CELIAC Archives

Celiac/Coeliac Wheat/Gluten-Free List

CELIAC@LISTSERV.ICORS.ORG

Options: Use Forum View

Use Monospaced Font
Show Text Part by Default
Show All Mail Headers

Message: [<< First] [< Prev] [Next >] [Last >>]
Topic: [<< First] [< Prev] [Next >] [Last >>]
Author: [<< First] [< Prev] [Next >] [Last >>]

Print Reply
Subject:
From:
Beth Athey <[log in to unmask]>
Reply To:
Beth Athey <[log in to unmask]>
Date:
Tue, 5 May 2009 18:17:03 -0400
Content-Type:
text/plain
Parts/Attachments:
text/plain (91 lines)
<<Disclaimer: Verify this information before applying it to your situation.>>

--- You are correct---without the gene you can't have CD!   I personally
think 

they have not identified all the genetic markers, though.  Our son is the
only one in our family of four who does not test positive for an identified
CD gene----but his reactions are just as violent as his sisters.  I don't
understand it and it would seem that if he reacts so violently---eating
gluten is dangerous for him too.  I guess the future will tell as far as
just how many genes are involved.

 

---First of all, labs are not 100% fool proof.  They do make mistakes, often
more than once.  I can tell you from a professional standpoint that the
false positive/negative rate in overall testing of any kind approaches 60%
error rate.  Did the same lab company and location perform your results?

And then, if you truly do not carry the gene, you can develop CD (which is a
state of abnormality of the villi of the small intestines) from viruses
(ever hear of the retro-virus?), chronic infections, effects of chemotherapy
and/or radiation, poor nutrition, even over-exposure to gluten (it's in so
much processed food you know and we all previously loved our store-bought
cookies and were encouraged to eat high wheat foods, etc..  Our small
intestines are a miraculous and highly important mechanism to our overall
health and because CD takes place on a cellular level it is not fully
understood yet.  70% of our immune system functions take place in the small
intestine.

CD is a very new disease to the medical profession, not really new in that
it has not plagued mankind for centuries, but the testing for it and
research into the whys and wherefores still has a long way to go.

Suffice yourself and take comfort that you have found out what ails you, and
that you can do something about it through your diet to prevent complete
deterioration of your health.  I empathize with you in that until 8 years
ago before I developed colon cancer with no symptoms, and then full blown CD
3 years later, it was a hard row to tow, but you can adjust beautifully, I
promise you.  Best of luck and keep up the research, it's a big learning
curve but you can do it,

 

--- I was surprised at that response as well!

I know one can have CD and be without symptoms, but the damage is still
taking place.

I don't think anyone "turns into" a  person with CD.

 

Wow!  That's a lot of info, and I haven't had time to look into all of it.
However, I learned quite a bit from just the responses I received, so that
was very helpful!

I initially tested through Enterolab.  That testing showed that I had an
elevated Antigliadin IgA, indicating an active gluten sensitivity.  I also
tested positive with an autoimmune reaction to transglutaminase.  As well, I
tested positive for two copies of the gene that predisposes one to gluten
intolerance/sensitivity.

Because I came across differing opinions about Enterolab, I followed up with
a visit to a traditional GI doc.  She drew bloodwork for testing with
Prometheus.  It came back showing no CD gene and no indication of IBD
(which, from what I understand, is a relatively new test, and she thought I
might have that).  She also performed an endoscopy and a colonoscopy of
which both came back negative.  She was never fully convinced, I don't
think, that I have gluten intolerance.  I think the only thing that may have
given her pause was that I had a skin rash on my left elbow.  Once I went
GF, it went away.  Things that make you go hmm. J   All I know is that when
I don't eat gluten, I feel "normal", like I did about 3 years ago.  So,
that's enough evidence for me. J

 

Thank you all for your insights,

Beth Athey

 

 

 


Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC

ATOM RSS1 RSS2