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From:
Russ Paden <[log in to unmask]>
Date:
Tue, 2 Feb 1999 21:40:16 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks to all who replied to my question about having a biopsy re-read. I
included the whole text rather than snipping bits, as each says something a
little different and it will all be of interest to someone questioning
biopsy results.

Carma in Phoenix

-------------
THE QUESTION:
-------------
I had a biopsy done by my HMO doc a couple of months ago and he reported to
me that it was clean. What is the possibility of having it read a second
time by someone who is more experienced in reading for CD? How could I find
someone who would do that, and how much would it cost? Also, if it is
possible, how would I go about getting a copy of the slides from my doc?

---------------
THE REPSPONSES:
---------------
just ask your dr for them either to borrow or a copy.  THEY MUST GIVE IT
TO YOU!
---------------
I asked for a copy of the biopsy report from my doctor.  He told me it was a
low positive for celiac and to stay on a low gluten diet.  I brought the
report to a second doctor who said it was neg.  He had me start eating foods
with gluten and did a second biopsy.  I was only back on gluten for less
than a week (not enough time).  Of course that biopsy came out neg. I then
brought the original biopsy to a 3rd doctor and he said it was positive.

Now for your question.  You would want to go to a Gastroenterolgist in your
HMO group.  This way it should not cost you anything more than a co-payment.
I would just call your doctors office and ask for a copy of your biopsy.
You or your ins company paid for it so you have the right to have it.
If you feel you need the slides you would have to get them from the hospital
where it was done.  I would wait on that until after you have brought the
biopsy report to another doc.
---------------
I agree that having a doctor more experienced in CD read the biopsy slides
is a good idea. I'm about to make similar arrangements. Such readings are
not just black and white, but often grade the condition of the intestine
for celiac damage. Hence also good for follow-up biopsies after going GF.

Doctors should be accustomed to requests for a "second opinion": I suspect
they have to send the original slides and hence would want to do that
themselves, doctor to doctor.
---------------
Carma, as my gastroenterologist explained it to me, those biopsies are not
hard to read, since either the cilia are flattened or they are not. But if
you were on a gluten free, or partially gluten free, diet prior to the
biopsy, it might fail to show any such damage.

Also if the doc who did your taking and reading of the biopsy wasn't a
gastroenterologist, I wouldn't hesitate to have a second reading, or even
second test.

I wonder why you are convinced that you have celiac in spite of the
negative biopsy. You could easily have a WROB (wheat etc) intolerance, or
any other intolerance, that can act very much like celiac, but simply
doesn't damage the gut the way celiac does. The mild symptoms are irritable
bowel syndrome and gas. Good luck.

If you want the stuff sent to another doc, just have him or her ask your
present doc to send it. I think they legally have to do so; your records
belong to you.
---------------
You can always get a second opinion. Unfortunately it doesn't mean that your
insurance will pick it up, but you can always get one. If you just have them
read the other doctor's results I don't have any idea what it will cost. But
if you have the biopsy done over, I know that the Mayo Clinice will do it for
around $1000, that includes the biopsy plus the doctor (at least 4 years ago)
I know for a fact that they sent my bloodwork back to the original Mayo clinic
rather than have it done here with any of the labs so that it would by done by
a specialist. That cost around $400 and was not in the figure I just gave you.
They may have changed this since they just recently opened their own hospital
in Scottsdale. I know of another physician here in the Ahwatukee area, and she
is  familiar with celiac sprue. I am somewhat sure she would be cheaper, but I
can't verify the quality of the hospital and lab that she uses. You can get
into either place without references. My money is always on the Mayo Clinic
because of the quality of their lab work and the expertise of the physicians.
Everyone sticks to  a generalized area, example the orthopedic doctors are
divided into foot and ankles, legs, shoulder, spines, etc.  You get the
picture. In other words the work they confine themselves to being more  of a
specialist. Therefore more experienced than most doctors (not always true, but
generally) Your physician by law is required to give you the x-rays or at
least copies and copies of all records. I had this done a couple of times to
take out to the Mayo Clinic with me. I tried for the original and promised to
return them. This has always worked for me.
---------------
the ususal proceedure in the US for a biopsy is for the doctor who obtains
the specimen to send it to to a pathologist for interpretation.  The
pathologist then sends his report to your doctor who passes it on to you.
The pathologist may be on the staff of the local hospital or he may be at a
distant medical center.  So you can ask your doctor's office for a copy of
the report and that should be easy assuming you have paid your bills.
Legally it is your report, not the doctor's. Specimens are kept for several
years at the pathologist's lab.  You or more likely your new doctor can get
the specimen or slides made from it by making a formal (and legal) request-
the pathologist being legally responsible for that bit of tissue in his
safekeeping.  Then the tissue can be re examined for independent
confirmation, the cost being probably about $100 assuming no new slides
need to be made.  Good luck.  Most likely your gut had healed itself by the
time the biopsy was taken.
---------------
My suggestion is to call Dr Fasano at the Celiac Research Center at the
University of Maryland or Dr. Joseph Murray at Mayo Clinic. they are both very
interested in Celiac Disease and would be able to tell you if your first test
was done by a lab who is capable of reading the results. (have the results in
front of you if possible). A good gastroenterologist should be able to send
the specimen to whatever lab you designate. I hope this helps and good luck in
you search for an answer.
---------------
A couple of things to consider.  Did the GI DR take sufficient number of
samples and from the right places?  I had my bx re read as I didn't believe it
was positive.  You simply ask the hospital to send it to the pathologist-often
you need to sign a release.  Dr. Murray suggested on this list that I send it
to the University of Iowa where he used to be.  The second reading cost me
$100.  He is now at the Mayo clinic in Minnesota.
---------------
I have no idea, but my biopsy (hmo) was also negative. It was after 2 months
gf, it's true, but I have to be as careful about gluten as any celiac.

The doctor told me that a pathologist reads all slides. If they see anything
even slightly questionable, they have it read by another pathologist. Still,
(my opinion, not the doc) if they aren't particularly educated about the non-
standard or less obvious effects of celiac, they could easily miss it from
what I've read here.

I didn't pursue it further because I figure I have celiac but it wasn't
diagnosed for some reason. Perhaps it is to my advantage to have an official
rule-out, in case I have to apply for insurance of any kind. They can't
exclude from coverage all the possible related problems. (My son is biopsy-
diagnosed, so I know the genetic element is in my make-up.)
---------------
We had this done for our daughter, but it was at the
request of our new dr.  He asked us to obtain the slides from our
daughter's first biopsy, which was a couple of years ago.  I called
the hospital where the first biopsy was done, asked for "medical
records," and asked what the procedure was for obtaining the slides.
They loaned them to me, and the new dr. told me where to send them,
and I had him return them to the original facility.  So, once you
have located a new dr., you could initiate that procedure.  I didn't
pay anything, except I had to get the slides from the University of
Chicago and pack and ship them to the Mayo Clinic.

A pathologist is the dr. who actually "reads" the slides.  They make
a written report which you should also request every time you have a
biopsy, so you can see exactly what they are saying.
---------------

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