Submitted by Janelle Vincent, RD, IOC Dipl Sports Nutr, CSSD
My name is Janelle Vincent, and I have Celiac Disease. I never thought I would say those words. Actually, after finishing my university degree, I vowed to never hear the words Celiac Disease ever again...
Let’s rewind back to January 2011, when it all started. I am one of those with Celiac Disease (CD) who had never experienced symptoms in the past, apart from re-occurring low iron. One night, I woke up with excruciating lower abdominal pain, ten minutes later, it was gone. The next night, same thing, and the next and the next. The pain would come on exactly six hours after my supper meal and last ten minutes.
I was convinced that there was something wrong with my digestive system and after ten days of pain, made an appointment with my doctor. She palpated my stomach, sent a gastroenterology referral and told me to increase my fibre intake. I bought wheat bran.
To my surprise, the stomach noises started following meals, was extremely bloated, and had constant stomach pain. My first thought was: Janelle, you’re a Dietitian, you should have known that when increasing fibre, you need to increase your fluid intake. And so off I went with a new goal of drinking more fluids. The symptoms continued.
Three months later (April 2011), I met with the specialist. He asked a few questions and sent me off for blood work. His nurse called a month later, mentioning that I was Vitamin D deficient.
My first follow-up with the specialist came three months following the initial appointment (July 2011), where I was told that I also tested positive for...Celiac Disease. What??? I was then told to continue eating gluten until the biopsy was completed.
Oct 2011 could not come any sooner. I think the worse part of my journey was knowing I had the CD, but had to continue suffering. Following the biopsy (which I insisted on to ensure that there wasn’t any other damage), I called the specialist, got the go-ahead to change my diet, and in Jan 2012, started to eating gluten free (GF).
The final diagnosis came in March 2012 when I reviewed the biopsy with the specialist. Since then, I have been GF. I remember my first yearly follow-up where the specialist asked if I had cheated from my GF diet. I looked at him and replied NO! His response was, that’s right, you’re a Dietitian, you wouldn’t cheat. But that’s the thing, Dietitian or not, knowing how I physically feel when being “glutened” (yes, that’s a word), I have no desire to eat foods containing gluten. These aren’t seen as forbidden foods, just foods that I have zero interest in.
I regularly have people tell me: you have CD, ohhhh that sucks. The way I see it, there are two ways to look at this diagnosis, feel angry and sorry for myself, or embrace it. I’m a Dietitian, I have a food disease, things could be worse. I have no medications to take, no injections, nothing; all I have to do is slightly modify my food choices. And, with everything that is now available, there is really no product that I haven’t been able to find.
There definitely are still moments of anxiety, mostly during travelling, when eating at a restaurant (will they understand this isn’t a ‘diet’ but a “must”), and when being invited to dine at others’ homes (do they know about cross-contamination and hidden sources of gluten). My type A personality has shinned in these situations and my extreme planning skills have come in handy, as I always leave the house with snacks and/or food in my bag.
This disease has helped me better appreciate what those with severe allergies live with, and also better work with and understand the clients that I see in my daily work. In the end, if getting CD is the worse that happens, then I will be able to live happily ever (gluten free) after!