Sorry for using AIBU, but not sure that all coeliacs look in the woefully-misnamed allergies topic.
My 6yo DS was diagnosed coeliac 2 years ago, but his antibodies are not yet normal. They are low positive. He was off-the-scale at diagnosis with total villous atrophy, so it was expected that healing would take time, and his levels have dropped considerably since then. However his latest (Xmas) blood results were only marginally lower than the ones 6 months ago, so I am concerned that small amounts of gluten are creeping into his diet somewhere. If anyone can be bothered to read this long post, I would appreciate your advice as to where the problem might lie.
It is possible the last result was a blip (we think that there was an accidental very low-level cross-contamination glutening over Christmas while visiting relatives (he had a tummy ache and pale poo the next day) - tho' not sure that one incident like that would be enough to raise antibody levels?)
We are very strict about the diet. Totally gf at home for everyone so there should be no risk of cross-contamination. No oats, even gf ones. We hardly ever eat out (about once a month, usually Pizza Express and no symptoms after those occasions). At friends' houses he takes his own packed tea usually (the mums are scared of catering for him).
School provide cooked gf lunches. This is obviously a possible source of a problem but I don't want to rush into changing this - he loves the lunches, which are healthy and cooked on site, and hardly anyone else has packed lunches at school so it would be detrimental socially for him to stop. The staff are very careful, have had special training in gf food provision, and liaise with me continually (I provide some gf substitutes like bread, sausages and fishfingers).
He does not have any symptoms (tummy aches etc.) that I can link to times of having school lunches. They did make two mistakes in the very early days (and both times he had severe vomiting/tummy aches within 2-3 hours, which is also what's happened on the (very few) other accidental glutenings we know of outside school - the last one of those was over 9 months ago.
He has occasional tummy aches, which I cannot link to anything specific (usually weekend / holidays so don't seem to be linked to schol lunches, nor to any particular food that I can identify, nor to going out.) His poos also sometimes look pale (he doesn't let me check often so don't know how common this is for him! - they are solid though, not 'frothy' as they used to be pre-diagnosis). I am wondering if Codex wheat starch might be the problem - it is in his prescription bread (Glutafin Select). I have rung up today to ask for his prescription to be changed to the other Glutafin bread that doesn't contain Codex.
I have also rung the paediatrician to ask if we can have another blood test in a couple of months (with no Codex) to see if antibodies have gone down (and therefore the Christmas one was a blip) or whether we are still hovering at the same low-positive level. Should hear back in the next day or two. If we get a blood test soon and it shows no improvement then I think I will have to stop the school lunches and see if that helps.
If anyone has read on this far - and many thanks if you have! - does anyone have anything else to suggest?