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The vast majority of responses were that since we do not have a biopsy
diagnosis, we have no diagnosis at all, and we could say nothing until
the info is needed, and then call it an allergy.  This is my most
comfortable option, because frankly, my guys aren't celiac, they are
mildly gluten intolerant.  My father in law ate wheat bread three times
a day for 76 years before he was ever "diagnosed" and he is quite
healthy, though he had frequent loose stools.  My husband's IgG allergy
tests (which also aren't universally recognized) shows an IgG reaction
to both wheat and gliadin, (and Dr. Fine's test showed an IgA reaction),
so the allergy comes through several vectors.

Some responses said that most insurance companies, life or health,
haven't a clue about celiac and so we shouldn't worry.

Others point out that if we ever need a "real" diagnosis, the guys would
have to actually start eating gluten again, which would be a bad thing.

One dear soul sent a one liner wondering if I wasn't teaching my son
that he should only tell the truth when it benefitted him.  This is a
valid concern, and others may be wondering the same thing.  Where
insurance forms ask about allergies, I will disclose allergies, and
provide the York Labs paperwork, which may or may not be believed,
because IgG testing is not mainstream.  If insurance forms ask about IBS
or Celiac, I will truthfully say no.  He does not have celiac or IBS,
nor has he been diagnosed as such.  If the military or whoever else
needs to know about what he can and can't eat, you bet I will disclose
gluten intolerance.  If he had celiac (ie intestinal damage) I would
disclose.  This isn't about lying, or hiding information, really.  If I
knew with certainty that there would be a good purpose in disclosing the
intolerance, and that whoever it was wouldn't automatically assume
GI=CD=damage=risk.  My son is only two, and was gf early enough that
there will be no long term effects.

Lynn

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