When the immune system goes against the grain

The sensation of being stabbed in the gut wakes me up at 2am. Sweat coats my skin as I find the bathroom floor. 

“Maybe we should go to the emergency room,” my now husband calls from bed. 

I am 30 pounds lighter than I normally am. All I want to do is get a few hours of sleep. Is this my new norm?

“I’m okay, go back to sleep,” I whisper, brushing away choked back tears.

Gluten isn’t only in bread and pasta? Common foods like cold-cuts and soy sauce were poisoning me unknowingly. Unlike an allergic reaction, eating gluten did not produce harmful symptoms immediately. Delayed reaction and widespread symptoms are primary reasons why Celiac is difficult to diagnose. On top of that, tests to diagnose Celiac are only accurate when you actively eat gluten for 4-6 weeks, during which you are in immense pain, and can still be unreliable.4 

Before I truly understood the long-term effects gluten would have on my body, I used to cheat. People who were lactose intolerant did it. While it was understandable to deem the two cases of gastrointestinal pain to work in similar ways, lactose intolerance occurs when the small intestine does not produce enough enzyme to break down lactose and causes acute discomfort.5 Celiac encourages the immune system to harm my own body tissue, causing long-term physiological damage.

Once I accepted the severity of my disease, I buckled down on knowing how to prevent and manage my reactions. I adjusted to the strict gluten-free diet, giving me some hope that I could maintain my health with a chronic disease. Just as I was finding a new normal, all the pain and exhaustion I had overcome started to re-emerge. Control over my autoimmune disease started slipping through my fingers, leaving me confused and in tears as I battled my body once again.

“I can basically guarantee there’s nothing physically wrong with you,” the doctor smiles.

But, you haven’t run any tests. Are you listening to what I am saying?

“You’re a young woman who is starting graduate school. You’re just stressed. Talking to a therapist will solve your problems.”

Yes, I know stress can heighten symptoms. But I think there is something else at play here. I just want to be okay. Please make it okay. 

“I mean if you insist on getting the tests, I guess we can.” 

I have to be my own doctor too? Well…what if he’s right? Am I making all of this up?

After 3 gastrointestinal doctors insisted my reactions were nothing but anxiety, I took it upon myself to complete 7 months of food journals, a 40-vial blood test, and 1 extensive skin-based allergy test. Turns out, I had developed 12 additional food sensitivities. 

Celiac is about gluten, but autoimmune diseases like to play by their own rules. Known as cross-reactivity, my gluten-specific antibodies became convinced that any molecule that had fingerprints even remotely similar to gluten, like corn, soy, or oat, were gluten.5 I was following a strict gluten-free diet yet had reactions for 6 months straight.  My body flung itself into a state of paranoia, well-meaning to protect me, but heavy handed in execution. 

After removing the 12 offending foods for a year, everything from eggs to carrots to dairy, I began re-negotiating with my immune system. Are grapes okay again? No? I’ll check back later… Healing my gut and bringing down the inflammation allowed my immune system to refocus only on gluten. Some foods I can tolerate in small doses, while others remain on my enemy list.

Smile. I ate beforehand. I’m going to be okay. It’s just a party. 

“I have a special gluten-free dish for you!”

That was so considerate…but I didn’t see them make it. Did they use a dedicated gluten-free pan? A separate sponge to wash it?

“I know you love cookies. Don’t worry, I promise it’s safe!” 

Refusing food feels disrespectful. I want to make a good impression…I knew I should’ve stayed home.

Getting together with friends and family, whether it’s a holiday or a casual night out, can quickly turn into my worst nightmare. Eating gluten-free is one thing, but all it takes is a bit of cross-contamination to cause a full-fledged reaction. Gluten loves to hide in the scratches of pots and pans and makes me just as sick as if I were eating large amounts of glutenous foods.6 Gluten-free options at restaurants and home-cooked meals can still harm me. 

The fear I have when I accidentally consume gluten is unlike anything else; my mind wanders to the potentially permanent consequences of stomach cancer, nerve damage, or infertility.7

My immune system formed unhealthy relationships with gluten and others resembling gluten. In consequence, my brain formed unhealthy relationships surrounding food and social events. I didn’t want to go out with friends and spend the night in a state of anxiety. I didn’t want to feel like a burden if I did tag along, limiting their options. Being visibly outcast as the person with an empty plate or a Tupperware container makes it impossible to fly under the radar.

All these scenarios draw on a not-so-obvious fact: the side effects of Celiac are not solely physical.  Many gastrointestinal disorders lead to a higher prevalence of psychiatric disorders due to the social aspects of food-driven disease.8 Specifically in Celiac patients, anxiety, depression, and eating disorders are common, though the connection between the disease and mental health is not entirely understood.9 Adjusting to any chronic disease has a psychological component, and I lived in a state of fear and animosity with myself until there was a mentality shift, namely when I met my husband. 

“Okay, I spent way too much money at Costco but LOOK at what I found.” His grin is spread from ear to ear as he bounds through the front door.

I blink. He’s this happy that he found me new snacks?

“Happy birthday! Let’s start putting together our own cookbook with our favorite meals.”

A personalized recipe book? He isn’t upset we can rarely eat out because of me?

“Perfect timing. Dinner is ready!” I get home from work as he greets me with a plate of lemon-basted salmon and fluffy mashed potatoes.

He taught himself how to cook and now loves it? Is excited to share restricted meal options?

Rather than focusing on the things I lost and my broken connection to food, he showed me that any connection can be repaired and food can still be a strong love language for me. At our wedding he vowed “to always be searching for more Deanna-friendly recipes,” and our meals have truly been limitless. 

Even though I still face daily struggles, I no longer let Celiac confine my experiences. My wonderful support system helped me love my body, my mind, and my food again. 

There are many diseases in this world that I will never understand the details of living. Rather than focusing on the nitty gritty of everyone’s health, we can be empathic and inclusive. The invisible ties between body, mind, and society can be pulled, stretched, or cut completely. But they can also be rebuilt – re-tied – through empathy. New connections can form in unexpected places, stronger than the ones we thought we couldn’t live without.