This just seems so surreal in a way because I just ate what I wanted last year and now I can't even drink a sip of orange juice without getting a reaction.

I'm reminded of when I got into 2 car accidents 2 years in a row in 1998/99..I got rear ended both times and started getting the fibromyalgia type symptoms and was diagnosed with it by a rhumatologist. I couldn't work anymore so I ended up having to move back home with my parents at age 29.
I ate what they ate, which is gluten free of course. I never really liked eating breakfast so I always had a meal replacement shake but other meals for the day included plain corn tortilla chips sometimes with a small amount of cheddar cheese, and maybe black olives, and for supper my mom would make things like tofu patties, home made soups, and small servings of vegetables. My parents always kept a garden, fruit trees etc to reduce cost..they stored potatoes, apples etc in a root cellar over the winter. I grew up vegetarian lacto/ovo. My mom never bought ready prepared things. She always soaked beans and cooked them.
Maybe once a month I would get fast food like a fish or chicken sandwich but overall I was in really good health and didn't really have any pain. 2 years later I met my husband and got into all of the processed stuff and think maybe I've overloaded myself??


Well...I feel crappy too because I ate some gluten free bread and I guess I just can't at all.. my mom also used to get and grind her own wheat and make her own bread...I can remember going to my grandmothers when I was 5 and eating white bread and having it give me canker sores...

I will just have to do this food challenge I guess...I'm not thinking too clearly right now ugh..

Thanks Fabi.

Hello lizzbethsue.

You ask.... "Does anyone experience recurring "spots" that seem to come up over and over again in the same place? It's almost like there is something working itself out of my skin..."

This is exactly what happens to me. Red spots (not itchy though) appear on my face, either side of my nose, for a day or so then go away. They often contain a fluid and have a very thin head. Only one or two at a time but they always come back in exactly the same place!

Despite being diagnosed with Rosacea by my dermatologist, I feel that certain things point to a Salicylate sensitivity. For example, I had a very bad reaction to Trimethoprim (which is a drug from the salicylate family) so I decided to do the elimination diet and, so far, things are getting better.

Sally

Was tossing all of this around in my head...had anyone here heard of people with fair skin/blue eyes and light or red hair/freckles needing more analgesic at dentist or for surgery? I'm very fair/blue eyes/red hair and have always required more than the average person. I was reading some connection with that and plants that contain natural opiates as well...
Something to do with the MC1R recessive gene...also experience more pain than the average person. I asked my current dentist about this and he said he had heard of the need for more analgesic.
Wondering if this has something to do with ss sensitivity and how many people here are fair like me and have made this connection if there is a connection...
I'm primarily i guess "northern european descent" norwegian, scottish, irish..

Hi lizzbethsue

Thank you for the information regarding dermatitis herptformaris. This is interesting as my spots very often look like little blisters. As I said, I only get a few at a time and nothing as bad as those shown on Wikipedia, thank goodness. But my skin is very fragile and I'm rarely without a couple of these darn things on my cheeks and chin!

Did cutting out gluten help you very much?

HI,
I am new to this site after I was directed here from a comment left on my blog when I was talking about my salicylatye free diet! My story is a bit complex but to cut it all short. I have brittle asthma but also am very allergic to aspirin. My respiratory consultant coldnt get a handle on my asthma control and thought my aspirin allergy may be sapnning over into the foods I am eating so put me on a low salicylate diet. This initailly worked and helped him control my asthma better as he was not dealing with extra allergies. This was five years ago. I am know even more restricted to have to eat a basically salicylate free diet.

I find this diet really hard as I have a huge appetite and love food. I have never been a fussy eat and will eat anything but now I am so restricted. I do find that I do lapse sometimes and will eat what I call condemned foods but they just make me feel awful.

My reactions vary depending on the amount of salicylate. But I tend to go bright red and hot in my face and upper body. My chest gets very tight and wheezy and I build up loads of mucus and in my throat and chest. I notice it immediately if I eat salicylate foods and even when I use moisturiser (although i tend to get a skin reaction rather than my chest!!!)

I wanted to try and be desensitized to aspirin to see if it would make me less allergic to salicylate s but unfortunately my dr said I am too allergic to even contemplate it. But as hard as this diet is to follow and as restrictive it is it does make a huge difference.

Also if anyone wants to see my blog it is at www.wheexytux.wordpress.com

Wheezytux x

Hi wheezytux,asthma is one of my symptoms,also excema,and I get that red flushed face many times but not always,and I cough like crazy,I think from the mucous you were talking about,but I have learned how to control it,and sometimes I reason out paying the price for something I want to eat,like tomatoe paste,I always pay for that so I really have to want it,I feel like the people here are friends because they truly are the only ones who relate to this and understand, Jean

Hi all. I am based in New Zealand and am 49.
About five years ago I started to have unexplained swellings particularly around the eyes as puffy bags. It usually came about during the night, so the first thing I did was replace my pillow assuming it was the culprit. Advice from my doctor was it was urticaria triggered by unknown causes and to take anti-histamines. Increasingly I had swellings/rashes at closer intervals. I visited an allergy clinic and had lots of scratch tests but no trigger was apparent.
It all came to a crunch point when I was in China on a working trip. I woke up in the middle of the night with my throat and tongue swelling up. Thoughts rushed through my mind as to what to do. I had seen a hospital just a few blocks away from the hotel. Should I go straight there and check in. The night before I had problems communicating with hotel staff when trying to get my laundry done, so didn't like the chances with the language divide. Also I had no idea of the room numbers for the people I was traveling with. I ended up taking a wait and see approach. Luckily the swelling went down after about four hours. I had ongoing problems while on the trip but no drastic reoccurrences.
Back home I revisited an allergy clinic and was asked to write down exactly what I had eaten for the last week. Within 10 minutes (nice one after three years of uncertainty) the doctor concluded I had a salicylate intolerance, and unfortunately there is no test for it. The next step was to minimize salicylate intake and then re-introduce it as food challenges.

Easier said than done as salicylates are in most fruit and vegetables, but the low salicylate diet was actually very similar to the evening people had in the 1960s. Meat, potatoes, peas and carrots but definitely no pepper.
Within three days the change was dramatic. No upset stomach, sore back disappeared, and I stopped snoring. The diet was very bland with no herbs or spices except: garlic, chives or onions. Salicylates are basically what plants use as a defense mechanism against disease. It is usually in the skin of the plant of the aerial parts of the plant. Plants in the onion family use sulphur based compounds to achieve the same thing. Vegetables that are peeled (e.g. peas) or grow under ground (e.g. potatoes & carrots) are usually lowest and spices are the highest (The diet I am on is very similar to Fengels diet for ADH kids only it goes further. Salicylates are what is in Aspirin.

Life became much easier when I read Sharla Race’s book “Salicylate Handbook” as it provides advice and listing of the salicylate content of most foods. Basically I don’t have any symptoms if the salicylate levels are below a threshold. I can temporarily raise the threshold by taking anti-histamines, but it takes about three days to reduce levels significantly, and up to two weeks to completely get rid of the salicylates out of my system.

Mostly I know I have reached my threshold when I feel a quick build up of wind, then my skin becomes itchy. Far better to avoid by being careful about what I eat.

I have started a high Omega 3 oil diet which I am hoping will achieve the same result as the antihistamines.

Mike

I am curious, my dh just came home with hemp oil which appears to be a great source of omega 3 and 6. I searched the threads but didn't see much on it. Has anyone tried it? I have taken it in the past but that was before I was super sensitive.

Hi my name is Lindsey I'm 21 and I've known for the last year that I had a sensitivity to salicylic acids although I never knew I was hyper sensitive until I arrived here in Afghanistan. I bought a facial product set (Olay) that said it was for sensitive skin and didn't appear to have any salicylates in it. Not even two weeks later I have cystic pimples and my entire face, chest, and back have broken out into little red bumps. It's been the most embarrassing and humiliating feeling to have people comment and say 'oh wow are you stressed, are you taking medicine, are you washing your face' and it's just the most God awful feeling I've ever had. I was talking to a friend about my allergy and she suggested looking at the products I was using again to see if I missed something. Well I did and lo and behold, there was that evil little word 'salycilate' in the ingredient list. I was so relieved and yet frustrated because I always try my hardest to stay healthy and not put any damaging things into my body and to have this one little sensitivity just drives me up a wall! Well it wasn't until I started doing research on what exactly salicylate sensitivity was, that I realized it's in almost ALL the foods I have grown up eating and up until yesterday, still do! I was horrified at the thought that all these years I've suffered from stomach disorders, asthma, low blood pressure, memory loss, skin problems, and the worst of all was waking up to realize I had wet the bed in my sleep, I was so shocked that I didn't even know what it was. I thought it was a night sweat at first!

To realize these are common symptoms made me so relieved because I didn't know what was going on and sincerely believed my body was just a non-functioning machine that was broke and always would be. So here I am ready to charge this on with all my will power and to better understand myself and maybe just maybe get a body that functions normally! If anyone has any thoughts on this, I'd appreciate it. I'm a little lost and alone out here in a world that uses that darn stuff in everything and I'm exciting to maybe find a solution and a support group to help me out with this thing I've struggled with for the last 10 years. Thanks guys, I'm so excited to keep everyone updated with my story as it progresses!

Hi Penny and lantonus
Welcome to the forum :o)
Thanks for sharing your stories...looking forward to chatting to you on the forum
Lindy xx

Wow, it is amazing doctors, especially dermatologists, are not more aware of SS - I have suffered for 15 years - the first year was the worst - I broke out in hives one day and suffered with it to the point of being unable to work and getting a horrible skin infection. I tried Gluten Free and sugar free but nothing worked. After 9 months, the diagnoses was "stress induced hives" and finally a doctor put me on prednisone - which worked at getting rid of the hives but I had to be on it for a year and that had it's own awful side effects so I finally went off of it. I was aware that stress did seem to make the hives worse but over the next 15 years I also discovered that paprika, msg and other "spices" "may" trigger hives and I cut those things out - and for a few years my hives were less frequent. But then I went through another high stress period in my life and the hives returned with a vengence - I tried everything (medicine wise) including valium (which I don't care for) - taking valium before a known stress inducing event helped somewhat but not enough to keep me from flaring. In the last 5 years I changed my diet to eating a lot more fruits and vegitables as well as more organics - I seemed to be getting worse.... One day my GP mentioned that aspirin caused hives in some people - since I had taken aspirin all my life and didn't see any direct correlation I ignored it at first - but then I started getting worse and worse, including hives that were causing my throat to swell shut (scary!). After one particularlily bad day I Googled "aspirin and hives" and stumbled upon one of the Salicylate Sensitivity sites - it was like reading a story about myself! I realized that my "healthy diet" may actually have helped put my SS over the edge! All those berries and tomatoes and vinegar on my salads! Aaargh. Not to mention the raisins and broccoli. It seems my healthy diet just tipped the scales. For the last few months I have been reading labels and reducing SALs - and am sure this is my problem. I wish someone had given me a hint before I got the skin infection and got all these scars...

Anyway, thanks for providing a space to learn and share.

LOL and live in Vancouver Washington (not Canada) sorry ....

I must excuse myself for not introducing myself..I have been around here since maybe last summer when I came across mention of salicylates affecting the body similar to my many problems. Since then I just have not had alot of time in the day to pack it all in..



I came " down " with a health crisis in 1975 after a round of antibiotics and then two rounds of a drug to eliminate round worms..



I fell fast.. I figure I had always had problems but it was on the high side.. ie I suffer from what might be diagnosed as manic / depression.. /prior to 1975 it was just the mania. I did not feel manic , just super achiever type A , But my adrenals were always compromised as I remember as a child feeling very good around food { although I became good at control so never ate too much too often } .. The first thing I was diagnosed with in 1978 after many, many doctor consultations was hypoglycemia.. My blood sugar never went up..



Looking back I now know it was the food ,, ie the allergy part that was making my adrenals stress out.. After having been off all offending foods for a few months now , I know that sign that I have eaten something wrong.. ie I get to feeling totally well.. I mean like life is no sweat.. my brain is working right, I am not tired and I can move properly.



My first symptom was a dead tired feeling and nausea.. That went on for another 33 years of hell as I tried different food rotation diets but of course never keying in on the offending foods.. Last summer I came across talk of salicylates.. I found the website www.plantpoisonsandrottenstuff.com but just could not let go of the fear of losing soo many foods again.. I had done my own take on an elimination diet in my 20s and had lost soo much weight I was terrified of going there again..



I had very little support ,, none emotional from family.. I have some friends who suffer as I do and have found some understanding alternative doctors.. It is such a shame I have to refer to them as alternative.. this is a real and very difficult illness and without supports where would I be.. near death I am sure by now..



I am also looking forward to a time where on the spell check on the computer all my words I use ona regular basis.. ie salicylate, hypoglycemia, chelation are recognised..



So I had cut out salicylates.. not all... but most.. I had started taking epsom salts soaks which helped immensely with my fatigue and my interstitial bladder pain. I still had bad digestion and was strung out emotionally.. I still felt like dieing I was in so much pain.



Then in January I had a crisis of severe exhaustion, sweats all day long and severe pain. after finishing a round of chelation.. Chelation is stressful to the adrenals and I was not taking hydrocortisone until a couple months later.. I was really scared as I should not have been getting out of bed , I had so little reserves..



I decided to tackle a total elmination diet with eliminating amines/ sulfur foods/ etc ,etc.



I started feeling better .. added in hydrortisone and stopped all of my supplements as they too bother me. Bit my bit I became aware that I was not eliminating all salicylates. I know now I am a super responder and cannot even tolerate rice/ millet but for taking the enzyme Phenol Assist.. My reactions are still as severe with only a pinch over that unknown limit.. I sometimes have to increase the number of enzymes and I am balancing that against going broke on their expense.



I now have some more normal days but that I can no longer tolerate the thyroid and hormone supports I know I do need. I am now 58 years old and trying to do some catching up on life after spending the most of it in bed..



I have put my hopes into a therapy called frequent dose chelation.. I have been tested for very high levels of mercury, lead and arsenic .. I tried intravenous and other forms of chelation without any benefits. This frequent dosing of the chelator has improved my kidneys immensely { Antibiotics were no longer working for my chronic ecolit infections and was only being maintained by taking a supplement called dmannose } My mood is better . According to some parents with autistic children they have gotten back to eating salicylates , etc so i am praying a similar fate for myself..



I am going to pursue this for a couple of years .. always doing some research to see if there is something else I can do.. I also would love to be able to travel again.. which is now impossible as I can only chicken that is boiled and not stored/ frozen for too long of a time .. ie without any amines..



I have a vegetable garden at our city plots and I am probably known as that nice but somewhat eccentric gal who only grows a whack of celery and parsley .. the only vegis so far I have found to be able to tolerate.. lol.. But I am semi enjoying it for the first time...



I long for those normal amounts of energy I get a hint of when I do react to something I am experimenting with{ which is still abnormal for me as soon after I get a low/ sweats, difficulty walking, pain etc].. It sure feels nice to be in control...!!



I am very glad to have come across this group.. and to be able to share and learn from you all..



nancy

I am from a city nearby to Toronto Ontario Canada. Even though my city has a well renowned medical hospital I have to go to Toronto to get support. The doctors I see , even though open to the newer approaches to my condition , had not heard of salicylates / amines.

I beleive my health problems to be genetically linked.. My father having had his bowel removed as his constipation due to irritable bowel was so bad. He reacts to perfumes, antibiotics, drugs etc. My nephew has been diagnosed bipolar and he as well is not interested in the food connection.

It can be a very hard thing to be a pioneer , make the drastic changes needed in order to follow any sort of elimination diet. Particularly, as in my case I was addicted to those foods.. The foods for me could give me a feeling of well being and even though I did not know it consciously, that subconscious drive to remain in control and on top of things kept me from facing my truth.. ie I am different and am a super responder and had to cut out alot of foods. . There I said it and i am proud.

People with sensitivities have gotten a bad rap .. in movies they are made fun of, doctors scoff at it and many still claim it is in our head. It aint easy being different. Plus having to go out of our way to find food we can eat.

I was also worried I would hate having to eat such a limited diet. I used to wince at the thought of eating millet, and the other foods I am eating were all foods i was not passionate about. Now I sit down to my meal and even though I am not salivating over the thought of eating it, I quite enjoy my simple meal.. Butter and salt to add on does help though.. wink/ wink.. I wouldnt mind another food for breakfast though.. and of course the worry of not getting enough variety and vitamins ... not good...

Hey Nancy...I was wondering where in Canada you were..my mom is from Ontario but moved to BC before I was born. I moved to the US 7 yrs ago with my former husband and thats when my health went downhill...
When I read some of the posts you have made I made the connection with some food making me "spun out" or "lethargic" ..
I'm very content to eat rice/beef/yogurt/apples/potatoes and a few other things knowing I won't be depressed. It's nice to be able to predict your mood by what you eat! To the new people coming in here, I know it seems bleak but it's comforting after awhile and you get very used to it.
I've now totally come off adderall..(one in a long line of meds I've taken over the years) and feel much better.
I have to question psychiatric practice of prescribing medication over control of mood with diet...(another drug company scam)? My dad was telling me about a book called "manufacturing depression"...interesting...

Yeah you do need a lot of money to live there LOL!! I love that place though! I didn't see a change moving within BC as my parents live 4hrs east in the Okanagan and that's mostly where I grew up..moved back to Vancouver in my 20's and lived there for 10 yrs also..
There is definetely a connection with me moving here and the deterioration of my health...I think there are many factors in play on this ie; different medical care and the way it is tracked here, I think food regulations are probably not as strict here..seems to be more "junk" and probably water and air quality. I would move back but is hard to start over when you're not feeling great!
I remembered something while reading another article on leaky gut which I posted in "bacterial overgrowth" which fits with the rapid decline of my health, my huge weight loss and food intolerances...
08/04 Funny...I just saw your post about computer tech degree..that's where I got mine in Vancouver...back in 95 ;)

Nancy, yes, I read your posts, and am glad you decided to share your story. I remember those times in bed, and feeling like I will never be able to travel again. But, now here I am, considering my next journey. Rita

Lindy, speaking of my next journey, I think I'm going to cut my losses and not travel abroad to visit your lovely island. I think the Lord has stopped me for a reason. I keep thinking of the story of Pocahontas who never returned from Europe. Even though my ss has improved, I still have a very weak immune system. I catch everything. It's also interesting to note that my 1st trip to Europe coincided with my full blown ss (foreign bacteria?!) I suppose I'll just have to enjoy the beauty of my own country for now! Poor me!!!

Hi all,

I've posted comments on the forum recently but thought I should introduce myself! My name is Deb and I'm 41 and live in West Sussex, UK.

Thanks to all of you for the great advice, support and information.

Here's to us all getting better and enjoying life to the full xx

Lindy,my friend you gave advice to is leaving for her trip to England,Scotland and Ireland, next week-end ,she is so excited,a two week tour and she;s never really been anywhere,can't wait until she gets back,it should be interesting,Jean

Hi Lindy,

So we are practically neighbours!! :o) would be lovely to meet up.

Deb xx

Hi all, I'm a 54 year old woman, living near Toowoomba, in south east Queensland, but originally from New Zealand. I really related to Mike's comments/story. I love Kari Kari. Is that where you live Mike? I've retired from primary school teaching as I really can't cope with all the chemicals in the schools/ fluoro lights, naughty children etc. I've has asthma all my life and was intolerant/allergic to milk as a baby. I have auto immune Hashimoto's Thyroiditis and take Oroxine and Tertroxin for it; though not to much effect. I'm troubled more and more by chemical sensitivities, food intolerances etc.. The chest pains trouble me. I'm carrying an unwanted spare 24 kg or so and in the attempt to embrace the advice in the Eat Fat, Lose Fat book, and using lots of coconut oil in recent days, I'm having more chest pains and burning skin than usual. I take an Aller-Eze tablet every day for the past six months, following an adverse reaction to Keflex anti-biotics. Lots of trips to hospital later to sort out the chest pains and I'm only now discovering the relevance of salicylates, amines, glutamates etc.. Sue Dengate, the writer of the Fed Up books here in Australia is pointing me in the right direction, but oh how I struggle with trying to steer through it all. Fatigue, lower back pain, digestive discomfort, headaches and chronic rhinitis are the current bunch of reactions, along with the aforementioned chest pains. Thank you all so much for your sharing. Kindest regards to all, Nicola

Hello everyone - I'm Alisa and I'm from Sydney Australia. My husband sufferes from ss. After 8 years of running around from gastro specialist, to phycologists we eventually were diagnosised correctly with SS and although it is hard to keep the diet on track - he definately feels better on a low sal diet! I notice that some of you are mentiong back pain - my husband has just today been to see his spinal surgeon who has said he has degeneration of the spine which could be inflamatory arthritus. A bit of a blow as we were hoping for a surgical solution! Has anyone used Glucosamine with any success here? I've hear it is good for arthritus and while we do the long 6 week wait for the rheumatologist i was hoping that it might help to give him some relief - but i don't want to make matters worse by making him thorw up every morning as well.

Also we've noticed that since he has been on the low sal diet when he does stray - the horrible symptoms, nausea, stomach pain, lethargy etc seem to have intensified. At first it would be one moring nad he'd be over it by lunchtime - now the symptoms can last for a couple of days - it's like his body is getting worse at getting rid of the sal - is this normal? Anything can be done?

thanks for listening - Alisa

Hi Alisa. Sydney's water is fluoridated at a level of 1 ppm, and skeletal fluorosis commonly affects the spine before other joints, so your husband should consider fluoride as a possible causal factor. I think Lindy said elsewhere that the glucosamine sulphate she takes is derived from some kind of sea shell, so it may contain a significant amount of fluoride. I'm not saying that taking it is necessarily a bad idea, it's just something to be aware of.

Thanks guys - will give it a go!
Alisa

Chenya - hello to a fellow Aussie? Isn't coconut oil high in salisylates?

hivingout - I can relate to the wishing "someone had given me a hint before I got the skin infection and got all these scars..."