Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


stomica

Recommended Posts

stomica Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Emme999 Enthusiast

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 :wub:

stomica Rookie

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,244
    • Most Online (within 30 mins)
      7,748

    Barbara carter
    Newest Member
    Barbara carter
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      No, I would not say this at all. If you were diagnosed with celiac disease and were gluten-free for a while, you could have gone into remission. Everyone's body is different, and some celiacs may be able to get regular contamination and not end up with damaged villi and positive antibody tests, while others who ingest tiny amounts will relapse and have full blown symptoms and flattened villi.  Only a full gluten challenge would reveal where you are at this point. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Pablohoyasaxa
      Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 
    • knitty kitty
      I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.   I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to...
    • meghanf
      We have a gluten-free household. It's the least stressful option. No one else in my family has Celiac, but they are all extremely supportive. We don't even have Play-doh for this kids.
×
×
  • Create New...