Before you read the following please take a moment and imagine how frustrating it is for someone to have figured out a non-medical treatment for RLS and then had very little luck getting anybody to listen to him. Every day this website carries stories of needless suffering and it breaks my heart. For seven years I have been trying to help people through the rls.org discussion board for non-prescription and dietary solutions and, by my best estimate, I have helped only a few hundred or, perhaps, a thousand or so people. To the best of my knowledge nobody in the medical profession has picked up on my insights.
People with RLS have lost their ability to tolerate normal amounts of oxalate in their diets. A few people have taken my suggestion and learned that a conventional “low oxalate” diet will give most people about 90% relief from RLS in a very short time frame. There is plenty of information on the internet about low oxalate diets. Most of these websites are ignorant of two key distinctions which I have been able distinguish because of my predictable physical response to oxalate in which I manifest RLS 24 hours after eating an offending food.
First, some fruits and vegetables in the grocery store have been sprayed with an oxalic acid solution post harvest “in order to preserve appearance and nutrients”. This practice is common in Europe as well as the US and is, to the best of my knowledge, almost a complete secret. It took me years to realize contaminated asparagus and artichokes were the cause of that “last little bit” of RLS that I couldn’t get rid of. Fortunately I have a local source of organic asparagus and artichokes. I only eat organic fruits so I haven’t researched enough to be able to give you guidance in that area.
Second, many people, including me, who suffer from RLS have a propensity to inappropriately produce oxalic acid in our livers when we ingest large amounts of the amino acid glycine. This means that, in order to be RLS free, I have to avoid eating gelatin and gelatinous soups and stews. Recent research has confirmed that eating gelatin raises urinary oxalate. I take this as confirmation of my insight which occurred about five years ago. Most websites advise that meats are completely safe. I believe I may have had a bad reaction to an unusually large steak and I am currently keeping my red meat portions small.
While I haven’t been hugely successful in persuading people to try my solution, I have had enough positive responses to confirm that this approach can help many people. There is no risk involved in giving it a try, and I sincerely believe it would be worth your time.
My continuing inquiry has led me to additional insights into how things in our food supply affect my well being. Most surprisingly, I recently stumbled onto the fact that, if I simultaneously minimize my exposure to two common substances, I change from being a person with very severe allergies to being a person without allergies. Because I have a severe allergy to dust mites I can, since I have removed the protective covers from my mattress and pillows, know from day to day if I am maintaining my “allergy free” state. This means that I am uniquely qualified to discover the negative effects of some toxins in our food supply in the same way I could use my RLS to discover hidden sources of oxalate.
So far I haven’t been able to get anybody with allergies to give my approach a try, so I haven’t been able to confirm that it will help others. However, I have a strong hunch that it may be the reason why my body lost its ability to tolerate a normal amount of oxalate in my diet. Therefore, I humbly offer it for your consideration.
If I aggressively minimize my exposure to fluoride while also avoiding the common refined, bleached and deodorized (RBD) cooking oils made from seeds (corn, soy, canola, etc.) I become a person without allergies. In order to accomplish this I not only have to avoid fluoridated water and the common fluoride based pesticides in our food supply, but I also have to avoid most “non-stick” cookware which in made with toxic fluorocarbons. In order to completely avoid those fluorocarbons I am currently avoiding any food that may have been in a can because of the lining materials.
Many scientific studies are currently proving up the many damaging effects of fluoride. Not only does it impair thyroid and pineal gland function and interfere with dopamine receptors, but it impairs iron absorption by both damaging the intestinal lining and increasing hepcidin expression. My experience suggests that its toxic effects may be increased by the exposure to RBD cooking oils. I about to experiment with unrefined, expeller pressed seed oils to try to determine whether it is the hexane residues in the RBD oils that impair my immune system. I will continue to sleep with the dust mites in the interest of science.
Three final thoughts:
Scientists have learned that oxalate can displace carbonate as the binding agent which attaches iron to the transferrin in our blood. When this happens the iron is “locked up” and can’t be distributed around the body. I believe this is what makes RLS discomforts manifest the next day. Because our bodies have extra “iron binding capacity” most of us can, if we avoid oxalates on that second day, return to normal iron distribution by the following day.
The RLS augmentation that sometimes accompanies the use of Pramipexole and similar drugs is probably due to an increase in endogenous production of oxalic acid in the liver.
Bromide, which is used to bromate much of the flour in our food supply, may be as toxic as fluoride. I bake my own bread with unbleached, unenriched, unbromated flour.
In recent months I have become completely RLS free. I wish you all the best.
Written by
notnowdad
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Delighted you've found a solution to your RLS. I'll keep my reply brief. Diet doesn't work for everyone. I advise everyone to give it a go. I personally followed very restrictive diets for over 2 years.Others swear by the low FodMaps diet which you will know contains foods banned on your diet. Eryl swears by a sugar free, low carb diet.
We are all different and what works for you may not work for others.
You missed my point. I am explaining why this diet is different. You seem to be saying the because it is "a diet" and other diets don't work, this won't work.
I'm not. I'm saying there have been people on here saying their RLS has disappeared after following a strict low FODMAPS diet which contains oxalates. I followed a low oxalate diet and it made no difference to my RLS.
So it's fantastic that you've found what helps you, I'm just saying it won't help everyone with RLS.
I apologize for the tone of my response. I didn't understand that you had actually tried a low oxalate diet.
I have a strong belief that oxalic acid is the root of the problem. I suspect that, as I have suggested about Pramipexole causing the inappropriate production of oxalic acid in the liver, other meds and substances may impair liver function and contribute to the problem. For now I can only speculate, and hope that the research scientists will pick up on this promising connection.
In the mean time I hope to hear from people who have had success the way I have. They sometimes have interesting stories. One person who found relief this way reported she also had hyperoxaluria, which is overproduction of oxalic acid and almost always fatal.
Let me ask, when the low oxalate diet didn't work for you, were you aware of the "higher level" distinctions that I had to work out? Eating meat soups? Eating non-organic fruits and vegetables that were probably sprayed with oxalic acid? Taking collagen supplements or minerals chelated with glycine, like magnesium glycinate?
I did eat organic fruit & veg & grass fed organic meat. I wasn't taking supplements at the time.I followed strict organic paleo for 12 months. No difference.
However, I now have zero RLS and sleep 8/9 hours every night.
My theory is that RLS has different causes. In your case it may be allergies to certain foods & thankfully you've found a solution.
For others, an iron infusion completely resolves their RLS (whereas it did nothing for mine).
Others take a magnesium pill or rub magnesium cream on their legs and they resolve their RLS.
In my case, spinal scarring disrupts dopamine travelling up the spinal cord.
Diet & supplements therefore haven't made a difference.
I hope someone else finds the low oxalate diet helps their RLS.
"You might be right rabbit, you might be right" That's a line from Bugs Bunny. But first a few things that might be inaccurate with your post/methodology. I too suffer dust mite allergies and my beloved, retired allergist wanted me to use those bedding covers. Later on I read that even the tightest weave that man can make looks like ship's rigging to a dust mite and we're actually allergic to their poop which is even more microscopic. Next, in terms of fluoride, I believe tea is also high in it. Among people in rural parts of India fluroidosis is common. I recall reading there are actually veins of fluoride that criss-cross the earth and can leech into water and crops (?) at dangerous levels. I read that several years ago and would need to revisit. Lastly, we with RLS don't seem to do well with large anything in the evening in terms of food. So the RLS you experienced after eating that large steak may have been from a spike in serotonin which then competed with your dwindling dopamine due to dwindling night time iron. A large and delicious evening meal means a couple hours of RLS starting about 30 minutes after the meal, for me. I could be wrong, but I bet if I was forced to eat a large quantity of liver and okra in the evening it would not provoke RLS symptoms. And anything, even in a small quantity, eaten after 10pm will trigger pretty bad RLS. It's all sort of amazing because a large delicious lunch will not trigger RLS - at least not for me.
I just read that oxalate levels are diurnal and if I read correctly are higher at night. And as you know, oxalates were put on this earth to combine with either calcium or iron in our bodies (and even in the atmosphere?) and maybe one more mineral? So if that bastard nutrient (pardon my french) is sequestering away some of my already low levels of night time serum iron I'm cutting it from the program, certainly after say 4pm. Here's an article I think you will like. urologyofva.net/articles/ca...
With all that said, the problem with concluding that a low oxalate diet helped resolve your RLS is that like any good restrictive diet we tend to eat way less in general because we eliminate entire delicious food groups. Severe calorie restriction has been proven to up-regulate our dopamine receptors as well as fasting. And maybe, the diet causes people to do less night time snacking because if you can't have a bunch of chocolate chip cookies with milk then why bother. No one wants a piece of boneless, skinless chicken 10pm at night. I can practically see you eating something at 9 or 10pm, getting RLS, and thinking that what you just ate must contain oxalic acid whereas it was just the act of eating at that hour that did it.
Well NotNowDad, I hate to propose this, but since you sound like a scientist I would love it if one week you would eat whatever you wanted, including high oxalic foods, but stop eating after 6pm and see if your RLS comes roaring back. That would somewhat discount the possibility that it is calorie restriction rather than reduced oxalate intake that has improved your RLS.
EDIT: I hope your homemade bread doesn't include whole wheat. Wheat bran and wheat germ are considered high oxalate foods.
Ok, I've now read more about oxalates than I think I wanted to in an entire life time and my conclusion is that a low oxalate diet for RLS is dubious at best. The biggest factor in my decision is because our own bodies produce 50% of that oxalate supposedly as a result/residual of consumption of salt, animal protein and any excess vitamin C.
If we cut out, or down, on salt, animal protein and vitamin c to try to prevent our own production of oxalates, as well as cutting out all of those whole grains, nuts, seeds, fruits and vegetables that are high in oxalates, we are left with romaine lettuce, ice chips and a toothpick. Trying to follow the diet could literally drive you insane and then that might be the best part because once insanity sets in we might be less likely to notice RLS. And supposedly taking some calcium at the same time as a high oxalate food will bind up the oxalates before they get absorbed. Problem solved? Take one of those children's chewable calcium gummies with each high oxalate meal instead of cutting out 100s of food types?
However, avoiding fluoride where ever you can, as well as bromide, is probably not a bad idea. If you want to more quickly rid your body of fluoride and bromide I have read (and tried) Lugol's iodine. Iodine will displace fluoride and vice versa.
Not now Dad, I share your frustration when I read of how desperate some of our members are. Having taken the advice on this forum to reduce oxalates in my husbands diet his RLS has improved dramatically and he has been able to reduce his Temgesic to only one tablet at night. (He suffered intractable RLS after pramipexole augmentation). Unfortunately he has a condition called hemochromatosis, a hereditary iron storage impairment so cannot tolerate the other very helpful advice from this forum - taking iron bisglycinate before bed. The one time he tried it, it stopped the RLS almost immediately but he was laid out for 24 hours with total fatigue from the iron storage. Please anybody with unexplained higher than normal Ferritin levels - don't think it is not a problem, it can be, and should be investigated for this heredity condition or other inflammatory diseases.
Hi there, so pleased low oxalate works for you. Also I can imagine your frustration. There are so many examples of researchers not being believed at 1st & then eventually their findings becoming mainstream.I think I looked at your low oxalate info before ( or someone else’s ) & twigged that I may not have the self discipline! I’m one of those who suffer hell each night but still somehow want an easy answer & for someone else to fix me - how ridiculous is that?! My excuse is I’m tired which erodes my self discipline - possibly not alone here?!!
So, thank you for the reminder & I realise I’m not going to know unless I try!
There are others suggesting other dietary solutions & it all gets a bit daunting when all I want is some sleep!! Thank you again
So, further to my recent reply I’ ve now looked again at low oxalate diet info - and am finding much of it is contradictory.Most of the info is for folk who have a tendency to oxalate kidney stones.
Would you have the time to let us know briefly what you avoid & what you eat in your own low oxalate diet?
I currently eat a very limited diet which I enjoy immensely.
Breakfast: Coffee, 2 eggs fried in unrefined coconut oil, about 2 oz. of uncured, 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 . A large salad made with lettuce, cucumber, onion, tomato, carrot (shredded with a vegetable peeler), feta cheese, apple cider 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. Often have a small serving of Haagen-Dazs ice cream. (I generally don’t eat asparagus at night because it is a potent diuretic.) When in a hurry, I have a grilled Gouda cheese sandwich, pickles, carrot slaw (shredded with a vegetable peeler).
Supper: 76 ml of Irish whiskey. Homemade pizza or unenriched Italian spaghetti, well boiled. Have a vegetable side dish and/or enrich the main dish with any of the following: fresh tomatoes, onion, garlic, peas, zucchini or yellow squash, Portobello mushroom, roasted sweet bell pepper, carrots, fresh organic artichoke with butter. Fresh mozzarella cheese. (I roast a sweet pepper when I bake bread.) Mozzarella cheese (either fresh or dry) is like a sleeping drug when consumed with a meal of refined carbs and no other protein. When I have beer it is Stella Artois. Most wine is high in fluoride.
Evening dessert: Cantaloupe, organic blueberries.
I am currently avoiding goitrogenic vegetables and fruits. I hope avoiding fluoride will eventually allow my thyroid to recover. In traditional medicine fluoride was standard treatment to slow down a hyperactive thyroid. Because we are exposed to so much fluoride in our water supplies, pesticide residues and cookware it is not surprising that fluoride supplementation is the most widely prescribed medicine for women of child bearing age in this country. 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. This includes soy, the cruciferous vegetables and fruits of the Rosaceae family.
Thank you. It’s very kind of you to explain all this.I don’t mind a limited diet at all either as long as I am getting sufficient nutrients & vitamins which you sound to be.
I don’t think I could manage your diet though due to likes & dislikes though with any luck I could find some suitable alternatives.
Because I find the online advice a bit conflicting I would be really really grateful if you could find the time to itemise for me the basic principles about what foods are ok, what might be ok in small quantities & what are completely no’s, maybe listed in food categories.
It seems eggs are fine & I can easily make boiled eggs.
Eg is on or brie cheese ok ( would do me fine ) or are there other cheeses as well.
Which fruit & which veg are ok? I can manage oranges without peel or pith ok.
Anything else if skin removed better than whole.
I read something about cooked carrots being ok but raw not?
Any other fish apart from your prawns ok? What about tinned tuna - says she hopefully!
Any cold meats ok.
I’m not too bothered about meat apart from its iron & protein content.
What about milk?
I can see it being hard for me to bake your type of bread. How vital is that & why?
Are eg bought crackers & oatcakes or home cooked pancakes made with normal flour a complete no no.
Some of your diet I assume relates to low fluoride rather than low oxalate. Could you let me know which is which?
Do you think any reduction in oxalate is helpful or does it have to be a marked reduction.
I also read our bodies manufacture our own oxalate.
You mentioned you eat ice cream. I think I find ice cream is a trigger for me, maybe the sugar or possibly vanilla which I have suspected for a while.
How long does it take to notice a beneficial effect? How long do lapses take to wear off.
Thank you so much.
If I find a diet that I can manage & which helps I will be so grateful
270 grams of unbleach, unbromated, unenriched flour
½ tsp. yeast
1 tsp. salt
6 oz. water
Put the flour in a bowl. Thoroughly stir in the yeast by itself. Thoroughly stir in the salt. Stir in the water, about 2 oz. at a time. Loosely cover the bowl with a flat lid. After 30 minutes, with wet hands pick up the dough, squeeze it a couple of times. Stretch it 2 or 3 times. Let it sit covered another 30 minutes. Stretch it 2 or 3 times. Repeat the resting and stretching 3 or 4 times through the evening. Let the covered bowl sit on the counter over night. In the morning wet your hand and use it like a squeegee to scrape the dough off the sides of the bowl and into a ball. Stretch it 2 or 3 times. Let it sit a few hours or all day. Score it three times with a sharp, wet razor or knife. Put a cast iron Dutch oven (with no plastic handle on top) in your stove. Preheat it for an hour at 500 degrees. With wet hands and fingers spread very wide gently scoop and lift the dough, coming at it from both sides simultaneously, onto a parchment paper. Take the Dutch oven out of the stove and remove the lid. Gently lift the parchment and lower into the DO. Cover and place in the stove. Bake 18 minutes at 500. Remove the lid from the DO, lower the temp to 450 and bake 14 minutes more. Place on a cooling rack.
I mix it in the evening when I’m preparing supper. I scrape it down in the morning. I turn the oven on and score the dough as soon as I get home in the afternoon.
Most of the food you eat on that diet i would never eat most don’t agree with me or can’t afford. Wish when people post these amazing diets they would considerthey are not for everyone. If it works for you or anyone else who can follow it then fine.
I dont eat fruits or vegitables. I almost never eat soup or stew and don't eat gelatin. I have also fasted multiple times 2 days in a row with no relief. Yet I have horrible RLS that has destroyed my life. Glad it works for you though.
Wow, a great deal of information to process. So glad that you have found that the low oxalate diet works for you. I have been diagnosed with hyperoxaluria about 15 years ago. I have been doing my best to stick to the low oxalate diet. It was extremely difficult initially because I don’t eat red meat. I do now eat chicken and do avoid those high oxalate foods. I do eat as many organic fruits and vegetables as I can get. I have not noticed a difference in my RLS. Then again, 18 years ago I’m not even sure if I even had a name for my RLS. My refractory RLS is so bad sometimes, I’m willing to give the low oxalate diet another try. Thanks for sharing your research.
Another thought… I think it would be interesting to compile a list of what type of medical conditions everyone on this forum has to see if there are any similarities and connections. I suspect we may all have some of the same medical conditions.
I agree with you and have wondered the same thing. For example, I have a rare type of leukemia called LGLL and have been curious if there is a connection with my disease or the oral chemotherapy (cyclosporine) that I take daily.
Thanks for sharing. I am pretty certain my symptoms are food related. I also have autoimmune hypothyroidism so your iron comment was interesting. I removed gluten from my diet and had som scary allergic reactions which baffle the consultant as I reacted to so many different foods. I will look onto this and see how I get on. I have been prescribed but refuse to take meds for my RLS. There has to be a better way. I eat organic where possible and cook all food fresh from scratch - this helps thyroid symptoms, I will keep track of RLS once I investigate foods! 🤩
Thanks Notnowdad, very interesting. Would it be possible for you to list some foods I should eat and some I should avoid to achieve low oxolate and fluoride intake and thereby reduce my need for drugs to combat RLS?
I share your frustration that many are ignorant of the effects and powers of diet. I and many others have found relief by lowering carb intake and I have suggested in the past that some moy be sensitive to oxylates or nightshades.
What caught my eye was your comment about when you eat a nice juicy steak, your RLS is bad the next day. Snap. I have always cast aspersions on restaurants / catering companies for pumping my steaks full of e-numbers ... I likewise cannot eat any frozen fish in plastic (such as frozen lumps of monk fish etc) ...RLS catches fire so quickly. (I don't suppose the plastic wrapping has any bearing on it?)?
But I will read up about oxalate and oxalic acid, as I like to explore every avenue. Thank you so much for sharing.
I just found your article after searching “RLS + oxalates”. I can’t thank you enough. I have been dumping oxalates for 7 months now and have been off mirapex for about 18 months..for me, it was an evil brew of so many meds, each designed to make me feel better. Eg ppi’s, antihistamines, then the augmentation of mirapex..too long a story. The RLS foundation newsletter makes me depressed…getting off oxalates has helped a lot but you have given me fresh insights, eg the cookware, canned food, and oxalic acid on produce..i might just go full carnivore and see what happens. Currently we eat a few very low-ox fruits and veggies but maybe will try none. This is the first time i have felt hopeful in a long time.. you will never convince everyone. But every single life you change will be another victory for you and for that person.
Wow, what an article. I have also been searching for alternative medication, change of habits, diets and so on. I’ve tried a homeopathic approach, but unsuccessful at that. I will certainly try omitting oxalic acid and bromide. I‘ m staying clear of fluorides anyway, because of the effect on the pineal gland, trying to decalcifying the gland with chaga mushrooms capsules at the moment. Thank you for your inspiration. Cheers Ohmg
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