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Cost Of Celiac Genetic Test?


hazelnutty42

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hazelnutty42 Rookie

If you've looked into this test, did your insurance cover it? If not, what was the cost out of pocket? Just curious. If my biopsy confirms Celiac I want both of my kids to have the genetic test. Thanks!

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kareng Grand Master

I forget what it cost. You can call Quest Diagnostics and they will tell you. My doctor ordered it and insurance paid without a peep.

Edit- looked back at my old posts - it was about $260 from Quest about a year ago

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StephanieL Enthusiast

If you have it, the kids chance of having the gene is fairly high so I'm not sure I would spend the money on doing it if your insurance doesn't cover it.  We were told not to bother with the younger sibs because of the same reason.  It isn't diagnostic so it won't really help for anything other than curiosity.

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SMRI Collaborator

The gene testing really won't tell you much but you should have the kids testes for the IgA, IgG tests.  It's likely they will have one or more gene but that doesn't mean they are Celiac.  If you are going to spend the money, spend it on the other testing first.  

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kareng Grand Master

I just did my test for fun. I wanted to know how many genes I had so I could kind of, un scientifically, see what my boys chances are. I was happily surprised that my insurance paid for it. I did not have my boys tested because I didn't want that in their medical records as it could limit their career choices and perhaps be a " pre-existing" condition some day.

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Noobette Apprentice

23andme testing is $99. It takes a lot of figuring out, but I was able to determine that I carry both HLA-Dq2.5 and HLA-Dq8.

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kareng Grand Master

I would be careful with the 23 and me testing. They have had some legal issues.

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ezgoindude Explorer

I live in Arizona, I was at the time I was still a dependent under united health care with my parents.  The HLA genetic marker test was through Labcorp,  I only paid $28.73 with my parents insurance,  the original bill showed $750.00.

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hazelnutty42 Rookie

Thanks everyone. I was thinking the genetic test because I know my kids don't currently have celiac. They are 7 and 9. So a TTG IgA would be useless right? I don't need to confirm a diagnosis, but was under the impression the gene would let us know that we have it coming up. 

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kareng Grand Master

The gene just means you can get it. But, about 30% of people have a Celiac gene.... And they think about 1% have celiac. So, all it would do is rule it out.

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"Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the sight of symptoms. ..."

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StephanieL Enthusiast

Any first degree relatives should be tested every 3 years OR if they have symptoms.  Theres no way to know for sure they don't currently have it unless they are tested.

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BlessedMommy Rising Star

Yes, they need to be tested. Celiac can be asymptomatic, so there's no way to be sure that they don't currently have it, without testing them.

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GottaSki Mentor

My celiac doc tested me when initial celiac panels for my then 13 and 15 year olds came up neg with numberous symptoms. I'm double plus one. Couple years later the older one had genetic test when he was unsure of status....he too is double plus one...which means my non celiac husband carries at least one pesky DQ2....possibly a DQ8.

Sorry..original poster asked cost. When doctor ordered it is covered. Our coverage changed a bit .. So we did pay copayment with my son's test.

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GottaSki Mentor

Thanks everyone. I was thinking the genetic test because I know my kids don't currently have celiac. They are 7 and 9. So a TTG IgA would be useless right? I don't need to confirm a diagnosis, but was under the impression the gene would let us know that we have it coming up.

They should have a complete celiac antibody panel every three years. Symptoms are numerous and at times vague. First degree relatives should always be tested every three years..more often if symptoms present.

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frieze Community Regular

mostly because they (23 and me) were cutting into others revenue stream.....

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SMRI Collaborator

Thanks everyone. I was thinking the genetic test because I know my kids don't currently have celiac. They are 7 and 9. So a TTG IgA would be useless right? I don't need to confirm a diagnosis, but was under the impression the gene would let us know that we have it coming up. 

 

How do you know they do not have Celiac?  They could just not be symptomatic yet.  My nice was tested as an add on to other testing and her TGG Iga was 130 with no symptoms at all.  She was also biopsy positive.  The gene testing is pretty much useless without the TTG IgA, IgG testing and perhaps biopsies.  I would get both kids tested for the TGG tests and then go from there.

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hazelnutty42 Rookie

Thanks! This is helpful. I'll wait for my biopsy results and def have them tested based on that. This forum is very helpful. Thank you! 

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RMJ Mentor

The idea of doing genetic testing of relatives is to rule out Celiac. If ruled out, that's it, no more testing. If it is not ruled out, antibody testing every few years.

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StephanieL Enthusiast

The idea of doing genetic testing of relatives is to rule out Celiac. If ruled out, that's it, not more testing. If it is not ruled out, antibody testing every few years.

Drawing the genetics WITH the panel would be one thing but to do just the genetics means if it's + it'll still require another draw. Also many insurance companies won't do the genetics without the panel first.  Lastly, if a parent has Celiac, the chances of a kid having the gene is pretty high which doesn't tell ya much but that there is a predisposition.

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