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.

On the other side of grief…

I wrote this several months ago and was waiting to push it out until I was ready. It turns out, I was ready today.

Why do we feel grief?

No, I don’t mean the obvious answer of “Well, because there is a loss.”

I mean, why do we even feel loss in the first place? If change is all part of life, and change involves giving, receiving and loss – then why do we feel grief over a loss?

Being created in the garden, I’ve heard it said that we feel grief because we were never meant to know loss. We were created to live in a world that was meant to be perfect. If you’ve been around this world, you know we are far from that intent.

As a result, we have change. As a result, we have loss. As a result, we have grief.

But what is on the other side of that grief?

Last week, I woke up and could not stop crying. I told my husband I wasn’t going to work. For two days last week, I did not even work out. Working out is like – my thing. I hadn’t gone that long not working out for over six years. My husband was so concerned that he called his mother and my mother.

I was in depression, which is a stage of grief.

In the last few months, I have lost the ability to ever eat anything with gluten. During this transition I have:

  •  Given up 50% of the food I use to eat
  • Gotten rid of all my make-up (a lot of make is made with gluten)
  • Given away: our pots and pans, our waffle maker, our griddle, our cooking utensils, and over $100 worth of food
  • Lost the ability to safely take communion at church (although my husband makes up for it by doing communion with me later – he’s so good)
  • Stopped going out to eat – to nearly ever restaurant. Gluten free is NOT the same as celiac friendly
  • Learned how to tolerate the eye-rolls, jokes, and comments from people that don’t understand that this lifestyle is hardly a choice
  • Lost 10 pounds from being too terrified to eat, or from getting sick of accidentally eating gluten (and if you’ve seen me, I don’t need to lose weight)

Yes, I am grateful to be healthy.

Yes, at least I don’t have to take medicine (but really, how crappy is it to compare my illness to a worse one. What does that do to the person with the ‘worse’ illness?).

Regardless of any positives, I have lost my way of life. Ignoring that loss will not reduce the pain.

The way things were will never be the same again. I cannot go back. I can only move forward.

Grief does not last forever. In the words of my husband, “I love you babe, but you gotta get the hell over it.” This depression came. I let it sit for a while. Then I picked myself up off the floor, and moved on. Because that is what you have to choose to do.

Fortunately, something beautiful lives on the other side of grief.

Last week, Del and I went to Kroger and were able to buy new food for me. Instead of spending money going out to eat, we’re going to spend it on trying new food.

I have new make-up, which is a lot more expensive. But I no longer get physically ill from my cheap-o lip gloss. And holy cats people, expensive make-up is really nice.

I am aware of my body more than I ever thought possible. I use to ignore my pain, thinking it was normal. Now, when I am in pain, I stop and take care of myself. My body is happier with me.

On the other side of grief lies acceptance. And as we go through each stage of grief, we come out closer to the garden. For on the other side of acceptance lies one of the most beautiful thing of all… redemption.

Redemption for our pain. Redemption for our loss. Redemption for our grief. It’s going to take a lot of to get there, but it’s worth it.

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.

To my husband on Valentine’s Day…

When you say your marriage vows, there are a few things you promise:

For better or for worse

For richer or for poorer

In sickness and in health

I always imagined the last one was for when you or your spouse got cancer, right? You or your spouse gets really ill some disease when you’re in your sixties, and the healthy spouse takes care of the one with cancer or whatever.

The love of my husband helped me learn (again) that I was wrong about that assumption.

I have mentioned this before, but my family is very independent. Growing up, I cannot recall calling many neighbors, family or paid professionals for help. If the water heater was broken, we fixed it. If the roof needed to be redone, we did it ourselves.

While that has lead me to be very good at taking care of myself, it has also lead to me not calling out for help when I should.

The last year has felt like one big cluster fuck of sickness. A few months of depression and anxiety. A few months of neck and back issues. And now – celiac disease, which is for the rest of our lives.

In the last two weeks, I’ve gotten sick twice from accidentally eating gluten. Two weeks ago I accidentally had almonds processed with wheat, and it took me down for two days. Then, today, I ate something with a small bit of gluten and I got a migraine.

When I get sick, the first thing I want to do is run away from everyone. I want to curl up in my bed and make sure I am not a burden.

But marriage vows don’t work like that. My husband doesn’t work like that.

Sometimes I feel ridiculous for having so many health issues. Through it all, Del has been there. When I was sick two weeks ago, I laid in bed while Del camped out next to me. When I got sick today, Del stayed next to me until I woke up.

Without Del, I’m sure that my family and friends would have helped me through being ill. But honestly, having a husband who takes care of me when I’m sick has been one of the best blessings of my life.

When I was a little girl, I use to think that being married meant you just got to be happy all the time.

Now that I’m older, I think marriage is really about echoing the love of Christ into your marriage in all that you do.

If I were sick and Christ lived on earth, what would He do? Well, hopefully He’d just heal me. But short of that, I think He would do exactly what my husband is doing. He would let me rest until I got better, but while I am down He would never leave my side.

Don’t get me wrong, taking care of a sick spouse is not easy. Some days Del is tired, and some days he is frustrated. But more than anything, he is kind and patient.

For some people, Valentine’s Day is about chocolate and roses. I don’t think there is anything wrong with those gifts. I mean, who doesn’t love chocolate?

But this year, our Valentine’s Day was my husband showing me that he lives out our marriage vows every single day. I’ll take that over chocolate and roses any day of the year.

 

On a perfect mess…

Three weeks ago I was laying on my kitchen floor crying.

What brought me to the floor? A fucking bouillon cube.

A few months ago I was diagnosed with celiac disease, which means that if I eat anything with gluten (something found in wheat, rye or barley) I get really sick.

I had planned on making a delicious soup for my husband and my mom. But when I reached for the bouillon, I started reading the ingredients and could not figure out if it contained any gluten. So I went to the company website, and there was no more information. I scanned the barcode on an app I have, and the app database couldn’t tell me if there was gluten.

I was tired of searching. My plans hit a road bump. I was exhausted because I had to start a new routine of reading EVERY single label. My brain was confused. Not knowing what to do, I laid on the ground and started sobbing.

Like most people, I have a few pet peeves. My biggest pet peeve is misinformation (that’s a different blog post). But near the top of my list is when people deny having any problems.

I have a really good life. Good job. Good husband. Good friends.

But some days, I feel like I’m falling apart. Honestly, some weeks I feel like I’m falling apart.

But if you listen to some people (you know who I’m talking about) you’d think they had everything figured out. I’m sure there are a few people in the world who live in harmony, but for most of us – life can be a struggle. Struggles are relative. To many, me crying over bouillon cubes is ridiculous. But to me, it was difficult.

When I feel like everything is a mess, I find that there are a few things I can do.

1) I recognize that there is a problem.

Some people never admit to having any personal problems. Some people never discuss their own issues, but excel and discussing the problems of other people. I find those traits exceptionally harmful, because every person has some issues. Denying that we have issues is just that – denial.

In my experience, the best thing to do when I have a problem, is to sit down and think about it. “Why am I mad?” Oh yes, because of this. “Why am I crying?” Oh yes, because of this.

There is nothing wrong with having issues. God recognized sin the first day it happened. He wasn’t happy, but He sent us Jesus. Jesus gives us hope that we are better than our imperfections.

2) I call out for help.

I sat and cried on the floor for three minutes. Then I looked into the other room and my mom and husband were waiting there. Why should I be alone when two people I love are sitting in the next room?

If you can cry out for help – you should. If you don’t have anyone for whom to cry out – you should start looking. If you pick a time and public place, most people don’t turn down hanging out.

I’m not great at calling out for help, but I’m trying. Each year, I get a little bit better.

3)      I recognize that only God is perfect.

I swear a lot. I have a temper. I cry over trivial things. I blame my husband for my own mistakes.

I am not perfect. The trick isn’t to be perfect, the goal is to become better.

The only way we become better is through Christ. Christ died for our own imperfections so that one day we could be reconciled into perfection. Until that day comes, we all just have to live with being a perfect little mess.

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.