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Sulphur/Phenol Intolerance

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Spleenpoker, Jul 2, 2018.

  1. Spleenpoker


    Hi there everyone. Sorry for the terribly long backstory. Hopefully it adds in some context

    I also apologize for the scattered message. VERY difficult to type anything at the moment. My days just consist of colouring in.

    Some backstory:
    For most of my life(13+) I've suffered from lack of motivation/ambition/drive, along with a host of other symptoms like OCD, lack of concentration, constant flushed face, lack of energy(but never CFS, where I was bed ridden but couldn't exercise much either) among other symptoms(Never brain fog though)

    I was on SSRI's that my GP prescribed since I was 13 and on Vitamin/Mineral supplements, which were quite high doses it seems.

    In 2016, I started getting urinary urgency and I said enough was enough and tried to look for answers. I first started cutting down my SSRI's until I stopped taking them, I stopped all the supplements I was given to "help me"

    During the course of 2017, I had stopped processed foods and eating at restaurants(which I use to do quite often) and started a whole foods diet. I improved quite a bit but was still suffering from terrible urgency and some other symptoms. My new GP then recommended I try the RPAH diet as he suspected I had a food chemical intolerance. Over the course of the next month I transitioned to the strict diet. Most of my symptoms drastically improved. I no longer had OCD, my concentration was back and I didn't even need Ritalin to help me(which didn't work anyway. They took an hour to kick in and lasted an hour before the effect wore off and another dose wouldn't work unless I went off them for a week. Even the slow release was useless. So everything was going decently. The RPAH group mentioned that I had to go without symptoms for 2 weeks before I could challenge myself, I never understood why I couldn't go even ONE minute with a symptom or two(I'm normally suffering from 3 at a time(As of now, 6!) So that challenge period never came. I started researching WHY I had food chemical intolerance as even my new GP was clueless, even though his wife is a million times worse than me..

    My dietitian told me I couldn't carry on the way I was going on the strict diet as I needed to eat more carbs, more protein and more vegetables, so I followed her advice and things just went downhill from there, I was getting more symptoms more often, I didn't know where to turn.

    So around December I tried the GAPS diet to "heal my gut" but that turned out to be the biggest mistake I've ever made. After 3 days of eating chicken broth, I started to get brain fog, which I never ever had in my life before. I couldn't think AT ALL, words were slipping from my mind mid sentence. I was looking at walls all day it was that bad, so I went off that back onto the RPAH diet and things improved... they just never went back to the way it was before in 2017 during the RPAH diet, or even previously!

    So after all that I realized sulphur was my problem and the sick joke was that all the low salicylate/amine/glutamate foods I was to avoid were ALL sulphur foods (Cabbage, Brussel Sprouts, leeks, meat, eggs, dairy, legumes etc) I was encouraged to eat a lot of that to meet RDA's.. So you can see I was setup to fail from the beginning. I never use to overdue protein during the RPAH diet, it was just 100g lamb and 1 medium chicken breast per day, maybe an egg every 2nd day, some lentils, a cup of milk etc. I should have seen the signs, I was getting symptoms then but they were just sooo subtle I couldn't tell..

    Am going for tests in the next month or two after saving up, so not sure yet if its from a toxic build up of Mercury, SIBO, genetics or all of the above but I am struggling with sulphur in my diet.

    Now I am sooo worse of now then I ever was in my entire life. I'm still on a whole food diet, can't do RPAH

    I can't even do supplements to meet RDA's as I am incredibly susceptible to petroleum derivatives which explains why going off processed foods really helped me, no additives etc but all the B Vitamins are made from coal tar and other terrible things.

    I couldn't survive getting my RDA's from whole foods as B12 was incredibly hard to come by and I was restricted food wise because of salicyaltes.

    I had tried in the last month prior a B complex with cyanocobalamin and folinic acid, just to keep my RDA's up but that backfired. All my life I've been sensitive to plastic or any petroleum derivatives. The worst I ever was back in the day was that I couldn't wear headphones without burning my ears, some clothes and my bedding would cause me to itch constantly(Hence antihistamines all my life, dumb GP) BUT now... I can't touch ANYTHING plastic. My computer mouse, nope. The list goes on. Plastic water makes me react terribly. That has come and gone since 2017+ but now it's CONSTANT. I had to swap to glass water(which isn't cheap but what can I do). Can't do tap water as it's too polluted and a carbon filter is FULL of sulphites, I found that out the hard way when the filtered water I tried caused me to stop breathing, never again.

    So I stopped all supplements and I cut back on meat. I eat 33g of lamb per day, with 90g cooked lentils, brown rice, butter and a mix of vegetables like butternut squash, sweet potato, celery, carrots and courgettes, I had to take Kirkmans Phenol Assist just to get rid of the facial flushing, urgency etc...

    Now my brain fog has gone, BUT replaced with brain/head PRESSURE. Still getting shortness of breath and low blood pressure readings/symptoms. I wake up with pressure in my head and it doesn't EVER go away.

    I stopped the salicylates vegetables(Carrots, butternut squash, sweet potato, courgettes) for 1 day and I can touch plastic again, thankfully but now I have no idea what to do about the head pressure... is this sulphur related? I have never experienced this in my life before.. feels like I'm in a pressure cooker...

    So I suspected POTS or anemia, so I had blood tests done for that to check. Everyone mentioned choline helps with POTS and I realized I might not be getting enough from the diet, obviously. So I tried sunflower lecithin powder(Though I suppose I'm just adding to the problem because I know sunflower seeds are high in sulphur, as is everything...)

    I will post my results if someone might help. It does seem to point to Anemia of some kind. I tried checking with my GP, who didn't even BOTHER to check my results, just emailed them to me without saying anything. I can't interpret this.. He doesn't believe(or know) about Methylation or any of those factors, so I can't rely on him. I will be finding an expert but very difficult to do as I am in South Africa. Will look for an international expert, it seems.. If anyone has any advise about finding one, that would be great. I thought about checking with a Hematologist but I figure that's useless if it's caused by my genetics, hell or even SIBO, they would be unable to advise me on anything useful, so why waste my time. I wasted my time going to a Urologist in 2016 about my urgency and they found nothing wrong, so a specialist seems to be a waste as this is a holistic problem.

    If anyone can advise me about my blood work and what I can do in the meantime food wise, what tests I should be looking to do first, what my next steps would be. I'd appreciate that. I have the money saved for tests and doctors now, I just would like to know where to start with that and what I can do to survive and hopefully entertain myself till then. If anyone knows what I can do regarding water, that would be a blessing.

    I also realized it might be a thyroid problem as ALL my issues started around puberty but my also had a very bad life crisis around that time, so I was under tremendous stress and I was on antibiotics quite often back then because of "infections" but could've just been food chemicals etc as I use to have sore throats OFTEN. So I will definitely be getting a stool analysis to see about gut dysfunction as my stools aren't right. I have managed to get regular smooth bowel movements but for the last 4 months they have been yellow. My bilirubin tests check out. I was told it's because when going on the RPAH/FAILSAFE, I no longer am getting any dark green vegetables or any aged red meat which affects it. Not to mention possible underlying anemia (though not iron deficient it seems)

    I got a thyroid test done last year and my GP never said anything about it. At the time I thought it was because everything checked out, but now either he doesn't know or didn't bother to look, so I can post those results too if anyone can make heads or tails of that. It's missing 3 of the main antibodies that are used to test for Graves I believe, but can't get those tests done here...

    Thanks everyone, sorry for the incredibly long message but I am at my wits end right now and just want to know where to go next.
    Learner1, Lalia and alkt like this.
  2. Spleenpoker


    I am not sure how to edit the message, doesn't seem possible, so apologies for the double post,

    PS: I don't have any amalgam fillings, but I do have a few plastic ones :/
    I also realized that I moved into a new flat about 4 months ago, but wasn't as bad the first month or 2 I was here, but my diet obviously changed drastically then too. The flat had new windows put in and new kitchen cupboards, which is now loaded with VOC's but sadly that was out of my hands. The windows also have to be closed all night as there is constant smoke coming in and I react the worst to smoke/fire that can last hours. I will also be getting a mold inspector to come in and do a check. I think the bathroom has a little mold problem, with tiny green dots on the ceiling. Ag..
    Learner1 and alkt like this.
  3. Wishful

    Wishful Senior Member

    I didn't have a problem with a very limited diet. I was trying to avoid tryptophan and niacin, so I lived on cornstarch pancakes for..I'd have to check my records, but I think it was over a year. That avoided the increase in symptoms I had with other foods, but still left a baseline of symptoms. Did I get problems from not eating fruits and veggies and phytochemicals and whatever else is supposed to be in a healthy diet? Not that I noticed. I took a few vitamin tablets in that time, to see if they had any noticeable effect (no). From my experience, I think I could probably go several years on such a nutritionally deficient diet without significant problems. Health food marketers make it sound like you will collapse if you go for several days without veggies (and their brand of supplements, of course).

    Professional dietitians are probably concerned about liability if they deviate from the 'recommended' dietary advice. Also, there is no approved dietary advice for patients with unusual disorders. Lots of standard advice for ME/CFS patients is counterproductive. If you feel worse after professional advice, you might be better off doing your own research and experimentation.
  4. Hi SP - great username by the way. :)

    The sulfur issues can be from arsenic or mercury. You can try molybdenum supplementation. Moly is the co-factor for the gene/enzyme SUOX which processes sulfur. The metals inhibit SUOX by blocking moly.

    As far as the new VOCs in your flat, you can either try painting on a sealer to prevent off gassing or you can rapidly off gas your flat by closing the windows and raising the heat as high as possible in the daytime, then opening the windows and turning off the heat at night.

    You obviously wouldn't want to be living there while doing the heating and cooling cycling process. You would continue until don't smell or react to the VOCs any more. It could take a week up to several weeks.

    AFM Safecoat makes a good nontoxic sealer. I don't know if you can get it shipped SA or not.
    Learner1 likes this.
  5. Spleenpoker


    Haha yeah tell me about it. I was seriously annoyed with the dietitian but this was just any dietitain. She was apparently a RPAH "expert" but that group doesn't seem to be interested in what's actually causing their problems, just avoiding it.

    Haha, thank you!
    Thanks for the advice! What molybdenum do you recommend? I was about to order the Kirkman one but a few users recommended a rice based one? Can anyone explain why that is?
    I have done a bit of reading here on Phoenix Rising and elsewhere and it seems the brain fog potentially comes from ammonia so I assume I'd have to keep my amino acid levels in check? Would make sense as I felt better cutting out meat protein for a bit and those have the highest concentration of amino acids, but I assume I have to still watch the levels because all these grains can add up(I'm looking at oats!).
    It seems ammonia can also be generated through fat, not just protein. I have been overdoing the butter to bulk up my calories.
    I've been using the low thiol but I have heard some users report there are things on there that aren't considered low sulphur, what am I missing on that list? I'm assuming it's things that are just high in amino acids, like oats as I mentioned above?
    @ahmo I see you do foot baths. I'm looking to try either Activated Charcoal or bentonite clay, see if those do anything. I'm a bit hesitant to swallow the stuff right now but it would be a good way to know if it helps, then it narrows down what could be causing it.
    Should I be concerned with the sulphites in a lot of these activated charcoal powders(especially the ones that are derived from coconut husks?
    How much Malic Acid do you use in a foot bath anyway? I do have a magnesium malate here that I can try. I wonder if that would work? Just have trouble swallowing capsules, even tiny ones. I can swallow a massive tablet, but a vegetable capsule, leaves a terrible feeling in my throat(I did read on here that the cellulose is loaded with sulphites... It seems everything is..)
    I also read that some have increased ammonia because of Epsom Salt bathing? I couldn't figure out why though, think it had to do something with the magnesium. @Gondwanaland can you elaborate on that? I need to do Epsom Salt footbaths to get sulphate to help me detox vegetable phenols, but would like to know if it is contributing to my brain fog. It never did last year, but now I think it does make things worse, but I am not sure why and would at least like to know why.
    I'm hoping @dannybex can chime in, as I know they have a phenol problem too and hoping they can advise me.
    Some good news though:
    I think I might have the brain pressure symptom down. I believe it was because I was having a bit of sunflower lecithin because I wanted to get the precursors to TMG so that I could tolerate meat like it said on Andy Cutler's list. A few users complained about their head feeling "swollen" after lecithin. So I've avoided that for the day so far and hopefully in a few days that goes.
    Thanks for all the advice everyone!
  6. Spleenpoker


    Is double posting allowed? I can't find the edit button here :/

    Thanks for the info! Last year during the failsafe I use to eat white rice which was the "safest" food choice, at least for phytochemicals. My dietitian(ag) said that's not healthy, I must switch to brown and avoid gluten.. So for the last few month's I've been eating brown rice as my source of carbs.. I will definitely be changing that! Hopefully the hair mineral test I do will reveal more regarding toxic metals and my essential metal levels.
  7. wonderoushope

    wonderoushope Senior Member

    Hugs! I can't offer advice really.

    I did the RPAH diet too and I eventually did get much better, but I was struggling for like 5-6 months on it. I think the challenges were not even correct for me, as I think my body was just in a bad place and reacted to everything and so getting false positive results. I now don't react that badly to a lot of the foods I challenged. I now can tolerate a lot more, but yeah the diet is hard, especially if you are reacting constantly.

    The key for me ( I think) was having 5 servings of veggies I could tolerate and a cup of lentils and just time. I was reacting to a lot of FODMAPS too, still, do.

    Now I just listen to my body and as soon as it reacts to something I just keep to really simple foods for 3-4 days until it settles. If I have too much histamine foods I tend to have issues.

    I have heard GAP's is a lot harsher on the body than RPAH.
  8. Spleenpoker


    Has anyone here heard about sulphites in bottled water? Obviously the ones that have been passed through a carbon filter is loaded but the mineral waters without carbon filtration still have?

    I was reading the thread above awhile back but really didnt pay it much attention because half the people can't tell the difference between sulphIte and sulphAte. So was hard to take some claims seriously but now I'm giving it some thought. I know they mentioned Acqua Panna as having high sulphite, but just assumed they got mistaken for sulphate for which it is. That's the water I have been drinking and cooking my stuff with as it's the only glass water I can find here. Now everytime I take even a sip, it's definitely activating my nervous system as I get tacycardia and sensitive to noise and getting frights VERY easily from things far in the background, like someone washing dishes.

    Is there a way to tests the sulphite conent? I'm planning on ordering some sulphite/sulphate test strips in the mean time to roughly gauge my levels, I wonder if it will work with the water?

    Thanks for sharing!

    I think sulphur was an underlying problem for me last year when I did the RPAH, it just wasn't as bad as it is now, because I was getting shortness of breath and lightheartedness when standing etc.

    The only problem for me was that ALL the food I use to make (Any kind of grain, steaming and rinsing ALL the vegetables and even steaming meats) is all made with water. So I react to EVERYTHING but 90% its not the food but the water I used. Which makes it impossible really. Last year I kept thinking that it was the foods even the ones considering safe but then realized it was the food that was made with the most amount of water(Tapioca, sago, sorghum, rice, millet, barley, quinoa, buckwheat). I realize some of them were high sulphur but even just drinking a glass of said water gives me a way worse reaction, so I managed to put it down to the water, then the type of water container(plastic) but now it seems sulphites might be involved :/ I can't use tap water because it's full of chlorine, among other things.

    Does anyone have any advice regarding water filtration? I was thinking distilled water but without a carbon filter at the end I don't think it removes much.

    I even read on another thread here that sulphites can eat up Thiamine, which can cause sound sensitivity and head pressure. Which makes sense because now I am constantly drinking the Acqua Panna since it's in glass which I did VERY infrequently before but since taking some supplements (Which most turned out to be bacterial fermented(more sulphites...)) and eating moderate salicylate vegetables my intolerance to plastic was at an all time high. Cutting out the supplements and the mod sal vegetables, I can now touch plastic again, thinking about trying to drink plastic water and see what happens.

    So I thought I should try a B1 supplement but then that same thread mentioned you need B2 to activate and use B vitamin forms. So it's rather confusing and a bit annoying haha.
  9. Lalia


    Hi - I don’t have much advice to help you unfortunately, but I did want to reach out to let you know you’re not alone with all the food intolerances. I think our root causes are quite different, because I have markers of autoimmunity, which I think is why my diet is so restricted. I can only eat about ten foods and have been stuck that way for almost a year now. I believe it’s a complete loss of oral tolerance (my immune system is in overdrive so my body attacks any food that I don’t eat regularly).

    Similar to you, I went through a period of reacting quite severely to all foods and ended up eliminating so much and then being unable to reintroduce. Anyway, the food issues are really tough and I hope you get to the bottom of things. When I had issues with ammonia in the past, someone recommended l-ornithine (which I didn’t tolerate) and yucca schidigera (which was helpful for some time).

    All the best!
  10. I use Nutricology Liquid Molybdenum. 1 drop is 25mcg.

    I did the Heartfixer CBS Protocol, but used Cutler's Free Thiol list for diet instead as it was less restrictive.
    The important part is the thiols, not sulfur per se. The thiols mobilize mercury and cause symptoms. Explanation and Generic Plan of Action

    (The Heartfixer page seems to have changed some since I used it.)

    I was doing 75mcg moly, yucca and charcoal. I was monitoring sulfur levels with urine sulfate strips. It took me 3 months to get from 1200 to 800. 800 is an in between number on the strip, so it's hard to read. I couldn't get it lower than that. But it was good enough.

    Then I switched to 25mcg moly for maintenance. Then I could go back to eating moderate amounts of sulfur foods with no issues. I was also able to tolerate some B12, which is why I did the protocol in the first place.

    After a few years, I got overdose symptoms from the moly so I discontinued for a couple years. I've just recently restarted moly, 25mcg a couple times a week.

    I don't know about rice based moly.
  11. Yes, I've been through this too. I went gluten free years ago and ate a lot of rice. I have many symptoms of arsenic based on Cutler's info.

    I mostly avoid rice now, but still eat it from time to time. Rice from the southern US is the worst because it was grown in soil where the pesticide lead arsenate was used.

    I think the cleanest sources are from areas like Thailand, but there is still a bit of arsenic as the rice plant will uptake any naturally occurring arsenic in the soil.

    You can remove any additional arsenic with the preparation of the rice, such as rinsing it thoroughly before cooking.

    Wild rice is the safest.
    Learner1 likes this.
  12. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    vaer likes this.
  13. Spleenpoker


    Thanks for all the info everyone!

    I will post my test results soon and hopefully someone can give me a bit more of a clue so I can research a bit before my appointment with my doctor. Don't want it to be a waste of an appointment, so hoping to go in armed with some knowledge

    Does anyone know anything about distilling water? I can't drink tap water because of chlorine but can't filter it with a carbon filter either because of sulphites in the carbon. I also can't seem to tolerate any bottled water, probably the springs contain sulphur or something else.
    If anyone can give me some advice, i'd appreciate it.
  14. Wishful

    Wishful Senior Member

    If you can't find distilled water in a food store or a drugstore, check the automotive supplies stores. It's used for topping off batteries (though most car batteries are now maintenance-free). If you can't find a source, you can make your own temporary distiller easily enough. If distilled water proves worth the effort, you can make a better unit later.

    There are also other ways to remove sulfur from water; check online Storing it in a genuine silver container might work (might be slow though).

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