GFCF - calling Saintmaybe, Gess, anyone with experience please!

[honeybrown]

Following your help after my initial crisis about ASD, I wondered if you could give me your views on GFCF diets. I know Saintmaybe mentioned it as worth trying but my GP also suggested it today too. She has put me in touch with the Autism Unit at Sunderland and I think I'm probably going to give the gfcf thing a bash.
I'm not hoping for a miracle here but any improvement would be wonderful and I wondered what your views were. Thanksx

Thanks Electra - good sensible advice there! GFCF sounds a nightmare but of course I would do anything if the indications from the urine analysis was that it would help.

We've been doing GF/CF (also no soy) for nearly a year with very encouraging results. It is really tough at first but does get much easier once you get on top of all the logistics.

For us, the Sunderland test suggested sensitivity to gluten but not casein. We had already started the diet when we got these results, and attempted to reintroduce casein. We felt that DS was exhibiting some regressive behaviour and went back to casein-free as well (his behavious subsequently improved).

Overall, DS has improved greatly over the past year in terms of his ability to focus, make eye contact, and use language to communicate. I am absolutely convinced that the diet has been instrumental. But I realise it does not work for every child, so it is a very personal decision whether to give it a try.

Good luck!

I've written about it here

I would agree with electra that the Sunderland test does seem good at picking out those it will and won't help (bit anecdotal, but from talking to friends who've had variour results then tried it anyway). IME if a particular food is going to make a change it will be big and obvious and quick.

oh one other tip (from Paul Shattock). With ds3 (not autistic but has IAG in his urine) we switched to goats milk- I didn't want to switch to soya for various reasons- and he's been fine since going on it. I think ds1 has improved on it as well (they still have limited cows milk but 90% goats). Goats does have casein in, but a different form of a protein, and is easier to digest so can work for some.

Thanks Gess, Baglady and Electra! Bump for anyone else with comments.

Ds2 has been cf since he was tiny (because of eczema) and gf for a year (he's 4.7). We've seen gradual changes which may or may not be down to the diet (he's also doing an intensive home programme and other biomedical stuff, so it's hard to tell). The one big change we've seen is in sleep - he still wakes up in the night but burbles quietly to himself rather than shrieking and laughing excitedly. This started a few weeks after he went gf.

What intensive home programme is your ds doing sphil?

The Sunderland test for DS1 (ASD) suggested that gluten was a problem but casein wasn't. We started gf but not cf, and the change was incredible - within a couple of weeks. Now if he ingests gluten he gets diarrhoea, and is very spaced out and we see lots of new stims.

For us additives are more a problem than dairy, and DS1 reacts to anything with E numbers, flavourings or colourings.

Having said that, as I learn more about autism and understand how development rarely follows a linear path, I notice that sometimes he just IS spaced out and stimming for a week or so, and it's got nothing to do with food. We've just had a period of regression again when he lost speech for a week, lots of high-pressure stimming like teeth grinding and hand flapping, but now he seems to be more or less back to normal. You learn to ride the storm out.

It's run by Growing Minds (USA based) - Gess has a very good review of them on her website. I am rubbish at links and I don't even know how to get one of her posts up without losing what I've written here but some of her recent posts have given the link.

Note to self - am intelligent woman, can use computer, must really learn how to do links.......

sorry honeybrown, been off-line. Would agree with what's been said already, though.

We didn't do the sunderland test, only because at the time there was a long wait and we were in one of those 'have to do something NOW' phases; also by that time ds2 was pretty much only eating food containing gluten or casein, which I think can be an indication.

We did casein first, and saw a big effect on his listening and 'speech', such as it was, within days, did gluten a few weeks later and within a week or so saw another shift; he kind of 'arrived'.

We have thought about doing the test since, but it would mean giving him those foods again to do the test, and tbh we're sure enough that it's made a diff to keep on it.

But I do know other children who've had no noticeable benefits from it, and it is a bit inconvenient and expensive, so would really agree that it's sensible to test first.

Interestingly ds2 now asks if something will 'make his head feel funny' if it's unfamiliar, doesn't want to try it if we say yes. He does remember how he used to be and talks about it, and knows that he doesn't have gluten, dairy or 'flavours'. It is hard to be sure what's having an effect, but he does seem to feel the connection himself.

Ours was a bit of an anecdote-driven, hit and miss approach; wish we'd had the benefit then of all these wise and experienced mumsnetters.

Hi Saintmaybe. I'm having a much calmer week this week. It helps to know that we are on track to further assessment and hopefully some services but more importantly I have just been able to refocus on my ds as being ds again not ds with likelihood of autism if that makes sense!
We've now completed the Sunderland questionnaire and are waiting to send the sample - we'll then give gfcf a try if thios is what is suggested. I have to be honest - it looks a nightmare especially as ds lives on bread, cereal and pasta!
Thanks for your advice x

Hi
if your son is eating almost entirely those foods there is a really good chance thatthe diet will help. Thekids that crave these foods are more likly to have a problem with them. But it does almost certainly make the 'detox' a bastard,
When my son came off gluten and dairy he only ate chicken nuggets, pasta bread cheerios and cakes and ice cream. Nightmare!
If you get the Sunderland result you could take it too your GP and see if you can get a prescripy son gets some Dietary Specialities food which helps ( although not all the time as they have some chemicals/additives in that are not great for too often)
Also idf you contact some of the companies like glutano they will send you free samples which are worth having as for the first few days he is likely to throw everything you offer him right back at you.
There is an online company called dietary needs direct which does delivery and her prduct list has dietary info including gf and cf ( the owners sibling is on the diet). Also Wholesome House also deliver and their products are mostly Sunderland diet gfcf friendly too.
Personally if i were starting now I would also look at enzymes to support diet and hopefully expand food options and reduce liklihood of further intolerances - if that makes any sense to you.
Blimey - posting when tired - even more incoherent than usual

Yes, makes perfect sense. You have to keep coming back to that; once you get in the system you might find yourself repeating a lot of things, especially at first, about what your child can't do; of course that's how it works. You absolutely do need to be with him 'as him', you're right.

If the tests come back and you decide to do the diet; it's really not as hard as you think. We put off doing it for ages because like your ds, our son didn't seem to eat anything that he wouldn't have to give up, and he did live off rice cakes and ketchup for a few weeks in protest, but his diet's actually (slightly!) more varied than it was before, and as it did make a difference we'd never go back. There's loads more gf/cf stuff around now, gess has lots of info on her website, I'm sure you've seen.

Take care, glad this week's going better for you, x

Pagwatch - that's so helpful. Thanks. I'll look at your links. I must sit down and do some planning really. We're currently trying to dejunk the freezer and cupboards in readiness so poor dh is coming home to some bizarre food combinations!