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%.

On how to survive the holidays with a food restriction…

So, you have celiac disease. Welcome to the club. Or a nut allergy? Glad you’re here. Allergic to eggs? Fish? Wheat or soy? Well, I bet you fear the holidays as much as I do.

My name is Stephanie, and last year I was diagnosed with celiac disease. On top of that – I’m allergic to nearly every damn food on this green earth.

I was diagnosed October of 2015. The harsh reality of my food restriction didn’t hit me until I was eating Christmas dinner with my in-laws. While my in-laws were dishing up their food, I came to the harsh realization that I would never be able to enjoy another holiday the same way again.

When you don’t have any food restrictions, all you have to do for most holidays (or parties, or meals, or anything) is just show up. But when you might vomit/have diarrhea/go into shock from consuming the smallest quantity of some food item – you start viewing eating food with a group of people a little differently.

Last year, my holidays were sad because I didn’t know what to do. One year later, I’ve learned. I wanted to share what I’ve learned and recommend how you can prepare for the upcoming holiday feasts/potential reactions season. If you read this and have more tips/recommendations please leave them in the comments. I’d love to hear from you!

1) If this is your first holiday with a restriction – it’s ok to cry… for a minute.

My ham brought me to tears. It brought me to tears because in a house full of food, it was the only thing I could eat. If you find yourself in a similar situation, it’s ok to cry for a few minutes. But then (and sorry to be so harsh here) you have to pick your ass up and get over it. No amount of crying is going to feed you. So feel sad, and then go find yourself some amazing food that you can scarf down. Wine is one of my go-to consumables.

2) When you come to someone else’s house – don’t expect to be able to eat anything.

Last year I somehow thought I could just eat the stuff that didn’t contain gluten. But then, I saw my GF cookies nuzzling the gluten-filled cookies. I thought I could just eat the turkey, but then I saw someone graze a plate of turkey with the stuffing spoon. Within seconds all of my plans were destroyed. The worst part was, I didn’t come with a plan B. Honestly – what is fair for me to expect? There are 20+ people at this event. It is unfair and unreasonable for me to think everyone should shift their plans for me. It is my responsibility to make sure my food is safe. I think this has been one of the most difficult things for me to overcome, but it’s gotten better.

3) Bring your own food.

I went to a Thanksgiving party a few days ago with my close friends, and I brought all of my own food. Everyone at the party knows my limitations, so they weren’t freaked out when I was munching on my own numnums while they were scarfing down the food I couldn’t eat. When you can – just bring your own goodies. Cheese and crackers are relatively potable, so are Lara bars. And I mentioned wine, right?

4) Eat ahead of time.

Realistically, you can’t always bring your own food. You’ll either look like a cheapskate or seem crazy. When you can’t bring in your own food, eat ahead of time. And if you don’t want to feel bitter about watching strangers eat the food you can’t enjoy – eat something AMAZING. That way, you won’t feel sad about Timmy eating bonbons because you’ll have had some GF pizza, or nut-free donuts, or whatever.

5) If you can, cook at your own house.

By the grace of God, we are hosting Thanksgiving this year. I won’t have to bring all of my own food. I won’t have to starve. And the best part – I won’t have to worry about when I’ll get sick from cross contamination.

6) If you’re cooking for someone with an allergy – ask them about their preferences.

I trust about three people to cook for me; one is a chef and the other two are super GF. It isn’t personal, it’s just that I can’t afford to get sick. If you want to provide food for someone with an allergy, just shoot them a message and ask them their preferences. And if they say “Don’t do anything,” please don’t be offended.

Happy and safe holidays everyone.

Captain Jack knows what’s up.