In the world of culinary dreams and aspirations, my journey takes a different turn - one marked by the intricate dance between passion for food and the relentless demands of a chronic disease. As I embark on this essay series, delving into the complexities of pursuing a career in food while honoring my body's unique needs, I confront a reality where dietary restrictions become more than just limitations; they become the battleground for my health and creativity.
Endometriosis, a full-body inflammatory and immune disease, is among the top most painful conditions known to exist, and it's getting in the way of my career aspirations and pleasure.
Abnormal yet benign adhesions in the pelvic region are what can cause the disease's characteristic pain. When I was first diagnosed in 2019, I was strongly advised by my doctor to cut out gluten and dairy to help with the rampant immune dysfunction.
I have never been diagnosed with celiac disease or lactose intolerance. Yet, research by reproductive immunologist Dr. Jeffery Braverman demonstrates that many women with endo have the genes associated with celiac disease — see this line from his 2014 talk: “Gluten is a very processed foreign antigen in this country and women with these autoimmune haplotypes that are consistent with endometriosis, they react even more strongly to foreign antigens, and gluten being one of them, so I get them all off gluten immediately.” These genes may often manifest as non-celiac gluten sensitivity.
Considering that endo is a complex, poorly understood disease with no cure, doctors often grasp straws when it comes to guiding patients. They typically give you a few unsavory, outdated treatment options, none of which I was interested in.
So, dietary changes and functional medicine protocols became my preferred methods. My endo had not progressed too much, and I lived a mostly pain-free life up until I began working in food media. This added a whole new layer of complexity to the dietary management side of my disease.
One notable example of someone navigating a career in food with endometriosis is Padma Lakshmi, an Emmy-nominated food expert and NY Times bestselling author, television host, and producer. She founded The Endometriosis Foundation of America (EndoFound), which lists gluten as one of the top ten foods to avoid.
Did Padma ever have to cut out gluten and/or dairy to manage her endo? Furthermore, could the filming of Top Chef have prevented her from doing so? After all, her job was to taste what the contestants served, gluten and dairy free be damned.
Every industry has entrenched norms, and food media and restaurants are no different. When the digital publication I write for sends pitch calls to their freelance roster, they have specific content ideas and SEO obligations to meet. Gluten and dairy-full recipes get the most traction, and they often specifically ask for recipes in this realm. Think pastas, cookies, and dairy-based dips.
The culinary arts are, ultimately, a profoundly intimate pursuit with immense hedonic impact—see this line from neuroscientist Morten Kringelbach's 2015 study on the pleasure of food: “Overall, the accumulated evidence shows that the pleasure evoked by food is remarkably similar to that of other rewards, suggesting a unitary pleasure system, whether engaging with food, sex, social or higher-order rewards.”
We’re all familiar with the type of food content that goes viral: homemade pasta with entire mounds of glossy burrata erupting on top, knives scraped across toasted sourdough and focaccia to showcase golden crustiness, colorful compound butters, and gooey gluten-full dessert porn. Many, including myself, consider these foods as pleasurable as a good lay.
Admittedly, I subscribe to many common misconceptions around gluten and dairy-free cooking, such as reduced flavor and enjoyment. Not to mention the absolute rigmarole of restaurant dining and traveling with dietary restrictions. It's becoming easier, I guess, but it's still extremely difficult. If you’ve never worked in restaurants, you might be shocked at how many things randomly have wheat added to them. Think hollandaise, salad dressing, soy sauce, french fries, breakfast potatoes, taco seasoning, and imitation crab, to name a few.
As a newcomer to the food media space and a cook at a cooking school, it can sometimes feel like career suicide to state that the recipes I work on must be both gluten- and dairy-free. I know it's not actually career suicide, as there are plenty of successful GF and DF recipe developers out there, many of them right here on Substack. For example, my friend
, a cooking instructor, culinary tour founder, and professor in Barcelona, who teaches a popular GF sourdough class on Zoom.Thanks to Camila, I finally have bread that is pleasurable to eat, unlike the cardboard-y substitutes I had tried previously. And I’d be remiss not to mention that many cuisines around the world are rice- and corn-based and, therefore, often inherently gluten-free.
Still, the tradeoffs for prioritizing my health over my career ambitions and pleasure are tricky. The dominant food ethos in the United States is starkly at odds with the lifestyle often recommended to people with autoimmune or inflammatory conditions—not to mention at odds with the planet, but that's a different essay. For example, at my cooking school, there are very few classes with neither gluten nor dairy on the menu.
That said, I've spent the past year cooking and eating whatever I want, and it’s been fucking fantastic. But now, of course, I can feel my inflammation flaring up, which concerns me, especially since I’d like to have a baby soon. I haven't yet found the perfect solution to navigating my condition while pursuing my career aspirations, fertility, and pleasure.
I could find different digital publications to freelance for, as there is a market for this type of work. Perhaps developing anti-inflammatory recipes for people with invisible illnesses like mine is the niche I've been looking for. Maybe that door is right here — self-publishing on my growing Substack.
I empathize with others who are living with these immune-related conditions, such as endo, lupus, and rheumatoid arthritis. The treatment options can be limited and frequently involve restrictive diets, which, when you don’t have celiac disease or lactose intolerance, can start to feel needlessly restrictive.
When craving a perfect slice of comforting pizza to soothe my weary soul, the last thing I want is a gluten-free, dairy-free substitute that tastes of cardboard and food-like substances. But giving in to the real thing often causes my inflammation to flare up, resulting in non-life-threatening yet still life-impacting symptoms. And around and around we go.
I’m jealous of other people in food who can (presumably) eat and develop whatever they want and never have to navigate these dietary challenges. But I've also realized that I have to accept the cards I was dealt, however unfair they are, and give my body what she needs.
It’s an intricate balance that I will likely be navigating for the rest of my life. I don’t have to love it, but I am trying to accept it while also challenging the food industry norms that make it difficult to achieve this balance.
Thank you for writing this. There needs to be more awareness on this topic. It's even harder if you're allergic to a common gluten-free substitute. Recently, I have seen an increase in successful gluten-free blogs and cookbooks. You're a great writer, so I do believe you'll find success on Substack. As food writers, I hope we can all support each other, regardless of dietary differences.
Well put. I appreciate what you write because it does feel unfair. I have gastroparesis, so eating anything—any food—can cause intense dry heaving, nausea, pain and zero appetite. Makes it pretty difficult to develop recipes or photograph food.