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another GF/CF thread, sorry

19 replies

misscutandstick · 04/07/2008 22:31

looked into past threads but couldnt find what i was looking for, sorry if i repeat others threads

DS5 (2yrs preDX - autism symptoms) has just been put on a dairy-free diet (is that the same as CF?). Any ways its going OKish so far, apart from today when sorbet wasnt nearly as good looking as everyone elses cornetto's and meltdown ensued. Although its only been 5/6 days... he does seem slightly more "deliberate", or maybe im just seeing stuff i want to

How many people have their childrens diets restricted? and what effect would you say it has? Although the dietician only advised dairy-free, does gluten free generally improve the situation further, as these intolerances may be linked in some way?

Sorry its such a generalised question...

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misscutandstick · 06/07/2008 21:05

are no-ones children on these diets?

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TotalChaos · 06/07/2008 21:23

there are definitely ladies on here whose kids are on the gf/cf diet - and who notice definite differences in their kids behaviour. Not quite the same, but DS used to drink ridiculous amounts of milk (4 pints per day), so once I cut it out I think he became more alert.

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sphil · 06/07/2008 22:26

DS2 is on cf/gf diet. He's been cf since he was a baby (and before we knew he was autistic) so I can't give you any helpful info about that. But since going gf (about 2 years ago) his sleep has improved dramatically - he used to wake several times a night and be very hyper. Having said that, this has worsened a bit again recently - doesn't wake much, but takes ages to get to sleep and it quite excitable.

I'm unsure really about the benefits for us. Ds2 has multiple food allergies/intolerances, so his diet is very restricted anyway. He has to be cf because of allergy - but whether being gf as well really has any effect - who knows? I'm too scared to take him off it now though!

Have you contacted the team at Sunderland University? They sent us a very helpful booklet about implementing the diet and the kinds of things to expect.

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misscutandstick · 07/07/2008 07:16

TC: 4 pints! goodness, must have got good teeth and bones tho!

Sphill: Havent even heard of the sunderland thing, dont suppose you have an email/number do you? if i could get any help at all it would be brill, are they doing research or something? thanks

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streakybacon · 07/07/2008 07:46

Sunderland University autism research here:

osiris.sunderland.ac.uk/autism/hplc.htm

They're really helpful, worth phoning or emailing for advice. The test was £60 when we got it done a couple of years ago, may have gone up since then, but if you have an understanding gp/paed you might get a referral and there'd be no charge.

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knat · 07/07/2008 13:15

dd has beenon a cf/gf diet for 21/2 weeks now. Its going ok and i did think we went through some withdrawal symptoms. There seems to be a little more clarity in her expressing herself and understanding (it comes in pockets but it is early days) Sleep has always been an issue - generally she's sleeping through better but like sphil she is taking ages to get too sleep even when she's completely knackered. I do thik its worth pursuing although i think it is restrictive when out and about. DD just noticing like when we went into town she wanted a cake and she couldn't have one. Wasn't satisfied with my alternative for her!!! (she's 4.8 by the way)

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TotalChaos · 07/07/2008 14:28

thanks for the link streaky. I've been toying with getting the test done. But because DS doesn't have a DX I tend to think about it, then just stick my head in the sand for a few months .

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streakybacon · 07/07/2008 17:36

I got the test done before ds had his dx. I tried him on the diet, didn't do anything at all for him tbh, but at least it was a box ticked and we could move on to try other things. It's worth considering - when it works it can do amazing things for our kids, but if it doesn't then at least you'll know and it's out of your head.

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Bricks · 14/07/2008 10:27

Hi,

TMy son is 33 months old and I changed him to GF/CF (dairy free) diet at 24 months and there has been a significant change. This may be a result of a combination of things as I am following a bio-medical intervention programme. If you want to understand it better then I am happy to talk about it at length. As the change is not just the diet but he had a physiological tests to understand what was happening and as well as the dietary change he is also ona programme of supplements as his body was deificemt ina number of essential vitamins, minerals and amino acids that assists with brain development. For initial reading have a look at www.treatingautism.ik.com/p_HOME406.ikml.

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pagwatch · 14/07/2008 14:21

my son went on the diet at three and ( once I was actually doing it properly) the change was significant and sustained.
He is still on the diet today aged 11.
He lost all aggression and started regaining significant skills including eye contact and speech. I can tell imediately if he has eaten something he shouldn't as he becomes highly emotional and upset and gets huge black circles under his eyes.
When I started it was very difficult as it was considered wacky and alternative - my dietician threatened to report me to social services if i tried it - but the support and practicality issues are hugely different now.
My Ds remains severe end of the spectrum but is loving and affectionate and this is a boy who was a danger to us and himself. He can read and talk well now and is a different child.

BTW there are much better alternatives to ice cream than sorbet - including home made ice cream.
I would also recommend getting Sumderland test done asap. It helps

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misscutandstick · 14/07/2008 16:16

Im a complete novice at the home-made ice-cream thing... whilst my no-holds-barred mega-calorie, full-fat, double thick cream, mint choc chip, home made stuff is to die for... dairy-free leaves me stranded! had a quick look in the chilled cabinets, but there doesnt seem to be the sort of thing i think im looking for... could you point me in the right direction please?

DS5 would gladly give at least 2 limbs for ice-cream, and would be eternally grateful for your advice.

Will definately take a look at the sunderland test site. Thanks

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notwavingjustironing · 14/07/2008 16:26

Try the Goodness Direct website. I'm not in the least bit techy and haven't a clue how to post a link but its got lots of lovely products on it. The ice-creams are dairy free. Hope this is of some use.

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misscutandstick · 14/07/2008 22:37

ideally i was looking for 'non-dairy cream' or something similar, is there a brand product? or am i barking up the wrong tree and should be looking at something different? I'd ideally like to make it rather than buy it. Thanks XXX

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emmalou78 · 15/07/2008 12:28

You can buy GFCF ice cream in Tesco's - its called Swiss Glace - it comes in eitrher vanila or neopolitan. My boys lOVE it. You can also get GFCF icecream cones - I think from Goodness Direct - or another SPecilaist website hat I can't rememebr teh name of.. They are bade by Barkat though.

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Bricks · 15/07/2008 18:04

My son also has the Swiss Glace and I have bought it in health food shops waitrose, sainsburys and tescos they do it in about 4 flavours and they even do one that looks and tastes like magnums. I have to say that if you do attempt the diet change get all your substitutes first as you can't really see the results without completely removing it from the diet but it was a noticeable change in 2 weeks for us. I also want to say it doesn't work for everyone. xxx

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pagwatch · 15/07/2008 19:21

ummm
i think that is swedish glace
(in case you are googling it)

only alternative to cream that i know of is called soya dream. comes in little cartons. I found it very soya-y which overwhelmed the flavour of home made - but then i couldn't add any strong flavours so fruit or choc may disguise it.

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misscutandstick · 17/07/2008 13:54

Thanks pagwatch - thats the info i think i was after. hmmm too soya-ey... might give it a go (if i can find it!) and then stick to the swiss stuff - which BTW i did manage to find in tesco's but ours only does the vanilla. still, if i stick some fruit syrup on it, it'll look like everyone elses!!!

thanks!!!

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Bricks · 25/07/2008 21:31

One final thing to mention, which I was advised by our bio medical centre. You need to track how many soya based products you use as soya based products have a high level of estrogen which research indicates can have a long term effect on male fertility. It just needs to be monitored. You have to make your own decisions and I don't want to influence any thing just let you know what I have learnt. www.healingdaily.com/detoxification-diet/soy.htm

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misscutandstick · 26/07/2008 13:03

thanks brick... GRRR if isnt one thing its another, thought we had it sussed! I use soya milk, yoghurts, and a couple of other things too. Guess i should have a look into this... will see what his dietician says too - shes good, she listens and shes very helpful. Thanks again will look into that. XXX

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