More than six years ago I found that I could turn my RLS discomforts on and off by controlling the amount of oxalate in my diet. My original breakthrough in understanding came after about 5 years of closely monitoring my diet and my daily discomfort level. Many people who conscientiously follow a low oxalate diet report about a 90% improvement in their RLS symptoms. Because there is some oxalate in virtually every plant based food it can be difficult to fine tune the diet and get to 100% relief.
Before I could consistently get close to my goal of 100% relief I had to have two more breakthroughs. Because virtually every source of information about low oxalate diets says that meats are oxalate free and not a problem, it took me years to realize gelatinous soups and stews trigger an RLS response in me. For years I had been thinking that, even though the vegetables in my soups were low oxalate, the slow cooking process was making their oxalate more bio-available, and they were triggering my reaction. Scientists have recently confirmed my conclusion by finding that eating gelatin raises urinary oxalate. Their explanation for this is that gelatin causes the liver to endogenously produce oxalic acid. Some years ago I had noticed that magnesium supplements with glycine in them triggered my RLS. Apparently it is the glycine in the gelatin that is involved in the inappropriate production of oxalic acid.
The other big breakthrough happened when I came across information on the internet that an oxalic acid solution is typically sprayed on certain vegetables and fruits post harvest because it preserves freshness and nutrients during transport and storage. Although asparagus is a low oxalate food, it seemed to be triggering my RLS. I had wondered if asparagusic acid, which is unique to asparagus, could be acting like oxalic acid. I now eat asparagus again, but only if it is sold as organic. I intend to do more research into how much of our produce is being treated this way, and I buy organic whenever possible.
Now that I have gotten almost complete relief from RLS by following a low oxalate diet, I have been reading some of the scientific studies and trying to come up with a possible explanation for what is happening in my body when I experience an episode of RLS.
Because researchers have established that low 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 those particular 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 iron 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 get me 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. There are similar liver bio-markers noted in people who take Pramipexole and those who suffer from secondary hyperoxaluria, a potentially fatal over 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 the inappropriate production of excess oxalic acid may disturb the pH of the blood. The displacement of carbonate may eventually be seen as a protective mechanism that helps to maintain a proper pH of the blood because it helps to “mop up” the excess oxalic acid.
I wish you all the best in your struggles with this devastating affliction.
Jim Hejl
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notnowdad
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Very interesting and we'll layed out thesis. I'm open to any theories. Thanks for educating us. I applaud your discipline on monitoring your food and then your bodies response. I assume that has taking years to fine tune as there can so many other factors that can determine how you feel. Kudos to you. I'm not sure I would have that in me. Keep us updated on any more research you may come across. All I know is the human body is extremely efficient in regulating blood ph. Is the evidence on the liver being stressed based on a general assumption of taking medicine or is it specific to certain medications?Thanks.
This is very interesting, thankyou for posting.I am going through severe augmentation and withdrawal from ropinirole with the help of oxycodone. I recently lowered my dose of ropinirole and 7 days later felt things were going quite well but then began to experience severe symptoms. I put this down to a stressful situation I had experienced but now I am thinking otherwise...
I had eaten a decent serving of delicious raspberries fresh from our garden. After reading your post I looked up raspberries and they are very high in oxalates!
Also the same day I had taken my iron supplements with VitC chewable tablets which I haven't so far done.
This is very interesting! I will look into this further.
Can I ask had you taken medication for your RLS before discovering a low oxalate diet?
I am wondering if the diet would be as effective after suffering augmentation?
Might I recommend that as long as you’re taking iron to take it before bed on an empty stomach. The more bioavailable the iron the better - such as ferrous bisglycinate. Remember, there is a very prominent circadian rhythm to RLS which generally starts in the evening. The multi-million dollar question is why. I can’t think of any other disease with this type of rhythm. Anyways, I take iron at night and within an hour my RLS is gone, but only for that night. Not a cure, just the best darn treatment out there. I truly believe that the symptoms of RLS kick in as Mother Nature draws down the unbound iron in our bloodstream in the evening. Everyone’s blood iron level drops in the evening, but we with RLS can’t handle it. We can’t handle a lot of things that the non-RLS world can. I also think that there are degrees to RLS, meaning my lousy dopamine transport system may not be as lousy as yours and there are probably many people out there with sub-par dopamine receptors who don’t even know it until they get pregnant or injure their spinal cord. There’s also a point of no return for everyone. By this I mean that just about anyone who suffers a traumatic spinal cord injury wherein paralysis results will suffer from RLS.
I use Gentle Iron by Solgar 25mg. One or two on an empty stomach when I feel the RLS or if it’s a good evening and I don’t feel the RLS I may remember to take it when going to bed or sometimes not at all. Too many times I then wake-up with RLS and I take the iron but it takes an hour to kick in so I try not to forget. If my stomach is full and I have RLS then I put an iron patch on my arm made by PatchMd. I use the 45mg iron patch. It enters the bloodstream slowly over a period of 8 hours so I prefer the punch of the oral one. Generic name for both of the above is Ferrous Bisglycinate. If u try it then please report back.
About four weeks ago I read on here a post about gentle iron. After a really bad session of RLS I thought it was worth a try. I also went on a link to an article about the anemic brain. I bought some and waited for my legs to start . Sure enough that night they started, just as a film was getting interesting. I took a iron tablet and about 30 minutes later watched the rest of the film. I have since taken one tablet every night and have not suffered RLS. Just to satisfy any doubt I have since knocked the iron off and RLS returned the next day. So back on the iron now. The other amazing fact is my daughter has dystonia and also tried the iron , after learning about the anemic brain theory . She is so much better and has now come off her prescription drugs. I can't thank this site enough, and thank you to all the people who take the time to share there information.
Gmc54, over the years there have been many people on here who have shut down the possibility that oral iron could have an immediate effect. So much so that they asked the Administrator to remove such posts. A few remain, such as the above post. I'm not saying it works for everyone in this fashion, especially those that have down-regulated their receptors via dopamine agonists, or who are on anti-depressants, but it's worth a try for just about anyone on here except those with hemachomatosis. Most of the naysayers of old seem to be gone or have gone silent, fortunately.
You can try contacting GillRLS to see how she is doing.
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An old article, but short clear and succinct. I truly believe, with all my puny, know it all brain, that this is the reason we tend to get symptoms of RLS mainly in the evening. Our pathetic D2 receptors just can’t handle that drop in free, unbound iron. Iron is the glue that holds the dopamine transit system together, for everyone. I’m guessing that the non-RLS world, that actually have stores of iron in their brains, can make a withdrawal at night if need be. We have no such brain iron stores. onlinelibrary.wiley.com/doi...
I had seen this mentioned on the forum before, probably by you, but was worried to try incase the iron interfered with the other medications I am taking at bedtime.
I take 20mg oxycodone along with 1mg ropinirole, I am going through the process of reducing the ropinirole.
My sleep is incredibly fractured with me waking regularly through the night. The oxycodone has helped greatly with the severe RLS/Augmentation /Withdrawal symptoms I suffer from but I think it interferes with my sleep pattern unfortunately and I don't want to make that worse because I am so tired!
Do you take any other medication along with the iron?
I do not take any other medication for RLS. The iron will do nothing for my night time RLS if I take it during the day. My iron stores are up there and my red blood count is like that of an 18 year old male. ..around 14. The only reason to take iron is to put a little in my blood when my RLS brain and pathetic D2 receptors are grinding to a halt in the evening from lack thereof. Anyways, I will probably get banned from this site for saying this, but I consider iron a great sleep aid, aside from RLS. So if I were you I would take it at night only and I would take two, not one capsule, at least until your down-regulated receptors return to their normal pathetic selves. And they will get there now that you are reducing the agonists. If you’re worried about the iron interfering then take it earlier in the evening and preferably just as you’re feeling the RLS kick in. If you’re like me the RLS will fade after about an hour. And if it doesn’t you can go right on and take the oxycodone and ropinirole without worrying about the iron interfering. No harm, no foul.
As strange as it sounds, right now you're going down the well-travelled road. Clinically speaking, doctors and the people on this forum, know what you need to take and approximately how long your increased symptoms will last. Combine that with the iron (and please try not to eat after 7pm) and you will come out on the other side, no worse for the wear. Then the hard part begins, so I think. How do we as a group pick ourselves up? How do we show the world that it is possible to increase the number and density of our D2 receptors which are causing our problems? Never say never. If porn addicts can up-regulate their dopamine receptors (and I have nothing against porn) then so can we, don't you think? Here are some of the latest, greatest ideas of how to do this. When you get to the other side let me know because then maybe you and I can work in tandem and see what if any of these might help. I love the idea of sunshine and exercise and some of those supplements sound like they are worth a go as well. Here's the article: men-elite.com/2020/07/10/do... "You are never given a dream without also being given the power to make it come true." I know we can up-regulate our dopamine receptors, I just know it. The gene that causes us to have this condition would have evolved out of existence if it caused this much disturbance to our ancient ancestors. They wouldn't have been able to survive much less thrive. Their lifestyle limited the degree of this disease, somehow, someway. Intermittent hunger, daily exercise the likes of which are only seen today in elite athletes, sunlight and eating solely between sun up and sun down I'm guessing made all the difference in the world.
Thankyou for your positive outlook and the interesting link. Currently I am trying to get out early every morning for a good walk to make the most of the morning light which I know is important and the exercise I find helps my symptoms.
I will try the iron tip but as Manerva points out it is best to take iron every other day for it to be absorbed to its highest potential, research backs this so I will stick with doing this.
I have started taking a high potency omega3 supplement every day and have doubled the amount after reading somewhere that this can help with dopamine receptors.
I don't want to take loads of supplements so I am trying to keep things simple.
I keep meaning to drink more water and keep forgetting! I believe this could really help and certainly won't harm obviously within reason.
I will try the iron trick tomorrow night because I took iron yesterday. I really hope it will work for me but I do have my doubts. It will be a wonderful surprise if it does 😊
Thankyou again for the advice and positivity. It is so easy to get snowed under in misery with this awful affliction!
Wish I could agree with Manerva but I can’t. There is no magic number for ferritin that will improve your RLS based on dozens and dozens of self reports here. Your current level sounds fine to me and I guess your doctor. Raising it to 100 or 109 or 239 will not make any difference based on stories I read here. No point in taking iron every other day to maximize absorption when your bodily stores are irrelevant and perfect right where they are. . Just ask Lysonic. He is up to 499, but if he misses his nightly dose of iron he suffers terribly as he explains here: “Hi: I take a nightly supplement of "dry positive" iron, 80 mg, which is combined with 0.35mg of Folic acid. Every couple of days I take half the dose but my sleep is definitely compromised that night so I'm reluctant to give the supplement up entirely for a night as recommended here. My iron level is 164 ug/dl, just under the 170 high level, but my ferritin level is 499 ng/ml which is above the top recommended level of 400. By continuing this dose of iron/folic acid am I in danger of toxicity?” If I were afraid of iron overload then I would just take the iron when you get break through symptoms. Like Lysonic, the iron should enable you to sleep without symptoms of RLS.
I tried the iron trick you suggested 2 x 20mg iron bisglycinate at night but sadly it did nothing for me.
I think because I am going through augmentation/withdrawal my symptoms are too severe and frankly this past week it would take a sledgehammer to knock me out!
I will try again in the future when I am over this ordeal...
In the meantime I am so pleased you have found something that works for you and importantly has helped others too. 😊
Well that’s disappointing. Not sure I would necessarily stop, but I hope there’s other drugs you can take to ease the temporary suffering. Hopefully you can sneak a cat nap in!!!
Iron therapy is a recommended evidence based treatment for RLS.
I would never naysay it.
Brain Iron Deficiency (BID) is a well accepted cause of RLS. (For the sake of accuracy I don't believe there is any such thing as "brain anaemia".)
The recommended way of monitoring iron therapy for RLS is to have blood tests for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin if necessary.
A low haemoglobin is one way of detecting iron deficiency anaemia (IDA) a blood condition.
A low serum iron and TSAT (<16%) can also indicate IDA.
A TSAT of 45% or more may indicate haemochromatosis and certainly if TSAT is that high, then NO iron should be taken.
Since blood ferritin levels are associated with brain ferritin levels and other findings, the aim of iron therapy is to raise blood ferritin to at least 100ng/mL (UK units) and ideally to 200 or more.
International guidelines state that the simple rule is that if ferritin is below 75, then an oral iron supplement can help. If it's over 75 but under 100, then an IV infusion may be needed.
With oral iron supplements, it can take 3 months for the therapy to have an effect. Even with IV infusions it can take that long.
There are therefore very good reasons for taking iron.
It's not really important what effect iron will have on any other medication you take, it's the other way round. I.e. various substances prevent iron absorption, particularly magnesium and antacids. Never take these at the same time as iron.
Some people do say that taking a supplement works like a painkiller, for example. I.e. it works the same day and missing a dose means symptoms come back.
I'm not aware that there is any ban on saying this.
However, although a few people claim it works "instantly", there seems to be no physical explanation for this. So it might be for some people, but not for most people and there's no predicting what any individual will experience.
As regards using oral iron as a sleeping aid, then again, simply if it works for you, do it, but there is no explanation for this.
I usually suggest that people only take iron once every two days NOT daily. It has been demonstrated that when iron is taken, a hormone hepcidin prevents any more being absorbed that day, or even the next day It has been shown that taking it bi-daily can increase absorption up to 50% if I recall correctly.
This seems to contradict your experience.
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Have you tried it the way I describe?
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I have written only what the accepted evidence says.
Oral iron is best absorbed if you take it -
In the evening
30 mins before or two hours after eating (empty stomach)
Taking vitamin C or folic acid or orange juice at the same time
Taking one OR two doses
Taking it once every two days
Taking it every two days increases the amount that's absorbed thus increasing ferritin levels. The evidence is that an increase on ferritin to 100ng/mL can benefit 50% of people.
It's well accepted that the best way to increase ferritin is by IV infusion. This bypasses the absorption limitations of oral iron.
The evidence is that IV iron infusions can benefit 60% of sufferers, partially benefit another 20%, but unfortunately 20% still get no benefit.
If's been identified that even IV infusions can take up to 3 months to have effect.
In the light of the evidence gained from various studies there seems to be no basis for any mechanism by which iron can affect RLS symptoms within one hour.
I'm not doubting what you say. I'm only saying that there's no explanation for it.
Bearing in mind that evidence suggests that oral iron isn't of much value if ferritin is greater than 75ng/mL then I would suggest people take iron every other day, or even daily if that's their choice.
If it somehow has effect within an hour then that is an amazing bonus.
Whatever the reason, it's not physical.
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Come back to me after you have tried it, if you are of the mind. Then we can talk.
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Oh and tell this to Lysonic who got his ferritin up to 499 with oral iron but suffers terribly if he even cuts his nightly dose in half.
This breaks my heart. The only thing that helped her was the nightly iron and the doctor pulled it away from her. Any doctor (or any sufferer), who thinks that nightly bioavailable iron does not obliterate RLS symptoms in MANY patients need to have their head examined. No pun intended. healthunlocked.com/rlsuk/po....
Manerva, I concur with all of your evidence based findings. Last year my doctor had me on 150 mg of elemental iron and after 3 months my ferritin level was the same. I had RLS every single night.. all night long during the time I took nightly oral iron pills. I thought I would die of stress and lack of sleep.
Thankyou Manerva for the helpful advice.I currently take Solgar gentle iron every other day and will continue to do so as studies back this up I believe. I will however try Eitherors iron tip in the hope that it works for me which would be truly amazing.
I will report back with the results.
My ferritin level was 87 I think when tested a couple of months ago but I had been taking gentle iron before having it measured so I will continue to do so.
I would most likely benefit from an iron infusion but I have met with such ignorance and even hostility at times from GPs which I have found very hard to deal with that I just can't face even bringing the subject up at the moment!
This forum has been a life line, such a wonderful mix of evidence and ideas all thrown together. You yourself have been an enormous help to me and I am so grateful 🤗
Nettles, press your doctor for the iron infusion; it was a life saver for me. I took research from the Mayo Clinic and John Hopkins Univ. plus my own hand drawn graphs showing my lab results from the past 5 yrs until finally my doctor made a call to a sleep lab doctor who in turn asked my doctor what my ferritin and iron panel results were. As soon as my doctor told the sleep lab doctor the results, the sleep doctor said "she needs an iron infusion". Finally!
I can only reiterate that apart from a few people experiencing immediate relief for their RLS from taking iron, if that's what you're referring to, there's no direct evidence that it can.
Sorry if you meant something else.
Theoretically, as far as I can see, the way in which iron helps with RLS offers no explanation how iron could ever have an immediate effect on RLS.
Do please continue taking the Solgar regularly, it can be effective for RLS, but it has to be taken regularly for months.
This is what the literature suggests and this what I've observed to be other people's experience.
You have my sympathy as regards augmentation/withdrawal. I understand your difficulty with your GP but an opiod or a sleeping aid might help.
I can't advise, but some people find over the counter paracetamol and codeine helpful. There are also herbal kinds of sleeping aid, which at least may do not harm.
Beware of products containing sedating antihistamines.
Thanks Manerva for the helpful advice.I didn't really expect the taking iron last thing at night trick to work but thought it was worth a try.
I am currently taking 25mg oxycodone to help with the augmentation and withdrawal but still it is pretty dreadful with intense creeping crawling burrowing sensations in my lower back, abdomen and right leg.
It feels like my insides are trying to crawl out!
I take all of my oxycodone at night which gives me a 2 or 3hrs sleep so I count myself fortunate compared to some!
I will continue with the iron every other day.
I look forward to looking back on all of this at some time soon.
Thanks for your post- From my experience with 7 sleep disorders one being severe RLS for 35 years and a circadian rhythm disorder etc I have found that RLS seemingly is triggered by a tired brain and body combination along with being motionless. It’s like a brain ‘seizure of sorts’ that triggers the body to “act out” in repetitive heightened reactions of crazy movements.... if they are not satisfied and allowed the freedom to move, jump, tense-up, stretch the brain seems to go all out with the ‘signals’. Trying to beat this complex system by outsmarting it well it’s great to do whatever you can to get the rest and sleep you need. Airplane ✈️ and car travel even sitting down on the couch will cause all systems to turn on full steam ahead...... so my observation is the tired brain and the cramped body result in extra reasons for RLS to rear it’s not so pretty head! My solutions over 35 years have sometimes been desperate and crazy and I thank the Lord I finally have help that works great in USA there are a limited number of doctors who oversee and treat with low dose pain killers or methodone. I started with 2.5mg of the methadone and am up to 5mg which is still very low. My new doxycycline protocol has triggered a smooth sailing system into heightened activity. Maybe there’s something here that’s useful to someone somewhere.
Methadone is a great jumping off point. Now try the ferrous bisglycinate as described. Try to get most of your calories between sun-up and sundown- that will reset your guts circadian rhythm to where it should be. Try to go to bed earlier now that you have methadone. Last but not least try severe calorie restriction twice a week with your doctors permission. All of the above have been shown to help RLS and by following Nature’s built in light/dark rhythm you will have more energy and feel better in general.
Thank you for these suggestions... I’m presently on a keto diet for another condition and have been considering a fasting day or two to help kick in my sluggish metabolism due to hypothyroid and hashimotos issues. I am unfamiliar with the theory of why or how it can help RLS- 🤔 I’m getting my Thorne Ferrasorb iron out right now and give it another try. Also get on top of my B-12 injections.....it takes a lot more planning to keep “Humpty Dumpt” together when you turn 65!! 👍😆
Hi. I'm replying to your question about augmentation. After taking opiods and then pramipexole for almost 10 years I experienced severe augmentation. I weaned myself off all medications over a two year period. It was very, very hard and my RLS did not improve. I had been following a very "healthy" mostly plant based diet for years. I read notnowdad's experience on another RLS forum and immediately stopped eating fruits and vegetables for a day. It was a miracle, I didn't experience RLS at all the next night. Since then I have figured out what foods will definitely cause me to have RLS, some foods that don't seem to bother me at all and some that seem to affect my RLS if I eat too much of it. I have been RLS free for a year, except for the times I eat too many oxalates. Having this information about oxalates was and is the miracle I searched for as I am now in control of my RLS - RLS no longer controls me. I hope this helps.
Thankyou so much Sleep2022 for this heartening information. I have had an appalling past year or so and still my difficulties continue. I will look again at the low oxalate diet. It is good to hear a success story from time to time, it gives us hope. Thankyou.
Hello again Sleep2022,Can you give me an idea of what you would eat on a normal day please. I appreciate we are all different and what one person does or doesn't react to will vary but it would be really helpful to know. I appreciate your help.
Hi Nettles68. It's really hard to find good information about oxalates. I started by looking at low oxalate diets for those who suffer from kidney stones. It's more about what I don't eat. Any fruit or vegetable I eat, I peel first, including tomatoes. I eat organic. I never eat potatoes which were a staple of my diet as I'm gluten free. I find I can eat (in moderation), cucumbers, tomatoes, corn, carrots, rice, eggs, most meats cheeses and dairy, watermelon, cantaloupe and pineapple. I eat some goitrogens (broccoli, cabbage, etc.) but I have Hashimoto's thyroiditis and goitrogens can cause other problems for me. I eat pecans, walnuts, sunflower seeds and pumpkin seeds. I only use sunflower oil for cooking and maple syrup as a sweetener although refined white sugar is also acceptable. I used to use honey almost exclusively as a sweetener - it is very high oxalate! I eat pasta made from rice, corn tortillas and I eat oatmeal. I avoid processed foods as much as possible. I don't drink alcohol and have heard to especially avoid wine. I drink one cup of coffee a day. Tea can be very high in oxalates. I drink water with lemon or a drink called Spindrift but only the lemon flavor. Asparagus and bananas trigger RLS in me and I don't really know why. Keeping a food diary really helped me. I also take a day or two off a week from eating any known oxalates sort of as a reset but I don't really know if it's necessary. I hope this helps. I'm happy to share my experience.
Thankyou so much for the detailed reply I really do appreciate this! 🤗It might be worth you writing a new post so that others can see the success you have had with diet alone.
I hope you continue to enjoy long lasting control of your RLS
Thanks for sharing this notnowdad,To give me a practical sense of a low oxolate diet can you tell me what you usually eat on a daily basis?
Thank you very much, very interesting. There is a lot the scientists haven’t yet worked out & lived experience & new theories, if folk will only listen & not be dismissive is what is going to solve this,, as has occurred in other conditions over the years.Could I ask what you find is possible to eat & how this works on a day to day basis &
if there are any other problems that occur as a result?
Interesting, thank you -. A quick internet search on the subjects you mention confirms the possible use of oxalic acid solution to keep food fresh and also the concept of bioavailability of iron from food being limited by the presence of oxalic acid (one simple solution is cook the veg which reduces oxalic acid along with some other nutrients). I struggle to imagine a diet without vegetables and indeed they supply many of the things we need including a lot of the vitamins and minerals so for me these findings suggest ways to reduce rather than remove oxalates which hopefully has some benefit. Having read through many diet related articles I find it a contradictory minefield of what you can and can't eat, and of top of that certain combinations which seem to be bad e.g. don't eat grains with vegetables because substance A inhibits substance B etc. so the big take outs for me are try to go organic to avoid the food industry's "little additions", go for fresh (we grow some of our own) and eat a relatively balanced and varied diet.
I go back to the example of stomach & duodenal ulcers again as I lived through it & it was fascinating & the Australian dr who spotted it was rubbished over & over till he was so convinced & so frustrated that he actually drank a broth of the bacteria he had spotted, had an endoscopy before & after & showed he had caused himself an ulcer.Ever since I’ve realised that theories come before facts, how open minds are necessary while at the same time not going down every blind alley & insisting they are true.
Over my career I changed from saying to people ‘this IS’ to ‘this is what we believe just now’
The ulcer people had got as far as too much acid being involved in ulcers but not how. The bacteria were the missing link due to their effect on acid production.
It could well be that oxalate is the link to brain iron - or it might not be. But theories are the way to go and are what scientists use to test out, well before evidence exists.
Please may we have as many tbeorists, thinkers and observers involved in this as possible & hopefully someone will solve it & relieve our suffering & give us peace
Please also see my reply to Manerva’s reply. And I thank you again for your input & ideas
I’m probably not very good at getting the right part of the thread. Some of it seemed relevant to some of what you wrote. All part of the initial thread today and especially how we need theories before evidence and links can be produced.
I would like to add some new information I have learned recently about lactoferrin - a member of the family of iron-binding proteins. Lactoferrin is contained in large amounts in human and bovine colostrum (first milk). It is also available as a supplement which I have started to take recently (just a few days ago).
Basically Lactoferrin binds to iron and keeps it from intestinal invaders that use iron for reproduction and it can readily transport iron to various processes through out the body. It can indeed transport across the blood/brain barrier. So, perhaps this is a way to assuage the brain iron deficiency - a leading cause of RLS. I can not find ANY studies about it's use for RLS. But it sure seems reasonable to me.
Well, I try to keep my dies close to both the AIP diet and a low oxalate diet. Ordinary lettuce is oxalate free I believe, and I've eaten it so often, I'm beginning to find it difficult to face the stuff. You mention vitamin C. As I understand it, the body processes vitamin C to oxalate – I've cut my vitamin C intake down to 50-150 mg a day. (Ginger and zinc is your best natural defence against virus infection – mega vitamin C will get you virtually nowhere*).
Unfortunately, I cannot confirm any improvement in my RLS.
I do however think we need to get to the bottom of what things and what stresses, and possibly the interplay between them, are what sets off which autoimmune conditions. I think I've previously associated oxalate with stones and joint problems; I shall have to keep a more open mind on it in future.
This is really interesting! Thank you for sharing your research and experience!
My symptoms are well controlled on a low dose of gabapentin and broad spectrum THC but I would love to get off both of them.
Like Niepowiem, Covenant1962, and Alison7, I too am very curious about your specific diet. What exactly are you eating and avoiding? And like Niepowiem, I would be willing to attempt it for a week or even longer, depending on how challenging it is.
If you wouldn’t mind letting me test your theory, would you please provide a list of what you eat in a day, or week? RLS is not my only problem, so if it doesn’t work for me, it could be because there are other factors at play. But I’d sure like to give it a try. I’m not on any required medications or vitamins so there wouldn’t be any problems stopping everything I currently ingest, food or otherwise.
Thank so much for your post! I am convinced that diet triggers my episodes far more than anything else, and I am looking forward to researching and playing with my oxalate levels to see what happens.
Thank you all for the warm, open minded response. I have recently been experimenting with a very limited diet in order to get to a base line from which I can better understand how my body responds to food. I offer it as a place to start your inquiry.
Breakfast: Coffee, 2 eggs scrambled in unrefined coconut oil, about 2 oz. of smoked sausage (100% grass fed, organic beef), French or Danish Brie on a slice of toast (home baked bread made with unbromated, unbleached, unenriched, preservative free white flour), a whole orange peeled taking care to remove most of the pith.
Lunch: Either 12 medium boiled wild shrimp (preservative free) doused with hot pepper sauce made with cayenne; or, a generous portion of wild salmon or cod sautéed in butter or olive oil and finished with lemon juice. A large salad made with lettuce, cucumber, onion, tomato, carrot (shredded with a vegetable peeler), feta cheese (preferably Bulgarian sheep’s milk), white balsamic vinegar and first cold pressed extra virgin olive oil. One or two pieces of toast. When organic asparagus is available, I boil it and make a salad with tomatoes, cucumber and shallots.
Supper: 250 ml of dry wine. 88 grams of unenriched Italian spaghetti, well boiled. A high quality, vegetable based tomato sauce in a glass jar from the grocery (containing extra virgin olive oil or fat free). I enrich the sauce with sautéed onion, garlic, peas and one or more of zucchini, Portobello mushroom, roasted sweet bell pepper. 92 grams of fresh mozzarella cheese. (I roast a sweet pepper every third day when I bake bread.)
Dessert: Cantaloupe, organic blueberries, organic green grapes.
I recommend you avoid goitrogenic vegetables and fruits for at least 2 to 4 weeks. This includes soy, the cruciferous vegetables and fruits of the Rosaceae family. Cherries are especially problematic for me. The Kresser Institute website seems to have the best information on goitrogenic foods. Avoiding goitrogens seems to have enabled me to enjoy large quantities of fruits and refined carbs without having the wide swings in blood sugar that I used to experience.
Mozzarella cheese (either fresh or dry) is like a sleeping drug when consumed with a meal of refined carbs and no other protein. I suffer from BPH. I used to get up 5 or 6 times a night and constantly have trouble getting back to sleep. I now get up 2 or 3 times a night and almost never have trouble getting back to deep, dream rich sleep.
Most importantly avoid industrialized seed oils. Dr. Cate Shanahan refers to them on her website as “the hateful eight”. Since I started avoiding these oils completely my very severe allergies vanished and my weight dropped 24 pounds to what it had been in college 50 years ago. I haven’t had an antihistamine in two years. This allergy cure seems also to require avoiding refined oil of any kind including olive, avocado and coconut. Using unrefined coconut oil seems to me to have been part of the unexpected weight loss which I can’t explain.
Seafood, especially shrimp, seems to be very beneficial for my weak thyroid. I recently had a large steak for lunch and it seemed to trigger RLS the following day. A ham sandwich on another day seemed to give a similar but weaker response. I’m about to explore whether ground meats are less problematic. I saw a scientific study which said their proteins are better absorbed. And I have been eating beef sausage at breakfast every day for many months.
I use Dr. Carolyn Dean’s ReMag and ReMyte supplements. And I have recently added a potassium citrate pill once a day.
I offer all of these suggestions not as a prescription but as a place you could begin your inquiry into what might work for you. I can only share what has worked for me. I will try to pull together the references for the scientific studies when I have a little more time.
Hi notnowdad. Your diet is not a particularly healthy one, and you get a lot of of break through RLS? You eat a lot of wheat products/gluten, smoked meat, cheese. The jury was out for a long time, but now it seems that gluten truly increases intestinal permeability albeit temporarily just like aspirin. That in turn will allow more oxalates in. Casein may do the same. Both gluten and casein are able to cross the blood brain barrier though I have no idea what that means in terms of RLS.
Could the improvement in your RLS be due to calorie restriction? Even in thin people with RLS, calorie restriction (allegedly) will help. Or maybe the low oxalates diet is mixing up your gut micro biome in a beneficial way for RLS? Whenever I get a stomach bug I get the rare daytime RLS - bad enough where I slap an iron patch on. Of course if I take certain drugs during the day ie Benedryl, I may get RLS during the day as well.
Like I’ve said many times before, we with RLS live on the edge of a cliff everyday of our lives and that’s because we have a genetically bad dopamine transport system and little to no brain iron reserves. RLS is a beast that in most people sleeps by day and rears its ugly head at night. You never want to poke the beast with things like melatonin, Tagamet, benedryl and possibly oxalates? The first three substances compete with the release of dopamine, not sure what oxalates do?
I think I know why the stomach flu affects RLS. Whenever the body senses an invader it releases hepcidin which shuts down the movement of iron in our body and sequesters it away. The vast majority of the world can have the worst bacterial infection imaginable and never feel so much as a twinge of RLS. We on the other hand are so reliant on that unbound iron in our blood that when any of it gets sequestered away (like what happens every night) we get hair raising RLS. There’s something about the stomach flu that is a double whammy-so I think. Maybe because it disrupts our gut micro biome. Then it must seem like a world war to our natural defenses and an epic amount of hepcidin is released. Even without the stomach flu, a rowdy gut micro biome may be making some people’s RLS worse than it has to be? I don’t even know where to begin when it comes to trying to establish a “healthy” micro biome. Well good luck and keep up the research and human trials- on your own body 😅
Thanks for so thoroughly describing your meals for a day! Your daily intake clarified discrepancies I was seeing online so the itemized list was helpful. Evidently most of what I eat is high oxalate. Yikes. I’m looking forward to giving the low oxalate diet a try but because it is drastically different from our norm, I’ll wait until my partner goes to the UK in October (he’s the cook in the family), so as not to be tempted to veer off track. Thanks again!
I just think that lived experience can spark thought processes and lead to theories that might in the end get somewhere & spark the interest of the researchers.It will probably ‘take a village ‘ to borrow an expression from child rearing, to solve all this and many other conditions.
I love the theories and observations of others, which might spark further thoughts from other people, and especially researchers.
Thinking ‘out of the box’ is a great thing I think & this forum strikes me as a good place to express ideas - along with it’s other aims of course
This is really great practical information and thanks for posting it.
I apologise for the earlier response I wrote which might have been misintepreted.
I have suggested a low oxalate diet to members before, without really knowing why.
I don't really like making such suggestions without having some literary support for it, so any references or links you can provide would be much appreciated. This would make me feel more comfortable in suggesting it in future.
It's just my personal preference.
No problem if you can't do that, it's still interesting and to use a very weary pun, provided me with food for thought.
Thank you so much. I have the highest regard for the contribution that you make to the people on this website on a daily basis.
It has been hard to share the good news when I don't really know why it works, or if it works for other people. Recently the confirmation from other people has started to snowball a bit and it has been stimulating me to try harder to get the word out. I haven't had any luck with the medical community so I keep taking the grassroots approach.
It is troubling to read the new posts everyday from people who are suffering so much when I've gotten virtually complete relief without medicines. I keep trying to understand the mechanics of it so I can share it more effectively. Every time I decode some aspect of it, the new information seems to confirm more strongly that the approach is valid. And besides, I thought my new theory of what we are dealing with was potentially significant . . . so I ought to pass it on before I pass on.
Your therapy is absolutely fascinating. I was on a strict low oxalate diet about 15 years ago when I was blessed with kidney stones. At that time I was diagnosed with hyperoxaluria. I do not recall if my RLS improved During the time I was strictly following the low oxalate diet. This is definitely worth revisiting. Currently, I am trying an anti inflammatory diet and it is helping. My RLS doesn’t kick in until after 5 pm which is a great improvement from 1 pm. In addition, on most nights, my symptoms are not as severe. Thank you for sharing your research!
I really don't have much to add to the subject but I have respect for everyones passion they bring. It's like GOT is back on and I'm waiting to see who will end up on the Iron Throne. Keep educating me everybody.
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