Gluten/Casein Free Diet for ASD

[dietstartstmoz]

Just wondering if anyone had tried this and if so how did you get on?
DS2 aged 3.6 has ASD, not had official dx yet although next paed appt soon. Had SALT report yesterday and spoke to them and they clearly indicate ASD, previous paed appt agreed with this but wanted to see us again.
I have previously posted about Ds's runny poo, he has had blood tests for milk, wheat allergies and they came back normal. He has not had any further tests or stool samples etc. I have been trying to research the poo problem on the internet and also came across some info on how a gluten/casein free diet may help ASD children with attention, development etc as well possibly solving the poo issue.
Has anyone tried this and how did you get on?

dd1 is gf/cf.

we had her tested via Sunderland Autism research Unit (see here)

it's a simple urine test, and a form to fill in.

the results indicate whether trying a gf/cf (either, or both) diet woudl be a help.

dd1 has been gf/cf for 4 years now, and it is the best thign we ever did for her.

There was a lot of info on a post earlier this week ' talk to me about this Sunderland test' about gf cf on 14 th feb. Suggest you have a look at it.

Brilliant, thanks i'll follow that up. I haven't heard of the sunderland test.

I've just ordered this test too, compare result when they come?..

My dd is ASD, 13, eats like a horse, and has no problems with her poos!! (she does have bad wind though)

The real issue is she's really anxious. We've tried meds they didnt work, she's having reflexology ,which works to relax her when she has it.

So next will give this a go! I do know loads of families who swear by it, but mostly for children who have been non verbal/ no eye contact (not us), or with poo problems!

Is this test still running at the moment? Alys how did you order your test? I have looked on website and there is an article about a completed test, but I have e-mailed them asking about the est as I can't see it on the website.

They will get back to you pretty quickly by email and more information - don't panic.

I just rang them and ordered it from a very nice lady...
0191 549 9300
£60 though.
Good luck..

Alys - my dd1 eats like a horse, and (recently) has good poo.

being gf really, really helps with her anxiety. I can tell when she has been accidentally glutened, because she becomes clingy (as in needs to be in constant physical contact with me), and her anxiety goes through the roof, even for tiny simple things she has done a million times before.

dd1 is severe ASD, and becomes so anxious she is practically non-verbal again - she is usually very articulate, and can at least indicate what she wants/is bothering her/what she needs doing.

Fab to hear your sucess story Silver.

Yes like I say I have been a bit blind to GF/CF intolerances thro the years, always thinking its not for us.

But now the anxiety is taking over all life , I'm keen to give it a go.

Can imagine the swiping issues getting serious though, might have to give public eating areas a miss for a while..

I have had a reply so will be getting my pack soon. How long do you have to be 'free' for the test? I know my pack will tell me just need to psych myself up for that.

what do you mean by "free" for the test?

you don't have to be (and shouldn't be) gf/cf for the test - it is testing how gluten and casein are dealt with by the body, so gluten/casein need ot be present.

the form is quite lengthy - lots of questions about poo . and then a urine sample, which for us was the hardest part, but dd1 was not toilet trained, and barely drinking anything, as well as non-verbal. so that ws a challenge

Oh sorry, I had read it wrong. i thought it said you have to be 'free' of sweeteners, colouring etc, I was having a panic thinking what will DS eat? If the results come back with something then we will certainly cut things out and change food stuffs. Just a question, Ds has had blood tests for allergies to wheat, milk etc and came back negative. It's still worth the sunderland test isn't it, as it is testing for something completely different. DH asked the question so I thought i'd check. Sorry, it's a lot to take in all at once, with ASD concenrs as well.

yes that's right - carry on normal diet for now, and the result will tell you whether trying out gf/cf is worth a shot.

if the results indicate it is worht it, then to do the full diet, you should cut out gluten (wheat, oats, barley and rye plus all derivatives), casein, and then all sweeteners/colourings/etc.

and yes, the sunderland test is testing for something a bit different. it tests for a by-product which appears if gluten and casein are not being digested properly - peptides. these peptides are what may cause some of the issues ASD children can have - pain responses, temperature regulation, etc.

It is a lot ot take in. take a deep breath, sit down and have a cuppa and some chocolate. and ask any questions you may have - we all had questions once (and still do!)

Just got my sons results back and it say there are casein peptides present and that he may benfit from being casein free. He's already wheat nut and egg free due to allergies, so going casein free too will be quite a biggy.(He was dairy free as was also having allergic reactions to milk but is no longer allergic). Anyone else in this situation.

My DS had casein peptides (9 different sorts!)detected.

He rejected soya yoghurts entirely. Dairy free icecream is OK though. I make the yoghurts into lollies and he will eat them then.

Dairy crops up in strange places. Crisps sometimes, for instance.

One of my big hobbies is reading ingredients labels in supermarkets.

I'm going to have a lot to learn if we get a positive result!

ds1 has also been gfcf for 6 months and we haven't looked back. Ever since on solids he had constipation and then the lactulose/senna we were prescribed just turned it into 'soft stool constipation' - hard to describe but it would seem to be really hard for him to 'go' but then came out looking like mousse (sorry, i realise TMI especially at tea time...). We didn't do the sunderland test just started the diet and within 3-4 days he started doing fully formed 'normal' poos and has hardly ever had the random screaming that seemed like tummy ache that we never got to the bottom of, nor the mysterious red cheeks/ears.

Its very daunting to change their diet, especially when they have so many other challenges and are picky eaters in the first place. I wish i'd done the sunderland test as now i feel it would be a step back to put him back on gluten and cow diary to 'prove' that it helped, when I just know that it helped based on his poos and his behaviour.

I looked at the list of symptoms, DS doesn't have many, just diarrhoea every day 3/4 times, and ASD. Hoping it will solve the poo problem but it helps to allieviate anxiety and stimming or we see any improvement in other areas, speech etc that would be amazing.

This isn't something we can get tested through the GP?

no, the test needs to be done by Sunderland ARU.

but some people have had success with presenting their gp with the test results, and then gaining gf products on prescription, the same way people with cystic fibrosis get gf products on prescription.

ime, this is rare, though - but always worth a shot!