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Antibody Testing Vs Gene Testing

bincongo

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bincongo Contributor
bincongo
Posted

I need an answer this week because my daughter is going to the doctor to have blood tests done at my insistance. I am Celiac and my sister has the gene and is probably Celiac. I am getting conflicting information about what to do. My daughter is not gluten free and she doesn't think she has any symptoms. She has always been underweight and had infertility problems. It took her 5 years to get pregnant and she is 8 months pregnant now.

Some say gene testing doesn't always show all the genes so why test but then if she gets the antibody testing done and she turns up negative it just means she doesn't have it now. So does she go in every year to have antibody testing done? Or does she wait for symptoms. I had few symptoms and not everyone does.

I don't know where to go with this. I also want to know if insurance pays for any of this and if so what are the codes for ordering tests.

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Emilushka Contributor
Emilushka
Posted

1) Gene testing doesn't show all the genes and would only prove a predisposition - which is added evidence, but not a diagnosis.

2) Antibody testing only works for some people and if it's negative once, I'm not sure you'd have an easy time getting insurance to cover it again. Out of pocket, the antibody testing I had done cost $300 at the lab with perhaps additional cost for the blood draw itself. They had to ship my blood to California in order to run the test. I don't know if that's the same for where you are.

3) Insurance may or may not cover it - you'd have to call and ask them specifically. I don't know the coding. Talk to your insurance company about the coverage and the billing and coding person at your family doctor's office to find out what the codes are.

4) I don't think anybody recommends annual antibody testing at this point. If the antibody test comes back negative and there's no indication to do scoping + biopsies to try to catch it that way, I think the best thing that people do is just try the gluten-free diet and see if it works for them. I think with the testing the way it is now, if you do the full range and nothing's positive, the last resort is really to just try assuming you have Celiac and see if that fixes your problems.

5) If you have no problems, without positive testing, I don't know how you'd be able to be diagnosed. But I still don't think anybody would recommend annual testing and I don't think there's likely to be insurance coverage for it. But check with your company.

bincongo Contributor
bincongo
Posted
  • Author

I am still confused. Do you recommend no testing at all? If my daughter has no symptoms now that she knows of then she is to wait until she feels sick to do any testing? I know the gene tells someone they can get Celiac but not that they will. I thought gene testing was recommended for children of a Celiac.

cassP Contributor
cassP
Posted

I am still confused. Do you recommend no testing at all? If my daughter has no symptoms now that she knows of then she is to wait until she feels sick to do any testing? I know the gene tells someone they can get Celiac but not that they will. I thought gene testing was recommended for children of a Celiac.

she's already 8 months pregnant???? so thats good then- we dont really have to worry about her pregnancy now, right- she's almost done...

i think she should get antibody tests now- should only be 1 or 2 vials.... a complete panel- since she's still eating gluten, and you've tried for so long to get her to do it- try to get them all: TTG Iga & Igg, Antigliadin Iga & Igg, Endomysial Antibody, and total Iga serum level.

she can always do the gene test later if she wants... my understanding is that our doctors ONLY test for DQ2 & DQ8 (even tho there's potentially 27 DQ genes that could possibly be linked as well).. but the docs DO test for the alpha & beta chains.

i did my test thru Enterolab.. they test for 9 DQ genes- but NOT both the Alpha & Beta... so either route may leave you with SOME answers or more questions... im happy i did mine

PLUS- your questions about waiting for symptoms- remember recent studies have suggested that maybe only 1 in 6 Celiacs may have gut symptoms...

Jestgar Rising Star
Jestgar
Posted

i think she should get antibody tests now-

I would say wait until she delivers. Pregnancy can do weird things to your immune system.

The gene test is not very useful. If you had no, or few symptoms, but had a positive scope, then your daughter might want to consider getting scoped. Wouldn't she want to be sure she's as healthy as she can be for her child?

cassP Contributor
cassP
Posted

I would say wait until she delivers. Pregnancy can do weird things to your immune system.

oh that makes sense... i never thought about pregnancy affecting the outcome of the tests

bincongo Contributor
bincongo
Posted
  • Author

It would be good to know if pregnancy can affect the outcome of any tests then she could wait until the baby is delivered. Does anyone know?

I am not sure that being scoped is the first option that doctors go to. I know it is the best way to diagnose but I would assume they would first want to do gene or antibioty testing and in what order I don't know.

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cassP Contributor
cassP
Posted

It would be good to know if pregnancy can affect the outcome of any tests then she could wait until the baby is delivered. Does anyone know?

I am not sure that being scoped is the first option that doctors go to. I know it is the best way to diagnose but I would assume they would first want to do gene or antibioty testing and in what order I don't know.

the genetic test can be extremely fascinating but it doesnt determine 100% if you will have the disease... i would think your daughter should do blood & maybe biopsy testing...

and unless your grandchild has any symptoms as a baby or toddler- i would then think that genetic testing would be good for him/her.. i think thats what they do in italy- and if you've got the genes they follow up periodically with blood tests.. BUT again- they test for more than just DQ2 & DQ8 in Europe

Hamster101 Rookie
Hamster101
Posted

Pregnancy does all kinds of weird and wonderful things to the blood cell count, solute count and molecule count of the blood. I would suggest waiting until she has had her baby and wait a few weeks for her body to re-settle, just to be sure.

ravenwoodglass Mentor
ravenwoodglass
Posted

In addition to the advice you have already gotten be aware that for some of us having a baby can be a trigger for an increase in symptoms. I also would wait until a month or two after she delivers. Infertility can also be an issue for us so her troubles with that could well be linked to celiac. If she is having any symptoms before pregancy and delivery they could be worse after the baby is born. These symptoms could be mistaken for the 'baby blues' as well as the typical digestive issues that we tend to get. Keep in mind that blood tests do have a high rate of false negatives so if she is having any issues physical or mental do be sure to encourage her to try the diet after her testing is done.

cassP Contributor
cassP
Posted

funny that ravenwood just mentioned how one could be triggered by pregnancy... then be mistaken that there's a problem & just think that it's "baby blues"... cause i just had this conversation today at work... i just got diagnosed with Hypothyroid (probably Hashimotos).. and i just made excuses for how i felt because i was stressed or didnt get enough sleep- and i was discussing this with my coworker--> she started with HYPERthyroid-radiation-HYPOthyroid- anyways, it triggered her thyroid issues- BUT she just thought she was having Postpartum- it was completely masking the real issues

bincongo Contributor
bincongo
Posted
  • Author

My daughter went to her doctor today. He sent her to the lab he uses and they didn't have a clue as to how to do gene testing. She lives in North Carolina so he told her to check with Duke or UNC to see if they had any research going on that might pay for the test. I find this whole thing confusing. I don't think that since I am a Celiac that she should have to pay for testing. I don't know how much stronger family history you can get than your mother being a Celiac and probably her aunt who has the gene and will have antibody testing done soon. She wants gene testing done so she can know if she has anything to pass down to this new baby of hers.

Her doctor said that his wife's insurance paid 5 thousand dollars worth of gene testing because they were looking for cancer genes but no one seems to care that much about Celiac gene testing.

Jestgar Rising Star
Jestgar
Posted

Because there are no identified Celiac genes. Gene testing is interesting, but not informative, and there is no reason for insurance to pay for it.

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