24 Jun

It happens to the best of us: we get glutened.  In my four years as a diagnosed Celiac I have been glutened by cross-contamination via oil, cutting boards and pasta water, by oats (hiding in a chili recipe) and by barley (in a rice dish)  but never by straight up wheat or “wheat-gluten.”   Though I don’t know if it is because of smarts of obsessiveness,  I have been fairly successful at avoiding gluten ever since my diagnosis. Today was an exception.

I went to a dinner reception where the host was serving a BBQ buffet.  I was very careful about cross-contamination and very verbal about my needs.  I pulled a plate from the bottom of the stack (which was located next to a huge plate of cornbread) and used a fork to grab the “gluten free option” from its pan, despite the objections from the server.  Where did I go wrong?  Well, I didn’t.  The buffet staff told me explicitly that the GF option was the veggie burger, string beans and coleslaw, so that is what I put on my plate.

A few minutes after biting into my veggie burger (bunless), my throat started to feel, for lack of a better word, “ouchie.”  I don’t have a gluten allergy e.g. anaphylactic response to gluten, so I knew my throat wasn’t closing.  Nonetheless, it was hurting, there was a burning sensation.  I got up and double checked with the buffet staff that the burger was GF, they confirmed but I asked to see the ingredient list anyways.  The second ingredient on the list?  “Wheat Gluten.”

This experience was uniquely bad for two reasons:

1. Ingredients are listed in order of relative quantity e.g. if a recipe has just a hint of cinnamon in it, cinnamon will be one of the last ingredients listed.  This means I consumed a pretty substantial amount of gluten.  Additionally, this exposure was to “wheat gluten” one of the worst thing you can make a Celiac eat.  Wheat gluten is wheat that is stripped of the bran and the starch, leaving just the gluten protein.  Its consumption results in an incredibly pure and potent dosing.

2.  Normally, if someone glutens me, I chalk it up to the lack of awareness about Celiac Disease and its complex components e.g. weird ingredients and dangerous kitchen practices.  If I say “I am allergic to gluten” and someone thinks that “malt flavoring” isn’t glutinous,  I consider it an understandable  mistake for someone completely unfamiliar with the issue of gluten.  If I say “I am allergic to gluten” and the ingredient list literally has the word “GLUTEN” in it,  then it is a completely unreasonable mistake!

What I regret most about what has happened tonight is actually my reaction to the experience.  For the past few weeks I have been focused on and working on how I manage complicated Celiac situations. Tonight I realized that I have a long way to go.  When I realized I had eaten wheat, my eyes immediately filled with tears.  I did tell the waitstaff immediately so that they would stop serving the GF kids wheat burgers but after that, I fell to pieces.  Instead of staying at the party and seeing how I felt, I immediately called my brother and asked him to pick me up.  I left without saying goodbye to anyone.

In the future, I want to try and stick it out.  I felt so much anxiety after I left the dinner reception because I felt like I had been severely victimized.  Not only was I anticipating pain and illness but I was isolated from my peers, separated from normalcy, forced to confront the fact that I am different.

I am sitting here, frustrated, because I let Celiacs get me down.  I am sitting here, struggling, because I can’t focus very well on writing this post due to the fuzzy-brain-effect that gluten has on me.  Regardless of the fuzziness, I wanted to write this before I forgot how I am feeling tonight. When I am gltuened, I feel like the world stops.  It reminds me of how a politician must feel after just hearing she has lost the election.  You put in constant work, make sacrifices and, sometimes, go hungry, all for the sake of remaining gluten free.  Despite the work and effort, you don’t always win.  I imagine that a politician would want to be left alone after the news, to go into her room and just process.  This is how I felt tonight.  I let those feelings dictate my reaction and I left a celebratory party as a result. After I got home from the party, I realized that I felt pretty ok.  Certainly not great, but I felt well enough to be mildly social. If I had just remained calm and stayed at the party my experience would not have been so negative!

When you are glutened, take action.  Alert the restaurant, confide in your friends and family, stay calm and do not let yourself be a victim.  People face and overcome obstacles every single day.  I did not need to retreat today.  Next time, I won’t.


7 Responses to “Glutened.”

  1. eileen June 24, 2012 at 1:22 pm #

    Excellent post and very helpful – not only to those with celiac disease. It embodies the philosophy you proudly wear on your wrist band: Own It.

  2. Sherry June 25, 2012 at 5:56 pm #

    You said everything I have felt in the past year since my dx of Celiac. The frustration of trying so hard and still being contaminated is unreal. I just got over a breakout of mouth ulcers. Try and try as I might I cant think of what happened until I remembered I got a different brand of toothpaste because I couldnt find my regular safe toothpaste!! Stuff so simple but need to be so very careful. Nothing wrong in feeling this way. People dont know how much we suffer when we are contaminated. I also point out to stores when they have gluten food mislabeled as gluten free. Keep up the good work!! And thank you for your post!

    • CC Gluten Freed June 28, 2012 at 11:22 am #

      I totally agree with you. Thanks for commenting! It is great to know that other GF people feel the same way.

    • Roger July 13, 2012 at 12:28 pm #

      The book has a lot of good info in it as to how to cook and live gluten free. However the book does not mark in the reeicps which items you need to make sure are gluten free (it notes early in the book that there are some items that you will need to make sure are gluten free, the other GF cooling books i have bought and used have marked every item in the ingredients list. It is a good starting point, and the BBQ meat loaf (page 210 if i recall correctly) is AMAZING, but the other reeicps in the book i have tried so far have been pretty bland, maybe i just so far have chosen the wrong ones but compared to the other GF cook books ive used this has a much lower percentage of great reeicps -matt

  3. TheQuirkyGlutenFreeRunner/Amy June 27, 2012 at 8:31 pm #

    I’m sorry this happened to you. I have friends who try to get me to eat vegan burgers. One day I looked at all the varieties at the grocery store and they all had wheat in them. I can’t eat them, can’t even try them. Those friends don’t understand.

    Slip ups happen to us all at one point or another. No worries on “letting down the celiac community”–YOU didn’t. That the labeling must have been misread is what happened and that led to letting YOU down by the chef/organizer!

    • CC Gluten Freed June 28, 2012 at 11:22 am #

      thank you so much 🙂

      I try to avoid slip ups but you can’t always control it! I just wish it didn’t happen two days before starting me new job. eek!


  4. Chong Birckett February 10, 2013 at 3:35 am #

    Anaphylaxis is a serious type of allergy that usually happens when a person takes a triggering substance that is often called allergen. The exposure and its resulting reaction, anaphylaxis, occurs when the person become sensitized to that substance.Sometimes even if the person is exposed to allergens, even how little the allergens are and the time of exposure, the resulting allergy can really be serious and life-threatening.Anaphylaxis attacks can happen after the substance is inhaled, injected or ingested. Physical or skin contact to the substance can sometimes also lead to anaphylaxis attacks.`

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