GFCF Diet. How do we know it's working?

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our ds aged 4 has autism and started on the gfcf diet in January. Although we were open-minded about the 'success stories' we eventually decided that there was nothing to lose and if we didn't try it we would never know. We have been as strict as we can but I think that occasionally small amounts of offending foods sneak through because it is all quite confusing and sometimes I find out that an ingredient that I thought was fine isn't!
At first we were quite excited because his playgroup reported big changes in his behaviour, for example sitting with the other children for snack time or story time which he had never done before and we started to see an improvement in his bowel condition. Although he has made no startling improvements (he is still completely non-verbal) he has made steady ones. His eye contact is much improved as is his concentration and most of his stimming has ceased.
My question is this. How do we know it is the diet that is working and not the many other factors? It could be just a natural progression of him growing up or the excellent early intervention group that he attended. Or it could be that he had 'toddler diarrhoea' after all and he is outgrowing it. (We never really believed the doctors on this as we thought they were trying to avoid acknowledging any possible links with his autism-but maybe we were wrong).
We had thought to just carry on with the diet as we are in a routine at home which isn't too difficult now that we have worked out where to buy things that he will actually eat and have finally perfected the gfcf yorkshire pudding! Tbh I'm a bit scared of stopping it in case ds loses all his new found skills. I wondered if anyone else had taken their children off the diet and what had happened. Did you notice any effect straight away or would it be a gradual response? Does the fact that his test for coeliac disease was negative mean that we have been wasting our time with the diet? Sorry, lots of questions I know but I haven't really been able to ask the doctors as they don't approve of us trying the diet at all (except for our wonderful hv)
I felt so mean today. Ds usually uses a major buggy but we do try to practice his walking when possible and today he ran into the sweet shop. By the time I got in there he had found the 'wotsits' which he adores but has not been allowed to have for the last nine months. He was so pleased and took them so gently and politely off the shelf, I was really proud of him for managing to recognise the packet but I still had to take them away from him. I can still see his little face and feel like a evil witch so it has got me wondering about carrying on with the diet. One last question. Does it always have to be dairy and gluten free or can some children be intolerant to just one or the other?

Hi everyone, sorry I haven't been ignoring all your helpful advice, we have had no internet connection since last thursday and it's been driving me mad!
I will find the yorkshire pudding recipe. We tried loads of different ones with different flours, guar gum etc that we found on the net but they weren't brilliant. In the end dh tried an ordinary recipe out of 'Brian Turner's complete british recipes' and just substituted ingredients.

Yorkshire pudding.
1 large cup plain flour (we use dove's farm)
a pinch of salt
1 large cup eggs
1 large cup milk and water mixed. (we have used soya but haven't tried rice milk)
1 tbsp malt vinegar.
The main difference between this recipe and others we tried is the amount of eggs. Although you have to use quite a lot it does make a lot of puddings and they freeze well. Dh is now the self-styled yorkshire pudding expert in our house and says that it is important to let the mixture stand for about 20 mins and then give it a quick whisk immediately before it goes in the oven. Also the fat or oil has to be smoking.

Thanks Pixel, can't wait to try this! But I read that malt vinegar contains gluten. (made from barley i think?) Do you use this without problems?

Oh no! does it really? I didn't even know what was in the recipe until today when dh dug out the book for me. Well I haven't noticed it making any difference to ds but I'm really sorry if i've been giving out bad advice. (well meaning-honest!)

One reason I'm fed up with the diet is that I'm finding it so difficult and confusing. I keep looking things up on the net but am still not 100% sure that I'm doing it right no matter how strict I try to be. When we first started we said that we would do it properly -all or nothing-or else there was no point and almost 1 year later we still get caught out. Seem to remember something about malt vinegar now but forgot because I never have any other cause to use it and forgot to tell dh (the yorkshire pudding king!)

Perhaps someone else knows if any other kind of vinegar would be ok and make a good substitute?

I'll get dh to try the next batch without vinegar and still if the recipe is still as good.

Hi Pixel

Sorry, didn't mean to come across as a know-it-all - because i'm a know-very-little! Haven't been doing the diet very long, so am still checking and rechecking every ingredient, probably still giving DS loads of things that he's not supposed to have. It was really more of a question about the malt, think I was hoping you were going to tell me it was OK. I'm finding it really difficult too, at the moment I'm not using anything pre-prepared at all, making everything from scratch.

Are you going to carry on with it for now?

ok, dh says you need the acid but can't see why white wine vinegar shouldn't work.

We are carrying on for now Beccaboo but getting a bit disheartened. A while ago we thought we were getting into the swing of it but ds is getting fussier by the day and I'm starting to wonder what he's surviving on. When we started he ate a good range of foods but it seems like every week he refuses something else and I spend all my time cooking things in different ways to tempt him. The other week he ate some roasted carrots and it was ridiculous how pleased I was!

The other problem is that I don't have my own kitchen and have to share the pub one which is serving food until 10 at night. I go through acres of kitchen foil just to be able to use the grill or oven as I don't know what the last person put on it, can't use the fryer in case someone has put scampi in it without telling me etc etc. I try to make meals from scratch which everyone in the family enjoys but ds won't touch them. I'm really running out of ideas now!

Also, when ds has managed to get hold of something he shouldn't have it doesn't seem to affect him. I think we are coming round to accepting that he is one of those children who unfortunately won't benefit from the diet. I hope you have more luck with your ds!

Almost all children with ASD that I know have food selectivity problems, whether they are on the diet or not. There are a few that eat like pigs (no diet of any sort for them!) and I know one boy who is GFCF and eats really well, lots of rice, GF sausages, potatoes etc, but he seems to be rare.

beccaboo- nutrilink do a whole host of tests. One which gives a good idea of the health of the gut is a test that measures the amount of something called sig-A in the saliva. Which reminds me I have to do one of those on ds1. Nutri-link don't seem to be diet obsessives- they haven't expressed concern at ds1 being on casein for example (whereas I find a lot of people would be very anti that- even though I tell them it's never made any difference).

RE time for gluten to leave the body. It is said that it can take up to a yea. However- everyone I know who has had a good result with the diet has seen a big improvement (or big withdrawal decline iykwim) within days. From talking to people I would expect something fairly obvious pretty quickly.

BTW if ds1 ate a carrot i would be dancing naked in the street He ate a raost potato (with jam) this weekend apparently- closest thing to a vegetable to have passed his lips in the last 3 years!

Thanks Jimjams, I'll check out nutrilink. It would be good to have some objective evidence to back things up.

Pixel, your kitchen situation sounds really difficult - if you're not seeing any marked effects I can see why it might not be worth carrying on. From what people have said here I think we've been really lucky so far - DS is one of the big eaters, and he loves his veg (at the moment anyway) - don't now how long we'd have stuck it if he was really fussy.

The most annoying thing is that I went to great lengths to wean him on lovely fresh veggies of all kinds (including salads) pasta, rice etc. No packets or jars for my boy! (smug face) Now we are down to potatoes and parsnips. Oh well, it's starting to look like I should be grateful for that!

oh god I used to spend hours bashing up organic this that and the other and freezing - then watching (smugly) as he ate everything with relish. Now I could count on 10 fingers the numbers of different food itens he will eat. Nothing looks remotely like a vegetable or a fruit (unless you count crisps as veggies- these days I do!)

Well we abandoned the GF diet at the weekend, and no ill-effects at all so far. Feels a bit depressing - all that effort for nothing, but at least I won't look back and wonder if...
Ds1 is SO delighted to be eating normal bread again, not even any crumbs left in his lunchbox, and it's nice to be able to give all the children the same food again. And ds1 is going to the birthdayparty at Pizza Hut on Saturday!
We tried.
I read somewhere that tomato ketchup counts as one of the five portions of fruit and veg (or make that all five in ds1's case!)