It is just over six months since I was diagnosed with coeliac disease. Since then I have not intentionally eaten any gluten, a protein found in wheat, barley and rye. This means no warm French bread, no buttered crumpets, no tea cakes, hot cross buns, scones or pancakes; no Hobnobs, crackers or Twixes; no spaghetti bolognese, sausage rolls, pizza or soy sauce; no muesli or porridge, flapjacks or hot fruit pies. No Yorkshire puddings, gravy or stock cubes; no French Fancies, Battenberg or lemon drizzle cake.

Do I miss it? Well yes, painfully so. But as I frequently remind myself, there are far worse treatments to a lifelong disease than having to change your diet.

Coeliac disease is a genetic autoimmune disease. This means that eating the trigger for the disease – gluten – causes the body to attack itself. It blunts the villi on the inside of the small intestine, stopping normal absorption of food. Over time this can lead to osteoporosis, anaemia, diabetes, infertility or frequent miscarriage, lymphoma and bowel cancer. It causes severe digestive symptoms, mouth ulcers and tiredness among a long list of other symptoms, and is often misdiagnosed for years. Sticking to a strict gluten-free diet for life is the only treatment, but it is an effective one.

The strictness of diet doesn’t just mean avoiding the obvious suspects such as bread or pasta. It means using a separate chopping board to avoid gluten contamination, using a separate toaster or toaster bags, and checking ingredient listings for obscure additions such as wheat protein in ice-cream or yoghurt, or barley malt flavouring in chocolate bars (goodbye Snickers, goodbye Mars bars). Oats can be eaten by some people but they have to be specially bought, non-contaminated ones, as cereals are frequently milled together. Beer is also ruled out. Oh and chips are usually coated in flour before frying.

On the plus side, because of the higher cost of gluten-free food and the necessity of strict adherence to the diet, several items are available on prescription. Having just received my first load of bread, spaghetti, pizza bases, flour and more, I have found it entertaining to eat a packet of biscuits with ‘Use as directed by the doctor’ on the side. Four a day with a cup of tea?

Although there are gluten-free replacements for most foods, usually made of corn, rice, potatoes or tapioca, I do feel the absence of much loved foods, as may be apparent from the food list above. However, one of the most difficult things about the disease is other people’s reactions. Coeliac disease affects approximately 1% of the population but it is hugely under-diagnosed. This means that of that 1% only a small proportion know they have it. As a result the disease isn’t well known to many people, including those who run cafes or restaurants, and the medical necessity of the diet is often misunderstood.

When I have been offered something to eat at a social occasion, for example a cake at a party, and have explained why I can’t eat it, people’s reactions fall in to a variety of camps. As well as kinder or more helpful responses I have been scoffed at and told not to be so fussy, accused of health paranoia and self-diagnosing an intolerance (diagnosis is via a blood test and endoscopy if you were wondering), and have been taunted about how lovely something I can’t eat tastes.

Now this isn’t the worst thing in the world to put up with, but I do wonder how many other illnesses are treated with such misunderstanding at best and dismissiveness at worst. The rise of gluten intolerance and gluten-free diets through choice has created an increase in products available, which is great for coeliacs, but also a perception of faddishness or health neuroticism. Those with coeliac disease seem to get lumped in with this perception.

The other main obstacle is eating at cafes or restaurants. Some well-known chains have one or two dishes available, usually with some modification, but often it is necessary to phone ahead to check the menu or make special arrangements. It can be necessary to ask for something to be cooked in a separate pan to avoid contamination, or to check individual ingredients such as stock cubes. Personally I find having to make such requests embarrassing; if the disease were better-known, eating out would be much more enjoyable. The training of catering staff hugely differs. I have been assured in a top end restaurant that something will be fine for me “because all our food is organic” (erm…) or told that something is gluten free when, after several days of pain and tiredness, I can assure them it is not.

The leading charity for the disease, Coeliac UK, is holding an awareness week from the 16th to the 22nd of May. They’re asking people to go gluten free for a short period, to provide gluten-free options at their workplace or school, or to hold gluten-free dinner parties. You could also try looking, as an experiment, at the nutrition labels of your usual lunch or dinner to see how many times it contains gluten. Maybe have a look at what your alternatives would be if you had to give it up or had to provide an alternative for someone else. And next time you meet someone who explains they have coeliac disease, please don’t taunt them with a Jammy Dodger…

For more information on coeliac disease including symptoms please visit www.coeliac.org.uk.

If you would like to take part in the Awareness Week please click here: http://www.coeliac.org.uk/node/146078

If you would like to donate to Coeliac UK you may consider sponsoring a 10 km run I will be doing for them in July:
http://www.justgiving.com/AlexaBrown

By Alexa Brown, donate to her run here