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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.


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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Celiac.com Sponsor (A8):

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"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."

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"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?


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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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.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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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...


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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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.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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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.


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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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....... <_<

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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.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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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 :)


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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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.


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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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.

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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.

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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.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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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.


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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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. :(


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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