Blood Testing for Toddler Q

[mollianderson224]

Hello! I just got the go ahead to get my 16mo old tested for Celiac. It runs in my husband’s family, and my son has had a lot of the same symptoms his aunts and uncles had when they were young prediagnosis.

Prior to the orders being put in by our doc for the labs, I took gluten out of my son’s diet for about a week in a desperate effort to help him feel better. But now I know he needs to be ingesting gluten for testing to be accurate. I’m just wondering if a week without gluten was long enough to affect the antibodies to get him tested in the next few days. I did give him some toast to snack on tonight after our doctor’s appointment. 
 

Is a week gluten free long enough to need a more strict gluten test before I get his labs drawn?

 

Thanks!

[trents]

Welcome to the forum, @mollianderson224! A week off of gluten is not ideal before the testing but it may not invalidate the tests. Kind of depends on the levels of the antibodies to begin with. If they are borderline then it could create a false negative.

Do you know what test or test were ordered by the doctor? Young children's immune systems are immature and often do not respond to gluten in the same way as adults when it comes to producing antibodies. Young children are often deficient in total IGA which will skew the test results toward negative. So, to include total IGA in the tests ordered is very important for this age group.

Unfortunately, many doctors are not up to speed with regard to gluten disorders and are operating on very outdated information. The most popular test ordered by most physicians is the tTG-IGA. It is relatively inexpensive, specific and sensitive - for adults, that is. Ideally for young children, total IGA should be added into the testing as well as some secondary tests such as DGP-IgA and DGP-IgG. The secondary tests often catch celiac disease in children whose immunes systems are responding atypically . A "full celiac panel" like this has considerable value when diagnosing celiac disease in children. Here is a primer for testing: 

What one test misses, another may catch.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but for which there is no testing available yet. It is 10x more common than celiac disease and some experts feel it can be a precursor to the development of celiac disease. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. At the end of the day, however, the antidote for both is the same: lifelong total avoidance of gluten.

Keep us posted.

Edited December 5, 2023 by trents

[Scott Adams]

I agree with @trents and skipping gluten for any period of time before a blood screening for celiac disease could create a false negative result. That said, I would not cancel the test if only 1 week were skipped, and would get him back on gluten daily until the blood is drawn. If he happens to test negative, be sure to look at the actual results--for example if the cut off is 5 for positive and he scores 4 it likely means he would have been positive had you not skipped a week of gluten.