Anyone tried Gluten & casein free diet for asd with any positive results ?

[Mum1369]

Hi
My child is in the process of being diagnosed - although from all the evidence it seems likely that he has some form of asd. I am just looking for any strategies that anyone has used which have produced a good response ???

Sorry - just making sure I posted this correctly

hi, we have been using gf/cf free diet with our two boys aged 5 for about eight months now - i think DS1 who is less severely effected on the spectrum, is responding well, more sociable, more language, better eye contact and behaviour easier to manage - but on the other hand he is getting a little older and more mature and who knows what is the source of that? DS2 who is more severely autistic is really no different - so sorry that's not much of a help. It won't do your dc any harm I suppose to give it a go - the only thing negatively effected is our bank balance! I am definitely finding it more expensive but maybe you are better at home cooking etc, during the week I find I am using a lot of "Free from" stuff e.g. chicken bites etc which are more expensive than "normal".

friend has just started doing this with her son (about 3 weeks ago). it is pretty hard work, but they are seeing very gradual changes. they also have various supplements to take. you could look on the treating autism website for more info, www.treatingautism.co.uk/ . from that website you can also get on to a yahoo autismbiomedical europe group that has loads of info on it

it may also be worth googling 'retained reflexes' and then if the things listed there apply, try to find a snesory trained OT who can give you exercises to help integrate the relfexes.

Great - thanks for the input - just interested to hear what may / may not work. Did look at the supplements today as well - v.scary stuff - I think I would feel better with a dietitian (sp?) putting something together for this area - although maybe a GP could provide info on amounts. At the moment I'm just thinking anything is surely worth a try
You are certainly right about the bank balance ! I too am hopeless cook, so have stocked up on 'free from' too !
Are they ok to eat any fruit and veg - as long as it's fresh ?
improv - thanks for the links - will follow them through
He's only 2.5 at the moment so thinking an early start can do any harm

yes fine with all fruit and veg - have to say my kids would really struggle with absolutely no dairy - we looked on the web and goat's and sheeps cheese would seem to be lower in casein - so they get a little little amount of that - we use soya yoghurts which are fine and small amounts of goat's milk i.e. about quarter cup a day (if that). i am probably undoing all my good work in the gf but on balance, quality of life in terms of constant arguing about a little bit of goat's cheese/milk on cereal versus letting them have it occasionally - its worth it to me. look out for gluten on crisps sweets etc - its amazing what they put it in - the breads we have found most palatable with the boys are naan/pitta, etc rather than white sliced - none of these seems palatable at all! gf pasta they will eat with no difficulty - so the main meals are ok - just breakfast-y type things i struggle with sometimes.

Great top tips thanks !! I can see I am going to have my hands full...

I started DD 3.9 ASD on casein free about 3 months ago and gluten free a couple of months ago. She definately seems more sociable but at the same time she started nursery 4 times a week plus a communication group once a week and when you think about it she is also maturing anyway so it is hard to tell how or what has caused her to be more social. Her language is still quite disordered but I have heard that this can take a while to improve on a GF/CF diet anyway. Apparently it takes gluten 6 months to leave your body. I think you have nothing to lose by trying the diet only money as it is very expensive! Also, I did find that fish oils seemed to improve her concentration but they were giving her loose bowel movements (sorry probably tmi) so I decided to stop them. Good luck

I have a DS aged 3 who was diagnosed with ASD. He has been on the GF diet for 7 months. We also substitute cows milk for goats milk. Within 2 weeks we noticed a huge difference. He stopped stimming(used to constantly want to be doing headstands on the sofa and spinning round and round). He seemed much calmer and more receptive. I was a bit concerned that he wasn't getting a mixed diet so went to see dietician who gave her approval-he loves fruit, eggs and fish so quite a good diet.
I think its worth a try and although they say to give it 6 months, I think you may see a difference quicker than that.

Thanks - that all sounds really positive. Have been surfing the web for info (also a dangerous pastime) and it is incredibly interesting stuff about asd and intolerances - I'm amazed it is not more widely publicised. Obviously research is a bit hit and miss on it and it's not going to have an affect in all cases - but certainly worth a try I think

I think its quite an easy thing to try and pretty painless too.
Give it a go! See what happens.

Quick question....if I give him Rice milk which has calcium in it - do I need to also give him a calcium supplement ? Or can anyone reccommend a supplement for a child on a dairy free diet ?
Thanks ! You have all been a massive help !

Not sure as I stick with goats milk. Hopefully someone else will come along and help. Or make an appointment with your local NHS dietician?

I have a 7 year old ds who was given a verbal dx of Aspergers by a Paediatrician in January.

He has been gluten free since last November. We intially went gf with him because of digestive issues, rather than because of his ASD, so haven't gone casein free as his digestive issues all but resolved once we removed the gluten and he/we are vegetarian so going casein free would be a nightmare really.

We definitely noticed an improvement after an initial couple of weeks of hell (think it was withdrawal as he was big on wheat products before) then after about a month we noticed a much bigger improvement.

His eye contact improved a lot, he is much calmer generally, more sociable and demonstrative (hugs etc).

We have also been able to trace back any 'difficult periods' to inadvertent gluten intake so we're pretty sure its working for him.

A few weeks ago I was beside myself because his behaviour seemed to have deteriorated and if anything was worse than prior to the gf diet. Then we realised that we had been inadvertently giving him gluten on a regular basis over a three week period. We eliminated that source of gluten and he settled back down over a period of about two weeks.

The Paed we saw has arranged for him to be tested for Coeliacs in July and unfortunately he needs to have been back on a gluten inclusive diet for at least 3 months prior to the test. So, we have been slowly reintroducing gluten over the past fortnight and it has been awful. Last week he was over emotional (lots of tears and meltdowns and a great deal of extra tlc needed). This week he is struggling with eye contact and we are finding it increasingly hard to get/keep his attention. On top of that he has started bedwetting again this week and he hasn't done that the whole time he has been gf. (I think its due to inflammation of the bowel putting pressure on his bladder.)

To be honest we are at the point of cancelling the test and just keeping him gf, as we can't bear to keep feeding him something that is obviously having such a terrible negative effect on him both physically and emotionally.

The thing is, he's really looking forward to having 'normal food' at his birthday party in April. So now we don't know what to do.

Anyway, sorry for the detour, but in short, yes, in our opinion we have had a really positive result from removing gluten from our ds's diet.

Its not an easy option though. Gf food is really expensive and you have to become an obsessive label reader, as even things like malt vinegar have gluten in, as do some baking powders and other products you wouldn't expect to find it in. We also discovered that our ds reacts to oats as well as grains, which was unfortunate, as he had eaten porridge every morning since he was weaned up until we made that discovery!

Thanks Moose - that is really interesting as you have obvioulsy tracked reaction over a longer period. We should find out quite sooon what the dx is going to be. But continuing with GFCF and waiting to see what happens. What a shame you are having to re-introduce gluten, when it is having such a good effect - really feel for you. A lot of the time we are between a rock and a hard place aren't we ??
Hope it works out