Will my friends be upset with me if I skip the party? I hope there’s a bathroom nearby when I get there. I’m really not in the mood to hear comments about my weight. I can’t afford to miss another day of work. Will this ever end?
These thoughts may sounds dramatic or even bizarre, but for someone struggling with gluten intolerance or full-blown celiac disease, they are all too familiar. The emotional distress that comes with the physical complexities of illness—in this case, gluten intolerance—is significant and not always well-understood.
Megan Clements of Blue Bell can speak to this reality and the subsequent mental and emotional anguish these thoughts and experiences have caused: “There would be days where I thought doctors would never figure out what was happening to my body. I felt like I was experiencing the worst possible stomach virus over and over again. The events I have had to miss out on during the past six years (especially big events in people’s lives who are so important to me), as a result of mistaken diagnoses including irritable bowel syndrome (IBS) or stress, started to take a toll on me, and my relationships.”
Gluten intolerance and celiac disease can have a considerable impact on the dynamics within friendships. One symptom of celiac, for example, is weight loss. When undiagnosed, it can be hard enough for the person struggling with symptoms to identify what’s wrong, let alone for others to relate to the person struggling instead thinking they are simply “too skinny” and need to eat more (fat talk, anyone?). At the same time, going “gluten free” is a trendy topic right now and at times viewed as a fad diet. As a result, someone’s shift to a gluten-free lifestyle may not always be taken seriously, further invalidating the distressing emotional and mental experiences he or she has been through and continues to go through.
The good news? There’s hope. After years of tests, doctor visits and some helpful and not-so-helpful advice from well-intentioned friends and family, there is finally a light at the end of the tunnel for Megan: She was very recently diagnosed as gluten intolerant. Megan notes, “Even though this diagnosis is recent, I can already feel a difference in my body. I knew this was more than stress or IBS … something wasn’t right. I stopped listening to the wrong people, started listening to myself, and gained support from true friends and family, especially my husband, who never left my side. It may seem extreme, but this type of intolerance can take over your life, and the only way to diagnose it is to be proactive. Here I am with results.” She says that reactions from friends and family have been varied, ranging from complete support from most to others who have only been concerned about her weight loss and not about her overall well-being.
Above all else, Megan has a message for those who are either struggling with symptoms of gluten intolerance or who have recently been diagnosed with celiac disease: you are not alone! “Read lots of positive blogs, and do your research,” she says. “Don’t let your symptoms go undiagnosed just because people—and yes, doctors, too—tell you there is no cure. Reach out to the best possible physician to help you through it, and only let positive people in your life who will support you.”
Dana Careless is a Licensed Professional Counselor in Pennsylvania with a Masters Degree in Counseling and Clinical Health Psychology. She is also a certified indoor cycling instructor and founder of A Therapeutic Revolution, where you can burn calories while busting stress through a wellness indoor cycling class, one revolution at a time.