GFCF diet for 100% tube fed ASD 2.8yr old

[daddymoo]

Hi all

This is my first post (and probably the start of many!)

Our DS (one of twin boys) has recent dx of ASD. He has always been 100% tube fed via G tube with milk feeds of pediasure plus.

Has anybody ever approached their nutritionist to discuss a tube-fed GFCF diet. Presumably it would be really simple to change milk feed to suit this diet and would like to avoid all the intolerance pre-tests if possible as they seem complicated.

If we were to use this strategy, how long should we wait on average before we should notice a change in behaviour, and what changes should we look out for?

Thanks a lot.

[luckylady74]

it was really easy to sendoff a sample of my ds urine to the sunderland uni autism research unit to be tested for intolerance.
all the people i spoke too who had done the diet said their child improved - ie stopped headbanging- within days, but the official line seems to be you trial the diet for 6 months to a year. other things to look out for seemed to be a reduction in 'stimming' and more awareness.
our ds did test positive, but didn't respond to the diet at all - i think the more severe the autism the more the dramatic result - obviously this is all hearsay and i hope someone comes along with more scientific/statistical info!

[gess]

Is pediasure partially hydrolysed already? If so you may not need to go cf anyway- even if there was a problem.

I;d ring the Autism Research Centre in Sunderland and talk to Paul Shattock in your situation. The urine test would indicate whether casein was likely to be a problem.

[emmalou78]

Hi
If your considering trialing the GFCF diet - read up on it first - be sure in your mind that this is what you want to do, because NOT all nutritionists and Peads are in favour of it...

The Sunderland Uni Urine test is a good idea - but not essential.

Get hold of a copy of the Marylin LeBreton Book of you can - its a VERY handy resource.

My son is on the Diet - the results haven't been spectacular he is still autistic with bells on, but he's more engaged, he's using language albeit in an odd and limited way, he's slightly less agressive - still self injurous still flaps and stims for all he's worth,

But he eats SO much now, his diet was VERY restricted, he no longer has very loose motions that he wipes here there and everywhere [solid poo goes in teh toilet - he just smears off the 'residue' charming child!]

I'm pro the diet - any positive change is worthwhilst.... BUT
It takes:

3 days for caseine to leave the body
and
6months
for gluten to leave

and Withdrawal symptons aren't neccesarily fun!

you get used ot label reading though.