It all starts with being told you might have an autoimmune disease with no cure. Then the diagnosis is confirmed and everything looks pretty grim despite finally having answers.

For me getting diagnosed was only the beginning. I had a number of other health issues that were now treated differently and I finally started to feel better. I’ve seen people claiming you don’t need an official diagnosis if you know you feel better after going gluten free. If I did that my vitamin deficiencies and muscle/joint problems would still be making my life difficult. It wasn’t enough to go gluten free. I have to take supplements, have to be careful about what I eat and that’s not limited to gluten.

When I got diagnosed I thought it would be really difficult to live with the disease and do gluten free properly. I mean, gluten is in everything, right? Wrong! I have a pretty busy schedule and I spend half my life on planes and in hotels. I can’t afford for CD to dominate my life. I decided on day one that I’ll figure it out and will make it as easy and simple as possible. Just over one year in and it’s working. Well, most of the time.

I learned how to read labels and never used apps for food shopping. This is also useful when I’m abroad. I’m not relying on a database that can be outdated or can suggest foods that are not safe. It doesn’t take more time or effort either. I don’t limit myself to sopping in the free from section either. I only buy food that is labelled gluten free when I absolutely have to and there is no alternative.

I’m also not paranoid about gluten. Well, most of the time I’m not. Accidents do happen and I don’t think I could avoid it, unless I give up what I’m currently doing and that’s not happening anytime soon. When I fly for more than 5 hours I have one big pack of Haribo and Reeses, just in case… 7 long and 5 short haul round trips later, I never needed my emergency “supplies”, my pre-ordered gluten free meal was never forgotten. Whether food on planes is good or not is a completely different story…

Living with this disease is only as difficult as we make it. I could say it’s difficult because I can’t just eat anywhere and finding a place that knows what gluten is or how to avoid cross contamination sometimes means google-ing for half an hour but it’s definitely not the end of the world. I also won’t walk out from a restaurant if there is only one thing I can eat. At least there is something. And if I didn’t plan ahead and found a place with an extensive menu then it’s not fair to blame anyone but myself.

I also don’t expect shops and manufacturers to be super organised and make it easy to shop for gluten free. It would, of course, be much easier if everything was clearly labelled but imagine if they had to do this for all 8 allergens that currently have to be listed on ingredient lists. Pretty much impossible.

I read on various forums about people being offended about free from sections not being entirely gluten free. Or how sometimes gluten free food is mixed with other foods in freezers. I think if we want to be offended and feel excluded, we will always find a reason. But in all honesty, living with CD and dealing with a gluten free diet are a lot easier then having  a condition that progresses over time and/or requires medication.

All the misinformation and urban legends can make it more difficult too. Here is a list of my favourite and most common ones:

  • you need to use gluten free everything – unless you plan to eat your shampoo and make up etc. you don’t
  • gluten free food can be cross contaminated through packaging – just no
  • gluten can get into your system through your skin – nope – also even if it did, it won’t go anywhere near your small intestine, where the autoimmune reaction is triggered
  • if you fry something on high temperatures it will be gluten free – gluten isn’t one of those things that can be killed with fire
  • you can grow out of Coeliac disease – autoimmune diseases don’t just go away, there is no cure and you certainly won’t grow out of it
  • sourdough bread is gluten free – not unless it’s gluten free sourdough
  • you can build up a tolerance to gluten if you have tiny amounts of non gluten free food – you won’t tolerate gluten, symptoms might be absent/moderate, but the damage is still done
  • if it doesn’t state on the packaging that something is gluten free, it’s not safe – check labels, if there is no ingredient that contains gluten then it’s perfectly fine and safe to eat it.