How was your daughter diagnosed with coeliac disease, and what were the symptoms?
My daughter became very ill at 18 months old. She was vomiting up to 20 times a day, had constant diarrhoea and lost over a third of her body weight! She also had an extremely distended stomach. It took six months to get her diagnosed as the GP just kept saying she had a stomach bug. Eventually the GP agreed to refer her to the gastro team at the Norfolk and Norwich hospital. There they ran blood tests, which showed a very high marker for coeliac disease. Two weeks later she had to go into surgery and have biopsies taken, which showed she definitely had the condition.
At what age was she diagnosed?
My daughter turned two the day before her diagnosis.
What have you been told about her prognosis?
Coeliac disease is a lifelong autoimmune disease and requires a very strict gluten-free diet. This needs to be adhered to as otherwise my daughter will become very ill again and her risk of osteoporosis and small bowel cancer would increase.
Does she take any treatments for the condition?
A strict gluten-free diet is the only treatment for coeliac disease.
Are you happy with the NHS care received – could any aspect have been improved?
Unfortunately the NHS removed gluten-free staple food on prescription for people in Norfolk about a year ago. This has had a massive impact as gluten-free foods in supermarkets are three-to-four times the price of normal foods! Also supermarket gluten-free food is not as good quality as the prescribed food.
Were you given any information on clinical trials investigating coeliac disease?
No I have not received any information.
Would you consider letting your daughter take part in a clinical trial?
As my daughter is still only ten and also has autism I probably would not put her in a trial until she is old enough to make the decision for herself.
What do you find the most difficult aspect of the condition?
Going out anywhere is always very hard. Most of the time we have to take food with us as we don’t know if there will be gluten-free options available. If we go somewhere having researched and found out there are gluten-free options there is still the fear that something will be cross-contaminated as it only takes a few breadcrumbs to trigger a reaction.
Has it significantly impacted your lifestyle?
Yes it impacts every aspect of our family’s lives because we’re always thinking about whether things will be safe for my daughter to eat.
How often does she inadvertently ingest gluten?
Throughout the eight years since her diagnosis it has only happened a handful of times. But when it does happen it is awful! She will begin vomiting within 20 mins of ingestion and will then vomit around every 10 mins for about six hrs then she will have diarrhoea the next day and will have stomach pains and be tired for approximately a week after.
Do you think the depth and quality of information offered to patients in the UK is adequate?
No I don’t feel it is! Information isn’t given to you. To find out in-depth information you have to search for it yourself. Coeliac UK’s website [www.coeliac.org.uk] is a good source of lots of useful information.
What do you think are the key challenges facing people with coeliac disease in the UK?
One of the biggest challenges is financially being able to adhere to the diet. And also awareness needs to be more prevalent in the catering industry.
Do you think the general perception of the disease is accurate?
No, unfortunately there have been a number of celebrities who have undertaken a gluten-free diet without being a coeliac. This has then caused the perception that it is a fad diet rather than an autoimmune disease that has a severe impact on the sufferer’s life.
What message would you give patients newly-diagnosed with the condition?
Don’t be afraid to ask for help! Social media is a good place to meet other coeliacs and ask for advice. It does become easier once you get used to reading labels and assessing what is safe and what is not.
What is your greatest hope/fear for the future?
I hope one day soon gluten-free prescriptions will be reinstated or that a system can be put in place to cover the deficit between the price of normal and gluten-free food. I also hope one day a medication can be developed so coeliacs can eat without fear of becoming ill.
