gluten and casein free diet + ASD

[TheodoresMummy]

We are keen to embark on this journey with DS (nearly 5 and DX AS/HFA).

We hope to reduce his anxiety, anger, oppositional attitude and help his focus, attention and speech/conversation.

He used to have probs with his digestion, often being costipated or having very loose poos (sorry TMI ), but since we identified and eliminated kiwi and mango and greatly reduced chocolate from his diet, he hasn't had the problems.

I am wondering if the diet is less likely to help a child without digestive probs ?

Who here uses the diet and what results have you had ?

Did you cut out both gluten and casein together or in turn ?

The only thing that puts me off trying it is that DS eats really well and if we do it and we see no difference then he might not go back to eating some of the stuff he eats now (he only refuses brocolli !!).

Thanks for any advice you can offer.

I'll be watching this with interest as I'm seriously considering giving this a try for ds1 who is ASD, (probably Aspergers, but don't really know yet). Not sure if it's going to make any difference but I'm thinking it can't hurt to try (except everything costs twice as much gluten-free!)

He doesn't really have any digestive probs either.

Yes it will cost quite a bit more to feed him too, especially with the ammount he eats.

He currently has hot dinners at school. Does anyone know if they have to adhere to any special dietary requirements ? Or is it up to each school ? Not a prob to packed lunch obviously, but I do like him to have as many hot meals as poss.

hmm on the school front i rather feel they have to provide if thats what you require - but you have to have a meeting with the cook and work out between you what your child can and cant eat. its all to do with inclusion i think.

DS5 is gluten and casein free - but because he is intolerant to them, hes had alternating constipation and diarrea all his life... but i digress

I am told that its easier on the child if you go dairy free first, and then gluten. BUT it only works if you cut out ALL traces, that means reading EVERY lable and spotting the hidden ones too (ie. deli-meat sometimes has whey in it, the coating on crisps is a milkpowder base), milk comes under various lables and its good to know them before you start.

If it is going to help your child, you should see it within a week. Most often reported is a better ability to concentrate, more energy, more alert.

Gluten takes somewhat longer to be out of the system and to see any noticeable differences unless your child has a specific problem with it. DS5's diarrhea stopped overnight after removal of gluten.

Be aware the withdrawal symptoms (if your child is affected by gluten) are horrendous, but if this happens then its proof enough that your child should not be eating it. We had headbanging, facescratching, nipping and biting himself, and screaming constantly. that lasted nearly 2wks... after exhibiting that behaviour theres no way im giving it back to him any time soon!

so the choice is yours, it may not make any difference at all, and then (hopefully) go back to eating the way he used to, however, you really do have to remove any trace before you might see a difference

good luck XXX

hmm on the school front i rather feel they have to provide if thats what you require - but you have to have a meeting with the cook and work out between you what your child can and cant eat. its all to do with inclusion i think.

DS5 is gluten and casein free - but because he is intolerant to them, hes had alternating constipation and diarrea all his life... but i digress

I am told that its easier on the child if you go dairy free first, and then gluten. BUT it only works if you cut out ALL traces, that means reading EVERY lable and spotting the hidden ones too (ie. deli-meat sometimes has whey in it, the coating on crisps is a milkpowder base), milk comes under various lables and its good to know them before you start.

If it is going to help your child, you should see it within a week. Most often reported is a better ability to concentrate, more energy, more alert.

Gluten takes somewhat longer to be out of the system and to see any noticeable differences unless your child has a specific problem with it. DS5's diarrhea stopped overnight after removal of gluten.

Be aware the withdrawal symptoms (if your child is affected by gluten) are horrendous, but if this happens then its proof enough that your child should not be eating it. We had headbanging, facescratching, nipping and biting himself, and screaming constantly. that lasted nearly 2wks... after exhibiting that behaviour theres no way im giving it back to him any time soon!

so the choice is yours, it may not make any difference at all, and then (hopefully) go back to eating the way he used to, however, you really do have to remove any trace before you might see a difference

good luck XXX

Thanks for your post misscutandstick.

Those withdrawal symptoms sound awful, poor DS and you.

I have been reading a bit more and I think we will cut out dairy first. That way we will know whats affecting him if we see a difference.

Whilst reading I have also learned that some children are affected by soya products and other things !!

Blimey, where do you start ?

yes, shopping here is an absolute nightmare, cooking is worse.

DS5 is intolerant to: dairy, gluten, eggs, soya, bananas, annatto, ive not even tried nuts or shellfish!

DH is intolerant to: onions, mushrooms, peppers, ME: nuts, peas and something that is related to noodles/nachos that makes me come out in hives but havent worked out what yet. Its just taking out one thing at a time and going from there. unfortunately sometimes the substitute for something is just as bad and then it looks like the thing you took out isnt a problem when it is! ie. we originally substitued soya for dairy... DOH!

Blimey, how long must it take you to shop and cook ?!!!

Don't feel so daunted now.

bump

Anyone else ?

I got mine both tested by the university of sunderland. The results came back that they were gluten intolerant but not casein intolerant. So we cut out gluten and have seen massive improvements in concentration, behaviour, sleeping AND communication!

oh, and if they have the diagnosis, you can get gluten free stuff on prescription. we do and it saves a FORTUNE!

oh and with a diagnosis they get a form from and you get a letter from gp and send them off and the school meets their dietary needs. Mine both have school dinners and the school ensures they provide a gluten free meal.

and I'm done now.

The AIA cookbook is fantastic, it covers everything, even packed lunches for school. I've seen brilliant results with my friends little boy, eliminating gluten and dairy, and if a tiny bit gets into the diet you know about it.

I tried it with my DD2 (15mo) but got scared about eliminating such big food groups at such a young age, but will give it another go in a year or so as I'm pretty sure I saw improvements.

Thank you hecate and mumgoingcrazy

How do you get your DC tested by the univ of sunderland ?

He has a DX of AS/HFA.

hmmmm, read all that with interest. whas told by dietician to try him on gluten free, problems with his stools also, gluten free initially solved the problem, we didnt have any of the withdrawals mentioned thankfully, but his TA said his behaviour was better in school within 2 wks of him going gluten free. we get stuff on prescription but school said they couldnt help re: meals, i had to put him on packed lunches, so maybe not all schools will be so amenable

I emailed them and they sent out a questionaire. I filled it in and sent it back and then they sent a bottle, which I had to fill with pee! (the boys, obv! )

I then had to stick it in the freezer!! And when rock solid, send it first class with a cheque for £60

I got the results very quickly, and they were accepted without question by the gp and the school.

If the school won't help, contact the lea to complain, because they have to cater for dietary requirements! (or at least they do round here) Also getting a letter from gp confirming need for gf meal is good, cos it's medial evidence of the requirement, iyswim.

(that's £60 per child needing testing btw)

Thanks hecate !!

Sounds like the way to go and don't mind spending £60 to know if it's worth going ahead with the diet.

Hey guys

if you want to try diet (and other stuff that WILL help your asd child) take a look at www.treatingautism.co.uk

x