13th – 19th May 2019 is Coeliac awareness week and to mark this event, Steven – our Money Advice Officer – tells his story of how undiagnosed Coeliac Disease can have devastating consequences.
“I’ll never forget the moment I found out my dad had cancer. It was a Tuesday evening and I was alone in the house when my mum called. Dad’s blood test results had come back from the specialist haematology unit. It was cancer. It was an extremely rare type of cancer called Enteropathy-Associated T-Cell Lymphoma. As soon as I put the phone down I took to Google to get a better understanding of this type of lymphoma. The prognosis wasn’t good – average life expectancy after diagnosis was only 10 months.
I kept reading. I found out that this type of lymphoma is linked with Coeliac Disease because it affects the same part of the gut, and having Coeliac Disease puts you at a higher risk of developing this type of cancer. I found out that Coeliac Disease is an autoimmune disease caused by a reaction in the immune system to gluten. I looked at the symptoms of Coeliac Disease and the pieces fit together. Stomach pains, persistent diarrhoea, weight loss, dermatitis, tiredness – all symptoms my dad had complained of.
Things went downhill rapidly. Dad started chemotherapy but had an extreme reaction to this. He became very confused and developed an infection in his mouth which caused him to slur his speech. He was transferred to palliative care as his health deteriorated. The chemotherapy had destroyed his immune system and he contracted pneumonia. Dad spent his last few hours surrounded by his family. He died 2 months after his diagnosis.
We can’t be 100% certain that he had Coeliac Disease but looking back, all the signs were there. If he had been tested and found out he had the disease, he could have taken steps to control it. I can’t help but wonder whether early diagnosis and a change to a strictly gluten-free diet would have made a difference.
I would suggest that anyone who has any of the symptoms of Coeliac Disease takes this assessment, and gets tested to prevent complications down the line.
My dad was a wonderful man who looked after his family and taught me so much about life. I think about him every day and miss him dearly.”