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Hi,

My son Andy is almost 4, and autistic.  He has had digestion problems
since he was tiny (colic as an infant, followed by frequent recurring
diarrhea of unknown origin).  Our previous pediatricians ignored the
diarrhea and apparent digestive discomfort, making non-helpful
suggestions such as "dilute his juice", "he's just over-sensitive", etc.

In late September, after I thought the blood tests had been done for
CD, we put Andy on a (not-very-strict) no-gluten and no-casein
diet.  It turned out that the blood tests had NOT been done, so in
mid-October Andy again resumed eating regular food.

The CD blood tests were finally done in late October, about one week
after resuming a normal diet.  The blood was sent to Specialty Labs in
Santa Monica.  Results were "normal".  In November, we again began a
casein-free diet.  This seemed to help a little, but the occasional
diarrhea continued.

At Christmas, after a particularly nasty round of diarrhea, I decided it
was time to try a gluten-free and casein-free diet.  This decision was
based on what I've heard of possible connections between gluten and
autism, plus Andy's digestive problems, plus probable celiac disease in
our family.  Andy's digestion has improved again, and his disposition
has improved a lot.  He used to appear to have frequent abdominal
discomfort (he's not able to describe what he's feeling, so we could
only guess), followed within a few hours by an attack of smelly nasty
diarrhea.  Now these episodes are rare.  Last week he ate some
play-dough (made with wheat flour) and for the next two days he had a
nasty bout of diarrhea and odd behavior.

We have a new pediatrician, and Andy has finally been seen by a
pediatric gastroenterologist.  The GI guy said that from Andy's history,
it sounds possible that Andy might - or might not - have CD.  (He told
me about the "celiac physique" mystique that he firmly believes in,
which means a child with meaty buttocks is not likely to have CD.
Apparently he didn't believe that Andy's buns could have filled-out
during the preceding 6 weeks on the GF diet!)  The GI guy will not even
try to do any tests on Andy until we have returned Andy to a normal diet
for at least one or two months.  The GI guy says any tests are pointless
as long as Andy is on a GF/CF diet.  He says there's no rush to do the
tests - we could even wait a couple of years if we want.  He says that
*IF* the tests indicate possible CD, he prefers the triple-biopsy
approach to diagnosis.

Has anyone else gone through this on-diet/ off-again nonsense?  Andy has
become pretty accustomed to the the diet, and I hate confusing him with
rule changes every couple of months.  Not to mention the possible
discomfort "regular" food may cause him.  On the other hand, if there's
something else going on, or even CD with untreated side-effects, I would
prefer to know what is really causing Andy's digestion problems.  In the
long run, it seems better to get an accurate diagnosis so that as Andy
grows up we/he will know for sure what food(s) are a problem for him.

We have decided to resume a normal diet starting this next weekend.  I
am guessing that by Monday Andy will have diarrhea and behavior changes.
Nothing like setting expectations, huh? :-)

Sorry for the length of this message.  I hope someone can offer insight
on this frustrating diagnostic process.

Beth Jones
Colorado Springs, CO