Please help make sense of Celiac test for 3 year old

[Jamie1450]

Hi there, my now 4 year old was diagnosed at 18 months with Celiac Disease via blood test and vast improvement on a gluten-free diet. He was so sick and malnourished that his doctor advised us not to wait a moment and take him off gluten immediately. Fast forward 3 years and we are now testing our other children as well. My 3 year old has been tiny since birth (she was 34 weeks gestation), she was small but grew just fine. She was still in the 5th percentile for weight until about 2-2/12 years old. She is still thin but closer to average weight. She's has had problems with constipation since starting solid foods. Our whole family eats gluten-free at home, and she has only been eating gluten on a regular basis 1-2 times per week for about 6 months or so. I have now been giving her gluten about everyday for almost 1 month. Over the last couple weeks we have noticed that she is more tired, cranky and has really dark circles around her eyes. She also has had some diarrhea, with lighter stools and really strong chemically smell that we had with her brother. We thought that since she has been getting some gluten and then gluten everyday that she would have enough for an accurate blood test. Most of her tests are within a normal range but I'm still having a hard time making sense of it all. The doctor that one test was high but not sure which one she is referring to. Her doctor wants us to put her on full gluten-free diet and then reevaluate in a month. A part of me wants to keep her on gluten for a few more weeks and retest. Just like any parent, I just want what's best for her. Thank you!

[cyclinglady]

Based on the lab results you posted, it looks like she does NOT have celiac disease.  The TTG and the DGP were both under the range and her IGA deficiency test was normal making the other two tests valid.  

But...I am with you.  I think she might not have had  enough gluten in her system.  The standard (or at least what the University of Chicago recommends)  is 1 to 2 slices of bread daily for 8 to 12 weeks!  When I tested my daughter, I had her consuming gluten daily three months prior to help prevent.....DOUBT.  (She has tested negative so far.). 

Or...she might just starting and has not generated enough damage to show on the tests.  

Like your daughter, mine was in the 5% club until she was three.  She hit 10% by 5 years old and by the 3rd grade she hit and has remained at 50%.  So, I would not worry about the weight just yet!  I would be concerned about the dark circles. Does she have any allergies?  Have you eliminated milk?  (That will not affect future celiac testing.) it could be a source for constipation.  

You could keep her on gluten for another two months and re-test or go gluten free.  If she does well on the diet, will your doctor give her a formal diagnosis?  You could ask for the gentic test too.    Only you know your situation and what is best for your child.  

Glad to hear that your son is thriving!  

 

 

[nvsmom]

I agree. It looks like she does not have celiac disease.  The tests are not perefct for young children though, so if you suspect celiac disease, I would consider the gluten-free diet.