Another year of relief

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, 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.
dixielee
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Re: Another year of relief

Postby dixielee » Tue Aug 01, 2017 2:01 am

This thread is very interesting and I would like some more information please. Is there a website that lists food that are high oxalate foods? Also what is the recommended level of oxalate those with RLS should have?
Thanks for sharing your stories. I love to hear good news!

Always hopeful, but sleepy tonight
Dixielee

pamhb
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Re: Another year of relief

Postby pamhb » Sat Sep 16, 2017 6:34 pm

Interesting. I have felt for a while now that my triggers consist of a peculiar group of foods, but that it was very difficult to sort out the culprits without a laborious and difficult elimination and re-introduction process. For example, I began to feel that fresh fruit is an issue, but I couldn't easily tell which fruits were the culprit. However, looking at the foods that give me problems, I can see that many of them fall into the high to moderate oxalate categories. It's certainly worth giving a try!

badnights
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Re: Another year of relief

Postby badnights » Mon Sep 18, 2017 1:31 am

I'm intrigued by the apparent coincidence of high oxalate with high glutamate in foods, since glutamate in a certain part of our brains seems to be in overabundance. I'm not suggesting that there's a link between consumed glutamate and brain glutamate - in fact, I would think the body would be in deep trouble if there weren't some sort of feedback mechanism preventing absorption of substances that are already at sufficiently high levels in the body. But maybe our feedback control is faulty.

I heard something else interesting, that the most abundant amino acid in gluten (one of the main proteins in wheat) is glutamic acid, which is converted into glutamate in our bodies. Somebody had a theory (perhaps there was real science behind it, but I only read a summary) that whole foods (raw and/or minimally processed foods) contain unbroken protein molecules that get digested into peptide chains that get eliminated if we have enough of the amino acids they contain, but broken down and absorbed if we don't; whereas highly processed foods contain freed-up amino acids such as glutamic acid, which get immediately absorbed whether we need them or not, short-circuiting the feedback control.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Another year of relief

Postby ViewsAskew » Mon Sep 18, 2017 5:47 pm

Interesting, Beth.

My husband has celiac - haven't followed the research as much lately... What I recall is that they know from blood tests that it is now 1 in 100 (average) in Europe and the US. Ireland, IIRC, is 1 in 70. Italy is also higher than average.

They also know that - through testing stored blood from US soldiers in WWII - that is was 1 in 5000 in the 1940s. We had been eating processed food for quite awhile at that time, though less processed for many than what followed in the 50s and 60s. Research also shows that particle size and the degree to which we process any food creates many changes in our bodies, including insulin response. Would be very interesting if particle size alone were at least partially responsible for some o this.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

pamhb
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Re: Another year of relief

Postby pamhb » Mon Sep 18, 2017 5:50 pm

I think that the whole issue of food-related triggers is the most perplexing and the most frustrating for all of us. As a group, we know that something is triggering our bad nights, which is not present on our good nights. The problem is that what we identify as potential triggers is so disparate and so different for each of us, that it is difficult to find a single theory that links them all together. We need nutritionists and biochemists to take an interest in researching this disease, so that we can get to the bottom of this...

In the meantime, I'm operating on the theory that my triggers are both biochemical and physical.

-- Drugs and supplements are fairly easy to identify -- anything that jacks up serotonin or suppresses dopamine is going to be a problem.
-- Physical triggers, at least for me, seem to be related to blood circulation -- anything that hampers or suppresses blood circulation to the point of potential hypoxia will act as a physical trigger. Preliminary studies indicate that our disease has an effect on blood circulation to the lower legs, with resulting hypoxia in muscle tissues. Increasing circulation to the legs generally has a positive benefit. Similarly, trigger points in muscle tissue can, if left unattended, result in poor blood circulation in that tissue to the point of hypoxia. I have RLS in my shoulder and upper thigh which seems to originate from particular trigger points. Work on releasing those trigger points has a positive, albeit temporary, effect.
-- The final area is that of food. People on this board have had moderate to good success with two or three different diets, whether it's the Wahl diet, FODMAP, and now low oxalates. What do these diets have in common that we don't yet understand? What are the areas of overlap, and why? We are what we eat...

ViewsAskew
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Re: Another year of relief

Postby ViewsAskew » Mon Sep 18, 2017 11:54 pm

I want food to work...I do think we need to be careful teasing this out. We hear positive things from so few of us, percentage wise. We have no idea if others simply do not try it or if it hasn't worked for them...or if those who believe in diet think it works better than it does!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

pamhb
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Re: Another year of relief

Postby pamhb » Wed Sep 20, 2017 1:02 pm

So I cautiously began the oxalate diet by taking out high oxalate foods and limiting moderate oxalate foods. No spectacular results, but I wasn't really expecting anything right off the bat. Yesterday I re-introduced dairy, which I haven't eaten in about a year. I had a small glass of milk around noon. And sadly, it triggered a heavy attack of RLS last night. Dairy is on the "safe" list for oxalates. While I suppose it is theoretically possible for me to have both dairy and oxalates as triggers, I am a bit skeptical. I may continue this a bit longer to see where it takes me, but clearly a low oxalate diet, by itself, is not the answer for me.,,

badnights
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Re: Another year of relief

Postby badnights » Thu Sep 21, 2017 6:12 am

Ann wrote:Research also shows that particle size and the degree to which we process any food creates many changes in our bodies, including insulin response. Would be very interesting if particle size alone were at least partially responsible for some o this.
This makes sense to me.

pam wrote: I had a small glass of milk around noon. And sadly, it triggered a heavy attack of RLS last night. Dairy is on the "safe" list for oxalates. While I suppose it is theoretically possible for me to have both dairy and oxalates as triggers, I am a bit skeptical. I may continue this a bit longer to see where it takes me, but clearly a low oxalate diet, by itself, is not the answer for me.,,
Casein (one of the main proteins in milk) is 20% glutamic acid - the most abundant of 18 components. No idea if that's significant. Just throwing out ideas, not gathering them into theories.
Beth - Wishing you a restful sleep tonight
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notnowdad
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Re: Another year of relief

Postby notnowdad » Thu Sep 20, 2018 3:43 pm

Update for 2018: I continue to enjoy almost complete freedom from RLS. I don’t consider myself cured because a high oxalate meal can bring it back within 24 hours. When it does recur I know that reverting to my low oxalate regimen will bring relief by the next day.

A few random tips and thoughts: Completely giving up tea seemed to make the regimen work more easily. I’m able to enjoy a carrot a day which has been shredded with a very fine cutting vegetable peeler. Garbanzo beans (chick peas) have also been a reliable source of fiber which are lower in oxalate than many other legumes. I read of research which established that a lower amount of soluble oxalate in a food results in less oxalate being absorbed. Consequently I have been allowing myself some pinto beans because a high percentage of their oxalate in insoluble, although I continue to generally avoid black and white beans, which are significantly higher in total oxalate.

I read a recipe for tomato soup in which it was recommended to add some baking soda to canned tomatoes in order to reduce their acidity as a flavor enhancer. I also read that baking soda can lower the oxalate level in foods. Adding baking soda to beans has long been recommended as a way to speed the cooking process and, since it may lower oxalic acid levels, I have been experimenting with adding it to beans as well as various soups and sauces. However adding it to pasta water makes the pasta mushy. People who are limiting their sodium intake should be careful with the use of baking soda. I was interested to read of a study in which regularly taking baking soda dissolved in water lowered inappropriate autoimmune responses in the body.

The following is from kidney.org: “New research indicates that eating and drinking calcium and oxalate-rich foods together during a meal is a better approach than limiting oxalate entirely because oxalate and calcium are more likely to bind to one another in the stomach and intestines . . .” I have been consuming a lot of cheese and milk. (Although I have been for years lactose intolerant, I have no trouble drinking A2 milk.) I have been enjoying pasta with vegetable cream sauces more often than with traditional tomato sauces.

Although my relief from RLS improved my quality of sleep, I found myself waking up 5 or 6 times a night, a condition known as nocturnia. About one night in three I would not be able to get back to sleep in the middle of the night and would only get 3 or 4 or 5 hours of sleep. When I eat a large serving of pasta in the evening I typically wake up only 3, or perhaps 4, times and I generally have a much easier time getting back to sleep and sleep longer overall. Because I found a Japanese study comparing the sleep enhancing effects of rice and wheat, I conclude that I’m not the only person who is positively affected by consumption of these refined carbohydrates.

Because many of the “healthiest” vegetables are on my “avoid list”, I had for several years been eating a lot of goitrogenic vegetables. I was eating 10 or more servings of broccoli, cauliflower, Brussels sprouts and cabbage each week in addition to making generous use of radishes in salads. I believe I very negatively impacted my thyroid function with this regimen. I have been doing better since I limited myself to 2 or 3 servings of these vegetables per week. I have also been eating iodine rich seafood regularly. In order to keep up my consumption of “fruits and vegetables” I have been eating more low oxalate fruits while maintaining a high use of low oxalate vegetables.

Finally, as I read various posts on this discussion board, it seems that some of the posters are suffering from involuntary limb movement rather than the excruciating internal sensations which are somewhat relieved by restlessly moving the legs and which I know as RLS. While I think it is entirely predictable and appropriate that people suffering from ILM would end up on a discussion board devoted to restless legs, I think it would be useful if people would be specific about their affliction when sharing their successes and failures. I have no reason to assume that a low oxalate diet would be of any use in alleviating involuntary limb movement.

As always, I wish you all the best.

ViewsAskew
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Re: Another year of relief

Postby ViewsAskew » Thu Sep 20, 2018 9:02 pm

Thanks for the update. Lots of great info in your posts.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Frunobulax
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Re: Another year of relief

Postby Frunobulax » Fri Nov 29, 2019 11:59 am

Bumping this excellent thread up, as oxalates seem to be a factor for me too.

notnowdad
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Re: Another year of relief

Postby notnowdad » Fri Nov 29, 2019 5:32 pm

Thanks for the bump, Frunobulax. As it happens I was using the Thanksgiving weekend to compose my annual report of progress.

I have noted there is much discussion on this board concerning ferritin levels. Let me share a story. I have been in awe of our 41 year old daughter’s energy and vitality for her whole life. A very disciplined athlete, she was awarded as the outstanding offensive player all four years on her high school soccer team which was of the caliber to play for the state championship. At the same time she was making straight A’s in one of the top ranked high schools in Texas. After completing her BBA in four years she sought out and obtained two scholarships which paid her way through law school. In addition to establishing a career as an attorney she published a fairly popular cookbook before she was thirty. Recently she has been raising two wonderful kids while establishing a profitable food centric website and instagram identity, she has remained a picture of vitality and health. Recently she was experiencing heart palpitations. Although her blood levels of iron were normal, the doctor’s tests showed a ferritin of level of 5 (with the report defining a normal range as 13 – 200). I said, “Girl, what have you been eating?” Virtually everything from the oat bran breakfast to the spinach salads to the generous use of nuts and nut butters, black beans and tahini (sesame seed paste) to the many cups of tea, etc., etc., made it look like her conscientious efforts to “eat healthy” had resulted in a diet characterized by very high to extremely high sources of oxalic acid. The good news is she is taking iron supplements, eating more red meat and feeling well again. I hope she is following my advice to moderate her intake of oxalate rich foods.

I have continued to record my daily food intake and sense of well being. I have, for many months, been playing with large portions of refined carbs, plenty of low oxalate vegetables and fruits, and no proteins at supper as a way to enhance my sleep. This experiment blended nicely with my preference for Italian cuisine. I was finding the meals could be enhanced with a bit of cheese without interfering with my sleep improvement. I came across a website which explained that dairy is high in tryptophan, a melatonin precursor, which aids sleep. Apparently the insulin spike which results from the eating the refined carbs clears the path for the tryptophan to enter the brain while “blocking out” other amino acids. Mozzarella cheese happens to be about 50% higher than most other dairy products in its ratio of tryptophan to protein. By following my “pizza and pasta diet” I have gone from 5 or 6 trips to the bathroom every night to 2 or 3. When I was in the 5 or 6 mode I often struggled to get back to sleep and about one night in three I would be up from 12 or 1 for the rest of the night. Now I typically remain groggy through my trips to the bathroom and quickly fall back asleep, and I almost never fail to sleep through the night.

Although I have been avoiding non dairy animal protein at evening meals, I have experimented with soups made with homemade chicken broth. My wife has bone density issues and I suspect the gelatin makes a good supplement to the cheese based suppers. Over time the use of chicken broth hasn’t seemed to cause any problems with my sleep quality or rls. However, one day I had made a beef pot roast with my chicken broth for the braising liquid. After we finished the meat which provided several days of lunches there was quite a bit of broth left. I mixed it with water and used it to make risotto for supper. Instead of the usual grated parm cheese I finished the risotto with grated fresh mozzarella. The next morning I was ecstatic because I had slept soundly for more than 8 hours with only one wake up during the night. This was a new record. But then, that evening, 24 hours after the previous night’s meal, I laid in bed with a full blown flare up of rls.

Apparently the glycine in the gelatin of the chicken/beef broth is a sleep aid. As I previously reported magnesium glycinate supplements brought back my rls, and I therefore switched to magnesium malate because I believe it is better absorbed than the popular magnesium citrate. After that experience I found reports that glycine can convert to oxalate in the body. Although I haven’t connected all the dots on this issue I’m reporting it because it contradicts my understanding that concern for eating a low oxalate diet only needs to focus on plant based foods. The following quote from the website of chrismasterjohnphd doesn’t specifically provide the explanation I’m seeking, but it does strongly suggest that I may be onto something of genuine concern :

“There is some research suggesting that gelatin can raise oxalate levels. In theory, this could be harmful for someone at high risk of kidney stones. Glycine is less likely to do this than gelatin or collagen. If you know you are at a high risk of kidney stones, I recommend using glycine instead of gelatin or collagen and discussing this with your doctor. Outside of this one concern, very high doses of glycine have been studied without any adverse effects and it appears overwhelmingly safe.”

So that’s it for now. This year’s progress has been to reconfirm my avoidance of the most “healthy” plant based foods, while indicating that I can safely eat large quantities of refined carbs and dairy products, the two items which most health conscious books and websites are telling me to avoid. And, now I have to be leery of what is, probably, the most healthful animal based food. Oh well . . .

As a final caution I want to remind you not to overdo the goitrogenic cruciferous vegetables. I learned the hard way the immoderate use of these low oxalate “nutrient bombs” can impair the thyroid and lead to all sorts of other problems.

As always, I wish you all the best.

Frunobulax
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Re: Another year of relief

Postby Frunobulax » Sat Nov 30, 2019 9:54 am

notnowdad wrote:Thanks for the bump, Frunobulax. As it happens I was using the Thanksgiving weekend to compose my annual report of progress.


Thanks for sharing. We may have one common factor but some differences: My overall health improved dramatically after cutting carbs and omega-6 http://bb.rls.org/viewtopic.php?f=20&t=10588, including a dosage reduction in my oxycodone from 30mg a day to 20mg. I'll report in a few months if the low oxalate diet makes a difference.

As for iron, there is a lot of controversy. Iron seems to go up whenever we have inflammation, so maybe your daughter is just very healthy. But on the other side I can't confirm any negative side of having high iron. All stories of "keep your iron low" that I know had little or no scientific basis. Seems that we just don't know :)

badnights
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Re: Another year of relief

Postby badnights » Mon Dec 02, 2019 12:38 am

As for iron, there is a lot of controversy. Iron seems to go up whenever we have inflammation, so maybe your daughter is just very healthy. But on the other side I can't confirm any negative side of having high iron. All stories of "keep your iron low" that I know had little or no scientific basi
Ferritin goes up when we have inflammatin. Ferritin is not iron, it's a protein that binds to iron and seems to serve the function of storing iron in our cells until it's needed. It also seems to serve as a transporter of iron when high volumes of iron are required by specific organs, despite that a different protein, transferrin, serves the primary role in transport.

When ferritin values in blood serum are as low as 5, there is a deficiency of iron in some bodily organ.

Too much iron can damage organs, but no one can build up too much iron by ingesting food because of the powerful feedback that prevents iron absorption when there's already a certain level of iron (not ferritin) in the blood - - - unless a person has a genetic disease known as hemachromatosis, which allows iron buildup.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Frunobulax
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Re: Another year of relief

Postby Frunobulax » Tue Dec 03, 2019 11:24 am

badnights wrote:
As for iron, there is a lot of controversy. Iron seems to go up whenever we have inflammation, so maybe your daughter is just very healthy. But on the other side I can't confirm any negative side of having high iron. All stories of "keep your iron low" that I know had little or no scientific basi
.

Ferritin goes up when we have inflammatin. Ferritin is not iron, it's a protein that binds to iron and seems to serve the function of storing iron in our cells until it's needed. It also seems to serve as a transporter of iron when high volumes of iron are required by specific organs, despite that a different protein, transferrin, serves the primary role in transport.

When ferritin values in blood serum are as low as 5, there is a deficiency of iron in some bodily organ.


I'm not sure. And I really mean I'm not sure (and not that you're wrong) :) Yes, serum ferritin of 5 is something that should not be ignored. Having said this, here is the "however"...

We define normal ranges through observations of the population. For examples, cholesterol is usually above normal range if you are on a ketogenic or low-carb diet, so "normal range" is normal only for a population on a high-carb diet and doctors will often push statins for people on low carb diets (which is complete idiocy if you ask me). The same might be true for ferritin: If you observe a population that has high inflammation values (as we do on the western diet), it's conceivable that someone who's healthy has ferritin well below "normal" range. If I learned anything over the last years, then it's that ferritin is not a good measure of iron status. So a very low serum ferritin is certainly unusual, but I'm not sure if it's a problem.

Paul Mason has a good youtube series on blood values including iron (check out https://www.youtube.com/channel/UC3vzrYZcGqpgchc5sYM5Ybw/videos). He stresses that blood values must always be looked at in context...


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