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Hello all:

This is my first posting to the list.  I have been reading all of your
thoughts daily, and they have been of great help to me.  I would like to
hear what you think about our situation.

My 4 1/2 year old son has had a distended abdomen his entire life.  He
was 9 pounds at birth, and we attributed his "large tummy" to his large
size.  As he grew, we questioned his pediatrician at each visit
regarding the size of his stomach, but were always told that it was just
"toddler tummy" and he would outgrow it.  However, now that he is older,
with his pencil-thin arms and legs, and bulging abdomen, it has become
obvious this is something he will not "outgrow".  In addition to his
bloated belly, he also suffers from tremendous amounts of gas each time
he visits the bathroom. He also has cramps in his feet several times a
week, seems irritable, and is frequently lethargic, complaining that he
is tired.  He also complains of a stomach ache immediately following
each meal.

Additional family history - my son's grandfather has scleroderma (an
autoimmune disease), and I was diagnosed with Graves disease approx. 15
years ago, although the last two times my thyroid has been checked, it
came back as "normal".  I also had stomach distress when I was younger,
going through multiple tests suspecting lactose intolerance and
irritable bowel syndrome.  These problems have since subsided, and I
suffer no symptoms at this time.

Last fall, I finally took my son in to a different doctor, who did an
xray and said his stomach was full of gas.  Referred us to a pediatric
gastro, who sent us in for the lactose hydrogen breath test - negative.
Also had blood tests done for celiac which were all negative.  He
underwent upper endoscopy with biopsies in December for further
evaluation of abdominal distention.  Endoscopy was "grossly normal".
Biopsies from his stomach were normal.  There were some chronic
inflammatory changes in his duodenum and some blunting of the villi.  As
the doctor said, "with celiac disease, we see severe blunting of the
duodenal villi."

The doctor also tested him for autoimmune enteropathy which came back
negative.  The doctor said that a motility disorder can also present in
a similiar fashion as celiac disease.  She suggested that my son try out
the diet to see if he responded favorably to it.  He has been gf for 8
weeks, and the gas has lessened, and his belly has gone down some.  I am
still holding out hope, however, that it is not celiac.  The one reason
I say this is that we have pictures of him at 2 months old with a hugely
distended belly.  This was well before gluten was introduced into his
system, so could it be something else?  I know the formula he was on was
gf, but now I am wondering about an allergy to casin?  I know that was
in the formula, and he has continued to drink milk and dairy products.
He suffers no "reactions" as so many of you do, although we have been
extremely careful since going gf, and I feel confident that he has not
received any gluten during the past 8 weeks.  We haven't gone out to eat
once.

It's so difficult to follow this diet every day not knowing if it is
indeed necessary.  I have had all of my son's records transferred to the
Mayo Clinic and have talked to a doctor there who is going to give us a
second opionion.  We were scheduled to see his regular Gastro today to
discuss any improvements because of the diet, but he came down with the
stomach flu two days ago, so we had to postpone the appt.

Hearing all of this background, and knowing he has had the bloated belly
since before exposure to gluten, do you think he is celiac?  The not
knowing is unbearable.

Thanks so much for your time and thoughts.

Sheryl