Driving myself crazy over whether to go dairy/gluten free...

[Eloise73]

The last few days all i've been thinking about is whether or not we should try to go dairy and/or gluten free for DD. She was diagnosed with autism this past summer and just turned 3.

Her communication is extremely delayed, she does lots of echolalia, knows hundreds of words but doesn't really use them meaningfully. There is no 2 way conversation but she will ask for things she wants using usually 2 word phrases and can usually understand simple commands like 'please give your coat to daddy' or 'pick up the spoon and put it on the table'.

Her eating habits are appalling. She was a pretty good eater when I was home with her. Then I had to go back to work and her childminder would give her rubbish like she did her own toddler and my dd who used to eat my homemade soups (even fish soup!) started asking for biscuits and crispies (her word for quavers) all day. She also loves milk and would drink 5-6 bottles a day if you let her. We swapped her to Lactofree milk at our paediatrician's recommendation as she had lots of tummy problems as a toddler and her nappies were very soft/runny. Changing to Lactofree made her poos normal and she seemed happier.

At the moment she seems to only eat cereal (her favourite is cookie crips - thank goodness they fortify these cereals...), toast, pasta in any form, milk, yogurt, some eggs, beans and of course biscuits and quavers . She will eat vegetables if they're hidden in her pasta dish or pureed into soup (sometimes). She will only eat a bit of apple or banana and won't drink smoothies and doesn't like juice very much.

We're at our wits end about what to do in relation to her diet. We wonder if her communication will improve if we try making these big changes to her diet but then we worry that she won't eat at all. She is a light eater anyway and its quite distressing when she has days when she hardly eats at all.

Have any of you been in a similar situation? Did any of you see huge improvements when you removed dairy and/or gluten? Any advice would be very gratefully received, thanks.

I know very little about gfcf diets, but having read your posts it sounds like your instincts are screaming at you to try it.

I can't imagine your daughter would suffer much if you tried it for a week just to see. If she isn't eating at all, go back to regular food. If it helps, I would imagine the results, at least in terms of happier mood, would show during that time?

Good luck

was in a similar position with DS aged 3 (but never got an ASD DX in the end). I just couldn't bring myself to do it - as at that point going to cafes and having cake was a big pleasure of his, and without the DX of ASD I was scared of Munchausen's type accusations. So I cut down the milk and yoghurt dramatically (no milk at home)but let him have milk in nursery, and didn't cut down on gluten at all. Cutting down on milk did quickly improve his stools, and slightly improved his alertness/concentration.

if you google for sunderland autism research unit, they can test urine and give an opinion as to whether gf/cf is likely to be helpful.

Oh how weird, I could have written your OP, though my DS is a bit less fussy (but younger).

I will be watching replies with interest.

I think we will try it.

I would say try it.

I didn't want to go ahead and try it without some kind of say-so, so we got dd1's urine tested at SUnderland.

On the basis of the results, I read "Diet, Intervention and Autism" by Marilyn Le Breton, and did a lot of research on the web (mostly on MN ) but also TACA has some good resources on this. There is also Respectrum, but a lot of the site is subsciption only.

Treating Autism is also a good resource.

Some of the indicators that the diet might be beneficial are:

manky poos - foul rancid smelling stools, large poos, possibly loose, possibly constipated (or both!)

seeming "addicted" to gluten/casein foods - if, as your dds diet suggests, all she craves to eat are gluten and casein containing foods, then it oculd be an issue.

other symptoms are: red flushed cheeks/ears (permanently, or haivng just eaten), night sweats - dd1 was always really hot overnight, bumpy skin on the upper arms (and elsewhwere, but upper arms usually) 0 looks like spots but isn't, sometimes a bit red like a rash bt is there all the time).

there are probably a lot of other symptoms, can't remeber now - dd1 has been gf/cf for over 4 years now (apart frm this mornign when dh was supposed to be getting them up, and wanted a lie in, and the dds crept downstairs and raided the larder - campaign led by dd2 - and ate my chocolate browi=nies )

If you don't want ot wait for test results, you could go ahead and try it anyway. if you see a reaction (and this is usually a bad reaction, as chidren go through withdrawal, so more bad behaviour, increased demands for the foods, tantrumming etc) then it is probably hving some kind of effect.

to be true to the Sunderland protocol, you need to cut out:

all gluten (wheat, oats, barley, rye and derived products - this can be hard ot spot as eg mlat vinegar is made using barley malt so no-go, bran could be wheat, oat or rice, etc. sometimes even raisins can be an issue, as some manufacutrers coat them with wheat starch to stop them clumping together )
al casein (again, often hidden in other ingredients)
all sweeteners, flavourings, preservatives and colourings
MSG

it sounds hard, but really, it's about getting back to cooking form scratch, reading ingredients labels, and only eating "real" food.

it has been the best thing we did for dd1 - it gave her the head space to be able to learn, really, and come out of her withdrawn, hazy, dreamy world and observe what is going on around her.

withinn a month, she was talking more, and talking to us more, rather than just talking, iyswim? she suddenyl knew to come and find me to talk to me, rather than sayign somethign in the other room and expecting me to hear/understand/respond. she had a better pain response (before she had no pain response, afterwards, she could recognise she had hurt herself, and more importantly tell us she had done so, and where), she is also a lot less anxious too.

hth

Agree with everything silverfrog said. What can be the downside of trying it, though I would say give it 6 weeks to get past any initial withdrawal. After that, you'll either see a difference or you won't, and though I'm not pretending it's easy, at least to start with, it's been so, so, so worth it for us and for ds2.
And, you know, even if you see a difference and you still don't want to go on with it, you can still stop, it's not compulsory, you do what you can do.
We saw very similar changes in ds as silverfrog describes, we didn't do Sunderland as there was a massive waiting list, and tbh, ds was by then eating only cereal and milk, bread and pasta with cheese. So we kind of knew he was in a kind of addictive state.
We've done it for 7 years now, ds is nearly 12, and it's become easy, and he's now at a stage where he can monitor it himself. He asks if things are g and c-free, because he can remember what it was like when he ate that stuff,and he doesn't want to go back to that.
There's a lot of advice on here and elsewhere, if you do decide to do it. Good luck.

hi eloise,

I decided to put DS on it last year when he was 3. I didnt go via Sunderland though. Instead, I booked an appointment with local NHS dietician and went over all the foods he liked to eat and my proposed alternative to check it was all tickety boo.

You will be amazed what foodstuffs there are out there-most kiddy food have a gf substitute. So for example, my DS loves sausages. I now buy either Marks and Spencers or Debbie & Andrews-both have 97% pork.

Anyhoo, been doing it for over a year and noticed most improvement in areas such as stimming. Before he would be constantly spinning round and round and hitting himself. These behaviours stopped almost immediately.

I substituted cows milk for goats milk however he seemed to crave milk constantly so gradually cut it out (he is casein lite-still give him little stars fromage frais and cheddar cheese as I am too chicken to stop totally).

I think you have nothing to lose and if you need any help, feel free to pm me x

Thank you all for your messages and advice. I had a long chat with DH today about it. He isn't very keen on doing a huge diet change to GF/CF because he thinks DD is not really in her own world a lot.

I guess he's right in the sense that she doesn't really have any stims and does interact with us but of course on her terms. We agreed to start cutting back the dairy to only 2 small bottles of lactofree and a petit filous a day if she asks for it.

We're also going to look into some gluten free products like biscuits etc that she so enjoys eating.

I feel ok with this, I suppose i'll always wonder whatever we decide to do so i'm going with DH on this one for now and we'll just wait and see what, if anything, happens with us just being more vigilant with her diet.

Thanks again, you guys are awesome :)