Yahoo Fructose Group

[Steph]

Hi Guys

Sure been quiet here lately.

Not sure how many of you follow the Aussie Fructose Malabsorption
Group that swears by Sue Shephard. If you do you'll see I've run into
some issues on that group now too. Guess the groups not really meant
to help those with Fructose Malabsorption but just to guide people on
what Sue Shepherd teaches. Below is the response I sent to Donna
(probably not the greatest response as it was sent in the "heat" of my
frustrations). Since I am now moderated on the group I am sure it
will not make it to the group.

I would like to invite you all to join the Fructose Group I set up and
to add any links and files that you can possiblity have to make it
more information. I know you have worked hard on this group to get
things going and set up and I enjoy the group but I have to be honest
that I prefer Yahoo Groups for discussions ... they just seem easier
to follow. As well this group is geared to more then Fructose
Malabsorption and the group I set up is just for Fructose
Malabsorption.

If any of you are interested I would be happy to have you help me
moderate as this isn't really a thing I wanted to totally take on but
just sort of did it on a whim. I think it would be good to have a
group out there that offers more freedom to different approaches and
gives more diet information then just Sue Shepherd. I have learned a
lot from you guys and know you have worked hard to be informed and
learn.

Please spread the word about the new Fructose Group, maybe we can get
this thing up and rolling, maybe it will be a flop ... don't know till
I try. I will add a link to this group also for those who are
suffering with more then just Fructose Malabsorption.

Hope everyone is doing well.

Stephanie


Copy of message sent to Donna:

Donna

I suggest you check your files a little closer. In the first place I
have never before been warned about anything I have spoken about on
here and to be talked to as if I'm a problem person is not at all
appreciated. But not to worry ... I have no interest in being part of
this group anymore. I have never been warned I have never partaken in
any of the conversations that happened previously but I know I was not
impressed previously with the attitude taken by the moderators here.

I suggest the name of this group be changed to Sue Shephereds Diet
Support Group. You are not open to helping people with FM you are
only open to sticking to Sue Shepherds Diet ... oh wait ... that is
not true either ... only to the part about wheat.

I challenge you to find in the group how many people follow the Sue
Shepherd Diet ... let's see ... how many people:
*can eat 2-3 pieces of fruit per day as in the trial diet
*are able to eat nuts and seeds (as so often is discussed on here
but for some reason those people are not put under moderation)
*can eat Sue's Favourite Chocolate Cake (I for one would not put
that much sugar in my FM children's diets ... and unless Nutella is
something different in Australia my children are not allowed to eat
something so high in sugar
*are able to eat small amounts of high fructose foods (how often
have I read about those who have a diet consisting of only a few foods
- should they be moderated to as they aren't eating enough of what Sue
Shepherd says?)
*can eat the suggested alternative foods (how many times have we
had surveys and discussions showing people can eat no fruits and only
a few vegetables - they should also be moderated as Sue Shepherd has a
pretty big list of okay foods ... which my children can't handle and
in which both my children handle different things even though they
both have FM so they should both be able to eat what Sue Shepherd
says)

Do I need to go on ... there are not all that many discussions that
fall under Sue Shepherd's guidelines. As moderator do you eat exactly
what she says you can or cannot????????????

You lost members the last time we went through an issue like this ...
I hung on then figuring I could work with your narrow mindedness and
worship of Sue Shepherd. This time I'm out of here and I invite
anyone else who has had enough to start new with me at
http://health.groups.yahoo.com/group/fructose_malabsorption/ where we
will be willing to discuss all fructose issues ... including those
with Fructose Malabsorption who CAN eat wheat and sourdough!!

Since I am back on moderation this will probably not meet the group ..
but that's okay, you still get to hear what I have to say. Keep up
the great work, thankful you continue to gain members because each
time this happens you also lose some.

Stephanie (Canada)

[Jo-Anne]

Hi Steph,

It has been really quite lately. I was hoping to hear how Jade & Liz
were doing this year.

Thanks for the link.

This group was started up last year after I had a arguement with the
Aussie Fructose Group because I said the Sue Shephard book sucked as
well as posting other diet guides from Australia. So I know how
inflexible that group can be. I have been on a sue shephard diet plan
- it made me very sick and I was more causious regarding fruit than
the diet required.

Another thing that might interest you is the comment my dietican made
at the Flinder Medical Centre (One of our large Hospitals) at our last
appointment. During the fructose intolerance test, you drink a liquid
of water and fructose, it does not contain fractans thus can not test
for fractan intolerance.

Fractan intolerance can only be tested by an elimination diet.

Kind regards,

Jo-Anne

PS Hope your kids are well.

[Steph]

Hi Jo-Anne

Yes I remember how this started up after the problems there.

Are you interested in joining the new group. It would be geared
towards all ages, not just children as this group is.

I am also looking for a few people to help moderate so that it won't
really be a big "chore" and can sort of run on it's own. I really
hope that it can take off and just do it's own thing.

Right now my biggest challenge is getting word out about a new
group ... and seeing as I'm moderated I can't post the new link on
the old site. Even if the moderators remove it after posted anyone
who reads before the moderator gets to it or gets individual mail will
get the site address and once a few people know about it hopefully it
can take off on it's own. Of course whoever posts the link will
likely be moderated like me ... or maybe banned :)

If you are interested in moderating I'd greatly appreciate it.

Stephanie

P.S. The kids are doing okay ... still lots of challenges, not sure
how much FM related

[Steph]

Hi Jo-Anne

I see you joined the new group. If you are interested in being a
moderator please let me know. It would be great to have someone from
the other side of the world on as well. I don't really know how this
all works, but I know shared moderation is capable ... so I guess I
figure it out as it goes.

By the way ... did you get an e-mail when I approved you as a new
member? Just want to make sure that something is going out
automatically to let you know you are approved.

Stephanie

> > PS Hope your kids are well.- Hide quoted text -
>
> - Show quoted text -

[jadey]

Hi guys!!!

Yay I finally have some free time!!!!

Jo- Anne and Steph u will be so pleased to know that this E-mail just
came through. It is from Donna

This is my last message as owner moderator of fructose malabsorption
Australia, with Hedra, my co-moderator is taking over as owner, so
this comes to you all as a special notice to let you know of my
retirement.

It's been a lot of work since December 06 when I began this group and
it has grown to, at present, 229 members since it's inception! I am
satisfied with what's been achieved here in this time, and I was never
out to win any popularity contests - the job of moderator in a group
will never be an entirely easy task - but I did everything in the
desire for all to get accessible researched information for everyone
to get well from symptoms of FructMal and progress.

Our site has some great info to keep drawing from. May you all
continue to benefit with Hedra at the helm. She's been a great
co-moderator, and the group can only go on to greater heights with her
ownership. I wish her all the very best.

Like I was saying, being owner hasn't been an easy task and it is
unfortunate that I'm leaving after the latest disagreement with a
handful of members, which has coincided with my decision to leave. Bad
timing, I know, but Hedra and I working things before the 'Sourdough'
post (for those know as they get individual e mails or the daily
digest), for her to take on the job. Since around two months before
Christmas I've been battling another condition in an acute phase,
myasthenia gravis, which causes me to experience much fatigue. I have
not as yet come out of that trough, so not having this extra task of
running the group, with all the various duties involved, will
naturally lift some of the burden.

Thank you for all the support, particularly to long term members, all
contributors, all the encouragers and to all the new members who, I
know will get some great help by being a part.

God bless! and good-bye.
Yours faithfully,
Donna




Not sure if u guys would have seen it or not. Well Jaimee finally had
her endoscopy & biopsy on the 6th Feb. She did fine but the tool they
use malfunctioned & they had to use a neonatal tool which does not go
around corners and he had to take the biopsy further up from where he
normally would take it so he said they may need to do it again.
Grrrrrrrrrr. I have got the result for celiacs and that came back
negative but in saying that she really didn't eat enough of it so I
think that's something I will no more of when she is older. I have to
phone the gastro Dr tomorrow to get the rest of the results so I will
keep u posted.

How are all your kids going? I will also join the other group too.

My home computer broke and so i was without it for a few months so
sorry things have been so quite from me. Will fill you in on the
results I get tomorrow. Fingers crossed I get some kind of answer :)
__._,_.___

> > - Show quoted text -- Hide quoted text -

[Steph]

Thanks for the info ... since I am banned I cannot read any the
messages. Very interesting, rather humorous actually ... and
definitely a good thing for the group. I suppose I could just sign up
with the group using a different e-mail address seeing as I have
enough of those anyways ... but I don't think I'm missing a whole lot
right now so it really doesn't matter.

Thanks for joining the group ... any links, recipes, diet plans that
you can add would be great. I can't remember who provided me with
various diets before, but if you guys still have them on your computer
and can add them under the diets file that would save me trying to get
my not-so-cooperative scanner going. Although I will have to get it
figured out again eventually.

Sorry to hear about your computer ... no fun, I don't think I'd
survive without a computer very long.

That is so frustrating with Jaimee's endoscopy. I hope that you do
get some decent results from what they were able to biopsy and are
able to learn a bit more that may help you in treating her. Hopefully
you don't have to go through another endoscopy that would be so unfair
to Jaimee ... poor girl.

Kids here are doing okay. Matthew continues to have flare ups but
we're easier able to track it down to the cause now, which is really
nice as before we had no idea what was going on. I guess getting him
on a more proper diet and formula has allowed his gut to heal well
enough that now if he gets something he shouldn't we see immediate
reaction ... of course we don't know if he's reacting minorly to some
issues, but we see some immediate ones which gives us clear
indications. He is going through a happy, content stage and is eating
great. For a good part of January he went downhill again, crying and
clingy, not happy and not eating the greatest (although still eating a
bit). We enough these good stages but are always waiting for the next
downhill stage and wondering why this happens.

Do you guys notice your little ones bellies are distended or quite
large? We are noticing this more often with Matthew and don't know
whether it is bloating or something else. He is not gaining weigh
well anymore since we managed to decrease his formula intake (from
50oz to 30oz per day), this is surprising and odd considering he's
eating well (in Matthew terms) and more consistently. He gained 0.1kg
in the last 2.5 months ... we go tomorrow for another weighing and
doctor chat. I am not extremely concerned yet as he's at an age where
there growth slows down and he still has gained some height, but on
the charts he's falling off his curve and I just find it very odd
considering he's doing better now.

For Rebecca we are steering more and more away from FM and dealing
more with the depression/emotional end of things. We keep her away
from obvious fructose issues and try to keep her on a lower fructose
intake, but find that it makes no difference if she eats good or not.
We are also beginning to see more and more obvious signs of relation
between stomach pain and emotions. We are waiting for counseling and
further help in the "mental" (hate using that word) area.

The beginning of March I go for a FM test. My symptoms don't all fit
in the FM description but yet some things clearly point that way. I
wouldn't be suprised either way of the test. I also suffer from very
severe TMJ as well as some eye issues (blepheritis and dry eye
syndrome) as well as being tested/looking into Sjorgen's Syndrome. I
would not be surprised at a FM diagnosis as I have a feeling various
things are masking each other and that's why it's been so hard to come
to diagnosis. We'll see what comes of it.

All the best ... I'm still looking for anyone who's willing to co-
moderate the new group. Sorry I keep asking ... just say if you
rather not and I'm fine with that. I just think it's a good idea to
have a few people working together ... although there's really no rush
with only 4 member right now ;) Post a link on your blogs or
whereever you can ... and we'll see how it goes.

Steph

[Liz Clifford]

Hi Girls,

I'm back...will send you a bigger post soon. Has been a busy start to our
year. My father-in-law had a heart attack and bypass surgery. So we have
been very occupied with him. Sorry I have been out of the loop. I will read
all the emails over the next few days.

Other than that we are ok.

Hope you girls are all well.

Liz

[Jo-Anne]

Hi Everyone,

Steph - at this stage I can't committ to being co-moderator for your
group as I now work 8 days a fortnight and am unable to access the web
during work, but I am grateful for the offer. I am happy to help
upload info if you would like and actively participate in group
discussions. Good luck with the FM test fingers crossed that it is
negative, the diet sucks. I hope things improve with Rebecca. I'm
sorry to hear that Mathew isn't gaining weight. Ethan, Chloe's and my
stomach gets distended if we eat something we shouldn't have - it is
actually why I got Chloe tested - hubby just thought she was getting
tubby around the middle, when in fact it was fructose. I sometimes
look like I'm 6 months pregnant after eating the wrong thing.

Jade - it good news that the test are finished. Urr about the tool
they had to use - but at least you don't have to repeat the process -
that would be a whole lot worse. I feel sorry for Donna in the other
group but she did alienate a few people including myself as she wasn't
open to new ideas or old discussions - it take a lot of work to
moderate such a large group as it was.

Liz - I'm sorry to hear about your father-in-law I hope he is feeling
better after the surgery and there isn't any lasting effects with the
heart attack.

As for me we had an appointment with Dr Munt today, he said that
Chloe, Ethan and I will not grow out of our Lactose intolerance, our
ability to digest might improve. Time will tell with the Fructose
Malabsorption it should improve overtime but we will always have to
becareful with our daily fructose load. We are going to have the skin
prick tests done, even if it is negative for milk protein with Chloe
it will not rule out delay milk protein intolerance. It will be a
year at least before we could redo the hydrogen tests but we are
unlikely to go that way unless there is significant improvement. He
also commented that he thinks our Fructose Mal & Lactose Intol is
genentic, that Graham and I must carry a recessive gene, which would
give our children a 1/4 chance of getting it.

Talk to you later,

Jo-Anne

[Steph]

No problem Jo-Anne. I understand. That is why I'm sort of looking
for a co-moderator or two ... I'm not sure I have the time for this
(already cut into my time a bit too much this weekend, but I guess
that's because this all came up unexpected and that's part of getting
started ... never mind the e-mails from Mrs. Donna). Hopefully once
up and running it will not be all that much work.

I received another e-mail today ... interesting change of events.
This one was from the new moderator ... Hedra. She has requested that
we work together, supporting each other. She would guide people who
can tolerate wheat to my group and in turn I could guide people to her
group. In this way we both offer information but there is a bit of
specialty to those who are more sensitive. She definitely sounds like
she'll be a better moderator and someone I can work together with.
She has also said she would like to have me reinstated as a member so
that we can better work together. So we'll see what comes of this.

Steph