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Subject:
From:
Cassandra Lewis <[log in to unmask]>
Date:
Thu, 19 Feb 1998 13:37:07 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

This is my first post to the list.  Thank you all for being there.

I went gluten free (except for oats) by accident 9 months ago when my
diabetic niece with a wheat "allergy" moved in with us.  I had not heard of
gluten intolerance.  6 weeks later my MD had me take the Intestinal
Permeability Test which showed severe malabsorption - Mannitol recovery rate
of 1(normal is 5-25).  4 months later he tested my IgG allergies.  I was
positive for rye but negative for wheat and barley.  He put me on a
rotational diet including barley, oats and a little sprouted wheat.
Symptoms I had been suffering from for years started coming back. 2nd
Intestinal Permeability test done Dec.17th showed Mannitol of 8(in normal
range) Lactulose still elevated at 1.2.

My dilemma is that for 9 months I have not eaten rye which is the grain I
really react to.  During that time I only ate a small amount of sprouted
wheat and some barley and oats which I stopped eating 2 months ago.  I have
been strictly gluten free.  When I finally got to a GI physician my serology
tests came back negative.  My doctor now says that he doesn't think I have
sprue although I have shown very classic symptoms which have been severe at
times(lowest weight was 89 lbs. and I'm 5'5 1/2" tall.)  He has scheduled an
endoscopy with biopsy and a colonoscopy.  He said he is not willing at this
time to discuss a second biopsy, after a challenge, if this biopsy is
negative.  I quickly started a gluten challenge but do not think 7 days is
enough time to show anything.

Is there anybody out there who reacts more to rye than to wheat?  Does
anybody know if there is an antisecalin(rye) panel I could take since I am
IgG positive to rye not wheat?

Does anybody know what the correlation between stool IgA level and blood IgA
level is?  I was on lots of Quercetin which supposedly increases your IgA
when my stool showed a very low normal IgA of 46(reference range is
44-183)(December 17,1997).  I stopped the Quercetin and 2 months later(2
weeks ago) my serology tests were negative.  Could it be a false negative
due to a low IgA level?

My original physician also had me on Intestamine(L-Glutamine 5000 mg, N-
Acetyl-D-Glucosamine 250 mg, etc.) to heal my gut so I really don't think
anything will show up on my biopsy right now.  But my GI doctor says if I
have it it will show up now.  I REALLY want an official diagnosis for family
reasons!!!  What do I do?

Cassandra
Broadway, Virginia

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