We are not alone!

Hello everyone!  I just moved to another state where I have to figure out what restaurants are safe to eat at. I had to explain to all the new people I meet why I am having nothing but ice water (LOVE that yummy ice water) at last night's dessert party my family was invited to.    I was so happy to get a little note from a blog reader named Whitney.  Her first coconut allergy was movie theater popcorn, just like me (and mine was when I was about 26 years old), years later I started finding out more things I'm allergic to.  We are like twins born apart!  LOL!   It reminded me that none of us are alone. No matter how many things we end up being allergic to, we can always be grateful for the things we are not allergic to.  For example, I can still eat chocolate.  Sure, it has to be pure chocolate not processed on the same equipment as anything I'm allergic to, but I still have that and many other foods left to eat.  This is just one example of the many sweet letters all of you send to me, so thanks, readers, we're all in this together.  I just wish I had more answers about the perfect shampoo for all of you. Oh, and I can't even begin to talk about makeup. . . last time I experimented with mascara it felt like my eyelids were being peeled back over the top of my head.  In any case, you'll like hearing from Whitney:

Dear Becky,

My name is Whitney and I am allergic to a lot of foods.  And as of Easter this year- I can add coconut/coconut oil to my list.  I went to the movies and had movie popcorn (for probably the first time in a very, very long time) and my tongue swelled up so badly that it was impossible for me to speak without being in a huge amount of pain.  My tongue also turned really white and looked almost like blisters on the side.  I had no idea what was going on- other than that I needed benadryl (and my mom!) right away.  I knew that something was wrong just because of the other allergies that I've developed in the past 7 years.  (I later called the theatre to see what the popcorn was made in to confirm the allergy- I would have never thought!!!).  I am turning 27 pretty soon, and when I was a sophomore in college I became allergic to nuts. One day I could eat them, one day I could not.  I was to avoid all nuts from that moment on.  I am always developing new allergies now... sesame seeds, pumpkin seeds, sunflower seeds, all nuts, some raw fruits and vegetables.  I had always avoided coconut in the past because I wasn't sure if I was allergic or not.  But now I know for sure that I am.  Even last week, I picked up some veggie burgers at the store, cooked one, took one bite, realized that I hadn't checked the back of the box for ingredients.  Within a few moments my mouth was tingly and I had to take a benadryl... the ingredient?  Coconut oil!! 

Last week I started my research on this new allergy that I have, and came across your blog.  I wanted to say thank you, because I learned a lot about new foods to stay away from (cool whip...wow!) and that I am not alone with this allergy.  I have days where it doesn't bother me (my allergies in general), and others where I just break down in a "why me" kind of fashion.  I have to be thankful that I am still able to eat eggs, wheat, dairy, gluten- which so many others are not able to.  Your blog was a breath of fresh air, and I wanted you to know how much it meant to me to see something written about some of the issues that I am constantly learning about. 

All the best, and thank you, 

Whitney

Thought provoking. . .

I don't know if any of you are NPR lovers like we are here, but this prologue to last week's This American Life actually made me kind of chuckle and feel a little bit better about my allergies. Go ahead and listen if you have the time. It's about people who eat what they are allergic to even though they know they shouldn't.

http://www.thisamericanlife.org/radio-archives/episode/462/own-worst-enemy?act=0

Coconut vinegar? Am I allergic to that?

Here is an interesting secret ingredient in some baked goods: Coconut vinegar.
What a weird concept. Take some coconut water and make vinegar out of it. Now, I'm not an expert on vinegar, but this stuff is not distilled, so it has to contain some sort of coconut-ness or else why would people bother choosing it over other types of vinegar?
Supposedly, like all these other coconut ingredients, it contains no proteins so you technically can't be allergic to it.
So what did I do? I really wanted to try some of these gluten free hamburger buns made by a San Antonio bakery called the "Little Aussie." The problem was, they had coconut vinegar as practically the last ingredient. So, by the time I ate it with the yummiest, biggest bison burger in the world at a restaurant called "The Cove", there was very little coconut I was actually eating.

The good news is, not only did I live, but I had no reaction whatsoever. No mouth itching, no hives, no face swelling. So. . . I am a human guinea pig I guess, and this stuff might possibly be harmless to the coconut allergic crowd, at least in tiny amounts.

"Am I going to have an allergic reaction to this shampoo?"

I know this might sound obvious to some of you, but you don't have to wash your whole body or head in a new product just to try it out. That could be really ITCHY and maybe even dangerous! Actually, PLEASE don't buy a brand new shampoo that you have never tried before and jump in the shower and scrub your whole head with it and let it get all over you without doing a simple little test first.

Take your new shampoo, and put a small dime-sized portion of it on your inner forearm. Rub it in with a Q-tip and leave it there without washing it off for 15 minutes. If it starts itching or burning before the 15 minutes is up, wash it off and put on some hydrocortizone or benadryl cream!! You are allergic to it and can now feel free to return the bottle to the store. If it doesn't bother you at all, you can feel pretty confident that the shampoo probably won't mess you up. That is, unless you have sores on your head or scratches. . . or get it in your eyes or mouth, that is a different case because your healthy skin can only absorb so much.

Also, some allergies are based on the quantity used. But the point is. . . start SMALL and don't have a huge allergic reaction blow up all over your body if you are trying new things.

Or, you can ask your allergist to skin test you in his/ her office with a new product. Just thought I'd state the obvious here because sometimes we need to be reminded of the basics of being an allergic person.

Surviving the Holidays with a Coconut Allergy

Time to be festive and eat lots of yummy things you wouldn't normally eat, right? Let's be careful and keep our epi-pens and benadryl handy just in case. Remember to read all ingredients!

Here is a summary of things to AVOID during the holiday season:

WHIPPY things- Cool whip means coconut oil. Some people make whole pies by simply mixing cool whip with other ingredients, so if you're at a pot luck, and you see a cream pie, beware unless it comes from a package and you can read the ingredients. We recently even saw some Jell-O brand mousse in a little cardboard packet that had coconut oil in it.

CHOCOLATES- Oh how I love to munch on sees candies and oh how very sick I can get even if a particular piece doesn't contain coconut. There is cross contamination aplenty in any brand of assorted chocolates. Don't play chocolate roulette.

ICE CREAM- Unless that Ben and Jerry's scoop shop that you are tempted to hit at the airport or Baskin Robbins at the mall has an allergy brochure handy, or you have the flavor ingredients memorized AND you ask them to wash the scoop before dipping yours AND scoop in a fresh spot that hasn't been touched, you may soon feel your throat closing up. . . just a reminder to not be crazy and try new flavors while on the road.

GOODIES you receive as gifts.- YES, I feel like a complete DORK when people bake for me and I have to ask them for all the ingredients to their goodies. But, no one has ever been offended. If they are gifting me something that I am allergic to, I just tell them how much my husband and kids will love them because they never get to have anything with coconut in it and it's a special treat for them.

RESTAURANT FOOD- when choosing a restaurant to visit while traveling or with friends and family, I avoid THAI food altogether because of my coconut allergy. There is coconut milk and coconut oil, etc. in practically everything there. Also, INDIAN food restaurants sometimes use coconut milk in their curries, so that can be really tricky to figure out. At other restaurants, before ordering anything fried, I like to scan the menu for things like coconut shrimp that might be fried in the same oil. It's highly unlikely that you would end up with even trace amounts of coconut in your fried food, but use good judgement if you have ever had an anaphylactic reaction to coconut. Desserts can be crazy at restaurants because they may cut you a piece of chocolate cake right after coconut cake, etc., so I am not shy about making it clear to our server that I have food allergies without making it into a hassle for anyone. Whenever I get a server who has no clue what ingredients are in anything and is reluctant to go find out, I just ask for a manager. That's what managers are for. If the manager doesn't know, well, that is a good sign that they don't make their food fresh in-house and that I am probably eating more MSG than nutrients. For great tips on eating out without feeling totally terrified and oppressed with food allergies (and for a lot of moral support) I loved reading Sloane Miller's book, Allergic Girl.

POPCORN- You know you'll pass your vacation time going to at least one movie! Movie theater popcorn contains coconut oil most of the time. Not just the extra butter you put on it. It makes my mouth develop what I call "blisters of pain and fire" within an hour of eating it and makes me feel very, very sick to my stomach. I just enjoy the smell. . . .mmmmm. . . and sneak in my own gourmet chocolate bar to eat instead. I let my husband and kids eat popcorn, and make sure I get lots of napkins and tell them "no touching mommy until you wash your hands."

COSMETICS- Oh, various types of chap stick stuff, why must you have coconut oil in you? Also, for the last few years it seems like soaps and lotions from Bath and Body works have been the go-to small gift of choice. I like to put these in my guest bathroom or just re-gift them. No big deal. As a reminder, here is a link to my (by no means complete) list of coconut-derived ingredients.

HOT COCOA MIXES- yikes. Many have coconut oil in them!

Did I leave anything out?

You may want to share Healthline's Interactive Guide on Anaphylaxis with your friends and family with whom you will be eating during the holidays.

Frequently Asked Questions

Hello all. Due to a recent uptick in coconut allergy activity, I have been receiving several emails (some frantic) asking for help. Most of the questions are the same thing, over and over, so I will post answers here:


Q: I think I'm allergic to coconut, but I'm not sure. How can I sort it all out?
A: Really, truly, if you have not been to see an allergist/ allergy doctor specialist please make an appointment. They can do skin tests and blood tests. Sometimes the skin tests have false positives, sometimes the blood tests have false negatives. Occasionally, you might need to do both. Keep a detailed food, cosmetic and skin reaction log before the appointment documenting all reactions for at least two weeks, because any good doctor will ask you to do this, and you will save a step if you already have it.

Q: What do you use for. . . laundry detergent?
A: I use All Free and Clear, or other unscented detergents, and just do a second rinse cycle.

Q: . . .dish soap?
A: I am fine if I use almost anything. I wear those sexy housewife yellow gloves and rinse well.

Q: . . . hand soap?
A: Kiss my face pure olive oil soap. Sometimes soaps with palm oils instead of coconut oil.

Q: . . . shampoo?
A: When allergies are at their peak, I sometimes use the olive oil soap or no soap and just use conditioner. Most conditioners don't have a bit of coconut in them! When there is build up, I can do a quick rinse with vinegar (don't get it in your eyes!).Usually I shampoo with things that have the least coconut ingredients possible. Sometimes they are not totally coconut free, but if it's just a coconut sugar or oil and it's the 10th ingredient and I rinse well, it doesn't bother me.


Q: What else are people who are allergic to coconut usually allergic to?
A: Sometimes just coconut, sometimes a ton of things. I have to mention here that there is something allergists call "Total Allergic Load." This means that if you are allergic to a lot of things, you will be having more allergic reactions and be more sensitive to the things you are allergic to. For example, a lot of people have fewer food allergies in the winter because their total allergic load has decreased when the ballistic pollen has all frozen over and their bodies get a rest from being hyper sensitive all the time. A few folks (very few) are also sensitive to Palm oil or Palm kernel oil as well as coconut because they are more closely related. Coconut is in NO WAY related to actual nuts like peanuts or tree nuts, but the brilliant folks who control food labeling will list coconut as a tree nut anyway.

Q: My skin keeps breaking out when I use this soap/shampoo/lotion/ detergent/ product, etc. that people say is coconut free. What do I do now?
A: You may not be having an allergic reaction. You could have another skin condition like eczema or dry skin or a fungus that a dermatologist can pinpoint and treat. Maybe you are allergic to a fabric, something in the air like a pollen, mold, or your pet. Maybe your spouse uses a product you are allergic to and you like to hug him/ her lots. I don't know, but at least I can give you lots of wild guesses, which any good friend would do, right?

More soaps!

Thanks to everyone for your emails and comments- they really are useful!
A special thanks to Kim who just sent this email:

Since the last time I contacted you, I have found a few more soaps. Native Mother Naturals makes a baby soap that is olive oil and avocado oil based. It is really gentle and way less harsh than the

Kiss My Face one. Also, there is an anti-itch soap that is sold in horse catalogues, but is also formulated for people. It smells like sulfur, but it works well on my face and seems to keep it pretty clear.

I talked to the owner of the company, and she HATES coconuts. She doesn't like anything about them; so, there isn't any coconut ingredients in it. I am going to include links to some really good

natural companies I have found. Most of them are local companies but can be found on their websites. Have you found any other shampoos you can use. I tried the Hugo one, and it stripped my hair

really bad. Plus, I am really allergic to phenoxyethanol; so, I can't use the conditioner you use either. My hairdresser friend told me my hair is oily; so, the vinegar and baking soda aren't doing the trick.

I will keep researching and passing information on to you.

Thanks,

Kim

http://nativemothernaturals.com/

http://www.supersalve.com/

http://www.egyptianmagic.com/

http://www.100percentpure.com/

As you probably guessed, not all of their products are coconut free. They all make really natural products that work.