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From:
Dosha Anderson <[log in to unmask]>
Reply To:
Dosha Anderson <[log in to unmask]>
Date:
Tue, 8 Jul 2003 09:13:15 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

WOW!  Thank you for all of your replies.  This was definitely a topic of
interest among many people.  Here are the overall "votes" and then I have
posted a few of the specific emails:

7- asked me to summarize
8- say it CAN skip a generation or DID skip a generation in their family
8- say it CAN'T skip a generation or DIDN'T in their family
4- say there is more unknown than known... and a lot that isn't understood
2- made other comments
1- her relatives have "other" autoimmune diseases
1- has several autoimmune diseases "apparently caused by infectious
hepatitis"; no one else in his family has autoimmune problems.
1- says celiac has not skipped and her MD says the gene testing is false
1- asked if the gene testing could be wrong

I asked Prometheus lab this question, here is their answer:

A recent study of 4508 Celiac positive patients showed that 1 in 22 first
degree relatives(parent, child, sibling)of a Celiac patient also have the
disease. This is a very high prevalence.  Celiac disease is a genetic
variant which differs from a genetic mutation that is dominant or recessive
(blue eyes, blood type).  The parents may or may not also have the
variant.

I hope this information is helpful.
kathy

Another good response that I received:

I'm sure others will answer your question who are more knowledgeable about
the technical aspects of the answer, but as someone who has read this list
for a long time and attended a number of lectures given by celiac experts,
I
think I can answer it.

Yes, celiac can skip a generation.  It is not true that either parent must
have the condition if their child does.  And when you think of the
statistics: that for the average celiac, 1 in 10 or 1 in 12 of their
first-degree relatives also has celiac, that makes sense.  Otherwise the
rates would have to be a lot higher, wouldn't they?

Also, I don't think there is such a thing as one "celiac gene".  It is
more
complicated and confusing than that.  The last I heard, experts thought it
must be several genes working together.  And maybe some of us celiacs have
some of them and not others.


AND another response that makes you wonder what to believe:

I'm sorry I dont have an answer, and am very curious to read your
summary.  Our genetic tests were similar in that my husband tested
positive for DQ8, I tested neg. for either and our children (4) tested 1
w/ DQ2, another DQ8, and our oldest w/ both DQ2 and DQ8!!  Michelle Melin-
Rogovin from the University of Chicago Center for Celiac Disease wrote
when I posted and asked if our oldest was adopted.  Shes not - but Ms.
Rogovin said there was no way Siobhan could have both genes if I didn't
have one!!!  The university of Maryland Center for Celiac Research did all
our g. testing and bloodwork.  Prometheus did blood work AND we all tested
through EnteroLab.  Prometheus found some of us positive, UofM bloodwork
contradicted those results and EnteroLab showed that we were ALL positive
for antibodies for Celiac!!! The entero was our first test (today is the
anniversary of our pos. results!!! - rocked our worlds!), then prometheus,
then in total frustration we did UM testing.
The UofM could offer no help as far as clarifying the genetic results
saying that genetics could only confirm a diagnosis of celiac, and that it
was the bloodwork/biopsy that was needed to diagnose.  Genetics can not be
used on their own to diagnose Celiac since they are certain that there are
other genes responsible/involved but haven't identified them yet.  So
basically, they said the genetic tests are only a snippet of information
saying that if you have the gene you COULD get celiac disease but not
certainly.  If you are diagnosed w/ celiac through other means AND have
the gene, then you CERTAINLY have celiac.  So the lack of my genetic
disposition meant nothing to them, since I might or might not carry other
genes for it.  We all had symptoms - the kids and I went gf and have been
so for almost a year.  My husband (biologist) threw all the results out
the window because of all the contradictory results and a negative biopsy
(despite daily diarhea for years and other symptoms).
To me, it shows the danger of trusting testing only.  You have to trust
your instinct.  Ms. Melin-Rogovin said that if the kids were showing
symptoms and then improvement of gf diet, keep them on it.  She said
that's better proof than ANY med testing!  Wow.
I'm sorry to have gone on so long.  I didn't answer your question about
genetics skipping a generation, etc.  Dr. Fasano at the U of M is one of
the leaders in genetic research and celiac.  Maybe he can answer your
question.  Again, sorry to go on so long

* Please carefully compose your subject lines in all posts *

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