Gluten free diet update - I realise you're not interested but I want to share

[Hecate]

I am not sure whether I am imagining things - but I don't see how I could be, unless I've finally snapped and I'm having all manner of hallucinations!

Been a few weeks - since easter hols - on GF diet. (Both my lads tested positive).

Ds1 has been a nightmare we've seen a real deterioration in his behaviour. Bad meltdowns, crying, up all night - a big step backward. But the last couple of days it's like a cloud has lifted. He's calmed right down and we've actually noticed a difference in his speech . He is putting WHOLE sentences together - normal ones!! And using words that he doesn't generally use. Yesterday, he made instruments out of tinfoil and conducted us all! He's really engaging us! This morning he got out of the car and normally he runs into school screaming "LATE LATE" but today he WALKED and - and and and - he turned to me and said "Bye mum, see you at home at 4oclock". He NEVER turns to talk to me when we drop him at school! EVER! If I try to stop him to get him to talk, he screams at me!

Now to ds2 - who lives his life totally away with the fairies tbvh. For the last few school days, he has gone and fetched his shoes - WITHOUT BEING ASKED A MILLION TIMES (or without me giving up and going to fetch them myself and putting them on him!!) - put them on and got his own bag and waited at the door! Last week he told his brother they were going to be late This is a boy who you can dress in his uniform and take to the gates without him ever realising it's a school day! Today, he said " is early. not late. will be win" and I have heard some quite good sentences - yup sentences, whole ones! - coming from him.

There are just so many little things that would sound like nothing to anyone if I told them, but they're really different.

Anyone else seen some amazing changes in their child after they go GF?? Is it GF? Maybe it's unrelated? But that would be too much of a coincidence surely - both boys making such progress at the same time, just after going GF?

And does it last? [hopeful] Is this just the beginning?

hecate
pretty much my experience with DS2.
I pulled milk/casein too after a month of gf and he made huge improvements with sleep and toiletting as well as the speech/behaviour/social improvements when we pulled gluten.
He has been gfcf for 8 years now and refuses non gfcf because he knows now that it makes him feel bloody awful ( particularly the 'hangover' part) and he has gradually continued to recover skills. He is a very different boy from the child of 8 years ago. It had been miraculous for us. My boy came back.

Very pleased for you .
( i remember questioning whether gluten free had been the thing that had triggered the difference - until I realised that I didn't care really )

I know, I don't think I really care why either I am finding myself chuckling and having that happy little 'jumping' feeling in my stomach - you know when you're really excited?

and
yes.

brilliant, hecate, so glad it seems to be having an effect.

dd1 has been GF (and mostly CF) for about 9 months now, and there have been big improvements for her too. She just seems to be more in this world, really.

MOre general interaction, more cheekiness (not sure she needed more of this tbh ), just more of dd1, I suppose.

Same as you, I just feel that dd1 is definitely different (in a good way) when GF.

Im so pleased for you hecate. My Ds really has improved with it but only behaviourally. Its hard to now at the time until you look back at what he used to be like. He used to throw tantrums constantly and now I cant remember the last time he had one- Now he just has a little moan.

the test I used is the Sunderland test. dd1 is ASD and there are thought to be links between gut issues and autism. If you google sunderland autism research it should come up. It's a simple urine test, which shows liklihood of not coping with gluten/casein.

hth (apologies for brief explanation - wriggly baby on lap )

Great news for you and your lads Hecate.

TClanger - I think you can get a urine test done via the Sunderland Autism Research Unit. Think it costs about £60.

Snap! University of Sunderland. It does indeed cost £60 - although their leaflet said they can perhaps come to an arrangement if needs be. They send you a questionnaire, you fill it in and return it, then they send you a sample tube. You have to fill it with the child's wee and then put it in the freezer! When it's well frozen, you post it to them. I got both results back in about a week. They test gluten and dairy.

This is fantastic! DS2(5)has been cf since babyhood and gf for nearly two years. We saw big changes in sleep patterns but nothing dramatic elsewhere, sadly. It's worth it for the (mostly) unbroken nights though!

Having said all that, he is making slow steady progress with language and is MUCH more interactive than he used to be. I never know whether to put it down to the biomed stuff or the ABA though.