Thanks a lot, Xanthan Gum.

Last night, I was exactly one week into my new 48-food free diet.  And it’s been interesting, lots of corn, lots of quinoa, lots of chicken.  And only a couple of allergic reactions, and they were pretty minor.  (Now on the list to self-test: goat cheese, basil, and thyme).

They were pretty minor, that is, until last night. When I decided to try a gluten free corn bread mix.  And one that made me really excited, because it’s free of every popular allergen and dedicated to raising funds for allergy research, and that sounded like the perfect mix of sensitivity and cross-contamination-free product and love that I really needed.  The mix, in case you’re interested, is by Micah’s Favourite, a gluten free baking mixes company.  And for all I know, it’s the most delicious stuff ever, so I’m not slamming Micah’s.  But did it the mix send me into a tizzy?  In a word – yes.

I had made myself a light dinner – baked sweet potato with salt, pepper, paprika, and grapeseed oil; polenta  lightly fried in grapeseed oil and flavored with salt and pepper – and was baking the corn bread for a little additional starch.  Because until last week, I ate pasta at least three times a week for dinner and/or lunch, plus a bagel a couple of morning a week, and a week without wheat was like the worst Passover experience possible.  A girl needs her starches.

So I’m fine with my sweet potato.  Fine with my polenta.  Corn bread finishes, I cut a square, and take off that gorgeous little extra cripsy piece on the corner that got just a little browner than the rest of the bread, and put it in my mouth as I settle in to catch up on some Grey’s Anatomy.

BOOM.

It’s like the craziest migraine ever.  I think my sinuses are going to explode.  I reread the corn bread box.  Same ingredients as the polenta, save for some sugar I’d added, some oil I’d added (oh but I’d just eaten that same oil), water, and xanthan gum.  But I don’t know what xanthan gum is.  So I do what I always do.  I believe it’s psychosomatic and that I’ve gone crazy.

Note: I may be crazy, but not when it comes to food allergies.  The doctor took the picture to prove it.  Because I didn’t believe him.  Because so many people have failed to believe me throughout my life.  Thanks, guys.  Super appreciate it.

I decide to take a shower to calm myself down, plus the steam tends to help with breathing.  And the super hot water cleans the allergens out, sometimes.  It’s my go-to when I’m not in the mood to take benedryl yet again, and for minor reactions, it’s worked.  On the way to my bathroom, I feel this thump in my chest.  Like someone has hit  me with a baseball bat.  This has happened once before, in August, the one time I went to the hospital for this whole thing, and the moment I realized I’d developed some new allergy.  I ignore it.  And run to the bathroom to shower, and suddenty my stomach is displeased.  And here I notice I’ve gotten bloated from LA to NY, and have developed a hive on my stomach and two blotchy rashes on my neck/chest/clavicle area.

You’re probably hoping I decided it wasn’t psychosomatic and took benedryl or used my epipen.

Yeah, we don’t know each other very well yet.

I shower.  Try hard as I can to remember the lyrics to Nicki Minaj songs, because in my spare time, I’m learning to rap like her.  I know the words to Nicki Minaj songs in general.  But not then.  I couldn’t even get the tune.  I had no clue what was going on, but I knew I liked the water.

Finally decided to get out of the shower because I had to sit down.  Standing wasn’t ok.  I thought I might need help, and since I live alone, I called a friend.  He didn’t pick up.  I called again, which is my family’s code for “someone is dying, pick up the phone.”  He didn’t pick up. Called another friend.  No dice.  Sat on my floor some more.  Mustered the strength for benedryl.

My first friend, M, called back almost immediately.  And so I told him what’s going on.  But here’s the thing.  I believe in subtext and I don’t know how to ask for help.  So instead of saying, “Hey.  I need you to come over and help me go to the hospital because I think I need extra help and I’m scared,” I said, “I’m feeling weird, I’m in pajamas, I’m tired, I ate something bad, maybe I have a super saturation quota of corn and ate so much of it this past week my body is all like ‘eff you corn’ and now it’s hard to breathe and I don’t want to use my epipen because I’m in pajamas and I’m so tired and I took benedryl and plus if I was going to die, I’d have died but what if I die but I guess I won’t so I’m not going to the hospital because of the pajamas.”  If you’re reading this to support a friend or loved one with allergies: we don’t always know how to communicate what we need.  It’s hard to admit, especially if enough people have told you you’re crazy.  Especially if there’s not enough oxygen going to your brain.  Having a severe allergic reaction is like being stoned, and stoned people can’t communicate well or make good decisions.  So don’t let them make decisions.  Not that M was at fault.  At all.  In fact, staying on the phone with him curbed the panic attack that was starting and I felt loved and that’s important.  But I learned I need to communicate better.  Saying, “I can’t talk and breathe at the same time” isn’t convincing to someone on the phone.  Saying, “Talking to you is extremely painful and I need medical attention, can you come over and help me seek it” is helpful.  But hey, hindsight and enough oxygen is 20/20.

So on the phone with M, I took some hits from my inhaler, which is a silly thing to have because I have great non-asthmatic breathing, but it was once prescribed to me and the hospital people gave me some inhaler stuff and it was nice so I figured I’d do it, too.  I drank water.  I started laughing uncontrollably and no, nothing was funny but I had so little oxygen I couldn’t think straight.  Took tylenol for the migraine.  Was jonesing for a heating pad, but mine is filled with rice and I’m not supposed to touch rice.  Rubbed on a ton of vaporub.  That’s a trick I taught myself.  When my breathing is compromised but not fully stopped, when I feel so congested I can’t get the air out (this is for congestion blocking your breathing, NOT airwaves closing from allergies, and I’m the farthest thing from an MD so take what I say with a grain of salt) I slather on vaporub on my neck, chest, and back, and it soothes the pain and tightness and gives me some relief.

I was terrified to go to sleep.  I spent about an hour feeling like I couldn’t breathe and like someone was sitting on my throat, just chilling, paying no heed to the fact that their chilling was impeding my breathing.  The other friend, E, had called back, and we video chatted.  I told her what was going on and she said, “Xanthan gum? My aunt thinks that stuff is basically poison.”

Her aunt runs this amazing bakery called Breakaway Bakery that specializes in gluten free and popular allergen free foods.  Notice I say popular allergen free.  Because NOTHING IS ALLERGEN FREE. There are no foods that absolutely no one is allergic to.  So let’s not be misleading, or make people feel bad, or tell the public there are 7 allergens and everything else is fake.  Because you know what happens when we do?  People like me get pretty sick but are too scared that they’re crazy to seek medical attention.  But the point is, Breakaway Bakery is awesome, my friend’s aunt is really caring and knowledgeable, and their baked goods are delicious.  If you can eat them.

So I googled xanthan gum.  And sure enough, a number of people have written about xanthan gum allergies.  And Wikipedia explains that it’s made from the same bacteria that causes black rotting on broccoli, cauliflower, and leafy greens.  If there’s every been anything I’m sure of it’s that Wikipedia is never wrong (once I believed an article that said quinoa is a spinach seed, even though I knew that was preposterous…and no, I don’t really believe Wikipedia is never wrong.).  The thing I’m sure of is that I’m pretty damn allergic to broccoli, cauliflower, and especially leafy greens.  And that maybe I was allergic to xanthan gum, too.  This article brought me a ton of comfort – other people had a similar reaction!

E debunked my super saturation of corn theory.  Which I appreciate, because without corn, potatoes, rice, and wheat, I’m a little bit screwed.  A girl cannot live on oats and rye alone. (And I mean alone.  Without yeast or any other agents of utility).

At 2am, I finally felt like I could go to sleep without fear of dying. My breath was controlled, my swelling minor, my migraine  only a seven on a scale of one to ten.  Hives were gone, and bloating is just a fact of life sometimes.  And I did wake up this morning.  Feeling like crap, but alive.

Halfway through the day, it came back.  I ate for the first time (Kix) and it was throat tightness, lightheadedness, bloating, itching.  So I called my mom, emailed my sister, and finally relented and called my doctor who said that this was all normal.

ALL NORMAL.  Let’s let that sink in.  The power of someone saying, “This happens.  You are not alone.  I have heard this before and can help you” is immense.  That’s why I’m letting this post get so long, by the way.  In case you’re googling xanthan gum and allergy and wondering if you are normal.  You are.  Seek medical attention because you deserve it and it’s ok.

My doctor told me to use my epipen.  I told him I was scared.  I was standing in the hallway of my gorgeous office space outside of a major production company’s office – in a hallway where days before, Bradley Cooper was roaming – I was standing whining and crying and clutching my throat saying I was too scared to use my epipen and “didn’t wanna.”  He told me to come to his office and he’d give me epi and steroids.  And it would be ok.  I asked what would happen if I ignored it.  He said I’d stay sick.  And that’s maybe a little bit silly but I’m entitled to make my own decision.  I told him I wanted to think about it (I am a genius sometimes), called my mom, who said I needed to go.

I want to take this opportunity to thank my boss who has let me leave work for allergic reactions more times than I bet he ever bargained for.

By the time I beat LA rush hour traffic (Thanks for teaching me how to drive, Brooklyn.  I totally New York Cityed Beverly Hills traffic today and I’m not apologizing. Oh, and Bruno Mars was driving next to me which is super baller), my throat tightness was subsiding.  The nurse injected steroids into my “just above the butt area” and it hurt but she talked me through it and we did breathing stuff. The doctor and I chatted, he examined my airways and determined I was totally swollen in my glands and sinuses and had an overproduction of mucus, but my airways were clear.

“So I’m good?!”

“No. You’re just breathing, but you’re all swollen.  You’re hypersensitive, and you will be for a few days.  But we learned something.  No xanthan gum.  At all.”

“Guar gum?”

“Same thing.  No.”

“Isn’t it hilarious that xanthan gum is that bacteria on the foods I can’t eat? I googled things, and it made sense.”

“It does make sense, and while xanthan gum isn’t a popular allergen so we don’t test for it, it is an allergen for some people, and you are fine with corn, and you learned something.”

And he told me to take benedryl every night for a few days in addition to my routine morning Zyrtec, and to call him if this happens again.  I asked if I needed my epipen last night.  He said probably just steroids, and that’s why I call.

So I skipped back to work (or fought traffic, whatever), and when the steroids kicked in…

MAN ALIVE!

It was like energy I never had before.  I totally get baseball players now.  I was energized after a day of eating a handful of kicks and a little bit of soda and having an allergic reaction.  Still haven’t stopped moving.  This is way better than the last steroid which made me an emotional mess that just yelled and cried and yelled and cried for two days.  No, I’m not advocating steroids.  They’re probably not good for you.  But I feel unswollen and so energized and I learned two really important lessons:

1. There’s nothing to fear from going to a doctor.

2. I’m allergic to xanthan gum.

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17 responses

  1. Oh no! Get your read on, Cindy Lou Who. I found xanthum gum in my shampoo this morning. Do you know if your reaction only happens when you eat it?

    • I imagine the severity level is only if I eat it, but I really have no idea. Something in shampoo or soap would probably be more of a local skin reaction. But I had no idea it could be used in shampoo, I should probably do my best to avoid that! Thanks for the tip 🙂

  2. Watch out, because there’s wheat in shampoo too. And I am NOT kidding.
    PS this is the first blog that I bothered to read all the way through. And I already knew this story.

    • My shampoo doesn’t have wheat, but it does have rice. But the doctor said I’d just get a local reaction if anything, and I’ve been fine. So that’s good. And thank you 🙂

  3. CINDY! i am glad you aren’t dead.
    you are hilarious.
    and please don’t ever not get medical attention when you can’t breathe or think straight again.

  4. Pingback: I Have An Airborne Allergy…And It’s Not To Peanuts | allergyepisodes

  5. Pingback: Vote for Breakaway Bakery, the best kosher dairy-free, peanut-free, gluten-free bakery in LA! | allergyepisodes

  6. Xanthan gum and guar gum arnt the same. The first comes from slimy black mold the other comes from a bean. I’m incredibly allergic to xanthan gum. I can’t even use skin care products or tooth paste with it or i start having an immediate reaction. But I have guar gum all the time with no problem at all. Just saying, so people don’t give up both if they don’t need to- you loose soooooo much food that way. Still- thank you for your article. Most people dont even know what xanthan gum is and while I wouldn’t wish this problem on anyone, it’s always comforting to know you’re not alone.

    • You’re right – guar gum is made from chickpeas and some sort of gummy substance. I happen to be allergic to chickpeas too at this point, so I have to stay away, but I think my doctor’s original concern was keeping me away from all things gummy until we figured it all out. Turns out, it’s two separate allergies. Still, I stay away from all gums because I just can’t be certain about the ingredients in them and it’s easier that way. But if you can eat guar gum, by all means do!

      And yes, it’s nice to know you’re not alone! Thank you for that comfort. It’s incredible how many products and food xanthan gum is in, and how little people know about it. I always wondered why I only liked liquid toothpaste and thought the others were “vile, disturbing, and awful to use.” It’s because I was having allergic reactions that I didn’t think were possible.

  7. Pingback: Benadryl, Epipen, and…Nicki Minaj? | allergyepisodes

  8. Food additives are evil and Xanthan Gum is at the top of that list. I am allergic to all gums and only recently figured out why I am sick so often and it’s due to Xanthan Gum being put in everything due to gluten allergy concerns.

  9. Hi Cindy,
    Just read your great blog. Thank you so much. I hope you’re doing ok. I think I may be allergic to xanthan gum, too. I’ve had several mysterious reactions to foods (tongue, lips and then body tingling, trouble breathing, etc.) and can’t figure it out. Each time it is worse. I’m on a Gluten-Free, Histamine Intolerance Diet for other problems. I was feeling ok, but then I Monday night I ate some cream cheese. The thing is is that I’ve eaten cream cheese before, but this time I had an EXTREME reaction. All of the above, plus tachycardia (fast heartbeat), uncontrollable shaking, freezing, headache and more. The previous times I went to the ER and they gave me Benadryl and just watched me and I seemed to recover. The first time it took 3 days; the second time 5 days. This time, I decided not to go to the ER because it has settled down with Benadryl and we have a $250 co-pay. This time I’m on the third day and my symptoms are still going strong, although it is a bit better. I looked back on the foods that I had eaten before a reaction (mainly gluten-free items) and, yes, xantham gum has been in all of them–even the cream cheese! I read that each time you get a reaction to xantham gum, it is stronger and this third time it slammed me extremely hard. So, your doctor said that it wouldn’t go away without treatment (Epi or steroids). I’m not sure if I should go to the ER again. If I stay in bed and don’t move, symptoms are better, but I can’t do this forever. I also haven’t eaten anything in two days because I’m afraid. I did go to the allergist after the other two episodes and we’re getting ready to do some testing on Monday, but I’m not sure what to do right now. Does anyone have any advice?

    • First of all, feel better!

      Second of all — it sounds to me (though I’m not a doctor) that you’re experiencing anaphylaxis. I would call your allergist immediately and see what he or she recommends. If you think you even might be experiencing anaphylaxis, whether or not you’re breathing at that moment, you should go to a hospital. Yes, it’s expensive, but to be perfectly frank, there’s not much you can do with the money if you die, and anaphylaxis is a life-threatening reaction. Since it’s day 3 (perfectly normal, by the way, to continue having the reaction days later), you can probably just consult your allergist this time — but he or she might have a remedy for you that is beyond Benedryl, or send you to an ER. So right now, find a medical professional, stat.

      As for the future — it’s hard to do gluten free without xanthan gum, but not impossible. It just means you will have to make most of your own foods from scratch and not rely on the packaged goods. It’s time consuming, but worth it. I have some recipes throughout the blog. Xanthan gum is used as a thickening agent — so you just need to thicken your baked goods differently, which can be done with corn or potato starch — or fluffed with extra eggs, extra applesauce, or bananas.

      Feel better!

  10. Thank you, Cindy, for your reply. I just saw it. I did go to the allergist and he’s going to follow up with me and test me for a variety of things, including xanthan gum. Right now, I’m just sticking to about 5 foods that I feel safe with. I’ve determined that I’m definitely having a histamine problem–either Histamine Intolerance or a Mast Cell Disorder.I react to other foods besides xanthan gum, but xanthan gum may have given me the major reaction. The allergist is also an immunologist and he’s testing me for many things. He’s a good, guy, and I appreciate that I’m finally getting some help. I appreciate your concern, Cindy. And, thanks for the tips. Oh by the way, if I ever have another major reaction and need to go to the ER, my allergist has given me a note to give to the ER doctor as to what to test for when I’m in an acute state. Hopefully, I won’t have another one, but if I do, the test results will tell a lot. The best of health to everyone.

  11. Had issues my WHOLE life. Just figured out this may very well be my problem! Over 40 and was about to give up. Makes me want to clear my cubboard’s and start over! Thank you for sharing your experience. Looking pregnant all the time is getting out as well.

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