My Story
I have been a Coeliac for over 7 years now, having been diagnosed when I was only 21. After several years of chronic pain, laying in the fetal position, many many days off of work and months turning into years fighting with the Doctors, I was finally diagnosed with Coeliac Disease. Don't get me wrong it wasn't quite as simple as that!
For several years I and my Mum had to keep repeating ourselves because we were always faced with the same answers 'You have IBS', which from what I have gathered is a generic response they give to many people with stomach issues. Needless to say, it wasn't that!
Now like many people I did not know what Coeliac Disease was, and even remember walking past the free from aisle when I was a lot younger, thinking what the hell is that for. So when I was officially referred to the gastro clinic to have the Endoscopy I decided to actually look at what Coeliac disease was. I was horrified when I finally realised it was going to be an extreme life change.
What is Coeliac Disease?
It is an autoimmune disease, which in simple terms means, when I consume gluten either by eating or drinking, my body attacks itself. Thinking gluten is a bad thing coming to infect/ attack my body. So when my body attacks itself, it eats away at these little hairs called Villi found in the lining of your small intestine. These Villi allow nutrients etc. into your bloodstream. So when these are broken down, they essentially close up these routes. Kind of like creating a hose pipe,stopping your body getting all the good stuff it needs.
If left untreated it then leads to malnourishment, illness and can cause death, as well as some cancers. Everyone has different symptoms when ingesting gluten, so it can be difficult to diagnose. I was constantly ill, for example, I would get a cold and have it for like a month finally get rid of it then get another one! I was in constant pain and was so bloated that even my brother asked if I was pregnant! By constant pain, I mean I was usually in the fetal position rolling on my stomach crying with such chronic stabbing pain. I cannot describe how much pain I really was in, that no amount of painkillers or medication would touch it.
What is Gluten?
Gluten is a protein of wheat. It has many common names such as,
- Gluten
- Barley
- Rye
- Durum
- Spelt
- Cereals
- Malt
- Bran
There are many other names for Gluten which are uncommon, for a fuller list download this checklist.
The best way to think, is to think it is in everything and check everything! Another rule I live by, is if it says it may contain then don't have it. If it said that it 'May contain RAT POISON' would you risk it? No, you wouldn't so why risk gluten, it is poison for a coeliac.
Is there a cure?
Well I hate to break it to you but there is NO CURE! The only way to DEAL with Coeliac Disease is to have a strict Gluten Free Diet. Easy you say??? Think again! The dietitian was helpful, however I still feel that they could do more to provide better support and transition into the diet.
What happens if you're Glutened?
If you're Glutened then you may experience pain, cramping, diarrhea, constipation or other symptoms. The thing is no one is the same, the only thing that is exactly the same si what happens inside our bodies. Our villi will be broken down again, but if it was just a one-off attack they will grow back again within 6 weeks.
My Experience Living a Gluten Free Life
It is so HARD! I find it so much easier now that when I was first diagnosed, but it does still hit you every now and again just how hard it can be.
The range of Gluten Free foods has widened greatly over the past 7 years, however, it is still not totally catered for. You still find that some products are only seasonal and even then they may end up being discontinued for good.
One of the hardest changes for me was going from eating whatever you want to having to read every single label to check for pesky Gluten and/or having to plan ahead with whatever you do just in case you need to bring your own food...
The first year was the worst and most depressing for me, I didn't have the best partner at the time which made me feel even more alone and depressed. Well I'll be honest I have never had a great partner since being diagnosed for support in the area, I would cry in the Supermarket when trying to get my head around what I could and couldn't have.
I got Glutened fairly early on in my new diet when I asked for a Jacket Potato with Cheese What has Gluten in it??? The Cheese, believe it or not, many pre-grated cheeses have flour in to keep the bits of cheese separated!
I even found out that after a few months I was lactose intolerant, which is fairly common for newly diagnosed Coeliacs, as the small intestine is so badly damaged that the lactose cannot get through like normal people. So not only did I have to cut Gluten out I now had to cut out lactose! This made it so much harder for me to deal with. Thankfully I was able to re-introduce lactose back into my diet after a year or so.
One of my Ex's mother (was crazy anyway) decided she would tell me she didn't care and wouldn't cater for me and I should just eat whatever she cooked. This made my life harder too, however she eventually came around and was very good with cooking.
Common Misconceptions
The most common thing people say to me is 'oh so you can't eat bread', well done you have solved it all for me! Like it's not that hard, well let me tell you it is in practically everything!
Just to clarify, I can eat bread so long as it is Gluten Free and I can eat a fairly normal diet so long as everything is Gluten Free.
Another common issue people rarely think about is Cooking... What possibly could be the issue here you say??? Well, cross-contamination... Just think Peanut Allergy... I cannot have even a crumb come in contact with my food. You even have to change all your utensils... wooden utensils cannot ever be truly clean. Germs and Gluten ingrain into them. I use silicone utensils for everything now!! Although I have bought myself my own wooden rolling pin, which is only used for gluten-free cooking.
Anyway, I am babbling, so just think, buffets? I cannot go to buffets! You cannot control whether someone has used the utensils for just the bacon or whether they have picked up some bacon and then picked up some sausages and bread with the same one. You can also not tell whether they have accidentally touched the rest of their food with the utensils and then put it back. Do you see what I mean when I say this is so complicated and can seem so anal! If I do go to a place with a buffet I have to ask the waiters for a fresh plate of the items I want/ are Gluten Free.
This can also be very difficult when you go to eat round someones when you start telling them what they can and cannot use, they get defensive and think you're just being a controlling. They don't seem to realise that one tiny mistake can make you externally ill and take me out for over a week or sometimes more!
Whenever I am asked to go out or want to go out, I have to find out where. I have had several responses from people asking me why do you need to know? Why can't you just come along? Why do you have to take over? Well, I am doing none of those things and need to know because I need to check that the place in question can cater for me. If not I will have to eat beforehand or just not come along. It makes meeting new people very hard for me, having to explain all this to a new person and having them look at you blankly, probably thinking what a fussy cow.
I also hate how we have to call it an 'allergy' for people to understand the severity of the situation! You say 'I have an allergy to gluten' just so you don't have to relay all the spiel over and over again. Why can people be so narrow minded, and why can't people research it themselves. There is also the issue of these fad diets and people who choose to eat Gluten Free. These people make us look like we are being fussy, oh not another Gluten Free person... making it difficult for us Coeliacs to get across the severity of our situation.
Thank you so much for taking the time to read this and for putting up with my moaning.
What are your thoughts? How has Coeliac Disease affected you?
Originally published in December 2015.
Always be kind, you never know what personal battle people are fighting.
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