Re: On my comment regarding mammalian milk

[Guest guest]

In a message dated 4/22/01 10:46:32 PM Eastern Daylight Time, jamm@...

writes:

> Really, if something could possibly help someone, it would be terribly

> selfish not to let them know about it. Some people might be interested in

> this. If you're not, then just forget it was ever mentioned and keep doing

> what is working for your family.

>

>

Honestly at this point these posts are distracting. I spend hours each night

trying to research and learn as we were just diagnosed in March. I rely on

this list to learn and glean as much as I can about GFCF and there is alot of

mail to read. Can't we just get back to GFCF. I love reading about success

stories and sleep difficulties and behavioral challenges also but this is not

that anymore. Sorry really but I am just so overwelmed already.

Debbie

[Guest guest]

I haven't posted to this list for quite a while because, while I think I

will eventually have to try the diet for my daughter, I've been dragging

my feet because of the work it will entail and the change in foods it will

require of her. However, after listening to this discussion for two days,

it

seems to me that the biochemical treatment being discussed is not an

adjunct to the gfcf diet but is in reality diametrically opposed to it,

unless one claims an actual disease requiring restrictions--such as celiac

disease. I don't think there was anything wrong with somebody writing in

and telling us they had changed treatments; not one of us can help but

rejoice with

anybody who finds something that works for their child. I think, though,

that if this is going to become an ongoing discussion, somebody should

start an open list for that purpose rather than including it on this list;

there is nothing to stop any of us from belonging to both lists if we

desire. I will say in all honesty that I am extremely leery of any

program that has a website but really tells nothing about their treatment

plan on the site. I'd much rather get information via a website when

considering something new than call somebody who is going to be all geared

up to convince me over the phone how great their program is! When I look

at something on a website I can take my time to think about it before

committing to making myself known to those who are selling the program.

I also am hesitant about a program for which there appears to be

only one source of dissemination and about which I can find no

discussion on the web (though I admit my search may not yet have

been thorough enough). am willing to allow that this

group may have well-founded reasons for giving out their

information carefully, even if I would prefer it to be more

publicly available. However,

despite my own personal dislike of the lack of information and

concrete sources for information, I am not prejudging that there is

something wrong with it. I would never try to criticize somebody else for

doing something that appears to be working for them. But since apparently

nobody except this group of

biochemists themselves is able to give out information, and then only

on personal inquiry, it seems rather a waste of time to bandy it back and

forth on this list. Instead of starting a list, or perhaps in

preparation for doing so, if one person wanted to call this

program and get information and email those who privately ask to be

included, or even formally present the info received on the gfcf list

along with any sources (websites, books, papers) which we could

consult in researching this therapy, this would facilitate the flow of

information, or maybe

everybody interested would rather do his/her own calling.

I guess one of my primary concerns is that while Tim

and say they will continue to give out information for those who

are interested, they really don't appear to have information to give as

far as ways to track down and verify this information--that's not meant as

a criticism as I'm not a biochemist either and can understand that they

can't give us a full presentation. But since they can't lead us to web

resources or books or published research, I really question the

fruitfulness of continued discussion until they can give out such

information. I do think that if more information is found or becomes

available, the starting of an open list for this therapy would be a good

thing. I think it is good and necessary to discuss on an

ongoing basis

health and nutrition issues so that all on the diet can make sure their

child is getting proper nutrition--though with some of our children that

was an impossibility before the diet, but I think that in such

discussions

it is vital that somebody be able to find and cite a basis for their

claims and concerns that the rest of us can verif--and that includes those

on the gfcf diet as well as those espousing a different approach.

Individual anecdotal experiences are encouraging and helpful, and a

body of anecdotal experienc may even help to direct research, but with any

claims re:

health and nutrition we all need a means of verification, no matter how

much we admire each other's efforts and

respect each other's oppinions.

I also think that having an independent person or group who has no

vested interested in proving one method or the other to be " right "

research this

method and do a report that would be published in print and/or on the web

where all of us can see it would be beneficial. While these two therapies

may appear to be opposed, or while it may be claimed that the use of one

therapy will make the use of the other unnecessary, we all know that ther

is not--and realistically probably never will be--any one therapy that

works for all of our children. In writing thiss, I have no axe to grind

with anybody. I have nothing but respect for thos who have embarked on

this diet on the one hand; on the other hand, as one who is dragging her

feet about implementing it, I can understand the relief and joy one would

feel about not having to maintain such rigorous restrictions.

Cheryl

[Guest guest]

I think I should clarify, after reading my own post, that it's not so much

that I object to this biochemical treatment being discussed on list--we

discuss a lot of things here. I think my concern is with continued

discussion without any increase in information or provision of sources of

information we can research in order to have a beneficial discussion.

Cheryl