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Dietary advice for a child with cystic fibrosis?

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Omega 3 all the way.!!

Dietary advice for a child with cystic fibrosis?

>

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> Hi all,

>

> My friend's little girl has cystic fibrosis. Does anyone have any

> dietary advice? Perhaps coconut oil would be beneficial?

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My niece has CF. Your friend's daughter is going to be on a lot of enzymes.

Just make sure she is seeing (and I'd bet she is) an MD who specializes in

CF.

If you don't know much about CF, it is progressive. Over time the lungs

deteriorate. Also they have digestive problems which cause slow growth, due

to malabsorption. The life expectancy is no more than 40 years, most say 25

years. The oldest person with CF lived to be in their early 40's.

Getting sick is a big deal for a person with CF. A few years ago, a teen

with CF died because she caught a bacterial infection from a tube of

mascara. The doctors didn't know what strain of bacteria it was and didn't

know which antibiotic to give her, so the ones they were giving her, however

strong, were ineffective. Your friend's child is likely to have repeated

courses of very strong IV antibiotics over the course of her life. My niece

has to go into the hospital at least once a year to do this for a few weeks.

So, anything that could boost the child's immune system safely (maybe daily

and continuous doses of Astragalus) might be helpful to help keep her from

getting sick. I would also say consider Garden of Life Primal Defense

probiotics to help keep her gut healthy. This should be checked with her MD

though since it is bacterial.

I know some children who live about 45 minutes from here who have CF who

have reduced their need for enzymes and breathing treatments since taking

Ambrotose daily. It is a product based on the book Sugars That Heal. Their

mother put them on it when they were very young and their condition is much

better than projected for their age.

More info here:

http://wealth.myglycostore.com/

My niece is not on Ambrotose because it is alternative and her parents are

very conventional. I couldn't even go there with them.

Does anyone know of any other glyconutrient product or other sources of

these 8 essential sugars? I know that you can get D-Mannose by itself and

it is available in cranberries and whole leaf aloe, but don't know much

about the other sugars, except that galactose is available from milk which

my son and I can't have due to IgA antibodies.

Connie Bernard

http://www.PandoraPads.com

Organic Cotton Feminine Pads, Tampons, Nursing Pads,

Natural Progesterone Cream, and Children's Supplements.

On-line Discount Voucher: nn242g223

-----Original Message-----

From: Adler

Hi all,

My friend's little girl has cystic fibrosis. Does anyone have any

dietary advice? Perhaps coconut oil would be beneficial?

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> Does anyone know of any other glyconutrient product or other sources of

> these 8 essential sugars? I know that you can get D-Mannose by itself and

> it is available in cranberries and whole leaf aloe, but don't know much

> about the other sugars, except that galactose is available from milk which

> my son and I can't have due to IgA antibodies.

One of the sugars, fucose, in found in medicinal mushrooms, and , IIRC,

in sea veggies. Most people already get plenty of glucose and galactose.

Garden of Life has a product called RM-10 made from 10 fermented

medicinal mushrooms. I'm not pushing the product here, but there

is a list of mushrooms on the bottle that might be helpful or one could

go to their website and possibly see the list.

Beta Glucan is great for the immune system.

I'm a big fan of supplemental enzymes in general. Would proteases

be good for such a child? Bromelain has zero toxicity and its effects

are not limited to the digestive tract. It is extracted from the stem of

the pineapple plant and has been found to promote faster tissue repair.

Real Greek oregano oil seems to have very powerful effects as it contains

carvacrol (among other things) which is a natural solvent. I'm not sure

how well it can be recommended for such a child, but a little goes a

very long way. Seems like it would be a natural for clearing airways, and

it has good antibiotic effects. Some people warn that real oregano oil,

as an edible essential oil, can stress the liver, so that may need to be

taken into consideration.

Darrell

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>> Does anyone know of any other glyconutrient product or other sources of

>> these 8 essential sugars? I know that you can get D-Mannose by itself and

>> it is available in cranberries and whole leaf aloe, but don't know much

>> about the other sugars, except that galactose is available from milk which

>> my son and I can't have due to IgA antibodies.

Has he been tested for gluten intolerance? CD and CF are common

in the same population (Northern Europeans) and both mess

up digestion. Sounds like you've had the IgA test for casein, which

is great!

Coconut oil IS very good, but if even that is too difficult, you

can get MCT from Parillo.com. Start with small doses. Also, meat

is a lot easier to digest if it is raw ... seared steak, sliced and tossed

with olive oil and lemon juice is nice!

http://www.ecfsoc.org/brussels/gastro/g01595.html

We report 11 patients (8 boys, 3 girls) from 4 different countries (Italy, S

Germany, the Netherlands and Belgium) who are affected by both Cystic Fibrosis

(CF) and Coeliac disease (CD). Seven had been suspected of CF by neonatal

screening (BM-test, IRT). All presented with gastro-intestinal symptoms

(diarrhoea, vomiting, fat malabsorption, failure to thrive). Investigations,

including a pilocarpine iontophoresis, revealed CF in all. Although correct

therapy was instituted, digestive problems did not improve to expectations and

all children needed further investigations. As D-xylose test, gliadine

antibodies and other biochemical assays suggested CD, intestinal biopsy was

performed and showed villous atrophy in all. After strict elimination of gluten

from the diet nutritional status improved remarkably and in some there was even

a striking amelioration of pulmonary function tests. Further elaboration of the

gluten intolerance according to the ESPGAN criteria confirmed the tentative

diagnosis of CD, thus proving its coexistence in these CF-patients. No constant

relationship between presence of delta F508 or any other genotype and the CD/CF

combination could be demonstrated.

Heidi Jean

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Connie B. wrote:

>>> about the other sugars, except that galactose is available from milk

which

>>> my son and I can't have due to IgA antibodies.

Heidi S. wrote:

>Has he been tested for gluten intolerance? CD and CF are common

>in the same population (Northern Europeans) and both mess

>up digestion. Sounds like you've had the IgA test for casein, which

>is great!

My niece has CF. We tested for CF by Chorionic villi sample in utero. My dh

is a carrier, but I am not. My son is not a carrier of delta F508. He does

have HLA DQ 3, two copies so he is subject to the more severe form of celiac

disease and gluten intolerance. Incidentally Mediterranean folks have CF

too. In fact the Acadian population has high rates. My dh is descended

from de Medici and is French Acadian.

I am well versed in IgA AB for gluten and casein. You're preachin' to the

choir. LOL

We didn't test my son for the complete stool test because by the time we

really had the extra cash, he had been off of gluten and dairy for 2 years.

It really isn't necessary according to Dr. Fine. There is a clear history of

gluten and casein intolerance for him though from birth in breast milk.

Dh and I have had both gene testing and stool testing for these. I have

elevated antibodies for Gluten, Antitissue Transglutaminase, and casein.

The antitissue transglutaminase ab are the ones that indicate autoimmune

form of the disease. I have that. I have 2 other autoimmune disorders. :-(

I live with them very well though and manage very well with little rx meds

(thyroid only), but mostly good diet. We use coconut oil here liberally.

The only thing we miss is all the fat from dairy. That is hard for us, but

we just make up for it with lots of grassfed beef, good eggs and extra

coconut oil. Some people have commented on occasion that they have never

seen a child so small eat so much meat (or eggs) at once. I just shrug it

off and explain that he doesn't get any protein or fat from milk as most

children do and go on about my business.

Health and nutrition has become something of an obsession for me. (did I

just say that?!)

Connie Bernard

http://www.PandoraPads.com

Organic Cotton Feminine Pads, Tampons, Nursing Pads,

Natural Progesterone Cream, and Children's Supplements.

On-line Discount Voucher: aa242a223

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Connie

>I am well versed in IgA AB for gluten and casein. You're preachin' to the

>choir. LOL

Well I shoulda known that ... but I would lose my Glutenator

title if I didn't even mention gluten! Actually I'm surprised that

it doesn't come up more with CF. Seems that MOST people can't

digest gluten properly, and for someone with impaired digestion,

it would be logical to toss it out of the diet whether or not

the person reacts to it immune-system-wise.

> The only thing we miss is all the fat from dairy. That is hard for us, but

>we just make up for it with lots of grassfed beef, good eggs and extra

>coconut oil. Some people have commented on occasion that they have never

>seen a child so small eat so much meat (or eggs) at once. I just shrug it

>off and explain that he doesn't get any protein or fat from milk as most

>children do and go on about my business.

Yeah, that's a hard one to replace. I did discover recently though,

that coconut oil with a little salt in it works a WHOLE LOT like butter

on bread. Also if you melt it and add raw garlic it is great for dipping

crab into. I haven't tried making " garlic butter " from it but seems like

it would be a nobrainer. I haven't figured out a replacement for cheese

yet, but since I gave it up the smell of it bothers me (stinky feet

maybe? <g>) so that hasn't been an issue. I crave anchovies though,

so I'm learning how to make them, those little cans cost too much.

>Health and nutrition has become something of an obsession for me. (did I

>just say that?!)

Hey, you found the right place! Actually I started doing this " nutrition " thing

as a result of my own kid having problems. Funny how a person can ignore

their OWN health, but goes into full gear if a kid gets sick!

>

Heidi Jean

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How true! That is what kick started my journey!

Catz

> >Health and nutrition has become something of an obsession for me. (did I

> >just say that?!)

>

> Hey, you found the right place! Actually I started doing this " nutrition "

> thing

> as a result of my own kid having problems. Funny how a person can ignore

> their OWN health, but goes into full gear if a kid gets sick!

> >

>

> Heidi Jean

>

>

>

>

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> Important <B>Native Nutrition</B> Addresses

> <UL>

> <LI>Native Nutrition on the <A

> HREF= " / " >WEB</A>

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> Wanita Sears

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