This morning, I came across a heartbreaking story of a woman who died from complications of celiac disease. She had ignored her symptoms and didn't adhere to a GF diet.
She, like all of us, ate wheat products for a portion of her life. Her body loved wheat. I mean, wheat products were yummy!
When she was diagnosed with Celiac, not only was it during a time when gluten free food was very sparse, she had difficulty giving up what she loved: foods with wheat ingredients.
She suffered the consequences of not adhering to a GF diet, as her liver gave out on her. She also had an enlarged stomach and had gained 30 pounds. She succumbed to her complications, and her daughter has spoken about her mother's health issues.
She, like all of us, are hoping for more awareness to be raised. We as Celiacs need more support. All of the men and women who have died from Celiac Disease will have died in vain if things don't change now.
The whole world knows what gluten free is. Unfortunately, not everyone knows about Celiac Disease. Celiac Disease may seem harmless to the uneducated eye, and you may think the woman I spoke about could have prevented her own death if she adhered to a gluten free diet. Guys, it is not that easy.
First off, Celiac Disease is not harmless. People can die from the illness. Even if you get diagnosed late in life, the damage could already be done. Or, you could be diagnosed early and have a really severe case. Regardless of the situation, people can and have died from the disease.
Secondly, I understand the woman in the story, because my grandmother had a similar situation. She was diagnosed during a time when gluten free food was not really available unless you made EVERYTHING from scratch (including grinding up your own grains, and driving 4 hours to another state to get those special grains. My grandfather did that every week). There was no support, and you also wanted to avoid looking like you were nuts in front of ignorant people, so you didn't tell anyone. Also, back then you didn't know ANYONE who had the disease. It was considered extremely rare, and in the medical world, it was also considered to be a childhood disease. When the store that my grandfather bought grains from closed, my grandmother had no choice but to go back to regular food. She did it in order to survive, but what she was eating was slowly killing her. I watched all the hard work she did on rebuilding her health completely go away. She dropped a lot of weight, she shrunk in height, she developed a large hump on her back, and she lost the ability to do most of her activities of daily living (washing, toileting, dressing, walking, etc).
Without proper education, support, awareness, and food, new Celiacs return to their former ways of eating. It's survival mode, despite the fact that the gluten foods are slowly killing them.
Also, people become embarrassed when they are diagnosed with Celiac Disease. I remember how hard it was for me. Grocery shopping sucked, going out to eat barely happened, and forget about dating. A guy finds out you're gluten free because you're sick, it's game over (I still deal with it to this day. Another reason why awareness needs to be brought out to the mainstream). We need to tell the world that this is a real condition, and it should be taken as seriously as the other diseases out there.
I think about the people who have yet to be diagnosed. When they find out, they will find themselves in a world that doesn't care that you have Celiac disease. The world will see you as a "whining, entitled, trendy, crybaby." This is a problem that needs to stop now.
It starts with those of us who talk regularly about Celiac Disease. I'm not afraid of talking about it because I want to help others. I want to be the person I wish I had around when I was diagnosed.
To find out more about the woman in the story, click here
