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Sorry I took so long to get this summary out.  I was hoping for more replies,
but finally decided to stop waiting.  The replies I got were definitely
informative.  The fact that I didn't get more answers tells me a lot too.  I
don't think most infants with celiac disease suffer permanent nerve damage
and muscle wasting like my husband did.  A few of you wrote to say that you
did experience leg problems--everything from a "foot drop" to weakness to a
slightly different "stride."  This was even true of Celiacs who were not
symptomatic until adulthood.  One of you mentioned that you thought age
didn't matter.  The reason I had asked about Celiacs who had been diagnosed
as very young children is because all Celiacs are not symptomatic at a young
age.  Although Celiac disease is a lifelong illness from the time of onset,
the first onset of symptoms can occur as late as age 40 or beyond.  Usually
some sort of medical stress brings it on (in the case of toddlers that stress
may be being fed gluten before the digestive tract is mature enough to handle
it).  Toddlers have much more serious symptoms than do adults with Celiac
disease.  When Celiacs have their first symptoms as toddlers, it is much more
life-threatening, because they have soooooooo much growing left to do.  They
can suffer permanent growth stunting (which Celiacs who have their first
onset of symptoms as adults will NOT experience because they have already
finished growing).

My husband was diagnosed at age 3 after the doctors confessed that he was
already on his deathbed.  They said that it was too late to save him.  His
malnourishment was beyond treatment; his villi had been damaged so much they
could not grow back.  Because many church members in 3 different churches
prayed for him, he miraculously survived (the doctors were very shocked).
But ever since then, he has walked with a limp.  His leg muscles are very
small and he has significant nerve damage--probably from lack of proper
nutrition during the "critical period" of leg growth.  Another very probable
theory (as I included below) is that of an autoimmune reaction against my
husband's nerves.  This would account for his lack of muscle "bulk" in his
lower extremities (when the nerve supply of a muscle is compromised, the
muscle atrophies).  Nerve damage is also VERY difficult to repair, which also
makes me think that an immune reaction against his nerves is likely.
Sometimes a "catch-up" period of growth is possible with treated
malnutrition, even in children.  My husband is 6' 1"--not the short height
his doctors predicted he would obtain.  So, his bones were able to recover
from the lack of nutrition.  His leg nerves evidently could not repair
themselves.

The most helpful email included this information:  "About 5% of celiacs have
neurological complications, according to a GI textbook used in medical
schools. One of the more common is peripheral ataxia, especially in the legs.
There has been a debate as to whether this is a result of childhood
malnutrition (ala osteoporosis) or a direct immune system attack. The
consensus seems to be moving in the direction of the latter."  The 5%
statistic explains why most of you haven't experienced the nerve damage that
my husband did.

One more interesting find (from a library book I checked out on Celiac
disease).

In 1888, a man named Samuel Gee published an article on Celiac disease after
giving a lecture on it at London's Hospital for Sick Children.  Here are some
quotes from his article:

"The patient wastes more in the limbs than in the face, which often remains
plump until death is nigh. . . .  Muscular weakness is great:  muscular
tenderness is often present."

Even more interestingly, he says:  "The course of the disease is always slow,
whatever be its end; whether the patient live or die, he lingers ill for
months or years.  Death is a common end. . . .  Recovery is complete, or
incomplete.  When the recovery tends to be complete, a peculiar weakness of
the legs is left long after all other tokens of the disease have passed away.
. . ."

Hope this helps. . . .

Holly Martz