Goodbye, nephrotic syndrome!

Joanna posted this intriguing and wonderful tale of nephrotic syndrome reversed with wheat elimination:

No more nephrotic syndrome since starting
Wheat Belly–this is MASSIVE. I need to share my story Dr Davis.

I’m 30, I had heavy proteinuria [protein loss in the urine] for years. I went strictly wheat-free in July, 2012, and today I discovered its down to 0.5 g [per day]. No meds, just my interest in nutrition, in particular my 10 months on Wheat Belly. I’ve lost 20 kg [44 pounds], I weigh 54 kg [118.8 pounds] now, zero fluid retention, and the receptionist at the doctor’s office didn’t recognize me.(I last saw her 9 months ago.) Wheat Belly has been the catalyst for a miracle in my life.

I was diagnosed with nephrotic syndrome when I was 21. I was holding so much fluid in my legs and around my eyes and no, I never had a cause, the words of my doctor.

I wasn’t diabetic but, boy oh boy, I was a bread nut my whole life. I had actually been working in a bakery for the previous two years (a large Australian chain). I constantly craved pastry, doughy scrolls cakes, etc. Renal specialist put me on high dose prednisolone (albumin [blood protein level] had fallen to 14–yikes!) and the best that these AWFUL drugs could do was raise it to 21. I begged him to get me off the steroids due to horrific mental side-effects, so I came off them very slowly (year and a half) and I’d been losing on average 4 g of protein a day, but there was no way I could live on those tablets.

Causes of this awful condition include longstanding diabetes, kidney diseases such as membranous nephropathy and postinfectious glomerulonephritis, and amyloidosis, and lupus. Deteriorating kidney function can proceed at variable rates, but typically results in complete kidney failure over a few years, necessitating dialysis, else it is fatal.

I embarked on a mission to heal myself. My dad’s partner is a nutritionist in England and she started talking about wheat-free. July 25, 2012 was the first day of the rest of my miraculously healthy life. I quit wheat cold turkey after reading the Wheat Belly blog: pennies were dropping everywhere I looked on this site–acne, cravings, bloating. So I thought, hey, my kidney thing is autoimmune as well, so this might work.

Well!!! I have never had a waist in my life. I now have this amazing hourglass figure (‘scuse the self compliment!). I’d been an apple my whole life. My blood and urine results came back yesterday and they prove a miracle. Most incredible was my protein loss down to 0.5g [per day]. Blood pressure lowest range of normal (I was on meds for that most of my 20s). The inflammation that was ruining my kidneys had almost completely vanished.

Health is the most important thing, but being an Aussie size 8, never going hungry and being so clear in the head and full of energy are wonderful perks of this life–not diet–life. Friends are converting too. This is a revolution. And I thought I’d be on dialysis before the age of 40. It’s the weirdest and most amazing feeling, stumbling across a completely healthy life. Sorry for the rambling, but people need to know wheat causes serious, serious disease, not just minor ailments.

Oh and albumin has shot up to 40 . . . No steroids!!!

Amazing. Truly amazing.

Nephrotic syndrome is a serious condition that, as Joanna describes, involves continual loss of protein in the urine. In other words, the kidney loses its capacity to retain protein molecules in the bloodstream, allowing them to leak into the urine, causing a peculiarly frothy urine. Protein loss means proteins in the bloodstream (serum), such as albumin, fall into abnormally low range. Proteins not only perform crucial functions in various organs, but exert oncotic (osmotic) pressure to keep the body fluids where they belong, including in the bloodstream. The loss of bloodstream protein therefore allows fluids to leak out of the bloodstream and into the legs, lungs, and other areas, causing significant and disfiguring edema (swelling). Peculiar phenomena like blood clots in the kidney veins and legs can result from loss of specific proteins, such as antithrombin-3.

As often happens, nephrotic syndrome has been described in association with celiac disease, which then falsely leads many people to believe that it can only occur in association with celiac disease. But it can occur just with wheat consumption without positive transglutaminase or other celiac antibody markers.

Obviously, a single case does not constitute proof. But the stories of success in our wheat-free lifestyle continue to pour out so quickly that there is insufficient time to pursue the clinical trials that confirm cause-effect relationship in every instance. In the meantime, we enjoy these wonderful stories of apparent wheat-free success that requires no drugs, biopsies, procedures or costs!

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Comments & Feedback...

  1. Alice

    Amazing story. People think it’s such an unreasonable sacrifice to give up wheat. But I’m finding it to be the opposite. Oddly, after a year off wheat and 48 pounds lost, I find I can have treats like ice cream and chocolate without having to count calories or worry about my weight. I eat a fair amount of fat in the form of olive oil and coconut oil as well as whole eggs. I don’t count any calories or portion my food. So for me it’s had the counterintuitive effect of being quite freeing.

  2. Uncle Roscoe

    One cause of nephrosis can be an autoimmune attack against aquaporin-4 (AQP4) water channels. These channels are a class of potassium channel which regulates the flow of water across membranes. I believe the problem is widespread. It commonly goes undiagnosed, because it mimics other conditions. There are two points of AQP4 antibody concentration, 1) optic nerves from retinas to visual cortex, and 2) the kidneys.

    Which point of AQP4 concentration a patient gets depends on his/her individual weakness. Physicians tend to recognize the visual attack either as age-related retinal damage or as multiple sclerosis. Physicians tend not to recognize the kidney attack as an autoimmune attack at all.

    Autoimmune diseases happen when antigens, usually ingested antigens, attack tissue. The immune system responds by attacking the antigen and the tissue. The antigen can cause either form of AQP4 damage without eliciting antibodies. With or without AQP4 antibodies, one form of progression can lead to anti-nuclear antibodies and systemic lupus. Another form is the kidney failure you described, Dr. Davis. Anyone who reads the time-v-survival statistics of dialysis patients should come away in tears. Dialysis is virtually a death sentence.

    Being a celiac disease sufferer I always release zonulin, and my intestine is always porous. I was already abstaining from fructose and grassy grains. So when I got visual impairment, headaches and kidney stones I started testing other foods. I discovered that dairy, yellow corn and egg yolks were my causes. I deduce that casein, lutein and zeaxanthin are my offending trigger proteins.

    This is serious business, and is poorly understood among medical practitioners. Stop ingesting the offending foods early in this progression, and these diseases can simply vanish.–induced_nephrotic_syndrome

  3. Nikki

    This is a very interesting story to me. Every time I have had a urine test (I’ve had several since the age of 12) I have been told there is protein in the urine. I never thought much of it because no doctor has ever indicated that it shoudl be a cause of serious concern. I wonder if that would happen now that I’ve been following the WB way of life. I haven’t had any reason to see a doctor in quite a long time since eliminating wheat from my life.

    Now if only I could find a doctor who would do the thyroid blood tests I want and then take the results serious, then I might actually lose the extra 50 pounds I’ve still got…

  4. Jennifer Snow

    My mother has had a recent tragedy due to nephrotic syndrome caused by primary amyloidosis–her newlywed husband became very ill and died only about a month after they married. It was very sad. Both of them are paleo-style eaters who don’t consume wheat. So don’t assume diet will be enough to fix every health problem.

    • Uncle Roscoe

      To me, my case reveals that wheat acts as a vehicle which places other food-based antigens into the bloodstream. Stop ingesting wheat, and it will help. But to a very large portion of wheat sensitive people, removing wheat does not remove the wheat-related porosity. If other food antigens in the bloodstream cause the damage, then it’s still diet related, and those antigens must be eliminated in order to correct the problem.

      • Boundless

        > But to a very large portion of wheat sensitive people, removing
        > wheat does not remove the wheat-related porosity.

        I’m reading “The Fat Switch” by Dr. Richard J. Johnson, MD. Chapter 20 is loaded with dot connection on how fructose ingestion can cause intestinal porosity. Dr. J., alas, seems to be unaware of the hazards of gluten-bearing grains, and neglects to report their presence in any of the data that he’s relying on.

        He reports on the prevalence of Sugar Cane Kidney Disease (aka Sugar Cane Nephropathy) and describes a fructose pathway that could explain it.

        Anyone with this syndrome probably needs to drive both their wheat and sugar consumption to zero. Yes, “sugar”, not just fructose. Switching to pure glucose is no solution. Even though glucose is more benign, humans can and do convert glucose to fructose (polyol pathway).

    • Boundless

      As if these kinds of losses weren’t sufficiently tragic as is, they may become all the moreso if it later discovered that avoidance was at hand. My dad died young of causes that I now consider to have been completely avoidable, had we only known at the time.

      > … paleo-style eaters who don’t consume wheat.

      As Uncle Roscoe points out, it may not be just the wheat, or even the carbs.

      > So don’t assume diet will be enough to fix every health problem.

      I don’t think anyone here thinks so. This isn’t a religion (yet, and let’s keep it that way :)). It’s about outcomes.

      Going low carb grain-free eliminated all but one of my health issues, but that one may still be diet-related. It will take a deliberate course of eliminate/re-challenge to see if it responds to something in the diet I haven’t changed yet. I’m thinking dairy is the next thing to rule in/out.

  5. stephen ottridge

    Dialysis only extends your life when kidneys fail. I read that this is about 5 years when on full dialysis. You don’t want to go there.

  6. Tyrannocaster

    Dropping wheat: the most devastating thing you can say to a skeptic is “Try it. What have you got to lose?” There really isn’t any good response to that which isn’t irrational. If there’s no improvement, fine, eat your wheat (ugh). Really, what have they got to lose?

    • wrotek

      i dont get it. If It costs no money to quit for some time, why not try? Unless u gave up already

  7. DJ2003

    I have been wheat free for 6 years now. At first I lost 10 pounds, but have gained that back. I am also being treated for Sarcoidosis and Adrenal Fatigue. These are tough diseaes to overcome, but I am making progress. I really don’t believe I would have come this far if I had not eliminated wheat back in 2007.

    I was advised to try it to help with the symptoms of iritis. It didn’t help my iritis too much (it was sarc indused) but it did make such a profound difference in the GI and joint pain distress. I was advised to stay wheat free for 2 weeks before I would see a difference. On the 5th day my husband took a look at me and said, “You feel better don’t you?” The answer was a loud YES! I have not looked back, I am seldom tempted to indulge in a cookie, or even chocolate cake. I am a chocoholic. But kisses keep that satisified.

    Thank you for letting me add my 2 cents worth.


    • > I have been wheat free for 6 years now.

      Also low carb?

      > … I am a chocoholic.

      Not a problem, per se. Unsweetened chocolate is not a significant carb load, and doesn’t have major issues with its other components, other than the omega 6 fats, which aren’t an issue in modest amounts. The problem with “chocolate” is that what’s on the check-out stand is rarely unsweetened. Most chocolate confections are loaded with sugar, if not essentially chocolate-flavored sugar.

      > But kisses keep that satisfied.

      A case of chocolate-flavored sugar. 6 Hershey’s Kisses is your entire one meal limit of 15 grams net carbs. There is more sugar than chocolate in them.

      Switch to chocolates that are either 80+% cacao, or confections sweetened with xylitol, erythritol, stevia or other low-carb alternatives.

  8. Geoffrey

    The negative effects of wheat are astounding, and the health benefits I feel have been amazing. I’ve never felt better or stronger. However, I just had blood work with my doctor and my cholesterol levels are high. Background: I’m a 45 yo male, 5’10”, and weigh about 141 lbs. I have never had high cholesterol, and here are my new numbers: Total: 286, Triglycerides: 57, HDL: 81, LDL: 194. The doctor is freaked out by these numbers, but the irony is again I’ve never felt better.

    Anyone know how to interpret these? Dr. D, are you around? I do eat a lot of eggs and my doctor wants me to cut that consumption at least in half. Thoughts?

    • Boundless

      Was that “LDL” a calculated or measured value (I’ll bet calculated).
      If measured, was it LDL-P?

      Click on the “Cholesterol” Categories link at left for a primer on this topic.
      for more than your doctor knows.

      Dr. Attia, by the way, has recently said that Part X of his series will discuss why some lipid measures, for people on LCHF diets, cause traditional doctors to needlessly freak out.

      • Geoffrey

        Thanks boundless. the LDL was just regular or, as I just found out, calculated (I did the math!) LDL cholesterol. I read Dr. D’s primer on it and from what I can tell my numbers are fine, even if my doctor doesn’t think so. The 57 triglycerides are really good, and the high HDL is good too. But, if my doctor had his way I’d have started on a statin yesterday.

        I have been completely off wheat and all high glycemic foods since early January. My diet consists of chicken, fish, eggs, nuts, veggies, olive oil, seeds, and some dairy. I use whole milk in coffee and tea and eat the full fat plain yogurt.

        • Boundless

          > But, if my doctor had his way I’d have started on a statin yesterday.

          See the movie “Statin Nation” for an expose of the defective science and promotional fraud behind that particular snake oil. My impression is that other than a handful of people with rare lipid conditions, nobody should touch that stuff. Any doctor that pushes it raises serious questions about the state of their medical knowledge.

  9. wrotek

    Folks, do you think other-grain breads can contain wheat contamination? Perhaps by mistake or perhaps intentionally cheated?

    • Boundless

      Rye and barley breads can be made from strains of these gluten-bearing grains that are indistinguishable from wheat in their metabolic effects. Commercial GF breads are largely junk (high glycemic) and at least one brand has been caught massively misrepresenting their net carbs. Who knows what else they misrepresented. A lot of GF food makers think GF is a fad, being indulged in by people who don’t “need” to avoid gluten. You can imagine what that can lead to.

    • Tyrannocaster

      Of course they can – if they are made in the same facility as wheat-based breads, made on the same equipment…you don’t really think these places are going to put in separate sterile lines of production for the wheat-free stuff do you? There may be some company that actually does this, but if they do they probably shot it to the skies to let everybody know.

      I can’t even buy stuff in the grocery store’s bulk foods section because even though I don’t have Celiac I am so sensitive to wheat that I have problems from the contamination that gets into the non-wheat goods there – they have bins of flour too and you simply never know when they will change them, swapping them in the process. I have learned this the hard way.

      • wrotek

        interesting, but that kind of sensitivity could have been iterpreted as prychosomatic by some. I wonder if it can be objectively measured.

        • Uncle Roscoe

          I have the same level of sensitivity and worse. I know, because I get sick when I ingest even the smallest amount of wheat. The pathways to wheat illness lead through two sets of immune reactions as well as two classes of immune reactions.

          Immune reactions are triggered when the immune system detects even the tiniest amount of an antigen. Given that the medical science supports this level of sensitivity, the “prychological” imbalances seem to manifest instead, on the side of the accuser.

          I suggest you walk a mile in my shoes before engaging in this kind of trash talk.

          • Barbara

            Numerous people have written about their strong reactions to wheat after not having any for a long time. Seems the longer you abstain, the worse the reaction from indulging in wheat. Everyone is different, but as Dr. D. often states: your body does not like poison! Obviously your body will react in some manner to poison once it has been cleaned and normalized. IIf standardized tests were really available, don’t you think they would be utilized?

            Too often in the past the medical profession disregarded wheat as the culpret in many ills. Since they didn’t have any answer to your complaint or didn’t want to be bothered trying to find out what was ailing you, they called it psychosomatic, wrote a bunch of prescriptions and referred you to someone who would listen to your problems. Many still don’t believe that wheat can start the inflammation cycle despite patients getting good results from being wheat free.

          • wrotek

            unfortunately i cant walk a mile in your shoes uncle Rose.
            Dont take this as an offense, maybe simple allergic tests could point to wheat sensitivity

          • Uncle Roscoe

            Allergy tests test for immune reactions. An allergy reaction to wheat would test for antibodies to wheat. As has been stated MANY TIMES on this board 1) Wheat damage can occur without any immune reaction whatsoever, and 2) Wheat-caused intestinal porosity means wheat ingestion is a vehicle which places many other antigens into the bloodstream.

            Please show us the tests which identify 1) all the types wheat damage which happen in the absence of immune responses, and 2) all damage, with and without immune responses, which happen because wheat allowed other antigens into the bloodstream.

            I’ll be waiting.

  10. dahdum

    Great to hear this report! I have been diagnosed with IgA nephropathy, an autoimmune disease which causes me to have dark brown urine during an upper respiratory infection due to red blood cells in the urine. I have persistent microscopic hematuria even not during these upper respiratory infections.

    I learned that there is a link between IgA nephropathy and wheat, with good evidence of a GF diet helping IgA patients. I now have been off of wheat for four months now. My most recent upper respiratory event was three weeks ago, and I still had dark brown urine.

    Here is my question: Is there anyone out there who have helped this condition by eliminating wheat consumption? Does anyone have any idea how long of a time is reasonable to start looking for results? I have had good effects in other areas of my health, so I am not planning on eating wheat again. Just curious.

  11. wrotek

    “”Seems the longer you abstain, the worse the reaction from indulging in wheat””

    yes i had this twice, ingested chinese packaged soup and other time some croissants . These were two trials i wanted to check out the toxicity. My stomach hurt like hell, had cramps and bloating.

  12. Snapdragon

    I want to know if wheat can cause UTI (urinary tract infections/chronic) or due to Leaky Gut (autoimmune issues) and is it related to wheat? Will elimination of wheat help curb UTI infections? I have been on years of antibiotics for UTI which feel can or has damaged “villi” in intestinal tract. I get ripping pains before a bowel movement and either diarrhea or constipation. Preplexed, but am going with the no gluten / no wheat diet. I have eliminated breads for 1 month now and feeling better. Am I on the right track?

    • Dr. Davis

      You are on the right track, Snap, but it may not have an impact on your urinary infections. This is one of those rare conditions, such as car accidents, that may have nothing to do with wheat!

    • Cranberry

      Hi Snapdragon, have you ever tried cranberry juice for UTIs? After being hospitalized for a kidney infection as a child (sulfa drugs helped), then suffering subsequent bladder and UTI infections over the years (for about a decade after that), seemingly made worse by birth control pills (and/or sexual activity itself) along with the back & forth seesaw between bacterial versus fungal infections & the respective teeter totter of drugs pushed for those, I learned from my mother to wear cotton underwear only, occasionally bath instead of shower to really clean better also to “air out” once in a while rather than staying all moist “down there”. From my grandmother I learned to take small amounts of cranberry juice (the unsweetened stuff works fastest but if all I can access is the sweet then I water it down in a litre of filtered water). I have been able to avoid or curb UTI infections easily with a number of such practices and habits designed to keep those bacteria in check. I hope you find relief.

      • Cranberry

        Afterthoughts for Snapdragon. Cranberries are my big guns but I also avoid must one certain brand of powdered laundry soap as it guarantees a flare up if my “delicates” are washed in that. PLUS, I monitor my urine for colour. If it gets yellow (or worse, orange) and murky/foggy, time for more filtered water. It is hard for me to think there is no link at all to wheat consumption and bladder stuff because last week my urine was all clear but this weekend i’m having wheat at every meal (ugh) because I’m testing for antibodies next week and after just two days of it, despite drinking litres of water, my urine is no longer clear but is murky. Mind you, I don’t feel bladder infection discomfort but imagine I would if not for all the water I drink….just saying I’ve noticed the BIG difference & my bladder seems to be having to work plenty hard to expell whatever that murky stuff is.

        • Cranberry

          So great to hear everyone’s experiences with avoiding wheat. It has me paying closer attention and for that I am grateful. I’ve half-heartedly avoid bread for about 15 years (cheating often) because I thought it was just the yeast causing problems or maybe some other issue & hadn’t thought it through except to notice that even wraps weren’t the greatest though gluten-free burritos gave slight relief. Now I’m eager to fully quit wheat cold & eat clean to see what results. As mentioned I’m testing for antibodies and just adding in some wheat these past two days has my nose, inner ears and scalp annoyingly itchy, my muscles tight and achy, my joints hurt more than usual, my stomach rumbly, indigestion in the form of belching/farts, a sore spot in my tummy, bright red blood in my now darkened and more sticky stool, murky urine, fatigue, and feeling rather anti-social. Regardless of what lab tests are or are not capable of showing next week, I’m going off wheat and sticking to protein & vegies.

          • Barbara

            Snapdragon and Cranberry,
            Another helper is taking a probiotic containing a strain called saccharomyces boulardii which helps dissolve candida imbeded in intestinal or ut. walls along with the unsweetened cranberry juice or pills. No sugar eaten. No wheat eaten.
            I believe that your wheat damaged intestines and your uti are connected, even though most MD’s will say they aren’t.

            Years of antibiotics have done their job! They have destroyed your intestinal flora. You must take probiotics ASAP to replenish the bacteria! I have found that probiotics with as many strains as possible do the trick. The 50 billion cfu dose Dr. D recommends is a good guideline for your problem. Worth every penny you spend because you are healing faster. You can buy a lesser dose and build up to 50 billion. You should get some relief in a few days, but need to take the probiotics for several months or until you sense that your gut is healed and uti gone. You will know that because your urine is clear, stools are long, soft and not smelly.