I Want To Get A Test Done But Im Worried ...

[mr. moore]

if it comes back negative, that it was all in my head!!

[ravenwoodglass]

Tests aren't perfect and false negatives are seen but the adherence to the diet and the resolution of symptoms is also a diagnostic tool. After you have all the testing done that you choose to do a dietary trial of the gluten free diet can sometimes provide the answer.

[ShayFL]

That's right. I was NEG for hypothyroid for nearly 15 years (because the lab ranges were WRONG). It WAS all in my head until I showed my doctor the correct lab ranges and got treated properly (and got better).

So do not worry if you get a NEG result. Try the diet anyway. If it works for you, then you have your answer. Even if they still think it is all in your head, at least you will have a healthy head now.

[lizard00]

False negatives are not uncommon, I am in that category. In fact, my doctor told me that I could be half dead and still not test positive on a celiac panel, even though I do have it.

No doctor can argue with positive dietary results.

[caek-is-a-lie]

  lizard00 said:

False negatives are not uncommon, I am in that category. In fact, my doctor told me that I could be half dead and still not test positive on a celiac panel, even though I do have it.

No doctor can argue with positive dietary results.

Haha I want YOUR doctor! My doctor said via e-mail the basic equivalent of "if it hurts, don't do it" and left it at that. Testing was optional. He didn't think testing was necessary but at the same time left it up to me to figure out what to call it. Doctors confuse me. Is 4 weeks gluten free too late to do a blood test? He wouldn't say. I'll never know if I have intestinal damage. In a way I guess it doesn't really matter if the diet's working, but on the other hand I think it kind of stinks. I kind of want to know (unless it's negative and they use that to call me crazy.) You can see my dilemma and I can't seem to get a straight answer from anyone. *sigh*

[LAH]

I'm in the same situation as I finally realized I needed to stop eating gluten about 3 years ago but I did not have insurance so I just stopped eating gluten and started getting better. Now I wonder if I made a mistake but I can't imagine eating gluten again just to get an 'official' diagnosis. I"ve accidentally injested gluten or gluten contaminated food several times and honestly say I don't want to suffer the price just for a positve test. I talked to one woman who was DX after a 2nd enteric biopsy, apparently the first pathologist was blind or the doctor took villi from a patch of undamaged tissue but she was brave enough to go back for a second biopsy.

I've been lucky to find a nurse practitioner who has celiac disease and she told me it could be gluten intolerance or celiac disease after I described the symptoms I was exeriencing to her. I was so relieved to find someone who understood the symptoms I was experiencing and who could tell me that some people do become very sensitive to small amounts of gluten once they go on the diet.

Stay on the diet why suffer more?

[mr. moore]

stay on the diet for sure!!

you know its only been 2 days but i feel my vision is getting better and i don't feel as anxious. hmmm....

i wrote this in another topic but how much is enough gluten to set you off?

[caek-is-a-lie]

  mr. moore said:

stay on the diet for sure!!

you know its only been 2 days but i feel my vision is getting better and i don't feel as anxious. hmmm....

i wrote this in another topic but how much is enough gluten to set you off?

The tiniest little remnant of a crumb that I tried to wash off my fork with soap and lots of hot water. That's how much. (someone used my fork at work to eat cake! Ahhh the horror!!! I seized all night.)

[LAH]

I have a reaction to some products that are labeled gluten free, ex. Sams Choice from Walmart always gets me as do any type of corn or potato chip. My nurse practitioner said that some people become very sensitive to very small amounts of gluten after going on the diet and that I was probably one of those people. The gluten free label does not always mean 100% gluten free, a product can have up to, I think, 200 ppm gluten and still be labeled gluten-free.

[mr. moore]

  LAH said:

I have a reaction to some products that are labeled gluten free, ex. Sams Choice from Walmart always gets me as do any type of corn or potato chip. My nurse practitioner said that some people become very sensitive to very small amounts of gluten after going on the diet and that I was probably one of those people. The gluten free label does not always mean 100% gluten free, a product can have up to, I think, 200 ppm gluten and still be labeled gluten-free.

**U(*(&(*&(*#*#**#

what?! you mean ive been eating brown rice bread that could have gluten in it? is there ANY FREAKIN way to do this diet?! what does ppm mean?

[mushroom]

ppm = parts per million! But I think in the U.S. the standard is 20 ppm. The Codex Alimentarius in the UK permits them to include 200 ppm, as I understand it, which would probably be enough to set most people off from my point of view.

But I am not one of the more sensitive ones to tiny amounts and therefore engage in the "risky" behavior of eating things that are processed in the same facility or on the same lines as gluten products. Others on here would not dream of doing that.

[mr. moore]

  mushroom said:

ppm = parts per million! But I think in the U.S. the standard is 20 ppm. The Codex Alimentarius in the UK permits them to include 200 ppm, as I understand it, which would probably be enough to set most people off from my point of view.

But I am not one of the more sensitive ones to tiny amounts and therefore engage in the "risky" behavior of eating things that are processed in the same facility or on the same lines as gluten products. Others on here would not dream of doing that.

but i thought it doesn't matter even the tiniest amount can take me back to square one! right?

[mushroom]

  mr. moore said:

but i thought it doesn't matter even the tiniest amount can take me back to square one! right?

Not back to square one, exactly. Certainly gluten is to be avoided entirely to the best of one's ability, but even if you get accidentally glutened, while you will suffer and do some additional damage, you will not go all the way back to square one. What I was saying in my clumsy way was that different people have different sensitivities and food processors are allowed to claim gluten-free status in the U.S. for foods that contain less than 20 ppm. Some people will react even to these, others will not. Some are afraid to walk down the flour aisle in the supermarket; others are not that sensitive. You will have to determine your own level of sensitivity.