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 you can help me with celiac disease…

A few months ago I was diagnosed with celiac disease.

To be honest, I don’t enjoy talking about it. I bring it up in my blog more than I do in person. I have a hard time asking for help, so talking about a medical issue in person feels like a lot.

In the last weeks, a few of my friends have asked me what they could do to be helpful.

On top of that, this week Ted Cruz announced that if elected president he would ensure all military meals were not gluten free. Ted Cruz is a family man, and I’m going to give him the benefit of the doubt and assume he made his comments out of ignorance and not malice. Nonetheless, to me, his comments showed that there is a serious need for more awareness on celiac disease.

In light of these events, I have spent a few days thinking about it. Here are four things you can do for me if you’d like to be help.

1) Read up on celiac disease. Short definition: celiac disease is an autoimmune disorder. If people with celiac disease eat gluten, their body attacks itself. You don’t have to take my word for it, you can read more:

This is a simple read on celiac disease

This is a quick read as well

And if you’re looking for entertaining, this blogger is fun

2) Understand

With celiac disease, 20 parts per million in what you consume is enough to cause a reaction.

This is what 20 PPM looks like:

 You notice how you can’t see it? I can’t always see it either, and that is the problem.

How do you get cross contamination?

If you’ve cooked with wheat in your kitchen, it could be on your spoons, pans, toaster, mixer, etc. I have had to throw out a lot cooking supplies.

If you have gluten free crackers, but then you place them next to something that isn’t gluten free – the gluten free crackers are now contaminated. For example, I was once at a party where there were gluten free cookies. However, they were placed on top of other cookies that were not gluten free. Because those two different cookies were touching, I could no longer eat them.

If I am coming to a party at your house, I do not expect you will provide food for me. However, if you want to have an option for me, please buy pre-packaged food and put it in a corner away from all of the other food.

3) Please don’t be offended if I don’t eat your food.

I am flattered that people want to bring me food. Thank you for thinking of me.

However, if you’ve just read that part on cross-contamination, you probably don’t have a kitchen equipped to cook for me. When I don’t eat your food, I am not trying to be rude – I’m trying to make sure I don’t get sick.

Instead of food you’ve made, I’d love gifts cards or pre-packaged food.

If you live around Jackson, there is only place I haven’t gotten sick: Qdoba. I love Qdoba.

If you aren’t sure what food to get, you can look for this little sticker. Or, I can eat just about any fruits or veggies.

 4) Pray for me.

I’ve been getting sick from gluten about once every other week. When I am sick, it causes problems for about three days. It is exhausting.

Please, just pray. Pray that I figure out what works. Pray that people learn more about the disease.

On gluten-free (or, all I want is a fluffy bagel)…

The worst part about having migraines, is waiting for the next one to strike. In high school I got frequent migraines until I figured out that the trigger was harsh smells. For the last few months, I was waiting for the worst part. Without smelling something that is usually a trigger (like Axe cologne or patchouli) I would get a terrible migraine. When I get a migraine, I see a halo, go blind in my right eye, and then proceed to have terrible pain in the front part of my brain for four to ten hours. After my migraine hits, I find a dark room and try to sleep it off.

I only have so many sick days from work, so I decided to see my doctor to get some help. In addition to doing some other testing and giving me some migraine medicine, my doctor told me, “I think you might have celiac disease. You should try cutting out gluten.” I love bread, so I wasn’t thrilled with this diagnosis. But when you’re live your life terrified of getting another migraine, you’ll try anything.

When you have celiac disease, your body attacks any gluten that you eat. Gluten is a protein that is found in wheat, rye and barely. When you have celiac disease and consume something like bread or beer, your body’s immune system attacks your small intestine. The only treatment is a gluten-free diet.

I’m in week two of not eating any gluten.

Week one, Del and I went to the store and just bought nuts, fruits and vegetables. “This isn’t a big deal,” I thought to myself.

Week two, reality started to sink in. I would describe the week as ‘pitiful.’ And the apex of pity struck during today’s trip to the grocery store.

This morning before church I went to the grocery store alone and was trying to find ‘fun’ foods I could eat. The moment I walked through the doors I was hit with a feeling I can only describe as self-pity. That feeling didn’t get any better as I wandered through the aisles. I would pick up a package, see if it said ‘gluten free’ and then would have to put it down when I saw ‘wheat.’

Cereal? Nope. Fluffy bagels? Nope. Pasta? Nope. ALL I WANT TO EAT IS A FLUFFY BAGEL.

When I recognized the self-pity hitting my brain, I immediately felt guilty. I’m not the first person in the world to have a restrictive diet. I know a few people that have celiac disease, and most of them have dealt with the restrictive diet for decades. I’m able to afford food, so I should feel grateful that I have food that I can eat. There are gazillion types of food in the world, and I am able to eat more foods than I cannot eat. Regardless of all of those things, I still felt weirdly sad. It didn’t help when I got to the check-out, and the guy in front of me bought a pack of delicious, fluffy bagels. He better eat ALL of them!

Leaving the store, I started whimper crying as I drove home. The mix of self-pity and guilt over feeling self-pity got the best of me. By the time I got home and started unpacking my groceries I was crying.

In spite of my self-pity/guilt, I drove to church. When I walked through the doors of the sanctuary I noticed tables full of communion elements (wine and bread) in the back.

Seeing the communion materials in the back made me feel strangely pissed off. If a person doesn’t take communion, I know they aren’t any less of a Jesus follower. But still, I really wanted to be able to partake in the ceremony with my church. The entire service I sat in dread waiting for that moment where my pastor says, “Now, go do communion folks!” I imagined that I’d have to sit at my chair and loathe in self-pity as the people I love got to enjoy one of my favorite church activities. I then thought of all of the other people I have known throughout my life that haven’t been able to partake in communion – but wanted to. My heart sank. How had I never thought of these people? Sorry people! I was a selfish jerk.

Thankfully, something wonderful happened. My pastor announced we were doing communion, and then he said, “And there’s a gluten free option at the back table.” My heart jumped. While other people were slowly meandering to the bread and wine, I was walking like a mad woman to the gluten free option.

I got to the table, saw the gluten free crackers and wine, and felt a strange sense of relief. I don’t remember gluten free options when I was growing up. I saw the cracker, dunked it in wine, and slowly ate it. In my entire life, I’ve never felt so grateful to be able to be a part of communion.

I haven’t had any gluten for two weeks. My body has never felt so good. I have a history of stomach problems, but haven’t had any issues since I began my new diet. Most importantly, I haven’t had any migraines for two weeks. Thanks you Jesus.

If you open your eyes to The Lord, you will see Him everywhere. I’ve seen Jesus in people, in nature, and in the kind acts of others. But today, I got to see Jesus in a gluten free cracker at the back of church. The body and blood of Jesus has never tasted so good.