Celiac Panel Blood Tests

[sMann]

How accurate are they? I've been gluten-free for about 18 months, and the doctor said my blood shows no sign of antibodies (or something like that). Does this necessarily mean I am safe to have gluten, because I know for a fact that it causes me to have bloody mucus.

Thank you,

Steve

[Sharon C.]

A blood test now should show no antibodies if you've been gluten free 18 months. Going back to gluten knowing it causes bloody mucus seems like a bad choice.

[tarnalberry]

The blood tests are tests for antibodies to gluten - reactions to gluten. If there's no gluten in your body, there's no resonse, and no antibodies to find. That's why they often test in 6- or 12- month intervals in order to verify that blood tests show no antibodies.

If you originally tested gluten free, or know otherwise from your symptomatic history, that you are gluten intolerant, then you need to remain gluten free for the rest of your life.

[sMann]

Thanks guys, I knew something wasn't right. Are doctors honestly that ignorant to things like this or what?

[CMCM]

If there's one thing that characterizes celiac disease, it's that of near total ignorance about it. I have yet to meet a doctor who knows anything at all about it. My own GP told me "You know a lot more than I do about celiac disease." And this state of ignorance has persisted for DECADES......it's just not taught in medical school in this country. Doctors in Europe are quite knowledgeable, though. Since very few doctors know about it in the U.S., relatively few people are diagnosed. It's pathetic, but has meant that those of us with celiac disease tend to diagnose ourselves thru various means. Unfortunately, huge numbers of people suffer throughout their lives and never learn what their problem is/was. Knowledge is everything, so my advice is always to read read read and learn learn learn. "Dangerous Grains" is a good place to start (it's on Amazon for about $10).

Thanks guys, I knew something wasn't right. Are doctors honestly that ignorant to things like this or what?

[happygirl]

I think about Celiac testing like diabetes testing.

When a person with diabetes who doesn't know it yet is tested, their blood sugar levels are all out of whack.

When a person with Celiac who doesn't know it yet is tested, their Celiac blood panel is (often-not definitively) out of whack.

When a diabetic gains strict control of their diet and learns to manage their diet, when they test their blood sugar, it is normal. It doesn't mean that they dont have diabetes anymore. It means that they are doing the necessary steps to prevent problems. When they start eating bad, their sugars would go up again.

When a Celiac is in strict control of their diet, when they test their Celiac panels, they return to normal (may take a little while for some, but in general, on a strict gluten free diet, they return to 'normal ranges.') It means they are doing the necessary steps to prevent the Celiac reaction (i.e., the celiac reaction only occurs when gluten is ingested). When they start eating gluten again, their numbers would go up again.

Hope that clarifies. And yes, in terms of Celiac, doctors can certainly be that ignorant. We could write a book on the ignorant things GIs have said to us....and your experience mirrors MANY MANY others!

Having negative blood work to a Celiac on a strict gluten free diet does not mean that you can eat gluten again. It means you aren't eating gluten and causing a reaction---which is a good thing!

[sMann]

I'm just confused as to the whole antibodies thing. If your body produces antibodies for something, do they not stay in your system forever? Isn't that how vaccines work? Thanks for the support thus far.

-Steve

[tarnalberry]

Not all antibodies work the same way, and no - not all antibodies stay in the system for ever. There isn't enough 'space' in the body (and I mean that literally) to hold antibodies to *everything* that your immune system produces an antibody to. It may produce antibodies for a while, but the immune system is somewhat intelligent (no, I don't mean 'intelligent' in the conscious way, but chemically clever, if you will) in that it doesn't continually produce antibodies without a catalyst in all situations. In the case of some diseases, some portions of the immune system will 'keep on file' (in various cells designed for the purpose) antibodies, but even this isn't forever, and isn't in all cases, and is more the case is diseases. (The actual chemical process involved in celiac disease is a bit different, which may be the reason for the misunderstanding, now that I think about it.)

[sMann]

Makes sense. Celiac disease isn't a traditional disease after all. Thanks for clarifying.