ASD and Milk protein intolerance

[Junestar6]

My son (8) has been diagnosed with ASD last week by PCAMHS. Has been under speech therapy for 5 years, and has been on IEP for 3 years.
As a baby he was dairy intolerant from 9 wks, and was switched to soya at 13 wks. I have been reading about links / diets etc... for improving symptoms of ASD.
I am cautious, because i know it will be v.hard to cut out Caesin / Gluten. Has anyone tried this, and was it a success? Also, anyone other children with ASD that had problems with Dairy / Milk protein as baby?

it is hard work cutting out casein (nad maybe gluten as well??) but well worth trying to see if it makes a difference.

have a look at this website www.treatingautism.co.uk

Thank you, I will.

dd1 is gluten/casein intolerant.

we didn't notice issues with ehr as a ababy, particularly, but hse has been gluten and dairy free since she was 2.5 (she is now 6.5)

It can take a while to get your head around the issue, but it does become a way of life. I barely look at 90% of the supermarket now, as cannot buy most of it for them.

It has made ahuge difference for dd1, and so has been well worth it.

Talk about Curing Autism (google it, sorry am on ipod) is also very informative.

Hi, my son (now 13) dx dyslexic, DCD with hypermobility and very recently Pervasive Developmental Disorder (not before time!) was so difficult to control as a small child, doctors didn't help him, just prescribed me Diazepam! So I turned detective and cut out dairy and all additives which helped a lot, when he was about 7 we also cut out gluten, it helped us both to cope with life as it almost stopped the tantrums he'd been having.

He started eating a more normal diet about 2 yrs ago and seems to be ok on it, hard to tell what's teenage stuff and what's environmental but anyway the special diet helped hugely at the time.

My DS was also milk protein intolerant as a babe, and is still totally dairy free. It's easy once it becomes a way of life : )

He knows it gives him awful runs so has no desire to eat chocolate or ice cream with his peers.

Have you heard of the Sunderland Test? link here The theory is than DC with ASD process casein and/ or gluten differently which causes stomach problems and creates peptides which can cross the blood brain barrier and act as a morphine type drug on the brain.

They will send you a sample tube for a urine sample to send them to test for these casein or gluten peptides to see if you should avoid either or both. Has been going for years and seems to have good effect for many. You have to be on a normal diet before urine sample so peptides show up.

See we couldn't do the Sunderland protocol from scratch as DS can't tolerate ANY dairy. Dairy via my BM nearly killed him.

It does make me wonder if there is something in it though as both the dairy intolerance & ASD are strong in the family history, albeit not always in the same individual.

I can see so clearly how it would affect children with a milder form of the intolerance than DS has. Dairy totally strips him of the ability to digest any foods so it seems clear that developing brains wouldn't get the nutrition they need. For this reason I'm very interested in the Sunderland research as I feel it may impact Ds's own kids in due course & perhaps help spare the next generation (he has an asd half brother) from the grief this one has experienced.

Sadly I can also see how the Sunderland research may only apply to a subset of autistic children, and that it can't be the only cause for this awful disability. For this reason I'd caution any parent who tries it not to expect miracles, just in case dietry causes aren't the underlying issue for your child. I do think it's worth doing and properly, with clinical supervision to ensure the kid gets balanced nutrition throughout any trial as you have nothing to lose until you have tried.

Yes, bochead. I do think it's a subset as there have been so many anecdotal stories of its success. Unfortunately my DS wasn't one of them. 7 months of gluten free under an NHS dietician with no improvement. Fish oils really did work for us. You can't get a casein peptide spike if you don't have any dairy, though! I do usually caution people of its effectiveness due to our own failure but I still think it's worth a try if you are committed to trying anything (that will cause no harm.)

I get scared when people try it without proper clinical nutritionist supervision. Cutting out a major food group does mean you have to replace those nutrients in other ways. In the UK most kids get an awful lot of the fat soluble daily vitamin intake via dairy, whereas most lay people only consider the calcium content. I also hear anecdotally that asd children tend to be very fussy eaters that self- restrict their diets, (not necessarily in a healthy way), which can be a real issue.

Nutritionists have no medical status or recognition. You really need a qualified dietician.

But, yes, DC with ASD in my experience can be very fussy eaters. When we did our 7 month GF trial it was with the agreement of our paed who referred us to the paediatric dietician at the hospital. Also our GP was sympathetic and allowed us to get GF food on prescription. This was 7 years ago when supermarkets had very little 'free from' stuff on the shelves. GF is a lot easier to follow without impacting nutrition than CF. We only tried CF for 3 weeks at the recommendation of the Sunderland people as he didn't have a big casein spike.

I do take your point, bochead, and will qualify any recommendation with advice to try these diets only under a dietician. We were recommended by the Sunderland lot to do that.

whoops - sorry that is an important correction for anyone thinking of trying it!

It's such a long time since DS was a baby being monitored VERY closely by the hospital. Thanks for calling it out, as I know I get all the different job titles confused. It's critical the supervisor has recognised medical qualifications.

Sorry, bochead. I posted too quickly before reading through all your post, so now I think we crossed. You are exactly right to be cautious of recommending these diets without proper medical supervision. And I will be more careful with my (non - medical) advice!