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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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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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