Testing

[Deborah123]

My 5 year old had the blood test in August 2023, which came back negative.   We just had a well-visit & he has lost weight over the last 6 months. 

My new Dr thinks its ENT issues causing his irritability & fatigue.  We recently switched pediatricians, and I'm not sure how much to push for a celiac re-test.  Obviously I'm not a Dr, but my gut feeling here is to re-test.  How common are false negatives & how much should I be pushing my Dr to prescribe a re-rest? 

 

[knitty kitty]

Hello, @Deborah123,

Which blood tests for Celiac did your son have?  TTg IgA tests may throw false negatives in children because of immature immune systems.  That's why a complete Celiac panel should be done which includes total IgA, tTg IgA, DGP IgA and DGP IgG and tTg IgG.   

Insufficient gluten consumption in the weeks prior to testing can result in false negatives as well.  Updated gluten challenge guidelines call for TEN grams of gluten per day (equivalent to five or six slices of bread or equivalent) for a minimum of two weeks prior to testing.  

Also, low iron levels and anemia can result in false negatives.  Has your son's iron levels been checked?  Vitamin D and thiamine levels should be checked as well.

You may want to consider genetic testing for both you and your son, as celiac disease is genetic.

Yes, your mother's instincts are correct.  Keep pushing for more testing!  

Keep us posted on your progress!  

[Scott Adams]

The past symptoms you posted in the thread below are definitely worrisome, and could be celiac disease symptoms. I agree that a full blood panel needs to be done.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.