<<Disclaimer: Verify this information before applying it to your situation.>>

--- My family has several combinations of the celiac gene and gluten
sensitivity genes. It really doesn't matter what combo you have. If you have
at least one gluten sensitivity gene, problems can arise when/if you're ever
"triggered."   Once you're triggered, the damage begins to happen. My
daughter who has 2 gluten sensitive genes and no celiac gene has as much
trouble if not more than family members who actually have a celiac gene.
Another family member has only 1 gs gene and has more problems than one who
has a celiac gene. You can test negative for celiac genes genetically and by
the blood testing panel, but you can still be gluten sensitive and continue
to build up damage - seizures, migraines, arthritis, neuropathies, gut
pains, gas, bloating, diarrhea and still be negative for celiac. I say -
"Who cares whether you test positive for or have full blown celiac or not."
If you're gluten sensitive and having any symptoms, the solution is to GET
OFF THE POISON THAT;S DOING DAMAGE TO YOUR BODY. I have had so much trouble
convincing doctors that gluten sensitivity is as dangerous as celiac. ONE in
133 has celiac and ONE in FOUR has gluten sensitivity. The sad thing is that
only about 1% actually know what the culprit is.  For me, it's not only
wheat, oats, barley and rye, but also corn, soy, dairy, sugar, artificial
sweeteners and flavorings, caffeine, most fruits, most nuts, processed
foods, and even my own delicious gf breads.  I eat half a biscuit maybe once
a week. So I am not only gluten sensitive but have so many other autoimmune
disorders and food intolerances. If gluten is a problem, not ridding
yourself from it will only lead to other problems later in life. I know -
after 40 years of going undiagnosed. I wish I had known at 18 what I know
now at 61. And that's my story - there are many more out there just like me
though. So, to answer your question - damage doesn't have to "turn into CD"
to cause problems.  Gluten does enough on its own.

--- My doctor told me that 2 - 3% of diagnosed celiacs (gold standard
testing with positive blood test and biopsy) do NOT have the genes. I have
seen that info elsewhere, but not often. Mostly it's on GF forums like this
thread here: http://www.celiac.com/gluten-free/index.php?showtopic=47246
But, most literature or celiac websites does not mention this info. Your
situation of no genes and gluten intolerance is mentioned in the article at
this link.
http://ezinearticles.com/?Celiac-Genetic-Tests-Are-Not-All-Equal-and-Some-DQ
2-Negatives-May-Not-Be-Completely-Negative
<http://ezinearticles.com/?Celiac-Genetic-Tests-Are-Not-All-Equal-and-Some-D
Q2-Negatives-May-Not-Be-Completely-Negative&id=965347> &id=965347 My doctor
believed that not all the genes related to celiac have been identified to
date. And, it's very interesting that the one person mentioned in the forum
thread says that Europe recognizes more genes than the U.S.

 

--- As you may know, only limited knowledge is available on the genes which
cause celiac disease,

http://www.genetic-future.com/2008/03/new-genes-for-celiac-disease.html

So testing negative for the genes they currently test for may simply mean
that you have a celiac causing gene which has not been determined at the
present time.

That stuff gets WAY too complicated for me however! You may wish to do more
research on medscape about recent celiac gene advances.

 

--- If you don't have the celiac gene, that statement does not apply to you.
Check with the University of Maryland's Celiac Disease Center headed by Dr.
Fasano. You can Google the site. I tested negative on the blood test but I
was having severe stomach distress from eating gluten. Also mental fog and
other symptoms. I avoided all gluten for about 10 months and went back to
eating it. Lightly at first, then every day. And the symptoms returned. I
then had gene testing--paying for it out of pocket. The test returned
negative. 
I continue to avoid gluten, but I am not fanatic about possible
cross-contamination or chance exposure. Dr. Fasano's nurse helped me when I
called their office for info.
I have since had food allergy tests and found a whole lot of things I'm
allergic to--including all grains and all dairy and most nuts. My issues
seemed to stem from leaky gut, which I am now addressing with l-glutamine
and probiotics. 
It's been a long journey--three years so far, but I am seeing light at the
end of the tunnel. Good luck! There are lots of us out there.

 

--- Please check out www.theglutensyndrome.net
<http://www.theglutensyndrome.net/> 

 There is another theory, or rather a wider perspective on the gluten
syndrome.  Both the celiac dx (villi damage only) theory and the wider
perspective are discussed in detail on that site, particularly on the home
page and the Testing and Medical Diagrams pages.  

 Here are 2 published articles from the Medical Diagrams page and there are
more.  (Beth, here:  wasn't really sure how to attach links for these
articles; they were in pdf form)

 Bottom line, in the wider perspective Ken Fine of Enterolab thinks more
genes are involved, DQ1,2,3 and 8.  

 Dr. Vojdani believes the genes are not needed at all for some very common
pathways of reactions to occur. 

 Unfortunately you probably still do not know your HLA DQ.  Most labs only
report positive/negative for DQ 2 or 8.  Enterolab is the one that reports
which DQ the patient possesses.

 In the wider perspective the gluten intolerance reaction is not just a
precursor of villi damage.  It is just as serious and autoimmune a reaction
as celiac disease in many cases, but that reaction doesn't damage villi.  It
causes damage in many other possible places in the body, like organs, brain
and neurological tissue, etc.   

 

 


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