(Apologies for the pun – Ed)

I took this picture in my local Marks and Spencer to prove a specific point that, in turn, supports a broader argument. Specifically: a gluten-free diet is more expensive than a ‘normal’ diet. More generally: having coeliac disease makes life more difficult.

Coeliac disease is an autoimmune condition in which eating gluten (a type of protein found in wheat, barley, rye, and a bunch of other grains) causes the immune system to attack the small intestine, leading to inflammation and tissue damage. When the small intestine is damaged, it isn’t able to properly digest food and absorb nutrients; this can lead to people with coeliac disease having all sorts of symptoms and other related medical problems. Being an autoimmune disorder, there is no cure for coeliac disease and people cannot grow out of it. The only treatment is an absolutely strict gluten-free diet for life.

(Ed – it is possible to be diagnosed before symptoms manifest – Increasingly, diagnoses are being made in asymptomatic persons as a result of better screening; the condition is thought to affect between 1 in 1,750 worldwide, 1 in 105 people in the United States, 1 in 100 in the UK. If you have a family member with the condition then your chances are 2.6% in second-degree relatives (like grandparents, aunt or uncle, grandchildren, etc.) of a person with coeliac disease and 4.5% in first-degree relatives (siblings, parents or children)

Speaking as someone who wasn’t diagnosed until they were 23, I have to say that I love the difference that keeping a gluten-free diet has made to my health. Before I was diagnosed, I was incredibly unwell. Severe anaemia left me exhausted, constant nausea turned even simple tasks into battles of will, and my vitamin deficiency was so extreme that I was losing coordination – I was covered in bruises from bumping into walls and tables, and I once fell down the stairs and broke my tailbone. Compared to that, the way I felt once I stopped eating gluten and started letting my small intestine heal was practically heavenly. I don’t even pretend to understand people who choose to cheat on their diet. There is no piece of cake that tastes good enough to make up for a broken tailbone.

Now that that’s been established…

Speaking as someone who isn’t made of money, I have to say that I hate the difference that keeping a gluten-free diet has made to my finances. And speaking as someone who (while an introvert) is not a complete hermit, I also hate the difference that keeping a gluten-free diet has made to my social life. Eating any homemade food that someone’s brought into the office only happens after a fairly intense interrogation about each of the ingredients as well as the general cleanliness of all the utensils that were used to make, slice, and serve the food. Having dinner at a friend’s place involves a level of paranoia that is embarrassing for everyone involved. Popping into a café requires extra time to quiz the staff about whether or not the particular brand of hot chocolate they use has gluten in it. (Yes. Some brands of hot chocolate contain gluten. Please don’t ask me to explain. It is a fathomless mystery to me.)

I think what I hate most is the general fuss that is required whenever people with coeliac disease eat out at restaurants: researching the menu ahead of time, discussing things in painstaking detail with the waiter while family and friends stare, scrutinising the silverware like a snob to determine how likely it is that your food will be cross-contaminated, and so on. Fad dieters are to blame for a lot of this; people who are only avoiding gluten to lose weight – a terrible idea, by the way, but I’ll start ranting if I dwell on it too long – can afford to be lax and have led to a public impression of the gluten-free diet as something frivolous rather than medically necessary. Restaurants that are simply cashing in on the wider elimination diet craze will say that, for example, their pasta is gluten-free even if it is boiled in water that has already been used for regular pasta. A fad dieter would never notice or care about something like that whereas a person with coeliac disease will relapse, suffer organ damage, and face an increased risk of intestinal cancer.

Some folks are of the opinion that at least fad dieters are raising awareness of the gluten-free diet, but I completely and wholeheartedly disagree. People can’t raise awareness of something they barely understand themselves, and misinformation in this case is a health hazard. The NHS considers keeping a strict diet to be so medically important that it is possible to get certain gluten-free staples (pasta, bread, flour, breakfast cereal) on prescription. This means that part of my monthly food shopping involves a trip to the pharmacy! I try in particular to stock up before making any trips since I never know whether anything gluten-free will be available. Recently, a train I was trying to catch was delayed and there was nothing safe to eat at the station. I got out my secret stash of gluten-free bread and started munching away. A woman who was also waiting for the delayed train struck up a conversation with me about how she was also on a gluten-free diet but hadn’t thought to pack any snacks. We commiserated over how much of a pain it can be sometimes and I gave her a few slices of my bread. It felt good to find a kindred spirit. Then a further delay was announced… and she bought herself a Cornetto.

Have I mentioned how much I loathe fad dieters? Especially when they (specifically) eat my very expensive bread and (more generally) make living with coeliac disease more difficult?

 

For more scientific info please go to

http://omglutenfree.co.uk/coeliac-disease/

(Ed – Thank you for that Lykara, much appreciated. I wanted to do a guest blog and I knew she was a great writer, so was keen to get her involved. On a side note I personally didn’t twig that Cornettos had Gluten in… (but should have guessed). Other things which contain Gluten are: Such as pastries, doughnuts, pies, pretzels, Beer, Pizza, Chicken and beef broth (cans and bouillon cubes) Condiments, salad dressings, and sauces, Crackers, Deli meats, Falafel, Hot dogs, Ice cream… in fact most things. My mother is a coeliac and only gets one or two options at the most when she goes to a restaurant.

When you have something like Cancer people don’t ask you how serious it is, or suggest you just might be being difficult, but with Coeliacs, people often just see it as someone being a nuisance. as a cancer sufferer I see this as a little bit unfair and so wanted a blog post to address this. Not being an expert myself this was gratefully received.
 On a final note, and amusingly as an agnostic, being a coeliac throws up religious problems as well. This is because you will be unable to eat the host, or the body of Christ. Take that transubstantiation…)