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Sorry for the delay summarizing, but I wanted to wait until we had another
visit with the doctor so I could talk to her about some of the suggestions
from listmembers.  She was even gracious enough to allow me to email her with
my questions before our appointment!

Several members suggested lactose intolerance or bacterial overgrowth; my son
was tested for both of these and the test results were negative.  We have
been very careful to avoid gluten ingestion by keeping all gluten products
out of the house.  It was sometimes overwhelming task at first, but as I
adapted to cooking without wheat flour we really didn't miss too much.  I was
never successful baking a good cinnamon roll or bread, but otherwise we ate
well.  The hardest part was reading labels and trying to remember all the
"unsafe" additives.  Therefore when he became sick again this fall we were
mystified.

His first biopsies were taken while he was consuming gluten products and had
been doing so all his life, the second set were taken when he had been gluten
free for almost a year.  The results were the same for both sets of biopsies,
no damaged villi, no intraepithelial lymphocytes, nothing but some
inflammation and eosinophils in the duodenum.  The doctor is very thorough
and took 4 biopsies from different locations each time and one to freeze for
later reference.  She also photographed all up and down.  If anyone is
interested I have the names of the labs where the blood work and biopsies
were sent.

Several people mentioned two rare diseases, both have some similar symptoms
to Celiac Disease.  Remember they are classified as rare disorders, defined
as fewer than 200,000 individuals affected in the US.  If you have any
questions go to these sights for more information on each disease.  The first
was mastocytosis http://www.sepa.tudelft.nl/webstaf/ivob/mastofaq.htm; one of
the "cautions" for individuals with mastocytosis is general anesthetic that
can cause anaphylactic shock, this caught my attention since my son had
an"unexplained" reaction (stopped breathing, heart..  all that basic I can't
believe I'm watching this happen sort of thing) while we were with him in the
recovery room after his brain abscess surgery.  The doctor was on top of this
and checked for mast cells during both scopes and found none.  The second
rare disorder is eosinophilic gastroenteritis which sounded very similar to
my son's symptoms, http://www.icondata.com/health/pedbase/files/EOSINOPH.HTM
.  However with eosinophilic gastroenteritis a person has eosinophils all
through their digestive system and my son only has the eosinophils in his
duodenum.  The treatment for eosinophilic gastroenteritis is prednisone for
inflammation and antihistamines; my son had a short course of prednisone and
then started on periactin and pepcid and has no digestive distress since last
fall.  The bad news is that eosinophils are also present in the damaged
mucosa of Celiacs....

Our gastroenterologist feels with both sets of biopsies normal and a normal
IgA that my son doesn't have CD.  He certainly has allergies, and
wheat/gluten may be one of those allergies.  So for now we are going to
continue the drugs and continue the gluten free diet then this summer
discontinue the drugs and try an elimination diet.  He is 12.5 and I don't
know if it's his age or just that he's well again, but between 12/28/98 and
4/12/99 he's grown 3" and gained 23 pounds.

Thank you for your time and interest in my son's mysterious condition.

PS Betty Hagman's Buttermilk Waffles in her first cookbook are wonderful; we
add a little cinnamon and are careful not to overmix.  They are light and
freeze great; we prefer them to Eggo's any day.  I will post the other family
favorites as soon as I can.

Best Regards
karenj
[log in to unmask]

Following are the replies I received from members.

........................

This may be too simple, but just in case you've overlooked it:  Have you
considered lactose intolerance?  It often goes along with the pseudo celiac
illness you describe, and can be even much worse than the gluten reaction, as
it is with me.

........................

Keeping a food diary is a good idea, to identify what was consumed in
relation to the symptoms.  Good luck!  Please let me know if you learn any
more about your son's condition, since it looks like we're in the same boat.
I really feel for your son.  I have had normal biopsies, normal bloodwork
(though this was done after I was already gf) and continue to suffer from
chronic diarrhea and weight loss.  In the past few weeks I have discovered
that taking milk out of diet cleared up alot of the diarrhea.  And when I ate
soy it came back.  So that is out now too.  I too, don't know what I am sick
with.  It is very frustrating.

........................

Funnily enough, I had heard how mony people on the list are unable to cope
with milk (all forms not just lactose) and soy.  But I was so busy trying to
get better, and gain weight that I didn't want to take anything more out of
my diet than necessary.  It seems to help.  I am down to diarrhea two or
three days a week instead of everyday.  I figure I haven't found all the
triggers yet.

........................

I hope this helps. It's not very scientific but .

We know just what you're going through.  We've a 3.5 year old son, and this
sounds very familiar.  All his tests were normal, but had all the symptoms.
After two periods of 6 months he had the biopsies etc and nothing showed.  We
put him on a strict GF diet, and he transformed.  He grew a little ( the
first time in 2 years), and has more energy, in better form, and no longer
getts sick a few times a day.  Our paed.  gastro also is reluctant to
diagnose celiac, but we treat our son as if he were diagnosed.  We don't know
what we will explain to him when he gets older, as to why he is on a
specialised diet when he has been told there is no diagnosable reason for
this.  One item mentioned recently is transient gluten intolerance.  Besides
the name I've have a biopsy-diagnosed two year old and am going through
diagnostic turmoil with my husband.  Similar to your son -- looks like, seems
like, some indications but not enough for celiac.

........................

I don't know if this gives you anymore insight.  One resource I read said the
IgG elevation shows hidden food allergies if everything else is negative.
The Pepcid is an antihistamine so it may help your son if its allergy related
and it sounds like it might be if there were eosinophils found Its so
difficult when its your child.  It sounds as though you have some excellent
doctors attending to him.  If you have any other questions that I could help
with, let me know.It sounds like your son is high in IgG antibodies as well
as the endomysial.  My middle son had high IgG antibodies and a negative
biopsy with some focalized chronic duodenitis.  I must tell you that he
reacts to shrimp and throws up as well as has diarrhea from eating it.  The
fact that your son has elevated endomysial antibodies is more indicative of
Celiac but perhaps he has not developed a full blown case of it.  The other
thing could be that he is like my son, only having some food intolerances.  I
believe these are called IgM mediated food intolerances, they are really not
as serious as IgE mediated allergies which can be life threatening.

........................

Hopefully, as your son is followed by your excellent doctor, it can be
determined why is getting diarrhea in spite of being on the gluten free diet.
I'm thinking he might have these other food intolerances and you might have
to put him on an elimination diet to determine what is causing the diarrhea.

........................

Another curious and interesting intestinal disease in which allergic
reactions to food may be involved is 'eosinophilic gastroenteritis' (in
italics).  In this disease, the stomach and intestinal lining cells become
crowded by eosinophiles, the naturally occurring blood cells that are
involved in allergic reactions.  In addition to producing uncomfortable
intestinal symptoms, this disorder causes the lining cells of the bowel to
become "leaky", with the result that important protein constituents of the
blood seep into the intestine from which they are passed out in the stool and
so are lost to the individual.  The level of blood proteins falls and
swellings of the body occur - "edema" - especially in the legs.  People so
affected may have as increased number of eosinophiles in their blood as well,
but not always.  A few get better when milk, eggs, wheat, soy protein, or
steak are removed from their diets, but others may require medicines as
well."