Sulfite Intolerance   

I suffer from a sulfite intolerance, and I just wanted to post this page to possibly help other people who are suffering like I did. The first thing to do if you are suffering is to talk to your doctor about taking Vitamin B Complex (see below).  It has changed my life.

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Vitamin B Complex has changed my life:
If you haven't tried this, it is a MUST!

The one thing that has had the MOST AMAZING EFFECT for me was taking Vitamin B Complex:   Read this.  I am wondering now if it might even cure me after 10 years of suffering (though mind you I never had a life-threatening reaction -- if you have -- talk to your doctor before you do anything)!  It's still too early to tell, but so far the results are amazing.

I started taking Vitamin B Complex early this year (February or March 2009) and now that it is October, my life has changed.   I haven't taken a Claritin in 2 months --the first time in 10 years!  I've started eating low to moderate sulfite foods that I normally would have reacted to, and so far to date, I am NOT REACTING ANYMORE! 

I drank an entire Sprite the other day, and ate a gooey chocolate/caramel/fudge dessert (loaded with sulfites) out at dinner and I had NO REACTION!  Yesterday, I ate clam chowder at a restaurant (plus bacon in a salad and I had another sprite, plus a foo-foo coffee drink at Starbucks), and felt a slight reaction 10 hours later so I took more liquid B and it ended it.  I am SO EXCITED!  I don't know how many sulfites I can eat, but each week, I am going slowly up it and see if I get a reaction.  It's been amazing for me!  I no longer get hives, or worse, other reactions.  It's mind boggling!  B-Complex seems to mediate my reactions.

Rick had highly recommended B12 for years, but I was afraid because my mom told me it was an oil-based vitamin, which can build up in the system, if not monitored.  I never checked to see if she was right sadly.  She wasn't.  What a mistake I made...

I am taking two forms of B Complex from Wal-Mart right now.  One is a liquid you put under the tongue (Spring Valley B-Complex Sublingual Liquid), and the other is Nature Made (B-Complex with Vitamin C or Super B Complex). It has been the single most effective thing I have done since finding out I was sulfite intolerant! 

Remember, I am NOT a medical expert, so please seek professional guidance before you do anything.
 

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MY OTHER INSIGHT (prior to B12):

The most important question I get asked is if I suspect I am reacting to sulfites, what is safe to eat?  There always seems to be a safe product out there, or an alternative if you educate yourself.  What  you need to do is to become familiar with the names of sulfite preservatives, as well as ingredients that are not labeled as sulfites, but do contain notable amounts of sulfites.  Once you do this, you will find navigating away from sulfites is relatively easy, as long as you are discipline.

Then you need to know all the foods that can contain these ingredients, or sulfites themselves.  If you do this, you will be educated and better prepared no matter where you go. 

 This list doesn't mean you can't eat any of these foods.  It means they may contain the ingredients from the above list, or sulfite preservatives directly.  If so, then you need to avoid the offending food product.  But like I said, there are usually plenty of alternative products out there, and even when there isn't an alternative product, there is usually a good substitute. 

I have found safe alternatives for almost every product. I just have to look around, and sometimes I have to shop at health food stores to find them.   Pancakes in a box don't work, but making some from scratch is just as easy, and completely safe if you find a good recipe that is baking powder free.

Read more about sulfites from the American Academy of Allergy, Asthma and Immunology.

My Story

My Symptoms

Products I use

Food Substitutes

Thanks to Rick

My Story 

Ever since I hit puberty, I suffered from a permanent "rash" that slowly developed on my back.  At night, I would scratched it so bad in my sleep that I would wake up with scabs, and blood all over.   I didn't own any pajamas without blood stains.  I was highly embarrassed about how I destroyed my back that wearing a bathing suit was difficult. Strangely, I did get relief from the rash in the summer sun, and I don't have any explanation for that.  [Now, I take Vitamin D3, and it seems to help me.]

My mom always told me I had a bad scratching habit.  Doctors always looked perplexed, and quickly diagnosed me visually with a "viral skin infection" which I must have been born with because my brother suffered the same thing [They were wrong, I just had hives that were scratch to death!] Again and again, I was told there was nothing they could do from me as the medical profession doesn't understand most viral infections, sorry.

As a teenager, I was also low on energy, and remember not being able to keep up with my mom raking leaves.  She never understood it.

I mentioned my rash to doctor after doctor as a teenager through adulthood, and no one knew how to help me.  Then about two years ago, I got extremely weak, gained weight, bloated, my heart started to pound, I got headaches which were getting more and more severe [migraine level], noticeable hives all over my body in patches 24/7, I was thinking morbid/paranoid thoughts constantly, and I became devoid of energy for months on end.  My periods also nearly stopped.  I knew something was wrong.

First, I went to my family practitioner who thought I was just over tired and overworked.  I tried to explain to her I was sleeping 12 and 14 hours a night, and that I was only working part-time.  She wrote me off as a typical overworked mother, even when I corrected her, and stated that I had no children. Then she blamed it on the fact I recently moved, and it must have been stressing me out.  I went home, and suffered for nearly another year.

Then it got so bad, I went back again.  On my insistence, she then sent me to a dermatologist.  I'll never forget that visit.  He looked at my back and said it had "lesions" all over it, and he had never seen anything quiet like it.  I told him I thought shampoo was my problem  (which was correct -- shampoos can have sodium sulfates - to which I am also sensitive too though not everyone is), and he said he had never heard of a shampoo allergy.  I asked what shampoo to use or where I could buy a clean product -- and he said he had no idea.  IGNORANT!  I even asked a local pharmacist to no avail.  Health food stores carry shampoos without Sodium Laurel Sulfate.

Next, I went to an Endocrinologist for help. During my visit to the Endo, my blood pressure was 122/90.  The bottom number "90" is the first stage of high blood pressure, but she wrote it off.  She did, however, run every test in the book, and while waiting for her results, I literally laid on the couch with the shakes every time I exerted energy.  Holding the phone was difficult.  When she called, and told me the results were perfectly healthy, I was even more desperate for answers.

After that, I went to two allergists.  The first one hinted that I might have a "sulfite intolerance" after testing me for 100 food items, and seeing my food reaction list.  She said there was nothing she could do for me so she gave me a medical journal printout and sent me on my way.  I cried in the car. 

The print out the doctor gave me said if you have problems with grapes and packaged strawberries, packaged potatoes, and a few other things, you probably suffer from a sulfite intolerance.  I wasn't eating these foods!!  I was reacting to salami, bacon, Tang, soda, ice tea, lemonade and vitamins.  I thought this woman was crazy!  Furthermore, she told me the prick test showed I was allergic to watermelon and pork which have never given me a problem to this day.  I eat those foods without worry!

Little did I know that reactions are not immediate, either. They can be delayed for hours, so I was missing, or miscalculating some of my reactions.  She also only gave me about 2% of the foods that contain sulfites. She essentially left me in the dark.  The packaged food industry is loaded with sulfites, and they don't have to tell you!  She didn't tell me near enough to even begin to help solve my problems.  I believe there is no money in it for the medical profession to learn about sulfite intolerances because people who suffer don't need treatment.  They just need to stop using the offending products once they know what they are!  

The next allergist said he thought I had "idiopathic hives".  Essentially, the medical profession use this term when they have no idea of the cause.  "They are simply idiopathic," he told me.  I didn't believe that for a minute.  I was ill and getting worse. I needed to find out why, and I needed to do it soon...  

Low and behold, however, at the same time I was going to the allergists, I had posted my food intolerances on a the alt.support.food-allergies newsgroup, and a gentlemen by the name of Rick Williams responded.  He has great information posted on his site www.learningtarget.com/nosulfites/index.htm He also suggested I had a sulfite intolerance, but Rick knew the ins-and-outs of suffering because he, too, was intolerant.  It was only through Rick's help that I began to learn about my true problem.

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My symptoms

Many people who suffer sulfite intolerance suffer from asthma.  I do not suffer from asthma, but I get:

  • headaches/migraines (at moderate exposure)
  • hives, hives, hives, and more hives (low level exposure)
  • nausea/gastritis (low level exposure)
  • flu-like symptoms (high exposure)
  • rapid heart-beat (moderate exposure)
  • lethargy (moderate exposure)
  • foggy brain/feeling of impending doom/depression (moderate exposure)
  • puffiness in faces and eyes (low to moderate exposure)
  • water retention/bloating (low exposure)
  • swollen tongue (low to moderate exposure)

I am also extremely externally sensitive.  I react to shampoos, laundry soaps and boosters, and bar soaps with huge hives sometimes on contact!  Some toothpastes and mouthwashes are also a problem as well as some lotions. I used the new Colgate mouthwash toothpaste not long ago, and got huge hives all over my mouth within 10 minutes -- the fastest reaction I had ever experienced! Then upon reading the ingredients, there is was -- sulfites!  

I believe if I had continued to eat high sulfite foods, and continued to lather sulfite shampoos, and soaps on my body, eventually I would have had a serious, potentially life-threatening reaction. I am certain of it.  Oh, funny enough, the allergist who correctly suggested sulfites prescribed me epinephrine.  When I read about it, I found that epinephrine contains sulfites!  Needless to say, I didn't fill that prescription.  Do know however, several people have informed me that Epi-pens save lives, even with sulfites, and they have recommended I carry one regardless.  I have yet to speak to a medical professional who is educated on sulfites to get a final opinion so you must make your own call.  I suppose carrying one as a last resort is not a bad idea. 

I can, however, eat small amounts of sulfites, and don't fear I will have anaphylaxis shock due to it.  For me, high doses over months may be life-threatening, but little bits here and there just make me feel bad. With that I am not paranoid if I go to a party that a small amount will be lethal.  I often just navigate by experience and hope for the best.   

I did learn a few years ago that I suffer from Dermatographia.  That may explain why I hive so bad.

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Products I use:

Since I have realized this, I have found some wonderful sulfite-free products.  Food wise, Rick has been a savior for me, truly.  Visit Rick's site for food information http://members.aol.com/nosulfites/   Externally, here are some other great products that I have found to be equally as important for me:  

(Note:  Since I started taking Vitamin B Complex, I can use any shampoo now without a reaction!)

  1. www.aubrey-organics.com  for sulfite/sulfate free shampoos, soaps and conditioners.  Some people don't react to regular shampoos -- so if you don't -- don't worry about it.  But if you do, and you want to buy it, you can search where you can buy these locally on their website.  Great products!

    While this product line was an incredible improvement over traditional soaps and shampoos, I still hived in the winter months really bad, and I didn't understand why.

    Then by accident six weeks ago, I tried the following product which has CHANGED MY LIFE. 
     
  2. Giovanni's 50/50 Balanced Shampoo

    Since I started using this shampoo as my shampoo and soap, I no longer hive in the shower, or when I go to bed at night during the winter months which has always caused me a great amount of suffering.

    I suspect these hives were due to my dermatographia (extremely sensitive skin).  But if you suffer like I do, this may be helpful for you, too.  Though I think Aubrey Organics may be fine for most.

    You can buy this product online, at Whole Foods, or likely at your local health food store. They tell me it is not as "clean" chemical-wise at Aubrey Organics, but it has changed my life for the positive.  They also sell this in gallon bottles, if you ask for it!
     
  3. All Free and Clear  (laundry detergent) -- Fabulous product at most grocery stores in the U.S. as it only contains trace amounts of sulfites which are not enough for me to react to.  My husband kept telling me when we got married, "Every time you go to bed, you get hives.  You're reacting to something!"   I am not sure if this is due to my sulfites, or due to my dermatographia (sensitive skin condition).  This is the only product I can handle.  Cheer Free and Clear is full of sulfites.
     
  4. www.wholefoods.com  If you suffer from a sulfite intolerance like I do, this grocery store is an oasis in the desert.  You can find many products at their food markets which are made from real sugar instead of corn syrup.  I buy my sodas here. I buy "365 Cola" which is a true dark soda devoid of any caramel color and corn syrup!  I also buy cookies here (made without corn syrup or solids), salad dressings (without lemon juice concentrate), and Dijon mustard without wine!  Imagine that?  i also take Whole Foods 365 Adult Daily Vitamin, and I have not had any problems

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Food Substitutes that work for me!  Maybe they'll help you, too.

* For each of these, substitutes are 1:1.

  1. For wine, I now use Japanese sake.  Sake, if truly made the traditional way, should not contain any sulfites.  I purchase mine at a Japanese grocery store, but I'll bet most Asian grocery stores will carry it.

    A place called Mitsuwa in the Chicago suburbs carries nearly a hundred or more varieties of sake.  I buy a sweet dessert sake for sipping, I buy a dry sake for cooking, etc.  It's great, and I thought I didn't like sake.  It's all a matter of finding the variety (like in grapes) that you like!
     
  2. For balsamic vinegar, I use Chinese black vinegar --which is slightly sweet -- and made from fermented rice. 
     
  3. For corn starch, I use arrow root powder.  It's a perfect substitute, and even better than corn starch.  It doesn't cloud up foods when used as a thickening agent!  The taste is the same.  I've also bought organic corn starch and not had issues.
     
  4. For chocolate, I substitute carob.  Carob is just more caramel-honey-like in flavor,  but it is sulfite free. I have to admit, I love chocolate, and do break down because I am not allergic to it, but rather sulfite intolerance, and I eat some.  But I pay for it!  Temptation is hard!
     
  5. Instead of red wine vinegar, I use brown rice vinegar, or white rice vinegar.  The flavor is slightly sweet and mild. It's heavenly!  You can find these at most stores today, but if not, find an Asian market.
     
  6. For gelatin, I use Agar Agar (or Kanton), a Japanese seaweed product. Pick any fruit juice you like and mix it agar -- follow the package directions -- and whalla, you will have vegan, and sulfite-free jello!
     
  7. Hormel has come up with natural deli meats so now I can make a sandwich.  The meats are sliced, and hung in packages near the hot dogs, and cold cuts in the deli case, not at the deli!  So far, the ones I've seen are all safe!  Check them out.  Even Walmart carries this product.  They also make an uncured bacon that is fabulous, though I haven't been able to find it lately.

I also make my own homemade liquors -- such as amaretto, Kahula, Bailey's Irish Cream. There are great recipes on the web -- if you feel you are missing out!  Hiram Walker has informed me that they only use sugar and no corn syrup in their liquors -- so if they are caramel color free -- they are safe!  I haven't reacted to Cointreau so I drink that when I am out, and though I am afraid to drink a whole Guinness beer, I haven't reacted to it when I drank it in the past in moderation (a few sips to 1/2 cup).  Other people have written me and told me they have been able to drink Guinness as well.  I still scared, but willing to consider it again!

If you know of a good sulfite food substitute, contact me below and I'll list it here!

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Thanks to Rick!

And, much thanks to Rick Williams for his great website of information and continuing help to keep me sulfite free!  Please visit Rick's website for detailed information about sulfite intolerance, and the foods that contain sulfites!  www.learningtarget.com/nosulfites/index.htm   Rick sells a book and other things to help you. 

Thanks Rick for all of your help!!

I hope this helps you!
R (click to contact)
 


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