After the Diagnosis: Coping with Celiac Disease and Gluten Sensitivity

[I think back to the myriad of feelings I experienced when first diagnosed with celiac.Shock (really, I have a “disease”, and what exactly is celiac?);Relief (finally, an answer to why I was unwell); Depression (thinking I would never eat my favorite foods again);Fear (afraid to eat anything for the first few weeks); and finally arriving at Gratefulness (diagnosis probably saved my life).Recently, after a very hectic day, I was surfing the net and happened upon Jen Johnson’s blog “Everyday Mindful”. At once, I began to feel a wave of calmness come over me, as I read through her posts “Opening Your Heart”; “Pause.Breathe.Listen”; & “Nurturing a Healthy Mind”, among others. I enjoyed her blog’s serene photographs of nature, many, if not all, were taken by Jen herself. In the article below, Jen offers advice to newly diagnosed celiacs/gluten-sensitive, though her tips will surely help anyone cope better during a particularly stressful or anxious time. Jen is a psychotherapist, mindfulness-based stress reduction teacher, yoga instructor (see complete bio below) and currently resides in Wilmington, North Carolina … Paula, CeliacCorner]

After the Diagnosis: Coping with Celiac Disease and Gluten Sensitivity

by Jen Johnson, MS, LPC, guest author

You’ve just been diagnosed with Celiac Disease or gluten sensitivity after years of feeling unwell. You’ve probably been told on more than one occasion that it’s all in your head or you’re just being trendy by being gluten-free. You may be feeling relieved, scared, angry, sad, or a host of other feelings as you try to navigate the complex world of gluten-free eating.

Following are 10 things you can do to cope more effectively on your journey from diagnosis to wellness:

1. Breathe. Remember that this too shall transform, and that as you become more knowledgeable, heal, and develop healthy coping skills, you’re likely to feel much less overwhelmed.
2. Take responsibility for your own well-being. Don’t assume that your healthcare provider will tell you everything that you need to know. Read all that you can find about Celiac Disease and gluten sensitivity, and learn what you need to know to move toward healing, including how to protect yourself from further accidental gluten exposure. Read about what you can eat, and keep up with the latest research, as this is a continually evolving topic with ongoing new developments.
3. Practice extreme self-care. Remember that your body has likely experienced injury from eating gluten, and it needs time and support to heal. Commit to following a gluten-free diet without exception, as ingesting even a small amount can cause intestinal inflammation and/or villous atrophy of your small intestine. If you need help sticking to the diet, seek help from an experienced therapist who can teach you strategies strengthening your willpower and working through any issues, such as unresolved anger or self-sabotage patterns that keep you from taking good care of yourself. Learn effective ways to reduce stress. Get adequate sleep and exercise.
4. Assemble a strong team of experienced professionals who are knowledgeable about Celiac Disease and gluten sensitivity—Gastroenterologist, Primary Healthcare Provider, Dietician, Psychotherapist, and Alternative Healthcare Providers if that resonates for you. Only choose healthcare providers who treat you with kindness, compassion, and respect. Connect with support communities locally or online.
5. Create balance in your life. It’s easy to feel consumed by your illness. Try not to allow thoughts about your illness to consume you, as this may exacerbate any symptoms of anxiety and depression. Focus time every day on what is going well in your life. Practice expressing gratitude. Try to incline your mind to the positive by noticing something beautiful or pleasurable in your world every day, and then savor the experience—birdsong, a beautiful blue sky, flowers, a tasty bite of healthy food, a drink of cold water, etc. Pay attention to how it feels in your body, mind, and heart to really take in this experience. Then recall the experience 4-6 times during the day.
6. Transform your experience with the illness by writing about it. Dealing with any illness can feel chaotic, and writing can help to make order from the chaos. Research shows that writing about difficult experiences for 20 minutes a day for four days can help to decrease your reactivity to the experience. Write about what it feels like to have this illness. Write about the ways in which it has impacted your life in difficult ways. Now write about how it may impact your life in positive ways.
7. Practice mindfulness meditation. Studies show that Mindfulness-Based Stress Reduction (MBSR) can reduce the physical and psychological symptoms of a number of medical conditions and results in increased feelings of peace and well-being. Studies also show that stress reduction can have a positive therapeutic effect for people with autoimmune disorders. Mindfulness is awareness of the present moment without judgment. Through training your attention to stay in the present moment, you can stop engaging in regretting the past or worrying about the future, thus increasing feelings of peace and well-being. When you’re aware of the present moment, you have the power to respond rather than react and can cope more effectively with difficult thoughts or feelings.
8. Develop assertiveness skills. You’re going to need them to cope with social situations related to your illness! When you’re friends insist that surely you can have just one tiny piece of chocolate cake, the waitress says the croutons are already on the salad but you can pick them off, or you’re asking a chef questions about cross-contamination, you’re going to need to act on your own behalf by asserting your needs.
9. Transform your illness into an opportunity to commit to healthier lifestyle habits. Avoid falling prey to the habit of replacing your old junk food with gluten-free junk food. I love the photo of the kiwi on CeliacCorner.com with the caption that reads, “All plain fruits and vegetables are gluten free.” Your intestines have likely been injured or inflamed from this illness. Don’t cause them further stress by loading them up with junk food. Take this opportunity to develop healthy eating habits, and follow the recommendations above for self-care.
10. If you continue to feel unwell, there’s still hope. It may take time and further treatment to feel better physically or for the anxiety and depression to resolve. If you’ve been ill for a long time, you may have secondary medical issues that need to be addressed. Keep working toward wellness! Anxiety and depression resolve for some with starting a gluten-free diet, but for others, they continue to be an issue that may later resolve after addressing medical complications or participation in psychotherapy. Anxiety and depression symptoms may improve with Mindfulness-Based Stress Reduction, Mindfulness-Based Psychotherapy, or Cognitive Behavioral Therapy.

Warm wishes on your journey toward well-being!

Jen Johnson, MS, LPC is a psychotherapist and Mindfulness-Based Stress Reduction teacher offering mind-body wellness counseling and coaching for people with chronic illness, stress, anxiety, depression, and grief/loss. She provides individual consultation by telephone and Skype and offers distance learning workshops in Mindfulness Based Stress Reduction (MBSR) and Mindful Writing: Healing from Illness. Jen is available for writing assignments and speaking engagements related to mindfulness, stress reduction, coping with chronic illness, and wellness.

 Thanks Jen!

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