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Written by Bunmi. Tuesday, May 5th, 2015
Coeliac disease is a lifelong autoimmune disease caused by intolerance to gluten. Once diagnosed, coeliac disease is treated by following a gluten free diet for life. According to Coeliac UK, “1 in 100 people have the condition.”
Hazel is 53, from West Yorkshire and was diagnosed with coeliac disease in August 2003, when she was 41.
Hazel was shocked when she found out she had coeliac disease. She was told over the phone by a dietician, who had rang to ask to see her about eating gluten free. The dietician had been told before Hazel!
Suffering from Lupus, a poorly understood condition that affects many parts of the body and causes symptoms ranging from mild to life-threatening, Hazel had an endoscopy to find out why she was anaemic and had so much pain in her joints.
It’s only in recent years that gluten has given her such problems. Hazel has now lived without gluten for so long, her symptoms are much more evident. These include bad stomach cramps, diarrhoea and a general feeling of lethargy for a day or so.
Coeliac disease has affected both Hazel and her family. She considers more healthy and fresh options when eating. She also cooks and bakes a lot of food for her family, but she doesn’t expect them to eat gluten free.
Hazel explained, “It has been a little difficult educating them all about cross-contamination. I do tend to be paranoid about gluten containing food touching my work surfaces.”
Hazel can’t join in with my family for most take-away food nights, but she would never stop non-gluten free family from enjoying these things.
Holidays abroad are far more researched, self-catering is easier than staying in hotels.
When she was diagnosed, shopping became more expensive and the dining out experience became more limited. Hazel said, “I eat out much less than I did prior to my diagnosis, but I never refuse invites. Research is always a must and if I like a restaurant, I always let them know. I think it’s important to try all venues. The more people that visit restaurants, the more chance we have of making things easy for us coeliacs.”
Raising awareness is important to Hazel, “If a venue say they can’t cater for me, I ask them why. Usually they are more than happy to speak to someone that can give them ideas to change this.”
Hazel finds eating out in large groups awkward, “I am usually the one slowing down the order process because I need advice about the menu.”
Barbecues and buffets aren’t great dining experiences for people with coeliac disease – taking your own food is usually a must and sometimes the host can find it quite rude.
On initial diagnosis, Hazels close family members were educated alongside her. Other family members and friends, despite trying their best, can make major cross-contamination mistakes. They can also sometimes regard the diet as a fad diet, trying to offer the wrong advice e.g. “Oh go on, one won’t hurt!”
When asked if she has any advice for others who have coeliac disease or those who think they may have it, Hazel said “Always carry on eating gluten/wheat until a doctor has completed the relevant tested and diagnosed you. Use social media to help you, the free-from community is great. Coeliac UK and Foods You Can are brilliant for advice and sharing product information with others.”
Hazel added, “Always research in advance before visiting somewhere. Don’t be afraid to speak out and say thank you for good service. Offer information to the places that struggle to provide a gluten free option/service.”
Research to see if there is a local support group – these groups can be a good way of finding venues and products local to you.
Focus on what you can eat, not what you can’t. Don’t let coeliac disease control you – embrace it.