Maureen Gets “Glutened” on Vacation

A Celiac & A Gluten Sensitive Traveler Both Get “Glutened”:
A few weeks ago three friends and I traveled to Florida for a long weekend. I was very nervous about being gone for four days and having to stay gluten and milk free.  I have Celiac Disease and Milk Allergy, one friend has Gluten Sensitivity (GS) and Milk Sensitivity, one used to eat GF and one is being checked yearly for Celiac Disease; but she has been negative to date and chooses to eat gluten until the doctor tells her that she has Celiac Disease. I definitely understand that choice.

The first night we decided on Thai Food.  My GS friend did a great job placing the order, no milk, no gluten, no eggs.  I was a little anxious but was confident with my order of just plain steamed rice and plain steamed veggies.  After picking up the meal,  we stopped at the grocery store and found me a gluten and milk free sauce to use with my bland veggies and rice; it was a real treat.  My GS friend ate regular Thai Food with regular Soy Sauce on it and told me her stomach was off the next day; but I was thrilled because I was just fine!

I brought a stash of my gluten and milk free protein drinks along with me for breakfast, so I was all set. We stopped to see some old friends in Palm Harbor and I was able to enjoy steamed shrimp with no problem!  We proceeded to a resort in Tampa and we had our own kitchen; so we went shopping and bought food for us to have at the resort. I was able to find many familiar GF items at the local Publix. My friends ordered a pizza and my GS friend made GF & Milk Free pasta and sauce for both of us to enjoy for dinner that evening.  All was well in my world.

The next day we headed to Harbor Island and chose a place overlooking the water for an appetizer. There was no GF Menu and the safest choice for me was the plain Avocado Rolls with no soy sauce. The rest of the gang ordered their regular appetizers. It was on that balcony, overlooking the water, that it really hit home how hard it is to eat out being a Celiac compared to someone who is just GS.  I watched my GS friend enjoy grilled wings and share the fresh made potato chips and other appetizers with my other two friends.  I knew I could never do that and for just one second, I felt a tinge of envy and somehow felt very alone even though I was with three other people. However, my mini pity party did not last long, I remembered the other side of the coin; what would happen to me if I ate what they were eating, and I was back to my old self again.  I felt fine and we headed back to the resort.

Since we ate the appetizers late in the afternoon, we decided to watch the sunset from our balcony and have our own appetizers for our dinner. We had bought familiar items at the Publix, GF crackers and guacamole as well as my GF, sulfite & nitrate free organic red wine, etc. Then, without thinking I dipped my GF cracker right into the guacamole and ate it.  It suddenly occurred to me that the others were also eating wheat crackers and block cheeses.  I asked if anyone had dipped a wheat cracker into the guacamole and one friend said she had.  Immediately, I panicked and she apologized.  I told her that it was not her fault, I should have asked before I put my GF cracker in the guacamole dip and before I put it in my mouth.  They all seemed shocked when I said that just dipping my GF cracker into that dip after a wheat cracker was in it could actually make me sick.

We continued to enjoy our evening and watch movies and have lots of laughs.  By about 11:00 that night I started to feel funny and the old familiar chain of symptoms began to unfold. By 11:30 I had a migraine headache starting, severe acid reflux and nausea and as I laid down to sleep my heart was racing. I slept with my head up on two pillows.  In the morning, two friends were scrambling to get to the airport so they could land in New England before the storm hit that evening. I walked out of the bedroom and they said “you look terrible”.  Well, I felt terrible and my joints were aching and I had sharp pains in my stomach.  As they rushed off to the airport, I made good use of the two bathrooms!  Then I became lightheaded and was so tired, it was all I could do to keep my head up.

When my GS friend returned from the airport, I told her I had been “glutened”. This is the time when Celiacs tend to hear the unintentional but invalidating words. Such as “the water can make you sick”  (as if we were in Mexico).  My one friend, via text, asked if it was the wine.  I said, “No”, a Celiac knows when they are “glutened”, it is not a hangover and nothing like getting bad water in Mexico!  It is a very specific set of symptoms that begin to unfold.

We proceeded to the airport and decided on an Italian place for lunch while we waited for our flight.  The waiter was quite knowledgeable about GF and I explained that I have Celiac Disease and that it is NOT a fad for me. When we inquired about milk and dairy, he informed us that the salad dressings all had milk in them, so we opted for balsamic vinegar and oil. I asked for the chicken to be grilled on a piece of foil with no sauce. My GS friend told the waiter that she was “just like me”.  Our salads came out to us with blue cheese on them, so they were sent back.  As we were waiting for our salads, the fatigue was overwhelming and the pains on the right side of my stomach increased. My friend enjoyed fresh potato chips. I could not do that, they were cooked in a fryer with gluten in it.  I was facing the open kitchen and watched the servers; who were watching us.  (this type of thing is what makes servers & restaurants not take Celiacs seriously).  I was nervous about eating, but I dined safely on my salad, thanks to a waiter and kitchen staff who were educated.

On the flight home, I reflected on what my friend had said in the restaurant…”I am just like her” and I thought to myself , “No, we are not alike”.  In fact, “one of us is not like the other”.  I have Celiac Disease and I cannot eat fresh chips fried in oil that also fries items with gluten.  I can’t eat regular soy sauce on my food and I can’t share appetizers or dips with everyone else.  We are not alike. When it comes to gluten, my friend avoids gluten based pastas and breads, but she does not always scrutinize everything she puts in her mouth as a Celiac must do; because she does not experience debilitating symptoms after ingesting gluten.

By Monday evening, I could not get off the couch, I just slept.  I made it to work on Tuesday but had to come home. Tuesday afternoon was spent between the couch and the bathroom; experiencing vertigo, my stomach was distended and hard as a rock.  On Wednesday, the vertigo was still there and the stomach was still distended.  The migraine was much less severe but the intermittent burning and stabbing pain in my intestines was still there along with frequent trips to the bathroom.  As I lay there in my misery, I continually replayed in my mind everything that I put in my mouth, was it the avocado roll or the shared guacamole dip?  I replayed it all over and over, trying to figure out exactly when I got “glutened”.  Unfortunately, all I can do is accept responsibility, because ultimately the responsibility lies with me; I am an adult.  So, I forgave myself and know that in a day or so, this will be over.

My husband has been working my shifts for me because I got “glutened” and by the time I recover he will have gone 10 days without a day off, working 12 hour shifts.  He sees the repercussions of me getting accidental gluten and he knows how sick I am and knows it has to work it’s course. I am so grateful for his love, support and understanding. Twelve days; later I have a DH rash on my scalp and mouth ulcers. Time will heal them.

I am so glad that I went because I have missed every event for the past four years. It was so great to spend time with my friends. Was it worth being “glutened”?

This experience made me realize that what we do at One Dish Cuisine is so special, we are a safe haven and allow folks to come in and eat without getting sick.  I also came to realize that there is a great need for what we do; in every state in the country!  If there were more places to eat like One Dish Cuisine, I and others could travel safely and eat freely.  Sometimes, I take for granted what we do here, because I can safely eat, in my own restaurant, every single day.  This was a huge wake up call for me.  The silver lining is clear to me in this experience because it has further inspired me to keep doing everything I can to open more safe places for those with Celiac Disease and Food Allergies.

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