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Journey from Diagnosis to Gluten-Free Juggernaut

by on May 4, 2015

Introducing our first Celiac Awareness Month blogger, Ellen Bayens!

Ellen is the Founder and President of The Celiac Scene™, the go-to gluten-free resource for Victoria, Vancouver Island and the Gulf Islands. Referred to as a ‘Remarkable Celiac’ by the Canadian Celiac Association (CCA) , Ellen speaks first hand and with infectious humour about the challenges of the diet and how they can become the gateway to good health. As Past Vice-President of the Victoria Chapter (CCA) and ‘British Columbia’s Gluten-Free Ambassador,’ she has been featured in Gluten Free Living, Allergic Living and Delight Gluten Free magazines. Ellen is a frequent commentator on TV, radio and print as she shares her enthusiasm for gluten-free living with restaurants, retailers and industry experts keen to ‘Get Gluten Free Right.’ Here is Ellen’s “Journey from Diagnosis to Gluten-Free Juggernaut!”

The story begins with the Japanese occupation of Indonesia from 1942-45 when, as a Dutch citizen born in Java, my mother was interned for four years in a prisoner-of-war camp along with my grandmother and uncle. As a POW, she subsisted on meagre diet of rice and few vegetables before repatriating to the Netherlands and adopting a largely wheat-based diet. Instead of regaining weight, she began to lose even more. Her diagnosis with Hashimoto’s disease offered an explanation, as did her subsequent diagnosis of Diabetes Mellitus Type I and the complications thereof. Unfortunately, it would 40 more years before the disorder that likely plagued her since her teens – Celiac disease – would be identified. Like many who struggle for an explanation for and respite from symptoms, my mother paid a price for consuming gluten for 40 years, developing a form of Parkinsonism that robbed her of her mobility and ultimately, the digestive cancer that took her life.

Fast forward to my own diagnosis at the age of 45. Even with a history of Celiac disease in my family, I was unaware that I was pre-disposed to developing it myself. I was a healthy, physically fit and the happy mom to two fabulous children. A switch to a new GP and a complete physical revealed that my liver enzymes were alarmingly elevated. The doctor began to ask questions-How much alcohol did I drink? Was I a covert intravenous drug user? Could the protein shakes I consumed daily contain steroids? After two years of aspersions on my lifestyle and still in otherwise excellent health, I finally agreed to a liver biopsy to appease my concerned physician. During the procedure, and despite being guided by ultra-sound technology, the specialist inadvertently perforated my liver and retrieved cells from my small intestine that revealed the classic presentation of Celiac disease. Subsequent blood testing confirmed that I had the antibodies associated with this chronic auto-immune condition.

I could not turn the page fast enough! Not only did I have a diagnosis, I knew from my caring for my mother exactly how to effect a complete and permanent recovery. The gluten-free diet! My children and siblings undertook – and passed – pre-screening blood test recommended to family members of diagnosed celiacs. They are in great health today but are well aware that should they develop any of the more than 200 symptoms of associated with celiac disease or one or more of the autoimmunCeliac Scene Photo 1e
disorders that are known to co-occur with it, they need only mention their family’s medical history to enjoy their own expedited diagnosis.

In the ensuing 13 years since I turned that page, I have parlayed my passion for assisting others fortunate enough to be diagnosed – and the 97% of celiacs who never are. I am dedicated to empowering anyone and everyone who wants or needs it, with the information that exists within our community. Instead of looking back, I encourage others to look forward to renewed health, and a second chance to enjoy a great life – the gluten-free way!
For the very best information on Celiac Disease, Non-Celiac Gluten Sensitivity and the sister disease, ’ Dermatitis herpetiformis, I highly recommend by Shelley Case RD, ‘North America’s Gluten-Free Nutrition Expert’ as well as the excellent information made available at

Ellen Bayens


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