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Can someone help me with our Sunderland results?

(11 Posts)
catski Wed 24-Sep-08 13:01:33

They seem a little inconclusive to me....

I had our son tested last week - he is 17 months old and although he points at things in books when asked, he hasn't started pointing out things of interest in the environment or imperative pointing.

Our results came back today and it says that there are small levels of IAG, and no specific target peptide peaks.

It also says that as IAG is present but not ast he biggest peak, they couldn#t give a significant indication that using a gluten free diet would be beneficial.

So, IAG is present, but in small levels. In a neuro typical child would you expect to see no IAG at all?

kt14 Thu 25-Sep-08 14:20:58

just got mine back a couple of weeks ago and it showed a significant level of IAG in ds1's urine and recommends a gluten free diet for him. You can always contact them for more guidance, I found them really helpful.

It also said that high levels of IAG were to be expected in many close relatives, and in the booklet it talks of IAG levels also being higher in people with dyslexia, ME and other conditions which would probably be considered NT.

However, when I mentioned all this to our paediatrician on Monday, he said IAG was meaningless and that he had no faith in the Sunderland research!! (I don't agree btw)

Jimjams is the lady in the know though, she may be along to help...

catski Thu 25-Sep-08 14:52:05

Thanks kt14. I just spoke to sunderland actually and they were very helpful, although I'm still not sure whether our results are good, bad or inconclusive so I may email instead so I can re-read. My husband has a telephone consultation with our son's paediatrician in sweden on monday. He will have been sent a copy of the results, so I'd like to be as informed as poss!

I think she said yesterday that the results were not typical of a child with autism (and I think, by that, she meant moderate to low functioning autism), but that they wouldn't rule out an autism spectrum disorder. However, the fact that IAG is there at all baffles me. She also said that 10-15% of the population who would be considered perfectly mentally and physically healthy would still show some presence of IAG. However, with my son not doing any true declarative pointing, and the presence of IAG, they both feel like little signposts that merit further investigation.

She also said that with my son being so young (he's just gone 17 months), his urine would be quite diluted, so she wouldn't expect to see much activity anyway, and that the results may be quite different (ie higher) in a years time when he's had gluten/casein in his system for longer. Even though the explanatory letter said they couldn't say that a change in his diet would produce any significant benefit she suggested I give the dairy free diet a whirl anyway and suggested switching to rice milk and occasional soya cheese. Thinking about it I'm now confused as to why she suggested casein free rather than gluten free, given that IAG showed up rather than the casomorphin peptide.

As with your experience, some paediatrician's are supportive of a change in diet, and some aren't. Mine looked non plussed when I mentioned it to him a month ago when we first took our son, so I don't know how it will go on monday. We're hoping to get a referral to a christopher gillberg's team (although unfortunately not gillberg himself as his waiting list is about 1.5 years) at gothenberg university, so I hope the paed will do so as there is no other option but to go through him.

Interesting that you mention dyslexia (I must get the booklet out again!) - my husband suffered from this, I wonder if it's related.

Although the test hasn't come back completely positive, it hasn't given me the peace of mind I was hoping for and I'm feeling pretty low today. Not really helped by my mum going "He's pointing he's pointing!" when really he's just sticking his forefinger out by rote at nothing because he knows grandma goes wild with the cheering and whooping if he does that. When I point this out (pun intended!) she flounces and says "Right, well I just won't BOTHER then." I know she's as stressed about it as I am and just look for positive signs.

Sorry for the long ramble - sometimes it feels a bit better to write it down.

I really hope you see some benefits from the change in diet for your son kt14. How old is he? The lady said yesterday that the very young toddlers should show signs in about 3-4 months on a gluten free diet, and the older ones in about 10-12 months. Good luck and best wishes for you and your family!

kt14 Thu 25-Sep-08 22:26:40

Thanks so much catski, ds1 is 3.1 - we're getting everything in place to begin the gluten free diet, breadmaker and recipe books ordered etc. I found aspartame made a massive difference to ds1, found in the sugar free squash I'd been unsuspectingly giving him. This difference showed up within 24 hours, with increased eye contact and shared attention - it was truly amazing!

The paed has insisted we see a dietician before we begin, and solemnly warned me that ds1 would no longer be able to eat things like sausage rolls. I refrained from saying that I don't think ds1 has ever eaten one in his life anyway, and it wasn't really going to be a huge sacrifice if it improves his language and social skills!

Know just how you feel about watching them like a hawk for pointing etc. I started doing this with 13 month ds2 when he was just 9 months, thankfully pointing began at 11 months and hasn't stopped - it's the ease with which he does all the proto declarative pointing, plus pointing to and on request which shows me just how differently he's developing from ds1. Curiously ds1 has also been pointing at everything in the past week, he has pointed in the past, but never as frequently as he does at the moment. It seems to be a fluctuating skill for him and I can't explain why.

I didn't look at the Uni of Sunderland test as being a diagnostic one, and was initially surprised at how closely ds1 seemed to fit their profile. His "autistic" symptoms are very mild, and his issues are far more language based rather than typically autistic. The few indicators we had from your son's age were late and infrequent pointing, low shared attention, and slow development of language.

You still have plenty of time for intervention with your ds, should he need it, and it sounds like you are doing a great job in getting things in place for him. I would maybe eliminate casein for one month and note changes, and then possibly reintroduce casein if no improvement noted and eliminate gluten as a comparison. Do let me know how you get on!

jimjamshaslefttheyurt Fri 26-Sep-08 09:09:11

catski- my understanding is that its the relative amount of IAG that's important. So it's a key indicator if it's the biggest peak (DS3 had a test at 16 months and his IAG peak was whopping, with caseiomorphine present too).

They never say don't do the diet, but the people I know who have had success ( as we have) have seen very dramatic results within days. I do know people who tried it anyway - even though there was no IAG big peak and after many months they saw no difference. It might be worth a short trial, but if it's going to work I would expect to see something within 2 weeks. And something quite dramatic (that could be a deterioration to begin with!)

kt14- don't expect much from a dietician. I was made to go and see one when ds1 had his test and she told me a load of rubbish. She said that Paul Shattock says you have to challenge the children with gluten every 3 months. I checked this suspicious statement with Paul Shattock as he said "I say enough rubbish myself without people making stuff up for me" She also suggested star charts and looked at me suspiciously when I said ds1 didn't understand star charts (he still doesn't aged 9). She then seemed to think I had MSBP because ds1 picked up the toys at the end "who says this child has autism?'. God I'd love to wheel ds1 back into her now.

kt14 Fri 26-Sep-08 14:27:43

DS1 had a large IAG peak too, have been advised not to test ds2 at present, as he is only 13 months and presents no symptoms (as yet, anyway) Would love to get DH tested, just out of curiosity. Don't know if he'll approve the cost on that basis though!!

Well, I've decided to start both boys on a gluten free diet for a three month trial from 1st October (for ease, and so I can get everything in!), regardless of seeing a dietician. Hopefully, (despite what the paed thinks) I'm capable of giving them a varied enough diet to keep them both alive until the dietician appt in a couple of months..

Breadmaker arrived this morning (exciting but another contraption to clutter up the kitchen), found a cereal both the ds' like (some gorilla balls thing) and also some corn pasta which they'll happily chomp with veg sauce. We try not to have too many biscuits and cakes around anyway, and I think I can stretch to making a batch of gluten free biccies a couple of times a week.

Does playing with toys eliminate suspicion of autism in some people's eyes? DS1 has always enjoyed playing (functionally) with toys and does so throughout any appt I take him to. And it also reminds me of when we took him to an ENT specialist, who told us we could stop worrying about autism, as ds1 was sitting so nicely to have his ears checked he couldn't possibly be autistic. The misinformation amongst professionals is so frightening.

misscutandstick Wed 01-Oct-08 14:48:35

sorry to interrupt - but i noticed a difference in DS5 on day5 of milk-free diet, he was so alert and 'alive'!!! By day3 of the gluten-free diet, 5wks later, DS5 was screaming at everything, violent self harm (head-banging, face scratching, nipping, etc) and it took nearly 2wks for him to calm down again! Hes been CFGF for nearly 3mths now - and i can tell when hes nicked somebodys crust or leftover cereal!

I was advised on here to get the sunderland test done - but at £60 a go, and his behaviour worsening by the day, including his already high intolerance for cows milk... well i decided that what the hell, may as well give it a go. and what a HUGE difference its made to his life!!!

DS5 is still a bit peculiar (but very loveable!) but he is happier and calmer and copes better with life.

kt14 Wed 01-Oct-08 14:57:16

interrupt away, I can definitely see differences in DS1 on certain days, and am trying to work out what causes it. About to go gluten free, and then will also trial dairy free.
And removing aspartame caused the same virtually instant improvement in ds1 that you mention, misscutandstick. How the paed's can deny that dietary changes can work baffles and irritates me beyond belief.

just about to go and make my first gluten free loaf. fingers crossed it's edible..

catski Fri 03-Oct-08 20:50:58

Thanks for the replies people. Sorry it has taken me so long to respond - I seem to have been flat out since getting back to sweden this week, but I really do value your input.

Son has been casein free for just over a week. Maybe it's just coincidence (and possibly due to spending the last two weeks at Grandma's Pointing Boot Camp at my parents), but he is much more pointy in the last few days, pointing at pretty much everything actually but still not usually all that bothered if you're looking or not.

I know a lot of people said that pointing came on very suddenly with their children, but we really seem to have had more of a gradual development over the last five weeks from nothing at all to pointing when asked at pics in books, then pointing at nothing in particular in the envirnoment, to a bit more focused pointing to stuff in the environment (and very occasionally looking to see if you are also looking). This morning he did his first imperative point - to his dummy.

I'm really pleased with his progress over the last month but not sure what to do with his diet in the long run - remain casein free? Reintroduce it at a certain age? Become gluten free too?

Haven't told our health visitor about removing milk as I think she'd have a breakdown (she's already a bit thrown by the fact I don't give him välling - a very traditional swedish milk/wheat based drink best translated as gruel which is packed full of gluten and arguably the reason why many swedish people are gluten intolerant), although I will talk to the paediatrician about it when we see him in a few weeks as I'd really like to speak to a dietician to make sure he's getting all the right stuff. Husband has also persuaded the paediatrican to refer us to prof gillberg's team for further assessment so maybe that will give us more of an idea of where to go from here.

Hope all is going well with everyone else's children.

misscutandstick Sat 04-Oct-08 10:14:40

good luck witht the bread KT - omg ours was a complete disaster! looked more like porridge than dough!!! can i add a bit of a tip??? the reason we knead bread dough is to activate the gluten into doing its job - acting as a 'glue' thats why bread dough is slightly elastic.... however as gluten free bread doesnt have gluten, DONT bother kneading it, it will only serve to knock out any air that its managed to capture and will turn into a weapon rather than a foodstuff, just thought id mention, sorry if you already know that.

CATSKI - hmmm gruel - sounds yum... not. as for reintroduction... id wait and see, ASAIK most kids dont lose the intolerance (if they are ever going to) until at least 5yrs, but as his mum you'd know best. Good luck with whatever you decide.

jg3kids Sat 04-Oct-08 17:19:05

Hi all,

I've not posted before, i just lurk in the background.
My son has autism and we started him on gf/cf at 19 months. We did do the sunderland test and he had peaks show too. I know paul shattock through an autism charity I'm involved in (www.treatingautism.com) and he said to me recently that corn and soy seem to be probs too for asd/sensitive kids. The markers that appear have not been identified yet but they strongly think it's soy and corn. While you're at it you may as well go the whole hog (especially if your child is young) and take out table sugar, artificials (colour and flavours) and msg.
We call our son the little caveman!
There's a book called 'Bread Matters' and they ferment gf grains to make bread. When you ferment grains they naturally rise - this was the way bread was originally made.... or so they say!
We've seen great things in the last 2 years with our son, his leaky gut is much better and his diarrhoea has gone.

He still has other problems that don't help his autism! Allergies, vitamin and mineral deficiencies, inflammation, candida, bacteria, immunity issues, lead and mercury poisoning ..... i could go on but I'll save it for another day!!

J
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