Promethius Test Negative?

[mandypetty]

If someone's genetic test from Promethius came back negative, does that mean it is impossible for them to have Celiac disease?

[beachbirdie]

If someone's genetic test from Promethius came back negative, does that mean it is impossible for them to have Celiac disease?

I'm not the expert on this, but it's not necessarily impossible. I believe the Prometheus testing shows your DQ2 and DQ8, there are also people with celiac who have neither. In Europe, if I recall correctly, they use the DQ1 as a celiac marker, and there is some thinking that even DQ7 might be involved. In the USA I think the DQ1 would be used to say you have "non-celiac gluten sensitivity". That doesn't sound very ominous, but being gluten-sensitive is still no fun and impacts your health.

Have you had any blood testing to go along with your gene test?

Hopefully someone more knowledgeable will be along to give a more complete answer.

[nora-n]

about 2% have other genes! I have also posted on this here on other threads.

[mandypetty]

I'm not the expert on this, but it's not necessarily impossible. I believe the Prometheus testing shows your DQ2 and DQ8, there are also people with celiac who have neither. In Europe, if I recall correctly, they use the DQ1 as a celiac marker, and there is some thinking that even DQ7 might be involved. In the USA I think the DQ1 would be used to say you have "non-celiac gluten sensitivity". That doesn't sound very ominous, but being gluten-sensitive is still no fun and impacts your health.

Have you had any blood testing to go along with your gene test?

Hopefully someone more knowledgeable will be along to give a more complete answer.

Thank you.

I have not had a blood test because I started eating gluten free before I considered testing. Therefore from what I understand a blood test would come back negative regardless.

It makes me sick when I eat it so that's a good enough reason for me to stay away from it. I was just curious how it's possible for me to have such a strong reaction to it if the test was negative.

[beachbirdie]

Thank you.

I have not had a blood test because I started eating gluten free before I considered testing. Therefore from what I understand a blood test would come back negative regardless.

It makes me sick when I eat it so that's a good enough reason for me to stay away from it. I was just curious how it's possible for me to have such a strong reaction to it if the test was negative.

Sorry I missed your note. It is definitely possible to be celiac without the two main genes, as nora said. I think in Europe they are using DQ1 as a diagnostic marker.

Not to mention, even if you are not celiac, you could very well be "non-celiac gluten intolerant." That is a very real condition, it means gluten makes you really sick, but without the damage to the intestinal villi.

If you stay well on gluten-free diet, and have the will to stick with it, a diagnosis is not critical.

That's one good thing about this disease, you don't need a prescription for the gluten-free diet.

[Skylark]

I have not had a blood test because I started eating gluten free before I considered testing. Therefore from what I understand a blood test would come back negative regardless.

It makes me sick when I eat it so that's a good enough reason for me to stay away from it. I was just curious how it's possible for me to have such a strong reaction to it if the test was negative.

You are more likely gluten intolerant, though as Nora says a negative genetic test does not rule out celiac. Dr. Fasano at University of Maryland says gluten-intolerant people can actually have stronger reactions to gluten than celiacs.