Lab results back - GFCF diet recommended

[Spinkle]

We did the urine test. DS (6) is showing IAG in his wee. No gluten peptides but casein ones.

He lives on sandwiches and yoghurts. I'm not sure how this is going to go.

Am not going to tell his school. I think it will be test of it's effectiveness if they mention anything.

Has anyone tried it and had success? anyone tried it and had no difference?

dd1 is gf/cf.

she had the opposite result - very high gluten peptides, inconclusive for casein.

we cut both out of her diet (did casein first, and did see a difference) as she was a total gluten/casein junkie.

she lived on weetabix, yoghurt, pasta with cheese, cous cous - you name it, if it had gluten or casein in, she loved it.

it has been life changing for her. she was verbal beforehand, but minimally so. very echolalic, and no real interaction, beyond singing together or reciting stories together.

a couple of weeks in, and she was tlking to US, rather than just talking, iyswim? she had a normal pain reactionn (before she didn't notice), and was a LOT less dreamy and other-worldly.

what it did for her, most of all, was ot give her the headspace needed for her to be able to learn. she really was fogged up before.

wrt telling school: a tricky one. depending on how much your ds reacts, there are a whole lot of potential issues with school. eg PVA glue is flour based, play dough/plasticne is a no-go, a lot of paints have flour products in. even the glue used on stickers (dd1 used to continually stick them on her hands and peel them off, to get the reaction). skin transfer used ot be the biggest problem (I mention this because you might well cut down on gluten/casein, but not necessarily see a difference - and it could be that your ds is getting his "fix" at school...)

dd1 has been gf/cf for nearly 4 years now - it is tricky to eliminate it all at first, but once you get used ot reading labels, and not venturing into 90% of the supermarket, it becomes a way of life.

How do you get the test done?

Indigo, google Sunderland Autism Research Unit (they are called somethig else now, but that should get the result)

You email them, and request the test pack.

when dd1 was tested, it was £60, but htis was 4 years a go.

you provide a urine sample (they sned all the bits), and fill in a huge long form about toilet habits (lots of talking baout poo, iirc). then freeze the sample, send it off in the jiffy bag, and they do the rest.

they can let oyu know wait times, as sometimes they are busy.

they are very helpful on the phone if you have any queries.

I posted the wee on Monday and got the results back by email today.

The test is still £60 but they send you a booklet that costs another £5.

They are called ESPA now.

I hadn't thought about the glue and play-doh - he has been known to eat PVA...

Will give it some thought. Thanks for relating your experience, silverfrog

no worries

ask away, if there's anythign you want to know.

if your ds has a tendency to seek out gluten stuff (eg eating PVA) then you probably need to get good at hiding/locking away a lot fo stuff.

eg some moisturisers have milk products in, shampoos can contain gluten (Aveeno, for eg, has oaty stuff in), oh, a million and one htings, tbh

DS (age 8) did the test last October and showed gluten and casein peptides. He had been gluten free for a while (or so I thought - made a few mistakes) then casein free after the test.

DS has ADHD and we have seen a good improvement in his behaviour and school work. He is also on Equasym medication and he used to have 25mgs each day but with the diet we were able to reduce the medication down to 10mgs. I am hoping if things keep improving he wont have to have the medication at all.

Over the Christmas holidays he had a break from medication and he was lovely all holiday.

Think the diet is definitely worth a try

I've just sent for this for my son but! He has a wheat allergy so i wouldnt expect it to show up. Does this mean he can't do it? He's obviosuly wheat free for the allergy and he was allergic to dairy but his bloods show he's not reacting allergically to diary now, but I still worry he has a problem with it.
For those of you doing gfcf diets, have you found any good cheese substitues? how about milk, do you use soya or rice or non at all or something else?

there is, imo no good cheese substitute. it's just notpossible, and all the ones we (well, i say we - dh and the girls are dairy free) have tried are bleurgh!

milk: I used ot use a rice milk substitute, but it wasn't good for dd1.

we trialled using A2 milk (goat, sheep, buffalo - the protein is slightly different) and it was so-so. but not great.

now, both girls have no ,=milk substitute. I do worry about their calcium intake, but do my best with leafy green veg, chick peas etc.

there was a study which showed that weight bearing exercise was as important as calcium intake for bone strength/density etc.

the Sunderland test is different form standard allergy ttests, in that it si looking for digestive breakdown by-products. as I understand it, you can be clear on standard allergy tests, but test positive on Sunderland test. it's a different animal, so to speak.

does you ds still have other gluten porducts? (barley, oats, rye?) if so, then the test will still be valid as it tests for gluten peptides, not just wheat.

Thanks for that silverfrog. Shame about the cheese (he loves cheese). Yes my son still has oats, barley etc just not wheat. I'm aware that it is a different thing to the allergy tests. This is why I was looking at it as I know he's not reacticng allergically (i.e he no longer comes up in hives and throws up) when he has milk, but I still feel he has a problem digesting it.
His poo stinks (sorry) really really bad which I feel can't be good.

Slighty off track but has anyone noticed a difference in soiling issues on a gfcg diet? My brother still has issues and has asd. I'm wondering whether it may be worth considering for him too.

yes, rancid smelly poos would be an indicaor that somethign is not as it should be...

dd1's poos pre-gf/cf were awful. and for a couple of years afterwards, as we were ironing out niggles, they were not good either.

word of warning: we tried out genius bread with her, and it led ot some nasty, nasty poos (no idea why)

since last summer, dd1 has had good oo. smelly, but in a poo way, rather than a battery acid way (which they were beofre), and well formed, rather than mushy (sorry for the graphic description!)

I was considering doing the Sunderland test for my DS but what concerns me is the fact that I've never yet heard of any parent ever being told that their child DOESN'T need to go CF/GF. Surely there should be some? I'm not arguing at all that dietary changes can't make a huge difference btw, just genuinely interested if anyone has ever been told their child can go away and enjoy eating gluten products

my step daughter has AS, and her results came back negative from Sunderland, if that helps at all.

That's v interesting, silver, thanks. And v reassuring!

To be fair - I wondered that too.

But we owe to the kids to try it, even if it doesn't work. I should hate to be thinking 'what if we'd....' at a later stage.

no worries

my step son also (dyspraxia issues, and also digestive issues, so thought it might be worth a shot testing, as the sibling rate may be as high as 50%, apparentyl)

interestingly, he did test positive, albeit only slightly, but in view of the fact that he didn't have a dx, was a healthy teen (digestion aside - constipation and ulcer issues), Sunderland said they felt they couldn't totally recommned an exclusion diet, and if he wanted to try it he should approach with caution, as it was a severe change ot make for someone who was not really exhibiting many symptoms which they would expect the diet to help with (the pain response, the sweating, rancid poo, etc)

so even with a positive test they didn't recommend the diet.