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Shocked! Don't Know What To Think?

lcarter

By lcarter
in Coping with Celiac Disease

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lcarter Contributor
lcarter
Posted

Help where do I go from here? I was really SHOCKED to see my Prometheus Gene Test results!!!! They said I do not have DQ2 or DQ8 genes, and have an "Extremely Low" chance of having celiac disease. So, I guess my doctors were wrong years ago when they thought I had celiac disease? Of course, this was before anyone knew what they were doing to test for celiac disease - I was diagnosed by an elimination diet and then a challenge. But, I am most definitely gluten intolerant! {the gluten-free diet has made a significant differences] Also, I have had a couple of ER visits with my small intestines almost swollen shut over the years. Now it looks like I will have to buckle under and go see another GI and let them scope me to see if it could be Inflammatory Bowel Disease [probably Crohn's] instead. 1:130 for celiac disease is a lot easier to believe, than 1:3,000 for Crohns. Please advise.

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Piccolo Apprentice
Piccolo
Posted

Help where do I go from here? I was really SHOCKED to see my Prometheus Gene Test results!!!! They said I do not have DQ2 or DQ8 genes, and have an "Extremely Low" chance of having celiac disease. So, I guess my doctors were wrong years ago when they thought I had celiac disease? Of course, this was before anyone knew what they were doing to test for celiac disease - I was diagnosed by an elimination diet and then a challenge. But, I am most definitely gluten intolerant! {the gluten-free diet has made a significant differences] Also, I have had a couple of ER visits with my small intestines almost swollen shut over the years. Now it looks like I will have to buckle under and go see another GI and let them scope me to see if it could be Inflammatory Bowel Disease [probably Crohn's] instead. 1:130 for celiac disease is a lot easier to believe, than 1:3,000 for Crohns. Please advise.

Hi and welcome,

It looks like you are part of us. I believe even if it is Crohn's or something similar the treatment is the same the gluten free diet. I am one of those gluten intolerant. The inflammation from gluten has done it number on me as I age.

Roda Rising Star
Roda
Posted

Your at least gluten intolerent it sounds. Just because you don't have the two common associated genes that are seen with celiac, doesn't mean you don't have it either.

ravenwoodglass Mentor
ravenwoodglass
Posted

There are more than just those genes associated with celiac. My DD was told after being both blood and biopsy diagnosed that she wasn't celiac and the other tests were wrong based solely on the fact that when tested a few years later for those genes that she didn't have celiac and never would. That prompted me to also test my genes and I found that I carry two copies of a gene that is considered celiac associated in other countries.

How are you doing? If the diet is helping then stay with it. If you still have issues it is possible to have other things going on independant of celiac but you wouldn't need to go back on gluten to be tested for anything other than celiac.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Scientists don't know all the genes associated with celiac (or GI), so there's no way to be sure if someone's got GI or celiac. What matters is if gluten makes you sick, you need to avoid it. The names are just semantics.

Your reactions to gluten are so serious and intestinal it makes me think you're proof there's more genes involved in celiac than the two biggies!

pricklypear1971 Community Regular
pricklypear1971
Posted

Did they report the genes they found?

My tests showed I have half a dq2, half a dq8- one other that is reported as a possible celiac gene, and one that is a bit of wild card....

So, you still may have genetic predisposition...research the reported genes.

The other thing - even though I have half genes they still reported it as "negative". Again, more reason to read the genes not the results.

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