Please help those with coeliac or avoiding wheat/gluten...

[wangle99]

As previously posted DS is treated as coeliac due to symptoms although tests negative. We have been doing fine no contamination and its all under control however over the last couple of weeks the symptoms have come back and we cannot work out why. It can't be within the food we are giving him or cooking as i have been checking EVERYTHING.

Currently removing his cutlery from the cutlery drawer and keeping it in a sealed container (am wondering if perhaps crumbs falling into the drawer), we are being more scrupulous before giving him food ie washing our hands even more carefully than before.

Is there anything I could be missing? He has fruit at break at school - I wonder if someone could have something on their hands and then he's eating fruit with it on. Am clutching at straws here but I cannot work out what is causing it and am so frustrated.

Also now removing food that has 'prepared in a wheat area' as before that didn't seem an issue but now am thinking perhaps it is.

Appreciate any ideas even if they sound silly to you, am getting desperate!

Thank you

Just wanted to say good luck Wangle

Sorry to hear you are having problems. I would try avoiding anything derived from wheat even if claimed to be glutenfree and safe for coeliacs as many coeliacs cannot tolerate them either because of the minute amount of gluten they contain or because they have become sensitive to wheat itself. So try cutting out glucose syrup (unless you know it is derived from corn), maltodextrin is also often derived from wheat (though can be from corn or potato), and barley malt (which you probably avoid already though some products with it in are described as safe for coeliacs as it is at a very low level).

Also even if using gluten free foods (i.e. below 200 ppm, soon to be 20 ppm) you can have too much - initially the recommendation for an adult was a maximum of six slices of bread a day (or equivalent in biscuits, rolls, pasta etc.) so it's worth looking at the amount of gf stuff he eats - obviously if you are using products already down to the 20 ppm level he can have more of those without problems.

After going gf my son developed an intolerance to egg, and I have heard this from other coeliacs as well, so it would be worth keeping an eye out to see if egg could be causing his problems.

Hope you can find out what is causing the problem.