FAQ: “So…what happens to you when you eat gluten?”

6 Dec

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One of the most frequently asked questions has got to be “What happens to you when you eat gluten?” This is a pretty reasonable question considering how serious and dire I sound when talking about being GF.  When I order, I double and sometimes triple check that the server understands my needs, I always bring a side dish to dinner parties just in case and many of my friends have seen the blood drain from my cheeks when I suspect I have just been cross-contaminated.  So what is all the fuss about? I mean, what happens to a Celiac who eats gluten?

For years I have given a textbook-perfect answer to this question. You know, the whole “the lining of my small intestines flattens and I can no longer absorb nutrients” speech. I do this partially because it makes it less personal but mostly because I have not had a significant amount of gluten sneak into my diet since becoming gluten free. I know what it was like before being gluten free.  I know how to describe what living with untreated Celiac Disease is like but I did not know what would happen to me if I, say…decided to eat a bowl of spaghetti out of the blue.

In short, I really didn’t know what would happen if I ate a significant amount of gluten, as opposed to the trace amounts I have been exposed to since my diagnosis.  

Unfortunately, I am now able to answer this question with more accuracy and detail than I’d like.  The memory of this Thanksgiving break is still very fresh in my mind. If you are wondering what happens to a highly compliant Celiac after eating a bowl of gluten, you are about to find out.

On Wednesday, November 21, I boarded a flight heading from Washington DC, my new home, to Los Angeles, California.  I had a plan: I wasn’t going to eat breakfast so that I could save room for my favorite food in Los Angeles: GF Spaghetti from Rosti in Encino.  The second I got off the plane I sent a text-message to my dad that read: “Landed! Can we go to Rosti????”

Once I got to the restaurant I ordered GF Spaghetti with Pink Sauce.  When the server brought me the bowl I noticed that the pasta looked different from the last time I was there, about three months ago. Rosti is pretty good about being gluten free. They know all about using fresh water to cook the pasta and designated-gluten free utensils to serve the dishes.  I was pretty confident in their GF protocol but, as an ever-vigiliant Celiac, I decided to double check anyways. I told the waiter that the pasta looked different to me and said “Are you sure this is the GF spaghetti?” He confirmed that it was and I dug in!

After the meal my stomach kind of hurt, nothing major.  As I got to the car, it started to really hurt. I pulled my mom aside and told her that my stomach was hurting and felt kind of crampy.  We decided that I probably upset my stomach by eating so and so much fast after not eating for almost 10 hours (what can I say? I’m Italian and I love my spaghetti!).

On Thanksgiving morning I sang at a tri-lingual Catholic mass with my family.  Halfway through the service I started to feel really woozy, then hot and then really nauseas.  My vision started to blur and black around the edges of my eyes.  I stumbled out of the church to get some air. I made sure I got some water since I thought I must be very dehydrated.

In the evening, while eating my turkey and mashed potatoes, I felt a weird pain in my chest. You know that sharp pain you get when you swallow wrong and it feels like you have gulped air?  I had a persistent pain at the top of my ribs between my chest and my back.  I thought I must have swallowed wrong and that the pain would go away.  When I got home, the exhaustion finally hit me and I collapsed into my bed.  I woke up at around 2:00am because of extreme nausea.  I got up and drank some water, once again, chalking my discomfort up to dehydration.  I woke up again at 4:00am nauseas again but this time frothing at the mouth (gross, I’m sorry but I got to keep it real).  I drank more water and went back to sleep.

The next day that weird pain in my chest had gotten even worse. I couldn’t eat, drink or breathe deeply without writhing in pain.  I had no idea what was wrong with me and had to make a tough decision: spend time with my family or spend the rest of my Thanksgiving holiday at the ER.  I decided to stay with my family. I figured that if something was really wrong with me I would have passed out by now.  At this point, I still do not know what is wrong with me. I definitely was not suspecting gluten.  I had never felt this way before!

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The only thing I wanted to do was get more spaghetti since I was leaving LA the next day. When we went back to Rosti the spaghetti that was put in front of me looked suspiciously different from the bowl I had eaten on Wednesday.  This is the moment when my mother and I started putting all the pieces together.  It wasn’t until the next day that I got my final clue and confirming evidence.

Three days after that first bowl of spaghetti at Rosti a blister, my final clue, appeared on my forearm.  It was the one symptom I could recognize as being from Celiac Disease.  The next thing I did was call Rosti to confirm my suspicions.  When I called I explained the situation which culminated in asking them “Do you have two brands of GF spaghetti?” The answer was no.  I had eaten an entire bowl of straight-up gluten.  I hate having to share this story about my favorite GF restaurant. They are the only place i have found that has GF spaghetti and I am definitely going back even though they really hurt me.

In the future, when people ask what happens to me when I eat gluten, I think I will stick with the short and sweet textbook answer.  The physical consequences I experienced after eating gluten were pretty terrifying and painful! The experience reminded me why I created this blog.  Living with Celiacs is so much more than just following a diet.  The stakes are really high.

When I don’t get contaminated for a while I sometimes lose focus, especially about the purpose of CC Gluten Freed. Sometimes I doubt myself and wonder why I thought it was necessary to start a blog that focuses on helping people comply with the gluten free diet. What’s a little gluten here and there?  It is at these moments that I slip up and wind up hurting myself. After truly finding out what happens to me when I eat gluten, I am even more committed to my charge: help the gluten free community stay happy and healthy by writing about how to deal with the inevitable social aspects of being gluten free.

The take away from my experience? 9 times out of 10 you will be the expert of gluten while dining at a restaurant. It does not matter if the chef went to the best Culinary school in the word or if your waiter’s cousin has Celiacs. You will be the expert and, consequently, you need to act that way. I had a gut feeling that something was wrong with the spaghetti.  I should have sent the waiter back to actually show the chef the pasta dish instead of just taking his word for it.

It has been a week since the glutening and I am still not fully well. I have been experiencing really extreme fatigue but my spirits are high and I know things will get better very soon! You can expect a How-To GF Holiday guide in the next week.  We have go to stick together during the Holidays, readers!  I will have some words of advice  on how to tweak traditions to make them gluten free and how to deal with Holiday dinner parties.

 

 

 

Happy December!

 

-CC

2 Responses to “FAQ: “So…what happens to you when you eat gluten?””

  1. Melissa December 10, 2012 at 8:22 am #

    I seriously think that you should sue the restaurant. I get that this place is your favorite but if Celiacs do not stand up for themselves when they are contaminated, or in your case, blatantly lied to, we will keep getting sick. People don’t realize how serious it is and kitchens need to be trained better. I talked to a waitress friend of mine who I’ve educated about being gluten free. She told me that a plate that was going to be served to a customer who was gluten free had friend veggies on top and soy sauce mixed it. She asked the chef if it was gluten free because she suspected it was not from what I’ve told her. The chef said yes it was! So they just picked off the fried parts and served the same dish. Restaurants need to become aware of how dangerous their ignorance is and a law suit will make that happen.

Trackbacks/Pingbacks

  1. Flying Gluten Free: an experience of note « Cc Gluten Freed - February 14, 2013

    [...] The last time I didn’t speak up for myself I ended up eating a bowl of spaghetti (gluten spaghetti…. As someone who proudly wears a CC Gluten Freed bracelet stating “OWN IT” on the back, I reminded myself who I am and what my charge is: make this world more gluten free friendly. I knew I needed to say something. Not wanting to be overly confrontational (a common problem for an advocate) I added in a “ma’am” to show respect. [...]

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