Renal Diet Confusion

[Support_helps]

Hello, apologies if this may be repetitive in the Group but I'm now about 3 months into my renal limited vasculitis diagnosis and one of the areas I find mind boggling is that of proper dieting. There is no shortage of information out there but a lot of it seems to conflict. Would be grateful if anyone has any sources that they have found particularly useful, with good results and which are fairly consistent across alternative sources. Thank you!

[Main1234]

hi sorry you have been recently diagnosed but welcome to the group.

When you mean “proper” diet do you mean for your kidneys ? If so the support information from Kidney uK gives excellent advice on diet etc.

Have you accessed the FB page for vasculitis, lots of support from people who are going through the same.

Wishing you well, I’m sure people will post who are coping with kidney involvement to offer their advice/support.

[Support_helps in reply to Main1234]

Yes thank you kidney diet, I will check out Kidney OK//🙂

[AmyS1]

Hello the best and most professional advice for renal diets is a registered dietitian, registered with HCPC.Your renal specialist nurse should be able to put you in contact

[Support_helps in reply to AmyS1]

That sounds good let me do so thank you!

[eh66]

To add to the good advice that has already been said, as someone who had kidney involvement and is now in remission with average kidney function my age, I avoid ultra-processed foods which often have inflammatory effects, and the converse of that is my diet consists of a lot of whole foods, nuts, fruits and vegetables with plenty of fibre , which generally have anti-inflammatory properties. A qualified dietician will be able to advise you on what's best for your specific condition.

Home mixed nuts; walnuts, brazils, almonds, hazel, cashew , red peanuts, pumpkin seeds

[Support_helps in reply to eh66]

Thank you very much, I was wondering about nuts because of the relatively high protein content and the fact that I am trying to get my good fats from virgin olive oil. I find my protein limit gets taken up very quickly and that is definitely a pain point at the moment. I am totally off processed foods, gave up alcohol which was really really tough, low sodium and limited to 2.5L water per day. I can take this up by 0.5L if I do heavy cardio. The dietary and lifestyle change has been extremely challenging to say the least. I am happy you seem to have found your solution, congrats!

[Warralife in reply to eh66]

This is really interesting. I was told by my dietician to avoid whole-grain, nuts, pulses etc as they put too much strain on my kidneys, yet these are the type of foods which we are encouraged to eat for a healthy balanced diet! It’s an absolute minefield!

[eh66 in reply to Warralife]

The world of diet is moving on very quickly, and I am not convinced a lot of dieticians are keeping up, let alone rheumatology and nephrology consultants. But my consultant did say life style does have an impact on the outcome. That said it is a minefield in which we often left to fend for ourselves. Everyone reacts differently to different foods sometimes by very small amounts and some times by larger more impactful amounts which can be positive or negative. When you have these sort of serious conditions, a qualified dietician with knowledge of the condition should be a game changer.

I always try to go to medical meetings with a list of questions. They can drive the meeting and have a positive outcome on your health.

[Support_helps in reply to Warralife]

Yes short of weekly blood tests to to monitor protein, sugar, electrolytes etc I'm just doing some "trial and error" to see what works and does not. The obvious "no's" like processed foods / sodium are easy but I get conflicting inputs on the so-called healthy, organic foods and that's the minefield you mention. But it sure is good to know I'm not alone in this endeavor and sharing experiences here really helps a lot as I also play them back to my nephrologist who is open to listen and taken inputs that I find.

[eh66]

That is a pretty tough situation. In your case nuts could be problematic, but olive oil has a lot of benefits. It sounds like you really need to get on board with good dietician.

[Support_helps in reply to eh66]

Yes right now my nephrologist is advising me but I will ask him about a licensed dietician, thank you again.

[Halebopp]

I, too, was diagnosed with renal limited vasculitis almost 10 years ago. I have seen a renal dietitian a couple of times & my nephrologist is also in agreement with the dietitian. The more current thinking on a healthy renal diet (I’m 3A/B-right at the borderline) is whole food, plant-based. I eat almost no meat, eggs, or dairy. My CKD has been stable for at least 8 years & my Vasculitis has been in remission for at least 9 years. I use olive oil & eat plenty of nuts & seeds. I’m 77 years old. We’re all different, but the research seems to be overwhelming in support of a Whole Foods, plant based diet for overall health.

[Support_helps in reply to Halebopp]

Thank you that is very encouraging and I have definitely seen much literature on "plant based". So far I'm sticking to light boiled white fish, organic tofu, plus small amounts of organic chicken breast but no red meats. Virgin olive oil for sure as I need those healthy calories. No cow milk but use organic oat milk for breakfast cereal with a bit of flax and chia seeds. Lot's of apples, blueberries (with organic yogurt), watermelon and vegetables. Still having the occasional hard boiled egg but maybe need to cut that out in favor of other protein. I'm trying to set up an appointment with a proper dietician this week. 3A/B sounds like about what I can target too. Best of luck in your ongoing journey and thank you for the details 🙂

[Halebopp in reply to Support_helps]

Good luck with the dietitian and good luck on your journey. My nephrologist also orders labs every 3 months. That keeps a close check on everything. The fiber in whole grains and beans/legumes and some vegetables & fruits help keep potassium down. A lot of that potassium can’t be absorbed in a high-fiber diet.

[Grizzly-bear]

Late to this but I went into kidney failure with vasculitis and my vegetarian, low salt, low sugar, low processed diet seems to be having a good impact on me - I'm now on the safer end of CKD2. It can take years for kidney function to pick up so don't lose hope if you're getting slow results. I'm still seeing improvements in my kidney function 3 years later.

Just as important as monitoring your diet is monitoring your blood pressure. Even slightly elevated blood pressure can hamper progress with your kidneys, regardless of diet, so be sure to ask for medications to keep it under control if it isn't currently.

[Support_helps]

This is so great thank you for that, it gives me a lot of hope and optimism!! 🙂