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Wow, I wasn't expecting so many replies! And all of them were so well
thought out. Of course we all want accurate information, but many of the
responses I received raised very interesting questions in themselves. This
is a tough subject - the immune system, autoimmunity, sensitivity vs.
allergy vs. intolerance. Due to length restrictions, I "combined" similar
responses and pasted in only one person's reply - not because I didn't find
everyone's reply valuable.

Briefly, these were my original 4 questions:

1.  Is there evidence of liver involvement/association in people who have
non celiac gluten sensitivity?
2.  Is non celiac gluten sensitivity different than an allergy that would
show up on an allergy skin prick test for wheat? (I'm assuming that there is
still no allergy test for gluten by itself)
3.  What is the significance of a delayed reaction to a skin prick test -
say, 6 to 8 hours later, large, raised wheals appear?
4. What impact does a food sensitivity have on the immune system?

These are the replies...Thanks to all of you who contributed. I have an
appt. w/an immunologist on Monday who is evaluating me for a depressed
immune system. This information should be quite helpful to him...and to me
in my future research.
_____
Dr. Scott Lewey in Colorado understands the significance of non celiac
gluten senesitivity. I think this will get more and more attention as our
numbers grow. Here is his Blog: http://thefooddoc.blogspot.com/
_____
In response to your question #2. I was negative for a wheat allery on
testing (IgE testing) and positive on genetic testing for gluten
sensitivity. The latter is a IgG sensitivity as far as I know. It's
considered an intolerance, rather than an allergy. My symptoms are, however,
different from yours. Much more of a delayed response with only mimimal
possible symptoms for the first 1 to 2 days. Too bad that genetic testing,
although reasonable in this day and age, is not cheap. Several years ago
when I had it done with Dr. Fine it was around $180. If you do go that
route, make sure you have it done in a lab where they test for the other HLA
DQ genes besides the celliac ones of HLA DQ 2 and 8.
_____
Myself, I like the research Dr. Fasano is doing, which indicates that gluten
causes the gut to become porous (due to zonulin production). That triggers
all kinds of autoimmune problems. Zonulin causes
autoimmune problems when injected into rats, even *without* gluten. And no
"villi damage" is required for this reaction to take place.

Also, the reaction to transglutamase, not the reaction to gliadin, is one
that triggers a lot of organ damage. Your body happens to contain a lot of
transglutamase, which is also added to bread, and somehow while reacting to
gliadin your body learns to attack transglutamase.

So I think that with wheat, there are a series of reactions that can happen.
Celiac is one of them. But the other reactions can be just as fatal, just as
damaging to the organ systems. It might take another 20 years of research to
sort it all out, but who wants to be sick for another 20 years?
_____
PS - I forgot to say that if I were you I would get the gene test thru
Enterolab.com <http://enterolab.com/>
I have found in my research of the past years that if you have double DQ1
genes, you are in for a bad time health wise if you are eating gluten
_____
Wow. I haven't done the biopsy celiac testing, (my doc recommended it but
I'm chicken)  but my blood test was also negative. I think I am more
allergic than celiac since there is no one else in my family who is celiac
and there are tons of allergies. I was fascinated by your description of
your symptoms. I get rashes, mild nausea and lower and upper right quadrant
pains when I eat gluten, no diarrhea. I also notice I am very agitated when
I eat wheat. My husband jokes that it is worth it to him to make sure I
don't eat wheat! My doctor was very concerned about my liver enzymes when I
was still eating wheat and they have since become normal since the I started
the gluten free
diet and the doc has no idea why. I'll mention your discovery about the link
to him next visit and see what he says--probably - it can't be. Their usual
reply to me. I've pretty much discovered the gluten free diet on my own
since the doctors couldn't figure it out.
_____
One question I have is an analogy, if you can bear with me.  I have
rheumatoid arthritis, which my docs now think I had even as a child. While
my radiographic findings are specific for RA-pattern joint
destruction,  I am "seronegative"  for the specific RA antibodies, which
apparently occurs in about 40% of  adults who've had RA since childhood.
They lose the antibodies.  ????  I've wondered whether something like that
could happen with celiac disease.  ?????  Of course, that doesn't explain
negative biopsies -- but the biopsy biz as you know is fraught with
"issues."
_____
I can't address all your points, but I can tell you that gluten sensitivity
is different than an allergy to gluten or wheat.   Gluten sensitivity
triggers the production of IgA or IgG  and an "allergy" triggers IgE
production.  According to the Enterolab testing, I have no celiac genes
(just gluten sensitivity) but my stool test revealed a small positive IgA
reaction to gluten even though I have been gluten free for 4 years (to the
best of my knowledge).  I am asymptomatic and did the tests along with my
husband because our daughter is dx with celiac disease.  I do not show a
wheat allergy
when given a skin test. The Enterolab results also showed that I have a
small positive IgA reaction to transglutamase, which indicates an autoimmune
reaction similar to what occurs for people with celiac disease.  I don't
know if that means I am one of the people without celiac disease genes who
has celiac or whether this happens sometimes for people with gluten
sensitivity.  I wish there were more information out there about gluten
sensitivity so that I could understand more about it's ramifications on
health.
_____
NEITHER CELIAC OR GLUTEN SENSITIVITY HAVE MUCH TO DO WITH ALLERGIES. FORGET
ALLERGIES OR ALLERGY TESTING. THEY BOTH MAY BE THE SAME THING BUT I BELIEVE
THAT GLUTEN SENSITIVITY IS THE PRIMARY DISEASE AND CELIAC IS JUST ONE OF THE

KINDS OF DAMAGE THAT GLUTEN CAN DO TO THE BODY. (THE SMALL INSTESTINE
DESTRUCTION AND EVIDENCE OF IT WHICH IS HOW THEY DIAGNOSE CELIAC). YOU CAN
GET A GLUTEN SENSITIVITY TEST AT ENTEROLAB WHICH IS ALL YOU NEED TO FIND OUT
IF YOU HAVE IGA ANTIBODIES ATTACKING YOUR BODY. THAT IS ALL YOU NEED. IF
THEY DON'T FIND ANTIBODIES YOU DON'T HAVE CELIAC OR GLUTEN SENSITIVITY
EITHER ONE. IF THEY DO, STOP EATING GLUTEN FOREVER AND ASSUME YOU HAVE THE
DISEASE WHATEVER THEY WANT TO CALL IT. LET THEM FIGHT OVER WHAT THEY CALL IT
AND YOU CALL IT WHAT YOU WANT. BOTH OF THEM WILL KILL YOU AT THE SAME PACE
AND MAYBE IN THE SAME WAY. hOWEVER, THAT LAB WILL TELL YOU WHICH GENE YOU
HAVE OR WHETHER YOU HAVE EITHER ONE.
_____
Hope this summary helps some of you with the same questions I have... ~~Ayn
in Alabama

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