Re: Advice on Is SCD right for us?/Sharlene

[Guest guest]

Sharlene, can you please explain...

do you mean that if one has

issues of putrefaction dysbiosis

or severe malabsorption, SCD is not right

Why so?

my son had very bad breath pre-SCD

like putrid meat

now with SCD, his breath is baby fresh again

(and he does not brush teeth coz for a while

we struggled with legal toothpaste and OT issues)

according to his Metametrix lab, he had

malabsorption

but he seems to benefit from SCD

please let me know what you mean

because I may be missing something

thanks

Jzin

> I would NOT try this diet if you are having issues of putrefaction

dysbiosis

> or severe malabsorption. If either of these issues are present

you are doing

> more harm than good.

> Sharlene

>

>

>

[Guest guest]

Putrefaction dysbiosis is managed w/a diet high in both soluble and insoluble

fiber and low in animal protein. In fermentation dysbiosis, by contrast,

starch and insoluble fiber exacerbate the abnormal but ecology. It appears, SCD

is the answer in the fermentation case. ( I would love any moderators or

Elaine to investigate this idea)

Unfortunately, my son has both issues. His brain did wonderful on SCD, but

his central nervous system was quickly plagued by, what I believe is, methyl

malonic acidemia. HIs stool PH became elevated (probably from elevated ammonia

production) and his SCFA profile on his OAT noted marked decreases in

butyrate. Outwardly, he started to have muscle wasting and severe muscle

weakness.

We then abandoned SCD. We are now trying to work with the inflammatory

piece for the GI tract with various herbs. We are also using enzymes. His

situation seems to be improving. God willing.

As an aside, folks w/ MS do better on meat free diets. My son, at times,

seems to have a tough time with fine and gross motor skills. Obviously, all

these auto-immune disorders are closely related but the gut ecology and diet are

such an incredibly important piece in the puzzle. Hopefully, sooner than

later, we can examine lab results and guide folks in terms of diet and

supplements.

So.......low SCFA components on OAT MAY be a sign that SCD will not be the

magic bullet.

All the best,

Sharlene, mom to baby jake 15 months old -- still cute as a button!!

[Guest guest]

I am really ignorant here...please help. Kenzie had an OAT test done in

September. His total SCFA was 97.47. Is that high or low? He has a

malabsorption problem. Right now he eats mostly chicken, bananas and pineapple

juice. What do you think? I'm really concerned about all of this now.

Thanks

Penny

Kenzie ASD

SCD 6 months

Re: Re: Advice on Is SCD right for us?/Sharlene

Putrefaction dysbiosis is managed w/a diet high in both soluble and insoluble

fiber and low in animal protein. In fermentation dysbiosis, by contrast,

starch and insoluble fiber exacerbate the abnormal but ecology. It appears,

SCD

is the answer in the fermentation case. ( I would love any moderators or

Elaine to investigate this idea)

Unfortunately, my son has both issues. His brain did wonderful on SCD, but

his central nervous system was quickly plagued by, what I believe is, methyl

malonic acidemia. HIs stool PH became elevated (probably from elevated

ammonia

production) and his SCFA profile on his OAT noted marked decreases in

butyrate. Outwardly, he started to have muscle wasting and severe muscle

weakness.

We then abandoned SCD. We are now trying to work with the inflammatory

piece for the GI tract with various herbs. We are also using enzymes. His

situation seems to be improving. God willing.

As an aside, folks w/ MS do better on meat free diets. My son, at times,

seems to have a tough time with fine and gross motor skills. Obviously, all

these auto-immune disorders are closely related but the gut ecology and diet

are

such an incredibly important piece in the puzzle. Hopefully, sooner than

later, we can examine lab results and guide folks in terms of diet and

supplements.

So.......low SCFA components on OAT MAY be a sign that SCD will not be the

magic bullet.

All the best,

Sharlene, mom to baby jake 15 months old -- still cute as a button!!

[Guest guest]

Sharlene

> but

> his central nervous system was quickly plagued by, what I believe is, methyl

> malonic acidemia.

>

I don't know much about methyl malonic acidemia but I know that

malonic acid is a tumor growth stimulator. It is contained in foods

like

carrots and broccoli but recently it was found that malonic acid

found in such vegetables come from pesticides. Are you eating organic

food or washing vegetables with a chemical remover?

Sunny

Japan

[Guest guest]

Dear Sharlene

I thank you copiously in advance for helping me with this !

We never did the OAT test

but his methylmalonate on 9/03 Metametrix Organix

was 4.9 a high compared to ref of <=4.8

his 9/03 Doctor's Data Comprehensive Stool Analysis/Parasitology x3

showed SCFA breakdown of

50% acetate (ref 54-67%)

21% propionante (ref 16-24%)

28% butyrate (ref 14-23%)

1% valerate (ref 3-13%)

and stool pH was 5.4 (ref 6-7)

(above test done pre-SCD, only GFCF)

Some time back, I posted an e-mail about my son

who seems to do worse when I feed him meats

ie, the next day, he growls, has more transition tantrums

and cries a lot more

I first noticed it when by chance, one evening,

I did not serve him meat and for the first time

the next day, he was calm and the most easiest going kid

no transition tantrums, was able to leave the dining table

and walk to playroom for ABA even when he saw baby brother

eating kiwi's (usually, he would protest and want it too)

we did 2 separate week long trials of no-meats versus meats diet

and it was clear cut: meat=more crying the next day

I suspected either

(A) discomfort: acid reflux? Clostridia happy? other pains?

( with meats, he gets more hungry and wants more food

© with meats, he is more energetic and thus behaviourally

more defiant to do ABA work. If C, then it's just behaviours, then

meat diet is OK. But unsure.

(we only serve organic meats/foods; am trying to find grass-fed too)

(my son's behaviours improved most with SCD

but scary as it is, his gross/fine motor is NOT well

his body is stiff/limp

and he has limited range of motions. Can't lift arms high

I really am ignorant in this aspect! HELP)

also, he is spacey

thus, I tried to make him vegetarian for a while

but since I could not feed him legumes yet on SCD

I was afriad of him not getting protein

and I worry about his spacey-ness (lack of food?)

and recently, my GI doctor YELLED at me for " starving " him

I told him, yes, I would like to feed my son proteins,

but HOW? No answer " just feed him what he likes, make him happy "

is his non specific reply

currently: suspecting he cannot digest animal products (meats). So..

1)I give him chicken in the morning and afternoons only

hoping he would digest it all by bedtime

2)I give him only once in a while

3)I do food combination. No meats 2 hours circa starch (no starch

anyway) or green beans (no other beans currently)

4)I upped his Kirkmans' digestive enzymes to 2 capsules

when I feed him meats

5)only serve vegetarian for dinner coz we suspect meat

gives him acid reflux at night

6) no more frying/sautee in this home (fear of acid reflux)

for at least a month

7)stopped giving any other meats (pork, lamb, beef, rabbit, etc),

just chicken coz maybe chicken is easiest to digest?

if not SCD diet

what do you recommend?

with the very little I know,

I suspect, he is like your son: having both fermentation and

putrefaction issues

I am totally unfamiliar with MS

so far, my son's SCD, modified to suit him:

-eggs only about once/week (IgG +4, allergic in 9/03)

-limited meat. Coz I can't decide if he's getting enough protein

-limited fruits (limited banana, avocado, rotate) fear of yeast

-no juice except homemade raw carrots, veggies

-no frying, only put sunflower/olive (rotate) oils on boiled meals

-Feingold, GFCF (no dairy yet), supplements (stopped megadoses of

multivitamins since diarheas. Diarheas have stopped. Haven't

reintroduced mega doses of vitamins yet)

-Goal: I hope his gut heals, so I can introduce more variety

of SCD foods, beans, legumes etc in time

i.e.,

my son mostly eats boiled vegetables, broths, limited fruits (FOR NOW)

on and off chicken/eggs

(that's why GI doctor yelled at me for " starving " him)

his weight 34 lb (age 3) is the same since I started SCD

he APPEARS healthy/big/sturdy outwardly, a little chubby

healthy, smooth, a little rosy skin

I don't intend to starve him

I just see that he suffers when he eats meats (which he LOVES)

what do you feed your son?

Thanks A LOT to all who read this !!!!!!!!!!!!!!!!!!!

love,

Jzin Teng

California, USA

Dimiter age 3, ASD

imperfect SCD since 12/29/03

SCD intro diet since 2/23/04

lots of gains on SCD

[Guest guest]

Jzin,

Your son's SCFA profile & Stool PH seem to be suited to SCD - make sure to

do a blood test to check b12 and folic acid levels. Sometimes mma is elevated

when b12 is low

(By comparison, Jake's methlymalonic acid is 37, stool ph 7.1, and

acetate/proprionate/butyrate levels are unbelievably low).

Sunny,

All he eats is organic food, glass bottled spring water (Mountain Valley),

and pasture fed meat. Environmentally clean home. Most of these kids have low

glutathione levels so ANY chemicals, toxins, molds will not be cleared

through their systems. Organic food/quality plastic free water and pasture fed

meat (glutamate free) are essential. Fun house & fun activities -- the liver

is the " emotion " organ, any stress will make things worse.

Marie,

I've worked w/Marsden at Children's in Boston, Buie at Mass General in

Boston, Kartzinel in Melbourne Fl., currently Corsen at New England Medical in

Boston, as well as lots of other naturopaths, homeopaths, ayurvedics,

nutritionists, etc. Unfortunately, no one is able to put it all together.

..... Levin

from this list has been very helpful -

,

Feel free to share these ideas.

We are exploring amino acids, the mitochondrial cocktail, and a blood

exchange. (My Downs syndrome brother, 40, had several blood exchanges as a baby

and

he grew into a very healthy man -- I've queried the experts on this idea)

Currently Jake eats all fruits & veggies, turkey, soaked quinoa & amaranth.

Mentally he is doing great, but he has severe malabsorption issues.

Keep plugging away and stay positive..... I've seen success stories.

Sharlene

[Guest guest]

Jzin,

There have been some thoughts by some especially on other boards

that some children have problems with amino acids, which could be

exacerbated by meat. I don't know if this ever was figured out,

there was some conjecture at one point.

Motor problems can be due to muscle wasting, which might happen if

your child's body doesn't have enough glucose (generally from carbs)

for fuel, and ends up burning muscle for fuel. This can happen if

the carb intake is too low (you can use something like

www.fitday.com to figure daily carb intake). This can also be due

to mitochondrial disorders.

It seeems some kids have multiple problems.

Of course I don't KNOW what is going on with your son, just trying

to give you some other things to look into.

If you do not see specific bad reactions from fruits, maybe you

could use more of those, and accept a slower rate of improvement. I

think most of us at one time or another thought we could just get

rid of yeast quickly and keep it gone forever. Personnaly, I no

longer believe that!

In my opinion, your observation of your son's reactions is the most

valuable.

-- Sue, mom to Adam (6, ASD) and (9, n/t, gut issues)

SCD 5 months

[Guest guest]

Angie,

Even though you peel these? You are atill wahing down, before, after

peeling?

Blessings,

Doreen asd 12,day 18

Re: Re: Advice on Is SCD right for us?/Sharlene

Hi everyone ,

Grapefruit seed extract is a great for washing all fruit and veggies ,

I even wash down organic frozen vegetables to , just to be on the safe side of

things . It took me to long to clean up the bad bacteria's in my three children

..

Angie

[Guest guest]

I have found much the same information on this, as I believe Zach has this

type of dysbiosis. He still, after almost 8 months on strict SCD, does not

have formed stools. So we've begun taking other measures because he has

never been a yeasty kid, at least that we can tell from behavior and

testing. I think it's important for parents of these kids to consider this

if their kids aren't responding after several months on the diet, just

another thing to think about as if we needed more. I haven't even begun to

wrap my mind around doing SCD with emphasis on soluble/insoluble fibers but

am thinking about it more and more.

> Putrefaction dysbiosis is usually managed with a diet high in both

> soluble and insoluble fiber and low in saturated fat and animal

> protein. These dietary changes work to lower the concentrations of

> Bacteroides and increase concentrations of lactic acid-producing

> bacteria (Bifidobacteria, Lactobacillus and lactic acid

> streptococci) in the colon. "

>

> further down it says, " Dietary Fiber (Insoluble Fiber, Insoluble

> Fibers, Soluble Fiber, Soluble Fibers)

> There are two types of dietary fiber - soluble and insoluble.

> Insoluble fiber acts like a sponge; it absorbs water and moves solid

> waste out of the intestines. It is found mainly in whole grains and

> on the outside of seeds, fruits, and legumes. Soluble fiber is found

> in fruits, vegetables, seeds, brown rice, barley, oats and oat bran.

> It forms a gel when mixed with liquid producing a softer stool. It

> also prevents and reduces the absorption of certain substances from

> the intestines into the bloodstream. "

>

> Did you try using SCD legal soluble fibers and insoluble fibers?

> As for the flip side - the severe malabsorption that you mentioned.

> I had that. I was hospitalized repeatedly with severe diarrhea &

> vomiting put on IV treatment with steroids, not even able to

> tolerate water. (Wasn't even allowed to suck on ice) Three months

> after being on SCD I had perfect absorption shown by extensive blood

> panels I had done. The doctors were pretty darned amazed at the

> rapid turn around.

>

> Sheila UC, 20 years -- in remission after 37 mos SCD

> mom of SCD 22 mos

>

>

>

>

>

>

> > Putrefaction dysbiosis is managed w/a diet high in both soluble

> and insoluble

> > fiber and low in animal protein. In fermentation dysbiosis, by

> contrast,

> > starch and insoluble fiber exacerbate the abnormal but ecology.

> It appears, SCD

> > is the answer in the fermentation case. ( I would love any

> moderators or

> > Elaine to investigate this idea)

> >

> > Unfortunately, my son has both issues. His brain did wonderful

> on SCD, but

> > his central nervous system was quickly plagued by, what I believe

> is, methyl

> > malonic acidemia.

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

[Guest guest]

Hi Angie, what a great idea. I used to wash the fruits and veggies with vitamin

C crystals but a really like the grapefruit seed extract idea. What is the ratio

of GSE and water. Thanks

Re: Re: Advice on Is SCD right for us?/Sharlene

Hi everyone ,

Grapefruit seed extract is a great for washing all fruit and veggies

, I even wash down organic frozen vegetables to , just to be on the safe side of

things . It took me to long to clean up the bad bacteria's in my three children

..

Angie

[Guest guest]

Sheila:

I couldn't get the web site to come up that you posted. Could you please send

me the full address?

thanks

Penny

Re: Advice on Is SCD right for us?/Sharlene

Hi Sharlene,

After some investigating (would have sent this sooner but they got

lost somewhere in cyberspace) I finally tracked down some info on

putrefaction dysbiosis

Here's a quote from this website http://www.diagnose-

me.com/cond/C583962.html

" Treatment:

Putrefaction dysbiosis is usually managed with a diet high in both

soluble and insoluble fiber and low in saturated fat and animal

protein. These dietary changes work to lower the concentrations of

Bacteroides and increase concentrations of lactic acid-producing

bacteria (Bifidobacteria, Lactobacillus and lactic acid

streptococci) in the colon. "

further down it says, " Dietary Fiber (Insoluble Fiber, Insoluble

Fibers, Soluble Fiber, Soluble Fibers)

There are two types of dietary fiber - soluble and insoluble.

Insoluble fiber acts like a sponge; it absorbs water and moves solid

waste out of the intestines. It is found mainly in whole grains and

on the outside of seeds, fruits, and legumes. Soluble fiber is found

in fruits, vegetables, seeds, brown rice, barley, oats and oat bran.

It forms a gel when mixed with liquid producing a softer stool. It

also prevents and reduces the absorption of certain substances from

the intestines into the bloodstream. "

Did you try using SCD legal soluble fibers and insoluble fibers?

As for the flip side - the severe malabsorption that you mentioned.

I had that. I was hospitalized repeatedly with severe diarrhea &

vomiting put on IV treatment with steroids, not even able to

tolerate water. (Wasn't even allowed to suck on ice) Three months

after being on SCD I had perfect absorption shown by extensive blood

panels I had done. The doctors were pretty darned amazed at the

rapid turn around.

Sheila UC, 20 years -- in remission after 37 mos SCD

mom of SCD 22 mos

> Putrefaction dysbiosis is managed w/a diet high in both soluble

and insoluble

> fiber and low in animal protein. In fermentation dysbiosis, by

contrast,

> starch and insoluble fiber exacerbate the abnormal but ecology.

It appears, SCD

> is the answer in the fermentation case. ( I would love any

moderators or

> Elaine to investigate this idea)

>

> Unfortunately, my son has both issues. His brain did wonderful

on SCD, but

> his central nervous system was quickly plagued by, what I believe

is, methyl

> malonic acidemia.

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

Hi Thea,,

Are you using yogurt or probiotics? Did you start with the intro?

Has he been tested for for parasites, C. diff etc.?

Sheila UC, 20 years -- in remission after 37 mos SCD

mom of SCD 22 mos

> I have found much the same information on this, as I believe Zach has this

> type of dysbiosis. He still, after almost 8 months on strict SCD, does

not

> have formed stools. So we've begun taking other measures because he has

> never been a yeasty kid, at least that we can tell from behavior and

> testing. I think it's important for parents of these kids to consider

this

> if their kids aren't responding after several months on the diet, just

> another thing to think about as if we needed more. I haven't even begun

to

> wrap my mind around doing SCD with emphasis on soluble/insoluble fibers

but

> am thinking about it more and more.

[Guest guest]

Hi Penny,

It's : http://www.diagnose-me.com/cond/C583962.html

Sheila

> Sheila:

>

> I couldn't get the web site to come up that you posted. Could you

please send me the full address?

>

> thanks

> Penny

[Guest guest]

Hey ,

For sink washing veggies and produce . I use 30 drops of grapefruit seed

extract in a sink full of cold water, and for spray washing I use 2o drops in a

32 ounce sprayer and water , you can also use this to kill off the bacteria of

cutting boards also .

Take care,

Angie

-----

[Guest guest]

Hi Thea,

If he still has parasites you probably won't see much progress with SCD

until you get them under control with extra measures. Here's a very

interesting link about them on the old Lyris list. Let me know if you have

any problems opening these.

http://lyris.dundee.net/read/messages?id=235760#235760

http://lyris.dundee.net/read/messages?id=240093#240093

http://lyris.dundee.net/read/messages?id=217102#217102

Sheila UC, 20 years -- in remission after 37 mos SCD

mom of SCD 22 mos

>

> > Has he been tested for for parasites, C. diff etc.?

> >

> We have done the CP probiotic, yogurt, did the intro diet around 12 weeks

> SCD. He does have a parasite that we haven't confirmed is gone, but that

is

> my last hold out as to whether SCD will work for Zach. He doesn't have

> clostridia and has never been a yeast kid.

>

> Thea

>

>

>

[Guest guest]

Thanks, Angie.

Re: Re: Advice on Is SCD right for us?/Sharlene

Hey ,

For sink washing veggies and produce . I use 30 drops of grapefruit seed

extract in a sink full of cold water, and for spray washing I use 2o drops in a

32 ounce sprayer and water , you can also use this to kill off the bacteria of

cutting boards also .

Take care,

Angie

-----