The Mental Toll of Gluten-Free Diets

Dealing with the anxiety and stigma of going gluten-free can sometimes be as vexing as the symptoms themselves.

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.”

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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.

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  • http://www.gottamakethecupcakes.com Michelle

    Dana what a very well written article. I work with Barb and I have listened to the stories and felt Barbs concern for Meg over this illness. I am so happy that she found a good Dr. who diagnosed her and finally she will be able to understand and deal with her gluten intolerance. Because of Meg and a few other friends who have this intolerance I have decide to add gluten free cupcakes to my cupcake business menu. No reason they can’t enjoy yummy treats as well :) Look forward to reading more of your articles.

  • http://www.facebook.com/ATherapeuticRevolution Dana S. Careless

    Michelle, Thanks so much for your comments. I am also so happy for Megan and so proud of her for sharing her story so others know that they are not alone. That’s exciting about your gluten-free cupcakes – I’d love to try one! Take care. -Dana

  • http://www.celiaccentral.org Alicia_NFCA

    It’s unfortunate that not everyone will understand the medical necessity of the gluten-free diet, but finally feeling better is what really matters. Thanks for sharing this well-written article on the emotional aspect of living the gluten-free lifestyle!

    - Alicia
    National Foundation for Celiac Awareness

  • http://Comingsoon! Anne Marie Malfi

    Great article that I found myself nodding to as I read it. I too suffered for years, back and forth to doctors with no real direction or answers. I started working with a health coach and a natural path doctor and went through a series of tests to discover I had Celiac and candida – another inflammation condition that causes very similar symptoms and reactions like Celiac and gluten intolerance. Been on a path to healing for the last year and it inspired me to become a health coach so that I could pay forward the knowledge. So happy Megan has improved and hope this article inspires many others – great advice Megan!

  • Dana S. Careless

    Alicia and Anne Marie – thank you both for your feedback and comments. I really appreciate it and know others (including Megan) do, too. Have a great day! -Dana

  • Nancy

    I totally remember 3 different doctors telling me after numerous tests “there’s nothing wrong with you”. Finally, after 6 weeks of constant explosive vomiting, diarrhea, pain, jaundice, and skin flaking off in huge amounts, I went to an urgent care facility. The doctor there, whom I’d never seen before ordered an upper and lower GI from a specialist…guess what, celiac sprue! All of you celiacs out there know exactly what I’m talking about. It ticks me off even more when people accuse me of being self-diagnosed so I can have a “trendy” disease. No wonder most celiacs are snarky and bitter. I totally get it.

  • Dana S. Careless

    Nancy, thanks for sharing your experiences. Your feedback is so meaningful and I’m happy you’ve found the root of your symptoms. Take care. -Dana

  • Jensen

    Great article, I think a lot of people need to know its not a fad diet and truly effects people’s every day life. Knowledge and awareness is powerful!

  • Dana S. Careless

    Jensen, thanks for your feedback. I agree completely! -Dana