Negative Ttg And Ema...is That Conclusive Enough?

[stomica]

My 3 1/2 year old daughter has had poop issues (sorry for the bluntness!) since she was about 18 months old. She's been diagnosed with colitis through a colonoscopy. She's taking medication for colitis, which is a non-specific topical anti-inflammatory for the colon. She was tested for celiac but only the IgG's and IgA's were elevated. The other two more sensitive tests were negative. The ped GI retested her again (while she was on gluten) but he only did the ttg and ema tests, both of which were negative. He's a great doc. He says without doubt she does NOT have celiac. He does feel she has a wheat allergy in addition to inflammatory bowel disease (colitis). The allergist, however, feels she could very well have a gluten intolerance. I did put her on a dairy free/gluten free diet for a few months. It was hard to say if it worked or not...she was doing well (digestively speaking) at the time, so it wasn't a huge difference. I do think she slept better. (She has night terrors every stinkin' night...I don't think she's ever slept through the night!) Anyway, my question is how conclusive are the ttg and ema tests? Any thoughts would be appreciated!

Sue

[Emme999]

Sue,

Hello. 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 helped!

It sounds to me like your daughter has non-celiac gluten sensitivity - which means that both of your doctors are right Are you aware that gluten sensitivity and celiac disease aren't necessarily the same thing? (I don't mean to sound condescending, I didn't know much about it before I started studying )

Here's a little more from the book:

"Research into human genes now reveals that non-celiac gluten sensitivity, or immune reactions to gluten, may affect as many as 90 million Americans. The evidence suggests that these gluten-sensitive individuals face many of the same hazards associated with untreated celiac disease. ... Gluten sensitivity is much more common, yet is is sought and diagnosed even less frequently than celiac disease."

Obviously your little girl is having an immune response to gluten (since her IgG's and IgA's were elevated). This is a sign that something in her body is not happy when she eats those foods, and probably doesn't help her digestive system much. Also, when you eat something you have a reaction to - it causes a lot of inflammatory conditions, and might be adding to her anxiety (in the form of night terrors). If she was mine, I would probably keep her away from gluten and dairy as much as possible.

Good luck!

- Michelle

[stomica]

Hey Michelle - Sorry I'm so delinquint in responding, but I've been out of town...Anyway, I wanted to thank you for your response! The information has been very helpful. It's always nice to know there are actual facts out there! Thanks again!

Sue