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How Much Is A Dna Test For celiac disease

gigantor98

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gigantor98 Apprentice
gigantor98
Posted

I am a 32 year old mother, who has just been recently diagnosed with celiac disease. I have 3 kids ranging from 7 to 2. My 2 year got a stomach bug back in Sept. that lasted a week. Since than she throws up once every two weeks and complains of belly pain. I have taken her to our family doc.who knows about my problem and I asked if this could be her problem. He said it could but more than likely it was a lactose problem and not celiac disease. Since Sept she was put into the hospital for diahyration for 4 days. So family doc sends us to a allergy specialist, whom did not have a clue as to what I was talking about until he looked it up in med journal book.

His response was that it is a 1 and 10,000 chance that she could have this but he did order a blood test for celiac disease and a milk rash test. I will not have results on this for another week. Inbetween time I am finding out more about this disease and that it is more likely that 1 in 137 people have this???? I will be getting my other 2 kids tested but I was wanting to know about a DNA test for all of them and does Insurance companies pay for this? How much is the test. Should I get DNA test done before celiac disease test or how does that work.

I am from a rural area that mostly consist of German and Irish American people. Now I have both mixes in me and I am as hard headed as a German and fighting mad as a Irishman. So is this just my make up when the doctors around here look at me like I am stupid or is this just part of it. I have even found out that our local Hosptial is not even equipt to handle celiac disease patients in their food that is brought to them in their rooms. The dietation for this local hospital thinks that it is ok for celiac disease's to have whole grain brain muffins b/c they are whole grain. This terrifies me b/c after the year that we have had and I and my 2 year has had to spend some time in the hospital, I am affraid they will kill us before we get better.

If some one could answer some of this questions I would be greatful!

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*lee-lee* Enthusiast
*lee-lee*
Posted

hello and welcome to the board!

it's a good idea for your kids to be tested if you have a positive diagnosis. it's certainly not uncommon for doctors to be less than knowledgeable about Celiac. sometimes you have to give them a little push in the right direction. just don't let them dismiss your concerns. that's when it's time for a new doctor. a friend of mine just had to insist on the blood test and the doctor was a bit sheepish when she informed her it came back positive. still, the doctor doesn't see the need for a biopsy... <_<

anyway, your first step should be a full Celiac panel for your kids. it's possible they may have the gene(s) but not active Celiac. if their antibodies aren't elevated, you shouldn't worry too much. there is a chance they could develop it later in life but they can continue eating gluten for now. you should get them tested regularly though. of course, you can opt for a genetic test just so you know, if you choose.

as far as your insurance company goes...you should call them to confirm. some insurances cover genetic testing...others don't. my insurance company at the time was nearly useless - i couldn't ever get a straight answer from them so someone suggested i request the lab get a pre-authorization before the test was run. basically they submit a mock bill and see what gets approved and what is left for me to pay out of pocket. you might consider trying that.

there is a discussion somewhere on this board about nationalities in people with Celiac. personally, i'm German, Irish and Scottish and my grandmother who was diagnosed many years ago is very Irish. i don't think it's a coincidence...

gigantor98 Apprentice
gigantor98
Posted
  • Author

Thank you so much this calms me down a little. I get a little worried when it comes to my kids. They can kick me around the block a few times but not my kids. I do not want this for them but I do not want them going through what I have been through just to find out what was going on with me. I will call my ins. they are usually good about giving me that info I just did not know what would be the best thing.

I just wished now that I paid attention to all those stories that my German grandmother and Irish grandfather use to tell me about where they came from and who else was kind to them. They are not here anymore to ask and I almost feel like an adopted child, not knowing what all my family medical history is about. But one thing is for sure my kids will know and so will there children and so on. I will not be silent on this b/c to much is at stake.

4getgluten Rookie
4getgluten
Posted

You are doing the right thing. You are the best advocate for your kids

Marie2375 Newbie
Marie2375
Posted

We just had 2 of our 3 boys tested. The other will be tested in January. We used the Celiac PLUS test from Prometheus. If you do that test directly through Prometheus, it costs $799. Our GI has some sort of contract with our insurance so that if our GI does the blood draw, the insurance will pay for some of test. The Celiac Plus is the standard Celiac panel plus the gene test.

For one son, the GI sent the entire test to Prometheus. It looks like we will be paying $260 out of pocket for his test.

For the other son, they sent the Celiac panel to Quest labs and the gene test part to Prometheus. It looks like we will pay $91 out of pocket to Prometheus and about $25 out of pocket to Quest. I am not sure why they split this son's test. Maybe they did it because he was having some other blood tests done through Quest. The other son was only getting the Celiac Plus.

We had to get the blood drawn by our Pediatric GI. If the blood draw had been done by our regular pediatrician, our insurance was not going to cover it.

So, the short answer is that it depends on your insurance, your doctor and what lab you use.

*lee-lee* Enthusiast
*lee-lee*
Posted
So, the short answer is that it depends on your insurance, your doctor and what lab you use.

this is so true. i used Prometheus Labs. i had to have my blood drawn at one specific hospital lab with a certain work order from my GI. i was in the process of moving at the time and had to plan everything around when i'd be in town and be able to make an appt at that hospital. the only thing i had to pay was my $25 co-pay to have the blood drawn. everything else was covered by my insurance. i have no idea what the actual cost was but i'm guessing it wasn't cheap.

Country Girl Newbie
Country Girl
Posted

We had our son tested through a hospital and used promethesis. Insurance covered the entire cost and the negotiated rate that was paid was $385.

From a healthcare professional, know that if your insurance will not cover it and you choose to pay out of pocket you should know that everything in healthcare is negotiable. Call the lab company and try to work out a deal for a cheaper rate.

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  • 3 weeks later...
clydeshannon5 Rookie
clydeshannon5
Posted

I am not sure where your doc got the figures of 1 in 10,000 for your child to have celiac, but the University of Chicago Celiac Center gives the figure of 1 in 22 with an immediate family member with the disease. Their website is helpful on obtaining the genetic saliva swab test.

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I would very much go and get your whole family tested. Good luck

shannon

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