Re: IgAN and ESRD stats

[Guest guest]

I was very interested to read about your diet. What do you take for milk? -

soya? Does it mean you can't eat eggs either - I would be interested to hear

more.

Jeanie

[Guest guest]

Hi everyone

I'm new to the group and have been watching the posts with interest. I'm

Australian and it has been particularly interesting to note the different

approach to treatment. I was diagnosed with IgAN 3 years ago. My treatment

was, and still is, the following:

- keep blood pressure at or below 110 - 20 over 70 - 80 (I'm in my

fifties) with Karvea

- keep cholesterol below 4 (Lipitor)

- drink 3 litres water per day

- exercise as much as possible daily

- no animal protein in diet

- 8 - 12 weekly 24 hour collection tests and blood tests

I now have normal kidney function, no protein in my urine, normal creatinine

clearance, no casts and vastly reduced red blood cells in my urine. It has

taken 3 years but I'm now working towards remission. I have setbacks of course

when I get a viral illness but as I expect that to happen I don't get too

stressed.

I'm not suggesting that a vegan diet is for everyone, although my neph insists

on it and his results with patients over 15 years are impressive. He does

suggest that 1 meal a week with animal protein won't cause any problems but when

he put that to me I decided to be completely vegan as I think that works better

for me than to be looking forward to one meal a week with steak, chicken, fish

or whatever. I did have salmon on Christmas day however and that was great!

My neph (who has worked and studied in the USA) tells me that while American

nephs sometimes advise low protein diets no-protein diets are not the norm.

Just something to think about. (My neph is extremely highly regarded, Professor

of renal medicine at one of our most prestigious teaching hospitals and

universities)

Thank you all for sharing your experiences.

Laraine

IgAN and ESRD stats

Since we've had a lot of talk about end-stage renal disease lately, I

thought I would mention the current thinking that people with IgAN develop

progressive renal failure in approximately 20-40% of cases from 10 to 25

years after diagnosis.

I hope this can be a little reassuring to some of the recently-diagnosed, in

that IgAN is still thought not to result in end-stage (dialysis or

transplant) for the majority, and even for those who do reach it, it can

take decades.

Pierre

[Guest guest]

Hi Jeanie

My diet is no animal protein at all - no dairy, eggs, chicken, fish or any red

or white meat. I use a lot of soy product - milk, yoghurt, tofu etc. It was

hard at first because I'm not committed philosophically to being a vegan but

once I saw my test results improving I got lots of positive reinforcement. Of

course keeping my blood pressure and cholesterol down help also. I guess I'm

prepared to do anything I can and at least this way I feel I'm actively working

for my health. I know the progress of this disease is pretty much inevitable

but I'm just hoping to slow the progress down. We all do what we can in ways

that we can manage I guess. I find the exercise the hardest - I try to walk as

much as I can but I admit I could do heaps more! I also drink wine with meals -

life with no wine with your carrot soup could be quite bleak!

Cheers, Laraine

Re: IgAN and ESRD stats

I was very interested to read about your diet. What do you take for milk? -

soya? Does it mean you can't eat eggs either - I would be interested to hear

more.

Jeanie

[Guest guest]

Any other people have positive results from cutting out animal proteins?

Re: IgAN and ESRD stats

Hi Jeanie

My diet is no animal protein at all - no dairy, eggs, chicken, fish or

any red or white meat. I use a lot of soy product - milk, yoghurt, tofu

etc. It was hard at first because I'm not committed philosophically to

being a vegan but once I saw my test results improving I got lots of

positive reinforcement. Of course keeping my blood pressure and

cholesterol down help also. I guess I'm prepared to do anything I can

and at least this way I feel I'm actively working for my health. I know

the progress of this disease is pretty much inevitable but I'm just

hoping to slow the progress down. We all do what we can in ways that we

can manage I guess. I find the exercise the hardest - I try to walk as

much as I can but I admit I could do heaps more! I also drink wine with

meals - life with no wine with your carrot soup could be quite bleak!

Cheers, Laraine

Re: IgAN and ESRD stats

I was very interested to read about your diet. What do you take for

milk? -

soya? Does it mean you can't eat eggs either - I would be interested

to hear

more.

Jeanie

[Guest guest]

I admire your resolve and your strength for putting yourself on such a diet,

but I personally will have to find another way. :-) The taste of a freshly

roasted chicken or leg of lamb seasoned with garlic and rosemary, along with

the glass of wine (red of course) provide me with reasons for wanting to

slow down my IgA. They bring back memories of family, ands times when life

was easier. They bring a peace to me, which for the record I am sure brings

down my BP. Although these types of food are exactly that, just food

providing nurrishment to my body (along with the protein), I should not be

as attached to them as I am. Unfortunalty I am. Fish, another one of my

favourites, steamed, fried, or even raw (in Japan right now), bring back

memories of fishing with my Dad, along with that taste that reminds me I am

alive.

I dread the day when I will be forced to give up these foods, as for me

they add colour to the canvas of experiance that makes living with or

without IgA all worth it, and so for now I eat everything, and do as much as

I can while I can.

Maybe I could have a tofu burger now and then, but not every day. :-)

I did want to thankyou for writing this email though, as I recieved a warmth

from it I can not really explain. When I look at this group and read its

emails, I am amazed by how much strength there is here. I have not been

actively writing emails recently, but read every single one as it comes

through, and find that along with the hardship that each of us face, is a

will to survive, a will to live. Each, in our own way, we do what we can for

ourselves and those around us and for that I want to thank everyone on this

group. Everyday waking up to 10-12 emails from people " living " makes me want

to live to.

Thankyou

Re: IgAN and ESRD stats

>

>

> I was very interested to read about your diet. What do you take for

milk? -

> soya? Does it mean you can't eat eggs either - I would be interested to

hear

> more.

>

> Jeanie

>

>

[Guest guest]

Welcome to the group Laraine.

I'm glad that whatever you are doing is working for you.

Just one thing though: there is no such thing as a no-protein diet.

Everything we eat, whether of animal or vegetable origin contains protein.

It's impossible to not eat protein.

For those of us with more advanced renal failure, one ounce of meat (or an

alternative like an egg, cheese or peanut butter) packs the most complete

protein in the smallest amount of food. To get the same thing in a vegan

diet would be very difficult without going over the allowable limits for

phosphorus and potassium (although renal dieticians do their best for

patients who are vegans). Just a reminder that there is a wide range of IgAN

on this group, from remission, to very mild, to end-stage and beyond. People

with mild IgAN don't have to worry about these complications.

I grew up on very nearly a vegan diet, and maintained that lifestyle by

choice. It wasn't a family habit, as I was the only one in my family like

that. For me, it had nothing at all to do with having IgAN or not. From as

early as I can remember as a child, I simply never liked the idea of eating

meat. I also never liked eggs or milk, and I never ate fish at all.

Unfortunately, for me, it didn't prevent the IgAN from happening in the

first place, then slowly progressing towards end-stage renal disease.

Now that I do require a low-protein diet, I actually find it a challenge to

get that one ounce of meat every meal, every single day. In the past, both

distant and recent, I could easily go for weeks without eating any meat at

all.

Pierre

IgAN and ESRD stats

>

>

> Since we've had a lot of talk about end-stage renal disease lately, I

> thought I would mention the current thinking that people with IgAN

develop

> progressive renal failure in approximately 20-40% of cases from 10 to 25

> years after diagnosis.

>

> I hope this can be a little reassuring to some of the

recently-diagnosed, in

> that IgAN is still thought not to result in end-stage (dialysis or

> transplant) for the majority, and even for those who do reach it, it can

> take decades.

>

> Pierre

>

>

>

[Guest guest]

Pierre, the words you speak are like honey to my ears.

Ty

Re: IgAN and ESRD stats

>

>

> > ((snipped))

> > I dread the day when I will be forced to give up these foods, as for me

> > they add colour to the canvas of experiance that makes living with or

> > without IgA all worth it, and so for now I eat everything, and do as

much

> as

> > I can while I can.

> >

> > Maybe I could have a tofu burger now and then, but not every day. :-)

> >

> > ((snipped))>

>

> >

>

> Hi . Fortunately for you, you will never have to give up those foods,

> even if you end-up in renal failure. If you ever have to be on a

> pre-dialysis diet, you will only have to cut back on the amounts, and eat

> them without salt. The things people on renal diets do have to eliminate

as

> much as possible are not meat or fish (except for processed meats because

of

> the sodium), but things like beans and most dairy products - mainly

because

> of the high phosphorus content. Wine is not excluded either. In fact, a

> moderate amount of wine daily is on the list of energy boosters.

>

> I can't guarantee you might not come into contact with soy products if you

> ever need dialysis though, because then, it becomes a challenge to eat

> enough protein. Sometimes, even meat is not enough : )

>

> Pierre

>

>

>

>

>

[Guest guest]

Re: IgAN and ESRD stats

> ((snipped))

> I dread the day when I will be forced to give up these foods, as for me

> they add colour to the canvas of experiance that makes living with or

> without IgA all worth it, and so for now I eat everything, and do as much

as

> I can while I can.

>

> Maybe I could have a tofu burger now and then, but not every day. :-)

>

> ((snipped))>

>

Hi . Fortunately for you, you will never have to give up those foods,

even if you end-up in renal failure. If you ever have to be on a

pre-dialysis diet, you will only have to cut back on the amounts, and eat

them without salt. The things people on renal diets do have to eliminate as

much as possible are not meat or fish (except for processed meats because of

the sodium), but things like beans and most dairy products - mainly because

of the high phosphorus content. Wine is not excluded either. In fact, a

moderate amount of wine daily is on the list of energy boosters.

I can't guarantee you might not come into contact with soy products if you

ever need dialysis though, because then, it becomes a challenge to eat

enough protein. Sometimes, even meat is not enough : )

Pierre

[Guest guest]

My purpose in starting this thread was to offer some hope to early IgANers,

because of all the talk we've had about end-stage, dialysis and transplants.

To further restate what I already said, the majority of people who are

diagnosed early with IgAN do not progress to end-stage. Progression of IgAN

is not a foregone conclusion, and of all the kidney diseases, IgAN is

well-known to sometimes go into spontaneous remission.

So, please don't just assume that you will automatically end up on dialysis

if you are diagnosed with IgAN.

Unfortunately though, it remains impossible to predict with any accuracy who

will and who won't progress.

Pierre

[Guest guest]

Ditto the welcome to the group from Pierre Larraine

Interestingly my sister is a strict Vegan along with her family. She

was first vegetarian then progressed to vegan and has been so now for

about 20 years. She is very committed to being a vegan, and often has a

pop at me for eating meat (in the nicest way of course), and has tried

many times to convince me that my IGAN could be cured by a changing my

diet, strange advice since both my Nephews at early ages were diagnosed

with asthma!

Now I eat no dairy foods, and only eat small amounts of chicken, but a

lot of oily fish. Whilst I would love to be convinced that advocating a

vegan diet would cure me, I am afraid that it does not sit comfortably

with me, for the reasons outlined below so well by Pierre. My

Nephrologist has already given me a small list of things he would wish

me to avoid, but at this point has said that no diet restrictions are

needed and I certainly would not start on any sort of change without

first consulting with my medics, a little gentle reminder to everyone

else contemplating major diet changes, please be careful and always work

with your medics prior to doing so.

I admire people like yourselves who are devoted to their regime, and I

hope you continue to get such good results. Well done to you.

With best wishes

Re: IgAN and ESRD stats

Welcome to the group Laraine.

I'm glad that whatever you are doing is working for you.

Just one thing though: there is no such thing as a no-protein diet.

Everything we eat, whether of animal or vegetable origin contains

protein.

It's impossible to not eat protein.

For those of us with more advanced renal failure, one ounce of meat (or

an

alternative like an egg, cheese or peanut butter) packs the most

complete

protein in the smallest amount of food. To get the same thing in a vegan

diet would be very difficult without going over the allowable limits for

phosphorus and potassium (although renal dieticians do their best for

patients who are vegans). Just a reminder that there is a wide range of

IgAN

on this group, from remission, to very mild, to end-stage and beyond.

People

with mild IgAN don't have to worry about these complications.

I grew up on very nearly a vegan diet, and maintained that lifestyle by

choice. It wasn't a family habit, as I was the only one in my family

like

that. For me, it had nothing at all to do with having IgAN or not. From

as

early as I can remember as a child, I simply never liked the idea of

eating

meat. I also never liked eggs or milk, and I never ate fish at all.

Unfortunately, for me, it didn't prevent the IgAN from happening in the

first place, then slowly progressing towards end-stage renal disease.

Now that I do require a low-protein diet, I actually find it a challenge

to

get that one ounce of meat every meal, every single day. In the past,

both

distant and recent, I could easily go for weeks without eating any meat

at

all.

Pierre

IgAN and ESRD stats

>

>

> Since we've had a lot of talk about end-stage renal disease lately,

I

> thought I would mention the current thinking that people with IgAN

develop

> progressive renal failure in approximately 20-40% of cases from 10

to 25

> years after diagnosis.

>

> I hope this can be a little reassuring to some of the

recently-diagnosed, in

> that IgAN is still thought not to result in end-stage (dialysis or

> transplant) for the majority, and even for those who do reach it, it

can

> take decades.

>

> Pierre

>

>

>

[Guest guest]

Hi Pierre

Thanks for your response - but in response to your reminder that plants have

protein, well of course plants have protein! Otherwise vegans would not live

long at all! I'm sorry, I thought I made it clear that it is only animal

protein that that is a problem for people with IgAN - plant protein is no

problem at all. It is not difficult to get enough complete protein with a vegan

diet, although the restrictions do mean that one has to be creative with food

otherwise it could become very boring.

I am very mindful that there is a wide range of IgAN in this group and thought

only to describe what is being done in Australia for all IgAN people by my neph

and his colleagues. I certainly do not suggest that a vegan diet will prevent

IgAN, anymore than a tonsillectomy would, but rather to draw your attention to

the fact that once the disease has been established animal protein restriction

appears to delay progress, certainly this is so in the longitudinal study (15

years) still in progress by my neph and his colleagues.

I know not all nephs in Australia advise a vegan diet. I read the studies,

thought about it a lot and decided to go with my neph's advice. He made it

clear he is not interested in giving a great deal of time to patients who don't

follow his regime and as I determined after research that he is the best in his

field here I chose to go with his advice.

We all must choose a life that is right for us.

Thank you Pierre for the good work you are doing for this group.

Laraine

Re: IgAN and ESRD stats

>

>

> I was very interested to read about your diet. What do you take for

milk? -

> soya? Does it mean you can't eat eggs either - I would be interested to

hear

> more.

>

> Jeanie

>

>

[Guest guest]

Hi

I hope I didn't imply that a vegan diet would provide a cure for IgAN - that is

not so. My neph's studies indicate a slowing down of the progression of the

disease, and an increase in the number of people who go into remission for a

time - no cures!

Laraine

IgAN and ESRD stats

>

>

> Since we've had a lot of talk about end-stage renal disease lately,

I

> thought I would mention the current thinking that people with IgAN

develop

> progressive renal failure in approximately 20-40% of cases from 10

to 25

> years after diagnosis.

>

> I hope this can be a little reassuring to some of the

recently-diagnosed, in

> that IgAN is still thought not to result in end-stage (dialysis or

> transplant) for the majority, and even for those who do reach it, it

can

> take decades.

>

> Pierre

>

>

>

[Guest guest]

Hi Laraine,

I'm very interested in the information that you have. I also did

some reading (not much) in the primary literature about the different

types of protein and their effect on the kidneys. I don't remember

the details, but I think the general impression was that the type of

protein really didn't matter, as long as it was protein. In fact,

when I spoke with a renal dietician here in the states, I think she

pretty much agreed. So, for example, I'm using rice milk instead of

soy becuase it doens't have the high levels of any protein in it.

Anyway, the long and short is that I was wondering if you had any

good primary references from your neph about the tpes of protein and

their effect on the kidneys??

Ingrid

> Hi

>

> I hope I didn't imply that a vegan diet would provide a cure for

IgAN - that is not so. My neph's studies indicate a slowing down of

the progression of the disease, and an increase in the number of

people who go into remission for a time - no cures!

>

> Laraine

> IgAN and ESRD stats

> >

> >

> > Since we've had a lot of talk about end-stage renal disease

lately,

> I

> > thought I would mention the current thinking that people with

IgAN

> develop

> > progressive renal failure in approximately 20-40% of cases

from 10

> to 25

> > years after diagnosis.

> >

> > I hope this can be a little reassuring to some of the

> recently-diagnosed, in

> > that IgAN is still thought not to result in end-stage

(dialysis or

> > transplant) for the majority, and even for those who do reach

it, it

> can

> > take decades.

> >

> > Pierre

> >

> >

> >

[Guest guest]

QUOTE

My neph (who has worked and studied in the USA) tells me that while American

nephs sometimes advise low protein diets no-protein diets are not the norm.

UNQUOTE

As quoted above, you specifically mentioned that " no-protein diets are not

the norm " ((in America)). Hence my attempt to correct the impression that

there is such a thing as a no protein diet. I can see now that you meant to

say a " no meat protein diet " .

As far as I know, to the kidneys, protein is protein, once it has gone

through the digestive system. Whether a diet free of animal protein is of

any particular benefit is debatable, as I know of no published data that

would support this.

If your nephrologist is apparently imposing a highly restrictive diet on his

patients that is completely out of the mainstream in terms of normal

clinical practice (and not only among American nephs), it would be nice if

he and his colleagues would take time out to publish their evidence for

doing so.

I might also add that with diets, unless the actual feeding of patients is

strictly controlled and observed (which is clearly not possible over many

years), the doctor has to assume on faith that all his patients are

following his instructions, since there would be absolutely no way of

knowing if the patients are actually complying with the diet.

The belief in the benefits of a vegetarian diet come up periodically in

groups such as this. If there is any benefit at all (which I don't accept

without evidence), I suspect it would lie in the fact that (1) vegetarians'

would tend to be low protein eaters almost by default, and (2) vegetarian

diets are of course no cholesterol diets. Careful choice of foods with

moderate amounts of meat in a conventional diet can achieve the same

purpose.

Mind you, this does not mean I am not interested in your neph's approach.

It's always interesting to hear what other people are doing.

Pierre

Re: IgAN and ESRD stats

> Hi Pierre

>

> Thanks for your response - but in response to your reminder that plants

have protein, well of course plants have protein! Otherwise vegans would not

live long at all! I'm sorry, I thought I made it clear that it is only

animal protein that that is a problem for people with IgAN - plant protein

is no problem at all. It is not difficult to get enough complete protein

with a vegan diet, although the restrictions do mean that one has to be

creative with food otherwise it could become very boring.

>

((snipped))>

> Laraine

[Guest guest]

Hi Laraine

No I did not for one minute take your message as an implication that a

vegan diet cures IGAN. It would be interesting if your Nephrologist's

studies were available for study by others. I have found no studies

that indicate a vegan diet slows the progression of the disease.

Perhaps you could ask him or her if his studies are available anywhere,

or is it a study just within his boundary of work and patients who

adhere to it. I think this is a great shame, as there is little for us

IGAN'ers to cheer about in terms of hopes and progression in the

understanding of this condition.

I guess I am one those people who need concrete evidence before I start

to make drastic changes. Please do stay in touch with the group, it is

good to see how other people manage their condition.

Best wishes

.

Re: IgAN and ESRD stats

Hi

I hope I didn't imply that a vegan diet would provide a cure for IgAN -

that is not so. My neph's studies indicate a slowing down of the

progression of the disease, and an increase in the number of people who

go into remission for a time - no cures!

Laraine

IgAN and ESRD stats

>

>

> Since we've had a lot of talk about end-stage renal disease

lately,

I

> thought I would mention the current thinking that people with IgAN

develop

> progressive renal failure in approximately 20-40% of cases from 10

to 25

> years after diagnosis.

>

> I hope this can be a little reassuring to some of the

recently-diagnosed, in

> that IgAN is still thought not to result in end-stage (dialysis or

> transplant) for the majority, and even for those who do reach it,

it

can

> take decades.

>

> Pierre

>

>

>

[Guest guest]

I can see that the danger in focusing on one aspect of care for IgAn patients ,

in this instance restricted animal protein diet, clouds the fact that there are

many factors that determine eventual outcomes for people with this disease. No

one factor can determine or predict outcomes. I would like to refer you to 2

published papers by my neph, Lloyd Ibels of Dept of Renal Medicine, Royal North

Shore Hospital Sydney NSW

IgA Nephropathy: Analysis of the Natural History, Important Factors in the

Progression of Renal Disease, and a Review of the Literature Lloyd Ibels, MD

and Akos Z. Gyory DSc., MD, Medicine Vol 73 No 2

and

Primary IgA Nephropathy: Natural History and Factors of Importance in the

Progression of Renal Impairment Lloyd Ibels Kidney International, Vol 52,

Suppl. 61 (1997) pp S-67-S-70

You are quite right Pierre in saying that monitoring diet over long periods is

impossible and this study looks at a number of factors relevant in the

progression of IgAN. To quote from article 1 p 96

" Identification of factors known to be associated with an adverse outcome is

possible from features present at initial presentation and on renal biopsy, as

well as during follow up evaluation. Identification of these factors allows

early intervention to correct factors known to be associated with progressive

renal disease, namely dietary (animal) protein restriction to reduce

hyperfiltration in inflamed glomeruli, tight blood pressure control, correction

of hyperlipidemia, early introduction of phosphate binder therapy when renal

function becomes mildly impaired, maintenance of high fluid intake to ensure an

adequate urine flowrate and decreased tubulointerstitial toxicity of filtered

red cells and protein, promotion of an active exercise and healthy lifestyle

program addressing such issues as dietary manipulation, daily exercise, smoking

cessation, and maintaining desirable body weight to reduce the potentially

harmful effects on the kidney of hypertension, hyperfiltration, and

hyperlipidemia; and selected use of immune suppressive therapy in patients of

high risk of progression. Such intervention is likely to retard progression of

renal disease ...'

It's the whole picture that we must focus on. I guess I wanted to share my diet

because it is one thing, amongst others like controlling BP and cholesterol, we

can do ourselves to influence outcomes. I like to feel that I am active in

influencing my disease and not just relying on meds.

I know not all of my neph's patients become totally vegan but they must restrict

animal protein to .6g animal protein per kilo of body weight per day. Neph is

also a fiend about controlling weight!

I hope I have not caused distress to anyone. I would like to affirm however

that my neph is not outside the mainstream, but highly respected globally.

This group provides an opportunity to learn. We all know there is never just

one pathway to positive outcomes. Sharing what we know is the group's great

strengths.

Thanks Pierre for taking the time to clarify issues I have raised.

Laraine

Re: IgAN and ESRD stats

> Hi Pierre

>

> Thanks for your response - but in response to your reminder that plants

have protein, well of course plants have protein! Otherwise vegans would not

live long at all! I'm sorry, I thought I made it clear that it is only

animal protein that that is a problem for people with IgAN - plant protein

is no problem at all. It is not difficult to get enough complete protein

with a vegan diet, although the restrictions do mean that one has to be

creative with food otherwise it could become very boring.

>

((snipped))>

> Laraine

[Guest guest]

Hi Laraine.

Thanks for posting that. You are obviously a very well-informed patient and

a great addition to the group.

Other than the bit about the protein, I can relate to all the other things

your neph has recommended you do. Smoking cessation is known to be

important, as is regular exercise. I remember, years ago, my first neph

highly recommended a stationary cycle for exercise (good for Canadian

winters : ), stating that regular vigourous exercise was important. Body

weight is as well, but thankfully, that's never been a problem for me.

Your neph's insistence that his patients " must restrict animal protein to

..6g animal protein per kilo of body weight per day " actually seems to be

pretty close to what the standard low protein diet is.

It's a completely different issue when talking about more advanced renal

failure, but, in the context of mild or early IgAN, I've been around long

enough to have seen the popularity of " low protein " or " controlled protein "

diets come and go. I was actually put on just such a diet after my biospy in

1993, when my serum creatinine was still just barely above the normal range.

It wasn't hard to follow, because I already didn't eat that much protein. A

year later, a new city and a new nephrologist who didn't really think

protein was a big issue (since my BUN was almost normal at the time). Some

time later, there was a published study about low protein diets and IgAN

specifically (I can't put my finger on it at the moment) which concluded

there was no benefit, and no neph ever mentioned it again. With IgAN, it

seems that for every study that concludes something, there is another that

concludes the opposite, if you look hard enough. It's a bit like celery. One

day you hear in the media that it's good for you, the next day you hear that

it's not.

Anyway, with the further information you have provided, your nephrologist

seems to be very much in the mainstream and highly qualified. So, I take

back my previous comment about that : )

Pierre

Re: IgAN and ESRD stats

>

>

> > Hi Pierre

> >

> > Thanks for your response - but in response to your reminder that

plants

> have protein, well of course plants have protein! Otherwise vegans would

not

> live long at all! I'm sorry, I thought I made it clear that it is only

> animal protein that that is a problem for people with IgAN - plant

protein

> is no problem at all. It is not difficult to get enough complete

protein

> with a vegan diet, although the restrictions do mean that one has to be

> creative with food otherwise it could become very boring.

> >

> ((snipped))>

> > Laraine

>

>

>

>

[Guest guest]

Laraine,

My neph. has not suggested any strict low protien diet yet. What

state in Australia is this work being performed? I am interested. Although I do

not eat as much meat as I used to since I found this website I would miss it if

I was totally vegetaian I think. But it is surprising how practical you become

when you get nearer ESRD.

Derrick,

Sydney, Australia

Re: IgAN and ESRD stats

>

>

> I was very interested to read about your diet. What do you take for

milk? -

> soya? Does it mean you can't eat eggs either - I would be interested to

hear

> more.

>

> Jeanie

>

>

[Guest guest]

Hi Laraine

Thanks for sharing this information with us, certainly makes very

interesting reading. My somewhat sceptical approach has been replaced

now with great interest. Maybe my sister, and for that matter,

yourself, have a very valid point. I shall be seeing my Nephrologist on

Monday and if you don't mind, I shall let him read the undermentioned,

and ask him some questions. As I said earlier, I eat no dairy produce

at all, I have soy or rice milk (both disgusting but you live with it!),

and limited animal meat, so really I have well over half way there. But

the thought of living without my fish seems very daunting, some tofu and

chips doesn't have the same ring about it LOL!!!!!

If I gave the impression that I was uninterested or critical, I am

sorry, I did not mean to give that impression at all. Thank you very

much for sharing this with the group. You sound as if you have a

nephrologist with a very fine attitude and dedication, if his style

works for you, then I am not surprised you are very keen to share the

knowledge. I will let you know what my Nephrologist has to say ok.

Great to have such an informed group member among us.

Once again thanks for sharing.

Best wishes

Re: IgAN and ESRD stats

I can see that the danger in focusing on one aspect of care for IgAn

patients , in this instance restricted animal protein diet, clouds the

fact that there are many factors that determine eventual outcomes for

people with this disease. No one factor can determine or predict

outcomes. I would like to refer you to 2 published papers by my neph,

Lloyd Ibels of Dept of Renal Medicine, Royal North Shore Hospital Sydney

NSW

IgA Nephropathy: Analysis of the Natural History, Important Factors in

the Progression of Renal Disease, and a Review of the Literature Lloyd

Ibels, MD and Akos Z. Gyory DSc., MD, Medicine Vol 73 No 2

and

Primary IgA Nephropathy: Natural History and Factors of Importance in

the Progression of Renal Impairment Lloyd Ibels Kidney International,

Vol 52, Suppl. 61 (1997) pp S-67-S-70

You are quite right Pierre in saying that monitoring diet over long

periods is impossible and this study looks at a number of factors

relevant in the progression of IgAN. To quote from article 1 p 96

" Identification of factors known to be associated with an adverse

outcome is possible from features present at initial presentation and on

renal biopsy, as well as during follow up evaluation. Identification

of these factors allows early intervention to correct factors known to

be associated with progressive renal disease, namely dietary (animal)

protein restriction to reduce hyperfiltration in inflamed glomeruli,

tight blood pressure control, correction of hyperlipidemia, early

introduction of phosphate binder therapy when renal function becomes

mildly impaired, maintenance of high fluid intake to ensure an adequate

urine flowrate and decreased tubulointerstitial toxicity of filtered red

cells and protein, promotion of an active exercise and healthy lifestyle

program addressing such issues as dietary manipulation, daily exercise,

smoking cessation, and maintaining desirable body weight to reduce the

potentially harmful effects on the kidney of hypertension,

hyperfiltration, and hyperlipidemia; and selected use of immune

suppressive therapy in patients of high risk of progression. Such

intervention is likely to retard progression of renal disease ...'

It's the whole picture that we must focus on. I guess I wanted to share

my diet because it is one thing, amongst others like controlling BP and

cholesterol, we can do ourselves to influence outcomes. I like to feel

that I am active in influencing my disease and not just relying on meds.

I know not all of my neph's patients become totally vegan but they must

restrict animal protein to .6g animal protein per kilo of body weight

per day. Neph is also a fiend about controlling weight!

I hope I have not caused distress to anyone. I would like to affirm

however that my neph is not outside the mainstream, but highly respected

globally.

This group provides an opportunity to learn. We all know there is never

just one pathway to positive outcomes. Sharing what we know is the

group's great strengths.

Thanks Pierre for taking the time to clarify issues I have raised.

Laraine

Re: IgAN and ESRD stats

> Hi Pierre

>

> Thanks for your response - but in response to your reminder that

plants

have protein, well of course plants have protein! Otherwise vegans

would not

live long at all! I'm sorry, I thought I made it clear that it is

only

animal protein that that is a problem for people with IgAN - plant

protein

is no problem at all. It is not difficult to get enough complete

protein

with a vegan diet, although the restrictions do mean that one has to

be

creative with food otherwise it could become very boring.

>

((snipped))>

> Laraine

[Guest guest]

Hi Derrick

I'm in Sydney and my neph is based at Royal North Shore Hospital in St Leonards.

Call me if you like on 02 9427 1710 and I'll direct you to him. Laraine

Re: IgAN and ESRD stats

>

>

> I was very interested to read about your diet. What do you take for

milk? -

> soya? Does it mean you can't eat eggs either - I would be interested

to

hear

> more.

>

> Jeanie

>

>

[Guest guest]

Hi

Be prepared for some hostility - not all nephs are interested in restricted

protein (or no animal protein) diets. But everything is worth exploring, don't

you agree? Good luck on Monday.

Laraine

Re: IgAN and ESRD stats

> Hi Pierre

>

> Thanks for your response - but in response to your reminder that

plants

have protein, well of course plants have protein! Otherwise vegans

would not

live long at all! I'm sorry, I thought I made it clear that it is

only

animal protein that that is a problem for people with IgAN - plant

protein

is no problem at all. It is not difficult to get enough complete

protein

with a vegan diet, although the restrictions do mean that one has to

be

creative with food otherwise it could become very boring.

>

((snipped))>

> Laraine

[Guest guest]

Laraine,

Thanks, I will phone you this weekend. I am due to se my Neph. on 12

Feb 2002, so I will discuss this Veg. diet with him and possibly the prospect of

your Neph. although I suspect the latter may be a tricky manoeuvre.

Derrick

Re: IgAN and ESRD stats

>

>

> I was very interested to read about your diet. What do you take for

milk? -

> soya? Does it mean you can't eat eggs either - I would be

interested to

hear

> more.

>

> Jeanie

>

>

[Guest guest]

On the subject of diets - I was feeling rather heavy and tired so for a

couple of days I cut down on protein, For breakfast I had banana, orange,

yoghurt and 2 bran crispbreads, fruit for lunch and then ate normal chicken

meal at night for dinner. I found that not eating so much protein during the

day gave me more energy.

Jeanie

[Guest guest]

Jeanie,

Hopefully you're not anywhere near end-stage. One of the worst things about

being there is the limitations on potassium. Bananas, oranges, yoghurt and many

other fruits are high in potassium.

Marty

Re: IgAN and ESRD stats

On the subject of diets - I was feeling rather heavy and tired so for a

couple of days I cut down on protein, For breakfast I had banana, orange,

yoghurt and 2 bran crispbreads, fruit for lunch and then ate normal chicken

meal at night for dinner. I found that not eating so much protein during the

day gave me more energy.

Jeanie

[Guest guest]

I was just about to say that myself. Bran too. Enjoy those foods while you

can, Jeanie. I sure can't anymore. None of those are even options on my

diet, with the possible exception of some types of oranges, tangerines I

think.

A lot of people not yet nearing end-stage don't realize that while the

limitations in protein, sodium and phosphorus are important, the only one

that can kill you on its own is potassium if you don't watch it. Less likely

in pre-esrd than on dialysis though.

Pierre

Re: IgAN and ESRD stats

>

>

> On the subject of diets - I was feeling rather heavy and tired so for a

> couple of days I cut down on protein, For breakfast I had banana,

orange,

> yoghurt and 2 bran crispbreads, fruit for lunch and then ate normal

chicken

> meal at night for dinner. I found that not eating so much protein during

the

> day gave me more energy.

>

> Jeanie

>

>