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I've got encouraging new for anyone out there who's suffering from short
stature due to Celiac.

Back in April, I posted a question on the ListServ.  Our son Alex, who was
then 14 years old, had been diagnosed with Celiac Disease late in 2000.  His
growth rate had really dropped in the year or two before his diagnosis, and
at 4'10" he was quite a bit shorter than all the other boys in his grade at
school.  As a matter of fact, it was his height that had led to his Celiac
diagnosis.  We'd brought him to see a "growth doctor" ( pediatric
endocrinologist who specializes in growth problems ) and that doctor
suggested we have Alex tested for Celiac to see if that might be a cause of
his growth failure.  The endoscopy confirmed CD, and Alex started on a
gluten-free diet in December of 2000.

By April, we'd hoped to see better growth progress, but it didn't seem to be
happening.  The "growth" MD ordered up growth hormone testing, and those
results turned up a severe hormone deficiency.  The growth doctor recommended
we start treating Alex with daily hormone injections, cautioning us that we
were running out of time, as Alex had already started puberty and didn't have
too long before he would stop growing completely.  My wife and I were really
uncertain what to do.  We wanted Alex to reach his full height potential, but
were reluctant to start the regimen of hormone injections unless we were
convinced that they were necessary, that Alex would grow faster with the
hormones than without them and that the hormone injections would be totally
safe.  We posted a query on the ListServ asking to hear from anyone who had
related any experience.  We received many responses, with a variety of
experiences and recommendations  offered to us.  We were still undecided what
to do.  We then consulted with another endocrinologist at Columbia
Presbyterian Medical Center, and took Alex to see Dr. Alessio Fasano at the
University of Maryland Celiac Center.  Both of those doctors recommended that
we hold off on the hormone injections, and see what would happen over the
next few months.  Dr. Fasano felt strongly that it was unlikely that the
growth failure was not connected to the CD, and that with more time on a
completely gf diet, the growth would improve.  We then went back to the
original growth doctor and resisted his urgings to start treatment.  It was
tough to hold him off, but by this time, we felt we knew more about Celiac
than he did, even if he was the one who had recommended Alex to be tested for
CD.

Scroll forward to August.  Another round of growth hormone testing.  Results
again showed a deficiency, but not as bad as the April tests.  Another visit
to the growth doctor.  By September, Alex had reached 5'0."  His growth
velocity is now up to 3 inches per year, exactly where it should be at his
age.  Everyone agreed that we had done the right thing to hold off on hormone
injections, and that Alex is doing fine on his own.  Now we're just waiting
for that "catchup period" the doctors talk about, where he can still reach
his genetic height potential despite the slowdown caused by two years of
untreated Celiac .

Thanks ListServ members for all the support and encouragement. And a special
thanks to Alessio!

If more people and more doctors are educated about Celiac, more kids like
Alex can be diagnosed earlier, and treated before they suffer permanent
health problems.  That what we've all got to work for!

Cliff and Arlene Blaker
Tenafly, NJ