Reversing kidney disease and pre-diabetes.

[rozzle]

I am new here. I have prediabetes and now signs of early kidney disease. Have been intermittent fasting and on low carb, grain free, sugarfree diet which keeps sugar levels down but suddenly my potassium and albumin/creatinine have shot up. When I look at cutting down on protein and K-rich foods, my options for enjoyable eating become very limited. My cholesterol level is slightly high but ratios are excellent. I also struggle to keep weight levels up. Any suggestions for an eating regime which may help are welcome.

[Michael__S]

You can't reverse a kidney disease. What you can do is to take control of your health and slow down the disease. Any eating regime that you choose should be supported by your medical team. Ask to be referred to a renal dietician or if you don't have access to one, to a RD.

I am no expert. I am surprised that you don't eat grain at all as whole grain have a very low glycemic curve but also contain other mineral such as phosphorus which may or may not be a source of concern for you. I don't know enough to say it's a fact but if you eat too little carbs and end up in ketosis it could lower your blood PH which in turn might contribute to metabolic acidosis kidney.org/atoz/content/met.... My understanding is that it could further damage your kidney. Not all low carb diet are ketogenic.

I don't have suggestion per say but what is your medical team suggest that you do?

[userotc in reply to Michael__S]

To my knowledge, there's no evidence suggesting ketosis can lead to acidosis, with the latter attributed to diabetes. In fact the link below indicates it is unlikely.

healthline.com/health/ketos...

I'd be interested to know if anyone's medical/renal team has advised on anything re low-carb diets for prediabetics. My mum's "team" of NHS nephro and GP have offered nil diet advice in >4yrs or even suggested adding a dietician to the team.

[Michael__S in reply to userotc]

Interesting but this article is intended for an healthy individual, not someone with CKD. What I am saying is that it may or may not be a concern and that it's best left to professionals. All that I know is that metabolic acidosis can be an issue with CKD and ketones are acidic. I don't know at what level it may or may not be desirable.

Searching the web for "keto diet CKD" yield conflicting results and I think it's a good example where it's best to stick with reliable source and stay clear of websites promoting miracle cures. This search yielded both. Yes this article state a "may" healthline.com/nutrition/da... and there are studies that seems to point in both directions.

I still think it's best to follow medical advices. I didn't read it all but I have been unsuccessful at finding any information/guidelines regarding keto diet with CKD from the NKF. That in itself I think warrant caution. kidney.org/professionals/gu...

[userotc in reply to Michael__S]

Thanks. We both agree that medical teams should advise on dietary matters but, as indicated, our personal experience is negative. Hence we've had to adopt DIY so far, with some good results in terms of serum data albeit less so urine.

In the absence of such support, isn't it natural to seek info elsewhere? But with caution, as illustrated by the respective healthline links we exchanged on the potential mechanism of keto leading to acidosis. Both articles have weaknesses, particularly no evidence/data links.

If anyone has positive, dietician experiences on this specific matter, it would push us to seek such support despite mum's nephro.

[Michael__S in reply to userotc]

To be honest I don't believe that a GP can nor should be the most important part of your medical team when it comes to diet. That's what renal dietician are for, or if you can't have access to one a Registered Dietician. GP do serve their purpose and from my personal experience they generally point in the right direction (e.g. eat less protein, stay active) but are not tooled to go much further and I had mixed outcome when they do. There are GPs that have the interest and passion to have that more specialized knowledge but to me they are the exception not the rule. I also had the same experience with my (ex-) Urologist. Very vague recommendations.

Yet specialists are specialists and should he/she had seen any specific issues that needed to be addressed he/she would have done so and I would have followed them and worked with my RD on how to best do that. My GFR was still in the low 60s back then and Diabetes or high blood pressure are not a source of concern at the moment. I am to meet with a nephrologist in less than a month and I am very interested to know what his/her concern are and whether mine are legitimate, options for my ongoing hydronephrosis and so on.

One more reasons why your medical team is a team even if you are the communication hub is that you need to follow their advice and not have them work against each other because it suits you better. It won't do any good. It's not because they have no specific concern today that they won't have any tomorrow or in 10 years from now. If/when they do you need to make sure that the rest of the team is aware and understand the reason behind any contradiction, if any. What I mean by that is that it would be counterproductive if not outright dangerous to have your nephrologist to tell you that you need to further restrict or do thing X and ignore him/her because you are going in a different direction with your RD. Then what would be the point to have a nephrologist and a GP if you don't listen to them?

That by definition makes them a team. If they are not it's your job to make it happen and it's a lot safer than scouring the internet to try the flavor of the day. Don't get me wrong, I don't think that you should blame yourself for DIY your diet and you are certainly entitled to your own opinion. My personal perspective is that following diet X that is not part of any guidance (it might be but I have not found it) is akin to an experimental treatment without the safeguard that participating in a study can provide. I would assume that a keto diet study conducted with CKD patient would take the proper care to monitor the blood PH and possibly balance it with supplement as required.

What I am saying is that there are tons of nutritional information available from the NKF for free that have been vetted by scientist and to me it is the safest path out there. Look at the link from my comment above, yes you can navigate its content and its links for days on end and I think you should at least navigate it and perhaps use it as reference. There are also tons of information that have been digested and directed at the patient. Personally every time that I read something that is not from the NKF I assume that there might be an element of risk associated. Davita also have a lot of great content but if I were to read something that I am not certain I will look at the NKF website for cross-reference. Or the Linus-Paulin website, I like its content but it's not intended for CKD patient and I need to navigate that website carefully in that sense.

As for my experience with my RD (registered dietician), it has been very positive. I don't know how those title work in the UK (NHS mean UK?) but in Canada it is very similar to the United States. A Registered Dietician has to go through a rigorous process eatright.org/food/resources... and they have to follow the science. It put them in a situation where they can give dietary recommendation in order to manage a medical issue or disease. My best advice is to find one that you feel that you can work with him/her and have the most honest discussion possible. Nutrition still vary between individual and your DIY effort are still going to be very much useful as there is still room for experimentation. If food X isn't digested well you should work with him/her to find alternatives for example. There are still boundaries for ratio of fat vs carbs in your diet and it's for you to put the effort to find what works best. Whether you want to be dictated what to do or to know what you can experiment with is a discussion to have with your RD.

A renal dietician as the name imply is more specialized toward CKD and it's something that I need to discuss with my nephrologist. I may or may not be entitled to one right now (specific to where I live) and even if I do I might still work with my current RD to better keep me within boundaries as I can consult as often as I see fit. I don't expect the renal dietician to be that readily available as I am merely at stage 3a right now. Something I will learn next month.

[Skeptix in reply to userotc]

I am pretty sure a vlpd+keto would come as complete news to my nephrologist. And would be waaay beyond the scope of my GP's ability. I'm educating my docs, not the other way around.

Which is not to say they can't come in useful and pick up something I ain't thought of. But them at the spearhead? Not a chance..

[userotc in reply to Skeptix]

Based purely on our negative experience to-date with nephro and GP, I totally agree - unfortunately!

[Skeptix in reply to Michael__S]

"I still think it's best to follow medical advices. I didn't read it all but I have been unsuccessful at finding any information/guidelines regarding keto diet with CKD from the NKF. That in itself I think warrant caution."

But the 2020 NKF KDQOI lists very low protein + keto acid analogues as one of two options (low protein, with or without keto). Search for the word keto in the following link.

And its not as if a bit of digging won't reveal the vlpd+keto as seemingly more effective in slowing progression than lpd.

And a word to the wise here: this 2020 update refreshes the last KDQOI which was issued in ... 2000. I wouldn't be placing quite the reliance you suggest be placed on the doctors. The science indicating the positives of a vlpd+keto has been out there before 2020.

I don't know about your doc, but my doc seemingly hasn't read the 2020 guideline and is still operating according to a 2000 mindset.

ajkd.org/article/S0272-6386...

[Michael__S in reply to Skeptix]

I could be wrong but my understanding is that Ketoacids en.wikipedia.org/wiki/Keto_... and Ketoacids Analogues ncbi.nlm.nih.gov/pmc/articl... are two different things. I think that Figure 1 of the second link along with the second paragraph of the introduction depict what KA are. Therefore I don't think VLPD + KA have anything to do with a ketogenic diet. Not to say that it won't be part of a discovery in 2 or 20 years from now but I don't see mention of a Keto diet in the guidelines. I have seen a few positive studies but were limited at stage 1-2 and are not that recent. Yet it's not in the guidelines.

Again, not all low carb diets are ketogenic and you don't need to do a ketogenic diet to use fat for energy.

As for the doc, I can only repeat myself. That's what RD are for.

[shortmat in reply to userotc]

You will find that the NHS is simply not interested in kidney problems ; getting any dietary advice - let alone an eating plan - is not available.

[userotc in reply to shortmat]

Yes. Already effectively discovered that mainly via mum's nephro. We have received nothing that resembles renal advice in 4 years. So mum has had to follow diet & wellbeing guidance from me and dad based on my training and the internet. If necessary, we will go private in future.

Sounds like you've had similar experience?

[shortmat in reply to userotc]

Yes, I have even needed to pressurise GP into arranging blood tests at 6 month intervals instead of annually. When I requested a referral to a dietician for a low protein/low potassium/ vegetarian/weight loss eating plan he brushed me off. I have never been referred to a renal consultant either, so I soldier on just doing my own thing! My opinion of the GP service has nosedived in the last few years , & with covid even more so as they appeared to shut up shop completely.

[rozzle in reply to Michael__S]

thanks for your reply. Doc has not commented on my results or suggested an appointment - very early indications. I will request more tests in a month or so meanwhile cutting back on proteins(have been getting increasingly heavy on meat and dairy), while increasing greens etc. The weird thing is Im actually feeling well!

[Michael__S in reply to rozzle]

I strongly recommend that you meet with a renal dietician, this is exactly the kind of discussion that you can have with them.

[orangecity41 NKF Ambassador in reply to Michael__S]

I have CKD level 3, on a CKD diet, and have hyperuricemia. My Doctor prescribed allopurinol and it has lowered the hyperuricemia figure.

[WYOAnne NKF Ambassador]

Once damage has been done to your kidneys there is no reversing it. Many on this site have been able to stabilize their CKD with diet, exercise and drinking plenty of water.The first thing you need to do is see a renal dietician. Your nephrologist should be able to help with that. Everyone is different, so a diet to follow should be specific to you. Bring copies of your labs with you. Depending on your lab results you need to watch sodium, potassium and phosphorus...but a dietician should be able to help with that and your prediabetes.

For now, look at previous posts from Healthunlocked, under TOPICS on the right of this screen - DIET AND NUTRITION.

Learn as much as you can about your CKD. Do you know your cause? You can go to davita.com and sign up for a virtual kidney class. Knowledge about CKD makes this all less scary. It also helps with questions you may have regarding your condition.

Best of luck to you....

[Darlenia]

Hi Rozzle. You're definitely on the right track in exploring your dietary needs in maintaining your health. Unfortunately, the vast majority of those diagnosed with kidney disease are diabetics - as is my hubby, a Diabetic Type 2. Sadly, diabetes destroys the small blood vessels inside your kidneys (as well as eyes, limbs, etc.) so it's critical that this erosive action is halted as quickly as possible. During our descent into kidney purgatory, we quickly discovered that we needed to create our own path to wellness by blending the "renal diet" and the "diabetes diet". As most know, diabetes is largely fueled by sugar and carbs (which convert to sugar) so keto style meal planning is essential. On the other hand, controlling protein and electrolytes through a renal plan is also important for those with kidney disease. Throughout, limiting processed foods is always recommended for everyone. When we're at a crossroad, we put most of our focus on the diabetes diet since that's the monster behind my husband's kidney decline. In our journey, we quickly discovered our renal dietician was of little use to us in addressing our needs - she urged my husband to eat fruits with high sugar content, high carb rice and bread, etc. We were stunned and very disappointed. So we immediately contacted our primary doctor who took over, giving us carb guidelines, in concert with our nephrologist. Suggest everyone meet proactively with their doctors to figure out the path forward. You're prediabetic and proactive, so this bodes well for you. I sense you will live long and well!

[rozzle in reply to Darlenia]

yes its about finding a balance. I have been tending to overdo the proteins maybe - put on a kilo, keeping blood sugars down but suddenly after my last tests a year ago which were very good, the albumin readings in urine are up as are potassium in blood. Sodium is down which is a plus. Dont know about other trace minerals/ electrolytes. Have started taking a little baking soda every day and cutting back on potassium and sodium even more and no scoffing meats and dairy - my greatest eating pleasure since foregoing sugars and carbs. Am increasing veg like cauli onions and celery while limiting the dark leafy greens. Will ask for more tests when next bloods are due in 3mths and see how its going. Thank you for your encouragement!

[userotc]

As you'll note from the responses to-date, some appear to have had positive CKD experiences with medics but others have unfortunately not.For my mum, we are in the latter category so have to do it largely ourselves. Hopefully youll have more luck..,but at least you know you're not alone, if you don't. Good luck.