How Much (Or Little) Protein Should One Have While on Dialysis?

Previously, I wrote about our somewhat daring experiment to replace dialysis treatment. Nicole was getting tired of heading into the clinic. Why wouldn’t she want to have all the blood pumped out of her body, put through a machine, then pumped back in? Maybe it’s the pain of the long needle going into her arm. Maybe it’s the sudden changes in blood pressure and electrolytes. Maybe the other patients snore too loudly.

Well, really, it wasn’t any of these. It’s more so that we are concerned that dialysis interferes with the actual healing of the kidneys. It appears to pull off too much magnesium and other nutrients. It’s essentially a guessing game for the doctor and staff how much and how “deeply” to filter her blood. It also introduces inorganic sodium and blood thinning medication into the blood.

So, instead, my wife was trying a combination of a salt-free diet, four saunas sessions a day and external use of urea to pull electrolytes and water out of the body. All this, as we reported, worked quite well for normalizing her water weight. Her blood pressure would hover around 100/70 (better than most teenagers). The only trouble was her urea and phosphate levels. They weren’t going down. Instead they doubled, according to her blood work.

We haven’t been able to figure out a way better than dialysis for getting these two acidic components of her blood down. So, instead, we started considering the other possibility: Why not stop putting them up in the first place?

Both phosphates and urea come from the same source: High-protein foods. Namely, meat, but also nuts, beans, eggs, etc. Why not just eliminate these foods? I know, this isn’t a new idea. There are actually many who hold the position that those on dialysis should eat a diet containing virtually no protein-rich foods.

I’ve written about it before. Particularly, the controversy. For example, a study in the Clinical Journal of the American Society of Nephrology showed that dialysis patients who ate a low phosphoorus diet didn’t live as long. Of course, the low phosphorous program they were on may have included phosphorous-binding medication. Such dangerous medication may have explained the reduction in birthday parties more than the lack of protein in the diet.

But, of course, this raises the question: If a person on dialysis could do fine without any fish, beans or nuts, why wouldn’t someone who isn’t on dialysis? It gets at the old (somewhat nauseating) debate of how much protein do humans really need to be eating. Many of the hardcore vegans would argue that foods already contain adequate levels of protein. Some such plant-based believers, however, look like they are lacking muscle tone. Big muscles, however, isn’t a big concern for Nicole. Since going on dialysis, she put her dream of becoming a world champion body builder on hold.

As far as I can tell, from my reading, not many amino acids (protein) show up the in the urine. So it’s not like someone with kidney failure would be retaining more protein than someone with functioning kidneys. The body, of course, can convert excess protein into glucose. So, I assume, rather than waste extra protein, the body burns it.

Thus, we have this one possibility: That most of us are eating far more protein then we need. The body uses the excess protein for fuel. The accompanying excess phosphorous and urea are removed by the kidneys into the urine. Protein would therefore be a rather taxing way to produce glucose in the body. Great if there’s nothing else to eat, but possibly not the best source of energy.

Of course, many aboriginal cultures, such as the Pirahã of Brazil, live off a diet of 60-80% fish. They are known for their fit bodies and exceptional emotional health. Yet, they also have an average life expectancy of 45 years (according to Daniel Everett’s book, Don’t Sleep, There Are Snakes). Too much meat? Or do they die young because of the rum parties they like to throw?

Already, Nicole had scaled back her protein to about 30g per day (mainly 4oz of chicken, eggs or lamb) per day. But even at that level, her blood work was showing high levels of urea and phosphorous. Even more evident was that her breath would often smell like urea and her finger and toe joints show signs of uric acid build up.

So, 14-days ago, we decided to test scaling back her protein intake dramatically. She’s only eating two protein rich foods in the form of a shake after dinner. The shake is simply homemade almond milk (made from 1/4 cup of soaked almonds) and 1 raw egg with a TB of coconut oil and 1/4 tsp of cinnamon.

Otherwise, her dinner consists of four cups of cooked high- and low-carb vegetables and plenty of ghee. She’s obsessed with a spice blend of freshly ground yellow mustard seed, black peppercorns, grated fresh ginger and fresh garlic. Lastly, we add some raw apple cider vinegar (which, reportedly, can help lower uric acid levels). For breakfast, she’s having a medium-sized homemade, salt-free, sourdough bagel which I bake from freshly ground buckwheat. She has a bowl of cooked chard on the side. All with plenty of ghee.

Yes, we’ve upped the carbs from her regular ultra low-carb type-1 diabetic diet. We had already gone this route before cutting back the protein. Why? Hemoglobin and thyroid issues. I’ll explain more about this in another post. But, needless to say, if she has to cut the protein out of her diet, it’s hard to feel satisfied eating only vegetables and butter.

Two weeks have past and she reports having no cravings for protein foods. Muscle tone and energy seem to be about the same. It’s made me even begin experimenting with less protein in the diet. I do difficult and carefully measured calisthenic exercises each morning. So far, cutting the protein in half has had no negative effect on my strength.

What has been very surprising, though, is that despite eating a diet low in urea-producing foods, Nicole’s urea levels appear to be as high as ever. Several times per day her breath will contain a strong ammonia smell. It’s strong, if not stronger, as when she skipped dialysis. What’s going on? Here’s my best guess: Uric acid seems to be easily stored in various places in the body. I think her body is taking advantage of the break to clean house.

Otherwise, we can’t say we’ve seen any dramatic change in Nicole’s health since going off the protein-rich foods. Urine output has remained the same. Weight is the same. Coughing is the same. Sleep is the same. Restless legs are the same. Of course, it may take until her body finishes cleaning out uric acid deposits before we start to see some positive improvements.

But Nicole says she’s enjoying the low-protein diet. She always preferred just eating big bowls of vegetables. It probably helps alkalize her blood stream, which the last blood test said was becoming very acidic. It also helps save some money – since organic cabbage (her fav) is far cheaper than organic lamb (which she only liked because it wasn’t beef). We’ll see how it goes in the long run. So far, no problems.

Thinking outside the type-1 matrix,
–John C. A. Manley

P.S. You can read my previous article on the risks of following a low-protein diet while on dialysis here.

P.P.S. The best solution we know for getting urea levels down is two functioning kidneys. Key to making this happen for Nicole is a total dental revision. Find out more about this experimental surgery and consider donating at kidneykarma.com. Such financial support will help ensure the continued production of this Diabetic Dharma e-letter. Even $5 is greatly appreciated.

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