Cost of celiac gene test

[lolabelle]

Hello! My daughters GI doctor has ordered the celiac gene test for her after having a positive and very high Ttg iga and Ema. Has anyone had this done and might know about what it costs? Our insurance doesn't cover it. Thanks in advance! 

[kareng]

$300-400.  You can call the local labs, like Quest and ask before you have it.

[Judy3]

Yeah $300 - 400 but well worth it because it tells the tale.  If she has the DQ2 or DQ8 gene with the highs on the other tests.  She has Celiac.   You can have Celiac unless you have one of these genes.  If you don't it could be gluten sensitivity which has the same symptoms but doesn't cause the damage of Celiac.  

[ravenwoodglass]

With positive blood work she has celiac.  If the gene testing is going to be a strain on your budget personally I would forgo it. There is also the VERY rare chance that she could be in the small percentage of celiacs that don't carry one of the most common associated genes.

[GFinDC]

Your doctor should be able to to you the cost of the test.  He/she is basically selling you a service and is obligated to reveal the price of that service.

I agree, having the high blood antibodies means she has celiac disease.  Some doctors also order an endoscopy with biopsy samples of the small intestine.  Some accept only the antibody results as proof.

If she has celiac, she got the genes from one or both parents.  So either parent or other siblings may have the genes also and may have or develop celiac disease.

[kareng]

37 minutes ago, GFinDC said:

Your doctor should be able to to you the cost of the test.  He/she is basically selling you a service and is obligated to reveal the price of that service.

I agree, having the high blood antibodies means she has celiac disease.  Some doctors also order an endoscopy with biopsy samples of the small intestine.  Some accept only the antibody results as proof.

If she has celiac, she got the genes from one or both parents.  So either parent or other siblings may have the genes also and may have or develop celiac disease.

I don't think the doctor would know what a lab charges for something that he/she rarely orders.  The doctor isn't "selling" you something.  They don't get a commission on labs tests.  The doc may have the blood drawn in his office, and the office would charge a fee for that.    If he isn't getting blood for anything else, he/she might just send you to Quest to get it done.  I think they charge about $20 if they have to draw the blood.  But, its easy to call and ask.

[lolabelle]

Thank you everyone! The nurse tried to find out for us, but was unable to. She guessed around $400-$500 which I'm ok with, just didn't want anything much more. They ordered the endoscopy but we are holding off on it for now. No one in our family has celiac that we know of ( I got tested because I have many symptoms as well) Might try calling the lab also. 

[frieze]

with positive blood tests why are you bothering, i could think of many things to spend that money on.

[lolabelle]

I could think of many other things too, but my daughters health comes first. Her dr would like to do an endoscopy and colonoscopy and we're checking everything to avoid doing that. Also no one in our family has celiac so the gene test will be helpful in this case.

[frieze]

8 hours ago, lolabelle said:

I could think of many other things too, but my daughters health comes first. Her dr would like to do an endoscopy and colonoscopy and we're checking everything to avoid doing that. Also no one in our family has celiac so the gene test will be helpful in this case.

as Raven has said, not all celiacs have one of those genes, the test is not particularly helpful.  why are you trying to avoid the "gold standard" endo?

[CherylS]

I received the bill today for my celiac gene test that was performed on 11/19/15.

 

CPT 81376 HLA CSII LOW RES ONE LOCC 99.96

CPT 81382 HLA CLSII HIGH RES ONE LO 108.12

VENIPUNCTURE 30.41

INSURANCE DISCOUNT 34.73

I have Anthem insurance, this was performed by Compunet in Ohio, my total was $203.76.

They checked for HLA DQ2 and HLA DQ8.  I was afraid it was going to cost over $500.

[jbeilfuss]

Hello Iolabelle,

I'm just curious on why you would favor getting the genetic test over the endoscopy when the latter provides the "gold standard" diagnosis.  It was not painful and at least speaking for myself, it was nice to get a definitive diagnosis.  

[Prash]

On ‎17‎/‎12‎/‎2015 at 2:16 AM, lolabelle said:

Hello! My daughters GI doctor has ordered the celiac gene test for her after having a positive and very high Ttg iga and Ema. Has anyone had this done and might know about what it costs? Our insurance doesn't cover it. Thanks in advance! 

I got it done through "genetrack" ( a Canadian company ). I live in the UK. It cost me 250 GBP. They send three swabs for saliva test. You run your inside cheek (one each side), then place it in the envelope provided, let it dry for 1 hour, then seal it and post it back either by recorded post or normal or courier.  I sent it back recorded from UK to Canada for 8 GBP.

So overall you are looking at 260 GBP. It will take a month from order to delivery ( 4-5 days for swabs to arrive, sending back to Canada in 5 days, then they take 14 days for testing). Results are sent back by email and post (depending upon what you selected).

 

Order status can be tracked online.  I was DQ2 and Homozygous HLA-DQB1*02 positive placing me in second highest risk category (1:10).

 

 

 

 

[Prash]

3 hours ago, jbeilfuss said:

Hello Iolabelle,

I'm just curious on why you would favor getting the genetic test over the endoscopy when the latter provides the "gold standard" diagnosis.  It was not painful and at least speaking for myself, it was nice to get a definitive diagnosis.  

OP may have already started gluten free like me. Or the OP may only want to check his/her predisposition to celiac (to rule it out). If you don't have the gene, you can't be a celiac. It safely rules it out.

 

 

[frieze]

15 hours ago, Prash said:

OP may have already started gluten free like me. Or the OP may only want to check his/her predisposition to celiac (to rule it out). If you don't have the gene, you can't be a celiac. It safely rules it out.

 

 

those two genes cover about 97% of celiacs, so it is possible to have celiac without those genes.