People often ask me… how did you know you were gluten free? What happens if you eat gluten? What is Coeliac Disease? What can you eat? What can’t you eat? How long have you been like this? And the list goes on!
I thought to honour Coeliac Awareness Week and answer a few of these questions, I would write a post on my gluten free story. I want to stress that I am not speaking on behalf of everyone who has Coeliac Disease. I found it affects each individual differently – my sister for example has the same condition but we have different symptoms.
So firstly, what is Coeliac (Celiac in the US) Disease? It is an autoimmune condition where the small intestine HATES (like really hates) gluten. It has a hypersensitivity to the protein which leads to difficulty in digesting food and can cause adverse reactions / symptoms which can make you feel very poorly. The body mistakenly attacks the healthy tissues and this makes it very difficult to get the nutrients you need.
To answer the question ‘have you had it all your lives?’… the answer is no. See picture above enjoying gluten filled doughnuts.
My older sister, Jen, was diagnosed first. She lost a lot of weight, and no matter how much she was eating she struggled to put it back on. At that point we didn’t even know what gluten was, we had never heard of it before. To get an official diagnosis, she would need an biopsy to test part of the intestine. She had the procedure and was officially diagnosed. This was in 2008.
It turned out I would need to be tested out of routine. But then it all started to add up. I had been ill for quite some time and had gone back and forth to the doctor with stomach problems and pains, my nails and hair were very brittle and I felt very weak and tired majority of the time – and I too really struggled to put on weight. So I was not that surprised when my blood tests came back with the exact same results. We figured, well our parents must have it? Lucky them, no they didn’t. The doctors told us it may have skipped a generation or their genes combined will have created it. We still don’t know which. Either way, I had the same biopsy procedure and was officially diagnosed in December 2009.
The only treatment is to eat a completely gluten-free diet. Which is of course, what we both did from that point on. I have been a Coeliac for over 7 years now and it was very frustrating at first. I think frustrating is a good way to describe it, because ultimately there is nothing you can do about it so there is no point moaning or feeling sorry for yourself because it’s not going to change anything and lets face it, out of all the conditions out there, I count myself very lucky to have only this *touch wood*! Really, in the grand scheme of things, it’s not that bad.
Not eating gluten made me feel better so there wasn’t much more to it. However, when I first went gluten free the awareness was nowhere near what it is now, the options were limited and it was pretty annoying to find the alternatives on the shelves tasted like cardboard… oh and they cost at least three times the price.
When you can’t eat gluten you can’t eat wheat, barley and rye, or any foods made with these grains. Some obvious examples being, bread, pasta, pizza, cereals, cakes, biscuits, beer, pastry, crackers, anything battered and random things like soy sauce and stock cubes you have to watch out for too. Oh and anything that has touched these foods. If you have a crumb, it can trigger your symptoms (well it does for me) so I have to have my own butter, use toaster bags for gluten free bread, use separate cooking oils / fryers and make sure surfaces are cleaned to avoid cross contamination. I still occasionally find a label on a jar saying ‘sorry been glutened, do not eat.‘ Ha.
The cross contamination issue is still the same, we do have to be very careful. But the awareness is so much more advanced now and the options are far greater, there are some fantastic gluten free brands that I love, such as Genius, Doves Farm, Udis, Schar and a lot of supermarket own brands are great (Tesco, Sainsburys, Waitrose, Morrisons etc) and they are constantly evolving. It is also now much easier to eat out than it was 7 years ago, increased numbers of restaurants have dedicated gluten free options and menus, or they at least know what you are talking about so can provide some tasty alternatives. There are still some exceptions to that of course, but overall I find the whole lifestyle a lot easier than it used to be.
If I do accidentally eat gluten it will make me ill, stomach problems and extreme cramps, run down and generally poorly (this is just how I react, everyone is different) – but the symptoms usually pass in a couple of days. This is not as bad as the potential long term effects – which include osteoporosis and a much higher risk of certain cancers, just to name a couple. It can also cause Vitamin D deficiency, which it turned out I had, so I have to continue taking regular medication to keep my levels up.
There is a difference between being Coeliac and wheat intolerant, some people do not have Coeliac disease but choose not to eat gluten as their body generally doesn’t agree with it, it might make them bloated or trigger IBS like symptoms. Which is why it has been a trending ‘fad’ in recent times, but for people like me, eating this way is not a choice! Don’t get me started on ignorant people who roll their eyes whenever they hear the words gluten free… this is real and is a necessity for many people wanting to live a healthy and happy life!
As time goes on I am finding it far less stressful and I am glad it makes me think about what I am putting into my body, something really everyone should be doing anyway! I love to bake and cook so have been enjoying the challenge and am constantly developing new recipes… and now through my blog I can share these with you and hopefully help / advise others in a similar situation. I have a tonne of gluten free recipes already HERE.
If you are gluten free by choice or a Coeliac too, let me know! What’s your story?
Interesting fact: Coeliac Disease affects 1 in 100 people in the UK and in Europe. It’s more common than you think, so stay aware!