Ursula Saqui, PhD shares her tips for overcoming and accepting a diagnosis of a gluten-related disorder.
By Ursula Saqui, PhD
All I could do is cry after my diagnosis.
I often listen to people's stories of how they were diagnosed with a gluten-related disorder and the aftermath. While everyone's story is uniquely his or her own, I see many similarities across the stories in that they contain some or all of the five stages of grief developed by Elisabeth Kübler-Ross: denial, anger, bargaining, depression, and acceptance. Experiencing this diagnosis as grief makes sense given the many things people feel they lose such as choice, their social life, and favorite foods.
Kübler-Ross and David Kessler state in their book On Grief and Grieving, their five-stage framework was not "to help tuck messy emotions into neat packages" but they saw the stages as "tools to help us frame and identify what we may be feeling" (p. 7).
Similar to the authors, I don't want to put your experience into a box. Rather, I hope to show you examples of what others have felt so you won't be surprised, but rather validated, if and when you feel a similar way.
Denial: One of the first things you may experience especially after a long journey filled with many unknowns and incorrect diagnoses.
How can they be sure it is celiac disease? They have been wrong about everything else.
I can't be suffering from celiac disease. I don’t understand the test results my doctor has shared with me and I don't have most of the symptoms that are listed.
Anger: This emotion may be directed at everyone, a few specific people, or even at yourself.
It is really hard not to eat gluten; it's everywhere. I'm so mad that they have to put wheat in everything!
So much of my life was ruined just because the doctors didn’t diagnosis me correctly.
Bargaining: Kübler-Ross and Kessler call bargaining our attempt to find a "temporary truce."
If I only eat one bite every once in a while, I’ll be fine.
What if I just have this one last cheat day and then I'll go gluten-free? I promise!
Depression: An appropriate response to your diagnosis, which often means significant changes and losses in your life.
Do I have to eat salads the rest of my life? I miss my old foods.
No one around me seems to get what I'm going through and I feel very alone.
Acceptance: Not necessarily being 100% okay with your diagnosis but a willingness to move forward.
If I have to give up my favorite foods to feel better, I am willing to do it even if I don't like it.
My diagnosis created an opportunity for me to eat healthier and try new foods.
But the framework of Kübler-Ross doesn’t capture everything. As I listen to stories, I also hear the following.
Thankfulness: A sense of gratitude for what has come out of the diagnosis.
I am grateful for my diagnosis as my health has significantly improved.
I am thankful for my diagnosis because it has made me a better cook.
All comments are paraphrased to preserve anonymity.
Kübler-Ross, E. & Kessler, D. (2005). On Grief and Grieving. New York: Scribner.
Ursula Saqui, PhD, is a psychotherapist and President of Saqui Research LLC, a consulting firm dedicated to giving people and organizations the information they need to make better decisions.