I thought it might be helpful for me to sort of…. have a post where I talk about my health. Even my own family is a bit confused, at times, about what the situation is, there. It’s something that’s difficult to talk about. It can feel alienating to talk about, and I feel scared of alientating people when I talk about it. Just thought I’d sort of… do it. To be known. I think things I say sometimes can sound extreme or scary, and so context is good to know.
I have two things: latex allergy and MCAS (mast cell activation syndrome).
Latex allergy
Latex comes from the sap of the rubber tree- a tree that grows in South America and Malasia. It doesn’t grow in the US; we import it for use in products. Latex allergy is a plant allergy- an allergy to the rubber tree. So it’s basically just an allergy to that plant, especially to its sap. We use its sap to make natural rubber products.
There are two types of latex allergy. One type is “type four.” It is a mild, no big deal, allergy that causes a delayed-reaction, usually a rash, sometimes the next day after wearing a bandaid. This is the type of latex allergy I had most of my life, and that most people with latex allergy have.
The other type is a “type one” latex allergy. Instead of delayed responses, it causes immediate reactions. And insead of mild symptoms, it can cause more severe ones. Within the group of people with a “type one” latex allergy, is a subset of people who are sensitized to small enough quantities of latex to be able to react to airborne exposures, such as due to being near latex balloons. That’s me.
It’s a progressive allergy, and when I had a type four allergy, no one warned me to avoid latex. That’s why it progressed from being type four, to type one. And even after I had a type one allergy, I wasn’t warned to avoid latex that didn’t immediately cause symptoms, like balloons. I continued to be around latex balloons.
Latex Fruit Allergy Syndrome
I threw parties like this, with latex balloons, making my allergy worse, without knowing it. It made me start reacting to foods that have similar proteins to latex, like avocado- something called Latex Fruit Allergy Syndrome. It’s basically the body reacting to foods as if the foods were latex, due to similarities in proteins. There’s a relatively short list of foods this applies to,
The “high” and “moderate” foods on this list that I’ve reacted to severely (ie avocado), I will more likely always react to, now, due to them having a stable allergy underneath their cause, but most of them have been mild reactions, and there are many things on here I’ve never reacted to. Peppers are currently a strong sensitivity, including to their smell, so much so that I even have to be careful around being to close to peoples’ breath with it, as is mango/the tropical fruits/melon/apple. I recently did fine with potato and tomato, so I’m hopeful about those. I’ve never reacted to citrus, apricot, plum, cherry, pear, pineapple, coconut, zucchini, most dried herbs. I can eat soy and wheat, and can eat most cooked berries. I recently tolerated peanuts, so I’m hopeful about that, and have only had issues with shelfish once, which I now know may have been due to a rubber band, instead of the fish. I’m able to be around and cook with tomatoes, and I expect this is also true of potatoes; I have never had a severe reaction to either of those.
If I recently have had a latex reaction, I’m at risk for developing new sensititivites to latex crosses, so these are sort of my “watch list” to be careful with, if I’ve recently had a latex reaction, especially the “high” and “moderate” ones.
In my marriage, I encouraged my husband to plan times to go out and eat everything he missed that I couldn’t have in the house, basically, and just not kiss me for a day or so (this last part has applied mainly to avocado/tropical fruits, apple, and tree nuts). Some families work through this by having separate kitchen areas, or even two homes, like two tiny homes. Having periods of togetherness and separateness works for a lot, at least around eating, with restaurants being important. I’ve worked to make sure my kids get exposed to and get to eat everything they need. Restaurants, friends’ homes, and school have all been very helpful. I cook nearly everything we eat at home from scratch, anyway, so they’re getting good quality there, and I like to garden.
Anyway. This is Latex Fruit Allergy Syndrome.
Treatment
Treatment for latex allergy is basically: avoid latex, take medicines. So that’s what I do. It’s difficult to avoid latex, when over 40,000 products contain latex, but it’s possible. It’s not a mystery or something magical, to identify where latex is and isn’t; it’s a matter of research, and (largely) asking companies product information.
I basically spend the majoty of my time at home, and in nature. These are safe places. I drive to and from the kids’ school, and to go on hikes and around town, and to see doctors. I’m working on extending my bubble of safety beyond this, identifying businesses willing to check to make sure there are no balloons, for example, and with outdoor seating for restaurants. It’s sort of an ongoing “figure it out” kind of thing, where I have to weigh risk against the importance of something. Some places have banned latex balloons county-wide; I hope to see that spread!
I’ve been able to safely stay in a hotel, though it takes careful planning. I can do most things, with careful planning; it’s something I’m figuring out in an ongoing way, along with making sure it’s worth a given risk for a certain event. I have a friend with latex allergy who has a latex-free-outfitted teardrop trailer. I think that’s an aweome idea for making it easier to travel. There are also latex detection dogs- something I’m interested in exploring.
Laws prohibiting latex balloons are the next frontier for latex allergy advocacy, as they truly are the biggest thing that limit me and others who are airborne allergic, out and about, especially in places like hospitals and schools.
Products
Things that are made of hard plastic like ABS, polyurethane, thermoplastic rubber, synthetic rubber (most stuff has this nowadays), “latex paint,” Lycra (copyrighted), glass, metal, plain wood, rock/stone etc shall tend to all be latex-free.
Sometimes, “latex” indicates natural rubber latex, that I’m allergic to, and sometimes it indicates synthetic latex, which I’m not allergic to. I spend a lot of time researching with manufacturers, because of this.
Latex can be in glue, rubber, bendy, sticky, stretchy, elastic things, sometimes in wood or paper if they source from rubberwood, carpet backing, and ink/paint. Furniture can sometimes be made with rubberwood- wood from the rubber tree. Natural rubber latex shoe soles, like Converse, are made of it, as are car tires. It’s in asphalt and particleboard, rubber bands, and envelope glue. Some chewing gum contains it, and some does not.
I have to tolerate some of it, because it’s impossible to avoid. I do fine driving in a car; I just don’t touch the tires. I do fine living in a house with particleboard; I just don’t directly touch it. It’s all on a gradient of “how much will this expose me to,” and finding a happy place.
The biggest issues are latex that I touch, inhale, or that goes into my body. So peoples’ clothes, latex balloon dust, and not eating food that’s been contaminated by latex gloves or latex rubber bands having been used on it, are the biggest things.
I rely on many others who also have latex allergy in Facebook groups, where we share tips for latex-free companies. There are many, and many are popular brands; most people already have a latex free set of clothes in their closet.
How it affects my life
I’m supposed to do my best to not have latex come into my home environment, especially the part of the environment that will go in or on my body. I ask people to try their best not to bring latex in. I kind of navigate this on a case by case basis. ie my kids all wear latex-free clothes, because they will be up in my face. I basically take a series of educated guesses and navigate risks as I go, depending on how long I’ll be around someone, how close we’ll get, etc.
Outside the house, I have more leeway.
I’ve been able to have people come stay for extended visits, who now have clothes they can wear for a week or more (a close friend who I intended to hug a bit), and my whole family now basically has a latex free wardrobe we’ve been building slowly. It’s just one of those things. Annoying, but after it’s done, done, things.
Here are some of my favorite sources of latex-free clothing (*disclaimer- allergic people, double check)
Athleta (most things are safe, check with employee)
Bali bras
Speedo swimsuits (most, check with staff)
TomboyX– everything is safe
ThirdLove bras
MeUndies– everything is safe
Levi’s– their jeans from their website are all latex-free, but only jeans/shorts/overalls. I personally like their 100% cotton ones and the ones with cotton/elastane or Lycra.
Primary (everything is safe, even fitted sheets! grown ups- shirts, hoodies, jackets, and all kids’ clothes, kids’ swimsuits, underwear, jeans, PJs, dresses etc)
Cottonique (everything is safe- I like their underwear, slips and tank tops, mens’ shirts, but, their sweaters are super thin, and socks aren’t great)
Q for Quinn socks are safe- but only their socks. I recommend their socks
Naadam 100% cashmere sweaters are all safe. I hate that they’re expensive. I wear these quite literally every day because I don’t react to them I haven’t found other brands that answer my questions
Shoes
Crocs– the basic crocs are latex free (not the ones with stuff glued on them)
Oofos are safe
All Vionic shoes are safe
Tsukihoshi kids’ shoes (should say EVA/TPR outsole)
Many, but not all, Old Navy clothes are latex free. It’s a good brand because employees tend to actually be able to answer the question
Most, but not all, Nike shoes are latex free. They will be able to answer the question, unlike some brands.
Big basic old mens’ button up shirts tend to be ok unless they’re stretchy or have had elastic added. The old kind doesn’t tend to.
Ink on t-shirts that is smooth and part of the fabric is fine; the kind that you can feel on top of the fabric often contains latex.
Suspenders, bras, underwear, socks, and hair elastics are often made of latex, but there are latex-free sources.
100% cotton things with no stretch tend to be very low-risk; it’s mainly an issue if elastic was added (and it won’t be listed on the label if it’s less than 1%, as a “trim”)
Other objects
Phones tend to be latex-free. Phone cases may or may not contain latex, but TPU is safe. ABS plastic is safe. All Apple products are safe. I use Apple and System76 computers- they’ve given me great product info. (I also have a safe ASUS PC- took me months to verify). Skullcandy products are all safe. Tigonderoga pencils, BIC pens, RSVP pens (marked latex free), most highlighters, Post-It notes, plain metal paper clips are all safe.
All Crayola products are safe, as are many toy brands. Stuffed animals are usually safe, if they don’t have elastic. Hard plastic is usually safe. We use lots of Legos and Magnatiles, Little People toys, silks, plastic toys, marbles, chalk, jumprope etc.
Actual physical CDs and DVDs themselves are safe, and records should be. Most musical instruments are safe, but rubber padding/wood species may need to be checked. I have safe TVs and safe mp3 players and Skullcandy speakers, for music.
I read using my Kindle. Book bindings can contain latex, but so far I have never reacted to a book if it isn’t being put right into my face. I do have to be careful around books, though, and may need to have someone who has handled books wash their hands before touching me (same thing with papers that have been printed outside of a known safe printer, as printers can contain latex in ink and rollers. This is partially an MCAS sensitivity). It’s safest to keep books out of the home in a place with small kids who grab things, while they’re so young they’ll just stick stuff in your face. I use things like lamination on art and papers, and plastic sheet protectors, to make it easier for me to personally navigate papers. I’ll also use clear packing tape to cover papery/inky things I just don’t want to come into contact with, sometimes, which tends to solve it as an issue.
Many art supply brands are safe, and many paper products are safe. I have safe art paper and origami paper.
All OXO brand kitchen stuff is safe, and of course all ceramic/metal/glass etc- (kitchen stuff tends to be overall safe).
Fake eyelashes are sometimes safe and sometimes not. Most actual makeup is safe, but the applicators may or may not be. All Clinique is safe; most major brands are. Opi nail polish is safe.
I have lists of hundreds of safe brands. I’ve had to go through my own possessions slowly, and it’s an ongoing process that most people with latex allergy take bit by bit, just an annoying, slow, but doable thing to have to do.
It’s impossible to totally remove all latex, and it’s required to just tolerate some risks- especially for things I don’t touch, or that don’t go in my body. If I don’t touch it, and it’s not actually known to be *made* of latex, and I don’t react to being near it and it seems low risk, then I can often sort of navigate around it.The primary thing I have to be aware of is what I directly come into contact with.
So basically… I begin with my body and work my way out. Does that make sense? The kids/things very close to me are more important for me to be aware of, with distance providing more protection. Root canals can contain latex if they are made with gutta percha, which, um, only impacts guests upon whom we perform dental exams.
MCAS
Mast Cell Activation Syndrome (MCAS) just makes me have more allergic reactions that aren’t always clear what caused them, and the triggers always change, so it’s just kind of a big question mark, but is not an allergy, but an immune system overreactivity, and people tend to have it go away after a few years when it flares, and sometimes come back during times of stress. My main symptoms are hives, and it currently it makes me sensitive to some fragrances, and I have food sensitivities that change/ have often gone away, like a one step forward, one step back cha cha. I have been in a flare since January 2024, that was triggered by stressful events. Symptoms have tended to be mild.
Mine is triggered by latex allergy, and stress, mainly. if I can avoid latex (which I currently do a great job of) and remove stress from my life, this will likely get bet better. It’s an annoyance more than anything. The greatest way it impacts me/others is if someone needs to shower after being near/in an allergen (ie lots of dust or pollen) and plans on being very up in my face, like my kids. It’s only an issue for when I become tribute playground equipment to the littles, right now, and varies based on how sensitive I am, and sometimes it isn’t needed.
Along with avoiding triggers and dealing with the root causes of MCAS (by far the most important things), there are also many medicines that treat MCAS, which I’m early in the process of exploring. I’ve tried one, and reacted to it, but may try again if/when my doctor recommends I do.
I apologize, and also your welcome, for more than you ever wanted to know. I’m also available after class for any questions, and if you’re a new latex allergy/MCAS sufferer, I can connect you with many resourses.
This is a lot of great info. Thanks for sharing!
thanks for reading!