by: Nadia Gerassimenko

I had the worst stomachache when I was six. It crept up unexpectedly and completely incapacitated me, leaving me lying and moaning, tears streaming from my eyes. I felt impregnated with heavy gases and sometimes it felt as if sharp knives were cutting through me. If it weren’t for my mother holding my hand, I didn’t know how I would survive the night all alone, how I would even calm down and drift off to sleep. The next day when I woke up, I felt like I had gone through a battlefield with my body.  I have yet to have won the war.

If I only knew what I know now—that I am gluten intolerant—I could have prevented much needless suffering and my immune system from faltering.

Attacks like these, of origin unknown then, didn’t happen often. When they did, I couldn’t be with someone for fear of snapping at them undeservingly; I just wanted to be left alone with my body and drift off to sleep. Over time, the attacks weren’t as severe, since my body had adjusted to a new pain threshold level. I learned to deal, and even co-exist, with it in silence, disguising my pain with a smile and a denial that I was hurting inside, but something was wrong. I kept noticing being bloated and gassy quite often after meals. My way of dealing: Pepto-Bismol and my bed and pretending that everything was okay, that this was the norm. I didn’t know better. And nobody else around me—except my parents—knew what I was going through.

In my early twenties, I ended up in ER and urgent clinics quite often with abdominal pains extending to my bladder and uterus. It was hard to discern which pain was the culprit, which pain was worse. Some doctors said I had constipation, others told me I had IBS. Some theorized I had endometriosis, others thought it was interstitial cystitis. None of them ever thought to test me for gluten intolerance.  And I didn’t know what gluten—a protein found in grains like wheat, rye, barley, spelt, and even oats if there is cross-contact with the other grains—was back then and how it can affect one’s health and wellbeing. I was officially diagnosed with both endometriosis and interstitial cystitis some time later. I tried many of the usual band aids they prescribed, all to no avail and with many disconcerting side effects. Besides, both diagnoses behaved in an irregular manner for me, which made me question it all in the first place. I treated both with acupuncture, finding some level of comfort—or perhaps ending up in another pain threshold level, getting used to the pain, accepting the new normal.

I learned about gluten when I was diagnosed with chronic Lyme Disease and co-infection Babesia at twenty-five. It is recommended to avoid sugar, gluten, and dairy for Lyme patients as these ingredients are the perfect storm for feeding the bacteria and flaring the already present inflammation within the sufferer. I did my best to eat healthy and cook my own meals, but I was constantly fatigued and achy and depressed from my treatment and the disease that I broke my diet habit from time to time by eating out or getting take out. I’d then get headaches, my body would burn up all over, and my stomach would bloat up, but I didn’t take it seriously enough. It didn’t dawn on me how important clean nutrition was, especially for a person with multiple autoimmune and infectious diseases.

When I was twenty-six, I got a stomachache after a particularly rough and emotional afternoon. Nothing in my medicine cabinet helped, nor did sleeping it off reset it the next day. The pain did not relent the day after and then the day after that. I even started bleeding from my womb when I wasn’t supposed to. I saw several specialists—including my primary care doctor, a gastroenterologist, a gynecologist—who tried to diagnose me with lab work and procedures and help me the best they knew how, but it wasn’t enough. Some of the medication they gave me only harmed me more. Eventually I adjusted to the new normal, though it was depressing and exhausting. The attacks kept happening more frequently; sometimes I would almost pass out from the pain and strain in my body. Having to deal with that on top of all my diagnoses up to that point was too much to handle or to deny its existence any further.

One day, I woke up with an epiphanic feeling: If I want to get well, I have to be my own health detective and find a doctor who can be my real healer and advocate. I found many, but only few held some answers to my questions. Only one still treats me to this day by undoing all the harm done by me and my previous doctors and by building me up from inside out.

Prior to seeing her for the first time, I took many tests to rule out any possible infections in my bloodstream, any mineral and vitamin deficiencies, and any possible genetic mutations. The latter I’ve gathered through 23andme. While the test results online are revelatory about where you come from and rare genetic mutations, it’s the raw data that is most precious in telling what’s going on in your body. The results were very telling in why I am so depleted nutritionally, why I’m prone to anxiety and depression, why I must be eating a lot of folate-rich foods and even supplementing to compensate for deficiencies, and lastly why I must avoid gluten indefinitely.

“You’re Celiac,” my naturopath told me when she ran my data through her specialized program; and she knows—she has celiac disease too. That means if I were to consume anything with gluten, my body would start attacking the small intestine leading to inflammation, then damage to the villi, then lead to malabsorption of nutrients. Gut healing may take years.   

When she told me, I was already gluten-free for half a year partly because I wanted the critters inside me dying, not thriving, and partly because every time I ate something like a pizza slice I would feel horribly ill, inflamed and bloated. Now I knew in part why. The knowledge that I have celiac has further empowered me in eating better, and that means cooking my own organic healthy meals two to three times a day. When eating out, I make sure my food is fresh and gluten-free at all times. While it took me so long to get to the bottom of everything, it’s never too late to turn my life around. While there’s still a lot of undoing and healing that must be done—especially my now sad leaky gut—I know I’m on the right track.

I only wish I knew about being Celiac from the get-go, but unfortunately many like me get diagnosed only well into their adult life. And unfortunately you can’t un-eat all the gluten-containing pizza, pasta and cookies you now regret eating. I only wish doctors would consider Celiac Disease before slapping on IBS as a diagnosis. But I am grateful more awareness is spreading and more schools, restaurants and grocery stores are offering gluten-free options for the celiacs, the intolerants, and the sensitives– something that didn’t exist in my youth. And while I may miss out on all the goodies that people without sensitivities can eat, I’m much happier not getting those attacks anymore.  

Main photo courtesy of: Hermes Rivera