Meet Cassandra Simone, the woman pushing the boundaries of gluten-free food

By Autumn Sevy

If you stroll through the aisles of a grocery store and stumble into the health foods section, you’ll most likely come across breads or pastas labeled “gluten-free.” If you look even closer in the aisles of stores like Trader Joe’s, you can even go as far as finding gluten-free muffins, granola and a plethora of snack foods.

It has been reported that about 3 million Americans are affected by celiac disease — 60% to 70% of those 3 million are women.

Being gluten-free means an individual must fully exclude foods containing gluten, like wheat, from their diet. For individuals with certain health conditions like celiac disease, consuming a diet free of gluten is vital for maintaining their body’s normal function.

It’s important to remember that being gluten-free is not a fad and it’s not just an eating plan. For many women, eliminating gluten from their lifestyles is the solution to dealing with a life-long condition like celiac disease or gluten ataxia.

With every choice made for health there comes a level of sacrifice, and for many women of color, becoming gluten-free has conventionally meant giving up cultural foods.

Cassandra Simone, known as @glutenfreeblackgirl on Instagram, is a part-time food blogger with a growing social media following. She shares her love of food and community through her photos and has been influential in paving the way for Black women and nonbinary people of color to rediscover a love of food after becoming gluten-free.

Can you tell me a little bit about you?

Cassandra Simone: I work full time in the marketing department at a university, so I don’t consider myself even a part-time blogger. It’s just a hobby that was just comforting for me and it’s turned into something I couldn’t expect.

I live in Atlanta and this whole pandemic has been kind of a strange process for me, but I’ve been able to really spend some time in my kitchen this past year and just cook. I’m excited about how things are going with my blog and I hope to have a cookbook in the future and do more things with Gluten Free Black Girl. But right now, it’s just a really in-the-moment side project that’s been my outlet. My background is in writing and producing so I use a lot of those skills to create the content that I make.

How did you start your gluten-free journey?

CS: I went gluten-free when I was still in college, this was in 2015. I started having really bad chronic pain and as a child I had been sick for a really long time. I was probably since I was seven, and doctors could never really figure out what exactly it was.

It’s always been difficult throughout this journey to get a diagnosis or recieve any kind of information about what was going on with my body.

I think it’s really important for me to say this and this is kind of the premise of my blog. I’m not officially diagnosed and I think that does connect with the racial disparity in the health care community.

So for me, around the time that I was in college, it started to worsen. I had to sit down and tell myself, I’m not gonna graduate if I’m not making it to my classes.

I kept a food diary and really started narrowing down what kinds of foods were improving my health and making me feel energized. Then, I’d also note down the foods that were causing me physical pain.

What encouraged you to start your blog?

CS: It came to a point where, maybe some years later, I realized that I had been gluten-free for a while, and I wasn’t seeing a lot of recipes that focus on the things I’m used to eating.

I’m a big foodie and I have a deeply emotional connection with food. When I think of food, I think of my family, I think of my mother, I think of being in the kitchen with my grandma. I think about so many different memories and connections that I’ve had and I felt like there must be other people like that, too.

It was really important for me to try and find that community and serve them. To be honest, the website and the blog started out as something that was helping me heal and reconnect with the ways I was feeling left out.

I started taking pictures of my food, and eventually, people started finding my Instagram. I started to realize that there were more people out there like me who missed having foods like fried chicken but didn’t have much knowledge about creating or finding a gluten-free alternative.

What challenges and triumphs did you face navigating the online gluten-free community as a woman of color?

CS: I think social media can breed a little bit of competition. When I started out, I just thought to myself, “I’m gonna do this,” and covered my eyes every time I posted something. I also think I wasn’t enjoying the process as much as I could have because a lot of the audience who were gravitating toward me were white and gluten-free.

I didn’t have a problem with that and I very much think that the gluten-free community as a whole is very supportive of one another. There’s still so much we have in common and we have to deal with things that are said to us on a daily basis.

I mean, it’s kind of similar to being a Black woman and having someone ask, “How does your hair do that?” or “Can I touch your hair?” When you’re gluten-free, if you’re bloated, sometimes people ask to touch your stomach.

Early on, the support was really tremendous. It did get easier with time to find other people in the community who looked like me, and I really needed there to be a connection with other Black people.

Eventually, I actually found other gluten-free blogs that are run by Black people. I think there’s a blog called Gluten Free Black People, he posts pretty regularly. There’s a few of us who message each other, support each other and follow each other. It’s been really nice.

I honestly think there will be like an explosion in this movement, the same way that there’s been in vegan communities. There’s such empowerment in this new journey and the whole movement focused on decolonizing your plate and consuming foods that you were eating before your community was colonized.

But, I will say that initially navigating the gluten-free community was kind of difficult. Most of the time I was only seeing white mothers with children who were showing shopping hauls that had a lot of foods like gluten-free dinosaur-shaped nuggets.

I thought it was cute, but it wasn’t what I was looking for. I wanted to feel like I never got left out at the cookout. Every time I went, my mom had to set aside a plate for me and it made me feel isolated from the rest of the family. Now, I like to host the cookout; I know exactly what I can bring to the table and how to make the things that people view as a necessity to have. They don’t even have to know it’s gluten-free.

With social media, you’re really just combing through the sea of people to find your community. That’s something that I’ve had to get comfortable with. I grew up very shy, and throughout this process, I’ve realized how important it is for me to show my face on the blog. It’s not enough for me to just say that I’m a gluten-free Black girl. I think people really want to connect to who I am, my connection to food and what I look like.

What are the realities of living with celiac disease and how has the inability to receive a diagnosis impacted your life?

CS: I think there’s a lot of strength in having a diagnosis. You can say, I now know what I have and I know how to move forward with my life. For me, I spent years trying to deal with that process and then learning I would have to go back to eating gluten to even pursue that process. I just moved forward and never looked back.

When you’re living with celiac disease, I think it’s important to have a great support system. You need people around you who care about you, love you and are just as interested in learning about your dietary needs as you are. Sometimes when I go out with my friends to eat, they’re more concerned and protective than I am about what’s on my plate.

I think it’s a beautiful thing to have a support system that advocates for you and makes sure you’re OK.

It can be a very emotional and lonely journey. There’s this whole stage of grief that you go through. You’re really in denial and angry and upset. I remember when I first went gluten-free, it wasn’t fully working and I was so frustrated. Sometimes, it takes months for your body to adjust to living without gluten.

Honestly, it can be really isolating. I did actually lose friends in the process. Sometimes, there will be people who kind of disregard your needs or don’t take them seriously.

I remember my friends wanted me to go with them to Ruby Tuesday and I had to bring a different plate of food because there was nothing for me to eat. A waiter came up to me and told me I couldn’t but it wasn’t like I had any other options there. I bought a drink, but there was this emotional disconnect for me that formed when I couldn’t sit down with my friends and share a meal.

I think that a lot of people in the celiac community gravitate toward one another because you don’t feel so alone in that whole process. It’s so challenging to figure out what foods you can and can’t have. There is a spectrum of people who don’t consume gluten; there’s gluten intolerance, gluten allergy or celiac disease. Even within those communities there will be things I can have that other people can’t have. All of our levels of sensitivity are different.

There are so many things you have to be concerned about like taste, mental health and physical well-being. I think a lot of people go through depressive episodes. There’s a lot of changes you have to make and you’re basically just thrown into this whole new world that you have to navigate.

Are there any misconceptions about being gluten-free that simply aren’t true?

CS: The first couple of years that I was gluten-free, there were little mentions here and there, little jokes about gluten-free that I noticed in popular culture. I think one of the first times I heard it was on reality TV, Keeping Up With The Kardashians. I think it was Chloe that was gluten-free at the time and a lot of people joked about how unflavorful or uncolorful gluten-free food is.

I’ve seen that a lot. I’ve seen people not take being gluten-free seriously because they think it’s a diet or something you do when you’re trying to lose weight. It’s so frustrating because my relationship with my body is very, very personal. I think a lot of people don’t understand how touchy it can be to comment on someone’s diet or their body. It’s the way they nourish themselves.

People will clown you for being gluten-free because they think you’re being snooty or bougie. I’ve had to explain to people so many times that being gluten-free is my lifestyle, there are no cheat days. I’m not doing this because I want to look good, I’m doing this because I don’t have a choice.

Early on, people would make comments like, “I don’t know how you can give up cake” or “I don’t know how you can give up pasta, that could never be me.” These kinds of comments used to get to me, but now I just kind of laugh because I personally think that I eat better than most people do.

The process of gluten-free is very much like starting off with a clean slate. You have to build yourself back up from there and people don’t understand how personal this journey is. It’s long and spiritual and emotional. A lot of people think food is food and you shouldn’t be so picky with what you consume.

There was actually this meme where a person walked into a restaurant and requested something nut-free, dairy-free, and gluten-free. The waiter's response was something along the lines of, “You can have a glass of water or you can get the f--- out.”

There’s this idea that people who have dietary needs or allergies are selective with food because they think they’re above everyone else. That’s just not the case.

The gluten-free people I’ve met are so humble — they share, they answer questions sometimes, even the intrusive ones, and try to understand people’s curiosity even if it’s out of ignorance.

Celiac disease isn’t necessarily visible, you never know who’s going through an autoimmune illness or needing to choose a certain lifestyle to protect from flare ups or chronic pain.

Do you have a favorite gluten-free comfort food or recipe that you’ve discovered?

CS: Yes, I have several! I started making empanadas because all you really need is corn, flour and water. I was constantly figuring out different types of fillings and making them all the time. Now, people specially request them from me. It’s one of the first foods that I really started to explore and play around with. I’ve done goat cheese and crab empanadas, jerk chicken empanadas and even avocado empanadas.

The other thing is crab cakes. I think that’s probably one of my most popular recipes on my blog. I can’t stop making them, they’re hurting my wallet. Oh, and I also have to mention fried chicken!

What is some self-care advice you have for people struggling with a chronic illness?

CS: Some mornings, I do wake up in a lot of pain and there are a couple things I do to make me feel better. The first thing is to have an electric kettle by your bed. It makes it really easy to fix yourself a cup of tea. I’m always drinking cow milk or ginger tea because those usually help me with inflammation.

There are also some days where I wake up and feel really, really sad. On those days, I lean into what I’m passionate about. For me, it’s food and cooking, so I’ll watch Youtube video after Youtube video to find recipe inspiration. Eventually, things in my brain start firing off and I get excited about the next thing I’ll be cooking, so planning and fantasizing really burns away my sadness.

Other times, I think it’s just important to talk to somebody who understands how you’re feeling. Sometimes I’ll call my grandma and just tell her it hasn’t been a good day at all. If I was really sad when I was younger, she would send me $20 so I could buy a Sims expansion pack. I would play that all day and feel so good.

I also practice journaling. It really works to write down my thoughts and sort through my feelings. I love to rationalize and analyze how I feel. Self-care is very important to me and I take that very seriously. I take my time.

I’ll also take salt baths to make myself smell good and feel good. There’s different snacks that help me like nuts and seeds. I try to keep things around that are easily accessible, so if I don’t have an appetite, I can still make sure that I have something in my stomach.

Some days, I just let myself cry. I play music I like and just let myself get through it. I think it’s important to know what you struggle with physically and try to have those things readily available, whether that’s a salve to put on joints when they’re aching or fluffy socks to pop in the microwave.

What advice would you give to someone who has just become gluten-free?

CS: My best advice would be to start from scratch. I have certain foods that I know I can always rely on. They act as a base and those foods are typically eggs, salmon, rice and spinach. Whenever you consume gluten it’s good to have an emergency go-to meal or tea on hand that helps with bloating.

Do your research on what things contain gluten because sometimes they can be hidden. That’s why it’s really helpful to re-evaluate your diet and fill it with local produce and staples like rice. Fresh vegetables and sweet potatoes will be your best friend. Build your staples, then from there you can start exploring back into processed food.

Because I’ve been in the game for a while, I know a brand of Trader Joe’s gluten-free hot cheetos and they’re my guilty pleasure, but I can’t have it all the time.

Don’t look at your diet as something that you have to change fully or supplement with gluten-free things. Take this opportunity to wipe the slate clean and build up a new diet with the kind of things that you know are good for your body.

Try not to rely so much on processed gluten-free alternatives. Start from scratch and on the days that you feel like you need comfort food, then look for gluten-free alternatives in the freezer section. Take the opportunity to tap into real food.

This article was originally published on Parachute Media