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

First I thank you all for your kind and helpful responses and your support.
I am sorry I couldn't respond personally to everyone who wrote. I received 27
responses. Everyone's experience is a bit different and people's opinions
differ as well. The following therefore, is not a medical summary but a
summary of opinions and experiences. Thanks and Happy Healthy holidays to
everyone. Tina in Oakland, CA

Biopsy in a Child:
Eight of the respondents were parents with Celiac kids (and some are Celiacs
themselves too).The parents were divided on whether or not to do the biopsy.
Several kids had had it done when they were about 3 to 8 years old and did
fine. Other parents felt uncomfortable with putting their kid to sleep and
felt that if a gluten free diet made such a great difference that the kid
should eat gluten free and decide when she is older if she should have a
biopsy. One person pointed out that a biopsy diagnosis opens no doors to
treatments or services. Several people said that it would be better not to
have her diagnosed as it would affect her insurance for life as a
pre-existing condition.

Wheat Allergies:
You don't outgrow celiac disease however you can outgrow an allergy to wheat.

Wheat allergies are quite common (it is one of the top ten food allergies),
and many allergies change over time. Allergies may disappear especially if
the sufferer avoids the allergen for a while, although nut and seafood
allergies don't often go away. Overexposure to substances can also bring new
allergies on, so a varied diet is important.

A wheat ALLERGY is measured by a blood test called an IgE and a RAST test.
Wheat ALLERGY is very RARE. There are wheat allergies that are not celiac
which is a T-cell immune response versus the other cellular responses for
allergy as well as other diseases that can mimic celiac.

Time on Gluten to Redamage the Intestine:
The amount of time one should eat gluten after stopping in order to strive
for an accurate test varied from 6 days to 6 months. Several people said one
month of eating the equivalent of four slices of whole wheat bread a day.

Make sure reintroduction to wheat is slow to prevent sickness. Another person
thought that within 6-8 weeks or even sooner in a child the intestines would
be healed and it would take a longer time to redamage them. Another said 3-6
weeks eating as little as one slice of gluten bread a day would show damage.

One mom said that her daughter was gluten free for one year. The doctor did
a biopsy and it was normal. She then was told to eat gluten for ten days; she
ate it for six days and stopped for the last four days as she was so sick and
the biopsy showed significant damage in her child. Self-diagnosis is fairly
common due to the unpleasantness of the gluten challenge.

Symptoms in Kids:
Tummies hurting, bottoms hurting. Was always very thin and had a round
stomach and was anemic from time to time. Underweight. never slept more than
3 hours at a time because he was always hungry and in pain. Irritable, fussy
child, loose stools and a bloated stomach, anti social, light colored smelly
diarrhea. Never had a formed stool.  Upset tummy and a lot of gas and loose
stools. Another symptom some celiacs may manifest is floating stools. Stools
may float for either of two reasons: 1. steatorrhea, is when the celiac does
not absorb fat and it passed on in the stool, which is a pale color, floats
and leaves an oily film on the water surface; 2. when there is a lot of gas
and that gas is absorbed into the stool it floats because it has air in it
and does not leave an oily film. This may be a dark color. One can have
stools tested for fat content.

Celiac Disease Blood Tests:
Gluten Enteropathy(or Coeliac disease or Celiac condition or gluten
intolerance) is measured with the IgA and IgG antibody tests for gluten and
the ENA endomesial antibody test for gluten. Gluten enteropathy is
relatively COMMON - more common than is generally realised. Anti-gliadin
tests are most accurate for kids two and under; the anti-edomysial is most
accurate for people three and up. Transglutaminase is thought to be the most
accurate test there is currently. There are more sensitive tests (the ELISA
anti-endomysial antibody test), often celiacs can have negative blood tests
but show villi damage.

Labs and Blood Tests:
Four people suggested the lab at University of Maryland for the most accurate
of tests. Transglutaminase is the most accurate of the tests today. The
doctors there are Drs. Horvath and Fasano. Testing is free (get dad tested
too), just have to pay for blood draw & shipping.  Contact them at
www.celiaccenter.org

U of Utah is working on a blood test that will be available in the future
where you won't have to be eating wheatto be tested.

Labs in the US specializing in gluten antibody tests:

 >1) IMMCO Diagnostics, 963 Kenmore Avenue, Buffalo, NY 14223 716-876-5672,
 >1-800-537-TEST (8378), [log in to unmask]
 >
 >2) Immunopathology Laboratory, Dept. of Pathology, 5233 RCP, University of
 >Iowa Hospitals and Clinics, 200 Hawkins Drive, Iowa City, IA 52242, phone
 >(319/356-2688/8470)
 >
 >3) U. of Maryland at Baltimore (Baltimore, MD) 1-410-706-1997:  Pediatric
 >Gastroenterology & Nutrition Laboratory, UMAB/Bressler Research Building,
 >Room 10-047, 655 West Baltimore Street, Baltimore, MD, 21201, Attention:
 >Karoly Horvath, MD, or Athba Hammed, Research Assistance.  Phone (410)
 >706-1997 or Fax (410) 328-1072. Baltimore is where the 3-year blood study
 >is being done for celiac disease and their first degree relatives. Dr.
 >Fasano and Dr. Horvath are very involved with celiac research there.
 >
 >4) Specialty Laboratories, 2211 Michigan Avenue, Santa Monica, CA 90404,
 >phone (800) 421-7110, HTTP://WWW.SPECIALTYLABS.COM
 >
 >5) Mayo Clinic =  Dr. Joe Murray now works there.
 >http://www.mayohealth.org/mayo/common/htm/index.htm
 >
 >6) Prometheus, Inc. 5739 Pacific Center Boulevard - San Diego, California
 >92121, Tel: (619) 824-0895 / Toll Free (888) 423-5227 / Fax: (619) 824-0896:
 >The president of Prometheus wrote the following to me: The company is
 >completely focused on gastrointestinal diseases, with particular expertise
 >in Inflammatory Bowel Disease and Celiac Disease. We have, in my humble
 >opinion, the best option for Celiac testing.  In fact,
 >at the recent International Celiac Disease Meeting held in Marina Del Rey,
 >CA, Dr. Peter Green from NY described a case where a specimen was sent to
 >one lab, and came back negative.  Due to his suspicion, he then had the
 >specimen sent specifically to Prometheus, which he uses regularly.  Result:
 >Positive.  And now, correlated with biopsy.
 >
 > In a nutshell, not all labs or all tests are the same. Prometheus worked
 >very closely with the leading clinical research specialists and pediatric
 >gastroenterologists to optimize their testing system, and then validated it
 >with their clinical specimen banks.  Elaine Monarch of the Celiac Disease
 >Foundation can confirm our focused efforts in this area, as can the
 >clinicians, like Dr. Green, who rely on Prometheus for the absolute best in
 >Celiac Disease serological assessment.

For an excellent in-depth explanation of the tests and what they mean, try
this website: http://www.enabling.org/ia/celiac/diag-tst.html#US

Other Information:
Several people suggested that my husband be tested as well.

False negatives after reintroducing gluten are common:  biopsies can still
produce an 8-15% false negative.  The blood tests also give false negatives from
10 to 50%

One person suggested working with a dietician to plan out the healthiest gf
diet possible, and keep her on it. Put other common allergens(or at least the
stuff that bothered her dad) either off her diet entirely or at least rotate
them to minimize the chance of developing sensitivities or damage from
existing sensitivities.  When she's startingschool and gf becomes a
challenge, then maybe you can think about the challenge test.

I also received an excellent long article covering a myriad of subjects that
is too long to summarize here.

Several people suggested keeping siblings gluten free for the first year to
three years of their life as this may avoid problems.

One person suggested looking at dairy as the cause of the problems.

There is apparently a temporary celiac condition in infants.

And Finally:

Use your best judgement and don't be afraid to question and disagree
with the doctors.