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Celiac Genetic Testing?


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#1 cdaviles

 
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Posted 14 November 2012 - 11:28 AM

My doctor is sending me to get blood work done. He doesn't want me to start eating gluten in order to see if I have celiac disease, so he's just sending me out to get the celiac genetic test. He didn't really explain it well though... What exactly does this exam do? What is it testing for? It won't tell me if I have celiac or not, right? Just if I'm genetically predisposed?
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#2 megsybeth

 
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Posted 15 November 2012 - 03:53 PM

Hi Cdaviles, Why are you gluten free in the first place? The genetic testing is useful to possibly rule out celiac (though some have celiac with atypical genes, it is very rare). But I think 1/3 of all people, with celiac or not, have those genes. Unfortunately the genetic testing can be misused. For example, my son's pediatric GI was very anti-celiac for some reason and even after I was confirmed celiac she felt my son's DQ2 subtype made it virtually impossible for him to be celiac because the prometheus report put his odds at less than one times higher than the general population. I also have that "unlikely" single gene.

I've learned in my short experience with this disease that many doctors focus very intently on ruling out celiac. A patient can stand in front of them looking like a textbook celiac sufferer and they find some reason not to want to dx.
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#3 mushroom

 
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Posted 15 November 2012 - 07:31 PM

I've learned in my short experience with this disease that many doctors focus very intently on ruling out celiac. A patient can stand in front of them looking like a textbook celiac sufferer and they find some reason not to want to dx.


Isn't that the truth??!!!! You would think they were getting a kickback from Big Pharma for every time they failed to diagnose celiac. I know, it doesn't make sense; maybe just the realization of the patronage they are losing by your not needing to come back to have scrips refilled, not to mention the potential development of other auto-immune diseases (you can hear them licking their chops, here, at the potential involved in some of these diseases :lol: )

No, sorry to the OP :( , I am being much too cynical here on a very real problem. The genetic testing is not really going to provide you with much useful information, but it could say to the doctor (who undoubtedly does not believe in any celiac genes other than DQ2 and DQ8), aha, you cannot have celiac disease. Therefore, I am going to prescribe x and y and z for your IBS or whatever he decides you might have, and you will need to come back and see me in a month for follow-up, at which point I might test you some more for something else.....

You see, there are two major genes recognized as predisposing to celiac disease, and if you don't have either one, well then you can't have it, can you??? is the way the thinking goes. Just today on the forum, Ravenwoodglass posted that she found an old copy of a celiac blood test which shows she tested positive for AGA IgA (although her doctor told her it was negative). She had the celiac genetic test and didn't have either DQ2 or DQ8, and went undiagnosed for a further ten years of suffering and was seriously impaired and to this day, to a great degree, remains so. Hers was a classic case of the genetics being used against her.

You must decide for yourself what you hope to learn from this test. Unless your parents, other siblings, your offspring are also going to be tested for the genes, no pattern will emerge on genetic inheritance. So perhaps you need to ask him the purpose of the test. :)
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Neroli


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#4 megsybeth

 
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Posted 15 November 2012 - 08:38 PM

Mushroom, my son's GI, just two days ago, tried to put him on zantac! And then she said, "Well the only problem is that it might cause a little diarrhea.". He's underweight, he's four, he still wears some clothes that are sized 18 MONTHS, he's had diarrhea since August. He doesn't have any acid reflux signs but he does have a mother with celiac and a strong positive DGP IGA. And no, I'm not going to give him something that causes diarrhea for a problem he doesn't have!
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#5 mushroom

 
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Posted 15 November 2012 - 09:09 PM

Mushroom, my son's GI, just two days ago, tried to put him on zantac! And then she said, "Well the only problem is that it might cause a little diarrhea.". He's underweight, he's four, he still wears some clothes that are sized 18 MONTHS, he's had diarrhea since August. He doesn't have any acid reflux signs but he does have a mother with celiac and a strong positive DGP IGA. And no, I'm not going to give him something that causes diarrhea for a problem he doesn't have!


Did she specify what the zantac was supposed to do for him?? :unsure: (rather than TO him).
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 shadowicewolf

 
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Posted 15 November 2012 - 09:29 PM

Mushroom, my son's GI, just two days ago, tried to put him on zantac! And then she said, "Well the only problem is that it might cause a little diarrhea.". He's underweight, he's four, he still wears some clothes that are sized 18 MONTHS, he's had diarrhea since August. He doesn't have any acid reflux signs but he does have a mother with celiac and a strong positive DGP IGA. And no, I'm not going to give him something that causes diarrhea for a problem he doesn't have!


I wore toddler clothes until i was in first or second grade (so 6 or 7 years old).

I agree don't give him the zantac. That stuff is nasty to deal with.

zantac generally reduces the amount of acid in the stomach and helps with GERD issues. If he has tummy troubles outside of the "D" then that might have been why the GI wanted to perscribe it. Before i got sick i was told to take it every evening to be able to eat in the morning (would wake up with terrible upset stomach, didn't help though).

Genetic tests are useful. I have both genes DQ2 and DQ8 along with a positive IGA TTG (other issues that were related to this were ruled out i believe), negative biopsy (4 weeks gluten free before though) and the rest of the blood panel was negative. ALl my other issues cleared up on the diet.

In this case (and i've had a doctor tell me yes while my GI says intolerence) i believe i do have it (or at least caught it before it could do major damage?).
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