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    • CommentAuthorlindyd
    • CommentTimeJun 25th 2008
     
    Hi Rachel
    Welcome to the forum you will find a lot of info here to help you on your new low sals diet...sorry to hear about your horrible nasal polyps.. I hadn't heard of Samters Triad.. I have now looked it up so am better informed!
    I also am not going to be able to be too helpful about the contraceptive Pill....I took it for years but have been off it for about 4 years now....I do know that estrogen has to be sulphated in the body and this is happens with estrone-sulfur-transferase rather than phenol-sulphur transferase (which is the enzyme that sulfates sulphur and phenol ) but that is the extent of my knowledge.. perhaps Rita knows more ?? she has been researching for longer than me !!
    I take zyrtec (cetirizine) and get on fine with it. I have taken it for years.
    HUGS Lindy xx
    • CommentAuthorRita
    • CommentTimeJun 25th 2008
     
    Hey Rachel. According to my research, the pst pathway that detoxes salicylates/phenols also has the responsibility of detoxing one of the estrogens, namely estradiol which is considered a phenol. It is found in dairy products and birth control pills. So if you are taking birth control pills that contain estradiol, then you will surely be adding to your problems. Not to mention the estrogen imbalance it throws your system into making you more susceptible to yeast infections which also compete for the sulphate your body is in lack of. Birth control pill, bad idea for ss. If you follow the "Step by Step Suggestions" you will very likely end up with a clear complexion anyway. Here to help, Rita.
    • CommentAuthorrachelb27
    • CommentTimeJun 27th 2008
     
    Thank you so so much guys!! It is so nice to be able to talk to people that don't think I'm crazy! My stepmother used to make fun of me because I would cut a tylenol in half and take one half then later the other half, to try to reduce my reaction to it (which I now know is common for a milder reaction to Tylenol to occur with SS, Samter's Triad etc.) Why do people find it necessary to question us when we know our bodies better than anyone else? Thank you so much Rita for the info on the BC pill, I thought I had read that somewhere, so I think I will hold off on that but that won't make my boyfriend happy lol. I hope my skin will clear up as I embark on my low sal diet, it is ridiculous I have had bad skin since I was ten and it's been seventeen years! I am doing my next grocery shopping based on a bunch of the recipes from here next Wednesday!
    • CommentAuthorginny
    • CommentTimeJun 27th 2008
     
    Hi
    I'm Sally... was diagnosed as having salicylate allergy about 6 years ago.
    One day I woke up with slightly itchy feet. By recess (I was a teacher) they were quite swollen and sore to walk on. By lunchtime it was agony. I had taken an antihistamine but it did nothing. My feet were so swollen my toes sat about an inch off the ground. My hands were also swollen and painful, but my feet were the worst, it was like walking on shards of glass.
    So, off to RPA casualty where they cut rings off my fingers...told me take some cortisone and sent me home as I wasn't sick enough to stay. Back to my GP the next day and the pain was still severe. He had no idea. This condition lasted in various states for about 4 weeks with me going back to my doc about once a week to complain that it was still the same.
    He did some research and pinpointed the cause (bless him!!) Seems the blood pressure meds I was on reacted with the allergy sensitising injections I was having and the aspirin I wa staking as I had had a blood clot in my leg.
    SO finally something was done...visit to allergist, list of things to stay away from and twleve months on double dose antihistamines.

    It all calmed down, and I must admit I have not stuck to the diet. I know..bad girl.
    Now I have various symptoms including asthma, excema, various transient swellings and itchies and also severe stomach pains. Looks like its back to being vigilant!
    Glad I found this site as I need help!
    • CommentAuthorlindyd
    • CommentTimeJun 28th 2008
     
    Hi Welcome Sally!
    Please you found us..it's always good to have someone new to contribute and I am sure you will learn a lot here.Sorry to hear of your problems but you will find a lot of support here.
    It's a bit quiet today.. probably because the sun has been shining but I'm sure everyone else will appear again soon!
    It is horrible having to stick to the diet I know... unfortunately I feel so bad if I don't I have no choice!!
    I find it is worth it to feel well. I do long sometimes for some of the things I can't have though. I recently ate some "allergy free cake" I bought from the Olympia Allergy show. If was "free from" many things but unfortunately not free from corn... I really paid for it and my stomach is only just recovering.
    It did me good though and reminded me not to cheat!
    Do ask any questions you have.. someone will pop and answer..you may get a few different suggestions sometimes as there is not always a definitive answer but at least you will get some suggestions and support!
    Hope you enjoy the rest of the weekend
    HUGS Lindy xxx
    • CommentAuthorTEDDY
    • CommentTimeJun 28th 2008
     
    Hi Sally

    Nice to meet you and welcome to Beth's forum. Like Lindy said there is always someone to talk to here or answer your questions or just to listen and you know that someone else understands what you are going through.

    That must have been very scary having a blood clot in your leg. Hope it is all okay now. I am laughing at Lindy thinking we are not on the forum due to nice sunshine. Oh how I wish Lindy. As usual pouring with rain, mist and fog here in Scotland and it is meant to be summer.

    If you do have some sunshine send some up to us please.!! Unfortunately Sally the only way to keep everything A okay is to stick to the diet. I for one am happy to stick to it as sals wise I am so much better. I was also reading in another heading Rita talking to someone about thier skin. I have never had bad skin even when young but I had terrible dry skin and now on my sals intake I have beautiful skin except if I get dreaded hives from my other allergies. So right now my skin is amazing. It is so soft and healthy glowing. I hadnt really thought that this was anything to do with my sals intake but as Rita mentioned this it most probably is the reason so for me the sals intake is good for me. You will get there.

    Nice to meet you on the forum.
    Take care
    Teddy x
    p.s. the one good thing about this forum is there are lots of people here to help you out
    • CommentAuthorlindyd
    • CommentTimeJun 28th 2008
     
    OK Teddy.. sunshine on its way up to you tomorrow.. don't blink though or you may miss it!
    It has been quite warm here.. I actually took my jacket off today. We went to the local Car Boot sale this morning. I sell things on ebay and am getting desperate for some stock as the weather has been so bad a lot of the car boots have been cancelled recently.
    HUGS Lindy xxx
    • CommentAuthorTEDDY
    • CommentTimeJun 28th 2008
     
    Oh Linda wish I could have been to a car boot sale today. Maybe we have come across each other on ebay. I buy things from ebay but I have to stop as I have no where to put them. I used to have an antique shop so my house is full of bits and bobs and I really need to have a clear out. Just cant motivate myself to do it as I cant part with things. Bit of a hoarder. Waiting on our loft falling down on top of us as it is full to the brim. I have my own portacabin just to put goodies in and idea was it was for me to potter about in and try to sort things out to get rid of. Needless to say I just keep putting more and more stuff in and now I cant even fit in it or find the chair I was meant to sit on!!!! If weather is nice tomorrow we want to get some gardening done and dare to open the shed up and hope nothing falls out he he!!

    Look forward to the sunshine you are sending up to me Lindy.
    Take care
    Teddy x
    p.s. Have you heard of Blocairn Car Boot Sale in Glasgow. I used to go there but I can never be bothered getting up early enough to go also if I go I just buy things I shouldnt!
    • CommentAuthorlindyd
    • CommentTimeJun 29th 2008
     
    Hi Teddy
    I've not heard of the Glagow Car boot. We went to the one on the seafront here this morning. I had to get up at 5.15 am as it starts at 6.30 and we had to collect my daughter and grandkids first.
    Nice and sunny and I got a few things to sell on ebay but not as much as I would have like to get. There are far too many people buying to sell now.
    Hope the sunshine reached you.
    HUGS Lindy xx
    • CommentAuthorTEDDY
    • CommentTimeJun 29th 2008
     
    Hi Lindy

    We had sunshine for about an hour and then the heavens opened. I could never get up that early to get to the boot sales and your grandkids must be great if they can get up at that time. Glad you managed to pick up some bits and bobs. Hope you manage to make a bit of a profit. It is good fun though. I do miss having my shop but I still know lots of good friends I met through antiques. Do you ever go to auctions. We have quite a few auctions but best if you are buying privately for yourself and not for selling on as you say so many people are trying to do this now especially with ebay being accessable to all. Antiques are in my blood as its passed down through generations of antique shops so I am quite knowledgable about antiques. Its just fun for me now as I dont have the shop but I try not to buy things as I really have no-where to put them. My son collects vintage cars and real ones! and loves old american cars. My daughter collects antique teddies mostly steiff and british makes. I was lucky enough to meet the grandson who was the owner of merrythought who recently ceased trading such a lovely man too and managed to get my daughter some merrythoughts directly from the man himself Oliver and she treasures them. We met at the Toy Fair at Excel in London as my husband is a games designer.

    Too many things I collect to even start to tell you what I have. I still have an antique cabinet in an antique centre but never get down there enough to keep changing things over. I really need to get down and change things around. It is more like a storage space for me he he!!

    It is a good pastime though Lindy and I hope you are successful.
    Take care
    Teddy x
    • CommentAuthorkylee
    • CommentTimeJul 13th 2008
     
    Hello. I just found this website and am so grateful! My name is Kylee and I live in Anchorage, Alaska. I am here because my 7 year-old daughter, Mia, has, I'm certain, an allergy to Salicylates. We were in China adopting her 3.5 years ago when I first notices the little hives. We knew from her medical records that she is allergic to penicillin. At the time I thought she had scabies which is quite common in the orphanages. When we brought her home I had her tested for everything...except allergy testing. All tests came back clean. About that time I learned that hives can also be triggered by the nervous system. Both my husband and I thought for certain that was it....she tended to break out in hives when she was in an environment that made her feel insecure. We were seeing a pattern. So, we treated the hives with antihistamines when they were really bad...about once a week. As time went on her hives were becoming less frequent but were still showing up on occasion. She has also been very hyperactive since we got her. I chalked that up to her coping with her insecurities. She had been through so much. Imagine being adopted by strange looking, smelling and sounding people at 3 1/2! Anyway, I finally got smart and took her in for allergy testing. (Hello!? If she's allergic to penicillin, she's probably allergic to other things!) Bingo! Allergist prescribed singulair and gave me info. for her diet. 13 months ago I put her on a salicylate-free diet for 4 weeks. Her symptoms disappeared! (she was still hyper tho) At week 5 I gradually let her start eating whatever she wanted-except for mint candies and gum and she had been doing great over the year... until last week when the hives resurfaced. Also, with the hives came increased hyperactivity and less self control. So, tomorrow we are starting the Salicylate-free eating again. I am wondering...why didn't she have symptoms for a year when she was eating anything she wanted (except mint)? Do salicylates build up in the body? Thanks everyone and greetings from Alaska!
    • CommentAuthorRita
    • CommentTimeJul 14th 2008
     
    Kylee, Greetings from sunny Southern Cal. I have found a persons degree of saicylate sensitivity is very related to the immediate health of their immune system. Perhaps the time away from salicylates strengthened her immune system and increased her ability to handle more salicylates. But as you added salicylates back into her diet, it slowly began to depleat her defenses, or perhaps she had a round of antibiotics within that time which would also cause a weakness in her immune system. Social stresses could also add to immune system break down and be a trigger for ss.
    • CommentAuthorIrishRob
    • CommentTimeJul 15th 2008
     
    Hi Everyone!!!

    My name is Rob and I come from Cork in Ireland. Are there any other Irish on here???

    I have an allergy to Anti-Inflammatories,asrpin and as a result Salicylate!!!BOOOOO. Is this different to an intolenece???

    Anyway hello to everyone. I will be looking through all the posts with a great interest. And hope to contribute aswell!!

    Slan for now
    Rob
    • CommentAuthorlindyd
    • CommentTimeJul 15th 2008
     
    Hi Rob
    Welcome... enjoy your reading.. it took me ages to trawl through the back Posts when I came here.. it was worth I as I learned a lot so keep reading!I am in England...
    With regards to the difference between an "allergy" and an "intolerance/sensitivity" the usual interpretation is:
    When the body meets an "allergen" (antigen) it reacts by producing antibodies against the substance which it sees and an invader. There are an number of different antibody responses but the main two are IgE and IgG.The body also produces large amounts of histamine which is what causes most of the symptoms we feel.
    An "Allergy" is an IgE antibody response and can be detected by skin prick tests and IgE antibody blood tests. "Allergy" reactions are extreme and fairly immediate (within a few minutes or within an hour at the most) and are often life threatening (eg peanut allergy). These are the "allergies" recognised by the medial profession and are normally treated with an immediate dose of anithistamines and administration of an epipen. IgE Allergies are for life.

    An"intolerance" or "sensitivity" does not involve IgE antibody reactions... and cannot be detected by skin prick tests. The reaction comes from IgG antibodies in the bloodstream or possibly IgA antibodies in the intestines. Symptoms can be mild or extreme and are sometimes referred to as "False Allergy" (this does not mean that they are not real/genuine it means they are not an identifiable IgE allergy!) Symptoms can be skin problems, gastric problems, IBS hyperactivity, lethargy/fatigue, headache, facial tics, oedema, asthma, breathing problems etc etc etc.....
    The "medical profession" does not test for IgG antibodies (in fact many refuse to believe that Intolerances exist )but tests can be done privately through York Laboratories or the like..
    IgG Intolerances/Sensitivities can cause anaphylactic like reactions in the same way as Allergies (I have been issued with an epipen by the hospital as I have anaphylactic like reactions to sulphites/salicylates ).
    It is possible to have an "Allergy" and an "intolerance".. it is possible that you are Allergic to Aspirin and NSAIDs but Intolerant/Sensitive to salicylates in food...(ie reactions from both IgE and IgG antibodies).
    IgG intolerances can sometimes be "forgotten" by the body if the substance is not consumed/encountered for around 4 months when the body decided that there is no longer a threat..
    To complicate matters some people appear to have a genetic tendency to certain Sensitivities/Intolerances which can be "triggered" by certain conditions .. candida, leaky gut, overuse of NSAIDs, antibiotics etc.....
    Some of us are doing a lot of research (we are getting almost no help from our doctors/allergists other than drugs!).
    I am studying Nutritional Therapy so any research /information you find out would be helpful....
    Please ask any questions you have.. we will all be happy to help.
    Lindy xx
    • CommentAuthorTEDDY
    • CommentTimeJul 16th 2008
     
    Hi Kylee and Irish Rob

    I am Teddy from Scotland. Welcome to Beth's wonderful forum and I hope you find lots of information you didnt have before and meet lots of people who know and understand what you are going through.

    To Kylee - I wouldnt think you would be able to take salicylates for a whole year and then have them build up to a reaction. However as Rita says everyone is different and we all react differently but yes sals can build up and then reactions can happen. The hives can be in relation to allergies as I have both allergies and intolerances it is sometimes difficult to differentiate where the symptoms are coming from and I recommend [here I go again] about how important it is to keep a diary. It lets you see patterns developing and then it is easier to pinpoint what caused the reactions or in your daughter's instance the hives. It is like a jigsaw trying to fit all the pieces together. If you keep the diary it helps you to pinpoint the culprit/s. I do get hives as a reaction to my allergies but I also get hives if I have built up an intake of sals. Thankfully sals wise I am doing okay just now. Hope you enjoy the forum Kylee and get to the bottom of what is causing your daughter's hives. Remember its not just about food intake its about things we can be affected from environmentally, people, things we touch, things we breathe in, aromas we smell e.g. from other people perfumes, deoderants etc, shampoos and washing powders we use etc etc so all products. From other people, aromas we intake etc etc the list is endless I know but it helps to keep a diary.

    To IrishRob

    As I said I am Teddy from Scotland and glad that you have found the forum and look forward to your input at a future date and good luck catching up on all the postings. Like Lindy said she has given a wonderful description of the difference between allergies and intolerances. Most people tend to call everything an allergy but I have allergies and intolerances and although my intolerances e.g. sals dont give me anaphylactic shock like my allergies do they are nonetheless just as important and cause me just as much pain and suffering as the allergies do.

    Hope sals wise you find lots of good information on here and meet lots of new people and the good thing is we all know what each other are talking about and it is just nice to come on the forum and share things and we know others know exactly what we are talking about and how we are feeling - both good and bad times.

    So Hi to both of you
    Take care
    Teddy
    • CommentAuthorIrishRob
    • CommentTimeJul 16th 2008 edited
     
    Thank you Lindyd and Teddy for your great posts. I feel very welcome . Thank you. Ya my GP and Consultant were not much help either. I did most of the research myself on the net.

    Thats why this forum is great. Great idea!!

    I dont have things too bad once I avoid high sals but drugs are a no no and I can get a serious reaction to them.

    Rosehips in a Vitiman C tablet caught me out years ago. Got quiet a bad reaction. I stick with Absorbic Acid now.

    Talk to ye all very soon

    Rob
    • CommentAuthorTEDDY
    • CommentTimeJul 17th 2008
     
    Hi Rob

    Glad to welcome you to the forum and I am sure you will get lots out of it as you say you end up being your own expert as the so called 'medical professionals' know very little about allergies and intolerances and not many people know what the word salicylates is.

    Speak soon
    Teddy
    • CommentAuthorjuju
    • CommentTimeJul 21st 2008
     
    HI everyone,

    i recently started to use this website.. and introduced myself in the "organic Food" thread....
    I was wondering how many of us "are on feeding" ourself on this great resource website?
    it is difficult to comprehend how come there are so little resources/knowledge out there on SS...

    it is a true blessing to have found the forum.. thanks to everyone who contribute and share their stories and tips on how to better live with SS

    Julie
    • CommentAuthorTEDDY
    • CommentTimeJul 22nd 2008
     
    Hi Julie

    Like you say I was so grateful to find this forum. I thought I was the only one who has sals issues until I found the forum and all the members on it have helped me greatly. I could not have coped without them all.

    There is little knowledge out there of ss here in UK because the so called professionals think our allergists are not real doctors! I have been told this by a medical professional and that most doctors you speak to have never heard of salicylates intolerance or sensitivity.

    We all have to become our own experts in how our ss affects us and how best we can cope with it. I know that I could not have got to where I am today without all the help and information on this forum from everyone who posts.

    Thanks everyone on team sals.

    Hope you get on well Julie and manage to read your way through all the topics.
    Teddy
    • CommentAuthorbeckyg
    • CommentTimeJul 23rd 2008 edited
     
    Hi All,

    This is the first time I have read this forum (or any forum) and the first time I have ever made a comment but reading all you comments is making lots of things fall into place. I have very recently been diagnosed with salicylate intolerance after I started getting constant itchy mouth and sometimes feeling like it closing up. About 8 years ago I went for a food sensitvity testing and was told I was low in B12 which was odd as I knew I ate alot of food with B12 and had B vitamins too. I went again 4 years later to be told I was yeast intolerant, and tried very hard to cut it out but I am afraid to say it is just too hard!!! At the same time I had very bad rashes (like heat rash) but all the time even when I was cold and also if I lightly scratched myself it would stay for hours. No one knew what it was! I went everywhere! It gradually stopped and now another 4 years later I am rashy again! this time its different, I have very itchy legs all the time. My Mum tells me as a baby I was constantly rashy and the doctor said it was because I had an inability to sweat properly! I have in my past also suffered from Chronic fatigue syndrome and depression. Looking back on everything I think it is possibly salicylates all along. The problem is I can't do the exclusion diet. I just have no will power! What do you eat for breakfast?! I get to 2 days and think oh sod it I would rather have an itchy mouth than eat like this!
    I know what I have to do but trying to do it is just so hard. I admire you all for actually eating right.

    Any helpful hints appreciated!

    Becky
    • CommentAuthorlindyd
    • CommentTimeJul 23rd 2008
     
    Hi Becky
    Welcome! Oh the itchy legs.. funny how its the legs isn't it... I could never work out why my legs itched.. until I spoke to my first Sals sensitive person online (on another board) and she mentioned without prompting from me her itchy legs!
    I am pleased to say that my legs hardly ever itch at all now...High (and even moderate sals) foods make my legs unbearably itchy.. also wheat and SUGAR!
    I also have the "scratches that stay for hours when you lightly scratch yourself" it's called dermatographism (literally ability to write on the skin!). It is caused by the skin being over sensitive and releasing too much histamine.. Mine is always there but much worse when I am reacting to foods/chemicals.
    I think the need for someone to restrict their diet is very dependant on how had the reaction is.. I went years and years with just itching and although it was annoying I too antihistamines and it was not too unbearable just annoying.
    Last summer my problems really took off to the point I felt really ill and started to get anaphylactic like reactions.It was a that point that I went on the elimination diet.. I would have stopped eating if it had been an option.. I was so scared and ill....the fear of a bad reaction brings will power! I am still on a very very restricted diet and never eat anything processed... no cakes, sweets, chocolate, wheat products.. my beloved raspberries, strawberries.. but at the moment it is preferable to the reactions I get. ...it is not will power at all.....it is a necessity for some...
    It is a very personal decision whether to go on an elimination diet depending on your symptoms...It is definitely the best way to find out which foods you are reacting to and which you ar able to tolerate.. but I agree it is very very hard...
    An easier way for now is to keep a Food Diary.. (Teddy will confirm this.. it is one of her pet subjects!)...you must write down everything you eat each day and also any symptoms you get... Remember that reactions can take up to 48 hours to show so you will need to check back over the last 2 days each time you get a reaction.. (mine are 6- 12 hours), occasionally I get a quicker reaction but that is from the sulphites I also have problems with..
    If you have a possible yeast intolerance it is possible you are having Candida Yeast problems.. we talk about this a lot here.. I am at the moment taking probiotics...you may also find doing this is a help.
    Have you tried cutting out wheat? I fought against it for a long while as I loved my toast and wheat foods but sadly to say when I cut it out my leg itching went as well!!
    Do you eat a lot of sugar? Sugar feed intestinal yeast...and again sadly sugar makes me itch!
    Sugar and Wheat are the two things I would suggest you suspect along with the sals!
    HUGS Lindy xx

    Hi Julie, Hi Kylie, Hi Sally!!! Welcome...
    • CommentAuthorRita
    • CommentTimeJul 23rd 2008
     
    Hi Becky. I definitly agree with Lindy. It's not will power at all, but the negative associations of pain that go along with the food. When your body has had it, the nuisance symptoms will turn into pain and your body will take on the autopilot position, naturally steering you away from food that causes you distress. I hope you never have to come to that place. I have found that personal products are at least 50% of the problems. Try going a la natural for a few days to see if that helps. No makeup, no lotions, no soaps, no toothpaste. I bet you will feel different. And probiotics are a must. Glad you logged on.
    • CommentAuthorbeckyg
    • CommentTimeJul 23rd 2008
     
    Hi Lindy & Rita,

    Thank you for your replies.
    Lindy, I haven't tried giving up wheat as I don't really eat a lot but I have tried giving up sugar and it was very very hard! I too have had anaphalctic type symptoms which does really mean I need to do this and stop thinking it will go away.
    Rita, I have for the last few weeks gone back to only using aqueous cream which has helped a lot but today my legs are back to their itchy best!!
    Next week I have a few social things on so I know I can't begin the exclusion diet today but the next week I am determined to try. I think the forum will help me keep it up! Will let you know how I go!!
    Becky
    • CommentAuthorTEDDY
    • CommentTimeJul 23rd 2008
     
    Hi Becky G

    Like everyone has posted before you just have to do it as it is what is best for your health. You worry me when you talk about anaphylactic type symptoms. What are they in relation to and do you carry an epipen of adrenalin? If you are anaphylactic you need to carry an epipen.

    At first you think the elimination diet may be hard but how hard can it be when you know you will know for sure after the elimination diet time is up whether or not sals are a real problem for you and if they are then you will feel so much better sals wise it is like night and day.

    Lindy is right keep a diary of everything and all that you do etc it really helps to find out what you are specifically reacting most to.

    Take care
    Teddy
    • CommentAuthorMeleri
    • CommentTimeJul 31st 2008
     
    Hi, i'm Meleri (Mel) from Pembrokeshire, Wales. I have 3 children, the second, Ben is 14 years, gorgeous, but overweight (currently 6 ft tall and 21 stone). The others are if anything, underweight. Ben has suffered many structural bone problems - 'perthes' disease on both hips which he has had surgery for, knock knee syndrone - also had surgery for, and the latest fun is a severe allergic reaction to aspirin - manifested in a swollen tongue, and hugely swollen lips and eyelids. We can avoid aspirin-no problem, but i'm noticing strange things going on with his eating habits. He CRAVES sugar since a very early age. At 2 years he drank a whole bottle of calpol, whenever we had honey in the house, he would eat it like yogurt (and subsequently throw up). This would not stop him the next time though. He eats icing sugar, jam , you name it - he's binged it.

    As you can imagine, i am now in a bit of a state - and am VERY ANGRY with professionals who look at me as if i'm abusing him. I'm constantly looking out for his bad eating habits. We have little or no biscuits, sugar, sweets in the house now - a great cause of alarm to my other two children. One godsend is the Slimming World meetings that he is willing to attend. He has managed to lose 10 lbs in 5 weeks - wow - but has had relapses involving sugar binges. Very little importance has been given to food allergies by the GP and consultants that he sees. He has not been diagnosed properly with any allergy - this is just one big guessing game!

    Are there any similar stories involving salicylate allergies? Am I barking up the wrong tree? My GP thinks i'm making excuses for his obesity. Heeeeeelp! Mel x
    • CommentAuthorlindyd
    • CommentTimeJul 31st 2008
     
    Hi Mel
    Welcome to you and your son..
    Bless him.. he must be so unhappy....
    It sounds like it is possible he may be "sugar sensitive"....
    There is a syndrome (not recognised by medial professionals I hasten to add..) wherby a person has a particular biochemistry that makes their brain react to sugar as if was a drug..
    It is quite complicated but is connected with the brain chemicals serotonin and beta endorphins. and brain receptors ..
    I am only just getting my head around it myself at the moment so can't explain in detail yet..
    If you want to find out more there is an excellent book called Potatoes Not Prozac by Kathleen DesMaisons who has a Phd in Addictive Nutrition. She successfully treats alcoholics with the same diet that she treats people with sugar sensitivity.
    I strongly advise you to get a copy and read it through.. I think you will be very interested!
    I wouldn't mention this to the doctors yet though I can guarantee they will laugh!
    HUGS Lindy (Training to be a Nutritonal Therapist and getting there slowly!!!)
    • CommentAuthorMeleri
    • CommentTimeAug 1st 2008
     
    Thanks Lindy. I shall get on to it right away!
    • CommentAuthorTEDDY
    • CommentTimeAug 1st 2008
     
    Hi Meleri and your son

    I really feel for you and your son. It isnt easy to deal with weight factors and like you say the so called professionals look at you the parent as if you are responsible. I was told that because I could not breast feed my son as I was very ill at time and had an up and down section and ill myself nothing to do with the birth but taken back into hospital for two weeks while baby was at home with Dad! I was made to feel that because I did not manage to breast feed him that I was responsible for him developing insulin dependent diabetes when he was 18 months old.

    What I am trying to say is that when these so called professionals dont have the answers the easiest thing to do is to try to blame us and make us guilty. I was so young then and felt so responsible but looking back I see what they were doing.

    It is a steep learning curve to see what suits us and we are all so different. One person can eat so much and not put on an ounce and others it appears just have to look at food and put weight on.

    Your son must be very proud of losing 10lbs in 5 weeks and hope he manages to slowly but surely loose a bit more weight. It is good that you are there to support him through this. It must be so difficult for both of you and I really feel for you both.

    I am sorry I dont have any answers as to how he can loose weight but if you manage to find the book Lindy mentioned It cant do any harm to read it through. Re the allergy symptoms to the aspirin. Ask to be referred to an allergist at hospital as it is really important that he gets checked out for allergy as he may require an epipen of adrenalin if the symptoms you stated or get any worse sound like a full allergic reaction.

    He must also feel very depressed at being so heavy at such a young age and it is difficult enough being 14 without having to cope with weight issues. It is a vicious circle as when you feel depressed a lot of people want to eat and I really feel for you both.

    Sorry I know I am not being much help here as I dont have any answers but at least on the forum you have someone to talk to and share things with. Hope you get some answers soon.

    Before I was diagnosed with sals intolerance I was constantly ill and in bed with migranes, sinus etc and since being on the sals diet I no longer have either of these things that severely debilitated my life.

    Does your son have hives, itch etc when eating certain foods. It is good to have a diary and if he eats certain things write it down and see if you see a pattern emerging. Also products he uses do any products like e.g. deoderant, soaps, etc cause him any symptoms.

    Take care Meleri and hope you get the support you both deserve really soon.
    Teddy
    • CommentAuthorjen
    • CommentTimeAug 1st 2008
     
    Meleri,
    Sorry about what your son is going through. I am sure it is not easy to stand by and watch. But-he has a great mother who knows she is the one that really knows if the doctors advice is right or not. You will probably save him a lot of suffering by challenging what the doctors say. I mean I am not a doctor, but I have been going through this since I was a child and one thing I have learned is that doctors know nothing about food allergies! They are clueless. I mean I am sure there are some good doctors somewhere. But none of the (albeit, well meaning, I think) doctors I went to ever helped me with this. I would be nowhere if I just listened to them. So take heart-you are right to listen to your intuition with him.

    I wish I had a mom who understood when I was little. I also used to take the entire bag of Oreo cookies and hide and eat them all in one sitting. I remember doing this as early as 5 years old. Later I found out I had hypoglycemia, as I fainted at school and they finally figured something out. Mostly you avoid simple sugars-ie sugar sodas,
    sugary candy, baked goods etc. If he takes sugar out of his diet he won't have cravings any longer. I would be really careful of high fructose corn syrup-that seems to make my hypoglycemia out of control. Anyway, if you want to know more let me know, and I will help in any way I can. I hope he is feeling better soon. Oh by the way, later someone (actually may be the person Lindy quotes above) connected hypoglycemia to food allergies. I believe this is true so very well may be a sugar sensitivity.
    • CommentAuthorjen
    • CommentTimeAug 1st 2008
     
    Meleri, I forgot to mention the most important point. If he has hypoglycemia, you will know this if he gets grumpy without eating or if he goes wild when eating sugar and then goes into a sugar low with low energy, irritability etc. THe best way I have found to help this is to give up sugars of course and also have protein with every meal. Works great. I love the book Lindy mentions above. Potatoes not Prozac. Now that lady knows what she is talking about. If you read it make sure you try the carb potatoes at night suggestion. It makes you feel great. Good luck!
    • CommentAuthorMeleri
    • CommentTimeAug 4th 2008
     
    To Jen, Teddy and Lindyd
    Wow, I really appreciate your support here. I shall get back to you when I have read the book. Thanks, Mel x
    • CommentAuthorcharlie
    • CommentTimeAug 5th 2008
     
    I have never written in a forum before but I feel like I finally have an answer. I have been doing the elimination diet ( I think anyway) because everything I ate made my throat swell. Currently I am eating rice and roasted chicken (although upon checking they both have pepper on them)
    I have never had allergies before. I used to drink red wine nightly, have large meals, and enjoy any indulgence I wanted. This all came about one weekend at a spa in which I was wrapped in a seaweed body wrap and went into anaphylactic shock. Since then I have been swelling daily. I finally made the link one night when I put on some pimple cream and woke looking like Angelina Jolie. This has been 6 months of feeling awful, afraid to go out and eat, annoyed with anyone that would dare wear perfume and spending most days feeling like I might pass out. I truly thought that I was going crazy and it was completely psychological.

    To answer the original question I live in Calgary, Canada, in a house with my dog. I am single and 30 (my mother will be pleased that information is on the internet). I am a Social Worker and yes I am on the birth control pill and have often wondered if it might be causing my problems. I knew that it was something that I was exposed to daily, I just couldn't pinpoint what it was.
    I was wondering if anyone was doing household renovations when there allergies came? Mine came right after a bathroom, kitchen and fireplace renovation and have often wondered if I disrupted some random allergens that are affecting me now.
    The question I have is about products, what toothpaste is safe? Does anyone else dye there hair? Does anyone else miss wine? What do you do about eating at friend's houses?
    I have an allergist who has put me both on Zantac and Reactine and neither of them seem to work, do antihistamines work for these allergies?
    • CommentAuthorlindyd
    • CommentTimeAug 6th 2008
     
    Hi Charlie
    Welcome to the forum!
    I hope Canada is warmer than England in August at the moment...it's a bit brrr here!
    That must have been very scary with the seaweed wrap.. I guess something in it sent you over your tolerance level as "toxins" taken in through the skin have a stronger affect as they bypass the stomach and go directly into the bloodstream. Ironic isn't it that it was probably marketed as a "healthy" treatment meant to remove toxins!
    It is certainly not pyschological... I am just coming out of a toxic reaction at the moment and it is certainly very real...the dizziness and gut reactions are very physical!!!
    It is likely that we are born with a genetic predisposition to salicylate sensitivity (and for some us other chemical sensitivities) and it takes a "trigger" to set if off (or in my case make it worse). I have always had a mild problems since childhood as I have always disliked (to the point of phobia) certain foods which I now know are many of the ones that I should not be eating..so my body is very clever...
    So yes, I would say that the household renovations could have been your "trigger", repeated exposure to chemicals could have overloaded your system...
    My "trigger" was extensive botched dental treatment last summer with antibiotics/painkillers/injections containing metabisulphite...
    to answer your direct questions:
    There are some toothpastes that are salicylate free.. but I don't know what is available in Canada, perhaps soemone else will know. Avoid any toothpaste with mint or aloe.
    I dye my hair with a product called Naturetint, this is available in the UK but you may be able to get it over the internet. It is not totally chemical free but is the least chemical one I could find and I find it ok.
    I don't miss wine as I have never liked it.. (again my body being clever) I only ever drank really mild fizzy wine..
    I find that cetirizine (zyrtec) antihistamine does help with my reactions and I take a prescribed tablet daily anyway. I just take more when I react..
    If I eat anywhere other than home I take my own food.. even to my daughters....
    If you are eating the rice and chicken it is best to eat them totally plain at first and then add things slowly one at at time leaving at least 48 hours in between each new thing.
    Have you an epipen? If you are having anaphylactic symptoms then you should have one. My hospital allergist insisted I take one home from the hospital...
    I am sure others here will have some tips for you.
    Do let us know how you go on the elimination diet.
    Hang on in there.. it does get better..most of the time I feel ok now (except for the occasional slip up like the one I have just had.. but the serves to remind me to be careful!)
    HUGS Lindy xx
    • CommentAuthorTEDDY
    • CommentTimeAug 6th 2008
     
    Hi Charlie

    Welcome to the forum. Lindy has already given you good advice but I urge you to have an epipen especially when you have already been in anaphylactic shock. It must have been very scary in a spa going into anaphylactic shock. Its scary any where but that sounds even more. Like Lindy said the toothpaste in Canada will be different from here in UK I personally tolerate kingfisher fennel toothpaste but before that I could only brush my teeth with bicarbonate of soda. Tasty a bit fishy for me so happy to be tolerate the fennel toothpaste now. I know Lindy hates taste of fennel but I like it!!

    I dont drink wine as both Lindy and I have sulphites allergy. Sals wise if you stick to the elimination diet just plain rice and plain chicken boiled no premade chickens as they add to them preservatives etc garlic sometimes etc etc so plain boiled chicken or meat if you prefer. Then once the elimination diet is over you can begin to add bits in and keep a diary so you know where you are going and when you react you can look in diary and pinpoint culprit/s.

    Sounds like the house renovation could have been a trigger also like Lindy has already said. You get used to it all its hard at first and dont get me wrong I still get my off days when I see friends tucking into strawberries and cream in fact we are eating in tonight my daughter's 27th birthday so it will be a housefull and they will be tucking into things I cant have but I dont mind.

    If sals are a problem for you it is a pleasure to stick to what we can tolerate as sals wise you will feel so much better. I used to be in bed for days not knowing what was wrong with me. I was eating same as all the family who one is vegetarian and my son has insulin dependent diabetes so all in all we thought we were all on a very healthy diet compared to most people we knew. So it was a shock for me when I found out I had salicylate intolerance. Sals wise it is like night and day for me.

    So keep with the elimination diet, keep a detailed diary not only of what you eat, prouducts you use, people you are with, aromas you smell like you mentioned the perfumes, aftershaves, deoderants, air freshners all drive me ill and straight into bed.

    Once you explain to those around you that you cant tolerate strong perfumes etc if they are good friends at all they will accept this and crystal deoderant is great. I found that through others on this forum as I had never heard of it as I am a chanel no 5 girl and still miss that but happy to wear the crystal deoderant instead. I find you dont sweat with it and you dont have to put it on throughout the day like I did when I wore my chanel deoderant. So for me personally it works really well.

    Shampoo is still knights castile soap. Still not happy with totally as it leaves my hair a bit 'lank' feeling. I am considering trying a shop bought shampoo and everytime I am in chemist with my daughter the security people watch me like a hawk. They must think I am a shoplifter I am there with my magnifying glass trying to read all the shampoo levels. Must look strange but you have to scrutinize all labels. I dont really by anything prepared foodwise unless its for others and I am just so fed up with my hair I am considering trying a shampoo from chemist. If I dare to I will let you all know. Re the hair dye I have had mine dyed recently but cant remember the name of it my hairdresser comes to my home as I have type 1 latex allergy and cant go to hairdresser. I think there is a posting all about hair etc and the name of what I used might be on there. Have a look on other postings. Although in Canada may be different items.

    You will get used to it all Charlie and at least you can share how you feel with the forum members and we all know exactly what you are going through.

    Good luck and nice to welcome you to the forum.

    Take care
    Teddy
    • CommentAuthorTEDDY
    • CommentTimeAug 6th 2008
     
    p.s. for antihistamine I am on xyzal daily

    Teddy
    p.s. Lindy
    Hope you are feeling a bit better today
    • CommentAuthorcharlie
    • CommentTimeAug 6th 2008
     
    Yes I do have a epi-pen as well as liquid benadryl. My purse is a medicine cabinet. I spent my morning in the shower reading ingredients and have found that Sulphates is in everything.
    What I'm wondering is with this being a sensitivity can it be fatal. My allergist has said that my throat/glands swelling is not an allergic reaction although they swell and go down when I've eaten/smelled something. It is very apparent when they are enlarged although this hasn't affected my breathing. He's written me off as crazy I'm certain.
    The other question I have is if this was triggered from Toxins, would a liver cleanse work to "reset" my body. I certainly miss my old indulgent life where food didn't send the fear of god into me.
    People keep talking about there vitamins, is there a mix that is good for building the immune system?
    Thanks for all the advice, Day one on elimination, I'll keep you posted
    • CommentAuthorTEDDY
    • CommentTimeAug 6th 2008
     
    Hi again Charlie

    Dont know anything about liver cleansing. I also dont take supplements as yet. My professionals say that if you have a deficiency in a vitamin etc it will show up in blood tests and therefore if it doesnt show up you dont need them.

    I have low potassium so I am on massive dosage of potassium called slow k for many months now after discovering this whilst in hospital for an operation. I know what you mean about your handbag being a walking medicine cabinet. My bag is getting bigger and bigger and heavier and heavier.

    I dont use any shower products as I cannot tolerate a lot of things so everone is different as we say and remember that sulphites and sulphates are two different things.

    I think Lindy has put a posting on this difference somewhere on the forum if memory serves me correctly. I seem to forget such a lot at the moment.

    Good luck with elimination diet. It is the only way to go forward.

    Take care
    Teddy
    • CommentAuthorlindyd
    • CommentTimeAug 6th 2008
     
    Charlie
    Sulphates are generally "safe" for someone who is suphite sensitive. They are what our bodies should turn sulphites into....(having said that there are some people who are also sensitive to sulphates.....).
    I have no problem with sulphates in body products although I have a big problem with sulphites..
    It is normally the classic IgE allergies that are immediate and can be fatal.. when even a very small amount of a substance will provoke a big reaction (such as my grandson who has a peanut allergy). With "sensitivites" the symptoms tend to be delayed and not as "dangerous" but can feel as bad as an IgE reaction and be "anaphylactic like" with throat swelling/chest tightening etc - I have this from sulphites) so allergists do play on the safe side and issue epipens. I have never had to use mine although my reactions can be scary.. my reaction this morning was a very "toxic" one but I had no breathing problems/hives etc. It just takes a while for my body to detox the toxins in my bloodstream. I guess if the body becomes too overloaded and unable to cope then the epipen may be needed.. The key is not to overload the body...
    I take a multinutrient/multivitamin and extra calcium, magnesium and zinc. It took me a while to find some that I could tolerate.. you have to get good at reading labels..
    I am also a big fan of probiotics as a large part of our immune system is in our gut!
    Vitamin C and zinc are good for the immune system.
    Good luck with the elimination diet
    HUGS lindy xxx
    • CommentAuthorTEDDY
    • CommentTimeAug 7th 2008
     
    Just realised you had breathing problems also Lindy. Snap. Still blaming it from when I cleaned up and will ask allergist about the mould spores didnt think of this! Thanks for info.

    Take care
    Teddy x
    • CommentAuthorhillbilly
    • CommentTimeAug 24th 2008
     
    Hi,

    I just found this yesterday. Haven't had time to read much (severe migraine put me in bed for 2 days).

    I've had migraines for several years now. Started out once a month. Two years ago they "morphed", as the neurologist put it. Been through quite a few meds. None work reliably-usually not at all.

    Been trying to find more info on the causes and solutions to migraines. Somehow I came across Sue Dengate's info. I've ordered her book. It's not here yet, but I went ahead with what I have found out and began "my" elimination diet. Not the rice, meat and pears thing. Just what I could glean from the web about Sue's way. Trying to err on the side of caution.

    This last migraine really put me over the edge. I cannot take it any longer. If this ss problem might be the answer, then I am willing to give it 110%. Besides, everyone (dr included) says I should keep a food diary. Told hubby to just support me (take pity) cause it won't hurt me.

    Oh, numerous dr's cannot find any reason for the migraines (before "morph" were considered hormonal). Neuro dr isn't interested in the cause (she's a headache specialist).

    Really could use some help. Like are flaxseeds O.K.? What about rice bran for fiber?

    I've been IgE tested for Candida 5 years ago and was "off the chart" (according to the dr). Never did anything about it, though. What I found said not to worry about that right now. What about more common allergy stuff (soy, eggs, etc)? Do I need to rotate foods during the elimination phase to prevent further problems?

    Sorry if all this is too much or if the book will answer questions.

    Thanks
    • CommentAuthordame
    • CommentTimeAug 26th 2008
     
    I've been reading everyone's posts and found some of the info very useful - so thought I should share my story and maybe help someone else. My name is Tilly, I'm 29, grew up in Australia and relocated to London 3 years ago, just after I was diagnosed with ss.

    I was a sickly child, constantly had coughs and colds. My parents were hippies and I grew up on a farm in Tasmania (one of the most untouched places on earth) and I was breastfed so I don't buy the theory that it's the modern diet/household chemicals cause allergies/intolerances. If anything, I was too protected: the one time I ate McDonalds as a kid, I threw it up immediately! I was immunised however, a potential cause of allergies/intolerances.

    As a kid I took alot of antibiotics and immune support medication. I remember getting severe thrush from the antibiotics. I had allergy tests but was so ill and hypersensitive that I tested positive for everything, making the test invalid. I was put on a dairy-free diet and had to give away my cat... and still I'd get sick. I had bad acne and took roaccutane during university - it kind of helped but my skin was still not 100% clear. I have been on the pill on and off since then too. My last year at university was very stressful (my father passed away under terrible circumstances, my mum got cancer and I was writing my thesis). I now know that my ss was caused by this stress. I had symptoms, of ever growing inconvenience, for 5 years before I was diagnosed. GPs told me I was stressed, a hypercondriac, depressed... At first I had migranes and dizzy spells, later chronic fatigue, vertigo, memory loss, clumsiness, depression, arthritis, extreme irritability, irregular heartbeat, not to mention the digestive problems. I would have 'episodes' where I couldn't get out of bed for days. Eventually I was going into my GPs surgery every morning and sitting in reception in tears. Finally this got him to run more tests and he found my blood 'sedementation' levels were off the chart. I was sent to an immunologist and put on a hardcore drug (the name I forget, but we had to import it from New Zealand because it wasn't available in Australia), which helped a bit but I still felt poisoned. Determined not to let my illness ruin my life, I took a promotion and moved from Melbourne to Sydney. Someone recommended that I go to the RPAH allergy clinic which coincidentally was round the corner from my new house. I saw an immunologist there who, for the first time, listened to me properly and, I felt, took me seriously. He ran every test in the book and I came out clear. So he sent me to his colleague, dietician Anne Swain, who predicted I had acute ss within 5 minutes of meeting me. While I had never heard of this, I felt she had hit the nail on the head I was overjoyed to be validated and understood! I undertook a 6 month elimination and testing diet under her supervision which confirmed ss. I find it very easy in the UK to eat an ss-free diet. Although more recently I've developed eczma on my face, and I now get crazy itchy legs (although a 2-week seaside holiday made them stop for a while) - I can only hope that I don't develop many more 'new' symptoms over time. I find I have one 'relapse' about once a year - the last few months have been emotionally difficult for me and I have had a bad attack of IBS and fatigue, and am currently being very strict with my diet.

    Things I have learned: I take a probiotic and a multivitamin (my mum mails me my ss-safe brand from Australia!). I use no painkiller other than paracetemol. Colonic irrigation is helpful after a very bad attack. I now use Decleor products on my face and my skin looks amazing (I get compliments). When I am healthy, I eat one small salycilate item per day (eg a 1/4 strength coffee) to keep my immune system in fighting mode. I have low blood-sugar and a slow metabolism so must eat breakfast as soon as I wake up in order not to get dizzy on the tube in the mornings. I probably have candida overgrowth - I'm a sugar addict, get thrush occasionally and suffer from gas. I have learned that what we are taught about nutrition isn't totally correct, and to follow my instincts. I have learned to ignore people who ask me if I have tried homeopathy or yoga or tell me that green tea and ginger are good for digestion etc. I have learnt it helps to explain to people that ss works like the little old man whose wife is trying to poison him with a little bit arsenic in his dinner each night: after the first night he feels a little ill, by mid-week he's very ill, and by the end of the week he's so poisoned that can't get out of bed. I also explain that I am like the reverse of a vegetarian: meat and dairy is fine, but fruit and vegetables are a no-no!

    When I was diagnosed 3 years ago I searched the internet and there was so little about ss. Now there are a few great sites such as this. I expect that in the next 10 years, there will be an ss box to tick for airline special meals (I can live in hope can't I?). That said, I know I'll never be able to backpack around Asia!

    I am writing this in bed as I suffer from a bout of severe tonsilitis - my third in as many months. This one has been so bad that I had to take myself to hospital yesterday. I'm on a course of strong antibiotics and am taking 2 x 8m Lab4 Bio Care probiotic capsules per day but am heading to the store to buy their ultrastrong capsules today. I have been so stressed and so ill over the last couple of years that I am now thinking I should go and see a counsellor - it's beginning to dawn on me that the correlation between my body and my state of mind is a major factor in my ill health.

    That said, I am keen for advice on any s-free immune boosters - vitamin c doesn't seem to cut it and some of you guys have been mentioning L-Glutamine, digestive enzymes and CQ10? And is Threelac ss-safe?

    I consider myself one of the lucky ones - so many people suffer without answers and at least I know how to manage part of my illness through diet. Sorry for the long post! Love to you all,
    Tilly
    • CommentAuthorTEDDY
    • CommentTimeAug 26th 2008
     
    Hi Hillybilly

    Nice to welcome you to the forum. Like you I was diagnosed with migranes and sinus and used to spend most of my life in bed. When I discovered the salicylates issues and changed my diet to a low sals intake I have never had a migrane. This from someone who understands exactly what you are going through. I used to take migraleve forte and imigran and had injections for migranes when I was diagnosed with being intolerant and sensitive towards salicylates migrane wise I have never looked back it is like night and day. I have never had a migrane since and I used to be in bed for up to 48 hours with attacks causing severe vomitting and like you will well know severe and excruciating pain.

    It is worth trying out the sals elimination diet and going onto low sals and then building up and see if it helps with your headaches.

    It is strange for me now having had migranes for most of my life not to have them any longer. It is also strange as if I get the odd headache now and again maybe from not having eaten or being stressed it is what I call a 'normal' headache which I had never experienced before.

    Keep a diary if you do decide to do the elimination diet and then low sals and build it up and see what makes you react.

    Sorry I dont know answer to the flax etc questions. I am in Scotland and dont use these things so hopefully other forum members will be able to answer those questions.

    Take care and keep in touch with how things are going for you and it would be interesting to share your research and see if doing this helps you like it did me. Migranes ruined my life for so many years. I missed out on so many venues, important events when my children were growing up as I was ill in bed with severe migrane for sometimes 2-3 days at a time but mostly 48-72 hours when it used to take its own time to go away. I couldnt even stand to hear the birds singing in the garden. You will know exactly what I mean or if the kids were bouncing a ball in the garden it would go right through me.

    I am glad to say I have not had a migrane for 18 months+ so hope that the sals work for you too.
    Take care
    Teddy
    • CommentAuthorTEDDY
    • CommentTimeAug 26th 2008
     
    Hi Tilly

    What a wonderful analogy you put on about being sals sensitive. That is one I will share with my husband this evening when he comes home. Sometimes he thinks I will just put a little such on such on plate and I keep telling him that he isnt being kind to me doing this and that I dont want to eat things that will make me react as it is so miserable and not worth eating something I shouldn't. I will run this explanation past him and hope he gets the message more clearly. He thinks he is being kind when its the opposite!

    That is a really good analogy thanks for sharing that with the forum. Nice to welcome you and hear your story and how things have been for you. You really have had a tough time and I do think that stress plays a big part in this. Interesting that you can also use decleor products. I am sure my daughter uses some of them but I am so sensitive I dont use much at all. Must have a look at her products next time.

    I am also amazed that you actually met anne swain I would love to meet her. I think it safe to say that we have all been treated how you have, no-one believing in you, people thinking that we are hypochondriacs. My family when I was much younger paid for me to see a specialist high in his field at a top hospital and it cost them a fortune and the diagnosis was - bearing in mind I was a teenager at that ime - its all in her head. She is imagining the pain etc etc I wont go on.

    I felt so down and sad at that time of my life when I should have been happy and when both my parents told me that this must be the case as Mr so and so was saying it and he knows more than anyone in UK etc etc I think all the forum can imagine how it felt.

    I have never forgotten that day. Sadly it is only now later in life that I have found out about sals and this wonderful forum and all the members who help me through things that I am so much better sals wise. No migranes, no sinus any longer so for me that is a miracle in itself. Just wish I could get other health issues sorted out the way I have managed to get my sals sorted out.

    I hope you enjoy the forum and so nice to meet you. Hope you can get some form of counselling or even being able to discuss things like this with others is a tonic in itself.

    Take care and hope to speak again soon
    Teddy
    • CommentAuthoramandahv37
    • CommentTimeSep 12th 2008
     
    Hi

    I was diagnosed this week. I work from home in 3 self-employed roles; foster carer; distance-learning tutor and complementary therapist. The first two roles I started this year (and thank goodness with this new diagnosis as it could seriously affect some employments). My role as complementary therapist means I have had to go through all my essential oils and toiletries to give away to clients/friends/family as there are so many I cannot use. Never mind as it's a lovely gift for them.

    What do you do about toiletries? I am being quite thorough about reading labels and it has been difficult to purchase but I seem to have most now. I make some of my own but many of the standard base products contain coconut, aloe vera, chamomile etc so I have to start from scratch. What I was wondering about was make-up. Any tips/products?

    Great site! Glad I found it.

    Amanda (from the UK)
    • CommentAuthorTEDDY
    • CommentTimeSep 12th 2008
     
    Hi Amanda

    Glad that you found Beth's forum and nice to welcome you to it. You will be able to read all the old threads and learn lots of information about salicylates and just being able to talk to others is a nice thing as I am sure you will find people on the forum will be able to understand exactly what you are going through. I personally dont wear any make up although before all my allergies and my salicylate intolerance I did use make up but not much and not very often.

    It is a case of finding what suits you and what doesn't. What you will also learn on the forum is that just because something suits someone who has salicylate intolerance/sensitivity it doesnt mean that it will suit others. We are all unique so it doesn't always work that what is okay for me e.g. will be okay for you. Its a case of trial and error and finding out what you can and cannot tolerate once you do your elimination diet you will be able to add things from the low sals slowly but surely and I am always on at people to keep a diary. It is a must. To write down everything, not just what you are eating, what you are using product wise etc, where you were, what you were doing, aromas you smelt etc etc the list is endless. This way you can figure out what you are reacting to.

    Hope you get useful information and help from the forum. Its also a good place to just put down how you are feeling and you can rest assured there will be someone on the forum who is able to understand how you are feeling and it stops us from feeling alone or isolated like I did before I found the forum.

    Nice to meet you on Beth's forum.

    Take care

    Teddy
    • CommentAuthorlindyd
    • CommentTimeSep 14th 2008
     
    Hi Amanda
    Welcome!
    I am qualified in Aromatherapy and I too have had to stop using most of my oils. I do still use a little lavender and also a little tea tree for antiseptic, both without any problems.
    I do wear make up and read labels carefully avoiding anything starting with sal or ben!(benzoates)
    Annoyingly I am finding the cheaper the brand and the less "natural" the better.. which for me goes completely against the grain as I had changed over to all "natural" products before this hit me full on and have now had to mostly go back to chemicals...
    I am using some products by Simple without problems and Teddy introduced me to Castile soap (I use the liquid one) which you can buy on ebay.
    There are some salicylate free make up and body care ranges if you search through google but I haven't bought any as they seem really expensive and mostly have to be shipped from abroad.
    As Teddy says unfortunately it is trial and error as we all have different tolerance levels....
    Off topic.. I am interested in how you got to be a distance learning tutor.. I am an Adult Ed Tutor and teach Evening classes, unfortunately they are not running at the moment due to the huge increases in fees. I can teach Nutrition, Aromatherapy and NVQ Administration. Any suggestions who would be best to appy to?
    HUGS Lindy xxx
    • CommentAuthormands08
    • CommentTimeSep 23rd 2008
     
    Hi!! im so glad i found this forum-i never knew so many people had SS!! I always felt like it was only me as 99.9% of the people i talk to have never even heard of salicylates or if they have, they think they are only found in asprin!! I WISH!!

    Well i better introduce myself anyway, im Amanda, im 20 years old and live near manchester in the U.K.

    I have always had problems with urticarial rashes and strange skin reactions that doctors cant even find a name for!! in the last 2 years though This problem has gradually got worse and worse, eventually it got that as soon as i cleared one rash another one would come up,and i am now on double dose desloratadine daily. in may this year i developed a very strange skin problem which i am still struggling with. The doctors are totally puzzled and have never seen anything remotely similar before. One consultant even tried to say that i could be creating the lesions myself as a form of self harm, the possibility of an allergy or intollerance was not even looked at!!!

    As you can imagine, this is getting very frustrating!!! Makes me wonder how many people are also struggling with skin conditions like this and are getting no where, apart from into mental health hospitals!

    So now i am on an elimination diet, Salicylates were down as the possible culprit for my urticarial rashes as i found that anything containing spices, alcohol, dried fruits or anything highly colored would bring me out in an awful rash that i could not clear even on high doses of antihistamines, think this is because salicylates remain in your body for several weeks and because i at that stage i didnt know SS excisted, i was continually adding more salicylates into my body. These foods stood out the most as i had always been sensitive to these things, so i was able to identify them as the cause and stopped eating them but more recently i couldnt tell what was causing the rash.

    When i followed a low salicylate diet it helped a lot, however i soon started letting things slip, especially when i went out for meals in restaurants as i found it really hard work checking everything with the staff!

    Am finding the elimination diet very very very tough and boring, but hopefully if we can find out what is causing my problems it will al be well worth it!

    mands
    xxxxx
    • CommentAuthormands08
    • CommentTimeSep 23rd 2008
     
    forgot to mention i also have had reactions to deodrants, toothpastes and other products containing salicylic acid.
    • CommentAuthorlindyd
    • CommentTimeSep 23rd 2008
     
    Hi Amanda
    Welcome! I am on the south coast of the UK...Well done for identifying your problem and sticking with the elimination diet.. its tough but you will find it worthwhile in the long run! I am now a year into my salicylate/sulphite sensitivity journey and am now well.. if on a very restricted diet!
    Good that you have identified your issues while you are at the rash stage... I have had skin problems for many years but it was only last year that my problems really took off and I became ill.. it is good to catch this while you are young and in the early stages..
    It is also good that you are aware to avoid the sals in body care products as absorption is greater through the skin.
    Unfortunately eating out is not really an option when doing the elimination diet seriously (in fact its not an option for me at all lol due to having sulphite problems as well!)
    Don't forget to keep a diary of your food intake, how you feel and where you are as this will help you to look back on your reactions..
    Remember that sals can also be inhaled via other people perfumes, menthol products etc...
    HUGS Lindy xxxx
    • CommentAuthorTEDDY
    • CommentTimeSep 24th 2008
     
    Hi Mands

    Welcome to Beth's forum. You get used to the sals diet very quickly as you will find out like it sounds as if you are already that when you dont stick to it you feel terrible again. I for one am happy to stick to it as for me since finding out about sals and getting all the help and support from the sals family forum you dont feel alone or isolated. I dont know what I would do without this forum and all the help and just chatting in general to all the members. So thanks sals family. Like Lindy said keep a diary that is a must that I usually go on about but its the only way to figure out what you are and are not reacting to. We all react differently so what suits one of us doesnt necessarily suit another.

    Lindy - I managed to eat out at the restaurant yesterday and was really looking forward to it. It was such a treat and I thoroughly enjoyed it but woke up during night in such awful pain - the face pain again so dont know if it was in relation to eating or like I mentioned in another posting to Rita I have come off two medications one of them my HBP medicine for the two weeks before my tests next week so wondered if it could be bp related.

    So Mands good luck and glad you have found the sals forum. Speak soon and hear how you are getting along.
    Take care
    Teddy x