Celiac disease – two years later…

When I was first told I’d never be able to safely consume wheat, rye, or barley again – I felt a certain relief in knowing that years of weird symptoms had an explanation. That relief was brought to reality when I was getting a massage for back pain (which I no longer need to do). I was telling the masseuse about the new diagnosis of celiac disease and she said, “I had another client who got diagnosed. She said it was the worst thing that ever happened to her.”

I can see that.

Last week I was thinking about which finger, toe, or feature I would sacrifice in order to have gluten again. I decided I’d give up one or both pinkies, and then run to Panera for the largest bagel they have on the menu. I then dreamed of being able to eat at office Christmas parties, or at every friend’s house, or at every restaurant. I dreamed of a world where holidays dinner felt like a time of peace, instead of a time of stressing about cross contamination. Sure, I’d be down a pinky or two – but everything would be so much easier.

The thing is, two years later, I’m not miserable. My life is wonderful, and I would say I’m 95% certain how to handle this celiac thing. I figured out how to cook at home, which restaurants I can eat at, how to tell co-workers I can’t eat the food they made for me, and most importantly – how to advocate for myself. Explaining to strangers over and over again that your dietary restriction is a disease and not a fad or a choice gets exhausting. “Nope, I’m not doing this for paleo or Whole30. This is the rest of my life, and I will actually get sick if you have a shared fryer.”

My body is healthier. I’m not sleepy all the time. My back doesn’t hurt all the time. And I don’t have to run to the bathroom after every single meal. This autoimmune disorder is in check. This year we were very fortunate to go to Italy (land of gluten free everything – yes – really), and Disney World (also – land of GF options galore – really). When first diagnosed I was worried I would never step foot in another country or be able to travel to other states, but that has not been the case thanks to the internet.

There are two things I still find difficult about having a dietary restriction are: 1) listening to people complain about food I cannot eat, and 2) feeling left out.

I try not to feel angry about the women in the office who say, “I can’t eat that doughnut… I’ve been so bad.” Watching poor little defenseless donuts left to go stale because of guilt over eating gnaws at my soul. I think of the little donuts I left behind over the years. I’m sorry little donuts. If I had known, I would have eaten all of you.

I’m better at cooking and baking than I ever thought I would be. I know the properties of weird flours and can name nearly every other food allergy. I can read food labels like a boss, and know how to pronounce weird ingredients most don’t know exist. Also, my level of empathy for people with food restrictions is off the charts. “You can’t do eggs or soy – ok – can I make you this? Here are the food labels.”

I’m exceptionally grateful to have family and friends that understand celiac disease and support me. My husband, mother, mother-in-law, church small group, and many others go out of their way to include me. But I think the woman the masseuse mentioned who was miserable did something I have to try not to do. I’m guessing she started counting the times she was left out; the holidays make it really hard. A few months ago I noticed I had counted the times I was left out of team building activities that centered around food. It’s hard to feel like you’re a part of the team building, when the team gets food and you do not. “These treats are for all of your hard work! Oh Stephanie, I’m sorry….” One month I counted how many times I got left out, and when the number got to be over seven I stopped counting. Becoming bitter is a choice, and I don’t want to become that person.

I wish people tried harder to understand. I wish people I’d told 30 times I have celiac disease would stop offering me bread. But in the large scheme of life, this is a small issue. Life is unfair. But whatever. It’s unfair to us all. I do not have this one little thing, but in the scope of the world – I have nearly everything. I can be bitter about missing donuts, or I can drive to Meijer and buy some donuts of my own.

Two years later – I’m 95% of the way to full acceptance.

Next year – I hope I’ll be closer to 100%.

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