<<Disclaimer: Verify this information before applying it to your situation.>>

Thank you to listserve members:

I received over 47 replies and I apologize if I could not respond to 
each and everyone.

But here is a synopsis to the question if genetic testing is reliable:

Just a reminder that the situation is that my daughter was diagnosed 
with celiac last July.  My 3 year old son has exact same symptoms 
including failure to thrive but he tested negative on TTG and on gene 
testing for DQ2 and DQ8.
Two people out of all the replies said that the gene test would be 
reliable and he probably is sick due to other causes.  Most of the 
others cited the unreliability of the test.  Four people told stories of 
themselves or others who had celiac but negative gene marker.  Dr. 
Fassano of GF Living Magazine stated that the gene is absent in up to 3% 
of the celiac population and present in 30% of the general population.  
2 people decided not to test because of this unreliability factor.  It's 
not impossible to have celiac with a negative test.  Dr. Fassano 
recommends biopsy.  1 person wrote about her daughter, age 9,  TTG and 
gene testing negative but she was symptomatic and responded well to a 
diet.  There is the possibility of gluten intolerance with same symptoms 
and the gene test does not measure DQ1, DQ3 and DQ7. Go with your gut 
was the general feel of the replies.  Don't trust the test.  Doctors 
don't know everything.  Another person city that the sibling risk is 
26.3%.  There was one suggestion to use Cyrexlabs since the standard 
tests are not detailed enough.  One person suggested to do a colonoscopy 
and upper endoscopy, put my son on a GF diet for 1 - 2 months to see if 
it makes a difference.  Two people said that blood tests are not so 
reliable at this young age and that "testing is worthless next to 
mother's intuition."  2 people mentioned that Prometheus tests are not 
100% reliable and that Enterolab is a good alternative.  One woman 
suggested a full work-up at the May Clink which has a special protocol 
for testing.  She also suggested U of Chicago with a special interest in 
children.  Finally, one person said that there is no full proof test.  
If daughter got better on GF diet, why not try for son?

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