In an effort to avoid testing everyone every 3 years if they don't even have the gene, we have started genetic testing. .
And we've decided to genetic test my older daughter when she's due to be retested (2-1/2 years) rather than run a tTG on her. No sense testing her every 3 years for the rest of her life if she doesn't have the gene. Right?
Does all this make sense? The doctors certainly seem to know less about it than I do!
The reason I gave a reply previously with info on another gene that is associated with celiac was because of this part of your post. While gene testing can be a part of the diagnosis process just because someone does or doesn't have one of the two most common genes does not mean someone will or will not develp celiac.
Even if you older daughter doesn't show positive for DQ2 or DQ8 doesn't mean she may not develp the disease at some point. Are her chances greater if she does have them, yes. You could chose to test her periodically until adulthood or you could choose to test her only if she develops symptoms. Do be aware though that celiac has many presentations so it may first appear as skin or mood issues not GI related ones. Many doctors forget or are not aware that celiac impacts much more than just the gut.