GFCF - who is doing it? A few questions

[kitegirl]

We are just starting. Can i ask

• are you doing both GF and CF or either gluten/casein? I have read that you have to do both because of the peptide dysfunction comes from both g/c.
• Did you have your DC tested or did you just start it, with the view that if it works you'll notice?
• are you giving any supplements?
• what other biomed interventions are you looking at?
• can you eat in restaurants as a family ever again?

[BagLady75]

Hi kitegirl,

• We are doing GF / CF (also no soy) with DS age 5 ASD. My understanding is that it is best to eliminate both gluten and casein. We had DS tested (Sunderland University) and results showed probably gluten was more at issue than casein. However we tried reintroducting casein and had some regressive behavior so we have decided to stick with GF / CF for the time being.
• We did have a full range of tests done, for completeness sake, prescribed by a DAN! doctor.
• Our doctor prescribed a daily vitamin/mineral supplement.
• We are not doing anything else yet but intend to start probiotics and possibly enzymes.
• We eat in restaurants all the time. Obviously pizza and burgers are out, but we go to French restaurants, gastropubs, Yo! sushi (stick to vegetarian maki), Indian restaurants (get a biriani), etc. I would say that frequently we find no desserts are possible so DS is used to having dessert at home, but otherwise it has really not been a problem. We have even travelled abroad and managed to stick with the diet.

The diet seems overwhelmingly hard when you are getting started but is really not as bad as you think ... and is so worth it!

Good luck and get in touch if you need more info!

[Jimjams2]

It's individual really. ds1 and ds3 are gluten free and mainly on goats milk (contains a different form of casein and is more easily digested- a lot of ASD kids have problems with digestion so can work for some).

DS1 has a major problem with peanuts (turns into loon) so we avoid those.

Both were tested at Sunderland - ds1 autistic, ds3 not (although perhaps not because we've avoided gluten, don't know - hard to tell)

Used various other supplements but nothing much at the moment as can't get them into ds1. Cod live oil can be worth doing, saccromyces, some of the autism specific vitmamins etc

Google treating autism lots of info on there without being quite a rigid as AiA. Some people for example give enzymes rather than do gfcf- depends how sensitive your child is.

Eating out with ds3 isn't a problem- there's enough foood available that he can eat. We wouldn't take ds1 to any sort of restaurant anyway!

[Jimjams2]

oh sorry that's a bit unclear- both ds1 and ds3 had a positive sunderland result, only ds1 is autistic.

[kitegirl]

tx
Baglady, who did you see? Jean Muscroft?

[saintmaybe]

Hi,
We do gf/cf for ds2, he's 8 and autistic. We didn't do sunderland test because there was a long waiting list and we wanted to get on with it. Ds2 at that time (age 4) was self-limiting his food to pretty much only gluten/dairy foods, which is apparently often an indicator.

We did casein first, and saw an immediate (within 3 days) improvement in listening and verbal skills.

After 6weeks? I think, something like that, we took out gluten. Took longer to see an effect, a few weeks, and a less dramatic effect, but I think more profound, he felt more 'present'. Obv, it's hard to say, because by then he wasn't having either, but we were advised to take out both, as you say. AiA also advised removing sweeteners, esp. aspartame, and monosodium glutamate, which we did. They also suggested a lot of things that we haven't done.

When we startd we went gf/cf as a family, but after a year the rest of us started having some gluten and dairy again, but we have to be quite careful with different areas of the kitchen, not putting toasty knives into the honey etc, as tiny bits seem to have an effect on him.

I'm glad we started pretty strictly then relaxed, as I do't think we'd have seen the effects as clearly, and we now know what we can get away with. Eg., he can eat chips when we're out, although most places have the kind that have a tiny coating of some kind of flour to stop them sticking, without too much effect. But he can't have most ketchups, either because of additives or because most of them sweeten with wheat syrup rather than sugar, without going loopy, so we have a bottle of heinz wherever we go.

The only supplements we can get into him; he's very opposed to them! are cod liver oil on home-made fishfingers (which I wouldn't advise you start making, they're a pain, and these days you can buy them, he just won't eat them), and biona do a powdered multi vit and mineral which we mix into ketchup. There's nothing else we can get him to take.

It does seem daunting; I put off trying it for months, but it's really not that bad, esp if your dc eats a wide diet (mine doesn't!).
And absolutely worth it in our case.

Good luck!

[Jimjams2]

RE the Sunderland test- they quote about 6-8 weeks for the reuslts but usually its much quicker- within a week or 2.

[kitegirl]

Thank you for your replies again! I'm going to get the Sunderland test done to see if we have to cut out casein. I pretty much guessed that DS is sensitive to gluten (ticked so many boxes in the list of physical symptoms) so we went GF 10 days ago and already seeing a difference, diarrhoea went and he is generally more 'with it'. It seems to be pretty easy to find GF alternatives as well and as the whole family is now doing it, it really isn't a problem (and we are all eating healthier as a result!). But dairy is going to be a difficult one...

Another question, jimjams this has been concerning me. DS2 is now 6 months. Given there's so much gluten intolerance in the family (DS1, my husband recons he is coeliac, my niece has a serious gluten allergy and my sister is also sensitive), I should probably not give any gluten to DS2 to protect him? I do worry about him after what happened to DS1.