Sulfite sensitivity

Sulfites. Ah, sulfites. The things that no one knows exist until someone you know starts being all sensitive about them.

I have been diagnosed with a “sulfite sensitivity.” First, what’s a sulfite? Well, sulfites, or sulfiting agents are inorganic salts that naturally occur in things, but are also used (created versions or otherwise) commonly as an antioxidant/preservative. So what does that mean? Well, that’s where things get tricky.

Most people have no issues with sulfites, or at least no noticeable issues, and can go along their merry way using and consuming them with no discomfort or reaction. For those of us who do, who are “sensitive,” there is most definitely a reaction.

Reactions can be mild; a headache, some digestive distress, fatigue; to life threatening; full on anaphylaxis; and everything in between. As it’s a sensitivity rather than a true food allergy, tolerance is individual. Not everyone reacts to a small amount, but lots of small amounts over the course of a day can add up to a large amount built up in the body, which may be beyond your personal tolerance, thus causing a reaction. So you can eat a muffin for breakfast and have no symptoms, but later that night, eat another one as a snack, and you break out in hives. The only way to know what your personal tolerance is would be to experiment, on yourself, with a potentially life-threatening substance. Ain’t science fun?!

And the last, possibly most frustrating thing about sulfites is there is not definitive list of what to avoid. Here’s why:

Sulfites have different names: sulfur dioxide, sodium sulfate, sodium and potassium bisulfites, and metabisulfites are some examples.

Sulfites naturally occur in some things: fermented products such as beer, wine or yogurt, grapes, onions, garlic, eggs…these are all things that I’ve seen included on various lists.

Sulfites can hide: labeling laws in the US at least are not very forthcoming with what is actually in a product. Sulfites can be used to create an ingredient, say lemon juice concentrate (stops the lemon juice from turning an unappealing color when exposed to oxygen –> anti-oxidant), but the end product may just say “lemon juice concentrate” without going into any of the details. Same applies for a whole slew of common ingredients out there.

Sulfites are in EVERYTHING….or are they?: I have found lots of lists of what to not eat when you have a sulfite sensitivity, or are just avoiding sulfites in general for health reasons, but I found no two lists which are the same. There are shorter lists by the sciency folk. But I’ve found they are also full of “may include” or “has been known to be.” That sounds more politically correct than sciency to me.

There are also all the testimonial lists. I have trouble with these as well, partly because I haven’t had the same experiences with everything on their lists, and partly because how do I/you/they know the reaction they had was from the theoretical sulfites, and not from something else?

Sulfites are mostly unknown: I have found very few restaurants (staff, chef, owners) which are aware of sulfites, and even fewer which include sulfites in their allergy menus. (Shout outs to Nando’s in the DC area and Pei Wei for including sulfites on your main allergen lists.)

I have actually been asked to leave a restaurant after asking about some of their ingredients. I explained just the sulfite sensitivity (it’s much easier to avoid mammalian meat), and when the waiter returned from talking to the chef, he reported that they would not be able to serve me anything. Translation: We don’t want to get sued if you react to something so please leave. Honestly, I kind of understand their position. It is a local, non-chain place, and in this sue-happy world we live in they probably can’t take the risk.

I have also been to chain restaurants where I have ordered chicken breast, no sauce or seasoning, and a side of steamed vegetables. I salted and peppered myself, and 20 minutes later I needed a bathroom, like now! ….and for the rest of the night. “Digestive distress” doesn’t even begin to cover the rest of my night!

And even if you find a place that lists sulfites, or a chef that is willing to divulge all his ingredient secrets, or at least tells you there are no sulfites, or you have even eaten the same thing at the same place before without incident….can you 100% trust any of it?

I say no.

Today, I trust no one but myself (and my sweetheart) when it comes to what I put in my body. In the beginning, I struggled, a lot. I lost weight. I ate a lot of things without thinking and had bad reactions. I searched and searched for a simple list of what not to eat, but couldn’t find it, so I compiled all the lists….which didn’t leave a whole lot of options left.

I have actually gone through the seven stages of grief over this!

Shock or disbelief: seriously?! Food allergies?

Denial: I’ve been eating ramen my whole life. It will be fine. Sooooooo wasn’t fine! Worst reaction to date!

Bargaining: ok, I can just have a little bit…. Sometimes this worked, sometimes it didn’t. Sometimes it was the food, sometimes it was my lack of self-control. Double-stuff’d Oreos!

Guilt: My kids don’t get as many treats because I can’t. I shouldn’t have eaten that…

Anger: Why do people put preservatives in everything?! It’s not fair! I eventually got over my outrage at big business and realized that a lot of the sulfites/preservatives are for longer shelf lives which allows for more food to be available at a lower cost which helps feed people all over the world.

Depression: I can’t eat anything. I’m never going to be able to have anything good ever again. I’m just going to be a sickly, sad burden on my family for the rest of all eternity.

Acceptance/hope. This is when things got better. I accepted that I just wasn’t going to be able to eat everything I wanted. I learned to appreciate the things I could eat. And as my health improved, and as I found my tolerances getting better, I now have real hope for overall health and wellbeing.