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    • CommentAuthorMarie
    • CommentTimeApr 1st 2007
     
    Hi. I'm Marie. I'm currently 22, live in St. Paul, Minnesota, USA (next to Minneapolis, a much more interesting place), started having serious salicylate and amine sensitivities in January of 2006 and figured out what it was in September, and have been curious about everyone else - how old are you, when/how did you figure out you were salicylate sensitive, where do you live, what do you do, and in what setting do you live (with parents, significant other, roommates, alone, dorm, etc.)? You don't have to share if you don't want to, I'm just wondering how much we have in common and if maybe there's some additional common thing. Today I've been thinking about city drinking water, and if maybe that's contributing to health problems in chemically-sensitive folk. Maybe it's city air quality, or maybe it isn't at all.

    Currently I'm in my last semester of college, but will be going on to grad school in the fall. I live in a three-plex, which is a fancy word for an old house that's now three apartments, with my spouse Eric and two bachelor housemates. We'd been married about 6 months when I started getting sick, which I partly blame on him. His family is into seasoned food, and he persuaded me to stop being a vegetarian after about 6 years, so I started eating a lot of meat (which I overcook since meat still makes me nervous) that had a lot of pepper and Worcestershire sauce on it about 4 months beforehand. I too love Chinese food, and I started eating more of it when I took up with meat again. As near as I can remember, I've had trouble breathing after eating occasionally throughout my life, so it was probably just a matter of time. Eric googled "paprika allergy" and discovered that many people who react badly to it (the only common thing between several anaphylactic reactions) have a salicylate intolerance after an ER trip I had in early September, and since then things have gotten much better as I've changed my diet, but we're finding he needs to change his too because I've reacted to strawberry sherbet he ate (twice... oops) and his toothpaste.

    My mother is also curious if anyone else is on birth control, and she's convinced that it has something to do with the whole thing (and she's getting to be senile, so she keeps asking me about it every time she talks to me...).
    • CommentAuthorLeah
    • CommentTimeApr 2nd 2007
     
    Hey Marie,
    i don't think you'll find a 'cause' like the 'city water' or eating spicey foods. It might seem like you just got your sensitivy then, when you may have had it for a while and the different food just made it more obvious. Maybe you just need to accept that there is no easy way out of this, like discovering a 'cause' and fixing it.

    i live in Sydney, Australia, am 22 and still live with my parents and sister.

    and i don't think 'the pill' has anything to do with it, thats probably just something mothers say, she probably isn't really happy that u r on it, and wants a little grandchild.

    some sensitive ppl can have a problem with Nsaids tho. so maybe you should check with a doctor or something. If you are not reacting to 'the pill' tho, then it will be fine
    • CommentAuthorwt
    • CommentTimeApr 2nd 2007
     
    I live in TN in a single family dwelling in a more rural setting. Just say I'm older that you. I have been researching MCS, Salicylate amd glutamate sensitivity since 2005. I believe MCS came first triggered from exposure to propane fumes when I worked around it for a year. As far back as I can remember a first symptom, it was after I stopped working here around 1988.
    I had asthma like symptoms for years before ever being treated for "asthma" in 2001 with Astelin, Flonase, Pulmicort Albuteral Singular. I used to have a variety of symptoms which I blamed on side effects of these meds.
    I later firgured out I was reacting to MSG. After eliminating MSG I discovered the salicylate sensitivity. I believe your system can beome "overloaded" with chemicals and sensitivities develop and a person should vary their intake every day and the chemicals you come in contact with, such as shampoo, etc.

    Salicylates occurred naturally in almost all of the foods I preferred to eat - fruit, hot spicey food. I don't think I was always sensitive. I do think there is a connection between the chemically altered food products they use to process food and most of the ailments folks suffer frrom these days. It seems a lot of this might be traced back to processing of "fast foods"

    Flouride is not good for you. I use a PUR 3 stage water filter. Tap water gives me bad stomach pains.

    I not sure salicylate sensitivity can be fixed, i know my MSG sensitivity is improved and I can now tolerate "small" amounts with minimal side effects.

    It's good that you are thinking about this. I have given it a lot of thought and I think there is a connection.
    • CommentAuthorRita
    • CommentTimeApr 2nd 2007
     
    Hi Y'all, as you know my name is Rita. I'm from S. California. I'm fortygazzillion years old. I believe I've always been salicylate sensitive. Looking back I can see it all creeping up on me....the difficulty breathing after eating tomato sauce, the easy bruising, dry eyes, nausea, bloody noses, then the headaches after eating strawberries.

    But it was the Naproxen (high dose aspirin) and Advil (aspirin) that put me over the top after I injured my back. The daily dose of 98% salicylic acid in my acne pads wasn't helping either. So I became very ill and didn't know why. You name all the symptoms of ss. I had them. After much research, I concluded that salicylates were my problem. I went on the low sal diet and am feeling better, sometimes even normal.
    • CommentAuthorRita
    • CommentTimeApr 2nd 2007
     
    Here is what my research has uncovered about salicylates. One dietician suggested that salicylate sensitivity is genetically passed down. She attributes the cause of the problem as being poor B6, B12 and/or folate conversion problems which in turn causes a build up of the amino acid cysteine. This acid can't be correctly metabolized by the digestive tract and causes trouble with the liver.
    • CommentAuthorRita
    • CommentTimeApr 3rd 2007
     
    My further research has revealed that poor B6, B12 absorption can be caused by several things including a deficiency in pancreatic enzymes, low hydrocloric acid, low intrinsic factor output, and calcium deficiency which is needed to process B12. Salicylates can damage the stomach lining which produces intrinsic factor causing poor B12 absorption.

    There might also be a link between salicylates and candida. Salicylates are hormones which can act as a mild antibiotic which can throw off the balance of good to bad intestinal bacteria. The symptoms of ss and candida are strickingly similar. This could be why you have those other wierd symptoms like hives. Time to give up the sugar! But only for a while.
    • CommentAuthorBeth
    • CommentTimeApr 3rd 2007
     
    Marie, thanks for starting this thread - I think it's great for everyone to get introduced and learn a little bit about each other - it helps us all feel a bit less isolated and alone.

    So, here goes…My name is Beth (obviously) ;) I am married and in my mid-20’s and for the next few years I will be living in an apartment in Prague (in the Czech Republic) After that who knows where  I am an American citizen and spent the last few years living near Seattle but grew up in Scottsdale, Arizona.
    I currently work as a sales recruiter/head hunter and work a second job teaching English as a foreign language to high school students here in Prague. As a side business my husband and I are currently investing in and helping others invest in international real estate. My life is pretty busy at the moment and it doesn’t look like it will slow down any time soon.
    I have always been a more “sensitive” person. As a baby I developed bad ear aches and ear infections which the doctors decided where caused by a milk allergy (for years I went milk has caused me problems in larger doses but since going off salicylates I’ve noticed milk hasn’t been a problem any more). As a child I was prone to strep throat and always had a bit of a weaker immune system. But, the real problems started when I hit puberty. Around that time I developed severe hives which no doctor could really find the cause of. They were constant, all over my body, and only one medication actually helped relieve them – Zyrtec. Around this time in my life I also started having severe nasal problems – constantly congested and very prone to sinus infections. Headaches and breathing problems came in college.
    Now, I know that most of my symptoms were related to salicylates and amines and I’m beginning to feel that other chemicals may also be a problem for me as well. I’ve always been fairly health conscious but I’m just now realizing that just because something is healthy doesn’t mean it’s healthy for me.
    I have definitely noticed that the move to Prague has been hard on my health – I know that things like car exhaust, smoke, perfume, and chemicals used in construction sites and things like that really cause problems for me and those things are harder to avoid living in a big city with lots of construction and using public transportation. But, my theory at this point in my life is that I control the things that I can control and the other things I try to avoid as much as possible and when I can’t avoid them – well, then I have a reaction and such is life. I don’t want to live my life trapped in my own home – sometimes (at least for me at this point in my life) the reaction is worth the experience. For now I just want to get to the place where those reactions are as irregular as possible. I don’t ever want to go back to living with constant, daily, continuous symptoms.

    Marie, as to your question about birth control – I have wondered this as well. I asked my pharmacist about it and he said that the birth control that I take doesn’t contain any salicylate (or any form of salicylate). You may want to ask your pharmacist to make sure but most likely your birth control isn’t the problem.

    Health to you and yours –
    Beth
    • CommentAuthorTEDDY
    • CommentTimeApr 3rd 2007
     
    Hi Marie (and all)

    Nice to meet you. It is interesting that you started this thread as maybe reading through the comments from others we might notice similarities and perhaps find out a bit more about condition.

    I am Lesley (alias Teddy on the forum). I am 48 years young and have recently been diagnosed as salicylate, benzoate and MSG intolerant, so I am very new to learning about salicylate issues and the others. I cannot tolerate MSG and I was interested to hear that you are the same as me on that score and I adore chinese food but alas no more for me as it truly makes me so ill I end up in bed for days because I have simply eaten a chinese meal. I am prepared to give them up as the effect they have on me is not worth being so ill over. Although like Beth I will never say never and if I feel like it someday I might be brave and have one but I know it isn't worth the pain.

    I live in a detached home in a town with my grown up children, a daughter 25 and a son of 22. My husband keeps good health and along with my very old 15 year old dog called Teddy they are the two healthiest in the household. We have large gardens and at this time of year I have to avoid going out when the grass is being cut as that also makes me unwell.

    I have recently just had the results of hospital patch testing and they have diagnosed me as allergic to sodium metabisulphite which is a preservative no 224 I think. So even more things for me to avoid. At the moment I am unsure as to what I can and cannot eat and until I get my dietician appointment in May I am just trying to be careful to remain relatively healthy. The problem I am facing at the moment as I was learning about salycilates and what I can and cannot have seems to cross over into the new allergy where I will be allowed even less. I suppose until I get my appointment I dont really know what I can or cannot have!!!

    I also suffer from type 1 latex allergy which causes me to go into anaphylactic shock when I come into contact with latex and unfortunately for me this is sometimes undetectable and I cannot help this happening although I do my upmost to avoid where I possibly can. I lost 5 front healthy teeth due to this prior to the diagnosis. 7 years on I am still waiting on these teeth being replaced as till now there has not been a latex free clinic in which to make them. I attend a hospital in Glasgow for this but still have not had them replaced. Hope to be done this year!! Life at the moment with one thing and another is a bit of a struggle. My newest diagnosis is a problem as the sulphites are in my epipen of adrenalin for my latex allergy!!
    Take care everyone Nice to meet you all
    Teddy
    • CommentAuthorRebeccaB
    • CommentTimeApr 4th 2007
     
    Hi
    I'm Rebecca. I'm 18 and I grew up in a suburb of Boston and currently live in upstate New York/the boonies. I'm a freshman in college and live in a [tiny]double room in a dorm. My major is SpeechLanguage Pathology and my minor is French. I was diagnosed as SS in late January of 2007..because I went to an allergist to see what I could do about my allergy to vinegar.

    I think that I've been sensitive to salicylates for about thirteen years. I remember I missed most of kindergarten because I was sick all the time..and kingergarten was the first year of many public school hot lunches with questionable contents. People used to ( and to some extent, still do ) call me a picky eater. As far back as I can remember, I have avoided vinegar like the plauge. I don't know why, specifically, but it has always grossed me out. Earlier this year I was told that I'm allergic (not sensitive) to it.
    During my senior year of high school, I discovered sushi...and proceeded to eat a lot of it. That was a bad choice on my part, because sushi has at least three different kinds of vinegar in it.

    The SS comes in to fruits and sauces. I can't eat strawberries/berries in general without having breathing problems. I've never had aspirin before, and don't plan on ever having it. My mom decided over 20 years ago that children shouldn't be given aspirin before the age of 18. She did, however, force feed me pepto bismol on several occasions. If you look at the label, it's a big no-no for those who are ss.

    College has been different. Earlier this year, the manager of one of the dining halls proved to me that no one knows what goes into the food. I told him that I was allergic to vinegar, and he told me that they never use vinegar in the food. I asked him if they use any condiments(such as relish, ketchup, mustard, etc), and he said that they do. No one reads labels!! He basically told me that I should stick to salad...and only the salad that's not next to the chicken salad, because they use mayonnaise to make that. I know that if I tried, I could get my school to offer a nutritionally balanced varity of food..but I don't want to force that on everyone. The meals/food service here is messed up enough as it is.


    --
    About salicylate sensitivity being passed down:
    My family has a long history of having sensitive stomachs. Off the top of my head, I can think of three immediate family members and eight extended family members who have severe acid reflux. My mom is lactose intolerant (developed at 14) and my dad is allergic to shellfish. My grandmother on my mom's side is allergic to just about everything.

    The rise of allergies and food/chemical sensitivites is highly correlated with the number of parents who aren't breast feeding their children. Studies have shown that if a child is breastfed, they are less likely to develop allergies and sensitivities and are more likely to have a stronger immune system(and be less sick). Also, parents are placing their children in daycares are earlier and earlier ages, exposing them to more infections and diseases. This means that babies with weak immune systems are being introduced to more sicknesses than ever before. So if sensitivities are hereditary, one family's choice to not breast feed their child can result in a whole family of food/chemical sensitive people...
    and the numbers rise exponentially...
    • CommentAuthorTEDDY
    • CommentTimeApr 4th 2007
     
    Hi RebeccaB

    It was interesting reading your story. I was interested to hear you grew up in Boston as my daughter has just arranged to go on holiday to the US for the first time to Salem (I beleive near Boston) and she is really excited about it. She has been invited by a friend she used to work with as he married a girl from Salem and can't wait till August to go. I have never been to the US before and I hope to get there one day.

    I have never heard of anyone being allergic to vinegar and as you will know more than most it is in so many products not just the obvious ones. I am just new to the forum and I have learned so much from reading all the stories put on and nice to meet you.

    Teddy
    • CommentAuthorwt
    • CommentTimeApr 5th 2007 edited
     
    about ss being hereditary

    There are no known or reported allergies or sensitivities in my family as far back as I have knowledge.
    Other than the occasional juvenile infection I was very healthy until 1990 when I began a very gradual decline and
    eventually caught every cold, sore throat, bronchitis I came in contact with. My immune system became severely suppressed. In 2003 I discovered Co Q 10 and gradually I quit getting sick. The sensitivity symptoms were becoming more prominent however. In 2005 I finally made the connection with MSG and eventually SS.

    Maybe there are different reasons why we can become sensitive.
    • CommentAuthorTEDDY
    • CommentTimeApr 5th 2007
     
    Don't you think that it must be due to all the processed foods and additives, preservatives, pesticides, chemicals etc in foods and other products nowadays or it could be that we are just more aware of it as we live in different times now. Personally I think its down to the first point of all the additives etc and I also think that this is an epidemic or do they call it a pandemic waiting to happen. More and more people seem to be developing allergies and intolerances and sesnsitivity to so many things it makes you wonder why this is happening there must be a reason or reasons.
    • CommentAuthorRita
    • CommentTimeApr 5th 2007
     
    Les, I still believe those who would be most affected are those who are genetically predisposed, BUT I agree with you. Our society is so rush rush and so busy we barely even have time for eachother much less time to make a fresh, healthy dinner. Our maybe we are just lazy. Our maybe this is the only thing our generation knows. Hamburger Helper. Or maybe we believe what the commercials tell us....."You deserve a break today....at McDonald's" But perhaps we are the cannaries falling sick before everyone else. I have read that the fruit now being grown is genetically selected to have higher levels of salicylates. Salicylates are the hormones that plants produce to keep them from bacteria and fungus. This new generation of fruit have a longer shelf life. But they are shortening ours. I'm sorry. I don't mean to be pessimistic. Blame it on the salicylates! And don't forget.....it's all about the buck! People don't care what they put in our food as long as it puts money in their pockets.
    • CommentAuthorwt
    • CommentTimeApr 5th 2007
     
    Maybe it's genetics or maybe some of us have had a lot more time to get a lot more exposure to chemically altered vegetable products in our food.
    If manufacturers put the maximum allowable amount per serving of food enhancer in each product they make and you eat more than one serving at a time, say potato chips or soda usually contains 2 or more serving per small bag or bottle, you eat a bag and a bottle with two of your meals. I would think you would get an overdose of this enhancer. Then add the shampoo and conditioner, bath soap, toothpaste, hair spray, gels, etc
    can you begin to see how much of this enhancer you could come in contact with in just one day.

    For sure, it's all about the buck!
    • CommentAuthorIngs
    • CommentTimeApr 7th 2007
     
    Hi All,

    My name is Ingrid and I live in South Africa. I have a severe allergy to aspirin. It took me about a year to pin point the cause of the hives as there were always several contributing factors. It was a trip about seven months ago from the US when I took Advil and twenty minutes later, I was covered in red itchy hives - I then finally realised that aspirin is a big no no!

    As I read through these postings, I see a lot of similarities. I am on Zyrtec as a chronic medication and some days have to triple the dose...

    I have often wondered whether stress aggravates the condition. Has any one experienced this?

    Ingrid
    • CommentAuthorwt
    • CommentTimeApr 7th 2007
     
    Hi Ingrid

    This condition probably causes stress as its so frustrating trying to avoid SS triggers.

    Do you have other triggers beside aspirin?
    • CommentAuthorRita
    • CommentTimeApr 7th 2007
     
    South Africa, wow, were all over the map! But yes, for myself, stress definitly makes my condition worse. At one time, but only for a second, I thought could this all possibly be im my head.......because at certain times my husband would irritate me and my aches would worsen, my legs would become weaker....and all the professionals were asking, "Are you under alot of stress" they would even pull my husband aside and ask him the same thing. Then I would tell my husband, "I'm probably allergic to you!" But of course, after doing research, I learned that chemical hormornes are released when a person comes under stress and of course we are chemically imbalanced to begin with so you have all these hormones crashing into one another.
    • CommentAuthorIngs
    • CommentTimeApr 9th 2007
     
    Hi Wt,

    I've had reactions from: ibuprofen, advil, aspirin and cataflam. It is highly frustrating. I find that acidic food worsen the condition as well. I'm in a highly stressful job, so that doesn't help either. When I'm stressing, I'm bound to find a rash (very fine and clustered) on my legs and wrists.

    What baffles me is that I developed my allergy one day after I had a break-in at my apartment. I've often wondered whether my condition isn't psychological.

    Ingrid
    • CommentAuthorwt
    • CommentTimeApr 9th 2007
     
    Ings,
    I read somewhere that a "incident" or exposure can be all it takes to put your system into overload status where you become sensitive. Most all fruit has salicylates , some pears and golden apples are low, banana none, most of the spices are high which might explain the problem with acidic food.
    • CommentAuthorEric_L
    • CommentTimeApr 9th 2007
     
    Hello.

    I'm Eric. I'm Marie's spouse, and I can eat anything I want (although I don't, since I like NOT poisoning Marie).

    Obviously, I, too, live in St. Paul, MN. I'm 24, and getting my grad degree in Education.

    I love to cook (as does the rest of my family) and am always trying to find new ways to rise to the challenge of making tasty food that is totally Marie-proof. Perhaps I'll write up some of my recipes some day.
    • CommentAuthorRita
    • CommentTimeApr 9th 2007
     
    Count your blessings Eric. Hey, understanding ss has everything to do with chemistry. Have you taken any courses or plan to? They could be helpful to us as a group. Or if you know any chemistry students or professors we can ask questions if need be.
    • CommentAuthorwt
    • CommentTimeApr 10th 2007
     
    Welcome Eric

    Hope you and Marie figure out the latex thing.
    • CommentAuthorRita
    • CommentTimeApr 10th 2007
     
    Ingrid, I've read that stress can be one of the triggers that pushes one into the more severe symptoms of ss. At the time my symptoms became worse, I was facing the prospect of losing a parent. But then I know I did some damage at the same time when I accidently overdosed on three Excedrine. (It was on O.D. for me).

    So as for it being ALL in your head. That is not the case, but I think stress can be a catapult for exacerbating our symptoms and bringing them to the forfront. One doctor told me stress is to blame for most of the illnessess people experience. Does this mean cancer is "all in your head?" How many of us know people who have died of cancer after periods of prolonged stressfull situations? Christopher Reeves wife for example.
    • CommentAuthorKathryn
    • CommentTimeApr 11th 2007
     
    Hi all, it's nice to meet you.

    My name is Kathryn, I'm 25, and I'm in Queensland - Australia. The whole concept of ss is very new to me... it's all yet to be confirmed by my doctor next week - but I think I've joined the crew. After being sick for the last few years I'm excited to finally have a possible answer.

    My main symptoms are nausea, nasty pain, vomiting, lethargy, and itchy skin. I have gone through several doctors in the last few years and have been treated constantly for stomach ulcers, hyperacidity and damaged stomach lining. (I blamed the itchy skin on the medication, as it was a later developed symptom) I finally got referred to a specialist last month and went into hospital for stomach biopsies which showed up nothing except for a normal looking stomach with minor lining damage. It was back to the drawing board (with me feeling like it was all in my head).

    I contacted my cousin who I knew suffered from food intolerances to ask what type of "doctor" to see next... as the regular type weren't helping me much. She replied with the answer "I'm sorry... but it sounds like you've got what I've got". She also told me that it's genetic. It's amazing the things you don't know about your own family.

    I feel quite silly for not considering a food intolerance, as I knew that there were several foods - tomato, capsicum, wine, acidic foods etc that I refused to eat simply because it resulted in me being really sick. I thought they were all foods that were irritating my non existent "stomach ulcers".

    Anyway, after this info from my cousin, I jumped straight onto google (as you do!) I came across this fantastic site, have been eating a low salicylate diet for a fortnight now (thanks Beth), and I'm a new person. I have stopped the medication that I previously couldn't do without for more than 24 hours without the vomiting starting again, magic. The medication I was on was an acid inhibitor - so I guess that's why it had been reducing my symptoms.

    I'm also feeling very lucky for not having the severe reactions to salicylate that other people on here seem to have.

    I do have one big question - does cardio exercise make anybody else sick?? I love to exercise, I walk, I swim, I go to "non cardio" gym classes - but as soon as my heart rate increases I generally throw up. I went for my first run last night without being sick (a big achievement) - so I think as I get better so will this problem. I'm just wondering if anybody else has experienced the same problem?

    Oh, and to the question about stress from Ings - yes, if I am stressed out, my symptoms are significantly worse...

    Thanks Beth and everyone for all the info on here, it's been beyond helpful.
    • CommentAuthorTEDDY
    • CommentTimeApr 11th 2007
     
    Hi Kathryn

    Nice to hear from you. I like you am new to SS so can't really be too helpful to you like the others on the site. I too am looking forward to starting my elimination diet and hope to be free of pain and all the other horrid symptoms I suffer.

    Hope you get as much from this site as I have. At least in Australia they seem to be quite up on SS as do the US so like you I am very grateful to have found Beth's website and all the wonderful help eveyone on here has given.
    • CommentAuthorMarie
    • CommentTimeApr 11th 2007
     
    I had exercised-induced asthma, which often led to me throwing up or at least being really nauseous, and after I cut out salicylates (and amines, and MSG) the nausea is gone. I still have a hard time breathing when I exercise to get my heart rate up, but no more stomach blech to go with it!
    • CommentAuthorBeth
    • CommentTimeApr 11th 2007
     
    Ingrid -
    Rita's right stress can definitely effect your physical health. Especially for those of us who are sensitive already stress can be that last straw that pushes us over the edge. I know that my symptoms get notably worse when I am under stress - I think that is partly due just to the stress and partly due to the fact that I am much more likely to give in to the temptation of eating poorly and having tasty treats when I'm stressed. Either way though I've read that stress can really effect your physical health from a variety of different sources so I think it has an influence on your health for sure. But, I agree with Rita "it's not all just in your head" - I know my own experience well enough and have talked to enough people to know that with out a shadow of a doubt.

    Eric -
    Welcome to the forum! It so great to see a spouse taking such active participation! And I want to applaud you for being willing to avoid certain foods and products on behalf of your wife! I know what a difference that makes. I remember how surprised I was to learn that no matter how good I was if my husband had eaten something that was a no-no and I kissed him I could end up sick. So, on behalf of all the SS wifes out there I thank you! And I'm so glad to hear that you are working on some safe recipes - I'm sure all of us here on the site would love it if you would share them with us - either on the forum or you can email me and I can post them up on the recipes page (I'll be sure and give you credit for them) :)

    Kathryn -
    Welcome to the site! I'm so glad to hear that it had been helpful for you so far and I hope that it is even more helpful to you in the future. Thank you for sharing your story - I found it especially interesting as I have a cousin who has similar symptoms to yours. It's amazing to me as I start to think about it how many people in my family have symptoms of MCS and SS - I want to help them and tell them "I know why you're getting sick" or "I think I know how to help you" but I'm afraid I would sound pushy or preachy or that they just wouldn't believe me or that I'd be wrong and they would have some other problem instead...I don't know...I guess for now I'll just be as open and available as possible so that if there ever comes a day when they don't know what else to do and they call me up like you called your cousin I can say like your cousin said "I'm sorry... but it sounds like you've got what I've got" and then offer as much help and support as possible.

    Health to you and yours -
    Beth
    • CommentAuthorKathryn
    • CommentTimeApr 12th 2007
     
    Hi all, and thanks for making me feel so welcome :)

    Marie, thanks. It's interesting to hear about exercise induced asthma, I did have asthma as a child but it stopped when we moved house. Funnily enough we were living on a blueberry farm... and when we moved house it was gone. I think now that maybe it was a symptom of all my blueberry eating. I'm having a lot of "ah ha" moments recently, where things from the past are making more sense to me... such as I haven't taken asprin for years because it gives me a nose bleed. It's nice to know that the nausea with exercise goes away, thanks. I've noticed a big improvement already.

    Beth, I'm not sure what to do about your cousin, I hope that he or she asks you about it sooner rather than later. Even if it's not ss then at least it is something eliminated from the list of possible causes. If I had known that my cousin's intolerances were genetic then I probably would have looked into food intolerances earlier... however I know what you mean about people believing you, it's amazing how many people don't seem to think that a food that they can eat could make another person so sick.
    • CommentAuthorwt
    • CommentTimeApr 12th 2007
     
    Maybe, people believe what you say, they just like what they eat or their lifestyle more and don't feel "bad enough" to want to change. Most of the people I have mentioned it to have made these comments or they say "I've got this medication".
    • CommentAuthorRita
    • CommentTimeApr 12th 2007
     
    WT, you always hit the nail on the head. Kathryn, when I was at my worst, I experienced wheezing when I did laps in the pool, I couldn't run or walk because the salicylates were affecting my tendons. For the longest time I could only walk a short distance because of pain and weakness and was pretty much confined to home......and I love to travel. The salicylates were also causing a throbbing pain in my back which prevented my from sitting down. For almost a year I had to stand or lay down for everything. But I'm back on the road again. I'm a bleeder too. That was one of my first symptoms.
    • CommentAuthorTEDDY
    • CommentTimeApr 12th 2007
     
    Hi Rita

    Interesting to hear you say that you are a bleeder. I bleed terribly even just getting a simple blood test or at dentist etc. I also haemorage when I get operations. I had to have a hysterectomy at the age of 29 due to severe bleeding every month. I didnt know that bleeding was a symptom of ss. Its great to gain all this information from all the people on the site. I am learning so much as I go along.

    Thanks everyone
    • CommentAuthorRita
    • CommentTimeApr 12th 2007
     
    Hi Les, in another of my entries I mentioned that at my worst I experienced nosebleeds on a daily basis (after blowing my nose), bruising, small red spots on the inside of my lips, heavy, painful menstruation, and blood in my urine. Fun stuff. Salicylates block the bloods ability to coagulate or clot. It is a blood thinner. Controlling salicylate intake has resulted in cessation of all these symptoms except for small amounts of blood when I blow my nose if I've cheated. You can tell if you have blood in your urine if it is more dark orange than yellow.
    • CommentAuthorwt
    • CommentTimeApr 12th 2007
     
    Rita,
    You seem to know a lot about vitamins and salicylates. Do you think Biotin would be helpful?
    • CommentAuthorRita
    • CommentTimeApr 13th 2007
     
    Wt, not sure about Biotin. Haven't run across it yet in relation to ss. What ya got?
    • CommentAuthorwt
    • CommentTimeApr 13th 2007
     
    http://lpi.oregonstate.edu/infocenter/vitamins/biotin/index.html#function
    regarding glucose
    Swiss chard is the only thing I found with biotin unless in vitamin pill form.

    Fibromyalgia seems to have very similar symptoms except for pain pressure points however those folks can actually eat SALif they are not on guaifesin protocal. SAL seems to block uptake of Guaifesin. I think it could be more MSG type symptoms. The pain is real but no cause is found.
    • CommentAuthordramaqueen
    • CommentTimeApr 23rd 2007
     
    Hi everyone!!! I'm newcomer Danielle, and I have become addicted to this website!!! I'm 30 years young and have had chronic hives for 2.5 years, due to excercise and cold temperates!!!

    I'm Australian and therefore find it very difficult to escape the heat!!! My low sal diet began on Saturday and thanks to this website I now know I will not starve!!!

    I cannot say enough thank yous for everyone who replied and is so helpful...unfortunately we are all linked by these horrible preservatives!!!

    Here's to a hive free life although I'd settle for a week!!!

    Danielle
    • CommentAuthorAnna
    • CommentTimeApr 24th 2007
     
    Hello, my name is Anna and I am 26. I live in Queensland, Australia.

    I am salicylate sensitive and have been on the FAILSAFE diet for about 18 months.

    My symptoms include:
    - angiodema (swelling) in my feet, hands, eyelids, lips, throat, tongue
    - chronic urticaria (hives)
    - memory loss, confusion, vagueness, 'brain fog'
    - irritability, anxiousness
    - general feeling of unwellness
    - tinnitus (ringing in my ears)
    - fatigue
    - restlessness, insomnia
    - PMS
    - inability to recover from excercise (prolonged breathlessness and redness in my face)
    - inability to tolerate milk

    Am sure there are others I am forgetting at the moment but you get the idea.

    The FAILSAFE diet has been a life-saver for me - reducing most of my symptoms. I also take a Zyrtec daily (twice when I am not doing well) which seems to help minimise my hives. Every time I forget to take it or try to go off it they get a lot worse.

    It's interesting to see people's comments - I feel like I could have written a lot of the lines myself!

    What I am trying to find out at the moment is:
    1. How are salicylates processed by the body;
    2. Why is vanillin affecting me so much.

    There always seems to be a long list of questions, lots of pitfalls and constantly changing variables with salicylate sensitivity. That is where a forum for discussion comes in handy!

    Looking forward to sharing knowledge with everyone,

    Anna.
    • CommentAuthorTEDDY
    • CommentTimeApr 24th 2007
     
    Sorry Anna I dont have the answers but just to say Hi and nice to welcome you to the forum. Like you I am so thankful to have found Beth's forum and to be able to share feeling and thoughts with other like minded people is a wonderful thing to be able to do. Well done on your Failsafe diet. I am looking forward to getting started on mine when I return to hospital mid May. Nice to meet you. Kind regards

    Teddy
    • CommentAuthorMarie
    • CommentTimeApr 24th 2007
     
    About vanillin: it's an artificial flavor, so that could be it, but specifically it seems to be made either from a petrochemical or from lignin (a byproduct of making paper that is found in trees). If you've got the multiple chemical sensitivities too, the petrochemical version could be the big problem, and who knows what kind of tree the lignin came from, so that could also be a problem. I seem to have trouble with things that come from trees with high levels of salicylates in their fruits/nuts (coconut, tea tree, willow obviously) so maybe the whole tree is higher in salicylates, including the lignin that was used to derive vanillin.
    • CommentAuthorSalmommy
    • CommentTimeApr 24th 2007
     
    I am 27, originally from close to Minneapolis/St. Paul and now reside in Arizona, with my husband of 7 years. I have three gorgeous little girls, one of whom is struggling with what we believe to be a salicylate sensitivity. I feel so blessed to have found this website and hear from real people dealing with all this.
    I never would have thought that we would deal with a food sensitivity. Both my husband and I have always stressed healthy eating, focusing on organic meats, homemade food, grains, fruits and veggies. We use natural remedies whenever possible, mostly homeopathy. But our daughter seems to be super acidic and we need to find the best way to take care of her.
    Sometime I will get down to writing about our daughter's stuggle with sal sensitivity, mostly involving her mouth, and a diagnosis of "thrush". If anyone has had a similar experience, help me out. This poor girl has even lost the skin off her tongue when it got REALLY bad once. Another long story. But, with the resources that I have found, I am hopeful that we are going to finally get to the bottom of this. It feels great to have found you all.
    "Sal"mommy
    • CommentAuthorBeth
    • CommentTimeApr 25th 2007
     
    Anna, welcome to the forum. I'm glad that you found the FAILSAFE diet. It is a very good diet for those with chemical sensitivities and I have a lot of respect for the research they have done to come up with it. I do sometimes feel like it doesn't eliminate salicylate quite as much as I would though and have found the best thing is always to figure out what works for each individual. So, I'm glad to see that you found something that works for you :) To be honest I don't know what the chemisty is for how salicylates are processed in our bodies - I know though that it is a chemical and toxic to everyone - and I believe that it is processed in the liver and that those with ss have difficulty processing it creating side effects (syptoms) similar to the side effects of a drug. I'm hoping we can get some genuine scientists and doctors on the site soon to help answer questions like that but for now everyone one the site is really good about sharing articles and research that they've done on their own so maybe someone will have more information on this for you soon. As for vanillin I think Marie answered that well.

    Salmommy, I'm so glad that you found the site! I can only imagine how difficult it would be to watch your child struggle with sensitivities and not know what to do about it - it's difficult struggling with this stuff personally but I think it would be even harder to watch your child struggle with it. So, I am so glad that you found the site and really truly hope that it will help you get your daughters sensitivities under control. I don't know if this would be helpful for you but I used to live in AZ and still keep in contact with my homeopathic doctor there - he's truly a wonderful doctor and I've known him and his family for years - I'll be honest that he doesn't know a TON about sal sensitivity (what doctor does?) but because of my condition he does know a bit about it and has been very helpful. If you don't already have a doctor you are working with let me know and I can get you his contact info. Welcome to the site and I hope it is a helpful resource for you.

    Health to you and yours -
    Beth
    • CommentAuthorRita
    • CommentTimeApr 26th 2007
     
    Ana, concerning your question about how salicylates are processed, I found an interesting website that explains alot.

    http://www.inchem.org/documents/pims/pharm/pim642.htm

    It is can be very technical, but I hope it helps.
    • CommentAuthorRita
    • CommentTimeApr 26th 2007
     
    Hi Danielle, I'm glad your low sal diet seems to be working. If in fact you come to the conclulsion that you are sensitive to salicylates (because your symptoms improve) let me incourage you to begin an elimination diet very soon after. Reason being that you might end up with one or two symptoms that will not go away even though you are eating low-sal. They only way you will be able to find the culprit is to begin with a very basic diet (my doctor suggested plain white rice and hamburger) for three days. No seasoning except sea salt. Then slowly add on foods that are low in sals and record what you react to. This is the best way to get to the bottom of things. Then you can also figure out if it is food or your personal products that are causing you the problem. But remember, record, record, record, everything you eat. Even the seasoning and the way you prepared the food. Many times salicylates will cause a delayed reaction and your food diary will help you to remember what you ate the day before and help you make connections.
    • CommentAuthorSandra
    • CommentTimeApr 27th 2007
     
    Hi

    My name is Sandra and I am from Suffolk in England. Just want to say a big thank you to Beth and everyone who has put comments on this website - it's brill and certainly makes you think 'you are not alone'. I've had chronic hives for 18 months and only when I complained how it was affecting my daily life and relationships at home did the Doctor listen! Thankfully she did and I went to see the 'skin' specialist two weeks ago. He told me I had chronic urticaria, delayed pressure urticaria and dermatographism - big word for red scratch marks that don't go away for 8 hours! Anyway he suggested a low sal diet and hence I found your website. I have been very strict with myself and already feel so much better - my sleeping has improved because I'm not waking up scratching and the skin that was bleeding because I scratched so much is starting to heal. I've also noticed the dark circles around my eyes are beginning to turn a normal colour and my stomach does not complain so much and the pains have gone away. I have to go back in two months and see how things are but for the time being things are looking up.

    Anyone else suffer delayed pressure urticaria/hives?

    Sandra
    • CommentAuthorTEDDY
    • CommentTimeApr 27th 2007
     
    Hi Sandra

    Welcome to the forum that Beth set up. Like you I found Beth's website and it is fantastic. As you will know not much stuff about salicylates etc in the UK. I am from Scotland and I have recently been diagnosed with lots of intolerances etc that I used to blame on my type 1 latex allergy which causes me anaphylactic shock. Then my consultant told me that I was intolerant of salicylates, benzoates and MSG. I had my suspicions about the MSG but I had never heard of sals or benzoates.

    I was then diagnosed as allergic to sodium metabisulphite which is also a preservative and unfortunately for me in my epipen of adrenalin. But I still have to adminsiter my epipen in cause of my latex allergy and told to 'let the emergency services worry about the counteraction bit they will administer'. I am all knew to it and have not had my elimination diet yet - mid to late May and cant wait but like you say this is a fabulous website and until I found Beth and all the members I felt so isolated and alone.

    I have hives and as you mentioned if you scratch your skin it leaves a mark there for a very long time afterwards this was one of the things the consultant at the hospital noticed in relation to the salicylate theory.

    I try not to scratch but it drives you so crazy you sometimes cant help it.

    So I have MCS as I have a few different problems.

    I didnt know the word 'dermatographism - but the marks do last for hours afterwards.

    I have also been getting unexplained bruises on my legs and arms and I dont know what is causing that so anyone got any ideas to what could be causing them. They look as if they are in identical places even although on both legs and arms - seems a bit strange and I dont have a clue where they come from. I do bruise easily - when I bump myself - my husband calls me a peach not in a flattering way just that I bruise so easily!!!!

    I definitely didnt have a bump or anything so a mystery. I feel at a low ebb right now health wise and cant wait to get on my salicylates elimination programme for real. I do hope I see great improvements although I must admit just trying to be careful on my own I am feeling a bit less unwell. I am not confined to my bed so much as I used to be.

    Welcome to the website and I hope you gain as much from it as I certainly have. Nice to meet you.

    Teddy {Scotland}
    • CommentAuthorSandra
    • CommentTimeApr 27th 2007
     
    Nice to 'meet' you Teddy from Scotland. Like you say, 'As you will know not much stuff about salicylates etc in the UK' - how true. When I first went to the Doctors he told me to try and find out for myself what could be causing the hives - so I wrote down everything I ate and made a note of when these rashes would appear - what I had been touching or doing. He told me to avoid anything with red or yellow in it as in spices, preservatives etc. With abit of research on the internet - I concluded that benozates were part of the problem so I changed washing powders, shampoos, washing up liquids etc and cut out anything with benozate in it - fizzy drinks, sauces etc. However, the symptoms persisted and took me back to the Doctors and then the Consultant at the Hospital and this low sal diet. I'm sure you will notice a difference when you start yours and wish you all the luck. I felt as though I had had my throat cut that first week having been given a long list of foods I couldn't eat anymore and the bit "If you look at the ingredients and can't pronounce it or are not familiar with it" really did my head in!! However, now I look at what foods I can eat and what meals I can make with them - I've come to terms with it and just eat it. I'm now learning to eat food to live/survive and not the other way round.

    There seems to be quite abit about stress maybe causing the onset of some of this and certainly at the time my hives first appeared I had been under alot of stress, however, I know at times of stress I eat for comfort and would go for takeaways and processed foods alot more!! I'm trying to lose weight at the same time and I cannot fail to see how I won't following the low sal diet with all this fresh produce! I've lost five pounds in the first two weeks!! So if anyone has any good 'low calorie' recipes to follow I would be grateful.

    As I said before I don't feel 'alone' anymore and thankyou everyone.

    Sandra
    • CommentAuthorTEDDY
    • CommentTimeApr 27th 2007
     
    Hi Sandra

    Nice to meet you. I know how you feel. It has really been a case of doing your own research and I just cant wait to start my diet. Prior to all my latest problems I was really petite size 10 but I have put on 2 stones in weight [unexplained] and cant fit into any of my own clothes and I am wearing size 16 trousers but from morning to night my stomach can swell enormously and I look as if I am pregnant. I tried the baking soda which helped a bit but only been cutting out things on my own. Hope like everyone on the site I will soon be able to put up how well I am doing and hope to loose all this weight I have put on. I just feel puffed up all the time.

    I think we have to become our own experts and today my son collected a prescription for me for oilatum but the one I get has to be perfume free and what did they give me one with full perfume in it. I phoned them to tell them of the error and they blamed the doctor so I phoned the doctor and they told me it was definitely the chemist fault! Typical of here. Blame culture. Then I noticed that my medication was also wrong and there were tablets missing. So I deduce the chemist was to blame.

    As I said to chemist if that had been elderly person or someone with reduced sight they may have used it in error and what could have happened.

    Definitely in the UK they do not take intolerances or allergies seriously.

    There I go moaning again.

    Good luck on the continuing diet.

    Take care and really nice to speak with you

    Teddy
    • CommentAuthorBeth
    • CommentTimeApr 27th 2007
     
    Sandra, Welcome to the site! I'm so glad that you found it and sooo glad that you've noticed improvement one a low sal diet - I think the most encouraging things when dealing with something like this are when you realize that you're not alone and when you realize that it's really helping, it's really worth it :) so, I'm glad to hear that you have experienced that. And I hope that you find the site helpful as you journey through this process.
    Teddy, Rita had mentioned that she used to bruise really easily and mentioned that it got better when she went off sal's and started taking vitamin K - hopefully she can tell you more about this, but for now you might want to look into eating more foods with vitamin K or taking some pure vitamin K supliments.
    • CommentAuthorRita
    • CommentTimeApr 28th 2007
     
    Hi Les, so you're a peach too! As I have mentioned in another entry, sals inhibit the bloods ability to clot. Vitamin K is involved in the clotting process and sals inhibit their ability to do their job. Being on low sal diet has stopped the spontanious bruising and other bleeding problems. I usually will eat a heart of romaine lettuce every other day to make sure I keep up on my vitamin K and take a multi-vitamin which contains vitamin K when I know my sal levels might be elevated.
    • CommentAuthorTEDDY
    • CommentTimeApr 28th 2007
     
    Hi Rita and Beth

    Thanks for the tip about vitamin K and I will certainly give it a go. I do like lettuce so more of that is fine for me.

    Thanks