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From:
Lin Goldkrantz <[log in to unmask]>
Reply To:
Lin Goldkrantz <[log in to unmask]>
Date:
Tue, 27 Oct 2009 22:51:21 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

I had more than two dozen responses to my question about genetics. I am including (in more than one email) only those from professionals or those who provided links to expert information.
I'm still processing the information myself., but it makes for interesting reading.

Thank you to all who replied. 

Lin

1.  I am the only one in our family who has actually been diagnosed. However, being an old anat/physio teacher who taught karyotyping to high school seniors, I even did a large "family tree" and figured out what my whole family had for genes - with the help of a few members being tested through Enterolab. You are correct in saying if you have the celiac gene, you may or may not be triggered. Also, even if you don't have the celiac gene, you can have gluten sensitivity genes and have multiple problems from gluten - especially in the neurological area.  My oldest has 2 gluten sens. genes (no Celiac gene) but has more gut and neuro issues than most diagnosed celiacs. The one with the CD gene only deals with being gluten free. All of the rest of us have numerous other food intolerances in addition - corn, soy, dairy, sugar, additives, chocolate, other grains, etc. 
   Being president of our support group has shown me so many different faces of gluten problems, as "everyone seems to be the same - but different." Go to www.enterolab.com and read what Dr. Fine has found out, and Dr. Mario Hadjivassiliou. Also www.glutensensitivity.net and www.glutenfreeandbeyond. I know now that just because you don't test positive for celiac does NOT mean you don't have problems with gluten. Just keep reading and learning more on your own.

2. a recent paper by Michelle Pietsak that should help clear up the genetic
risk for you.  A summary is here:
http://www.celiac.com/articles/21903/1/Using-HLA-Alleles-to-Stratify-Celiac-
Disease-Risk-Levels/Page1.html

3.I am not sure about your question about gene dominance..but my instinct is 
that only one parents need to have celiac for the disease to get passed on 
in both parents.
As far as genetic testing...keep in mind that even if the gene comes back 
positive it does not mean that your sons will develop celiac disease...as 
approx 30-40% of the entire population has HLA DQ2 and DQ8 genes. Genetic 
testing can however rule out if you won't get it..ie if your genetic test is 
negative, it is not likely you would ever develop Celiac...
So for instance...I  have Celiac; my son's antibody test is negative so far. 
However if I get genetic testing done (and next time I plan to do so), If 
the test comes back negative for the celiac gene, I will no longer need to 
re-screen antibodies,as he won't get celiac. However if I get a positive 
test back, it does not guarantee that he is destined to developed celiac 
disease... but re-screening with antibodies would be necessary every few 
years or after any change in health status.
I am speaking from the information that was discussed at the last 
international GIG meeting in May 09... from a physician who went into great 
detail about testing.

Here is the info copy and pasted from the University of Maryland School of 
Medicine  Celiac website:
http://celiaccenter.org/celiac/faq.asp#hla

"What is the meaning of HLA DQ2/DQ8?
As an autoimmune disease, CD is the consequence of the interplay between 
genes and the environment (gluten). We don't know all the necessary genes to 
develop CD; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop 
the disease. Since 1/3 of the general population also have these genes, the 
presence of DQ2 or DQ8 does not imply that the person will develop CD, 
rather, that they have a genetic compatibility with CD. Conversely, the 
absence of DQ2/DQ8 almost certainly rules out CD. "

4.I'm not in the medical field but I have done a lot of reading on this and had my genes done.  I am homozygous for the gene which means that I got a copy from each parent.  Neither parent was diagnosed with celiac, though I'm betting my father had it.  My kids by definition have a copy of the gene from me, so both are at higher risk of getting celiac than the general population.  One has celiac, the other not (yet).  Here's a source http://www.healthline.com/galecontent/celiac-disease-1#geneticprofile but I have read about this in numerous other places over the years since I was diagnosed, including what was on my genetic report from Prometheus.  I am supposed to have the earlier onset and severe symptoms associated with having 2 copies of the gene, but I was diagnosed at 50 and had lactose intolerance and gas.  So, it's complicated.

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