Retrospective: 10 Years of Autoimmune Disorder

This blog post is not medical advice, nor does it go into specifics defining any condition discussed or attempt to provide diagnostic tools/advice. It is reflective of my lived experience, and, like many other blog posts, I wrote it to figure out what I think.

August 2022 marks 10 years since I was diagnosed with Celiac disease.

Celiac disease fundamentally changed almost every aspect of how I lived my life. Because of how miserable I was when I was diagnosed, I had no intention of jeopardizing my health, short- or long-term, for a muffin or a donut, or to risk even the chance of cross-contamination.

I had to teach myself a new lifestyle overnight. I had almost no support. My primary physician care looked like: a five-minute phone call telling me I had Celiac disease, that I was really sensitive, and to avoid gluten, which was in wheat. I was also referred to a dietician, but by the time I got to that appointment, I already knew all the things they told me.

I relied on internet forums where people with Celiac disease shared their hard-learned knowledge. For example, gluten poisoning can (and did) come through means other than food. Grains are processed together. That’s why the oat flour in my face wash was making me break out in blisters, even though it was marked gluten free. I found out the hard way that gluten is used as glue in those envelopes you lick to stick shut. I threw out a trash can full of hair products and makeup. I scoured the internet for new brands I could trust. I scanned lists of impossible to pronounce ingredients, memorizing which words were code for “gluten” or even code for “probably touched gluten at some point.”

Celiac disease fed my anxiety and hypervigilance and trust issues. Or maybe my anxiety and hypervigilance and trust issues meant I was better equipped to avoid gluten.

I learned how to cook, learned which flour blends worked, which were gummy, which tasted weird (looking at you, garbanzo bean flour: WHY do you even exist??). I learned how to take care of myself, how to feel safe around food.

I learned I couldn’t necessarily trust doctors’ advice. A dermatologist told me that gluten particles were too large to be absorbed through my skin. This, though, was bullshit, as I learned the hard way via that oat flour face wash. I wasn’t eating the face wash. Nor was I eating the grain-based dry cat food that was giving me gut pain. I was just handling it. (My cat is gluten-free and grain-free too.) I had to find my own boundaries of health and safety, based on my body’s rules, not the shrunken half-knowledge of the medical professionals around me.

The first time I was around wheat at a barbecue post-diagnosis, there was a pile of hamburger buns. Not having smelled it in a while, that sweet, yeasty scent, I was flooded with anxiety. Would smelling it mean it was in my body? Would my immune system smash the self-destruct button? Turns out smell alone doesn’t do it. Being in the same room with hamburger buns won’t hurt me.

But being gluten free wreaked havoc on social engagements. I didn’t know it at the time, but I was running an autistic+ADHD system as if it was neurotypical. That made socializing hard enough. Add to that explaining, every time, why you need to eat the (weird looking) food you brought from home, not the fresh, delicious-smelling food at the gathering. That yes, I appreciate you tried a gluten-free recipe, and no, I’m not going to eat it, because everything in your kitchen has been cross-contaminated. The looks, the disappointment, the disbelief.

I think the disbelief might be the hardest one to deal with. That and the exclusion. Eating meals is a shared sensory experience. When you can’t share, you’re excluded. I love sharing good-tasting food with people around me, probably because I’m somewhat starved for this kind of interaction.

It gets easier to avoid going. And don’t get me started on dating.

Eating gluten free isn’t a diet for me. It’s not a luxury that I can avoid gluten. It’s a survival strategy. I do try to eat healthy, and spend more money on food to do so, not to be “healthy,” but to keep from pissing off my body. Celiac disease means my body is fundamentally fucked. My immune system is confused. It’s overactive. It thinks that the gluten proteins in wheat are a major problem, and to keep the gluten from killing me, my immune system attacks my body, wherever it finds gluten.

Having an immune system on high alert does not make it stronger. It actually makes me more susceptible to getting sick, because my immune system is constantly more worn down than the average person without an autoimmune disorder.

But even this, medical professionals seem in the dark about. I heard a doctor speculate that people with Celiac should be more immune to COVID-19 because their immune systems are more active. Based on my research and understanding, this is dangerously inaccurate.

The body’s reaction to COVID-19 seems to involve the immune system flooding the body with inflammation. For a body with high pre-existing levels of inflammation (like in someone with an autoimmune disorder, someone with mental illness, someone who is neurodivergent), this causes an even faster tailspin of health. When I received my COVID-19 vaccinations, I actually had flare-ups of Celiac symptoms, which I hadn’t felt in years due to my diligence in avoiding gluten. It also took 8 solid days until I felt a reprieve from fatigue. I don’t necessarily think the vaccines have gluten (my second vaccine reaction was less Celiac-y). My theory is that my immune system was activated in a rough, sudden, intense way, and that extra inflammation triggered it to flip through its rolodex of reactions, one of which is the Celiac reaction. I can’t imagine what actually getting COVID would do to me. I’ve heard anecdotal evidence that COVID-19 can actually trigger autoimmune conditions in people who were healthy before. Based on what I know about inflammation, this doesn’t surprise me. What does surprise and shock and horrify me is that doctor’s GUESSWORK pronouncement that “wouldn’t Celiac make you more immune to COVID?”

(As a note on what I’ve observed, and not fully researched medical information, long-COVID sounds a lot like an autoimmune disease to me [pain, fatigue, brain fog, hair loss, increased susceptibility to illness, unexplained symptoms]. Take it from someone who knows what it is like to have daily health threatened in the long term: don’t play roulette with your health. Wear a mask. And don’t throw compromised people shade for masking and social distancing. Respect and understand our desperate desire to NOT add another condition to our bodies.)

But this kind of misinformation from an actual doctor is par for the course of the sort of medical support and follow-up I’ve had in the last 10 years, which is essentially: none. Celiac disease is not uncommon, but doctors still don’t seem to know shit about it. Folks with Celiac are more likely to have or develop other autoimmune conditions (thyroid issues, Crohn’s, etc.). They may also have trouble absorbing nutrients. Based on my research, I should have been screened yearly for common co-existing autoimmune disorders. I have maybe had my thyroid checked twice. That’s it. No tests for vitamin deficiencies. Nothing.

One year after I was diagnosed, the DOJ announced that Celiac disease qualifies as a disability under the ADA. No one told me that either.

It’s hard to believe it’s been ten years. A whole decade. One third of my life. I think of all the times I kept myself from grieving everything I lost or missed out on, because I was afraid of being buried under that sadness. I didn’t want anyone to feel sorry for me. I was still very much in a “muscle through it” rhythm of living my life. This wasn’t a terminal diagnosis, after all. Not a life-altering accident.

But it is permanent. And it is life-altering. It’s heavy, the burden of cooking for myself every day, of shopping and prep and washing dishes, of researching brands and products, of reading labels, of awkward social encounters, of missing eating out at restaurants, of decreased social connectivity, of the extra work and stress traveling involves, of days where my health is just poor for no discernible reason…

I get into a rhythm of living and I forget how heavy it is. How disabling.

My relationship with the term disabled is complicated. I recognize my internalized ableism from living in a society that typifies a “normal,” able-bodied way of moving through the world. I recognize my internal resistance to identify with a term that mainstream society interprets as: deficient, less valuable. I recognize that none of that is true. I recognize the instinct that tells me claiming this term for myself will, to some, make me seem needy, attention-seeking, and dramatic. I recognize my fear that people will think I don’t have a legitimate claim to this term.

But I also need to recognize this weight, this burden of living, this stream of energy and knowledge I must spend daily that the majority does not. I need to recognize the realities of living in this body, of its levels of health and wellbeing, of its needs. I need to honor my lived experience.

My lived experience is disabled.

It’s taken me 10 years (and one long, winding blog post) to see it.

My instinct is to leave you with silver lining. But is there a silver lining to an autoimmune disorder? To the medical, physical, and emotional labor and trauma and exhaustion that go with it? I am giving myself room to process that. I am giving myself permission to be sad about it. And if you deal with Celiac or another condition or disability, I extend deep empathy. There is a way forward. We have futures. They may be liminal, they may be misunderstood, painful, frustrating, tiring, heavy. But I don’t think grief always leads to despair and surrender. I think ignoring our grief is a mistake. Skipping over it, over any emotion, cuts us off from knowing who we are.

I am proud of myself for the way I have fought for my health. For the ways I’ve educated myself. For the way I’ve advocated for myself and explained in the face of ignorance and ridicule (“You aren’t EATING the cat food are you??”). For not giving in. Resiliency is a shitty consolation prize. It’s not a trait I wanted to develop. I had to develop it to survive. But turns out I’m proud of myself for surviving, too, for not ignoring my embodied experiential knowledge, and for doing my best to thrive.

Hey, what do you know. A little silver lining after all.