Hi, I’m Coeliac… and my life is not as easy as it used to be

You’re about to read an article about personal and social consequences of living with Coeliac Disease (CD), about everyday struggles and attempt to make conscious eco-friendly choices while on a Gluten Free (GF) diet

The letter with official diagnosis was delivered to my doors on Christmas Eve 2017. It was the last Christmas when I enjoyed eating a traditional Polish style Christmas dinner. Poland is the country I’m originally from, the country where flour is the base of the everyday menu. Unfortunately this is something what is triggering my immune system reaction which is confused and in response destroys itself, destroying my body from the inside.

What does Coeliac Desease is?

Following the NHS description: Coeliac Disease (CD) is a common digestive condition where the small intestine becomes inflamed and unable to absorb nutrients what is caused by an adverse reaction to gluten. It affects about 1 in 100 people, but just 30% are diagnosed and aware of their condition.

So I can feel as a lucky person, but bread, pasta, cakes, sandwiches, most of ready made meals, all the stuff I used to eat, or in the moments of desperation I could grab as a fast snack during a busy day… I had to cross out from my menu.

It’s not the end… quite often Coeliac Disease (CD) it’s followed by lactose intolerance, so I don’t have to ‘suffer’ from too big choice of products containing milk like cheese, yogurts or chockolate… I may have few types of dairy or lactose free products and eat it till the end of my days. Fun, isn’t it?

By discovering my CD, not only I had to reintroduce my New Self to myself but also had to start introducing myself more precisely to other people, sometimes those just randomly encountered, people I usually do not feel like sharing my life story with…

Is it all about food?

Yes and no. It’s also about everyday life, our relationships with others and the way how we, Coeliacs have to live.

European culture (the one I know, I’ve been raised and live in) is mostly about food. We not only eat food to survive but also to socialize. When we celebrate, we eat, when we’re sad, we eat… when we meet with family and friends… we eat or feed others.

Eating out

Ordering food doesn’t take 2 minutes as before. Now I need to investigate what I can or cannot have and how they are preparing ‘GF’ meals

I’m more an introvert (or I was?), so in the beginning, it was really difficult for me to go through this whole conversation with the waiter/waitress. I preferred to go only to places which had GF clearly marked on the menu to avoid the conversion with staff (although it’s not so straight forward). If I was going to eat out, what I don’t too often I felt really unpleasant. But few times while traveling I had to go to the new place and needed to have this chat. With time it got easier but ordering food doesn’t take 2 minutes as before. Now I need to investigate if they do gluten-free stuff (but not commercial-fashion-diet GF) I need to know if they know what a Coeliac disease is, how serious thing is cross-contamination etc.

You may not know what a cross-contamination is. I had n idea about that before my diagnosis. The sad fact is that even tiny amounts of gluten may make people with CD to experience various symptoms in the short term and gut damage in the longer term. What means that we can be on gluten-free (GF) diet for months and eating food with a trace of gluten, even a breadcrumb can make us suffer.

Cross-contamination and ignorance are problems Coeliacs are facing most often.

“A little bit of gluten won’t hurt you, it’s not like you could die like a proper allergy”

After hearing such comment you either need to leave or explain that person saying that is wrong. Very wrong! I’m usually going for the second option- trying to explain as educating is a way to show people how serious it is and this way you’re making them more conscious. The side effect is that in the future they will be more understanding and careful and other people with CD will be safer.

If you decide to not react to a such a remark that bit of gluten won;t kill you, and agree on little bit of gluten in your food you’re harming not only yourself but also others, future clients who will have more and more difficult job as the staff will be saying that many people don’t mind. (Yes, it’s the real life situation and I believe everyone with Coeliac Disease has it at lease once in a while).

So if next time someone will say you’re being dramatic and little bit of gluten won’t kill you, you may say what Zulejka suggests:

‘Yes is will kill me, slowly and painfully over years and years, it causes me pain and destroys my internal organs and if you don’t think that’s serious I suggest you go and look it up’

If you are recently diagnosed, the person serving you may know more and can look at you oddly when you ask about ‘obvious’ gluten-free food, but if you have a doubt, you need to ask- it’s about your health.

Quite often I meet people who know a lot about Coeliac and are reassuring me that they’ll change the oil so I can eat my fried something without any worry. It’s great, I feel they care, but from the other hand I feel like I’m putting too much on their shoulders… especially when it’s about family or friends who are trying really hard…even if they are trying their best … but forgot themselves in a process of baking and add a bit of breadcrumbs to stop the cake from sticking to the form…

I went through that recently while I was visiting parents of my wife and I had to turn down their amazing veggie ‘pate’ because of this little cross-contamination. I know they gave a lot of time and effort, used proper ingredients but this ‘tiny’ mistake made in inedible for me.

With CD you need to develop a thick skin and work on your assertiveness not to break even under the charm (or emotional blackmail) of your grandmother…

Sometimes people still don’t get it, but as soon as I give a real life example and say I actually have neurological problems caused by 33 years of eating gluten, and I can’t have it any more, because I like when I can feel my hands and hate when I feel the numbness and pain in my muscles… After such explanation most of the people understand that it’s serious.

Technical difficulties

I’ve never had to tell about myself so much just to be able to eat something. Hunger may be dangerous, especially for people who are around me at the time. My wife knows that, this is why when we go for a trip we always have something to snack or if it is a day trip we have an emergency lunch in a box in case if we weren’t able to find a place with GF food. It sounds funny, but the worry that we’ll not be able to find a suitable place to eat on time was stressing me out even a day before the journey. This kind of the food anxiety may ruin your trip… Few times before we worked out our ‘travel routine’ I felt I’ll start crying when in little M&S where they didn’t have GF section, just GF food was spread all over the place and being outrageously hungry I couldn’t find anything and felt like I was looking for a poppy seed in a desert…

Yes there is GF food- quite often artificial food, which is with triple amount of sugar and other fluff and feels and tastes like dust…

Yes, I can have a nice GF food, but then I need to prepare it by myself and spend a crazy amount of time in the kitchen cooking, what feels like a big waste of time. But if there’s no other option, I have to accept it and do what’s the best for me. I also have a great support of my wife who changed her habits for me so our home is mostly a GF zone.

Now, knowing I have CD I have no option but to eat healthy… and expensive…

Wandering in the labels maze

Nowadays even food which naturally is GF my be cross contaminated because is processed in the factory where gluten containing products are present… or wheat is added as an extra to stuff it, to earn more money with less effort…

I really like the idea of Zero Waste shops where you can buy as much stuff as you need, weigh it and put to your linen bag, but it’s no longer an option for me. Potential cross contamination makes it so risky for me that with a bleeding heart I need to buy products which are originally packed and preferably with a GF mark.

Food industry is cheeky. GF sign is good, but usually you need to know it will come with 20% extra on top of the regular price. Sometimes you may be lucky and see that a regular product is as well GF, but to do that you need to get used to play a detective and study deeply every label. Sometimes you may come across the names of used substances which are so scientific that you need to perform a follow up on the internet to see if they are related somehow to gluten. This is why it’s worth to join few Coeliacs group, especially local ones, where people share all the information about new products available or little new discoveries.

Explain yourself

I never had to explain that I can’t have amazing local beer, can’t have this birthday cake, or my grandma’s burger. I was eating everything. Till now. I wasn’t picky with food. … till now.

With a Coeliac diagnosis, I had to change my personality a bit. I had to become more open and assertive. Luckily I had an experience with educating people (thanks to the clients I worked with and whom I had to explain the web design stuff to) so explaining in an easy way what Coeliac disease is and what it causes is not so difficult task now. I’m not so keen on letting people know what may happen if I accidentally have gluten (usually it’s the unpleasant desire to spend a whole day or few in the toilet and… well usually you do not feel like sharing your digestion, gastric affairs with random people)but for my own safety I have to do it sometimes. (Although, the toilet part is just a tip of an iceberg as the reaction to gluten triggers an auto immune reaction and my organism is trying to destroy itself in many sophisticated ways.

I was ‘lucky’ to have neuronal symptoms in my mid thirties (what with my medical history has lead my GP to the initial diagnosis). Yes I had all the stomach problems over all of my life but it was something I got used to and haven’t seen as a problem. My neuro problems were reversible and after a year of strict diet I feel way better but still not ideal. I’ve heard about people who experienced that in their sixties and full recovery wasn’t possible and they became disabled. Yes, it may happen if you ignore it or are not diagnosed early enough (or you are so called a ‘silent Coeliac’.)

Family and friends… and a small talk

With CD, you can socialize with people, but quite often, well almost always at some point the conversation will focus on your condition. Now I know that the question about my diet will come up and I will have to talk for about 20 min how I cope… and all the stuff. It’s like a part of the game, you need to wait till it’s over and you can go on with classical socializing process.

I find personally all my friends and family very supportive. They started to cook GF food or are planning meetings in places where they have GF menu or I can bring and eat something. It’s annoying for me that I feel like an obstacle in a spontaneous evening out, but… I just need to get used to the fact that I can’t have this, what most of the people can… but on the good side… high prices of GF and lactose free sweets stop me from eating too much stuff which would not be burned during my weekly swimming sessions.

In general CD is a condition you can live with just need to be cautious and patient. After a while you can get used to it and live as you used to just without the pain and other symptoms you were suffering from before the diagnosis. But let’s be real, you can get gluttened and then… well perhaps one day I’ll have time to write a bit about this experience every person with CD experience from time to time.

If you have any question or a comment about a Coeliac Disease feel free to write a comment. I’m still new to this stuff, but trying to live my life as good as possible, educate non-coeliacs and share experience with other Coeliacs who are having same problems.

Coming Next… Party time! - a survival guide

Going to the party might be a challenge. I already had few house parties where I just brought my own food (and had to explain few newly met people why I had to do so…) It’s tricky but possible. Next month I’ll share with you few party tips which will make your time more enjoyable and help you to keep number of questions to minimum.

Coming soon… Holiday time! — a survival guide

In December I went for my first real holidays since I’m on the GF diet… It was a lovely week in Madeira hiking and traveling between various mountain villages. I survived and wasn’t staring, but it wasn’t as easy as it used to be. Soon I’ll write bit more and give you few tips on how to get ready for such a trip.

Thanks for reading, have a great day!