My Efforts to Educate the Scientific Community

[notnowdad]

I have written an article about my RLS experience which I have been working to disseminate in the medical and research communities. The bulk of the article follows:

The medical community is generally unaware of the benefit of a low oxalate diet for treatment of RLS. In 2015, after 5 years of closely observing my body’s reactions to various foods, I began posting on the rls.org discussion board for “Non-prescription medicines, supplements and diet” that I could switch my RLS discomforts “off and on” by adjusting the amount of oxalate in my diet. I was eager to find out if my approach could help other people. I had no significant responses for over a year, but I kept posting. A few people asked questions but only one contributed his results during the first three years of my crusade. It took several years, but eventually I was able to develop a group of participants who would consistently exercise the necessary discipline to produce the same results. These are quotes from the discussion board, mostly as replies to my posts which I wrote under my assumed name of “notnowdad”:

5/8/2016, tommy108 wrote:

In summary, I am 100% certain the disappearance of my symptoms was a result of a low oxalate diet.

12/21/2019, wilabozo wrote:

I’ve been on a low oxalate diet for about 3 weeks, had ups and downs, but now starting to feel really good, no sign of RLS for 3 days, and I’m off all medication.

2/4/2020, wilabozo wrote to me in a private email:

I’ve had the most amazing 2 nights RLS free. I could feel a deep relaxation in my legs that I haven’t had before. Feels like they are healing. If someone had said to me three months ago, you can have a few nights RLS free/drug free by just following a diet, I would never have believed them. Now 2 months into the diet I have achieved what I thought wasn’t possible. I’m actually looking forward to going to bed tonight!

6/26/2020, XenMan wrote:

Please stick to this as most people don’t try because they claim diet doesn’t seem to impact them, or they don’t see any quick improvements and give up.

5/24/2021, Deb212 wrote:

Several years ago I started weaning off RLS meds as I was experiencing augmentation. I’ve been medication free for 15 months. I was afraid I would never sleep again and then I found this post.

6/22/2021, Einszwei wrote:

I’m still on the low oxalate diet and it’s still working great for me. I have almost no symptoms and can sleep through most nights.

8/6/2021, Deb212 wrote:

One thing that really helped was Jim’s information about how the offending food shows up 24 hours later. I was always looking at a closer correlation between eating something and symptoms but have seen it is 24 hours or the next night almost always. Please know I appreciate all your information and that you are sharing your ideas.

4/17/2022, Deb212 started her own post to encourage people to try a low oxalate diet. She included the following:

Today I look back on one year ago and my desire to end suffering from RLS. I really didn’t expect a happy ending. Thanks to “notnowdad” and his excellent information on oxalates and their impact on RLS, I have a life that is worth living!!!

8/23/2022, Einszwei wrote:

I have the utmost admiration and respect for your continued research and your documentation of everything that is helping you with your rls symptoms. Thank you for sharing your experience. I have been on a low oxalate diet for close to 2 years now and my symptoms have continued to subside.

Even though I have succeeded in confirming that a low oxalate diet can help others, I have been a bit disappointed that the handful of positive respondents has seemed like a small number when I consider that my most influential post on the discussion board has had over 63,000 views. However my work seems to be more highly regarded than I realized. On 9/24/2020, I posted a reply to a person who asked for guidance on the HealthUnlocked website in Great Britain. Another person, Accipiter, who saw my suggestion wrote the following:

Is this the “notnowdad”? The legend who started all this and an inspiration to us all who found relief through low oxalates.

Additional insights required for success with a low oxalate diet:

Over the past seven years my support for my fellow RLS sufferers included three key new insights that helped to account for why it can be damnably difficult to achieve consistent relief from RLS by using a low oxalate diet.

1) Because of my sensitivity, I could precisely correlate my intermittent RLS discomforts with some vegetables (e.g., fresh artichokes and asparagus) that are reputed to be low oxalate. After much digging on the internet I found on the website of a food storage warehouse company the information that many fruits and vegetables are typically sprayed pre- and/or post-harvest with an oxalic acid solution to “preserve freshness and nutrients”. Organic fruits and vegetables are typically not so sprayed.

2) When I switched my daily magnesium supplement from magnesium citrate to magnesium glycinate I had return of RLS discomforts. This led to my understanding that over-production of oxalic acid in my liver is stimulated by glycine supplements and that endogenous production of oxalic acid can cause me to have RLS discomforts.

3) Over time I realized gelatinous, meat based soups and stews could also give me RLS discomforts. I attribute this to the glycine in gelatin. Most websites that give guidance on low oxalate diets state that meat and meat products are not a problem. Some of those websites are now mentioning that scientists have learned that eating gelatin raises urinary oxalate.

My plausible explanation for RLS (as posted on rls.org 7/14/2021):

I have gotten almost complete relief from RLS by following a low oxalate diet. I have read some of the scientific studies concerning our bodies’ utilization of iron and tried to come up with a possible explanation for what happens in my body when I experience an episode of RLS. However, before I share my ideas I need to make clear that my version of a low oxalate diet includes avoiding glycine supplements, gelatin and gelatinous soups and stews because these foods stimulate my liver to produce oxalic acid excessively.

Because researchers have established that lower than normal levels of iron in the brain and cerebro-spinal fluid may exist in all RLS sufferers, I assume that condition pertains to me. And I assume I have a low ferritin level. However, the fact remains that, without addressing these bio-markers in any significant way, I have achieved almost complete relief of symptoms. And, when I do “slip up” and trigger an RLS episode, the discomforts arrive on the day following the dietary mistake and last less than 24 hours.

My theory is that my body’s chronic low iron level makes it critical that my body’s systems do an impeccable job of distributing iron to all the places where it is needed every day. And the oxalate/oxalic acid interferes with that daily distribution.

Iron is typically bound to transferrin (the body’s distribution vehicle) with carbonate. However, oxalate can take the place of carbonate as the binding agent. Scientists have found that when oxalate takes the place of carbonate the bound iron is “locked up” so that it doesn’t release from the transferrin and, I assume, distribution is not accomplished.

Because our bodies have a greater iron binding capacity than we use on any given day, mine is able to bring additional resources into service and correct the situation within 24 hours, assuming I eat correctly on that second day. It might even make sense to say that the unpleasant sensations in my legs are a signal from my body to move around and increase circulation in order to expedite the restoration of normal iron distribution.

I think it is critically important that scientists look more closely at the mechanisms which lead to the liver producing inappropriate amounts of oxalic acid. Some people are attempting to raise their ferritin level by taking ferrous bisglycinate and vitamin C. My experience is that glycine stimulates production of oxalic acid. And vitamin C supplements are widely recognized as stimulating its production also. I think we may also find that the augmentation which some people experience while taking Pramipexole and similar drugs is due to stress on the liver and a resulting endogenous production of oxalic acid.

Some scientists are dismissive of the idea that oxalate will take the place of carbonate in iron binding function in the “neutral pH of the blood”. It seems logical that inappropriate production of excess oxalic acid may disturb the pH of the blood. The displacement of the carbonate may eventually be seen as a protective mechanism that helps to maintain proper pH of the blood because it helps to “mop up” the excess oxalic acid.

(Note: I wrote the preceding explanation before I had my latest dietary breakthrough.)

My latest dietary breakthrough seems to be restoring my ability to tolerate normal amounts of dietary oxalate:

When I was relying solely on the low oxalate diet for relief from RLS, I would often have some very minor discomforts and/or “leg awareness” where I would be concerned that my legs “weren’t quite right”. I felt like I was always hovering on the edge of an RLS manifestation and I was only one high oxalate “trigger food meal” away from recurrence. Through experimentation I developed a new regimen which removed all remaining vestiges of RLS.

My new program consists of avoiding ingesting fluoride as much as possible while also avoiding the common refined, bleached and deodorized cooking oils made from seeds (soy, corn, canola, etc.) Fluoride avoidance entails filtering my fluoridated municipal water, eating “organic” to avoid fluoride rich pesticide residues, not using any non-stick cookware that isn’t PFOA and PTFE free, not eating canned goods that may have fluoride in the can lining, not drinking commercially prepared beverages which may have been made with fluoride rich water, and not drinking wine which may have pesticide residue. Fortunately, I don’t use any of the popular medicines that contain fluoride.

When I stopped going to restaurants during the initial CoVid lockdown I took the opportunity to experiment with avoiding the RBD seed oils. At that time I was avoiding fluoride because I thought it impaired my thyroid function. Over the next several months I went from being a person with very severe allergies to seasonal pollens and dust mites to being a person without allergies. It took me a while to realize that maintaining my allergy free state required maintaining both avoidances. Eventually I realized that my remaining vestiges of minor RLS discomforts and “leg awareness” had also vanished.

After being on this regimen for almost a year I experimented with eating high oxalate foods including sautéed spinach on many days. It was only after 23 days that I began to manifest discomforts of RLS. A few days after I terminated the experiment I realized my fluoride removing water filters had been losing their efficacy toward the end of the experiment and that may have been a contributing factor in the eventual return of some RLS discomforts. I considered the results of the experiment extremely promising and I started trying to recruit some of my fellow low oxalate dieters to try to duplicate my results. So far I haven’t had any confirmed participants in this suggested protocol. In recent months I have been consuming high oxalate foods regularly with no recurrence of RLS discomforts.

I believe fluoride damages the intestinal lining and interferes with iron absorption. Fluoride may also increase the expression of hepcidin which down regulates iron absorption. Current treatments for RLS include iron infusion and/or supplementation. Researchers in India have documented increased incidence of anemia in children in areas where the water supply is high in fluoride. These researchers suggest the anemia is due to poor iron absorption resulting from fluoride’s ability to damage the villi of the small intestine.

Inflammation of the small intestine by excessive exposure to fluoride may be tantamount to a “low grade” small bowel disease. If we think in these terms, then the following quote from Chapter 21 on “Nephrolithiasis” by Leonard R. Sanders in “Endocrine Secrets” (Seventh Edition, 2020) seems very relevant:

Small bowel disease may cause bile salt and fat malabsorption, resulting in increased delivery of bile salts and fats to the colon. Bile salts damage colonic mucosa, increasing colonic permeability and oxalate absorption. Intestinal fatty acids are negatively charged and bind calcium and magnesium, decreasing the amount of calcium and magnesium available for binding intestinal oxalate and leaving more oxalate free for intestinal absorption. Low-calcium diets do the same. Excess oxalate is primarily absorbed in the bile salt damaged colon.

My personal experience leads me to believe that the RBD seed oils are somehow “co-toxic” with the fluoride and contribute to poor fat absorption and/or enhanced delivery of bile salts to the colon.

In a chapter titled “Nonneoplastic Diseases of the Kidney” by M.D. Shahrier Amin, Stephen M. Bonsib in Urologic Surgical Pathology (Fourth Edition), 2020, in a section sub-titled “Oxalate-Associated Renal Disease” it says:

"Unabsorbed lipids bind intraintestinal calcium and leave insufficient calcium to precipitate the oxalate within the gut, thus leading to increased oxalate absorption."

A Stanford study determined that seven out of seven studied RLS sufferers had SIBO (small intestine bacterial overgrowth), which I believe is a marker for intestinal malfunction. I think we can learn something from this potentially relevant research in patients with cystic fibrosis which suggests that a problem with proper re-absorption of bile salts in the small intestine can be a progressively worsening situation:

"CF patients have an increased fecal loss of bile salts compared with non-CF individuals (44,45). It is speculated that the loss of bile salts is due to impaired bile salt uptake, secondary to alterations in the intestinal mucosa in CF patients, like thickening of the mucus barrier or SIBO (46). Because the biosynthesis of taurine is limited in humans, the fecal loss of bile salts induces an increased glycine/taurine ratio of conjugated bile salts in CF patients (47). As a consequence, CF patients have an altered bile salt composition in gallbladder bile. Due to a quantitative increase of the primary bile salt cholate, its percent contribution is higher in the bile of CF patients, at the expense of the percent contribution of chenodeoxycholate and deoxycholate (48). Theoretically, the increased glycine/taurine ratio may impair fat absorption in an acidic intestinal lumen. Due to the higher pKa of glycine, glycine-conjugated bile salts are less able to remain in micellar solution (49)." -- “Persistent Fat Malabsorption in Cystic Fibrosis”, Frank A. J. A. Bodewes, Marjan Wouthuysen-Bakker, Henkjan J. Verkade

What I believe is “The Real Cause” of RLS:

Part of the unsolved mystery of RLS has to do with the endogenous over-production of oxalic acid which seems to be the real root of the problem. We need to think in terms of a non-lethal, low grade hyperoxaluria. As I realized over time, my initial dietary relief from RLS involved not only avoiding high oxalate foods, but also required limiting glycine intake in order to limit the production of oxalic acid in my body. My recent recovery with complete relief of all vestiges of RLS makes me believe that, in addition to damaging the lining of the small intestine and thereby impairing bile salt re-absorption, fluoride directly impairs liver function in a way that leads to low grade hyperoxaluria. In the previously cited chapter from Urologic Surgical Pathology (Fourth Edition), 2020, it says that secondary hyperoxaluria may result from methoxyflurane anesthesia and offers the following explanation:

"The free fluoride in methoxyflurane appears to stimulate excessive oxalate production by the liver"

If fluoride does sometimes cause hyperoxaluria, it is probably appropriate to be mindful of which forms of fluoride are most toxic. It seems reasonable to assume that an anesthesia might be an especially effective vehicle for delivering fluoride into the liver where it may be poorly handled during the process of the liver’s efforts to clear the methoxyflurane out of the body. My daughter, who has never experienced RLS, has been a picture of good health her entire life. At her highly regarded high school she was a straight A student and an exemplary, multi-sport athlete who was recognized as the outstanding player on the varsity soccer team for four years in a row. She attended a division one public university where she was welcomed onto their highly regarded varsity soccer team. She completed a business degree in four years with almost a 4 point GPA. She attended a very prestigious law school on a full scholarship. She has been successful in her marriage, in her business endeavors and as a parent of two healthy, bright children, all while she has been staying active and getting plenty of exercise. In 2019 at the age of 41 she experienced unexplained bouts of fatigue. Blood tests revealed her ferritin level was 5 despite the fact that she was eating a very well balanced omnivorous diet that should support good iron absorption. In the RLS community there is much discussion of ferritin levels because they have become perceived as a bio-marker of significance. In all my years of reading about people’s ferritin levels I have never seen one reported as being as low as 5.

I believe that my daughter’s habit of maintaining a constantly available ongoing pot of chai tea in a “non-stick” saucepan with a fluorocarbon coating may have been the reason for her having an alarmingly low ferritin level. While I recognize tea is naturally high in fluoride and she was using fluoridated city water for brewing it, I think we need to investigate whether the fluorocarbons in standard non-stick cookware somehow “weaponize” normally tolerable amounts of fluoride and disrupt the body’s absorption and utilization of iron.

We may also consider that her city water probably had been treated with sodium fluoride (NaF). A 2018 article by Qiang Niu, et al., “Fluoride-induced iron overload contributes to hepatic oxidative damage in mouse and the protective role of Grape seed proanthocyanidin extract” includes many references to previous studies which have substantiated multiple toxic effects on the liver caused by NaF. A central problem is that NaF causes iron overload in the liver. It says that iron overload leads to “Free radical-mediated hepatocyte injury” and “oxidative stress”. And iron overload causes “significant increases in hepcidin mRNA and protein expression, accompanied by decreased FPN (ferroportin) expression”. A consequence of increased hepcidin is summarized:

"The production of hepcidin is normally regulated by iron stores, whereby more hepcidin is produced by hepatocytes when the iron is abundant, thus limiting further iron absorption or release from stores" (Ganz and Nemeth, 2011b).

A consequence of ferroportin decrease is:

"The removal of FPN results in decreased iron export from hepatocytes, inducing iron accumulation in the liver" (Ward and Kaplan, 2012; Ganz and Nemeth, 2011b; Ganz and Vaulont, 2012)

We need to evaluate all toxic effects of all types of fluoride exposures.

[Hidden]

Hi Notnow, I for one, would like to know what your theory is as to why a low oxalate diet rids people of RLS symptoms? We with RLS have small and few D3 receptors, low brain iron, and in general it is a condition of the night. I know there are numerous “things” that people (even non-RLSers) can do to build up their dopamine receptors such as intermittent fasting, anaerobic exercise and substances that are dopamine ANTAGONISTs as opposed to the down -regulating dopamine agonists. Iron infusions are given in the hope that if the ferritin gets high enough there will be spill-over into the brain - where we are very low on iron.

Sooo, with the above mechanisms in mind, what does a low oxalate diet do to address these RLS deficiencies? In my humble opinion, there are a lot of other factors at play with a low oxalate diet, or really any exclusionary diet, that might be benefitting people’s RLS symptoms. There is a tendency, with your diet especially, to eat more iron rich animal protein which can contribute to improved symptoms. There are so many foods with a high oxalate content that I bet at least some people are under severe calorie restriction with your diet, which in the long run will up-regulate the receptors. Lastly, your diet I would imagine, requires restriction of potatoes, breads, cakes, chocolates and a lot of other pro-inflammatory foods so it’s hard to know if we with RLS need to avoid oxalates (which include a lot of healthy foods) or just decrease pro-inflammatory foods as Eryl suggests.

[notnowdad in reply to Hidden]

Hi SL, My opinion is there is no right or wrong here. My inquiry into my suffering is a “bottom up” inquiry. I carefully observe my responses to foods and then I look for plausible explanations for what I have experienced. I admit there is little “statistical significance” when (n=1). I have done what I can to explore whether my responses are reproducible in others. When I looked for plausible explanations for my physical responses in the scientific literature I had many “aha” experiences. I have no way of knowing whether I’m on the right track, but my motivation is to reduce suffering for fellow sufferers as much as possible. If that can be done without medications, so much the better. The current medical response is to start with analysis of what should work and try that. I call that a “top down” approach. My preference is to start with my, and others, genuine experience and lock for explanations of why it works.

Hippocrates said thousands of year ago, “A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.” This is my goal. I have been blessed with relief of suffering and I endeavor to share my good result with others.

[Hidden in reply to notnowdad]

But you make it sound like eating an offending food (ie spinach) practically guarantees RLS 24 hours later and you’ve had many bad nights along the away and I believe you’ve had to eliminate other substances too? That tells me people have to avoid whole huge swaths of healthy foods for a lifetime. I would think twice and three times before undertaking such a diet and then not do it. Sorry 😕

[Hidden]

I know your motives are pure, but that doesn’t make your recommendation for a medically unsupervised, low oxalate diet any less dangerous. Do you know that in order for a substance to have any measurable impact, negative or positive, on RLS, it has to be able to cross the blood brain barrier? There’s some question as to whether oxalates can do this and under what conditions. And I’m sure you know that only 50% of the oxalates in our bodies are from food, while the other 50% is produced by our own bodies via metabolic processes ie the breakdown of ascorbic acid. Either way, most of these oxalates will never see our blood stream, let alone our brains. They get bound up with calcium or some other mineral in our gut and are escorted out the back door. A good percentage of whatever does make it into the bloodstream will bind with calcium at that point and quickly be filtered out by our kidneys.

Other than being a benign “anti-nutrient” that has a tendency to bind up some healthy nutrients in our guts (and thus prevent them from being absorbed into the bloodstream), there doesn’t appear to be anything inherently corrosive or toxic about oxalates. It’s not like aspartame which is a known neurotoxin or aspirin which is a known stomach irritant. In certain diseased states, it sounds like “oxalate calcium crystals” can accumulate, especially in the kidneys. When the kidneys become overwhelmed then the body starts storing these crystals just about anywhere - kidneys, joints, other organs. And there’s yet more debate about what consequences these crystals even have on these organs and tissues. These crystals aren’t like mercury or lead, I’m sure you know. The point is, you’re not even talking about this point- wherein the body is overloaded with these crystals-you’re talking about ingesting a food with oxalates in it and 24 hours later having full on RLS. You gotta give the RLS community something, anything - an article, a theory, as to what oxalates are doing to our brains. Even more so if you’re trying to get the medical community interested in your journey

Well, I’ll get you started, here’s some very interesting, short, easy to understand articles. It would be great if you provided something like this whenever you espouse a low oxalate diet. Then people can make up their own, somewhat informed minds, about the diet, in conjunction with a doctor or nutritionist:

chirophysic.co.ke/2019/01/0...

drlaurendeville.com/oxalate...

functionalhealth4u.com/comm...

In addition to the above articles, I’ll give you “a” theory (my theory) about oxalates - that I just came up with this second. Let me start out by discussing calcium channel blockers (the one or two kinds that can cross the blood brain barrier) and the fact that they worsen the symptoms of RLS because they suppress the release of dopamine. Supposedly, magnesium also inhibits the release of dopamine, while calcium promotes it. Interestingly, despite how painful these calcium channel blockers are in the short run, supposedly in the long run they make champs out of our receptors. Last I read, these blockers were in clinical trials as a potential treatment for PD. Look it up!!! Now, let’s talk oxalates. Can we agree they’re a type of calcium channel blocker? Roughly speaking? If these oxalates can cross the BBB, and in a form that isn’t already bound up with calcium (meaning not the dumping of oxalate crystals into the brain by our diseased bodies), then they will bind to calcium in the brain preventing the calcium from entering neuronal cells, much the way calcium channel blockers do. Thus, I hypothesize, that oxalates in this way may worsen, or all together trigger, symptoms of RLS, the way calcium channel blockers do. To help you even more, let’s look at the big picture. The vast majority of the world can ingest calcium channel blockers (and oxalates?) and never feel so much as a twinge of RLS. They have so much dopamine rolling out of those big, healthy, numerous D3 receptors that whatever antagonism is thrown out by these calcium channel blockers is of no consequence to them. The same is true for SSRIs and melatonin - the vast majority of the world has no problem with these pills - but we do, we have a big problem with them.

So here we are, the world, all of us, consuming high oxalate foods…every day. Does the vast majority of the world have a problem with these oxalates…absolutely not. Do we with RLS…maybe? Sadly, even if oxalates do antagonize dopamine and make RLS symptoms worse in the short run, then in the long run they are exactly what we need to up-regulate our receptors. Crazy, no?

Notnowdad, there’s a point of no return, especially when it comes to substances that are all around us and that there’s very little, if any, proof they worsen the symptoms of RLS. The above theory is completely fabricated by me. I relied on no scientific evidence, just my warped imagination. BUT, there’s actually something out there that’s similar and NOT fabricated by me and that something is histamine!!! I’ve read that histamine has the potential of inhibiting dopamine release. Something to do with H3 receptors. Anyways, histamine containing foods and histamine provoking substances in the air surround us. I wouldn’t even know where to begin to try to lessen my exposure. Move to some snowy mountain top? Eat only lamb, rice, yak butter and melted snow? To what end?In some possible fruitless effort to lower my histamine exposure which “may” be suppressing some of the dopamine released by my brain? Plus, I think the cure (if it is that) is worse than the disease! I’ll end up with arthritis, scurvy, constipation and a heart attack from living in a constantly cold, hypoxic environment and a strict diet of rice, lamb and butter.

I feel the same way about oxalates. It’s a bridge too far to try to avoid them in foods. This avoidance would have to include Vitamin C because ultimately my body breaks that down into oxalates as well.

My recommendation to you, and anyone concerned with oxalates in food, is to follow what the experts say and simply be sure to balance a high oxalate meal with high calcium foods. Parmesan cheese and calcium gummies here I come 😁💥💫 Parmesan cheese is high in histamines 🫣

[angelflonne in reply to Hidden]

Ha ha, great post, I pretty much concur with your opinion. I have spinach every day for the amazing low calories and high vitamins and minerals (looking at you vitamin K), however I believe you can mitigate the risk of kidney stones (oxalates) by cooking the spinach and or combining it with calcium, milk, yoghurt cheese... pretty much exactly what you say and I don't worry about it.

Any treatment that requires me to omit a basic vitamin or mineral in my diet unless I take supplements is a treatment I'm not going to follow otherwise go for it if you've found it helps.

[Hidden in reply to angelflonne]

Thank you. My reply was a waste of time. Never again! I missed the part of his post where he now mostly blames fluoride and seed oils. Should be called the low fluoride, high placebo diet. I won’t be responding to these outlandish posts anymore.

[RLSdaily in reply to Hidden]

Well I went down that crazy rabbit hole also Lol

I try not to read posts like notnowdad but I also got sucked in.... I do appreciate your reply.

[angelflonne]

I'm not a dietician but I do record every vitamin and every mineral I eat each day against the RDA in a spreadsheet to make sure I get enough. Looking back on your previous posts I would guess you're not getting enough vitamin E without supplements as there are very few sources with high levels (almonds, sunflower seeds).

For your vitamin A it seems you eat carrots although they are listed as high in oxalates healthline.com/nutrition/lo..., if you do want to avoid them (and sweet potato the other high source) you'll need to switch to animal sources.

You can search for foods with certain vitamins and minerals with this tool tools.myfooddata.com/nutrie... and search for the nutrient value of foods in the excellent Fooddata Central (previously called USDA Nutrient Database) fdc.nal.usda.gov/fdc-app.ht....

Apologies if you're already aware of those sites. If you're on any kind of restricted diet I would personally want to ensure I was getting enough basic vitamins and minerals without supplementing.

[SueJohnson]

Am I correct that what you are saying is that if one avoids all fluoride that one does not need to have a low oxalate diet?

[notnowdad in reply to SueJohnson]

Almost, yes. For me, I avoid both fluoride and refined, bleached and deodorized cooking oils made from seeds. The curious part is that when I stumbled onto this protocol I stuck with it because my very severe allergies all vanished. After doing it for about a year, all vestiges of mildly uncomfortable “leg awareness” seemed to have gone also. Since writing the article I have done another extended experiment in which I had spinach and sweet potatoes 2 or 3 times a week for several months. I was fine until I started baking my bread with an einkorn flour which had been degermed but was still about 80% whole grain and, I assume, high in oxalate. After eating that several times a day for several weeks while maintaining the spinach and sweet potato challenge I began to have some leg discomforts. Currently I’m taking a break from the whole thing while I deal with some other health challenges. Although I think the fluoride is the bigger problem, I can’t rule out the possibility that my positive result is also dependent on avoiding the RBD oils simultaneously.

[RLScure in reply to notnowdad]

Very interesting article: thank you! Have you considered that the flour in the bread may be the culprit for the return of your symptoms? Einkorn, while being an ancient grain, may trigger a malabsorption issue. Were you eating another bread/flour before?

[notnowdad in reply to RLScure]

This is an old post of mine. The update is that the protocol of avoiding fluoride and the cooking oils made from seeds seems to have completely cured me of RLS. I don't eat high oxalate foods every day but I have been eating spinach and sweet potatoes each about two times a week with no RLS discomforts at all. Also I don't have any trouble with either nuts or gelatinous soups and stews anymore. I did the Einkorn thing for a while but realized that there was no reason not to go back to eating my better tasting home baked bread made with any good refined unbleached, unbromated, unenriched flour like King Arthur. I avoid whole wheat products because I think avoiding "wheat germ agglutinin" is a good idea. When I eat pasta I use "organic" which is unenriched. I have either bread or pasta at almost every meal. My personal theory is that gluten gets a bad rap and that most gut damage is probably due to fluoride and seed oils. My primary fats are virgin coconut oil and butter.

[DicCarlson]

I believe that is the longest post ever on here! I'm dubbing you the Colombo of RLS! I believe everyone with RLS wakes up and says just what did I eat, drink, do, not do, not eat? Or what supplements did I take yesterday, last night? Was the timing right? On and on!

Thank you for your tireless research - somewhere there is a key that will fit into the lock of RLS! Onward!

[Newfeet]

Dear Notnowdad,Thank you so much for your honesty, research, and persistence in getting to the bottom of this problem.

I've suffered with RLS for 50 years and during that time I've been on more diets than I care to mention. I've not tried the low oxalate diet though. I currently grow most of my vegetables on my allotment, eat mostly organic food, gluten free. I avoid seed oils and regularly eat foods to boost my gut microbiome. I do eat a number of high oxalate foods as I grow rhubarb, beet, spinach and chard.

Just recently I discovered that wearing barefoot shoes improved my RLS hugely. I have made no changes at all to my diet lately. I really can't understand why and wish there was someone who would research this. I have two sisters neither of whom suffer with RLS and I've often wondered why. They both have normal sized feet while I have very broad feet and have struggled to buy shoes to fit properly. Barefoot shoes are really wide and allow the toes to spread, they also have no heel whatsoever which has helped my posture and improved my lower back pain.

I've been prescribed ferritin in the past which has helped when I was younger, but it ceased to be effective. I have spent countless hours awake doing stretches, applying a heat wrap to my lower back and lying with my feet in the air searching the internet for help. I was unable to take medication because of side effects.

I thought you might be interested in my story.

[SurvivorD]

Wow thank you!!! What an interesting and mind blowing article. My aim is to come off all medication for RL. Articles and advice like this gives me hope!!

[LotteM]

Notnowdad, you gave worked hard and consistently. Am I right that the / your main source of fluoride is from drinking water? If so, be aware that water is not fluoridated is many countries outside the US. There is a map of (artifical and natural) water fluoridation on the English wikipedia page on the topic. I live in The Netherlands where fluoride levels in water are very low. Same in neighbouring Germany. Both countries have 'normal' levels of occurrence of RLS. These simple observations are I think enough to put a question mark to your story/theory. But I am very happy that filtering the water and the other extras work for you. These actions seem far simpler and healthier than your initial low oxalate diet. It is so wonderful when one finds a way to control the RLS through (a healthy!) diet and without medicines.