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When I was diagnosed with Celiac back in October of 2020, a flurry of emotions ran through me.
Among them was worry over the inconvenience this new life shift would entail, as well as reckoning with how it might limit me from there on out.
Gluten is everywhere, and avoiding it can no doubt be a challenge. Through the transition to a gluten-free lifestyle though, many Celiacs also grow significantly.
In honor of Celiac Awareness Month (May), here’s some of what I’ve gained in my 18 months of living with this diagnosis. While these are based off my experience with Celiac specifically, I think many of them can apply to people facing other challenges as well.
1. Shedding some of the people-pleasing and learning to care less what people think—especially strangers or acquaintances.
When I first came out as gay many years ago, I remember feeling uncomfortable holding hands in public with the woman I was dating. Why can’t they stop staring and judging? I’d ask. My mentality has since shifted to: Let people stare; I don’t have to explain my life to them. I also don’t need their approval. That acceptance came with time.
Similarly, toward the beginning of my Celiac journey, worries over what people would think about the new precautions I would need to take confronted me. Something as simple as my friend inviting me over for pumpkin pie was cause for anxiety. Will she be offended if I say no? I wondered. Will she think I’m being too difficult or overly vigilant?
Author Jenny Levine Finke ’s recollection of similar feelings (in her book Dear Gluten: It’s Not Me, It’s You) resonated with me: “What will my friends think after they see how I interrogate the waiter and sound like such a diva when I place my order?’ This fear of confrontation and having to look ‘different’ is sometimes more paralyzing to me than the fear of getting glutened.”
I moved past this pretty quickly, though. When you’re Celiac you almost have to. I’m by no means totally impervious to what other people think now—it’s more that my health has taken on significant importance, to the point that prioritizing it over approval has become second nature. The part of me that feared confrontation or being a burden to others began to take a backseat to asserting my needs. Nowadays, the risk of looking like a nuisance is worth taking for the reward of preserving my health.
This new degree of self-care also took form in other ways. For instance, months before my diagnosis, I’d made a list of qualities I’d like in a romantic partner. After diagnosis, I took that list and said, “This is who I’m going to be for myself while I’m healing.”
2. Embracing humor, as it helps to lighten the load.
One night a few months before my diagnosis, I was dining at a restaurant in Cambria, California. The bread came served in what looked like a flower pot. Warm, fluffy dough sprouted from the orange clay container, soft as the belly of a sun-bathing corgi. A fire crackled in the center of the room. It was all very cozy, homey, and Cambria-esque.
As I was looking down at the pages of my Glennon Doyle book, I heard a crash behind me. Turning to locate the source of it, I then saw an older man lying crumpled on the floor. The man had tugged the tablecloth on his way down, taking it with him (along with all the plates and silverware that had been resting atop it).
A nearby male diner rushed over to assist. “You want some help, man?” he asked, concerned yet also casual at the same time.
“He needs a knee replacement,” his wife explained. “It gives out sometimes.”
“Oh I’ve had two of those myself,” said the male helper, instantly able to relate.
The fallen man laughed heartily. “Can’t wait to get this guy up and running again.”
Their interaction struck me as the older person’s equivalent to a soccer player tripping and face-planting in a pile of mud mid-game—only to pick himself back up, laugh it off, and continue on. The humor, dignity, and kindness that all arose from what could easily have been a humorless and despondent situation moved me.
When I first was diagnosed with Celiac in 2020, gluten haunted my dreams at night. In them, I’d accidentally eat glutenous food. Or I’d forget I had Celiac only to remember mid gluten binge (after it was already too late). As I walked down Costco’s bakery aisle, the theme song from Jaws would begin to loudly play inside my head. Even just reading the word “wheat” on page 133 of Entangled Life brought my heart-rate up.
Laughing about these things helped to lighten some of the load I was carrying.
3. That it’s okay to feel our full range of emotions; we don’t always have to be positive.
Post-diagnosis, my (physical and mental) healing process occurred in fits and starts, stretched throughout the long span of a year. Not all days were bad—but some were. I had to learn to tell myself that this was perfectly okay.
I wrote myself a permission slip: you don’t need to put on a happy face all the time. When your mind is foggy and your body weighs you down like a bag of bricks and your brain feels like a broken-down car with a hissing engine (some days the tinnitus in my ear is so loud, this is what it feels like), it’s okay to admit, “this sucks.”
As chronic illness writer Sara Ramey put it, “Inflammation, dysbiosis, infections, gluten, toxins—these deeply affect our brain and our emotional state, and cannot be forcefully overridden with affirmations and gratitude.”
Admitting when we’re not feeling our best is necessary and honest. It helps us get through it faster. It may even help our overall health. Authenticity and ceasing to avoid unpleasant emotional experiences has that salutary effect.
4. How it deeply benefits us to welcome the positive when it does knock on our door, though.
As heavily as the negative weighs down on our world, positives abound as well—in both simple moments, and the more magnificent. When I pay attention and open my eyes and senses to them, I feel genuinely happy—and it’s a happiness I don’t have to force. Nor is repetition of positive mantras necessary for conjuring it.
It’s not about denying the negative’s existence. Nor is it about forcing contrived positivity into my situation as a way of avoiding the more all-encompassing bleaker reality of it. It’s more about allowing the two to coexist, sometimes even side by side, or sequentially throughout the span of a day or week.
As Charity Delmo wrote in Tiny Buddha, “Let it out. Then let it go. Honor your emotions, but always choose to dwell on the positive ones.”
I try to allow myself to feel whatever it is I’m feeling in the moment. If it’s negative, I don’t try to change it—but if something positive comes knocking, I absolutely and wholeheartedly permit it entrance.
5. We learn what it’s like to need reasonable accommodations. Not everyone understands, so we appreciate the ones who do.
It’s always disheartening to be told—especially by restaurants that I used to love eating at before my Celiac diagnosis—that they are unable to accommodate my needs. This happens often. One night, the restaurant employee on the phone sighed and asked if I was “finished asking questions yet,” because he had other phone calls to take.
Another night, after feeling shot down by a former favorite, I managed to find a Thai restaurant whose staff were willing to take precautions to prepare me a safe meal. When I opened the bag to see my food labeled with “Gluten allergy! Very serious!” it filled my heart with warmth and gratitude.
What might have seemed like a relatively small gesture to non-Celiacs meant the world to me. It moved me to know that someone was taking our needs seriously. It made me feel seen. I kept the receipt to serve as reminder that for every place that doesn’t understand our condition, or even sees it as a nuisance, there exists a gem who cares and is willing to try.
6. Appreciating and keeping supportive people close becomes all the more important.
Some of the friends I most value now are the ones who helped ease the burden of the transition. Some had gluten-free cookbooks delivered to me shortly after my diagnosis. Others were there to listen and just be there after my endoscopy—when I called scared because I’d just found out that my small intestinal villi were completely destroyed (highest level of damage possible). I appreciate the ones who cared to learn, ask questions, and simply hold space for me.
It’s one thing for friends to not always understand what you’re going through, or to sometimes say the wrong thing. It’s another for them to be truly unable to handle any degree of health-related topics, or any discussion related to reminders of the fragility inherent to our human condition (possibly due to their repressed fear of their own).
I’ve heard some Celiacs say they feel like they can’t talk about their health issues with their friends and family. Maybe they don’t seem to be listening, or they can’t understand. Finding and spending more time with people who do make that effort can be such a balm for those negative experiences.
When I was at my sickest, I needed to keep these people closest and filter out the ones who couldn’t, or didn’t want to make the effort to understand.
7. We become forward-thinking planners (particularly when it comes to meals and food-related things).
Pre-diagnosis, many people in my circle knew of me as the friend who always carried snacks. After a night out clubbing in Sacramento, my friend Chris marveled at how I had seemingly conjured a bell pepper out of thin air (it had been in my purse).
“You make such healthy feasts!” housemates would remark, as orange, purple, and red bell pepper slices lit up long baking pans when they passed by me in the kitchen. The freezer was perpetually stocked with frozen blueberries, cucumbers, and bananas for my daily smoothies.
These habits boded well for my new life with Celiac, wherein I found I must always be prepared with my own snacks or meals—in case the food at whichever gathering I go to isn’t entirely gluten-free, or has inadvertently been cross-contaminated.
According to Barry Schwartz’ paradox of choice theory, having too many options can overwhelm us, not to mention gobble up our time. Celiac forces us to narrow our options, which makes us more mindful of our food choices. I can’t just run down to the local 7-Eleven to indulge myself whenever I feel like it; I have to plan a trip to gluten-free Mariposa Bakery, which is only open at certain hours. That said, my indulgences have become more planned and deliberate. I feel better about, and more in control, of my eating overall.
There are so many things in life we can’t control—I was reminded of this all the more in a year like 2020. What we put into our bodies is one of the few things we can. So in a certain sense, being forced to take more care with my food choices felt empowering.
8. We become more assertive and discerning.
Celiacs are forced to become advocates for ourselves. We become that diner at the restaurant asking questions some might find annoying.
I’ve learned to be proud of myself after having a conversation like that, and I hope other Celiacs can be too. Each time we have one, we’re strengthening our assertiveness muscles, while also taking care of ourselves. Talking about our needs in a kind and direct way is a form of self-care.
Even though we may not immediately notice it, I think that over time the skills we gain in learning to speak up for ourselves end up carrying over into other aspects of our lives too. Why stop at advocating for our guts? Why not advocate for our souls, our hearts, our entire beings as well? I started to employ the same skills I use to avoid gluten to keep unhealthy people and behaviors out of my life, for example.
9. The importance of awareness and taking action in certain instances; just waiting things out or letting them be isn’t helpful advice for all situations.
Years before my Celiac diagnosis, I sensed something was amiss inside my body. I’d become all too aware of the role diet played in my mental health, noticing how it influenced my overall mood. I knew I felt better after eating certain foods, and worse after others. I’d already begun to read food labels pretty thoroughly.
Though I was certainly taking action (through practicing these habits), I still didn’t have the full awareness I needed yet. I knew that some of the other ingredients I was screening out and limiting my consumption of were bad for all bodies—but I didn’t know that for mine specifically, gluten was toxic.
It’s important we pay attention to our bodies and not just assume a state of unease will resolve on its own. Time doesn’t heal all wounds. Healing them also requires awakening to what’s causing them.
More than just time, we also need awareness.
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