People of all ages can have coeliac disease and it is common in countries that have a high gluten intake in the diet. International research indicates there could be up to 100,000 people in our NZ team of 5 million with coeliac disease and of those 30,000 are likely to be children under the age of 18. However, a large proportion of these people are unaware they have the condition despite it being a hereditary condition, as environmental factors also play an important role in the onset of the disease.

Being diagnosed with a chronic illness like coeliac disease can affect a person psychologically. The degree of impact is dependent on the person's history, environment, personality, and resilience. When a person is first diagnosed, they may feel they are on a roller coaster of emotions - feeling several emotions like the stages of grief - denial disbelief and shock. Sadness and depression are common emotions when they realise, the changes they are going to have to make. Others may feel guilt, wondering if they could have done something to prevent the illness or even anger that they made poor choices, knowingly.

Staying optimistic about having coeliac disease can be hard at first, when food is a part of our daily life and you are now having to think about removing some of your favourite foods from your diet, worrying about the additional cost or feeling anxious about eating out. Research shows that many people with coeliac disease develop anxiety around food and social situations. It's important that we learn how to build resiliency and learn self-management techniques when adapting to a coeliac lifestyle. Most people go through these types of emotions and go through a similar process of making sense of it all. Being mindful of how you are feeling and doing something about it like calling a friend or family member if you are feeling angry or frustrated. Seeking support from those who care about you including health professionals or someone in the coeliac community to get support will help strengthen your resilience.

We recently asked some of our members to share their stories of living with coeliac disease. This is what their experience has been.

Sandra Williams..."My coeliac journey started about 11 years ago, but unfortunately, I was not diagnosed until about 4 years ago.  I love food and was gutted by this diagnosis.  However, I have worked really hard and stuck adamantly to a GF diet. It took 4 years but finally, my blood tests are really good. My hardest moment was when my son was also diagnosed with coeliac disease - I felt so guilty."

Judith  Starke..."My journey started with a biopsy and being told you have coeliac disease.   Had no idea what he was talking about.   I thought  I was going through these tests to prove to myself and the Doctor that  I didn't have bowel cancer.   Having had a brother recently die from bowel cancer and struggling to get my iron levels up and failing I didn't look any further than that possibility. Apparently, I was one of the silent coeliac not having obvious symptoms although when you go looking the symptoms were definitely there.   Bloating, brain fog,  food passing through too quickly after a meal etc.  Was a while before  I saw the obvious health benefits of eating gluten-free but now 8 plus years on it's just part of my life.

Laura Gilding..."My coeliac journey started when I was about 1 year old. I became very unwell with vomiting, diarrhoea, stunted growth, a pot belly, and extreme lethargy. I was finally diagnosed after a year - it took 2 Crosby capsule biopsies (the first one fell off so they had to repeat it!). I was a ‘textbook’ case in my appearance and symptoms and I was used as a teaching case back in the UK. As soon as I went GF my growth started to catch up and I was a happier child. I’m now 40. I know nothing other than eating gf and I’m grateful for that. Things are much easier than they used to be due to increased awareness and products, but it’s still hard at times. At least bread doesn’t come in tins anymore! I now help diagnose people myself in my work as a GP and I try to educate my colleagues too."

Coeliac disease is not an allergy or an intolerance, it is an autoimmune disease. People with coeliac disease have a permanent intestinal reaction to dietary gluten (a protein found in wheat, rye, barley, and oats). Gluten damages the lining of your small bowel (also called the small intestine) causing inflammation for those with coeliac disease, making it difficult for your body to absorb food and nutrients properly. If you are concerned you might have coeliac disease contact a health professional to get tested.

Please contact admin@coeliac.org.nz if you would like to share your story.