<<Disclaimer: Verify this information before applying it to your situation.>>

Hi everyone,

  I have an 11 y.o. daughter who is undiagnosed, but has been GF for 2 years.
 I have thought about how to have her diagnosed, and it comes down to making
her very sick in order to do this.  She does not want to eat gluten for all
the money in the world, so I have left that decision up to her.  Someday it
may be important to her.
  Meanwhile, I thought perhaps I myself could get a biopsy done to either
rule out or confirm CD in myself, so that we could have that as another
assurance toward her diagnosis.  Also, I realize that CD can be inherited, or
familial, and I know my brother has problems with wheat, and my aunt also.
 Ok, so here's the deal:
  Monday I went to see a Dr. to get started on the road to a biopsy for me,
and when I explained this all to him....his reaction was..."your daughter
definitely has CD." ...Then I explained about my getting a biopsy, he said
flatly (a little like he thought I was nuts...) "You'll never get a Dr. to do
that for you. What if you died after the biopsy? then they would say, why did
you do that?"  I did convince him to give me a blood test for antigliadin
antibodies.  But he really thought I had pulled something out of mid air
here. (even tho' he immediately agreed that my daughter does have it...)   He
said he thought I was lactose intolerant.  Then he began to read in a medical
book (obviously hasn't ever treated any CD patients KNOWINGLY) and it says
"high incidence of lactose intolerance in CD." Hmmmm.... so I am scheduled
for blood work in a couple weeks.  His reasoning was that no matter what
turns up on the test for me, it won't change what we do for my daughter.  So
he is disinterested.  Forget the fact that I might want to know so I don't
continuously assault my own gut and set myself up for further damage.

  My questions are many:  I thought I had read here somewhere that if you do
have CD in a family member, then all those in lineage should get tested...or
is he correct that no GI would do this for me? Seems like this advice could
leave lots of people undiagnosed and unaware.
  Also,  is biopsy that touchy?
  He said that he would only need three things to be able to make a diagnosis
of CD: 1) evidence of malabsorption (fecal test for sugar) [yuk]
2) biopsy  of small intestine
3) improvement on GF diet.
  Is #1 above used in diagnosis very much?  I don't see many here discussing
that one.
   He asked me, "what if your daughter were to be tested and it came back
negative? Would you begin to give her gluten again?" and I said "NO, because
it makes her sick. But I would want to know what it WAS...it has to be
something..."  To which he replied, maybe it is Irritable Bowel
Syndrome...And I said "What Is That?" and he replied, "We don't know. Medical
science is limited...."
  Ok, I realize he is only a Dr. of Internal Medicine, not a GI.  But I felt
as though he really didn't want me to know anything about a disease HE didn't
know about.  (I call it the god syndrome).
  When a Dr. cannot figure out a real diagnosis, and they give it to IBS, is
that really where they stop?  They just leave the patient there? Dead end? (
I know, all Dr.'s are not alike, and there are some that are very concerned
for the patient's health--I just don't think they live here...)

FWIW, I did take his advice and go Dairy free, in order to see if that is a
problem for me.  Haven't noticed great changes yet, but willing to give it
lots of time.
  Thanks in Advance for any responses,
Betsy in Coastal Northern California