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Hi Barb,
    I tried to reply to your post yesterday, but the power went out just
as I was ready to send it off to you.  I felt strongly enough to try
again--even though it's a lengthy reply.
    My child is a biopsy proven celiac, but he never had any of the
obvious celiac symptoms.  No diarrhea, no gas and bloating, no
constipation-- none of that stuff.
    His behavior was terrible.  He was constantly irrationally angry.
You never knew what would set him off.  Someone getting between him and
the TV set could set off a storm that would last hours.
    His only complaint was that he felt that he couldn't swallow well.
He refused pills, meat or anything with a tougher consistency than yogurt
or cooked noodles.  I discussed this with both his pediatrician and his
allergist and they felt the problem was psychological.  This seemed
reasonable as he had had several episodes where his throat closed due to
an allergic reaction.
    But over the years his behavior worsened.  Our other children were
afraid of him as was I.  He was constantly being suspended from school.
His grades were in the dust. We tried counselors, who sent us to
psychologists who sent the child to a psychiatrist.  My son was put
(involuntarily) in a mental hospital.  He returned home and we were told
not to waste any more money on counseling.  He was not engaged in
treatment.
     We became our city's coordinators of  Tough Love in order to cope.
Tough Love's policy is to call the police when the child is violently out
of control--so we did.  The police came to know us only too well.  They
advised us to get the child out of the home for the sake of our other
children.
    Meanwhile, I still felt that food was the problem.  Allergy testing
revealed nothing, but my son was constantly hungry.  And the words that I
most dreaded to hear out of his mouth was "I'm starving."  Those words
presaged some of his worst problem times.
     I went back to the pediatrician without my son, and told the doctor
that I wanted a swallow test.  Previously, I hadn't known that could be
done, but a friend had had his daughter tested and it gave me the idea.
The doctor told me she would do it but that she felt my son had a true
genetic mental illness.  This would not solve the problem.
      The test revealed that my son had a severe stricture of the
esophagus. He was sent immediately to a pediatric gastroenterologist.
And when he did a biopsy in the course of stretching the esophagus, he
found classic signs of celiac disease.
     Even then, the GE did not believe it.  My son showed no signs of
celiac he said.  He was thin, but he was not terribly short.  And as I
mentioned he had none of the usual gastrointestinal signs. There were
signs that my son had gastroesophageal reflux, but the child never felt
anything.  His receptors had evidently been burned out.
      The G E ordered tests.
       Barb, my child was negative on every thing but the IGG.
       Because of that, the GE hesitated again.  But he talked with my
husband and me, and decided on a trial period of the GF diet.  Thank God
he did.
     My son's behavior changed within a very short period of time.  At
first I didn't dare to believe it.  Then other people made comments.
They noticed too.  His grades went up.
      He had the follow-up biopsy after three months and it showed vast
improvement.  The G E was convinced too.
      There is a reason that the biopsy is the gold standard for
diagnosis.  If the blood test results are in any way equivocal, and you
have doubts, please get the biopsy.  Trust yourself.  You are the child's
mother.  NO ONE KNOWS THE CHILD AS YOU DO.
      If the biopsy is also negative, you can breathe a sigh of relief.
It won't do any lasting damage.  IF the biopsy is positive, you have the
satisfaction that you caught it as early as you could.
                                                Christine in Colorado