Nick, in his 40s, from Sevenoaks in Kent was diagnosed with Coeliac disease 5 years ago. Because of the challenges of living with the condition, Nick has completely changed his diet.
Nick was a fit rugby player and builder, he had experienced some problems but he never suspected that he had a gluten allergy until a particularly stressful time with a family bereavement and he started to feel unwell. Nick explains about the challenges of getting diagnosed:
“I had an emotional upheaval and lost 1.25 stones and had diarrhea, I got worried about controlling it.
“Even when I felt bad I carried on it was a new normal. So I carried on playing rugby and training.
“The doctors gave me Imodium and painkillers. I went to see a series of doctors and one of them finally said they thought I had a gluten allergy or was coeliac. After going through camera explorations in my colon to check for cancer, I was given the all clear from that and had to swallow the camera, which was very unpleasant.
“As soon the consultant saw my esophagus, he could see it was ulcerated and he confirmed that I had coeliac disease, I was relieved to find out it wasn’t something more serious. It was good to get a diagnosis. “
Change of diet
Nick immediately changed his diet, thinking it would only be bread and pasta but soon discovered there is gluten in lots of things, including beer and balsamic vinegar. Nick said:
“You know when you have eaten something it makes you very tired and comes in waves. As soon as you start to exclude gluten, you start with bread and then realize that lots of things have barley, flour and wheat.
“I rarely eat bread and I really miss it, specially white bread or French bread, dipping in oils. I’m too impatient to cook something like a bread mix, but if my wife makes me a gluten free loaf I can enjoy it.”
“In the first 3 months you see an improvement, but you still have things like Balsamic vinegar. Which actually has barley and gluten in it. The longer you stay off gluten the worse the effect is when you do have accidently have it…like when you eat out. Bloating and pain and tiredness are the worst symptoms and I think my daughter has it.
“Sainsbury’s is great with its free from aisles, (this is where Bakels Gluten Free loaf is found)
“I eat lots of fish, chicken, veg, rice and potatoes and fruit in moderation.
I’m a builder, so I prepare my food in the morning. I have to commit to this because I have no choice. I would consider eating bread but not in huge amounts. “
Nick still plays rugby and says that he now makes sure his food is highly nutritious and cooked in one pot, using rice and chickpeas.
Nick finds going to restaurants a real challenge, often they will say something is wheat free but they will put a bowl of bread on the table or put balsamic vinegar in food. He feels that there is low awareness of what foods / liquids contain gluten in restaurants
“People me ask me if I have gluten rage because I find they don’t understand it and it can ruin a meal out. I went to Beaulieu and they had a lovely restaurant, I asked for gluten free, and the chef, who was coeliac too was able to tell me that all the food was gluten free. It really makes all the difference, I will be going back there!”