HIghest tTG numbers at diagnosis - correlation to level of gut damage?

[Kate333]

Hi all.  I am a newly diagnosed member.  And have a few Qs:

1.  What was your highest tTG test number (when first diagnosed) vs. your lowest now that you are on a gluten-free diet?  My first # was 224.  I have been gluten-free for 6 months and my last 2 readings were 73 and 81.  I guess I should count myself lucky because I have heard that some folks had readings into the high hundreds/thousands and at least my numbers are coming down although not as quickly to "normal" as I would like...Can blood test numbers fluctuate on a gluten-free diet (assuming no "accidental" G exposure) or should I expect just a steady decline to normal range?

2. Is there a correlation between initial tTG numbers (pre-diagnosis/gluten-free diet) and how much your small intestine was damaged at time of diagnosis?  I ask because my initial gut video pictures and gut biopsies were essentially negative (showing only "mild inflammation...no celiac sprue" or other damage)..But I assume there was some damage somewhere deeper down because my doctor said only part of the small intestine is scoped, not the entire thing.  I requested one of those newer "pill cams" that views the ENTIRE gut, but he declined  How frequently did you get EGDs/biopsies after the initial diagnosis?

3.  How long after you started on a gluten-free diet before you noticed significant changes/improvements in your digestion and health?  For almost a year, I have had DAILY digestion issues/"irregular" BMs and other symptoms.  If I could actually see evidence ("before and after" gut pix for example) that actually shows healing as time passes, it would be VERY reassuring and give me hope that my continued symptoms are likely influenced by stress, not just old G exposure...and that some real gut healing is happening even though tTG numbers are not declining as fast as I would like.  And, yes, I know recovery is for many adults a "long haul".   

Thanks for any comments.  

 

[RMJ]

The TTG numbers are expressed in arbitrary units which are not the same for all manufacturers of the tests. Therefore they can’t always be compared between labs.

The TTG numbers are also not intended to indicate the degree of intestinal damage.  The tests are evaluated by the FDA just looking for a correlation between a positive test and a positive biopsy, or a positive test and another manufacturer’s positive test, without any degree of how positive for either one.

There are some manufacturers that give a range for weak positive  or equivocal as well as positive.  I looked at some of the FDA evaluations of these tests. They still did not compare the results to damage seen in a biopsy.  

[cyclinglady]

1. I never had a positive TTG (IgA or IgG) or EMA ever (even on many repeats).  Positive only the DGP IgA which was around 86, but repeat tests later after suspected gluten exposures were “off the chart”.  My biopsies were a Marsh Stage IIIB.  The blood tests were designed to help diagnose celiac disease and not for dietary compliance.  But they are the only non-evasive, tool-in the toolbox, so doctors use them.   They look for a downward trend.

2.   My DGP IgA was still very elevated when I had a repeat endoscopy and I had healed.  Healthy happy villi.  My GI went in deep.  My symptoms?  I had weird GERD like symptoms which turned out to be autoimmune gastritis.  That repeat took place five years later when I spent a year struggling with symptoms that started as a gluten exposure (unknown source), tooth infection, a cold and then the flu all within weeks.  Normal gluten reactions lasting for over a month and autoimmunity hives for six months.  Learned that not all things are due to celiac disease.  

3.  Two or three months, but my hubby was gluten free 12 years before my dx.  I knew the diet well.  My anemia resolved which is what my doctor checked rather than repeating the antibodies tests.  It still took about a year for me to feel really well after my initial diagnosis.  
 

I would worry more about lack of significant improvement after six months.  It does take time to heal, but you seem to be dietary compliant.  It could be some intolerances, but maybe a second opinion would be prudent.  
 

Edited June 28, 2020 by cyclinglady