Is The Ema Test Enough

[plumbago]

Last year, I wanted my father's doctor to test for Celiac, since I was newly diagnosed. I specifically asked him for the complete panel, although honestly, at the time, I did not know what tests made up the complete panel.

I got the results back, and all he had run was t-Transglutaminase AB IgA Reflex ENDOMYSIAL AB IgA. The results was 7 (Normals 0-19).

On this site, and other sites, I have come to understand that the complete celiac panel is:

1) TG-IgA or tissue transglutaminase-IgA;

2) AGA-IgG or Antigliadin IgG;

3) AGA-IgA or Antigliadin IGA;

4) Total IGA

My father has had ... well, I will say emotional distress and psychological challenges all his life. In spite of this, he is doing well (it could be a lot worse). Fortunately he has some excellent care in place, and the people who look after him are very nice and smart people. It's the doctor that I am/was concerned about.

Should I have my father re-tested, and demand the Celiac panel? Is that lone EMA test he had done sufficient to rule out Celiac disease? In my limited understanding, it seems that if that EMA test is positive, it's a high indication that you have celiac disease, but a negative result, I thought, did not necessarily rule out celiac disease.

Thanks!

Plumbago

[mushroom]

  On 12/26/2011 at 5:02 PM, plumbago said:

Last year, I wanted my father's doctor to test for Celiac, since I was newly diagnosed. I specifically asked him for the complete panel, although honestly, at the time, I did not know what tests made up the complete panel.

I got the results back, and all he had run was t-Transglutaminase AB IgA Reflex ENDOMYSIAL AB IgA. The results was 7 (Normals 0-19).

On this site, and other sites, I have come to understand that the complete celiac panel is:

1) TG-IgA or tissue transglutaminase-IgA;

2) AGA-IgG or Antigliadin IgG;

3) AGA-IgA or Antigliadin IGA;

4) Total IGA

My father has had ... well, I will say emotional distress and psychological challenges all his life. In spite of this, he is doing well (it could be a lot worse). Fortunately he has some excellent care in place, and the people who look after him are very nice and smart people. It's the doctor that I am/was concerned about.

Should I have my father re-tested, and demand the Celiac panel? Is that lone EMA test he had done sufficient to rule out Celiac disease? In my limited understanding, it seems that if that EMA test is positive, it's a high indication that you have celiac disease, but a negative result, I thought, did not necessarily rule out celiac disease.

Thanks!

Plumbago

I have bolded the test information. This sounds like two tests were run (although only one has a result): the tTG AB IgA and the Reflex ENDOMYSIAL AB IgA. It is a bit confusing. It is true that the EMA if positive is highly suggestive of celiac disease, but not definitive. It's a shame that he did not do the DGP (deamidated gliadin peptide), a newer test which is quite specific for celiac. And you are right that he needs a total serum IgA.

[frieze]

Endomysial antibody (EMA) is screened using an ELISA tissue transglutaminase (tTG) assay. If tTG IgA is 20 units or greater, then EMA titer will be added. All positives are titered to endpoint.

???? this is what i found, it would seem his tTG was probably positive? but the EMA negative. good luck

[plumbago]

  On 12/27/2011 at 1:00 AM, domesticactivist said:

At the very least a total iga should have been run as well. I have two posts on the blog linked from my profile that may help you. One is "Making the most of your doctor visit" and the other is part of my celiac testing myth series, I forget which number but "doctor knows best" is in the title. It contains info on the typical celiac tests ordered. Sorry no links as they are not allowed.

Thank you.

The only entries I could see/access on your blog under your profile were from June 2011, and did not appear to contain what you referenced, above.

Plumbago

[Gemini]

  On 12/27/2011 at 3:05 PM, domesticactivist said:

There is a link to my real blog which has something like 85 entries if you view my profile. For a while i was duplicating my site here but i gave up because it was too much work and i got in trouble for linkig to that one, too. They don't allow linking to your own blog on this site except from the profile page. So if you click on my avatar you should be able to see the link.

Most information that people need on testing can be had from any reputable Celiac organization website so why do you keep referencing your blog and trying to skirt this website's rules on that?

[domesticactivist]

It's true that testing info can be found all over the place. I've gone to the trouble of writing up my interpretation and linking to outside info as well. Anyone who posts here could have already gotten that info by googling but didn't. The other post I mentioned is all about my hard-won personal experience in having a positive experience with doctors.

I'm just trying to help people. My blog is not a big money maker like celiac.com. Yes, have services I provide - in person, in Portland, OR. I don't know anyone from this board in real life and have not generated sales through this site.

Many of the things that come up on this site come up over and over again. If I've already written an article on it I often would like to be able to share that with people. That's the whole point of the internet. I think it's stupid that people who are obviously contributing relevant content and who participate in the community beyond sharing links aren't allowed to link to their blogs. The moderators told me I should say "the blog linked from my profile" so that's what I do.

If you hate my posts, click the little "-" and dock me points. I get emails thanking me for my posts and my blog so I know it's helping somebody. If it doesn't help you, no one is going to make you read it. This is the last I'll have to say on this since I think it derails the real discussion.

[Gemini]

  On 12/27/2011 at 9:41 PM, domesticactivist said:

It's true that testing info can be found all over the place. I've gone to the trouble of writing up my interpretation and linking to outside info as well. Anyone who posts here could have already gotten that info by googling but didn't. The other post I mentioned is all about my hard-won personal experience in having a positive experience with doctors.

I'm just trying to help people. My blog is not a big money maker like celiac.com. Yes, have services I provide - in person, in Portland, OR. I don't know anyone from this board in real life and have not generated sales through this site.

Many of the things that come up on this site come up over and over again. If I've already written an article on it I often would like to be able to share that with people. That's the whole point of the internet. I think it's stupid that people who are obviously contributing relevant content and who participate in the community beyond sharing links aren't allowed to link to their blogs. The moderators told me I should say "the blog linked from my profile" so that's what I do.

If you hate my posts, click the little "-" and dock me points. I get emails thanking me for my posts and my blog so I know it's helping somebody. If it doesn't help you, no one is going to make you read it. This is the last I'll have to say on this since I think it derails the real discussion.

I should make it clear that I don't hate your posts...that's a little over dramatic. I may not always agree with your content but I don't hate them. I can also understand you wanting to help people..that's why the vast majority of us are here....to share our experiences to help those who are new to this lifestyle. I just don't think any one of us should be constantly promoting a personal blog from another Celiac website. Advertisers pay for the right to show their products here and advertise themselves so there is a difference. I know you are not selling anything but you mention your blog to the point of annoyance. Do you feel you cannot say things directly on this forum that you blog about? I think if you don't want to derail the real discussion that is going on at this forum, then you shouldn't always be mentioning your blog. I just think the two should be kept separate but that is just my opinion so you don't have to respond to it at all.

[domesticactivist]

  On 12/27/2011 at 10:33 PM, Gemini said:

I should make it clear that I don't hate your posts...that's a little over dramatic. I may not always agree with your content but I don't hate them. I can also understand you wanting to help people..that's why the vast majority of us are here....to share our experiences to help those who are new to this lifestyle. I just don't think any one of us should be constantly promoting a personal blog from another Celiac website. Advertisers pay for the right to show their products here and advertise themselves so there is a difference. I know you are not selling anything but you mention your blog to the point of annoyance. Do you feel you cannot say things directly on this forum that you blog about? I think if you don't want to derail the real discussion that is going on at this forum, then you shouldn't always be mentioning your blog. I just think the two should be kept separate but that is just my opinion so you don't have to respond to it at all.

It's more a time thing. Usually am reading this forum on my phone when I am doing something else that requires sitting around and waiting, so long posts or pulling up original sources isn't practical. I have at other times made many lengthy posts on topics that are on my blog. Anyway, I take your point and am sorry if I got over-sensitive. I was still feeling a little bruised about the post where you said I was being far-fetched about my son getting glutened from a plate. I'm shouldn't have let that get to me. I blame gluten ;p

[psawyer]

There is a difference between pointing someone to a recipe that they have asked for, which is fine, versus using every opportunity to promote your blog. The rule can be broken without posting a link.

[nora-n]

sounds like they did the ttg IgA only, and planned to run the EMA in case the ttg IgA was positive.

That is because the EMA is an expensive manual test involving electron microscope and monkey esophagus or umbilical cord and an operator.

[Gemini]

  On 12/27/2011 at 10:42 PM, domesticactivist said:

It's more a time thing. Usually am reading this forum on my phone when I am doing something else that requires sitting around and waiting, so long posts or pulling up original sources isn't practical. I have at other times made many lengthy posts on topics that are on my blog. Anyway, I take your point and am sorry if I got over-sensitive. I was still feeling a little bruised about the post where you said I was being far-fetched about my son getting glutened from a plate. I'm shouldn't have let that get to me. I blame gluten ;p

I did not intend for you to feel bruised by my remarks but just wanted to point out that, unless someone contaminated the plate that your son's food went on, the likelihood of his being glutened by dish soap is next to none. You have to really use your common sense on this one. I run all my dishes through a dishwasher and do not screen detergent for gluten. I used to and never found one that had any gluten components. Not saying they don't exist but I have never found one. Plus, there is the rinse issue. The rinse cycle in dishwashers is pretty good and detergents are designed to not leave residue....at least most of them are. After all, who wants to taste soap in their food? I have never heard of anyone who has been glutened this way and I really think it steps into the realm of unnecessary food paranoia. You can be too paranoid about gluten and it happens all the time, as we have seen from posts to this site. There are times when being vigilant is useful and necessary but this is not one of them. Unless you see old food stuck to a plate, dishes are safe to eat from at other peoples homes. I feel this point needs to be reiterated because newly diagnosed Celiacs need to have one less thing to worry about...there's enough to learn in the beginning to make one's head spin!

[domesticactivist]

I agree dishwashers are safe and we have eaten off dishes washed in dishwashers at gluten houses without a problem. In this case it was a dish washed by hand with an old rag or sponge and air dried with in a kitchen where from scratch daily baking is the norm. It was a stupid risk to take, IMO, and there is nothing else that could have got him that we could think of. I swear I'm not out to scare the newbies.

[ravenwoodglass]

  On 12/29/2011 at 12:00 AM, domesticactivist said:

I agree dishwashers are safe and we have eaten off dishes washed in dishwashers at gluten houses without a problem. In this case it was a dish washed by hand with an old rag or sponge and air dried with in a kitchen where from scratch daily baking is the norm. It was a stupid risk to take, IMO, and there is nothing else that could have got him that we could think of. I swear I'm not out to scare the newbies.

Wheat flour remains airborne for up to 2 days so it may have been inhaling gluten particles that got him. We are advised not to cook with wheat flour for others. It is likely eating anything in that home would get a sensitive celiac.

[frieze]

  On 12/28/2011 at 5:02 PM, nora_n said:

sounds like they did the ttg IgA only, and planned to run the EMA in case the ttg IgA was positive.

That is because the EMA is an expensive manual test involving electron microscope and monkey esophagus or umbilical cord and an operator.

But, would they bother to mention the EMA, in the results, if it hadn't been done?

An obvious case were the actual results from the lab are necessary.

[nora-n]

the reflex with EMA most likely means that they first run the ttg as a screening test, and if it is positive, then they run the more specific and expensive EMA test.

But they could have just done the new and very specific and highly sensitive DGP test, which has the added advantage that it is also designed to pick up patchy celiac.

The ttg test only picks up about 30-40 % of patchy celiac.

[Gemini]

  On 12/29/2011 at 12:00 AM, domesticactivist said:

I agree dishwashers are safe and we have eaten off dishes washed in dishwashers at gluten houses without a problem. In this case it was a dish washed by hand with an old rag or sponge and air dried with in a kitchen where from scratch daily baking is the norm. It was a stupid risk to take, IMO, and there is nothing else that could have got him that we could think of. I swear I'm not out to scare the newbies.

I think you may have figured out the problem...the airborne gluten issue. Even I recognize that those who bake often using wheat flour will have

wheat all over their kitchen. I mean, look how the gluten-free baking mixes poof when you pour them into a bowl. gluten-free flours tend to be more refined in texture and if they become that easily airborne, then wheat flour will too. I refuse to cook with or even have bagged wheat flour in my house, for obvious reasons.

It's not stupid that it happened....everyone forgets from time to time about how careful you have to be. You try to live in a world where you live normally without being paranoid but we are all human and make mistakes. They happen fewer and far between the longer you are gluten-free but they can still happen from time to time.

[frieze]

  On 12/29/2011 at 2:47 PM, nora_n said:

the reflex with EMA most likely means that they first run the ttg as a screening test, and if it is positive, then they run the more specific and expensive EMA test.

But they could have just done the new and very specific and highly sensitive DGP test, which has the added advantage that it is also designed to pick up patchy celiac.

The ttg test only picks up about 30-40 % of patchy celiac.

That was my thought, that the ttG was +, which means that the person in question tested + on that one celiac test....

[nora-n]

the ttg test was lowish, so they did not test the EMA