Gluten and milk free diet advise please

[chuckeyegg]

Okay I have decided to try DS on this type of diet. The gluten free breads in the shops are a terrible price I do have a bread maker. Any good books? We are vegetarin too just to complicate it more!

He has quite a restricted diet at the moment
Breakfast - Shreddies or porridge.

Lunch peanut butter sandwich and an apple.

Dinner pasta with a tomato sauce and cheese or pizza.

He diet is pretty much gluten.

Has anyone seen good sucess from this diet?

Thanks so much. x

I would not want to be the only voice, as have not tried the diet for long myself, but I know well one mum who has had her child on a gfcf (and loads of others things excluded too) diet for 3 years. The kid is as severely autistic as ever, there is no change (though she convinces herself always that there are minute changes in his "babble" or "eye contact"). The kid is now always chronically constipated too as his diet is basically protein (meat) and vegetables with very limited (high alkaline?) fruit. So she is now also giving him laxatives all the time. He has constant red cheeks and excess saliva (which I'd thought was something people say about too much gluten?). Just trying to put an alternative point of view. I'm sure that, done reasonably, a diet that excludes certain things can be ok, but it is not the road to "recovery from autism" that this woman has been told by a band of nutritionists and homeopaths (I had wanted to type charlatans actually). I would say that a 5 year old needs all major food groups present in their diet, and putting a young child on what is essentially the Atkins diet is not sensible. I stand ready to be flamed, but I am just telling what I see with this one particular case. I have also noted over the years that some friends claim the diet is having fabulous effects when they seem to me to be quite possibly attributable to other things (ABA, maturity). I do not buy the "peptides" theory, that certain foods make the kid go crazy. My boy is hyperactive all the time, there is something permanent in his brain chemistry due to genetics causing that. I think those who go round offering people like my friend hopes of a "cure" through expensively-imported vitamins and minerals are no better than snake oil salesmen. I think the same about chelation actually. One mum took her kid to the US for serious chelation - he ended up hospitalised and now has regular fits. This stuff is just not scientifically-proven, and can be dangerous imho.

I do think some autistic kids have bowel problems, and perhaps less gluten and dairy can ameliorate those problems, but I don't see any evidence that these diets make the autism any better (except insofar as the kid's tummy is more comfortable.) Sorry, I have seen many people drive themselves insane with the diets over the years and I just have never seen much change in the autism (though, as I say, I am sure that for some kids it makes their digestion and therefore comfort levels much better).

Ok, just as with the ABA threads, I am sure there are others on here who will vociferously disagree. Am happy to do so on a friendly basis.

Could you ask gp to refer you to dietician/allergy specialist for testing first to evaluate if there are any signs of intolerance? They can do skin prick tests and/or blood tests to test IGE levels. Then if necessary advise on alternatives to gluten and dairy.

It is possible to find alternatives and still maintain a healthy diet but it is a real pain both for you from the organisational point of view and for your ds learning to accept the restrictions to his diet.

We've been down this route with dd who has severe eczema and multiple allergies and although she was ok with it at first, carried along by the novelty of it, it soon led to major conflicts when she got fed up with being denied foods others could have.

I don't have any experience with it from the point of view of impact on autism though. It was interesting to read sickof's impressions and it would be good to hear from others who have tried the gf/cf diets with their dcs with asd.

Ok do bear in mind this is only another Mum's opinion. My son is dairy-free due to severe intolerance that caused failure to thrive.

I really firmly believe that NO child should be restricted from major food groups without a GOOD long term medical supervision (I think the professional to ask for is a clinical dietician) that also includes a significant amount of parental education as our diet in this country has been based on milk and wheat for generations. In our case we were supervised for four years.

I'll talk about restricting milk - cos that's what I know. Most children in the UK obtain their fat soluble vitamins and a % of their iron & magnesium from milk. These need to replaced with other food stuffs, not just the calcium. As an example Vit B12 defiency in young kids can cause neuroligical damage in infants/young children that mimics autism to all but the most untrained eye so this vit aspect is not to be underestimated.

I'm lucky - my lad isn't a fussy eater so will chomp down his tinned sardine & fresh spinach sarnie (with the soft bones left in!) with relish and tuck into his plate of quinoa without a fuss. I look around at all the NT kids around me and realise regularly he's the the exception, not the rule. However to encourage good eating habits he helps me cook 2 or times a week - I do things like add new types of veg to old faves like pizza to get him to try them. We grow some of our own food too - he's at the stage where he helps choose new varieties like purple carrots or root parsley that challenge his asd rigiidity. If he's grown them though - he'll eat them ; )

Personally I think as your child is already restricting his eating patterns you need to do some behavioral work as suggested above before restricting diet further. This isn't an easy option and you need to understand that it may be for his health's sake you find yourself medically advised to give him foodstuffs you find morally repugnant even if only temporarily. Not as extreme as vegetarianism but I have never eaten pork yet my son does - it's more important to be flexible than "moral" iykwim.

Food from other cultures has been a great source of inspiration for me - the Japanese eat far less dairy than us as part of their staple diet and I have Japanese rellies so was able to learn to cook this cuisine. I also like cooking from scratch (baking is my stress relief) so have found it far less of a strain than many other Mums I've met in similar circumstances over the long term - you'll learn to loathe supermarket labels!

Via this forum I googled and downloaded the Sunderland protocal recently - i strongly suggest you follow their recomendations as they seem to make a LOT of sense to me.

Fully agree that if you are going to make major changes to diet, you should:

read up on it fully. the SUnderland protocol is excellent, and also books by Natasha Campbell MacBride, Karen de Felize (A lot of interesting info on digestive enzymes), Marilyn Le Breton.

I would advise getting professional input, but have found nhs dieticians to be very dismissive of Sunderland et al - often without actually knowing what the protocol entiails. It seemed to me (and I have been through the system with both my dds) that they were caerign to the lowest common denominator - assuming I woudl just cut out some foods withut replacing nutrients...

agree with bochead on that - it is not abut cuttign out some food groups, it is about replacing them (if you go ahead) to ensure a properly balanced diet.

I have used a nutritionist with lots of success (form nutri-link), but have also seen a couple who were happy to take my money and give very generalised advice (ie seemed to know less than I did!). Ask aroudn if you want a private nutritionist - word of mouth can be a good place to start.

Take a look at Treating Autism, Talk Abut Curing Autism (hate the name, the site is good though) and Autim Medical (name might have changed - also might be subscription now) websites (sorry no links - am on phone)

I have done a gf/cf (plus a few other bits) diet with both my dds for years now. dd1 is severely ASD, dd2 is borderline AS. It was a fantastic thing for dd1 - she has really changed. Immense differences in her, and it remans the best thign we have ever done for her.

dd2 now had gluten, but it doesn't always sit well .she does, however, have a similar gut profile to dd1, and so I believe it was a Good Thing to keep her gf/cf from weaning.

as a starting point I would go via Sunderland: they have been involved in this area for years, and speak a lot of sense, medically/scientifically speaking. They are very nice and helpful too.

Agree with going through Sunderland first with a urine test as if they don't recommend it, it may not be worth bothering. Don't go it alone, get your GP to refer you to a dietician, (not a nutritionist) and make sure you aren't accidentally missing out some vital nutrition.

We did the Sunderland urine test and they recommended trying casein free for 3 weeks alone as he didn't have much of a casein spike and casein clears the system quickly. It had no effect. We then tried gluten free alone for 7 months as it takes up to 6 months to leave your system, and he had a moderate gluten spike on the urine analysis. Again no effect, but we thought it was worth trying. Our paed and GP were supportive and we got GF flour etc on prescription. A month after the GF diet ended we tried Eye q omega fish oils and saw a significant developmental leap 6 weeks later.

Just reread silverfrog's post and I wasn't disagreeing with her. I have heard lots of horror stories about nutritionists who aren't a medically recognised profession. My NHS dietician was supportive, as was paed and GP, that may not be the norm!

Also, try any changes one at a time or you won't know what has caused any improvement! Just general scientific common sense!

EllenJane - a quick question re the GF on prescription. Did you have to go through the paed for this? And was it just flour? Did you then make bread for him at home and buy other bread for the family? Or generally how did that work? (okay, maybe a few quick questions )

We've been mulling over the GF, however, DS2 has such food issues that we have to be careful, as he will quite happily just not eat rather than eat something he doesn't want. He just can't afford to lose weight. It's something we were planning on discussing with the paed next time we speak to her, but hoping you could let us know how it sorted out for you.

Our paed (Ms de g) was supportive. She wasn't sure if it actually had any benefits and was interested in our results. She referred us to the dietician and our GP was sympathetic also, especially as we'd gone through the paed, but I understand that they were quite unusual in that. We got GF flour, wheat flour with the gluten removed, and made our own bread for him alone as it was v expensive. This was 7 years ago when there was little 'free from' in any supermarket bar Waitrose! nowadays I'd probably try the supermarket stuff, you can even get fish fingers! Eating out is the hardest, but I bet he doesn't do much of that, anyway! Lots of home cooking, potatoes and meat no problem, processed food, trickier. Gluten free pasta is fairly easy to come by as are crisps, watch the different flavours.

Eating out? LOL nope... not a lot of that!

Thanks - didn't realise it was 7 yrs ago! How long did you try it for? Does it really take 6 months for it all to be out of their system? We were hoping for a 2-3 month trial.

We did a 7 month trial after first sending a urine sample for analysis to Sunderland. Cost something like £60, but they are the people researching the problem and were very friendly. We heaved a sigh of relief when it had no effect! But I know of a number of people locally who swear it made a big difference, so we gave it a good go. I'll try to find the link, they are called something else nowadays. DS was 4, easier to make those changes when they are young and can't argue (much.)

Sunderland autism research unit link here

Thanks, I'll look into it. And yes, while we've noted some slight improvement on Omega 3, I hesitate to try any major diet changes. My list of "to do" things is on overload right now as it is!