Living with Coeliac Disease - My Story!

This will be a fairly long post about being diagnosed and living with Coeliac disease. For any of you not interested you don't have to read it, but for those of you who are and want to understand more about the illness or those of you who are fellow sufferers and want to hear someone else's story please keep reading!

So what is Coeliac Disease?..
"Coeliac disease is a life long condition. It is not an allergy or simple food intolerance but an autoimmune disease, which means the body's immune system attacks its own tissues. In Coeliac disease this reaction is cause by gluten, a type of protein found in wheat barley and rye." - (NHS Dietary Advice For Coeliac Disease Patient Information Leaflet)

Before my diagnosis...
I have various other health problems and have been suffering with them for 4 years now. About 2 years ago I started having excruciating pain in my stomach every time I ate a meal, I'd be curled up in a ball on the bed for an hour or so after eating, then as the time went on I started feeling sick as well as the pain, it was so horrible, I couldn't look forwards to meals anymore and I was afraid of throwing up. When it came to the point where I was throwing up a couple of times a week the doctors finally referred me to a gastroenterologist. He sent me for a blood test which came back that I had coeliac disease, however he said to get a proper diagnosis he would need to do an endoscopy and biopsy.



Being diagnosed...
The endoscopy was in November 2012 and I have to admit it was NOT pleasant. I had a fairly bad experienced and it really scared me. To make matters worse they forgot to take a biopsy, so in January 2013 I ended up having to have another endoscopy done, luckily this time wasn't as bad. However, I had already started to cut out the majority of gluten products and as I'd only had two weeks notice to put it back in my diet it only showed a slight sensitivity on the biopsy. This really upset me but due to my blood test coming back as highly sensitive to gluten they diagnosed me with Coeliac Disease.

Seeing the dietitan...
I didn't see the dietitian till august 2013 and so for 7 months I wasn't really sure what I was doing, I just checked labels to see if they contained gluten and wheat and if they did I avoided them. I felt much better from this but still not 100%. It wasn't until the appointment with the dietitian that I learned how much I had to avoid, she told me I was very highly sensitive to gluten and therefore I can't eat anything that contains Gluten, Barley, Rye, Wheat, Oats and if the label says "May contain..." or "Made in a factory that also handles..." I can't eat those products either.

Learning to live with Coeliac Disease...
I now had to change my lifestyle completely, this involved stopping enjoying foods I used to love such as; doughnuts, crisps (or chips as they're called in America), some chocolate, most cereals, yogurts, even things you wouldn't expect like gravy or sauces. I also had to get used to having separate butter, jam, peanut butter, mayonnaise, a separate toaster and using separate pots and pans etc. Then learning that if a plate or a surface has had products containing gluten on it, it is classed as contaminated and I am not allowed to touch it without wiping them down first.

Eating out...
When going to a family or friends house I have to take all my own foods, I then have to explain all the things I cannot do and all the things I have to avoid. It made me feel guilty because other people were having to watch what they were doing so they didn't make me sick but many people still don't really understand it very well. One of the hardest things however is eating out at restaurants, as much as there are more and more places now catering to people with specific dietary needs like Coeliac Disease, there are many places which do not avoid contamination.

Accidentally eating gluten...
The worst experience I've had so far from cross contamination was when I was eating out on holiday in Cornwall, I got a fruit smoothie from a very cute little shop by the coast and it made me so so ill, even though it had nothing that contained gluten, it had been cross contaminated as the people in the shop had been handling cakes and cookies. Soon after drinking some of the smoothie, my body felt weak, my head was spinning, I felt so so sick and the pains in my stomach were horrendous just like I used to have. After a couple of hours I ended up being sick. It was absolutely awful and just goes to show how sensitive I am now.

Dealing with it...
After that horrible experience of cross contamination I've been SUPER careful. I have gotten used to the strange texture of gluten free products and the annoyance of how easily the foods fall apart. I'm giving myself more options in what I can eat as I'm becoming more creative with my meals, creating and finding recipes which are gluten free alternatives to some of the things I used to love eating but no longer can. It's very hard and sometimes so frustrating, I just want to be able to go into a shop and not have to check every label, or go into a restaurant/cafe without feeling like I'm annoying the staff there by having to be so specific about my food. It is extremely hard but it's getting easier.

I will be doing quite a few posts with meal ideas and recipes that are gluten free and also write a food diary for a week of what I've eaten that day so you can see the variety in my meals and what my diet consists of. If you too suffer with Coeliac Disease, I hope my post has been relatable and comforting to read, it would be great if you could leave a comment to let me know your story too. And for those who just read this to see what it's like for a person living with Coeliac disease I hope you learned something and enjoyed hearing my story!