Sulfites and Me: An Ugly Combination

I talked about sulfite sensitivity recently.  Years ago my husband and I would go to Happy Steak (a place to eat when you were on a budget back in the day).  We would order steak and the salad bar.  It never failed that within hours after eating at the restaurant I would develop horrible symptoms.  My throat would itch, my sinuses would get swollen and congested, and my chest would tighten up.  This was followed by a trip to the bathroom where I could barely sit on the toilet because of the intense feeling I was going to pass out and my body feeling hot.  As if this wasn’t enough, after taking an antihistamine, my nose would run nonstop (imagine a water faucet in your head being turned on to full).  Then I would be freezing cold and just let myself lie on the bathroom floor covered in a blanket or my robe because I didn’t have the energy to move or the desire to be too far from the bathroom.

I visited an allergist out-of-town and mentioned these bizarre symptoms to her and what usually preceded them (usually a trip to a salad bar somewhere).  Wow!  She immediately knew what the culprit was.  She said I had a severe sulfite sensitivity.  She then proceeded to tell me that sulfites where on most items in food bars (lettuce, potatoes, fruit).  I was given a list of what sulfites were, what foods they were in and what to avoid.  At the time, there was a medical facility in La Jolla, a southern California town, where sulfite sensitivity testing was done.  From what I remember of that conversation, I would have to stay there a minimum of a week.  I would be under constant supervision as they tested me by having me ingest sulfites to see the minimum amount that it would take to cause a reaction.  My husband and I talked this over.  Going there would give me a sense of how sensitive and severe my sulfite sensitivity would be.  The only problem was that it really wouldn’t help me in terms of which foods I should/should not avoid.  At the time, sulfites were not required to be disclosed on food labeling.  Rather than make the trip and go through the risk of testing myself, we decided that I would just give up everything on the list.  I am not sure exactly how I came upon a Sulfite Support Group (there were no computer groups back then) but I was able to get a more detailed list and a newsletter in support of dealing with sulfites.

Fast forward several years.  We were having a special dinner with friends in their home followed by cards.  The menu we planned was steak and lobster tail along with baked potatoes and some form of dessert.  We had chosen lobster because Costco was having a seafood special and we were going to buy fresh lobster.  My husband and I were given the task of making the trip to buy the lobster.  We arrived at Costco only to find that they didn’t have fresh lobster.  Our taste buds were crying out for lobster and determined not to leave without it, we browsed and purchased frozen lobster tails.   The evening in the home of our friends had been wonderful, good company and delicious, mouth-watering steak and lobster.  With dinner over, we settled down to cards.  In the midst of our cards, my asthma starting acting up.  I felt kind of flushed and out of sorts.  We left early barely making home when the stomach cramps and congestion kicked in.  I was dying.  Every part of my body was rebelling.  In an attempt to make sense of this I had my husband call to inquire about the lobster packaging.  After digging through the garbage our friends confirmed my fears, the lobster had been preserved in sulfites.

I learned then and there that I needed to be a better label reader.  If I wasn’t sure about a frozen item I needed to avoid it and contact the company and ask questions.  In my next post I will discuss more about what sulfites are, other names of sulfites and what foods contain sulfites.

7 responses to “Sulfites and Me: An Ugly Combination

  1. Great thanks for sharing– looking forward to more information!!!!

  2. Scary. Sure sounds like anaphylactic/oid type symptoms too. Those pesky mast cells and their degranulation just wreak havoc too! I think I have sulfite issues. I think there’s so much cross over in MCS/anaphylaxis spectrum. The experts just need to get all their heads together. I cut out sulfites along with the majority of food when things were chaos. I don’t intend to ever add them back intentionally. Glad you are able to avoid them now! Do you carry an Epipen? (God forbid). Sad thing is the commercially prepared epipens have a sulfite preservative, but the majority of hospital ones do too. You can get epi injections to carry without it made up but they would have to be manually drawn up and would expire fast. I am rambling I’m sure none of this is relevant to you. I don’t ever intend to use it unless my tongue or throat swelling progresses so rapidly I know I might die. and I’ve already called the ambulance or on my way to the ER, as part of me doesn’t know how the sulfite in it will go nevermind the Epi itself. That being said it is the only thing that stopped my initial anaphylaxis in its tracks. And I know other people with sulfite allergies who needed Epipens for reactions and they worked. ANYWAY, when you mention the cold feeling and GI stuff it just screams anaphylactoid warnings to me and I would feel safest having an epipen just in case any reaction ever progresses to acutely life threatening, but hoping it just ends up being wall or pocket art 🙂

    • I do carry an Epipen. I also carry a vial of histamine when I am away from home. The histamine is something that I have used since my first visit to the Environmental Health Center-Dallas in 2002. During a reaction if I give myself a small injection of histamine (my neutralizing end point), my reactions usually stop. Sometimes it takes more than one injection (can have one every 15 minutes up to four times in a day). During a reaction my body begins producing too much histamine. By giving my body a small dose, it thinks it has enough and begins to quit producing more. The Epipen is my last resort. I did use it many times before I found out about histamine in Dallas. Once I had to take it at work and then have someone drive my husband to my school to pick me up and take me home. My histamine does not have any preservatives.

  3. SO glad you have rescue meds and that they work! Interesting about the histamine.

    • Yes, the histamine works great for me. I remember telling the traditional allergist that workers’ compensation sent me to about it. His response, “If it works that well, why don’t I know about it?”. Well because he is stuck in the dark ages and doesn’t believe mold can make you sick either. Dr. Rea is an amazing doctor.

  4. Very excited to find out more. This is fascinating and you write about it in an easy to understand way.

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