Fluctuating results - help

[eekunique]

My son 8 year old had Ttg 14 (0-10) and positive endomysial. Joint pains and stomach ache. 

A month later retested, at this point in time he had no joint pains or stomach aches. Still eating same amount of gluten (diet not changed). Ttg < 2 and negative endomysial. 

Can anyone explain this?

Could it be something other than coeliac?

How accurate is endomysial? 

Can coeliac flare like this early on in the disease?

Thanks.

[Scott Adams]

The tTg-IgA test is not ideal for younger people, and if his was positive it could definitely mean that he has celiac disease, especially given his symptoms.  Was he ever scheduled for an endoscopy?

Children should also be given the DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide) blood tests for celiac disease, as they are more accurate in younger people.

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.

 

 

[eekunique]

4 minutes ago, Scott Adams said:

The tTg-IgA test is not ideal for younger people

Ah I didn't know this... Is it not as accurate for children? 

 

 

[eekunique]

5 minutes ago, Scott Adams said:

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

Yes IgA was tested in both and came back as 0.53 first time and 0.58 second time. Range 0.35-3.05). 

IgG was only tested the first time which came back as "equivocal" at 7.9 (Range: negative <7, equivocal 7-10, positive > 10)

 

do you think the IgA is lowish? Or ok for an accurate result?

[Scott Adams]

1 hour ago, eekunique said:

Ah I didn't know this... Is it not as accurate for children? 

A positive result would be accurate, but there is more of a chance of false negative results in younger people because their immune systems may not be fully developed. Also, his total IgA seems on the low side of normal, which may also have an effect on his results (low IgA can cause false negative tTg-IgA readings, or readings that are lower than normal). You still have a positive tTg-IgA test result, which means he could definitely have celiac disease, or at the very least, non-celiac gluten sensitivity. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Was he eating at least two slices of wheat bread daily for 6-8 weeks before the test? If not, this can also cause lower levels. Also, he needs to keep eating high levels of gluten daily until all testing is completed, or it could cause false negative results.