What Is Coeliac Disease and How Does It Affect the Body?
I am coeliac, I have an autoimmune condition and when I eat gluten, it causes the villi in my small intestine to die and then I cannot absorb nutrients properly. Currently, science does not really understand what causes the autoimmune system to start to behave in this way, but I think I ‘caught’ it when I was about 11 years old because up to that point I grew at a ‘normal’ rate. The family photos of me before this time all show me looking healthy and well fed, but after that I appeared to stop growing. This makes me think that whatever it was that switched that switch which made my autoimmune system start malfunctioning, happened around that time. My coeliac disease was discovered in a very roundabout way, not through doctors or hospital appointments, but at a swimming competition.
I’m just going to pause a minute to tell you about my swimming career. My mother took me to swimming lessons when I was only three months old. By the time I was three years old, I was able to swim unassisted and I began swimming competitively when I was eight years old. I was good, if I say so myself, making county and regional competitions at the age of 10. There was a group of us in the same squad, who were roughly the same age and skill level. Around the same time when I caught whatever caused my immune system to stop functioning correctly, I simply stopped growing. However, all my squad mates continued to grow and I was soon the tiny kid next to my ‘normal’ peers. I also started struggling with my swimming because everybody else grew and started to swim faster than me because their muscles and limbs got bigger. Mine did not. I remember the coaches telling me ‘It will happen’ that I had great technique and swim times would come with growth and development. But it never happened. I stayed small and everyone else was suddenly better than me. The thing is, it was not just the lack of growth that was having such a huge impact. I was training 15 hours a week with early morning starts, before going to school and doing everything else that kids do, all while being nutrient deficient – starved! I was tiny, skinny, and simply exhausted.
So back to the story. When I was 14 my mother was sitting next to her friend, Sarah [not her real name] at a swim meet. Unbeknownst to my mother at that time, Sarah was an endocrinologist. They had been watching me (and Sarah’s daughter) for as long as we had been competitively swimming.
When I stood on the blocks, I looked very different to the other swimmers. My mother commented, almost absentmindedly, how I looked so much smaller than everybody else. sarah then said, probably equally absentmindedly, that it might be worth having my testosterone levels checked because I might just need a bit of the male growth hormone to get things going. She explained she was an endocrinologist and she suggested asking for a referral to her department at the hospital.
After seeing my G.P. and getting a referral to endocrinology, my testosterone levels were checked but were found to be normal for my age. I was devastated because I had begun to believe that a shot of testosterone would solve all my problems. I was 15 years old at the time. I was only 5ft 3 inches and weighed 50 kilos. I was desperate. At the end of the appointment, Sarah asked me whether I had ever been tested for coeliac disease, and if I hadn’t, it would be worth doing just to check all possibilities. When the tTG-IgA test which they use to test for coeliacs, came back, I was literally off the scale. Sarah was under no doubt – I had coeliac disease.
As coeliac disease is incurable, the only method to overcome it is to exclude all gluten from your diet. Even a crumb of gluten can make you ill, meaning cross contamination is a real issue. So, at the age of 15, my life changed and I had to adopt a whole set of behavioural changes to manage my incurable condition. I had become a coeliac. Undoubtedly, I have done rather well after excluding gluten from my diet. In the two years since I was diagnosed, I have grown massively and now stand at a towering 6 foot 3 inches tall and weigh 75 kilo and my swimming is back on track.
The Impact of Coeliac Disease on Everyday Life
So, I am now 17 years old, and I had to do a dissertation for my A Levels and I decided to do an Extended Project Qualification (EPQ) on the experience of being coeliac.
The first thing I did was to look around at the existing research literature to try and make sense of the disease and its impact on people. There was an awful lot of literature on the medical impact and process of the disease but almost nothing on the impact it has on people’s lives and seeing as the disease is incurable, it seemed to me quite a big omission. Although the process of controlling your diet sounds like a simple thing to do, it is not as easy as it sounds. I found some information that suggested there is more to food than just sustenance, and how it provides cultural identity, and plays an important role within families, among friends and with work colleagues. The issue is that coeliacs often feel excluded from socialising around food, as there is often a lack of suitable and safe gluten free options in restaurants, cafes and takeaways, or even a slice of birthday cake in the office. This exclusion leads to feelings of isolation and there is evidence to suggest that teenagers often avoid social situations with their friends as they feel like they were viewed as difficult. This felt particularly true to me.
How the Social Model of Disability Explains Coeliac Challenges
Then I stumbled across something called the social model of disability and used it to make sense of the social impacts of the disease. It looked at barriers that exist which prevent people from taking part in day-to-day life and I felt that I was experiencing many of these things.
So, I decided to use the social model of disability as a lens through which to understand coeliac disease and my experience. The more commonly used medical model of disability, could not explain my experiences, as it only really talked about how medicine is unable to find a cure and that all you had to do is stop eating gluten and so it’s not really that serious and you certainly are not classed as disabled. This was not massively helpful to me or anyone else with the disease.
Navigating Social Stigma and Misconceptions About Coeliac Disease
The next stage of my project was to ask other coeliacs if they had experienced any issues in their lives because of having coeliac disease. I designed a questionnaire and sent it out to a few online coeliac information groups. I remember I submitted the questionnaire on Friday and by Monday, I had received 200 responses. It turned out that people really wanted to talk about coeliac disease and the impact it had on their lives because nobody had ever really asked them before. These are the types of things people said about having the disease:
‘When I get asked to go up for meal, I feel apprehensive, different, anxious and like I’m an inconvenience.’
‘Coeliac is something that many people live with, just as much as diabetes. If the world was more versatile for gluten free, then there is no reason for coeliacs to have to live life in fear of contamination.’
‘TV shows, documentaries and chat shows have huge responsibility when it comes to food allergies and their dangers. Unfortunately, a lot of the time it’s made a joke of, which in turn makes it seem not serious!’
‘I’ve just went to a work event and the place did GF but used the same fryers which no one thought was an issue! I wouldn’t eat so was excluded from it. Going anywhere is always having to plan. You can’t just decide on a whim what to do anymore.’
‘Eating out is stressful as too many restaurant staff lack basic knowledge and ‘guess’ that certain foods will be safe for coeliacs to eat. I feel that you have to be very assertive and be insistent that staff double check everything and this often seems to be frowned upon or seen as ‘fussing’.’
Insights From a Survey of Coeliacs: Common Barriers and Experiences
Also from the questionnaires, it became clear that most people had to make changes to their lives, including the following:
- 70% of people said they had to contact venues before going and ask the kitchen about food preparation and service,
- 89% reported that they found gluten free foods more expensive, both at restaurants and in supermarkets
- 82% of respondents brought their own food when they went out for a meal.
- 63% used separate equipment in their own homes, such as toasters or chopping boards and ovens, and
- 40% of people used specialist apps to screen food and venues.
All this information felt like the social model of disability explained the impacts of coeliac disease much better than anything else did. The social model of disability, as I understand it, says that people are not disabled by their impairments, such as having a disease, rather they are disabled by the barriers that they encounter during their day-to-day life which prevent them from participating in life equally.
From my experiences and from the research, I find this to be very true: there have been many times when I have not been able to join in a group activity which focuses on food, like so many social occasions do, because there has been no available safe food. I know there have been other times when my friends have not invited me because they know the restaurant where they want to go does not cater for coeliacs.
Not only this, but people tend not to take it seriously and think you’re just being fussy and making a lifestyle choice. Living with coeliac disease is often belittled and trivialised and we are made to feel like the problem, which is something the medical model of disability does. This happens to such an extent that many coeliacs choose not to include themselves in group activities because of not wanting to be shamed by people’s misconceptions.
Economic Costs of Living Gluten-Free: A Coeliac’s Perspective
Being coeliac also costs more, which leaves me out of pocket and less able to do other things with my money, just to be equal with non-coeliacs. This is in fitting with the social model of disability, which says that families with a disabled member pay on average £1000 more a month after taking into consideration all earnings, than non-disabled people. My family spend considerable amounts of money on essentially creating an entirely separate kitchen, with specific cutlery, microwaves, toasters, ovens, plates, and chopping boards, to name a few. Also, the weekly food bill for coeliacs is 35% more than that for non-coeliacs.
These factors are explained by the social model of disability more effectively than the medical model. In the questionnaire I asked the participants if they feel like coeliac disease should be classed as a disability. Nearly 30 percent of respondents said that it should.
Why Coeliac Disease Deserves Disability Status Under the Equality Act
In the UK, disability is defined using the medical model which identifies the impairment as the issue rather than the barriers experienced. Using this model, the Equality Act 2010 says that people are disabled if they have a long term (over 12 months) condition which negatively affects their ability to undertake ‘normal’ day-to-day activities. As the medical model concludes that reducing the impact of coeliac disease is just a case of withdrawing gluten from the diet, currently having coeliac disease is not classed as a disability in the UK. This means that coeliacs are not protected by legislation as other disabled people are. It must also be highlighted that in many other countries, such as America for example, coeliac disease is classed as a disability and in some countries such as Italy, they are not allowed to add VAT to gluten free produce.
However, I have found through my own personal experiences and through my research that even when using the medical model and the Equality Act definition of disability, that coeliac disease should still be classed as a disability as it negatively impacts on people’s ability to do ‘normal’ activities. I have also found that using the social model of disability gives a better understanding of the impact of the disease, for example, coeliacs experience social and cultural preconceptions and prejudice, economic effects with higher prices for equipment and food items and physical barriers, for example, smaller cafés and takeaways argue the restricted space in their premises means they cannot guarantee against cross contamination. These are the barriers which prevent coeliacs from being able to undertake ‘normal’ daily activities.
Using the responses to the questionnaire as a measure, most coeliacs have a common experience of ‘disability’ as it does negatively affect the ability to do normal day-to-day activities. If it was considered a disability, it might be easier to reduce the barriers experienced, as legislation through the Equality Act 2010 has been set up to prevent discrimination and increase access.
If we say to restaurants and takeaways that equality legislation dictates reasonable adjustments must be made to make services accessible to disabled people, then change may happen. If not, it just remains a nice thing to do rather than something that people need to do by law.
Also, if it was to be incorporated into disability definitions then people may take it more seriously and I, and at least one in every 100 people in the UK who are affected by coeliac disease, won’t be made to feel as if they are being a pain and getting in the way.
This blog has been written by Alaster Hartworth, an A-level student at a North Tyneside School in the North East of England, who was diagnosed with coeliac disease when he was 15 years old. Whilst conducting research he realised that could contribute to changing perceptions of people affected by coeliac disease and was keen to share it with others. Please fill out this feedback form!
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