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I am feeling extremely frustrated having just come back from an appointment
for my 16 year old son with a Pediatric Gastroenterologist.

I have biopsy diagnosed celiac (my blood tests were negative) , my sister
was diagnosed at birth.  My 16-year-old son has had chronic diarrhea since
birth.  He was diagnosed lactose intolerant at 6 months.  We have seen
numerous doctors who said he had juvenile diarrhea and it would clear up, as
he got older.  It hasn't!  He is overweight by 50 pounds, has a lot of extra
fat around his breasts and stomach, diarrhea 3 or 4 times a day with pain,
painful gut and a lot of wind.  He uses Immodium as he needs it to be able
to function and go out.  I have never put him on a gluten free diet, mostly
due to his request not to and the fact that I realize if he is to be
diagnosed he needs to be eating wheat.  He actually chooses to eat a lot of
wheat containing foods as his staple diet.

He has had the blood tests done and all three of the antibody tests came
back as normal.  The gastroenterologist told us today there is no way he can
have celiac.   And that he either has a sucrose-maltose deficiency for which
we are supposed to make him eat large amounts of fruit and have three stool
samples done for stool ph and reducing substances.  If that comes back
normal then he must have Irritable Bowel Disease.  This doctor said he sees
a lot of irritable bowel and its VERY common and there really is no
treatment and no definite diagnosis.  But he can give him a mild
anti-depressant that helps with the gut motility.  One thing that confused
me was this doctor said that pysillium (used as a bulking agent for
irritable bowel) is derived from wheat or barley????  I was under the
impression it was wheat free as my celiac doctor had said it was safe to use
when my gut was bad.

Maybe its just because I have celiac myself and I was misdiagnosed for 20
years of my life - and also diagnosed with irritable bowel in the past that
I am feeling mixed emotions here.  I really want to rule out completely any
possibility of celiac as it seems to me my son has classic celiac symptoms
and it would be so unfair to him to put him through what I went through with
a misdiagnosis.  I ended up with a cancerous large intestine polyp and the
celiac was finally found at the same time.  I am lucky I am alive today -
but would not be if I had not finally found a great gastro doctor who cared
enough to look into every possibility.  Even with the strong family history
of celiac, it still took 20 years to diagnose me!!

Please could I have some informed feedback here - what I am seeking is
papers, links, forums and other information that would help me decide
whether to go back to this doctor armed with medical information to show
that he needs to look further for a definite diagnosis.  Or if anyone has
information confirming that normal blood tests definitely rule out celiac.
And then I guess I have to start researching irritable bowel.  I cannot see
this being a sucrose-maltose enzyme problem as my son does not eat fruits
and still has diarrhea.  But we will do the testing for that as requested.

Does anyone know of a gastroenterologist specializing in celiac disease in
the Bay Area/Pleasanton area??  I may have to insist we see a true
specialist.

Please even though I enjoy reading other peoples stories and histories,
right now I need concrete evidence and medical opinions, papers etc. so I
can go in armed with all the right information to hopefully get my son onto
a healing regime.  We all know how horrible it is to have chronic diarrhea
and the exhaustion, hunger and irritability that go with it!!

Thanks in advance.

Chris Kranzler