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My 0301 Gene Friends

confused

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confused Community Regular
confused
Posted

Ok you all know how i have benn researching celiac genes. Well i emailed enterolab about my thoughts and ideas of 0301 and this is what they told me.

Response: Dear Paula, Thank you for your correspondence. We actually have all of our DQ3 gene results checked for ambiguities when they are being run initially, so there is very little chance that the result is incorrect. It is quite possible to test positive for Celiac Disease with an 0301 gene and without a DQ2 or DQ8. The 0301 also sometimes acts like a Celiac gene, according to Dr. Fine's research. Please let me know if I can be of further assistance. Sincerely, Phyllis Zermeno, RN, BSN Clinical Manager

What do you all think?

Does this just prove that there are more genes that are celiac?

Or does this mean many of us with 0301 do indeed have celiac?

paula

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Ursa Major Collaborator
Ursa Major
Posted

Serious researchers have said for years that they have only found two celiac disease genes this far, but there are likely more. For any doctors to claim that you can't have celiac disease unless you have the DQ2 or DQ8 is just ignorance on their part.

You can absolutely have celiac disease with genes other than the ones officially recognized at this point.

pedro Explorer
pedro
Posted

Hi Paula

Thats exactly what they told me yesterday when I called EnterLabs.

This is very interesting.

Ursa I agree.

Does anyone knows of any ungoing research on this matter?????

Pedro

Nancym Enthusiast
Nancym
Posted

Only something like 50% of the human genome has been figured out (as to what they do). There are some new recent advances though that should be turning up some very interesting things.

What's going to be even more interesting is proteinomics, that is discovering the proteins that these genes code for. :P

nora-n Rookie
nora-n
Posted

I have seen several articles which have been accepted in peer-revieved publications, by Dr. Hadjivassiliou, that 20% of the gluten ataxia patients (who also had Ttg andtibodies and some other immunological markers bedause of gluten) have DQ1.

And there is something about DQ7 too some other places.

Open Original Shared Link here is something about DQ9 and celiac.

see also Open Original Shared Link

nora

lonewolf Collaborator
lonewolf
Posted

I'm a bit ignorant of all the gene information, so please excuse me. My son has double DQ3, subtype 7. Is this the same as DQ7? (I think it is.) I also have at least one copy of this gene, but don't know what my other one is.

My son's main symptoms are behavioral - teacher wanted him tested for ADD, he went gluten-free and now is an honor student in middle school. He's like Jekyl and Hyde - we ALWAYS know when he's eaten gluten by his behavior. He also has some GI issues - mostly constipation and horrible gas.

I had GI issues (IBS), arthritis (gone now), hypothyroid (actually getting better), still have psoriasis and have a kidney disease that's completely in remission.

It always frustrates me when I read that I can't possibly have Celiac Disease because I don't have DQ2 or 8. I'm "only" gluten intolerant, which in no way describes the severity of symptoms I have when I eat gluten.

Gentleheart Enthusiast
Gentleheart
Posted
Hi Paula

Thats exactly what they told me yesterday when I called EnterLabs.

This is very interesting.

Ursa I agree.

Does anyone knows of any ungoing research on this matter?????

Pedro

I personally think the reason the research is slow in coming is because there just isn't a lot of money to be made. Except for the discovery of a wonder drug that will honestly shut off the gluten intolerant gene without worse side effects, we celiacs aren't customers for much else once we have ourselves under control. The big drug and medical money demands projects that will give them a return on their investments. Government money tends to favor the established medical protocols.

Anyone who dares study us outside the box has to just plain care about all of us whether they make any money from it or not. And those kind souls are hard to find.

Even Dr. Fine is frequently criticized and scrutinized for running a lab that 'charges' for tests at the same time he is doing his studies. I suspect much of the money goes back into his research and all the sample results are necessary for data. If the guy makes a few bucks on the side for his brilliance, I think he deserves it.

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AndreaB Contributor
AndreaB
Posted

If the DQ7 turns out to be one of the celiac genes than my family is all double celiac genes. I have the DQ7 and so does my daughter....along with a celiac gene.

nora-n Rookie
nora-n
Posted

About the research: I am in the country of the reseachers Lundin and Sollid (they were at the New York Conference last fall). I was gene tested at their lab. They reused to tell me which DQ type I had, only answered DQ2 and DQ8 negative. I phoned the lab and a lasy answerd that they maybe could tell if I am DQ3, but to ask my doctor to contact them (which of course means they can tell me more or she would have told me tehy can't) wrote back to doctor and printed out some stufffrom the net, but when I had been there before, he pulled out the article b y Lundin where he goes into detail about DQ2 and 8 and telles me that I cannot be celiac unless I am DQ2 or 8. He obviously has not read any other stuff...

All the money from the research here came from the celiac sosiety and they gor it from the money the lottey company has to give away. I have seen all the numbers. It is not very much, but probably only enough for DQ2 and DQ8.....

Here is another abstract about non-DQ2 or 8:

Open Original Shared Link

Maybe the Japanese will do some research as DQ2 is very rare there.

"In addition to celiac disease, several studies have shown that the DQ8, and to a lesser extent the DQ2, allele is linked to the occurrence of particular autoimmune diseases such as rheumatoid arthritis and juvenile (type 1) diabetes mellitus (14

confused Community Regular
confused
Posted
  • Author

Thanks for all the information that has been presented here. I find it all fascniating and makes me want to keep looking for more information.

I sit here and think will we ever have an definite answer to what genes are linked to celiac, or are many just going to be tested for 2 and 8, and think cause they dont have those genes that they are fine, when in fact they do have an gene for celiac. Are people going to have to go 20m 30, 50 more years without being diagnosed cause doctors say they dont have either of the 2 genes. I just sit here and think how many people have been tested, not had the gene and are still eating gluten and killing themselves. It just makes me so mad.

paula

nora-n Rookie
nora-n
Posted

My daughter refused the gene test, and got a diagnosis because of the dictinct symptoms and the drastic improvement off gluten. even her graves antibodies just disappeared after going gluten-free. (but the TPO antibodies did not).

I did test negative for DQ2 or 8, so might she...she might not have gotten a diagnosis if she would have accepted the gene test and tested negative too......It would have been IBS or allergy or something.

we must have one or more of the other gluten-sensitive genes (which are really anything besides DQ4, which is only found in the far east and in Southern Africa anyway....)

nora

dlp252 Apprentice
dlp252
Posted

Well, if DQ7 is also Celiac, then I have to be extra careful, lol. I have DQ8 and DQ7. I planned to stay off gluten for life anyway, but was hoping that I would some day be able to be less concerned about cross contamination issues once the other major health factors were taken care of and my gut had a chance to heal.

Nantzie Collaborator
Nantzie
Posted

That would also mean that both my kids and my husband, and a bunch of people in his family, would have it too.

I've got two copies of DQ1, subtype 6 (0602 and 0609).

My kids have one each of my genes - daughter has 0609 and son has 0602, plus they both have the 0301, which has made me wonder if my husband has two copies of 0301.

I think it won't be too long (as in within a decade) until DQ3 and DQ1 are considered celiac genes. It wouldn't take a researcher more than a week of visiting here to determine that there is strong evidence to support that, but we all know how slowly these things go.

I think that once the Genetic Information Non-Descrimination Act is passed, Open Original Shared Link a lot of us will feel more comfortable coming forward to doctors and researchers with information and personal experience based on our gene types.

Nancy

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