8 year old - further testing after positive bloods?

[eekunique]

just got results back for my 8 year old:

Tissue Transglutaminase IgA * 14.00 U/mL (0 - 10)

Deamidated Gliadin Abs (IgG) 7.9

Negative : <7 U/ml
Equivocal: 7 - 10 U/ml
Positive : >10 U/ml

Will the NHS do further testing or will that be enough to assume Coeliac? Will they want to do an endoscopy on an 8 year old?

He doesn't have classic symptoms but I pushed for it due to joint pain so I knew there was some inflammation going on. He gets occasional sharp pain in abdomen.

Thank you.

[Scott Adams]

It looks like your child has a positive tTg test result, and what may be a weak positive for the Deamidated Gliadin Abs.

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.

 

 

PS - Your doctor will likely schedule an endoscopy for confirmation, be sure your child keeps eating gluten until all tests are completed.

[eekunique]

Thanks. They did the endomysial too which has just come back today as positive. 

Seems a shame to have to do such an invasive test next on such a small human.

[scowt1]

I'm sorry your son likely has Celiac Disease and totally understand your concerns about an invasive procedure.

We were on the same path last year. My 10-year old daughter was already small and not growing/gaining weight. Her pediatrician ordered blood tests, which came back positive on two measures for Celiac Disease (If she had several indicators, including the rash, we might have been able to skip the procedure, but that was not the case).

The doctor scheduled an endoscopy and really didn't leave room for discussion. Our daughter was anxious, of course, but the doctor explained everything, including that she would be under for only about 10 minutes. She did just fine and the biopsy confirmed considerable damage (3c out of a 1 to 4 with 4 being the most severe) to her small intestine. 

Here's the thing: I am glad we are 100% certain because sticking to a gluten-free diet at the level required for a Celiac can be challenging (especially vacations, group dinners, camp, etc). It would be easy to think, "Well, just this once, after all, maybe she's not...". We know, she knows and we've all accepted and gotten on with it. 

Whatever you decide, I do hope your son will feel better after going gluten-free. It must be so hard for your son to experience joint pain and for you to know this is happening to him. 

Jeannie 

 

[eekunique]

Thank you so much for this. Really useful to hear. 

[Scott Adams]

I would also like to mention that it's possible for the biopsy to be negative for celiac disease. In some cases, especially in children, there can be discrepancies between blood test results and the findings in an endoscopy/biopsy. It is possible for a child to have positive blood tests for celiac disease, such as elevated tissue transglutaminase IgA (tTg-IgA) and deamidated gliadin antibodies, while the endoscopy/biopsy does not show the characteristic damage to the small intestine (villous atrophy) associated with celiac disease.

There are several reasons for this discrepancy. First, the distribution of damage in the small intestine may be patchy, and the biopsy samples might miss the affected areas. Second, early stages of celiac disease may not manifest as significant damage visible through endoscopy (you caught it early). Third, there could be other causes for the positive blood tests, such as non-celiac gluten sensitivity or transient elevations in antibodies.

In some cases, a gluten-free diet may still be recommended even with inconclusive biopsy results if there is a strong suspicion of celiac disease based on other factors. It's important to have thorough discussions with the healthcare team to make informed decisions about dietary management.

[eekunique]

Thanks