Barley malt extract and celiac kids

[Lawabidingmama]

DD is 2.5 she's been diagnosed since feb we've adjusted well only we struggle with cereal she likes sainsburys gf oat free porridge and will eat the gf rice crispies etc but it's hard for us to get hold of these products as we don't have a local sainsburys. The celiac uk book says its ok to give certain own brand cereals containing barley malt as the levels are so low whats the general consensious on this?

Barley malt extract on cornflakes is too much for me too and GF cornflakes are not nice.

I make my own GF muesli and GF oat porridge. I also make things like banana loaf, GF scones, as well as eat eggs at breakfast and occassionally GF bread toasted just to ring the changes.

It depends on the brand and the individual but most coeliacs can tolerate the very low levels in most supermarket own brand cereals (as listed in the Coeliac Uk book). Kellogg's are no good as they contain higher levels of barley malt but the ones listed in the book should be fine.

Sadly my DD is 'super sensitive' and can't tolerate even these levels (she can't even tolerate Codex wheat starch in certain gf products). We were also warned by dietician to avoid all oats (even gf) at least for the 1st year as the protein in oats is so similar to gluten and has been shown in some research to produce the same damage to the gut but without the obvious symptoms. The jury's still out on gf oats for coeliacs who have been gf for at least a year but I'm pretty sure most newly diagnosed coeliacs are advised to avoid for first 12 mths.

My ds is super sensitive too he can't have supermarket cereals. He loves doves choc stars and natures path Mesa sunrise.

We where told to avoid oats for at least a year then a max 25g gf oats 3 times a week, although I haven't dared yet

I will be sticking to the gf brands then I guess not worth the risk we are also oat free the porridge she has is a blend of rice and seeds I will be staying clear of oats till she is more aware of her condition and able to tell us if she hs symptoms

Also freefrom what symptoms does your dd have after codex wheat starch as this is something else we've avoided given her age but I though it was ok for all cd sufferers is your dd wheat allergic as well?

As I understand it, while Codex wheat starch has had almost all the gluten 'flushed out', there is generally still a very tiny amount left that is considered within 'safe' levels for the majority of coeliacs except those that are super sensitive. Basically, my DD was diagnosed in the April and went gf straight away. By August her symptoms had almost completely gone but started gradually creeping back again (tummy ache, lethargy, pale, dry skin). We were sure that no gluten was getting in to her diet so dietician suggested trying dairy free for a while but that made no difference so she then suggested cutting out Codex wheat starch and all barley malt (even 'safe' levels) and this made all her symptoms disappear. She's not allergic to wheat (my DS is but that's another story!).

I have avoided those cereals with barley malt as I saw a post ages ago on here and it just put me off. My ds has been gf for over a yr, he recently had some biscuits from Co op with gf oats- and was pretty tired/had diarrhoea for 3 days- I strongly suspect the oats, leaving them out again until he's older it's not worth the risk. (at diagnosis he was very severe). I find it very stressful with his age - he's just 4. If he's tired or his poo is a funny colour immediately I'm worried I've contaminated him, and you don't get clear answers from LOs when you ask 'does your tummy hurt...'. So generally I avoid stuff if I can if there's any risk.
The choc stars are nice, and orgran do some choc rings- but not exactly healthy!! Doves farm do cereal flakes that are yummy and not so sweet, and whole earth do some yummy gf corm flakes in normal cereal section at waitrose. If you don't have good section in your supermarket try independent health food shops. Also Ocado have extended their range- you could periodically stock up with a delivery of products even if you have to pay few quid delivery.

We avoid the codex wheatstarch, if DS is "glutened" properly then we have uncontrollable running down his leg diahorrea, if he has codex/maltodextrin (and some Dextrose) we have what we call "leakage"

Its a nightmare but it does get easier