Not signed in (Sign In)



Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

Welcome Guest!
Want to take part in these discussions? If you have an account, sign in now.
If you don't have an account, apply for one now.
    • CommentAuthorRita
    • CommentTimeDec 15th 2008
     
    Warmest of Welcomes Fiona. Currently looking into the gallbladder. It's possible that gallstones could be reducing the amount of bile released into our digestive system, which would end up in smaller amounts of digestive enzymes. I have a family history of gallstones and am currently scheduled to go for blood tests to check for any. I did check for mercury levels, and they came out normal for me, so taking the mercury fillings out of my mouth doesn't seem like a neccesity.
    • CommentAuthorEmily88
    • CommentTimeDec 16th 2008
     
    Hello! My name is Emily and I live in Delaware. I am sensitive to salicylates, sulfites (Sodium Benzoate) and MSG (glutamate). These items give me fibromylgia and, in extreme cases, seizures. My symptoms are: anxiety, fatigue, constant joint pain, liver pain, gall bladder pain, face rash and itching, vaginal irritation (don't say I don't reveal all!), hair loss, brain fog and asthma. The seizures are triggered by the glutamate but I can control them by avoiding it and taking meds.

    I am getting better every day. After five years of hell, its heaven to not feel awful all the time. I quit using most chemicals and strictly control my diet. I take calcium, zinc, vitamin B6 and Vitamin D supplements. I get them compounded so I know there is nothing I can't have in them.

    I don't eat:
    1) wheat
    2) corn
    3) dairy
    4) soy
    5) most foods with salicylates (I eat some of the veggies in the "moderate" category so I don't starve)
    6) eggs
    7) nuts
    8) pork
    9) fruits (I hope to return to pears some day)
    10) vinegar
    11) alcohol
    12) processed sugar
    13) Nightshades (tomatos, potatos, peppers, egg plant, etc)
    14) Citrus

    I eat:
    1) chicken
    2) beef
    3) green & lima beans
    4) lentils
    5) ice burg lettuce (without dressing)
    6) squash
    7) "white" sweet potatos
    8) Quinoa
    9) Millet
    10) Rice
    11) Broccolli and cauliflower (rarely)
    • CommentAuthorTeefee61
    • CommentTimeDec 16th 2008
     
    You eat less than me! No probiotic? Or omega 3s?
    Why can't you eat pears?

    I suppose your symptoms are pretty similar to many people on this site, if that's any consolation (some worse, some not quite so bad). It's encouraging that you're getting better, though. Any secrets to your success?

    T x
    • CommentAuthorlindyd
    • CommentTimeDec 16th 2008
     
    Hi Emily
    Welcome!...I am also very very salicylate/sulfite sensitive..and cannot at the moment tolerate wheat and dairy :(
    Here is what I can eat in case it helps :)
    all organic:
    Chicken
    Turkey
    Beef
    Lamb
    peeled potatoes
    peas
    green beans (a few)
    half a carrot :)
    brown rice
    Puffed Rice cakes (and more rice cakes and more rice cakes)
    Natures Path Organic crispy rice pops
    Meridian cashew butter/biona cashew butter
    a tiny bit of organic peanut butter :)
    very ripe bananas
    ripe peeled pears
    ripe peeled golden delicious apples (but am having some problems with these at the moment but ate them ok all summer)
    Tyrrells plain Potato chips :)
    Organic Oven chips (fries)
    Rice Bran Oil (a little)
    very weak clipper organic coffee
    a purified Fish oil capsule twice a week ( more often makes me bad)
    calcium/magnesium/zinc supplement
    multinutrient supplement
    probiotic capsule
    No Phenol Capsule

    Sounds quite a lot when you list it but it is very very boring anf bland as no spices/onions etc :(
    Love Lindy xx
  1.  
    Hi Everyone,

    Wow what a great amount of amazing information!!

    My name is Heidi, I am 35 and live in Toronto, Canada. Married win son 4.5 yrs old. Stressful Job.

    I have had progressive allergy issues for the past 4 years or so. It started with Advil, then Tomato, then Tylenol. At this point I typically get a big outburst of hives on average 3 times per week. It appears to be directly related to eating. I recenty went to an allergist who ran a number of tests and decided based on clinical data that it is indeed a salicylate allergy. I will be trying some of the tips found here. Thanks so much to everyone for contributing. I really appreciate all the combined knowlegge in one place.

    H
    • CommentAuthorlindyd
    • CommentTimeJan 4th 2009
     
    Hi Heidi
    Welcome to the forum :)
    You will find lots of inormation on this site if you can spend some time (lots of time!) reading the Info sections and back Posts.
    Salicylates can also affect you if they are taken in through the skin so don't forget to check your body products..look for any words beginning with or contaning "sal" "ben" or aloe... Many perfumes also contain methyl or benzyl salicylate..
    Everyone here is very helpful so if you have any questions ask away :)
    Love Lindy xx
    • CommentAuthorTeefee61
    • CommentTimeJan 5th 2009
     
    Hi Heidi,

    Welcome to the forum! Stress may make your problem worse, so apart from all the food/vitamin issues, it's a good idea to do relaxation exercises! (Im going to take my own advice... one day).

    Best wishes

    Tx
    • CommentAuthorashley
    • CommentTimeJan 7th 2009
     
    Hi Everyone. I'm new to the forum. I was in denial for awhile about my food allergies. I continued to eat foods high in salicylates, ignoring my diet. Now, it's a new year and I'm ready to face this problem. I'm so sick of the hives. Right now, I'm taking Zyrtec and using Desowen lotion on icthy, dry areas of my skin.
    I look forward to chatting with all of you and I hope that I can finally get this problem under control.

    ~Ashley
    • CommentAuthorlindyd
    • CommentTimeJan 8th 2009
     
    Hello Ashley
    Welcome :)
    I was in denial for a while too ...I had diagnosed my own sulphite sensitivity and when my allergist added a salicylate sensitivity to it I did not want to believe him for a while as it cut my meagre food choices down even more.. but he was right :(
    You will find a lot of info on this site in the "information" section in the blue areas at the top of the pages..also the "step by step" thread at the top of the list of post threads is really helpful.
    Let us know how you get on and ask any questions you have everyone here is really helpful :)
    HUGS Lindy xx
    • CommentAuthormrrwbrown
    • CommentTimeJan 16th 2009
     
    Hello Everyone

    My name is Richard, and i live in indianapolis, indiana and i am 27 years old.
    I had been having chest pains (non heart related) and my doctor put be on naproxen...omg...worst...experience...ever.
    I then started having muscle twitches and my intestines hurt...along with stomach issues and dizziness.
    I then experienced major weight loss, and thats when i finally when to the doc, and referred myself to an allergist.
    He tested me for various things, and came to the conclusion that i was allergic to chemicals, but unfortunately could not test for it.

    I have a serious reaction to most smells such as perfumes and cleaning products...but not until recently had the food allergy issue popped up.

    I am kind of sad about it..as i do enjoy food and i enjoy having dinner out with family and friends...however; it seems like that might have to be ending...

    Currently i am still trying to find products...such as cleaning products and hygiene products that will help me with this issue...
    • CommentAuthorGemstone
    • CommentTimeJan 21st 2009
     
    Ello Richard, welcome.
    Yeha the weight loss can be tricky, I find I tend to let myself be a teeny bit cuddly, cause anytime I have a reaction the weight just drops wayyy off and I get all bony, which doesn't suit me! Recently lost alot of weight grrr.
    The symptoms you describe sound pretty exactly the same as the ones I have, though I also get my limbs going numb also.

    Have a look around the forum and the site, theres alot of info about things like products and recipes etc.

    Instead of having dinner out maybe you can have sal-free picnics, or dinner at someones home? Just think of all the money you will save :-)
    I also love my food, but it just takes a while to get your head around it. Hooray for Garlic, I always say!
    Take care
    Gem
  2.  
    Hello!!

    My name is Paula, I am originally from Perth, Scotland but am now living in Melbourne, Australia with my husband and toddler daughter. White pudding supper (i better explain!) is a very unhealthy, lovely Scottish meal from a fish and chip shop, deep fried of course! Don't know why i chose it....... always thinking of food I reckon....
    I've been having stomach cramps for about, well I reckon abot 12 to 15 years and I've only JUST found out what it is! I have a dairy allergy ( i know, it's rare!) though the dieticians don't think i do ( there's no scientific evidence....) I had a blood test for IgE and was a 4 for dairy. Then, at end of last year found out i had fructose malabsorption. Have done the ' non fructose' thing for a couple of months, I'm a lot better but not great. Not great at all really. Fructose malabsorption dietician said salicylates. And after reading a lot of your website, its all just starting to make sense.
    I've been having bad rashes for few years now, used to have to do a lot of running to loo but that has mostly stopped now, stomach cramps ( mostly at night, why is that?) and after i eat certain things, I get really, really hungry. Like i'm even hungrier than when i started to eat!! Oh! Also, i get this thing, where i feel like my mouth fills up with all this saliva or something and i'm gonna be sick but I never am. Its like a river of saliva, it's bizarro. Sorry!! Totally gross I know.

    People say I can oats but i get really hungry after I do. Why is that? The stuiped dietician just laughed when I told her. I got it with a banana yesterday too. These are just the recent times that I'm remembering....

    Anyway, I've looked at a few forums on these sort of things and this is by far the best. You all seem to really know what you're talking about. Its so frustrating. Even google lets me down a lot! So, I'm so glad to have found this!

    I'm only eating some weird bread that they told me to eat when i had my hydrogen breath test (was eating sourdough white)
    fish
    meat
    eggs ( though not many at all as daughter still breastfeeding and she's allergic. Hospital told me to keep eating them though)
    spinach
    oats with maple syrup (haven't been eating cos of hunger though)
    banana (ditto)
    mayonnaise ( maybe not a good idea)
    some biscuits ( wheat, oil, sugar)
    chicken

    thats it really, i take a multi vit and some caltrate. I'm too scared to eat anything. I always thought rice gives me a sore stomach but everyone says its ok, same with potatoes. Haven't plucked up courage to eat them yet......

    thank you!!!!!!
    • CommentAuthorlindyd
    • CommentTimeFeb 3rd 2009
     
    Hi Paula
    Welcome!
    Australia... I bet you are much warmer than us who are in England.. we have just had a couple of days of snow.. it has melted mostly here this afternoon though....
    It certainly sounds like you are sensitive/intolerant to something..whether it is salicylates/dairy or whatever...
    There are a few things you can do.. the first is the hardest :-(
    Many of us have been on an elimination diet just eating rice (white is best others here have had problems with brown although i eat it okl) plain chicken and peeled pears and water. You do this for at least 3 days.. to clear your system... and then you start adding one food back at a time leaving 2 or 3 days in between each new food so you can guage reactions...It's no fun but it is the quickest way to find out what you can and can't eat..
    The slower way is to keep a comprehensive food diary of everything you eat making sure that you rotate your diet so you dont eat the same thing within 3 days.. (eg if you eat wheat you dont eat it in any form again for another 3 days). You will then see from your diary when your symptoms ar worst and you can often pinpoint your problems foods.
    The third way if you are suspecting salicylates is to look at the information on this site (headings at the top of the site pages) and find the lists of foods that are negligible low moderate and high salicylates. Choose a diet that only contains foods that are low or negligible salicylate and you will soon know if you are reacting to sals as your symptoms should improve.
    Unfortunately some of us are also sensitive to foods other than sals.. I have problems with sulphites and also wheat which does make life more difficult but I do find I am much better on a low salicylate diet..
    I also had terrible problems with itching and stomach problems before I change my diet..
    the bad stomach at night is probably because most people have a delayed reaction of a few hours so as food is eaten during the day it often takes until the night for it to show up as a reaction. I mostly itch in the evenings...
    HUGS Lindy xx
    • CommentAuthorRita
    • CommentTimeFeb 3rd 2009 edited
     
    Hi Richard. If you stay on track and follow the low sal regimin, you may find yourself eating out at your favorite restaurant once again. There's hope.

    Paula. I would suggest following the low sal diet to see if your symptoms improve. Then move on the the challenge phase if they do. If you are sal sensitive, you are still eating foods that would cause you to feel ill such as the spinich which is high in salicylates. Dr Oz said on Oprah that feeling hungry after you eat could be because your body is still craving the nutrients that it is not getting. Also, I have read that it could be because if yeast is a problem for you, your body will crave more carbs to feed the candida.

    I still get the saliva thing. I know it's caused by my condition, but I can only guess it is because it has something to do with a high histamine reaction.
  3.  
    Thank you Lindy and Rita!

    Thanks very much for answering me. I have that itching too, esp on my hands. I always thought it was the dairy but now I've been pretty much dairy free for 2 months, it's still there though not half as bad. It was crazily itchy last night though....mmmmm......

    I think my problems are not helped by the fact that some food that I could eat that have very low fructose are high in salicylates and vice versa. Pears are very high in fructose. A huge no no. I didn't realise that about spinach at all though. Thanks!

    I'm going to have to try some rice, I'll do it next week when my husband is on evenings so if I have a bad night, he can get up with my daughter!

    Has anyone got pregnant while going through all these difficulties? We were thinking of trying again, once I've got myself a bit more sorted out..... thing is, when I was pregnant, I was absolutely fine, ate what I liked, I thought I was cured until a couple of months after the birth, it all came back again. I suppose hormones.. It would just be so awful to still be bad while pregnant. That would suck bigtime!

    We've just had the hottest weather for over a century. 3 days of over 43! The other days were really hot too. It's just not normal!

    cheers very muchly xx
    • CommentAuthorTerry
    • CommentTimeFeb 5th 2009
     
    Hello Richard

    For cleaning I use:
    Steamer or
    Vinegar -cleans 90% germs
    Sodium Bicarbonate - brilliant for cleaning work surfaces baths etc. as is lemons
    Salt- chopping board - boiling water –vinegar- lemons
    Denture effervescing tablets- in toilet because there is citric acid in it and borax over night (separately).
    Furniture polish 2/3 olive oil-1/3 vinegar – brilliant shine
    Ecover for clothes – vinegar fabric cycle
    Blocked sink Sodium Bicarbonate then Vinegar and stand back

    Hope this helps

    And when I have been really well I have had meals out with out reactions but I always take ant- histamines first. Also I sometimes just have some chips, peas and plain chicken when I am out……but this is only when I am well and feel my sals level is low.

    Kind regards

    Terry
  4.  
    Dear whitepudding supper,

    Really interested to hear about your oats problem because my little one seems to react to oats even more than wheat to which he is officially allergic - daughter also, and oats give me indigestion. I thought we were the only ones - seems such an odd thing to react to doesn't it? (All in the context of sals and other allergies - wot fun!)

    Good luck with elimination diet - we are planning one for a few weeks time - or possibly sooner. Dreading it!

    Judithxxx
    • CommentAuthormer
    • CommentTimeFeb 12th 2009 edited
     
    Hey Everyone!

    I have been reading the forums for about a month now and decided to join. I am new to this SS. I have had asthma since jr. high but it has mostly been under control. I have always had allergies. I had an unknown allergy (rash) as a toddler that went away when we left the state to go on vacation and returned when we came back. I developed an allergy to penicillin as a young child. Then at my first job where I washed a lot of dishes I became allergic to the ammonia in the dish liquid. Figured out about 5 years ago that I can't tolerate canola oil. Recently became sensitive to smells like cleaning products and fabric softeners. For many months now my asthma has been out of control with no rhyme or reason why. My blood pressure has elevated so I began taking asprin for headaches and stuff because it is better on the heart. Had an almost instant reaction to raspberry jam, so I started looking around and came upon your site. We are big foodies in my family so as I looked at all the herbs and spices and peppers and veggies I thought "That is all the stuff I eat!" I have been watching everything for the past month. I have had some great improvement but still have issues. I had a great day on Monday all day. Then later that evening the family watched a movie together(at home). At the end of the movie it all started up again-my lungs feel like they fill up with fluid and I cough and clear my throat and wheeze and rattle. I quickly took benedryl but it didn't help and I was up all night because I can't lay down because I feel like I am drowning. I think it was the asprin that put me on this road to start with (I don't take it anymore). My question is this, "why do I have sudden attacks when nothing has changed?" I did not eat anything, no new smells, didn't get out of my seat, nothing, the night of the movie. It has me so frustrated.

    Thanks to all of you for adding to this site and giving us the gift of your experiences

    mer
    • CommentAuthorlindyd
    • CommentTimeFeb 12th 2009
     
    Hi mer
    Welcome!
    As you have probably read we all have a "tolerance level" and normally react when this level has been reached. its a bit like having a bucket with a tiny hole at the bottom.. if you keep putting liquids into the bucket it will begin to fill but the small hole will allow some of the liquid to escape so it will never overflow.. However if you fill it up too quickly then the combined fluids will build up and overflow..
    If we encounter to many toxins in a short space time in foods, perfumes, skin products and our body does not have time to detox them then we will go into a reaction. So on one day we may be able to eat something moderate sals because our toxic load is low the week we may not be able to tolerate it because we already have too many toxins in our system,
    Many people who have salicylate problems also have problems with sulphites and other food and airborn chemicals too adding to the toxic overload.
    I also have problems with smells from fabric conditioners, perfumes etc. Many of them contain methlyl or benzly salicylate in large quantitites. In the UK Comfort fabric conditioner is the worst. My daughter uses this and if I am with her for more than day I start to react and get an upset stomach the next day. It smells really strongly and I can even smell it on other people when I am out shopping. I generally get a mild reaction after I have been out shopping in the Mall on Saturdays after breathing in other peoples perfumes and condioners.
    I asked my hospital allergist about this and he said he had not heard of this reaction but I definitely get it!
    The reaction you got was likely to have been a build up reaction.. you did not say what you had did on Monday, who you were with, what you had eaten but I am guessing that in the 48 hours before you probably encountered people wearing perfumes, using fabric conditioners or ate some foods containing sals or sulphites etc..
    HUGS Lindy xx
    • CommentAuthormer
    • CommentTimeFeb 12th 2009
     
    Hey Lindy!

    Thanks for getting back to me so fast. I work in our church nursery on Sunday evenings and was home all day Monday but I probably did do laundry during those couple of days. When I dry our clothes the smell overwhelms me but no one else can smell it. I am planning on trying something else but only after I finish what I have. I try to dry clothes while I am away from home but someone else is home (don't want any fires). I also was sitting next to an open window (opened to let out the burnt popcorn smell, could that be it?). I live next to the freeway so it is not the best air quality. Tonight my daughter walked past me with vanilla body spray and I almost choked. This whole over smelling things is tough. I almost never noticed perfume before and I used to use double amounts of fabric softener. My mother started using perfume free products years ago because she started itching and my son couldn't touch fabric softener or perfume stuff as an infant so I am thinking there is a family link as well. I have also found that cold air, cold drinks, cold food seem to trigger me as well. I pretty much live on grilled cheese sandwiches and pasta. I did have homemade fried chicken and instant mashed potatoes for supper that night. The potatoes may be cause. The chicken only had flour and salt on it. Also, I use margarine. Should I only use butter?

    Thanks Lindy!
    • CommentAuthorlindyd
    • CommentTimeFeb 12th 2009
     
    Hi mer
    It sounds like there could be many culprits! Could be the fabric condition, could be the perfumes, could be that you are like me just generally chemically sensitive...
    One thing that stands out is the instant mashed potato and this could have been your trigger as metabisulphite does cause reactions such as you described...it is absolutely LOADED with sulphites (metabisulphite) ...avoid it like the plague... cook and mash your own potato ...and avoid anything else prepackaged like this.. particularly any dried friut such as apricots...
    Love Lindy xx
    • CommentAuthormer
    • CommentTimeFeb 12th 2009
     
    Hey Lindy,

    I didn't even think about that they could also be made with any variety of potato. I have been making homemade mashed potatoes but on that evening my dd made supper and she made the instant mashed potatoes. I have been on benedryl since then and seem to be getting on top of this again. I have looked at the recipes and I am planning on trying them. Thanks again for your direction and I will be on here regular now.

    Have a GREAT day/evening!

    Mitzi (mer is my initials)
    • CommentAuthorlindyd
    • CommentTimeFeb 12th 2009
     
    Where are you Mitzi? As you say vacation rather than holiday I am guessing you are in the US or Canada.
    I am in the UK..
    Lindy xx
    • CommentAuthorTeefee61
    • CommentTimeFeb 13th 2009
     
    Whitepuddingsupper, hi, I've just seen your post about getting pregnant while having sal probs.

    In my case, pregnancy triggered my first reactions. I was actually worse in the first 5-6 months, but then got better, and at the time all I knew was that I couldn't tolerate aspirin, so I carried on eating most things. It was fairly tough, because I was so itchy, but I was allowed to take the antihistamine fenistile (I don't know what it's called in other countries). The majority of antihistamines can't be taken in pregnancy, so that's something you'd have to be really careful of. You'll have to be careful with supplements to make sure that you're not malnourished. Some you'll need to take, such as folic acid, as our diet probably doesn't supply them, and the lack of it can lead to malformations. Others you'll need to avoid, such as cod liver oil as it contains the retinol form of vitamin A.

    I wasn't in a reactive stage during my second pregnancy. My first daughter was born well, despite the allergies and antihistamines. However, she was (and is) a overactive little tom-boy, and has higher than average testosterone for a girl. This may have been cause by the sals in my system, which lead to the production of adrenaline, and then testosterone.

    So you'll have to be careful with your nutrition, but apart from that, it should go well!

    best wishes

    Teresa
    • CommentAuthormer
    • CommentTimeFeb 14th 2009
     
    Hey Lindy,

    I am in the US. I live in the state of Tennessee. I have been doing well for the last couple of days. My husband tried to be nice to me and bought me some white chocolate for Valentine's Day. Has coconut oil, palm oil, palm kernel oil, artificial vanilla and caramel flavoring. It was a nice thought. My son did have white chocolate the other day that was all natural no artificial stuff but had coconut in it. Maybe if I could find it without the coconut that would be the brand to go with. I did have homemade fudge at a work get-together and I did fine with it.

    While I was gone with friends last night my family went out to eat and my daughter had a reaction to something in her hamburger (never happened before as she doesn't have food issues) and of course I had the Benedryl with me. I will definitely make sure to leave some home from now on. She had a slow time waking up today and my heart skipped a beat as I thought what if she quit breathing and I didn't know. She was fine of course but it concerned me.

    How has everything been with you? Oh, I have another question. I have seen on here somewhere about someone drinking warm/hot water. Why? I have started soaking my feet in my foot bath with epsom salts. Not sure if it is helping but it sure feels good and it relaxes me. What about Magnesium supplements, do they help?

    I hope you are having a nice weekend!

    Mitzi
    • CommentAuthorlindyd
    • CommentTimeFeb 15th 2009
     
    Hi Mitzi
    Busy weekend.. I did a Car boot sale this morning (a bit like your garage sales bit you take your stuff in your car to a school playground and sell it).
    No idea about the warm/hot water.. perhaps whoever posted it will reply :-)
    I take magnesium supplements.l. we do tend to be deficient in all sorts of things as our diets are so poor.. so any supplements you can tolerate are good thing..I take Quest multinutrient and GNC magnesium/ zinc/calcium. Also Quest probiotics.
    I did do a trial on the epsom salts but I have a problems with sulfur/sulfites and had to stop as they seemed to be giving me an upset stomach... (when you soak they still go into the bloodsream thru the skin so can cause stomach problems). some people here have had good results with them tho.
    Pleased your daughter is ok now...kids are a worry aren't they. Mine are grown up but I still worry about them.
    I do ok with a small amount of green & blacks organic white chocolate.. not sure if you can get it in the US.
    mmmm fudge.....
    Love Lindy xx
    • CommentAuthormer
    • CommentTimeFeb 16th 2009
     
    Hey Lindy,

    I will try to find the post who mentioned the warm/hot water and see if I can ask them. I found some dark chocolate (my favorite) that is all natural and I had a small amount and seem to be doing fine so far. I have gone almost a whole day today without Benedryl. :) I made a roast with salt, onion, and garlic in a pressure cooker and it turned out great. I didn't think it would taste "right" without all the other seasonings that I used to put in it but was quite surprised. I think that even though all this frustrates me it seems to have reawakened my taste to the simpler flavors. I made a simple noodle dish for a work get-together and I had most of them asking how I made it. Funny, it was just noodles, butter, salt, and garlic. Maybe everyone should start eating simple. We have an organic store where I live and I am planning to go there to see what all they have. Do you have any favorite foods that you make that you feel "good" after you eat them?

    I have three children, my oldest is my step-daughter who is almost 26 (her and her hubby are expecting in Sept.) My next is my daughter who is 17 and then my son who is almost 14. It won't be long and they will be gone. :( I will have to bet used to that.

    Mitzi
    • CommentAuthorlindyd
    • CommentTimeFeb 17th 2009
     
    Hi Mitzi
    Ooohh a grandchild to look forward to .. how lovely :-) I have five - the first was really exciting.. he is now 10.. I don't know where the time has gone! We got our girl grandchild we all wanted on the fourth one.. shes 6 now and a real girly girl!
    It is a wrench when your last child leaves home..I remember feeling like a lost soul when my younger daughter moved out but you soon adjust and build a new adult relationship with them..and then there is the grandchildren :-)
    Unfortunately due to my added sulphite problem I have to eat everything totally plain.. I can't have onion or garlic or any spices so I have to eat plain meat, plain rice, plain potatoes.. the only flavouring is salt.
    As you can take garlic and onion then you have escaped the sulphite issues which many salicylate snesitivie people have.. so feel blessed :-)
    You are right.. the taste buds do soon adjust and you learn to appreciate more simple flavours. Believe it or not plain rice actually has a lot of flavour!
    The only "feel good" food I get is a very small amount of organic milki chocolate. It has sulphites so I can only have a couple of squares otherwise I react but it is lovely the small amount I can tolerate :-)
    Organic stores are great - my youngest daughter lives in London and there is a fabulous one near where she lives..I always go there when I visit. We can get some organic stuff in our supermarkets here in the UK which is good.
    Do be aware that organic fruit and veg have a slightly higher salicylate level than non organic. This is because salicylate is the plants "defence" chemical and organic plants need to defend themselves more than non organic ones which have chemical sprays to defend them.
    We have had a discussion here on the the pros and cons of eating organic. Some have decided to go with the non organic. I have decided to go with the organic as I really don't want the artificial chemicals. If I eat non organic I always wash it well and peel it.
    Love Lindy xx
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 18th 2009
     
    Hi,new to the forum,live in Alabama.I have a unique problem.To make a long story short,I saw 4 specialists,ent,internal medicine,allergist and holistic md,oops six,also a dermatologist,suffering from,asthma,hives,severe utcaria,my feet swelling and itching so much I could scratch the skin off.All of the doctors except holistic just gave me no help at all except an epipen.It was getting scary because besides my lip and tongue my throat was swelling.Anyway after about a year of searching the internet in the meantime I was keeping a food diary for the hoilistic doctor I came across a comment accidently about beeing allergic to toothpaste,This led me to figure out about the sals.But here is the unique problem.I am a florist.I work with a wholesaler and have a side business doing weddings.I kept swelling after doing weddings when I hadn'y eaten anything.Evidently flowers,especially roses were affecting me.Now if I am careful about what I eat,I am able to handle the flowers.Does this make Sense?I have been in this business about 35 years.Wonder iif it just built up after all these years.I
    • CommentAuthorlindyd
    • CommentTimeFeb 19th 2009
     
    Hicjean
    Welcome!
    I'm in the UK.
    How distressing for you to find your job is causing you symptoms :-(
    Some of us here do struggle with smells.. I have particular problems with perfumes and fabric condititioners with salicylate added. I also no longer like the smell of flowers.. I have some hyacinth bulbs indoors at the moment but have had to move them to the kitchen as I cannot tolerate the smell.. I have learned that if I don't like a smell I should avoid it!
    I no longer have the link but I did read in my reasearch that plants do give off salicylate into the air when they are under stress.. and I guess cut flowers are definitely under stress...salicylate is part of the plants defence system...
    It's also logical that if you watch what you eat then you would be more able to tolerate the flower smells as salicylate symptoms are cumalative.. we all have our tolerance levels and if you already have a fairly high level in your bloodstream a little more can then make you react.. but if your levels are already low then you are not so likely to react...
    I have also found that I have become less tolerant as I have become older..and even more since the menopause...so if you have been in the business for 35 years (I am assuming you are female !) then you will be 50+ also...
    Could you wear a mask and gloves when working? better to look silly than have a reaction :-)
    Love Lindy xx
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 19th 2009
     
    Yes,I am 51.Started working with flowers at 15.The wholesaler I work for during the week has been in the same building about 100 years.High concentration of chemicals.They cut lots of flowers every day.Thousands sometimes,but the most trouble I have is weekends when I work on weddings.Sometimes I can wear gloves but some flowers are so fragile and small its hard to handle them.They also tear gloves when they have thorns.But I can handle it knowing what it is and how to control it.Two years of frustration trying to find out what was wrong was the hard part.I wish some of these doctors would get more educated about this and try to address causes of symptoms instead of just treating symptons.I can eliminate symptoms now,before they wanted me on antihistmines for morning,another for night,asthma medicine,and carry an epipen.All unneccesarry now.So glad to find other people who relate.Love,Jean
    • CommentAuthorlindyd
    • CommentTimeFeb 20th 2009
     
    Hi Jean
    Unfortunately the large drug companies are in control of our medical services not the medical professionals.. drugs are big business with huge amounts of money involved and the doctors are part of this.. they get paid extra for prescribing certain drugs....it is not in the best interests of anyone except the patients to find out what the causes of illnesses are or even to find non drug treatments.. there is no money in it for anyone :-(
    very very cynical.. but true....
    I had a long discussion with my hospital Allergist at southampton recently and he confirmed that there is no money available for research into ss....and no research or trials are planned...Apart from one daily antihistamine which I need to keep my symptoms at a manageable level I have chosen to take the non-drug route to dealing with this...
    Pleased to hear that you are managing to control your symtoms..
    Love Lindy xx
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 20th 2009
     
    Dear lindy,I agree completely with your assessment of drug companies and doctors.Know about some of this first hand,The city I live in has large medical hospital UAB) University of Alabama Birmingham,It is all that Birmingham is any more,It takes up a large part of trhe city.There probably would be no city without it.They do lots of research on everything,I will be checking to see if maybe something will come up.There aree lots of students and lots of research.This would be some great research for some students.Before I found out my problem,I was talking to some people who have had some symptoms like these for as long as 10 years and had no idea what was causing it.These people need to know,This is life threatening .They were miserable.People need to know.Thanks for sharing with me,Love,Jean
    • CommentAuthormer
    • CommentTimeFeb 21st 2009
     
    Hey Everyone!

    I so agree with the drug company assessment. My mom-in-law ended up in the hospital for 5 days last month all from her bodies cumulative reaction of her 17 medicines. Came out of the hospital with 6 less with 2 others that she was coming off of. Just a bunch of small doses for a bunch of little things. It almost killed her. Her kidneys started shutting down. I think in the long run we are all better off the more we can control this through diet and environment modification and less medicine.

    About the whole scents issue. I went to a regular grocery store the other day with all the choices in the world. They had so many smells going on at once in the deli/bakery/produce section that I thought I was going to be sick. It got better the further away I got from that section. I usually shop at a small local discount grocery. I was able to get some acceptable foods such as the malt vinegar and the pure maple syrup (yuck I don't like it) I also found some sandwich ham that has been minimally processed. No MSG, no hormones, no nitrates or nitrites, no smoke flavor. Just pork, sugar, water, salt and lactic acid (small amount). It was nice to have some ham with my cheese. But, I have overdone it. I have had too many low items and it built up. I was having a great week, much less Benedryl this week. I am back on track today.

    Question? Where can I find cashews that are not roasted in peanut oil or do I need to buy raw cashews to make cashew butter? Also, what is the deal with sugar? It is on the good list but when I use it I react?

    Mitzi :~)
    • CommentAuthorTeefee61
    • CommentTimeFeb 21st 2009 edited
     
    Hi everyone,
    First of all I express my sympathies to everyone who has this particular intolerance. Mine have tended to change along the years (along with my environment), and although I seem to be able to tolerate smells at the moment, I have had sensitive (tabacco smoke can set me on a wheezing coughing fit for hours).

    But to everyone who thinks that it is the drug companies which organises medical responses, I must tell you that this isn't the case. Doctors are not, and must not be, paid to prescribe certain medicines. This would be highly unethical. They have tried to do that in Portugal, but any doctors and drug companies involved in such a scam have been prosecuted. Likewise in the UK. I don't know about elsewhere.

    However, drug companies do fund medical research, although researchers must declare their interests nowadays if they are paid by interested parties. Research carried out is affected by available funding and this affects the body of knowledge. There IS funding available from non-pharmaceutical sources, but what drives the agenda of this funding is the perception of social importance as well as the interest and knowledge of those carrying out the research. The top priorities in research are not us (we are a tiny minority) but the major cause of death; heart disease, cancer, diabetes, aids, etc. The big problems that working doctors face everyday are these major diseases, plus stress, depression etc. Our problem is that our condition is poorly researched, poorly understood and hardly figures in medical education at all. We are not a significant group (or may be we are and no one knows it yet).

    My husband, who is a highly ethical and attentive doctor, always doing courses and getting up to date, and who has done alternative medicine courses too, doesn't have much idea about my problems even though he has lived with me and my problems for years. His medical actions, and those of all the doctors I have met, is not conditioned by payment from drug companies. However, they don't know too much about this condition. What my husband knows is what I've told him/ sent him (and he spends EVERY WAKING MOMENT getting up to date on a variety of medical conditions). Even before I went to the immunologist, he said (correctly) that I shouldn't expect to find out too much more than what I know. So our problem is not medical corruption, but lack of knowledge. The sad truth is that our condition is important to us, but not to the world at large.

    I know all of us have struggled with the medical profession to get accurate diagnosis, and that we have fought against ignorance and sometimes apathy, but this is no reason to class "the medical profession" as a corrupt bunch of incompetent fools. They are not. There is as much variety in the medical profession as any other. And this attitude of mistrust and cynicism doesn't help us at all.

    I have said before, and continue to think, that if we want to change something, we should start taking action. Raise awareness, raise funds, get some research done. Sounds like a long shot, but we would not be the first group of people who have tried to take control and get the type of institutional response we need.

    Back to the moon walk...

    Teresa X
    • CommentAuthorlindyd
    • CommentTimeFeb 21st 2009
     
    Hi Teresa
    Sorry.. no intention to run down ALL doctors.. in all professions there are some very dedicated people and your dh certainly sounds to be one of them.. I sincerely wish he was my doctor..If only all doctors were like him.
    I'm sure some people have some very good doctors....Regretably my experience of doctors in the UK has generally been poor.I have only had one fairly good doctor in all of my 50+ years and unfortunately he has retired early from ill health! A number of years ago my fathers doctor dismissed my fathers chest pains as "indigestion" and refused to send him for tests.. he died of a massive heart attack a few days later....when I went to see my gp she openly laughed at me when I suggested I was reacting to apples and mint and I was later diagnosed as ss...more recently the same doctor attended my mother who was very ill and in pain at my house before Xmas and decided she was not "ill enough" to be admitted to hospital... and a few days later she was admitted by her radiotherapy team and the staff were amazed that she had not been admitted earlier...and of course you know what happened...so please excuse me if doctors are not my favourite people..I am biased...
    My understanding is that Doctors Practices in the UK are paid by results according to how many of certain drugs they prescribe such as statins....they have targets..so rather than "prescribing" diet/exercise and a healthy lifestyle they immediately prescribe the tablets... I guess its different in Portugal..
    Sorry but I am going to remain cynical...drug companies are out to make money.. they are businesses.. they are only ever going to fund research for something they can make money out of....there is no money in prevention...only money in treating symptoms...only money in drugs....
    Please stay young and postive and forge ahead with your action... we need young positive people.. I'm just old and cynical :o)
    Love and Hugs Lindy and for your lovely dh.. xxxxxxx
    • CommentAuthorTeefee61
    • CommentTimeFeb 21st 2009
     
    Hi Lindy,
    I'm so sorry to hear about your terrible experiences, especially the situation with your father. I suppose nearly all of us on this forum have had the experience of being misdiagnosed. Our problem is very under-researched and doctors don't have much of an idea of what's involved.

    The system in the UK is that GPs have targets, but this doesn't involve prescribing drugs. Their targets are about making sure that patients are seen quickly, that the number of heart attacks is reduced, cholesterol lowered, etc. Preventative care also figures in the targets (routine check ups at certain ages, etc.) On the negative side, they are expected to deal with as much as possible in the GPs surgery, rather than refer patients to A&E. They are also discouraged by the system from prescribing tests and analysis. This means the decision whether to refer a patient is partly financial, partly based on the GPs insight.
    What many people don't realise is that being a GP is as much an art as a science, and that it can be incredibly hard to diagnose some situations, even with all the tests in the world. They spend long hours with patients with more socioeconomic and psychological problems than anything else, and yet suddenly may need to pick up on a serious case when they're exausted and often haven't stopped for lunch. Then they have to cope with the expectations, complaints and aggression of a huge number of people, and they develop their own human, sometimes flawed, coping systems. As they are not robots, they may misdiagnose, appear unsympathetic, laugh inappropriately, and so on. But any doctor I know (and I know plenty in the UK and Portugal) is mortified if they miss something serious.

    All of this has little to do with the drug companies. A lot of money for research comes from them, and yes, its business, and ofcourse they have vested interests. Luckily, there are other sources of funding which are not related to drug companies too. If we do ever get together as a group to raise awareness and get research done, it's the other sources of funding we'd have to aim at. (Actually, the first thing would be to try and ascertain the extent of the problem. I don't think any one knows).

    I'm also getting older, I turned 48 a few days ago (aaaaaaaagh, nearly 50!) But I refuse to be wholly cynical. I treat doctors as advisers with insight and understanding in certain areas.They are also gatekeepers to services that I may need (although the system is geared to resisting offering these services). If they don't have the information I need, or I don't trust the information, I go to another adviser.

    You seem so positive in so many ways, Lindy. You inspire and help so many of us in this forum! You're hardly an old cynic!!!! (not even old... 50 ish???)

    love

    Teresa xx
    • CommentAuthorq-ki
    • CommentTimeFeb 23rd 2009
     
    Hello all,

    Thought I would finally put it all down..the story of how I became this way. Maybe it will help someone else...I don't know as it is such an odd story.

    In my 20's in college I was a sculpture major, and part of what this ment was that I spent hours in the art barn working with clay. One day after 6 hours of heavy work in the art barn, where I came out covered head-to-toe in clay, my hands went totally cold and numb from the elbows down. This was the beginning of the decline, and my endless visits to doctors. After this I was diagnoised with tennis elbow and put on naproxin. This did nothing to help me. Slowly over time my symptoms spread to all my muscles, and eventually into my diagestive system. During this time I continued to work with clay and various other organic materials including doing body painting with spices, and flowers (I would use my nude body as a paint brush, dipping myself into various organic pigments, and making impressions on paper and walls). Over time I was diagnoised with IBS, Fibromyaglia, and eventually even vaginal eczema and thyroid disease. I continued my education and got a master's in sculpture hoping to eventually teach Art at the college level, continuing to build a career using organic materials (My MFA show included 24 pounds of cinnamon, and 500 pounds of corn). I just kept getting sicker and sicker and no one knew what was wrong with me. One doctor told me that if I didn't figure things out soon, I was just going to continue adding more and more disorders to my list as the years past (and this proved to be true).

    The turning point came when someone told me about the gauifenisen protocol which requires you to be sal-free in your personal care products. I tired it and within one week my symptoms all disappeared. Then they slowly all crept back in over the course of about 6 months. I stayed on the sal-free personal care program for about 4 years, and completely stopped making art of any kind, as I realized the materials I had been using were the source of the problem. I got better but only to a point. Then I discovered this website about 7 months ago. I have been sal-free in my diet for 6 months as of today. I no longer have IBS, my vaginal eczema and thyroid disease are almost gone. Warmth feeling, and circulation are slowly returning to my muscles all over my body. Even the texture of my whole body has changed. I no longer feel like rubber or butter, my whole body is becoming soft. I believe that within the next 8 months I will no longer have fibromyaglia and will be off of all my medications. Overall my pain has reduced by more than 80%.

    When I look back at my days as an artist, and all the organic materials I bathed in I feel it is a miracle I am alive. It feels like death is leaving my body. I am so grateful to still be here, living, and becoming healthy.

    I do plan or returning to the practice of being an artist, but will not be using organic materials. Also I will make sure I am wearing a space suit, so that my body doesn't have a chance to become overwhelmed with whatever materials I use (I am thinking of working with plaster, salts, sands and minerals). I will never use my beautiful precious body as a paintbrush ever again!

    Grateful to be alive!

    Q-ki in Southern California
    • CommentAuthorTeefee61
    • CommentTimeFeb 25th 2009
     
    Q-ki,
    What an amazing story! We have all come to know our sal sensitivities in different ways, but what is most moving about your story is that you had to give up so much of who you were, your art, in order to overcome it. It's a story of hope and courage, and it's inspiring (sorry, hope you don't find it embarrassing that I say that, but it's what I think).

    Another important aspect is that people equate natural and organic with the good and healthy, and for us sal-sensitive folk, that just isn't true.

    I really hope you manage to return to your art soon. Stay in touch!

    Tx
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 25th 2009
     
    I agree with the earlier statement that there may be alot more people out there with these problems.Before I found out what was wrong I spoke to people on forums begging for answers that had our symptoms.I also was trying to eat healthy and eating organic all the while not realizing that was even making it worse.Some people have been sufferring for years.No telling how many people are affected by this.I was eating aspirin like candy everyday for all my aches and pains and I know now how bad that was but never suspected.I;vee taken it for years.It would be good to get the word out about this.Jean
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 25th 2009
     
    I thought about something else.I had terrible ecema on the bottom of my foot on and off for about 5 years.It was really bad and miserable at times.Since I found out about the sals and have it under control,it completely is gone,Not one incident in three months from sometthing I've had relentless for years.My point is there may be not any research because we are a small(known)group but what about people with ecema.That is huge and this could be a clue to their cure and maybe for alot of other things also.Jean
  5.  
    Hello peeps,

    I know some of you have mentioned taking antihistamines and some have talked about having symptoms days later. Do some of us have allergies to sals and some intolerances? I certainly feel that I have an intolerance as my symptoms come hours later.

    We were talking about saliva thing a few posts back. Well mine finally erupted! I was lying in bed, mouth filling with saliva and the next thing, I was being sick everywhere, loads.No warning. I even woke my husband from a drunken stupor! Only thing I could put it down to was a rhubarb and custard sweet I had. Bad lady that I am. I'm coming off sugar though, I'm heeding your advice. That's def where my itchy skin is coming from and it seems to give me quickened heart rate too.

    I tried potatoes though again, I always thought they gave me stomach cramps before but then I thought I always had black pepper on them so maybe that was the problem but no! Had terrible stomach pains.What is it with potatoes do you think? I think I'm ok with rice, still not certain yet.

    I'm going back to fructose malabsorption dietician, well the practice anyway. I asked for someone who knows what they're talking about this time.....
    • CommentAuthorTeefee61
    • CommentTimeFeb 26th 2009
     
    I'm ok with potatoes, but it seems some people on this forum are not. They are low sal, not sure about sulphites. Is it related to latex intolerance? Anyone?

    BTW I don't think you're safe with a rhubarb and custard sweet. Colours, flavours etc.

    I've found my saliva changes a lot too, with intolerance, going from very dry (in patches) to over the top production. Wierd. It's ok when I go low sal.

    Tx
    • CommentAuthorlindyd
    • CommentTimeFeb 26th 2009
     
    Proper natural potatoes you buy yourself are ok for sulphites but processed one are definitely not. Sulphites are almost always used in pototatoes processed in any way /fries /chips/istant mashed/crisps etc....used to stop them browning. Even potatoes in restaurants are almost always sulphited..
    Some people have problems with potatoes as they are part of the nightshade family.. it is quite a common intolerance...
    I'm ok with potatoes thank goodness... organic oven chips yummmmm (they don't sulphite organic ones). Having them with chicken tonight :o)
    Lindy xx
    • CommentAuthorq-ki
    • CommentTimeFeb 26th 2009
     
    Tx,

    Thank you for your kind comments...Not only did I have to give up my dream of being an artist, but of teaching Art. All Sculpture professors must teach how to work with clay, it is a fundamental to the field. I can never work with clay again, it is clearly full of sals.

    It is okay though, it turns out I would rather run my own business anyway...it is funny how life takes you in places you would never imagine. It is just a little crazy that I have a pile of degrees that I can't put to direct use.

    No regrets in the end!

    Thanks!

    q-ki
    • CommentAuthorlindyd
    • CommentTimeFeb 27th 2009
     
    Hi q-ki
    I can think of no reason why clay should contain salicylates... it is mineral not vegetable. ONLY plant materials naturally contain salicylates. Sometimes something has preservative chemicals such as methyl or benzyl salicylate added (eg to fabric conditioners or perfumes) ..but I can think of no reason why these should be added to clay...please correct me anyone if you or anyone else know differently...
    What clay does contain is SULPHUR .....Many people who are salicylate sensitive are also sulphur (and sulphite) sensitive. ... I am one of them.
    I have just done a bit of Googling and it is possible to get a sulphur free clay..I dont know if this would be suitable for the kind of work you do.. it might be worth doing some research and checking it out.
    Love Lindy xx
  6.  
    Yes!! Rhubarb and custard sweets are definitely not the way to go!! I was still kidding myself!

    I was making the potatoes myself with just salt but I think you're right about the old nightshades..... I can have a handful of crisps but thats it.

    I'm currently only eating oatcakes, meat, fish, bananas and rice. I can't have other foods like pears etc cos of fructose malabsorption. I worry about the effect it will have on my daughter seeing me eating so little. I am trying to make her tasty meals but its not easy when you can't really taste it!

    I'm still feeling sorry for myself a bit. I could just of handled this diet if i could of eaten potatoes!!
    • CommentAuthorTeefee61
    • CommentTimeMar 2nd 2009
     
    I really sympathise, and hope that you will be able to eat more in the future. At my worst, a few years ago, I was down to chicken and rice, all day everyday. I dreamed of eating broccoli, soup and especially bread.

    I did get better for a few years; in my case it's definately cyclical. I hope you improve too.

    Can you eat lentils? What about cabbage/ beans, etc.?

    Txxxx
  7.  
    Yes teefee is just went back to dietician and she suggested a few lentils and cabbage just like you!! I had a feeling i couldn't eat pulses but I can't remember why not.......I shall def give it a go though.
    Thanks xx
    • CommentAuthorTeefee61
    • CommentTimeMar 17th 2009
     
    Good luck! Stay in touch!

    Teresa