Minimal Change Disease and Diet

[ChefDuane]

I was diagnosed with MCD about 15 years ago. I relapsed several times, and my creatinine levels kept rising. At my worst I had a GFR of 14. I was already on a low sodium diet. It was suggested to me that I try removing as much animal protein out of my diet as possible. When I made this change, I started feeling better within two weeks. (I know that doesn’t happen with everyone.) This diet change had the greatest impact on my kidney disease. Today I’m in complete remission. Has anyone talked with you about diet?

[brynat2]

No, we haven't spoke to anyone about diet restrictions. his doctor just told him to avoid salt.

[Bassetmommer NKF Ambassador]

Hi Chef,

Diet is so important and making a lifestyle change is hard and takes time. Yes, it can in many cases improve or at least stave off decline.

There are many of us who love to cook and bake and have successfully modified our recipes to accommodate renal function.

I would love to set up a place here on the site where people can post their favorites.

Is anyone interested in doing this?

[MarBea in reply to Bassetmommer]

What a wonderful idea!

I am not ashamed to admit, I am learning how to cook in a healthy manner at 58.

A site where we can share and post recipes, would be marvelous.

[Zazzel in reply to MarBea]

Me too! I was never a big meat eater until I met my husband who likes a lot of meat. I’m not great at cooking it, so going mostly plant based has been fun for me. I enjoy cooking again and I’m even getting him to eat more veggies!

[Bet117 NKF Ambassador in reply to Zazzel]

Myself as well!

[htpi1543 in reply to Bassetmommer]

excellent idea. Need any help, let me know. every such effort requires monetary support. I am ready to contribute.

SAM

[drmind in reply to Bassetmommer]

Oh, please consider setting up that site of favorites. Im struggling now in tryimg to alter old tecipes, find new ones I like, and find alternative ones it would be so appropriated

[orangecity41 NKF Ambassador]

The CKD diet my Primary Doctor put me on over 3 years ago is working and progression has slowed down. I was diagnosed at 3b.

[Mirell]

Hello!

Great to hear you’re feeling better and that the diet changes works for you 😀

In may this year I was diagnosed with minimam change disease, it took a long time before it showed on blood test or got very bad. I’ve had swelling for almost 2 years (that got worse in the months leading to the diagnosis and hospital stay). My nephrologist suggested that my plantbased diet (vegan for over 5 years), may have eased the pressure on my kidneys and slowed the progress. That’s interesting! I make alot of food from scratch as well, which is a lot healthier. There is so much amazing recipes to discover once you’ve taken the step!

I have a question about the disease if you dont mind? Not so often people write about it here:

But normally minimal change disease doesn’t impact the renal function, right? My gfr and creatinine levels has always been good. I think I’m having a relapse now (im now on 2,5 prednisone), started leaking protein again. But I have this inner fear that my renal function will decline, paranoia I guess!

When you are having a relapse, how quick does it show on the blood test? The albumin levels f.eks.

My GP ran som blood a week ago and I haven’t heard back from him ( he said he call if something showed). But I’m experiencing some of the symptoms, the swelling is ver mild, but foamy urine and 2+ protein on urine test.

(I have a follow up appointment with my nephrologist next Thursday though).

Sorry to hijack your post!

Hope your health continues in the right direction😁 take care!

[Bet117 NKF Ambassador]

Hi Chef Duane!

Happy to hear about your remission!

One of my close friends has MCD ; identified in 2016.

You are absolutely correct that we are all different and our bodies respond differently. She was initially treated in the UK and now lives in Ireland.

When I met her she was on an obscene amount of prednisone and Lassix as it took her a year to be able to wear shoes as she was so full of edema. She was also found to be steroid resistant during this time.

I know that she was advised to restrict the sodium and watch the animal protein as well as the dairy.

She increased the plant base but never went totally plant based or was advised to do so.

She had 100% faith in her doctor. UK is different as they see a GP until something is very problematic . She did look into Forks over Knives but did not follow it long term. I asked about a dietician; she was never referred.

After 3 rounds of Rituximab, Cyclosporime and another immunosuppresent she has reached partial remission.

To my knowledge she monitors the sodium as she has a lassix prescription as needed. Protein?

You know that it is a personal choice; like you, I prefer the plant based and have done well with it.

My nephrologist and PCP are on board with it. I also spoke to a Renal Dietician who was as well.

My thoughts. Read, speak to your doctor and dietician.

Please reach out again!

Your news has warmed my heart!

Bet

[shouty]

Just found this after come home from hospital with preliminary diagnosis of MCD after Nephrotic event. Have lost so much oedema gone from 82kg to 62kg. Going from 8 and half stone to 13 stone was huge shock. On high dose Prednisone & meds for all the side effects of MCD. Hoping not to relapse 🤞 early days. Just to add to it all was told Covid positive on day I was discharged. Hope this finds you feeling well.