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#1 trance

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Posted 11 July 2006 - 10:57 AM

Hi folks
Sorry if this has been asked before.
My son has food intolerances to artificial colours and msg. I also miss out aspartame as read that its associated with msg.
I have done this myself by missing out certain foods etc..

I was wondering if i am missing any other general food additive which can cause food intolerances or a product that is misleading i.e I was told minstrels had colourings in them which you would never think about.

Sorry if the post is a bit vague but i am sure you clever people get the jist.
thank you all
xx

Edited by trance, 11 July 2006 - 10:57 AM.


#2 on the edge

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Posted 15 July 2006 - 03:15 PM

This website is very informative. If you look under the factsheets you will find heaps of info- including hidden msgs, how labelling can be deceptive - such as Hydrolysed vegetable protein

http://www.fedupwith...additives.info/

Good luck!

#3 Guest_hallyscomet_*

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Posted 08 August 2006 - 12:26 PM

Hi Trance,

I have read Sue Dengates books, from the link above, she was recommended by the Autism Assoc. in Australia and the book I found really helpful was 'Different Kids'

Here are some other links worth looking at also. smile.gif

http://www.gfcfdiet.com/ Gluten free Casein free - where it all started.

http://www.phosadd.com/foods/listA.htm LIST of Additives by number with suspect ingredients (338 , 450 etc)

http://www.phosadd.com/ The ABC of Dietary Management for ADD ADHD

H.

#4 Lynden

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Posted 24 September 2006 - 05:10 AM

Can your dietician/GP do these tests or do you have to go through Sunderland/York etc?

Probably a daft question I know but I dont know - and I know some of you will tongue.gif

Lynne x

#5 LizK

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Posted 24 September 2006 - 12:22 PM

Depends in what respect you mean whether you mean a) conventional medical understanding of food intolerances ie dairy intolerance or coeliacs or cool.gif the ASD leaky bowel opioid excess theory of casein/gluten intolerances which is still seen by many on the fringes of medicine?

The latter is only done privately by Sunderland Uni by testing a urine sample. They look at various metabolites of casein and gluten in the urine to see if they have raised levels of opioid peptides. I've never heard of this being funded by or performed on the NHS. A paediatrician can do blood tests to see to check for markers of coeliacs disease (gluten intolerance) or milk allergy but there is no blood or urine test to check for dairy intolerance, it's a matter of excluding it from the diet and seeing if the symptoms improve. According to the Sunderland info there is a link between children with conventional coeliacs or diary intolerance and raised peptides

Adam has conventional dairy intolerance - colic as a baby, bloated tummy, sloppy poos, anaemia (Daniel has it too but was picked up much earlier as his is more severe). He has had the blood test for coeliac which was normal. When we sent the Sunderland Urine sample it came back showing high levels of casein opioid peptides and borderline levels with gluten. He is now casein free and we are seeing a dietician next week with a view to going gluten free. Apparently it is good practice to have blood tests done for coeliacs before embarking on the gluten free diet but that's already been done.

This whole area is quite confusing. Went to a talk a while back by a paediatrician who was a so-called ASD expert who was asked about the dietary issues. He just talked about coeliacs disease and allergies and didn't seem to know anything about the Sunderland Uni research or that it was different to what he was talking about huh.gif . Various members of the audience were more informed than he was!

Lx

#6 Lynden

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Posted 24 September 2006 - 12:59 PM

Thanks Liz

The OT on the Early Bird was very sceptical about the guy in Sunderland because he doesn't actually work for Sunderland Uni, just rents a room there. One lady on the EB had the York Tests done.

Lynne x

#7 bid

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Posted 24 September 2006 - 07:00 PM

I have two children with 'true' food allergies. They go yearly to a specialist allergy clinic, and have skin prick tests, and more rarely blood tests.

The skin prick tests involve a tiny amount of the suspected or known allergan being scratched into the skin on the inside of the arm, together with a 'control' test of water. With an allergy, the skin around that skin prick reacts with a white raised lump surrounded by redness. This is measured and the larger the reaction, the greater the allergy.

The blood tests appear to be used when the skin pricks to a substance are getting less each time. I can't for the life of me remember what the blood test measures, but if the reading comes back below a certain level, then a food challenge is tried in hospital.

I think it's harder to test for intolerances, as they don't have the sort of dramatic, immediately visible reaction that allergies produce.

We were also told by our children's consultant that the blood tests that are available from some firms testing for food intolerances are very unreliable. Don't know myself, as we have always gone through the hospital.

Good luck...I know food intolerance can be awful, because my youngest had severe intolerance to a couple of foods as well as his allergies when he was a baby, and it was a nightmare convincing our local paed. it wasn't all in my mind sad.gif It was only when he was sent to Great Ormond Street that he got any help for his bowel probs.

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#8 LizK

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Posted 24 September 2006 - 07:57 PM

QUOTE (Lynden @ Sep 24 2006, 01:59 PM) <{POST_SNAPBACK}>
Thanks Liz

The OT on the Early Bird was very sceptical about the guy in Sunderland because he doesn't actually work for Sunderland Uni, just rents a room there. One lady on the EB had the York Tests done.

Lynne x


Really? Didn't realise that! He's on the Sunderland Uni website though so would have thought he would have some affiliation to the University. Never heard of the York tests either, are they measuring the same thing? Is it cheaper laughing.gif?

Lx

#9 Ohforaquietlife

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Posted 24 September 2006 - 08:31 PM

QUOTE (Lynden @ Sep 24 2006, 01:59 PM) <{POST_SNAPBACK}>
Thanks Liz

The OT on the Early Bird was very sceptical about the guy in Sunderland because he doesn't actually work for Sunderland Uni, just rents a room there. One lady on the EB had the York Tests done.

Lynne x

I'm guessing 'the Sunderland guy' that you refer to has the initials PS laughing.gif Not sure if I'm allowed to name him but complete the name Mods if I am smile.gif I've met him on several occasions and have been lucky enough to attend a couple of his lectures. He's a very genuine kind of chap and he talks a lot of sense. His work seems to be very well known and he is a recognised expert in the field of dietary intervention and ASD around the world. It doesn't surprise me that your OT is sceptical. Most 'professionals' that work for the NHS will not acknowledge anything other than the usual accepted practices but there is a lot in what the Sunderland team are working on. Just ask anyone who has had a serious go at the gluten/casein-free diet. It has made a significant difference to many - including my own son. His teachers and our NHS Dietician now believe in it. I wonder what actual experience this OT has in this particular intervention?

Ohf!

#10 LizK

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Posted 24 September 2006 - 10:09 PM

QUOTE (Ohforaquietlife @ Sep 24 2006, 09:31 PM) <{POST_SNAPBACK}>
I'm guessing 'the Sunderland guy' that you refer to has the initials PS laughing.gif Not sure if I'm allowed to name him but complete the name Mods if I am smile.gif I've met him on several occasions and have been lucky enough to attend a couple of his lectures. He's a very genuine kind of chap and he talks a lot of sense. His work seems to be very well known and he is a recognised expert in the field of dietary intervention and ASD around the world. It doesn't surprise me that your OT is sceptical. Most 'professionals' that work for the NHS will not acknowledge anything other than the usual accepted practices but there is a lot in what the Sunderland team are working on. Just ask anyone who has had a serious go at the gluten/casein-free diet. It has made a significant difference to many - including my own son. His teachers and our NHS Dietician now believe in it. I wonder what actual experience this OT has in this particular intervention?

Ohf!


I think it is gradually becoming more mainstream slowly. The dietician of the gastroenterologist my youngest NT son sees is very knowledgable and supportive of the GF/CF diets for ASD and has several families on her books where it has made a big difference. We are seeing her with my eldest son next week as a result! Our paed too has been supportive and thought it was worth doing and I know the CAMHs ASD chap tells his patients about the Sunderland test and lets them make their own mind up. Sadly it's not across the board though and other professionals have treated it like quackery.

Lx

#11 Lynden

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Posted 25 September 2006 - 08:30 AM

QUOTE (Ohforaquietlife @ Sep 24 2006, 09:31 PM) <{POST_SNAPBACK}>
I'm guessing 'the Sunderland guy' that you refer to has the initials PS laughing.gif Not sure if I'm allowed to name him but complete the name Mods if I am smile.gif I've met him on several occasions and have been lucky enough to attend a couple of his lectures. He's a very genuine kind of chap and he talks a lot of sense. His work seems to be very well known and he is a recognised expert in the field of dietary intervention and ASD around the world. It doesn't surprise me that your OT is sceptical. Most 'professionals' that work for the NHS will not acknowledge anything other than the usual accepted practices but there is a lot in what the Sunderland team are working on. Just ask anyone who has had a serious go at the gluten/casein-free diet. It has made a significant difference to many - including my own son. His teachers and our NHS Dietician now believe in it. I wonder what actual experience this OT has in this particular intervention?

Ohf!


I'm not sure of his name hence 'sunderland guy' LOL I dont know much about it yet to be honest, other than my OT was sceptical.

She is a very open minded OT and does fully back gf/cf and many other alternative interventions - she just said she thought people were misled because he has a room in the Uni. If I do have Logan tested though probabaly I will do it through Sunderland because of he views of people here.

Liz York test for everything and cost ?250 I think so definitely not cheaper no LOL

Lynne

#12 LizK

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Posted 25 September 2006 - 12:43 PM

QUOTE (Lynden @ Sep 25 2006, 09:30 AM) <{POST_SNAPBACK}>
I'm not sure of his name hence 'sunderland guy' LOL I dont know much about it yet to be honest, other than my OT was sceptical.

She is a very open minded OT and does fully back gf/cf and many other alternative interventions - she just said she thought people were misled because he has a room in the Uni. If I do have Logan tested though probabaly I will do it through Sunderland because of he views of people here.

Liz York test for everything and cost ?250 I think so definitely not cheaper no LOL

Lynne


I've just googled it and found it! On the website I found the Yorktest looks like a completely different kettle of fish and couldn't find any research linking it with the opioid peptide theory or ASD though possibly didn't look hard enough. It wasn't clear what chemicals they were looking for either or how or whether it was testing for conventional intolerances or not or how commercial a venture it is? There is a lot of research backing the Sunderland urine testing, some of it equivocal others seemed more positive. The methodology used is fairly standard techniques and they are testing for specific compounds and afaik there is not commercial interest. I'm ever the sceptic though laughing.gif

Lx

#13 MichelleW

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Posted 12 November 2006 - 09:44 PM

I've just been to a lecture by PS of Sunderland University. I had previously seen the website, but actually meeting him in person was very useful. His work makes a lot of sense, but from my experience, NHS paeds don't seem to want to look into alternatives.

My son was intolerant to baby formula but was fine on soya, but when I introduced cows milk at a year old, his projectile vomiting didn't reappear, so I thought he was fine. But at some point I became aware of his severe constipation. I realised he was autistic by the time he was 2, but he wasn't diagnosed until he was 4, and has been seeing a consultant about his bowel problem, but not his autism. I see a different consultant each time I go every 6 months, and there answer is "it's his autism" and the "solution" is laxatives which don't work well. When I suggested a dairy free diet - they agreed it was "worth a go" so I tried it for 9 months, then I tried a gluten free diet for 3 months, but put J back on dairy products. The consultants weren't so positive about the gluten free diet.

The work at Sunderland suggests that the diet may need to be both dairy and gluten free for at least a year before results may be seen. So I'm about to send of for a urine test before I embark on a gluten and dairy free diet. If the initial urine results show the "suspect" peaks, I'll keep J on the diet for a year, then have another urine test done to see if there is a change.

Has anyone actually had a follow up urine test done, and were the results positive?

#14 Nic m

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Posted 13 November 2006 - 12:53 AM

Hi,

It was thanks to my very helpful dentist that my daughters allergy to sodium benzoate was picked up she was constanly run down and had lots of other symptoms but i just put it down to her bowels. My sister has coeliac and i asked the doctor and consultant and the professor if there was a chance my daughter could have this as her symptoms were similar to my sisters and her health was deteriorating the way my sisters was before her diagnosis.They all said no but didnt suggest the symptoms suggested an allergy to anything else! My dentist was worries about the amount of mouth ulcers my dd was getting and referred her to our local dental hospital.She had patch testing on her skin and the results were enough on this for the SB and we are going back for blood tests to confirm an allergy to cocoa (result wasnt as clear) I was amazed at the difference to my dd's health and had to get all her medicine changed to benzoate free meds (this has been the most difficult thing to alter but we are getting there with a very helpful chemist) The impact is so great that even my daughter doesnt wish to eat the treats that her gran continues to offer her!
Nicola

#15 baddad

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Posted 14 November 2006 - 12:17 AM

Hi all -

Just a quickie 'cos it's late...

Most of the people i know who have had the tests done at Sunderland Uni (it's Paul shattock btw, and he's been mentioned here loads of times!), had the peaks id'd and then used the diets consistently have found them extremely helpful - self (well, Ben!) included....
Most times when I've heard of 'failures' it's either been when parents have just undertaken the diets without testing, or have not done them consistently (more often than not, both!).
TBH I'm a bit dubious about SOME of the claims of certain high profile 'lobby groups' - stuff like intolerance to miniscule traces and the ever increasing lists of 'banned' substances (bear in mind that every new 'banned substance' implies a compromised diet up to the point of discovery of the new banned substance and the implications of the 'trace element' theory on the degree of compromise!) - but i try to keep an open mind that different children may be effected differently. What i can say, is that there is more and more evidence from the GENERAL sector to indicate that food intolerances are far more widely spread and far more problematic than was ever suspected a few years ago, and increasing evidence of gut abnormalities to imply a greater incidence of problematic reactions in children with ASD's... other than that, all I can add is that ben's constipation/projectile vomiting was proven to be dairy intolerance, and that the changes in behaviour associated with the removal of gluten from his diet were enough to convince me; my GP AND the consultant Paed involved of a positive benefit...

Hope that helps

L&P

BD


PS:

BTW on venturing into Sainsbury's the other day (don't usually shop there) I discovered they have expanded their Free From range dramatically thumbup.gif thumbup.gif thumbup.gif As their making a big thing of getting rid of Hydrogenated fats as well it's gotta be good news all round. biggrin.gif

#16 Karen A

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Posted 14 November 2006 - 09:17 AM

QUOTE (baddad @ Nov 14 2006, 12:17 AM) <{POST_SNAPBACK}>
Hi all -

Just a quickie 'cos it's late...

Most of the people i know who have had the tests done at Sunderland Uni (it's Paul shattock btw, and he's been mentioned here loads of times!), had the peaks id'd and then used the diets consistently have found them extremely helpful - self (well, Ben!) included....
Most times when I've heard of 'failures' it's either been when parents have just undertaken the diets without testing, or have not done them consistently (more often than not, both!).
TBH I'm a bit dubious about SOME of the claims of certain high profile 'lobby groups' - stuff like intolerance to miniscule traces and the ever increasing lists of 'banned' substances (bear in mind that every new 'banned substance' implies a compromised diet up to the point of discovery of the new banned substance and the implications of the 'trace element' theory on the degree of compromise!) - but i try to keep an open mind that different children may be effected differently. What i can say, is that there is more and more evidence from the GENERAL sector to indicate that food intolerances are far more widely spread and far more problematic than was ever suspected a few years ago, and increasing evidence of gut abnormalities to imply a greater incidence of problematic reactions in children with ASD's... other than that, all I can add is that ben's constipation/projectile vomiting was proven to be dairy intolerance, and that the changes in behaviour associated with the removal of gluten from his diet were enough to convince me; my GP AND the consultant Paed involved of a positive benefit...

Hope that helps

L&P

BD
PS:

BTW on venturing into Sainsbury's the other day (don't usually shop there) I discovered they have expanded their Free From range dramatically thumbup.gif thumbup.gif thumbup.gif As their making a big thing of getting rid of Hydrogenated fats as well it's gotta be good news all round. biggrin.gif




Hi Yes I have noticed the improved range of Free From foods too.A few years ago a friend who has a son on the autistic spectrum was using a gluten free and dairy free diet for a while.The range of foods available was very limited,a lot of the products tasted less than wonderful and prices were high.She ended up making most things from scratch.I have a bit of a personal interest in nutrition and diets.I have noticed that there is so much more available in the supermarkets now.I think it is a great spin off for people here which comes from an increased demand among the general public-probably helped also by various TVprogrammes and authors. biggrin.gif biggrin.gif Karen

#17 MichelleW

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Posted 14 November 2006 - 05:29 PM

I didn't realise we could name Paul Shattock, or anyone else on this site. I've just starting looking at gluten free alternatives and was quite suprised - the range is much better than the last time I looked a few years ago. I tried the Sainsbury gluten free pasta, and J loved it - I haven't actually started him on the diet - just wanted to see how he would react to me changing his pasta and it went much better than I expected. So, I'm going to slowly change one thing at a time.

#18 KarenT

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Posted 15 November 2006 - 02:00 PM

That's how I did it Michelle. I gradually tested out a range of foods over a few months so that I had a complete repertoire to introduce on the day we finally switched. It meant that I made fewer mistakes than I would have if I'd gone in at the deep end, I'm sure.

It hasn't made a bit of difference to J though. He's still off the map. tearful.gif But still, will give it some more time. I'm nothing if not committed!

Karen
x

#19 smiley

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Posted 15 November 2006 - 02:48 PM

Hi all smile.gif

Anyone know of any good GF/CF websites? I've googled - but there's sooooo many, my heads spinning.

Ta x

#20 oxgirl

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Posted 05 January 2007 - 04:21 PM

Just wondered if anyone knew anything about food intolerances and their effects.

My lad doesn't really fit into the category of needing a gluten/casein-free diet, he doesn't suffer with gut problems really, apart from constipation every now and again, but I've been thinking for a long time that some of his problems could be down to food intolerances.

He's very underweight and small, is deathly pale all the time, is always tired, gets lots of tummy aches, lacks energy, dark circles under his eyes and red ears and gets loads of headaches (takes a preventative migraine med, but still needs Calpol most days as well!).

Does anyone else know if these symptoms could be down to intolerances or has anyone experienced similar. Trouble is, he's such a fussy eater, it'd be really difficult to introduce a new diet, which is why I've always been daunted by the idea previously.

Any advice would be appreciated. hug.gif

Cheers.

~ Mel ~

#21 Deedee

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Posted 12 January 2007 - 08:40 AM

When we started down the route of food intolerances I did a food diary first.My boy had the 'red ear' which was always linked to his meltdowns so we started to record everything that he ate or drank and pinpointed from there which foods made him kick off.He was also and still is very self restricting on what he eats,it drives me mad! At one time it was milkshakes,cheerios,dry bread and choccie chip cookies!! It takes such a long time to introduce new food as he has a real problem with different textures and often gags on things but its definately working by taking out the casein we found his speech improved and the gluten affects the tantrums.I don't know how or why it all works differently with different kids but we have had some really positive results with our dabblings with his diet.The biggest change was when we put him on eyeq.I call this his magic potion..wether its the evening primrose oil (which also helps PMT so it must have some sort of calming effect)I don't know but it definately helps him with the rages.
There is a great book by Lisa Lewis called Special Diets for Special Kids which explains more about how it works.I can also recommend the one by Marilyn le Breton The AIA cookbook.It has stacks of recipes in it as well as more info about it all.HTH biggrin.gif

#22 oxgirl

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Posted 12 January 2007 - 10:08 AM

QUOTE (Deedee @ Jan 12 2007, 08:40 AM) <{POST_SNAPBACK}>
When we started down the route of food intolerances I did a food diary first.My boy had the 'red ear' which was always linked to his meltdowns so we started to record everything that he ate or drank and pinpointed from there which foods made him kick off.He was also and still is very self restricting on what he eats,it drives me mad! At one time it was milkshakes,cheerios,dry bread and choccie chip cookies!! It takes such a long time to introduce new food as he has a real problem with different textures and often gags on things but its definately working by taking out the casein we found his speech improved and the gluten affects the tantrums.I don't know how or why it all works differently with different kids but we have had some really positive results with our dabblings with his diet.The biggest change was when we put him on eyeq.I call this his magic potion..wether its the evening primrose oil (which also helps PMT so it must have some sort of calming effect)I don't know but it definately helps him with the rages.
There is a great book by Lisa Lewis called Special Diets for Special Kids which explains more about how it works.I can also recommend the one by Marilyn le Breton The AIA cookbook.It has stacks of recipes in it as well as more info about it all.HTH biggrin.gif



Thanks a lot for the reply Deedee. biggrin.gif My lad is the same as yours, very self-restricting, so it feels like a bit of a minefield starting out on this course. I think I remember reading somewhere how kids will crave the foods that they are intolerant too, or something like that, almost like an addiction. My lad loves all things bready, any kind of doughy, wheaty food, so I often wonder if it's doing him any good.
Cheers. hug.gif

~ Mel ~

#23 JsMum

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Posted 14 January 2007 - 03:43 PM

There is nothing stopping you getting your child tested, some clinics offer it under the NHS but there is cheaper ways now with chemists now doing some testings.

your son does sound like he is having a intolerance to something, with J cheese is a no no and has had him very very ill.

J sees a dietition and doesnt want him try and cut out foods such as diary because he has severe sensory difficulties to taste and texture so we dont want to put that into more a serious problem.

I would look into some testing and see what it could be that is causing your son so many physical symtoms.

There is supportive organisations that offer very good info and advice and support for migraine sufferers with specialist clinics around the country so do google it especially in children.

Has he had his bloods tested to get a picture how his iron levels are and his thyroid?

They may be normal but its worth a test especially as his meds are now not helping him and needing calpol.

Anyway just suggesting maybe it may be worth having a food intolerance test done.

JsMum

#24 MichelleW

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Posted 14 January 2007 - 04:21 PM

Sunderland University Autism research

hopefully this link will work. You can get a booklet about their research into diet and Autism, which explains it more thoroughly than the website

#25 oxgirl

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Posted 14 January 2007 - 07:16 PM

Thanks JsMum and MichelleW for your replies. Think I'll look into getting some tests done at a chemist or something as a starting point and go on from there.
JsMum, he did have blood tests and he isn't anaemic or anything like that, just weedy I think! tongue.gif
Cheers for the link, MichelleW.

~ Mel ~

Edited by oxgirl, 14 January 2007 - 07:17 PM.


#26 dooday24

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Posted 22 January 2007 - 09:30 PM

all the things u describe r wat the psychologist asked me today and recce suffers from these things as well and he thinks reece might benefit from a wheat free dairy free diet but as his diet is so bad cant do anything at this moment in time but maybe in the future hope this helps mel love donnax

#27 Deedee

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Posted 22 January 2007 - 11:55 PM

Finally got The Kid friendly ADHD and Autism Cookbook today..had it on order since end of november!
I've only just started reading it and unfortunately it seems very american (no offense meant!!!! biggrin.gif ) just that a lot of the ingredients/suppliers are only found in the US.That said its still a very good read and explains the diet well and it not too sciencey terms blink.gif Another useful addition to my groaning bookshelves..

#28 oxgirl

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Posted 23 January 2007 - 09:33 AM

QUOTE (dooday24 @ Jan 22 2007, 09:30 PM) <{POST_SNAPBACK}>
all the things u describe r wat the psychologist asked me today and recce suffers from these things as well and he thinks reece might benefit from a wheat free dairy free diet but as his diet is so bad cant do anything at this moment in time but maybe in the future hope this helps mel love donnax



Cheers, donna. Yes, the consultant said that to us many years ago and it's something I've thought about for a long, long time. Like reece, though, Jay's diet was so restricted the thought of trying a wheat and dairy free diet was just too daunting. It's a bit easier now though, as he's that much older. His diet is still very restricted, but I think he could have a go a bit less reluctantly now.

~ Mel ~

#29 oxgirl

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Posted 23 January 2007 - 09:34 AM

QUOTE (Deedee @ Jan 22 2007, 11:55 PM) <{POST_SNAPBACK}>
Finally got The Kid friendly ADHD and Autism Cookbook today..had it on order since end of november!
I've only just started reading it and unfortunately it seems very american (no offense meant!!!! biggrin.gif ) just that a lot of the ingredients/suppliers are only found in the US.That said its still a very good read and explains the diet well and it not too sciencey terms blink.gif Another useful addition to my groaning bookshelves..



Sounds useful. As long as I can find out how to make sausage rolls, I think we'll be okay!! laughing.gif

~ Mel ~

#30 ksasnic

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Posted 24 March 2007 - 02:40 AM

Oh golly.. Nick saw the consultant paediatrician on wednesday for the first time in ages.. The old paed had retired and wow what a meeting.. she actually knew what she was talking about.. even suspected herself of being aspie !!! anyway upshot was after going through a very detailed questionaire she said she would definately say he was aspergers... hallelulia another bod who says the same thing.... she said she would re-referr him to the cahms again as her word alone won't stand for anthing (had so many bods say he is surely that would !!!).. she asked who Nick saw last time so I told her and she groaned and said but he's not a proper ... he is just a bog standard psychologist and doesn't have a clue about aspergers !!!!! couldn't believe it lol my thoughts exactly...

Anyway the upshot was that she wanted Nick to try the gf/cf diet... he already takes omega 3 capsules which are brilliant - his memory is loads better - still bad but in comparrisson heaps better..

looking around for any info on this diet is very daunting.. let alone very expensive.. saw pitta bread pockets 5 pack for ?2.97 !!!!! ohmy.gif ohmy.gif

have yet to look at our tescos but so far morrisons have 2 very small shelves of stuff and so has our asda.. so am very disappointed... will endeavour to make as much as I can..

can anyone tell me whether eggs are allowed on this diet as unsure some sites say yes and others no so ????? if not what do we use instead ? is it back to war times and powdered egg lol

anyway off to bed now...

#31 bid

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Posted 17 March 2008 - 06:20 PM

Here:

http://news.bbc.co.u...lth/7300327.stm

Looks like a well-respected research team unsure.gif

Bid

(Some interesting links to the right of the article)

Edited by bid, 17 March 2008 - 06:22 PM.


#32 florrie

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Posted 19 March 2008 - 07:11 AM

Well peptides are found in the blood stream of many people with autism although people other than autistic ones can get peptides due to allergies to foods such as wheat and milk, I know I'm allergic and have increased peptides when eating these foods a I've been tested and they reduce when I don't eat them so that is proof to me that something is going on with leaky gut, I'm not sure think they cause autism on there own however, and if people say they got a complete recovery from cutting these things out, they may have just severely been allergic which gave them symptoms of autism but were not actually autistic in the first place. Cutting them out though does help if you are allergic

Anyway that is just my thoughts

Edited by florrie, 19 March 2008 - 07:14 AM.


#33 julie-2

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Posted 09 September 2008 - 08:04 PM

Hello All

Just wondered whether anyone else has a child with an intolerance to dairy, and how they have gone about taking dairy out of their diet completely, and how difficult it was for them.

After having blood tests carried out in Turkey last week (where my partner is from) they found that there was 3 x he normal mount of protein in her blood than normal and suggested we cut out dairy completely. He also mentioned that we should see a big change in her behaviour ie it should calm down a lot. Not sure wht to think about that one as she as diagnosed with asd 4 year ago, and with epilepsy around the same time.

Also has anyone heard of PKU (phenylketonuria) not sure if spelt corectly, as this was suggested to me by someone, and seems to relate to a lot of the symptoms my daughter has ie the behaviour problems, epilepsy etc, although thr doctor did n ot mention this in Turkey.

Any advice would be great.

Julie rolleyes.gif

#34 Tally

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Posted 09 September 2008 - 09:48 PM

Do you mean protein generally, or the milk protein, called casein?

Gluten and casein are thought to be common problems in autism and many people see positive results from cutting them out of the diet. I am an adult with Asperger's, and I recently tried it myself and found benefits to cutting out dairy - none really autism related though. I have ME and depression, and cutting out dairy has helped with both conditions. I have found that I can eat small amounts with no problem, and I "cheat" sometimes, especially when I am away from home.

Cutting out dairy has been difficult as I enjoy dairy products so much. Soya milk really does not taste like milk at all, it is a completely different product. It is nice with chocolate powder added, but I cannot eat it on cereal. Soya yoghurts are actually very nice. I miss cheese a lot. Dairy free cheese is really unpleasant. Everyone is different though, and your daughter might like the taste. Any kind of restricted diet means reading labels on everything and cooking from scratch a lot more, but it becomes second nature after a while. Introducing new foods to a person with autism can be difficult. If you decide to try it, involve her in the preparation as much as possible. This will allow her to feel more in control of what she is eating, and more likely to try it.

With intolerances, the only way to be sure is to try it. I have been really surprised at the results.

I don't really know anything about PKU, are there clear-cut tests that could diagnose it? If it seems likely, it would be worth checking. There are many reasons why the doctor in Turkey didn't mention it. He may not have been looking for it.

Edited by Tally, 09 September 2008 - 09:50 PM.


#35 julie-2

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Posted 10 September 2008 - 12:24 PM

QUOTE (Tally @ Sep 9 2008, 10:48 PM) <{POST_SNAPBACK}>
Do you mean protein generally, or the milk protein, called casein?

Gluten and casein are thought to be common problems in autism and many people see positive results from cutting them out of the diet. I am an adult with Asperger's, and I recently tried it myself and found benefits to cutting out dairy - none really autism related though. I have ME and depression, and cutting out dairy has helped with both conditions. I have found that I can eat small amounts with no problem, and I "cheat" sometimes, especially when I am away from home.

Cutting out dairy has been difficult as I enjoy dairy products so much. Soya milk really does not taste like milk at all, it is a completely different product. It is nice with chocolate powder added, but I cannot eat it on cereal. Soya yoghurts are actually very nice. I miss cheese a lot. Dairy free cheese is really unpleasant. Everyone is different though, and your daughter might like the taste. Any kind of restricted diet means reading labels on everything and cooking from scratch a lot more, but it becomes second nature after a while. Introducing new foods to a person with autism can be difficult. If you decide to try it, involve her in the preparation as much as possible. This will allow her to feel more in control of what she is eating, and more likely to try it.

With intolerances, the only way to be sure is to try it. I have been really surprised at the results.

I don't really know anything about PKU, are there clear-cut tests that could diagnose it? If it seems likely, it would be worth checking. There are many reasons why the doctor in Turkey didn't mention it. He may not have been looking for it.


#36 julie-2

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Posted 10 September 2008 - 12:33 PM

Hi Tally


As far as I know the doctor never mentioned the word casein or gluten. All he suggested was to cut out everthing with dairy in it, and stressed it would be difficult diet to follow, but would be very beneficial to my daughter.

I'm finding it quite difficult shopping wise, as its really time consuming having to read every label to make sure there is no dairy in what i'm buying. I have been making a lot of soups with fresh vegetables and pasta dishes, but there's only so many thinks I can think of. Shall have to look up some recipes on dairy free websites.

I looked at the free from ranges and they have a good selection of chocolate bars, cakes etc, although i'm finding it very difficult to buy a birthday cake for Sian which is at the end of this month, they only seem to do the fruit cake kind in the free from range.

thanks again for the advice

Julie

#37 Tally

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Posted 10 September 2008 - 01:12 PM

Hi Julie,

Any restricted diet will be difficult to begin with, but you will get used to what products you can and can't buy after a while.

You could always try making your own cake. Substitute butter for baking margarine. Most supermarkets' baking margarine is oil-based and dairy-free, and also results in a lighter cake than butter.

I would recommend looking up some recipes on dairy allergy websites, or vegan websites. You can add soya cream to make creamy soups. Soya milk can be used to make white sauces - instead of cheese, you could add garlic or mustard to flavour it. You will get better at it once you get used to it smile.gif

#38 aro

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Posted 10 September 2008 - 09:25 PM

I've just googled PKU and apparently the standard Guthrie test performed on newborns detects PKU. If you child was born here then it's unlikely (if the info is correct) that they have PKU.

A x

#39 julie-2

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Posted 11 September 2008 - 07:49 AM

Thanks again Tally for the useful information, have found a good website with some quite good recipes for cakes, main dishes etc, shall attempt their chocolate cake for my daughter's birthday the end of this month. thumbup.gif

And thanks Aro for that information, it was something my daughter's school mentioned as soon as I mentioned the protein intolerance, and after reading about PKU sort of freaked me out, like you say I do remember her having the Guthrie test over here, so if theyhad found anything I would have known about it.

Thanks again thumbup.gif

Julie

#40 Sooze2

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Posted 11 September 2008 - 11:53 AM

Hiya

My daughters are milk protein intolerant and we don't find the diet too bad now. Everything is labeled these days and so its fairly easy to shop. The free from range of bicuits etc is good but the food itself is not really that nice however you will find that the cheaper bisuits often don't have any milk or whey powers etc in them. Bourbons, hobnobs, cheep jaffa cakes and lidl dark chocolate digestives don't have milk in them and there are loads more. Lots of soups contain milk but Big Soup don't and they love them. Our diet is very good and we don't really miss the white sauces etc, cheese is something they do miss though but they love the dairy free cheese and you can buy "melting cheese" too for putting on pizzas - it doesn't really melt but the girls don't seem to mind. Birds Eye chicken pies don't contain milk which is a plus for a quick meal! Soya ice cream and sorbets go down well here and even my son who isn't dairy free loves them and prefers them to the normal ice cream!

I also buy stork pasty marg in a block for making cakes with, and the flavoured soya milks are really nice to drink - one daughter loves the plain stuff and will drink it as it is from a cup but the other can't stand it but will eat it with cereal.

You could make her birthday cake, if she wants chocolate just add some cocoa power to the mix. I sometimes do that and then cover the whole cake with dark cooking chocolate which is nice and dairy free! For their last birthday I did sponge cakes filled with lots of nice strawberry jam and bought ready made soft icing and coloured it pink. You can get lots of different decorations for cakes from the supermarket ready made.

I tend to use normal recipie books and replace the butter etc with the dairy free alternative. I bought some dairy free cook books but have never realy used any of them!

Hope this helps.




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