<<Disclaimer: Verify this information before applying it to your situation.>>
Hi all,
I am posting for a friend whose 5-year old daughter is
developmentally delayed, suffers seizures, and ongoing
chronic constipation (takes 17g Miralax daily per the
pediatrician's guidance to keep this at bay). The
pediatrician ordered a Gluten Sensitivity Blood Screening
Test for the child. Her scores were as follows:
Gliadin IgG 32.5
Unit: EU
Equivocal (25.1-49.9)
--Expected values--
<=25.0
Gliadin IgA 10.4
Unit: EU
--Expected values—
<=25.0
Reticulin Antibodies Negative
*All tests performed by Mayo Clinic Dpt of Lab Med and
Pathology
Based on these results, the pediatrician referred the child
to a pediatric gastroenterologist and directed the mother
put the child on a gluten-free diet right away. At the
visit to the pediatric GI a month later, he told the mother
that he never uses these tests for celiac and throws them
away – because all of us could test “sensitive” to gluten.
He said her daughter would need to go back on gluten, then
follow a specific bowel regimen for a while, and after that
have the celiac blood panel. At this point, she is trying
to decide what to do next. I am a firm believer in the
Enterolab Gluten Stool Sensitivity Test (no chastising on
that, thank you), BUT the husband wants to exhaust
traditional testing routes first and the mother just wants
to get her daughter help. She has just made an appt with a
doctor who does believe in the Enterolab Gluten Stool
Sensitivity Test and will see how that goes, but would
still appreciate insight from others who might have been in
similar situations. The mother did email a doctor
associated with a celiac website her daughter’s test
results and asked if her daughter should be gluten free and
he responded: “Not until confirmatory testing is
accomplished with a more sensitive measure like
t-transglutaminase or anti-endomysial antibodies.” That
reply seems reasonable to me if traditional testing is to
be pursued. Also, the child’s pediatrician was surprised
that no improvement in the constipation was seen after
being gluten free for a month. (My own thoughts on that are
that instant results are not always obtained and it’s not
unusual to continue getting some gluten in one’s diet for a
while after going gluten free due to a lack of knowledge
regarding which foods are safe, cross contamination, etc.
and if gluten continues, symptoms continue.) I should add
that I believe she is taking medication for the seizures as
well, but she hasn't shared that info with me. Again, she
would appreciate any insight re: children in similar
situations and regarding excellent pediatric GI doctors
that would be in the Fredericksburg, VA area (or within
reasonable driving distance) since she does suspect that
her daughter's symptoms are gluten related. I will forward
all responses to her and summarize later. Thanks so much
for your help!
Shirley
King George, VA
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