GF/CF

[Lynden]

I haven't read too in depth into this as Logan has such a limited diet anyways, but I was wondering if there were any key factors that meant that the elimination diet might make a difference to an ASD child.

 

Lynne

[LizK]

Hello

 

Bear in mind I'm not an expert on this and others on here are much more knowledgable but DH knows someone who was involved in the original research done at Sunderland Uni. In her opinion children most likely to benefit are those with preexisting bowel problems (dairrhoea or constipation), those with a family history of food intoleracnes, those who have had recurrrent ear infections and those who have had lots of antibiotics in early childhood. There was another factor too but can't remember. It's not an exact science though and some children not in those categories seem to benefit and vice versa. You can get urine testing done by sending off for a testing kit from Sunderland Uni (?60 though ) which gives a indication if your child would benefit from removing gluten or casein fromt he diet.

 

Adam is on a virtually dairy free diet now and since then his poos ahve become more normal looking and his hyperactivity has lessened. Could be a coincidnece don't really know. We've also started giving him acidophilis supplements too. We never got round to doing the urine testing but because D is intolerant of cows milk protein and on a milfree diet it wasn't too difficult to put A on it. Not sure whether A has a partial cows milk protein intoerance like D or whether he has the 'leaky autistic' gut but whatever it seems to have helped

 

Am reading Mulitcolour Mayhem atm and her youngest child sees to have had a dramatic effect with the diet, was nonverbal and spent hours stimming before she introduced it.

 

Hope you are well. Will email you soon, just got to finish the blinking Parental Advice stuff for Adam's Statement

 

Liz x

[on the edge]

My opinion is that it is soooooooo worth trying the diet to see what happens to your child. But you have to do it v strictly or you will not get a real result.

 

There is evidence to suggest that if a child responds well to milk free diet then they will probably respond even better to gluten free too. (casein and gluten doing the same thing to a gut that is damaged) I have read a lot on the web regarding autism and the bowel connection and there seems to be a very big link!!!!! Even when there is not any evident signs such as dairrhoea or constipation.

 

I have put my son on this diet and the change in him has been amazing (especially after I removed soy- which I did not realise he was reacting to initially!!) I would recommend it to anyone..there is nothing to lose in trying the diet -it is obviously hard to begin with - but you soon get into the flow.

[Lynden]

Thanks Liz and On the Edge

 

Logan did have chronic constipation which has gotten better. He rarely ever has milk, never to drink and occasionally in cereals. His diet is probably mostly dairy free apart from chocolate. A friends husband has a gluten free diet though and it sounds like a nightmare!

 

I might do some reading and see if I think it could work for us.

 

Lynne x

[baddad]

Hi Lynne -

 

In my son's case there was a DEFINITE connection between dairy and constipation - problem resloved within days of going dairy free...

In all honesty, the GF diet is now fairly easy to maintain once you've learnt your way round the labels. I think it is probably harder for adults who have to start it than kids who evolve with it, and there is undoubtedly a knock on added bonus that the stuff it debarrs is generally far less healthy than the alternatives that you can eat... It really is VERY helpful for some kids, and i think it is always worth a six month trial to find out if yours is one of them. If it aint, you've lost nothing - if it IS........................

 

 

L&P

BD

[LizK]

We've not gone down the gluten-free diet line yet but it strikes me as harder to stick to than the casein free diet. Don't know if that's just because I'm used to dairy-free cooking due to me and DS2 not having any milk products. I seem to have found reasonably palatable dairy free alternatives for most things aside from cheese. DS1 eats quite a lot of bread and pasta and cereals. What edible alterantives are there? I tried gluten free bread a while ago, I thought it was foul and the boys spat it out in disgust!

 

Lx

[on the edge]

My son was a bread addict before the gfcf diet. He used to quite literally ask for it all day!! Now he has no more cravings for it - it doesn't get a mention - so I don't really bother with any alternatives as they are pretty poor tasting. We just dont do toast and sandwiches anymore. It really becomes so easy eventually.

 

I have also tried to eliminate yeast for a while. I occasionally buy a GFCF bread mix which is yeast free and make that in my bread machine (bought specially for his diet) That, hot with jam, is pretty tasty.

 

There is so much material to read in the web..and I have found so many that swear by the implementation of the GFCF diet as the preliminary step in healing the gut and the very first on the list of vital action.

 

Any best of luck to anyone thinking of doing it

[Lynden]

Thanks all - I'm going to do some reading into it - where can I find the best information on it? Is it something I should discuss with our paed or just go ahead and do myself?

 

Lynne x

[LizK]

Try this link for Sunderland Uni

 

http://osiris.sunderland.ac.uk/autism/

 

Think there is also some info on the NAS website

 

Probably worthwhile chatting to L's doctor about it but doens't mean you can't go ahead yourself anyway. We put Adam on a dairy-free diet and then presented it to our paed as a fait accompli! He was quite happy though and agreed that some children do benefit. A lady at Earlybird was actually recommended to have urine testing by her child's doctor. I think other specialists though are less aware of the issues with gf/cf diets

 

One thing to consider if you do go ahead is whether seeing a dietician would be useful especially as L is still quite little and if he doesn't have a big repetoire of foods anyway. We didn't as we've only restricted dairy plus I see the dietician regularly about D so have all the info about adequate calcium intake, dairy substitutes, recipes etc.

 

Lx

[Lynden]

Thanks Liz

 

We did see a dietician a wee while back but she couldn't give us much help then because he was purely refusing to eat. He does eat now thankfully but a limited range of foods. I'm going to do lots of reading and go to the GP armed. I think its one of those things that we can try and if it doesn't work so be it, but at least we've tried.

 

Lynne x

[lil_me]

We tried it for quite some time, made no difference to my son at all but he rarely has products containing gluten and casein anyway as he's such a fussy eater. He just ate even less, had no energy at all and was loosing weight drastically. With fussy eaters following my experience I would be very careful on making diet changes. I think it is always worth trying these things as a few parents find it extremely effective.

Edited February 18, 2006 by lil_me

[call me jaded]

Lynne

 

The refusing to eat is a sign to me that maybe there are some food intolerances and he's trying to avoid the discomfort that eating brings. Just a thought.

 

If you do go down this route be careful not to load up with soya, because after gluten and dairy, soya is number three on the list of intolerances.

[michbooth]

Hi

 

My son Callum has been on gf/cf diet for a year now. After 6 months we saw no improvement so had him fully tested for intolerances against all foods (we initially had the urine test done at Sunderland and he was intolerant to both gluten and casein)

 

After replacing the cows milk with soya and we were using sunflower spread/oil we found out in September that he was highly intolerant to these too. After excluding these we have seen an improvement since but after 5 months his dietician advised trying to reintroduce soya and sunflower as Callum was very short of calcium and other nutrients (he refused to take supplements)

 

He has been back on it for 2 weeks and his behaviour has rapidly declined and he has had red hot ears. The dietician said that a lot of tests for intolerances gave false positives and that the only way to check was to reintroduce them into the diet. Needless to say we will be removing them again after this bad reaction.

 

My experience over the last year says that there must be definitely something in the diet, especially seeing the reaction to the soya/sunflower over the last couple of weeks. It is very hard to find substitutes for the foods as he is also intolerant to eggs, which makes baking difficult. Also soya and sunflower are added to so many foods. We have found the best/cheapest approach is to serve Meat/rice/fruit/veg/potatoes with some homebaking. We use grapeseed oil/coconut oil for cooking and making him chips. The biggest problem is the calcium shortage! Even provamel rice milk has added sunflower oil. If anyone knows of a substitute for milk without soya/sunflower/casein with added calcium I would love to hear about it.

 

Good luck with the diet if you go ahead with it again

 

Michelle

[call me jaded]

Almond Milk and (I think) Tiger White are sunflower oil free. We discovered chufi nut drinks (Tiger White) in Spain, which is handy because they certainly don't do much in the way of rice milk.

 

I would get calcium in drops or powder from Kirkman (the Nutricentre is the UK supplier for an increasing range of their products, but they ship to the UK if not) and add it. I think the secret is to add it every single time, rather than get the daily dose in one hit.

 

We have an amazing cocktail which still just about qualifies as 'juice'.

[call me jaded]

michbooth

 

Who did your additional testing?

[michbooth]

Almond Milk and (I think) Tiger White are sunflower oil free. We discovered chufi nut drinks (Tiger White) in Spain, which is handy because they certainly don't do much in the way of rice milk.

 

I would get calcium in drops or powder from Kirkman (the Nutricentre is the UK supplier for an increasing range of their products, but they ship to the UK if not) and add it. I think the secret is to add it every single time, rather than get the daily dose in one hit.

 

We have an amazing cocktail which still just about qualifies as 'juice'.

 

Hi,

 

Thanks for the suggestions. I didn't even know that you could calcium in drops. It will certainly make life easier for Callum (and me!)

 

Yorktest did the additional testing. It was a blood test that you send back by mail, featured in several books (Patrick Holford - Optimum nutrition for the mind - he also did a feature on Tonight with Trevor Macdonald - regarding children suffering with ADHD (Callum has AS and mild ADHD)

 

The children on the TV programme were tested at Yorktest and after removal of things they were intolerant to there was a big improvement in their behaviour. The cost is ?250 which covers 113 different foods.

 

Callum's dietician is very sceptical about the tests, though Yorktest do have a very good reputation.

 

Will now do my order for Almond milk and calcium supps.

 

Thanks again

Michelle

[LindaB]

My daughter is intolerant to cows milk and soya. I get Oatly oat drink plus which has added calcium. It does contain rapeseed oil. I have to order it from my local chemist. You can get the non-added calcium type from Sainsburys, Holland and Barret and Tesco. Unfortunately the one with the added calcium is ?1.69 a litre so it is expensive especially as my daughter gets through about 6 litres a week. Your GP should be able to give the calcium drops.

Edited March 3, 2006 by LindaB

[ann11]

We've not gone down the gluten-free diet line yet but it strikes me as harder to stick to than the casein free diet. Don't know if that's just because I'm used to dairy-free cooking due to me and DS2 not having any milk products. I seem to have found reasonably palatable dairy free alternatives for most things aside from cheese. DS1 eats quite a lot of bread and pasta and cereals. What edible alterantives are there? I tried gluten free bread a while ago, I thought it was foul and the boys spat it out in disgust!

 

Lx

 

Best bread mix I have found is Easy Bakers and it is very good lovely stuff. A real discovery when I came across it. I found it in my local cooking shop. It is imported from Australia by Euro Fine Foods 2000 High St Uffington OXON SN7 7RP.

 

It has 4 separate sealed bread mixes so 4 loaves of bread can be made (easy in a bread maker). It cost me just over ?5. The makers of the mix are Laucke Flour Mills 2 Callington Rd, STRATHALBYN , S. Australia

www.laucke.com.au info from: bread@laucke.co.au

 

There is a great recipie book you can send away for on the back of the Doves brand of gluten free flour that makes a great savoury bread with tomatoes in it. Other wise the stuff is not so good.. There are gluten free and milk free books in the library. If short of cash just photocopy the ones you want and put in to a folder. I never use all the recipies so buying a whole book is pointless as I hardly eat meat.

 

 

Porridge in the morning Use Millet flakes and Rice Flakes can put some quinoa flakes in too add soya milk , salt or sugar/syrup/etc to taste and at the end chopped bannana. Or add at the beginning of cooking dried fruit.. Realy lovely.

 

The flakes may often be found in healthfood stores or small foreign type stores that are independant are the best .. Just search your local town/city. Ask them to stock it for you.

 

These flakes make many different dishes sweet or savory. Buckwheat pasta/ noodles can easily be made for freezing on a day at home. then these things can be pulled out of the freezer and you can eat quickly.

 

Its not so hard once youve established what you like and have found some nice recipies and sourced some alternatives.

 

There is a soya cheese I like it good on top of spag bog or mixed in with rice stirfry.

 

That may help may not?

[LizK]

Best bread mix I have found is Easy Bakers and it is very good lovely stuff. A real discovery when I came across it. I found it in my local cooking shop. It is imported from Australia by Euro Fine Foods 2000 High St Uffington OXON SN7 7RP.

 

It has 4 separate sealed bread mixes so 4 loaves of bread can be made (easy in a bread maker). It cost me just over ?5. The makers of the mix are Laucke Flour Mills 2 Callington Rd, STRATHALBYN , S. Australia

www.laucke.com.au info from: bread@laucke.co.au

 

There is a great recipie book you can send away for on the back of the Doves brand of gluten free flour that makes a great savoury bread with tomatoes in it. Other wise the stuff is not so good.. There are gluten free and milk free books in the library. If short of cash just photocopy the ones you want and put in to a folder. I never use all the recipies so buying a whole book is pointless as I hardly eat meat.

 

Thanks Ann. That's very helpful.

 

We ended up doing the Sunderland test and although his biggest spike was IAG (?) they thought the others were metabolites from medication he was on and suggested we try gluten free diet. Also showed riased levels of caseinomorph peptides too.

 

Stil procrastinating about the gluten though discovered our big Tescos has a good range on gluten free products and DS seems to like the pancakes.

 

Lx