Another year of relief (Low-oxalate diet)

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

So, for those of you who experienced relief: Was it immediate? I started to go low oxalate and frankly have seen no change for two weeks now. On the other hand the mechanism that I suspect would take time to kick in.

In my literature search I came across several things that oxalates will do.
  • Obviously oxalates bind to calcium and magnesium, causing deficiencies of those minerals.
  • They crystallize in your body just like uric acid crystals. So you'll see a dump phase once these crystals are dissolved.
  • I have seen no clear explaination for the connection between uric acid and oxalates, but the data suggests there is correlation. Uric acid is known to change slowly, and it will take a few months to see significant changes. I do have high uric acid, so...
  • Someone with a leaky gut (which I had or have) will have increased oxalate intake, and oxalates can cause leaky gut. This vicous cycle takes time to break.
  • My big issue is still metabolic syndrome. I was prediabetic and am still insulin resistant, and hyperinsulinemia causes leaky gut too. We know that kidney function is impaired in metabolic syndrome, and kidneys are responsible for oxalate elimination, so who knows if we got the causalities wrong?
So I guess my timeframe is about 3 months, after which I'll have myself tested again for uric acid and leaky gut, and I'll check if there is an oxalate test that the laboratory of my choice does too. I wanted to go carnivore or mostly carnivore for a while anyway which will pretty much eliminate oxalates from my diet (except for tea, which I now take with a bit of magnesium citrate to eliminate the oxalate -- tea is one of the few pleasures that I still indulge in). Additionally I take generous amounts of magnesium, calcium, potassium and collagen to flush the uric acid and oxalates out. Let's see if this does something :)

notnowdad
Posts: 33
Joined: Thu Jan 14, 2010 7:41 pm

Re: Another year of relief

Post by notnowdad »

I would consider avoiding the collagen. As I get deeper into my investigation I realize glycine, gelatin and collagen probably all generate oxalate in the body. I have reviewed my diary and found numerous examples of unexplained leg discomfort on the days after I had beef stew. I haven't gotten the bad reaction from steaks but the cheaper cuts of meat cooked in liquid are a much more collagen rich food. Chicken and turkey broths, even very gelatinous ones, don't seem to be a problem for me but I'm keeping a watchful eye as I experiment with them.

I gave up tea. I don't know if magnesium citrate is an adequate binder. My favorite household cleanser says Warning: Contains oxalic acid. If swallowed give milk and contact physician.

Good luck to you.

notnowdad
Posts: 33
Joined: Thu Jan 14, 2010 7:41 pm

Re: Another year of relief

Post by notnowdad »

And, Frunobulax I apologize for not addressing your direct question. I have recently been receiving private messages from a 20 year sufferer who has preferred not to discuss his issues publicly. He went "all in" on the low oxalate diet and got relief within 8 days. This is consistent with my experience.
I would say if you haven't had dramatic improvement within a week or so, you may need to review your diet and/or supplements. Having said this, I have to consider, I suppose, that it could be possible for some people to more effectively store oxalate in their bodies and have a longer cleansing period. I hope we can hear from some more people and get more views. Again, best of luck to you. Let us know how your are doing.

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

notnowdad wrote:I would consider avoiding the collagen. As I get deeper into my investigation I realize glycine, gelatin and collagen probably all generate oxalate in the body. I have reviewed my diary and found numerous examples of unexplained leg discomfort on the days after I had beef stew.
Curious about the collagen. Oxalates increase uric acid, and collagen is supposed to lower uric acid. Also collagen is supposed to repair leaky gut, a common issue for people that are oxalate sensitive. Also collagen intake is a lot higher on a carnivore diet, yet there is no evidence of increased risk of kidney stones there. If anything, kidney stones get dislodged because they shrink.

Someting does not fit here. I'll have to do some more research to understand this puzzle.
notnowdad wrote: I gave up tea. I don't know if magnesium citrate is an adequate binder. My favorite household cleanser says Warning: Contains oxalic acid. If swallowed give milk and contact physician.
The thing is, people notice oxalate calcium kidney stones, and the common knowledge is that calcium binds oxalate so we should ingest enough calcium (which I do via supplements). But magnesium binds to oxalate very well, and is more soluble. Thus, in theory magnesium will flush out oxalates more efficiently because the magnesium oxalate salt won't crystallize. Also I've read that magnesium will neutralize oxalate even in the gut. I know the tea tastes very different with magnesium citrate, very mild and not as bitter as usual.

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

notnowdad wrote: I would say if you haven't had dramatic improvement within a week or so, you may need to review your diet and/or supplements. Having said this, I have to consider, I suppose, that it could be possible for some people to more effectively store oxalate in their bodies and have a longer cleansing period.
Or oxalates are not the problem :)
RLS seems to have very different pathomechanisms, and different people react to different treatments. We'll see.

wilabozo
Posts: 12
Joined: Sun Jan 20, 2019 8:31 am

Re: Another year of relief

Post by wilabozo »

I have recently embarked on a low oxalate diet and seeing good results. I have experienced some nights completely RLS free, although it will take time to get the food combination right.

I have been looking into the correlation between Parkinson's disease, Alzheimer’s and RLS and found one very interesting research paper published this year*

It studied the brains of Parkinson's disease patients and found calcium oxalate crystals in the substantia nigra, the area of the brain that sends signals down the spinal cord to control the muscles of the body.

Parkinson's disease is characterized by the loss of dopamines, the main neurotransmitter, in the substantia nigra.

In short, these crystals destroy dopamine and spark an inflammatory response.

This seems related to RLS because pramipexole, a dopamine agonist, is known to relieve the symptoms of RLS.

Two types of crystalline particles, known to activate the NLRP3 inflammasome were found: calcium oxalate and TiO2.

Calcium oxalate is found in many green, leafy vegetables such as spinach.

If you have a leaky gut, you can absorb more than 50 times the amount of oxalates. Once in the body, the crystals tend to gather in damaged tissue.

Symptoms of oxalate poisoning are varied, but include gout, tendonitis, joint pain, teeth problems, sleeping disorders, mental and emotional fatigue.. and perhaps dementia.

In an uncanny coincidence, women who suffer from vulvodynia tend to get the symptoms from 10pm until 4am. Sufferers who have tried low oxalate diets have reported great relief.

When you first embark on a low oxalate diet, the body can find relief within the first week, but then try to expel the crystals causing a flare up of symptoms. From the literature I've read, it may be better to start slowly and not expect too much in the first 3 weeks or so, but gradually see improvements after that.

*Submicron Crystals of the Parkinson's Disease Substantia nigra: Calcium Oxalate, Titanium Dioxide and Iron Oxide
https://www.biorxiv.org/content/10.1101/523878v1.full

wilabozo
Posts: 12
Joined: Sun Jan 20, 2019 8:31 am

Re: Another year of relief

Post by wilabozo »

I have been dealing with RLS for over 20 years. Going low oxalate has given me great relief very quickly. I have had some days and nights completely free of all symptoms. This week I had a couple of nights where I was back up to 2 or 3 on the 10 scale but I slept well anyway. I also had one really bad night which I am pretty sure was caused by the previous night’s ramen noodles in pork broth. It cleared up by the next day and I’m back on track.

wilabozo
Posts: 12
Joined: Sun Jan 20, 2019 8:31 am

Re: Another year of relief

Post by wilabozo »

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. I've been careful what I eat without going overboard. It's just a matter of identifying which foods have high oxalates and gradually fading them out, such as spinach.

XenMan
Posts: 80
Joined: Sun Aug 26, 2018 7:41 pm

Re: Another year of relief

Post by XenMan »

It is easy to test. Go oxalate free and you will know.

After the despair of 'there is nothing to eat', load up with meat and dairy, white chocolate and rice pudding, and it is on.

If you are keto adapted it is easy, but if not the white chocolate and rice pudding hits the spot.

I have gone all in to dump the poison with an oxalate free diet. Day 1 nothing, day 2 felt the worse I have generally for a while with a headache and mild burning legs, and day 3 after a bad RLS night, I don't feel too bad.

You will know with only 3 days of investment with a diet change. Then you can then decide to slowly reduce oxalates or continue on cold turkey.

For me it ties together all the experiences and research on RLS together.

I'm looking forward to some RLS relief to come, and many thanks to notnowdad and others who have experimented instead of just following the dogma of RLS.

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

XenMan wrote:It is easy to test. Go oxalate free and you will know.

After the despair of 'there is nothing to eat', load up with meat and dairy, white chocolate and rice pudding, and it is on.
If you are keto adapted it is easy, but if not the white chocolate and rice pudding hits the spot.
I don't miss rice pudding, but keto and white chocolate go together very well https://www.gnom-gnom.com/sugar-free-ke ... chocolate/ :)
In fact I just bought a big bag of cocoa butter and will create some chocolate variations. And you can always replace rice pudding with mascarpone/cream cheese and berries. Yummie!

My RLS is not improving BTW, but my gout-like symptoms (tingling in the toes and other joints, coincides with high uric acid measurements) have disappeared with my low oxalate diet. Will have my uric acid tested again in a month...

XenMan
Posts: 80
Joined: Sun Aug 26, 2018 7:41 pm

Re: Another year of relief

Post by XenMan »

Sad to hear your RLS hasn't improved, but good news on the gout-ish thing.

I wouldn't expect the low oxalate diet to help everyone. But what it does indicate is that RLS is a syndrome, as suggested. There is too much 'RLS is A' when it is actually A + B + C. It is not worth participating on most forums, including this one, as if you say RLS is impacted by 'this' there is an aggressive defence that it can only be one thing based on what that person is using as treatment.

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

XenMan wrote:Sad to hear your RLS hasn't improved, but good news on the gout-ish thing.

I wouldn't expect the low oxalate diet to help everyone. But what it does indicate is that RLS is a syndrome, as suggested. There is too much 'RLS is A' when it is actually A + B + C. It is not worth participating on most forums, including this one, as if you say RLS is impacted by 'this' there is an aggressive defence that it can only be one thing based on what that person is using as treatment.
Oh, absolutely. But wouldn't it be fascinating to understand why oxalates and iron deficiency both cause RLS? What's the connection? :)

XenMan
Posts: 80
Joined: Sun Aug 26, 2018 7:41 pm

Re: Another year of relief

Post by XenMan »

Frunobulax wrote: Oh, absolutely. But wouldn't it be fascinating to understand why oxalates and iron deficiency both cause RLS? What's the connection? :)
I've discussed theories with you previously, so i will just say we have to agree to disagree, and it is just a waste of my time to do that again.

There are plenty of papers on oxalates and the connection to vitamin and mineral deficiencies, low brain iron and even in the brains of people with Parkinson's. There are also papers showing dopamine down regulation in people who are sleep deprived without RLS. If you look outside the limited and zealous views, and selective research, from sites like this and their ilk the big picture of RLS is kind of basic to understand.

So for those who want see RLS solely as a neurological condition, good luck with that.

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

XenMan wrote:
Frunobulax wrote: Oh, absolutely. But wouldn't it be fascinating to understand why oxalates and iron deficiency both cause RLS? What's the connection? :)
I've discussed theories with you previously, so i will just say we have to agree to disagree, and it is just a waste of my time to do that again.

There are plenty of papers on oxalates and the connection to vitamin and mineral deficiencies, low brain iron and even in the brains of people with Parkinson's. There are also papers showing dopamine down regulation in people who are sleep deprived without RLS. If you look outside the limited and zealous views, and selective research, from sites like this and their ilk the big picture of RLS is kind of basic to understand.
I honestly don't know what you're referring to and which of my view you don't share. Using the search function I found a couple of threads where you claimed that something I said was wrong, without giving a reason.

If the connection between oxalates, iron and RLS is obvious, then you'll surely be able to point me towards the place where it is explained?

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

XenMan wrote:There are plenty of papers on oxalates and the connection to vitamin and mineral deficiencies, low brain iron and even in the brains of people with Parkinson's. There are also papers showing dopamine down regulation in people who are sleep deprived without RLS. If you look outside the limited and zealous views, and selective research, from sites like this and their ilk the big picture of RLS is kind of basic to understand.
You know, it's really a GREAT help for others if you hint that you know something important but then refuse to share the knowledge.
A pointer towards studies, research papers or whatever would have done the trick.

Why exactly are you here? To show off that you know more than we do? To have a place where you can be rude to others?

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