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This is a follow-up to my earlier message about CF and CD...
 
I have gotten some responses and questions.  Let me clarify my daughter's
situation.  She was diagnosed in 6/95 with Cystic Fibrosis via sweat
test, then confirmed with genetic testing specifying which CF gene she
carries.  So, yes, CF has been confirmed.  She was diagnosed in 2/96 with
CD via antibody blood tests, and confirmed with small bowel biopsy.  In
10/95 she was hospitalized with severe malnutrition.  After pumping up
her nutrition level, she got a central line IV for TPN night time
feedings.  She was still eating orally during the day - just not
consuming enough calories.  In 12/95, we went back in the hospital to get
a feeding tube.  Over the course of the next month, we weaned from
central line to feeding tube with Tolerex at night.  All during this time
she was eating orally (and unfortunately getting gluten since we hadn't
had the CD diagnosis).  From 10/95 to 1/96 she gained 6 lbs.  From 1/96
to 3/96 she gained another 3 lbs.  Since 3/96 she has maintained at 24.5
lbs.  In 10/95 we also started her on vitamin supplements (vit. K, vit.
E, poly-vi-sol (which has been changed to Centrum liquid), fer-in-sol).
 We have since added a calcium supplement (antacid Titralac).  She also
takes Zantac to reduce the acidity in her stomach/upper intestines to
help the CF enzymes work better.  I believe she is on a gluten-free diet.
 Her doctor's experience is that medicines/vitamins have not been a
problem (GF or not) in other patients.  I also saw something on the list
that concurred with his experience.  I have seen comments about
gluten-free shampoo.  I use Johnson's baby shampoo, and am not sure if it
is GF.  Is that really a problem?  Do I need GF shampoo and bubble bath?
 
I received a comment about removing dairy products.  Her doctor had a
stool test done that didn't indicate lactose intolerance, so they haven't
been removed.  Although she doesn't eat much dairy products (some yogurt
or milk is about it).  We are planning to do some more blood tests
(checking vitamin and mineral levels, checking for hypothyroidism,
checking serum-ferritin levels).  Sorry for the long dissertation, but I
thought something in here might spark some other thoughts.  Any comments
or suggestions would be appreciated.  Thanks...
 
Beth Turvy in Georgia
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