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Hi,

I still haven't sent my summary of the last email question that I asked, but
it is almost ready.

Now I have a new one already - the history is below for people who have time
to comment, but my main question is this:

Do I need to gluten challenge my son in order to get a confirmed diagnosis?
We are going to the states (from South America) for Xmas and I want to be
sure about a celiac diagnosis. I am going to try to call the ped. GI that I
am going to take him to see, but am not sure that I will get to speak with
him personally before we get there and have his appt.

 Is the fact that he tested negative for a wheat allergy (prick test), yet
when I gave him wheat pasta his stomach immediately bloated up, he had
horrible (you know the smell) gas as well as diarrhea, and when he has an
allergy (such as fish or soy) his bottom blisters up, but with this last
challenge, there were no signs of histamine type reactions (confirming the
prick test) - is all of that enough?  As soon as I took him off of all wheat
based products - he immediately became another kid (although I am not sure
if he is totally GF, since I suspected allergy and not Celiac  - he eats two
cereals that have malt and emulsifier and vanilla that might have GF and he
does still have loose stools, but not like before). Could it work that way,
that since he only gets smalls amounts of gluten from those sources that his
symptoms are much less than they are with full on wheat or oats?

Thanks for any comments.

Here's the long story:

My son started losing weight and having diarrhea that the docs finally
admitted wasn't normal for a breastfed baby when they found blood in his
stools when he was 5 months old. He had a colonoscopy to determine whether
or not it was allergic or ulcerative colitis or something else. The
diagnosis was allergic colitis. The ped. GI doc is a putz who immediately
told me to stop nursing, and put him on formula (a baby with allergic
colitis?!) but instead I ate potatoes and rice for 3 weeks and he finally
got better. This is around the same time that I was losing weight like crazy
as  my Celiac symptoms got very bad (not diagnosed until 10 months later).
The diet did me well too, but we just didn't know it then. Anyway, we
realized that soy was a major problem, as well as milk. He got better in
spurts, but never really met his growth curve again, and always had what I
thought were too loose stools, but the docs told me that some kids just have
loose stools.  There were intermittent bouts of blood, and I was constantly
changing both of our diets eliminating what I thought could be culprits, but
giving up when nothing was ever consistent.  Finally I stopped nursing so
that we could control that extra variable for both of our healths, and that
is when we realized that he was allergic all along to Nutramigen, the
formula we had supplemented with (b/c he had soo much more of it when I
stopped nursing, and he got sicker and sicker).  We found out that it has
soy, although NO ONE is supposed to react to it. The docs were shocked.
Then we had a better base line and I took out eggs and wheat and he did
marvelously. He can't tolerate any fruits except bananas either.

After my diagnosis, I took him off of anything that could even be partially
suspicious (corn, wheat, fruits, soy, etc, etc.) and he almost got
constipated. He was so shocked at the fact that he could feel himself having
a BM! poor guy. But that diet was soo hard to keep up that we finally let
him eat these two cereals that have emulsifiers, vanilla, and malt. He has
only GF/CF rice milk, so we are strict about milk, soy, fruits, eggs, and
wheat, oats, but not about gluten.  He is soo much better, and finally has
almost caught up with his growth curve, BUT I am calling the cereal
companies today to see if they are GF or not. I am suspecting not.

One is Nestle baby rice cereal.
The other is a company called McDougals Arroz Crocante - I don't know if
McDougals has a  North American equivalent - Crispy Rice - or not.

Thanks for all suggestions and comments!

Emily

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