Sorry, I had to just do a catch-up/erase on posts because I've been out of
town for a couple of days, and had over 1200 messages! In any case, I have
a serious question that I wonder if anyone can answer. I've done some
googles, but can't find any sort of menu for what I need.

I was just diagnosed with hemochromatosis.

(link)
http://digestive.niddk.nih.gov/ddise...osis/index.htm

It's an inherited liver disease (both parents have to have the gene) which
means my body considers iron a toxin. In essence, anything I've eaten from
babyhood on, has been stored in my liver and is giving me cirrhosis. (NOTE:
This is NOT alcohol related....)

My doctor has advised me against eating meat, dairy, anything carb related,
no green leafy veggies, no beets, no shellfish, no tuna, no salmon - for at
least a year until they can work on this part of me and start phlebotomy
treatment (almost like dialysis). Meanwhile, as of most likely Monday or
Tuesday, I'm going to have my cancer surgery thus they want me to be fully
healed before they start on the liver thing. If the phlebotomy treatments
don't work, I'll need a liver transplant.

Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
and just looking for anything I can eat. The doctor said my liver enzymes
will NOT go up if I do NOT intake any more iron through food or even, get
this, a cast iron skillet. This is a permanent illness and one I will have
to make immediate and permanent adjustments for.

Any help is appreciated.

kili

kilikini wrote:
> Sorry, I had to just do a catch-up/erase on posts because I've been out of
> town for a couple of days, and had over 1200 messages! In any case, I have
> a serious question that I wonder if anyone can answer. I've done some
> googles, but can't find any sort of menu for what I need.
>
> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>
> It's an inherited liver disease (both parents have to have the gene) which
> means my body considers iron a toxin. In essence, anything I've eaten from
> babyhood on, has been stored in my liver and is giving me cirrhosis. (NOTE:
> This is NOT alcohol related....)
>
> My doctor has advised me against eating meat, dairy, anything carb related,
> no green leafy veggies, no beets, no shellfish, no tuna, no salmon - for at
> least a year until they can work on this part of me and start phlebotomy
> treatment (almost like dialysis). Meanwhile, as of most likely Monday or
> Tuesday, I'm going to have my cancer surgery thus they want me to be fully
> healed before they start on the liver thing. If the phlebotomy treatments
> don't work, I'll need a liver transplant.
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
> and just looking for anything I can eat. The doctor said my liver enzymes
> will NOT go up if I do NOT intake any more iron through food or even, get
> this, a cast iron skillet. This is a permanent illness and one I will have
> to make immediate and permanent adjustments for.
>
> Any help is appreciated.
>
> kili
So sorry to hear about your illness- so little you can eat. Will be
thinking good thoughts for you...

In article >,
"kilikini" > wrote:


> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...osis/index.htm

> Does anyone, possibly, have any ideas on menus?
>
> Any help is appreciated.
>
> kili

Talk to your hospital's dietitian staff. You need a registered
dietitian to help you with this one. About the only person here I'd
trust for information is Cindy Fuller - she's an RD.


-Barb, Mother Superior, HOSSSPoJ
"Maligning an individual says more about you than the one you malign."
http://web.mac.com/barbschaller; blahblahblog 10/13/2006
http://jamlady.eboard.com, Cedric Adams' Hotdish, 10/20/2006

"kilikini" > wrote in
:

> Sorry, I had to just do a catch-up/erase on posts because I've been
> out of town for a couple of days, and had over 1200 messages! In any
> case, I have a serious question that I wonder if anyone can answer.
> I've done some googles, but can't find any sort of menu for what I
> need.
>
> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...tosis/index.ht
m
>
> It's an inherited liver disease (both parents have to have the gene)
> which means my body considers iron a toxin. In essence, anything I've
> eaten from babyhood on, has been stored in my liver and is giving me
> cirrhosis. (NOTE: This is NOT alcohol related....)
>
> My doctor has advised me against eating meat, dairy, anything carb
> related, no green leafy veggies, no beets, no shellfish, no tuna, no
> salmon - for at least a year until they can work on this part of me
> and start phlebotomy treatment (almost like dialysis). Meanwhile, as
> of most likely Monday or Tuesday, I'm going to have my cancer surgery
> thus they want me to be fully healed before they start on the liver
> thing. If the phlebotomy treatments don't work, I'll need a liver
> transplant.
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss
> here and just looking for anything I can eat. The doctor said my
> liver enzymes will NOT go up if I do NOT intake any more iron through
> food or even, get this, a cast iron skillet. This is a permanent
> illness and one I will have to make immediate and permanent
> adjustments for.
>
> Any help is appreciated.
>


That sucks, Kili :-(

Had a quick look and found this.........

http://www.amazon.com/Cooking-Less-I.../dp/1581822235


Keep fighting.


--
Peter Lucas
Brisbane
Australia

'Enjoy today, it was paid for by a veteran'

kilikini wrote:

> Sorry, I had to just do a catch-up/erase on posts because I've been out of
> town for a couple of days, and had over 1200 messages! In any case, I
> have
> a serious question that I wonder if anyone can answer. I've done some
> googles, but can't find any sort of menu for what I need.
>
> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>
> It's an inherited liver disease (both parents have to have the gene) which
> means my body considers iron a toxin. In essence, anything I've eaten
> from
> babyhood on, has been stored in my liver and is giving me cirrhosis.
> (NOTE: This is NOT alcohol related....)
>
> My doctor has advised me against eating meat, dairy, anything carb
> related, no green leafy veggies, no beets, no shellfish, no tuna, no
> salmon - for at least a year until they can work on this part of me and
> start phlebotomy
> treatment (almost like dialysis). Meanwhile, as of most likely Monday or
> Tuesday, I'm going to have my cancer surgery thus they want me to be fully
> healed before they start on the liver thing. If the phlebotomy treatments
> don't work, I'll need a liver transplant.
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss
> here
> and just looking for anything I can eat. The doctor said my liver enzymes
> will NOT go up if I do NOT intake any more iron through food or even, get
> this, a cast iron skillet. This is a permanent illness and one I will
> have to make immediate and permanent adjustments for.
>
> Any help is appreciated.
>
> kili

I'm sorry to hear about your problems.
Tofu.
http://tinyurl.com/y82n2s
Antioxidant properties. The amount of dairy in tofu is minimal compared to
the benefit.
Olives. And olive oil.
http://tinyurl.com/tdcfr
You may have to go vegan. Not such a bad thing, really, once your system
detoxifies from the meat and other stuff. Note: The detox is rough. Prepare
yourself with some detox tea (elderberry extract and some vitamin C in any
form plus some extra vitamin B) and get off the white sugar. Use honey.
http://www.vrg.org/nutrition/protein.htm

Good luck.

-feverish

On Tue, 24 Oct 2006 22:27:50 GMT, "kilikini"
> wrote:

>My doctor has advised me against eating meat, dairy, anything carb related,
>no green leafy veggies, no beets, no shellfish, no tuna, no salmon - for at
>least a year until they can work on this part of me and start phlebotomy
>treatment (almost like dialysis). Meanwhile, as of most likely Monday or
>Tuesday, I'm going to have my cancer surgery thus they want me to be fully
>healed before they start on the liver thing. If the phlebotomy treatments
>don't work, I'll need a liver transplant.
>
>Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
>and just looking for anything I can eat. The doctor said my liver enzymes
>will NOT go up if I do NOT intake any more iron through food or even, get
>this, a cast iron skillet. This is a permanent illness and one I will have
>to make immediate and permanent adjustments for.

Here ya go, sweetie. It doesn't sound like everything on your
doctor's list needs to be completely eliminated. Some should, but
some can be eaten in moderation.

Hope you like fruit and vegetables! And rice. And coffee or tea. And
....
http://www.hemochromatosis.org/Diet.asp

Melba's Jammin' wrote:
> In article >,
> "kilikini" > wrote:
>
>
> > I was just diagnosed with hemochromatosis.
> >
> > (link)
> > http://digestive.niddk.nih.gov/ddise...osis/index.htm
>
> > Does anyone, possibly, have any ideas on menus?
> >
> > Any help is appreciated.
> >
> > kili
>
> Talk to your hospital's dietitian staff. You need a registered
> dietitian to help you with this one. About the only person here I'd
> trust for information is Cindy Fuller - she's an RD.
>
>
Kili,
Barb beet me to it -- you should probably turn this one over to the
pros; Sorry to hear you've got something else to deal with. We're
pulling for you...

...fred

kilikini wrote:
> Sorry, I had to just do a catch-up/erase on posts because I've been out of
> town for a couple of days, and had over 1200 messages! In any case, I have
> a serious question that I wonder if anyone can answer. I've done some
> googles, but can't find any sort of menu for what I need.
>
> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>
> It's an inherited liver disease (both parents have to have the gene) which
> means my body considers iron a toxin. In essence, anything I've eaten from
> babyhood on, has been stored in my liver and is giving me cirrhosis. (NOTE:
> This is NOT alcohol related....)
>
> My doctor has advised me against eating meat, dairy, anything carb related,
> no green leafy veggies, no beets, no shellfish, no tuna, no salmon - for at
> least a year until they can work on this part of me and start phlebotomy
> treatment (almost like dialysis). Meanwhile, as of most likely Monday or
> Tuesday, I'm going to have my cancer surgery thus they want me to be fully
> healed before they start on the liver thing. If the phlebotomy treatments
> don't work, I'll need a liver transplant.
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
> and just looking for anything I can eat. The doctor said my liver enzymes
> will NOT go up if I do NOT intake any more iron through food or even, get
> this, a cast iron skillet. This is a permanent illness and one I will have
> to make immediate and permanent adjustments for.
>
> Any help is appreciated.
>
> kili
>
>
>
I used to know somebody with that condition. At one stage his skin got
rather swarthy (this was about 15 years ago) and he had all sorts of
trouble boarding planes on a trip to Israel because he had a dark beard
and a hawk nose! It took ages to be diagnosed, and the treatment, if I
remember correctly, involved draining a lot of his blood from time to time.

Really, I think you ought to consult a dietitian, this is too serious to
be getting unqualified advice from all and sundry.

Christine

On Tue, 24 Oct 2006 17:44:27 -0500, Melba's Jammin'
> wrote:

>In article >,
> "kilikini" > wrote:

>>
>> Any help is appreciated.
>>
>> kili
>
>Talk to your hospital's dietitian staff. You need a registered
>dietitian to help you with this one. About the only person here I'd
>trust for information is Cindy Fuller - she's an RD.



I concur with this advice. Talk to a dietician: the hospital/clinic
should be able to set this up.

Christine

In article >,
"kilikini" > wrote:

> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
> and just looking for anything I can eat. The doctor said my liver enzymes

> Any help is appreciated.
>
> kili

Carol pointed you to the hemochromatosis foundation. Copy the link and
print the information it provides and take it to your clinical
dietitian. He/she should be able to access your medical records and
know exactly and how specifically YOU should or should not eat. I would
NOT mess around with a self-doctoring program. JMNSHO.
--
-Barb, Mother Superior, HOSSSPoJ
"Maligning an individual says more about you than the one you malign."
http://web.mac.com/barbschaller; blahblahblog 10/13/2006
http://jamlady.eboard.com, Cedric Adams' Hotdish, 10/20/2006

PeterL wrote:
> "kilikini" > wrote in
> :
>
>> Sorry, I had to just do a catch-up/erase on posts because I've been
>> out of town for a couple of days, and had over 1200 messages! In any
>> case, I have a serious question that I wonder if anyone can answer.
>> I've done some googles, but can't find any sort of menu for what I
>> need.
>>
>> I was just diagnosed with hemochromatosis.
>>
>> (link)
>> http://digestive.niddk.nih.gov/ddise...tosis/index.ht
>> m
>>
>> It's an inherited liver disease (both parents have to have the gene)
>> which means my body considers iron a toxin. In essence, anything
>> I've eaten from babyhood on, has been stored in my liver and is
>> giving me cirrhosis. (NOTE: This is NOT alcohol related....)
>>
>> My doctor has advised me against eating meat, dairy, anything carb
>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>> salmon - for at least a year until they can work on this part of me
>> and start phlebotomy treatment (almost like dialysis). Meanwhile, as
>> of most likely Monday or Tuesday, I'm going to have my cancer surgery
>> thus they want me to be fully healed before they start on the liver
>> thing. If the phlebotomy treatments don't work, I'll need a liver
>> transplant.
>>
>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>> loss here and just looking for anything I can eat. The doctor said
>> my liver enzymes will NOT go up if I do NOT intake any more iron
>> through food or even, get this, a cast iron skillet. This is a
>> permanent illness and one I will have to make immediate and permanent
>> adjustments for.
>>
>> Any help is appreciated.
>>
>
>
> That sucks, Kili :-(
>
> Had a quick look and found this.........
>
> http://www.amazon.com/Cooking-Less-I.../dp/1581822235
>
>
> Keep fighting.

Wow, that sounds like a great book, Peter. I may just have to order that
one; thank you!

kili

feverish wrote:
> kilikini wrote:
>
>> Sorry, I had to just do a catch-up/erase on posts because I've been
>> out of town for a couple of days, and had over 1200 messages! In
>> any case, I have
>> a serious question that I wonder if anyone can answer. I've done
>> some googles, but can't find any sort of menu for what I need.
>>
>> I was just diagnosed with hemochromatosis.
>>
>> (link)
>> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>>
>> It's an inherited liver disease (both parents have to have the gene)
>> which means my body considers iron a toxin. In essence, anything
>> I've eaten from
>> babyhood on, has been stored in my liver and is giving me cirrhosis.
>> (NOTE: This is NOT alcohol related....)
>>
>> My doctor has advised me against eating meat, dairy, anything carb
>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>> salmon - for at least a year until they can work on this part of me
>> and start phlebotomy
>> treatment (almost like dialysis). Meanwhile, as of most likely
>> Monday or Tuesday, I'm going to have my cancer surgery thus they
>> want me to be fully healed before they start on the liver thing. If
>> the phlebotomy treatments don't work, I'll need a liver transplant.
>>
>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>> loss here
>> and just looking for anything I can eat. The doctor said my liver
>> enzymes will NOT go up if I do NOT intake any more iron through food
>> or even, get this, a cast iron skillet. This is a permanent illness
>> and one I will have to make immediate and permanent adjustments for.
>>
>> Any help is appreciated.
>>
>> kili
>
> I'm sorry to hear about your problems.
> Tofu.
> http://tinyurl.com/y82n2s
> Antioxidant properties. The amount of dairy in tofu is minimal
> compared to the benefit.
> Olives. And olive oil.
> http://tinyurl.com/tdcfr
> You may have to go vegan. Not such a bad thing, really, once your
> system detoxifies from the meat and other stuff. Note: The detox is
> rough. Prepare yourself with some detox tea (elderberry extract and
> some vitamin C in any form plus some extra vitamin B) and get off the
> white sugar. Use honey. http://www.vrg.org/nutrition/protein.htm
>
> Good luck.
>
> -feverish

Detox tea! GREAT idea! See? I need input like this. Thank you!

kili

Damsel in dis Dress wrote:
> On Tue, 24 Oct 2006 22:27:50 GMT, "kilikini"
> > wrote:
>
>> My doctor has advised me against eating meat, dairy, anything carb
>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>> salmon - for at least a year until they can work on this part of me
>> and start phlebotomy treatment (almost like dialysis). Meanwhile,
>> as of most likely Monday or Tuesday, I'm going to have my cancer
>> surgery thus they want me to be fully healed before they start on
>> the liver thing. If the phlebotomy treatments don't work, I'll need
>> a liver transplant.
>>
>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>> loss here and just looking for anything I can eat. The doctor said
>> my liver enzymes will NOT go up if I do NOT intake any more iron
>> through food or even, get this, a cast iron skillet. This is a
>> permanent illness and one I will have to make immediate and
>> permanent adjustments for.
>
> Here ya go, sweetie. It doesn't sound like everything on your
> doctor's list needs to be completely eliminated. Some should, but
> some can be eaten in moderation.
>
> Hope you like fruit and vegetables! And rice. And coffee or tea. And
> ...
> http://www.hemochromatosis.org/Diet.asp

Thanks, sweetie. You know, if it wouldn't have been for the Fibromatosis
and the Mayo Clinic, I would have never have known about the
hemochromatosis. Blessing in disguise?

kili

merryb wrote:
> kilikini wrote:
>> Sorry, I had to just do a catch-up/erase on posts because I've been
>> out of town for a couple of days, and had over 1200 messages! In
>> any case, I have a serious question that I wonder if anyone can
>> answer. I've done some googles, but can't find any sort of menu for
>> what I need.
>>
>> I was just diagnosed with hemochromatosis.
>>
>> (link)
>> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>>
>> It's an inherited liver disease (both parents have to have the gene)
>> which means my body considers iron a toxin. In essence, anything
>> I've eaten from babyhood on, has been stored in my liver and is
>> giving me cirrhosis. (NOTE: This is NOT alcohol related....)
>>
>> My doctor has advised me against eating meat, dairy, anything carb
>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>> salmon - for at least a year until they can work on this part of me
>> and start phlebotomy treatment (almost like dialysis). Meanwhile,
>> as of most likely Monday or Tuesday, I'm going to have my cancer
>> surgery thus they want me to be fully healed before they start on
>> the liver thing. If the phlebotomy treatments don't work, I'll need
>> a liver transplant.
>>
>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>> loss here and just looking for anything I can eat. The doctor said
>> my liver enzymes will NOT go up if I do NOT intake any more iron
>> through food or even, get this, a cast iron skillet. This is a
>> permanent illness and one I will have to make immediate and
>> permanent adjustments for.
>>
>> Any help is appreciated.
>>
>> kili
That REALLY sucks!
The only suggestion that I have is to get in touch with a good nutritionist.
My thoughts are with you.

Ken.
--
Volunteer your idle computer time for cancer research
http://www.grid.org/services/teams/t...9-D37D5B25B569

My return address is courtesy of Spammotel http://www.spammotel.com/

Melba's Jammin' wrote:
> In article >,
> "kilikini" > wrote:
>
>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>> loss here and just looking for anything I can eat. The doctor said
>> my liver enzymes
>
>> Any help is appreciated.
>>
>> kili
>
> Carol pointed you to the hemochromatosis foundation. Copy the link
> and print the information it provides and take it to your clinical
> dietitian. He/she should be able to access your medical records and
> know exactly and how specifically YOU should or should not eat. I
> would NOT mess around with a self-doctoring program. JMNSHO.

You're most likely right. We have to go back up to the Mayo Clinic in
Jacksonville, FL VERY early Thurs. morning and I'll see if I can speak to a
dietician then. I'm going for more tests for my upcoming surgery,
so.........

I wish you all perfect health because between cancer and this liver thing, I
feel exhausted. Shoots, I'm still under 40, too!!!!!!!!

kili

One time on Usenet, "kilikini" > said:

<snip>

> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>
> It's an inherited liver disease (both parents have to have the gene) which
> means my body considers iron a toxin. In essence, anything I've eaten from
> babyhood on, has been stored in my liver and is giving me cirrhosis. (NOTE:
> This is NOT alcohol related....)

Oh, hon! I'm sorry to hear this, you've already got so much going on,
health-wise. I dearly wish I could say something to help. :-(

> My doctor has advised me against eating meat, dairy, anything carb related,
> no green leafy veggies, no beets, no shellfish, no tuna, no salmon - for at
> least a year until they can work on this part of me and start phlebotomy
> treatment (almost like dialysis). Meanwhile, as of most likely Monday or
> Tuesday, I'm going to have my cancer surgery thus they want me to be fully
> healed before they start on the liver thing. If the phlebotomy treatments
> don't work, I'll need a liver transplant.
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
> and just looking for anything I can eat. The doctor said my liver enzymes
> will NOT go up if I do NOT intake any more iron through food or even, get
> this, a cast iron skillet. This is a permanent illness and one I will have
> to make immediate and permanent adjustments for.
>
> Any help is appreciated.

Well, my first thought is/are eggs. Low to no iron, and they're not
on your no-no list. And oils should be okay. Some mushrooms (shiitakes
are low in iron). That made me think of shirataki noodles because they
have very few carbs, but make sure to get the tofu ones and not the
yam -- the latter have more iron. Speaking of tofu, that might be
okay, along with some bean products, but not green beans.

I've found this to be a good source of nutritional information:

http://www.nutritiondata.com/

And I'll post anything else I can think of. I'm sure you'll get
some great suggestions from the group too. And if you ever need
someone to talk to, I'm here for you, Christy... *hugs*

--
"Little Malice" is Jani in WA
~ mom, Trollop, novice cook ~

"kilikini" > wrote in news:Rmx%g.3752
:

> PeterL wrote:
>> "kilikini" > wrote in
>> :
>>
>>> Sorry, I had to just do a catch-up/erase on posts because I've been
>>> out of town for a couple of days, and had over 1200 messages! In
any
>>> case, I have a serious question that I wonder if anyone can answer.
>>> I've done some googles, but can't find any sort of menu for what I
>>> need.
>>>
>>> I was just diagnosed with hemochromatosis.
>>>
>>> (link)
>>>
http://digestive.niddk.nih.gov/ddise...tosis/index.ht
>>> m
>>>
>>> It's an inherited liver disease (both parents have to have the gene)
>>> which means my body considers iron a toxin. In essence, anything
>>> I've eaten from babyhood on, has been stored in my liver and is
>>> giving me cirrhosis. (NOTE: This is NOT alcohol related....)
>>>
>>> My doctor has advised me against eating meat, dairy, anything carb
>>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>>> salmon - for at least a year until they can work on this part of me
>>> and start phlebotomy treatment (almost like dialysis). Meanwhile,
as
>>> of most likely Monday or Tuesday, I'm going to have my cancer
surgery
>>> thus they want me to be fully healed before they start on the liver
>>> thing. If the phlebotomy treatments don't work, I'll need a liver
>>> transplant.
>>>
>>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>>> loss here and just looking for anything I can eat. The doctor said
>>> my liver enzymes will NOT go up if I do NOT intake any more iron
>>> through food or even, get this, a cast iron skillet. This is a
>>> permanent illness and one I will have to make immediate and
permanent
>>> adjustments for.
>>>
>>> Any help is appreciated.
>>>
>>
>>
>> That sucks, Kili :-(
>>
>> Had a quick look and found this.........
>>
>> http://www.amazon.com/Cooking-Less-Iron-Prepare-
Reasonably/dp/1581822235
>>
>>
>> Keep fighting.
>
> Wow, that sounds like a great book, Peter. I may just have to order
that
> one; thank you!
>


No worries.

Had a bit of a look around and that particular book has been cross
referenced by a couple of HCT sites.

Stay strong :-)


--
Peter Lucas
Brisbane
Australia

'Enjoy today, it was paid for by a veteran'

On Tue, 24 Oct 2006 23:36:17 GMT, "kilikini"
> wrote:

>You're most likely right. We have to go back up to the Mayo Clinic in
>Jacksonville, FL VERY early Thurs. morning and I'll see if I can speak to a
>dietician then. I'm going for more tests for my upcoming surgery,
>so.........

If they are diagnosing you with this, then they should be referring
you to the appropriate people to help deal with this, including
dieticians/nutritionists. This is part of their job.

Christine

One time on Usenet, Christine Dabney > said:
> On Tue, 24 Oct 2006 17:44:27 -0500, Melba's Jammin'
> > wrote:
> >In article >,
> > "kilikini" > wrote:

> >> Any help is appreciated.

> >Talk to your hospital's dietitian staff. You need a registered
> >dietitian to help you with this one. About the only person here I'd
> >trust for information is Cindy Fuller - she's an RD.

> I concur with this advice. Talk to a dietician: the hospital/clinic
> should be able to set this up.

Good idea -- I'm surprised her doctor didn't suggest that...

--
"Little Malice" is Jani in WA
~ mom, Trollop, novice cook ~

Christine Dabney wrote:
> On Tue, 24 Oct 2006 23:36:17 GMT, "kilikini"
> > wrote:
>
>> You're most likely right. We have to go back up to the Mayo Clinic
>> in Jacksonville, FL VERY early Thurs. morning and I'll see if I can
>> speak to a dietician then. I'm going for more tests for my upcoming
>> surgery, so.........
>
> If they are diagnosing you with this, then they should be referring
> you to the appropriate people to help deal with this, including
> dieticians/nutritionists. This is part of their job.
>
> Christine

It may be getting added onto my schedule already, Chris; you never know.
That's how they do things. You think you've only got so much and they give
you an updated list on further appointments. It really wears you out
because what you THINK you only have can change in a matter of minutes.

kili

"kilikini" > wrote in message
.. .
> Sorry, I had to just do a catch-up/erase on posts because I've been out of
> town for a couple of days, and had over 1200 messages! In any case, I
> have
> a serious question that I wonder if anyone can answer. I've done some
> googles, but can't find any sort of menu for what I need.
>
> I was just diagnosed with hemochromatosis.
>
snip>
kili
>
Kili, I am so sorry to hear this. Try to keep thinking positively and only
consider one day at a time. I wish you the best. You've already been
directed to your hospital dietician. Use them.
Janet

Little Malice wrote:
> One time on Usenet, "kilikini" > said:
>
> <snip>
>
>> I was just diagnosed with hemochromatosis.
>>
>> (link)
>> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>>
>> It's an inherited liver disease (both parents have to have the gene)
>> which means my body considers iron a toxin. In essence, anything
>> I've eaten from babyhood on, has been stored in my liver and is
>> giving me cirrhosis. (NOTE: This is NOT alcohol related....)
>
> Oh, hon! I'm sorry to hear this, you've already got so much going on,
> health-wise. I dearly wish I could say something to help. :-(
>
>> My doctor has advised me against eating meat, dairy, anything carb
>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>> salmon - for at least a year until they can work on this part of me
>> and start phlebotomy treatment (almost like dialysis). Meanwhile,
>> as of most likely Monday or Tuesday, I'm going to have my cancer
>> surgery thus they want me to be fully healed before they start on
>> the liver thing. If the phlebotomy treatments don't work, I'll need
>> a liver transplant.
>>
>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>> loss here and just looking for anything I can eat. The doctor said
>> my liver enzymes will NOT go up if I do NOT intake any more iron
>> through food or even, get this, a cast iron skillet. This is a
>> permanent illness and one I will have to make immediate and
>> permanent adjustments for.
>>
>> Any help is appreciated.
>
> Well, my first thought is/are eggs. Low to no iron, and they're not
> on your no-no list. And oils should be okay. Some mushrooms (shiitakes
> are low in iron). That made me think of shirataki noodles because they
> have very few carbs, but make sure to get the tofu ones and not the
> yam -- the latter have more iron. Speaking of tofu, that might be
> okay, along with some bean products, but not green beans.
>
> I've found this to be a good source of nutritional information:
>
> http://www.nutritiondata.com/
>
> And I'll post anything else I can think of. I'm sure you'll get
> some great suggestions from the group too. And if you ever need
> someone to talk to, I'm here for you, Christy... *hugs*

Thank you! I've definitely bookmarked your site, Jani. Any help I can get
is appreciated.

kili

One time on Usenet, unge (Little Malice) said:
> One time on Usenet, "kilikini" > said:

<snip>

> > Any help is appreciated.
>
> Well, my first thought is/are eggs. Low to no iron, and they're not
> on your no-no list.

Ooop, I was looking at egg *whites*, not whole eggs. See, this is why
you need to go to a nutritionist... ;-)

--
"Little Malice" is Jani in WA
~ mom, Trollop, novice cook ~

On Tue, 24 Oct 2006 23:32:18 GMT, "kilikini"
> wrote:

>Detox tea! GREAT idea! See? I need input like this. Thank you!
>
>kili
>

Kili,

You need input from registered dieticians/nutritionists... Not from
everyone here on this newsgroup who thinks they know a bit. Not to
put down everyone he I am certainly not doing that. But they for
the most part are not trained in treating your disease. Find someone
who is.

What we can do, after you have consulted with a professional, is to
help you menu plan within what you can eat. But not until you have
consulted with a person specifically trained to help you.

Christine

"Christine Dabney" > wrote

> On Tue, 24 Oct 2006 23:36:17 GMT, "kilikini"
> > wrote:
>
>>You're most likely right. We have to go back up to the Mayo Clinic in
>>Jacksonville, FL VERY early Thurs. morning and I'll see if I can speak to
>>a
>>dietician then. I'm going for more tests for my upcoming surgery,
>>so.........
>
> If they are diagnosing you with this, then they should be referring
> you to the appropriate people to help deal with this, including
> dieticians/nutritionists. This is part of their job.

And here I have been so puzzled wondering, how is kili getting back
and forth to the Mayo Clinic so fast! Didn't know there was one in
Florida.

Kili, not to sound like a broken record, make sure they have you
speak to a dietician. Just looking around I saw conflicting advice
online. Please take care of yourself, okay?

nancy

On Tue, 24 Oct 2006 23:34:02 GMT, "kilikini"
> wrote:

>You know, if it wouldn't have been for the Fibromatosis
>and the Mayo Clinic, I would have never have known about the
>hemochromatosis. Blessing in disguise?

That's an excellent way of looking at it. This could help many family
members who wouldn't have known they were sick, otherwise.

When life gives you lemons, make lemonade. Unless it has iron in it.

One time on Usenet, Christine Dabney > said:
> On Tue, 24 Oct 2006 23:32:18 GMT, "kilikini"
> > wrote:

> >Detox tea! GREAT idea! See? I need input like this. Thank you!

> You need input from registered dieticians/nutritionists... Not from
> everyone here on this newsgroup who thinks they know a bit. Not to
> put down everyone he I am certainly not doing that. But they for
> the most part are not trained in treating your disease. Find someone
> who is.

As someone who immediately popped up with some food suggestions,
I can say that I do NOT find what you're saying offensive -- on
the contrary, you're exactly right, Christine. I do think she's
planning to take your advice.

> What we can do, after you have consulted with a professional, is to
> help you menu plan within what you can eat. But not until you have
> consulted with a person specifically trained to help you.

I had to do the nutritionist thing when I was diagnosed as a
Type 2 diabetic in Feb of '04. The gal was wonderful, and she had
so much information. I still go back over my notes from that class
once in a while...

--
"Little Malice" is Jani in WA
~ mom, Trollop, novice cook ~

I'm so sorry to hear this.

I agree that you should talk to a licensed dietician (probably two, to
compare notes, is even better).

In the meantime, from glancing at the taboo food list, some vegetarian
cookbooks might point to some options?

And is there any newsgroup that could help?

Just some thoughts,
Kris

kilikini wrote:
> Sorry, I had to just do a catch-up/erase on posts because I've been out of
> town for a couple of days, and had over 1200 messages! In any case, I have
> a serious question that I wonder if anyone can answer. I've done some
> googles, but can't find any sort of menu for what I need.
>
> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>
> It's an inherited liver disease (both parents have to have the gene) which
> means my body considers iron a toxin. In essence, anything I've eaten from
> babyhood on, has been stored in my liver and is giving me cirrhosis. (NOTE:
> This is NOT alcohol related....)
>
> My doctor has advised me against eating meat, dairy, anything carb related,
> no green leafy veggies, no beets, no shellfish, no tuna, no salmon - for at
> least a year until they can work on this part of me and start phlebotomy
> treatment (almost like dialysis). Meanwhile, as of most likely Monday or
> Tuesday, I'm going to have my cancer surgery thus they want me to be fully
> healed before they start on the liver thing. If the phlebotomy treatments
> don't work, I'll need a liver transplant.
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
> and just looking for anything I can eat. The doctor said my liver enzymes
> will NOT go up if I do NOT intake any more iron through food or even, get
> this, a cast iron skillet. This is a permanent illness and one I will have
> to make immediate and permanent adjustments for.
>
> Any help is appreciated.
>
> kili

Christine Dabney wrote:
> On Tue, 24 Oct 2006 23:32:18 GMT, "kilikini"
> > wrote:
>
>> Detox tea! GREAT idea! See? I need input like this. Thank you!
>>
>> kili
>>
>
> Kili,
>
> You need input from registered dieticians/nutritionists... Not from
> everyone here on this newsgroup who thinks they know a bit. Not to
> put down everyone he I am certainly not doing that. But they for
> the most part are not trained in treating your disease. Find someone
> who is.
>
> What we can do, after you have consulted with a professional, is to
> help you menu plan within what you can eat. But not until you have
> consulted with a person specifically trained to help you.
>
> Christine

I go back to the Mayo Clinic Thursday and I'll ask more questions, Chris.
Thanks.

kili

Damsel in dis Dress wrote:
> On Tue, 24 Oct 2006 23:34:02 GMT, "kilikini"
> > wrote:
>
>> You know, if it wouldn't have been for the Fibromatosis
>> and the Mayo Clinic, I would have never have known about the
>> hemochromatosis. Blessing in disguise?
>
> That's an excellent way of looking at it. This could help many family
> members who wouldn't have known they were sick, otherwise.
>
> When life gives you lemons, make lemonade. Unless it has iron in it.

ROFL!

kili <----- still grinning

Nancy Young wrote:
> "Christine Dabney" > wrote
>
>> On Tue, 24 Oct 2006 23:36:17 GMT, "kilikini"
>> > wrote:
>>
>>> You're most likely right. We have to go back up to the Mayo Clinic
>>> in Jacksonville, FL VERY early Thurs. morning and I'll see if I can
>>> speak to a
>>> dietician then. I'm going for more tests for my upcoming surgery,
>>> so.........
>>
>> If they are diagnosing you with this, then they should be referring
>> you to the appropriate people to help deal with this, including
>> dieticians/nutritionists. This is part of their job.
>
> And here I have been so puzzled wondering, how is kili getting back
> and forth to the Mayo Clinic so fast! Didn't know there was one in
> Florida.
>
> Kili, not to sound like a broken record, make sure they have you
> speak to a dietician. Just looking around I saw conflicting advice
> online. Please take care of yourself, okay?
>
> nancy

Thank you, Nancy.

Yes, there are actually *3* main Mayo Clinics in the U.S.; one in AZ one in
MN and one here in FL. There are various satellite clincs as well, but they
aren't the full "campus" clinics that you find between Arizona, Minnesota
and Florida. The drive to Jacksonville is a trek, but that place is
awesome. If anyone has any kind of an ailment, insurance or not, if you can
get to a Mayo Clinic, I HIGHLY regard them. They are truly kind, patient,
efficient, thorough and just darn wonderful

kili

kilikini wrote:
>
> My doctor has advised me against eating meat, dairy, anything carb related,
> no green leafy veggies, no beets, no shellfish, no tuna, no salmon - for at
> least a year
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a loss here
> and just looking for anything I can eat.



Cripes, what's left?

I can't believe the doctor told you all the stuff you COULDN'T eat w/o
referring you to a dietician to tell you what you CAN eat.

As a minimum, ask for a dietary consultation while you are in the
hospital, and make sure the food service knows about the hemo when you
are admitted.

gloria p
befuddled

Craig Welch wrote:
> Old Mother Ashby wrote:
>
>> I used to know somebody with that condition. At one stage his skin
>> got rather swarthy (this was about 15 years ago) and he had all sorts
>> of trouble boarding planes on a trip to Israel because he had a dark
>> beard and a hawk nose!
>
> That's astonishing. I've never known a medical condition that would
> give one a hawk (hook?) nose.
>
Oh, ha bloody ha! Where have you been lately, anyway?

Christine

Puester wrote:
> kilikini wrote:
>>
>> My doctor has advised me against eating meat, dairy, anything carb
>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>> salmon - for at least a year
>>
>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>> loss here and just looking for anything I can eat.
>
>
>
> Cripes, what's left?
>
> I can't believe the doctor told you all the stuff you COULDN'T eat w/o
> referring you to a dietician to tell you what you CAN eat.
>
> As a minimum, ask for a dietary consultation while you are in the
> hospital, and make sure the food service knows about the hemo when you
> are admitted.
>
> gloria p
> befuddled

Yeah, I saw my oncologist today as a last appointment, so I didn't get any
further mention of a dietician - he's the one who discussed my
hemochromatosis, even though I'm seeing him for my fibroidmatosis. Too many
matosis'es in my opinion.

I go take the 5 hour trek back on Thursday; I'll ask more then.

kili

kilikini wrote:
> Sorry, I had to just do a catch-up/erase on posts because I've been
> out of town for a couple of days, and had over 1200 messages!

Major hugs, Christy! What a weird thing.

Jill

kilikini wrote:

> feverish wrote:
>> kilikini wrote:
>>
>>> Sorry, I had to just do a catch-up/erase on posts because I've been
>>> out of town for a couple of days, and had over 1200 messages! In
>>> any case, I have
>>> a serious question that I wonder if anyone can answer. I've done
>>> some googles, but can't find any sort of menu for what I need.
>>>
>>> I was just diagnosed with hemochromatosis.
>>>
>>> (link)
>>> http://digestive.niddk.nih.gov/ddise...osis/index.htm
>>>
>>> It's an inherited liver disease (both parents have to have the gene)
>>> which means my body considers iron a toxin. In essence, anything
>>> I've eaten from
>>> babyhood on, has been stored in my liver and is giving me cirrhosis.
>>> (NOTE: This is NOT alcohol related....)
>>>
>>> My doctor has advised me against eating meat, dairy, anything carb
>>> related, no green leafy veggies, no beets, no shellfish, no tuna, no
>>> salmon - for at least a year until they can work on this part of me
>>> and start phlebotomy
>>> treatment (almost like dialysis). Meanwhile, as of most likely
>>> Monday or Tuesday, I'm going to have my cancer surgery thus they
>>> want me to be fully healed before they start on the liver thing. If
>>> the phlebotomy treatments don't work, I'll need a liver transplant.
>>>
>>> Does anyone, possibly, have any ideas on menus? I'm kind of at a
>>> loss here
>>> and just looking for anything I can eat. The doctor said my liver
>>> enzymes will NOT go up if I do NOT intake any more iron through food
>>> or even, get this, a cast iron skillet. This is a permanent illness
>>> and one I will have to make immediate and permanent adjustments for.
>>>
>>> Any help is appreciated.
>>>
>>> kili
>>
>> I'm sorry to hear about your problems.
>> Tofu.
>> http://tinyurl.com/y82n2s
>> Antioxidant properties. The amount of dairy in tofu is minimal
>> compared to the benefit.
>> Olives. And olive oil.
>> http://tinyurl.com/tdcfr
>> You may have to go vegan. Not such a bad thing, really, once your
>> system detoxifies from the meat and other stuff. Note: The detox is
>> rough. Prepare yourself with some detox tea (elderberry extract and
>> some vitamin C in any form plus some extra vitamin B) and get off the
>> white sugar. Use honey. http://www.vrg.org/nutrition/protein.htm
>>
>> Good luck.
>>
>> -feverish
>
> Detox tea! GREAT idea! See? I need input like this. Thank you!

You're most welcome. Of course, the other people who're telling you to see a
trained professional are right, but it's something you can bring up with
the dietitian when you see him/her. I'd suggest you take notes, both from
here and when you see the dietitian. Don't be afraid to question them. If
they know their stuff, they won't mind. If they do, then find another one.

Good luck

-feverish

Christine Dabney wrote:

> On Tue, 24 Oct 2006 23:32:18 GMT, "kilikini"
> > wrote:
>
>>Detox tea! GREAT idea! See? I need input like this. Thank you!
>>
>>kili
>>
>
> Kili,
>
> You need input from registered dieticians/nutritionists... Not from
> everyone here on this newsgroup who thinks they know a bit. Not to
> put down everyone he I am certainly not doing that. But they for
> the most part are not trained in treating your disease. Find someone
> who is.

Absolutely. I'm sure not trained in dietary things. But I know what *I*
would do, so I share. That's what she asked for.

> What we can do, after you have consulted with a professional, is to
> help you menu plan within what you can eat. But not until you have
> consulted with a person specifically trained to help you.

I'm new here. I'm a vegetarian. I do the natural thing. I've got my share of
physical problems like everyone else, and if everyone takes their own
personal experience and shares with Kili, she'll have a decent foundation
to go to the professional with, intelligent questions to ask and so forth.

I'm in no way saying that she should take newsgroup replies as written in
stone!

-feverish

kilikini wrote:

> Sorry, I had to just do a catch-up/erase on posts because I've been
> out of town for a couple of days, and had over 1200 messages! In any
> case, I have a serious question that I wonder if anyone can answer.
> I've done some googles, but can't find any sort of menu for what I
> need.
>
> I was just diagnosed with hemochromatosis.
>
> (link)
> http://digestive.niddk.nih.gov/ddise...tosis/index.ht
> m
>
> It's an inherited liver disease (both parents have to have the gene)
> which means my body considers iron a toxin. In essence, anything
> I've eaten from babyhood on, has been stored in my liver and is
> giving me cirrhosis. (NOTE: This is NOT alcohol related....)
>
> My doctor has advised me against eating meat, dairy, anything carb
> related, no green leafy veggies, no beets, no shellfish, no tuna, no
> salmon - for at least a year until they can work on this part of me
> and start phlebotomy treatment (almost like dialysis). Meanwhile, as
> of most likely Monday or Tuesday, I'm going to have my cancer surgery
> thus they want me to be fully healed before they start on the liver
> thing. If the phlebotomy treatments don't work, I'll need a liver
> transplant.
>
> Does anyone, possibly, have any ideas on menus? I'm kind of at a
> loss here and just looking for anything I can eat. The doctor said
> my liver enzymes will NOT go up if I do NOT intake any more iron
> through food or even, get this, a cast iron skillet. This is a
> permanent illness and one I will have to make immediate and permanent
> adjustments for.
>
> Any help is appreciated.

If your doctor didn't say what you _can_ eat safely, call or go back to
the office and ask!!

--
Dan Goodman
All political parties die at last of swallowing their own lies.
John Arbuthnot (1667-1735), Scottish writer, physician.
Journal http://dsgood.livejournal.com
Links http://del.icio.us/dsgood
Blog http://dsgood.googlepages.com

kilikini wrote:

> Christine Dabney wrote:
>> On Tue, 24 Oct 2006 23:32:18 GMT, "kilikini"
>> > wrote:
>>
>>> Detox tea! GREAT idea! See? I need input like this. Thank you!
>>>
>>> kili
>>>
>>
>> Kili,
>>
>> You need input from registered dieticians/nutritionists... Not from
>> everyone here on this newsgroup who thinks they know a bit. Not to
>> put down everyone he I am certainly not doing that. But they for
>> the most part are not trained in treating your disease. Find someone
>> who is.
>>
>> What we can do, after you have consulted with a professional, is to
>> help you menu plan within what you can eat. But not until you have
>> consulted with a person specifically trained to help you.
>>
>> Christine
>
> I go back to the Mayo Clinic Thursday and I'll ask more questions, Chris.
> Thanks.

And take the blessings of the goddess and the white light thoughts from me
with you, sweetie. I wish you nothing but good.

There are many many homeopathic ways of helping treatments. And of helping
you to get through treatments.

If you're ever interested, please feel free to email me
( dj.caliblu(at)gmail.com ) and we can talk. I'm sure not new to the
disease thing.

-feverish

On Wed, 25 Oct 2006 01:47:38 GMT, "kilikini"
> wrote:

>Damsel in dis Dress wrote:
>>
>> When life gives you lemons, make lemonade. Unless it has iron in it.
>
>ROFL!
>
>kili <----- still grinning

I love making you laugh!