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My Celiac Disease Is More Than Just a 'Tummy Ache'

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Two months ago I was diagnosed with celiac disease. To many of you this may seem like no big deal. You figure that I just can’t eat gluten, and I will be fine. But it’s not that easy.

When I get “glutened,” meaning I consume gluten, it’s more than just a tummy ache. First comes the intense tension headache, then comes the throwing up, overwhelming nausea, diarrhea and intense stomach pains. Still, this may not sound like a huge deal to you – more like a stomach flu than anything. The thing about celiac disease is that it’s an autoimmune disease, meaning that when I consume gluten, it is not like the typical allergy. My body begins to fight itself. My stomach launches into an inflammatory response which is what causes the above symptoms. My brain becomes foggy, and I become overwhelmed by pain. I have hit high levels of pain due to other chronic pain conditions, but this pain is by far the worst. I have hit a nine out of 10 with my celiac disease. I have sat on my floor sobbing, screaming and wanting to die from the pain of this condition.

Yet, most people are under the impression that I just get a slight tummy ache when I consume gluten. What these people don’t see are my last few months. The harsh truth is that before my diagnosis, I felt like I was dying. I lost 10 pounds in a short amount of time. I was unable to eat without reaching a level nine of pain, throwing up or a combination of the two. There were many theories thrown around for why this was happening — such as my Ehlers-Danlos syndrome — but when the blood test and biopsy came back positive it turned out to be celiac. I never even knew celiac could be this bad. When I had talked to people in the past, they had told me that when they eat gluten their stomachs hurt, but I did not realize it’s a kind of hurt that makes you feel like you’re dying.

The point of me writing this is not for pity. I don’t want to have you pity me for my chronic illness because it is something I did not choose and it will never change. What I want from you is understanding. Understand that 20 ppm of gluten in a product will set me off into a full-blown attack. Understand that you touching my snack means I can no longer eat it. Understand that my celiac disease is real and is much more than a tummy ache.

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Image via Thinkstock.

Originally published: February 8, 2017
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