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I have been getting many personal messages regarding my kidney disease, so I thought I should be a little bit more detailed in what I am dealing with for those that are wanting to know. I really can't give any advice other than what worked for me and honestly, kidney disease is an interesting disease because there are so many varying factors. What works for one person does not necessarily work for another.

My diagnosis was Interstitial Nephritis based on a biopsy in July of 2010. At that time my creatinine was 5.3 and they said my kidneys were functioning at about 10%.

I did not know I was this sick. I went to the ER for what I thought was bronchitis and walked away with this diagnosis after a week of hospitalization. Shocking, to say the least.

I was then diagnosed with Celiac Disease and Crohn's Disease in January of 2011. I went gluten free immediately.

Let me just say that my kidney disease has no known cause. My doctors are still unsure of why my kidneys have failed, and why I am maintaining for the past year. They totally expected me to be on dialysis by now. However, my creatinine has moved into the 3.0 range and none of my labs are consistent with complete kidney failure. So we wait... The doctors are baffled.

I eat as healthy as I can, but honestly I have not been 100% compliant on McDougall in the past for very long, partially because of the challenges of all my diseases and partially because of my own lack of will power. It was too difficult to try and balance all the nutrients. So, then I just ate gluten free (but adding occasional dairy and meats). I have continued to stay in a low protein range and gluten free, but other than that... there is nothing really consistent I have done to "maintain" my kidney disease.

Now I am getting much more intense about getting healthy and I am eating a 100% whole food plant diet, gluten free... according the MWL plan that Dr. McDougall offers. I am not counting anything. I am just eating. I will watch my numbers and see what happens. If I end up going a bit high on potassium, I will lower my veggie intake a bit. If I am too high on phosphorus, I will switch back to white rice. But for now... I am taking the recommendations of Dr. McDougall (in the information he has given about kidney disease on the site).

I hope this is helpful.

I know that at 10% you are literally hanging by a thread in terms of dialysis. All you can do is what you think may help. Kidney disease is such an under the radar issue unless you have it. But it's actually a large issue in the western world. We have several members with compromised kidney function and probably many that don't know it. Your experience will be helpful to many. Most of us know the basics such as keeping protein low but much beyond that is uncharted waters for us. Like you, my health drove me to full compliance. Wish I had been smarter earlier. It would have saved me a lot of grief! I am convinced that a strict regimine of eating, rather than "moderation" would have helped in my case because of so many years of poor dietary habits. I think moderation can be successful in those that have previous histories of better eating. I certainly didn't. We don't think much about our kidneys till there is a problem then we find out just how valuable healthy, functioning kidneys are.
Good luck.
f1jim

This is so true. My kidneys were on a slow slide to failure before I began McDougalling. From doing urine dipstick checks I knew I had been spilling protein for many years, and my BUN/creatinine ratio was abnormal. Both of those problems have disappeared on McDougall.

As Jim says we don't think much about our kidneys, but kidney failure is a common cause of morbidity and mortality and it is not a pretty way to go, as any hospital worker can tell you. Please people, think of your kidneys and take care of them. Dr McDougall has some Newsletter articles about this.

Congratulations Pacificfords on doing what almost no one else has done. You had the courage to take charge of your own health.

This rings incredibly true for me as well. I thought I knew all about nutrition growing up, but I only knew what was mainstream. Those were the things I paid attention to and followed. This past year for me has been a journey of moderation. That worked okay I suppose, but with that came education. Now I wonder... what this year would have been like for me if I had been 100% compliant. So many things would be different right now based on the health issues I CAN change. Knowledge is definitely power.

One of the things I loved about the video (The Rave Diet) was when Dr. Esselstyn was talking about how people call this style of eating extreme... and then he started showing pictures of surgery, bypass, and stints... then said... "some people would call that extreme." What a statement! And so true.

Careful how you use that term 100% compliance. It upsets a lot of people around here. Funny, those that have had their chest opened up, or had major organ failure never seem to be bothered about the term. No one is putting anyone down over their choices but for me and many others it would have been a far better life to have done it earlier. I consider myself lucky to be walking the planet after the mess I made of myself for decades. Blindly thinking I was fine and invincible. Ever wonder where the point was that if you had started you would not be dealing with this? It's water under the bridge now but I do think about it. I wonder what percentage of kidney function my diet took away from me and when that will kick in. Will eating this way stave off any issues? How much permanent damage is there? Only those that deal with this think about it. I know that every time I shower I see the scars and wonder. I bet every test they give you you wonder. It makes you want to take those that don't think about it and shake them. Wake up! Before it's too late. I think about how small of a price compliance would have been 15 years ago. It's so obvious now.
f1jim

Yes... I was one of those people that cringed every time I heard the term 100% compliance. I got irritated at the thought of having to be extreme. I argued and tried to make my point and my excuses on a daily basis. I just didn't get it. I am not saying that moderation won't work for some, but it certainly didn't work for me. I thought it would, but it didn't at all. Not once. I suspect if people were a little more honest with themselves, like I am now being, they would find that as well. Then again... maybe not.

You are right, it is water under the bridge, but I wonder all the time what my life would be like today if I had made better choices. What I focus on now is that I have a chance to have a happy and healthy "rest of my life." My grandmother passed years ago, but I will never forget her... an amazing woman with an incredibly unhealthy diet. She hobbled around, overweight and miserable the last many years of her life. She couldn't go anywhere or do anything. She was on oxygen. She had heart disease, lung disease, and many other issues that I can't even remember. I don't know how many times people have said how like her I am... and I can't help but picture myself that very same way without any changes to my lifestyle.

What is even more shocking to me is that I thought I felt good. I knew that in my day to day life I didn't feel great, but much of it was attributed to "you're getting older." I know better now. I was getting sicker. Day by day. If it hadn't been for that mysterious bronchitis I thought I had which took me to the ER that night - who knows how much longer I would have gone in my unhealthy patterns. I feel sad when people say "it won't happen to me." I said that too. But...It happened to me.

I imagine what it would have been like if I had listened to my body. I had been getting my leg cramps for almost a year before I was diagnosed. A prime symptom of kidney failure. I was getting them nightly. My eyesight was also going two years before my diagnosis... and I laughed when people said "you are aging, it is natural." Also another sign of kidney failure. There were so many little things I did not listen to. Big things too, I guess. They just didn't seem that important... food was important.

When it comes to my digestive issues (Celiac and Crohns) I also didn't listen to my body. I had horrible issues but thought is was nerves or irritable bowel... or food poisoning. When I looked at the celiac.com site and scanned the symptoms... I had almost all of them for quite some time. I had become so used to being sick that I didn't know I was sick. Sick was normal to me after years and years of unhealthy eating ~ that combined with making excuses

I am wide awake now... out of my fog and denial. Life means so much more to me than living with "moderation." I want to be extreme. Blissfully Extreme!! I can't say that is how the first 40 years of my life went, but it is certainly how the next 40 is going to go!

One of the things I have learned since becoming sick and dealing with doctors is...

You are your own best doctor. I have experienced much in the last year with specialists and medical care and one of the things I found most important was to learn how to read my lab work. It took time to understand what each test was about, but it has been lifesaving for me. You see... most doctors really are not about being preventative. They simply wait until you reach a point to be medicated or treated. I experienced this several times within my treatment.

One incident was with my phosphorus levels. I did not understand what that was about. Over time I learned to monitor my phosphorus and came to the realization that diary made it go very high. There are other things like soda and chocolate that attribute to it, even brown rice, but for me it was cheese. In going high... the phosphorus, which the kidneys can no longer filter as well, becomes dangerous and begins to pull calcium out of the bones creating a high risk for osteoporosis. The renal diet recommends cheese as an important protein. I listened for a while, wanting to trust that information. However, my phosphorus went high and what did they do? Medicate with a phosphorus binder...13 pills a day with various meals. The reality was... stop eating dairy!!! I pulled my phosphorus back down quickly when I did this and I did NOT take the medication. I keep it and use it if I eat a meal especially high (like lots of brown rice), but I don't use it regularly and my phosphorus is under control. These are the things doctors won't tell you or maybe they don't even know and you have to really be listening and learning to figure it out. Of course the option is to eat whatever you want and just medicate, but that is not my choice. It never will be. After an entire year I am still on only one medication, avoiding 6-8 others that have been prescribed. I have learned how to manage without those drugs by eating properly and will continue to do that even more so I can get off the last medication (for my blood pressure).

PF, you are an inspiration. Thank you for starting this thread. I hope it helps others and explains CKD in understandable terms for those unfamiliar with it.

Great going on the 100% compliance!

Hi Pacificfords. Thanks for all this information.

And all the inspiration.


I find it funny that people call this extreme eating when it is really just the way people always ate... and what people eat now with all the chemicals to me is the extreme eating.

Thank you It has been a challenge, but one that keeps getting easier and easier.

Checking in with you and hoping things are going fine for you.

Have you had to change anything since your last labs?

Hi Jellen,

I am due for another set of labs on Friday. It has been a couple of months since the last set. I was pretty happy last time as things seemed to be improving. The doctors tell me that I cannot improve. I find it interesting that when my creatinine goes up, they say my condition is getting worse, but when it goes down, they disregard it. Their feeling is that once you are in severe failure (a creatinine of 2. or over) that the numbers don't really matter. I don't necessarily believe that, but I really don't know. I started with 5.3 and have moved up and down a bit leveling off at 3.0 for months now. I still have hope. I am hoping this new direction in my diet will help to heal my body even further. I will be anxious to see how Gluten Free McDougalling 100% affects my labs. It will be my first attempt at not obsessing over every little thing I eat and just enjoying my day without all of the counting, weighing and measuring (even on the moderation of McDougall I did this past year). I will post when I get my lab results. I see my nephrologist again on December 13th. I am looking forward to that appointment.

I'm guessing that doctors don't believe a person can improve because they have never seen a patient following this way of eating. I think docs get discouraged all the time because from what I've seen as a nurse, lots of people won't even follow a conventional diet (ie our national food guides) for reasonable health.
Hang in there, and be their first surprise!

DW's nephrologist indicated that she wouldn't improve either. When he saw her, her creatinine was 1.4. Neither the nephrologist nor her rheumatologist have said a word about diet.

When we found out that she had kidney problems, we did some research online and bought some books about kidney disease. She stopped eating some things (gluten, corn, citrus) just to be safe. She also stopped eating beans and legumes to reduce her protein intake. (We have eaten by the McDougall plan for about 15 years so dairy, meat, high fat, processed food, refined carbohydrates were not in her diet before an autoimmune disease started hurting her kidneys.)

Her creatinine level has been at 1.0 for the last two lab tests so we know that she can improve.

That is really good news. Thanks for sharing.