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Endomysial Vs. Transglutaminase Test
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Hi - this is my first time writing but I am at wits end in finding an answer. My daughter has been on "watch" for Celiac for 2 years. She is 8 years old and two years ago starting having stomach aches around dinner, she is often in the bathroom, stools are somewhat normal. Her Endomysial test is normal but the Transglut tests was 97 2 years ago, 44 last year and now is 89, all well above normal range. She had a scope 2 years ago that was normal. I am concerned given the non-treatment of this disease that we are waiting for a positive biospsy. She has since had an Impedance Probe test (last week) because she has so much gas in her she feels like she is going to vomit, so we are checking for reflux.

I have an appt on Tues to go over the lab and probe results and most likely will have another scope procedure for biopsies. What questions should I be asking? We took the new genetic test to rule her out and could not. She has not changed clothing size for over a year, he is 52 inches and 59 lbs.

Any guidance or comments are appreciated.

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Here's a little info on the tests:

The tTG is extremely sensitive. This is from the book "Dangerous Grains" (my fav. book to quote )

"The tTG test usually identifies about 98% of those who have celiac disease, and it is a very specific test that can be used to rule out celiac disease in 95% of patients. This test appears to be superior to endomysium antibody testing, not only because it is less costly but also because it is a little better at identifying celiac disease and because interpretive bias is reduced by the use of computer scanning."

As for EMA Testing:

"This test is very sensitive, and it will identify 90% or more of those patients with flat intestinal walls, but some evidence suggests that it is less reliable for identifying cases with milder intestinal damage. ... However, a negative EMA blood test has limited value for excluding celiac disease. This test is also limited by the need for individual observation and evaluation of stained blood cells."

I hope that helps :)

Good luck!

- Michelle

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Hi and welcome to the board! I am sorry to hear your daughter is sick, I know it's hard to deal with when our children are not well no matter how old they are ;)

My daughter is 9 (almost 10) and has had problems pretty much since day one. I started getting sick in 2002 and after going the "traditional doctor" route and getting nowhere because all my tests/procedures came back normal I decided to get tested through Enterolab. When my test came back positive I decided to have my daughter tested too. I didn't want to put her through all the tests I went through, her test came back positive too. After going gluten-free she was like a new child, she didn't complain after eating, she wasn't grumpy all the time and seemed to have more energy.

My suggestion to you is, since your daughter's blood tests are positive I would put her on a gluten-free diet. I know some people swear by biopsies but I personally do not think they are necessary if labs are positive or if you improve on a gluten-free diet.

I wish you luck and hope your daughter feels better soon! :)

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When a blood test, especially EMA or tTG comes back positive I think you can conclude the diagnosis is positive for Celiac disease. The biopsy is no longer always recommended as some doctors think it is like waiting for the heart attack to verify the EKG test that measured heart irregularities. The tTG test already shows a reaction to gluten.

Here is a website to look at: http://www.cfpc.ca/cfp/2004/May/vol50-may-cme-1.asp

Here is another concerning biopsy reliability.

http://www.celiac.com/st_prod.html?p_prodid=25

Good luck and best wishes for your daughter's good health.

Leslie

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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