Food List -- Post 1

[Guest guest]

This is long so I'm breaking it into two parts.

I've been sending this information now for over a year whenever

people ask for it, but I don't know how many people actually stick to

this way of eating.

I know that often my son starts feeling so good that he " forgets " he

has CF, and that's when he gradually slides back to typical American

24-year old man eating (such as only chocolate milk for breakfast,

Mcs for lunch, pizza or Ramen noodles for dinner), but as soon

as he feels inflammation and mucus increasing, he jumps right back on

the nutritional wagon. It's amazing how quickly the problem turns

around.

Anyway, the following is a food, spice and herb list that I compiled

from several sources:

1) The Omega Diet, by Artemis Simpoulus, MD

2) Various books by Dr. Heinerman, medical anthropologist

3) Numerous books excerpts, abstract researches, anecdotes and input

from members of the Crataegus group

4) Information passed by from her conversations with

Estelle Nash, both of Australia. Estelle Nash became a naturopath

many years ago to help her three young children with CF. She devised

a specific food plan; they are apparently now living well and in

their 40's. Sadly, 's young adult son died suddenly in early

2000, never getting the opportunity to receive the omega-3 and other

nutritional treatments his mother's research helped spawn.

I feel it's important to give credit for speaking with

Estelle Nash, so below is quoted directly from one of 's

notes. is referring to Estelle's treatment for Murray

(Estelle's youngest child):

" Her main treatment was Linseed Oil in the form of oil and seeds

every day with lowfat protein. She worked him up to a tablespoon of

oil with half a cup of cottage cheese. She started this at age two.

She had him on ginger and cumerin tablets to reduce inflammation and

she said that olive leaf extract could be used also but she couldn't

get it then. She also put him on calcium sulphate, sodium sulphate,

and silica from Blackmores to clear mucus out of the system. Starting

these off slowly and building up the dose. She also gave him 10,000

mg of Vitamin C in doses throughout the day. "

Keep in mind that people spell and name things differently on

different continents. In the US, linseed oil is typically found in

the furniture and boot polish section, while flaxseed oil is found in

the grocery section.

But flaxseeds and linseeds and flaxseed oil and linseed oil are the

same creatures. Just remember, you must keep flaxseeds, flaxmeal, and

flaxseed oil refrigerated to prevent it from going rancid. (I think I

read somewhere that in the US, linseed oil *is* actually rancid

flaxseed oil--but don't quote me on that.)

And I can't tell you how many times I read 's note, each time

interpreting it as Estelle giving Murray *three separate* ingredients

such as: " calcium sulphate, sodium sulphate, and silica from

Blackmores. " I thought the last product, " silica from Blackmores "

must be a food product, much like blackstrap molasses (which is very

high in sulfur and magnesium, by the way).

Then one day I looked at the sentence and saw it differently. I

wondered whether Blackmores was an Australian company that produces

supplements of the stuff Estelle gave Murray. So I did some web

sleuthing, and now I think that is what meant in her note.

Blackmores produces a product called Celloid Sulphur Compound,

containing sodium sulphate. The company says it " promotes bile flow

which is important for fat and cholesterol metabolism. " This may be

the product Estelle used because it also contains calcium sulphate

and potassium sulphate.

In another note from , she says, " She (Estelle) forcefed her

son with every nut, seed, herb, lentil and supplement she could find

and by the time he was in his late teens he no longer exhibited any

signs of CF. Even the sweat test was normal. They didn't have DNA

tests then. She was asked to talk about this by the local docs and

when she tried to convince them, her theories were dismissed with

disdain. "

(There are a lot of us that can relate...)

In another note, writes, " One of the comments Murray Nash (he

was the sickest) made to me was that he does not ever focus on weight

gain, he ignores weight, he focuses on whether he is well to gauge

whether his body is well or not. He believes weight should be ignored

along with the medical professions obsession with it and will balance

itself when the body is well. He is actually lean, muscular and has a

very nice physique. "

Based upon those scant anecdotes, we (the Crataegus group) started

looking at sulphates, only using the word " sulfur " instead. Sulfur is

a mineral necessary for making proteins (especially hair, skin, and

muscles), and it contributes to fat digestion and absorption by

manufacturing bile acids. Sulfur is also the component in insulin

that helps regulate blood sugar.

It felt like our persistence was paying off when one of the moms,

Biltz, one day mentioned in to her doctor that we were

looking at MSM as a means of getting sulfur. Actually, was

asking the doctor about DMSO, which is where MSM is derived.

said her doctor told her that normal CFTR is supposed to fold like

a " w " but in CF, it doesn't fold properly -- it misfolds at the

sulfur bond.

I'm not sure where Yahoo will cut this off for lenght, so I'm putting

the rest in another post.

Kim