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questions about a "weak positive" TTG IgA level

Meg k

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Meg k Rookie
Meg k
Posted

Hi All. Last week after a blood test and biopsy I received a diagnosis of celiac disease. I have started the gluten free diet and right away called my kids' pediatrician to have their bloodwork done. Two of my kids were negative and my daughter (age 8) was a "weak positive" with a TTG IgA of 4. (My TTG IgA level was 250 when I was tested a week and a half ago-for refernece.). We are on vacation so I don't have more details from her pediatrician but we see a GI for her next week. 

Questions: Has anyone else gotten a weak positive? With me being Celiac, do you think her GI will recommend an endoscopy now or just to watch her? They said not to change her diet at this time (at least till we see the GI next week). Any advice on questions I should ask. I have read on other posts that even a weak positive is a positive for celiac disease - is that correct? 

Sidenote-As soon as I was diagnosed I started researching celiac disease in kids and suspected my daughter might have it. Her mood turned about 6 months ago and she is very highly irritable. She is often constipated (I was opposite) and her stomach often hurts. 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome to the forum!  

I am glad that you know where you stand.  Soon you will feel better.  

Your daughter?  I suspect she could very well have celiac disease or will develop it.  You could ask the GI for the complete celiac panel.  I know that I never test positive to the TTG.  Ask for the EMA and DGP as they might have higher elevations.    I know some doctors hate to give what they think is a  "life long" sentence to a child, but with your diagnosis, it is what it is.  You can also request a genetic test.  Finally, an endoscopy is 

Talk to the GI.  learn all you can about celiac disease.  Then you will be able to make a good decision on how to best handle her care.  

i wish you well.  

nmlove Contributor
nmlove
Posted

Hi there. I second cyclinglady. For what it's worth, my sons were diagnosed at 2 and 4 (VERY positive). The oldest was the only one who had an endoscopy, but GI doc at the time diagnosed my youngest son due to numbers and brother's diagnosis. Fast forward a few years and I was positive. I check my daughters annually and a little over a year ago, my oldest daughter (just turned 5) had a weak positive so GI doc was fine diagnosing her. She said otherwise she would look at other things. All were negative for her except Ttg IgA. Doc said positive EMA usually correlates to villi destruction so she didn't feel an endoscopy was necessary. Also, my daughters both have genetic markers. We had them tested for a research project.

  • 2 weeks later...
Meg k Rookie
Meg k
Posted
  • Author

I just wanted to give an update. My daughter had an endoscopy and biopsy results (and visual day of) show she also has Celiac Disease. I'm glad we went through w/ the testing but sad she also has celiac disease...diagnosed less than 3 weeks after me.

cyclinglady Grand Master
cyclinglady
Posted

I am so sorry that your daughter was diagnosed with celiac disease so shortly after your diagnosis.  But it is good that it was caught early enough in her life.  She can reverse things like bone damage, that I can not (past menopause).  You both will not be alone.

My kid needs to be retested.  She has some odd symptoms, but no irritability which is a sure sign of a glutening for both me and her Dad.  She HATES to have her blood drawn.  Plus, I really need to beef up her gluten diet Prior to testing as she is gluten light (our house is 100% gluten-free).  

Just curious, what was her intestinal damage like?  Did pathologist assign a marsh stage? 

Your TTG was very high and your daughter's was barely positive.  Did the damage correlate with the antibodies levels or not?  

Hang in there!  

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