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Jnkmnky

Is It 1/133 Have celiac disease And 1/90 Have Gluten Sensitivity?

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Is the sensitivity the inherited gene? I'm neg for all things, but seriously can't have gluten and the longer I'm off it, the worse the symptoms of what was once a bit of gluten here and there. But I'm NEGATIVE. I'm confused. My son has the celiac disease. My other two kids are neg all around. I've read Dangerous Grains, I've done lots of other reading, but I'm getting confused anyway. Sorry if the answer is obvious. :blink:

You may not have what is now proven to be the celiac genes. Or the sensitivity genes. There may be other genes involved in this disease that haven't been recognized or marked. And don't ever be sorry for being confused. Even the learned medical community doesn't agree!!!! How are we as lay people supposed to know?

You're listening to your body and taking care of it and your children's needs. That's the most important.

Annette

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Guest nini

I think that there are far more people that are gluten sensitive AND celiac than are even remotely considered at this point.

I'm convinced that the epidemic of disease in this country is directly in relation to the prevalence of gluten in practically EVERYTHING.

As you've read in Dangerous Grains, wheat is toxic. Humans aren't designed to digest it. It's Poison period. Only some of us are the proverbial "canary in a coalmine" and we are reacting to it in much more obvious and detectable ways.

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I'm neg for all things, but seriously can't have gluten and the longer I'm off it, the worse the symptoms of what was once a bit of gluten here and there. But I'm NEGATIVE.

Well I agree with everything Nini wrote but was just wondering....what tests did you have done? You could always do Enterolab but obviously your son got his genes from someone. Did you have gene testing done? IgA deficiency?

Btw...cool avatar...thats gotta be my favorite so far. Like the new quote too. Is this what you were busy doing when you missed all the action? :P

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As far as I know, Prometius only does the blood tests, it doesn't do the DNA tests. I think it just does this panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue

Transglutaminase (tTG) IgA

Total Serum IgA

That isn't going to tell you if you have the genes for gluten intolerance or celiac, even the few that have already been identified.

With the celiac tests, there really is no such thing as a completely negative test - there's only NOT POSITIVE tests. If the damage is minor, the test will not be possitive. If a person is not reactive, the test will not be positive. That doesn't mean it's negative, it just mens that it's not positive. Even the biopsy can't rule OUT celiac, it can only rule it in.

Think of it this way (I'm slowly turning grey, so this makes lots of sense to me.)

As you start to age, your hair will start turning grey. You might start seeing one or two gray hairs, especially if you have dark hair to start with. A year or so later, there are more. It takes several years, maybe a decade or more, for all the hair to turn grey. If during the first year or two, you closed your eyes, so you couldn't see where the grey hairs were, and just randomly plucked a couple of hairs from your head, your chance of getting a grey one would be pretty slight. After 5 years, you might have a better chance of getting a grey hair, but you could still easily get all dark hairs. It might take many years before there are enough grey hairs that you are pretty sure of getting one.

We have millions of villi in our bodies. Even if a few are damaged, it might not show out of the normal range on tests. It can often take many, many years before sufficient villi are damaged to give positive results on the tests. But there are still damaged villi, and there is still damage being done to your body, just like there are still grey hairs if you look for them.

Debbie

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As far as I know, Prometius only does the blood tests, it doesn't do the DNA tests. I think it just does this panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue

Transglutaminase (tTG) IgA

Total Serum IgA

That isn't going to tell you if you have the genes for gluten intolerance or celiac, even the few that have already been identified.

With the celiac tests, there really is no such thing as a completely negative test - there's only NOT POSITIVE tests. If the damage is minor, the test will not be possitive. If a person is not reactive, the test will not be positive. That doesn't mean it's negative, it just mens that it's not positive. Even the biopsy can't rule OUT celiac, it can only rule it in.

Think of it this way (I'm slowly turning grey, so this makes lots of sense to me.)

As you start to age, your hair will start turning grey. You might start seeing one or two gray hairs, especially if you have dark hair to start with. A year or so later, there are more. It takes several years, maybe a decade or more, for all the hair to turn grey. If during the first year or two, you closed your eyes, so you couldn't see where the grey hairs were, and just randomly plucked a couple of hairs from your head, your chance of getting a grey one would be pretty slight. After 5 years, you might have a better chance of getting a grey hair, but you could still easily get all dark hairs. It might take many years before there are enough grey hairs that you are pretty sure of getting one.

We have millions of villi in our bodies. Even if a few are damaged, it might not show out of the normal range on tests. It can often take many, many years before sufficient villi are damaged to give positive results on the tests. But there are still damaged villi, and there is still damage being done to your body, just like there are still grey hairs if you look for them.

Debbie

Prometheus does do the DNA tests but only for the 2 main genes of celiac(the DQ2 and DQ8 genes)

All of the genes involving gluten sensitivity and celiac have not been identified so it is possible for gluten not to agree with you even when you do not have a gene that would say that. I believe it is more common than people believe. I have heard that 1 in 90 have celiac but that number ranges on which studies you look at..my guess is way more people have some degree of sensitivity to it. People have overused it for so long and it's coming back to bite us all in the butt.

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Is the sensitivity the inherited gene? I'm neg for all things, but seriously can't have gluten and the longer I'm off it, the worse the symptoms of what was once a bit of gluten here and there. But I'm NEGATIVE. I'm confused. My son has the celiac disease. My other two kids are neg all around. I've read Dangerous Grains, I've done lots of other reading, but I'm getting confused anyway. Sorry if the answer is obvious. :blink:

I probably won't be much help here because I'm as confused as anyone. I'm beginning to think no one truly understands this whole thing. I read that some doctors/researchers want to eliminate the term celiac disease and just call it all gluten sensitivity. They make it sound like gluten sensitivity CAN lead to celiac disease, which seems to be the defined villi damage. If there's no villi damage, then is it still in the category of gluten sensitivity? I myself tested with one gene for celiac and one for gluten sensitivity. So which one governs my current symptoms? I can't figure any of this out!

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