Gluten Free Diet?

[Krit]

Just wondering if anyone could tell me how you find out if your child should be on a gluten-free diet, the doctor who diagnosed our daughter with Asperger's said there was no reliable test that would give us an answer.

Yes there is a a lot of ABA misinformation around- enough to put me off ABA for a good 18 months- even when we started it I dind't really expect it to be as much fun as it is. Now I'm just sorry that I listened rather than got on with it 2 years ago. I also think the AS adults who do this are rather missing the point- they are able enough to have opinions on ABA - and that most parents doing ABA are not looking for a "cure"- and would be overjoyed if their child ended up as able as the AS adults who are so set against it.

As if!!!!!

The ABA stuff i find 'fits' so much of how i 'instinctivley' parented tom from as far back as i remember!!! I reckon either i 'knew' then....or more likely as i'm sure i'm AS...it came naturally to me too!!!
XXXX

MrsF, you're a star - thank you so much for the ground rice suggestion!! The gluten content is irrelevant to us as, luckily, none of us has issues with it, it's just almonds. I shall go and rescue that recipe from the bin, now!

Hello - just caught this thread now. I am going to be posting off ds1's urine sample to Sunderland tomorrow (it's in the freezer with the fish fingers at the moment ). Have agonised long and hard about whether to do it or not, but think we'll give the diet a try if he has a clear result.
But we are a bit mad uncle-ish. Ds1's cousin has just been diagnosed with 'pragmatic disorder' which I thought wasn't a fashionable diagnosis these days, but it would seem there's something in the boys' fathers' genes.
The test costs £60 (but I think they make allowances for financial hardship if necessary), and they say we should have the result in a week or two. I'll let you know how we get on..

We have an answer! Results came back less than a week after sending off the sample, and I think the recommendation is that it's worth trying a GF diet (he had an IAG peak at 20 mins), but probably no need to do the casein free bit.
Now to try and decide if/when to try it. Need to discuss it all some more with dh (who has suddenly developed major reservations, and keeps asking me difficult questions which I can't answer..), our psychologist, and our GP.
I was sort of hoping that the test would show nothing funny in his urine and we could have felt better about NOT doing the diet, but that possibility is out of the window now.
Jimjams - I know at some point you recommended a couple of good books about the diet - would you mind pointing me in the right direction again please? Also, did you say somewhere that you make GF bread in a breadmaker? (Also hope you have got somewhere with your awful-sounding no nursery situation - how ridiculous to leave you with nothing over the long holidays.)

anyone got any thoughts - surely Mumsnet won't let me down??

I think I's said what I think. My best advice would be to read through this thread again very carefully. I don't know if Jimjams would have any more to say on the subject, she seems to have disappeared and I'm a bit worried about her

oh, and I's said it very good don't you think? Durr should always preview!

Yes Dino, I emailed her yesterday. I know she has a hellish holiday with the in-laws coming up but I'm sure its not until the summer. I hope everything's OK, let's hope she'll tell us what a pair of silly sods we are VERY SOON JJ!!!!!

I was worrying about jimjams but I am nearly sure she has gone on a PECS course this week

jmb1964 We had a positive result for gluten for our son from Sunderland. We knew he did not have a problem with casein and suspected gluten as he would go ballistic in the supermarket to get at the French sticks.

I joined AIA and have to say I also found some members to be fanatical. Many of the products I used as gluten free were not considered acceptable by their diet. We did a gluten free diet for around 16 months. My ds3 had severe diarrhoea and failure to thrive. Ds3 was only 3 when we started and took to the foods very well. Most people felt they saw a change fairly quickly. Like RexandBen's son my ds3 seemed more with it and seemed more keen to communicate. However, after a year he seemed to have plateaued. My ds3 has autism and is very passive so in our case it was not really about behavioural intervention. We gradually re-introduced gluten into his diet and saw no downward turn. He also seemed to have lost his cravings for gluten products. The diarrhoea improved on the diet and has not got worse since eating gluten again.

Not sure if any of that will help you decide. Where I live health professionals recognise it as a valid intervention but tend to say it works best for those at the more severe end of the spectrum or those with severe behaviours.

Ahh you're all so sweet to have noticed. Nothing sinister just blueyonder blew up. Back online now.

Errr marilyn le breton's books are good. Like maddiemo I found some AiA members can be abit over fanatical. We use a breadmaker- I'll dig out barbara the bread's webpage later- OI think she's recommending the el cheapo from Argos at the moment (20 quid odd) but you do need a lot of time if you ring barbara (her recommendations may be available via the aia forums not sure).

Hope you don't mind me dropping in on this conversation. My dd is on gluten free/cow dairy free diet. Nothing to do with intolerance or Autism or AS but she has severe epilepsy and there is supposed to be a link with them triggering seizures. Anyway, I have a cookbook called Allergy-Free Cooking for Kids. Not all the recipes are GF/CF but there is a good symbol system to tell you which ones are. There's also a good section at front with ingredients to look out for on packaging that may contain G/C. Also supermarkets are getting better at stocking special diet foods esp Tesco and Waitrose. It hasn't actually been as hard work for us as I thought.

I read about that recently. A little boy who was having very frequent seizures (lennox gestalt sydrome- speeling??? or is it lennox kelfer or something) has been seizure free since starting the diet 2 and a half years ago.

I think Lennox Gestallt is right! Or is that some kind of therapy?! I think I know which kind of epilepsy you mean anyway.

To be honest we don't know if its a factor for our dd as we went straight from breastmilk to the WF/DF diet. Her epilepsy is also controlled by drugs. But I was in touch with the mother of a girl with the same syndrome as my dd (Aicardi) in the US and it had been massively successful for them. She went from about 12 seizures a day to 2. Our neuro doesn't think it will be making any difference but we're not taking the chance at the moment. She's very good but I still don't believe doctors know everything .

Sorry, don't mean to take this thread away from AS and GF diets.....just find it interesting that diet seems to effect so many things, maybe especially in children who are particularly vulnerable in some way.

My friend whose dd has severe epilepsy poorly controlled by drugs is meant to be going up to GOSH soon to do the ketogenic diet.

Thanks - the ketogenic diet is something I want to look into more. As it is based largely on dairy it kind of contradicts what we are doing at the moment so I want to really understand it first. I think it is only succesful for some types of epilepsy and there hasn't been any evidence it works for hers that I can find (either clinical or anecdotal). But I know for some kids it is fantastic. Same with everything I guess.

Thanks dinosaur, that would be great.

Thanks everyone Glad you're in the land of the net again Jimjams!
We have the breadmaker, and I make all our bread at the moment, but someone told me that home-made GF bread is horrible and too crumbly to make sandwiches with..
Will check out Marilyn LeB and the allergy free cooking for kids book on Amazon.
Our psychologist was talking about a child he knows with Sturg Weber syndrome who improved very dramatically on GF diet, despite much medical and educational scepticism.
Does anyone have a GP willing to prescribe GF stuff for Aspergers on GF diet? Have yet to broach the subject with ours, but maybe not much of the prescribable stuff would be any good anyway?
Three weeks of school left, then the six week window in which to try the diet if we decide to do it - need to be making a decision soonish I suppose.