My doctor called me back this afternoon. I had already gotten the other results, but she had run a vitamin B, ANA antibodies (that can indicate autoimmune disorders... mine had been elevated before, and she wanted to check it), and the full celiac panel. The results:
Vitamin B= in good range (I figured this since I've been taking a good complex now for quite some time).
ANA antibodies= negative (good news!)
Celiac Panel= all negative (I'd been off of gluten again for three weeks, so not sure, but then again, I know that many, many people get negatives. I figured I would, too).
I wasn't surprised by this last thing. So, maybe I'm just gluten intolerant. It's hard to say. I figure in the future, I'll order the stool sample kit from Enterolab. Sounds gross, but I'd know if there are antibodies or if I have genes for either GI or CD. It's worth it to me, but it might be a few months.
The doctor said, "keep on your gluten free diet until your symptoms get better."
Hmm. I said, "I'm staying on it, period! It's the only way I feel good."
How about you? Did the celiac panel indicate anything for you if you've had it run?
Another question: How long have you totally abstained from gluten? Enterolab results are supposed to be accurate even after abstaining over a year. Their limit is 2 years. I had abstained from gluten for 3 months when I did their stool test. My results were still positive for IgA gliadin antibodies, tissue transglutaminase or Ttg and one of the main genes that predisposes to celiac disease. I was taking digestive enzymes before the test and didn't know I shouldn't. So my 'malabsorption' test came back normal, because digestive supplements can mask malabsorption issues. However, I had obvious signs of malabsorption (floating stools), which resolved after getting HCl supplememts, which helped me digest fats. (Floating stools are often caused by undigested fats on the stools.)
ReplyDeleteAnyway consider how long you've absolutely abstained from gluten before paying for Elab tests. If you can afford them, I'd get the complete panel (gluten, casein, Ttg, malabsorption and gene test) as well as the 3 other allergy tests for soy, egg and yeast. IgA antibodies stick around in the gut much longer than IgG antibodies remain in the blood. So you might just get a positive result for gluten intolerance from Elab tests (using IgA antibodies in the stool).
BTW I've done many stool tests for various gut bugs, but Elab's test was easiest. You just eliminate into a 3# tub with wings (to affix to the toilet), put the lid on, put it in a box, call Airborne Express (or whomever they use now), and hand the box to the delivery/pickup person. EZ, but expensive, though worth the $$$!
Did you move since you last blogged? I sent you a Christmas card, which came back with a 'not at this address' note. Email me your new address or pm me on celiac.com (which I believe is private).
ReplyDeleteYeah, I thought about enterolab, but now I'm not sure. The perils of having a research geneticist/biologist for a husband. lol
ReplyDeleteI think the antibodies might be worth it, but not the genetic testing (because as my husband said, the question is whether those genes are being expressed (usually you have to do RNA testing to find that out) and whether they are only linked with a certain disease some of the time, etc-- and I wonder at Dr. Fine's not having published a lot more on his testing methods... and he's an M.D., not a PhD). But that's all beside the point really. I'm sure my family has a propensity for gluten sensitivity one way or the other.
Do you think the stool antibody testing is better than the regular blood draw antibody testing? I already know I need to avoid wheat, and I limit dairy. If anything makes me feel icky, I basically try to avoid it. I think it will be easier to hear my body speaking now about different foods than it was. I'm seeing that now that I'm strict about gluten.
First of all IgA antibodies survive much longer in the stool, than they do in the blood, because those antibodies originate in the intestines. So if you haven't been eating lots of gluten daily, before a blood test, your test for IgA mediated gliadin antibodies will be negative. Blood tests assume you have enough intestinal damage for those antiboies to 'leak' from the intestines into the blood.
ReplyDeleteDr. Fine's research is based on the fact that the longer we consume gluten, the more damage we suffer. If you can catch the antibodies in the stool where they originate, before so much damage occurs to the intestines, the patient can get diagnosed and stop consuming gluten before those antibodies start attacking other organs and really wreck havoc on the intestines. With people like me who were undiagnosed for many years intestinal lesions caused by antibody damage don't heal. (You can read more about the theory behind Enterolab on their website.)
Secondly, to get your work published, you need peer review. Most docs are so brainwashed by the current CD protocol, that they won't even review Dr. Fine's work. I talked to him about his catch 22 situation 6 years ago at a local celiac support group meeting, where he explained the research behind his testing approach. However, he's not out to make money as much as to get people healthier.
No matter what you (or your husband) believe about Dr. Fine or Enterolab's approach, you won't get a positive dx from blood tests unless you resume eating gluten daily for at least 3 months before your test. I didn't want to do that when I bought the Enterolab package of tests for gliadin antibodies, casein antibodies, malabsorption, tissue transglutaminas and DNA.
Yes, DNA just suggests possibilities, but add that to positive results for the other tests and you get a clearer picture of celiac disease and/or gluten intolerance. Also all those test results will keep you from every allowing yourself 'just a little' gluten, when you're feeling well. Moreover, you might want to get your daughter tested. Autism is highly correlated with gluten and casein intolerance.