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Is little bit of Gluten ok?

(20 Posts)
want2sleep Fri 03-Dec-10 17:40:21

Bought some 'Jelly Tots' by Nestle for DS for Xmas as fed up of the limited choc/sweets diet at this time of year.

Phoned Nestle and they said because of the low level of Gluten it is ok if Cealiac...but ds not just 99% postive on the urine test at Sunderland....and behaviours go worse and poos+++

Any experience on these 'low' gluten foods...are they ok?

silverfrog Fri 03-Dec-10 17:53:31

sorry, but I wouldn't give them to dd1.

I know Lakeland are doing some gelatine (usually has MSG in it so no go for gf/cf) free Jelly Beans this year - might be worth a loo at those?

otherwise, holland and Barratt usually have some haribo tpye sweets in that are natural, gelatine free etc.

Check out Dietary needs Direct too (if they are ever able to eliver again, given all the snow!), they might have somehting.

silverfrog Fri 03-Dec-10 17:54:10

god, masses of typos, sorry! am typing on ipod...

HecTheHallsWithBoughsOfHolly Fri 03-Dec-10 17:56:08

I don't risk it. We also did the urine test via sunderland.

The difference when they came off gluten was amazing! And if they accidentally have a bit I can really tell!

Do you get it on prescription? I went to my gp with the test results and they get all their gf stuff on prescription now. Saves me a bloody fortune!

silverfrog Fri 03-Dec-10 18:02:11

envy Hecate

I haven't managed to persuade any of our docs over the last 4 years (have moved around a bit!) to give us gf stuff on prescription

but agree, I can always tell if dd1 has managed to eat something she shouldn't.

The way it was described ot me is that coeliacs have a tolerance level of gluten acceptable in foods (obviously this varies person by person, but the accepted food standard has the tolerance level), but there is NO tolerance level for gf/cf

HecTheHallsWithBoughsOfHolly Fri 03-Dec-10 18:06:16

really? That's awful. I went in with the results and with a prescription sheet of another child with autism who was already getting gf stuff on prescription and said that it was a medical need and children with gluten intolerance were getting stuff on prescription, look. grin

If you want, I'll happily send you my childrens repeat sheets and you can see if that will help? sometimes if they know it's already being done, they might soften.

silverfrog Fri 03-Dec-10 18:13:31

oh, I've given up trying, but thank you very much anyway smile

it's only really bread and luxury goods items, like chocolate and sweets etc that we buy anyway.

mostly, dd1 eats basic foods - spag bol, etc and plain fruit for pudding.

dh is dairy intolerant too, as is dd2, so we have to have decent choc for them, and Free from sauces for fish pie etc - we have to buy them anyway for dh/dd2 - can't think what i'd ask for now anyway grin

<actually, that would be interesting, if you don't mind me asking - what sort of stuff do yuo get/ask for?>

HecTheHallsWithBoughsOfHolly Fri 03-Dec-10 18:17:57

fresh bread, spaghetti, fusilli, cake mix, flour, several types of biscuits, pizza bases, bread rolls, crispbread... basically anything that's on the list of prescription foods for coeliacs, I can order.

silverfrog Fri 03-Dec-10 18:23:43

yes, I remembered after I posted that pasta etc were included - dd1 doesn't do well on them, so no longer has pasta.

same for biscuits/cakes etc. she can't tolerate lots of sugar, so need ot restrict those...

poor girl is really hard done by grin, but at least she can talk now grin grin

still, we make up for it with fruits - she gets berries/summer fruits all year round, and I have just introduced her to the delights of pomegranate ("red seeds" according to her!)

so it's really only the bread rolls we'd want, I suppose.

HecTheHallsWithBoughsOfHolly Fri 03-Dec-10 18:26:56

yes, my youngest only started talking after he came off the gluten. Before that he was almost totally echolalic.

amazing, isn't it? You just wouldn't think that something in their diet could have such an affect - behaviour, speech (even helped a bit with the pooey pants!)

silverfrog Fri 03-Dec-10 18:33:39

oh it remains the single most important thing we have done for dd1.

she went gf/cf at just over 2.6, so 4 years ago now. she was totally echolalic beofrehand, with no pain response, and very shut away - everyhitng very much on her terms, not interested in othrs/the world around her.

within a month she was talking a bit (proper chatting stuff, not reciting the Gruffalo non-stop!), had a pain response (thank god I didn't have ot guess what she had done anymore!) but most importantly of all, she was interested in us and the rest of the world. she has become more and more social ever since, and these days, if it weren't for her langugae deay, she would often be taken for NT I think (until something sparked off an ASD special feature anyway grin)

being gf/cf has given her the space to think and the peace to be able to learn, which is just brilliant smile

oh, and on the poo front, we changed dd1's bread over the summer, and the difference has been amazing - better poo, and a lot more awareness - maybe in another couple of years she'll get there with the poo training grin

notapizzaeater Fri 03-Dec-10 21:09:45

My coeliac DS(8) has Rowntrees Randoms (These are GF), M&S Pigs (and most of there "jelly" type sweets), some of the Tesco ones and we've never had them but Aldi has lots of jelly GF sweets.

If still reacting on "low" GF sweets it might be the maltodextrin - this can come from corn or wheat - in the UK they do not have to state so it can catch you out.

ihavenewsockson Fri 03-Dec-10 21:36:58

This is really interesting, I've been looking into going GF/CF to see if it improves DS1's speech and language delay and helps with his ASD.

I have an appointment wiht GP next week to talk it over, how long does the sunderland test take?

want2sleep Sat 04-Dec-10 10:45:05

Thank you Silverfrog as I don't want to let all hard work ds has been on for 3yrs as was always confused over this "low" Gluten and never tried ds on these type stuff....glad I never did now. That is amazing about your dd language though with the dietshock brilliant news.
All I notice with DS is as ate Playdough was poos++ and sandy colour 'giggly' and just naughty and 'high' for weeks so don't want to risk it now.
notapizza I always thought "maltodextrin" was milk blush so never gave it thankfully as ds milkk free too [phewieee], will look for those pigs sound yummy and Dietry Needs Direct.

HecTheHallsWithBoughsOfHolly Sat 04-Dec-10 14:28:39

ihavenewsockson - results take a couple of weeks to come back.

You don't need to go through your gp.

It costs - I think it was £60 each.

notapizzaeater Sat 04-Dec-10 22:54:46

Playdough has gluten in - I have a recipe for a gluten free version if it helps.

want2sleep Sun 05-Dec-10 09:41:36

that would be good can you post it on here or PM me please notapizza

notapizzaeater Sun 05-Dec-10 12:21:19

GF Playdough :

(1 cup = 8oz)

1 cup rice flour
1 cup cornflour
1 cup salt
4 tsps cream of tarter
2 cups of water
2 tbsp vegetable oil
food colouring

put all ingredients in a saucepan and cook over a low heat for 5 minutes, stir well, mixture will be very runny but will firm up. Remove from heat and knead to remove lumps.
Roll into a ball and store in an air tight container, keeps up to 7 months.

want2sleep Sun 05-Dec-10 19:46:40

thank you notapizzaeater(is that because you are dairy free as well as glutengrin)
I have all the ingredients shock from failed attempts of breads and cakes grin

Sounds like ds will enjoy this...goig to do it as a science experiment thanks have helped me with two things at once grin xx

notapizzaeater Sun 05-Dec-10 20:33:23

DS kept getting glutened at school with the play dough - so sent the recipe in. Reaction time in DS os about 2 hours so can always track it back !

Thankfully we are ok with dairy smile

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