It has not been the easiest of transitions since November 2015. My endoscopy (procedure which is gold standard to diagnose Celiac disease) was a week before Thanksgiving, so it brought up emotions surrounding food and family. Despite my expertise in educating and counseling patients and professionals on the gluten-free diet, it was a challenge to find a balance and minimize anxiety surrounding social situations.
I was shocked, mad, sad, depressed, anxious, in denial, and had to mourn the loss of gluten in my life. GLUTEN was like a friend or family member, around most of my life. It wasn’t easy to say goodbye to all the crispy, fluffy, flaky textures of gluten. Sure, I ate many gluten-free meals over the past decade as a Registered Dietitian Nutritionist specializing in Celiac disease, BUT never intentionally said “I am going to eat gluten-free today or for the next month” before being diagnosed.
Please know I realize things could be worse; it could have been cancer or a worse prognosis! Regardless, moving forward I knew this was a lifelong, strict diet for the rest of my life, no fad diet! It was not easy saying goodbye to Pequod’s or Bari sandwiches, not to mention the yearly stop for White Castles (eek, I know!) or a croissant from Medici.
These intense feelings reminded me of the work I learned about while in Prague for the International Celiac Disease Symposium in the summer of 2015. I met Justine Dowd, an amazing PhD health psychologist, who also has Celiac disease. She is a Canadian Institutes of Health Research funded post-doc fellow at the University of Calgary, studying psychosocial strategies to help effectively manage Celiac disease. Justine is developing evidence-based strategies to improve quality of life and adherence to a gluten-free diet among people living with Celiac disease.
Justine taught me about the concept of self-compassion. For Celiac disease, practicing self-compassion can help one follow the gluten-free diet and manage social situations. In over a decade of working with patients who have GI disorders, I have tried to put myself in their shoes when counseling and educating on dietary and behavioral modifications. On the flip side, I am overly critical of myself and have not been as loving, patient, or kind to myself as I would be with my patients. It was time to take a step back and evaluate how I was adapting to the diet.
There were many times I would cry walking past a food truck or simply thinking about eating out when initially diagnosed. It’s totally normal to have these overwhelming feelings. Typically it can take months to a year to fully adapt to the gluten-free diet. There are social, emotional and physical changes that affect the choices of someone with Celiac disease.
Being mindful, practicing patience, kindness and understanding during rough times can help one adapt to emotional roller coasters, and lead to a happier life.
Here are some ways to utilize self-compassion and mindfulness in your busy life. There is an app called Happify http://www.happify.com/ and also Headspace http://https://www.headspace.com/ that I like to use to “check in” with myself. Another excellent site by Kristin Neff, PhD, an expert on self-compassion http://self-compassion.org/ Her site contains videos, exercises and guided meditations.
I helped develop the nutrition portion of this online study by Justine’s team in Calgary, Canada entitled POWER-C: Promoting Optimal Well-being, Education and Regulation of Celiac Disease. If you are interested in being part of an online study, email the team at firstname.lastname@example.org
In the end, I survived and am thriving on the gluten-free diet! My hope is to help others find their favorite replacements for those gluten-laden foods, and navigate the challenges of eating out. Most of all, I hope to educate and motivate those who want to learn more about celiac disease and the gluten-free diet.
Dowd A.J., Tamminen K.A., Jung M.E., Case S., McEwan D., Beauchamp M.R. (2014) Motives for adherence to a gluten-free diet: a qualitative investigation involving adults with coeliac disease. J Hum Nutr Diet. 27, 542–549 doi: 10.1111/jhn.12203