Diet Suggestions/Advice Information

[Steph]

Hey All

If I recall correctly this group was started after some issues on the
yahoo fructose malabsorption group on a link or dietary advice sheets
that were posted on the group that not all were in agreement from. I
was wondering if I could get a copy of these sheets. Do they have
various lists of do's and don't and ideas of that assort??

I'm trying to get something together for my dietician as she asked
what diet plan I was following. Well in reality I'm not following any
specific plan, I've been sort of going more by what people on the
support groups do. I have reviewed different plans and taken out
similarties, but mostly they all confuse me because they say so many
different things.

I am also trying to further finetune the diet that we are using by
going over all various diets that are out there and taking the
similarites of that and what you guys are telling me your kids can
handle to try incorporate that into my kids diet. Unfortunately I do
not get results like you guys do where your kids tell you they have a
sore tummy. I have one kid who's sore tummies come quite quickly but
yet there doesn't seem to be any relation to the food that she's
eating as far as we can tell (she goes for Sucrose Testing on Thursday
maybe that will shed some light). I have another kid that is simply
miserable all the time ... we get occasional spurts where he's more
content for several days and then downhill again ... but we've changed
nothing during those times to explain why suddenly good days. So I'm
often at a total loss on what to feed them and so I give them small
amounts of various supposedly okay foods, trying to rotate all the
time so they don't have the same thing in a 3 day span.

All of this we have been doing on our own. We initially seen a
dietician at the beginning with Rebecca but after getting their
information and reading around the internet we sort of did our own
thing as they didn't seem to know enough about FM. We were not under
GI with Rebecca, she was just seeing a pediatrician. She is now being
referred to GI since she is not getting better. But now with Matthew
being diagnosed with FM we have GI dietician as he was under GI and
it seems I'm going to have to help educate them ... or just end up
ignoring them also if they aren't helpful.

Anyways, this is a whole long babble just to ask for a copy of the
diet forms so I can give all the information I've gathered to our
dietician as she would like to review it ... so the more I can send
the better. So if anyone has various information they receive when
diagnosed I'd love to review them.

Thanks,
Steph

[Jo-Anne]

I'll upload them soon for you, plus the recipes that came with it.

[Jo-Anne]

I've uploaded the diet from the Women's & Children's Hospital,
Adelaide Australia, which uses Nancy Kraft, Ihowa guidelines.

Ethan is on a diet of less than 1%, no fruit except for Avocardo,
Lemon Juice, Lime Juice & cranberry sauce.

[Steph]

Thanks Jo-Anne

I remember reading this guide before. I was looking around trying to
find it back today, but then realized it was probably the one that
they took off the Yahoo FM Group. Now I can print it off so I have
it.

I feel like I am forever review the diet guides, reviewing what we're
eating, changing things. I wish we could just get a baseline so I
feel I like I somewhat know what I'm doing. I just feel so lost as it
seems nothing we do works ... and I'm at a loss on what further to
look into. Sometimes I get relaxed because it seems what we're doing
isn't helping anyways so why torture the poor girl with all these
restrictions... then I realize I gotta pull up my socks and toughen up
again, but I feel so bad for Rebecca who sees no results and tries so
hard to be good.

I feel like I'm forever behind the computer looking for ideas,
scratching my head on what to make, what works, how to make Rebecca
feel like she's still getting what the rest of us have. It doesn't
seem fair to make us all eat what she eats, but at the same time it
feels so unfair to eat stuff she likes when she can't have it. This
was not suppose to be so complicated ... she's worse now then when we
started looking into her tummy issues.

Anyways, thanks for the info ... it is helpful for sure.

Steph

[Liz Clifford]

I hear you Steph...when it comes to food I'm at a loss as well. I can't work
it out because regardless of what I give Cooper sticking to the low Fructose
low Sucrose diet it's not working for us. He still gets stomach aches almost
every night and it goes for hours.

I can't work it out....arrrggghhh...I gave cooper cauliflower, zucchini,
little bit of eggplant and he had so much gas and stomach aches. Yet these
are all low frutose veges.

I have two lots of sheets from dieticians, as I did try a second dietitian
in desparation.

I will have to get my father in law to scan them for me...but I will post
them over the weekend.

One refers to Fructose, Lactose and Polyols. It also talks about
Glacto-oligosaccharies...geez that is a mouthful. Anyway basically some of
the foods on the low Fructose list fall into this category and it seems that
it is affecting Cooper.

Like you Steph I wish we could work this out for our kids. It's hard because
I just wonder if we are barking up the wrong tree with the current diet and
diagnosis. I looked at the following links and wondered if our kids have
this going on as well.

I will post the other documents from the dietitians soon. One will already
be similar to Jo-Anne's.

http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

http://www.uptodate.com/patients/content/topic.do?topicKey=~/S6QjVerpW9eT4

Hope things work out soon.

[Jo-Anne]

Hi Steph,

Sorry I haven't replied earlier been caught up at work etc. I know
how you feel about the diets, everyone has their own opinion on what
will work but I think only the child can tell you which one works
better. The hardest times are when you are still trying to find the
base line (in which your child/self are no longer experiencing
symptoms daily. It took us months before this happened with Ethan
(January to September I think). Now we know what he can have on a day
to day basis without getting symptoms and it is much easier picking
the offending item if he is having a reaction (e.g. new item we are
trying or problem ingredient e.g. carrots). Life is a little
simplier.

Now I have to establish a baseline for myself, now that I have had the
fructose test (although I am awaiting offical results). As soon as I
swalllowed the liquid (instantly) for the fructose test I was having
stomach pains which went on for hours. I feel sorry for my son who is
quite fructose intol, to know he probably felt worse than me during
the test.

I'm looking at seeing another dietican, the one the girls use to
establish a baseline for myself as I don't want to be on a diet as
strict as Ethans, especially since I don't eat seafood (except the
occasional battered fish) as I would have even less options of food to
eat.

Jo-Anne

Liz, I'll post a diet for fructose/sucrose free diet later, I found it
when I was looking at recipes yesterday. When do you get the biopsy
results for Cooper?

[Liz Clifford]

Hi Jo-Anne,

I hope all is well with you and the kids. That is terrible about the instant
stomach aches when you did the fructose test. What sort of pain is it? Can
you describe it? Is it more like a cramp or more like a sick feeling?

So are you thinking of an endoscopy for yourself I think you mentioned it in
a post?

We get Cooper's results next Monday the 8th. In the meantime I went out and
bought some inner health plus (probiotic) for him. I gave him a dose on his
cereal but he reacted badly to it. It gave him awful tummy pain and he also
got lots of wind from it...he has been sick for days. I don't know anymore,
everytime I try something it seems to make him worse. I read on the web that
some probiotic's contain inulin and Cooper has a terrible reaction to
inulin.

It's exhausting. I'm sure you understand how I feel. Not many people do. I
feel I'm at the end of my rope at the moment with Cooper. I guess things
will get better eventually...right now it seems like it never will.

Hope work is going well for you.

-----Original Message-----
From: fructose_s...@googlegroups.com
[mailto:fructose_s...@googlegroups.com] On Behalf Of Jo-Anne
Sent: Thursday, 27 November 2008 11:26 PM
To: Children's Fructose, Sucrose or Lactose Malabsorption Group

[Jo-Anne]

Hi Liz,

Did you get the dairy free inner health plus? The normal one
contains
dairy and fructoseolgoin (or something like that). I found that it
didn't help Ethan much considering the cost of it.


I found out today that yes I am fructose malabsorber. Makes me want
to cry. Chloe will also test positive in January - she has the
bloated belly and gassiness now.


With the fructose test you have to drink this sickly sweet glass of
fructose/water. The test gave me an instant continual pain like a
stabbing
pain but it was mild (2-3 on pain scale but constant), gassiness as
well (burping) and I only had 10gm of free fructose (e.g. - no
glucose
to help digest it). But I react differently depending on the food
etc.


It looks like I will get the extended primary care thing that Jade
was
talking about which gives you 5 discounted visits to health care
professionals e.g. seeing a dietician, podiatrist etc - and that each
one of us will get an individual plan. But this will be confirmed on
Monday after the doctor has spoken to Medicare.


Jo-Anne

[Liz Clifford]

Hi Jo-Anne,

I'm so sorry to read that you tested positive for FM. I remember you thought
you had the symptoms. When the doctor told you the results you must have
still been shocked and disappointed. I really can't believe what this year
has thrown at all of us. I'm trying to find a postive here...but remember
this, you are very well informed about the condition, and have a lot of
knowledge about it. You never know you might even write a book about it one
day. I will be the first to buy it. Move over Sue Shepard!!!!!!!!!!!

You mentioned Chloe has bloated belly and is gassy now...do you think that
is due to a certain food?

I did get the dairy free inner health plus, so I can't really work out why
Cooper reacted so bad to it. Just so I can get some peace of mind I will
probably call the company tomorrow and ask them some questions. Then I will
take the bottle of the stuff out the fridge and throw it as hard as I can
into the bin so it smashes into a million pieces...just to take out my
frustrations. :>)

It's interesting you mentioned the type of pain you got with Fructose..a
stabbing pain. When I watch Cooper he reacts like someone is driving a knife
into his stomach and he twists and writhes in pain. It's awful. Now I sort
of understand why.

I'm going to ask about the extended primary care thing as well...next
doctors visit.

Well we all seem to be having such a bad time of it at the moment. I think
we all need a big group hug and a stiff drink.

So here it is HUGGGGGGGGGGGGGGGGGGGG!

-----Original Message-----
From: fructose_s...@googlegroups.com
[mailto:fructose_s...@googlegroups.com] On Behalf Of Jo-Anne
Sent: Monday, 1 December 2008 6:32 PM
To: Children's Fructose, Sucrose or Lactose Malabsorption Group
Subject: [ ] Re: Diet Suggestions/Advice Information

[Jo-Anne]

Hi Liz,

The extended primary care plan is being approved. I have to go to the
doctors office on Sunday and complete the last of the paperwork.

I'm seeing a dietican by the last name of Moore, I think it is
http://www.menuconcepts.com.au/dietitianFAQ.htm.

They have 5 free dietican sessions (so between the 3 of us that will
be 15 per year).

Ethan and I qualify for the extended primary care plan because we both
tested positive to Fructose and Lactose Mal. Chloe is being assessed
on Lactose and Milk Protein Intol with a high risk of Fructose Mal.

I don't think you should have any problem getting one with Fruct Mal
and Sucrose Mal (as well as egg etc).

Hope this helps.

Thanks Jade for bringing it to our attention - one less bill to pay.

Jo-Anne