Have More Questions & Need More Advice Please :)

[mom26boys]

OK, so I went to see a gi today and showed him my original test result. I had an endomysial ab (iga) screen and it came back positive. There was also a titer done which came back at 1:5 (I have no idea what that means). He told me that my gp ordered the wrong test and that the endomysial ab screen is not an accurate test.

He explained the different ways to check for celiac and the different tests they do (which I already knew all about). He gave me the option of having a Tissue Transglutaminase AB IGA/IGG and an IGA Level and said that if the numbers are high enough, he wouldn't even bother doing the biopsy. He also said I could go with the genetic test, but that its a lot more costly. I asked him if he could give me an order for both and I would decide which test I wanted, and he did. So here are my questions for you:

1. What is the endomysial ab screen? Is it an outdated test? From what I understand it is 100% specific to celiac, but he doesn't seem to think so.

2. Based on the fact that the endomysial screen came back positive, would you do the genetic test or the other tests (TTG AB IGA/IGG and IGA)? I have read that there is a lot of false positives with those.

3. Should I do both tests? If so, has anyone had experience with their insurance co. not paying for the genetic test? I figured that the positive endomysal screen would warrant a genetic test, but he said not for a gastroenetrologist, and that they may not pay for it. I would love to just go ahead and do both tests but I'm concerned about the insurance kicking back the genetic test and having to pay for it out of pocket. I have an HSA and my deductible is met so everything is covered at 100%.

Thank you so much for your help and advice! I have gotten so much more from this forum than any other site I've gone to.

[Roda]

Your insurance should pay for the Iga(checked to see if you are deficient or not which helps to validate the other tests) and the TTG Iga/Igg. You will have to check with your policy on the genetic testing. Mine won't pay for genetic testing at all. I found out when my youngest son was 14 mo old and being screened genetically for LAD (leukocyte adhesion deficiency). I had already taken him in and they drew his blood, when the lady from my work called me and told me they would not pay. She had the nerve to stop the lab from sending his blood to Mayo Clinic in in MN (the only lab at the time that performed the test) until she talked to me. I did not care if they paid for that test, we needed to know if he had it because it would have inpacted his care greatly. As a result I had to take him back in and get stuck again and I was furious. Anyway, I have not had myself genetic tested or my two boys because of the ins. not paying. For me it won't change anything (I am curious though) and I will annually have the boys screened or checked sooner if symptoms should arise. It probably would not hurt, but it's up to you, to have the rest of the pannel done. I didn't and wish I did so I would have a baseline to go on. I only had the TTG done. If you do decide you should have the anti gliadin antibodies done also.

[LDJofDenver]

Here is a link to the University of Chicago Celiac Center:

Open Original Shared Link

It discusses the different tests used and why, etc. Maybe it will help.

I'd go for the blood panels first, especially since they're typically covered under medical insurance. Then if you get what you feel is a false negative, you can always go to the genetic testing to see if you even carry the gene.

Also, many celiacs never get a confirmed medical diagnosis -- they just, usually out of desperation and years of misdiagnosis, went on a gluten free diet because many of their symptoms led them there, and all their problems disappeared. For many, that is enough of a diagnosis. It is an individual thing.

[mom26boys]

Your insurance should pay for the Iga(checked to see if you are deficient or not which helps to validate the other tests) and the TTG Iga/Igg. You will have to check with your policy on the genetic testing. Mine won't pay for genetic testing at all. I found out when my youngest son was 14 mo old and being screened genetically for LAD (leukocyte adhesion deficiency). I had already taken him in and they drew his blood, when the lady from my work called me and told me they would not pay. She had the nerve to stop the lab from sending his blood to Mayo Clinic in in MN (the only lab at the time that performed the test) until she talked to me. I did not care if they paid for that test, we needed to know if he had it because it would have inpacted his care greatly. As a result I had to take him back in and get stuck again and I was furious. Anyway, I have not had myself genetic tested or my two boys because of the ins. not paying. For me it won't change anything (I am curious though) and I will annually have the boys screened or checked sooner if symptoms should arise. It probably would not hurt, but it's up to you, to have the rest of the pannel done. I didn't and wish I did so I would have a baseline to go on. I only had the TTG done. If you do decide you should have the anti gliadin antibodies done also.

Thank you. You make a lot of sense. I'm sorry about what happened to your little guy. That would make me furious too!!! Yes, whatever the tests say, it will not change anything for me. The proof for me was going gluten-free for 3 weeks and thats all I need to know. I'm more interested (and of course curious) in order to test my boys so they don't spend years trying to figure out what is wrong with them like I did. I suspect my dad and his mom had it and so thats why I'm being so adamant about being tested, even though the doctors think I'm a nut. I will have the rest of the panel done, since my ins. will pay 100% and I'll ask about the genetic test. Thanks again for your advice.

[mom26boys]

Here is a link to the University of Chicago Celiac Center:

Open Original Shared Link

It discusses the different tests used and why, etc. Maybe it will help.

I'd go for the blood panels first, especially since they're typically covered under medical insurance. Then if you get what you feel is a false negative, you can always go to the genetic testing to see if you even carry the gene.

Also, many celiacs never get a confirmed medical diagnosis -- they just, usually out of desperation and years of misdiagnosis, went on a gluten free diet because many of their symptoms led them there, and all their problems disappeared. For many, that is enough of a diagnosis. It is an individual thing.

Yes, you are right. I have made up my mind that no matter what these tests say, as soon as I go to the lab, I am gluten free! That will have to be enough of a diagnosis for me. I am at the point of desperation and years of misdiagnosis, and as someone else put it who responded to one of my previous points, no matter what these doctors say, I don't need their permission to go gluten free. So yes, I will go ahead and have the panel done first and do the genetic afterwards. Thank you for the link you sent me too. It did answer a lot of questions. I was mainly confused because I thought the endomysial screen was 100% specific to celiac, but I will get the rest of them done too as that will hopefully paint a better picture. Thanks again!