Wait to go gluten-free until after endoscope?

[bhlowe]

Hi there! So, based on a ttg iga tests, my sons (14) are positive for celiac. However, due to insurance issues, I expect it will be a couple of months before we can get an endoscopy for them. Would it be better for them to go gluten-free for the next 6-10 weeks and then go back on gluten for the 2 weeks before the endoscope? Or should we just wait until all the testing is done to start their gluten-free diets? Obviously they would like to wait, and they feel mostly fine (just low iron)... but.... I guess I'm just wondering if waiting 2ish months will/could negatively impact their lifelong health?

THanks. Beth

[trents]

Welcome to the forum, belowe!

I doubt if delaying gluten free eating until after the biopsy would have a long term impact on their health at their young, resilient age. The Mayo Clinic recommends the daily consumption of two slices of wheat bread (or the gluten equivalent) leading up to either kind of testing so if that would represent cutting back on their current amount of gluten intake, that is an option. The problem with going gluten free and then reinstating gluten in time to give valid tests is that once you cut it out, you tend to get more intense reactions to gluten than before. You lose whatever tolerance you once had. Having said all that, since they are asymptomatic, I would delay the gluten-free diet until after all testing is complete.

By the way, including antibody test numbers without reference ranges is not very helpful since every lab uses different reference ranges. Without that, it's hard to know whether 14 is a strong positive or a weak one.

[bhlowe]

I meant my boys are 14 years old... they are twins. Sorry I wasn't clear. The tests they took had a standard range of <15. Their numbers were like 60 for one twin and 25 for the other... identical twins. 
Thank you so much for the quick and clear response.

[trents]

I would also add that you and the boys' father need to be test for celiac disease. There is almost a 50% chance that the boys' first degree relatives will have or will develop active celiac disease. They got the genes from you and/or their father. About 40% of the general population carries one or both celiac genes, which only establishes the potential to develop celiac disease since only 1-2% of the general population will actually develop active celiac disease. However, having a first degree relative with active celiac disease dramatically pushes up the odds to almost 50% of developing active celiac disease for the others in the family.

Edit: And of that 50%, half of those will be asymptomatic at time of diagnosis.

Edited December 27, 2022 by trents