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Developing coping strategies to manage the symptoms of coeliac disease

No, it’s not all in your head. According to recent studies, what happens in the gut can affect neurological and psychological function.

If you have Coeliac disease, you may think it’s just a gastrointestinal disorder. However, medical experts are beginning to understand the disease causes autoimmune enteropathy, which may present symptoms in any organ or tissue of the body.

Have you been misdiagnosed?

Some people with the genetic predisposition to develop CD have been incorrectly diagnosed with neurological issues. Ataxia (unsteadiness or struggling with coordination), regular headaches, and feeling unusual, tingling or pins-and-needles sensations, even seizures, maybe be misinterpreted as other health conditions. However, they can all be symptoms of someone with Coeliac disease being glutened (accidentally ingesting gluten).

Many of those with CD suffer for years without an accurate diagnosis. Additionally, even if they are correctly diagnosed, if they ingest gluten it may still affect their ability to work, read, write, and even drive.

Are all the symptoms physical?

No. Just because one person experiences one symptom, it doesn’t mean it’s the same symptom everyone will experience. However, anxiety, fatigue, and depression are commonly reported issues amongst Coeliac disease patients. This happens when the gut is unable to absorb certain nutrients essential to proper functioning of organs. Damaged villi (those small, small, finger-like structures in the small intestine), cannot properly process vitamins such as Vitamin B, B6, B12, Folate, Iron, and Calcium.

Whilst it is possible to live a full, rich life with Coeliac disease, it is a chronic illness and it means a strict gluten free diet must be adhered to. This can be a lot to process after a diagnosis, as life may suddenly change overnight. What used to be an easy decision, such as grabbing a bite to eat, may turn into feeling like a burden to friends and family. The need to constantly explain what CD is may be emotionally exhausting for some, creating a feeling of social isolation.

For others, it may manifest as impatience or grumpiness, separation anxiety, or even anger outbursts in children.

Consequently, it has been shown that over a third of those with CD suffer from depression. Futhermore, 17% have anxiety disorder.

What can I do?

Don’t despair. While the path may be long and is different for everyone, you are not alone, and there is help and solutions at your fingertips.

Contact a professional

If you are experiencing depression or anxiety, having mood swings, or low energy, don’t hesitate to seek support from your doctor. They are there to provide a range of options for you. You may also wish to access a support service such as Anxiety Line (0800 269 4389), or Depression Helpline (0800 111 757). You may be surprised at how much better you feel to just talk to someone.

Adhere to a gluten free diet

If you have been diagnosed with or suspect you have Coeliac disease, your best bet is to stay gluten free. To date, the only treatment for CD is an adherence to a lifelong diet free of gluten. This means avoiding all forms of wheat, rye, oats and barley.

Whilst this may be overwhelming, you’ll be encouraged to know that as knowledge about CD spreads, restaurants, brands, and people are educating themselves. This means there are more options out there for people who have Coeliac disease.

Blogger Maria Foy from Happy Mum, Happy Child, states, “When I realized it was gluten that was contributing to my negative mental health, it was quite the revelation.”

Foy goes on to say, “When I’m eating well, I feel on track. I feel like my normal self. I feel as though my thoughts are my own. I don’t doubt any decisions I make, and I worry a heck of a lot less.”

However, it’s important to be patient, especially when adjusting to a big lifestyle change. You may not get it right all the time, and you may find that you still have days where you feel foggy. During those times, remember to be kind to yourself.

Developing positive coping strategies

Along the same vein, it’s important to consider what coping strategies work best for you. You may try:

  • Taking a moment to breathe deeply and slowly to help you relax, especially if you become overwhelmed by a situation.
  • Engage in physical activity. Walking, swimming, or yoga may help you destress.
  • Spend time with family and friends, enjoying hobbies or even just relaxing.
  • Talk to friends and family about how you’re feeling. Even if they can’t offer the perfect solution, you may find your problems are smaller once you’re not holding them inside.
  • Connect with others with CD by becoming a member of Coeliac New Zealand. You are not alone, and this website is a resource for the latest research, support groups, recipes, and the Coeliac Link magazine https://www.coeliac.org.nz/get-involved/become-a-member

Most importantly, remember your illness does not define you. If you are concerned about your psychological wellbeing, you are not alone. Many of those suffering from Coeliac disease are in the same boat. There are things that can be done to improve your situation, and there are services who are happy to provide support. You can still live a full, rewarding life despite your diagnosis.