Re: questioning casein free - long

[Guest guest]

> We'll have been CF 3 weeks tomorrow. I'm not seeing any improvements

> at all.> now I am not sure about it. I will pull it and see how it goes.

>

> I'd like to start rotating fruit, nuts, and casien , still SCD legal.

> I'd like to start with the goat yogurt, slowly of course. I feel like

> if I had a plan written down for what he was eating every 4 days and I

> stuck to it, we could give his body a break from having the same thing

> all the time and he'd have more variety. It would be really hard work

> to have everything I needed on hand, but it would be worth it if it

> meant he could eat more different kinds of foods.

>

Chrystee,

Hopefully the other parents will have some suggestions for you. I know this must

be terribly frustrating. It is my impression that SCD is not implimented as a

rotation diet. There is no mention of animal protein. Are you a vegetarian?

Yogurt is usually not started until even later than 3 weeks, Did you start with

the introductory diet? Have you tried other types of nuts, any vegetables?

Excuse me if you have documented all this before. This does not sound like

balanced diet. Perhaps there are foods not tolerated that you have not

mentioned.

Carol F.

Celiac Adult SCD 2 3/4 years.

[Guest guest]

> We'll have been CF 3 weeks tomorrow. I'm not seeing any improvements

> at all.> now I am not sure about it. I will pull it and see how it goes.

>

> I'd like to start rotating fruit, nuts, and casien , still SCD legal.

> I'd like to start with the goat yogurt, slowly of course. I feel like

> if I had a plan written down for what he was eating every 4 days and I

> stuck to it, we could give his body a break from having the same thing

> all the time and he'd have more variety. It would be really hard work

> to have everything I needed on hand, but it would be worth it if it

> meant he could eat more different kinds of foods.

>

Chrystee,

Hopefully the other parents will have some suggestions for you. I know this must

be terribly frustrating. It is my impression that SCD is not implimented as a

rotation diet. There is no mention of animal protein. Are you a vegetarian?

Yogurt is usually not started until even later than 3 weeks, Did you start with

the introductory diet? Have you tried other types of nuts, any vegetables?

Excuse me if you have documented all this before. This does not sound like

balanced diet. Perhaps there are foods not tolerated that you have not

mentioned.

Carol F.

Celiac Adult SCD 2 3/4 years.

[Guest guest]

> We'll have been CF 3 weeks tomorrow. I'm not seeing any improvements

> at all.> now I am not sure about it. I will pull it and see how it goes.

>

> I'd like to start rotating fruit, nuts, and casien , still SCD legal.

> I'd like to start with the goat yogurt, slowly of course. I feel like

> if I had a plan written down for what he was eating every 4 days and I

> stuck to it, we could give his body a break from having the same thing

> all the time and he'd have more variety. It would be really hard work

> to have everything I needed on hand, but it would be worth it if it

> meant he could eat more different kinds of foods.

>

Chrystee,

Hopefully the other parents will have some suggestions for you. I know this must

be terribly frustrating. It is my impression that SCD is not implimented as a

rotation diet. There is no mention of animal protein. Are you a vegetarian?

Yogurt is usually not started until even later than 3 weeks, Did you start with

the introductory diet? Have you tried other types of nuts, any vegetables?

Excuse me if you have documented all this before. This does not sound like

balanced diet. Perhaps there are foods not tolerated that you have not

mentioned.

Carol F.

Celiac Adult SCD 2 3/4 years.

[Guest guest]

What about banana? Could that be a problem? Abby had a severe reaction to

it after it was out for a month

and then I put it back in. High in Amines.

Kathy

questioning casein free - long

> We'll have been CF 3 weeks tomorrow. I'm not seeing any improvements

> at all. If anything he's reacting more to peanuts than he used to. It

> seems like everytime he eats it he gets red ears/cheeks. This didn't

> happen preCF because we had more options for meal/snack time so he

> wasn't getting peanuts so often. So, I could take out peanuts totally

> and eggs, but then honestly, I'd be screwed! LOL I feel like the more

> I take out, the more sensitive he is. I think eating the same thing

> all the time is hard on his body and is making him react to things he

> never did before.

>

> He won't eat cooked fruit and hates the nut yogurt. I try to rotate

> different things for snack, but he gets sick of them because there are

> so few. I am not pleased with his stools. They are soft but sticky

> and are every 2 or 3 days instead of every other day. I think he is

> withholding too. I have cut back his honey 75% because he seems to be

> in die-off constantly. He had two great days this week where I saw him

> as he can be under perfect conditions; then something happened and

> he's back to wetting the bed, having bad nightmares, and being more

> difficult in general. He's very impulsive when he's like that and

> it's not unusual for him to hurt one of his friends for no apparent

> reason. I kept him out of school today because he slept so horribly

> last night. I also recently started him on half a Nuthera twice a

> day. At first it seemed to help and he had a BM 2 days in a row, but

> now I am not sure about it. I will pull it and see how it goes.

>

> I'd like to start rotating fruit, nuts, and casien , still SCD legal.

> I'd like to start with the goat yogurt, slowly of course. I feel like

> if I had a plan written down for what he was eating every 4 days and I

> stuck to it, we could give his body a break from having the same thing

> all the time and he'd have more variety. It would be really hard work

> to have everything I needed on hand, but it would be worth it if it

> meant he could eat more different kinds of foods.

>

> Here is what I've worked out so far....

>

> Day 1

> fruit - mango, papaya, pineapple (low sal)

> strawberries, raspberries, fig (high sal)

> casein - goat yogurt and cheddar

> nuts - cashews and hazelnuts

>

> Day2

> fruit - banana (low sal)

> melon, blueberry, cranberry, apricot, cherry, nectarine,

> peach, plum, prune

> Nuts - almonds, brazil nuts

> NO CASEIN

>

> Day 3

> fruit - pear, rhubarb (low sal)

> grape, raisin, apple, kiwi (high sal)

> nuts/seeds - walnuts, pecan, sesame

> NO CASEIN

>

> Day 4

> fruit - lemon, lime, pomegranate, avocado (low sal)

> orange, grapefruit, tangerine (hig sal)

> nuts/seeds - peanuts, pumpkin seeds, macacamia, coconut

> NO CASEIN

>

> This is based on the rotation diet talked about in Dr. Doris Rapp's

> book Is This Your Child? I wouldn't bother rotating any other foods at

> this point. I feel like the casien, fruit and nuts are the biggest

> triggers for Sam. I'm not willing to take out eggs unless some kind

> of testing shows he has a sensitivity to it. I do plan on having some

> provocation/neutralization allergy testing done at some point in the

> future, especially if I can't seem to figure this out on my own!

>

> What are your thoughts on this? I do really think lactose free has

> helped him, but I am not convinced casein free is doing anything for

> him at this point. I had been willing to stick it out for another

> month or two, but this new reaction to PB and impulsivity has really

> got me bummed.

>

>

> Thanks for reading this far!

>

> Chrystee

> Sam, 5 in JUne, behavior/sensory issues, salicylate sensitive

> SCD 3 months, CF 3 weeks

>

>

>

>

> 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]

What about banana? Could that be a problem? Abby had a severe reaction to

it after it was out for a month

and then I put it back in. High in Amines.

Kathy

questioning casein free - long

> We'll have been CF 3 weeks tomorrow. I'm not seeing any improvements

> at all. If anything he's reacting more to peanuts than he used to. It

> seems like everytime he eats it he gets red ears/cheeks. This didn't

> happen preCF because we had more options for meal/snack time so he

> wasn't getting peanuts so often. So, I could take out peanuts totally

> and eggs, but then honestly, I'd be screwed! LOL I feel like the more

> I take out, the more sensitive he is. I think eating the same thing

> all the time is hard on his body and is making him react to things he

> never did before.

>

> He won't eat cooked fruit and hates the nut yogurt. I try to rotate

> different things for snack, but he gets sick of them because there are

> so few. I am not pleased with his stools. They are soft but sticky

> and are every 2 or 3 days instead of every other day. I think he is

> withholding too. I have cut back his honey 75% because he seems to be

> in die-off constantly. He had two great days this week where I saw him

> as he can be under perfect conditions; then something happened and

> he's back to wetting the bed, having bad nightmares, and being more

> difficult in general. He's very impulsive when he's like that and

> it's not unusual for him to hurt one of his friends for no apparent

> reason. I kept him out of school today because he slept so horribly

> last night. I also recently started him on half a Nuthera twice a

> day. At first it seemed to help and he had a BM 2 days in a row, but

> now I am not sure about it. I will pull it and see how it goes.

>

> I'd like to start rotating fruit, nuts, and casien , still SCD legal.

> I'd like to start with the goat yogurt, slowly of course. I feel like

> if I had a plan written down for what he was eating every 4 days and I

> stuck to it, we could give his body a break from having the same thing

> all the time and he'd have more variety. It would be really hard work

> to have everything I needed on hand, but it would be worth it if it

> meant he could eat more different kinds of foods.

>

> Here is what I've worked out so far....

>

> Day 1

> fruit - mango, papaya, pineapple (low sal)

> strawberries, raspberries, fig (high sal)

> casein - goat yogurt and cheddar

> nuts - cashews and hazelnuts

>

> Day2

> fruit - banana (low sal)

> melon, blueberry, cranberry, apricot, cherry, nectarine,

> peach, plum, prune

> Nuts - almonds, brazil nuts

> NO CASEIN

>

> Day 3

> fruit - pear, rhubarb (low sal)

> grape, raisin, apple, kiwi (high sal)

> nuts/seeds - walnuts, pecan, sesame

> NO CASEIN

>

> Day 4

> fruit - lemon, lime, pomegranate, avocado (low sal)

> orange, grapefruit, tangerine (hig sal)

> nuts/seeds - peanuts, pumpkin seeds, macacamia, coconut

> NO CASEIN

>

> This is based on the rotation diet talked about in Dr. Doris Rapp's

> book Is This Your Child? I wouldn't bother rotating any other foods at

> this point. I feel like the casien, fruit and nuts are the biggest

> triggers for Sam. I'm not willing to take out eggs unless some kind

> of testing shows he has a sensitivity to it. I do plan on having some

> provocation/neutralization allergy testing done at some point in the

> future, especially if I can't seem to figure this out on my own!

>

> What are your thoughts on this? I do really think lactose free has

> helped him, but I am not convinced casein free is doing anything for

> him at this point. I had been willing to stick it out for another

> month or two, but this new reaction to PB and impulsivity has really

> got me bummed.

>

>

> Thanks for reading this far!

>

> Chrystee

> Sam, 5 in JUne, behavior/sensory issues, salicylate sensitive

> SCD 3 months, CF 3 weeks

>

>

>

>

> 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]

> > We'll have been CF 3 weeks tomorrow. I'm not seeing any

improvements

> > at all.

Hi Chrystee,

Many of our children have not shown improvement during the first

month because they are still in the process of getting some balance

in their gut. I know it's hard, but please remember - this is a long

road with many challenges. Although many kids show progress within

the first month, many others take a good 6-8 weeks to start showing

some signs of healing.

> > I'd like to start rotating fruit, nuts, and casien , still SCD

legal.

> > I'd like to start with the goat yogurt, slowly of course.

It seems like a good idea to cook all fruits for a while still and it

may be a good idea to start with nut butters before going for flours.

Whole nuts or nut pieces are definetly much further down the road. I

also think it's a good idea to introduce one thing and wait to see

what happens, rather than try to rotate too quickly. Also, most

people who have been CF for a while are trying to wait at least a

couple of months before introducing dairy - what about nut yogurt or

fermented veggies? Do you give probiotics? Have you tried enzymes?

Please forgive me if you've already mentioned these things - I don't

have a very good memory.

> I feel like

> > if I had a plan written down for what he was eating every 4 days

and I

> > stuck to it, we could give his body a break from having the same

thing

> > all the time and he'd have more variety. It would be really hard

work

> > to have everything I needed on hand, but it would be worth it if

it

> > meant he could eat more different kinds of foods.

The truth is, I don't know much about the rotation theories. My guy

has a pretty short list of foods he will eat and couldn't care less

about variety. Although I believe it's important to have balance in

the diet, I'm not sure how important variety really is. Maybe I'm

just missing something...

Hang in there and take care!

son - , 5yo, ASD, SCD 13 months

[Guest guest]

What I meant was, he'd be eating all the same things he is eating

now, lots of meat and veggies and I'd rotate the fruit, nuts and

casein so he wasn't eating all the same things every day.

He eats lots of meat and veggies, but reacts to different fruits and

nuts if he has too much of one kind of thing. I've been rotating

these things very loosely, but feel like I need a more concrete way to

follow what he gets every day.

We weren't previously casein free. Sam has no diagnosis. He has some

behavior/sensory issues that I believe are related to gut issues (and

some are just personality We've been SCD 3 months and I just

recently went casein free

Hope that clarifies things!

Chrystee

Sam

SCD 3 months

> >

> Chrystee,

>

> Hopefully the other parents will have some suggestions for you. I

know this must be terribly frustrating. It is my impression that SCD

is not implimented as a rotation diet. There is no mention of animal

protein. Are you a vegetarian? Yogurt is usually not started until

even later than 3 weeks, Did you start with the introductory diet?

Have you tried other types of nuts, any vegetables? Excuse me if you

have documented all this before. This does not sound like balanced

diet. Perhaps there are foods not tolerated that you have not mentioned.

>

> Carol F.

> Celiac Adult SCD 2 3/4 years.

[Guest guest]

> He eats lots of meat and veggies, but reacts to different fruits and

> nuts if he has too much of one kind of thing. I've been rotating

> these things very loosely, but feel like I need a more concrete way

to

> follow what he gets every day.

Well, that clarifies a lot for me! Now I understand your question - I

think?? What about a calendar system? I printed off pages from

Microsoft Outlook calendar feature on my computer. You can choose to

print a week at a glance or a month at a glance. When I'm trying to

keep close track of things, I use the weekly pages. When I'm just

trying to keep track of something specific (like trophies) - I use

the month per page. I keep them in a 3-ring binder - where I also

keep recipes and cold remedies, etc. that I've printed from the web

and list.

Is that a little closer to what you were asking? :-)

son - 5yo ASD, SCD 13 months

[Guest guest]

The problem I have with taking more stuff out is, I keep taking stuff

out and he's still reacting. I don't want to keep pulling food since

I think it's exacerbating his food sensitivities by always having the

same food everyday. I pulled casein 3 weeks ago after he had a pretty

bad day at school and home thinking it might be he big " one " that was

doing the most damage.

We were doing great on Feingold only until Dec. when he had a round of

injected antibiotics. I'm sure it caused an overgrowth of yeast. He

never reacted to banana, peanut butter, corn, eggs.....never. He was

though very sensitive to cheese and was easily constipated. In Feb.

(preSCD) when taking corn out didn't work, I had a decision to make.

I decided to give SCD a try. 3 weeks ago I took out casein. Nothing.

I've thought about pulling eggs but am very wary of it since I keep

pulling food with no real sign of any of it working.....see where I'm

coming from?

We have been SCD legal for 3 months now and casein free for 3 weeks. I

expect to see some improvement but I do not. Sam is having memory and

learning problems at school since starting SCD. His agressive behavior

and emotional outburst have decreased since starting Feingold in Oct.

03 but are ocurring more often than the average kid and he still

disrupts class and hurts his friends more than I would like.

I am hoping that by rotating the foods that I see him react most to

(fruits and nuts, perhaps casein) he will have more variety but fewer

reactions. I like the idea of staying on SCD, I want to, but I don't

think I can if we can't do casein, eggs, peanuts, *and* high

salicylate/phenolic fruits and veggies all at the same time. I know

lots of you do. I know it's possible. But I also know that Sam and I

would be completely miserable and it just wouldn't last very long.

Chrystee

Sam, 5 in June, behavior/sensory issues, salicylate sensitive

SCD 3 months, CF 3 weeks

> What about banana? Could that be a problem? Abby had a severe

reaction to

> it after it was out for a month

> and then I put it back in. High in Amines.

> Kathy

>

[Guest guest]

Kinda.....

I have a plan, but just wondered you guys' take on adding casein back

in in the form of goat yogurt (and cheese later) very slowly and on a

limited basis. I'd do casein on Day 1 say and then he could have it

again when Day 1 came around again. I'd be working with a 4 day

rotation so he wouldn't be getting casein on Days 2,3, or 4.

It would open his diet up alot without overloading him with casein.

chrystee

Sam

SCD 3 months, CF 3 weeks

>

> Well, that clarifies a lot for me! Now I understand your question - I

> think?? What about a calendar system? I printed off pages from

> Microsoft Outlook calendar feature on my computer. You can choose to

> print a week at a glance or a month at a glance. When I'm trying to

> keep close track of things, I use the weekly pages. When I'm just

> trying to keep track of something specific (like trophies) - I use

> the month per page. I keep them in a 3-ring binder - where I also

> keep recipes and cold remedies, etc. that I've printed from the web

> and list.

>

> Is that a little closer to what you were asking? :-)

>

>

> son - 5yo ASD, SCD 13 months

[Guest guest]

Kinda.....

I have a plan, but just wondered you guys' take on adding casein back

in in the form of goat yogurt (and cheese later) very slowly and on a

limited basis. I'd do casein on Day 1 say and then he could have it

again when Day 1 came around again. I'd be working with a 4 day

rotation so he wouldn't be getting casein on Days 2,3, or 4.

It would open his diet up alot without overloading him with casein.

chrystee

Sam

SCD 3 months, CF 3 weeks

>

> Well, that clarifies a lot for me! Now I understand your question - I

> think?? What about a calendar system? I printed off pages from

> Microsoft Outlook calendar feature on my computer. You can choose to

> print a week at a glance or a month at a glance. When I'm trying to

> keep close track of things, I use the weekly pages. When I'm just

> trying to keep track of something specific (like trophies) - I use

> the month per page. I keep them in a 3-ring binder - where I also

> keep recipes and cold remedies, etc. that I've printed from the web

> and list.

>

> Is that a little closer to what you were asking? :-)

>

>

> son - 5yo ASD, SCD 13 months

[Guest guest]

> I have a plan, but just wondered you guys' take on adding casein

back

> in in the form of goat yogurt (and cheese later) very slowly and on

a

> limited basis. I'd do casein on Day 1 say and then he could have it

> again when Day 1 came around again. I'd be working with a 4 day

> rotation so he wouldn't be getting casein on Days 2,3, or 4.

>

> It would open his diet up alot without overloading him with casein.

Well, I guess I'm still not getting it. The way we usually introduce

yogurt - and this is regarding the introduction of the probiotics in

the yogurt, not necessarily the casein - is that we start out with

1/4 teaspoon of yogurt on day one, then skip a day and watch for

reaction. Then give 1/4 teaspoon again and build up day by day adding

a tiny amount based on the child's reaction. I don't think there has

every been a mention of every four days...

I think with SCD, the yogurt is meant to be given more on a daily, or

at least a few times a week, basis - for the introduction of good

bacteria to the gut. I guess I'm just not the person to answer this

question.... Sheila, Jody??

son - 5yo ASD, SCD 13months

[Guest guest]

Chrystee,

I believe that you mentioned going to see a DAN! doctor, right?

Did you do an OAT test? What did it show?

Have you tried enzymes?

Have you tried him on any of the supplements that help our ASD

kids? TMG, folinic acid, B6, magnesium, B12 shots, taurine,

CLO, MSM?

Does he have environmental allergies? Is it possible that there

is something in his school room that is triggering allergic

reactions?

(A long time ago when was in preschool, he came home

one day with hives all over him. I called his teacher and she

assured me that nothing had changed... I talked to her for quite a

while before she remembered that a live Christmas tree had

been put in the gymnasium. I am very allergic to pine trees. I

asked for the tree to be moved so that he would not walk past it

and the hives did not return the next day at school.)

A long story to say.....that the teachers could be using cleaning

products that make him go nuts. They could be spraying

pesticides, the teacher could be wearing a perfume, etc. I am

not trying to drive you crazy with " what ifs " ... but it doesn't seem to

me to be totally diet related. Although it could be. I would just

hate to see you put yourself and him through this rotation and

removal of foods it if it actually an environmental trigger.

Does he act this way at home or are the negative behaviors

usually just at school? What happens over school breaks, does

he stay on an even keel and then start having ups and downs

when he returns to school?

Does the school playground have wood chips? Is the

playground equipment wood? 's preschool had both and

he tested positive for arsenic on the blood elements test.

I guess I am no being much help here. I guess what I am

suggesting is to really consider other possibilities before

restricting his diet further.

Jody

mom to -5 and -7

SCD 15 months

[Guest guest]

Hi Chrystee,

> > I have a plan, but just wondered you guys' take on adding casein

> back

> > in in the form of goat yogurt (and cheese later) very slowly and

on

> a

> > limited basis. I'd do casein on Day 1 say and then he could have

it

> > again when Day 1 came around again. I'd be working with a 4 day

> > rotation so he wouldn't be getting casein on Days 2,3, or 4.

> >

> > It would open his diet up alot without overloading him with

casein.

> Well, I guess I'm still not getting it. The way we usually

introduce

> yogurt - and this is regarding the introduction of the probiotics

in

> the yogurt, not necessarily the casein - is that we start out with

> 1/4 teaspoon of yogurt on day one, then skip a day and watch for

> reaction. Then give 1/4 teaspoon again and build up day by day

adding

> a tiny amount based on the child's reaction. I don't think there

has

> every been a mention of every four days...

>

> I think with SCD, the yogurt is meant to be given more on a daily,

or

> at least a few times a week, basis - for the introduction of good

> bacteria to the gut. I guess I'm just not the person to answer

this

> question.... Sheila, Jody??

Did you use any of the yogurt before going casein free? (The yog is

lactose free) Are you or have you used any probiotic? Are you using

any supplements?

For those who are extremely nervous or who have had severe reactions

to dairy items in the past we generally recommend start with 1/4 tsp

first day and skip two days then try 1/4 tsp again on the fourth

day. I'd be concerned that if you wait too long you won't get a

clear indication if it is helping or if he is reacting to some

outside (environmental etc.) force.

But generally we recommend the 1/4 tsp first day skip a day and on

day three try 1/4 tsp again. If all goes well (die-off is generally

expected) and if there is positive signs and maybe negative signs

then increase the amount slowly and build up.

Have you considered enzymes?

I really suggest keeping a food journal and (please don't throw

things at the computer) are all fruits and veggies peeled and

cooked? If he is still having mushy stools he likely isn't ready

for raw.

It sounds like you need to back up on the food and instead of

rotaing foods slowly reintroduce one at a time to get a better idea

what is tolerated.

Sheila UC, 20 years -- in remission after 39 mos SCD

mom of SCD 24 mos

[Guest guest]

Hi Chrystee,

> > I have a plan, but just wondered you guys' take on adding casein

> back

> > in in the form of goat yogurt (and cheese later) very slowly and

on

> a

> > limited basis. I'd do casein on Day 1 say and then he could have

it

> > again when Day 1 came around again. I'd be working with a 4 day

> > rotation so he wouldn't be getting casein on Days 2,3, or 4.

> >

> > It would open his diet up alot without overloading him with

casein.

> Well, I guess I'm still not getting it. The way we usually

introduce

> yogurt - and this is regarding the introduction of the probiotics

in

> the yogurt, not necessarily the casein - is that we start out with

> 1/4 teaspoon of yogurt on day one, then skip a day and watch for

> reaction. Then give 1/4 teaspoon again and build up day by day

adding

> a tiny amount based on the child's reaction. I don't think there

has

> every been a mention of every four days...

>

> I think with SCD, the yogurt is meant to be given more on a daily,

or

> at least a few times a week, basis - for the introduction of good

> bacteria to the gut. I guess I'm just not the person to answer

this

> question.... Sheila, Jody??

Did you use any of the yogurt before going casein free? (The yog is

lactose free) Are you or have you used any probiotic? Are you using

any supplements?

For those who are extremely nervous or who have had severe reactions

to dairy items in the past we generally recommend start with 1/4 tsp

first day and skip two days then try 1/4 tsp again on the fourth

day. I'd be concerned that if you wait too long you won't get a

clear indication if it is helping or if he is reacting to some

outside (environmental etc.) force.

But generally we recommend the 1/4 tsp first day skip a day and on

day three try 1/4 tsp again. If all goes well (die-off is generally

expected) and if there is positive signs and maybe negative signs

then increase the amount slowly and build up.

Have you considered enzymes?

I really suggest keeping a food journal and (please don't throw

things at the computer) are all fruits and veggies peeled and

cooked? If he is still having mushy stools he likely isn't ready

for raw.

It sounds like you need to back up on the food and instead of

rotaing foods slowly reintroduce one at a time to get a better idea

what is tolerated.

Sheila UC, 20 years -- in remission after 39 mos SCD

mom of SCD 24 mos

[Guest guest]

Hi Chrystee,

> > I have a plan, but just wondered you guys' take on adding casein

> back

> > in in the form of goat yogurt (and cheese later) very slowly and

on

> a

> > limited basis. I'd do casein on Day 1 say and then he could have

it

> > again when Day 1 came around again. I'd be working with a 4 day

> > rotation so he wouldn't be getting casein on Days 2,3, or 4.

> >

> > It would open his diet up alot without overloading him with

casein.

> Well, I guess I'm still not getting it. The way we usually

introduce

> yogurt - and this is regarding the introduction of the probiotics

in

> the yogurt, not necessarily the casein - is that we start out with

> 1/4 teaspoon of yogurt on day one, then skip a day and watch for

> reaction. Then give 1/4 teaspoon again and build up day by day

adding

> a tiny amount based on the child's reaction. I don't think there

has

> every been a mention of every four days...

>

> I think with SCD, the yogurt is meant to be given more on a daily,

or

> at least a few times a week, basis - for the introduction of good

> bacteria to the gut. I guess I'm just not the person to answer

this

> question.... Sheila, Jody??

Did you use any of the yogurt before going casein free? (The yog is

lactose free) Are you or have you used any probiotic? Are you using

any supplements?

For those who are extremely nervous or who have had severe reactions

to dairy items in the past we generally recommend start with 1/4 tsp

first day and skip two days then try 1/4 tsp again on the fourth

day. I'd be concerned that if you wait too long you won't get a

clear indication if it is helping or if he is reacting to some

outside (environmental etc.) force.

But generally we recommend the 1/4 tsp first day skip a day and on

day three try 1/4 tsp again. If all goes well (die-off is generally

expected) and if there is positive signs and maybe negative signs

then increase the amount slowly and build up.

Have you considered enzymes?

I really suggest keeping a food journal and (please don't throw

things at the computer) are all fruits and veggies peeled and

cooked? If he is still having mushy stools he likely isn't ready

for raw.

It sounds like you need to back up on the food and instead of

rotaing foods slowly reintroduce one at a time to get a better idea

what is tolerated.

Sheila UC, 20 years -- in remission after 39 mos SCD

mom of SCD 24 mos

[Guest guest]

> > He eats lots of meat and veggies, but reacts to different fruits and

> > nuts if he has too much of one kind of thing. I've been rotating

> > these things very loosely, but feel like I need a more concrete way

> to

> > follow what he gets every day.

>

> Well, that clarifies a lot for me! Now I understand your question - I

> think?? What about a calendar system?

Adding to 's suggestion there are excellent tracking and diary

facilities at:

www.fitday.com

Carol F.

Celiac Adult SCD 2 3/4 years.

[Guest guest]

> Chrystee,

>

> I believe that you mentioned going to see a DAN! doctor, right?

> Did you do an OAT test? What did it show?

We only had one consultation with her; she's actually a nurse

practitioner. We have not done any real testing. Although we did have

some blood drawn today, but couldn't get enough for all the tests she

wants to do. I'm not sure I will go back; it is very traumatic for

Sam and he *will not* sit still enough for them to get all the blood

at once. The nurses and DH were having a really hard time holding him

down.

>

> Have you tried enzymes?

We have not. We don't really have the money. I can't rationalize the

expence without knowing for sure that they will work. We have a sample

of No-fenol but haven't noticed that it did anything so far.

>

> Have you tried him on any of the supplements that help our ASD

> kids? TMG, folinic acid, B6, magnesium, B12 shots, taurine,

> CLO, MSM?

I bought some MSM. The DAN practitioner says she likes to do that

last. I've been giving it to him when I remember..... He's also

been on Nuthera for a week or so. I haven't noticed anything different

yet.

>

> Does he have environmental allergies? Is it possible that there

> is something in his school room that is triggering allergic

> reactions?

>

I know pollen is one of them. Claritin is not SCD legal and lately it

hasn't really been doing much to help. I'm sure it could be anything

else too.

>

> Does he act this way at home or are the negative behaviors

> usually just at school? What happens over school breaks, does

> he stay on an even keel and then start having ups and downs

> when he returns to school?

He has a harder time at school, but I think that's more the way he

reacts to other kids. There are a few kids there alot like Sam (very

perceptive and pesistent.) And two persistent people put together is

not a pretty picture. Plus he's been having these problems all year

so they are all pretty wary of him at this point.

>

> Does the school playground have wood chips? Is the

> playground equipment wood? 's preschool had both and

> he tested positive for arsenic on the blood elements test.

It's in the middle of a bunch of pine trees actually, so I don't doubt

that that's part of it. I do want to go to an environmental allergist

to get him treated for this, but again, we can't afford to do

everything at once.

>

> I guess I am no being much help here. I guess what I am

> suggesting is to really consider other possibilities before

> restricting his diet further.

See, I was thinking a rotation diet would give him more variety, not

restrict it. He could eat as much PB as he wants on PB day, instead

of only being allowed PB once a day. I don't want to take more out, I

just want to rotate it so he's not getting the same thing every day

and his body gets a break.

Chrystee

Sam

SCD 3 months, casein free 3 weeks

[Guest guest]

>

>

> Did you use any of the yogurt before going casein free? (The yog is

> lactose free) Are you or have you used any probiotic? Are you using

> any supplements?

Yes. For the first 2 months of SCD , were not Casein free. We started

yogurt early because we had never been CF. Once in awhile I remember

to give him a legal acidophilus capsule... He has 1/2 a Nuthera

twice a day. Right before we went CF, he had stopped eating the

yogurt. He does not like the nut yogurt at all.

>

> I really suggest keeping a food journal and (please don't throw

> things at the computer) are all fruits and veggies peeled and

> cooked? If he is still having mushy stools he likely isn't ready

> for raw.

I have one. I don't see any pattern. His veggies are all cooked. I

have added in a raw, peeled, deseeded pear now and then and some melon

this week. He will not eat cooked fruit. His stools are not mushy.

They are sticky and soft. They stay together after flushing.

>

> It sounds like you need to back up on the food and instead of

> rotaing foods slowly reintroduce one at a time to get a better idea

> what is tolerated.

But how far do I back up? Back to intro, that was two days of Hell.

He didn't react to eggs when I added them back in then, nor did he

react to casein when we added it in. I guess I am a bit frustrated

because of our monetary circumstances. If I could afford to have all

the tests and treatments that I want to have done done, this process

would be a Hell of alot easier and faster!!!

Chrystee

Sam

SCD 3 months, CF three weeks

[Guest guest]

Hi Chrystee,

> > Did you use any of the yogurt before going casein free? (The

yog is

> > lactose free) Are you or have you used any probiotic? Are you

using

> > any supplements?

>

> Yes. For the first 2 months of SCD , were not Casein free. We

started

> yogurt early because we had never been CF. Once in awhile I

remember

> to give him a legal acidophilus capsule... He has 1/2 a Nuthera

> twice a day. Right before we went CF, he had stopped eating the

> yogurt. He does not like the nut yogurt at all.

> > I really suggest keeping a food journal and (please don't throw

> > things at the computer) are all fruits and veggies peeled and

> > cooked? If he is still having mushy stools he likely isn't

ready

> > for raw.

>

> I have one. I don't see any pattern. His veggies are all cooked.

I

> have added in a raw, peeled, deseeded pear now and then and some

melon

> this week. He will not eat cooked fruit. His stools are not

mushy.

> They are sticky and soft. They stay together after flushing.

Although the stools may not be perfect, it is very good that they

stay together after flushing. From your descriptions it sounds as

if he was doing better when he had the yogurt. And that the past

three casein free weeks are making things worse. There are natural

enzymes present in the yogurt, which should help him with digestion.

Rotating yogurt: I don't think you need to skip all the days in

between (again from your description). If you want build up slowly

so that you are sure that there is no reaction, but you may see

improvement sooner if you are getting the probiotic and enzyme

effect from the yogurt if you have it more often. Especially since

he never seemed to have any trouble with casein in the past. If you

want to slowly increase it start with some on the first day (1/4

tsp) skip a day then on day three another 1/4 tsp. If all is well

increase it steady and slowly not skipping any more days until you

are at a good daily amount.

> > It sounds like you need to back up on the food and instead of

> > rotaing foods slowly reintroduce one at a time to get a better

idea

> > what is tolerated.

> But how far do I back up? Back to intro, that was two days of

Hell.

> He didn't react to eggs when I added them back in then, nor did he

> react to casein when we added it in. I guess I am a bit frustrated

> because of our monetary circumstances. If I could afford to have

all

> the tests and treatments that I want to have done done, this

process

> would be a Hell of alot easier and faster!!!

You probably don't need to back up to the intro but if he getting a

bit constipated youu need to cut out the raw fruit (and raw

veggies). For cooked fruit ideas you can cook apples, pears etc

and freeze them into popsicles or make them into a sorbet type ice

cream (with a blender or food processor).

Sheila UC, 20 years -- in remission after 39 mos SCD

mom of SCD 24 mos