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Endomysial Test (ema)


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29 replies to this topic

#1 Claire

 
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Posted 07 November 2005 - 11:09 AM

I have a friend whose husband has all the signs of celiac. I gave her info on the celiac panel for their doctor. He chose to do one test only - the endomysial test. The results were negative.

I understand that the tTg test is the most conclusive one if only one test is done. Anyone agree or disagree with that?

About the endomysial test: anyone had this? What do you think about it? Why would it be given to the exclusion of the full panel or the tTG?

Would any of you consider the endomysial test a definitive answer? Claire
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#2 floridanative

 
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Posted 07 November 2005 - 11:29 AM


I have a friend whose husband has all the signs of celiac. I gave her info on the celiac panel for their doctor. He chose to do one test only - the endomysial test. The results were negative.

I understand that the tTg test is the most conclusive one if only one test is done. Anyone agree or disagree with that?

About the endomysial test: anyone had this? What do you think about it?  Why would it be given to the exclusion of the full panel or the tTG?

Would any of you consider the endomysial test a definitive answer?    Claire

<{POST_SNAPBACK}>


Sorry I don't have any answers for you. I am just glad to see where you say that the tTg test is the most conclusive test if only one is done. My doctor's asst. won't even tell me WHAT blood test he did and they denied doing a full panel Celiac test before scheduling a biopsy. So when I see the hemotologist tomorrow I hope to find out what test was actually done since he has my records for the consultation. For many reasons, I'm switching to another GI who knows more about Celiac. Mine doesn't know half as much as I do and I only heard of it in Sept. But at least now I will find out if I had the tTg done yet or not.
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Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#3 cy7878

 
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Posted 07 November 2005 - 12:22 PM

I have a friend whose husband has all the signs of celiac. I gave her info on the celiac panel for their doctor. He chose to do one test only - the endomysial test. The results were negative.

I understand that the tTg test is the most conclusive one if only one test is done. Anyone agree or disagree with that?

About the endomysial test: anyone had this? What do you think about it?  Why would it be given to the exclusion of the full panel or the tTG?

Would any of you consider the endomysial test a definitive answer?    Claire

<{POST_SNAPBACK}>



The endomysial is the better test to get. The reason tTG is done more often is because the lab charges twice as much for EMA than tTG ($135 vs $70 as priced by Prometheus Labs). The EMA is also more "operator dependent" meanig the results intrepretation is dependent on the lab that does them and is more difficult to do it right. As with all serological based tests, a negative may not be definitive. In general, to be completely sure of one's condition, the "panel" of tests that should be done are:

serum total IgA
serum tTG and/or EMA IgA
some doctors will also order the genetics test to look for HLA-DQ2 and DQ8 to see if the person even have the genetic predisposition to get celiac disease which is about 99.9%.

and if any of the above tests are abnormal, to get the biopsy done by experienced endoscopist who knows what they are looking for.

Regards
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#4 KaitiUSA

 
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Posted 07 November 2005 - 03:07 PM

The tTG test is the most accurate one for celiac you can get. It is actually taking over biopsies for diagnosis with some doctors.
The EMA is another very accurate test but in my opinion should NOT be done alone.
Both of these tests usually detect damage.
The other tests in the complete panel are:
IgA is one of the first to usually elevate unless you are IgA deficient and detects a gluten reaction in the body.
IgG is the least specific and is another one to usually elevate first.
Total Serum IgA which will rule out IgA deficiency.

Without the gene you are 99.9% likely to not get celiac. However, many people do have the gene and do not develop celiac. Also, a very small percentage do not have either of the main genes but another gene. Not all of the celiac genes have been identified yet but there are some people with celiac that have the DQ1 gene and not the DQ2 or DQ8 which is usually found.

And I am not a fan of biopsies...I did not get one because the doctor was so sure I had it. It can rule celiac in but it can't rule it out. It is always a hit or miss because if it is in beginning stages or has sporadic damage they can easily miss it.

Hope this helps out a bit.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#5 jajus100

 
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Posted 07 November 2005 - 03:31 PM

[quote name='floridanative' date='Nov 7 2005, 02:29 PM']
[/quote]

My doctor's asst. won't even tell me WHAT blood test he did and they denied doing a full panel Celiac test before scheduling a biopsy.

<{POST_SNAPBACK}>

[/quote]

It is your body, you paid for the tests, you have the right to see those tests. I would ask them if they would prefer to give the medical records to your attorney... Or tell them, you will only pay for them if you receive them.... It is unreal to me, when I see people on this board denied their medical records. You have every right to them--ALWAYS.
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#6 Rachel--24

 
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Posted 07 November 2005 - 03:37 PM

It is your body, you paid for the tests, you have the right to see those tests.  I would ask them if they would prefer to give the medical records to your attorney...  Or tell them, you will only pay for them if you receive them....  It is unreal to me, when I see people on this board denied their medical records.  You have every right to them--ALWAYS.

<{POST_SNAPBACK}>


Is it normal to have to pay for your records? I've requested mine but I was told I have to pay 25 cents for each page. I cant imagine how many pages must be in my file. I dont even think I had a file until 3 yrs. ago and now its *really* thick. They couldn't even give me an idea of how many pages there are so I'm not sure I wanna end up paying hundreds of dollars. :blink:
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Rachel

#7 ravenwoodglass

 
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Posted 07 November 2005 - 03:51 PM

Is it normal to have to pay for your records? I've requested mine but I was told I have to pay 25 cents for each page. I cant imagine how many pages must be in my file. I dont even think I had a file until 3 yrs. ago and now its *really* thick. They couldn't even give me an idea of how many pages there are so I'm not sure I wanna end up paying hundreds of dollars.  :blink:

<{POST_SNAPBACK}>



Yes they can and often do charge you for a copy of each page. It can be worth it though.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 skoki_mom

 
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Posted 07 November 2005 - 04:38 PM

Please read the following abstract.

http://www.ncbi.nlm....2&dopt=Abstract

The EMA has a higher specificity than the TTg. In other words, a positive EMA can really only be celiac disease. A positive TTg is 92% specific for celiac disease, but can be indicitive of other diseases such as Crohn's. As for me, I only had a EMA test done, which was + and verified on biopsy. My kids had both TTg and EMA done since kids are harder to diagnose (they were - on both, both asymptomatic). HTH.
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LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

#9 KaitiUSA

 
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Posted 07 November 2005 - 05:01 PM

Please read the following abstract.

http://www.ncbi.nlm....2&dopt=Abstract

The EMA has a higher specificity than the TTg.  In other words, a positive EMA can really only be celiac disease.  A positive TTg is 92% specific for celiac disease, but can be indicitive of other diseases such as Crohn's.  As for me, I only had a EMA test done, which was + and verified on biopsy.  My kids had both TTg and EMA done since kids are harder to diagnose (they were - on both, both asymptomatic).  HTH.

<{POST_SNAPBACK}>


The thing is I think the EMA can have more false negatives so are therefore not as accurate. Please do not get the IgG-tTG and the IgA-tTG mixed up because the IgA-tTG is the specific one and the IgG-tTG is less sensitive.
I have one of the main celiac genes and all my tests came back high including the tTG- except the EMA came back negative.

You may want to read this as well: http://www.clinchem....m.2004.035832v1
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#10 Claire

 
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Posted 07 November 2005 - 05:47 PM

Thanks so much for all these replies. I have some reading to do. A little surprised by the differing opinions.

I had sent to my friend the list for the full Celiac panel. The doctor declined and ran just the EMA.
Now we have to decide what she needs to do. Her husband has every Celiac sympton you can imagine - as does his daughter. He also has Addison's disease. We are thinking about going the Kimball lab route but that one doesn't test for the subset - non-celiac gluten sensitivity. Insurance is an issue for them as it was for me. Claire
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#11 skoki_mom

 
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Posted 07 November 2005 - 09:01 PM

Claire, try this link as well. Sorry I couldn't seem to cut and paste the pdf format, so here it is in html.

http://66.102.7.104/...nel tests&hl=en

It is very recent, October 2005 :)
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LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

#12 Nevadan

 
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Posted 07 November 2005 - 09:43 PM

Regarding medical records, I found that all my lab work done at Quest Diagnostics Lab is available to me just for the asking - they don't advertise this so one has to ask. They can even pull up copies from several months past. I don't know if other labs do the same, but it would be worth asking.

George
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#13 floridanative

 
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Posted 08 November 2005 - 06:49 AM

[QUOTE][
It is your body, you paid for the tests, you have the right to see those tests. I would ask them if they would prefer to give the medical records to your attorney... Or tell them, you will only pay for them if you receive them.... It is unreal to me, when I see people on this board denied their medical records. You have every right to them--ALWAYS.

<{POST_SNAPBACK}>

[/quote][/QUOTE]

You are correct but since I'm not willing to get the endoscopy before getting the full Celiac panel blood tests done, I'm not even going back to that GI. He's the first one I've seen and is admittedly not too familiar with celiac disease. I'm seeing a hemotologist today and I was at first going to rule out having an iron disorder but now I'm focussed on getting Caliac panel run since the GI refused to do it. The blood doc is highly recommended so I'm hoping he will offer to run the panel himself. If he doesn't bring it up I'll ask for it. I find doctors don't seem to like it when you go in prepared because they don't want the patient to tell them what to do. But we are paying their salaries so I do think they are technically working for us. But since I know going in their egos are so big, I give them the chance to say the right thing before letting on that I have done my research and I know what I'm talking about to an extent.
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Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#14 julie5914

 
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Posted 08 November 2005 - 07:17 AM

Rachel, yeah, I hate that they charge so much. Ask them to fax the records to you locally though or to a doctor that you know will not charge and you may be able to get around it.
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#15 Claire

 
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Posted 08 November 2005 - 09:55 AM

Regarding medical records, I found that all my lab work done at Quest Diagnostics Lab is available to me just for the asking - they don't advertise this so one has to ask.  They can even pull up copies from several months past.  I don't know if other labs do the same, but it would be worth asking.

George

<{POST_SNAPBACK}>



Note that Kimball Lab faxes test results to your doctor and mails a copy to you. Claire
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