<<Disclaimer: Verify this information before applying it to your situation.>>
My question seems to have created several questions of its own. I've
included a summary of the responses to my original question, as well as
other information/data that I hope provides some info for fellow listmates.
Thanks to everyone who responded.
Jennifer
Richmond, VA
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SUMMARY of listmate responses:
You need 3 things to have celiac...gluten in your diet, genes
(in most cases, see not below), and an environmental stress
to trigger the reaction. The diet works to treat celiac because
you are removing gluten..No gluten, no reaction. Unless some
stress has activated the immune system response, those with
the genes can consume gluten without a reaction.
These is also the theory that the immune system response is
trigger by exposure to a adenovirus that has the same protein
sequences as gliadin, which would cause a reaction to gluten
even though genes are not present.
Basically, one quarter of population has the genes consistent
with celiac, but only ~1% is affected with celiac. It's probably
a case where an absence of the genes worked better to rule
celiac that having them determines who gets celiac.
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I thought the genes for both celiac and gluten intolerance were the same?
Please tell us the difference. All my family members who have been tested
have two genes, but not the same two.
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That's not actually how this works. You just need one of the genes to
have celiac disease. But it is important to remember that the gene is
necessary, but not sufficient, to cause the disease. That means there
are other genes that come into play. But you definitely need one of
these two genes to have it. But unless you also have the other,
unknown combination of genes, you won't get celiac disease. I recall
hearing that about 30% of the population has one of the two known
celiac genes. That's why the genetic tests are really used to rule out
a questionable diagnosis and is not useful as a diagnostic tool.
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There is a clear link with not being breast fed--you decrease your
chances of your child getting the illness even if s/he has the genes if you
breast feed for at least 6 months.
Now what is the difference between having CD and being Gluten
intolerant--I thought they were different words for the same thing?
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I thought gluten intolerance was more like allergy (antibodies), but not
a genetically identifiable thing.
I would be interested in the extra testing of which you speak! My husband
has the CD gene, but allegedly not CD, though gluten does affect him, so
I wonder if he has the gluten intolerance (gene?), too.
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CD and gluten intolerance, for all practical purposes, are the same thing
in terms of treatment and genes. I have never heard doctors talk about the
genes in terms of recessive or dominant. There's no regular pattern of
inheritance.
-----------
I have been told by various researchers that it is not a simple
dominant/recessive trait answer that we all learned in school. It is more
complicated and the scientists don't have the answer yet.
-----------
I can't answer your question but I am puzzled. I thought celiac and gluten
intolerance were one and the same. Were you each tested by the same process
and same doctors? What is the difference between celiac & gluten
intolerance?
-----------
CD vs. Gluten Sensitivity:
This information is included from “Dangerous Grains”
by James Braly, MD, and Ron Hoggan, MA.
Written in 2002. (ISBN 1583331298) Page 41
Non-Celiac Gluten Sensitivity: “…those people who have a nonspecific injury
to the intestinal mucosa that leaks food proteins and toxins into the blood
but do not have the damaged villi and/or increased intestinal immune cells
found in untreated celiac disease can be said to have non-celiac gluten
sensitivity.
Identification of this form of gluten sensitivity is as simple as getting a
blood test for specific antibodies. Non-celiac gluten sensitivity affects
about 20 percent of the American and Canadian population and, along with
the telling elevated antibodies against gluten, can be found in most of the
same ailments that are overrepresented among untreated celiacs.”
In addition to the above, my confusion/question arises when I try to figure
out how to classify my medical condition before and after my CD diagnosis.
I had moderate gastrointestinal issues for 15 years. Two years ago I got
Lyme disease and my health went downhill quickly. I believe that the Lyme
infection is what triggered my Celiac disease and caused the severe gastro
issues I had until diagnosis. SO, if I’ve had CD for the past two years,
is it logical to say that I was experiencing a sensitivity to gluten
(gluten intolerance) for the prior 15 years, and the active CD for only the
past 2 years?
TEST RESULT info: we were all tested by the same process at the same lab,
and all tests were performed by the same person.
Me:
HLA-DQ Gene Molecular analysis: HLA-DQB1*0201, 0302
HLA gene analysis reveals that you have both of the main genes that
predispose to gluten sensitivity and celiac sprue (HLA-DQ2 and HLA-DQ8).
My Husband:
HLA-DQ Gene Molecular analysis: HLA-DQB1*0603, 0609
Analysis indicates you have dietary gluten sensitivity. Although you do
not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-
DQ8), HLA gene analysis reveals that you have a genotype that predisposes
to gluten sensitivity [either HLA-DQB1*03xx (HLA-DQ3, not 0302), or any HLA-
DQB1*05xx or any HLA-DQB1*06xx (HLA-DQ1)].
Our Daughter:
HLA-DQ Gene Molecular analysis: HLA-DQB1*0201, 0603
Analysis indicates you have dietary gluten sensitivity.
HLA gene analysis reveals that you have a genotype containing the main gene
that predisposes to gluten sensitivity and celiac sprue: HLA-DQB1*0201 (HLA-
DQ2) and/or HLA-DQB1*0302 (HLA-DQ8).
Data Provided by EnteroLab with our lab results:
Interpretation Of HLA-DQ Testing by Molecular Analysis and Conversion to
"Serologic Equivalent": Today HLA-DQ gene testing is done by analyzing DNA
using molecular techniques. In the past, the methods were done by analyzing
blood cells for the antigens produced by the genes, and these past methods
were responsible for the most commonly known nomenclature for HLA-DQ genes
even today (using integers such as "DQ2"). These are called "serologic
equivalents" to the specifically analyzed gene material. The serologic
equivalents are as follows:
* If the first two numbers of the molecular type are 05, the serologic
equivalent is DQ1 subtype DQ5
* If the first two numbers of the molecular type are 06, the serologic
equivalent is DQ1 subtype DQ6
* If the molecular type is 0201, the serologic equivalent is DQ2 * If the
molecular type is 0301, the serologic equivalent is DQ3 subtype DQ7
* If the molecular type is 0302, the serologic equivalent is DQ3 subtype DQ8
* If the molecular type is 0303, the serologic equivalent is DQ3 subtype DQ9
* If the first two numbers of the molecular type are 03 but it is not 0301,
0302, or 0303, the serologic equivalent is DQ3
* If the first two numbers of the molecular type are 04, the serologic
equivalent is DQ4
The gluten sensitive, celiac genes are HLA-DQB1*0201 and HLA-DQB1*0302
(HLA-DQ2 and HLA-DQ8, respectively).
The other gluten sensitive genes are any molecular type involving another
HLA-DQB1*03 number (i.e., HLA-DQ3), or any HLA-DQB1*05 number, or any
HLA-DQB1*06 number (i.e., HLA-DQ1)
If you have one gluten sensitive gene, then your offspring have a 50%
chance of receiving the gene from you, and at least one of your parents
passed it to you. Having two copies of a gluten sensitive or celiac gene,
means that each of your parents, and all of your children (if you have
them) will possess at least one copy of the gene.
Two copies also means there is an even stronger predisposition to gluten
sensitivity than having one gene and the resultant immunologic gluten
sensitivity or celiac disease may be more severe.
We did our testing through EnteroLab (www.enterolab.com). Hope that helps.
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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