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Living with Coeliac Disease – Part 1

Gluten FreeAdapting to life following a diagnosis of a food allergy, intolerance or coeliac disease brings a lot of obstacles and means things that previously were never considered are suddenly brought to the forefront. We sat down with Vandna, a postgraduate student, to have a chat about her struggles following her diagnosis of coeliac disease.

What were the main challenges you faced when you were first diagnosed?

I found it really difficult to make my family understand what I was going through. I don’t know if it’s just an Indian thing but they weren’t convinced that there was something wrong with me as such. They believed that this allergy was all in my head. Like they thought I had built up a fear of certain foods and now that I had been diagnosed, it would reinforce that fear. Weird I know!

Were your family supportive? Did it take a while for them to adapt?

They were not supportive at the start. Yes, it took them a while to adapt. Maybe about 3 months or more. They thought (and still do at times to be honest) that there is something else, other than being coeliac, wrong with me. Although, now…about 8 months after being diagnosed, my family are really supportive and I’ve managed to give them lots of information and teach them a lot about the condition and so they really are supportive. They can spot foods which may not be safe for me and they are very helpful. It’s been a long, bumpy, difficult ride but they’ve eventually come round!

Approximately how long has it taken you to adjust to a gluten-free diet, and have you been able to stick to the diet since you were diagnosed?

Well, at the start it was really difficult. I don’t know what was more difficult – not having the support of my family or having to give up so many foods! Although, on the odd occasion, I do crave some nice, soft, fresh bread (especially after walking through the bakery bit in supermarkets), I had gone off bread the day of the diagnosis. I knew it made me very ill and I’ve not had bread since January 2014! Adjusting took a while because I like my Indian food and we have lots of chapattis and just gluten-containing foods, and back then I didn’t know what I could substitute wheat flour with. But around 4-5 months after being diagnosed, I found a substitute for a lot of the foods and it started getting easier. Anyone who knows me knows that I loveeeeeee pizza and it was so difficult to say no to pizza. For the first 4-5 months, I would have a cheeky slice whenever my family would bring it home but eventually I stopped because I realised I was still very sensitive and I’d have to suffer the consequences soon after eating it.

To be honest I think I’m still adjusting. It can be difficult because there are certain foods you wouldn’t think contain gluten e.g. a rice noodle recipe but most soya-sauces used contain gluten. Even though there are certain pizza places that offer a gluten-free base option, I keep telling everyone I Pizzawill never be enjoying a pizza again – the gluten-free pizzas just don’t taste the same.

Looking back, what do you think might have helped with adapting to a gluten-free diet?

I am a lacto-vegetarian and so already I had gotten used to certain foods but finding out that I had coeliac disease meant that that specific food list got even shorter. I think it would be so helpful if there was more information on being a lacto-vegetarian and having coeliac disease. A lot of the substitute foods contain eggs which makes it difficult to find even substitutes. At the start this is one reason I found it very hard, but I’m slowly getting used to it and it’s probably because I’m baking and cooking more foods at home. However, I’m only able to do this at the moment because I am currently looking for a job after finishing my masters. I don’t know how well this is going to work when I start working, etc.

Understanding food allergies and intolerances is important for everyone, so that we can all be prepared to cope with our own, our families, or our friends allergies to make adapting that much easier. This type of education is important for all ages, particularly as allergies are particularly common in children. Food Freedom provides workshops for schools so that children can receive information that can benefit both themselves and their friends in reducing those challenges that accompany an allergy diagnosis.

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