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Has anyone introduced a gluten and/or dairy free diet for their child with ASD?

(21 Posts)
WellTidy Mon 18-May-15 11:30:15

DS is 3yo and although has no diagnosis yet, almost certainly has ASD plus severe speech delay plus sensory issues and who knows what else.

He is having meltdowns a few times every day. I thought it w s because his understanding was poor, and therefore everythng was a shock to him. But now I think it is because he wants to get his own way even if something isn't possible (eg to watch the trains in the train station for 30+ minutes when we only have 15 minutes spare before an appointment).

His (private) SALT has sugegsted that we take him to a dietician for tests for intolerances and deficiencies. This mekes sense, as his diet is so incredibly limited that he may well be definicent depsite having supplements. As to intolerances, I'm not sure. His bowels work fine, his skin is clear (though he is very pale), he has lots of energy etc.

But if taking things out of his diet might help him progress and make things easier for him, and possible help with the meltdowns, that would be amazing.

DH wants to take out gluten and replace with gluten free products, and do the same with dairy (rice milk instead of cows milk etc). I know that dairy and gluten are in lots of things you woudln't expect (including random things like sun lotion), so I know it won't be easy.

Has anyone done this? I will be speaking to the dietician in June and will push for tests. I just wonderde whether it would be useful having him tested, and then ruling things out whilst waiting for the test results.

blankgaze Mon 18-May-15 12:30:19

If you take gluten out of anyone's diet then test for sensitivity, it gives a false reading. Also by removing gluten then re-introducing it, you can cause a sensitivity where one did not previously exist.. Most of the gluten free products on sale in shops are pretty dire and very expensive, in the future if you want to go down that route, I'd suggest making things yourself.
Cowsmilk free is easier but again needs a lot of time and attention and home cooking. Lots of cowsmilkfree things contain soya which is also an allergen for a lot of people.

I'd say better leave modifying his diet until you've seen the dietician. Please make sure you see someone qualified, there are all sorts of people setting up as dieticians but there's no general regulatory body as far as I know, I could say I am one (I'm not)

The behaviour example you gave about trains, that's called transitioning, he doesn't understand that something needs to follow on to what he's doing, he doesn't understand first this, then that then the next thing. He's stuck on 'this' and doesn't understand the tasks for that day and what order they happen in, so his anxiety increases to the point of meltdown. It's absolutely not about him just wanting his own way, it's a neurological processing deficit.

Some of the things in here may help, it's one of Polter's Fact Files.
www.sompar.nhs.uk/content/26210/33259/Fact_File_for_Early_Years_-_FINAL_-_120912_%283%29.pdf

I do understand you want to make things as easy as you can for your son, but at his age please wait until you know what you're dealing with and have a diagnosis before you implement any dietary changes e.g. a lot of his food refusal could be sensory-based.

Pagwatch Mon 18-May-15 12:32:54

Yes, I have done it. It was enormously helpful.

PolterGoose Mon 18-May-15 14:07:14

Dieticians are regulated, it's 'nutritionists' and 'nutrition therapists' that aren't and anyone can claim to be one.

Some people say it helps, it's not something I've considered as it would leave my ds living on rice cakes and smoothies. Just be careful with an already restricted diet, whilst wheat based products are highly fortified many replacements and alternatives aren't.

WellTidy Mon 18-May-15 14:40:01

Thansk for the replies.

I will see the dietician and have him tested for intolerances and deficies. And then consider introducing gluten free or going dairy free. I am already giving him supplements (fish oil and a good multi vitamin).

I have found a register of dieticians, HCPC, and from there, a firm is listed with specialisms in paediatrics and allergies, ADHD and ASD.

I am sure that he has ASD. I couldn't eb more sure. Unfortunately, it is proving incredeibly difficult to be referred for an assessment and of course the assessmnet process itself will take time.

I am trying to be proactive, as life is pretty challenging for DS and all of us at the moment. Thanks for the informaion about transitioning. That's exactly it. I ahve been using visual aids to help him know what to expect ie the sequences for the day, but he can't either seem to udnerstand or he can't retain the information. I am just keeping trying.

Pag, can I ask please how you went about the changes in diet, what the positives and any negatives were, and whether the changes you saw in your child have been lasting?

Pagwatch Mon 18-May-15 14:57:22

WellTidy,
I tried it with DS about 15 years ago.
He suddenly regressed, lost skills and his previously broad diet changed. He ended up literally eating only five foods - almost entirely gluten and dairy.
He was pale and had periodic constipation or diarrhoea.

The positives were, better sleep, calmer, some speech. The negatives were mostly explaining it to people smile

All these years down the line he is still gfcf but his food choices are much much better. He eats more than I ever imagined he would and his diet is perfectly healthy and broad.

To be honest I think you can only make your own judgement upon whether it is worth trying. I know that's not very helpful but it doesn't help every child and if we are already dealing with a lot, it can be overwhelming.

I'm content it was the right choice for him,mit helped him engage with us and feel less anxious and distressed. I also know now that I am allergic to milk and my DD has multiple complex allergies - things that I didn't know then.

I'm not sure that help you but it's where we are now.

WellTidy Mon 18-May-15 15:35:42

Thanks Pag. It does help. DS has a narrow range of foods too, but it may be a bit broader that your DS was enjoying. DS will only eat:

Toast (not untoasted bread) with honey, heinz tomato soup, pizza with pepperoni, pasta pesto and chopped bacon, cooked cocktail sausages (no other sausages), all crisps, chocolate and biscuits, banana/kiwi/strawberries/raspberries/grapes/blueberries, yoghurt and custard. He will drink milk and squash and water.

He used to eat nearly everything sad.

I would give anything for him to find a means of communication. If that was speech, then brilliant. But signing would be great. He can't communicate really at all. He is happy in his home environment, but the difficulties come when we need to leave the house. And I have anotehr child who needs to be in places like school and clubs and parties and whatever, so leaving the house is not really negotiable.

Theer is a history of allergies on my DH's side.

I think its got to be worth a go.

ArtichokeHeartsAppleCarts Mon 18-May-15 19:52:50

We went gluten/casein free about 2 months ago shortly before DS3's dx of ASD. I can't eat wheat or dairy anyway so the transition wasn't too difficult.
I also felt "it's got to be worth a go"

bitbap18 Mon 18-May-15 19:56:33

Agree with blankgaze. Don't start taking things out without advice. You can't really test for an intolerance,other than to remove it from diet and see if it helps.

My hubby and DD are both gluten free and ASD (Aspergers) but the gluten free is nothing to do with being ASD. They are both intolerant to gluten, in different ways and symptoms.

With a limited diet already, I'd be wary of removing more things, and would certainly want a dietician involved first.

WellTidy Tue 19-May-15 08:39:52

blankgaze I am interested in wghat you wrote: "by removing gluten then re-introducing it, you can cause a sensitivity where one did not previously exist".

I haven't come across this before when I have been looking into what could be the downsides of going gluten free. The downsides I had found were that gluten free foods were moe expensive, some contained higher sugar than non gluten free equivalents, and you may have to cook more from scratch.

Please would you tell me what you've based this on? I am not having a go, honest I'm not. I'm just trying to understand this and need to read more about it from another source too.

WellTidy Tue 19-May-15 08:40:51

Artichoke Please would you tell me how you went about the changes in diet, what the positives and any negatives were, and whether the changes you saw in your child have been lasting?

ArtichokeHeartsAppleCarts Thu 21-May-15 10:46:40

Yes will do tidy. Need to get boys out for some fresh air now but will post later smile

ArtichokeHeartsAppleCarts Fri 22-May-15 21:17:18

We ate lots of gf/cf anyway so it was bread mainly that was the big change, plus I cut down then stopped buying stuff like crisps/biscuits and became ultra careful about checking food labels

DS now has a probiotic with omega every day (bio kult infantis)

Animal parade multivitamins, as they don't have sweeteners etc in them

I replaced all bread type stuff with genius bread-DSs fine with this. Other gf breads are pretty grim ime, Genius tastes pretty good

DSs ate gf ham anyway, ditto Youngs gf fish fingers, gf pasta, pure spread, helen brownings speedy sausages (look like chipolatas)

Oatly milk is nicest cf milk I've found-non organic one has added calcium, but i mainly use it for baking, none of my DSs have wanted/liked milk as a drink

I now make a lot of home made chicken stock and cook pasta/rice noodles in it which ds will eat

I have slowly but surely cut out as much processed food as possible-crisps/biscuits/sweets etc as DS was eating these then not having anything much for lunch/supper. DS only eats strawberries atm fruit wise, used to eat apples but has given them up for now

Orgran do nice gf/cf biscuits but again if I buy these DS will eat them and not much else so have to limit. Orgran also do a good gf pizza base mix

I tried making home made fruit juices with a juicer but DS won't drink them

I try and get DS involved with cooking/baking/touching different foods etc

Positives

DS has stopped spitting and seems less aggressive since shortly after going gf/cf and is coping better with interactions with other children/going out and to new places. Fewer meltdowns. These things may have happened anyway without dietary changes I know but I personally have faith in the gf/cf diet. Poos are better (more healthy looking/less offensive smelling)

An unexpected side effect is that DS2's years of constipation were cured overnight when we cut out gluten

No negatives

DS looks healthier to me, is less slender and hasn't become any more picky than before, appetite is better too a lot of the time.

It's early days for us but so far so good

Hope some of the above waffly ramble might be helpful

WellTidy Mon 01-Jun-15 09:20:24

Artichoke Thanks very much for your post. Weve been away, and I hadn't seen it.

We are taking DS to see a dietician next week and I think we will probably go with a gluten and dairy free diet after seeing her. They said that we need to stop giving him supplements for 2 days before they do a blood and urine test. Your suggestions are all really good and I know I will come back to your post again and again.

Where do you do your supermarket shop to be able to buy these gf brands? And if you do o out to eat, do you find that any particular restaurant chain is able to acccommodate your son's diet?

I am still trying to find any support for blankgaze's post

"by removing gluten then re-introducing it, you can cause a sensitivity where one did not previously exist"

This is something I am interested fin finding out a lot more about. If anyone can show me any studies or reports where this is credited , I woudl be grateful.

ArtichokeHeartsAppleCarts Tue 02-Jun-15 22:31:26

I get everything delivered by Ocado.

Forgot to mention before they also do Dove's Farm gluten free flour which is great for baking, makes lovely cakes and cookies smile (SR and rice flour ones both good) I've switched to unrefined sugar also and use less than in recipe, still taste v sweet

Sacla do a gf/df pesto

We haven't been out to eat for ages. DS finds it stressful and doesn't tend to eat anything so we have picnics instead. I don't know of any chains that do gf except wagamamas used to, but not sure if they still do.

Since I last posted DS has taken a banana off the worktop and eaten it (after not touching them for months) gone back to eating apples (sometimes) and rice, which he hasn't wanted for months. Also cheese (Ossau Iraty ewe's milk one) occasionally. So he seems to be almost embracing a healthier diet and branching out a bit for now, which I'm really really surprised about.

DS seems much more playful/interactive/less stressed recently too-not sure if it's anything to do with gf/healthier diet but it's lovely to see smile everything seemed a bit bleak a few months ago

Hope it all goes well at the dietician's

ArtichokeHeartsAppleCarts Sun 07-Jun-15 12:17:17

Please ignore oatly milk suggestion, I haven't used it for ages and have just realised although it's cf it's made with oats

WellTidy Mon 08-Jun-15 08:49:51

Thanks*Artichoke*. We are going to see the dietician on Wednesday, so I think the ball will start rolling pretty soon.

blankgaze Mon 08-Jun-15 09:21:45

Sorry WellTidy I've got a lot on atm and missed your question.

I'm pretty sure that's what happened to me, stopped gluten for a while, ate something with it in and almost instant massive bloat, pain, horrible symptoms. No idea where I came across it as a 'thing' but I'm not into making stuff up, honest smile

dd's now adult, been dairy-free since birth and has allergy/intolerance to a shedload of other foods (but not nuts and does not want to give up gluten although I think it could be a good move)

I'd recommend Pure spread, I use it for all baking, experiment with a little ex virgin olive and ex.v. coconut oils in cooking. Coconut oil's pretty good for skin care too, not in direct sunshine of course. I keep a range of milks in to vary the tastes for her, oat, rice, soya, coconut.

SquigglyLine Mon 08-Jun-15 09:42:06

I think (though I may be wrong) that research has shown that removing gluten then reintroducing it only causes greater sensitivity in people who actually have a problem with gluten in the first place. Most coeliacs are more sensitive to gluten after going gluten-free (but if they didn't go gf would end up very unwell indeed over time). I went gluten-free after my DC was diagnosed coeliac. On the odd occasion I eat gluten (when out without DC for example) I have no problems.

My coeliac DC was a very fussy eater before diagnosis who would only eat a tiny range of food. After several years of gf, he is a fantastic eater who eats a wide range of food. If you have a problem with gluten, it massively affects everything about eating, I think.

Just looking at your list, thinking about gluten (I don't know much about dairy free). It's not too hard to go gf with this. Your main problem is the bread, pizza dough, pasta and biscuits. These need special gf alternatives, which are easy to find, but cost more.

Toast (not untoasted bread) - would require special gf bread
honey - fine
heinz tomato soup - fine
pizza with pepperoni - needs special pizza dough (we make our own). Easy to find pepperoni/salami that happens to be gf /
pasta - needs special gf pasta
pesto - should always be gf, but have to check label. Sacla is fine.
bacon - fine,
cooked cocktail sausages - have to find gf ones, it's possible.
crisps - some are okay, some aren't. No to Walkers. Yes to Seabrooks, chocolate - have to read label. A lot of Cadburys is okay.
biscuits - specialist gf required, banana/kiwi/strawberries/raspberries/grapes/blueberries - fine
yoghurt - should be fine but check label
custard - should be fine but check label
milk/water - fine
squash - check label. Many are fine but no to any barley water ones.

bitbap18 Thu 11-Jun-15 22:34:46

Welltidy, my hubby and DD are GF. We've had great success eating out at pizza express (they do GF starters, mains likes salad and pizza and pudding like chocolate brownies and panna cotta)

Another good one is Toby carvery. They have a complete GF menu, and nearly all of the carvery is ok. They make the veggie gravy GF too. We were very surprised at how much they could have!

Dominos do GF pizza for delivery if that helps.

We do our main supermarket shopping at sainsburys, as I personally find they have the best and nicest GF stuff. We prefer their own brand bread and rolls. You can buy pizza bases, we regularly make our own with their bases. There's tons of choice, and more and more coming all the time. Hubby has been GF for two and a half years now, and the change in the choice in that time is huge! However, it is all much more expensive than normal food. I try and find normal GF things in the normal isles where possible, but snacks for children I find hard.

The rare occasions DD has friends over after school, they've all eaten GF and not noticed!

I've not tried baking my own things much, mainly because I don't need the temptation of cakes etc, but my mum bakes my daughter stuff and bakes with her when she stays. She made her birthday cake this year and it was yummy.

There's also lots of cook books out there if that's your thing.

WellTidy Mon 15-Jun-15 09:28:30

Thank you all so much for your input. I hugely appreciate it. Our appointment with the dietician went well, and we will slowly be introducing GF and CF foods into DS' diet, whilst trying to increase his exopsure to new foods using the foods that he already enjoys.

I am going to find this thread so useful as we progress.

We have already had success with M&S GF chicken nuggets, coconut milk (mixed with full fat milk), GF cheerios imitation cereal, Sacla GF pesto, the Pure spread (this is a very useful recommendation indeed!) and GF bread.

Thank you all.

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