My friend's DS has been tested for coeliac disease and dairy intolerance by their paed and they came back clear. Does that mean there's no point doing the Sunderland Test or are the levels of casein and gluten peptides the Sunderland Test measures different to coeliac disease and dairy intolerance?
They are testing for a different thing entirely. Nothing to do with dairy intolerance or coeliac disease. The peptides are (theoretically) created in the leaky guts of some children with ASD which then pass through the blood brain barrier causing opiate-like chemicals to enter the brain giving the symptoms of an drug user. That's my completely uneducated take on it! It is a theory only, but I dobknow of many parents who swear by a GF/CF diet. You need to be eating gluten and casein normally before the urine sample is taken so they can analyse the peptides that are found in it. You'll get a graph showing gluten and casein peptide spikes if the DC has a problem. That's the time to start the diet.
We tried this 7 years ago, but unfortunately DS2 didn't have very pronounced spikes and the 7 month diet made no difference. Fingers crossed for your friend's DC.
The test led to a dairy free diet that had no impact on our particular issues. Recently, my son was undergoing a medical assessment with the doctor. We got to talking and I mentioned the Sunderland test. She was very dismissive. This is not necessarily my opinion, but when your doctor is telling you that, what are you to think?
That's interesting, B'sdad. It was my DS's Paed that gave me the details of the Sunderland test, referred us to a dietician and wrote to our GP so we could get GF/CF on prescription. I think it's a theory only, but not all professionals dismiss it.
We had the Sunderland test for DS1 and DS3. Both ended up gluten free and in ds3's case on goat's milk (slightly unusual response to the results I know, but there were reasons, and it worked well).
DS1 is severely autistic (aged 12 now). He was gluten free for about 6 or 7 years - he had a lot of bowel problems probably partly related to too many antibiotics. Gradually his bowels improved until they were very normal and we noticed that transgressions (accidental) no longer affected him (any mistakes with the diet had been very obvious when he was younger). So he's now not gluten free.
DS3 was gluten free and goat's milk only for a couple of years. He is now aged 6, typically developing (was a bit dodgy for a while) and seems fine with cows milk and gluten now.
They have become slightly more independent of Sunderland University recently, but it's still the same people as the Autism Research Unit. Do check with a qualified dietician if you start it, not a medically unrecognised 'nutritionist,' so you don't miss out on any essential nutrients.
It might be that your DS has a slight dairy intolerance, but read up on it. It was the behaviour that I was looking to change as my DS didn't have any bowel problems as such (just soiling!) It had no positive effect on my DS so after 7 months we happily abandoned it, with no adverse effect at that stage either. We waited a month, started EyeQ and he had a leap in development a month later. Whether he was due one anyway, who knows?