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I am submitting this on behalf of a friend of mine. If you can help
with this problem, please write to me, Marty Weeks,
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Our friend's 10 year old daughter was diagnosed with Celiac Sprue in
September 1993 with a biopsy.  September 93 weight 41 pounds, height
47 =BC inches.  She has since had two more biopsies that are normal.
She has not responded well.  Poor weight gain, (eats several times a
day). Chest pain, headaches, stomach pain, irritability, very weak
and gets tired easily, and she has a pimple like rash all over her
body.

She is on a strict gluten-free diet.  Three antigliadin antibodies
were negative.

We have seen or talked on the phone to 3 pediatric gastroenterologists
along with two adult gastroenteroligsts.  We have seen a neurologist,
pulmonologist, and a cardiologist.  All of them have no idea why she
is not gaining or maintaining her weight.  They all have looked at
malabsorption theory.

She has been put on TPN for three months during which she gained 18
pounds.  Upon taking her off of TPN she lost 11 of those pounds.  All
of her symptoms went away while on TPN.  She was still on the gluten
free diet.

She is now on a nasal gastric tube which has only been in 1 month
since all her symptoms returned.  We have also seen a psychologist and
by no means is she anorexic or bulimic.

She has had several tests run which came up negative: upper GI, lower
GI, Colonoscopy, thyroid, chrons, lupus, pancreas, ultrasound, protein
levels, and caloric intake.  She does have a positive ANA -- 1:40 -
1:160 speckled.  A positive anti-endomysial 1:10 and her Igg - Iga ,
Igm are on the low end (731-95-62).  Her white count has run low 3.5
to 12.2 mainly staying around the 3.5 to 6.4 range.

She now weighs 60 pounds and is 55 inches tall.  She continues to grow
taller but her weight does not maintain .

She has taken several drugs to try and improve on weight and pain.
Ibuprofen, colace (to keep bowels moving), phenergan, periactin,
creon, prednisone, gastrocrom, propulsid, calcium, zinc, levsin,
ilosore, periactin, intal inhaler, proventil, ensure, carnation
instant breakfast.  All of these with no success over a long period of
time.

We are asking for anybody that may have had the same or similar
problems to please respond.  If you have had a doctor give you an
answer to why this would be happening we would like to know about it.
Any suggestions would be most helpful in helping our daughter get an
answer to her situation.