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I want to thank everyone who responded to my post!  I got so many great
replies!  There were way too many to summarize them all, but here are a few
of them:

Leslie, your biopsy will most likely not be a true reading of your damage
because you've been on a gluten free diet.  The villi heal pretty fast so
to get the most accurate biopsy test results, you should be eating at least
3 slices of wheat bread a day for 3 weeks prior to testing.  If you're so
much better on a gf diet, it would seem like you likely do have CD.  Some
people with this disease are self diagnosed and are happy with that and
never get a medical biopsy to back it up.  It's a personal decision.  If
either child shows elevated levels, it seems they are good candidates to
hav the disease, but for your own piece of mind, I would have them tested.
Dr. Fine, who is a celiac specialist, can test you or your children through
a stool test (by mail) which is less intrusive than a biopsy.  Check out
his website at www.finerhealth.com.  You have some heavy decisions to make
.. it would be nice if you had a more informative doctor to help you
through it.

Put yourself and the kids on a gluten-free diet and feel better. Forget
about the biopsy, the results are not always conclusive. Why bother when you
can get the results you want from being GF.

My antigliadin test was 20, and that was considered "high"  (normal is less
than 4).  Based on my history (diarrhea, weight loss, anemia, fatigue,
abdominal pain), the positive gliadin test and improvement on the Gf diet
my gastro diagnosed me as being celiac.  An endoscopy was performed, but
because of a mix-up the gliadin test hadn't yet been performed so the
correct area was not biopsied.  My dr. did not think I needed to be tested
again for flattened villi.  His opinion is that improvement on the gluten-
free diet is a "gold standard".

I would say to put your son on the GF diet for sure;  maybe your daughter
could be on a "modified" diet - eating less gluten but not cutting it out
entirely - to see what her symptoms do.

Celiac disease can cause your son's symptoms without the gastro-intestinal
symptoms.  Damage to his intestines could still be done even though it
doesn't show.

here is the explanation we received from our blood tests.  I copied them
down for you word for word.  Hope this helps.  I found it an easy read and
the most coherent explanation.

Interpretation of the tests:

Normal values:  IgG-AGA < 18;  IgG-AGA<24;  IgA-htTG<13;  IgG-htTg<30

-- If each anitbody level is in the normal range, this practically (99%)
excludes the possibility of celiac disease.

__ If all the three tests are positive, there is a strong possibility of
gliadin sensitive enteropathy and further gastroenterological investigations
are suggested.

__ If someone has IgA dificiency, only the antigliadin IgG livel will be
elevated in case of celiac disease or dermatitis herpetiformis.

__In patients with celiac disease the antibody levels reflect the strictness
of adherence to a gliadin-free diet:

        __normal tests-results indicate a strict dietary compliance
        __elevated levels suggest a non compliance to the diet

I would try to find a pediatric gastroenterologist experienced in celiac
disease for your children.

hello, you really do not need a biopsy! if the diet works, then do it.
for your kids, i personally did not put my 4 year old thru it. she
improved drastically on the diet alone. until they have better tests
with more conclusive answers, i will keep her gf. it took me many years
and many tests to finally get an answer! it totally depends on your
doctor, where they take samples, the lab etc. why even bother? do you
need it on paper? i think not having it on your medical record is
actually a bonus. why pay more money if you have to switch insurance. we
have a great doctor and he stands by the  verbal diagnosis. he will put
in it writing if we have to have it at some point. i say it is your
call. put your childs health first before paperwork, tests etc. if they
do better gf, then so be it. it is hard, they will not be able to eat
oreos, pizza hut etc, BUT they will eat better than any other child they
meet, they will not be at risk for more auto immune diseases IF they are
celiac and go untreated. they recommend that all children with any neuro
disorder/disease go gf. gliadins effect every brain whether you are
celiac or not. you are not risking ANYTHING nutritionally by omitting gluten.

good luck with your choice and remember, there are PLENTY of celiacs who
have NO symptoms at all! please do not go by just symptoms. take care

Yes put your daughter on it as well and see if her gastro symptms ease.
Don't wait until she has full-blown cd(that is total villus atrophy) at
which point she will become very ill. Better to be safe than sorry.


Check out the work of Dr. Kenneth Fine. I just heard him speak this
weekend.