There’s a slightly-obscure Catholic New Years tradition where we are randomly assigned a saint to study/ emulate in the new year. I’ve received saints to study over the past few years at my New Years retreat, which is all fun and smiles. Last year (2012) my saint was St. Elmo.
I had never heard of him either. I remember asking the closest priest, “Who is he, the patron saint of children’s programming?”
When I got home I looked St. Elmo up on the internet and I remember calling my sister and laughing; St. Elmo is the patron saint of stomach ailments. Why was this a laughing matter? I had been complaining about severe stomach pain for weeks. I prayed a quick prayer to St. Elmo and scheduled a doctor’s appointment.
Many blood tests and an endo-gastroscopy later, it was determined I needed to begin eating gluten-free. A few months later the doctor and I decided I should avoid meat, too, but that’s a different story.
This is weird to write about. It’s probably weird to read about, too. You can stop reading, but I’m going to keep writing.
I’m writing because I’ve gone through stages of challenge with this adjustment, and I want to throw them out there, to the public. Maybe someone else will be diagnosed gluten-free this year as well, and they’ll need to know that someone else has been there, too. Maybe someone reading will know someone who is gluten-free and this will help them understand the process. Either way, this will be written.
Here are stages I have encountered. They overlap a little bit. Some I have made it through alive.
Stage 1-Reinventing the way I ate
The first challenge I had to face was the daily realization that I ate a bunch of gluten. “Gluten” is found in wheat, barley, rye, and some oats.
That means that bread, cake, cookies, pizza, pasta, sandwiches, buns, pretzels, cereal, flour tortillas, gravy, soy sauces, breaded meats, granola bars, muffins, doughnuts, pies, soups thickened with flour, crackers, pitas, waffles, pancakes, etc. were (as I had previously known them) now off the menu.
It’s kind of hard for me to remember, but before I went gluten free I think my daily menu looked something like this:
- PB&J sandwich or cereal for breakfast
- Sandwich or instant oatmeal for lunch
- Snack, usually graham crackers
- Pasta or sandwich for dinner
Fruits and veggies were thrown in here, too.
(I ate a lot of sandwiches. Don’t judge. Bread was my friend.)
All of this had to change. I can look at this now and think, “Oh, that’s not a big deal.” But that’s because I know how to navigate better, like that corn tortillas can be substituted for bread, or which places sell cheap gluten-free noodles, or that quinoa is DELICIOUS.
But, when I was starting out it was definitely hard to navigate. I would just need to tell myself, “It’s hard…but it’s not the end of the world.”
Oh, and that my painful symptoms started subsiding was a huge motivator. But, it was still tough in the beginning.
Stage 2- Realizing that my life was now something I never expected it to be
I reached a point where I could make it through a day on meals that consisted of more than my gluten-free Clif bars (shout out to the gluten-free Clif bars, though. Way to keep me nourished those first few weeks, guys).
But then I would get in these weird Twilight Zone-y situations where I could look back at the glutenous life I used to lead.
Like the time someone asked me for a restaurant recommendation and I started gushing about a particular menu item…then realized I would never eat it again. Or the time I decided to travel again, a life passion of mine, and I realized I don’t know how to travel and eat gluten-free. Or this past Christmas; I used to make hundreds of cookies for the family, but I didn’t this year, because all my old recipes are full of gluten.
Did I mention the weird feeling of knowing you used to love something but you’ll never eat it again? May I make a list? Hot dogs. Pepperoni pizza where the edges of the pepperoni are singed and crispy. All Italian food ever (small grace! Thanks be to God I went to Italy BEFORE I was diagnosed!). Polish egg-bread, braided with the golden raisins and the powdered sugar on top. Apple pie. I will miss you, old friends.
Anyway, what I’m saying is: it’s hard…but it’s not the end of the world. I’ve found other food that I can eat with happiness in my heart and stomach. It’s just…I’ll never eat those things again. That’s weird to think about.
Stage 3- Navigating with social grace
Probably I’m ending with this one because it’s the one where I still find myself. I will present you with two things.
The first is a “joke.” The joke goes like this (I’ve heard it with variations, too), “There are twenty people at a dinner party. One is a vegan (or gluten-intolerant or allergic to nuts or lactose-free). How do you tell which has the dietary restrictions?” *Wait for it.* “Don’t worry, they’ll tell you.”
OK, I get it. It’s (supposed to be) funny because we’ve probably all been in a situation where we’ve run into someone like this. Say you’re in line for a potluck, and the person in front of you turns to you and says (loud enough for the entire room to hear), “Oh, HOT DOGS. Oh no, that’s a no. I don’t eat meat,” and then, “I’m surprised people still eat these things, do you know how pigs are raised? Do you know that pigs are some of the smartest animals? And that they have individual personalities??”
And it’s tough because you just wanted to eat in peace but now you feel all guilty.
Second thing I want to present is this internet infographic: ————–>
Ouch. You know why it’s hard for me to look at that? It’s because I know. I know I’m hard to prepare for–I’ve lived through stage 1, remember? I know that this is incredibly inconvenient. I know gluten-free food can be more expensive. I know pizza is easier and cheaper. I know.
Because of this I find that it’s very hard for me to socially navigate situations.
Real-life, true-blue examples:
- I’m invited to speak at a youth group. They say I can stay for pizza afterwards. Conundrum: I want to stay and mingle because I believe this is important for the community. However, I don’t want the leaders to feel required to buy a specific gluten-free pizza only for me. I also don’t want them to feel like I’m an ungrateful wretch by not eating their food (don’t pretend there aren’t cultures that function like that)!
- I’m asked out by a young man. Conundrum: I don’t want to seem super high-maintenance to this guy but I also don’t want my intestines to explode if the date lasts longish. Both would thwart my long-term goal of eventually marrying someone.
- A friend’s family invites me to stay at the family’s house for the weekend. Conundrum: I don’t want to put anyone through the excessive inconvenience of figuring out what to make me. But I also don’t want to become a social recluse. These are people I love.
The list could go on and on. I feel like I’m walking the line of inconvenience whenever I’m confronted with a social situation: when friends want to go out to eat, when the extended family wants to get together, etc.
Yeah, I have friends that are like, “You’re worth it,” and that’s awesome…but, come on, you guys are my friends. Not everyone is like that. I don’t feel like I can use that in every situation.
At times when I hear “jokes” like the one above or see the graphic I just want to shake someone and yell, “I didn’t pick this! I didn’t pick this! I didn’t pick this!”
I still love food. I still smell fresh bread and want to taste it. I want to eat things and I want my stomach to believe them to be nutritious and I want to digest them without pain.
I didn’t pick this. But I accept it.
This is something tough, just like other people have other tough things. This is just my thing. I know this. I understand it.
I just don’t know how to hoist this inconvenience on other people.
Since I have no solution, I have no proper closing.
There are other essays to be written about being gluten-free, no doubt, and I’ll probably get to those one day…essays like “You’re going to make it” and “Things to serve your gluten-free friends at dinner parties.”
But, today is not that day. Today is this day.
I am Seashell Nell and gluten-free social navigation befuddles me.
The comments, friends, are open. If you have dietary restriction stories you must get off your chest: this is the place to do it.