13
Oct
10

Sulfitenots: Share Your Story!


 

 

Kumbaya, sulfitenots, kumbaya.

 

We have had a lot of new people pop in at the blog and I would love to hear about everyone’s stories.

Please share your diagnosis story, your symptoms, how you are coping, general rants and bitches are encouraged.

My quick version is that have noticed intolerances about 5 years ago with red wine, chocolate and caffeine.  (I know.  Most people’s staples of life).  I would get irregular or rapid heartbeats.  So I eliminated and was better.

Over the past 5 years I have had a range of symptoms, weakness, fatique, fogginess, reynauds syndrome, headaches, bum immune system, etc. Over the past year, I have slowly had joint swelling that has incresed severely and that is when I decided to move drs and get some real help. I found the wonderful, amazing Dr. Mike and he diagnosed me but the allergy is so rare.  Still looking for help in dealing with it.  There is no pill to take that I have found and no real clear cut help.  So, here we are.  I want to have you all over for wine and cheese but DOH I can’t so let’s share here 🙂

 

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22 Responses to “Sulfitenots: Share Your Story!”


  1. 1 Terri Chandler
    October 13, 2010 at 10:39 pm

    Ok so, my name is Terri and 4 months ago I found out I also had this crazy allergy/intolerance. Everytime I drank wine my feet would swell and blister, my hands would swell and turn red and so would my face. My husband was convinced I was allergic to a preservative in the wine. We went to a bbq and I had a glass of sangria, shrimp, crawdads,garlic bread, strawberry shortcake and chicken with mccormick chicken spice. I threw up for over 12 hours. I could not breath (I do have asthma) my body was all swelled up, I wanted to die.. I finally went on the internet and wine allergies and found sulfites. I called my allergist and he suggested I do a 30 day food diary and come see him.
    I did not eat alot I was afraid to put anything in my mouth. I wrote down everything and the only thing he noticed on my list and could not really come up to an answer with was I have a huge intolerance for anything with sugar. I break out in hives and blister and get a screaming headache. He did tell me like so many other doctors that there is nothing to take or anything other than elimination to make it better. However, he offered the advice that sometimes when we have something traumatic in our life, like throwing up, that we can develop an intolerance and within a few months to slowly try something that bothers me and see if it goes away as quickly as it came on. The only positive thing he said is that my asthma pretty much went away when I found out I needed to stay away from all this food.
    My Asthma has been great almost off my meds completely. I took a nutrition class and it said that sugar comes from pure cane and also from sugar beets. I read somewhere that beets are a no no for someone with a sulfite intolerance, so I guess that would explain why I cannot have sugar.
    It is easier to put down the things that are tolerant than what I can’t have.
    Fresh fruits except, grapes duh! and citrus bothers me too
    fresh Veggies except for beets, and mushrooms
    Fresh Meat, cleaned well especially if it is on a meat pad
    Real Dairy, what do I mean by that? NO SUGAR, so I drink Raw Milk, daisy real sour cream, real butter, plain yogurt.
    I use sea salt and real pepper, fresh herbs, and natural seasonings. I can have some pasta, but no sauces, gravies, creams etc.
    Arrowroot works great and making my own broth has also been a life saver.
    I can take no tylenol, ibuprofen, and I am looking for a vitamin that is safe.
    My asthma medicine is safe so far.
    ON THE BRIGHT SIDE:
    Asthma better
    lost 38 lbs and 17 inches in 4 months
    Feel incredible
    no headaches,
    blistered feet, or red hands and face.

    It’s amazing that no one knows anything about this but I am grateful that Heather has this blog it has been a lot of help. OH I can have coffee, and splenda, but other that that and raw milk it’s tap water only.. Did you know that Miller High life beer is all natural and have not seemed to have any reaction to that as of yet! Have a great day. Good Luck all.

    • 2 Jude
      October 14, 2010 at 2:41 am

      I have had an allergy to sulfites for many years and used to be able to manage it quite easly by just staying away from wine, grapes, wine coolers. However, as I have finished up peri-menapause and entered into the early stages o menopause, it seems I have become much more sensitive to things. And oddly it seems that what bothers me one day may not a week later. This is really difficult to figure out. I do have mild asthma and I think that makes it worse. I have gone through the elimination process and have simply come to the conclusion that the safest food I can eat is food I prepare. I am a bit of foodie so while I can’t eat things like I once did, I can cook and find that by eating “clean” and “simple” I have had success.

      So while there are many things I don’t eat anymore. I am blessed because I can still eat pasta with a ground turkey and a great Marinara Sauce call Rao’s. It is expensive but works for me when I am in a hurry. I am lucky that I can eat some onion and garlic without too much of a problem. Dough Conditioners are a real problem for me though.

      I think what is frustrating is the misinformation that people who although they may be trying to help — put out on the web. I am grateful for this site because it is more about sharing that trying to be an expert or advisor.

      I will tell you that I have managed to figure out a pretty healthy diet that is delicious and satisfying –

      Lots of chicken (good quality – no tyson, etc.)
      Lots of veggies and fruits – no grapes
      Lots of salad (with chicken) – this is my go too meal when I am rushed
      Homemade turkey burgers
      For fun — John Morell brand makes an all natural beef hotdog, all natural, no nitrates (use celery juice instead). It does have a bit of cane juice, but I seem to be able to eat these with no problems.
      I have also started ordering pizza crusts and breads from Berlin Bakery in Berlin Ohio. They make small batches of breads that really only contain spelt flour, seat salt, yeast, water and canola oil. There breads and hotdog buns are great.

      Thanks to everyone for your posts and here’s to good eating!

      • October 14, 2010 at 3:07 am

        Don’t you hate when you type a novel that takes you about 10 hours and then you close the window by accident and lose everything. AAAGGGHHHHHHH

        Hi Jude! You are a foodie! The polar opposite of me! Therefore, I worship your culinary gumption and hope I can learn a few things from you.
        I am so glad that you found this crazy place…You have some awesome suggestions…I wanted to post some links for people, so I will type everything again….I am so sorry BTW that you are having more issues with your sensitivity. I can totally buy into fact that as your body is changing again, your sensitivity is getting stronger.

        The John Morell brand of hot dogs looks yummo. I have been too scared to try even the organize brands of dogs and brats at Whole Foods but these look so good and I am craving a home run hot dog…GO CUBBIES! (Lord, I forgot how much they suck. Oh well, Next year is the year.)

        I have to also include a link for the Berlin Bakery you suggested…I am gnawing on my paw right now looking at all the stuff on there.
        Admission: Never heard of Spelt Flour. Thought you spelt it wrong. BOO, HEATHER, BOO!
        But seriously, I googled it and here is the Wiki definition:
        Spelt

        You are so right about things effecting some people and not effecting others. There is definitely no one truth to this. It is all very gray…but I am so glad that you found this crazy place here and I am all warm and fuzzy about how we can all help each other.

        If you happen to live in Canada, some of us may be running away there soon, so be on the lookout for a clump of stressed out people with loose-fitting jeans and carrying grocery sacks full of organics.
        XO

  2. October 14, 2010 at 2:22 am

    Terri. You had me at blisters. OH NO. You poor thing! It sounds like your husband is helping you with this. Thor tries too but is a bit overwhelmed. He does at least understand how severe it is. We are jsut so busy with the kids and him working so hard that it is hard for him to find the time to even read this blog haha

    I think I love your bright side list though…and I do have asthma. And mine has been AWESOME.
    I still take three meds for it but I NEVER need my inhaler. Girl, congrats on the weight loss, that is the perk/silver lining to this dreadful situation. I have lost 18 pounds but that is like spitting in the ocean for me. I could lose another 25. It is coming off low and slow, so I am happy about that little side effect.

    Terri, do you feel like your allergist helps you or it came to a stop when he just proved the allergy? See, I think there is really nothing that they can even do. Have you tried taking benadryl? Does that help? I want to try too, but I have a sensitivity to antihistamines so I am not anxious to try.

    The sugar issue makes total sense. You have to stay away from beet sugar.

    When I say real dairy, I mean everything whole and organic….no lowfat…I like the greek yogurt but I have to sweeten it with honey, fruit or agave nectar.
    Hello, I don’t even know what arrowroot is…must google…I do make my own broth but it’s a PITA for me with three little kids…I do usually make a batch and freeze once a week. Especially now that we are coming into soup season. I seem to do ok with Advil and Tylenol. They take my swelling down a little when I have a reaction.

    I am so sick of water. LOL I can drink fresh OJ and have a juicer and sometimes I drag it out….I do love a grande decaf iced americano with cream and raw sugar. It is literally my special treat and seems to do me no harm, so I completely heart it.

    Must muster the courage to try the miller beer, but I do perfectly well with Sierra Nevada. I am just so sick of it that I could gag LOL
    Welcome, dear Terri and thanks for sharing…you are in the right place 🙂

  3. 5 Tracy
    October 14, 2010 at 5:12 pm

    I am going to write my story later, but I must jump in. German beer. All real german beer follows the German Beer Purity Law of 1516. 4 ingredients – no sulfites! That being said – the fermentation process produces some sulfites. So ALL beer and wine is gonna have it – not much, but it is in there. Sorry, ladies. I do hear absolute does not have sulfites and I buy an organic tequila that is heavenly. Be super careful on whiskey (and whisky). Many of them have caramel coloring. Glenrothes is ok, as is Highland Park.

    And why am I not losing weight?

    • 6 Joanne
      December 5, 2010 at 12:11 am

      I’m also jumping in about German beer. I have an email into Anheuser Busch as to whether or not ALL Beck’s beer is brewed in Germany. I tried the light and still had a reaction. Also be careful if you use eye drops. Most contain sulfites. The eye drop companies say that most drops stay in your eyes but the eyes are also a direct route to your stomach.

  4. 7 Jude
    October 14, 2010 at 7:02 pm

    Interestingly enough, back in early August, we took a trip up through Oregon, Washington and then ferried to Vancouver Island and then on to Vancouver. Traveling is my biggest challenge, but what I love most to do so it takes a lot of planning and a patient husband — we will call him Jock! He is great but I know gets frustrated with me. Sometimes I think I have become completely OCD about all this but so be it.

    Anyway, back to the trip. We always find a “Whole Paycheck and Advance on Next Paycheck or it” wherever we go and I buy things I can eat at the hot bar and we eat in — this all worked find in Portland I even ate at a restaurant and all went well. In Victoria things became a bit more challenging. We stayed at the Marriott downtown Victoria and when I called for room service and the person asked about food allergies I said “sulfites” and she said well the chef won’t serve you bread because we don’t make it so we can’t guarantee it. (I had ordered a sandwich… instead they special made me a chicken sandwich with fresh hand cut fries. They were awesome. As we were there during blueberry season I was so excited that I ate 4, yes I said it, 4 bowls of the most delicious blueberries ever topped with a touch of yogurt. Point of the story — once I crossed into Canada – except for these two meals I thought I would starve to death before I got back home. It was a bit miserable – I drank a lot of coffee and ate Wendy’s french fries which seem to be safe. We stopped for a quick bite at a place called The White Spot and I asked to see the ingredient book — impressed that they had one and vitually everything on the menu contained sulfites. We said thanks but no thanks and went on.

    So these are reasons that I cook 6 to seven days a week and always make extra at dinner so that it is available for lunch or dinner the next day. So all you Canada folks come on down for a visit and I’ll be happy to welcome you into my kitchen.

    Jude

  5. 8 Gigi
    November 8, 2010 at 3:35 am

    Hi Heather,

    Sounds like you have the same oral allergy syndrome that I have. I am extremely allergic to tree pollen so anything that grows on a tree is on the list. Apples, peaches, plums etc. (not citrus or bananas), fresh hazelnuts and walnuts. If you process these foods by cooking then the allergen is removed and there is no reaction. If you wear contacts DO NOT handle fruit (even if you wash your hands) then remove your contacts. This will result in blisters on your eyeballs! If you can imagine such a horrid thing! I did not develop oral allergies until I was in my early 30’s; my mother had the same symptoms. I have found that since my diet has become sulphite free I can tolerate fresh fruit with very minor side effects. Sounds like we share similar auto-immune systems… Also allergic to cat scan dyes (sulphites?) and a multitude of environmental things. Like Erkle once said “I love nature but I think it is trying to kill me!”

  6. 9 Gigi
    November 8, 2010 at 3:39 am

    Hi Everyone,

    Heather, it sounds like you have the same oral allergy syndrome that I have. I am extremely allergic to tree pollen so anything that grows on a tree is on the list. Apples, peaches, plums etc. (not citrus or bananas), fresh hazelnuts and walnuts. If you process these foods by cooking then the allergen is removed and there is no reaction. If you wear contacts DO NOT handle fruit (even if you wash your hands)then remove your contacts. This will result in extreme pain and blisters on your eyeballs! If you can imagine such a horrid thing! I did not develop oral allergies until I was in my early 30’s; my mother had the same symptoms. I have found that since my diet has become sulphite free I can tolerate fresh fruit with very minor side effects. Sounds like we share similar auto-immune systems… Also allergic to cat scan dyes (sulphites?) and a multitude of environmental things. Like Erkle once said “I love nature but I think it is trying to kill me!”

    • November 8, 2010 at 3:49 am

      Gigi, my new allergy-ridden bestie!

      A.)I love anyone who quotes Erkle.

      B.)Yeah, um hmmm, yup, I TOTALLY have that allergy. But when I tried to talk to an old doctor about it, he gave me a look and said, well then, don’t eat them. Asshat.

      C.) I wonder where you are from because you spell it suphites and I spell it sulfites. (TOM-AY-TOE…TOM-AH-TOE) Are you British? Has the Erkle sensation crossed the pond?

      D.)I do not wear contacts, but the idea of blisters on an eyeball made me throw up a little in my mouth.

      I have tons of environmental allergies, most of which has been staved off by Nasonex. That is a drug that has changed my life and I would marry it if I could. I guess I will just have to settle for shoving it up my nose.

  7. 12 Diane
    November 16, 2010 at 3:02 am

    I have recently found out that I am allergic to sulfites. I figured out years ago that I was allergic to eggs. I mostly stayed away from them but not enough. It took eating two pieces of dried apricots that almost killed me to find out about the sulfites. Now I carry an epipen and am very diligent about my food intake.
    I have found many restaurants have sulfites listed in a book for their customers. The Melting Pot fondue restaurant is an example. This has shown me that this is a more prevalent allergy than I ever realized.
    The list of sulfite foods is quite long and takes some trial and error to make sure that I am eating as sulfite free as possible. The other day we used an organic vegetable broth with our dinner. I had a horrible reaction and then realized it had molasses.
    At first I felt quite sorry for myself and still do at times. BUT as time goes by, I am feeling so much better. More like my old self. I rarely get headaches, am rarely sick now, my immune system is better, my brain and body no longer feel like they are in a fog. It is not worth the immediate taste of a sulfite food or drink to feel so lousy later. My life is slowly getting great again.

    • November 16, 2010 at 3:19 pm

      Diane, how scary about your reaction to the apricots. I am so glad to hear that you are finally starting to deal with everything better. I haven’t attempted to use an organic broth because they all seem to have onion in them. I don’t know if it would bother me or not. I am pretty much scared to try anything at this point. I was at Buffalo Wild Wings the other day and they had a sulfite free list and that was great. I actually had some plain wings and was totally fine! It was heaven! I will check out the Melting Pot…always looking for places to be able to eat out…thanks again for checking in and please subscribe so you can get the updates!

  8. 14 Sheila
    December 1, 2010 at 7:02 pm

    Glad I found your site. I’m 52 and have been fighting sulfites since I was 10. I have severe reactions and like everyone else was told there was nothing the medical establishment could do for me. I’ve lost jobs due to attendance issues and am currently unemployed. The worst issue I’ve had in offices is diesel generators in unvented buildings (Homeland Security installed and tested weekly), restaurants in office buildings, and cleaning chemicals.

    While I avoid sulfites and read labels, I’ve found the old reliable organics failing me as more mega-food corps buy out those brands. I’ll have to find the link to a chart which details them.

    Since this is an amino acid deficiency, I started taking molybedum, as well as B-12, Benedryl dye free and Zantac as H1 and H2 inhibitors. For the most part, these allow me to function. But, since sulfites are cumulative in the system, sometimes I don’t know what hit me,

    Recently I had an issue in a falafel carry out that serves them and fries. I didn’t eat, but the period I was there with my brother rendered me ill for three days. I’d been there before, but hadn’t noticed the front door wasn’t opened due to cold. I can avoid eating sulfites, but not the sulfur dioxide off-gassing.

    It’s getting increasingly difficult to live. My brother asks why I don’t just file for disability. I wonder if anyone has successfully received SSI benefits for this?

    I’m reaching a point where I’m afraid to leave the house.

    • December 2, 2010 at 3:09 am

      Boy, Sheila. That is tough…I mean it. I feel so bad for you. I can’t imagine having to deal with that intensity and for so long of a time. But I do understand what it is like to not be able to communicate what you are going through in a satisfying manner.
      It’s like me telling people that I have RA and then they say, yeah, I have a little arthritis in my elbow and it sucks. *Sigh* I try not to share anything with anyone anymore, sulfite allergy, RA or whatever. If it comes up, it comes up, but I am already sick of trying to explain things.
      I think it’s important that you have places where you can go vent, share or just complain that you had a really crappy day. I can’t imagine the feeling of not feeling like you can’t leave the house. I think there has to be some happy medium for everyone who suffers from things like this where you just have to accept that things are what they are and it’s better to be walking around alive than anything else.
      I hope that you can pop in and meet some people…to just be able to commiserate and visit somewhere that people can relate. I am in the middle of trying to get this RA thing under some control and so I am really not on here as much as I would like. Check out some of the links on my links page and there is a really awesome forum of people that have the allergy and there are some fairly severe cases like yours. You may get some more insight and definitely won’t feel so alone in all of this….
      Chin up!!!

    • 16 ElfGoddessSabine
      March 31, 2011 at 4:31 am

      Dear Sheila, your situation sounds very difficult, as a Social Worker, I would say definately try to access disability support. In Australia it provides a bit more money because of your disability and then its easier to access other help such a home and community care. If it feels really challenging to advocate on your own behalf ask for the unemployment social worker or another social worker to act on your behalf. Good luck and take care.

  9. 17 Brian
    December 5, 2010 at 5:07 am

    Wow the internet can really bring us all together when we suffer from the same problems. Now as for the poster who is buying the epipen, the solution in does not last long. So the makers of it have added a bit of sulphite to make it last longer. I would say that I have been a suffer for over 20 years. In that time I have been to the hospital at least 5 times with an anaphalatic reaction. The first time I had well over 75% of my body covered with welts and sores. The second time exactly two weeks later I was also put on oxygen as I could not breathe well. This was happening after we found out that I was allergic/sensitive to something. There was no internet then and no government forced labeling on products. Note I did not say enforced as the government cares more about business health than that of it’s people. So I was eating chips by the bowlful and the company decided to finally label their bags. It was about 5-10 yrs my next emergency. I had gone to an allergist (the dr. who helped health canada get their heads out of their a**es) and he said I may have a trace problem. Over the past 15 years I have reacted in various and sundry ways. And have come to the conclusion that Reactin, Claritin and Atarax are the only way to deal with this affliction. Being a large fellow I have taken up to 40mg of Reactin, 20mg of Claritin and 50mg instead of going to hospital for no help. This site has been a great find, and wish all of you well and good health. A place that I have found very helpful is the yahoo group called sulphitenomore. Lots of good knowledge there.

    Brian
    PS I have read messages from people where they have said things like. A husband was visiting a food factory, and he asked about sulphites. The response was oh the product has it but we have 3yrs of packaging to use before we put the labels on it.

  10. 18 Dana
    December 11, 2010 at 12:37 am

    I’m so glad I found this blog. I’ve been feeling very confused and alone. Two weeks ago after being exposed to a sulfur lime solution I became sensitized to sulfites. Before then I had only been allergic to PCN and sulfur drugs. Now I am reacting to everything I eat. I have found I can only eat whole organic milk, chicken, some fruits and veges, quaker oatmeal, aquafina water. Can someone give me a list of foods I should be able to eat? I am also reacting to make-up and skincare things I was able to use before. Please Help!!!!!!!!!!!!

    Also can anyone recommend a good doctor who knows about this?

    • December 11, 2010 at 2:46 pm

      Dana, so sorry to hear about what a hard time you are having!
      I think you should join the yahoo group sulfitesnomore …are a lot of helpful people on there. I am surprised you can drink aquafina…they add sulfites to it, i think, dont they? You can visit my list HERE but PLEASE keep in mind that everyone is different. I have also noticed that it has gotten a little more severe for me with time. I am also suffering from another condition and the meds for that seem to help my reactions a bit. I would start of trying to get food allergy tested but know that most drs out there do not really know much about this allergy and it is really frustrating. I want you to know that I completely understand your feelings of confusion and isolation. Most people don’t get it. I am so glad you have stumbled up us here…please come pop in whenever you need help.
      Where do you live and what are your reaction symptoms? How fast to they occur after exposure?

  11. 20 ElfGoddessSabine
    March 31, 2011 at 4:24 am

    Hi I’m from Australia, I am very lucky to live on a fairly organic farm where we have some milk and or own beef/lamb – soon hopefully chickens too. I’m 40 and have always lived healthily but have had a lot of stress over the last ten years building several houses, bringing up kids and working as a social worker – I wonder if this pushed my system and resulted in sulphur allergies starting three years ago. My symptoms are eyes swelling till they’re shut (Instant wrinkle former!)/ lips and recently hand webbing/tongueswelling/very high heart rate/losing consciousness.
    I haven’t figured out what medicines might be helpful – have some prednisolone and an epipen – all foods and medicines feel like potential poisons at the moment. I need to figure out what I can eat.. I feel pretty overwhelmed right now and feel that the choices are either keeping up my busy lifestyle or looking after my health. Pretty difficult with our modern expectations – maybe travel may be off the financial cards – a bummer when you live in a very isolated part of the world, at least Margaret River is very beautiful. I feel that living in a clean environment is of great benefit.
    Am glad too that I have always loved cooking… Feel like I need a can do list of foods to cook and eat… maybe a combination of raw and cooked/soups but every time I read something there’s something else that people react to.. I’m sad to see beetroots on peoples lists… as I don’t react straight away it’s hard to tell whats going on.
    I feel like this is a real challenge – somebody mentioned the feeling of not leaving the house… I find this feeling really hard as I’ve already had ten years of necessary social isolation bringing up kids without a telly and getting a roof over our heads. I think that financial access is a real issue and I would definately be pushing for access to disability support and home and community care help in Australia if I ever needed too. Would like to have time for meditation, yoga and exercise feel like this would help but its been weeks of sickness.. it feels like if I push my system too far it reacts… Damn and grief I love our home grown garlic! Wishes of strength and blessings of love, Sabine.

  12. July 27, 2013 at 7:08 am

    Hi, would you mind sharing which blog platform you’re using? I’m planning to start my
    own blog soon but I’m having a difficult time deciding between BlogEngine/Wordpress/B2evolution and Drupal. The reason I ask is because your design and style seems different then most blogs and I’m looking
    for something completely unique….. Apologies for getting a
    bit, off the mark but I had to ask! Thank you, so much!


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Heather Moran

Crazed sulfite-free woman.

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