Where Are We – the Patients – in All of This?

October 18, 2016

Where Are We – the Patients – in All of This?

Beyond Celiac CEO Alice Bast challenges the gluten-free conversation in an effort to put the spotlight on celiac disease — not its treatment.


By Alice Bast, Beyond Celiac CEO

I lost my daughter to undiagnosed celiac disease. I was nearing the end of my third trimester when I could tell that something wasn’t right. I had been sick my entire pregnancy, which was completely different than my first. This was beyond morning sickness. It was uncontrollable diarrhea, migraines, tingling all across my skin and bone-deep fatigue. It ended with me giving birth to a stillborn little girl we named Emily.

By the end of my journey to diagnosis, I hadn’t just lost my daughter. I lost eight years of my life. As my teeth began cracking and I dropped to 105 pounds at 5’10”, I thought for sure that I was going to die. After eight years and 23 doctors, I was finally diagnosed with celiac disease – a serious genetic autoimmune disease.

Without a doubt, you’ve heard of the gluten-free diet. That’s the only existing way to manage celiac disease. When people with the disease ingest gluten, the body thinks it’s a foreign invader and launches an attack on the body, damaging healthy tissue and leading to malabsorption, among a host of other serious problems.

There are a lot of misconceptions about the gluten-free diet. It’s been touted as a weight loss diet and an overall healthier way of living. It’s possible to eat a balanced and healthy gluten-free diet, but when just a crumb of gluten is enough to launch a violent autoimmune attack on the body, it’s not exactly the best solution for celiac disease.

In a recent article published by Bloomberg , Dr. Alessio Fasano, member of the Beyond Celiac Scientific/Medical Advisory Council and Director at the Center for Celiac Research at Massachusetts General Hospital, pointed out that celebrities have played a role in perpetuating the myth that gluten-free is a weight loss diet. He was quoted as saying, “It’s not a lifestyle. The gluten-free diet is for medical necessity.”

And yet, the entire Bloombergarticle contributed to an ongoing conversation; to go gluten-free, or not to go gluten-free? Shouldn’t we be focusing on working together to raise awareness of the signs and symptoms, rather than rehashing the same gluten-free diet debate?


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