I was like you - I really thought that I had celiac sprue, (I still do, for that matter. LOL). It turns out that the type of gluten sensitivity that we have, still affects the small intestine, though not quite like celiac disease, but it affects the colon much more.
Due to the fact that most of the gluten, (gliadin), antibodies are produced in the colon, rather than in the small intestine, not enough of them get into the bloodstream to be detected by the classic celiac blood tests. Therefore, we almost always test negative to the classic celiac tests. There is a lab in Dallas, Texas, called Enterolab, which offers a stool test that can accurately detect gluten antibodies, (and several other antibodies, such as casein, soy, etc.), in stool samples. That's where most of us get our tests, if we want to verify by testing, that we are gluten sensitive. Obviously, though, the test isn't really necessary, since we can test ourselves by cutting out gluten, (and any other food sensitivities), and if doing so resolves the symptoms, that proves that the sensitivity exists.
Many of us have also done gene testing at Enterolab, and yes, many of us have one or more celiac genes. There are also several other genes that indicate gluten sensitivity, but they are not related to celiac disease. If you want to see how some of us have tested, we have the results listed here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
Many of us seem to be more sensitive to gluten than the average celiac.
Tex
P S I see that Joan has already brought the Enterolab site to your attention.
P P S Regarding people understanding MC - we have found that no one truly understands what we go through with this disease, unless they actually have the disease. That's one of the things that makes us sort of an online "family" - we understand each other, because we've been there, done that.
from another newbie. You've come to the right place. Start by reading the pertinent info here and asking questions. Tex probably knows more than your doctor......
I did the posting lol!! i just edited it above ...
you made that very clear within 2 minutes lol!!!