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Is this salicylate sensitivity?

Discussion in 'Gastrointestinal and Urinary' started by outdamnspot, Sep 10, 2018.

  1. outdamnspot

    outdamnspot Senior Member

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    @Gondwanaland brought up Salicylate sensitivity after I said that I'd been getting very sick eating avocados. I've noticed similar symptoms from other high-salicylate foods: instant depression, breathing problems, a strange taste in my mouth, dry mouth and excessive thirst, strange-smelling urine (not sure if that's related?). I had some pure honey before bed a few nights ago and crashed severely the next day. I've noticed a small improvement in fatigue from cutting out high-sal foods.

    The thing I'm wondering is whether I should cut out coconut oil too, and if there's anything I can replace it with? Coffee on its own boosts my mood and gives me euphoria; ditto with MCT oil. However, adding in coconut oil instantly makes me depressed. I'd always thought this was just 'die-off' but it's been two years. I'm on a Keto diet and do find the fat in the coffee helps me fast for a few hours and I don't get the same effect from coffee on its own; I can't have butter because of lactose, and MCT oil is too strong.
     
    Wayne likes this.
  2. Gondwanaland

    Gondwanaland Senior Member

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    Sounds like it, yes. Do you have MTHFR SNPs? I find that B2 helps with it.
     
  3. outdamnspot

    outdamnspot Senior Member

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    I did have the MTHFR mutations but I can't remember which exactly. When do you take the B2? I found it made me a little sedated.
     
  4. Gondwanaland

    Gondwanaland Senior Member

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    After dinner or at bedtime :sleep:

    B2 is just a piece of the puzzle, magnesium, vit A + glutamine + glycine in eggs are also needed. I find that reintroducing eggs to my diet did a lot to help me tolerate salicylates. Choline is not my friend, so I started with 1/4 egg yolk and increased slowly together with adding inositol in form of orange juice :thumbsup:

    Back in the day of extreme sal intolerance I used to bathe in sodium bicarbonate. :eek:
     
  5. outdamnspot

    outdamnspot Senior Member

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    @Gondwanaland do you find you have to be careful with nuts? Was doing a little better, then crashed horribly today. The only difference was eating mixed nuts before bed last night.
     
  6. Gondwanaland

    Gondwanaland Senior Member

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    I haven't eaten nuts or seeds since last December, except for the occasional Waldorf salad with a few pecan crumbs. So the answer is yes.

    I used to be very sensitive to oxalates, but since eliminating the omega 6 sources I have no issues anymore.

    ETA -- Omega 3 is recommended to alleviate both salicylate and oxalate issues.
     
  7. outdamnspot

    outdamnspot Senior Member

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    I've paired my diet back completely and am still having issues. Recently, I cut out spinach/kale, avocado and honey (I'm on keto).

    Now, all I eat is fresh salad, meat/fish/chicken, eggs, peanut butter. I also have unsweetened almond milk with oil (canola or Olive oil) to fill me up.

    The crashes seem random, so I feel like a food is triggering it. Is there any chance it could be canola oil? It says it has no preservatives. But I did feel better on the days I had olive oil instead, coincidentally or not. It's just expensive so my mom tends to buy less.
     
  8. Gondwanaland

    Gondwanaland Senior Member

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    I don't consider that food :eek:
    There you go ;)

    As I posted before, omega 6 (canola oil!) will make things much worse.
     
    Mrs.Blue likes this.
  9. outdamnspot

    outdamnspot Senior Member

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    Are you able to tolerate olive oil? Also do you tend to find it can take a few days for things to settle down after a negative food reaction? I was (unwisely) consuming the canola oil for about a week; I cut it out yesterday and woke up feeling less 'poisoned', but fatigue is still bad and lower than baseline.
     
  10. alex3619

    alex3619 Senior Member

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    Canola oil has a fair bit of trans fat, unless they have worked to remove or prevent it (there might be some that do this) but extra virgin olive oil, with similar monunsaturated fat status, does not have this trans fat, and is high in antioxidants. I am very salicylate sensitive, but much less now. I suspect continuing with extra virgin olive oil over many years has helped.

    Omega 3 can help a little, as can very tiny doses of evening primrose oil, but higher doses might hurt.

    This used to be my pet topic, I investigated it for many years, but I have forgotten nearly all of it. I was on many different types of salicylate control diets, none were very effective. Eventually I moved to having regular controlled doses of salicylates, typically lowish rather than low, as a super low salicylate diet kept resulting in my have extreme reactions when I did come into contact with them.

    These days I can usually tolerate even very spicy food. Sometimes I get skin peeling and irritation common with essentially fatty acid deficiency, in which case I eat Brazil nuts for a while. They are high in omega 6 and selenium. NEVER eat rancid nuts though. Check each one before you put it in your mouth. The taste should make that clear, but its best if you throw it before ever letting it into your mouth.

    We need more polyunsaturated fats than regular people, but with ME its bad to take too many. So its a matter of finding a balance that works for you. Its not a simple deficiency problem.
     
  11. alex3619

    alex3619 Senior Member

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    On a separate topic but still salicylate related, Ron Davis reports that severe ME patients have nutritional metal deficiency, and that includes selenium. The desaturase enzymes (D5D, D6D), the final target in salicylate attack, are regulated by glutathione, and very sensitive to even slight deficiency in some metals, including I think (and I have not double checked this so don't presume I am right) magnesium and zinc. If selenium is low then this will impact reduced glutathione status. Folate issues might also be implicated. It will be interesting to watch where this research goes.
     
  12. outdamnspot

    outdamnspot Senior Member

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    @alex3619 if I remembered correctly, you have a science background? Do you think it's plausible that someone who's severe (i.e. crashes from smells, foods etc.) could have an issue with plastic? The only other 'bad' thing I could think I've been doing -- while trying to puzzle out my decline lately -- has been drinking out of plastic water bottles. Since I'm bedbound and also require a lot of water, I have 4-5 plastic bottles I keep filled, and which are probably around 4-8+ weeks old. My water/mouth often have a 'plastic' taste too, so I wonder if this could be an issue, though wasn't to what degree. A google search mentioned the elements in plastic bottles can be 'endocrine-disrupting', though I wasn't sure how much truth there is to that; then again, I can't rule anything out when it comes to severe CFS.
     
  13. alex3619

    alex3619 Senior Member

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    Hi @outdamnspot I have a background in IT and biochemistry, but a lot of this is science on the fringe ... not proven wrong, some evidence its right, but not proven right either. So yes, its possible, there are often volatile compounds in plastic. However it might be the case, and vary product by product, that plastic used for beverage might be a better quality. PVC pipes have been implicated in endocrine issues, but I have not kept up with the research.

    I used to be able to taste and smell paint on anything that had been near paint, such as cutlery or drinking glasses. Nobody believed me. When everywhere transitioned to water based paints this went away ... I only had an issue with oil based paints.

    Its entirely possible its due to plastic, but the odds are its something else, and possibly something else you are not even aware of. For example, how close are you to a main road?

    There is so much we do not know about ME and CFS. I suspect there are many things we cannot handle. I cannot handle many drugs, wheat, and sometimes salicylate rich foods, though I am close to beating those last two, I hope. The drugs are potentially easier to explain, but there is little research into this. Salicylates are explained. Wheat is probably not gluten. Drugs involve activation and detox pathways, plus sensitivity to drug action.

    If plastic is the issue the key words to search might be improved by adding volatile organic compounds.
     
  14. outdamnspot

    outdamnspot Senior Member

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    @alex3619 thanks for the reply. I've thrown out the plastic bottles so will see how I fare. One final question: I saw in some old posts that you said only locally grown extra virgin olive oil should be consumed. I'm in Australia and the oil I bought was made in Spain, I believe. Could this be a problem?
     
  15. alex3619

    alex3619 Senior Member

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    Oh dear, @outdamnspot , YES. I had big issues with Moro, for example. There is far more extra virgin olive oil sold than is made, globally. Many sources are diluted, or contain old oil.

    In Australia I rely mostly on Cobram Estate (but hate the spout) and Red Island. Try those, then compare the taste to your Spanish one. I bet you can tell the difference. Local oils are far less likely to be altered by someone in the supply chain and its not necessarily the original manufacturers that do the altering. That means local to whatever country you are in, though in this case we are both in Australia.

    Extra virgin olive oil is also sensitive to heat and light.
     
  16. outdamnspot

    outdamnspot Senior Member

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    Ok! I'll pick up a local brand in that case. And one final, final question: when I was looking into fats, I read that olive oil is high in Omega 9 and relatively low in 3 and 6.

    I posted my diet above, which is primarily meat, chicken, salad at the moment. I was avoiding nuts out of fear of oxalates and salicylates (though if it turns out my current crash was caused by canola oil, I may cautiously try add nuts back in).

    Considering the only Omega 3 I might be getting would be from fish once or twice a week, do I have to worry about skewing my intake towards Omega 9 if I consume olive oil daily? I can't take supplements anymore so would be hesitant to try something like fish oil.
     
  17. alex3619

    alex3619 Senior Member

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    Omega-9 is a bit like polyunsaturated fat in terms of cellular deformability, but is hormone neutral. I think there are one or two enzymes it can effect, but is not itself a substrate for production of hormones, unlike omega-6 and omega-3. I have done well consuming mostly omega-9 for the last twenty years, but it wont stop relapses or produce any big improvement. Please do not forget that EVOO also contains phytoantioxidants, not many oils do although I think some cold pressed oils do, like avocado oil. Avocado oil, and macadamia oil, are other high omega-9 oils I think ... I am sure about macadamia, but have not looked at the profile for avocado in a long long time.

    You can also get short chain omega-3 from some plant foods, but if you have salicylate sensitivity its likely you will have trouble converting it to long chain omega-3. I might have been one of the first ME patients to really experiment with plant based omega-3, starting in 1993. It helped for a little while, then stopped working. Oh, darn ... where have I heard that story before? ;)

    Fish oil has to be fairly pure. It causes issues in even healthy people if they take too much and its not pure. Most fish oil with about 60% active ingredients is pretty good, though clinical trials often use 90% pure. So don't buy cheap supermarket brands unless you can see the ingredient percentage is high. Most of those only run at about 30% purity, which you can calculate by adding the EPO and DHA content per gram. However its not a panacea, and contrary to popular opinion is not actually anti-inflammatory on balance. There is an anti-inflammatory effect, but its because it substitutes for omega-6 in hormone synthesis, and produces less inflammatory hormones.

    PS Do be aware that we all react differently. Just because I tolerate EVOO well, if its at least OK quality, does not mean everyone will.
     
  18. outdamnspot

    outdamnspot Senior Member

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    Thanks again for your help.

    Btw @alex3619 what was the reaction when you tried the Moro olive oil, out of interest?
     
    Last edited: Sep 20, 2018 at 1:59 AM
  19. outdamnspot

    outdamnspot Senior Member

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    Well, strangely (or not) I refrained from consuming any of the olive oil today. Yesterday, I was completely disabled by fatigue, and today I feel a little better. So that means either I can't tolerate olive oil for some reason, or it's an issue with the particular imported brand.
     

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