Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ema

cmc811

Recommended Posts

cmc811 Apprentice
cmc811
Posted

Correct me if I'm wrong but my understanding is that EMA is highly specific, but not super sensitive. Is that correct?

 

Reason for asking is my son had a negative tTg-IgA (sufficient total IgA) and I asked about the DGP but the doctor ordered EMA. The tTg seems to be more sensitive than EMA so if that came back negative is there really any chance of the EMA being positive.

 

I really liked this new doctor we saw and he seemed super knowledgeable but I'm confused by his choice of tests.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

"The anti-endomysial antibody test (EMAIgA), EMA-IgA, is very specific for celiac disease. It’s estimated that a person with an elevated titer of EMA is almost assured of having celiac disease. However, the EMA test isn’t as sensitive as the tTG-IgA test; about 5-10% of celiacs do not have a positive EMA test."

cmc811 Apprentice
cmc811
Posted
  • Author

"The anti-endomysial antibody test (EMAIgA), EMA-IgA, is very specific for celiac disease. It’s estimated that a person with an elevated titer of EMA is almost assured of having celiac disease. However, the EMA test isn’t as sensitive as the tTG-IgA test; about 5-10% of celiacs do not have a positive EMA test."

So, how likely is it for the EMA to be positive if the ttg was negative?

GottaSki Mentor
GottaSki
Posted

So, how likely is it for the EMA to be positive if the ttg was negative?

 

Not likely, but it is good to have it run.  Is it at all possible that he ordered it by mistake?  My primary ordered my annual celiac antibody panel at my direction so I'd have them ready for my celiac doc appt and she accidentally ordered AGAs instead of the DGPs I had asked for because she clicked the wrong box in the lab order system.  Wasn't a big deal for me....but during the process of diagnosis in children, not running DGPs is a mistake in my opinion.

 

If the EMA is positive there is celiac damage to the endomysial layer of the small intestine.  

 

The reason the DGP is so important...especially in young kids is it measures possible reaction to gluten - potentially before damage to the small intestine is measurable.  It can also help determine if small quantities of gluten still remain in the diet of folks that have been diagnosed.

cmc811 Apprentice
cmc811
Posted
  • Author

Wasn't a big deal for me....but during the process of diagnosis in children, not running DGPs is a mistake in my opinion.

 

If the EMA is positive there is celiac damage to the endomysial layer of the small intestine.  

 

The reason the DGP is so important...especially in young kids is it measures possible reaction to gluten - potentially before damage to the small intestine is measurable.  It can also help determine if small quantities of gluten still remain in the diet of folks that have been diagnosed.

I don't know what the deal with the DGP is around here, but no one seems to think it has any value. When I asked about it he didn't really address it specifically. I told him that the pediatrician wouldn't order it because she said no one would know how to interpret the result. He looked puzzled by that and said no, that isn't true, but then he didn't order it either.....grrrr!

 

He was very explanatory with everything else but he was a little vague when it came to that test and I just wish I knew why. I will try and call today but don't know how far I will get with that...

GottaSki Mentor
GottaSki
Posted

I don't know what the deal with the DGP is around here, but no one seems to think it has any value. When I asked about it he didn't really address it specifically. I told him that the pediatrician wouldn't order it because she said no one would know how to interpret the result. He looked puzzled by that and said no, that isn't true, but then he didn't order it either.....grrrr!

 

He was very explanatory with everything else but he was a little vague when it came to that test and I just wish I knew why. I will try and call today but don't know how far I will get with that...

 

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

cmc811 Apprentice
cmc811
Posted
  • Author

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

I guess it's possible but in the whole visit that was the one topic that I felt got the brush off a bit. I'll see what I can find out today but I have some work meetings so I don't know how much time I will have to deal with it. How long after a blood draw can an order be put in and the same blood used? My son does not tolerate blood draws very well and I would hate to have to make him do it again because of a mistake :(

 

I have a message in so we'll see if I hear back today.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

DGP is a newer test so maybe many docs aren't up to snuff on it?  It's a wonder anyone is diagnosed, with all the confusion surrounding testing and general knowledge of Celiac! 

Geez....... <_<

nvsmom Community Regular
nvsmom
Posted

DGP is a newer test so maybe many docs aren't up to snuff on it?  It's a wonder anyone is diagnosed, with all the confusion surrounding testing and general knowledge of Celiac! 

Geez....... <_<

So true. None of my doctors ave heard of the DGP tests, and I don't think it is available here.... This is a city of over a million so you would think someone would spread the word.

GottaSki Mentor
GottaSki
Posted

So true. None of my doctors ave heard of the DGP tests, and I don't think it is available here.... This is a city of over a million so you would think someone would spread the word.

 

Very frustrating....it was new the year I was diagnosed -- very, very frustrating that it is not yet available everywhere (five years later).

 

Perhaps I should go back to suggesting AGAs -- unless the DGP is available.

 

Sorry to stop the flow of your thread CMC....carry on :)

cmc811 Apprentice
cmc811
Posted
  • Author

Sorry to stop the flow of your thread CMC....carry on :)

 

No worries!

 

It is frustrating that I can provide link after link to studies and they all say that DGP isn't better than tTg, but the 2 used together seem to yield the most accurate results, yet I can't get the test ordered.

 

I haven't given up on this GI yet, since I don't have his explanation yet. I left a message for him and didn't hear back today but since I'm new to this office I'm not sure if he works everyday or what his usual response time is. Holding out hope that I'll hear something tomorrow.

 

Also, I have a dentist appt for my 3 yr old tomorrow to get a better analysis of his enamel. The GI was VERY interested in his enamel issues and wanted more info from the dentist. Ironically this is the same child that vomited violently today with no other symptoms. So odd! We really have low suspicions in him compared to the 5 yr old but his belly has seemed more bloated the last week or so and now random vomiting......I'm beginning to feel like I'm looking for symptoms, but they just keep popping up.

 

So, anyway, I'll be calling the GI office again tomorrow to relay information from the dentist and to see if I should make an appt for the younger one. Like I said, he wasn't at the appt with us but the doctor seemed very interested in following up with him due to his teeth issues we mentioned. Hopefully with that call I can also find out about the DGP for the 5 yr old. I am just so ready to get to the bottom of all this. I'm actually using 2 weeks of vacation time so I have time to make appts, make follow up calls, etc and to clean the gluten out of my house.

tri-gal Rookie
tri-gal
Posted

It really seems that the medical community is confused by the lab tests available, how they differ and what to order and when.

I faced this exact issue yesterday with doc not being even aware of DGP or if it is available, so I  pointed to it in hard copy report of world gastro report that someone posted the other day (THANK YOU). I said it is supposed to be better for kids, mutter, mutter and she scribbled it on the lab form. But she also scribbled TGA (which I think was a mistake as she was  saying tTG outloud). I think the non-specialists don't really know. Hardly blame them. I think if the celiac medical community or labs could create more consistent terminology, labelling, and a simple fact sheet, it could help us all.

Okay, rant over. Here is what I think people are saying is best for kids in your (and my) situation:

 

1.total serum IgA (as a baseline to check for deficiencies in making that type of antibody

2. IgA tTG (as highly specific test, but noting it can be negative in kids or in IgA deficient folks,therefore, more on the list...)

3. IgA DGP (more sensitive than tTG and also very specific, but again, requires person to be producing IgA so continue on...)

4. IgG DGP quite sensitive and very specific, performs well in kids, and good test particularly for people with low IgA production ability)

 

there is also the EMA that you mentioned, but I gather while highly specific it takes extensive damage to show as positive, so limited value in some people who actually have celiac disease.

Please correct me if I'm wrong on the above. I defer to others but this is what I understand.

(I may cross -post this stuff later under "how long to gluten my daughter" as I'm really trying to figure this out too.  Our doc did not write down IgA DGP, so  I may just have to ask the lab to do it as I'm sure it was just an oversight. Besides, I have to pay with my pocket, not covered in my province so why do they care what I ask for).

good luck. I hope you get the tests you need.

tri-gal Rookie
tri-gal
Posted

oh yah, And coming back to the EMA question, I really don't know if it is redundant with the tTG or if some people could show EMA without being picked up on the tTG. I wonder if someone knows the answer to this, because that would suggest: may as well do them all if you have an at risk patient or a reasonable suspicion of celiac disease.

nvsmom Community Regular
nvsmom
Posted

The EMA IgA is rarely positive if the tTG IgA is not.  The EMA tends to become positive after the tTG IgA has damage to the villi. Then the body makes EMA and wipes out the top layer of damaged villi in a big autoimmune over reaction.... That's a bit simplified but basically how it works. That's why many labs (like mine) only run the EMA IgA AFTER a positive tTG IgA has been found. In my city to test for celiac disease, you only get a tTG IgA (and serum IgA) ordered and then if you fail that they will order the EMA.  No other options were available to me.

cmc811 Apprentice
cmc811
Posted
  • Author

Still no word on getting the DGP added, which is irritating since I left the message on Tuesday.....grrr!

 

Anyway, CRP and Lipase were normal but still waiting on TSH and EMA and possibly DGP if it was added but that is doubtful. I got the CRP and Lipase results through a mychart online access but typically abnormal results aren't posted there until after the doctor has contacted you. Wonder if the TSH isn't done yet or the result is hung up because it was out of range....looks like I need to call and check up on that tomorrow.

cmc811 Apprentice
cmc811
Posted
  • Author

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

 

So finally heard back from the Doctor and no, it wasn't a mistake. He uses EMA and TTG. :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.