Thank you

[rchobby]

To whoever recommended avoiding foods containing oxalate THANK YOU! I know everybody reacts differently so I try all your recommendations and the oxalate diet has made all the difference to me. I still have symptoms but very mild now and have been able to sleep through for the past week. I am still on Targinact (Oxycode) but have been able to halve the dose.

[LotteM]

Wonderful news! Thanks for sharing.

[Sampsie]

That's fantastic to hear

[Madlegs1]

Good to see the advice working.

The positive feedback is also extremely important for other sufferers.

Thanks. 😎

[dlr222]

after 2 months on low-oxalate I ate more on Saturday and my legs twitched and hurt that night so I could not get to sleep until late. back on the "diet" the next day and will try again some other time. I have about 50 mg of oxalates a day. I eat mostly white rice and vegetables. I make oatmeal bars and can have rice krispies with coconut milk. I am a vegan. info on low-oxalate diet at bb.rls.org/

Donna

[Accipiter in reply to dlr222]

With oxalates you go from one problem, RLS, to now two problems.

I have the opposite issue, I'm increasing the oxalates in food with the oxalate not being absorbed. So I need to eliminate all calcium to stop dumping and have milder symptoms.

[notnowdad]

Congratulations, rchobby. You are on a good path.

Some tips from my experience of becoming virtually symptom free by eating low oxalate:

The body converts glycine into oxalic acid. My RLS came back strong when I switched my supplements from magnesium citrate to magnesium glycinate. This led me to become aware that meat soups and stews are a problem even though the standard advice is that you don’t have to worry about meats. I don’t think glycine rich cuts of meat are problematic, it seems to be the broth. For the same reason, I avoid gelatin products and collagen supplements.

My research into glycine has led me to notice that the scientists also say that vitamin C stimulates the production of oxalic acid in the body. I don’t take vitamin C supplements. I recommend avoiding them until you succeed in clearing up your RLS symptoms.

Although it is low in oxalic acid, asparagus seems to trigger my RLS about 24 hours after ingestion (my typical response time). Apparently asparagusic acid is just as bad as oxalic.

Despite what all the websites recommend I eat a lot of potatoes. I use red, gold or white skinned, peel them and boil them, discarding the water. If I’m putting them into a vegetable soup, I cook them separately and add them at the end. I avoid russets.

I eat a lot of pasta, bread and pizza.

I avoid tea but have several cups of coffee every morning. About 9 ounces of red wine is my daily ration.

Best of luck to you.

[Accipiter in reply to notnowdad]

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

I bow down before you.

I have chronic hyperoxaluria and lucky not have had kidney failure, let alone stone free. You saved my kidneys if not my life. I have had heavy dumping since February and it seems it will take forever to get this stuff out. My body just doesn't seem to absorb oxalate anymore based on the dumping.

Once again I thank you for taking the abuse in your early posts and keeping the original thread active.

[notnowdad in reply to Accipiter]

Accipiter,

Thank you so much for the kind words. It means a great deal to me to know that the message is spreading much better than I realized.

Please tell me more about your hyperoxaluria. Do you have high levels of oxalate in your urine? Is it possible you have the genetic disorder which allows the body to produce too much oxalic acid? Have you had any of the intestinal disorders which are associated with excess absorption of oxalate from food?

[Accipiter in reply to notnowdad]

So here is the short version. Most of my info is based on papers, with a little from low oxalate websites of which some are OK, and Sally K Norton's and her cult members being the worse; they are like the ‘it’s from low brain iron’ people in RLS.

RLS started after I had a few courses of antibiotics, went keto and started absorbing oxalate due to microbiome and most likely the high fat diet reducing calcium levels in gut. Oxalate was mostly from stevia, nuts and vegetables. RLS was from incline walking or running due to oxalate release from muscles. Around 8 years of this with symptoms easily treated and just an inconvenience.

I changed my fish oil dose by accident to higher. Fish oil reduces oxalate from being removed from kidneys. So my oxalate removal system stopped as kidneys essentially got blocked with oxalates, resulting in constant oxalate storage and dumping cycles creating chronic RLS.

Luckily no stones or kidney failure.

A year of this and I went no oxalate to test. I was dumping but resulted in the oxalate storage and dumping cycles being massive, getting bad RLS and feeling bad; even with the right supplements. I did this for a month until I felt like I was going to die, saw a doctor for a kidney test which was 70/90 for function.

I did more research and then took Garcinia Cambogia which started the cloudy urine and clearing of oxalate. I dumped solidly a few times a day and felt OK, but bad RLS. I thought once I cleared the oxalates all would be well. But at 7 months, the dumping is still going although less than when I started clearing.

I went back to carbs when I started no oxalate and took a probiotic (Lactobacillus rhamnosus GG (LGG)) that may have helped when I went back to my old diet but added some carbs as the bacteria needs them to keep a good population and breakdown oxalate.

Consuming oxalate makes no difference to dumping now and I assume my oxalate absorption is back to normal at very low. So I’m now experimenting on managing oxalate dumping and RLS symptoms through the timing and volume of calcium.

The dumping may go on for months or years until I’m clear of it.

[notnowdad in reply to Accipiter]

I have a new suggestion for you. I have greatly improved my susceptibility to RLS by making two more changes in my diet. I have been avoiding all the standard “refined, bleached and deodorized” cooking oils (corn, soy, canola, etc.) and using only unrefined “virgin” coconut oil, cold pressed extra virgin olive oil, and butter. Simultaneously I have been minimizing my exposure to fluoride by filtering my water, avoiding high fluoride foods and beverages (citrus fruits, grapes, wine), and, most importantly, avoiding the toxic fluorocarbons in PFOA and PTFE. This means I don’t use any non-stick cookware made with these chemicals, and I don’t eat any food or beverage that may have been in a can. Much to my surprise, following these two regimens simultaneously changed me from being a person with very serious pollen and dust mite allergies to a person without allergies.

In addition to becoming allergy free, I have been experiencing, at age 72, an incredible level of vitality that I can’t ever remember having had in my adult life. And my very small remaining vestiges of susceptibility to RLS seem to have vanished. I had gotten 95 to 98% reduction in my RLS discomforts by following a low oxalate diet and avoiding glycine rich, gelatinous soups and stews. My only lingering problems have been discomforts while working at a desk or riding in a car for long periods. And there was frequently a low level of “leg awareness” at bedtime. These problems are now gone.

When consumed at high levels, fluoride impairs iron absorption and utilization, slows down thyroid function, inhibits the production of melatonin, and causes damage to the liver. I strongly suspect the brain iron deficiency common to RLS sufferers may be due to fluoride overload. And, I believe, fluoride may be the cause of the inappropriate production of oxalic acid by the liver. I have no proof for these theories, but I have no choice but to continue my current regimen. It will be interesting to see if I someday recover some of my ability to tolerate normal levels of oxalate.

I believe I am more susceptible than most people to the negative effects of fluoride. And, the “industrialized seed oils” seem to be a “co-toxin” that aggravates that problem.Iodine, fluorine, bromine and chlorine are the common elements in the chemical group known as halogens. Some doctors recommend avoiding bromine and chlorine in addition to fluorine because they also impair thyroid function. Bromating of flour is common in the USA. I avoid bromine by baking my own bread with unbromated, unbleached, unenriched flour. My Clearly Filtered water pitchers remove chlorine and chloramine in addition to fluoride.

I hope you are doing alright and I wish you all the best. Jim Hejl