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

Hi!

My daughter is 10 years old and I am trying to determine if she may have
Celiac Disease.  I am looking for other people's "stories" (i.e.,
experiences), especially in terms of children.  Any suggestions will be
greatly appreciated.  I would like to hear other people's symptoms.  I have
a lot of questions, so please answer what you can, hopefully if everyone
shares their different experiences it will help me figure out what to do
with my daughter.

It started the first time I gave my daugher cereal, she cried for 2 hours
until she did the projective vomiting.  She was considered a "colicy" baby.
 She cried a lot.  She was alergic to many diapers and baby wipes.  After
about a month of baby food, she refused to eat any more baby food.  The
only thing she would eat was hot dogs, so I would take off the skin and cut
them into small pieces.  She had numerous ear infections which ended up
with Tubes at 18 months.  She had urinary tract reflux when she was 3 but
outgrew it by the time she was 8.  She has been on antibiotics for most of
her life from a few months old til about 8 years old because of ear
infections and urinary tract reflux.

All her life she has had abdominal pain with vomiting.  When she was a baby
I asked to have her tested for GERD, the doctors told me she just had car
sickness.  (I tried elevating the bed 45 degrees, but that did not seem to
help).  As she got older and she would vomit daily on the way to school and
at school, the doctors said it is anxiety about going to school.  Even
though we would go places like Discovery Zone and she couldn't play because
her abdomen hurt so bad and she was afraid she would throw up.

She has been a very sickly child.  She "catches" everything that goes
around.  Right after Christmas she caught a "virus" that lasted 5 days for
her and 2 days for her cousins.  On the first day of the virus she vomited
16 times.

She has been treated with all types of prescription Antacids and other
drugs including Zantac, Predisone, Reglan, none of which have worked.  She
is presently on Prevacid.  It is too soon to tell if this is working.  She
has been treated for abdominal migraines (which she does not seem to have).

At the end of January she became ill again and had to be hospitalized.  She
was in the hospital for 4 days.  After she was released from the hospital,
we went to Children's Hospital to the gastroenterologist that we have been
seeing most of ther life.  Both the pediatrician and gastroenterologist
keep indicating to me that it is all psychological and I should take her to
a pain clinic.  Last year I took her to a social worker to help her cope
with her "psychological" pain.  I DO NOT believe it is psychological and it
worries me what the pain and the fact that the doctors keep indicating that
it is "psychological" will psychologically do to her, let alone her poor body.

We did have the celiac blood test done right after her endoscopy.
Unfortunately the test was done after 2 1/2 weeks of not eating, vomiting,
i.v.s and then a bland/liquid diet.  I am assuming that 2.5 weeks of being
off of glutens would make the celiac blood test negative whether it was or
not.  Does anyone know how long it takes to get the glutens out of the blood?

Also, when an endoscopy is done, what exactly do pathologist look for?  If
they aren't aware that celiac is something that should be ruled out, will
they still look for it?

She also has TMJ (which I believe is directly related to the abdominal
pain), which is worse when her stomach is worse.  She always has swollen
lymph glands in her neck.  Her stools "float" in the toilet.  The
gastroenterologist got angry with me when I asked her about this.  She said
that doesn't mean anything unless they are oily, foamy and smelly.  Does
anyone else have "floating" stools without having the smell, oil or foam?

Does anyone know a good doctor in the Maryland area who would be willing to
help me find out what is wrong with my daughter?

Has anyone dealt with John Hopkins?

I have been going to the same gastroenterologist at Children's Hospital in
DC and she is very rude and doesn't like me to ask questions.  She just
seems to want me to accept the fact that this is all "psychological" and I
won't do that.

I am thinking about trying to give my daughter a few wheat crackers and see
how they affect her.  I feel kind of guilty, especially if they are
"poison" to her body.  Has anyone tried this and if so, what happened?

Thanks for any help you can give me, sorry for going on and on.  I know I
left out a lot, but hopefully someone out there can give me some insight
what to do.

Linda