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Monday, 9 May 2016

Coeliac Awareness Week - My Coeliac Story


This week it's Coeliac Awareness Week and as I have this disease I felt like it would be the perfect time to talk about my experience with coeliac, my symptoms, how I was diagnosed, how I cope with it, how it still effects me and how I dealt with the lifestyle change you have to make once you're diagnosed.


Every day more and more people are cutting gluten out of their diet, in fact in the UK alone 1 in 3 adults are currently actively avoiding gluten. Some people do this as it's been made a bit of a 'health trend' and lots of people do it to feel healthier. Whilst it's true that gluten intolerance is on the rise, thanks to the modernisation of grain production, many people do misdiagnose themselves with gluten intolerance when it could actually be something completely different giving them the symptoms. Cutting gluten from the diet can make you feel healthier and you'll probably have more energy but it isn't necessary unless you have a medical condition such as coeliac disease.

Before I move onto my experience with coeliac disease I thought I'd give you a bit of information on the condition as it's a disease I don't think many people understand.

What Is Coeliac Disease?
Coeliac Disease is a life-long autoimmune disease, it's not an allergy or an intolerance to gluten but a condition that causes the immune system to react to gluten. When someone with coeliac disease consumes even the tiniest amount of gluten it triggers an abnormal immune system response that damages the small intestine. Your small intestine is lined with tissue called villi, the villi is what helps your body absorb vitamins, minerals, sugars and other nutrients as food passes through your system, when a person with coeliac disease eats gluten the villi flatten out and the intestinal lining becomes damaged which decreases how much nutrients you absorb, this causes all sorts of problems such as fatigue, anaemia and even osteoporosis.

What Are The Symptoms Of Coeliac Disease?
The symptoms of coeliac disease vary from person to person but the most common symptoms include  persistent nausea and/or vomiting, stomach pain, cramping, bloating, fatigue, brain fog, diarrhoea or constipation and in some cases weight loss. The symptoms range from mild to extreme and can last anything from a couple of hours to a few days. Coeliac disease is known as a 'multi-system' disorder, meaning symptoms can affect any area of the body.

What's The Treatment For Coeliac Disease?
Unfortunately there's no cure for coeliac disease (I'm hoping they find one some day!) and the only treatment is following a life-long strict gluten free diet. Once you start your gluten free diet your symptoms should improve almost immediately but they can take up to a year to completely disappear.
Even small amounts of gluten are very damaging to someone with coeliac disease so it's important to not only not eat gluten but avoid cross-contamination in restaurants, don't use the toaster, use different kitchen utensils and make sure kitchen surfers are clean before cooking.

Now you know more about Coeliac disease I'll tell you my coeliac story.

How I Was Diagnosed 
I was diagnosed with coeliac disease March 2015, the day after my birthday in fact, so I've been strictly gluten free for well over a year now. I'd been suffering with horrendous stomach pain for years beforehand that just got increasingly worse and I really started to notice something was wrong early 2014. At first I didn't realise what it could be and having been diagnosed with PCOS only a little while beforehand I put down most of the symptoms (stomach pain, fatigue, etc) to that but I soon realised certain foods were the problem. After eating gluten I'd become extremely bloated, my stomach would swell up so much I looked pregnant and it was unbearably sore, I'd also feel violently sick, have dizzy spells, the worst brain fog and chronic fatigue. I cut gluten out of my diet, not strictly but I actively avoided it as much as possible, but after several months of this I decided I needed to go to the doctors as my symptoms were still consistent. I went to the doctors several times before they eventually decided to test me for coeliac disease, as soon as I read up about coeliac I knew it was what I had...everything fit and I just felt that is what was happening to my body.

To be diagnosed with coeliac disease you have to have been eating gluten for at least a few weeks beforehand to ensure you get a true result. As I'd been avoiding gluten I was told to start eating it again every day for 3 weeks before I could have my blood test, as you can imagine this was absolutely horrendous. I started consuming gluten and immediately felt even worse than ever before  - I was so tired and lacking in energy I found it hard to climb stairs or hold a glass of water, my stomach got so swollen I felt like I had to wear baggy clothes to disguise what looked like a baby bump, the pain in my tummy was so bad it made me cripple over and the brain fog I experienced resulted in me barely being able to string a sentence together. At this time I was working in a local shop and I remember trying to work the delivery and going so dizzy I thought I was going to pass out and costumers continuously told me I looked really unwell. After 3 weeks I was so relieved I could just have the blood test and find out for sure whether it was coeliac disease or not! The results of the blood test took 2 weeks to come back but the day after my 20th birthday I had a phone call from the doctor who informed me the blood test had come back positive, there were antibodies in my blood that confirmed I had coeliac disease.

I was told to make an apportionment to go and see my GP to discuss the diagnosis. I have to say that the doctor was most unhelpful and practically just read things out to me that she'd printed off the internet! But she explained I had to completely cut out gluten from my diet, that it would take at least a couple of months for symptoms to go and to feel well again and it would take my body a little while to repair the damage done to my intestine. She explained about the possible complications of coeliac disease too such as the increased risk of osteoporosis, anaemia and certain types of cancer. I left the surgery feeling overwhelmed but at least I had answers.

How My Lifestyle Changed
Before my diagnosis I'd been used to eating a gluten free diet anyway and I've never been someone who eats much bread, biscuits or cakes anyway but the thing I did find challenging was avoided cross contamination. When you have coeliac disease you have to be so careful you don't consume even the tiniest bit of gluten as even a small crumb can cause damage to your gut and cause symptoms to return. I'm very lucky that my family don't tend to eat much gluten either but when there is gluten in the house it's important I stay well away from it - I can't use the toaster anymore, I have to use a separate chopping board, I use different utensils and my family have to use spoons to get jam, almond butter, peanut butter or hummus out of pots rather than the knife they're using for their bread.
Eating out is tricky too and it's actually the thing that bothers me most about having coeliac disease, I used to love eating out but I'm so limited to where I can go now because not only is there not many restaurants that have gluten free & vegan meals on the menu it's also almost impossible to avoid cross contamination. A few months after being diagnosed I had a meal out at a beautiful vegetarian restaurant in Brighton, I explained to the waitress that I had coeliac disease and told her about the risks of cross contamination, she assured me the kitchen would cook my food separately and I felt happy with that. The next day I was suffering with horrendous stomach pains and fatigue, I contacted the restaurant who told me that the kitchen hadn't been informed of anyone with coeliac disease being there and the 'gluten free' bread that I had would have been cooked in the same area as normal bread....it goes without saying that I was furious!

Cutting Out Dairy
I'd cut down on my dairy intake dramatically after I was diagnosed with PCOS to help my skin clear up but I was still occasionally eating cheese and products that contained milk like chocolate, but I knew my body didn't like dairy and I found out that if you suffer with coeliac disease you're also a lot more likely to develop lactose intolerance. Lactose intolerance isn't like coeliac disease, it doesn't do your body damage but it causes symptoms like bloating and abdominal discomfort which I experienced whenever I had dairy so I decided to cut it out altogether to help my body heal. As soon as I cleared dairy from my diet I felt so much better - I had more energy, my skin improved, my digestion was better and I didn't miss it at all.

How Long It Took Me To Feel Better
It took me a long time to feel well again, I'd say around 8 months after my diagnosis I was practically back to normal but before then there were lots of ups and downs. My intestines and digestive system had clearly been damaged quite badly from the gluten and it's only recently that I feel like my digestive health is good and my body is functioning the way it should be. I did things to help this like eating a really natural diet, cutting out any processed foods and alcohol (not that I had much anyway), drinking lemon water in the mornings and practising yoga. I felt like it was important for my diet to be as healthy as it could be especially in the few months after my diagnosis, my body had gone through a lot and it had a hard job ahead of it trying to repair the damage done so I wanted to help it out as much as I could.

How Coeliac Disease Still Effects Me
Even though the worst of my symptoms have gone Coeliac Disease is always going to be something that effects me. I mentioned earlier that I had been working in a local food shop, I handed in my notice February of this year and part of the reason for that was because being around gluten from the bakery and bread on the shelves was causing coeliac symptoms...yep, I'm really that sensitive to it! I was at work a few weeks before I left and a bag of flour kind of exploded and all I had to do was inhale some of the flour, the next morning I was sick and my stomach had swollen up.
Coeliac disease isn't a nice thing to have at all and it puts a downer on social events, eating at a friends house and it can be a little pricey but the more time that passes the more I learn and the more my body heals. It's a disease I think more people are starting to become aware of too which hopefully means eating out will become easier over time!

The Positives
After being diagnosed I started to take my health and wellbeing more seriously, it made me realise how much I needed to look after my body which helped me discover my love of healthy food and fitness that's now become such a passion of mine and it's something that makes me feel so happy. It's also the reason I set up my NourishingAmelia instagram page which then lead to my blog....so that's a big positive! I started cooking after I was diagnosed too, partly so I knew exactly what was going into my meals but to experiment too and create healthy, gluten free alternatives to foods I wouldn't otherwise be able to eat.


Having coeliac disease isn't something I can change so I try not to dwell on it or think about the things I can't do, the foods I can't eat and what I might miss out on. Instead I look at it as a part of who I am, something that's shaped me into the person I am today and a crucial part in my journey to a happy, healthy me.

More information on Coeliac Disease -
NHS - http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Introduction.aspx
Coeliac UK - https://www.coeliac.org.uk/coeliac-disease/




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