high ttg

[Nikko]

Hi, 

My 8 year old daughter just got bloodwork showing a ttg of 160 but normal gliadin. Her GI wants to do biopsy. I was under impression levels above 100 were positively predictive of celiac but he was much more vague. She does not show signs of inflammation (stomach pains or diarrhea) but is quite underweight despite our best efforts and has chronic constipation. If her biopsy is negative he said to wait 6 months, retest blood, and then potentially do more endoscopies to monitor. Can there be false positives based on ttg? Would a level that high at least mean something (eg, intolerance even if not full blown celiac)? And I know the biopsy is considered the gold standard but is it possible to miss damaged area if she is in the beginning stages? I'm not comfortable letting damage occur to get to the point of knowing for sure it's celiac. Thank you for any input. 

[cyclinglady]

48 minutes ago, Nikko said:

Hi, 

My 8 year old daughter just got bloodwork showing a ttg of 160 but normal gliadin. Her GI wants to do biopsy. I was under impression levels above 100 were positively predictive of celiac but he was much more vague. She does not show signs of inflammation (stomach pains or diarrhea) but is quite underweight despite our best efforts and has chronic constipation. If her biopsy is negative he said to wait 6 months, retest blood, and then potentially do more endoscopies to monitor. Can there be false positives based on ttg? Would a level that high at least mean something (eg, intolerance even if not full blown celiac)? And I know the biopsy is considered the gold standard but is it possible to miss damaged area if she is in the beginning stages? I'm not comfortable letting damage occur to get to the point of knowing for sure it's celiac. Thank you for any input. 

It sounds like your GI is following  the normal algorithm for diagnosing celiac disease.   If anyone tests positive on a celiac panel (and it only takes one positive out the entire celiac panel), then the recommendation is to go forward with an endoscopy.  Some GI's in Europe are skipping this step, but certain criteria must be met.  This is not well supported in the US yet.  

It is possible to miss areas of the small intestine for damage.  The small intestine is the size of a tennis court, but an endoscopy/biopsy can rule out other illnesses (e.g. SIBO, H. Pylori, etc.).  You should make sure your GI takes four to six samples in certain areas.  Just confirm with him/her.  It sounds like he/she is knowledgeable.  There is false positives, but that result is pretty high.  Other AI issues (or illnesses like LYME disease)  can raise TTG levels, but I don't think by that much, but I am not a doctor!  As a mom, I would be worried too about letting my kid get sicker, but unfortunately, celiac disease can be tough to catch in early stages.  I'm sorry!  

Here is my personal story.  I am little (all my life).  I have been anemic since they started taking blood from me (as an adult).  I have a genetic anemia that masked an iron-deficiency anemia that we now know was celiac disease related.  I had no abdominal issues at all.  I test positive to ONLY the DGP (even in follow-up testing) in the celiac panel, yet my biopsies revealed moderate to severe damage (Marsh Stage IIIB).  (My GI's can not explain the reason for this and I can find very little about this on the internet either).   So, one positive is worth investigating with a biopsy.  I needed the biopsy because I was shocked that I tested positive and I did not fit the classic celiac person.  

Keep researching.  It sounds like your GI knows what she/he is doing and that is half the battle!  

 

 

[Nikko]

Thank you, I appreciate your input, it is very helpful.