alk to me about this 'Sunderland Test'

[AtYourCervix]

Do i understand correctly? is there a way of testing for gluten intolerance (as opposed to coeliac)?

DD has tested negative for coeliac (including biopsy) but her diet is crap (carbs, bread etc) and I'm almost convinced her dreadful behaviour (and pain/nausea)is made worse by her dreadful diet.

So what do I do?

Yes. You contact them, they send you a form, you send it back, you pay them £60 and send them frozen pee in a tube.

They tell you whether the person whose pee it is is gluten intolerance and / or thingie - casin (however it's spelled) it's the other big one. people talk about gf/cf diets.

My two had the test and it came back gf but not cf.

They both, on the strength of that, got gf food on prescription.

hmmmmmmmmmmmmm.

DD is still waiting (13 months so far) for assessment. would that matter? would she need a 'real' diagnosis before testing? or can anyone do it?

yep, as hecate says.

the form is a thing of wonder - who knew they could ask so many questions about toilet habits?

it's really simple - they send all necessary test tubes etc.

dd1 tested off the scale for gluten intolerance (seriously, they said they'd never seen a score so high). negative for casein intolerance, BUT she still reacts to casein, so is casein free too (dh is dairy intolerant, so it might be that, not the incomplete digestion side of things)

google Sunderland ARU (they are called soethign else now, but can never remember what), and take it form there. they have a really good booklet that explains it all too (for completeness sake, you are supposed ot cut out sweeteners/colours/flavours/msg too)

anyone at all can do it - it's a research project going on at sunderland uni.

they like to know if there is a dx (there are questions on the form) and they send a good, thorough write-up back

my stepson tested slightly positive for gluten issues, but given he has no dx, they were reluctant to recommned gf. he only tested out of interest, though, as he has no ASD-like issues, but does have some dietary issues, and there is a more than 50% sibling sensitivity rate

They're called ESPA now.

My DS tested a bit positive for gluten but very high on casein (dairy).

He's now on a GFCF diet. It has helped him enormously as he's not half as 'fogged up' as he was. Not easy though - and he hates GF bread.

We cannot cut out flavours/colours and msg. He lives off crisps.

gf bread is foul. I tell you which is the best though - juvella. It's nice and springy, not bitty and crumbly. He might like that.

We get it on prescription, but I think you can also buy direct

oh, gf bread is rotten, agree.

dd1 did really like Genius bread (was the first bread she ate, she was never fussed before, and I can see why!) - and it doesn't seem as grim as others - but it didn't agree with her for some reason.

she seems just as happy with grim DS rolls now, though, odd child

it depends.

there are quite a few "symptoms" and pointers which would sugges thwether it is a good idea or not.

will have a hunt, and post a list a bit later.

in general, what is his diet like? does he seemt o eat gluten/dairy (when allowed) constantly?

if you do go for the test, if you want to know about casein, he would obviously have to go back on dairy so that it can be tested for...

has made a huge change for dd1. her stims and anxiety really decreased, and her pain response normalised. she completely stopped the (minor amounts of) headbanging etc.

I think it's worthwhile for any ASD kid myself.

It's another thing to tick off the list.

My DS was a total carb and dairy addict so that was a massive clue.

Everybody who knows him can see the difference in him. It's no cure, obviously, but his ability to learn and look at the world calmly has increased loads.

You've nothing to lose.

dd1 was never really a picky eater a ssuch - has preferences, yes, and sometimes they have become entrenched. but she eats a wide range of food within her limited diet, iyswim.

so, checklist. these are signs that somethign might be up. obviously, they could all be down to something else, too.

hyperactiity
sleep issues (late to settle, seeming quite restless even though tired)
giggling/screamin gfor no apparent reason (giggling in particular was a big factor with dd1. she would jst burst into uncontrollable giggles, eg when alone at night before going ot sleep)
excessive thirst
craving/dislike for certain foods (theory is they crave the foods which give them a high, avoid the ones not worth it)
hot and sweaty, especially at night (this can sometimes lead ot thougts of CF, as if digestive issues are present, and very sweaty, these can be factors)
history of glue ear/ear infections
pica
diarrhoea/constipation (either/or, or both)
swollen tummy - lots of bloating and wind
catarrh/runny nose
poor temperature regulation - stays hot/cold longer than usual (also poor temperature awareness, so will go out in the snow in a t shirt and not feel cold)
red ears/face (typical "english rose" complexion - pale with flushed cheeks, very rosy)
dark shadows under the eyes - really dark smudges, looks like hasn't slept in a week, even though you know they have
pale, pasty comlexion (looks ill, even though you knw they aren't)
aches/cramps/tiredness (lethargy - seems to tire more easily than peers)
history of allergy in the family (inc asthma, eczema hay fever etc)
gut issues in the family (crohns, coeliac)

now, obviously this list is not exhaustive, nor diagnostic.

but if you get enough ticks, it might well be worth doing a sunderland test - as spinkle says, another thing to rule out, and no harm doen (other than the stress of collcting a urine sample! but they send a kit to help with that)

My DS used to have the wettest sweatiest feet. He was the world's hottest baby too..Never had any bowel things though

When you read these sorts of checklists it seems to fall into place.

They turned our results around in 2 days via email - and it's pretty thorough.

They'll send a leaflet with the test kit (it costs £5 on top of the £60) and this will help you unravel the results a bit - though they provide a summary in plain english too!

They found 9 morphine-like substances in DS' wee that he was making from casein

they are really nice and helpful. they send a big report going through th test results, and happy ot talk on phone etc.

spinkle - dd1 was a very hot baby too. she still struggle swith temperature regulation - eg if out in the cold, she will take a couple of hours ot warm up again once inside, or if running about on a hot day she takes a couple of hours afterwards to stop sweating/cool down. she can't regulate her body temperature at all.

My eldest became less aggressive after removing gluten from his diet. He also had fewer soiling and smearing problems - he soils in his pants several times a week, instead of every bowel movement!

My youngest only started to talk after coming off gluten. Yes, it was that dramatic. I can't explain it and I suppose it could have been coincidental timing, but he seemed to unlock when we removed gluten from his diet.

It is really worth a monster form and sticking a bottle of pee in your freezer

I htink that's a really good way of describing it, hecate. dd1 unlocked too. less dreamy, more aware, just more there, and more of her iyswim?

we always say it gave ehr the headspace ot begin to learn - she was able, finally, to just be herself and absorb some stuff.

she started talking properly too, within the month, and also had a normal pain response (banged her knee, badly, on a nasty corner of furniture - previoulsy might have notice,d but even if she did, woudl just sit and wail, no indication of what/where/how, and wouldn't come to find us either - this time, she turned ot me, started crying and said "sore". when I asked where, she tapped her knee, and said "sore knee, banged" - this was within 3 weeks of taking gluten/casein out)

Glad it's not just me . he really did turn into, well, I look back to how he was before and it's like he was a shadow of a person. or an impression. you know?

or maybe I'm just dramatising it

all I know is now he talks and he has his own likes and dislikes instead of just going with what others put in front of him. honestly, you could just steer him round by the shoulders. he was so passive.

my eldest, otoh, threw glass at me, smashed everything, painted his room (and face!) with poo, headbutted his ta, attacked other kids... now he is a calm(er ) and mostly gentle person and it takes much more to make him go nuclear.

I really think it's the gluten. I don't know how or why, but it was doing something to them.

oh absolutly with you on the shadow/impression bit. dd1 was passive too. just there. barely batted an eyelid at anything. just existed.

might work up to polite interest in somethign, if we were lucky.

and now she is a cheeky, full of life little girl, with a whole shed load of opinions

you know the theory, right? the opioid excess/incomplete breakdwon meaning the are, essentially, junkies? I guess the pssive bit was just a permanent high, and in the case of your ds1 the agression bit may well have been to do with a come down/cold turkey.

dd1 is always aggressive if she has an infringement - a few days later she is guaranteed to bite/kick, and deliver the most painful chinese burns . but then I don't reckon I'd be that great when going through withdrawal, either...

Yes, I have heard it said they are addicted to it.

I can tell if they have accidentally had gluten. They go bonkers grin]

Bit late, sorry, but my DS2 did the Sunderland test and was OK for caesin but fairly high for gluten. We did GF for 7 months with no change in him at all. We breathed a sigh of relief and stopped. Within 6 weeks he had one of those developmental jumps they do now and again to surprise us. We were really glad it was after we went back on to gluten or we'd still be GF! Worth a try but doesn't work for everyone.