gluten free diets and possibly also casein free diets??

[jennybensmummy]

im thinking of starting ben on a gf diet and possibly also a cf diet as for numerous reasons i think these could be affecting him, behaviour and also bowels etc. bit of bakground, ben is autistic, diagnosed not long after 2nd birthday he is now 3 and a half. in the last year and a half he has got progressively worse and also his diet has changed a fair bit due mostly to his age/development - he wouldnt eat anything that involved chewing much before 2 and a half yrs old. he is a very fussy eater and i just dont know how easy i can do this gf and maybe cf diet based on his small variety of food. can anyone help a clueless tired and very stressed mum??
bens diet at present consists of a few things and due to his sensory issues wont at anything warmer than room temperature, andthing mixed up - ie not seperateable usually, and he has certain textures he wont eat and he doesnt chew more than a few chews still so some foods are out because of that!! his current diet and please dont judge i do try my best and he does have a fruit allergy/intolerance except bananas, consists of

• fish fingers
• chips (but only one or two per meal)
• toast with butter on
• readybrek
• cornflakes
• sandwich with ham, or cheese spread
• bananas
• custard cream or chocolate biscuits
• crisps
• mashed potato with cheese
• fromage frais (ideally need to keep this for his melatonin to be put in!!)
• dairylea dunkers
• boiled carrots
• tortilla wraps with butter or spready cheese
• chocolate buttons
• chocolate mini rolls
• plain boiled pasta occassionally
• tomato ketchup
• fishcakes

and thats literally what he lives off!! any ideas?? is a gf or gfcf diet possible based on that??? i know if i put my mind to it i could work it out but im just so confused and dont know where to start or where to look and im just stressed and scared by it all!! thanks to anyone who can help

would he take rice krispies rather than cornflakes? with rice milk?
could you then coat fish in rice krispie crumbs rather than breadcrumbs?

or use gluten free bread to make the breadcrumbs? there was a news item today about [http://www.geniusglutenfree.com/ genius gluten free bread]] which tesco are now stocking which is supposed to be very good.

you can get dairy free spreads and most shops do a range of gluten free foods and biscuits. kalo do very nice rice cakes with dark chocolate which i pinch from ds because they are so tasty!

you might be able to get the gluten free stuff on prescription as they are quite pricey.

woops... that link should be genius gluten free bread

ooh ric krispies maybe, rice milk i dunno what does it taste like? does it have a long date as he doesnt have milk except for on cereals! is it expensive?? gluten free bread would work, and maybe that would work the fish fingers issue - thats mostly all he eats - eats them every evening!! not sure about on prescription as not been particularly advised to try it as such, but maybe if it works they will?!?! plus we dont have a permanent paed at the moment and the gp is useless!!

A dairy free diet would be very hard for him, looking at that list. What is he like with new foods that are reasonably similar to old foods?

not too bad but depends what it is to a certain extent, new foods that fit the criteria of not mixed - ie not cottage pie etc, not too chewy, not too sloppy, probably would be ok, he accepts odd things once or twice then refuses them after that only thing he has eaten for months now and nevr rfused is toast and fish fingers, the others are latest favourites but might go like others have in th past, hopefully not though as i have cupboards of old fad foods!!

well maybe he'd be alright with toast and pure spread (like marge) or switching to rice milk (thinner and sweeter than milk)

could you try gluten free frist and casein free after? Then you;re not ruling out everything at once, possibly unnecessarily.

Hello,
I have a few ideas from my ds.If you look in most supermarkets there is a good free from section.
My ds has the doves farm cornflakes which are gluten free.He also likes their gluten free lemon biscuits.He has soya milk and yoghurt although I know soya doesn't suit all.
We make fish fingers something like this but substituting for gluten free.Just cut fish fillet into shape coat in egg,flour(gluten free) and breadcrumbs (gluten free).Same thing except with mashed potato for fish cakes.Can get gf/cf chocolate buttons porridge,pasta.
Someone on food linked to this blog which has some ideas.
Have a search in the allergies section which has some ideas.Apart from cheese most if fairly OK to substitute but tends to be more expensive.

oooh im going to go shopping tomorrow and investigate these things - without other half or he will moan at cost!! im so hoping that we can see an improvement as i really am at my wits nd with him and his problems and the lack of help from professionals!! do you think i could get slated/moaned at from any of them for doing this without their advice??

yes, they will moan at you for doing it outwith the guideance of doctor or dietician.

Have you requested a referral to a dietician?

noone will listen as we keep getting different locum paediatricians!! th hv is leaving on maternity leave, and the gp doesnt seem to believ in autism greatly!! who else could refer if anyone? or could i self refer??

It's the sort of thing you can do yourself. I'm just saying they will moan at you if you ever tell a gp you are doing this without 'supervision'

hmm, might give it a go for a few weeks then if some improvement ask for a referral based on that, or i could just blame one of the old locum paediatricians and say they said it was ok?! will see if i can refer him myself on monday i think, thanks

try it for at least a month, record any improvements (if you notice any), then tell gp and ask for further referral.

Well, that's what I'd do in your posiiton if I wnated to be listened to by medical profession.

It'll either work or it won;t.

thanks think ill try that, hopfully in a month we will have a permanent paed too which will help!!

hey jenny! DS5 is CFGF (wheat, soy,egg, too) it is do-able.

If you do end up with Dr Williams he wont believe a word of intolerances, but he is extremely willing to refer to a dietician to discuss it too, and offer any advice.

I agree with others - remove one or the other first (we went with dairy first) for 2-4wks, then the other - dont forget of course if symptoms seem worse for a while then you are doing the right thing!!!

Also be warned that the second one you take out will seem to have even worse side-effects - its something to do with having all 'opiates' taken out of them and then they go 'cold turkey' which isnt nice but only lasts a few days. I noticed a huge difference when we removed dairy within 5days! He really is a different child, and we can certainly tell when hes managed to pinch a crust from somewhere!!!

Incidentally my mother is wheat/gluten intolerant too, and when she removed it she suffered terrible withdrawal - headaches, tummyaches, nausea, dizzyness, and generally feeling really crap. But she looks soooooo much better now!!! shes gone a decent pinky colour instead of a shady grey, she is definately thinking quicker, clearer, and can stay focussed better! she doesnt get the runs anymore, have headaches, 3day tummyaches, bloating, and her asthma, diabetes and rhumatoid arthritus levels have never been so good!

sorry for the waffle good luck!

misscutandstick - did you do it on your own or was osmeone advising? (thinking of 10 yr old wiht aspergers...)

really interesting - i will follow how you do JBM.

MY DS2 has been gfcf for 10 years now.
I have never had any help at all and it is do-able.
The notion of how effective gfcf will be is oftne indicated to how much the child has restricted themselves to food that are full of gluten and dairy
Your child is almost entirely gluten and dairy based and his only fruit is banana which 90% of children on a gfcf diet cannot tolerate. So I would say doing the diet would help him. But you would have to change everything really and he will almost certainly go through withdrawal from that lot.

So - IM(very)HO it will take some adjustment but I suspect he would do well on the diet.

Marilyn Le Bretons book Diet Intervention and Autism is a good starting point.

i tend to agree with Pagwatch, it really doesnt HAVE to be under direction - you just need to be aware of ingredients in different formats.

We took out most of DS5's dairy before we got to the dietician as he was a very sicky baby and just kinda gave up bottles himself by around 10mths - just wouldnt touch them. He has had varying tummy troubles, alternating violent diarrhea and constipation. Some foods you could physically see his tummy contorting with cramps so we took out one food at a time until he seemed to have regular type nappies. The most awkward one was definately soy, as we didnt realise we were substituting one intolerance for another , but its sorted now. His gut is healing nicely and hes finally putting weight on (hes 3y and up until recently only weighed 22lb, hes 26lb now ).

The thing thats just occured to me is that there are thousands of toddlers/children who voluntarily put themselves on awful restricted diets (a slice of toast and 2 smarties a day) and the vast majority manage just fine on it. As adults we worry about what they are or are not eating - obviously getting medical advice is never a bad thing - but because we are aware of what we are feeding them we can compensate where necessary/possible.

For instance: rice milk, you can get with calcium, lots of GF are loaded with calories (its a side effect of using GF ingredients) so dont worry that they are not getting enough calories either. Really scrutinise EVERY label, shopping is horrendous for a while but it gets easier. You may well find that its just easier to cook fresh, and most GFCF foods are twice the price!

Eating out is a PITA - but Mcdonalds is fab, just avoid the bread bit, the fries are fine, but not nuggets/fish fingers/chicken sandwiches. Dont touch KFC with a bargepole, or Greggs/subway for that matter. Burger king is fine as long as you avoid the bread (again the fries are fine).

THere are obvious things to avoid: cake, buns, biscuits, pasties, pies, pastry, ice cream, cheese, bread, butter/marg, milk, yoghurt, fromage frais, noodles, pasta, lasagne, margerine,

The most awkward bits are the bits you wouldnt realise: coatings on chips, gravy/sauces, crisps, burgers, sausages, deli-meats, beans(some), juices(some), soups, margerine,

and things you wouldnt expect to be ok: turkish delight, marshmallow, gummy bears, sugar lollies (not chuppa chups), nesquik strawberry milkshake powder!

But once you've sussed what foods are safe it does get easier. And actually if you look at very safe foods: fresh fruit, vegetables, fresh meat, fresh fish, eggs, rice, smoothies, sorbets, etc its actually healthier foods than most people would (on average) eat! Its actually a very healthy diet

well in tesco today it was packed so i just got normal shop but not too much, then im going to work out exactly what i need and do a midweek online order i think and try and make stuff myself (probablyt poison the poor kid!!) will keep you all updated, thanks so much

We are just starting a GF diet today. We tried the CF last year and didn't see a marked difference. We did the urine analysis from Sunderland university recently which came back showing no abnormal results for casein but there was for gluten. Hence we are going to try only GF for a few months. Not sure how we will get on as DS1 doesn't really like to eat full stop but I figured I would always wonder if we didn't try it. We don't live in the UK and there isn't much available in the way of GF except bread, pasta and biscuits so I think its going to be hard but lets see.
Hope you get on all right
ellie

Have you read the research papers at Sunderland University?