OT: severe Celiac, CFS and scd... needing advice

[Guest guest]

A bit long, trying to give you the full background:

My sister-in-law has severe celiac disease and severe CFS. She has

been in bed, unable to walk, read, have friends for visits, watch tv,

etc... for TWO years. She was diagnosed with celiac disease at 21 and

tried Gf/Cf diet for a year with little health improvement... and then

her body basically burned out, and she has been in bed ever since.)

We feel that if we could get her digestion normalized, she would be

able to recover faster. She is eating an enternal nutrient food pack

from the hospital. She hasn't eaten real food and tolerates almost

NOTHING. She knows that she doesn't tolerate this food pack (it is SOY

based, with polysaccharides, lecithin, dextrose, etc). But, this has

been her only source of nutrition for two years. Last week, she

decided to try to start introducing broths of organic chicken, fish,

calf... with broths of a few vegetables. If she tolerates those, then

we can gradually decrease the hospital liquid pack and increase real

food.

*The Problem: She isn't tolerating the soups. They have been SCD legal

foods, boiled for awhile and served just the juices: spinach broth,

parsley, peas, avocado, red pepper, etc. She drinks just one sip and

reacts immediately with ringing in the ears, feels completely worn

out, her stomach area begins to work overtime and make lots of noise,

gets gas 3 inches above her belly button and gas at her ileum (common

with celiac, so i have read). She believes that the vegetables she has

tried have been too difficult to digest and asked me to give

suggestions based on the SCD introduction list.

*What to start with? I was thinking asparagus, green beans and 4 hour

boiled carrot broth. The problem is that this IgG test she did by York

tests says that she doesnt tolerate most of the vegetables that are at

the beginning stages of SCD. Should we still try them and hope

they dont injure her gut or avoid them and do the things that may be

more advanced but more tolerable, according to the test (for example

garlic and boiled salad).

*Will it help? I am also afraid that switching to easier-to-digest

vegetables may not be enough since she is still drinking the soy and

polysaccharides, thus feeding whatever is causing the gas. She thinks

she tolerates spinach better than red pepper and avocado, so it might

be that starting out with easier-to-digest veggies might be enough so

that she doesnt react SO much.

*Cause of gas? I suggested that maybe she wasnt digesting the

vegetables properly to one of her caregivers, and she disagreed saying

that things like parsley dont give gas and that the gas was most

likely from the organic meat broths. From BTVC, it is clear that gas

comes from bacteria. But if it is possible that her gas is coming from

Pesticides in the non-organic veggies, for example, then she may not

actually have high levels of bacteria in her small intestines. If a

person lacks stomach acid and enzymes to break down meat, could that

cause gas?? Any other possibile causes for the gas? People say that

getting gas from red pepper, onion, and cabbage is normal. Does that

mean that it ISNT bacteria, just a weird chemical reaction releasing

air from a normal body response?

*Good Poo... her poo looks really good. perfect color. NO slime.

really well digested, long and curvy. If she was getting the gas from

the bactiera, wouldnt she have slime build up?

She has a nutritionist helping her, and I believe they are choosing

vegetables based solely on the IgG results, and not on difficulty of

digestion/cellulose or oxalates, phenols, natural glutamates etc

(which i think she also has issues with). So I think I might just give

them the list of easier-to-digest veggies and a list of high phenols,

oxalates and glutamates. She asked me to write up some recipes of

" meat with veggies " broth combinations, but I am also torn about how

much I should step in since there is an expert helping them, you know.

They know I dove deep into SCD, digestion, and celiac research some

months ago. But with an illness as confusing as CFS where nothing in

the body is working normally, I feel a bit at a loss to be able to

suggest something with even 90% confidence that it will work, ya know?

I really would love to see her stop the hospital food cold turkey, but

it is her only source of nutrition at the moment. I feel really torn

about what advice to give her for vegetables if there is a good chance

they wont be tolerated because of the soy. I did tell her that it is

possible she wont be able to tolerate any food because of the soy

influencing the small intestines.

Thanks for ANY insight!!!

-

(Have you guys seen the new research from Japan that shows that soy

has opiate effects on the brain just like casein/gluten?)

scd april 07

[Guest guest]

Hi ,

You are correct. Using the food pack at the same time can prevent

tolerating SCD foods (like the soups and veggies). Before I started

SCD eating onions, cooked or raw caused awful gas pains (similar to

the ones you described across the stomach). Once I stopped the

grains, sugar and other SCD illegals I was fine with onions.

Although she is having good stools I think she has plenty of room for

improvement - others with CFS have reported that the diet helps with

symptoms....but she would have to get on the diet 100% for it to

really make a difference.

Sheila, SCD Feb. 2001, UC23yrs, PCOD 22yrs

mom of and

> A bit long, trying to give you the full background:

> My sister-in-law has severe celiac disease and severe CFS. She has

> been in bed, unable to walk, read, have friends for visits, watch

tv,

> etc... for TWO years. She was diagnosed with celiac disease at 21

and

> tried Gf/Cf diet for a year with little health improvement... and

then

> her body basically burned out, and she has been in bed ever since.)

>

> We feel that if we could get her digestion normalized, she would be

> able to recover faster. She is eating an enternal nutrient food pack

> from the hospital. She hasn't eaten real food and tolerates almost

> NOTHING. She knows that she doesn't tolerate this food pack (it is

SOY

> based, with polysaccharides, lecithin, dextrose, etc). But, this has

> been her only source of nutrition for two years. Last week, she

> decided to try to start introducing broths of organic chicken, fish,

> calf... with broths of a few vegetables. If she tolerates those,

then

> we can gradually decrease the hospital liquid pack and increase real

> food.

>

> *The Problem: She isn't tolerating the soups. They have been SCD

legal

> foods, boiled for awhile and served just the juices: spinach broth,

> parsley, peas, avocado, red pepper, etc. She drinks just one sip and

> reacts immediately with ringing in the ears, feels completely worn

> out, her stomach area begins to work overtime and make lots of

noise,

> gets gas 3 inches above her belly button and gas at her ileum

(common

> with celiac, so i have read). She believes that the vegetables she

has

> tried have been too difficult to digest and asked me to give

> suggestions based on the SCD introduction list.

>

> *What to start with? I was thinking asparagus, green beans and 4

hour

> boiled carrot broth. The problem is that this IgG test she did by

York

> tests says that she doesnt tolerate most of the vegetables that are

at

> the beginning stages of SCD. Should we still try them and hope

> they dont injure her gut or avoid them and do the things that may be

> more advanced but more tolerable, according to the test (for example

> garlic and boiled salad).

>

> *Will it help? I am also afraid that switching to easier-to-digest

> vegetables may not be enough since she is still drinking the soy and

> polysaccharides, thus feeding whatever is causing the gas. She

thinks

> she tolerates spinach better than red pepper and avocado, so it

might

> be that starting out with easier-to-digest veggies might be enough

so

> that she doesnt react SO much.

>

> *Cause of gas? I suggested that maybe she wasnt digesting the

> vegetables properly to one of her caregivers, and she disagreed

saying

> that things like parsley dont give gas and that the gas was most

> likely from the organic meat broths. From BTVC, it is clear that gas

> comes from bacteria. But if it is possible that her gas is coming

from

> Pesticides in the non-organic veggies, for example, then she may not

> actually have high levels of bacteria in her small intestines. If a

> person lacks stomach acid and enzymes to break down meat, could that

> cause gas?? Any other possibile causes for the gas? People say that

> getting gas from red pepper, onion, and cabbage is normal. Does that

> mean that it ISNT bacteria, just a weird chemical reaction releasing

> air from a normal body response?

>

> *Good Poo... her poo looks really good. perfect color. NO slime.

> really well digested, long and curvy. If she was getting the gas

from

> the bactiera, wouldnt she have slime build up?

>

> She has a nutritionist helping her, and I believe they are choosing

> vegetables based solely on the IgG results, and not on difficulty of

> digestion/cellulose or oxalates, phenols, natural glutamates etc

> (which i think she also has issues with). So I think I might just

give

> them the list of easier-to-digest veggies and a list of high

phenols,

> oxalates and glutamates. She asked me to write up some recipes of

> " meat with veggies " broth combinations, but I am also torn about how

> much I should step in since there is an expert helping them, you

know.

> They know I dove deep into SCD, digestion, and celiac research

some

> months ago. But with an illness as confusing as CFS where nothing in

> the body is working normally, I feel a bit at a loss to be able to

> suggest something with even 90% confidence that it will work, ya

know?

>

> I really would love to see her stop the hospital food cold turkey,

but

> it is her only source of nutrition at the moment. I feel really torn

> about what advice to give her for vegetables if there is a good

chance

> they wont be tolerated because of the soy. I did tell her that it is

> possible she wont be able to tolerate any food because of the soy

> influencing the small intestines.

>

>

> Thanks for ANY insight!!!

>

> -

> (Have you guys seen the new research from Japan that shows that soy

> has opiate effects on the brain just like casein/gluten?)

> scd april 07

>

[Guest guest]

Thanks, Sheila! Just needed that confirmation. I really think theres

too much bacterial stuff going on for us to think that the gas is

just a fluke (i just remembered that her OAT showed elevated bacteria

levels).

Thanks again!

-

[Guest guest]

Hi ,

Has she been tested for worms and protozoa parasites? They cause severe food

reactions and usually people with no health improvement have loads of bugs in

their gut. Because her immune system is not working well the parasites tend to

" take over " .

Beth

UC 25+years

OT: severe Celiac, CFS and scd... needing advice

A bit long, trying to give you the full background:

My sister-in-law has severe celiac disease and severe CFS. She has

been in bed, unable to walk, read, have friends for visits, watch tv,

etc... for TWO years. She was diagnosed with celiac disease at 21 and

tried Gf/Cf diet for a year with little health improvement... and then

her body basically burned out, and she has been in bed ever since.)

We feel that if we could get her digestion normalized, she would be

able to recover faster. She is eating an enternal nutrient food pack

from the hospital. She hasn't eaten real food and tolerates almost

NOTHING. She knows that she doesn't tolerate this food pack (it is SOY

based, with polysaccharides, lecithin, dextrose, etc). But, this has

been her only source of nutrition for two years. Last week, she

decided to try to start introducing broths of organic chicken, fish,

calf... with broths of a few vegetables. If she tolerates those, then

we can gradually decrease the hospital liquid pack and increase real

food.

*The Problem: She isn't tolerating the soups. They have been SCD legal

foods, boiled for awhile and served just the juices: spinach broth,

parsley, peas, avocado, red pepper, etc. She drinks just one sip and

reacts immediately with ringing in the ears, feels completely worn

out, her stomach area begins to work overtime and make lots of noise,

gets gas 3 inches above her belly button and gas at her ileum (common

with celiac, so i have read). She believes that the vegetables she has

tried have been too difficult to digest and asked me to give

suggestions based on the SCD introduction list.

*What to start with? I was thinking asparagus, green beans and 4 hour

boiled carrot broth. The problem is that this IgG test she did by York

tests says that she doesnt tolerate most of the vegetables that are at

the beginning stages of SCD. Should we still try them and hope

they dont injure her gut or avoid them and do the things that may be

more advanced but more tolerable, according to the test (for example

garlic and boiled salad).

*Will it help? I am also afraid that switching to easier-to-digest

vegetables may not be enough since she is still drinking the soy and

polysaccharides, thus feeding whatever is causing the gas. She thinks

she tolerates spinach better than red pepper and avocado, so it might

be that starting out with easier-to-digest veggies might be enough so

that she doesnt react SO much.

*Cause of gas? I suggested that maybe she wasnt digesting the

vegetables properly to one of her caregivers, and she disagreed saying

that things like parsley dont give gas and that the gas was most

likely from the organic meat broths. From BTVC, it is clear that gas

comes from bacteria. But if it is possible that her gas is coming from

Pesticides in the non-organic veggies, for example, then she may not

actually have high levels of bacteria in her small intestines. If a

person lacks stomach acid and enzymes to break down meat, could that

cause gas?? Any other possibile causes for the gas? People say that

getting gas from red pepper, onion, and cabbage is normal. Does that

mean that it ISNT bacteria, just a weird chemical reaction releasing

air from a normal body response?

*Good Poo... her poo looks really good. perfect color. NO slime.

really well digested, long and curvy. If she was getting the gas from

the bactiera, wouldnt she have slime build up?

She has a nutritionist helping her, and I believe they are choosing

vegetables based solely on the IgG results, and not on difficulty of

digestion/cellulose or oxalates, phenols, natural glutamates etc

(which i think she also has issues with). So I think I might just give

them the list of easier-to-digest veggies and a list of high phenols,

oxalates and glutamates. She asked me to write up some recipes of

" meat with veggies " broth combinations, but I am also torn about how

much I should step in since there is an expert helping them, you know.

They know I dove deep into SCD, digestion, and celiac research some

months ago. But with an illness as confusing as CFS where nothing in

the body is working normally, I feel a bit at a loss to be able to

suggest something with even 90% confidence that it will work, ya know?

I really would love to see her stop the hospital food cold turkey, but

it is her only source of nutrition at the moment. I feel really torn

about what advice to give her for vegetables if there is a good chance

they wont be tolerated because of the soy. I did tell her that it is

possible she wont be able to tolerate any food because of the soy

influencing the small intestines.

Thanks for ANY insight!!!

-

(Have you guys seen the new research from Japan that shows that soy

has opiate effects on the brain just like casein/gluten?)

scd april 07