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missfearless
06-25-2011, 01:53 AM
Hi all. I'm diagnosed with class 4/5 lupus nephritis but the doctors say its curable. I was wondering what type of diet I should be taking? What food should I avoid? I know salt is a no no. My mom told me I should avoid bananas.

I was looking at this website: http://www

can anyone vouch that what they say is true?

Linda From Australia
06-25-2011, 03:16 AM
It is REALLY IMPORTANT to make sure you follow your doctor's orders about taking your medication.

You can go on the most fantastic kidney diet, but without the proper medication, you are risking permanent damage to your kidneys, which means that you are at a higher risk of dying. I think that Lupus Nephritis is a little different to other kidney diseases, but someone more knowledgeable will be able to give you the correct advice.

I am giving you the link for the kidney nutrition page of the Australian Kidney foundation. If you cannot access the web site because you are in another country, let me know and I will paste the information here.

http://www.kidney.org.au/ForPatients/NutritionandCKD/tabid/705/Default.aspx

What medication has your doctor put you on for Lupus Nephritis?

Peridot20_Gem
06-25-2011, 03:28 AM
Hello Missfearless,

I would listen to Linda and what she's said although another member may be able to help but the best person to chat to about a diet would actually be the specialist when you see him/her as they'll put you on the right track more....it's only like people having diabetes if they need to see the dietican then they're refered on by their specialist.

All the best Terry xxx

lovedbyHim
06-25-2011, 04:02 AM
Missfearless, I have been on all kinds of diets to try to take less meds and none of them healed me. I do believe in eating right so I don't cause more problems. You're right high salt, high sugar, high fat, etc. Is not good for any of us. I have a friend who has kidney disease from AI issues and he was put on a diet by his kidney specialist, which is low in potassium, but he he also takes an immune suppressing drug. His wife took him off the drug for awhile, and he is now on dialysis for the rest of his life. I am not trying to frighten you, this is just the facts. We do our best to find good docs we can trust and we follow their expertise, because Lupus is not like a cold, where we can play with diets, herbs, etc. And not follow our docs orders. My rheumy works with me when I want to try something. For example I recently tried tummuric for inflammation and my doc okayed my backing off my nsaids to see if it worked. I did not and so I am back on it. Trust the docs and those on this forum who have learned some things along the years of battling AI diseases. Keep asking questions and maybe you will not mess up as much as I have! (((hugs)))

rob
06-25-2011, 05:25 AM
Hi all. I'm diagnosed with class 4/5 lupus nephritis but the doctors say its curable. I was wondering what type of diet I should be taking? What food should I avoid? I know salt is a no no. My mom told me I should avoid bananas.

I was looking at this website: http://www.speedyremedies.com/home-remedies-for-nephritis.html

can anyone vouch that what they say is true?

Hi Missfearless,

You have been given some solid advice from others here. Diet is a frequent subject here. You should know, that there is no diet that is clinically proven to have any effect on autoimmune disease activty in Lupus. Also, unfortunately at this point, there IS NO CURE for Lupus, "natural", or otherwise. Anyone who claims that they have a "cure" is being dishonest.

I've never heard of avoiding bannanas. I eat one every other day because, well, I just like banannas! I've never noticed any problems. One food that is proven to have a bad effect for people with Lupus, and that we should avoid, is Alfalfa Sprouts. Sprouts can induce a flare in many people.

A well balanced diet is an important thing for all of us to maintain overall good health, whether we have Lupus or not. But to attempt to modify disease activity with diet alone is a dangerous activity with no proven positive results for Lupus patients. Have a balanced diet, stay on your meds, and follow your Dr./Rheumotlogists orders. Your Dr./Specialist can help you with advice on a balanced diet, or you could seek advice from a nutritionist.

Rob

PS-Welcome to WHL!

Peridot20_Gem
06-25-2011, 07:10 AM
Rob,

I do know bananas are ok but i have a game swallowing them with the sjogren's even cut up they really hurt my gullet but you've just stated something i did'nt know about sprouts and i've been eating those for years...just love them, well that's a green took off the list and just alerted the chef.

tgal
06-25-2011, 08:26 AM
Hi There,

Everyone has given you some wonderful advice on this topic so I really don't have much else to say about that. I did want you to see why we are so passionate about taking your medications and not being suckered in to some "diet of the month" cure for Lupus. I am about to post something about the board rules. I am NOT saying that you did anything wrong, the part I want you to read is the 2nd part about Susie's daughter. It is because of what happened to her that we are here. It is also why we make sure that fad diets and natural pills are not EVER sold as "cures" on this board.

Board Rules and Susie's Story (http://forum.wehavelupus.com/showthread.php?4233-BOARD-RULES)

missfearless
06-25-2011, 08:08 PM
Hi everyone, first off, don't panic. I am taking all my medications! I just want to avoid certain food that could possibly react with my medication. I read online that oxalic acids can react with calcium and cause things like kidney stones. I was referred to a dietitian but she was crap. She told me to put on more weight when I was already gaining weight like crazy. She didn't know anything about my condition at all.

I just don't want to take my medicine on one hand but intake lots of salt. That will not help with my recovery. I am NOT trying to stay away from my medicine. I am on the following medicines:

hydroxychloroquine sulfate
mycophenolate (cellcept)
calcium
prednisolone
potassium chloride
furosemide

I have yet to see the renal doctor, the earliest app I could get was on 30th June because he is a very busy man.

tgal
06-25-2011, 08:27 PM
30th of June isn't too bad! We see people waiting for months (you would think these doctors would know that stress doesn't help us and waiting 3 months is stressful).

I really don't know what to tell you other than most we are encouraged to eat a heart healthy diet. The same old pyramid that you learned in school is the one we are supposed to eat. Now, there are times that our doctors may ask us to try something else. For example, my doctor wants me to start a modified atkins diet because there have been studies showing that it helps reduce seizures. There is a whole list of things that I have to do first and that I have to watch for because we don't want my other symptoms going crazy. I had another doctor that told me to go vegan and another that said "organic foods only". Come to find out those two doctors told all of their patients to do that and didn't take into account my illness.

Eat healthy.Take care of yourself and you should be ok.

magistramarla
06-25-2011, 09:37 PM
Hi everyone, first off, don't panic. I am taking all my medications! I just want to avoid certain food that could possibly react with my medication. I read online that oxalic acids can react with calcium and cause things like kidney stones. I was referred to a dietitian but she was crap. She told me to put on more weight when I was already gaining weight like crazy. She didn't know anything about my condition at all.

I just don't want to take my medicine on one hand but intake lots of salt. That will not help with my recovery. I am NOT trying to stay away from my medicine. I am on the following medicines:

hydroxychloroquine sulfate
mycophenolate (cellcept)
calcium
prednisolone
potassium chloride
furosemide

I have yet to see the renal doctor, the earliest app I could get was on 30th June because he is a very busy man.

I was told to not take calcium, potassium or magnesium at the same time that I take the plaquenil (hydroxychloroquine). I take my plaq in the morning and the other supplements at bedtime.
Hugs,
Marla

mel_cat
10-15-2011, 06:24 PM
Hi missfearless and everyone! This is my first post here.

I was diagnosed with stage 4 lupus nephritis when I was 12 so been living with it so far for about 7 years now and definitely had my ups and downs. Currently, my doctors say I am in 'remission' or rather it is stable at the moment. In response to your question about diet.. there is no proven right foods that you ought to eat to 'cure' lupus. Since, i'm told there is no cure. I have had varied opinions on what I can eat or not eat. A doctor even said I could eat anything after when I was heading to remission. Mum always says doctors aren't gods which is true. However, it doesnt mean you dont listen to them either. The main thing is to take all the medication but obviously you dont want the side effects. So, I guess whatever I wanted to try with my diet in the past, I always checked with the doctor to make sure its compatible with the medication i am on -the safest way is to go all natural even with vitamins. So, diet will probably be different for everyone, but i've always tried to maintain a healthy balanced diet. Of course, reduction of salt intake, lots and lots of water, lots of fruit and vege, I have a lot of gluten-free foods because personally I find wheat makes my stomach bloated (thats different with everyone). So, listen to what your body tells you.

It's not just diet though, exercise plays such a large role which was constantly emphasised especially when I can be a bit of stress-head. So I exercise daily to thepoint its become a routine overtime.

Hope that helps. I am currently taking 2000mg of mycophenolate twice daily. I have been on immuran and prednisone and other steroids at one point but that was reduced gradually.

tgal
10-15-2011, 07:26 PM
Hi missfearless and everyone! This is my first post here.

I was diagnosed with stage 4 lupus nephritis when I was 12 so been living with it so far for about 7 years now and definitely had my ups and downs. Currently, my doctors say I am in 'remission' or rather it is stable at the moment. In response to your question about diet.. there is no proven right foods that you ought to eat to 'cure' lupus. Since, i'm told there is no cure. I have had varied opinions on what I can eat or not eat. A doctor even said I could eat anything after when I was heading to remission. Mum always says doctors aren't gods which is true. However, it doesnt mean you dont listen to them either. The main thing is to take all the medication but obviously you dont want the side effects. So, I guess whatever I wanted to try with my diet in the past, I always checked with the doctor to make sure its compatible with the medication i am on -the safest way is to go all natural even with vitamins. So, diet will probably be different for everyone, but i've always tried to maintain a healthy balanced diet. Of course, reduction of salt intake, lots and lots of water, lots of fruit and vege, I have a lot of gluten-free foods because personally I find wheat makes my stomach bloated (thats different with everyone). So, listen to what your body tells you.

It's not just diet though, exercise plays such a large role which was constantly emphasised especially when I can be a bit of stress-head. So I exercise daily to thepoint its become a routine overtime.

Hope that helps. I am currently taking 2000mg of mycophenolate twice daily. I have been on immuran and prednisone and other steroids at one point but that was reduced gradually.

Please remember that the Lupus association recommends a balanced diet is required for LUPUS patients. Some doctors may suggest different diets for different patients but as far as we are concerned here, there is no diet or alternative medicine that is suggested. It is wonderful that you pointed out that you checked with your doctor before trying any diet! That is exactly how we have to do it.

Part of the balanced diet is, as mentioned above, exercise. The amount and types of exercise need to be discussed with your doctors depending on what type of damage has occurred in your body (knees etc).

We are really glad that you have decided to join us here at WHL! Please make yourself at home. Look around through old posts or start new ones of your own. You will find a wonderful group of caring people and many of them around your age! We are all here for you

To other newer members of the forum I am going to post a link to something very important to us at WHL. The story will explain what happened to make our wonderful founder start our online family. This is one of the most important things that we all should know about our posts here

How to get banned from WHL (http://forum.wehavelupus.com/showthread.php?9843-How-To-Get-Banned-From-WHL)

steve.b
10-15-2011, 08:13 PM
hi mel-cat,
welcome to a caring buch of people.
i call them my cyber family, because we try to encourage each other so much.
it is a great place to let you know you are not alone.

giggle
10-16-2011, 04:56 PM
Please remember that the Lupus association recommends a balanced diet is required for LUPUS patients. Some doctors may suggest different diets for different patients but as far as we are concerned here, there is no diet or alternative medicine that is suggested. It is wonderful that you pointed out that you checked with your doctor before trying any diet! That is exactly how we have to do it.

Part of the balanced diet is, as mentioned above, exercise. The amount and types of exercise need to be discussed with your doctors depending on what type of damage has occurred in your body (knees etc).

We are really glad that you have decided to join us here at WHL! Please make yourself at home. Look around through old posts or start new ones of your own. You will find a wonderful group of caring people and many of them around your age! We are all here for you

To other newer members of the forum I am going to post a link to something very important to us at WHL. The story will explain what happened to make our wonderful founder start our online family. This is one of the most important things that we all should know about our posts here

How to get banned from WHL (http://forum.wehavelupus.com/showthread.php?9843-How-To-Get-Banned-From-WHL)

Sometimes I think people are a bit too sensitive to this rule and see it being broken or about to be broken when it really really isn't. I would hope that we are open to discuss things such as diet and using our own common sense to decide what is best for our own bodies based on our own experience and our doctors instruction. No one implied that a diet was a cure for lupus, they even went so far as to explain that no diet was a cure for lupus.
Food intake... i.e. diet... is the most important factor to a human beings health, without food our bodies have no fuel, we starve and we die. I think we should be able to openly discuss diet without automatically being seen to be promoting either not taking medications or promoting a cure. At the moment I can't eat food, but I am afraid to discuss it on this forum because the second I start to talk about a diet for my condition Im going to get people thinking I am promoting some kind of cure for lupus. But I really do want to talk to others who have gastroparesis about what foods work for them.

rob
10-16-2011, 08:36 PM
Sometimes I think people are a bit too sensitive to this rule and see it being broken or about to be broken when it really really isn't. I would hope that we are open to discuss things such as diet and using our own common sense to decide what is best for our own bodies based on our own experience and our doctors instruction. No one implied that a diet was a cure for lupus, they even went so far as to explain that no diet was a cure for lupus.
Food intake... i.e. diet... is the most important factor to a human beings health, without food our bodies have no fuel, we starve and we die. I think we should be able to openly discuss diet without automatically being seen to be promoting either not taking medications or promoting a cure. At the moment I can't eat food, but I am afraid to discuss it on this forum because the second I start to talk about a diet for my condition Im going to get people thinking I am promoting some kind of cure for lupus. But I really do want to talk to others who have gastroparesis about what foods work for them.

Giggle,

A moderator making sure brand new members are aware of the rules laid down by forum management is a way of avoiding breaches of the Membership Agreement, and problems in the future.

As an established member with many posts and threads, no member of the Mod team or management is going to think you are promoting any sort of fad diet/fraudulent product by creating a thread about Gastroparesis, and what sort of foods or diet could help with this condition.

There have been many situations in the past where people have signed up here and have been unclear as to their reason for being here. Some, like to "beat around the bush" at first to see if this is a place where they could advertise or push a fraudulent product. As a result, we have to be up front and vigilant about the rules pertaining to the promotion of these products.

Rob
Moderator

tgal
10-16-2011, 09:05 PM
If anyone actually breaks the rule a private discussion and possibly, an infraction, will be discussed/given. That was not and has not been the case. Since the "diet" threads are the ones that usually end up in a place where the food discussions turn into the food as a cure/remission it is just important that new people know the rules behind it.

You posted about your eating issues and not one word was said so I in no way understand your concern now. Talking about what food does to an individual body is not an issue and no issue was taken with the post above but it was a good place to post the rule because many new people are here who do not know how strictly we adhere to discussions about food or alternative meds being ways to "fix" our Lupus. When a diet thread starts getting popular it just makes things easier on all of us to post the reminder.

I will gladly apologize when I feel that I have done something that I should not have but in this instance it was simply posted as informational to those that did not know. That is part of my job and it is what I have to do

giggle
10-16-2011, 09:27 PM
Sorry Rob & Tgal I made a booboo that has lead me to be misunderstood : )

I replied to your post tgal but I read through the entire thread and not just your post. It was in response to the entire thread, I should have cut your quote out and just used the link... I was being lazy by quoting you for the link and forgot to snip out your post!

As you can see from the beginning people were assuming it was a thread about a cure diet and that the OP wasn't taking their medication.

Sorry, it wasn't aimed specifically at you tgal. : ) When I said 'people are a bit too sensitive' I meant people in general, not the sarcastic/passive aggressive version of pointing at one person in particular and saying 'people'.

I also made that thread about gastroparesis after I made a post in this thread. I merely decided I should do it anyway because it was a harmless post and no one could have anything against it and if they did I wouldn't let it get to me.