Ema/ Iga Test Results - 5 Year Old

[Mom2-2girls]

Hello! This is my first post here.

My daughter who just turned 5 was given a blood test EMA & IgA after I mentioned her stomach aches. Two years ago our naturopath did a IgG on her and she came back off the charts for gluten and wheat. The chart ended at 325 and she was at 601 which is the maximum they measure. We tried going gluten-free to see if it helped with her rashed she was having. I don't think we were very strick and ended up going off it. I told my ped. about the IgG results and he basically said it was useless.

So... the ped. says the EMA/ iGa show "strong positive". I did see a number of 320 on the sheet but I am not really sure what that was. I am hoping to have the results faxed to me tomorrow.

I have a few questions that I don't think I can get answered by my ped...

1./ How accurate is the EMA test? I just want a basic answer. I keep finding detailed info that I have a hard time sorting through.

2./ Our ped. says to go gluten-free now. Everything I read says otherwise. We likely won't hear from the Pediatric GI specialist for a couple weeks and then it sounds like we won't even get an appointment until September!! The ped said that the damage will still be there in a few months so we can start now.

My daughter is having more and more tummy problems and has even lost 2.5 pounds recently. She never loses weight... I feel so frustrated that I have to wait months to see someone. So I have to keep watching her suffer for a few months if we want to have a biopsy?

My other daughter who is about to turn 2 has recently started having rectal prolapse and has also been constipated most of her life. I read that rectal prolapse can happen with celiac. My ped. isn't in a rush to have her tested and I don't get why?

Any thoughts or advice would be greatly appreciated.

[Metoo]

Hello! This is my first post here.

My daughter who just turned 5 was given a blood test EMA & IgA after I mentioned her stomach aches. Two years ago our naturopath did a IgG on her and she came back off the charts for gluten and wheat. The chart ended at 325 and she was at 601 which is the maximum they measure. We tried going gluten-free to see if it helped with her rashed she was having. I don't think we were very strick and ended up going off it. I told my ped. about the IgG results and he basically said it was useless.

So... the ped. says the EMA/ iGa show "strong positive". I did see a number of 320 on the sheet but I am not really sure what that was. I am hoping to have the results faxed to me tomorrow.

I have a few questions that I don't think I can get answered by my ped...

1./ How accurate is the EMA test? I just want a basic answer. I keep finding detailed info that I have a hard time sorting through.

2./ Our ped. says to go gluten-free now. Everything I read says otherwise. We likely won't hear from the Pediatric GI specialist for a couple weeks and then it sounds like we won't even get an appointment until September!! The ped said that the damage will still be there in a few months so we can start now.

My daughter is having more and more tummy problems and has even lost 2.5 pounds recently. She never loses weight... I feel so frustrated that I have to wait months to see someone. So I have to keep watching her suffer for a few months if we want to have a biopsy?

My other daughter who is about to turn 2 has recently started having rectal prolapse and has also been constipated most of her life. I read that rectal prolapse can happen with celiac. My ped. isn't in a rush to have her tested and I don't get why?

Any thoughts or advice would be greatly appreciated.

1) The EMA test is over 90% accurate.

2) If you want to go through with the scope, she should continue eating gluten. Scopes are also notorious for false negatives, so even if the scope's biopsy doesn't show damage it doesn't mean she doesn't have celiac.

If it were me...based on the blood test alone, with symptoms, if your doctor will diagnose her with celiac..... I would take her off gluten since she would have an official diagnosis already at that point.

[mushroom]

Doctors tend to be very blase about how long diagnosable damage lingers in the GI tract. It can depend on how severe the damage is (If your daughter's numbers are as high as they appear to be your ped. could be right), but it is generally accepted on this board at least that healing begins to take place immediately upon the withdrawal of gluten, and that a safe waiting period between the withdrawal of gluten and the biopsy is only two weeks before you risk affecting the biopsy results. Now, it is true that full healing takes some time - for adults who have been undiagnosed for a long time it can take years - but there is a scale on which they measure the damage (negative, inconclusive,positive) and anything below positive is considered to be negative usually.

I would ask your ped. if the GI visit is really necessary with such high numbers. And yes, the EMA is pretty specific for celiac. Perhaps, even if he wouldln't diagnosis her as celiac, he would giver her a diagnosis of gluten enteropathy which should be sufficient to get her accommodations at schools and other places where you won't be able to keep her safe on your own. Tell him you do want the diagnosis, but you can't keep her suffering on gluten for another five months for a test which may not be accurate anyway.

I am assuming you are in Canada?? that you have to wait that long?

As you are aware by now, it is important to strictly adhere to gluten free if you want to help your daughter heal. There can be no fudging.

By the way, welcome to the board, and fire away with any other questions you might have.