Anybody who has a child on a GFCF diet...

[Fel1x]

Hello!

Just heard about this yesterday on another thread I started about DS1 (ASD) being v tired and having frequent tummy ache, plus being quite thin.
A GFCF diet looks as though it may be something that could help him.

Those of you that are doing it...

How did you start? Do you cut out gluten first and the dairy later to see which it is that affects the child? (if it is not both)

How do you record the changes/differences it makes? How long does it take to be able to see if it is helping?

And should I just start it by myself or wait 2 weeks till DS's next paed appt and ask the paed to refer us to a dietician for help with doing it?

Also, any other tips will be gratefully received!

Thanks!

We did it separately. I think the usual way is casein first then gluten (although ds1 was hardly eating any dairy anyway so we did it the other way round).

You can get a urine test at the Sunderland Autism Research unit which can give some indication as to whether it is likely to be helpful.

We saw changes very quickly (within days).

We saw a dietician who was useless (it was before ds1 had been diagnosed and she practically accused me of having MSBP - said she didn't think he had autism etc etc- well he's severely autistic - and 11 now so no doubt at all!) but times have changed so it might be worth asking. The paed who diagnosed ds1 was very sceptical and dismissive - but the paeds we have seen more recently have been interested and encouraging.

We went dairy lite first b/c of severe constipation, then much later gluten free (as it wasn't so well publicised then, my ds is a teen).
My view is that it's really up to you if you want to do it, b/c drs are not always supportive of diet, they prefer to give you meds.
I just had to know if there was any hope of it working so did gluten free literally overnight as there was nothing else on the horizon anywhere.
Over time and a few apointments later we have acquired a very understanding dr who is supportive of everything we have done.
The effects of diet were and are astounding, this really encouraged me enough that any extra food-related effort is worth making.
But this is also up to each and every family, because diet might not work for everyone. But if it does work, then you are in control and they are better.
There is a really good book that explains the food problems with autism angle by a mum of autistic child & a dr, GAPS. It helped me a lot, we do about 90% of what she recommends.

Nightcat - sounds like we started at similar times. I don't know about you but I have seen so many changes in attitudes from the medics. It was slow initially but really picked up pace recently. It's also much easier to do now. When we started the diet I had to go to Chinese supermarkets to pick up the flours needed for the bread (rice, potato starch and tapioca) - now I just buy it ready mixed in sainsbury's.

I also agree that if you see changes they are very obvious.

Friends son has done it - very helpful. (Also cut out apples and grapes.)

Hi - we started our son (nearly 3) on GFCF and Casein free. He isn't diagosed but was leaning towards ASD. We also have looked into 'biomed' approach - whereby specifc diets are followed and supplements added to the diet. Might be something to look at - although are many varied opinions on how effective this is. For us we have seen major improvements on all levels. He still had odd behaviours but the all round improvements have been immense

Saintly, yes, I agree on drs attitudes to some extent, although I think it's still a bit of a hit-and-miss, some are at least open minded.
As for bread, we tried a few, but couldn't stomach them so left it out in the end, I am hopeless at baking.

What I really like though is leaving some large aisles of supermarkets out of my weekly trail, cereals and crisps :)

I think I have been very lucky with the docs we have seen this year - have fallen over backwards a few times.