<<Disclaimer: Verify this information before applying it to your situation.>>
First off, please forgive me for taking so long to post this summary. Life
happened in a big way and email and listservs fell to the bottom of the list
of things that absolutely had to be done.
Following are the thoughts from folks who answered my question regarding a
statement made on this list that gluten intolerance/sensitivity can turn
into CD:
---your md should have given you a complete explanation...get in touch with
him/her regardless what info you get from list
--- Try reading this:
http://www.dieticiansblog.com/2008/04/17/ten-facts-you-need-to-know-about-ce
liac-genetic-testing/;
as much as folks would like to think so - negative testing doesn't rule out
celiac. It depends on the type of genetic testing done, if subtypes are
looked at, and there is always that margin of error - it is not a 100% test.
It is more an "at risk" type of thing.
My genetic testing was negative - but subtypes were not done by the lab that
did mine. Insurance is not going to pay for another set of tests, and my
history is classic celiac - so while I don't have the "gold standard" I know
I need to be gluten free. My mother tested as high risk - so she had both
genes for it.
--- It would be interesting to know how you were tested - who did the
testing? Was it someone reliable such as Kimball or Prometheus?
The other thing is that the gene tests are not 100%. If you test negative
there is still about a 3% chance that you do have CD. No one is entirely
sure why - possibly a gene mutation that the testing method does not pick
up, also perhaps up to about 10% of people with only one of the
DQ2 alleles may actually have CD
One of the things you will learn is that nothing about this disease is black
and white - it's all very gray.
--- Don't quote me on this but I think you are correct and the 'below'
statement may incorrect. There is an autoimmune condition known as CD. Some
folks may not have CD the autoimmune disorder, but are intolerant of gluten;
perhaps it is like a 'gastrointestinal allergy'.
For the people with the autoimmune condition, the collective wisdom seems to
be that they incur damage whenever they eat gluten, even if they do not have
any symptoms. I do not know if that is true for those with gluten
intolerance.
I don't know how someone without genetic celiac disease could 'develop' it
by eating too much gluten. Maybe if a predisposed person eats too much
gluten, it could trigger a previously unknown autoimmune condition??? I
don't know. I am not a medical professional.
--- There is more we do not know about gluten intolerance (GI) than we do
know. So that leads to a lot of confusing information out there.
But most importantly we do not all mean the same thing when we say GI.
About 10 years ago GI and CD were used interchangeably. Now we understand
that there are those who do not have CD but do react in some way to gluten.
That is often referred to as GI. Some view this
as its own condition. But others view it as a pre-celiac condition.
I think that both exist and maybe we should not use the same term for this
but we do.
So if you are on your way to CD and have been diagnosed GI and continue to
eat gluten you are likely to develop CD.
If you are GI on its own. Then you can test negative, have not gene and
still have a problem with gluten. You will never have full blown CD but you
still need a rigorous lifelong GF diet. So the distinctions really are more
for lively discussions than any practical application.
For a good explanation about GI see the educational materials on the GIG
website
http://gluten.net/downloads/print/glutenintoleranceflat.pdf.
--- I have never heard of gluten intolerance turning into CD - they are
totally separate conditions as far as I know. I could see either being
misdiagnosed, or not fully diagnosed. You do have to be eating gluten for
CD to kick off, maybe that's what they meant?
--- I know it is supposed to be genetic but as far as I know I am the only
person in my family to have had it in at least three generations of aunts,
uncles and cousins.
--- I saw your post on the celiac listserv and thought you might be
interested in the article at this link:
http://www.diet.com/dietblogs/read_blog.php?title=Celiac+Disease+vs.+Gluten+
Sensitivity
<http://www.diet.com/dietblogs/read_blog.php?title=Celiac+Disease+vs.+Gluten
+Sensitivity&blid=11838> &blid=11838. It includes an interview with Dr.
Fasano and describes the differences between celiac disease and non celiac
gluten sensitivity.
--- I think this a fairly new genetic diagnosis, gluten intolerant or gluten
sensitivity, with some controversy. Currently from what little I know most
people feel you cannot be celiac unless you have one or both of the HLA DQ 2
and 8 genes. I had genetic testing and had two copies instead of HLA DQ 1,
sub type 6, which some believe codes for gluten sensitivity. They describe
it, gluten sensitivity, as a larger group with a smaller sub group of people
with a more severe form of it known as celiac disease. One cannot turn into
the other. One difference is a longer delay in reaction time with the
sensitivity, 1 to 3 days, as compared to the much shorter time for a Celiac
to react to gluten. CD is an autoimmune disease, I have read gluten
sensitivity is not. It's considered a IgG type reaction. Google IgG and
gluten, Enterolab, and Hadjivassiliou for more info.
--- DQ1 is another gene that can indicate gluten sensitivity, usually with
neurological symptoms. There is a lot of great reading on this here:
http://jccglutenfree.googlepages.com/
https://www.enterolab.com/StaticPages/Frame_Faq.htm
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
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