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From:
Lisa Ercolano <[log in to unmask]>
Date:
Fri, 16 Mar 2001 11:47:48 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi, this is Lisa from Baltimore. I posted a week or so ago about the
symptoms that my 11 year old daughter is having, and has been having, for
about 18 months. (She did not tell us about them right away, as things
having to do with digestive disturbance, gas, diarrhea, etc. can be
embarrassing ... especially for prepubertal girls!)

Anyway, my daughter's IgG test for gliadal antibodies came up 104  ... high
enough above normal for our pediatrician to send us to a well-known
pediatric GI guy at the nearby University of Maryland. There, the doctor's
physical examination resulted in a "suspicion" that she indeed, probably had
Celiac, but further tests needed to be run. (Apparently, Olivia's
half-Italian and half-Irish ancestry predispose her to Celiac, as the
highest rates in the world are found in Italy and then Ireland.) Clinically,
she presented with loud stomach sounds, bloating and gas, as well as daily
diarrhea (interestingly, she only goes either once or twice in the morning,
and that is usually it.) The doctor also noted that she has some white
markings on her tooth enamel, which apparently is another indicator.

Surprisingly to us, the next blood work (different tests) came back
"normal," including the apparently crucial tissue transglutamenase test
(excuse my spelling, as this all is new to me.) The doctor did say that her
hemoglobin is on the low normal side, as is her iron level, but everything
does register under "normal."

As a result, he now says there is little way she can have celiac
disease. He has not given up, however, and is having her take a breath
hydrogen test (for lactose intolerance) and then, depending on what the
third round of blood shows, he will either do a biopsy (for celiac) or
an endoscopy/colonoscopy (I guess for suspected inflammatory bowel
disease or Crohn's.)

I read research by this same doctor on the Web that indicated that some
people who present like my daughter (testing "normal" on the tissue
transglutamenate test) may, in fact, be in the early stages of developing
the disease, and may present with a full blown (and more miserable) case of
it in five to ten years. Thus, I asked the doctor that if they come up,
ultimately, with no answer, would it make sense to put her on a GF diet.

No! Absolutely not! he told us. Too extreme.

Now I am confused. I realize people can be allergic to wheat, thus needing
the same GF diet as do celiacs.

Can anyone explain how the allergy is diagnosed, or whether, in fact, those
tests have already been taken. (She did have the IgA test, which was
normal.)

Only thing ain't normal is how she feels -- miserable.

Thanks in advance,

Lisa in Baltimore

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