Celiac disease is a serious genetic autoimmune disease, one currently with no cure. Yet, I always say the day I was diagnosed was a gift. It’s the day I got my life back.
My patient advocacy organization Beyond Celiac and I work diligently to bring awareness to and eradicate the challenges of celiac disease. Studies show continuing gut damage for many, even on the gluten-free diet, and the lack of research funding. But for a few moments, let me back up to basics. Let’s take stock of the important positives that emanate simply from receiving a diagnosis.
Before my diagnosis, I felt very weak and was convinced I had cancer that doctors wouldn’t find in time. I had been through the devastating loss of multiple miscarriages and a full-term stillbirth.
I had seen almost two dozen doctors and had no answers. Until, finally, I was given a diagnosis: celiac disease.
When I changed my diet and stopped eating gluten, my symptoms cleared up. Slowly, I regained my health. Today, I am stronger than I have ever been. And I am not alone. For many of my fellow celiac disease community members, a celiac diagnosis is a relief.
Not long ago, we had a conversation about this with Beyond Celiac followers on Facebook, with members pointing out the negative and positive aspects of getting a celiac disease diagnosis. But overwhelmingly, we heard about how a diagnosis was life-changing in a good way.
Bonnie, for example, commented that after years of being told it was “all in her head,” getting a celiac disease diagnosis was the light at the end of the tunnel. She felt happy – by following a strict gluten-free diet, she was able end her suffering and not feel ill every day. She finally had an answer and didn’t feel like she was alone.
Recovered from Anemia, Brain Fog
There’s also Claire, who spent more than 20 years battling anemia and mystery bouts of diarrhea. Doctors said her symptoms were attributed to being female and vegetarian. After finally receiving an official celiac disease diagnosis, her red blood cell count went back to normal for the first time since her 20s. Her brain fog lifted and she stopped having to miss work for unexplained illness. Claire began feeling herself again after decades of just being “off,” and assuming this was how everyone felt. She found her health again.
Another community member found that celiac diagnosis meant a healthy pregnancy. Stephanie tested positive for the disease five months before she got pregnant. It was difficult to maintain a strict gluten-free diet – she noted the daily urge to hit the fast-food drive-thru or call the pizza parlor. But in the end, Stephanie felt like she was “one of the lucky ones who got a fairly quick diagnosis and can now enjoy being healthy again!”
Stacey says she stopped “being so angry” and has become a much better cook since her celiac diagnosis.
Many community members commented on the impact the celiac diagnosis had on their diet. “Yes, I wish I didn’t have to be so careful, and yes I feel frustrated when I go out, but this has overall affected me positively,” says Kelly.
Cherishing It, Maintaining It
If you ask me today what good health looks like, thanks to the diagnosis and strict adherence to a gluten-free diet, I’m so pleased to say that I actually know what it means to be healthy.
I don’t take it for granted either: I cherish it and strive hard to maintain it. And despite that adherence, there are times when I get glutened and get sick. And, there are times when I get frustrated, especially when traveling for work and having to plan ahead and always know where to eat.
So next time you may be feeling down about your celiac disease, or wondering if you should even go through the struggles it may take to receive an official diagnosis, remember that there is a silver lining to knowing for certain.
Healthy living can be achieved and we can become well enough to fight together to change the burdens of celiac disease into the world that I know is possible: At Beyond Celiac, we envision a world where people with celiac disease can eat without fear, a world where there is a cure for this serious disease. It’s what we call a world beyond celiac.
Alice Bast is CEO of Beyond Celiac, the national organization working on behalf of the celiac patient community. Learn more at BeyondCeliac.org.