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    • CommentAuthorSCGoodwin
    • CommentTimeSep 18th 2012
     
    Hi everyone,

    Am new to this site and excited to learn so much about crazy Samter's symptoms, and am trying to understand them all. My doctors in Boston have actualy surprised me by working together as a team, and my main allergist seems as frustrated as I am about how awful all the treatments are. One of the most helpful things I've learned is that I absolutely CANNOT have even ONE SIP of red wine. It kicks my asthma into overdrive within a couple of minutes. At first I thought this must be my own craziness, but it turns out to be pretty common with Samter's people.

    The most helpful website I've found is pretty new, and taught me a lot: aerd.partners.org

    Hoping for more help (the salicylate-free diets seem too hard to even attempt at this point!),

    SC
    • CommentAuthorJtoz54
    • CommentTimeSep 19th 2012
     
    Dear SC, Many years ago my Allergy Dr. told me that I was allergic to aspirin and he told me to avoid wine. That sounds easy enough. But 30 yrs later I found out that my lifetime of Asthma, Arthritis, Migraines, Dry eyes and many other symptoms could have been avoided if I had known to also go off all the high and very high sals in foods.

    We all have different symptoms from salicylates. It just seems strange that anyone with Nasal polyps and Asthma need to be in a separate category called Sampters Triad. So what if someone is told that they are allergic to aspirin and they have asthma but they dont have nasal polyps. What category does that put them in ?

    I noticed that you said sal-free diets are too hard to attempt. First of all, I hope you never try a sal-free diet. You should only try to avoid sals that are high and very high at first. You should always continue to eat the foods that are low in sals so you dont become hypersensitive to them.

    I noticed on the site you mentioned above that there are usually other symptoms associated with Sampters like headache, dizziness, nausea, overall unwell feeling etc. These are also typical symptoms of Salicylate Intolerance.

    I know I,m coming across as exasperated but 5 yrs ago when I got off all high sals most of my symptoms went away within a week. My Dr was in denial and I told him since I am allergic to aspirin it was only logical that if I ate enough foods that were high in sals It would almost add up to taking an aspirin. Check out the rest of my story at sickfromsalicylates.com

    I wish you luck but I think the day is going to come where you might have to avoid foods high in sals, Joan
    • CommentAuthorSts70004
    • CommentTimeDec 12th 2012
     
    Just a correction, caffeine does not contain salicylates. It's not even a phenol. It's an alkaloid. It is comprised of CHNO, no benzene ring. You may react I it because it's a stimulant which will stress your body. So although avoiding is probably a good idea (for everyone, not just sal people) it is not broken down through the PST Patheays, it's 100% excreted through urine.
  1.  
    I am new to this forum and am amazed that I may have actually been able to find out what's going on in my body to produce what seems to be a major autoimmune response. I am allergic to aspirin and burlap which I have known throughout my life. I was put on a rather strong course of antibiotics about 3 months ago and ever since it seems my sensitivity to SAL has increased drastically. After taking the antibiotics, I have had a severe nasal swelling and now have blistering on my skin from a tea tree shampoo. I really would like to know if antibiotics can affect the sensitivity and if it does do I have a chance of it returning back to my previous level of tolerance. I am going to immediately amend my life to avoid foods and products but I hope that it gets better without having constant reactions to things that previously didnt really seem to bother me.
    • CommentAuthorJtoz54
    • CommentTimeJan 25th 2013
     
    Dear Sts, I used to drink coffee everyday. Usually decaf. And I had a headache almost everyday... When I gave it up they went away... When I tried it again I got a headache within 20 min.

    I thought maybe it was the chemicals in the decaf process, but then I got a headache when trying regular coffee. Could it be pesticides? Maybe I should try the organic coffee. ???? JOan
    • CommentAuthorSts70004
    • CommentTimeJan 26th 2013
     
    Joan, I read somewhere early on that it was the decaffination process that either removed or destroyed the salicylates in coffee. So if you react to several brands of decaf coffee, you may be sensitive to whatever they use, and in that case, trying normal coffee would be salicylates. If you mean organic decaf, it depends I guess on if your allergic to the decaffination chemical, pesticides, or just plain allergic to coffee. We don't drink coffee so I don't really know much about it.
    • CommentAuthorlindyd
    • CommentTimeJan 27th 2013
     
    Look for coffee decaffienated by the "swiss water method" Joan - it does not use solvents :o)
    x
    • CommentAuthorJtoz54
    • CommentTimeJan 27th 2013
     
    Ok thanks.
  2.  
    I'm a celiac, can' t tolerate vegetables, only pureed carrots. I'd like to know about butternut squash, very reccommended on a healing celiac diet. Each time I eat it (peeled, boiled and pureed) I get a reaction. I can't even begin to think of making steps forward to spinach or cucumber...
    • CommentAuthorJtoz54
    • CommentTimeMar 15th 2013
     
    I'm assuming that you are salicylate intolerant and thats why youre here. Why are you eating vegetables high in sals like carrots. Can you eat cabbage, string beans, peas, brussel sprouts, lettuce, celery and some cauliflower(moderate).

    I will never make a step towards eating the high sal foods but thats ok. I've made my peace with it and I feel good. Whatever healthy foods I can eat I do eat like papaya and bananas and beans and the above veggies. When I make a big pot of spaghetti and meatballs for my husband I dont even taste one drop. It smells so good but then I remember too many days of migraines, dizziness and vomiting and I sit down with my chicken and quinoa and a veggie and feel good. I am ss, lactose int. and non-celiac gluten int. Good luck, Joan
    • CommentAuthorKiwi
    • CommentTimeJun 4th 2013
     
    I must be honest when I say that I haven't read all of these posts except for MoralAnimal's at the beginning. I happened upon this thread when I decided to come back here to discuss a possible reason for SS. Due to recent problems I've been having, I am convinced that it has a lot to do with low stomach acid, something I know I suffer from but which my doctors refuse to recognize.

    I have been taking betaine HCl for a few years now, but like many here, the expense of so many supplements leaves me gasping for breath, so over the last few months I tried to cut back on the amount of HCl I was taking. The trouble was that at the same time I was eating stuff that I shouldn't have been and put my bowel cramping down to that.

    A wee while ago, I corrected my diet, but still had the bowel cramping and finally the penny dropped! So I upped my dose of HCl again and hey presto, bowel cramping has gone.

    When I started out researching low stomach acid, one of the facts I uncovered was that low stomach acid leads to food intolerances and I was hit by a heck of a lot of them about 4 years ago. Prior to that I'd been on proton pump inhibitors for years and of course had various doses of antibiotics. In the meantime I am increasing my HCl and once I get "balanced" again, I will go back to trying probiotics, something I started a few weeks ago but which I though gave me cramping.

    Just another puzzle to solve!
    • CommentAuthorJtoz54
    • CommentTimeJun 6th 2013
     
    Hi Kiwi, that is very interesting. I've been saying for years that I suspect that I have low acid cause I belch after everything I eat. I just havent had the courage to try HCI. Maybe I will now. Joan
    • CommentAuthorKiwi
    • CommentTimeJun 8th 2013 edited
     
    Hi Joan

    Having low stomach acid can lead to all kinds of problems, a poorly functioning gallbladder for one which is now another problem I've just discovered I have. For ages I have eaten low fat meals and have only recently increased my fat intake to 10 fat grams at each meal plus increasing my HCl intake. The GB needs that stomach acid to work plus 10 fat grams. However, once I got the HCl and fat content right, my GB went crazy with pain, so now I know that I was too low in stomach acid and now have another problem to deal with. Don't quite know how to fix an inflamed GB because I don't think I have gallstones. Am seeing my GP tomorrow. And yes, Joan, I always had terrible belching which has now become a lot worse.
    • CommentAuthorAiwen Li
    • CommentTimeJul 14th 2013
     
    Anyone noticed the importance of having enough salt in the diet? I am a severe SS, but also found out recently that I have been suffering from adrenal fatigue and experiencing heavy sodium loss. A high-salt diet in general helps me, but a high potassium diet does a lot of harm, e.g., banana (very low in salicylate) is a no-no for me. I also remembered some folks here mentioned that a glass of water with some baking soda in it helps them feel better, so I think maybe some of you folks might be having the same problem. If you do or you want to check it out, I can recommend an excellent book by James L. Wilson, "Adrenal Fatigue The 21st Century Stress Syndrome". Hope you all are doing reasonably well. I am trying everyday to deal with SS and many other problems (chemical sensitivity etc etc), and I am still hoping for a miracle that someday I might be NORMAL again.
    • CommentAuthorAvatar
    • CommentTimeJul 27th 2013
     
    Hi Aiwen,

    My bloodwork has shown low sodium levels for a while. I'm also low in chloride, so salt is just what the doctor ordered--literally. She's told me to eat as much salt as I can stand. I find that having more salt definitely helps me NOT retain a lot of water. Take that, conventional wisdom!

    Potassium is an important electrolyte, so I wouldn't call it harmful, but it may be a good idea to have sodium whenever you have potassium. I actually sprinkle salt on bananas when I eat them.

    The bicarbonate actually works in ways that are not specific to sodium, but I agree that it's possible others here would benefit from more salt. And yeah, I agree the adrenals are a very important part of the equation. I think a number of us here have recognized that our symptoms are better when our stress levels are lower.

    I too look forward to feeling normal again--oh, the pleasure of eating whatever you feel like eating without worrying about how terrible you might feel afterward!
  3.  
    I am experimenting with taurine supplements to help with my digestion.. hoping it helps with the burps / pain around my liver/gallbladder which shows nothing on scans ... http://drlwilson.com/Articles/TAURINE.HTM
    • CommentAuthorAiwen Li
    • CommentTimeAug 1st 2013
     
    Hi Avatar: I replied to you, but for some reason, the site failed to post my message. Very strange.
    • CommentAuthorAiwen Li
    • CommentTimeAug 1st 2013
     
    Hi, Avatar: I am reposting here. Hope it works this time. Thanks

    Thanks for the message. Interestingly, my bloodwork looks normal re. Na (sodium), K (potassium), and Cl (chloride). But what got my attention was the off-the-chart Na level in my hair test result. For me, the range of of Na in hair is 10-50, but my result was 148, and when I was asking the specialist who ordered my test, he didn't seem concerned at all. All he was looking for was heavy metal level. He thought I was poisoned by heavy metals. When I found out on my own that my extremely high Na level in my hair was indicating that I was losing lots of Na, I went to my primary care physician, but he didn't seem interested at all. He said my blood lab results were normal. So I have been on my own finding out how much salt to take everyday, and how to balance the intake of Na and K (I don't think I can put salt on banana :-)). I use kelp powder and sea salt to make sure I get enough Na, also K. So far, as long as I am VERY careful with what I eat, I am relatively okay. Of course, when I eat something I should not, my body is very quick to punish me without mercy.

    Hope you are doing well, and again glad to hear from someone that has similar experience with high sodium intake.
    • CommentAuthornanciswell
    • CommentTimeAug 1st 2013 edited
     
    Mmm? Aiwen.. I am thinking here how there is a way of chelating where the way to tell if you need to do it is by looking at mineral levels/ transport.. So if your minerals are out of balance that indicated poor metabolism which shows how metals have deranged the system.. The protocal called frequent
    dose chelation.. His name is Andrew Cutler and his book http://www.noamalgam.com/hairtestbook.html
    • CommentAuthorAvatar
    • CommentTimeSep 12th 2013
     
    I apologize for not responding earlier. Aiwen, if you're still reading, I'm interested to know why you think that high Na in hair and normal in blood means that you need more . . .

    I'm also interested to hear that you can tolerate kelp; I'd had bad experiences with dulse and nori, but I would be willing to give kelp a go; kelp is so nutritious it would be great to have it as part of my diet.
  4.  
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    • CommentAuthorSharonyfs
    • CommentTimeOct 24th 2013
     
    Hi everyone, please please help, I have been suffering for about 6 years now with severe stomach cramps, gas followed by runs, fatigue and tinnitus, the fatigue and tinnitus are constant but cramps and runs I only get 20 mins after eating or drinking the following foods, red wine, tea, coffee, coke, tomato sauces, grapes, raisins, nuts, liquorice, blackberries,raspberries,strawberries, olives, olive oil, and certain medications, does this sound like salycilate sensitivity to anyone.
    • CommentAuthorJtoz54
    • CommentTimeOct 24th 2013
     
    Hi Sharon, you could be the poster child for ss. All the foods you mentioned are very high in sal. I have no doubt that the tinnitus and fatigue are from high sals. Is it possible that you are eating gluten along with those foods. Some italian bread and butter with your wine, a cookie with your tea, some pasta with the tomato sauce ? You might have some gluten intolerance going on along with the ss.
    Giving up moderate to high sals got rid of my migraines, arthritis, asthma, dry eyes, swollen glands, pinchy painful clogged ears, and foggy headed feeling. But I had to give up gluten (wheat, barley and rye) to get rid of gas and bloating. If you werent eating a diet so high in sals I would say try avoiding gluten first but since you are eating so many high sals I would try one week of avoiding all moderate to very high sals and see how you feel. See which symptoms subside. Good Luck, Joan
    • CommentAuthormariel
    • CommentTimeOct 25th 2013
     
    Hi
    I have been following a low salicylate diet for the last 6 weeks and my cough variant asthma has completely disappeared. (I had a severe reaction to aspirin, and when I made the connection I thought I would try the diet.)
    But I have a question about the list of low sal foods. The original research shows levels per 100g.
    e.g.100g spinach 0.58
    100g carrots 0.23
    100g cinnamon 15.2
    100g plums 0.21
    100g of spinach is a lot of spinach compared to the amount of carrots you get for 100g.
    While cinnamon is very high you certainly wouldn't have anywhere near 100g of cinnamon, so does anyone here use a pinch of cinnamon (or a pinch of herbs) because it wouldn't add that much salicylate to a recipe?
    • CommentAuthorJtoz54
    • CommentTimeOct 26th 2013
     
    My daughter in law made a pumpkin bread with a pinch of cinnamon and nutmeg and I felt very sick after I ate a piece. I make it a rule to stay clear of cinnamon, nutmeg, ginger, allspice, oregano, basil and pepprika
    • CommentAuthornanciswell
    • CommentTimeOct 27th 2013
     
    Sharon .. those foods sound like they could be high in histamine .. You can then possibly find an antihistamine that would help with the reactions.. Some take ketotifen.. another popular one is called cromolyn sodium.
    • CommentAuthorlauramorgan
    • CommentTimeNov 19th 2013 edited
     
    Don't know much about it, but I think salicylate sensitivity can be used for extreme pain during dental implant.
    • CommentAuthorLisao
    • CommentTimeFeb 11th 2014
     
    Mariel - all herbs and spices are very high in salicylates. In particular anything in concentrated form. Stone fruits are all high to very high, spinach is high. Carrots are moderate. Even small amounts in the very high category can have an adverse effect on some people.
    • CommentAuthormanich
    • CommentTimeFeb 11th 2014
     
    Free at last!

    I have started enjoying beer, almonds, broccoli, etc. again. The secret: Apple cider vinegar. I knew there was a magic tonic out there somewhere. I don't know if it will help with everyone's metabolism, but it has lessened my flushing and chills by 80%. Just one table spoon in a glass of water before meals. Might need to sweeten. Good luck.
    • CommentAuthorJtoz54
    • CommentTimeFeb 12th 2014
     
    Hi I just have to caution people. What sounds like a magic potion was what made me hit bottom. In addition to eating many foods high in sals ( before I knew I was ss) I was putting apple cider vinegar in my water every day because I read it was good for arthritis. I t was in fact making my arthritis worse. And my asthma and my migraines and my dry bloodshot eyes. When I gave up all moderate to very high foods I got rid of all of my symptoms. So like you said it isn't good for everyone but I'm happy it helped you. Joan
    • CommentAuthorPepper
    • CommentTimeFeb 26th 2014
     
    HI everyone. I'm in Seattle, am 69 and have been battling fibromyalgia/CFS most of my life, pain in my neck and arms. I also have Cerebral Dystonia inherited from my Mother, so get botox shots in my back and neck. Over the last 2 years I have been seeing lots of doctors who could not figure out what was wrong with me as I developed severe back pain spreading around my ribs, hip/glut pain, neck stiffness/pain in neck and up into head behind ears, shoulder, arm, leg pains, restless leg syndrome. My neurologist had tried every drug he could think of, IVIG's, and was ready to begin thinking of brain surgery. I couldn't begin to wrap my head around that, so I went back to what a naturopath told me 2 years ago - that I had a salicylate/dye sensitivity. She had begun me on a diet that was totally wrong and I was nauseated for 3 months, lost 25 lbs and wanted to die. So gradually I began adding food back into my diet and thought I was fine - not relating the pain to the salicylate sensitivity. Then I had a moment - maybe I should check out the salicylate low diet again. I did about 2 weeks ago, and have had a terrible time trying to get enough food into me that doesn't create shaking, pain, sleeplessness, and depression along with headaches, stiff neck and ear pain. But I began to see some improvement, until I got stupid and tried some things like Chocolate ice cream, or eating a steak in a high-end restaurant. I pay for these indiscretions for days. I checked all my drugs (about 6 of them) and discarded all but 2 that were dye free. I stopped taking Tylenol PM because of the dyes, aspirin, and any other pain pill as they all contain dyes. While working as a medical transcriptionist at Scripps Clinic in La Jolla, (San Diego) in 1988- 1990 I was checked for magnesium and found to be deficient and my rheumatologist began me on enough magnesium to cause diarrhea. He checked all his patients and found most were magnesium deficient (but he left his practice and went into research - guess he was at a loss as to why we were magnesium deficient). I felt some better, but later after I gave up on these doctors and moved myself and my 3 sons to Hawaii in desperation hoping I would feel better swimming more, I found out I had a candida problem. I began a candida diet, got rid of almalgam fillings in my teeth (I was running a low grade fever all the time until did this and it immediately went away), but for the years following I still had so much pain. Now after 2 neck discectomies, botox, deep injections in my neck and back (that didn't help) and tons of vitamins, drugs, you name it - I think I have finally hit on what will help. I appreciate all the information, especially about vitamins as I had given up on finding one. I find the Australian posts about menus helpful, but again has too many vegetables right now. I did make a "no tomato sauce" but had to substitute Golden Delicious Apples for garlic and other vegetables - but it was good! I have been able to take Magnesium Citrate without a problem. But at my age, I think I need the B vitamins, and many others too. Thanks to all - Pepper
  5.  
    Joan did you ever find a cause or solution to the dry mouth/burning tongue? My daughter can't speak, but when she does have a sals reaction, we can tell.
    Since we've started doing the detox baths and low-sals diet, she seems to be much more thirsty and occasionally her lips are very red. (Detox bath is 1 cup Epsom Salts and 1 cup baking soda).

    Pepper - Interesting you mention Magnesium deficiency ... Magnesium in the Epsom salts is supposed to help detox the sals/benz/phenols.

    Her skin seems very dry afterwards. We are looking for a lotion that we could use to sooth the dry skin, but most have something in them (as I'm sure you are all aware).
    thanks,
    Will
    • CommentAuthorJtoz54
    • CommentTimeMar 10th 2014
     
    Hi Will, I'm sure you worked your way up to it but 1 cup of epsom salt would be a little too much for me. I only use a few spoonfuls. I think I also read that you should rinse off in a cool shower after taking a detox bath. Maybe too much salt is drying her mouth out.

    My red burning lips and tongue were caused by a birch allergy that was cross reactive to foods like bananas, celery, apples, pears, sunflower seeds and sunflower butter. Foods that were low sal which I ate everyday. Look up OAS (oral allergy syndrome) for the whole list of foods that could be causing it.

    I also get a very dry mouth instantly when driving in a car because of the benzene and petroleum fumes, even though I cant smell them.
    Eating too much sugar also gives me a dry mouth. Good luck,Joan
    • CommentAuthordannybex
    • CommentTimeOct 22nd 2014
     
    Hello friends,

    Please check out the new article on Vesper's Saliciylate website written by Janet Stone -- a woman who was severely disabled by salicylate and histamine intolerance. She talks about the importance of histidine in relieving the problem. I haven't tried it, but it seems to have worked well for Vesper and others, and Ms. Stone.

    Here's the link:

    http://salicylate.me/2014/10/21/guest-post-janet-stone-discusses-histidine/

    If you have any questions you can post a comment and I'm assuming Janet will answer it over there.