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    • CommentAuthoreli5
    • CommentTimeJun 3rd 2017
     
    hi all,

    i'm very sad to be joining your group, but i appreciate beyond words this website and the wealth of information. i've been struggling for maybe 4 years or so now with significant skin issues, but only discovered salicylate sensitivity a week ago when i was desperately googling "red rash around the mouth." finally this combination of words led me to you. i've had this miserable redness around my mouth for maybe 6 months or so, just getting worse with time. i have been very "healthy" - i exercised every day, ate mostly fruits and vegetables, tons of olive oil. i loved my beautiful salad every night w/ vegetables, avocado, fresh spinach, hemp and pumpkin seeds, chicken in homemade salt-free taco seasoning (lots of spices!), and homemade salsa. dessert was a fruit smoothie or fresh pineapple. i also used an aloe-based sunscreen to which i even added olive oil b/c i thought it was good for my skin. i was addicted to yogi herbal tea, have a ton of it. i'm a physician, and addicted to caffeine - tons of coffee, starbucks lattes almost every day. (ok, maybe not so healthy ;). recently i started drinking diet coke again after years being off soda, thinking maybe the latte was my issue somehow. but my reactions to things were very strange. when i put olive oil straight around my lips, the rash would explode. my lips would burn and be so much worse after dinner. my other symptoms i didn't pay as much attention to b/c my lips were so miserable -- but despite being "thin", i always felt fat -- bloated, doughy, seriously feeling like i looked pregnant. recently i started getting numbness, usually in my arms. also headaches (never had these before), and swelling in my legs. and (sorry tmi!) but i've had vaginal/vulvar itching that drives me crazy. i've been told i have BV several times although no treatment ever works, and i've had no social life for a long time b/c i feel so bad (so no STD.) anyway, it was like a lightbulb went off when i read about salicylate sensitivity. finding out about the limited diet was depressing, to say the least. but just a few days on the limited diet, and my lips made HUGE improvement, amazing. and my other symptoms have improved as well. oh yeah - i was also taking whole food multivitamins, and other supplements w/ plant-based ingredients or artificial coloring.

    anyway... i haven't been able to see a naturopath yet (next wk), but i'm convinced i have this. my concern is, while my lips are better, they're not totally normal yet. i don't know if getting rid of so many salicylates all of a sudden made me more sensitive (as i've read can happen), and now i'm reacting to foods that before would have been fine (moderate salicylates.) OR, am i using something on my skin that i'm reacting to. i use free and clear shampoo and conditioner, as well as vanicream facial cleanser. according to them (i contacted them), these are salicylate-free. even a few sites i found say that the ingredients are salicylate free. but i find my lips are worse after i shower. so i have a few questions for you:

    1. has anyone found that they can't tolerate coconut-based ingredients? specifically, coco glucoside?
    2. i read a few threads about digestive enzymes (enzymatic digest gold/phenol gest) -- i've started these, so will see. but it sounds like these would only help w/ GI symptoms, not skin symptoms.
    3. it seems a lot of the threads are old... just wanted to ask if there are any updates, has anyone been able to go back to high salicylate foods?


    thank you so much for reading. as painful as this is, it's nice to have an answer... almost. i went running yesterday (usually have a latte or something first), and for the first time in a while, i didn't feel like i was going to pass out, and i could feel my legs. ;)

    one last word - as a physician, it really disappoints me how much the medical community does not know about this. i've seen an allergist and dermatologist, neither was able to help.

    thanks again!
    • CommentAuthoreli5
    • CommentTimeJun 3rd 2017
     
    oh, and one more question... does anyone know what "tandoori spice dry powder" is with a salicylate content of zero?? i know it couldn't be the traditional tandoori spice that is a mixture of wonderful spices all high :(.

    thank you!
    • CommentAuthorAvatar
    • CommentTimeJun 10th 2017 edited
     
    Hi Eli,

    So sorry about your symptoms, but I'm glad you've found us.

    1. Ingredients like coco glucoside are so highly refined that they are unlikely to contain any trace of allergenic substance from coconut--and many of these ingredients actually come from petroleum, even when they have "coco" in the name. FWIW, I use Free & Clear products without problem (except dry hair from the shampoo!).

    2. Enzymes will almost definitely help. I think they help with skin symptoms too, but ymmv.

    3. I've definitely improved a lot since the initial onset of symptoms (2013); I find I can tolerate a small amount of just about anything (while taking a ton of supplements), though I can still have severe symptoms if I overdo it.

    As for your continued skin issues--I'd recommend trying eliminating one medium-salicylate food at a time to see if it helps. You don't want your diet to get *too* restrictive. You could also start by eliminating other common (low-sal) allergens, like gluten, chocolate, dairy, or beef. Also, I for one take fexofenadine on top of the supplements.

    As it sounds like you may have systemic bacterial issues, taking probiotics may also help you--though I'd recommend to start out slow, as it sounds like you might have a systemic bacterial imbalance, and too much of a new strain may upset your system.

    I sometimes use a bacttracin zinc ointment around my lips when they get irritated, and it works well. Colloidal silver spray is also a sal-safe anti-microbial that may help you down under.

    Oh, and I assume you no longer use mint toothpaste, but if you do, stop immediately. Baking soda works fine.

    I'm sure your naturopath will have better advice. Let us know how it goes!

    Oh yeah, I too would love to know what this mythical salicylate-free tandoori spice powder is--I think most of us have given up on that one. My guess is that what they tested was just very old and stale ;)
    • CommentAuthorAvatar
    • CommentTimeJun 10th 2017
     
    PS - As a physician, I'm sure you can still help many of us out--I hope you'll contribute as you learn more!
    • CommentAuthormaple
    • CommentTimeJun 20th 2017
     
    I recently tried epsom salt baths and Phenol Gest to see if I would be able to eat any more salicylates than normal. The magnesium in the epsom salt baths seems to have helped my asthma a great deal, but the sulphate in it and the Phenol Gest don't seem to have performed any great miracles in allowing me to consume more salicylates without getting insomnia, red eyes, bleeding gums, itchy/blotchy skin or hives/sores, and joint pain/numbness. Normally I can get away with about .2-.3 mg of salicylates a day, so I was going to try eating one meal a day with about 2 mg salicylate with the Phenol Gest, but I always experience symptoms within a day with any foods I've tried so far. Perhaps my expectations were too high, but if it does help, the amount of extra salicylate I'd be able to eat would be so minimal as to not be worth the trouble I think. Might be only good in case of emergency when you have no safe foods to eat to help lessen the impact of it. I have aspirin-induced asthma, so I'm thinking maybe the sulphate and Phenol Gest aren't doing much because I possibly don't have a problem eliminating salicylates but just the whole reaction of them with omega-6 is terribly bad in me for some reason. Been avoiding omega-6 oil like the plague and taking fish oil since January, but I might just try upping the fish oil to see if that has a greater effect.

    One weird thing I did notice while taking the Phenol Gest and consuming the extra salicylates though was I started to crave chocolate like I used to before I went low-salicylate, and I started blacking out and falling whenever I would stand up, which is weird because I had totally forgotten I used to have that problem with standing up since I was a kid but suddenly hadn't had it since going low-salicylate. I looked it up and salicylates do cause low blood sugar, which probably explains why I was always craving sugary foods like chocolate before. Also, cocoa is one of the few things high in magnesium that doesn't have salicylates, so I wonder if I was gravitating to that specifically to try to get magnesium, which I seem to have been deficient in. I actually was only eating 1 serving of fruits and veggies a day before going low-salicylate because I knew they were a problem (thought it was all just oral allergy syndrome to some extreme degree though), and as bizarre as it sounds chocolate was probably making up a third of my calorie intake just because it was the one of the few safe things I knew I could eat.
    • CommentAuthorRita
    • CommentTimeJul 22nd 2017 edited
     
    Eli5, I've been able to return to a normal diet after almost dying of ss. You can find the steps I took under the READ ME FIRST thread. You're healthy diet was also a diet very high in salicylates. I would bet that the aloe based sunscreen threw you over the top. You mentioned symptoms of vaginal yeast infection...fruit can also be a culprit. Your lips are more sensitive after you shower.....could be the hair products absorbing into your skin, or any lotions, soaps, or makeup you are applying to your face right after you shower. If not, it could simply be a reaction to the heat of the water. Alot of us are sensitive to heat which causes us to break out in hives. Eli is Hebrew for my God, yes? Keep your spirits high knowing that with some hard work, you will be able to adapt your diet to work for you while still enjoying the foods you love, just not so much and not all at the same time. Keep us updated. Rita
  1.  
    Eli5,

    I too am sorry to hear of your sensitivities. Knowing what to eat and what not to eat is extremely difficult. I look at my sensitivities a bit differently from some on this site; I look at myself as being salicylate sensitive because salicylates activate TRPV1 pain/inflammation channels. One who is sensitive to TRPV1 irritants is often sensitive to TRPA1 irritants. When those those channels (TRPA1 & TRPV1) are activated at the same time, there is a 202% increase in response. I noted that you use olive oil a lot and I know that olive oil activates TRPA1. You also eat a lot of spices and many spices, especially those with "heat" activate TRPV1. You may be having that increased response because of the combination of foods. Actually, you may have become sensitive because of the frequency of which you ate TRPA1/TRPV1 irritants. Constant irritation can cause sensitization. I had to eliminate seasonings except for salt. I am careful about the oils that I use. Carbonation activates TRPA1. With salads, I can eat romaine and iceberg lettuce, but not arugula or spring mix. Arugula belongs to the brassica family and I can't remember, but that family of foods activate either TRPA1 or TRPV1. S

    I know, something else to research, ugh. You can do a search on this salicylate sensitivity site for "TRP" and read more of what I and others have written. Hope this sparks and interest and helps in some way. Avoiding these foods should also help with the vaginal burning. Someone on this site has put together a great list of foods and spices that activate TRPs. Not on that list are bananas and pears which contain amyl acetate, a TRPA1 irritant. My mouth burned every day for 8 1/2 years until I figured all of this out. My thoughts on mint -- chewing minty gum was my salvation. Mint activates a channel called TRPM8 a cooling channel. TRPM8 is known to counteract TRPV1, a heat channel. See if it helps you as it did me.

    I know,it's complex. I've been told that less than 5% of MDs have even heard of a TRP channel. The science is relatively new (20 yrs ago the first TRP pain channel was discovered), but a scientist who made the discovery of TRPV1 was a major contender for the Nobel Prize in medicine in 2016.. It's a big deal.
  2.  
    One more thing. I do fine with coffee as long as there are no spices added. There a no indications that coffee activates TRPA1 or TRPV1 in humans. I am also sensitive to bitter so adding milk or cream helps me.