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Promethius Test Negative?


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5 replies to this topic

#1 mandypetty

 
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Posted 27 January 2012 - 12:13 PM

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

 
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Posted 27 January 2012 - 02:11 PM

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.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#3 nora_n

 
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Posted 28 January 2012 - 11:14 AM

about 2% have other genes! I have also posted on this here on other threads.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#4 mandypetty

 
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Posted 28 January 2012 - 01:09 PM

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.
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#5 beachbirdie

 
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Posted 28 March 2012 - 10:00 AM

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.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#6 Skylark

 
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Posted 28 March 2012 - 11:49 AM

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.
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