All the 'special diets'

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Digestive/GI issues are apparently not particularly correlated with unusually permeable intestines. Bolded because I'm only just beginning to understand the implications of this new data myself, and realise that for many it will seem counter-intuitive after all these years of emphasis on the GI stuff.

Food opioid peptides absorbed in unusually large quantities as a result of increased intestinal permeability ( in a third of people on spectrum ), may not set off any warning bells except craving for milk and/or wheat products, and/or spaced-outness of various kinds.

According to the Shattock/Sunderland ScanBrit study publ in April removing casein and gluten ( our main food sources of opioid peptides ) from the diet may improve attentional and socialising capacities.

Digestive issues may point to celiac disease or other gluten-intolerance, ( with all the ways in which a chronic autoimmune system reaction can impact on the brain and other organs ), or fructose&fructan malabsorption, ( which can cause depression and other mental issues by blocking tryptophan and zinc ), but an absence of such symptoms does not mean that a child is not being affected by gluten and casein.

The food opioid peptide effect is "silent", no helpful diarrheoa or bloating or whatever to send up red flag, just addiction to pizzas, bread, cheese, etc.

NB. 1% of the general population now have celiac disease, and between 7% and 15% of the population may have some sort of gluten intolerance, though, so although there is no evidence that people on the spectrum suffer from more cedliac disease than anyone else the GI, neurological and other discomfort and damage that it can cause could be a factor in as many as 15% of autists just as in the general population.
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In retrospect my daughter was different before she even ate any "food". She was always a fussy eater and breast-fed until she was 4. My wife tried several times to wean her, but the meltdowns were overwhelming and she ultimately gave in. I am very skeptical of a nutritional basis for development of autism and think there's much stronger scientific and anecdotal evidence for a genetic basis.

You can only go on what works for your child. I decided to try this gf/cf diet about two weeks ago on my 12 yr old and within two or three days I noticed she seemed happier, the sarcasm and perpetual bad temper were largely gone, and she was far more interactive with me, instead of shunning any communication in favour of her book/computer. She has always of her own accord rejected milk announcing from very young she was allergic to it though I never had her tested .
Another thing, when she was very little two or three , and for years and years she always had really unusually foul smelling poo, for such a young child.
This appears to also no longer be the case since beginning that diet.

However I wish now I'd gone about the diet quietly , at least for the first while, because although there have been these marked improvements she now says she resents being gluten free and "I'm trying to change who she is , "and "it's not the real her, this gluten free version" . She feels really strongly on this and I feel a real dilemma, because we ended going round and round in circles with me saying how much I'd seem improvements and her saying"I don't care! I don't want to do it" and "Oh, so I wasn't good enough for you before? " So I'm left feeling I didn't handle the whole thing too well.

Any ideas on how to get her to comply with this?
You can imagine how happy I was when I saw those improvements, to throw that away would just be madness.

Maybe agree on an experiment with her, with the "results" to look for/evaluate and make decision on about future diet being how happy she feels.

Ideally the gf period would be 6 months, because that is how long it takes gluten to leave the whole body rather than just the intestines, and because would probably have also got over most of the cravings by then, but that is almost certainly too long in this case.

If she already doesn't eat dairy, ( cheese, butter, yoghurt, etc aswell as milk? ) then she should be relatively free of opioids in the intestines and most organs ( other than the liver which holds on to things for longest ), after about 3-4 weeks.

Discuss with her what period of time she would be willing to carry out the experiment, at least three weeks if possible, pref 4 weeks/a month, after which would reintroduce gluten for the same period, and see what she thinks of the results.

Make sure that she is really willing to do it "properly" and won't eat gluten at school or elsewhere during the "test" period, and perhaps arrange to keep a diary/journal, which she and you both fill in, which keeps account of how she feels, behaves, etc, both during the gluten-exclusion period and the gluten-eating period.

It is an experiment, and I think that might appeal to an aspie/autie, as a rational thing.

Good luck.
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Thanks for that, very helpful.
Yes she's never liked youghurt the only dairy thing she does like is grated cheese on stuff sometimes, but if it's not in the fridge she never asks for it.
I will try putting it as an experiment to be evaluated by herself, though what baffled me is the fact that when she was arguing about it she already said she didnt feel different off gluten, yet theres no way I imagined those improvements.
However have also got her grandmother on the case who emailed her to help with persuading her to continue, and generally my mother is able to put things more diplomatically than I am so that may have helped too.

I also know I have to put the work in to make the gfcf delicious if possible. Not the worlds greatest cook at the best of times, this is a challenge to me , and unfortunately my daughter also strict a vegetarian, which makes it even more of one. I wish she would stop being one but she's not open to that.
I end up being vegetarian too cause it's easier (and I dont really mind.) So we eat a lot of rice, lentils , beans, potatoes, vegetables, and various tomatoe based sauces to name a few things and luckily she does eat eggs so protein from those.

It is a challenge also what to put in her lunch box, she hates the gluten free bread so I dont buy it, I was giving her corn chips but every day not good, and now today will put in a little carton of gf baked beans which will hopefully meet with her approval. Any luchbox ideas? Though if you homeschool I guess this is not a problem!

That's interesting that she doesn't eat dairy "much", doesn't ask for it if it's not there, doesn't seek it out in any way, because that actually suggests that she may not in fact be affected by/addicted to "food opioid peptides" ( which are in both gluten and casein ), after all, and that if gluten-exclusion does have an effect on her it is because of a gluten intolerance/sensitivity ( and its effect on her via an autoimmune system reaction ), or because she feels better because of excluding the fructans that wheat contains ( along with rye, onion, leeks, asparagus, and certain other veg and fruit esp apples and pears and which can provoke quite bad GI symptoms too ), and which in some people ( quite a few people actually, maybe as many as 40% of the general population may have very limited fructose and fructan absorption capacity ), are not properly absorbed and go on to mop up/leech out zinc and tryptophan and can cause depression, anxiety, poor sleep, etc.

Interesting anyway. I hope you manage to experiment enough with a gf diet to see if it really does make a difference.

Also interesting that she says that she felt no different. Perhaps she didn't in fact, and it was a combination of your feeling hopeful/positive about a new approach and her willingness to try it out for a while which looked so "different"? It's fascinating how one's perception of things changes depending on "context" and "frame" of mind. I am very curious to hear how things go. I've been through the same sort of "muddled" impressions about the effectiveness of a gf diet in the past, just about myself! ie. wondering if I was imagining it, etc. Luckily I had that "fourth day" experience ( on my first ever exclusion-fast ) to remember, as "proof" that my mood and cognition is affected by my guts and my diet, but the effects of food intolerance in some people can be subtle, take time to show clearly too. Good luck with finding out the "truth"!

Yeah, corn chips every day not so great, ( flavoured ones have gluten on them anyway, and plain salted are pretty dull without avocado or salsa dips to accompany them! :lol ).

Transportable food: hard-boiled eggs, potato salad, rice-cakes with various toppings, ( avocado mush, spicy or herby bean and lentil-purees/patés, like hummus, peanut or almond butter, vegetable patés ), nuts and seeds, raw carrot and cucumber and celery sticks with interesting dips, including blob of "yeast extract", tasty rice-salads with mushroom or broccoli, and tamari, ( not soya sauce it's got wheat in it ), olives, tinned fish if she eats fish, and bananas and other fruit.

Hope that helps. Best wishes!
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I don't think anyone on this board thinks diet issues can create the development of autism. It's more that if an already autistic child is eating the wrong things for their unique body, it isn't surprising to think that you would see more and more severe autism related problems. Remove that layer, and they function better because they feel better.

Hmm I wonder Ouinon now you've got me thinking, were those improvements partly due to my wishful thinking? I hope not! Well Halloween excesses meant the gf business slipped up but back on track now hopefully, and she has agreed to eat fish ("what will you give me if I eat fish? Answer, "A kick up the butt" ) Thanks for the lunchbox tips, at least some of those will be acceptable to her. Am persisting with the gf anyway, and cheese wise not so rigid. Other dairy she doesnt like anyway. But you mentioned onions and fructans, I would use onions a lot, everyday anyway. They would be hard to say goodbye to.

It is hard to work out what's what sometimes, with regards to improvement . Exercise also plays into the whole deal, but getting my daughter to do any is really hard work, and yet when she does it her mood obviously improves. In fact the only thing that works so far in that area is I make her take half hourly breaks from the computer to run up and down the stairs seven times! This she does willingly because I suppose she has the beloved computer waiting for her at the end of it.
Anyway thanks for all the help and knowledge re diet, you're obviously the person to turn to re these issues. Perhaps you should be a nutritionist? Or maybe you are one already.

That's one of the problems with this area... no scientifically controlled tests. There's no denying that wishful thinking could play a strong part in how people react or in what they see. I had a strong initial positive response when I was (erroneously) diagnosed as celiac and went gluten-free. Alas, it didn't last. Any kind of change can make us feel more positive for awhile.

My daughter has been on Failsafe diet since June. Halloween (and a pushover mom ) meant that she could have a few pieces of candy. We are still seeing the effects of that candy as last night she couldn't fall asleep until 11pm and she has been irritable, with a very low frustration tolerence, and far more non-compliant than usual. I think it is only after you flush out the offending substances from their system and then re-introduce something where you can REALLY see what those substances are doing to their systems. We have not ever tried 100% GF or CF but my daughter has reactions to Artificial Colors, Flavors and Preservatives. They don't "make her autistic" but they definitely have a negative effect. It is almost as if her skin is crawling when she has ingested these substances. I will be interested to see how long it takes for the effects of the candy ingested on Halloween to subside.

We avoid:

ARTIFICIAL COLORS (all): Yellow 5, Yellow 6, Red 3, Red 40, Blue 1, Blue 2,
Green 3, Orange B, Citrus Red 2
ALL ARTIFICIAL FLAVORS
NATURAL COLOR or flavoring: Annatto
FLAVOR ENHANCERS: Monosodium glutamate (MSG), HVP (hydrolyzed vegetable
protein), autolyzed yeast, disodium inosinate (DSI or IMP), disodium
guanylate (DSG or GMP), nucleotides (combination of IMP and GMP also called
I&G), 'broth',
PRESERVATIVES: sorbic acid, potassium sorbate
benzoic acid, sodium benzoate, other benzoates and parabens
sulfur dioxide, sodium bisulfite, other sulfites
calcium or sodium propionate, other propionates
sodium nitrite, sodium nitrate, other nitrites and nitrates
ANTIOXIDANT PRESERVATIVES: propyl gallate, other gallates;
tert-Butylhydroquinone (TBHQ), butylated hydroxyanisole (BHA), butylated
hydroxytoluene (BHT)