Gluten Avoidance: EXTRA Care Necessary for Effect?

[osu-danuki]

Hi guys, I'm trying the gluten-free thing for the past few weeks and I seem to notice a reduction in pain, as well as a chronic tendency to diarrhea (though neither have gone away completely). I did have a coeliac panel blood test done (admittedly about two weeks after I had quit eating gluten, but that supposedly isn't long enough for the antibodies to stop showing up?), which came back negative, but I seem to have other risk factors, such as being Irish, type-O blood, (and having CPPS, of course), so I'm going to stick with it for another month or two, at least, to see.

My question is, is it necessary to be CRAZY vigilant about even a tiny amount of gluten in order to properly try out the efficacy of a gluten-free diet? I'm not talking about having a muffin now and again, I mean more like, do I have to avoid products which contain no wheat, but which say "this product produced in a factory that also makes things with wheat," or can I, for example, eat the cheese and toppings off the pizza crust, which have been in contact with the crust, so long as I don't eat the crust?

I know people with true coeliac are extra careful, since apparently even a tiny amount of gluten can make them feel ill. This is certainly not the case with me. I do think I'm gluten sensitive or intolerant, given that I had a lot of withdrawal pangs and it felt weird the one time I ate a communion wafer after having no gluten for a week, but it's also not like I will notice an immediate and major increase in pain after consuming a tiny amount of gluten (last night, for example, I ate a sushi roll which had little bits of fried tempura batter sprinkled on it; I thought tempura batter was made with rice flour, but turns out it has wheat. This morning I did have a bit of diarrhea, but it's certainly not like I had terrible pain within hours of eating those sushi rolls, either).

The only thing is, I want to make sure I'm getting the full effect of a gluten-free diet in order to give it a serious trial. So to get the real effect do you have to be crazy vigilant (no eating anything that may have even had contact with wheat), or is just simply avoiding anything with a gluten-containing ingredient good enough (can I eat the cheese and toppings off the pizza)?

[webslave]

1. Bear in mind that those tests are not foolproof. I tested negative to a biopsy test, yet I know I have celiac disease because my child has celiac disease and there is a genetic component.
2. Even small amounts of gluten can make you feel ill. Just avoid anything with it listed in any way.
3. Gluten withdrawal has immediate benefits, but most of the deeper benefits only accrue after months and sometimes years of abstinence.

[osu-danuki]

Hi Webslave, did you also test "negative" for the celiac panel blood test (antibodies)? Do you feel immediately worse if you eat gluten, or only the next day or so? Do you feel worse even if you accidentally eat just a small amount, or do you have to like, eat a bagel? Thanks for the advice. Were it not for this forum, I don't think gluten (or diet in general) would have been something I'd have EVER considered as a contributing factor, but I am increasingly suspecting it, as my symptoms have improved with the past few weeks of gluten avoidance.

[webslave]

No, no blood tests, because when I had the biopsy the blood tests were not yet available, and there is no way I am going back on gluten to enable the blood tests now.

The first day I eat gluten I am fine, but the second day I get tired and depressed, and it gets worse from there.

Even small amounts can cause problems, even if it does not intuitively seem like it, and small amounts take many days to show symptoms in me. Large amounts cause problems more quickly and obviously. But some people report florid symptoms from small amounts, so YMMV.