Monday, 21 December 2015

Being a Coeliac in a World of Fad Diets

I will apologise now for the length of this post, however if you have anyone in your life with Coeliac Disease please please read this as it will defiantly open your eyes, I also hope my friends and family will take the time to read this and understand me a little more.

I have been a Coeliac for around 5 years now, I was diagnosed when I was 21. After years of chronic pain and fighting with the Doctors, with them saying 'you have IBS' which from what I have gathered is a generic response they give to many people with stomach issues, I finally got through to them and was referred to the hospital for tests.

Now like many people I did not know what Coeliac Disease was, and even remember walking past the free from aisle thinking what the hell is that for. So when I was officially referred to the gastro clinic to have the Coeliac test 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 auto immune disease, which in simple terms means that when I consume gluten either by eating or drinking, my body attacks itself thinking gluten is a bad thing coming to infect my body. So when my body attacks its self, it eats away at these little hairs called Villi found on the lining of your small intestine, which allow nutrients etc. into your bloodstream.  So when these are eaten away they close up these routes for your body to get all the good stuff it needs, effectively creating a solid pipe from one end to the other.

This basically leads to malnourishment, illness and can cause death and cancers if left untreated. Everyone has different reactions before being diagnosed, I was constantly ill, I would get a cold and have it for like a month finally get rid if 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.

What is Gluten?

Gluten is a protein of wheat. It has many common names like,

  • Gluten
  • Barley
  • Rye
  • Durum
  • Spelt
  • Cereals
  • Malt
  • Bran
There are many other names for Gluten which are uncommon, for a full list download this checklist.

The best way to think, is that it is in everything and check everything!

What is the 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.

Living a Gluten Free Life

It is so HARD!

Now from when I was diagnosed to now the range of Gluten Free food has widened greatly, however it is still not totally catered for.

Going from eating whatever you want to having to read every single label to check for the pesky Gluten or having to plan ahead with whatever you do just incase you need to bring your own food...

This was extremely depressing for me and the first Year was horrible, I didn't have the best partner at the time which made me feel even more alone and depressed. 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 have flour in grated cheese packs 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. thankfully I was able to re-introduce lactose back into my diet after a year or so.

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.

The most common thing people say to me is 'owh so you can't eat bread', well done you have solved it all for me! Like thats 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 lots of stuff just has to be Gluten Free.

Here is another common issue people rarely think about, Cooking... What could possibly 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 cleaned germs and Gluten ingrain into them. I use silicon utensils for everything!! 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 or what to out where, they get defensive and think you're just being a cow. They don't seem to realise that one tiny mistake can make me 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 before hand or just not come along.

This also makes it very hard for me when I meet new people, 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 also 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, not another Gluten Free person... making it difficult for us Coeliacs to get across the severity of our situation.

Another gripe of mine is that Vegetarians are much better catered for than Coeliacs and are more commonly than not treated better. Chefs worry more about getting a complaint about meat being on a vegetarians meal than about cross-contamination for a Coeliac. I understand that Vegetarians need to be catered for but come on it is a CHOICE not a requirement because of your health!!

Thank you so much for taking the time to read this and for putting up with my moaning.

What are your thoughts? Do you suffer from anything?

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