Reducing Sulfur & Glutamate

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.
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yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Reducing Sulfur & Glutamate

Post by yawny »

Hi everybody. For the past couple of weeks, I’ve been experimenting with a low-sulfur diet. I’m not 100% sure this will last, but I’ve had remarkable results. Even though it’s preliminary, I want to share what I’ve found, in case it can help someone else.

After tracking what I eat and how I sleep for a long time, I noticed that I might have a sensitivity to glutamate. I tried a reduced-glutamate diet for a month or so, with inconsistent results. Then I did some research and learned that glutamate sensitivity can result from genetic mutations that cause sulfur sensitivity. If your body isn’t processing sulfur properly, you can wind up with too much glutamate. That can cause RLS and insomnia. Interestingly, those same mutations can result in ammonia buildup in the body, as well. Ammonia buildup is associated with neurological effects, like brain fog, twitches, and RLS-like symptoms.

I ran my 23andMe results through Genetic Genie and discovered that I have a bunch of relevant genetic mutations, including the up-regulation mutation in the CBS gene. A researcher named Dr. Amy Yasko has proposed that this mutation results in sulfur sensitivity and a buildup of glutamate and ammonia. Her position isn’t supported by the scientific community, but her treatment plan, based on her interpretation of the mutation, has consistent, positive outcomes. So I figured I’d try her protocol, which starts with a low-sulfur diet.

(I should point out that, despite my summary above, this metabolism, genetic stuff is over my head. So please don’t grill me! If anyone can add more depth or clarification — that’d be great.)

After a week on a low-sulfur diet (also coupled with the reduced-glutamate diet I was already on), my sleep duration has increased and the RLS, PLMs, and twitching symptoms have greatly improved.

I also purchased some scientific strips for testing sulfur in my urine and confirmed that my levels were a bit high before I changed my diet, and now they are lower.

I can’t say it’s conclusive, but it’s very promising. It probably doesn’t work for everyone, but it might be worth trying if you have the CBS up-regulation mutations (you can check that by running your 23andMe (or similar) genome through Genetic Genie). Even if you're unsure of your genetic situation, you could try a low sulfur diet for a week or two and see if there's any relief.

As a caveat, I should point out that I started progesterone cream (Emeritas brand) three months ago, and find that it has reduced my anxiety and insomnia, and gives me a more “natural” (vs drug-induced) sleepiness before bed. It also made it easier to fall back asleep when I wake up in the night, so I rarely have to take more meds in the night. It’s possible that the progesterone effect has been slowly building in my body, changing my hormone balances, and that it is responsible for the changes I’m experiencing. But, given the correlation between my symptoms, my diet, and the measurable change in urine-sulfur levels, my money is on the sulfur.

If anyone's interested, here's some related reading...

http://www.livingnetwork.co.za/chelatio ... food-list/

https://www.drlam.com/blog/foods-high-i ... thy/18846/

http://www.holistichelp.net/blog/how-to ... glutamate/

https://chriskresser.com/beyond-msg-cou ... ur-health/

ViewsAskew
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Re: Low-Sulfur Diet

Post by ViewsAskew »

Wow, that would limit my veggies to the point I would only eat lettuce, carrots, squash and sweet potatoes. Beets bother me (I do love them), corn bothers me more and I cannot stand eggplant.

So glad it is helping you and hope it continues.
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.

yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Re: Low-Sulfur Diet

Post by yawny »

Actually, for veg and fruit, I have only been eating cucumber, carrot, celery, tomato, and apple. I added zucchini today. Even if low sulfur works for me, I'm not confident there still aren't one-off food intolerances so for now I'm taking it slow. As far as long term, I haven't thought about it much since I'm fully immersed in the experiment at the moment. The extra sleep has been so lovely that it is the treat right now. This condition has definitely helped me to enjoy the now. You just never know how long it'll last.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Low-Sulfur Diet

Post by ViewsAskew »

I remember doing elimination diets - eating only chicken and a few veggies, not fruit, no starch. Took months to do. But, I think I always thought I would get back to a more balanced diet eventually, which made it very tolerable to do. And I was very happy to stop eating the things that bothered me!

Hope it keeps working for you!
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.

legsbestill
Posts: 561
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Low-Sulfur Diet

Post by legsbestill »

Yawny, I love hearing about helpful dietary regimes. I seem to recall reading a study at Johns Hopkins that found raised levels of glutamate in RLS sufferers. My understanding is that they surmise this may be responsible for the insomnia dimension to RLS (independent of the more obvious sleep disrupting urge-to-move) which has proved such an intractable problem for me (in an effort to achieve sleep I now consume marijuana in the evening so please excuse if this does not make sense or repeats or, indeed, contradicts something I posted a day or two ago - am well under the influence of the drug though sadly still evading the arms of morpheus).

I had time today and read through your links which were fascinating. In the course of my reading, I noticed reference to the positive benefit of a ketogenic diet on RLS. I have a feeling I have seen it discussed here a while ago. I found the following article https://blogs.scientificamerican.com/mi ... antageous/ which references some small scale research which supports the proposition that a ketogenic diet can have a positive impact on a variety of neurological disorders. One of the ways it is supposed to work is by reducing Glutamate and converting excess glutamate to GABA. There are a number of other possible reasons proposed to explain the positive impact of the diet for neurological conditions. It seems to me that I may get a double benefit here (1) if, as is currently believed, RLS/WED is a neurological condition the diet may assist; even if it doesn't help with urge to move RLS/WED, (2) the reduction in glutamate levels may at least help with the insomnia dimension.

A ketogenic diet is not the same as the low-sulfur diet but I might try it as a starting point. I tried it before years ago as part of a gym training programme I did and found it surprisingly tolerable.

Rustsmith
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Re: Low-Sulfur Diet

Post by Rustsmith »

legs, several years ago just after I was diagnosed with severe RLS and was starting my first time through augmentation, my wife and I both went onto modified versions of the ketogenic diet. She went with the strict form and I went with slightly higher carb levels in order to get the calories I needed as a distance runner. Since I was going through augmentation, it is hard to tell whether it helped or not, but it certainly did not hurt. We both did quite a bit of research at the time and what sold us was the fact that the diet was used over 100 yrs ago for treating epilepsy patients. The diet was dropped when "modern" anti-epilepsy drugs became available, but is starting to gain favor again as a way to treat kids who do not respond to modern meds.

I finally had to go off of it last year because I simply could not get enough to eat. I added back lots of carb calories, cut back on my running to reduce calorie expenditure and was still losing weight (and anyone who has seen my Stephen's Story RLS video knows that I don't have any weight to lose). I finally found out that it had to do with my thyroid med, which I stopped in January. My GP agreed only after I explained how much I was eating yet my BMI had shifted from low normal to underweight. I haven't gone back on the diet simply because my current combination of meds seems to be working well most of the time.

But with that all said, it is certainly a diet that is easy to stick with if you do the research to find out how to do it correctly. If it helps with the RLS - GREAT. If not, then maybe it can help you lose some weight (but not like I did :lol: )
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

legsbestill
Posts: 561
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Low-Sulfur Diet

Post by legsbestill »

Thanks for that, Steve. After I posted, I did a search of the forum and found loads on ketogenic diets, particularly an excellent long and detailed thread by Beth. As expected, results for improved symptoms in severe RLS were patchy (your assertion that 'it certainly did not hurt' probably best covers it).

One of the reasons I am not rushing to embrace dietary option (she says, failing to mask the true problem of lack of will power), is that I am eating very little in any event since coming off mirapexin a little over a year ago. I find that I have a very small appetite now - I'm still not sure if this is attributable to the dopamine agonist causing cravings for food, particularly sugary food and that problem is now removed or to the kratom which I now take, acting as a 24 hour appetite suppressant.

I currently eat a good helping of oats with dried apricots and honey in the morning (which would obviously have to be replaced for a ketogenic diet) and a small portion of a hazelnut, date and cocoa dip in the evening to mix my coconut cannabutter into (ditto - though apart from the dates there is no sugar in there). Apart from that I eat very little. So there isn't a whole lot to upset my system - though I do realise that there are many diets, including a ketogenic diet, that would condemn some or all of the constituent parts of this regime. And of course my two or three cups of milky coffee (75% decaffeinated) would also have to go which would be a loss.

I was slightly overweight to begin but my weight has dropped substantially over the year with no effort so weight loss is happily not a major priority for me.

I am usually fairly active but have been planning to return to the gym and take up running again to try to help with my insomnia issues (I always sleep better after a day of relatively vigorous exercise - unless I overdo it when the RLS will always strut its stuff) and I presume that would increase my appetite. Unfortunately I sprained my ankle a while ago and have hampered recovery by catching it in bed clothes intermittently and sort of pulling at the sprain which has repeatedly set it back a few days.

badnights
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Re: Low-Sulfur Diet

Post by badnights »

One thing that surprised me about the ketogenic diet was how long it took for me to overcome my socially ingrained habit of avoiding fat. The prevailing "wisdom" when I was growing up was that fat was evil and carbs were good (whereas my mother grew up being told that carbs (starches, specifically) were evil. So to speak). So, even when I thought I was eating lots of fat, it turned out I wasn't. That might not be a problem if you actually measure or weigh your macronutrient intake, which I could never bring myself to do.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

veldon75
Posts: 51
Joined: Sun Sep 21, 2014 3:45 pm

Re: Low-Sulfur Diet

Post by veldon75 »

I eat a lot of boiled eggs they contain sulfur a Dr. said sulfur was good for you, but in RLS patients Glutamate is definitely a problem. I read an article on it how MSG is glutamate and keeps you awake.

yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Re: Low-Sulfur Diet

Post by yawny »

legsbestill wrote:I did a search of the forum and found loads on ketogenic diets...


legsbestill & Steve, I considered the ketogenic diet after my doctor said, "you need to go on the ketogenic diet" but I couldn't get past all the information I was learning about high glutamates in dairy and meat which I believe are staples of the diet. This is really simplistic thinking (which I do best) but Johns Hopkins doctors finding high glutamate in RLS brains leads me to believe I should reduce glutamates. That and all these other smart people saying that glutamates cause neurological problems. That said, maybe I'll be on a ketogenic diet in a year.

veldon75 wrote:I eat a lot of boiled eggs they contain sulfur a Dr. said sulfur was good for you, but in RLS patients Glutamate is definitely a problem. I read an article on it how MSG is glutamate and keeps you awake.


veldon75, I used to eat boiled eggs every morning but my symptoms improved when I removed them. Exactly, MSG is glutamate, and I didn't realize that until I was in the midst of researching what the link was between my food intolerances (my nighttime PLMs become very aggressive and I have worse insomnia) to vinegar, fermented vegetables, mushrooms, and Parmesan cheese. I stumbled on an interview with a biochemist who "cured" her daughter's autistic behaviors by removing glutamates from her diet. For me, it was the first article that made the whole glutamate issue easy to understand. The doctor contends that glutamates cause all sorts of health problems including some minor ones that she used to have before removing them from her diet.

I thought I was eating very healthy until I read that interview. I didn't realize how the food industry disguises MSG by using so many didn't names that don't sound bad for you like "natural flavors" or "other spices." And you'll find MSG in organic foods too (I found them in tons of my favorite health foods at my Whole Foods grocery store). It's really everywhere and so I'm experimenting with preparing all my own meals with few processed ingredients. I do eat rice cakes that have no MSG. I remember when I first tried rice cakes and exclaimed, "who in their right mind would eat this?" Well, I love them now mostly because this diet has completely flipped my ideas of eating on its head. I enjoy the dry styrofoam disks with slices of avocado and a sprinkling of pink salt.

https://unblindmymind.org/wpsystem/wp-c ... dients.pdf

In addition to removing high sulfur foods and processed foods with glutamate, my latest diet change is removing the known high glutamate foods: dairy, gluten, soy, yeast, Parmesan cheese, mushrooms, tomatoes, and peas. It was very challenging at first as I used to love a bowl of pasta with red sauce and Parmesan almost every night. (In fact, I was eating that while doing the low sulfur diet and sleep was still improving.) But you can change your perspective it seems. I'm very stubborn and set in my ways but I've adapted. Maybe it helps that I'm telling myself that this is an experiment to see if I can get more sleep. That has been my daily goal every day for years now.


*Interview with Dr Reid:

https://missionheirloom.wordpress.com/2 ... o-vinegar/

*If anyone is interested in reading some of Dr Yasko's work, here is a document on glutamates that I'm currently trying to decipher:

https://www.scribd.com/mobile/doc/28115 ... rigenomics

*Dr Yasko refers to another doctor's work on glutamates, a retired neurosurgeon:

https://www.amazon.com/Excitotoxins-Tas ... l+blaylock

badnights
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Glutamic acid in gluten and casein

Post by badnights »

I was fascinated to learn that the most common amino acid in gluten and casein is glutamic acid (which can be converted to glutamate in the body). I haven't dared to touch gluten or dairy since I stopped it in 2014 as part of a ketogenic diet (written about elsewhere). I was able to drop my medications from 18 (sometimes 21) mg hydromorph contin per day to 9 (sometimes 12) mg, over about 6-9 months. I also stopped anything with added sugar and all things processed. According to that Dr. Reid, most things with sugar added also have additives that include glutamate, as do most most processed things. So I was unwittingly stopping a lot of glutamate consumption.

Fascinating.

Now I have to re-think something I've been doing since 2014 as well, which is making bone broth the Wahls way, long simmers up to 24 hours with a shot of vinegar in the pot. The longer you simmer and the more acidic it is, apparently, the more glutamate is released from the bones - and god forbid you forget the heat on high and it boils, because that makes it worse. (I admit to doing that a time or two).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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