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Greetings group:

Thank you to everyone who emailed about my post on the above subject.  Many people wrote about non-celiac gluten sensitivity. Some said that it can be as bad or worse than the celiac response to gluten.  Many people said that there are genes for gluten sensitivity that are tested for by Dr. Fine's Enterolab.  Also a couple people wrote that that there are still undiscovered genes for celiac since not all people with the D2/D8 have celiac.  Of course, I could also be part of the 5% with celiac that don't have the gene; although one person said they thought the real number was more like 1%.  A few people wrote that they or a relative was part of that 5% that didn't have the gene. Several people wrote about bacterial overgrowth. Not a whole lot was written about collagenous sprue and I think it's still something we don't know a whole lot about.  I'm excerpting some of the emails below (but fewer than I'd like as my first summary was rejected as "too long")--and again thank you!  Lynne
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I have no insights to offer - only that I have a similar story.  I was diagnosed by symptoms only and told I had a classic presentation by a specialist at University of Chicago.  He was unwilling to do a challenge test with me as I react to severely to gluten.  He went on to a hospital in Boston and I saw a new doc at U of C who did bloodwork - which was of course negative as I'd been GF for years - and the gene test.  I did not have either of those genes either!!!  She insists I do not have celiac, although 
allergy testing ruled out a wheat allergy.  I DID read where there is another gene that needs to be broken down somehow with specialized testing (or something like that)  that can show celiac.  I'd be very interested in learning more.  I continue to become more and more sensitive myself - to where I even avoid placed where gluten is present.
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My daughter has had the genetic testing done twice.  She does not have DQ2 or DQ8 and she DEFINATELY has celiac disease.  I believe and her drs. believe that there is stil a yet undiscovered gene for celiac disease.This link below is my daughter's story that I posted on this list a few years ago.  She went through hell before we came to the above conclusion.I even consulted with Dr. Fasano on her case.  There are less than 5% that 
don't have DQ2 or DQ8, but obviously they exist.  I have offered my 
daughter's blood for research, but they cannot take her because she is only 
16.Read below from the archives of this list.  I cry whenever I re-read this 
about my daughter.  It was so awful of an experience.
http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?A2=ind0606C&L=CELIAC&P=R876&1=CELIAC&9=A&J=on&d=No+Match%3BMatch%3BMatches&z=4
And an addition...
http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?A2=ind0606C&L=CELIAC&P=R1298&1=CELIAC&9=A&J=on&d=No+Match%3BMatch%3BMatches&z=4
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My daughter and I don't have D2 or D8 either, but she has a celiac
biopsy and a positive blood test for anti gliadin antibodies according to Dr. Fasano.  She gets deathly sick on gluten and has ulcerative colitis to boot.  We have another gene that Dr. Fine says may tend to gluten intolerance. I have a positive blood test and going off gluten got rid of 30 yeras of irritable bowel

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Have you been checked for bacterial overgrowth? You could have that instead
of CD. You could also have Ulcerative Colitis or Crohn's disease. Have you
been tested for those? What about your appendix? Is that ok?
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I was sick all of my life and was tested many times for Celiac disease by 
the big Celiac docs--like Fasano. I don't have those genes. I don't have 
Celiac disease. BUT I do have gluten sensitivity with its accompanying 
genes. Don't believe for a minute that it is any less serious.

Unless you go to the guys who will admit that there is more to this than 
these two genes you will likely get nowhere. The ones who have a stake in 
maintaining forever that their beliefs (perhaps for the rights in certain 
tests, etc.) you will probably never be diagnosed with Celiac Disease 
because if you don't have the genes, you don't have the disease. But you 
probably have the primary disease which is Gluten Sensitivity. Celiac 
Disease is merely in my opinion and others just one small part of the 
disease.

Please consider having the very accurate tests, including thorough and 
complete gene testing, at Enterolab. It might very likely be very 
enlightening
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Have you considered looking at all of your beauty/body products for a source 
of gluten?  I have been gf for 7 years and for awhile now  I've been having 
problems that I couldn't figure out where the gluten was coming from as I 
was so careful.  My son who is newly diagnosed and is reading all labels 
read my deodorants, which is Ban, and saw it had barley in it.  We got to 
checking other deodorants and most of them have barley or hops in them.  My 
sister found wheat germ in her lip gloss after having trouble for about six 
months,  There was wheat protein suddenly in my hair coloring conditioner 
that wasn't there last time I used it.  It seems like they are changing the 
ingredients in beauty products that you have used for years without any 
notification.  It just proves again something that I tend to forget, read 
all the labels all of the time.
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It isn't a good idea to blame all your symptoms on gluten - I (diagnosed 
celiac) began having worsening GI problems, chills, fevers, night sweats and 
fatigue. Turned out to be CANCER and not gluten. I had Hodgkin's Lymphoma, 
now in remission.
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I have been gluten-free for 10 years, but for the last 6 months have had
frequent bouts of diarrhea.  I tried a couple of round of antibiotics,
thinking I had a "bug".  I tried probiotics and yogurt is a regular part of
my diet.  I finally called my gastro, who thought it might be colitis, but
wanted to do a colonoscopy to take biopsies and be sure.

The report was good, in that there was no evidence of polyps, inflammation
or disease - no collagen deposits.  He recommended that I take a fiber
supplement (Citrucel) and add more fiber to my diet to absorb the excess
liquid in my colon.  He also prescribed an anti-spasmodic for the cramping.
I'm hearing "irritable bowel" in between the lines.

The good news is that the program of extra fiber has been working.  I had
diarrhea for so long I was afraid to eat anything, so I was cutting out what
I thought were irritants - fresh fruit, fresh vegetables - in a word, fiber!

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
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