BlueTaelon

I ran into the same problem with our GI and he swore even a week would be enough to get + biopsy. I tried and dd reacted to badly, I ended up going behind his back and had DNA testing done and of course she came back + for the gene. He kind of backed off a bit but did state we can just test her when she's in her teens and hits the rebellion phase and starts sneaking gluten like most celiac teens seem to do. Our family is gluten-free period, I'm not going to change our diet to make some Dr happy when I see for myself how much our lives changed by the diet. I spent most of my life in severe pain and misery, I was begging for a hysterectomy at only 24 because I was in so much pain and I thought it could only be my girly bits causing it. The cramps would literally bring me to my knees when they hit they were so painful. All my health issues went away when I went gluten-free and since then we've found out celiac is very heavy in my family tree including a biopsy dx'd 30 years go!. 12 different people in 4 generations, thats a lot of misery going around!

The problem is, not having the currently identified and tested for genes doesn't ACTUALLY rule out a problem with gluten. Not only will it miss some (albeit a small percentage) of actual celiac disease cases, but it will also miss a larger (but undetermined) number of gluten sensitivity cases.

Honestly, when the best a test can tell you is "maybe, probably, but we don't really know" I kinda don't fine the test worthwhile. That's just my opinion, however, and other people have found it more useful.

I agree and they haven't ID'd all the celiac genes yet I don't think. I was gluten-free for a couple of years for my dd who reacted strongly to my eating gluten when she was nursing and I got really sick when I tried eating gluten again around a year of gluten-free. Neither of us could stay on gluten long enough to get a + test the symptoms were so bad. We finally did genetic testing through Kimball Genetics about 4 years into being gluten-free and both came back + for the gene. My 3 yr old was tested at only a few weeks old when I got glutened a couple of times on accident and she reacted just like my older dd did and she came back - for the gene despite reacting just as badly as we do.