What’s Living with Celiac Disease Like?

A field of golden wheat is a stark contrast to the bright blue sky behind it.

I have been gluten-free since 2008, which is almost 15 years at this point. Though I’ve never been formally diagnosed, my symptoms match the condition of celiac disease so well that it’s the easiest way to communicate my level of gluten-sensitivity to a stranger. But of course, my experiences living with celiac disease didn’t start when I cut out gluten. They started when I was a child with no idea what was making me sick.

CN: chronic illness, discussion of food, digestion issues (non-graphic), weight, and dieting.

When I was a kid, my parents were always bartering with me to try to get me to eat protein and veggies. They’d promise me a bit of dessert if I could manage x number bites of my deli meat. I was a very picky eater and rarely finished my plate. My mother would make me meals with five or six different types of food, trying to gauge what I was willing to eat.

I wasn’t allowed to eat dairy. I was told I was allergic, but on the rare occasion that I was allowed to have it, I didn’t notice much of a reaction. At school, I would regularly sneak bites of my friends’ pizza or milk chocolate. Looking back, I think that avoiding dairy helped cut back on the amount of mucus I produced when I got inevitably got a cold every 3-4 months.

A sickly child, I seemed to toughen up a bit in middle school, though I was still tiny and rail thin. My appetite improved and I began eating dairy a bit more often. In high school, I stopped avoiding dairy altogether, except for when I had important singing performances or if I was battling an infection. At the end of my junior year, I reached the heaviest weight I had ever been in my life— I was 5’ 2’’ and 115 lbs.

At the beginning of my senior year in high school, I began to feel nauseous on a regular basis. I found myself only eating about half of my breakfast, forcing myself to eat a small lunch, and perhaps managing a full meal for dinner. I ate less and less. I also had increased my activity level because I was taking my required PE course that year— volleyball, and I walked home from school most days. Over the course of just a few months, I lost 15 lbs, bringing me down to 100lbs; a drastic difference on my tiny frame. My pants began to slide off my hips because they no longer fit.

My appetite continued to be poor for the next year. Frequently, I wouldn’t eat a full meal for lunch and would only eat an energy bar. I also felt weak and tired pretty frequently and that became a normal state of being for me.

Trying to Be Gluten-Free

In 2008, my boyfriend informed me that he was going gluten-free. The entire family on his mother’s side had Celiac Disease, he said, and he had always been in denial that he might have it too. But he told me going gluten-free had given him much more energy, made his stomach feel better, and helped him lose weight.

Hearing about my ongoing digestive problems, he encouraged me to try it. I was daunted by the idea of eliminating something so common from my diet, particularly when I didn’t have easy access to a grocery store or a car. But I set a goal for myself: Each meal, I would try to come up with something to eat that didn’t have gluten. I didn’t have to worry about the next meal. I’d start with this one. One meal at a time, I started the habit.

A woman dips into a white bowl filled with a light brothy soup with small vegetables.

Within a few weeks, something really exciting happened. I began to feel hungry! I hadn’t realized how inconsistently I felt truly hungry until my hunger returned in full force. My nausea and gassiness decreased. I had more energy and later more strength.

But I also noticed after just a few months of eating gluten-free, if I slipped up and ate some gluten by accident, even a small amount, I felt sick right away. I had never noticed feeling this way when I was eating gluten on a regular basis. My boyfriend explained that when your body is always sick, it doesn’t have the resources to react very much to the thing that’s making it sick. But since I had taken the time to get myself healthy again, my body had the energy to sound the alarm when I put food into it that it didn’t want.

Perfecting My Diet

The more I experimented, the more my sensitivity to gluten seemed to increase. I started avoiding oats, which do not have gluten in them but are always harvested and processed alongside wheat unless specifically grown to be gluten-free. I started avoiding gluten-free flour that came from a bulk department, contaminated with the gluten flour that surrounded it. I started avoiding products that warned on the box that they were made in a facility with wheat.

But the longer I practiced my new strict diet, the healthier I got. After a solid six month of being gluten-free, I was blown away by how I felt fully hungry and needed a complete meal every five hours. I used to be able to go half the day without eating, and now my body notified me, loud and insistent that I needed food three times a day!

I also discovered that because I was so sensitive, most of the time the reaction I would have would no longer be feeling sick to my stomach, because I never allowed myself to eat a large enough quantity of gluten for it to get that far. Instead, I’d know I’d been exposed when I suddenly got an infection or came down with a cold. My immune system would be distracted by defending against the gluten, leaving my body vulnerable to any virus or bacteria that happened to be nearby.

A banner ad for Kella's Etsy shop demonstrating three chronic illness themed products: A turquoise tote bag with a sunflower and the words "This is the prime of my life. I am young, hot, and full of moderate to severe joint pain," a hoodie with "Yes thank you I have tried yoga please suggest literally anything else," and a canvas print of a watercolor style orchid over the words "Needing Extra Care Doesn't Make You a Burden."


Challenges of Living with Celiac Disease

Celiac Disease is considered an autoimmune disease, and while my reactions tend to be pretty minor, it’s still really challenging to live with. It makes combining social occasions and eating food really difficult because there tend to be very few restaurants that are safe for me to eat at, and going to someone else’s house for dinner means teaching them a lesson on food handling first and then supervising them closely.

Perhaps the most common challenge I run into is getting hungry when I’m away from my house and relying on public transportation to get around. I may not be able to go home to eat for another several hours, but grocery stores rarely stock gluten-free food that you can make a meal out of, at least not without buying a can opener too. It means that if I ever eat outside of my own house, I have to do a lot of planning and researching ahead of time, or plan my meals so that I don’t get hungry at inopportune times.

Whenever folks talk about “cheating” on their diets or being bad by eating something that makes them feel gross, I laugh. For me, to cheat on my diet is to eat something manufactured in a facility with wheat, or to get a gluten-free sandwich from a deli that I know is inconsistent with preventing contamination. Taking a risk is the same as cheating for me.

I’ve often said that if I could wave a magic wand, I would be fine with still needing to avoid gluten as long as I could eat at restaurants or parties without worrying about contamination. Just that change alone would instantly make my life much easier.

Three women spend time together, gathered around a table covered in food and bottles of wine.

It’s actually not so bad…

On the other hand, avoiding gluten isn’t nearly as difficult as most people think it might be. “You can’t eat anything!” people say, which really isn’t true. Unlike many folks with Celiac Disease, I’m still able to eat dairy, corn, and soy. Fruits, vegetables, meat, fish, nuts, rice, and beans are all options for me, though I do have to be a vigilant ingredient reader.

I think the thing that makes being gluten-free far easier than most people expect is that I feel happier and healthier when I’m not eating it. The in-the-moment reward of eating a gluten treat is not anywhere near worth the consequences to my health which can last for weeks. I much prefer avoiding gluten to avoiding dairy the way I did when I was a kid, partially because this diet restriction actually makes me feel significantly better, and partially because now I can eat all the ice cream I want!

Gluten-Free Baking and GlutenfreeNom.Com

Gluten-free products on the market have improved dramatically in just the last five years, though they are still very expensive. Being gluten-free means that most of my food is freshly made, which means my food tends to be better quality (although that necessity can sometimes intersect painfully with my disability when I don’t have the spoons to cook.)

But despite the extra resources it takes, becoming gluten-free helped me discover my love of cooking and baking. I even worked at several gluten-free bakeries before chronic pain made food service work too difficult for me, and I have retained the knowledge I learned there meaning I can make most of the foods that I crave myself. In order to preserve and share my knowledge, I’ve started a new blog, GlutenFreeNom.Com, which will include recipes, information about going gluten-free, reviews of products, and general guidelines on cooking and baking without gluten. I invite you to come follow my gluten-free cooking pursuits on my new blog!


About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. She specializes in educational writing about civil rights, disability, chronic illness, abuse, and Dissociative Identity Disorder. Her work has been published in Ms. Magazine blog, The BeZine, and Splain You a Thing and in 2022, she released a self-published book of poetry, “Pet: the Journey from Abuse to Recovery“. You can find her @KellaHannaWayne on Facebook, Instagram, Pinterest, Medium, and Twitter.

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