One Year Post Patch Testing: Ten Things I've Learned

It's been over a year since my first patch test and I'm so thankful that I was finally able to narrow down and avoid many of my triggers. Though I still struggle, I've learned a lot over the past year about dealing with contact allergies:

1. You can be allergic to anything

Literally anything. There are thousands of potential allergens, and even though some are more common than others, contact allergies can develop as a response to nearly any substance. There are even some people who are allergic to water—a very rare condition called aquagenic urticaria.

2. The endless possibilities of allergens can make narrowing down the culprit difficult

While the T.R.U.E test looks for 36 of the most common allergens, and the North American Comprehensive series has a standard of 80 (NAC-80), there are literally hundreds of potentials allergens that might be overlooked on a patch test. Even though extensive patch testing is costly and will never include the complete breadth of allergens, it is still a worthwhile step in the search for answers.

3. Keep looking for answers until you find them

After my first patch test identified several allergens, I still couldn't get my skin completely clear. This was because I had sensitivities to several items not included on the T.R.U.E. test and while I had eliminated all of my known allergens from my skin care products, I had unknowingly replaced several of my known allergens with ones I had not yet discovered.

4. The simpler, the better

Before developing contact allergies, I never gave a second thought to the ingredient lists on the backs of products. Now I make sure I know what every ingredient is, what purpose it serves and what its potential for sensitization is. And if a product contains any ingredients I deem questionable, I don't buy it. There is no reason to take chances with your skin.

5. Smelling "good" is not the same as not smelling bad

I use to equate cleanliness to pleasant fragrances—the smell of soap, shampoo, air fresheners, dryer sheets, perfume...  Little did I realize that "fragrance" is code for an undisclosed mixture of potentially toxic chemicals. There are thousands of approved ingredients that companies add to their products under the guise of fragrance, or "parfum," many of which I have no interest in putting on my skin anymore. So although this leaves me in large part fragrance-free, it does not leave me stinky. My hair and body doesn't have to smell like a fruit cocktail —simply not smelling like sweat will suffice. I've discovered that the freshest scent is no scent at all.

6. Allergens lurk in unexpected places

Take my nemesis, isothiazolinone, for example. Sure, it's in soap and sunblock, but did you know it can also be found in cleaning supplies, laundry detergent, fragrance mixes, latex paints, paper towels and toilet paper, air conditioning systems, printer ink and paper, markers and gel pens, glue and adhesives, rubbers, plastics, leather and other treated fabrics and materials? This vile substance is everywhere, which can make avoidance challenging.

7. Be careful who you trust

There are a lot of corporations out there making bold claims about their products with no evidence to back them up. Other companies' marketing is based on outright lies. Allergy sufferers need access to ingredient lists. Trying to get a company to tell you what is in their products should not be difficult. Consumers have a right to know what they bringing into their homes, whether they suffer from allergies or not. Yet the lack of regulation makes it all too easy for corporations to hide behind "trade secrets" and generic terms like "preservative." While there are companies out there who are taking steps to become more transparent—kudos to you, Unilever, for deciding to disclose your fragrance ingredients—we as consumers have to be careful with whom we chose to trust.

8. Beware of marketing ploys

Companies throw around phrases like "all natural," "hypoallergenic," and "dermatologist approved," yet with no legal definition for these terms, these words are meaningless. The product has shea butter in it? Well then, it's natural! They took out the parabens? It's hypoallergenic! These labels give unsuspecting consumers the illusion of safety, luring customers in to buy a product that may be harmful to them. There are lots of people out there with undiagnosed contact allergens or "sensitive skin" that are constantly on the hunt for things that don't make them break out in hives. Before my patch test, I often fell for the hypoallergenic rhetoric only to find myself with a cupboard full of products that contained methylisothiazolinone—one of my main allergens.

9. There is a need for better education

I suffered for years, being passed from doctor to doctor before I finally found a dermatologist that believed in patch testing. Whenever I tell people about my allergens—even people within the medical field—they look at me like I've grown a second head. Yet contact dermatitis is one of the most common conditions out there. It's insane that there isn't more awareness being raised for this affliction.

10. You can't let contact allergies hold you back

It's tough. There are days when I don't want to face the world—days when I just want to stay locked up inside my safe little house. But if I don't get out and live my life, then these stupid contact allergies have won. I refuse to give them that sort of power over me. Does being allergic to everything change the way I face the world? Sure. Travel requires much more planning. A simple trip to the store can turn into a nightmare. (Don't touch that cart handle! Quick, avoid the air freshener aisle!) And I have to be careful about what I touch when I'm visiting friends so that I don't wind up with an oozy rash. (Uh oh, did you just clean this counter with Lysol?) But life is too precious to be cooped up in a bubble. I've accepted the fact that I will be in situations where I'm exposed to my allergens. Yes, I will sometimes have to deal with itchy skin, but that's not going to stop me from putting myself out there!

Spring, Fall and... Cats? (How I Ended up with an EpiPen)

On top of having chemical allergies, I'm also allergic to nature...

I had my first test for environmental allergies when I was sixteen years old. I had been getting an absurd number of sinus infections, so my mother— no stranger to allergies herself—dragged me to an allergist and had him prick test me. While I wasn't a fan of the allergist (he was a close talker and kept pressing his junk into my knee) and the prick test itched like crazy, it was nice to know that my runny nose and itchy eyes had a cause.

After getting patch tested last summer, I decided that I should go visit an allergist again to see if another prick test would reveal any new information about additional food or environmental allergies. This time I loved the allergist I saw. She was friendly and incredibly knowledgeable, and unlike my most recent dermatologist, she took the time to talk with me and answer my questions. One of the first things I told her was that I thought I had an allergy to bananas because they have always made my throat itch. She smiled knowingly and said, "I bet you're allergic to ragweed."

I am allergic to ragweed. How did she gleam that from bananas?

Apparently there's this thing called oral allergy syndrome where the proteins in certain fruits and vegetables that have a chemical structure similar to the proteins in common environmental allergens can cause a contact reaction. Who knew that bananas were a cross-reactor to ragweed? I've told doctors in the past that bananas make my tongue itch and my throat swell up, yet none of them made the connection. This lady was on the ball!

Sorry Chiquita, you're no good for me!

So last fall, I went in prepared to have my skin poked at with itchy substances, yet my new favorite allergist informed me that a prick test wouldn't be necessary—she could determine my allergens through a blood test. Only one poke compared to dozens? Sign me up!

It took a few days to get the results, and the vampires down in the lab had to take several vials of my blood, but I was glad that the process didn't make me itchy. I've had enough of itchy over the past couple of years!

So how does a blood test work? Well apparently it detects antibodies to specific allergens. Through this process, my allergist was able to test me for food allergies as well. It turns out that I'm not actually allergic to bananas... so her suspicion of oral allergy syndrome was likely correct.

So what was I allergic to?

I had expected the test to come back positive for mold and dust mites, as I remember those being allergy triggers in my original test. However, I was negative for both of these. (Which would be nice if it means I've outgrown some of my allergens). I was also negative for all of the common food allergens that were tested for, including celiac disease. (Yay!)

I was positive for grass pollen and ragweed, which was really no surprise to me. My allergies always kick into high gear in the spring and fall—a common sign of grass and ragweed allergies.

What was a surprise to me however, was my positive reaction to cats.

...Cats?

How can I be allergic to cats? I want a second opinion!

Who could be allergic to this face?

I love cats. Ever since I was four years old and we got our first cat—aptly named Kitty Cat—I've been a bit of a cat fanatic.

Fanatic might be putting it mildly... Alright, I'll admit it. I'm a crazy cat lady.

...because sane people don't knit their cat sweaters.

Needless to say, I was a little distraught with the diagnosis. So I contacted my allergist to ask what this would mean for me and my four furry house guests. She assured me that my reaction to cats was a mild one—really more of an irritant—and that unless I developed problems, I could keep my furry friends.

Thank goodness! (I laughed at the idea of my cats being a "mild irritant." I couldn't have described them better myself.)

One of the things my allergist mentioned was that immunotherapy might be able to reduce some of my seasonal allergy symptoms. Traditionally, immunotherapy has been done through allergy shots, but I immediately ruled these out due to my dislike of being stabbed with needles. (I'd make a terrible heroin addict.)

However, it turns out that I hit the allergy jackpot because about two year ago the FDA approved the first sublingual immunotherapy tablets for ragweed and grass allergies—Ragwitek and Grastek, respectively. They're pretty cool, actually. Created by Merek, Ragwitek and Grastek are dissolvable tablets that contain active pollen. They are taken daily starting about 12 weeks before the kick-off of allergy season and continued until the season ends. They're not a pill—you don't swallow them. Instead, you simply put a tablet under your tongue and wait for it it dissolve for a minute or so. The idea is that by slowly introducing your body to small amounts of an allergen, it will help build up a tolerance and eventually desensitize your immune system towards that particular irritant.

Well, sign me up!

My allergist thought that I was a great candidate for this treatment, and although I missed the boat for Grastek this year, I was able to start my first dose of Ragwitek last week. I had to go into the doctor's office to take the first tablet, mainly because when you purposefully introduce a known allergen into your system, you are putting yourself at risk for anaphylaxis. This is rare, of course—oral itching and irritation are much more common side effects—but because it is a risk, I was prescribed an EpiPen.

There's a needle in that, right? I pray I never have to use it.

The first week has gone well. I love how simple it is: Pop the tablet out the packet, place it under your tongue, wait for it to dissolve before swallowing and then wait five minutes before eating or drinking. The hardest part has been the trying not to swallow bit.

So far I've noticed a bit of pressure in my ears and sinuses shortly after taking my dose. Nothing too extreme—certainly not as bad as my typical reaction to ragweed every fall. The hope is that this treatment will help to greatly reduce my seasonal allergies, and if that's the case then a little bit of sinus pressure is worth it. I'll let you all know how it goes.

As for my potential cat allergy, there's not much that can be done. Do you think it could be considered immunotherapy if I rub a cat on my face daily?

Seems to be working for me so far!

Isn't Gold Supposed to be Hypoallergenic?

I had a friend who use to get rashes from cheap jewelry, so I've always tended to lean towards necklaces and earrings labeled "hypoallergenic" or "nickel-free." When it comes to jewelry, nickel seems to be the most common allergen and many different metals contain some nickel content — even the lower quality golds.

I've been trying to buy nickel free jewelry for years — usually this meant purchasing items that were gold or sterling silver. But it turns out that nickel is a non-issue for me — at least at this point.

The most surprising thing about the results from my T.R.U.E test was the positive reaction to gold sodium thiosulfate, or gold salt.

Oh man, the gold patch burned! It flared up the worst and itched for months after the test.

The nurse who removed my patches said that she had never seen anyone react so strongly to something. Yet my dermatologist was completely unfazed. She told me that gold has a high rate of false positives, and it looks like there are studies out there that back that up.

But just because gold can show a false positive doesn't mean that it's always a false positive. If that were the case, there would be no point in including it on the test.

Research also shows that although an allergic contact reaction is more common to gold salt than it is to elemental gold or gold alloys, it is certainly possible for gold jewelry to cause dermatitis.

My grandmother was allergic to gold. Like, actually allergic to gold — not just the nickel content that is in many golds.

Which leads me to wonder... do allergies have a genetic component? Perhaps.

I haven't been wearing a whole lot of gold jewelry lately, but looking back I remember that my favorite necklace (which happened to be white gold) always left my neck a bit red where it would touch.

I don't know if gold will end up being a long term problem for me.... I'm actually hoping that my derm was right and that it was just a false positive. Once I've got my skin all cleared up I'd like to see if I can go back to wearing my wedding ring. I miss it.

But for now I've switched to a tungsten ring. Better safe than itchy, right?

Three Handy Ways to Carry Your Soap

When you're allergic to isothiazolinones, one of the hardest things to get use to is lugging around your own soap. 

I cannot tell you the number of times I forgot to bring my soap into the bathroom with me in the beginning. Even more frustrating than that were the times when I had my soap with me, but I let my guard down for a moment and muscle memory took over—forcing my hand to automatically reach for the soap pump and dispense poison onto myself.

Woops... that's going to itch later!

But since forgoing mystery hand soap is key to getting your skin back to normal, I've found three easy ways to carry my safe soap around the world (or simply around the corner) with me. 

1.     Soap flakes in a packet

This is actually the method I came up with first. At the time when I was diagnosed, I had fallen out of the habit of carrying my purse. No purse equals no good place to store soap, and so I went with this option as the little packet could easily fit into the pocket of my jeans. This would also be a good option for any men out there with this allergy, as they could slide the packet into their wallet.

• Step 1: Take a bar of safe soap and grate it up into a fine powder with a cheese grater. (I found that the finer the soap was, the easier it was to dissolve.)

• Step 2: Place the soap in a tiny zip lock baggie. (I had a ton of these lying around the house, as I had ordered several hundred of them off of Amazon several years ago to make my husband and I daily pill packets. They turned out to be the perfect size for soap.)

The trick to this method is getting the soap fine enough that it dissolves quickly. To use it, I sprinkle a little into my palm, add a few drop of warm water, and then rub my hands together until it gets to a soapy consistency. For me, a softer soap that melts fast works the best, but if you're planning on storing it in a warm space then it might be better to go with a harder bar that you can grate up into a powdery consistency. 

I’ve found that since these packets take up very little space, they are perfect for storing in a variety of places so that I'm never without soap. I have a packet in my purse, a packet in my wallet, a packet in my camera case, a packet in my computer bag, and a packet in the glove box of my car.

2.     Bar soap in a tin 

There’s just something about bar soap that makes it easier to use than the soap flakes. It’s so much quicker to work it into a rich and foamy lather, but the trade off is that you’re left with a damp bar of soap that you have to tote around. For that reason, I don’t use this method very often, but I do have a few tins of soap slivers lying around for backup purposes.

• Step 1: Find a tin. (This may involve eating some Altoids. A co-worker actually gave me this empty mint tin over the summer after I told him about my soap dilemma. Thanks Steve!)

• Step 2: Find soap that fits in the tin. (While it should be possible to cut a small piece of soap off a bigger bar, this is something that I haven’t attempted yet—mainly because the combination of me and large knives usually results in an emergency room visit complete with stitches. Since I’ve been lucky enough to pick up small samples of soaps from various places that fit perfectly in my tins, I've thus far avoided the need to have to cut up a bar.)

3.     Tiny bottles 

This has become my go-to method, as I prefer the feel of liquid soap. It’s also the one that includes the least amount of prep work, which is always a plus for me.

• Step 1: Buy a tiny bottle of soap. (Or alternatively, buy a tiny bottle and fill it with soap.)

I like that Dr. Bronners makes their castile soaps in 2 oz. bottles. I’m able to get them locally at Target, Whole Foods, and specialty shops, but they’re available online as well. 

I love these so much that I’ve started buying them in bulk! I keep one in my purse and one in my travel bag because it also makes a great body wash. I have also started hiding them in places that I go often. I keep one at work, and I have one hidden under the sink at my parent’s house. I think I’m going to start stocking them at friend’s homes soon, as I always have trouble remembering grab my soap from my purse when visiting people. (And I don't want to make a habit of having to go through people's showers to find a soap—any soap—that doesn’t contain methylisothiazolinone.) 

Getting used to carrying around your own soap is one of the hardest adjustments you’ll have to make with this allergy. But with a little planning, you can easily eliminate your risk of exposure from restroom soap dispensers. 

Now if only we could figure out a way to outlaw public restroom air fresheners! 

Allergic to Isothiazolinone? You Can Probably Relate To This List:

1.     You feel as if the world is out to get you. When you first got your patch test results, you might have thought “no biggie. I’ll just read some labels and get rid of anything that has ingredients ending in isothiazolinone.” But no. It doesn’t stop there. Half your products don’t list the ingredients. Others only list vague terms, such as “preservative” and “fragrance.” And the number of products that contain isothiazolinone in one of its various forms is mind-boggling. This poison is everywhere; you trust nothing.

2.     You’ve become an expert ingredient reader. You can pick an isothiazolinone out of an ingredient list in three seconds flat—even the ones where they try to trick you by splitting up the name between two different lines. Take that methylchloroisoth-

      iazolinone!

3.     You actually know how to pronounce methylchloroisothiazolinone. People look at you funny when you say it without stumbling.

4.     You’re suspicious of anything labeled “free & clear,” “hypo-allergenic,” “natural,” “green,” or “organic,” because you know that these terms are used all willy-nilly and are no guarantee that the product doesn’t contain harmful ingredients. You feel sad for the people who proudly use these allegedly “environmentally safe” and “healthy” brands. Little do they know…

5.     You can no longer shop at Walmart. Trying to find soap that you can use at any mainstream store usually results in a mental breakdown. You pick up a product, read the ingredients and find yourself struggling to resist hurling the bottle to the floor. And to top it off, getting anywhere near the air freshener aisle makes you ooze for weeks! Speaking of ooze…

6.     The camera roll on your phone contains hundreds of rash pictures. You know, just in case your dermatologist wants to see the day-to-day progression of your latest flare. (Trust me… they probably don’t).

7.     You’re not sure you fully trust your dermatologist. They don’t seem particularly read up on MI/MCI issues or even contact dermatitis in general. Didn’t they go to school for this? Why are they still handing out samples containing common allergens to eczema patients? One day you hope to find a derm who really gets it. You’ve heard they’re out there, but like the ever elusive four-leafed clover, you’ve yet to find one.

8.     You’re afraid to try new things or go new places. New products have burned you (quite literally) in the past. They’ve hidden MI in the fragrance. Or just “forgot” to put it on the ingredients list. You’ve found that few companies will give you a straight answer when you ask them to disclose what’s in their product. Becoming a hermit seems to be the safest bet for staying rash free. New environments make you break out.

9.    You’ve become that weirdo… the one that carries around their own hand soap. You refuse to pet your neighbor’s dog. You recoil in fear when someone tries to shake your hand. The smell of fresh paint makes you flee in terror. You’d rather pee in a bush than risk it in a bathroom that smells like air freshener. This allergy has unintentionally turned you into a hippie. You now rub yourself in hemp oil, talk about your organic soap nut laundry detergent and preach the dangers of the cosmetic industry to anyone who’ll listen—and anyone who won’t too.

10. Television commercials make you roll your eyes and shout obscenities at the T.V. “No! Don’t wash your laundry in that! What are you doing? You shouldn’t put that lotion on a baby. Don’t spray that air freshener. People are going to need a HAZMAT suit to enter the house!” You can’t believe the lies they’re able to tell the unassuming public. 

11. Traveling can be a nightmare. Airplane recirculation vents, toxic rental car cleaners, freshly cleaned hotel rooms and bedding washed in mystery detergent, crowded subway cars, Ubers with a forest full of those little air freshener trees—these things make for potentially itchy vacations. Good thing seeing the world is worth a little pain and inconvenience.

12. You’ve been called crazy. You’ve been told that it is all in your head. Nobody believes that someone could be allergic to such a tiny amount of chemical that’s in so many products. People act like you’re making it all up just to inconvenience them. But you’re not. Allergic contact dermatitis is a real condition and you are really suffering from it. Nobody would question someone’s peanut allergy; why don’t they believe you?

13. You’ve stopped telling people about your condition. You are sick of hearing people say, “Oh, if you just try such-and-such your eczema will magically disappear.” You’ve tried it all. It didn’t work. Allergies don’t work like that and you don’t want any more unsolicited advice. Sure, you probably should stop eating sugar and processed foods. And yeah, probiotics are a good thing to take for optimal gut health. You’re glad that the lotion your sister’s dog walker swears by works for him, but it contains one of your allergens and therefore is not an option… Why do people always think that they can cure you?

14. Despite knowing that there is no cure other than avoidance, you’ll try just about any snake oil to get rid of the itch. Bleach baths? Check. Apple Cider Vinegar? Check. Hemp oil? Check. Fermented cod liver oil and turmeric? Check and check. Does anyone know where one can get actual snake oil? You’ve heard it does wonders!

15. You would never wish this allergy on anyone. And that’s why you’ve become an advocate against MI and all of its biocidal cousins (MCI, BIT, OIT, etc). You know that it’s a strong sensitizer and as long as companies are still putting it in products, no one if safe from developing a contact allergy to it. And being allergic sucks.

16. Some days you are overwhelmed. You sometimes struggle to stay positive. But you refuse to let a single preservative ruin you life. You carry on, armed with your own hand soap and a new wealth of knowledge. You know that one day you will get this all under control. You know that you are not alone.