1 in 100 people worldwide are affected by celiac disease. For many, the journey to diagnosis is long and complex. Celiac disease can present with more than 200 signs and symptoms, and it can sometimes mimic other conditions because it impacts multiple body systems. The neurological and psychiatric symptoms that can occur in untreated celiac disease can sometimes overlap with those of psychiatric illnesses, including:
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- Mood changes
- Anxiety
- Fatigue
- Difficulty concentrating
- Sleep difficulties
- Decreased appetite
Even after diagnosis, many of these symptoms may persist. Individuals must also navigate the challenges of managing a chronic illness, including lifelong adherence to a strict gluten-free diet. This quote from one celiac disease patient serves to highlight the experience of an estimated 3 million Americans affected by celiac disease: “If you’re someone with celiac disease, the only option for you is to adapt to a world that wasn’t made for you.”
Experts and Advocates Are Here to Support You
From anxiety and depression to brain fog and mood changes, the celiac disease journey isn’t simple, even after diagnosis. Coming to terms with a chronic illness and adjusting to a lifelong strict gluten-free diet can feel overwhelming and isolating. Mental health is an important part of overall health and wellness.
Here are a few insights from celiac disease experts at Children’s National Hospital in Washington, DC.
Give yourself permission to grieve. A celiac diagnosis can bring up real loss — of foods, traditions, spontaneity — and that’s valid. There’s also a steep learning curve that can feel overwhelming at first. Be gentle with yourself as you learn, and remember: there’s no one ‘right’ way to live with celiac. Over time, you’ll find what works best for you — and that version of life can still be full, joyful, and free. Start with finding that one tasty gluten free snack and enjoy it in your favorite place with your favorite people. — Geraldine Méndez-González, Psychology Trainee and Research Assistant, Children’s National Hospital
Try to find your personal balance of protecting your health while also living and enjoying your life. People with celiac disease can work, travel, play, and achieve just about whatever they strive for. It might just take some extra planning ahead or it might look a little different than someone who doesn’t follow a special diet, but it is still attainable. This takes practice and can shift over time, and that’s okay. — Dr. Shayna Coburn, Children’s National Hospital
Don’t believe everything you see on social media about the gluten-free diet for celiac disease. There is a lot of misinformation out there that can lead to unnecessary confusion and anxiety. Try to find a respected, unbiased expert to fact-check your questions (that doesn’t include bloggers or for-profit business owners who charge money for their information). — Kate Raber, Clinic Coordinator and Education Specialist, Children’s National Hospital
When Worry Turns Into Something More
When you have celiac disease, it is very normal to feel worried and stressed about food, especially in restaurants, social gatherings, or travel plans. But according to Monique Germone, PhD, BCBA Colorado Center for Celiac Disease, there are a few “warning signs” that may indicate it’s time to seek mental health support, including:
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- Worrying about gluten exposure is expected — but it’s concerning if it leads someone to avoid social gatherings altogether.
- Feeling down because you can no longer eat the same things you used to is typical; it’s a concern if the thoughts and feelings are hard to shake off and they persist for more days than not.
- If these things are getting in the way of life, school or work, being with friends or family, it could be a good idea to reach out for some support.
Finding mental health support can be challenging, but you don’t have to navigate it alone. Many celiac disease centers now offer integrated mental health services, and the Celiac Disease Foundation’s Healthcare Provider Directory includes licensed mental health professionals who understand the unique challenges of living with celiac disease.
If you or someone you know is struggling or in need of urgent support, call/text 988.
The Celiac Disease Foundation’s mission is to advance diagnosis, treatment, and care for the millions affected by this genetic autoimmune disease through strategic investments in research, advocacy, and education. We strive for a future where all individuals with celiac disease have access to the resources and support they need to thrive. In recognition of World Mental Health Day, we reaffirm our commitment to advancing care that supports every aspect of life with celiac disease, including mental and emotional health. Recognizing and addressing the psychological impact of this disease is an essential part of improving quality of life and long-term health outcomes.