<<Disclaimer: Verify this information before applying it to your situation.>>
 
Some questions were posted on the list concerning refractory sprue.
My 7 year old daughter, Katy, developed this condition in December,
1993.  Undiscovered gluten in her diet was unlikely, since she had
nothing by mouth for the better part of a year.  Her sole diet was
Peptamen feedings by tube, except that she was allowed to chew one
piece of gum (Wrigley's Extra) per day after awhile.  She was treated
with cyclosporine, which had to be given IV for 3 months because her
intestines would not absorb the med orally.  Over a two year period,
she gradually expanded her diet, discontinued the tube feeding, and
now appears to be doing well on a gf, rice-free diet.  Cyclosporine
was discontinued 1/18/96, follow up biopsies scheduled for June.  She
seems to be doing very well.
 
The condition is thought to be extremely rare, although we all know
there are situations where villi damage exists but symptoms don't
present.
 
If anyone is interested in a more complete bio or would like to
discuss this, I'd be happy to.  E-mail <[log in to unmask]>
Andy Thomson