How Important Is The Ema Test?

[Gaye of PA]

I was tested for everything (IGA serum, TTG, AGA (IGG AND IGA) except EMA. The only thing that came out positive was the AGA-IgA (and the total serum was OK). I have tons of symptoms, so I know going off gluten will be good for me, but the things I'm reading say this means it "could" be gluten sensitivity OR it could be another leaky gut syndrome. (this from this forum and also Korn's Living gluten-free)

The confusing aspect of all this is that my doctor's office may need to close in a couple of weeks because of his personal problems, so I cannot make an appointment with him. And his nurse practitioner does not want to authorize this last test. She says they count the one positive as a definite sign of celiac, so I don't need any more.

Meanwhile, I'm on Day 3 of going gluten-free, which maybe I shouldn't do if I'm to have another blood test.

I guess my main worry is that if I have "another leaky gut syndrome" then I won't get totally better by going gluten-free. And I so badly want to be totally better.

I also worry that when I try to convince my brother to be tested, that he will point to my blood tests and claim that I'm not really diagnosed for gluten intolerance.

On the other hand, I've read that if you're negative for TtG, most likely the EMA will come out negative too.

Any opinions on whether I should seek another doctor to get this last test, or do I just need to settle down and be thrilled that I've been pointed in the right direction of going gluten-free?

[Gemini]

  Gaye of PA said:

I was tested for everything (IGA serum, TTG, AGA (IGG AND IGA) except EMA. The only thing that came out positive was the AGA-IgA (and the total serum was OK). I have tons of symptoms, so I know going off gluten will be good for me, but the things I'm reading say this means it "could" be gluten sensitivity OR it could be another leaky gut syndrome. (this from this forum and also Korn's Living gluten-free)

The confusing aspect of all this is that my doctor's office may need to close in a couple of weeks because of his personal problems, so I cannot make an appointment with him. And his nurse practitioner does not want to authorize this last test. She says they count the one positive as a definite sign of celiac, so I don't need any more.

Meanwhile, I'm on Day 3 of going gluten-free, which maybe I shouldn't do if I'm to have another blood test.

I guess my main worry is that if I have "another leaky gut syndrome" then I won't get totally better by going gluten-free. And I so badly want to be totally better.

I also worry that when I try to convince my brother to be tested, that he will point to my blood tests and claim that I'm not really diagnosed for gluten intolerance.

On the other hand, I've read that if you're negative for TtG, most likely the EMA will come out negative too.

Any opinions on whether I should seek another doctor to get this last test, or do I just need to settle down and be thrilled that I've been pointed in the right direction of going gluten-free?

The EMA is specific to Celiac Disease, meaning that a positive EMA can mean only Celiac Disease, nothing else. Your blood tests show something is going on, whether or not it's celiac disease vs. GS doesn't really matter because both will totally screw you up if not diagnosed. Some people need to see more proof positive before going gluten-free and that's fine as long as you realize that diagnosing celiac disease can be a minefield of error. I am surprised that the doctor would diagnose Celiac on one test alone but if you go gluten-free and notice definite improvement, that would back up the blood work.

Your Ttg, being negative, could mean that you have not sustained enough damage to show on an antibody test. If you are truly Celiac, that's a good thing....you have caught it before real damage has been done.

As far as convincing your brother to get tested, I wouldn't worry about that or press the issue at all. If he has symptoms and is in denial, nothing you could say or do will change his mind....until he gets sick enough to make that decision for himself. My family are a bunch of denialists and will not listen to me...until recently when my father and sister have developed more serious problems directly related to celiac disease. Now that their lives are being impacted on a bigger scale, they are asking for help in getting tested. At least my father is.....my sister just tested positive for Sjogren's but I think she still believes you can have that without the Celiac. You'd think the dummy would know better as she is in the medical field but apparently not. I've got better things to do than chase these people around asking them to be tested. Very hard to deal with sometimes but that's life. In fact, I've found going gluten-free a piece of cake compared to dealing with family members with symptoms, who are in denial.