Low Protein Diet

Has anyone tried the Walser low protein diet supplemented with essential amino acids from Calwood Nutritionals to treat minimal change disease?
We have begun this as an alternative to prednisone, cytoxin, cell cept...all of which we have had rounds of for 7 years.

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No sorry BUT I have heard about this amazing diet please kep us posted!!

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Good luck with it. I would be too afraid of the kidneys failing altogether to stop my meds.
Please let us know how your experiment works out.

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When you say "we" is there more than one of you?

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I have FSGS (diagnosed 4 years ago- but probably had it longer than that). Have been on the very low protein diet for over 2 years and as I am a short girl - weighing 105 pounds, only allowed 15 grams of protein/day. The diet has helped a great deal and I am currently in a partial remission (GFR greater than 60, creatine .79 with urine protein fluctuating between .49 and .79 during random samples (not a 24 hour urine). I do take Prograf but my dosage is less than one third of the dose I was taking pre-diet (3 mg daily). I do believe patients in Dr. Walser's study were medication free but when I tried no immunosuppressant at all- my urine protein started going up. Unfortunately, I have little guidance and I do not know of anyone that is familiar with the diet- my nephrologist just goes along with it and checks my labs. I do supplement with Aminess Amino Acids from Gambro (the only supplement recommended by Dr. Walser that is available in the US (as far as I know). I eat tons of veggies (more so of the low protein ones, base protein amounts on the USDA list of protein in various foods). I buy pasta and bread from Cambrooke foods and make my own tortillas, bread etc with flour from Taste Connections (check the internet-not sure if available overseas). I have been wanting to add a bit more protein to my diet but unsure if it would have a negative affect (did I mention no guidance?).
Good luck, lets hope for a cure soon. I am tired of swelling and facing the possibility of dialysis, transplant, etc. * *Be sure to speak with your nephrologist about the diet

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Do you know what your albumin and total protein levels in your blood are? Just wondering how it might affect that.

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Thanks for the note, my wife and I are working through this together, therefore the "we." I, the husband, am the affected party and she is my essential support team. She has diligently looked at various dietary opportunties to keep my protein intake lower than 25g/day and has been very successful at creating interesting meals under that limit.

I was diagnosed with MCD near the end of 2003 and would be considered a "frequent relapser" who is "steroid dependent." I have been on Prednisone, Cytoxin and Cell Cept (the last two sometimes in combination with Predinsone). I have been in "remission" twice since 2003 for more than a few months but the MCD is somehow triggered and I wind up on significant doses of Prednisone, tapering to lower doses as the Proteinuria drops lower than 1g.

The Prednisone is problematic for me with weight gain, bloating, bone wasting and general ill health. Near the end of 2010, while on the Cell Cept, my Proteinuria began to rise above 3g and the Doctor wanted me back on Prednisone. I resisted because of the above reasons and my feeling that, at the end of the day, it was not honoring to God.

We looked for alternatives to Prednisone and began the supplemented very low protein diet (SVLPD) mid-December of 2010 (I was still on the Cell Cept - the literature I read indicated that steroids would interfere with the effectiveness of the SVLPD - I understood that Cell Cept is not a steroid, but is intended as a steroid alternative). We understood that this approach would take some time, perhaps years, to see remission, but we felt this a better alternative than a life of steroid dependency.

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To hope4health: Thanks for your note (see my other reply above for a brief history). I have plotted my lab values from August through end of September of 2010 as being the most immediately relevant data. At that time my Proteinuria was at the level of 2g, but my kidney function appeared to be stable on 1g Cell Cept 2x daily.

[I should make a correction to the above history in that my Proteinuria at end of November 2010 was ~4.4g.]

My serum Albumin level went from 3.5g/dL (11/10) to 2.8 (mid-January 2011) after being on the diet about a month. I increased my Essential Amino Acids (EAA's) intake and in less than two weeks my Doctor took additional lab work at my appointment and the result came in at 3.0. I was encouraged with this although my doctor wasn't impressed.

I am still working through the details of determining a "correct daily dose" of EAA's to supplement the very low protein diet, since the rate of rise in serum Albumin levels seems to be tied in some degree to how much EAA's I take.

While every person is uniquely created, there may be some general principles that would be useful to as I determine how much protein to eat, how much EAA to take, how to control the changes in cholesterol as I change my diet and my proteinuria changes, etc. I am trying to figure out what these general principles are as I go along.

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To FSGS: I wish you success in your efforts to bring the FSGS into complete remission. Some of the things I have learned about the supplemented very low protein diet (SVLPD) are (1) the research literature is sparse, and more so for non end-of-life kidney issues like the MCD I face, (2) the recommendation by Walser of 0.3g/kg/day is based on your ideal weight and includes the amount of EAA's you take, and (3) the diet will likely take some time to produce results in my case.

In order to better understand the items I listed above, (1) I spent time reviewing the research papers for indicators that the SVLPD would negatively affect my health while I took the time to try a more natural treatment - my conclusion was that, as long as my GFR was above 60 (true), my serum Albumin level was not much lower than 3.0 (true), my creatinine level stayed low (true - below 1mg/dL), and I could see that the rate of increase in Proteinuria values (now ~6.7g) was slowing down (sort of hard to visualize without graphing the values), then I am probably ok, even though my doctor is not happy about the numbers (I know my cholesterol is increasing, but I consider that being strongly tied to the Proteinuria in my case, which I trust will go down as the Proteinuria goes down - we shall see...).

(2) As long as I check the protein numbers on any labels for the things I eat (and track fresh foods with web site information on protein values) and keep the total definitely below 25g, but ideally probably 21-23g, then I feel better and my weight, although varying, seems to steadily drop to the ideal weight goal (though not more than 2 lb/wk).

(3) Having essentially just started I did not want to post without substantial success, since I am just in trial here, but as long as my values, although elevated, are not dramatically negative, then I will continue on this diet and see how well I do. I will keep this group posted as things progress.

As to an alternative EAA supplemental source, I am using a product by Calwood Nutritionals called Nutrasentials. The product can be purchased in powder form that mixes with water. I have found the Lemon Tea, Lemonade and Cherry to be best tasting for me. As I stated above, I am finding out how many scoops I should use since each product appears to be different in serving size. My conclusion at this time is that I need to take at least 1.5 to 2 times the serving size recommended 3x daily (generally after each meal) and it is probably better if I do not eat after 7pm. I will be taking the EAA supplements in the amount of approximately 1.5 to 2 times the recommended serving size 3x daily and see how the labs are in four weeks, for potential future adjustment.

If you decide to try Calwood Nutritionals, they also have "chewable" supplements, which are good for "on the go." You will have to try them to find out which kind taste best for you.

As to taking immunosuppressant medication while taking the EAA's, I understood from the literature that steroids will block the effectiveness of the SVLPD. I stayed on the Cell Cept (see above posting history) for the first six weeks after starting the SVLPD because I understood that Cell Cept is a steroid alternative immunosuppressant and would probably not affect the SVLPD. As my Proteinuria increased, my doctor was making comments, suggesting to me that the benefit vs risk of taking the Cell Cept is no longer positive.

Therefore, I began to cut back on the Cell Cept in early January and finally abandoned it altogether after my last labs came in and the doctor called about my increased Proteinuria. He was wanting to get me back on the Prednisone (which I have been resisting against his recommendation in order to try this SVLPD). There was a couple of days period of adjustment and I do not see any real negative to going off the Cell Cept. It is clear to me that the Cell Cept affected the way my body functioned and it is probably better that I am off it.

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Thanks for your reply. I believe and hope that Prograf is not a steroid. Prior to starting the diet, I told my doctor that I could not be on steroids which he indicated was not a problem as I had just stopped taking prednisone after a long taper-too long ( I am with you and will avoid taking it again at all costs!!). I will look into your amino acid supplement but from what I read Aminess is the only recommended supplement in the US. They are expensive (approx $80.00/month and not covered by insurance). My blood protein is 5.4 and my albumin is 3.1 taking 15 tabs per day, but maybe I need to take more ,in order to get those levels up, as I only eat 15 grams of protein per day. I just requested 2 of Dr. Walser's research articles from our local medical library and should receive them soon and will let you know about any new information ( I would like to know at what point do you stop the diet??).
Good luck to you. I believe I would not be as healthy as I am ,considering that I have a pretty darn awful disease, if it were not for the diet. I think you will benefit-just keep tabs on your labs with your nephrologist.

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