DS2's urine test came back from the ARU

[sphil]

And suggests that "it would be most prudent to attempt a gluten free diet". Have e-mailed his nutritionist at BIBIC for advice, but wonder if anyone on here had any words of wisdom? I've got mixed feelings - dreading the initial stages but excited that we might see some changes.

I'm confused about the results for casein, however, which showed no significance. DS2 is on a casein free diet anyway, so would this automatically mean that he would test 'negative'?

The letter goes on to say that they don't test for dairy allergy, only for dairy toxicity, which I understand are different things (though don't ask me to explain it!) The confusing thing is that we've always assumed he was allergic to dairy because of his eczema but it's never been conclusively proved by any tests.

Have you spoken to them? They only record a dairy problem if the results are + 95% or something.
if they've said gluten advisable then it means your son has IAG in his urine and therefore prob a leaky gut- best to avoid aspartame other sweetners and MSG as well.

Will write more tomorrow- off to bed now- but ring Paul Shattock in the morning. I found BIBIC a bit dozy on this stuff tbh.

DS3's results were like this and he's doing well on goast milk!

Thanks Jimjams - I'll ring tomorrow. Have just been googling gf/cf research - DS2 has most of the traits associated with a positive outcome on the diet, so think we must try it. He's dairy (and MSG/sweetener) free anyway, so we're half way there.

The weird thing is that DS2 is eating more bread at the moment than he has done for ages. We restricted it for a while on BIBIC's advice because they felt he had a yeast overgrowth in his gut, but it's crept back in, especially since one of his words since starting PECS is 'toast'! Eating more bread has coincided with a number of negative things: more disrupted sleep, more hyper behaviour, greater sensitivity to sound and an increase in jerky movements of his arms. However, the positive improvements he's making at the moment far outweigh the negative: he's starting to communicate more consistently, interact with other children and is far more confident, 'sparky' and alert in general. Said 'wash hands' and 'byebye mummy' today - has never really combined words up to now.

Strange eh? I don't suppose there's ever been any research showing that the opioids can have positive as well as negative effects?

Strange you should post this Sphil as whether the opioid peptides can have a positive effect is something I've been wondering. Both my boys are intolerant of dairy in the conventional sense and DS1 has been on a low dairy diet as a result. We did the urine test over Easter but I emailed them beforehand about the dairy issue. They said if we wanted to test for dairy toxicity from a ASD-leaky bowel perspective then to refeed him dairy for 10 days prior to the test. During that 10 days of increased dairy DS become more and more hyper but mostly in a charming way and that extra spark seemed to compensate for some of his more autistic behaviours. By the end of it be was very hyper though andhis poos had become foul again. We did the test, stopped dairy and had a dreadful 10 days as he 'withdrew' - mood swings, irritable, low concentration. He becamse quite obsessive eating gluten and wanted lots of bread, pittas, cheerios.

The result came back with raised peaks for dairy and IAG. The IAG peak wasn't the highest but they thought the highest was a contaminant from ibuprofen syrup he'd had. They advised stoppinbg gluten but have yet to take the plunge as I think it will make his diet extrememly restricitve and he hates the gluten free breads and biscuits we've tried so far.

However in the weeks since going completely dairy free his hyperactivity has diminished so much. He is still impulsive and fidgety but is able to concentrate a lot better and is a lot less aggressive. However this has just continued and continued to the point where he has become more withdrawn and less communicative and more autistic. Never thought I'd say it but I miss it as it has taken his spark. It was almost like his hyperactivity was giving him an edge that helped compensate for some aspects of his autism. His sleep has also worsened too and my H is wondering whether the opioids from the casein were sedating him and helping him settle.

Lx

How interesting Liz! I'm going to ring the ARU tomorrow and ask the question about possible positive effects of the opioid peptides, as well as the dairy question.Will let you know what they say.

How interesting Liz! I'm going to ring the ARU tomorrow and ask the question about possible positive effects of the opioid peptides, as well as the dairy question.Will let you know what they say.

Please do post what they say, will be very interested!

Lx

Ok - spoke to the ARU today. They checked his dairy results and said they were less than 50% significant - but that's because he has no dairy! However, she agreed with me that it probably isn't worth testing for dairy 'toxicity' from a leaky gut point of view as we are pretty sure that it aggravates his eczema.
Mind you, he still gets eczema (esp round his mouth) on a casein free diet, so am hoping that going gluten free may have a positive effect on this - there's something in the ARU booklet about the gf/cf diet sometimes helping with 'classic' food allergies, though I can't remember exact details.

The woman I spoke to was a bit more mystified by the question whether opioid peptides ever have a positive effect. She said that if the increase in DS2's bread consumption is fairly recent (it is) then the peptides were probably still building up and if we continued with a more 'gluten-heavy' diet, we might see a gradual increase in negative effects.

Saw the paed today who said that the only time she counsels against gf/cf is if it will further restrict a very limited diet. DS2 is fussy about food but not obsessively so, and eats a fairly good diet (because I trick him into it)so don't see that this will be a problem. Gave him a gf biscuit today and he rejected it the first time, but ate it when I offered it to him again later.

So I think we're going to go ahead.

Slightly off the point - can someone remind me what the problem is with ASD and bananas? May be a complete coincidence but DS2 has slept through every night since I stopped giving him bananas 5 days ago. Gave him one today (the ONLY thing in Sainsburys cafe that he could eat)and he was bouncing around like a lunatic at bed time - his pillow was soaked with sweat.

Thanks for that info Sphil. Was wondering about calling them too and maybe mystifying them further!

Lx

sphil - check out the AIA website:
www.autismmedical.com/wheredoibegin/?selected_menu=5
(one day I'll learn how to do links...)
Some fruits and vegetables contain natural glutamates and AIA advise to avoid bananas, citrus fruits and bananas. I'm sure I've read somewhere about broccoli as well. AIA is a bit evangelical about the extent of elimination for me, but I guess it depends where you want to draw the line in taking gluten and related items from the diet.

No advice on GF/CF stuff but for natural glutamate listings this \link{http://www.fedupwithfoodadditives.info\site} is very helpful.

Thanks both of you - will check these out.