I first want to thank you for all the wonderful
responses
<<Disclaimer: Verify this information before applying it to your situation.>>

Hi folks, 

I first want to thank you for all the wonderful
responses and support.  This list serve is like having an extended,
caring family -- one that doesn't always have all the answers but lets
you know you are not alone and the information about Celiac is getting
better all the time. 

I apologize also for not responding to
everyone individually -- I just got so many responses it is all I can
do to gather them into a somewhat coherent summary.  Essentially, we
have decided that we will probably try to get the genetic testing done to see who actually carries the gene in our family and then go
from there.  I also will continue to research about gluten in children,
including speaking further with my daughter's GI - Dr. Hoffenberger at Children's Hospital in Denver - as he studies multi-generational aspects of the disease. 

Karen Shirley
Colorado

SUMMARY PART I


Pregnancy can trigger the disease to become active. 

Having negative blood tests is very common.  
Seems it can be attributed to the doctor, the lab or just
that it isn’t showing in the blood. 
There were postings about negative blood
tests on  3/7/2003, 7/17/2005, 10/11/2005, 12/12/2007, & 1/13/2008.
Blood work is just a screening tool.  Make sure to get all 4 blood tests – a Celiac
blood panel. 
Up to 1/3 of people with Celiac
disease will test negative on bloodwork. You really should have
the biopsy, it's the only way to know for sure.
If your daughter had Celiac---it came from your or your
husband.  Period.  The blood tests are notoriously high false
negative. 

Recommendation to go to Enterolab.  www.enterolab.com
Comments on them included:  I think they have the most definitive, 
noninvasive, inexpensive (compared to other testing) method available today.
Visit their Frequently Asked Questions section. You need to
print it because it is about 13 pages long. I consider it a crash course in
celiac. 
I strongly urge you to get tested through Enterolabs! 
My husband’s blood 
work was also totally negative---but we
knew he had problems.  Enterolabs 
showed that he had very high antibodies with damage happening AND he carries 
one of the major genes.  Our daughter's blood work was positive, and 
Enterolab showed that too.  Our whole family is gluten free----even though 
our son was actually negative with Enterolab. 

Genetic testing was recommended frequently.  (No we have not yet had this done) 
This won't diagnose the disease, but it can help to rule it
out, or to tell you if you should continue periodic blood screening.  
Kimball genetics was what we used - mouth swab.  Our
health insurance recognized the testing charges - but you need to get the codes
from Kimball first and check with your health
care coverage first to make sure.
You might find out with this that one of you
"can't" get Celiac - which would answer your question about going on
a GF diet.  You might be able to decide which side of the extended family
to bug more about getting tested.
If she had
one gene, then get yourself tested. If she has 2, she got one from each parent.
If it's two of the gene one, you know what you have.  If it's one of each,
testing if either mom or dad will let you sort it out.  While ~1 in 20 has
celiac without having either of the 2 genes generally associated with celiac,
that's usually an indication that further testing for celiac isn't required.
Have the genetic test for  the HLA DQ2 or DQ8
markers and then you'll  
know if you have the gene or not. Either you or your husband will be  
a carrier of the gene.

Chances for the general population of having the disease are about 1 in 100;
once you have a biopsy diagnosed person in the immediate family, the chances
for 1st degree relatives increase to 1 in 22.  

Please feel free to call the University of Chicago Celiac Disease Center  hotline at 773-702-7593.  They are happy to discuss individual
situations further and offer advice from our medical director.    They can supply genetic testing kits to help
narrow the focus for further testing – sent at no charge, but process of test
is $400.00, but with a doctor’s order should be covered by insurance
reimbursement. 

You are right about there being something recent posted
about pregnancy & celiac. It was posted May 28, 2008 and was from Gluten Free Works so look for
that name when searching the archives. 


      

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