Every Story Counts

By Rachel Sircy

online-marketing-hIgeoQjS_iE-unsplashI know that I’ve written many times about how celiac disease affected me before I was diagnosed. The symptoms were all over the place, and no doctor seemed to be able to put the clues together to come up with what was wrong with me. I experienced no digestive issues for most of my life. The symptoms were mostly things like forgetfulness, inability to concentrate, joint pain, and debilitating fatigue. I developed stomach and intestinal issues during my late high school and early college years. It was only after the gastric symptoms – the bloating, the reflux, and the extreme pain I experienced right after eating (which kept me from eating more than about a cup of any given food at once) – became unbearable that a gastroenterologist looked at me and said, “I think I know what’s wrong with you.” Only people who have waited years for a diagnosis know what a blessing it is to finally hear those words.

I don’t know exactly how my mother felt all those years that she looked at me, knowing something was wrong, but not knowing what it could be. Of course, my mother turned out to be a celiac herself. I think there was always a kinship between my mom and me because we were both sick with something we couldn’t name and that, in fact, we weren’t always sure was real. I remember one time, in particular, telling her that I didn’t feel well. She asked me what I meant, and when I told her that I didn’t know, I just felt bad, she shook her head knowingly. It was as if we both understood that we didn’t have the language to talk about the ways we could feel our bodies failing us sometimes. She always believed that the sickness that she felt was the same sickness that I felt, and she was right about that.

She was wrong about what the sickness was, though. She’d been told all her adult life that all of her health problems stemmed from low iron levels. No doctor could tell her why she was anemic. Doctors have a word for when they’ve thrown up their hands and can’t figure something out, it’s idiopathic. I recoil from that word every time I hear it or see it written. If a body is malfunctioning, there is always a reason. That’s my opinion anyway. My mother’s anemia turned out to be only a symptom of her illness: celiac disease. The borderline anemia I had experienced from early childhood turned out to have the same cause.

I keep sharing my story because I believe it’s important for people to know what celiac disease can look and feel like. Raising awareness will get more sick people diagnosed. And that is why I found this story from the New York Times Parenting section so compelling. It is the story of actress Casey Wilson and her oldest son, whose depression, lethargy, broken leg, seizure, and apparent autism all turned out to be symptoms of the same underlying problem: celiac disease. The story is both terrifying and hopeful. Casey’s son, then under four years old, was too young to be able to tell his mother that anything was wrong with him, but Casey and her husband kept watching and finally found a doctor who was able to connect the dots and give them those incredible words: “we have a diagnosis.” And though her journey to her son’s diagnosis was something out of a parent’s nightmare, her son has experienced an amazing recovery just by following a gluten-free diet.

If you have a story of diagnosis, for any disease, (particularly one that’s tricky to pin down, like an autoimmune disease) I would encourage you to share it in whatever way you can. You never know who might be listening, watching or reading. Your story may give hope and much-needed information to someone out there who is still struggling with an inexplicable illness.

For those whose lives or loved ones may be affected by celiac disease, there are many outlets for you to find information and to share information, but I would recommend checking out the Celiac Foundation’s website at celiac.org. You can find out information about celiac disease and gluten-free living, sign up to participate in clinical trials (in certain areas of the country), join the iCeliac patient registry, take part in their student ambassador program and even share your story with Congress.

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