I invited Sanne Siska to share her celiac disease coping strategies with the Good For You Gluten Free community. Sanne is a licensed (LPCC) mental health counselor who specializes in trauma.
For many of us in the gluten-free community, a celiac disease or gluten intolerance diagnosis triggers grief, isolation, and embarrassment, all of which can weigh heavily on our emotional well-being.
Sanne offers five celiac disease coping strategies to help provide mental and emotional support to anyone struggling with the burden of this diagnosis.
Her strategies are timeless and have helped me cope with the many emotions and wounds opened by my celiac disease journey. I hope they help you too. -Jenny
5 Celiac Disease Coping Strategies
I’m Sanne Siska, a mental health counselor originally from Spain. I currently live and practice in Colorado. I have celiac disease and feel uniquely qualified to help the gluten-free community overcome the emotional struggles and burdens of the gluten-free lifestyle.
Below I share five coping strategies to help you view your gluten disorder as a vehicle for transformation and inner growth.
(1) Advocate For Yourself
One of the biggest lessons of celiac disease is learning to advocate for yourself. The disorder challenges you to prioritize your well-being to avoid an array of health consequences. You’re often forced to stand up and advocate for yourself, even when you don’t feel like it.
Most people with celiac disease or gluten intolerance realize that advocating for themselves is easier said than done. I’ve had clients who continue to eat gluten despite their diagnosis. They want to forget they saw the positive blood result or clear biopsy interpretation. They want to live a “normal” life. They feel that living in a state of denial is easier than having to explain themselves over and over again.
However, the problem with denial is that it works until it doesn’t. One of my clients, who didn’t express the seriousness of her gluten-free request to her server, ended up in the emergency room for nine hours on liquid IV after getting severely glutened. She describes this episode as her biggest lesson on the importance of standing up for herself.
Actively taking care of yourself, even if it makes you sad or embarrassed, is having compassion for yourself (which I’ll talk about next) and allows you to forge a beautiful and loving connection with who you are in your new skin.
(2) Go Easy On Yourself
A few years after my diagnosis, while traveling, I encountered an ad for rental bicycles that said, “Riding a bike is gluten free.” This sign made me sad because I felt like it was making fun of gluten-free people and subliminally telling us, “Don’t be so difficult.”
These subtle messages can feel incredibly invalidating, upsetting, and embarrassing. I’ll admit, the comment hurt me and made me feel sad.
I gave myself the time and space to acknowledge my sad feelings before employing self-compassion. My mantra to these subtle microaggressions became, “I am not my diagnosis. I did not cause this. I am not the problem. I deserve to be treated with respect.”
(3) Lean Into Others
On one of our first dates, my husband (then boyfriend) and I went to an Italian restaurant with good reviews on a celiac-friendly website. I talked to the waiter, and he assured me the food was gluten free. However, there was a clear indication that the meal had been prepared with a gluten-containing ingredient, so I could not eat it.
My boyfriend looked down at his plate, visibly upset. He ate his meal and avoided eye contact to hide his disappointment.
I could tell this was a real adjustment for him as he had never experienced this before. There was an unbreakable tension that had shifted from a romantic date to an awkward silence.
I looked at him and said, “I know this is hard for you. This is not how either of us envisioned our romantic date.” This acknowledgment prompted my boyfriend to acknowledge that he had hoped to treat me to a nice meal and was disappointed it didn’t go as planned.
This difficult experience brought us a new level of emotional intimacy. We faced disappointment together and were better for it in the end.
Lean into others – especially those who love and care for you most – to help you cope with the challenges you face and who take a “we are in this together” attitude. Celiac disease doesn’t just affect you but also affects those around you. Allow them to help and love you through all the ups and downs.
(4) Practice Acceptance
What happens when you prepare for success, but something out of your control foils your plan? While you may be tempted to brush it off as “no big deal” or as something you’re “used to,” the truth is a lack of acceptance will leave a lingering elephant in the room.
For example, when your server says she can’t accommodate gluten-free requests or when your portable gluten-detecting device displays a “Gluten Found” message, it’s okay to acknowledge and express disappointment.
However, the magic comes when we accept this disappointment, learn and adjust from it, and then bounce back to face another day. Such resiliency will help you grow and love yourself, warts and all. Think of it as an injured athlete reinventing himself after a life-changing injury; so, too, must you reinvent yourself after this life-changing diagnosis.
(5) Resolve, Don’t Blame
While it’s easy to blame others for not giving you a safe meal or for picking an unsafe restaurant, the truth is, blaming others will get you nowhere.
Instead of pushing down feelings of disappointment and becoming isolated in your bubble, look to resolve any unresolved emotions triggered by your newfound diet and life. Only when you seek resolution can you achieve actual growth.
Sometimes celiac disease can trigger repressed and unresolved childhood emotions. Maybe you were bullied in school? Or did you once feel food insecure or have an eating disorder? Perhaps your dad left you when you needed his support, and the isolation you experience now feels reminiscent of those childhood traumas. Consider working with a mental health professional to help you find a resolution.
About the Author
Sanne Siska is a licensed (LPCC) mental health therapist practicing in Boulder-Longmont, Colorado. She specializes in resolving past trauma and helping individuals heal from present-moment difficult situations to prevent trauma from developing.
Having celiac disease, Sanne is uniquely qualified to help people cope with gluten disorders and see their illness as a vehicle for transformation and inner growth. You can reach her through her website, Aspen Counseling Clinic.
Thanks for this! I wanted to add that because it’s a relatively new field, I was shocked when I found out there are GI Psychologists. These are trained mental health professionals who work exclusively with people who have chronic GI conditions, including celiac disease. I’ve been seeing someone for a few months and it’s been a really helpful experience talking with someone who understands the specifics of the diagnosis and the lifestyle. We once spent a session composing a text to a friend, asking about safe meal options at their wedding because I had been too embarrassed to bring it up to them. No insecurity or worry is too small. Don’t be afraid to reach out!