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    • CommentAuthorTEDDY
    • CommentTimeFeb 20th 2008
     
    Hi Esta Jo

    Dont know if you can get this in Philli but I can only use doublebase - this is my alternative to soap, for shaving and as a mosturiser on my skin etc. No more chanel no 5 for me anymore. Also I use the crystal stick for a deoderant now and I have never looked back. We definitely need to try to eliminate salicylates as Rita said not just in our dietary intake but personal hygiene use etc. Hope you find suitable replacements. It took me a while to be able to get the crystal stick here in Scotland but now that I have got them I buy in bulk so that I dont run out.

    Take care Esta Jo
    Teddy
    • CommentAuthorLady TS
    • CommentTimeFeb 20th 2008
     
    Hi all!
    My name IRL is Tanya. I am 32 and I am living in Ohio, though my heart is still in my native mountainous CO. ;)
    I came across this site last week doing a search for broccoli allergy and finding it is high in salicylates.
    I have had hayfever for as long as I can remember. Starting in my teens I started to have itchy mouth and ears when I ate peaches. Then after I was married I started reacting to dried fruit, especially apricots. Those were the extent of my food allergies until after the birth of my third child, 2.5 years ago. Since then, my allergies have gone haywire, and I am not getting much relief during the winter season when once I did.
    I had done some research and found out about Oral Allergy Syndrome, where the proteins(I think) of allergy-inducing pollen are much the same as in certain foods and the body reacts to the foods the same way as it does to the pollen. I have been keeping track of what I react to, and sure enough the foods are on "the list" for Oral Allergy Syndrome(mostly ragweed and birch).

    Until last week. I was cutting up freshly washed broccoli and had a few pieces and had a reaction almost immediately. That was the only thing I ate. I am pretty sure that's the cause of my reaction(itchy ears and throat, sneezing, runny nose, congestion). This is the first food that was NOT on the list that I have reacted to...so I got on google and found myself here.

    All of the foods that I have reacted to on the Oral Allergy Syndrome list are moderately high to very high in sals. So I think there is definitely a connection.

    I have mentioned my allergies to my family doc and she was very ho-hum about it. Told me to take loratadine(her drug of choice--she told me to give it to my 7yo son too for very mild headache and possible allergies). But the loratadine does just about nothing at peak allergy season. She didn't have any advice. I have thought about going to an allergist, but I do not have insurance and frankly, I feel like I would be throwing what little money I have at the wind in trying to treat this thing. My most serious consideration lately has been NAET, but I am still a bit skeptical about it. For the time being, I think I will be going the way of the elimination diet or a low-sal diet and work from there.

    I have been speculating and trying to figure out what has caused this. I don't know whether it's having moved from pristine CO to OH farmland where I am sure I am exposed to far more pesticides/herbicides/pollutants. Or hormonal imbalance(low progesterone suspected) due to having 3 kids and nursing for such a long time. Or if I really messed up my body canning tons of tomatoes last year during peak ragweed season(my most miserable allergy reaction of my life!)last fall. Or if I'm just getting old. ;)

    Anyway, just felt I needed to come here and officially say "Hello!" before I posted too much on the forum!

    Lady TS
    • CommentAuthorKatieP
    • CommentTimeFeb 20th 2008
     
    Hi everyone - I'm KatieP from Scotland and have been reading this forum for about a year. I feel like I know everyone personally now and thought it about time that I said Hello and joined in the discussion. Since I was about 17 I have had an excruciatingly itchy nose after eating or drinking certain things but I have never been able to pinpoint what it was as I would react to something one day but not on another. I would go through phases where the itchy nose hardly bothered me for months and then others when it would happen several times in quick succession. It was only ever my nose that was itchy but it would last for a couple of hours (usually always in restaurants or pubs) and I would claw at it until it was almost purple - not very socially appealing but it was not an itch that could be ignored. Afterwards I would often be exhausted!! I also had one huge bout of uticaria in my early 20's (now nearly 40 .....) and suffered persistent cough for a while when I was in my late teens but seemed to grow out of that.

    Last year I again had the itchy nose in a hotel but this time it spread to my forehead and hairline, I coudn't get my breath and my limbs started to lose sensation. I did think my number was up but I was eventually taken to hospital and treated there. The next day my speech was slurred and I just felt awful. For the next two weeks I had the worst upset stomach ever with joint pain and vertigo. I recovered from it all but seemed to be extra sensitive after that and got an itcy nose really easily and often could not get a proper breath. I then developed a cough after eating certain things (again - often random) which then turned into a persistent cough. Along with that came several other symptoms including a strange rash that comes up on my forearm (but not hives), occasional hives (mostly one at a time) on my face or neck, vertigo, waking up choking, difficulty in getting a proper breath and stridor in my chest (only when lying on one side).

    Because they suspected anaphylaxis from the severe reaction I was referred for testing but other than an allergy to dogs and possibly kiwi fruit, there was nothing much came up. On looking further they have diagnosed salicylate sensitivity and put me on an elimination diet. This seemed to work and some of the symptoms I had started to disappear - the cough, vertigo and rashes all disappeared and breathing problems lessened greatly. I still would get a really itchy nose sometimes though so have started to wonder whether it really is salicylate sensitivity. I tried an aspirin to test it and the first time it made me cough but I tried it again and was fine. I tried it a third time and it made my nose itch but a fourth time was fine again.

    I am in very good health otherwise and am a bit of a fitness freak. Other than the occasional more drawn out reaction, I don't feel that my life is restricted in any way by this (and I really feel for those of you who clearly suffer terribly with it) but the randomness of it all continues to puzzle me as do some of the symptoms. I remain dubious about whether I do actually have salicylate sensitivity at all?

    Anyway - nice to join you all at last

    KatieP
    • CommentAuthorTEDDY
    • CommentTimeFeb 20th 2008
     
    Hi KatieP

    Nice to welcome a fellow Scot to Beth's forum. What did the hospital diagnose or say was the problem when you were taken in for the episode in the hotel? Have they ever given you antihistamines to see if they stopped the itch? It could be so many things and did they send you for allergy testing i.e. skin pricks or patch testing etc?

    It is so hard to tell what is wrong but if you have tried the elimination diet you should be able to pinpoint if you have salicylate sensitivity or not. Also keeping a diary really helps. I know I always go on about keeping a diary but it really does help you to pinpoint what is going on. Not just what you are eating, what you are doing, where you are, who you are with, products you use, come into contact with, smells etc. It is like being a detective and trying to fit all the pieces of the jigsaw together.

    Anyway just to welcome you to Beth's forum and hope you find it as useful as I have and that you get the help and support you need from everyone. Good luck.

    Take care
    Teddy
    • CommentAuthorRita
    • CommentTimeFeb 20th 2008
     
    Hi Lady, your worsing condition could be brought on by a combination of all those reasons stated. Glad you're on board.

    Katie, I'm so glad you jumped in. Just my thought on your story, I know the places that you said you had your reaction would be places were people smoke alot. Have you noticed that smoke bothers you. It really bothers me and makes my lips swell right up. Perhaps you are sensitive to phenols.
    • CommentAuthorKatieP
    • CommentTimeFeb 21st 2008
     
    Hi Teddy and Rita - thanks for your replies. Teddy, the hospital said it looked like anaphylaxis - no swelling or rashes that night but itching, breathing problems and blood pressure drop. I was referred to the allergy clinic but, prior to the appointment I had a telephone consultation with the consultant from the allergy clinic. She was brilliant and very thorough - probably the same clinic that you attend Teddy. After going through everything (she homed in on the eight cups of tea I had drunk over a very short period of time that day followed by a mouthful of alcohol which started everything off - It really was by far the most tea I have ever drunk in my life but I hadn't given a second thought!!) she thought it may well be salicylates - she said it is not an allergy as such but a hyper-sensitivity which, once triggered, gives the same symptoms. She also said that it can cause anaphylaxis in some cases. I then had skin prick tests at the clinic just to rule out anything else. The only thing that I thought might come up was dogs as, ever since that incident in the hotel, I found myself getting hives if my dog leaned against my neck. I've had him for ten years and never had any problems until after that night. Dogs did come up on the skin prick test and possibly kiwi fruit. She then put me on the elimination diet for three months which I followed pretty much to the letter. I did feel much better but still had occasional random reactions to things containing no salicylate which is why I started to question salicylate sensitivity. There is no one thing that consistently sets me off but I am usually always inside when it happens, often quite warm and alcohol is a very common trigger. The consultant did say that heat and alcohol are quite common triggers for allergies as they tend to rev the body up a bit. I never could tolerate alcohol and it was often that which seemed to set my nose itching over the years but there are also times when I could handle it with no symptoms. Now that I am more sensitive I don't drink alcohol at all.

    Rita - I have often wondered about smoke too but given that I have partaken of the weed myself at times in my past (not now) I didn't think it could be that. Also, smoking has been banned in public places for some time here and certainly since before the hotel incident. Maybe the phenols could come from other sources though and I will look into that so thanks for the tip.

    I have an inhaler and epipen now - I don't think I will ever need the epipen but the coughing and stridor means I do use the inhaler a fair bit. The hospital is certain that I have developed asthma too but it is not that bad. I eat normally now as I found the elimination diet to be pretty unhealthy and the complete opposite to what I would normally eat. Also, I don't really want to stay on the diet if it is not salicylate sensitivity that I have (given the couple of strong reactions I had when I was on a salicylate free diet). As I said earlier, the symptoms nearly all disappeared when I was on the diet and they started to come back once I started to eat normally but I am fortunate that the symptoms are irritating rather than life changing and I prefer to live with them than go back to that dreadful diet. I suppose it is all a learning game and I am at a very early stage with finding out about it. I just want to do all I can to avoid another bad reaction and make sure that the current more geenral symptoms don't get any worse - this forum has been really useful over the last year and aside from all the info I have obtained, I have found myself silently wishing people luck when I see they are going for tests or they have been feeling poorly. I also wonder where 'wt' is - I hope he is OK.

    Anyway - nice to talk with you again and thanks for your input once more.

    KatieP
    • CommentAuthorLara
    • CommentTimeFeb 21st 2008
     
    Hi KatieP

    I suspect that you probably don't have Salicylate sensitivity if you've managed to take Aspirin without having any major reaction to it. Aspirin (acetyl salicylic acid) has a high concentrate of salicylate and the quantities of salicylate present in food is tiny in comparison with an aspirin tablet. My immunologist told me that you would only react to salicylates in food if you were very sensitive to aspirin. I would never take an aspirin again as the last time I took one my throat closed up and I couldn't breath and I nearly died.

    If your symptoms improved on the elimination diet you are probably sensitive/allergic to something else in food. Also I agree with Rita about phenols, have you been checked for this? I've never smoked but if people smoke near me I start sneezing like mad and usually end up with a migraine.

    Your cough does sound like asthma, thats how mine started and I was coughing for ages before I went to the Dr's and was diagnosed. I hope you find out whats causing your symptoms.

    Take care
    Lara x
    • CommentAuthorKatieP
    • CommentTimeFeb 21st 2008
     
    Hi Lara - yes I did ask the clinic about this but they said that you can have salicylate sensitivity but still have a high threshold before you react. They also said that it has a cumulative effect so you might be fine for days and then find the symptoms starting once you've gone over your own personal threshold which apparently can vary quite dramatically according to all sorts of factors. One other pointer she gave is that certain salicylates may not bother you whilst other ones do. I only react to aspirin some of the time which makes some sense if it is accumulative and if I am fortunate enough to have a high threshold most days. She added that there is a strong connection between asthma and aspirin sensitivity so the co-incidence between developing asthma and some reactions to aspirin suggests something.

    I'm not sure if it is possible to be tested for phenol allergy is it? Maybe it is something else that comes down to personal observations but I would be interested in how others discovered that this was a problem - what else is it in?

    I can also see how you could go quite mad trying to work it all out.

    Thanks again Lara

    KatieP
    • CommentAuthorRita
    • CommentTimeFeb 21st 2008
     
    Katie, I would not write of ss so quickly. You may however be sensitive to other chemicals, phenols and amines being the most common to ss people. So, even though you may have been on a ss diet, if you were still consuming these foods, you would have a bad reaction. Milk, bananas and cocoa contain phenols. They are the "parent" chemical of salicylates. I know the symptom I get from drinking milk or having dairy is a coughing and congenstion. Here is some info for you to look into on phenols. http://www.danasview.net/phenol.htm Also, many ss people are senstive to wheat which is considered low sal but has been known to cause problems.
    • CommentAuthorBeth
    • CommentTimeFeb 22nd 2008
     
    First of all welcome to both Lady TS and Katie - I'm so glad to have both of your input and stories here on the forum.
    Lady TS - many of us have wrestled with where our sensitivities came from and what caused them and it seems often it is a combination of a lot of things not just one specific thing that sets it off.
    Katie, Rita is absolutely right! People who are sensitive to salicylates are OFTEN usually sensitive to other chemicals and foods as well. Also, the clinic is absolutely right - salicylates (and other chemicals like phenols) seem to build up in your body. The whole time I was reading your comments and you kept asking why you would react to something one time and not another it seemed so clear to me that this was most likely the reason. It seem like your sensitivity isn't as severe and you only react to things after having quite a bit of salicylate (in various forms). So, don't rule out salicylates quite yet, but DO look into other chemicals you may be reacting to - I think Rita's suggestion of phenols is a good place to start.
    • CommentAuthorLara
    • CommentTimeFeb 22nd 2008
     
    Hi Lady TS

    I'm also new to this site. It's great being able to share info with each other and with people who understand what your going through.

    I also have 3 children. I found my symptoms improved when pregnant and didn't need to use my inhalers etc. Then after each pregnancy my symptoms came back and were worse then before. I had my 3rd baby in March last year and my symptoms are the worst they have ever been. I'm convinced that hormones play a part in all of this. Like you say maybe low progesterone is the culprit?

    I have an appointment tomorrow to see an NAET practitioner. I'm also sceptical but I thought what the hell give it a go. I'll let you know how I get on!

    Take care
    Lara x
    • CommentAuthorTEDDY
    • CommentTimeFeb 22nd 2008
     
    Hi Katie P

    Amazing you go to the same clinic! Like Rita and Beth said don't rule out the salicylates just yet. We all react differently and if you keep a diary you can try to pinpoint the problems. I know I keep on about diaries but it really is the only way to try to figure out what is causing the problems. Also like Rita said it can be other things as well I have other allergies along with my salicylate intolerance so it takes a long time to get the right diagnosis.

    Hope you are feeling well and funny you all talking about smoking. I cant stand when anyone smokes near me and I didnt know anything about smoking and others on the forum having problems with this too.

    Maybe there is a link here somewhere?
    Something else to look into.

    Teddy

    Hi Lara

    Hope you get on okay with your appointment tomorrow. Will be interesting to hear how it goes.
    • CommentAuthorLady TS
    • CommentTimeFeb 22nd 2008
     
    Lara--yes, let me know how the NAET thing goes!

    I reacted to celery today, I think due to my Oral Allergy Syndrome. So, mark that off my list of foods I can have as well.

    We got our cats not long after my 3rd child was born and they do come in sometimes. Maybe that is a contributor as well. I think we are going to banish them from the house and wash all the bedding and such that the cats lay on. I've been washing our bedsheets much more often and in HOT water and nights have gotten much better. Oh and I also got an allergy mattress cover to help--and I think it's done a lot of good.

    Now, back to the no-sal diet. Today I was doing fairly well until I ate that durn celery, lol!
    • CommentAuthorKatieP
    • CommentTimeFeb 24th 2008
     
    Hi folks - yes Teddy I have found the staff at the clinic really pleasant and helpful but I think I only have one more appointment now and then I will only return if I start having serious reactions again. I did keep quite a careful diary for the three month elimination period but there was just no pattern at all and the individual reactions were still very random, albeit to a lesser extent. I generally noticed that, overall, the reactions were much less severe and less frequent so Beth, like you say, it could just be the cumulative effect. I also can't work out whether your body 'resets' itself after reacting i.e. do you remain very sensitive after you have a two hour itching and coughing frenzy or does your body adjust to it? I ask this because I once deliberately took a load of sals as I was coming to the end of a reaction just to see what would happen - I know that sounds silly and risky but sometimes you have to do these things to test theories and understand what is going on! I wondered whether it would worsen or extend the reaction but it didn't so it left me wondering again whether sals really are the issue. I'm also not convinced that antihistamines improve things - in fact sometimes it feels like they make everything worse so I tend not to bother taking them during reactions and just let my system do its own thing. As you've all suggested it may be another sensitivity to chemicals rather than an allergy. Rita thanks for link to phenols - I see you mention bananas, milk and cocoa but I'm fine with these too - although milk does make me feel sluggish right enough and I tend to avoid it. I'll look into phenols more though but at first glance there is very little other info I see.

    I feel like I've been asking loads of questions and not actually helping any one else but I've just remembered that a really good House of Lords Report on the increase in allergies came out last year in the UK which might also be of interest to others. At the time of its publication, the media carried plenty of articles about 'reports show increased allergies' but not many people have realised that the report itself is extremely interesting and wortwhile reading. It's quite lengthy but very easy to follow and you can go straight to the sections that interest you. You can find it at http://www.publications.parliament.uk/pa/ld200607/ldselect/ldsctech/166/16602.htm

    All the best for now

    KatieP
    • CommentAuthorTEDDY
    • CommentTimeFeb 24th 2008
     
    Hi KatieP

    Thanks for the link to the House of Lords Allergy Report. I think they do them once yearly as we put these on our latex allergy forum. It is hard when you can't see a specific thing showing up in the diary method. Unfortunately you sound like me that you have other things going on and not just one thing so it is very difficult e.g. when I react I have to consider what am I reacting to. Then that is how the diary helps me as I can try to see was it related to salicylates, type 1 latex allergy, sodium metabisulphite allergy etc and then I try to avoid what I think may have triggered it in first place. But not easy. Right now I am not much help to anyone as I dont know whether I am coming or going but what I do know is that sals wise since changing my diet I am doing well there. So that is one thing in my favour. If I hadn't found this forum I would still be struggling on alone and trying to figure out things by myself so sals wise with all the support we get her I am coping with this.

    Just wish all my other issues were sorted out. Still we have to keep our spirits up and hope we feel better than we did before. I do hope Katie that you find out what is causing you the problems and that you feel better. I go back in April to that clinic so right now I have other hospital appointments going on for different things.

    You are right KatieP the reports from House of Lords are interesting and well worth a read.

    Take care KateP

    Teddy x
    • CommentAuthorKatieP
    • CommentTimeFeb 24th 2008
     
    Hi Teddy - I think this particular House of Lords report is a one off and was produced by their Science and Technology Select Committee who spent months taking evidence from a wide range of sufferers, charities and medical professionals. There may be other regular reports and statistics from government (do you have links for those?) but I think this big report was intended to explore a whole range of issues that had not previously been considered in a consolidated government report. For the benefit of non UK members and readers I should have mentioned that this is a UK Parliament report and they are known to be extremely thorough (I'm not on Commission - honest!! but I do have some experience of their methods in producing other reports and they are pretty determined in their quest to get to the truth!)

    PS - I am at the clinic in April too so maybe we will pass each other in the corridor without recognising each other!

    Take care too

    KatieP
    • CommentAuthorTEDDY
    • CommentTimeFeb 24th 2008
     
    Hi Katie P

    I will look for my appointment card and let you know when it is if its the same day would be nice to meet up. The reports I am talking about are about latex allergy so I will definitely look at your one. Thanks for mentioning this. Will let you know when apt is.
    Take care

    Teddy x
    • CommentAuthorRita
    • CommentTimeFeb 24th 2008
     
    Katie, did you already do the very restricted challenge phase of rice and meat?
    • CommentAuthorrowen
    • CommentTimeFeb 24th 2008
     
    I am so happy to find this forum. I have been struggling with SS for at least four years but only recently self-diagnosed myself. I am on Claritin 24hr almost constantly and this weekend I accidently overdosed myself. Scary! So now I'm back to dealing with this craziness by altering my diet. I am going to have to eliminate everything because I am soo sick of being sick! I am relieved to see that other people are dealing with this awlful thing. I love food and have always been fairly healthy, so I am having a hard time admitting that I have to accept what I have and deal with it. No easy fix. My question is: has anyone experienced luck with improving their sensitivity over time so that they can tolerate more foods? Does this craziness ever feel more normal and less restrictive? Thanks
    • CommentAuthorrowen
    • CommentTimeFeb 24th 2008
     
    I noticed some people talking about ezema-- Florasone, a natural cortizone cream, really helps me. I'm from Portland, OR. -Rose
    • CommentAuthorBeth
    • CommentTimeFeb 25th 2008
     
    Katie, when you kept a diary did you just write in foods and reactions or did you also include what products you used, what environments you were in, things you smelled, etc --- maybe foods are just a small part of what you are reacting to and other things (beauty products, cleaning products, etc) are more of what's causing your reactions since they are so random and spread out --- I ask because for me personally I was having a really hard time pin pointing what I was reacting to - one day I would seem to react to something (even something as basic as rice) and the next day I wouldn't, some foods that were high salicylate seemed to bother me others didn't, some low salicylate foods bothered me and others didn't, there seemed to be no pattern. Eventually I figured out that even though I do react to some foods there isn't much of a pattern with the foods I react to AND I figured out that the things that were giving me the biggest problems where synthetic chemicals like perfumes I would come in contact with, dish washing soap, detergent, shampoo, deotorant, cleaning products - these things were causing a lot of problems for me even though i thought that they weren't. Anyway, something else for you to think about.
    Rowen - welcome to the site! It's always nice to have new friends here to share our stories with :) It is possible for people to improve over time and be able to tolerate more foods. It's a process though and usually involves restoring some of the areas of the body that currently aren't working well. Rita, is a good person to tell you more about this as she has personally been able to introduce a lot more foods into her diet and has done a lot of research on all this. I also have been able to introduce more foods in and I think it is largely due to the probiotics and other supplements I am taking.
    • CommentAuthorJohnb
    • CommentTimeFeb 28th 2008
     
    Rowen,

    I know how you feel, I was diagnosed three years ago, and unfortunately (at least in my case) it does'nt seem to get better. What I can say is if you already haven't then try the elimination diet, that should at least confirm SS. My alergist prescribes me two medications (antihistamines)o take one is Fenofexadine (not sure of the spelling) and Ranitadine. It helps me eat some things I shouldn't. I know it's tough if you do have SS, and it will take time to adjust. I still miss a good strong cup of tea every morning. Decaf coffee just doesn't do it for me !!!

    The only other advice I can give is to prepare and cook as much of your own food as possible, then you know what it contains. My daughter makes me a simple sponge cake, with a simple filling and it always picks me up.

    Good Luck.
    • CommentAuthorrowen
    • CommentTimeMar 2nd 2008
     
    Thanks John. I tried the elimination last week and except for a couple mishaps-- vinegar in potsickers and a slice of pizza I couldn't resist-- I felt a lot better but still had outbreaks of eczema. Finally, I eliminated my morning black tea and I'm symptom free! My throat feels great and it's nice to be decongested. Just very tired due to caffiene withdrawals! And hungry-- god, I hope I don't gain weight . . . switched to organic sunflower oil and bought some ovaltine. Good advice to cook for myself as much as possible-- luckily I've always been a cook, but now I just can't have as much fun with spices and sauces. Happy to discover that the Kettle Sour Cream and Onion chips are saliclate free though because they are spiced with parsley! And at least I can still eat good chocolate. I'm positive I'm SS more than ever because after my pizza incident I got very hypoglycemic feeling, but after a cup of soymilk, I felt a lot better. The bloodsugar connection is a big thing for me I think. What a sweet daughter! Yum-- sponge cake!

    Rose
    • CommentAuthorRita
    • CommentTimeMar 2nd 2008
     
    Rose, I don't know why Ovaltine is on the no sal lists. It contains salicylates. Your best bet is to make water your best friend. But I know how hard it is to give up your vices. Been there, done that.
    • CommentAuthorrowen
    • CommentTimeMar 9th 2008
     
    Really? I thought the old-fashioned ovaltine was OK-- I'm not reacting to it . . .

    few questions for everyone: what's the word on corn syrup, cornstarch, and cornmeal?

    also, i've discovered that my gin and tonics sometimes throw me because of the tonic water! it has potassium benzoates in it-- so now i'm asking for gin and soda water . . .
    • CommentAuthorRita
    • CommentTimeMar 9th 2008
     
    Hi Rowen. Had to go back and do some refresher info to answer that question. Ovaltine contains maltodextrin which is often derived from corn, which is usually considered moderate in salicylates. Also, vanillian, which is an artificial food flavoring that many ss people say they react to. But if you can tolerate it, that's good, but if you are having lingering symptoms, you might want to put it on the suspect list.
    • CommentAuthorrowen
    • CommentTimeMar 10th 2008
     
    thanks Rita-- weird about the vanillin because I had a reaction to it in chocolate milk (storebought but organic with no cornsyrup-- only goofy thing was vanillin) so I know vanillin is a trigger. i am having symptoms still but my reaction to the choc. milk was so obvious-- maybe it's the ovalatine . . . thanks. So no corn syrup and cornstarch-- I thought so. This is so hard and so frustrating. It's a mystery though and I love to problem-solve. Still, I really miss being carefree about my eating . . .
    • CommentAuthorSal
    • CommentTimeMar 29th 2008
     
    Hi I'm Sally and I'm living in North Wales - though a native from England. My 17 year old twins are pure welsh and proud of it! My son has a diagnosis of ADHD and Asperger's Syndrome and is on a gluten free dairy free and salicylate diet. The salicylates were the last intolerant we found that affected his health and behaviour. When i withdrew tomatoes from his diet his faced swelled and reddened so much, it resembeld a tomato for almost 2 weeks! he wears a pollen mask in the summer as the salicylates in the pollens also affect him and he cannot take hardly any medicines - plain paracetomol on the odd occasion he is very ill with a temperature - though he has secondary ailments with this once he gets better. His school says they have never heard of a child with so many intolerances and I had great difficulties getting it even written on his statement.

    nice to meet you all - nice to know we are not alone! Sal
    • CommentAuthorSal
    • CommentTimeMar 29th 2008
     
    have you heard of the AiA diet? (allergy induced autism diet) this has a lot of stuff on intolerances and salicylates for everyone - not just those with autism? this with the Feingold diet has been the source of new life for my son - might have info for someone else out there too? :O)
    • CommentAuthorTEDDY
    • CommentTimeMar 29th 2008
     
    Hi Sal

    Just to say hi I am Teddy from Scotland and nice to meet you on the forum. I am sure you will find it as useful as I do and it is great to share info and experiences with each other.

    Take care
    Teddy
    • CommentAuthorRobbo
    • CommentTimeApr 7th 2008
     
    Hi,

    I am Robert from Australia. I started getting Chronic Migraines when i was about 11, and by age 14 doctors couldn't figure out what was wrong with me. And a close friend who suffers from ADHD suggested i visit a naturopath and they discovered I had a salicylate intolerance. Once visiting this naturopath and starting on a salicylate free diet, I went from migraines almost every second day to about 1 a month. Now i am 25 and with the help of this website i can somewhat carry on a normal life pain free.

    Thanks
    Rob
    • CommentAuthorTEDDY
    • CommentTimeApr 8th 2008
     
    Hi Rob

    Nice to find out about who you are and where you come from and your background relating to salicylates. Hope you enjoy using the forum and talking to all the members. I posted on the other posting about the migrane connection and salicylates. I am glad that you are so much better now and doing so well. It is like night and day not suffering from migranes any longer. I have the odd one but my life migrane wise has changed so much and I am sure it was salicylates and not migranes that were the issue for me. Interesting to talk to others who have been told same thing that they had migranes.

    Take care Rob and nice to speak to you in Australia from a cold frosty Scotland this morning

    Teddy
    Enjoy the forum
    • CommentAuthorsineadp
    • CommentTimeApr 14th 2008
     
    hi all,
    My name is Sinead.It is my son that is ss.We live in Ireland.From the minute he was put to my breast, i knew he was different than my other children. He was very cross and never slept, i gave up breast feeding him after a few weeks.Things then settled down untill he started on soilds at 5 months,he went back to been very cross and had a rash from head to toe with some open sores.When he was 9 months old we went on holidays and he went of his formula, so to keep him hydrated we gave him more fruit.He got much worse, so we took him of all fruit and by the time we returned home, he looked great and was in better form.
    We then went to think that he had a problem with wheat.We know realise that the products agreed with him as some not all are low in sals.
    our doctor at he time didn't believe that he had a food problem, that it was probably air born,i quickly left and moved to another.Our new doctor knew that there was a problem and sent us to see a pediatrician, but the test never showed up anything even though he also knew something wasn't right.He just gave antihistaminies,which did help.He was now at least sleeping the night.
    18 months went by, with us adding more things to the list that he was unable to have,then he had a really bad attack, and he ended up in A&E, and was given preventative inhalers for asthma.He went on two have to more bad asthma attacks with low blood pressure ,and we went enough,and kicked and screamed untill we were seen by an immunilogist.Within five minutes he knew what it was,and he's done all the tests and he's right.
    after one week our son has no rash , no cough.more energy!
    for years myself and my husbent were made to feel,that we were a bit mad by the medical profestion and friends.Its such a relife!
    I'm so happy but yet angry,four years my son has been in pain,and nobody in the medical profession listened!- because sometimes they just can't admit that there's things the still don't know!
  1.  
    Just thought I'd intro. myself. I've been reading the board a while...My name is Stephanie, I'm 33 and I'm in NY. I was diagnosed with Salicylate Sensitivity oh about 4 years ago. I'm sure it was going on much longer than that but no one could figure out why I had hives from my neck down. I would wake up covered in welts. Finally after seeing an allergist and my GP I was sent to a dermatologist who dealt a lot with Uticaria. He immediately suspected SS and put me on the elimination diet. I will be the first one to say I am the poster child of what NOT to do when you are SS. I'm horrible. I tried doing the diet but virtually was starving because I am such a picky eater. I know a lot of my triggers. I have switched to what I call tree hugger laundry detergent and fabric softener. I always do an extra rinse cycle on my clothes. I use only Aveeno lotion and Aveda shampoo. Don't use any other hair products otherwise the back of my head starts itching. I wear sal free make-up. I usually have hives everyday when I get home from work mainly where my socks sit. I try to stay away from pizza which is hard in my business as they bring in pizza all the time :) I am allergic to a lot of plants, pollens and animals...not just seasonal allergies. I take 2 benadryl every night prior to bed. But I think being SS makes my sleeping horrible. I just recently stopped drinking soda...whewww that was huge for me...I'm not giving it up but I wanted to see what happened. Nothing thought I would lose 5 pounds but no such luck! I generally get about 2-3 serious outbreaks of hives a year. I had my last in November when I bought my condo and there was something(mostly likely the previous owners laundry detergent) bothering me. I also get really bad hives when I'm sick(which I'm proud to say is only about once a year) When I have a bad break out I end up on a 3-5 day steriod treatment.
    I recently looked into NAET treatment and hope to try it. I got the book and found a place about 5 miles from my house. I just want to make sure I can go on a regular basis...the place I found charges an intial $250 and then $100 a visit after.
    Other than that like I said I'm the one you don't want to follow when trying to figure out how to control SS :)

    Alright this is long enough for now.

    Stephanie
    • CommentAuthorTEDDY
    • CommentTimeApr 30th 2008
     
    Hi Stephanie

    Nice to welcome you to the forum. Its not easy to stick to the elimination diet but you have to do it if you want to find out for sure that it is salicylates that is the problem. It is worth it in the end when you feel so much better if it is the sals that are bothering you. It is funny but I drank more diet juices that anyone in the world. I decided if that I want to get better then I will stick to what the elimination diet says and I did and I was able to give up e.g. the diet coke and diet irn bru so much easier than I could ever have imagined. My family thought I would stick to everything but not be able to give up my cans of diet juices that they felt I was addicted to. I have never looked back. Never even think about drinking a can of juice any longer and I only drink water, or limejuice made from Beth's recipes on the forum. I make it every week and if I feel like a treat I can use soda water instead of water to give it a bit of fizz which I did a lot at the beginning but now I am happy with plain old water. My skin isnt so dry since drinking more water so that has improved also.

    The NAET thing isnt something I consider but if people feel it works for them then fair enough. Whatever works for one person doesnt work for another and that goes for introducing salicylates as well we all react differently.

    The only thing I miss is oranges, strawbs and rasperries. But worth the sacrifice to feel better sals wise.

    Nice to have you on the forum Stephanie.
    Take care
    Teddy from Scotland
    • CommentAuthorRita
    • CommentTimeMay 2nd 2008
     
    Hi, Sinead, Rob, Sally and Stephanie. Glad you all decided to log in and share your stories. As I have mentioned before, every story and health history shared helps us all to understand our condition better. I hope you have all read the thread under "steps" to help you through this tough time. And I wish you all luck in grabbing a hold of your food vices and bringing them into control so that you can enjoy better health. Rita
    • CommentAuthorhannahg
    • CommentTimeMay 7th 2008
     
    Hello
    I’m Hannah and I live in Wales this year, but will be moving back to my hometown Coventry in a few months. I’m 21 and have had reactions for nearly 12 months now.
    I came across this site after my doctor recommended a low salicylate diet. After looking through the information provided by the doctor and marking off everything I 'couldn't' eat, which was practically everything I used to survive on, in order to be follow a low ss diet I panicked and goggled for some recipes. So that is how I found this useful site.
    Since my first reaction nearly 12 months ago, I have seen numerous doctors and also been to the allergy department of the hospital. I now have the diagnosis of urticaria and angioedema. My doctor recommended a low salicylate diet to try and elevate my symptoms. I have been following the diet for 5 weeks now and it has defiantly helped.
    When I have a reaction my face will usually swell, I cannot open my eyes and my lips begin to swell. My body is covered from head to toe with burning itchy hives and I feel generally unwell, bad headaches etc. For months I kept a food diary and tried to find my triggers as my doctors told me I had an allergy. However each time I had a reaction I could like now common foods or environments. I have sensitive skin so do not wear make up or use perfumed products so that eliminated one aspect.
    After being told about salicylate sensitivity I defiantly thought this could help my symptoms. In-between my severe reactions I would often wake up with my eyes feeling swollen or my skin being very sore or sensitive to warm water, I am now used to the cold showers, but I thought it may have been my imagination working on overdrive. Since following the diet my symptoms have reduced and it is so nice to wake up in the morning feeling awake without a constant headache or sore eyes.
    I have noticed that if I do eat something that is high in saliclates I now react quite quickly, whereas previously I probably would have reacted after a certain threshold. Typically suffering a bout of migraines, however that is what you get for not sticking to the plan!
    One thing I do struggle with is packed lunches for work, as I don’t like eating sandwiches. I have relied on home made soups during the last few weeks; however now the weather is getting warmer it isn’t the best food. Anybody have any ideas or recipes?
    Glad to have introduced myself now and hope to become apart of this community!
    Thanks
    Hannah
    • CommentAuthorTEDDY
    • CommentTimeMay 7th 2008 edited
     
    Hi Hannah

    Nice to welcome you to Beth's forum. I am Teddy from Scotland. I am glad to hear that your elimination diet has helped you. Your symptoms also sound like a severe allergy. Have you had tests done [skin prick and or patch testing]. Like you I suffered terrible debilitating migranes almost 3 times a week + since cutting out the sals and then on low sal diet I am happy to report a migrane has not occured. I still get the odd headache and it is funny after all these years of suffering such awful migranes I now have what I term 'a normal headache'. I am sure your migranes will cease if you stick to the low sal diet. It has really worked for me. Sals wise it is like night and day for me. I have changed so much. Wish I was doing so well with other health issues but there you go.

    The swelling of face and eyes and lips definitely sounds like an allergy over and above your sals sensitivity/intolerance. At least your doctors managed to tell you about being salicylate sensitive and that is a good sign at least you have managed to find this site and like you I felt alone and isolated before coming across Beth's forum and all the members on the forum are a great help to everyone. Nothing is a stupid question on this forum I used to be worried about asking questions but you find out that all of us have been where you are and someone can always come on and answer any questions you may have. So feel free to ask the questions and see what the other members have to say.

    If nothing else it is a sounding board when you can let it out how you are feeling etc whether you are having a good or bad day its a good way to vent your feelings and dont feel alone as there is always someone to share things with on the fourm.

    I eat very little myself but if you are through your elimination diet have a look at the low sals part and just pick bits and pieces. Now I have romain lettuce, I can also tolerate some white cheeses [I know not everyone can] that is what I also meant to say what suits one member doesnt necessarily suit another and it is trial and error. I can have banana, I also tolerate green apples, I also manage to have sunflower seeds, pumpkin seeds, also I am now eating oatcakes which suit me personally, I can take allinsons brown bread, I have just started to introduce makerel [an acquired taste] I never used to like it before but now I know I can tolerate it I am happy to eat it as I eat so little. I am not too good with eggs but it is a change if you boil an egg and eat it with your romain lettuce. I only take that very occassionally as I dont know why but eggs arent too good with me. I can take basmati rice which you can also have cold at lunchtime and just really mix and match what you find on the low sal list that suits you.

    I dont have recipes as such. I can also tolerate bacon but again not everyone does so you can have bacon for lunchtime either hot or cold if you can tolerate that and the brown bread.

    If you keep your food diary and just try introducing one thing at a time then see what you can tolerate and what you react to and then cut it out. You will gradually build up to a little more. On saying that I dont ever feel hungry so although I have listed all these items I dont eat them all at once!!!

    Try to find a cracker that suits you if you can tolerate them. Also I emailed krisprolls as they are I think Scandanavian and they are really nice I can tolerate them. Worth a try. What I try to do is email a company if I am considering trying to eat their product and see what they come back with. A lot of food companies have highly paid nutritional experts and I know that krisproll sent me a very detailed email at the time. Something to consider.

    I have other allergies and intolerances and I cant have cinnamon, sulphites, etc and you would be amazed the amount of things that cinnamon is in. You get used to eating very little and finding out what suits you personally. It is a case of trial and error and I am sure other members will have more advice to give you. Rita will be able to give you excellent advice about more indepth things relating to salicylates.

    Any posting you put on someone will have some good information for you.

    Nice to meet you Hannah and good luck with your low sal diet.

    Take care
    Teddy x

    p.s. forgot to add pears, cold cabbage is nice to make a salad it gives a bit of crunch to the romain lettuce mixed in, shallots which I dont really like but are okay for me, poppy seeds, hazelnuts now and then and cold chicken.

    The best thing I like from Beth's recipes is the limeade juice. I drink gallons of the stuff but I cut the sugar down to unrefined sugar and to the bare minimum just to give the water a taste. I now drink lots of water and that is important and I make up the limeade into a big bottle and use it like you would do a diluting juice. It is really lovely served with lots of ice and a twist of lime at the top. I am addicted to it. I have other health problems at the moment that is making me more thirsty than I should be and that is why I drink so much of it. That and then just plain water in between.

    Take care
    Teddy x
    • CommentAuthorKazza
    • CommentTimeMay 11th 2008
     
    Hi All My name is Karen,I live in Brisbane Australia, my son who is 8 is the one who is sensitive to salicylates. I have been on a long journey trying to understand my sons odd unaccepatable behavour. When I discovered salicylates just under a year ago I could not belive it and as I learnt more I have realised that I knew from when he was around 9 months just did not know about it. I knew certain things set him off he would fly around the room and I knew some medicines with a particular ingredient would not work and make him hypa. He had problems with milk protien as a baby and to find food for him I had encouraged fruit loads of it ( he was a big eater) I have struggled with him for years and I was at the stage of dispair when I remembered a story I was told of a child who had behaviour issues caused by apples my son was eating up to 6 apples a day so I said no apples for one week it did not take long to see the difference 48 - 72 hours a different child and improves all the time untill he decides to eat the wrong foods. I hoping to find a specialists at the Allergy convention this weekend so I can give him a list in black and white this is what you are allowed to eat.
    • CommentAuthorRita
    • CommentTimeMay 11th 2008
     
    Hi Hannahg. When I am going out for a long excursion, I will take some already prepared bacon or chicken. I also take a baked potato that I can just eat cold. You might want to try ordering something from a fast food restaurant that you think might be low sal and see if you can tolerate that. Ususally, fast food restaurants offer chicken salads that you can eat in a pinch. Or just wrap up left overs and take those for lunch, as long as you have access to a microwave.

    Hi Karen, if you do not find someone who can help you, there are lots of lists you can access from this site that will give you the information on salicylates in foods that you are looking for. You can start with the "Food Guide" page on this site.
    • CommentAuthorlindyd
    • CommentTimeMay 11th 2008
     
    Hi Karen
    Have you looked into the Feingold Diet yet? It is designed particularly for children. It eliminates salicylates and also certain food dyes and additives.
    If you are not aware of it if you Google Feingold you will find it.
    Also if you are going to an Allergy convention there may be people there who know about it.
    HUGS Lindy xx
    • CommentAuthorTEDDY
    • CommentTimeMay 11th 2008
     
    Hi Karen

    At least you have found what you think is causing your son's problems and that is a good start. Hope you find the right help at the allergist convention you are about to attend and like Rita says if you think it is sals that are causing it you can learn lots from the forum.

    Take care
    Teddy
    • CommentAuthorAlan
    • CommentTimeMay 18th 2008
     
    When we were weaning our new daughter at 5/6 months, there appeared to be certain foods that made her violently sick. After 2/3 months of getting nowhere a dietician suggested salicylate intolerance. Since then everythings been fine. She's 15 months now and we're hoping that she'll become more tolerant as she gets older.

    I do believe there is a strong genetic cause to this intolerance; I have MSG intolerance. One thing that I've read is the stromg link with an imbalance in human parasites. My brother developed ulcerative colitis and can definitely link it to when he took worm tablets. Maybe the future of this line of investigation may help some? See http://www.news-releases.uiowa.edu/2004/may/052104worms.html

    Oh, we live in the east of England and love curries. I suppose with this intolerance, all spicy food is out?

    Good health
    Alan
    • CommentAuthorlindyd
    • CommentTimeMay 18th 2008
     
    Hmm Alan
    I have just read this up on Wilkipedia...
    http://en.wikipedia.org/wiki/Helminthic_therapy
    ....sounds like something out of the Alien films!Not sure I would like hookworms put inside me lol!
    It does sound like it is working for some people though. I guess it gives the body's system something to fight rather than itself!
    I am researching all angles at the moment... I am convinced that my grandsons Aspergers is related to my Sals/sulphite problems , he is reacting really badly to food colourings at the moment, and also that all the ill health problems my mother has acquired as she has aged are part of the same inherited problem.
    The other angle is environmental.. I have recently had a big increase in sals/sulphites symptoms but my husband has suddenly aquired Rhuematoid Arthritis out of nowhere... in the last year we have had a new gas boiler and new (treated) leather furniture. I guess either of these could have had an environmental effect. The Boiler is not giving off carbon monoxide I have a digital monitor near it and also a little visual one. The furniture.... well I don't know...
    My belief is that we inherit it but it is triggered by environmental causes and lifestyle.
    Still don't fancy the hookworms lol!
    HUGS Lindy xx
    • CommentAuthorlindyd
    • CommentTimeMay 18th 2008
     
    Extremely high
    Allspice, aniseed, black pepper, cardamom, cayenne, celery powder, cinnamon, cloves, cumin, curry powder, dill, fenugreek, garam masala, ginger, liquorice, mace, mint, mustard, oregano, paprika, rosemary, sage, tarragon, turmeric, thyme, wine and cider vinegars

    Very High
    Basil, bay leaf, caraway, chilli powder, nutmeg, vanilla essence, white pepper

    High
    Yeast extracts.

    Low
    Fresh coriander leaves

    very low
    Fennel - dried, fresh parsley

    safe
    Malt vinegar, saffron, sea salt, soy sauce (if free of spices).

    If you are also suphite sensitive vinegar is out and so are ANY dried herbs they use sulphites
    HUGS Lindy xx
    • CommentAuthortukwut
    • CommentTimeMay 23rd 2008
     
    Hello all,

    I joined the forum awhile ago, but life got in the way and I haven't read and participated until today. So, I thought I should continue to read up and participate.

    My name is Terri, but everyone calls me Tuk. I'm a 38 year old working wife and mom to 2 kids. I'm currently working nights. I am a self diagnosed SS. I have a difficult time getting doctor's to listen to me as they all assume it is in my head. Example, I had an inguinal hernia for 9 months before I found a doctor to believe me that the pain I was feeling was not in my head. So, doing research, with the help of a friend, I found out about SS and it really fits. I've had the symptoms all my life and the symptoms have gotten worse over the years. I need to start working on changing my diet now to give me back the energy and my body back. I'm so tired of being tired, feeling sick and being itchy all the time.

    Anyway, pleasure to meet everyone.
    • CommentAuthorlindyd
    • CommentTimeMay 23rd 2008
     
    Hi Tuk
    Welcome to the forum.. looking forward to chatting with you.
    Do make sure you spend some time reading back on posts... there are a lot! I have only been around a while and am still reading !
    I also had doctor problems.. she treated me like a total head case when I went to her with self diagnosed sulphite (sulfite) problems.. but she did condescend to send me to an allergist at the hospital. I attended the appt and saw a really nice switched on young allergist who did lots of skin prick tests (which were negative) and discussed my problems with me and treated me like an intelligent adult. I then went back to my doctor with a hospital diagnosis of salicylate and sulphite sensitivities and an epi pen... she did not like it one bit and wrote "unknown allergy" on her computer LOL.
    I don't go to see my useless doc now about my sensitivites I just get her to prescribe a repeat prescription for antihistamines and manage my diet myself.
    What is wrong with these doctors??? I am on a few forums and everyone is doctor problems. I guess they are just not trained in anything other than "classic" allergies like peanut etc and don't seem to understand anything about sensitivities and intolerances.
    I am sooo much better now I am managing my diet... I thought I was dying at one time. I get tiredness and itching from the salicylates but the sulphites make me feel scarily ill and toxic.
    You will find a lot of support and info here...
    HUGS Lindy from England (54 with 2 grown up girls and 5 grandkids including one with Aspergers .. which incidentally appears to be related to sulphur and ss etc.)
    • CommentAuthorRita
    • CommentTimeMay 23rd 2008
     
    Hey Tuk, glad to have you on board. Definitly go straight to the "Step by Step Suggestions" here on the forum. They are a compilation of all our pulled knowledge and experience and will help to begin you on your road to more energy and increased health. Ya, they thought I was crazy and overstressed too, even my husband, but the only clinical thing wrong they could find with me was blood in my urine, so they paid some attention. Well, it's gone now, but I had to help myself. We are our own primary care providers, and if we are lucky, our doctors help us along.
    • CommentAuthorrachelb27
    • CommentTimeJun 25th 2008
     
    Hi there, my name is Rachel, I'm 27, and I've had Samter's Triad since I was 17. The nasal polyps are a killer! Lately my asthma has been out of control as well landing me in the ER. I am very interested in reducing/eliminating salicylates from my diet, you all know how it is when you eat a plate of spaghetti with Ragu sauce with canned mushrooms and you can't stop sneezing after, with the asthma flaring up and the polyps swelling. Let alone if you put some pepper on it!! Stand back people severe reaction over here!!!

    I have had two surgeries and am coming up on another scheduled one. The polyps are so enormous now that it is recommended to have them out again. I am so excited to perhaps help them stay small when they come back by reducing/eliminating salicylates. I am about 99% sure this is my issue. Benedryl does help, but as I have read it sometimes makes it worse before it makes it better (i.e. taking some Benedryl and sneezing/reacting violently to it!). I take Singulair, beclomethasone spray, Advair, Salbuterol, etc, I would like to start trying Zyrtec instead of Benedryl (I have a three month old and need my energy!).

    I love to eat, so this will be hard for me, but I think I can do it because I love protein and it looks like the non-prepared proteins are safe :)
    Looking forward to getting to know you guys! Oh yes, I do have a question, I am planning on going back on the birth control pill, it clears up my skin so nicely, but it is going to undermine my effort sat eliminating salicylates in your experience? Thanks!
    • CommentAuthorTEDDY
    • CommentTimeJun 25th 2008
     
    Hi Rachel

    Nice to welcome you to the forum. Sorry I cant personally answer your question relating to birth control but I am sure some of the other members will be able to give you advice on that.

    I was interested to hear you take singulair as I do to. I cannot breath without it. I have tried to stop taking it on a few occassions but when I wake up I cant breathe properly in the mornings. After it has been taken about 10-15 minutes later I feel more human and can breathe easier.

    If you thinks sals are an issue if you follow the elimination diet and keep a diary [there I go on again about the diary but it really is a must]. Write down what you eat, what you were doing, where you were, who you were with, products you used etc etc aromas, smells you took in that kind of thing] this will show up if sals are an issue for you.

    Good luck if you decide to start the elimination diet and good luck with your forthcoming surgery hope it works better for you this time and the dreaded polyps dont return again.

    Take care and nice to speak to you on the forum.
    Teddy