For many people, this has been their lives. They’ve had symptoms from the beginning – and sometimes, they’ve never known they had symptoms. Me? My celiac story isn’t quite like that. If you didn’t start off with celiac disease, the theory is that stressful events are the culprit. It’s basically like turning on the lights in the house – Celiac walks in the door and opens all the lights. Your HLA gene has turned on.
I got lucky. My primary care doctor had, two weeks before I got SUPER sick, been to a conference on celiac. He said, “your symptoms aren’t normal but let’s just check.”
A week or two before I saw him, I started compulsively throwing up. Everything, anything. It started with the whiskey – I was learning to hold my own in the alcohol realm since I left my ex and had never projectile-d quite this badly. My now husband drove me home as I puked all over my poor little baby blue Miata.
Pause. Honest moment. My stressful event happened 10 months prior. This is the part about my ex. At the time, I didn’t think of it as stressful – I thought of the 7 years before that moment as stressful. The moment I left was one of the most liberating moments I had during my 27 years up to that point. My ex-husband was abusive – physically, emotionally, and mentally. I let him be – for many reasons. Co-dependency, fear of being alone, insecurity, religious belief. There’s a million excuses and he left quite a few scars. But when I left? I realized I never knew me. I never got to experience ME and the freedom that came with being me.
I see now that I may have had subtle symptoms for years before. Little things here and there… like the never ending tingling that I would have in my right ring finger and pinky finger. That one went away once I started absorbing my nutrients. Alcohol gave me horrible diarrhea – always thought it was the sugars but I was always drinking whiskey (and not the high quality stuff).
I puked for about two months while we waited for my biopsy and biopsy results. I puked up ice chips on my night shifts in the pediatric ER I was working in. It was pretty safe to say I had it once my celiac panel came back through the roof but I wasn’t going to go gluten free until we had tested. My biopsy was scheduled. Positive for celiac type inflammation in my villi.
I don’t know which was worse at the time – not knowing why I was sick or finding the diagnosis. I was depressed for a while. It could have been partly going back to night shift that made the depression worse (and not sleeping) but it hit me very hard how badly celiac was going to change my life. It impacts the social, the fundamental, the biological, the very core of your life in society. Should it? Maybe not – but when we live in a society that functions around food and gluten… the diagnosis turns you into the outcast. The worrywart. The awkward jerk at the restaurant that annoys the waitress and gets your food spat in.
At the end of the day, I don’t know if it was the abuse that triggered it. I don’t know if my body finally gave in once it had a moment to breathe and that’s what triggered it. The truth is – we are barely scratching the surface in our understanding of celiac disease and there will be so much more to come. In the meantime, I’m grateful that, despite how impacting it is, there is a treatment. Being gluten free and feeling better is totally worth it.
What was your stressful event pre-diagnosis? Did you have it from the beginning? I’d love to hear your stories!