“I feel better when I don’t eat gluten, but I don’t think I have Celiac Disease.”
If I had a nickel for the number of times I’ve heard this phrase – well, let’s just say that I could buy a whole lot of gluten free cupcakes.
A friend recently told me about a family member of theirs getting diagnosed with Celiac Disease. I try not to be preachy when someone tells me this, so I casually said, “Oh wow. Well did you know that Celiac is genetic? You might want to think about getting a blood test.” The response? – “Oh I can’t have Celiac Disease. I don’t have stomach aches.”
While this drives me slightly crazy, I have to remind myself that they are not being intentionally ignorant – it is simply a lack of awareness. While the words “Celiac Disease” and “gluten free” are becoming much more prevalent in today’s society, many people are resistant to the idea that they themselves could be affected by this disease. Perhaps it’s a lack of specific knowledge in the media. Perhaps all they think of when they hear the words “gluten free” are stomach cramps or hipsters with expensive muffins. Perhaps they just don’t want to know; they don’t want it to be them.
Perhaps it is because they don’t realize that there are a whole host of other symptoms that have nothing to do with stomach aches. In fact, many Celiacs don’t have any digestive issues at all. Instead they have symptoms like joint pain, nutritional deficiencies, muscle spasms, eczema, bruises, weak nails, acne, infertility, miscarriages, depression, anxiety, ADD, migraines, mood swings, gum disease, mouth sores, tooth enamel erosion, bad breath, asthma, chronic fatigue, hair loss – the list goes on and on. Heck even having no symptom can be a symptom! But even without having outward symptoms, the body is wreaking havoc and attacking itself on the inside. That’s why this disease is so scary.
And that is why my firm stance is you cannot know you do not have Celiac Disease unless you get tested for it.
“But I don’t have a family history of Celiac,” some might say. Well, that’s what I thought before I got tested. I was the first person in my family to get diagnosed. My mom went gluten free shortly after I did, and we’ve traced various symptoms through her side of the family all the way to my great-grandmother who (at the time of her death) was suffering from gastrointestinal cancer, a complication of undiagnosed Celiac Disease.
I have to remind myself to be patient when someone makes a comment about their non-Celiac status pre-testing. They just don’t realize how common it is or that there are more than 200 potential symptoms. I cannot push them to get tested, even though I think that literally everyone should. But what I can do is write this blog post and continue to gently pass along facts and good information.
I’m going to put this out into the universe – it is my hope that someday the medical community will step up. That one day it will be standard procedure for every child to get a gene test, and those with a positive gene will be given an annual Celiac blood panel as a part of their yearly physical. Covered by insurance as preventative care. Think of the massive numbers of people who would be diagnosed! People who would no longer be living in the dark – people who would be given the tools to literally save their own lives. Will it ever happen? Who knows. But it’s a nice dream.
Until that dream is realized let’s continue to pass along information and encourage testing. Because until the time that Celiac panels become a regular practice, we need to focus on helping one person at a time.