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Happy Sulfite Intolerance

I started to develop chest tightness and wheezing out of the blue in the middle of running with one of my neighbors last spring. I figured that I was out of shape from my pregnancy and the strange sensation slowly resolved as I walked. But then it came back again and again, each time a little bit worse, and sometimes with chest pain. I had a chest CT to evaluate for a pulmonary embolism, since I was at risk due to being postpartum, and it was normal. My chest x-ray was normal too. My heart tests, including an EKG and Echocardiogram, were unremarkable.

One night at work I had to go to the ED because I was having so much difficulty with breathing. I was diagnosed with possible asthma, given albuterol, and sent home with a prescription for a course of oral steroids. Despite the treatment, over the course of the next few weeks my breathing declined. I went from being able to run a 10K to getting winded and short of breath walking across a Target store. I wracked my brain trying to figure out why asthma would just “pop up” suddenly when I was in my mid-thirties….

I had pulmonary function tests and a methacholine challenge, to look for exercise-induced asthma, about 6 weeks after my symptoms first started, and everything was normal (I did not have asthma).

I began to notice that my chest tightness/wheezing would occur shortly after eating. Around this time I was back to work and eating a lot of Apple Cinnamon Chex and KIND bars for both snacks and meal replacements. I began to keep a food journal and discovered that all the the following foods were triggers for my symptoms: Apple Cinnamon Chex, raisins, wine, Juices, KIND bars, eggs, certain bottled waters, balsamic vinegar, shrimp, and anything that contained molasses as an ingredient. I looked at a box of Apple Cinnamon Chex over and over until I saw the words “contains sodium sulfite.” I did a web search for foods that contain sulfites, and I found that ALL of my trigger foods were on the list. I discovered that I had a sulfite intolerance, which is also called a “sulfite allergy.”

FAQ about about sulfites:

What are sulfites?

Sulfites are sulphur-based compounds which are added to foods and supplements as a preservative and/or flavor enhancer. They may also occur naturally. Sulfite sensitive individuals need to avoid all of the following:

  • sulfur dioxide
  • sulfurous acid
  • sodium sulfite, sodium bisulfate and sodium metabisulfate
  • potassium sulfite, potassium bisulfite and postassium metabisulfite

What foods contain sulfites?

  • Baked goods
  • Beverages (including beer, wine, hard cider, fruit juice, vegetable juice, and tea)
  • Bottled lemon and lime juice (concentrates)
  • Condiments
  • Cornstarch
  • Dried fruits
  • Dried and/or processed potatoes
  • Fruit toppings/jams/jellies
  • Gravies
  • Maraschino cherries
  • Molasses
  • Sauerkraut
  • Shrimp
  • Soy
  • Vinegar
  • Wine

The most comprehensive list and forum to check out regarding sulfites is the website: www.holdthesulfites.com.

Sulfites can be present in medications. A lot of generic acetaminophen tablets and other OTC meds contain sodium metabisulfite.  Cornstarch, which is sulfited during processing, is a filler in a lot of pills, and depending on the degree of one’s sulfite sensitivity, may trigger a reaction.

Why do people develop a sulfite intolerance?

We do not know. Most of the scientific papers about sulfite allergies are case reports which were published back in the 1980s (most are in French). Some theories I have come across on the internet regarding why a sulfite intolerance develops include that sufferers may have a partial sulfite oxidase deficiency (a full deficiency is fatal, so perhaps we are “carriers” of the gene and express some symptoms), or that symptoms are due to a deficiency of molybdenum, which is a mineral cofactor in the breakdown of sulfites. Other lines of thought are that the intolerance is related to an environmental exposure of some sort and/or is immune-related (a non-IgE mediated food allergy). In my interactions with others with this problem it seems like a lot of us have either Celiac Disease or gluten sensitivity. But, this is all anecdotal, as there is no research out there (and as far as I know, no one doing any research into the problem of sulfite issues).

How is a sulfite intolerance treated?

The most important thing is the obvious: avoid sulfites! However, this is easier said than done! The only mandatory labeling is for foods and drinks with a lot of sulfites added in, such as wine,  beer, and hard cider. Other foods which contain sulfites, such as dried fruits and KIND bars, do not have mandatory labeling. I have been unable to find any GF, sulfite free beers or hard ciders. The main sulfite free wine makers are Frey and Orleans Hill. I am partial to the Orleans Hill’s Zinfandel, Syrah, and Cabernet, and am slowly getting used to bringing my own bottle with me when I socialize. Many people report a lessening of symptoms while taking Molybdenum. I tried Molybdenum, and, unfortunately, and it did not help me. Other supplements which I have seen recommended include Vitamin B12, Magnesium, and Probiotics. It also never hurts to have an Epipen (or 2) around, just in case of a severe reaction.  Ironically, though, Epipens do contain sulfites as preservatives!

How are sulfites metabolized?

Sulfite Metabolic Pathway (from http://pathman.smpdb.ca/pathways/SMP00041/pathway):

Sulfur_Metabolism_a

Update January 2014: Since writing this post last spring I discovered that my sulfite intolerance is the result of an immune system disorder called mast cell activation syndrome (MCAS) and I have since started on a treatment regimen.  Please see my recent post on MCAS for more details. Thank you.

References/Links:

1. www.holdthesulfites.com: This is hands-down the most comprehensive resource out there for those who are suffering with sulfite issues.

2. “Allergies and Sulfite Sensitivity.” www.webmd.com. 2012.

3. American Academy of Nutrition and Dietetics Nutrition Care Manual (accessed 8/10/12)

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

24 thoughts on “Happy Sulfite Intolerance

  1. Kristin

    Thank you for sharing this information. I have had this ‘sulfite intolerance’ for just about as long as I have had Celiac Disease… but never realized how many things actually have sulfites in them. I have had strong reactions to wines… so I have had to cut wine from my diet completely. I also have to read GF beers & cider labels carefully for ‘sulfite’ information. I haven’t seemed to react to too many other foods with sulfites in them (other than protein bars – they must have a higher than normal amount of sulfites in them?) Anyway, thanks again for the resource information.

    1. Jess Post author

      Hi Kristin,
      There really seem to be more and more of us with this same problem. There is actually a Facebook group devoted to sulfite allergies/intolerances and it seems like the bulk of us are females in our mid 20s to mid 50s who have either Celiac Disease, non celiac gluten sensitivity, or I.B.S. The sulfite issues must be somehow related to our gut health, but there is so little information out there about this problem. Soy protein is pretty high in naturally occurring sulfites, so if the protein bars you cannot tolerate have soy protein in them, then it is probably a sulfite thing.
      My sulfite sensitivity has waxed and waned over the last year and seems to be connected to my GI system functioning. In the weeks following gluten contamination I am more sensitive to sulfites than at other times.
      Have you been able to find a GF beer or cider that does not have the “contains sulfites” warning? I do miss Angry Orchard and New Grist and New Planet. I am not a big drinker, but do like to be able to have a drink once in a while.
      Thanks!
      Jess

      1. Sheila Thomas

        I’ve had good luck with the Peak Organic IPA and others in their lineup. Technically anything with a legitimate German purity law sticker should also be safe. With those I may have one and not test limits in the event the brewery was purchased by less honest labelers.

        I am almost 56 years old and had my first sulfite reaction at age 10. While I did everything I could to eliminate reactive foods as discovered, I still had no idea as to what was affecting me. Not until I started going to the wonderful Dr Lisa C. Kaufman did I have have medical support. Twenty years ago she acknowledged the possibility of such, but admitted that western medicine hadn’t a cure. But I noticed as I had reactions to medications she fiendishly researched new scrips for me.

        I had exercise induced asthma at worse, but the migraines, IBS, fog brain (in a profession where I’m paid to think as are you), vomiting, swelling, extreme fatigue and a creepy gray pallor. The other common symptoms exist but pale in comparison, though the urinary tract swelling exacerbates blood pressure issues. Sadly we’ve not found a fully sulfite free diuretic.

        When I found the “Allergy Sourcebook”, I found the first worthy indicators to a productive life. By then my doctor had suggested B-12, an H-1 and H-2 inhibitors. While the trio vastly improved my quality of life, nothing came close to making me feel human until molybedum. It’s not a panacea but with the daily combo above, I’ve had far better attendance in both work and life.

        I don’t want to be disabled and eat as organically as possible. But a spate of recent layoffs has left me unable to eat as I wish.

  2. Ellie

    Hi there,

    I was just diagnosed with latent celiac disease. I have known that I have a sulphite intolerence for a few years now and I do fairly well staying off of sulphites. It does not cause asthma in me, instead I get head aches and/or my face puffs up. If I eat enough my body retains a good 4-6 pounds of water overnight. I recently started eating kind bars, the version without dried fruits or coconut. I understand that those with dried fruit would have sulphites in them but do you think the fruitless bars have them as well?

    1. Jess Post author

      Hi Ellie,
      Thanks for writing. I am sorry to hear about your latent celiac disease diagnosis, but you are definitely not alone. I have interacted with tons of women online who have both a sulfite intolerance and either celiac disease and/or IBS triggered by gluten.
      The last I checked, the non fruit and coconut KIND bars contained soy protein (soy has a high load of naturally occurring sulfites) with the exception of the Almond Cashew and Flax seed one. I have not been brave enough to try it because I am rather sulfite sensitive, but perhaps it’s okay? Also, a lot of us on the sulfitesnomore Facebook group have experienced improvement in symptoms with probiotcs and Molybedenum suppplements.
      All the best and thank you for reading!
      Jess

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  4. Nicholas

    Hi,

    I am a very sensitive celiac who is being treated for other metabolic issues related to weight loss. In the course of treatment, I began to experience asthma-like issues which developed to throat-constricting anaphylactic shock symptoms. By process of elimination, we discovered it was the alpha lipoic acid (ALA) I was taking twice a day.

    ALA is an organosulphur compound, and in my case was acting as a chelating agent for mercury in my system. A short course of chlorella triggered a different set of debilitating symptoms consistent with mercury reactions, as well. I found your site because I was searching for ‘celiac’ and ‘sulfites’, and also ‘celiac’ and ‘mercury’.

    For a long time I was having problems with red wines, until I found a couple of organic wines made without sulfites which don’t bother me. Anyway, I just wanted to mention the parallel connection to sulfur and sulfites – in addition to an outright sensitivity, there is the possibility that these compounds may be acting as cheating agents, and that some of the reactions may be to the mercury being released by them.

    Nick E.

    PS: Thanks for the great blog!

    1. Jess Post author

      Hi Nick,
      Thank you for taking the time to comment and share your story. I will admit that I had never given a thought to the fact that chelation may be involved in all of this. Do you have any references and/or links to web sites regarding this that I (and others) could check out? Did you have mercury levels in your blood measured?
      I am glad to hear that you figured this out for yourself. I am continually surprised by how differently all of our bodies react to different stresses/medications.
      Jess

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  6. Thea

    Sulfite sensitivity can be due to genetic anomalies in the methylation/sulfation process of our detoxification system. See Dr. Amy Yasko, Ph.D. website for explanations.

    1. Jess Post author

      Hi Thea,
      Thanks for much for sharing the information about possible MTHFR and other mutations that may lead to an inability to metabolize sulfites. Since writing this post I have learned that my sulfite allergy/intolerance stemmed from undiagnosed and untreated mast cell activation syndrome (MCAS), but perhaps some others may find some relief from following Dr. Amy Yasko’s protocol. I can say, anecdotally, that I feel like my overall health improved when I switched from taking folic acid supplementation to taking 5-methyltetrahydrofolate, which I believe is something that she often recommends.
      Jess

  7. Judy

    Thank you all for the invaluable comments. I have a severe sulfite sensitivity as well as a wheat allergy. I have also become sensitive to other grains, quinoa and foods that I now know have a high level of naturally occurring sulfites. Broccoli, cabbage, etc. The reference to soy having a high level of naturally occurring sulfites was new to me as I am also seen allergic to soy. Does any one know where a good trusted food list for naturally occurring sulfites can be found? For example would peanuts be on the list? Would love to be more informed about if a person is sensitive to a food because of the natural sulfites (soy), does that mean they are sensitive to all legumes?

    1. Jess Post author

      Hi Judy,
      Thank you for stopping by. I have not been back to this page for a while, but since writing this last year I learned that my sulfite intolerance/allergy is a result of an immune system disorder called mast cell activation syndrome (MCAS). If you go to the main page of my blog, I just wrote about it my experiences with MCAS earlier this month (January 2014).
      Because of this, I have been less active in my reading and research about sulfite issues, but as far as I know, Tracy’s website Hold the Sulfites (www.holdthesulfites.com) is still one of the best resources out there. That being said, if you have issues with sulfites and wheat and soy, then it may be worthwhile to check into the possibility of MCAS. I hope that this helps!
      Jess

  8. Karen

    I like Badger Mountain Chardonnay very much, they have a variety of USDA Organic wines. Although I can’t find it in any local stores, I did ask them all if they could get the wine, and one of them has a distributor from which they can order the Badger Mountain. I hope this helps you!

    Karen

    1. Jess Post author

      Hi Karen,
      Yes, I’ve had Badger Mountain too. Although it’s not available to me locally, I’ve found it at several Whole Foods while traveling through the US.
      I haven’t been too active with discussing my sulfite intolerance as my symptoms have improved dramatically since starting on treatment for overactive mast cells last year, but I do stick to sulfite free wines and ciders only.
      Thanks for your help and sharing!
      Jess

  9. kristina

    Greens gluten free triple blonde ale has 0ppm sulfites! I called and asked and it is labeled as such! Strong beer too! I am terribly sulfite intolerant. Many trips to the er. This beer does not trigger me. I was so happy to find something i could drink!

    1. Jess Post author

      Kristina,
      Thank you for the suggestion. I haven’t seen Green’s locally, but I know that they have it where I’ll be traveling later this week.
      I will definitely check it out. I’m not a huge drinker, but it is nice to have a GF beer every once in a while.
      Jess

    1. Jess Post author

      Hi Marnie,
      Thanks so much for writing. I had 23andme testing done about 1 year after I discovered my sulfite issues, and I do not have any of the MTHFR, CBS, or SUOX mutations. I used Genetic Genie to analyze all of my raw data, which was really helpful. As far as I know, MCAS has not been shown to be related to any of these mutations either, but there are some other genetic mutations that may be implicated in MCAS. As my life settles down in the next few months, I hope to be able to write more about MCAS and some of the latest research regarding it.
      Thanks so much for sharing the link.
      Jess

  10. Holly

    I discovered I was sensitive to sulfites about 3 years ago, but it was about a 6 year miserable journey to get there! I have asthma, wheezing, stiff/sore joints and horrible headaches if I really do myself in. Now that I am aware of what to avoid, I just suffer from mild to severe headaches. I have noticed that my sensitivity seems to be in overdrive during my hormone shifts in my cycle. Am I crazy or is there a reason for this?

    Also, I have tried the sulfite free wine and had success once and suffered the second time. How many glasses can you tolerate in a 48 hour period? I drink nothing but water (from our tap only) and coffee. I so miss having options to drink, but I have gotten used to it for the most part. Is there any suggestions for what you find “safe” to drink?

    Last question: You mentioned that generic acetaminophens have sulfites. Would this include Tylenol? I know if I take anything with NSAID on the label, I’ve got problems.

    Thanks for all the posts. Without the internet and people sharing their experiences, I would still be absolutely miserable!

    1. Jess Post author

      Hi Holly,
      Thanks for stopping by.
      Yes, my sulfite issues seem to be somehow related to my menstrual cycles too. I most sensitive the weeks before and after my period. I have no idea why this is.
      The most sulfite free wine that I can drink at one time is about one glass, as if I drink more than that much I still feel like my MCAS flares up. I have had the best luck, from a sulfite standpoint, drinking some of the GF beers. I can also tolerate vodka and sake (both sulfite free) but do not like the taste of either. Outside of that I drink mainly water and coffee and will have an occasional cup of tea.
      I have found sodium metabisulfite in generic, OTC painkillers, including aceteminophen but it is always listed as an ingredient.I have definitely seen it in some NSAIDS when I’ve done label reading.
      I hope this helps.
      Please keep the questions coming, and please know you are not crazy (but I know how it feels to be in the position of questioning yourself).
      Jess

      1. Marble

        I have found that Kettle one vodka and club soda with A fresh real lime is my magic combo.

        Tonic has sulfites as does lime juice (as you probably know) but club soda I think is okay.

  11. Jesse Green

    Hi, I just found this site from google. I’m a 26 year old guy. I just drank a Angry Orchard Apple Cider. within minutes my throat/chest felt like it was seizing/choking/cramping. I’m guessing its from sulfites? I’ve had this problem on and off for about a year. I couldn’t figure out what was wrong. it was usually after eating but it seemed very random. some of my other symptoms are joints hurting, fatigue and I’ve also had canker sores since my teens, though i’ll go months without them and randomly have an “attack” and break out for weeks. I’m wondering about gluten, but it doesn’t seem to have an immediate effects.
    Any thoughts?

    1. Jess Post author

      Hi Jesse,
      It sounds like you’ve figured out the sulfite issue on your own. If you have any question at all about gluten intolerance/celiac (I’ve met many, including myself that seem to have sulfite issues secondary to celiac disease), then I recommend that you get tested for celiac ASAP, while you still have some gluten in your diet. Although many with celiac disease get sick within a few hours from gluten, others have a delay of up to several days before their autoimmune symptoms start up.
      I just read a study where 18% of undiagnosed celiacs had recurrent canker sores.
      Hope this helps! Also, there are a few sulfite free ciders out there, as well as wines and beers. Good luck!
      Jess

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