Hi Jerry,

 

I'm afarid that I have to agree with Irena, this is a support group and whilst I admire your quest to dig deeper I fear that we are going to deep.

 

I have been a diagnosed Coeliac for six years, I don't feel that much better than I did on diagnosis but I stick to the diet and try to accept my illness and that I cannot change the world.

 

All I would say is that we all have the same problems in common and that is why we are on this board.....for support not constant bickering and debate...we either accept people's opinions or not but let's all try to respect them. Anna , Pippa and Nemo have all made very valuable contributions and we can all draw our own conclusions..but let's move on please.

 

A similar debate was thrashed out this summer and I believe 4 members of this group left as I'm sure you will remember.

 

With best wishes , Steve----- Original Message -----

From: jerry

To: UK-Coeliac@yahoogroups.com

Sent: Tuesday, November 01, 2005 3:58 PM

Subject: [UK-Coeliac] Re: Wheat intolerance as well

Hi Irena,
  I only mentioned the group because Hazel made this post this morning
>>>Does anyone know of any good sites which will help?<<<

Why do coeliacs object so much to being told that food has gluten in
it? there seems to be this very odd mentality where coeliacs prefer
food that isnt glutenfree to be called glutenfree, than to face the
truth.I can not help being a coeliac who is intolerent to gluten and
made ill by it.

You have made it blatantly clear that complying with codex is much
more of an issue to you than the well being of coeliacs, so I will
bear this in mind before posting on here again, you will be pleased
to know.
So thanks Irena.
    Jerry





--- In UK-Coeliac@yahoogroups.com, Irena <gloriabo28@y...> wrote:
>
> Hi Jerry,
> you have already stated the opening of the new group
> several times in the past few weeks, so I believe we
> have all seen it. Thank you, it's a great idea.
>
> Without wanting to do so, I must react to the
> permanent and wholeharted stating that gf is not gf,
> because we have already been through this a few months
> ago, and some of the members of the group left, and
> others withdrew from this discussion: I am not a
> person who likes extremes, therefore I do not like
> revolutions even if I am a super-sensitive.
> If a definition of gf is in official documents stated
> as <20pm, I will respect it and not stirr it on a
> group which prouds itself as supportive, which is how
> I understand this group.
> I am speaking as a member whose life was saved once by
> this group members (excuse the subjectivity), and if I
> had seen at the time so much discussion, I would never
> have had the courage to ask what bothered me.
> What I am trying to say is, that this is a group for
> support, not endless discussion on "the purpose of the
> universe", although I admire the need to "dig deeper"
> and know more about all this, I am affraid that with
> these kind of heathed topics, we don't help anyone...
>
> @ anna, pippa and jax: I understand all viewpoints,
> and have been reading all your postings for some time
> now, I believe that basically, you agree in your
> standings, perhaps it's only the way they are stated
> is a misunderstanding :)
> humlby stating her personal opinins,
> Irena.
>
> --- jerry <j8hrt@y...> wrote:
>
> > Hi Hazel heres a link to a group for supersensitive
> > coeliacs
> > 
> > http://health.groups.yahoo.com/group/GlutenFreedom/
> >
> > I asked cuk why so many things in their food list
> > made me ill and I
> > used marmite as am example because marmite has malt
> > and wheat germ
> > extract in it, I pointed out how useful to sensitive
> > coeliacs a
> > reliable food list would be and the reply was that
> > their food
> > directory only flags foods at the top end of codex
> > (200ppm) and that
> > their list is by and large glutenfree!!!
> > unfortunately thats not
> > quite glutenfree enough for me...
> >   Jerry
> >
> > 
> >
> >
> > --- In UK-Coeliac@yahoogroups.com, "Hazel Bailey"
> > <hazel.bailey@t...>
> > wrote:
> > >
> > >
> > > Hi Everyone,
> > >
> > > Having looked at a number of Message Boards I have
> > found on some
> > quite a
> > > negative response to people that have either the
> > ultra-sensitive
> > response to
> > > Gluten or where there is an extra wheat
> > intolerance yet they
> > are "sufferers"
> > > just the same.
> > >
> > > My 2 yr old Louis is very sensitive to wheat, 2
> > jelly babies had
> > him crying
> > > at the weekend with "hurts", though this is "safe"
> > by the Coeliac
> > Society
> > > handbook. Due to the wheat intolerance I cannot
> > follow this book as
> > it does
> > > not detail wheat sugars like glucose syrup,
> > dextrose etc. So what
> > could be
> > > safe for a standard coeliac is not necessarily
> > save for my son
> > (then you add
> > > the milk and soy intolerance.....)
> > >
> > > Does anyone know of any good sites which will
> > help?
> > >
> > > Thanks Hazel
> > >
> > >
> > >
> > >
> > >
> > >
> >
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