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I have a question, and would like to address those in the medical
profession or anyone that might have some good advice.  I have avoided
discussing my condition with my HMO doctor, because after going from
doctor to doctor with adrenal problems that they could not discover from
tests (Until I was finally given a 24 cortisol urine test) and never
discovered or was even slightly interested in a overweight patient with
no intestinal problems telling them she believed she had CD.

Now my grandchildren are showing symptoms.  Yesterday one of my
grandchildren was taken to the doctor with spotty rashes which occurred
after he ate a cookie at church. She had volunteerily taken him off
gluten and soy because it was easier preparing meals, since she found out her
younger child was reactingdeficition deficeit, rashes, illness that never
stopped, asthma, slow language development etc.)and this reaction ceased
with in two days when she she finally agreed to put him, at three, on a gluten
and soy restricted diet.  We didn't think the older boy had problems, until his
teacher mentioned that he had been so much more attentive in class the last
three weeks, (the same three weeks he had not had gluten)  Then he started to
react with a rash each time he had gluten in school.  She asked to the
doctor to test him.  The doctor told her that he would only consider it
if he showed signs of wasting and had extreme intestinal distress.  She
said that perhaps he should review some of the current data on CD, that
new research shows that there may be other symptoms.  He told her that
the rash looked like neglect to him and that she should have been
treating hsteroid the steriod cream he had given her a while back.  She said
she didn't want to keep treating him for symptoms, that she wanted to find
the cause.  As you can see his ego was effecting the situation.

This is the typical reaction to asking even the best doctors to look
into CD.  I am officially undiagnosere cooperatingecooperating from
adrenal problems.  I do not want to take a challenge. I get too sick even
with a slight slip. I have three daughters that see the same physician as I see
who have unexplained illness including bone marrow tumors and thyroid cancer
and a son who supposedly has Epstein Barr.   They don't want to go through this
hassle anymore with doctors (or go on a GF diet for that matter), but cannot
ignore their children's problems.

What do you say to a doctor when they tell you that "it is so rare a
disease it is not sensible to even test for it," or "who is the doctor
here?" or "I want to suggest a good therapist" even in the face of the
above mentilife threateningethreatening disease.  I have tried so many
doctors, I just deal with it myself.

I must go to a doctor soon for a check up.  Is there any material that
can be reviewed by a doctor that is not too long?  What is the current
ratio of CD patients to the general populace in Europe?  In US? Where
can I get that info in a research paper.  What should we say?  I am stumped and
I wish I could have some medical authority back me up with literature, rather
than challenging texpertiser's experise.  I can understand that they don't know
what's up when the gastrointestinal people don't even have it listed as an
intestinal disorder, but what can we say without causing a communication
problem?

Carol in NJ