Last week, I published A Letter from Your Token Coeliac and little did I know, it would reach way, way, way more people than I ever thought imaginable. Ever since I've been getting emails from all over the globe from people who didn't ever really think about how coeliac disease would affect someone's everyday life - and quite a few emails from people who thought that coeliac disease was just about a gluten free diet.
Unfortunately for us, coeliac disease is more than just a "gluten free" diet. In fact, it's a whole lot more than that - and since it probably affects at least one person you know (if not yourself), I think it's important we clear up some of the facts.... with cartoons of course ;)
So let me share a little bit of the truth in the best way I know how - with a little bit of humour and plenty of silly scribbles >>
TRUTH: You don't choose to have coeliac disease
Because, to be honest, if you did I'd probably have to pop your name on that mental hospital waiting list....
No one chooses to have coeliac disease. It's a genetic condition. Call it natural selection, call it bad luck, call it whatever you like; people with coeliac disease have one or two genes that are responsible for all the drama... kind of like a bad reality TV show cast.
TRUTH: A little bit will hurt
And if you tell me one more time, it may be you who ends up hurt....
I hear it all the time. "Oh Kristy, just one slice of cake will be okay" or "You're so good with being gluten free, why don't you take a break?" or "I know so-and-so cheats on special occasions so you'll be fine!" - but that's not how coeliac disease works.
You see, I can't peel back the bread from a sandwich and eat the fillings - in fact, I can't even eat a sandwich on gluten free bread that's been prepared on the same cutting board or cut with the same knife as a "regular" sandwich.
A little bit is really all it takes to do damage to a coeliac - whether they feel it or not. The truth is, it only takes one tiny tiny little crumb. 20 parts per million of gluten is all it takes to damage the small intestine of someone with coeliac disease.
TRUTH: We really do need to ask all those questions
We're not being pedantic, we're just trying to avoid urgent bathroom visits, days spent in bed and feeling like we just swallowed a piranha...
If you're a coeliac or have a friend or family member with coeliac disease, you'd know that we tend to ask a bunch of questions before putting something in our mouth - or we read labels and check allergy listings.
Why? Because it takes such a small amount of gluten to do serious damage.
When we're grilling a chef at a restaurant (possibly more so than the medium rare steak we're trying to order) or asking you what ingredients went into your gluten free cake and how you prepared it, we're not being pedantic - we're just trying to get sick.
And don't even get me started on how it's embarrassing for you. Think about how it feels to have a medical condition that tends to make others think you're just another member of the Hollywood diet club.
TRUTH: Cross contamination from gluten is all it takes
It may have been gluten free, but when GF food touches gluten, it may as well be wheat...
Take this scenario as an example.... At a restaurant I spent (what felt like) half an hour talking to a chew about how I needed my food to be gluten free. I didn't care if it wasn't the most flavourful or fancy dish in the world, I just wanted my food to be safe. The chef agreed and scurried back to the kitchen to personally cook my food.
The food arrived, I took my first mouthful and my face dropped. Jesse knew "the look". The Kristy knows something's up and $#!+ is about to go down look. My plain rice tasted like friend rice so I called over the waiter. The waiter called the chef back up who explained that my food had "no gluten, just flavour!".
The chef had cooked my rice in the same pan as fried rice which contained gluten. A few hours later, the symptoms started. Whilst I hadn't physically eaten any gluten, the cross contamination was all it took. I had the belly of a 6 month pregnant woman on my teeny tiny frame, I was dazed and confused and in excruciating pain - and the symptoms continued for weeks.
That is what we coeliacs like to call being "glutened". The symptoms vary for every coeliac - some will vomit, some have diarrhoea, some will be constipated, some turn into an emotional wreck and some don't even have external symptoms - but regardless of the reaction, the internal damage is still done.
TRUTH: Coeliac Disease is an Auto-Immune Condition
Because the only thing tough enough to kick my butt is me!
Why is that internal damage happening? Because coeliac disease is an auto-immune disease. That gluten triggers an abnormal response in our bodies.
A coeliac's body sees gluten as a "foreign invader" - much like a virus or infection - and goes on the attack, thinking it's doing the right thing. Our little immune system army goes after the gluten with a vengeance and our villi (the finger like bumps inside your small intestine which absorb all the nutrients from your food) are damaged. That damage can be so extreme that those villi are completely flattened - looking like they've been run over by a series of army tanks.
When these little villi are flattened, they can't do their job. All those nutrients you put into your body, whether it be food or even supplements, can't really do anything and just get passed through. As you'd already know, we need those essential vitamins and nutrients for our body to function - thus when a coeliac's villi is flattened thanks to gluten, that damage causes serious trouble.
TRUTH: Gluten causes more than an "upset tummy" or bloating for a coeliac
You haven't seen a "hot mess" until you've seen a coeliac on gluten...
I hear it all the time, "oh yeah, I don't eat gluten because it makes me bloat". Um, yeah... I'd probably bloat too if I ate a whole pizza or a dozen donuts.... but really, a coeliac doesn't eat gluten free for aesthetic reasons - and we certainly don't do it because it's trendy.
It's way more than an upset tummy or a bit of bloating for coeliacs. Whether it causes pain or external symptoms or not, the damage I spoke about above is being done.
When I'm glutened it leaves me feeling horrendous for weeks. For the first initial days I'm bed ridden, my brain feels foggy, my stomach is the size of a heavily pregnant woman, I'm nauseous and I turn into a completely different person. Someone who's emotions change within seconds, someone who writhes around in horrendous pain and has extreme back pain from the fact that her stomach is SO distended and bloated that her skins physically burns. That's the definition of hot mess right there.
TRUTH: If a coeliac continues to eat gluten, the problems only get worse
When you feel like you see your doctor more than your friends, you've got a problem...
You see, coeliac disease doesn't stop there. As well as having a number of conditions related to the gene itself (as the coeliac gene is an autoimmune gene - meaning you are more likely to have other autoimmune conditions like rheumatoid arthritis), if a coeliac continues eating gluten - or even continues having their small intestine damaged through cross contamination/accidental "glutenings", they're at an extremely high risk of developing other conditions.
Things like bowel cancer, anaemia and nutritional deficiencies (because your villi can't absorb those nutrients!), infertility, osteoporosis and even organ failure.
TRUTH: There is NO cure for coeliac disease
Because "magic pills" aren't really a thing...
Another thing that people tend not to understand is that there's NO cure for coeliac disease. Whilst there's scientists currently working on experimental treatments and vaccines, there is no cure at this time.
Please, don't tell us that your aunt/sister/cousin/teacher was "cured" of coeliac disease by standing on her head, getting acupuncture on top or a mountain, drinking green smoothies or having hypnosis - there is NO cure if you have coeliac disease.
The only treatment for coeliac disease is this: a strict gluten free diet. That means avoiding cross contamination (yep, our separate gluten free toasters and bits and bobs are a medical necessity) and ensuring that you only eat foods that are completely free from gluten.
We don't choose gluten free food as a diet or lifestyle, it's a medical necessity.
But tell me, who's your token coeliac? Or are you the coeliac?
What's one thing you wish you had a magic pill for?