Samter’s Triad/Salicylate Free diet

As some of you may know recently I have really been suffering with some problems with my ears, feel like I am going deaf! :(  Not been good.  I have been on for the last month, antibiotics to also deal with a sinus infection.  Both of these are connected, although I am near the end of the antibiotic course and I am still having issues with the ears.  I am seeing the Doctor again on Thursday about the ear issue.

Back to the point of this blog…sort of…I suffer from something called Samter’s Triad.  So I get nasal polyps which I have had surgery to remove more than once, most recently 2 years ago.  I suffer from Asthma, which if I am honest hasn’t been the best over the last 6 months either.  Usually it is fairly well controlled and I have no problems with it, not so recently, being a triad that means there are 3 things, and I have the third as well, however in someways it is the least bothersome of the 3.  I suffer from anaphylaxis shock if I have any NSAIDs, (non-steriodal anti inflammatories), these are things like nurofen etc.  The only time this proves a problem when I do something like break a limb etc as they are usually the best for joint pain etc.  Otherwise I don’t have a problem with this particular symptom.

About 12 years ago when I had my last surgery in New Zealand the surgeon actually mentioned the salicylate link.  Before then I had never heard of it at all.  We got a book that was about allergy free diets and I followed the Salicylate free side of it for about 6 weeks.  It was hard and restrictive but we did notice a difference.  No problems with my asthma at all, no issues with my sinues etc.  The most significant part that showed us that it was working was one day I had a crisp type snack which we thought was OK, and within minutes of eating it, I was sneezing and reacting in a severe way.  We reread the ingredients and realised that it wasn’t actually permitted.  We agreed that yes the diet worked, however it was very restrictive and too hard to do longterm.  So just went back to ‘treating’ the symptoms as per usual.

Then just before the last surgery a couple of years ago Samter’s Triad was finally mentioned.  I say finally mentioned as before I never knew what was wrong.  It is such a relief when you find out what is wrong, even if you find that there isn’t much you can do, just having a name can be a big help.  We started researching Samter’s back then, but there wasn’t really much information around and what was around got very complicated very quickly.  Think bio-chemistry type stuff.  Certainly beyond my knowledge.  The Husband even found it confusing.  So at that time we left it and just had the surgery and carried on as usual.

So are you all up-to-date yet. ;)  So a month ago when I started on these anti-biotics, talked about the Samter’s etc with him and I decided I needed to do something again.  So we did more research online again, and there seems to be more information about Samter’s itself and Salicylate free diets.  There seems to be more options open to me about what to do.  One of them is Aspirin Desensitation, which freaks me a little bit.  Also something to do with Leukotrines.  Both of these would still require a referral to an immunlogist, I think.  So when I see the Doctor on Thursday about the ears will be asking to a referral to the right person…if they know who it is.

Now both of these options are probably going to require me to do a Salicylate Free Diet, so we decided that after the holiday I would start on this again.  So it starts on Tuesday.  I will be eating things in the Neglible and Low columns, which gives you an idea of how restrictive this diet is.  Main fruit is bananas, and pears, peeled mind you.  Herbs and spices are pretty much all gone!  Tomatoes are all gone as well.  Will probably be having the same thing for breakfast and lunch, and just varying dinner for the most part. Since I am at work Monday to Friday this should be OK, just the weekends will be harder.  Will be pretty bland food wise as well…or very garlicky.  Hopefully this will help my symptoms fullstop, and then when/if the referral comes through for the right person, I should be ready to start whatever they decide is the right action for me.

This is why my curry tonight was my last curry for awhile.  Tomorrow my last supper is going to be Nachos.

Hopefully this will also have the bonus of doing something about my weight…lol

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About thekiwione

The lost kiwi, lost in the UK for 9 years now. Just doing my best living my life, pretty boring really, but trying to get more interesting and inspired...
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51 Responses to Samter’s Triad/Salicylate Free diet

  1. irene says:

    I too suffer form this disease, and was just poking around the internet for research. I know this was posted awhile back, but I HAVE done the aspirin desensitization, and have found TREMENDOUS relief….one problem. I suffered my first miscarriage, and can’t help but wonder if it is due to the aspirin I have been taking, along with the steroid treatments I do nasally. This does seem like it is a rare disease. It can be maintained, and I really do encourage the aspirin therapy. I am able to smell again for the first time in years after two nasal polyp removal surgeries, and have had not a single issue with my asthma. I get so frustrated feeling like a science experiment at times. I’m headed to my specialist next week. Good luck to you!

    • thekiwione says:

      Unfortunately my doctor here doesn’t actually believe in Samter’s, or any diet related issues with it. They also don’t do the Aspirin desensitisation here. So at the moment I am following the diet and that is working for me! :) Off medication for my asthma, sense of smell the lot. Will be seeing my specialist in a couple of months and he will be able to see if the polyps have shrunk as well.
      I am finding it frustrating at the moment that most of the research into food intolerances is in Australia and because I don’t live there I am swimming in the dark and fighting medical professionals who don’t believe in it!

      • Julia Barton says:

        After spending much of my thirties and forties with ongoing sinus and asthma issues and getting chest infections that would last two months despite taking numerous antibiotics I was at my wits end. After going to a new doctor and being referred to an ent specialist and having my second operation on my sinuses I was referred to an immunologist. I was diagnosed with samters triad. Finally an answer to all my problems. My immunologist has been great I have been on aspirin desensitisation which took me quite a few months to get up to the correct dose to be most effective. I feel wonderful, my asthma symptoms have disappeared, I can smell again for the first time in years. I would highly recommend this treatment.

      • thekiwione says:

        Thanks very much for that feedback, off tomorrow to hopefully start the treatment. :)

  2. Lizanne says:

    I have just had my third polypectomy and my Consultant informed me that i have Samters Triad. I have been suffering with asthma, allergic rhinitis and aspirin sensitivity for the last 10 yrs (i’m 39)…1 week in hospital 3 yrs ago due to anaphylaxis…but this is the first time he’s mentioned this condition.
    I’m about to start researching the salicytate diet but i have a feeling it includes a lot of the foods i enjoy :o(.
    My Consultant mentioned i may be a candidate for aspirin desensitization, which i’m a bit nervous about but think it could be wonderful. I am really tired of the polyps and feeling so bunged up all the time.

  3. Enca Hand says:

    Hi I have, today, received a letter from my Gp saying that I have been diagnosed wih Samters Triad. I had never heard of it before and am at a loss of what to do next.

    I have had two polypectomies in the past, but the nasal polyps grew back within eighteen months each time. Eighteen months ago, both my ears perforated and ended up taking 2 or 3 (can’t remember how many, just knew it took months) courses of prednisone and anti biotics before I was given antibiotic, steroidal ear drops after having my ears hoovered out (painful procedure). Also, started Flixanase nasal drops. All of which dealt with the problems and I regained my sense of smell back after 13 years! Bliss. However,this was short lived as, within six months nasal polyps became a problem again, asthma became difficult to control and I lost my sense of smell again!

    Now I find, that I am permanently congested, with a dripping nose. Sleep becomes difficult as I make “percolating” noises, according to my husband and I wake myself up. Night time mouth breathing also leaves me with a very dry mouth in the morning. I am constantly tired due to poor sleep patterns. I could go on! I just feel the symptoms are getting worse. Reading Samters triad, it does seem to make sense except for the fact that I don’t think I have much of a sensitivity to aspirin. My Gp suggested in his letter that I could try Montelukast talents but there may be a link to Chugg Strauss which scares me.

    I would appreciate any positive support out there. Thank you.

    • thekiwione says:

      Hi
      A low salicylate diet has really helped me. Unfortunately here in the UK not many doctors know much about the diet. Most of the research seems to be from Australia. There are 2 dietitians here in the UK who know about the elimination diet. One is in the IOW and the other in London. One in the IOW is private. The link to the the information is online http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/ There is another website http://fedup.com.au/ that has a forum etc. The owner of fedup is also the author of a book that deals with food intolerance. I recommend her book The Failsafe Diet and another bookhttp://www.amazon.co.uk/Friendly-Food-Essential-Allergies-Additives/dp/174045376X/ref=pd_sim_b_5 which follows the elimination diet as well. They are helpful if you want recipe ideas if you do follow the diet. The diet is hard, but you get used to it and learn your limits and then every now and again you can have something that isn’t allowed. The benefits are great though. I have a sense of smell now and had one for about 3 months now. I still take the flixonase spray, however the spray alone wasn’t giving me a sense of smell. My asthma is well controlled I use one puff of my preventer once a day at the moment and haven’t needed my reliever unless I have had a cold.
      Well done on getting a diagnosis though. My surgeon suggested that I had it but wouldn’t give me the official diagnosis, even though I fully fit the criteria. Any help advice whatever I will do my best.

      x

      • Enca Hand says:

        Than you for your response and I really appreciate your advice.. I will try the diet as it seems to be the most natural and positive way forward. Can I ask if you have excluded perfumed deodorant, cosmetics, skin creams, toothpaste etc. Don’t know quite how far to take this.

        x

    • Alice says:

      I’ve just been diagnosed with after years of misery. I lost my sense of smell and taste c. 15 years .Tell me how did you find out you had perforated eardrums and how did this happen. Is it related in any way to the diagnosis and or treatment. I’ve noticed when I do my nasal irrigation my right ear bubbles and pops and I feel the saline is being forced into my ear! It really hurts for a good time after. I get stabbing intermittent pain in that ear. Is this a complication of Sampters or is it possibly caused by some anatomical issue which manifests when doing the nasal flushing?

      • Enca says:

        Hey Alice
        Having had perforated ear drums three times, I notice the first sign to be ‘blocked ears’ and when i blow my nose, the ear pops and sometimes there is pain just as you describe. Then they fill with fluid. I guess this is because they are unable to drain away. It then feels like I am under water as my hearing gets distorted. I used to use cotton ear buds to clean my ears after a shower, and also when they ‘itched’ and I think this contributed to impacted wax which blocked the ear and I have stopped using them and I do believe that has helped.
        I am currently awaiting another hospital appointment for third time surgery and trying to deal with the symptoms although ears seem to be ok, just constantly blocked nose which runs especially when I lay flat in bed.
        I did try the diet for a very short while but found it so prohibitive that I returned to what I normally eat so song know if that would have helped. I am back on flixanase nasal drops to try and control the inflamed polyps. I’ve to tried the saline washes – I’ve had conflicting advice by doctors regarding this. One suggests I try it and the other looked at me in horror and forbade me to.
        Let me know how you get on. It is good to hear of other peoples experiences.
        Enca

      • Christine says:

        I wish I had an answer for you but I don’t. I have the same thing but not just when I irrigate. I feel like I am talking underwater all the time and my voice echoes in my head. The pain gets so bad sometimes that I have to lay down on the opposite side with an ice pack over my ear and do that for hours at a time. Then eventually after awhile it seems to loosen stuff in my head and the pressure is released. I think it all comes from the sinuses and when it is full and swollen it puts pressure on the ear drum. Even loud noises bother me a lot. I will keep on trying new things and I will keep you posted. Hang in there though. It’s got to get better, at least that’s what they keep telling me.

  4. thekiwione says:

    At this stage yes I have excluded everything perfumed etc. Boots have a pure range of shower gel that seems to be OK. I am using Baking Soda on my hair, which after the first month is fine. I used Baking Soda on my teeth and then ordered a toothpaste from Australia called Plain Toothpaste that has nothing in it. You can always start on just the food and if you don’t think the improvements are enough go further. Or go further to begin and then add stuff in and see what happens. x

  5. Patty H says:

    I have suffered with Samter’s since1984. I just returned home from the Middle East and moved to Arizona. I started sneezing when I got off the plane and had to take antihistamines daily along with decongestants.
    In December of that year my immune system gave out I guess because I was wheezing, short of breath and couldn’t figure out what was going on. It would be many years and several sinus surgeries plus a frontal sinus packing before the Samter’s Triad would be mentioned No way to control it I just avoided aspirin. The salicylate free diet back then wasn’t as good as it is now and yes it’s great to have a name for it finally. I am now prednisone dependent and hope if this diet helps perhaps I can at least decrease the dosage. I use Advair and Flonase to help also. I ordered a book called Clever Cooking with salicylate Intolerance , written from a lady in New Zealand. She literally started doing her own experimenting with foods and says she has very little trouble with her health now . I’m anxious for the book to arrive and get started. Here is a couple of links for those interested.

    http://www.livestrong.com/article/318943-elimination-diet-for-salicylates/

    For the cook book:
    Contact us at
    Linda Donald
    salicylate.org
    P.O. Box 37152,
    Parnell, Auckland,
    NEW ZEALAND
    Tel: +64212991894
    Email: ldonald@imagesandwords.co.nz
    website: http://www.imagesandwords.co.nz

  6. Jill Todd says:

    Hi, I’ve also had Samter’s triad for just short of 20 years. My 3rd, and most recent, operation, 8 years ago, worked pretty well as the surgeon opened up my nasal cavities. However, one side of my nose is now constantly blocking and it feels as though I have a packet of bluetac stuck to my face. At present I am taking oral steroids to try to bring them under control, and I go back to the consultant to discuss my options at the end of June! I would love to hear if your diet has helped, as I find the condition a pain! Thanks.

    • thekiwione says:

      The diet does help for sure. The major problem is lack of support in the UK from the medical profession. It isn’t something that shows up in a ‘test’ so they don’t believe it.

  7. thekiwione says:

    That I will be able to answer in a couple of months time. I saw my surgeon just before christmas and I am seeing him again at the end of July. Fingerscrossed it has. :)

    • Glad to hear the diet can work! I am on day 4 of the Failsafe diet, the strict version as described on the Food Intolerance Network website from Australia. I’ve avoided surgery so far mainly since I’ve spent the last five years either pregnant or breastfeeding between my two children, although I’m seeing an ENT again at the end of the week. I was diagnosed with Samter’s Triad about 8 years ago, and have had asthma (pretty easy to control if I take my flovent regularly) and pretty much no sense of smell for the last 4-5 years (it used to come back just during exercise before that), and now it will randomly come back but very rarely. I used to be completely blocked up in the nose all the time until I discovered oranges were a food that was making it super bad. Once I cut out oranges, I’ve been breathing a lot more clear but often one side will be completely blocked for awhile, and I blow my nose still several times a day – so this has made me a firm believer that it can be treated through diet! Anyway, I’m going all out with the diet and hoping to see some results. I just haven’t found any information on how long it could possibly take to see any improvement. Happy to have found this blog/thread :)

      • thekiwione says:

        The failsafe is brilliant, but hardwork. :) Good luck. You might start feeling worse before you feel better doing it though. I started feeling better at about week 3-4. Then you have all the trials to go through as well. Can feel very up and down.
        Really need to write some more about this don’t I? lol
        x

  8. Thanks for the heads up! From any other elimination diets I’m expecting the worse before better part. I’ve been strictly failsafe so far, as in avoiding all chemicals. But since samters triad/nasal polyps appears to be more linked to salicylates, have you played with or noticed a difference between going strictly failsafe versus simply low to no salicylates? If that makes sense?

    • I found going completely failsafe to begin with comes clear you out completely. I didn’t show up any other reactions to any other foods just the salicylates, so the maintenance diet is low to no salicylics. Unfortunately with the nature of salicylates that still knocks a lot of your cleaning, particular personal care ones, out the window. :(

  9. Lisa Rodriguez says:

    I just got this definded to me as Samters recently… I have always had reactions to things and have a long list of “true allergies”… I tired of being tired. If I eat 2 apples I have to go to the hospital the reation is so bad. If I take the steroids I gain weight. If I don’t take the steroids I can’t leave my house or eat anything really besides meat. Once dr told me the chest pain I had from the asthma was acid reflux. At the hospital when I go the just give me a steroid shot and send me away. I started singular and it seems to help with the breathing but I am misserable. I am affraid to ask for the aspirin treatment out of fear it will not work…. I am desperate to know of someone who had it like this and had wonderful results from the treatment…. I really want my life back. I have 3 young boys that need thier mommy again.

  10. Christine says:

    I was diagnosed with Samter’s Triad 3 years ago. I literally woke up one morning thinking I suddenly had seasonal allergies but it wasn’t that simple. I was lucky I guess, to have my condition diagnosed so soon compared to so many others who waited years to know what it was. I have had surgery to remove polyps and found then that all my sinus cavities were full and infected. It was not fun. That was last August and here I am now again feeling no different. After Ct scan, after Ct scan I still have severe pain in my ears and all throughout my head, especially in my right side. I think that happens because I favor my right side when I sleep and in the mornings (the worse for me) seems that because there is so much mucous and inflammation in my head that stuff just stays there and collects, which in turn causes pain, pressure and I can’t sometimes even walk or talk because of it. I tried de-sensitization but it didn’t work. I was feeling worse than before and I developed hives all over my body and severe ulcers. I had to stop I was suffering too much. My asthma is under control and of course I don’t go near any NSAID’s at all. I find though that no one really knows anything about this. I feel I have to look myself into finding a cure or something that could help me. I live in Ontario, Canada and I will soon be going to another specialist in Toronto that may help. My brother told me about the salicylates and the diets so here I am reading and debating what to do for myself. I feel really discouraged.

    • thekiwione says:

      I say give the diet ago. It is hard, can’t lie about that. However having your symptoms under control is worth it. You also start learning how far you can go in terms of relaxing as well. My last surgery was 4 years ago. This time last year it was looking like I was heading for another surgery but last check up by the surgeon in July, has discharged me for the meantime and no need for surgery at this stage. :)

    • Michael Scully says:

      Hello,

      I have had three ops (different ENT surgeons each time) to remove nasal polyps over the past twenty five years. I also know I’m allergic to salycilyc acid. In January of 2012 I was having difficulty breathing and following numerous visits to different General Practitioners, I went to see a Professor of Respiratory Medicine here in Dublin, who immediately diagnosed Samters Triad.
      The treatment prescribed was as follows:
      Four weeks of reducing quantities of steroids ( 5mg prednisolone beginning with 60 mg per day)
      Singular 10 mg ( one per day)
      Avamys Nasal Spray
      Sertide 500 Diskus (Asthma Preventer)
      Ventolin Inhaler (If required)
      A diet sheet listing foods to avoid which are high and medium in Salycilyc Acid.

      I returned for a follow up examination in April 2012 feeling much better. I have gradually
      reduced my medication and my symptons of 25 years have practically disappeared. I continue to
      use NeilMed Sinus Rinse every day. I am fairly sure if I had continued to attend the G.P my symptons would not have improved.
      Hope the foregoing may be of some value to those of you experiencing Samters Triad

      Michael

      • patricia says:

        Hi Michael
        Was wondering who was the respiratory specialist you went to see in Dublin. Have made some progress with this condition my self but only realising the salycilyc acid connection now
        patricia

  11. Christine says:

    I am going to a laser clinic in a couple of weeks. I don’t know anything about it but I am going to research it. They advertise big results in terms of helping sinusitis so I feel I have nothing to lose at this point. And I think I may also give the diet a try. I just have to psych myself up for it. Thanks

  12. Jennifer says:

    Random side effect of samters that my husband has found is an allergy to mint. I haven’t been able to find a toothpaste he can tolerate. It is both artificial and fresh mint. We only found out the other day from a nurse who looked it up and found mint has some similar properties as aspirin. I wonder what other foods there are? I think we may have to try a low salicylate diet…

    • thekiwione says:

      Yes Mint is high in salicylates. As are most herbs and spices. I have ordered toothpaste from here http://www.oralhygienesolutions.com/ it is Plain toothpaste, it has fluoride in but no flavouring at all. For a really clean feeling add some baking soda.

    • Mary says:

      I use Crest Cinnamon Rush toothpaste. I have never had a diagnosis, but after a friend said she had been dealing with similar symptoms as me, I started doing my own research into Samters Triad. I think this is me! The cinnamon toothpaste is the only one that I don’t immediately start wheezing with.

  13. Joolz says:

    Hi there ‘Triads’ Well, I’m a new comer to Samters Triad. I was diagnosed 6 months ago but was told by my ENT specialist that it’s an inflammation of the sinuses and there is no cure. I had my follow up appointment only yesterday and it was mentioned again. This time, I took it more seriously and started to wonder what it actually is and if there was a special diet I could follow to help ease my symptoms. I was not given advise on this problem so I felt I had to research myself. Thanks to the internet, I’m starting to learn and i’m shocked to find the trigger of my allergic reactions: runny nose, headaches, recurring polyps, asthma attacks oh and not to mention, my most annoying persistent cough! It’s been food all along! But, most devastatingly, my favourite foods and drinks `Spices and Wine!’ arrrghhhhhh Nooooo!!!!!!
    After reading everyones messages (hope you don’t mind) I have all these. Over 12 years I have suffered with Asthma, Polyps, sinusitis, Rhinitis, Allergies to Dust, Pollen but most of all Aspirin! I took a Neurofen about 6 years ago, a pain killer I normally take, but this was a day i’d like to forget because I had a severe reaction which led to swollen lips, my face turned bright red, my eyes quickly went blood shot and I couldn’t breath, a very scary time! I couldn’t understand why my body started to reject this pain killer? I’ve now been told I’m to have surgery yet again 4th time! News I dreaded!
    Recently, I have also noticed my skin has become more and more sensitive to things too? I break out in small red blotches all over my skin after a bath. Certain perfumes make me itch and small like blisters have appeared. I am now at the end of my tether! It is getting me down and depressed. I’m shattered because of lack of sleep and I feel all energy is zapped due to constant blowing of the nose, constant coughing and worst of all my wheezing which i’m finding hard to control.
    I just want ME back again. I want energy, I want to be able to go places without wheezing, I want to be able to smell the beautiful things life has to offer, I want to be able to live life and not struggle with a tissue always in my hand or annoying people around me with my cough. I also want to pursue my dream job and become an art teacher/lecturer but I feel all of this is stopping me.

    I’m sure you all understand where I’m coming from! It’s great to find people that can sympathise with this disgusting and annoying problem.

    • thekiwione says:

      The diet is hard, but when I find that if I do it for a couple of months and then stop for a bit, then restart when I start feeling my symptoms returning I go on the diet again. The salicylic acid builds up in your system. I need to go back on the diet at the moment, however I will shortly be seeing someone to hopefully try Aspirin desensitisation, to get onto this I had to go through immunology rather than ENT. Worth seeing if you can get a referral.

      • Joolz says:

        Hi there, Firstly thank you for replying to my rant message! I have felt on my own with this lingering problem, until today. Finally found people out there who can understand the hardships we deal with, that effects our everyday life. All i want out of life is to be able to breath and take in the fresh air, especially now Springtime is here. Also, to be able to make a conversation without breaking out into an annoying cough along with a persistent wheeze. It looks like i’m going to have to try out this salicylic diet, much to my despair. l know that doing this diet will benefit me, as I long to feel fit and energised again. I’m only 40 yet at the moment I feel 60 year olds are healthier and fitter than I am.
        I do get frustrated especially when people moan about a seasonal cough and cold? “HELLO, THATS WHAT WE DEAL WILL 24/7!”
        Anyway, as you can see I feel quite upset to read about this problem knowing I’m taking out my little luxuries in life ‘Food and wine’ being the main concern. Even through all these complaints there are three precious people i’m most grateful for and they are my beautiful healthy twin daughters and my caring and supportive husband who has listened to the most dreadful and disgusting noises that comes from me.
        Aspirin desensitisation? “Aspirin’ the name makes me cringe! What is involved?
        Well, here goes…. “Good bye tasty food, Hello Plain boring food!”

      • thekiwione says:

        If you get hold of some cook books there are some good recipes out there. Family favourite is sugar roasted potatoes…nom nom. Like Christine said you may notice that other things you react to as well. I find that if I have dry fruit I have to check out the preservative used, common one is sulphur based and that really upsets my tummy. Homemade bread is really good as well. You do get creative.
        I am not 100% sure what is involved at this stage, appointment is on the 5th of March, will no doubt do a big blog about it then.

    • Christine says:

      I really feel for you but I understand perfectly. I have been on the diet for 3 months now. It has made a difference for sure and “it” being hard is an understatement! I agree that it does build up in your system again if you have followed it precisely and then you cheat a little. I did not cheat at all for the first 2 months and just lately I might have had just a few pieces of green vegetables or a piece of chocolate and for sure it hits me mostly on the right side of my face and into my ear. A lot of face pressure and a terrible feeling all around. The one thing that I have also noticed with me was my sensitivity to any preservatives/chemicals in foods as well. I didn’t think that I had that but I really noticed it when I started this diet. I wasn’t cheated but still was getting a lot of exaggerated symptoms still so I immediately changed my diet again and it became even smaller because I had to find food that was not full of preservatives. That in itself is a hard thing to do. I have since been making my own bread and shopping at organic stores that have more natural ingredients and no preservatives. It’s hard and I hate it. I am being booked for another surgery but I am not sure if I want it. I am trying everything else to help me in the meantime. I am still hoping that I find myself a cure or an almost cure for this condition. I can’t wait and hope that someone else will. I will keep you posted.

      • Joolz says:

        Thank your for replying to my Rant Christine. I will try organic food to see if it also helps me. Good Luck to find a cure. If you do, then please share!! I know i’m going to have to be strong because I know it’s my health I need to think about.
        I’ll be back to let you know how I get on.
        Thank you for your advise!
        Joolz

  14. Joolz says:

    Hi there triads… Just thought I’d update you all on my first week of my new diet ‘the elimination of salicylate… What a transformation!!! After all my years of suffering, wheezing and runny nose thinking its dust or pollen. Not even a week and I noticed a difference immediately!!! AMAZING! I have been really strict with myself and really reeped the well deserved benefits. No wheezing , no stuffy nose, no headache, no sinus pressure, no coughing. I’m sure the wine will be calling and I may givin to the odd glass or two, however my life has changed dramatically ;) thanks for everyones advice !!
    From one happy joolz

  15. Madi Smith says:

    Hello fellow sinus sufferers. Thought I would tell you my experiences with Samter’s Triad and aspirin desensitization. A few years ago, I developed sinusitis and asthma symptoms. I also developed a sensitivity to aspirin, which I had no idea was related to the other two symptoms. After 3 sinus surgeries and more sinus polyps, I was referred to a physician who immediately diagnosed my condition as Samter’s Triad. I have since had a fourth surgery, then went through the aspirin desensitization last December–not a difficult experience. The results have been wonderful so far. I feel great and can breathe well. I do continue to use Dulera and Singular for the asthma and do not have any asthma symptoms. I take 4 aspirin daily at this time. The only negative effect I am recently experiencing is tinnitus. Perhaps, if I can reduce the daily intake of aspirin soon, this problem will be aleviated. We will see….

  16. F. Ellen says:

    It’s nice to see someone blogging about this finally. I figured out I had Sampter’s about 10 years ago now (Actually had the symptoms since 1992) and the ENT doctor I have now is the first one that actually ever acknowledged that I have it. (this year). I am allowing myself to suffer somewhat because the diet seems so strict that it looks like I would end up dying of heart disease or something like that if I followed it to the letter. So I eat fairly normal, but keep away from preservatives and boxed foods, having worked at home for the past eight years has probably helped. The biggest triggers are still tomatoes and my toothpaste, which is why I came upon this blog, looking for something I can brush my teeth with at night and not have to get up at three a.m. to empty my sinuses. If it weren’t for that I would sleep through the night since I do not try to eat anything past about 4:00PM. except maybe one or two things that are on the diet. Beconase AQ and Advair always helped the symptoms otherwise. It took me 10 years after they stopped selling Beconase (or Vancanase) in the US to find a Canadian source for the Beconase. Alas, my polyps have returned though, so will probably need another surgery before I can access the full effects. It kept them from returning for the six years I was able to purchase it after the first surgery.
    Well, good luck, all of you and thanks for the tips.

  17. Sandra says:

    Hi. Please tell me your status with the Samter’s Triad. Are you still on the Salicylate free or low diet? How are you feeling? I have not been diagnosed but have all 3 issues….for years! Trying the diet. I would love to know more about how everyone is doing.

  18. Kate says:

    Hi there,

    just read this when trauling through the next trying to find more information on Samters Triad. I was diagnosed this year after a multitude of asthma attacks, running nonse, no smell an generally feeling not me! I have had a polypectomy and sinus blow out surgery last week and am just recovering and following the salicylate free diet as best I can..even though I could murder a glass of wine most nights! I have not been told about the aspirin desensistisation and wondered how this works and what happens and who I speak to about this. It good to know ther are others out there anyway..

    kate

    • thekiwione says:

      Hi
      The process for desensitisation is actually quite easy really. I had mine done at the Sheffield Immunology Department, so an immunologist referral is your first port of call.
      Once I got the appointment the first appointment involved the usual skin test malarkey to check there wasn’t anything else. There wasn’t, which I knew there wouldn’t be.
      Next appointment involved getting liquid aspirin put down my nose. This was pretty unpleasant. This was happening over the course of a couple of hours, with careful monitoring including your nasal breath…think peak flow meter but for the nose. There had to be a reduction of your breath and an increase of your symptoms for you to be considered for the next stage. I had that so could do the next stage. The next stage was over a month at home. It involved putting aspirin down my nose each day increasing the dosage every couple of days. Then back to the clinic for the oral challenge. This involved giving you aspirin tablets over the course of a couple of hours again monitoring you. I was scared before all of this that I would have a full on fit while there, but didn’t either time. They are very good and watch you carefully.
      Now I have to take a low dosage each day, 150mg and also montlukast as well. My sense of smell will vary a bit but I think that is more normal variation rather than what I used to be like…today have it and everything smells so good!
      Good luck.

  19. Richelle says:

    Wow this blog is amazing, it’s very easy to believe that you are the only person who has to deal with this and it’s very easy to go slowly insane with it all. I am sick of being sick, too many surgeries with no results. This has been truly interesting reading, I will definitely look into the diet and talk to my ENT dr in regards to desensitisation , am so over being blocked up, nose and ears, constant headaches after all the blowing and then of course not being able to take anything stronger than panadol or else I’d have another fit, good luck everyone

  20. Iluvpete says:

    Hi everyone! Thanks for sharing your stories. My 13 year old son was recently diagnosed with the big S. Looks like a long road, but glad to hear some of the treatments offer relief. He has a good excuse to not eat his fruit and veggies now, at least. Most of the docs think he is too young for aspirin desens.. So just doing singular, dullera, nasonex for now. I just feel a bit helpless in trying to help him feel better.

  21. J. Stone says:

    Found out recently from a new (& very smart) ENT ( after a year of one sinus infection after the next) that I have Samter’s Triad; however, I don’t have the asthma, but it runs heavily in my family. Had a shock reaction to aspirin 18 years ago. Luckily, I had some liquid Benedryl in the house and drank some of that. Have dropped apples and other spices, etc. from my diet (found that out on my own) Have nasal polyps on one side, but seems useless to have them out. The only medication that helped me was Singulair. However, started having terrible mood swings and had to get off. Sad! That med gave me immediate relief. Sigh! I have just started allergy shots for my other allergens (grasses, molds) and hope that helps over the long haul. And now I carry an Epi-Pen. Any foods that I need to drop? I hadn’t thought about mints and toothpaste! Thanks for the heads up on that. Ate 4 mints yesterday and felt bad all day! (Forgot!) So nice to know that I’m not alone in my situation! Any suggestions appreciated!!!

    • thekiwione says:

      If you google salciylate free diets you will find most of the food you need to drop. Unfortunately most fruit and vegies are on the no go list. :( Which is another reason I am so glad I have now been desensitised and don’t have to worry about that. The diet is boring as all hell. Sue Dengate’s book is a fantastic book to get your hands on. The failsafe diet. Good luck.

    • madismith@aol.com says:

      Going through aspirin desensitization was the best solution for me. It took five days and was well worth it. I don’t have sinus infections now. I continue to take aspirin every day. I use Dulera once daily for the asthma. I am still sensitive to wine and beer, but not sure what causes it. I have pretty much lost my sense of smell, but I can get along just fine without it. Life is pretty good. M. Smith

    • michael scully says:

      Hi I am in my sixties and have had Samters symptons (Triad), I now realise, for thirty years. This was diagnosed about four years ago and I am on a generic version of Singulair called Montelukast which has no side effects for me. I also take a very effective inhaler named Flutiform and my asthma symptons have all but disappeared as verified by my lung function tests. Over the past thirty years I have had three nasal polyp removal procedures, the most recent being about six years ago. Following the last procedurethe the ENT surgeon recommended I use Neil Med nasal rinse every day and my polyps and polyp symptons have not returned. I am fairly fortunate as regards diet and the main type of food I avoid is anything spicy e.g. no curries.

      I understand that if nasal polyps are not removed they may have a tendency to increase in size and make breating through nose difficult. I had some heart problems in 2007,(coronary blockage) and they gave me tiny dose of aspirin. This caused me severe breathing difficulties and I now take a drug named Plavix as a “blood thinner”. Overall my health is excellent and I can exercise regularly without any difficulty notwithstanding my medical history.

      Michael

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