the doctor there who
basically had next to NO information on it to give me, except to contact
the foundation.  I was just so surprised.

I then asked if I could get a copy of my test results...not that I
understand exactly where they put me.  I signed a release form and they
photo copied a single page which showed me the 'result' and the 'range'.
The Doctor didn't do this for me..or a nurse.  But it was the lady
making my next appointment that did it.

I just felt like the whole deal was kind of weird and am wondering if I
should take a look around for someone who knows a little more than I do
about this to be dealing with this on the medical side of things.

Thanks much,
Robin

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