Have just had dd's Sunderland test results...

[silverfrog]

...and there are very high IAG levels.

So, where do we start? Will make an appointment to discuss with GP as recommended (presumably they might refer on to nutritionist?) and have been trawling archives for ideas on where to shop etc.

Any other ideas?

I have also recently had my results from Sunderland. Mine showed that my son didnt have significantly high levels. However I had already removed casein and we think that was his major issue. Should have done the test before the diet but was in such a hurry to get things going.

Anyway- we have got a nutritionist who is brilliant -really experienced in The autism field. She is guiding us through the procedure. With out her I would be quite lost- so much conflicting information.
We didn't go the NHS route because both the doctor and paed are sceptical about GF/CF and dont want to see the connection between diet and autism.

To be honest I have found the CF part quite easy. We had an initial issue with switching cows milk to soya but I have found there are plenty of things to cook without milk in or that you can use a milk substitute for. That is if you want to make meals form scratch. dont know how easy it will be to do GF/CF though. If you want ready made some Sainsburys have quite a good range.

Definitely recommend buying a GFCF book for recipe ideas and lists on all ingredients that contain gluten or casein.

Hmmm don't expect much from an NHS nutritionist. Bit outside their area of expertise.

DS1 & DS3 have very high IAG levels (ds1 is severely autistic, ds3 fine, but he's never had gluten and he became a lot 'finer' once we switched from cows to goats milk- yep still has casein but is high in a different form).

Basically you need to trail gluten an casein free (or changing to goats milk). Or you can use enzymes. I've written about various diet things here.

Before you start the diet try to get one of the medical professionals involved in your dd's case to authorise doing it. Sunderland have a policy of not re-doing tests unless there's someone who can take clinical responsiblity for interventions in between tests. If you ever want to do a retest to compare 'before and after' results they won't do it unless it's approved by such a professional.

OTOH you might not need a retest, but it's worth getting someone to support you in case there's a need some time in the future.

DS's Sunderland results suggested avoiding gluten and artificial sweetners but didn't suggest any problem with casein. Despite this, I saw a marked difference in him when we changed to goat's milk. Like a mist clearing IYKWIM.

oh do talk to Paul Shattock as well if you haven't yet, he's incredibly helpful.

Many thanks for replies.

We are BUPA covered, so nutritionist needn't be NHS - any tips on finding a reliable one? Have googled, but tbh don't even know what qualifications I should be looking for, and came up with a few in my area claiming to deal with autism related matters...

Is it likely that I'd need to re-test in the future? That had never crossed my mind - I was of the opinion that I'd trial GF/CF and if no improvement then not bother (hopelessly unscientific, but there you go)

Dd's results also suggest that she may not have a problem with casein, therefore we are going to trial GF first, as should be a noticeable improvement. Once that is implemented and settled, we thought we'd then trial CF.

Is there a massive need for a nutritionist, or would reading up on it suffice?

Silverforg I would say its very useful to have one. I dont know if its necessary.

If you are supplementing it is really important to make sure that there is balance of nutrients.Eg I found out that EPA is better absorbed with Zinc and Vitamin E. There is several things to consider some vits/mineral help others some inhibit them. Certain vitamins are made of more absorbable (not a word I know) stuff than others. Things like that is what a good nutritionist would be able to tell you.

As for finding a good one check their qualifications. Throw a few autism specific terms in to conversation and see if they know what you mean. Ask if they keep up to date with the latest developments? If you are in my area North London- CAT me and I will pass you on the details of mine.

Karen thirl I was unaware of the need for a medical professional to take responsibility- I have told our GP and Paediatrician what we are doing but they are both sceptical.

I wasn't aware of it either - I don't recall it being mentioned in the Sunderland information. But I saw an alternative therapist in October who suspected leaky gut and recommended J take a probiotic supplement (a proper one, not the Yakult type) for three months then redo the Sunderland test to see if there was a difference to his gluten levels. I contacted Sunderland about this but they couldn't do it because there was no medical professional directly involved in J's case who could vouch for the treatment I'd been recommended. By this time the therapist had moved abroad and I couldn't contact her.

The upshot is that if, like me, you research the pros and cons of the diet yourself and do it independently of medical advice, you can't get a retest. It has to be requested by someone 'in the trade' as it were.

As I said, you probably won't need a retest but it's worth considering in case there might be a circumstance where you would want to.

My boy has been gfcf for eight years and never hadthe need for a retest to date.
I found every NHS professional pretty useful - one or two downright obstructive. The private ones can be expensive and can have very hazy expertise. Sorry - that is all pretty gloomy isn't it! I have managed on my own with some good websites and a computer and used a nutritionist to get basic tsting done. If you go on some of the gfcf websites ( yahho have some good groups) you can then ask for a good nutritionist in your area.
BTW watch free from and supermarket ranges as they are often very high in additives or contain trace gluten or casein.
AiA ( www.autismmedical.com) are good and have some good resources when you join butthey are pretty hardcore

ROFL at typo...
I have found every NHS professional USELESS !

( actually my latest GP where we have just moved seems pretty fab so I may have to amend that. )

It's worth getting the Coeliac UK directory, which lists all products available in supermarkets (and by brand name) and whether they are gluten free. Some products (even some supposedly gf brands) contain a permitted amount of gluten so can't be guaranteed safe for a completely gf diet.

You can get it at their website, costs about £8.