I know I am long overdue in posting an update about my health issues. I keep hoping to find resolution and be able to post a nice, happy post with a little bow on it. However, it is becoming apparent that there will be no tidy wrap-up anytime soon. So, I will just let you know where I am with it at the moment. For those who find reading about the health issues of others a bore, feel free to skip this post!
The upside is that the patch testing gave me some answers! I am doing far better than I was doing in June through October. The downside is that my patch test results are hard to implement. Additionally, I seem to have become highly sensitized to things beyond those on my allergen list. I am still struggling to find products I can use and ways to navigate the world without getting sick. But, first thing first! Let's move on to the results...
For those just tuning in, here are some posts to give you some background:
After my week of patch testing, I was given my results in the form of a list and a little blurb about each item. My results indicated allergic reactions to 10 of the substances in the panels. Here is a quick and dirty rundown of the culprits:
My reaction to Balsam of Peru confirmed what I had already known: I react to fragrances/perfumes and many cosmetics. I need to explore more about how this impacts food and drink choices, but for the time being, I am avoiding things that say "natural flavors" in the ingredient list and am careful with the tea I drink. Citrus has always been hard on me, which makes sense in the context of this result, too.
I also found out that I avoid those hand sanitizer liquids and wipes for a good reason: they contain benzalkonium chloride, which I am allergic to!
Impacting my knitting...I had a mild reaction to 2 of the 4 red dyes (disperse red #17 and disperse red #11) that were tested. I went over the results with the doctor while I was wearing a red shirt and had been knitting a red sweater all throughout the testing experience, so obviously some things in my wardrobe and yarn stash are going to have to be put aside. I am hoping this one is temporary as there were 2 red dyes I did not react to. This might also impact food, but I am not sure of that.
Shellac made an appearance on my list, which is in way more things than I would have ever known. In addition to its use on wood, it is also called confectioner's glaze for use on candy, pharmaceutical glaze for coating pills and E904 when it waxes fruit.
I also reacted to Carmine, which is considered a natural way to color cosmetics like blush, mascara and lipstick. It is also used as a natural color in medicine, food and beverages. I am currently really thankful for companies that label their ingredients thoroughly instead of using vague ingredients.
I will not be using my standard antibiotic ointment anymore as Bacitracin is also on my list. Maybe it isn't supposed to itch so much when small cuts and scratches are healing?! Huh.
These ones are a mouthful: oleamidopropyl dimethylamine and cocamidopropyl betaine. I list these together because they are cross-reacting, which means if you test as allergic to one, you are supposed to avoid both of them. These are both used in cosmetics (lotions, shampoos, etc) as emulsifiers. and has, in combination with my other allergens, made finding shampoo and conditioner a nearly impossible task.
These are useful things to know and I likely came into contact with small amounts of these things regularly, but the real lightbulb result was an allergy to propylene glycol. I had never heard of propylene glycol until I got my results. I was tested for 2 different concentrations of it and reacted significantly both times.
When I was first given my results I was a bit disappointed because I didn't feel like any of the items on my list could have explained the explosion of health issues I experienced in June. Well, now that I have done hours and hours of research and reflected on what I have been exposed to this summer, I am pretty sure propylene glycol is the main culprit for the sudden onset of contact allergies and the intensity with which it took over my body. This chemical is everywhere!
Through my research, I learned that propylene glycol is used in ecigarettes, which I was exposed to a lot this summer. It is also used to make polyester, polyurethane (foam and waterproofing), various wood sealants, it's in cosmetics (soaps, shampoos, lotions, deodorant, nail polish remover etc), medicine, foods, beverages and many, many more things. For some of these things it is used in the manufacturing process (like polyester and possibly other synthetic fibers, leather) and would not be evident (or listed) in the final product so I am finding it really hard to get concrete information about what is safe. I know for sure polyester is an allergy trigger for me.
In the middle of June, we had gone camping with new gear (polyurethane coating on new tent, rain gear and dry bags that held our food and spare clothes, polyester sleeping bags and sleeping pad and potential propylene glycol exposure with the cooking stove fuel) right after visiting my dad (ecig exposure). The campsite was rustic and didn't have running water so I didn't shower. I think it was this prolonged, mega exposure from a number of sources that triggered the huge flare up. Then, I kept getting re-exposed throughout the summer. If I think back to my roller coaster of near-recovery and then re-flares over the summer, I can match them to propylene glycol exposure. Finally! Some answers!
I think I will leave it there for now. I have a lot more to say about propylene glycol, including another (!) enraging story about my medical experience, but I will save that for another day. Thanks for reading this long post. You are a trooper!