Jump to content
  • 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
      132,919
    • Most Online (within 30 mins)
      7,748

    globello
    Newest Member
    globello
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.