a theory?

[Guest guest]

,

I can't answer all your questions but at this point for you, they are

hypothetical

because in my experience being on SCD a while can change many things and reduce

sensitivity to SOME previous food intolerance. This has happened to me. ( Some

" allergies " never go away, some are just over reaction by a confused immune

system)

I suggest you start the SCD for your child, add foods gradually, cope with

the initial negative symptoms like " die off " that often manifest and allow

for healing.

There was a time I could not have honey, nuts, vanilla, pear and many other

foods and I'm packing them in now with great relish (not the kind you put

on hot dogs). Too many parents come here with TMI (too much information which

can be inhibiting) They also bring kids here that exxhibit a full deck of

autism behaviors.

I am not denying the validity of your concerns but SCD can engineer surprising

changes. And believe me you are now in the company of The Mom Pop Research

Brigade. Most of us could hang out a shingle by now! :-)

Best of luck with your SCD launch.

On Wednesday, January 21, 2004, at 07:52 AM, McConnell wrote:

> So, I hope you don't mind if I postulate a theory here. 

> This is just my THEORY, understand, but I have unfortunately had to become

> somewhat of a research analyst/microbiologist/chemist of my OWN, Carol F.

---------

c.frilegh@...

Toronto , Celiac SCD 2 years

There is no substitute for the right food!

[Guest guest]

Hi , welcome to the list. You obviously know your child very

well! I wish I had known my dd as well at such a young age! We have

to be detectives in finding out just what each of our kids can

tolerate at each stage of their SCD journey. What they tolerate

changes as their little bodies heal. My dd must be a lot like your

Luke, as she can not handle fruit or honey at all. We are going

slowly with the nuts as well but she seems to be able to tolerate the

almond butter just fine, in moderation. Carrots are okay too but if

she eats too many her hands turn orange! I've just lately been able

to add a little fruit back into her diet, at 15 weeks into it! She

may get 1/4 cup of fruit a week. Yesterday I gave her a little

Tropicana OJ in her water for flavor and she did well with it. I

think for it is more an issue of the sugars but I don't know for

sure if she has issues with the phenols/salicylates as well. I know

she doesn't tolerate much sugar at all...I'm talking about the

natural sugar found in fruits.

Glad to hear you'll have help cooking, it's a lot to juggle at first

but then it gets easy. Do the intro first you'll have much better

results and then don't add in the things you know your son reacts to

until you see some healing. That way you'll be able to know the diff

between die-off and phenols/salicylates reaction. Also epsom salts

baths help with die-off and reactions!

We're here for you!

Carey mom to 14, SCD 15wks

> Hi again - you all may be getting to know me by now, I don't know.

My name is ,....................

>

> Take care all,

>

>

> Luke (5), (3), (19 mos)

>

[Guest guest]

It seems that some kids benefit from little or no honey or fruit in there diet.

Could this be due in part by removing a major

source of phenols (fruit) from there diet???

a theory?

Hi again - you all may be getting to know me by now, I don't know. My name is

, though it always shows up as being from " " (my husband, our yahoo

acct is in his name and I have not bothered to create a new one, sorry). We

have 3 kids, our oldest, Luke, is the one we are mainly concerned about

regarding SCD. He is 5 years old, Asperger's, and has digestive issues

including regular bouts of diarrhea and gas pains. I have been gathering data,

supplies, and formulating my " plan " to start SCD next week, our Mom is even

coming this weekend to help me prepare some of the recipes. So I'm getting

excited! The science behind this diet is beyond any I've seen in other diet

recommendations we've tried. As I keep telling people, this seems to connect

all the " dots " of the other things we've tried here and there.

So, I hope you don't mind if I postulate a theory here. I've mentioned before

that Luke indeed has a " leaky gut " and as one result, he is extremely sensitive

to phenols/salicylates in foods. I use the term " salicylates " because there are

many types of phenols and Luke reacts most strongly to actual salicylates, which

are in artificial colors/flavors as well as many all natural foods. We are

hoping/praying that SCD will heal his gut and allow him to tolerate these, what

a lifesaver that would be! As it is now, if he consumes anything with cinnamon,

berries, honey, vanillin, and a whole list of other things, including most

MEDICINES, his reaction looks like this: he becomes VERY irritable, tantruming,

" stimmy " (spinning, repeating phrases, whipping toys and other items past his

eyes for visual stim, chewing things, picking things apart, etc), he slams his

body into a wall or a PERSON for that physical stimulation, he literally goes

around the house just destroying things, he won't obey as he usually does, he

yells/cries a lot, and he DOES NOT SLEEP. In addition to that, he is just SO

sad because he KNOWS he isn't " right " - he'll stand in front of me with his arms

in the air as though he wants to be held, but if I touch him he'll scream,

" Don't hold me!!!! " It's the worst situation you can imagine with your child,

just SO hard on him, on us, the other kids, the whole family - especially since

otherwise he is so sweet and personable and just has the regular " Aspie " issues.

Now, currently our only option is to avoid these things, but that is not any

kind of CURE, it is only a method of treating the symptoms. It has been my goal

and PRAYER to discover a way to CURE his gut so that he CAN have these things

and not react so badly. SCD seems to be that answer and you can bet we are

praying that it IS! Still, as we begin SCD, I plan to continue limiting the

phenolic/salicylate foods until his gut has had time to heal itself and is no

longer allowing those chemicals to pass into the bloodstream " unchecked " as they

are now, basically putting him on virtual " speed " . Once that time has passed, I

look forward to introducing honey and other things, as a test - and cannot wait

to see him tolerate them fine!!! You will be able to hear the screaming of glee

all the way from Charlotte, NC to wherever you happen to be, I'm SURE!!

Now... my POINT in going into all this, is that in all my reading here, I'm VERY

curious as to whether or not every situation that is currently being blamed on

" die off " in not actually an initial bad reaction to all the phenols/salicylates

used in this diet. I know that die-off is a very real issue, but from reading

Elaine's book, it does not seem that it should last as long or have as many

behavior-related problems as many of you have reported your children having. I

wonder if in some of these cases where these bad behaviors are lasting upwards

of 2 months, if you aren't seeing your child react to the almonds, honey, etc?

Maybe before SCD they did not get as many of these high-salicylate things? And

clearly all of them have SOME type of " leaky gut " or you would not be doing SCD

at all, so it makes sense that phenols/salicylates might prove to be an issue

for them, even if it hadn't been so severe before. Still, if these behaviors

began to improve after 2 or 3 months, that would say to ME that the gut has

begun healing from the SCD, the villi are doing their job again, and the

chemicals are no longer passing through and causing problems. Which is a huge

victory!!!! But maybe a plan would be to limit those foods initially, UNTIL

that healing has taken place, to avoid these months of bad behavior.

This is just my THEORY, understand, but I have unfortunately had to become

somewhat of a research analyst/microbiologist/chemist of my OWN, just to keep

Luke's digestion and behavior under control. And as I read Elaine's book and

looked at the diagrams and read your accounts here, it all just seems SO CLEAR

to me. I welcome any feedback, and wonder if in the future we might encourage

newbies experiencing behavior problems early on, to watch this problem of

phenols. If it is helpful, here are some lists we adhere to with Luke (see

links below), but believe me, I VERY MUCH look forward to tossing these to the

WIND once his gut is no longer leaky!!!!!!!!!!!! What an answer to prayer that

will be!!!!!!!!!!!!!!

Take care all,

Luke (5), (3), (19 mos)

http://allergies.about.com/gi/dynamic/offsite.htm?site=http://www.foodcanmakeyou\

ill.co.uk/library/articles/sal%5Ffood.htm

http://allergies.about.com/gi/dynamic/offsite.htm?site=http%3A%2F%2Fwww.zipworld\

..com.au%2F%7Eataraxy%2FSalic_03.txt

http://users.bigpond.net.au/allergydietitian/fi/sal.html

[Guest guest]

" It seems that some kids benefit from little or no honey or fruit in

there diet. Could this be due in part by removing a major source of

phenols (fruit) from there diet??? "

That is a very interesting question.

Have any of you who have problems with fruit ever been able to give

fruit when using an enzyme like No Fenol?

Jody

mom to -5.1 and -7.4

[Guest guest]

> " It seems that some kids benefit from little or no honey or fruit in

> there diet. Could this be due in part by removing a major source of

> phenols (fruit) from there diet??? "

>

>

> That is a very interesting question.

>

> Have any of you who have problems with fruit ever been able to give

> fruit when using an enzyme like No Fenol?

>

I use the no fenol enzymes from Houston and we've had great success

tolerating fruits that previously caused problems The only problem

food now seems to be almond butter.

Cristy

>

>

> Jody

> mom to -5.1 and -7.4

[Guest guest]

(or or ) : )

Your post came exactly two minutes after I was thinking about sending a post to

the list to ask how I could tell if my son's difficulties were being caused by

phenols/salicylates. I keep reading these posts from parents saying their kids

are highly sensitive to high-phenol foods, and they left me wondering, is that

our problem too? My 11-yo PDD son has been SCD for 4 weeks (strict), but is

still having major behavioral problems and aggression. On the other hand,

before we started on the intro four weeks ago he was on SCD for a couple of

weeks, but getting all legals at all stages. He was doing beautifully and

really improving -- super calm, great eye contact, very conversational, but has

gotten worse since doing the intro and early stages, so again, how do I know

whether phenols are a problem or not? I presume it would be to remove those

foods and see what happens. If so, could you or someone provide a detailed list

of all foods that should be avoided initially? Then, how long should the test

last? I'm very interested in this b/c I'm depressed to see my son doing so much

worse lately than he was when I allowed him all SCD foods. I already tried

removing all nuts almost a week ago, in case that was the problem. I had also

previously put him on a little goat yogurt, but stopped that too a few days ago.

He's only gotten worse. I had to pick him up from school yesterday due to major

aggression, and he had red circles around his eyes.

Right now he is eating meats, fish, eggs, carrots, green beans, winter squash,

zucchini, white grape juice, pineapple juice, apple cider, well-cooked apples,

well-cooked peaches (fruit just once a day, about 1/4 cup). Right now he's

getting no honey becuase I don't really need that for him if he's not getting

baked goods.

Thanks,

[Guest guest]

" Right now he is eating meats, fish, eggs, carrots, green beans,

winter squash, zucchini, white grape juice, pineapple juice, apple

cider, well-cooked apples, well-cooked peaches (fruit just once a day,

about 1/4 cup). Right now he's getting no honey becuase I don't really

need that for him if he's not getting baked goods. "

,

How much juice is he drinking?

Is he getting enough carbs?

Low blood sugar makes me really irritable...

(mine drops very low though... down near 50)

Jody

mom to -5.1 and -7.4

[Guest guest]

, I'm sorry your son is having a hard time right now. I know exactly that

frustration and I do feel for you both! As for this phenol/salicylate issue, I

really had to figure it all out by elimination. Basically, it started WAY back

when he went COMPLETELY nuts after we'd given him some Gatorade following a bad

stomach virus. I was curious to why, and from there started learning about

these chemicals, and so we did some experimenting - for one, removed apple juice

completely, for a month. Saw gradual behavior improvements. Then we gave it

back - total wild boy! So that was a definite. We did that same type of thing

with several things before I came across actual lists like these:

http://allergies.about.com/gi/dynamic/offsite.htm?site=http://www.foodcanmakeyou\

ill.co.uk/library/articles/sal%5Ffood.htm

http://allergies.about.com/gi/dynamic/offsite.htm?site=http%3A%2F%2Fwww.zipworld\

..com.au%2F%7Eataraxy%2FSalic_03.txt

http://users.bigpond.net.au/allergydietitian/fi/sal.html

Of the things you listed, the ones that would bother LUKE right now (before his

gut has had time to " heal " and not " leak " the chemicals through, which is the

problem here - the gut is not doing it's job so these chemicals are going

straight through and act like " speed " on your system) would be: squash,

zucchini, white grape juice, (pineapple JUICE is low while pineapples are high,

can't figure that out, but anyway), apple cider (I know apple juice is high, not

sure about cider but assuming so, I'm going to have to juice my own pears a

while and give him that). I know this is hard, because all these are GOOD foods

and legal with SCD, but for Luke, I'm going to have to bring those in later. To

get him started, I'm first checking to see what's legal for SCD, then checking

these lists for it's salicylate level before giving it to him. I can't wait to

eliminate that second step.

I don't know if this is the answer for you and your son, but if I can be helpful

at all, please let me know! I'm praying this is the answer for us all!

Re: a theory?

(or or ) : )

Your post came exactly two minutes after I was thinking about sending a post

to the list to ask how I could tell if my son's difficulties were being caused

by phenols/salicylates. I keep reading these posts from parents saying their

kids are highly sensitive to high-phenol foods, and they left me wondering, is

that our problem too? My 11-yo PDD son has been SCD for 4 weeks (strict), but

is still having major behavioral problems and aggression. On the other hand,

before we started on the intro four weeks ago he was on SCD for a couple of

weeks, but getting all legals at all stages. He was doing beautifully and

really improving -- super calm, great eye contact, very conversational, but has

gotten worse since doing the intro and early stages, so again, how do I know

whether phenols are a problem or not? I presume it would be to remove those

foods and see what happens. If so, could you or someone provide a detailed list

of all foods that should be avoided initially? Then,!

how long should the test last? I'm very interested in this b/c I'm

depressed to see my son doing so much worse lately than he was when I allowed

him all SCD foods. I already tried removing all nuts almost a week ago, in case

that was the problem. I had also previously put him on a little goat yogurt,

but stopped that too a few days ago. He's only gotten worse. I had to pick him

up from school yesterday due to major aggression, and he had red circles around

his eyes.

Right now he is eating meats, fish, eggs, carrots, green beans, winter squash,

zucchini, white grape juice, pineapple juice, apple cider, well-cooked apples,

well-cooked peaches (fruit just once a day, about 1/4 cup). Right now he's

getting no honey becuase I don't really need that for him if he's not getting

baked goods.

Thanks,

[Guest guest]

Why not try using an enzyme like No Fenol instead of trying to avoid

so many foods?

Jody

mom to -5.1 and -7.4

[Guest guest]

,

http://www.danasview.net/phenol.htm

Check out this website. Maybe you can try those foods that are low

in salicylate/phenols.

Gia

Mom to Jack and

SCD 7 mos

[Guest guest]

It did not work for us. We did enzymes for over a year, different brands and

types. The better option in the end was to avoid the foods.

Re: a theory?

Why not try using an enzyme like No Fenol instead of trying to avoid

so many foods?

Jody

mom to -5.1 and -7.4

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

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

,

Did you actually try the brand No Fenol?

It works differently than all of the others.

Jody

mom to -5.1 and -7.4

[Guest guest]

We were using Houston labs products, this was a couple of years ago. I don't

think we used this exact one. In all honesty, I'm just ready now to heal the

gut with SCD if we can, and then re-introduce those foods. No Fenol may be a

great option for folks, though, I hope it works well! It would have been great

for us over last couple of years, I just always found hidden things in the

enzymes themselves were exacerbating the problem, if that makes sense.

Re: a theory?

,

Did you actually try the brand No Fenol?

It works differently than all of the others.

Jody

mom to -5.1 and -7.4

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

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

How much juice is he drinking?

Is he getting enough carbs?

Low blood sugar makes me really irritable...

(mine drops very low though... down near 50)

Jody,

He's not drinking any juice. I just use it to make the jello, which he eats 3 X

a day.

[Guest guest]

,

How much jello is he eating each time?

And are you following the directions on the package to make the jello?

(trying to figure out how many carbs he is getting from the jello he

is eating.)

Jody

mom to -5.1 and -7.4

[Guest guest]

What kind of apple juice? It is illegal unless it's pressed cider with nothing

added.

On Wednesday, January 21, 2004, at 02:29 PM, McConnell wrote:

> for one, removed apple juice completely, for a month.  Saw gradual behavior

> improvements.  Then we gave it back - total wild boy!  So that was a definite.

>   We did that same type of thing with several things before I came across

> actual lists like these: 

>

Carol F.

---------

c.frilegh@...

Toronto , Celiac SCD 2 years

There is no substitute for the right food!

[Guest guest]

This was all pre-SCD, if you caught the entire conversation. Thanks.

Re: Re: a theory?

What kind of apple juice? It is illegal unless it's pressed cider with nothing

added.

On Wednesday, January 21, 2004, at 02:29 PM, McConnell wrote:

> for one, removed apple juice completely, for a month. Saw gradual behavior

> improvements. Then we gave it back - total wild boy! So that was a definite.

> We did that same type of thing with several things before I came across

> actual lists like these:

>

Carol F.

---------

c.frilegh@...

Toronto , Celiac SCD 2 years

There is no substitute for the right food!

[Guest guest]

How much jello is he eating each time?

And are you following the directions on the package to make the jello?

(trying to figure out how many carbs he is getting from the jello he

is eating.)

Jody

I do follow the package directions, but what I hadn't realized was that I was

supposed to be diluting the juice I put in the jello. I just started doing that

yesterday. So, it's now 4 pkgs jello, and 2 cups water and 2 cups juice. That

makes a large pan, and he gets 3 fairly large squares per meal (about 1/6 of the

pan).

Thanks,

[Guest guest]

Message: 1

Date: Wed, 21 Jan 2004 19:34:17 -0000

Subject: Re: a theory?

Why not try using an enzyme like No Fenol instead of trying to avoid

so many foods?

Jody

I thought someone else said that No Phenol was illegal. That's why I've been

afraid to try it. Is that right?

[Guest guest]

I think the fenol issue is an interesting one that certainly has validity. Some

kids certainly do respond poorly to phenol/salicylates until their guts are more

healed. The idea, however, that phenol intolerance is being confused with

die-off has one problem with it: experienced SCDers know that die-off is not

*just* a bad reaction but a bad reaction mixed with some visable gains. Bad

reactions also don't go on indefinately. I would imagine that a poor phenol

response would not have any associated gains and would continue on well beyond

the die-off time frame. This is, perhaps, a way to distinguish the two

responses.

Marisol

[Guest guest]

Just to add to what Marisol wrote, T. advised me to try

activated charcoal (make sure you get a legal brand), and if the

symptoms receded, it was die off.

Of course I never got her to take it ... but most of you are much

better at getting stuff into your kids than I am.

Sue (From Pickering)

> I think the fenol issue is an interesting one that certainly has

validity. Some kids certainly do respond poorly to

phenol/salicylates until their guts are more healed. The idea,

however, that phenol intolerance is being confused with die-off has

one problem with it: experienced SCDers know that die-off is not

*just* a bad reaction but a bad reaction mixed with some visable

gains. Bad reactions also don't go on indefinately. I would imagine

that a poor phenol response would not have any associated gains and

would continue on well beyond the die-off time frame. This is,

perhaps, a way to distinguish the two responses.

> Marisol

>

>

[Guest guest]

" he gets 3 fairly large squares per meal (about 1/6 of the pan). "

So, in one day he eats 1/2 of the pan?

And 1/4 cup cooked fruit?

Jody

Well, maybe between 1/3 and a 1/2. I think I forgot to say he eats goat cheese

too.