RE: Re: Diet confusion SCD or LOD or just Vitamin K2 or ?? for high ammonia

[Guest guest]

I suppose the reason I asked about gut inflammation is that this is

what I was given Elmiron (pentosan polysulphate) to deal with. It

seemed to clear up the grey skin, purple eye rings and tantrums. It's

prescribed on the suggestion of my brother Dr Dealler. Simon

Murch knows Steve. He probably knows him as a clever maverick but he

will know him as clever so he would probably be open to considering his

ideas. PPS is harmless, licensed in this country for adults for

cystitis. It's got a long track record of harmlessness -- it's cheap,

well out of patent, it's a generic. If he can't scope for gut

inflammation perhaps he might give this a whirl. Steve's papers on this

go on about cytokines and were based on AW findings in the gut (though

not on any slur on the MMR). A person can prescribe PPS without taking

the view that the MMR makes you blind. Steve's suggestion of PPS was as

an alternative to the GF/CF diet which he said was enormously

difficult.

Sally

stephaniesirr wrote:

Hello Nicola

Rice cakes just seem to make Tom a bit spacey and dark eyed. And

anything he actually craves rather than just wanting makes me

suspicious. And there are times he craves them.

The ammonia fed by protein thing is a Yasko idea that's also

supported I think by Dr Usman. It's at odds with the SCD brigade who

feel that protein heals the gut. Presumably both might be true - high

protein heals the gut but at the expense of high ammonia. I'm

waiting for Tom's uninary amino acids test to arrive from the US to

test whether he actually is high in ammonia. My feeling is that he

is. I can't deny that his gut was in better shape on SCD. It's just

impossible to balance all of these conflicting needs sometimes isn't

it?

Steph x

>

> Hi Steph

>

> I am afraid I do not have any suggestions for you - I wish I did -

still trying to educate myself in all this stuff!!

>

> But couple of things you mentioned interested me. You mentioned

that rice cakes feed his yeast?!! Luke eats 3-4 rice cakes a day and

we are often battling with a yeast problem with him. What is in rice

cakes that feed yeast?

>

> Also you mentioned high ammonia - Luke also has this problem - and

the only thing we have tried is AKA -which doesn't seemed to have

helped at all. Dr H did also suggest royal jelly - which I have

bought but haven't tried yet. But you mention limiting his protein

intake? How restrictive should this be?

>

> Luke has always be a really fussy eater though has improved

recently - so I know what you are going through. It is very

difficult, it was one of the hardest things I had to deal with. I

really wish and Tom you all the best.

>

> Nicola

>

>

>

>

> Diet confusion SCD or LOD or

just Vitamin K2 or ?? for high ammonia

>

>

> Hello

>

> When we did SCD with Tom it definitely helped his gut but he lost

> weight. Now given that we're told to restrict the amount of

protein

> he has due to high ammonia and given the choice he would gorge on

> rice cakes which we know feed his yeast and give him dark circles

we

> dont know where to turn. What on earth does he eat??

>

> He is very underweight. 42lbs. He's been 42lb for about hte past

> twelve months despite the fact that in that time he's grown about

2

> inches. You can see all his ribs.

>

> We need to get wholesome calories into this boy (and he has the

> appetite of a sparrow). If he's only going to eat a little bit I

> need to make sure that what he does eat is calorific (he runs for

> hours) but not going to complicate his diet/gut/yeast erc.

>

> Things he will eat:

>

> chicken, sardines in tomato sauce, gf anything (but I am having

my

> doubts about these commercial gf things), gf pasta (ditto),

carrots,

> oranges, rice cakes (in industrial quantities if allowed), juice

of

> all kinds, water, chips, bolognaise sometimes, tomato pasta sauce.

>

> He also loves brie and marmite but we try to steer clear of

those. I

> am currently giving yucca with each protein meal and k2 once a

day.

> But is this just going to stop him using the protein properly? If

we

> go back to SCD how do we balance that with high ammonia?

>

> Help!

>

> Steph x

>

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[Guest guest]

I suppose the reason I asked about gut inflammation is that this is

what I was given Elmiron (pentosan polysulphate) to deal with. It

seemed to clear up the grey skin, purple eye rings and tantrums. It's

prescribed on the suggestion of my brother Dr Dealler. Simon

Murch knows Steve. He probably knows him as a clever maverick but he

will know him as clever so he would probably be open to considering his

ideas. PPS is harmless, licensed in this country for adults for

cystitis. It's got a long track record of harmlessness -- it's cheap,

well out of patent, it's a generic. If he can't scope for gut

inflammation perhaps he might give this a whirl. Steve's papers on this

go on about cytokines and were based on AW findings in the gut (though

not on any slur on the MMR). A person can prescribe PPS without taking

the view that the MMR makes you blind. Steve's suggestion of PPS was as

an alternative to the GF/CF diet which he said was enormously

difficult.

Sally

stephaniesirr wrote:

Hello Nicola

Rice cakes just seem to make Tom a bit spacey and dark eyed. And

anything he actually craves rather than just wanting makes me

suspicious. And there are times he craves them.

The ammonia fed by protein thing is a Yasko idea that's also

supported I think by Dr Usman. It's at odds with the SCD brigade who

feel that protein heals the gut. Presumably both might be true - high

protein heals the gut but at the expense of high ammonia. I'm

waiting for Tom's uninary amino acids test to arrive from the US to

test whether he actually is high in ammonia. My feeling is that he

is. I can't deny that his gut was in better shape on SCD. It's just

impossible to balance all of these conflicting needs sometimes isn't

it?

Steph x

>

> Hi Steph

>

> I am afraid I do not have any suggestions for you - I wish I did -

still trying to educate myself in all this stuff!!

>

> But couple of things you mentioned interested me. You mentioned

that rice cakes feed his yeast?!! Luke eats 3-4 rice cakes a day and

we are often battling with a yeast problem with him. What is in rice

cakes that feed yeast?

>

> Also you mentioned high ammonia - Luke also has this problem - and

the only thing we have tried is AKA -which doesn't seemed to have

helped at all. Dr H did also suggest royal jelly - which I have

bought but haven't tried yet. But you mention limiting his protein

intake? How restrictive should this be?

>

> Luke has always be a really fussy eater though has improved

recently - so I know what you are going through. It is very

difficult, it was one of the hardest things I had to deal with. I

really wish and Tom you all the best.

>

> Nicola

>

>

>

>

> Diet confusion SCD or LOD or

just Vitamin K2 or ?? for high ammonia

>

>

> Hello

>

> When we did SCD with Tom it definitely helped his gut but he lost

> weight. Now given that we're told to restrict the amount of

protein

> he has due to high ammonia and given the choice he would gorge on

> rice cakes which we know feed his yeast and give him dark circles

we

> dont know where to turn. What on earth does he eat??

>

> He is very underweight. 42lbs. He's been 42lb for about hte past

> twelve months despite the fact that in that time he's grown about

2

> inches. You can see all his ribs.

>

> We need to get wholesome calories into this boy (and he has the

> appetite of a sparrow). If he's only going to eat a little bit I

> need to make sure that what he does eat is calorific (he runs for

> hours) but not going to complicate his diet/gut/yeast erc.

>

> Things he will eat:

>

> chicken, sardines in tomato sauce, gf anything (but I am having

my

> doubts about these commercial gf things), gf pasta (ditto),

carrots,

> oranges, rice cakes (in industrial quantities if allowed), juice

of

> all kinds, water, chips, bolognaise sometimes, tomato pasta sauce.

>

> He also loves brie and marmite but we try to steer clear of

those. I

> am currently giving yucca with each protein meal and k2 once a

day.

> But is this just going to stop him using the protein properly? If

we

> go back to SCD how do we balance that with high ammonia?

>

> Help!

>

> Steph x

>

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 09/12/2006

[Guest guest]

Hi,

Have you tried making your own coconut

milk and using that as a basis for smoothies? Coconut is good for the gut, SCD and if

you blend in avocado and very ripe bananas or cooked pineapple if tolerated

they are great and filling. My NT

child drinks them too. Also there are

some good coconut based recipes and the almond flour muffins are also filling. Only we have to be careful with these as

they can cause constipation in . Also I don’t know how long you were

on SCD but with he stopped being ravenous after about 4-5 months and his

diet has expanded a lot on it. So

much so that most evening meals are SCD and the whole family enjoys them. I never thought I would ever stop making

2 or 3 different meals every dinner time.

Also have you asked for advice on

pecanbread? That is where I learned

about the smoothies etc . Finally we

are also attempting LOD only we are doing it very gradually. At the moment we simply avoid high

oxalate fruit and veg.

Don’t know if this is of any use at

all.

Best of luck

Elaine

From: Autism Treatment [mailto:Autism Treatment ] On Behalf Of Sharon

Sent: 11 December 2006 00:10

Autism Treatment

Subject:

Re: Diet confusion SCD or LOD or just Vitamin K2 or

?? for high ammonia

Hi Steph,

Know how you feel....

We are very restricted and Katy is not growing , on the 3rd centile

for growth.

If I give her food she can't tolerate ,it will make her inflammation

worse.I'm hoping with time and keeping inflammation down she will

start absorbing more.

We give here Avocados ,I feel she tolerates things better if they

are soaked.I make her flour from soaked mung beans and

chestnuts,these are quite starchy.

We are also Low protein,SCD apart form rice occassionally and LOD

which I feel is going to be winner for us.

Sorry not more help.

Love Sharon xx

>

> Hello

>

> When we did SCD with Tom it definitely helped his gut but he lost

> weight. Now given that we're told to restrict the amount of

protein

> he has due to high ammonia and given the choice he would gorge on

> rice cakes which we know feed his yeast and give him dark circles

we

> dont know where to turn. What on earth does he eat??

>

> He is very underweight. 42lbs. He's been 42lb for about hte past

> twelve months despite the fact that in that time he's grown about

2

> inches. You can see all his ribs.

>

> We need to get wholesome calories into this boy (and he has the

> appetite of a sparrow). If he's only going to eat a little bit I

> need to make sure that what he does eat is calorific (he runs for

> hours) but not going to complicate his diet/gut/yeast erc.

>

> Things he will eat:

>

> chicken, sardines in tomato sauce, gf anything (but I am having my

> doubts about these commercial gf things), gf pasta (ditto),

carrots,

> oranges, rice cakes (in industrial quantities if allowed), juice

of

> all kinds, water, chips, bolognaise sometimes, tomato pasta sauce.

>

> He also loves brie and marmite but we try to steer clear of those.

I

> am currently giving yucca with each protein meal and k2 once a

day.

> But is this just going to stop him using the protein properly? If

we

> go back to SCD how do we balance that with high ammonia?

>

> Help!

>

> Steph x

>

[Guest guest]

Hi

I am thinking of having an allergy test done for Luke. What companies have people used? I have heard of York Allergy Test - is this the bext company to go with.

Would appreciate to hear from other people who have done the test.

Thanks

Nicola

Re: Diet confusion SCD or LOD or just Vitamin K2 or ?? for high ammonia

Hi StephJoe had a thing for rice cakes too, would eat 2 packets a day if he could, and came out as mildly intolerant to rice in a york allergy test I had done years ago. Apparently this is quite common when you substitute one food group for another, ie rice for gluten.I read somewhere rice cakes have the highest G.I. reading you can get, but I'm not sure of the relevance of this!When I took Joe off rice cakes I gave him corn cakes instead, but when he came off corn for SCD two years ago he had the worst withdrawals ever so I wouldn't recommend that.I am lucky Joe is quite a big boy and eats all the time but I add avocado to all his baked foods as it is high fat. Low protein SCD is a hard one though, I am hoping Joe doesnt have that Yasko mutation. I think Sharon in Surrey had that result so maybe she has some tips to pass on.How is Tom with honey?

[Guest guest]

Hi

I am thinking of having an allergy test done for Luke. What companies have people used? I have heard of York Allergy Test - is this the bext company to go with.

Would appreciate to hear from other people who have done the test.

Thanks

Nicola

Re: Diet confusion SCD or LOD or just Vitamin K2 or ?? for high ammonia

Hi StephJoe had a thing for rice cakes too, would eat 2 packets a day if he could, and came out as mildly intolerant to rice in a york allergy test I had done years ago. Apparently this is quite common when you substitute one food group for another, ie rice for gluten.I read somewhere rice cakes have the highest G.I. reading you can get, but I'm not sure of the relevance of this!When I took Joe off rice cakes I gave him corn cakes instead, but when he came off corn for SCD two years ago he had the worst withdrawals ever so I wouldn't recommend that.I am lucky Joe is quite a big boy and eats all the time but I add avocado to all his baked foods as it is high fat. Low protein SCD is a hard one though, I am hoping Joe doesnt have that Yasko mutation. I think Sharon in Surrey had that result so maybe she has some tips to pass on.How is Tom with honey?

[Guest guest]

Hiya, for those of doing scd ,could someone give me some tips re quick meals and cheese,kefir,making yogurts etc or recommending a good u.k source for starter cultures.Hearing such good things about the diet but i am such a lousy cook.Just reducing grains to eg one meal a day and removing soya has really helped .Any tips would be gratefully received but jack really misses the trufree custard cream biscuits! how do you all your children cope with denials? Thanks,ninaJosie Wilkinson wrote:

my son also had a rice cake thing going pre scd, esp those yeast extract ones ( who'ld blame him ) anyway could anyone point me in the right direction to read more about yasko, in particular the ammonia issue, know nothing about yasko or ammonia, and my son is scd and having a lot of reflux at the moment, dont know if the 2 are related but I need to read around a bit, thanks Josie xxxxxx>> Hi Steph> Joe had a thing for rice cakes too, would eat 2 packets a day if he > could, and came out as mildly intolerant to rice in a york allergy test > I had done years ago. Apparently this is quite common when you > substitute one food group for another, ie rice for gluten.> I read somewhere rice cakes have

the highest G.I. reading you can get, > but I'm not sure of the relevance of this!> When I took Joe off rice cakes I gave him corn cakes instead, but when > he came off corn for SCD two years ago he had the worst withdrawals > ever so I wouldn't recommend that.> I am lucky Joe is quite a big boy and eats all the time but I add > avocado to all his baked foods as it is high fat. Low protein SCD is a > hard one though, I am hoping Joe doesnt have that Yasko mutation. I > think Sharon in Surrey had that result so maybe she has some tips to > pass on.> How is Tom with honey?> >

[Guest guest]

Hiya, for those of doing scd ,could someone give me some tips re quick meals and cheese,kefir,making yogurts etc or recommending a good u.k source for starter cultures.Hearing such good things about the diet but i am such a lousy cook.Just reducing grains to eg one meal a day and removing soya has really helped .Any tips would be gratefully received but jack really misses the trufree custard cream biscuits! how do you all your children cope with denials? Thanks,ninaJosie Wilkinson wrote:

my son also had a rice cake thing going pre scd, esp those yeast extract ones ( who'ld blame him ) anyway could anyone point me in the right direction to read more about yasko, in particular the ammonia issue, know nothing about yasko or ammonia, and my son is scd and having a lot of reflux at the moment, dont know if the 2 are related but I need to read around a bit, thanks Josie xxxxxx>> Hi Steph> Joe had a thing for rice cakes too, would eat 2 packets a day if he > could, and came out as mildly intolerant to rice in a york allergy test > I had done years ago. Apparently this is quite common when you > substitute one food group for another, ie rice for gluten.> I read somewhere rice cakes have

the highest G.I. reading you can get, > but I'm not sure of the relevance of this!> When I took Joe off rice cakes I gave him corn cakes instead, but when > he came off corn for SCD two years ago he had the worst withdrawals > ever so I wouldn't recommend that.> I am lucky Joe is quite a big boy and eats all the time but I add > avocado to all his baked foods as it is high fat. Low protein SCD is a > hard one though, I am hoping Joe doesnt have that Yasko mutation. I > think Sharon in Surrey had that result so maybe she has some tips to > pass on.> How is Tom with honey?> >

[Guest guest]

Hiya, for those of doing scd ,could someone give me some tips re quick meals and cheese,kefir,making yogurts etc or recommending a good u.k source for starter cultures.Hearing such good things about the diet but i am such a lousy cook.Just reducing grains to eg one meal a day and removing soya has really helped .Any tips would be gratefully received but jack really misses the trufree custard cream biscuits! how do you all your children cope with denials? Thanks,ninaJosie Wilkinson wrote:

my son also had a rice cake thing going pre scd, esp those yeast extract ones ( who'ld blame him ) anyway could anyone point me in the right direction to read more about yasko, in particular the ammonia issue, know nothing about yasko or ammonia, and my son is scd and having a lot of reflux at the moment, dont know if the 2 are related but I need to read around a bit, thanks Josie xxxxxx>> Hi Steph> Joe had a thing for rice cakes too, would eat 2 packets a day if he > could, and came out as mildly intolerant to rice in a york allergy test > I had done years ago. Apparently this is quite common when you > substitute one food group for another, ie rice for gluten.> I read somewhere rice cakes have

the highest G.I. reading you can get, > but I'm not sure of the relevance of this!> When I took Joe off rice cakes I gave him corn cakes instead, but when > he came off corn for SCD two years ago he had the worst withdrawals > ever so I wouldn't recommend that.> I am lucky Joe is quite a big boy and eats all the time but I add > avocado to all his baked foods as it is high fat. Low protein SCD is a > hard one though, I am hoping Joe doesnt have that Yasko mutation. I > think Sharon in Surrey had that result so maybe she has some tips to > pass on.> How is Tom with honey?> >

[Guest guest]

Sally, it’s Tom’s

birthday this weekend and I’d love to have this recipe. I suppose I could

substitute the sugar with xylitol, couldn’t i?

Sara x

[Autism-Biomedical-

Europe] Re: Diet confusion SCD or LOD or just Vitamin K2 or ?? for high ammonia

thank you for this! Just yesterday I had a drink wtih

coconut milk,

pineapple and almonds and thought " this could make a smoothie " . I

know coconut milk is meant to be good stuff, I'll give this a go for

the Boy Wonder

> >

> > Hello

> >

> > When we did SCD with Tom it definitely helped his gut but he lost

> > weight. Now given that we're told to restrict the amount of

protein

> > he has due to high ammonia and given the choice he would gorge on

> > rice cakes which we know feed his yeast and give him dark circles

> we

> > dont know where to turn. What on earth does he eat??

> >

> > He is very underweight. 42lbs. He's been 42lb for about hte past

> > twelve months despite the fact that in that time he's grown about

2

> > inches. You can see all his ribs.

> >

> > We need to get wholesome calories into this boy (and he has the

> > appetite of a sparrow). If he's only going to eat a little bit I

> > need to make sure that what he does eat is calorific (he runs for

> > hours) but not going to complicate his diet/gut/yeast erc.

> >

> > Things he will eat:

> >

> > chicken, sardines in tomato sauce, gf anything (but I am having

my

> > doubts about these commercial gf things), gf pasta (ditto),

> carrots,

> > oranges, rice cakes (in industrial quantities if allowed), juice

of

> > all kinds, water, chips, bolognaise sometimes, tomato pasta sauce.

> >

> > He also loves brie and marmite but we try to steer clear of

those.

> I

> > am currently giving yucca with each protein meal and k2 once a

> day.

> > But is this just going to stop him using the protein properly? If

> we

> > go back to SCD how do we balance that with high ammonia?

> >

> > Help!

> >

> > Steph x

> >

>

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