GFCF diet, reverting back to include casein

[runikka]

Good evening

I just wondered if anyone following the GFCF diet has found any improvement by just following one element. From time to time we have tried to introduce gluten back into Daniel's diet (aged 4.5 asd) but he seems to wake at night with a lot of tummy ache. We cut out gluten and casein at roughly the same time on the advice of our nutritionist. As we saw no behavioural improvement she suggested trying small amounts of gluten but was against trying casein. Having established gluten and possibly yeast do have an impact, we would like to try casein as we have no real evidence that restricting it is improving things for Daniel. So, is it a case that both should really be restricted or has anyone else following the diets only eliminated gluten or casein.

Many thanks

No, but I'd be very interested as I'm wondering the same thing. DS2 has been dairy free since he was 4 months old because of eczema and we then removed gluten at 3.9 after he'd been diagnosed with ASD at 3. His sleep improved hugely, but no other changes. His eczema has almost cleared up now, so I'm wondering whether we could reintroduce the things that we took out because of allergy rather than autism : dairy, egg, apples, tomatoes. When he has had gluten infringements we've seen definite deteriorations in sleep - but we have no actual proof that dairy, eggs etc have any impact on his autism. And it would be soooo much easier if he could eat them!

we are currently trialling goat's milk with dd1.

she has been gf/cf for baout 2.5 years now (cf first, then gf a month later, i think it was)

anyay, i recently started thinkig that dd1 was not coping with sugars well - she was eating huge amounts of raisins/fruit snacks/dried fruit bars/dried fruit and nut bars (see a pattern here?) and I slowly reduced those down.

my last target onthe sugars front was rice milk, as it is so sweet, and as we had recently started trialling dd2 with gluten/casein (has been cf/gf since being weaned) we thought we'd give it a go for dd1 too (chose goat's milk because 1) suppoesed to be easier to digest/better tolerated and 2) dh has a cow's milk intolerance too (as dd2 definitely did when tiny too))

so far, it seems to be going ok. dd1 has got darker rings under her eyes again, but we are having sleep issues atm too (see my other thread!) so it could be that.

haven't seen any worsening of behaviour, in fact, as her sugar intake has dropped, her behaviour has improved a lot.

her poos are better than they were too (sorry tmi) - not great, but a lot better than the rancid almost-liquid she was producing before (sorry, way TMI!)

Oh this is interesting - dentist has just suggested that rice milk may be contributing to DS2's tooth decay. I wonder if I dare try goat's?

The whole dietary issue is so hit and miss isn't it?

well, it has been nearly a week now (I think - time scales are a little blurred here due to lack of sleep), and I can't really see any adverse affects.

she doesn't like drinking it (but will have a few sips), but accepts it ok on her cereal. teeth issues were one of my main reasons to try the change over, especially since she will only drink fruit juice too (now watered down, at least)

dd1 does have circles under her eyes, but I'm not sure this is down to the milk (they were there before the switch too, and are related ot general digestion as after she has had apoo they are lighter, so need more investigation) she has recently started eating apples and bananas again, and think this might be the cause

her behavior is definitely not any worse - she has, in fact taken a few steps forward, eg last week I was strapping the dds into the car, and after doing dd2's straps, forgot to give her her smelly rag favoured teddy. as I walked around to do up dd1's straps, I said (not too hopefully, but justin the spirit of normality) "dd1, could you give dd2 her teddy? we don't want her to start shouting for it", and by the time I'd got to dd1's door, she was handing teddy over to dd2 with a concerned "say thankyou dd1". I was

she has also learned to ride a scooter (albeit slowly - need to get her one without 2 back wheels, as she gets her feet caught up a lot)

but yes, dietary issues are a nightmare. we have also stoppped dd1 havign lunch at school recently, as they were not taking food issues seriously, imo.

DS2 had his first strawberry in two years yesterday. I was delighted that he ate it, given that they are a completely different shape, colour, flavour and texture to everything else he eats. Am now watching like a hawk to see if any eczema appears - or behaviour changes. The only other fruits he eats are bananas and grapes, so it would be good to get another one in. But then fruits are a minefield in ASD diets too aren't they? AAArrrrrggghhhhhhh.....

oh i know, the eternal dilemma between encouraging/coaxing/cajoling dd1 to eat somehtign new, or not bothering because she will probably react to it.

or even worse, like it, and react to it, and then i have to go through withdrawing it, and ensuing tantrums - sometimes I can see why she doesn't bother to try new things - half the time if she likes it I don't allow her to eat it again (form her point of view totally unneccessarily).

it's a tough one.

We are just doing gluten free. We tried just casein free last year and did not notice any definite difference. We then did the urine testing from Sunderland this year and it only showed an intolerance to gluten so have started a gluten free diet.
Too early to know if it has an effect though.
Have you done the urine test thing?
Ellie

Many thanks for all your replies

It was concerns over rice products containing traces of arsenic, in a newspaper article, that made us concerned about the amount of rice milk Daniel was drinking. He was on goats milk before that but we havent seen any behavioural changes from removing dairy. We also tried Soya but that really did cause a behavioural change plus signs of eczema. The only thing we are uncertain of is eczema and dairy as Daniel suffered quite badly as a baby.

We did the Sunderland test but it was inconclusive as we had already changed to goats milk plus reduced dairy overall.

I think we are going to try casein again in very very small amounts and see how we go.