The nature and severity of symptoms varies considerably from person to person, with some sufferers experiencing intense reactions to minuscule amounts of gluten while others notice nothing abnormal. However, it’s important to note that the severity of symptoms is not indicative of the damage caused by the disease, even asymptomatic sufferers are at the same risk of complications.
That’s why Coeliac Awareness Week – from March 13 to 20 – is aiming to increase public awareness of the disease and encourage Australians to assess their risk online.
We spoke to three women who shared their different paths to a diagnosis and it’s clear that no experience with coeliac disease is the same.
“I was so frustrated because I knew something wasn’t right but the local GP I was seeing couldn’t put it down to anything” – Brooke
Mid 2011 was when my symptoms started. I remember going to the doctors because I was almost certain I had glandular fever. I was in year 12 and had to drag myself out of bed every morning to get myself to school. The blood test results came back negative to glandular fever, however the blood test did show up iron, vitamin D and vitamin B12 deficiencies. I thought that may have been the reason I felt exhausted day in, day out but I wondered what was causing these deficiencies as well as all the other experiences I was experiencing such as reflux, severe bloating diarrhoea, brain fog – the list goes on. I struggled all through 2012 with my athletics performances plateauing and my motivation towards everyday activities declining due to feeling exhausted and unwell. From 2011 to 2012 I needed to improve my personal best in long jump by five centimetres to qualify for the London Olympics. This was a huge opportunity that slipped because my body was not functioning properly and it got to the point I could barely get through training sessions. I was so frustrated because I knew something wasn’t right but the local GP I was seeing couldn’t put it down to anything. In may 2013 my stomach pains, bloating and reflux got so bad that my mum took me to the doctors and advised I see a specialist. The specialist mentioned coeliac disease and sent me for a blood test and gastroscopy to confirm. These results confirmed coeliac disease.
Initially I felt quite emotional about having to make some major dietary and lifestyle changes, however in time I began to feel relieved. Prior to diagnosis, my quality of life was impacted as well as my athletic performances. For a year and a half, I was in and out of my local GP’s consulting rooms, getting multiple blood tests to try and put a finger on why I was feeling the way I was.
The frustrating thing was that every blood test came back normal besides some vitamin/mineral deficiencies. I felt like I was making a fuss over nothing, but deep down I knew something wasn’t right. It was a relief to finally figure out what was going on with my body and start the journey to get my health back on track.
I started my gluten free (GF) diet almost instantly with the help of Coeliac Australia. The first thing I did after my diagnosis was become a member of Coeliac Australia. Fortunately enough, my mum and myself went into their offices and they provided as much information on the transition from a diet full of gluten to a gluten free diet. The support from both coeliac Australia and my mum made the transition as smooth as possible. However a couple of weeks post-diagnosis, I had a trip planned to Taiwan for an athletics competition. This was an extremely challenging time for me as I still wasn’t entirely confident when it came to reading food labels and being able to identify gluten free food products. Especially when they were in mandarin.
This trip aside, I spent the remainder of the year in 2013 home in Melbourne trying to understand the disease better and I spoke with my dietitian about the best way to go about travel and everyday life dealing with coeliac disease. A diet plan and putting some strategies in place to ensure both travel interstate and around the world made this adjustment a lot easier for me.
There are a lot of misconceptions about what coeliac disease actually is. It is more than just a gluten intolerance. It is a lifelong autoimmune disease in which the small bowel becomes damaged and inflamed when gluten is consumed. The only way to treat coeliac disease is a 100% gluten free diet which means not even one bread crumb should be consumed.
1 in 70 Australians have coeliac disease, however only 20 percent of cases have actually been diagnosed. It is absolutely vital to raise awareness of the symptoms associated with this disease as it will hopefully allow for more people to be diagnosed and live a healthier and happier life.
“I feel like even after six years since I was first diagnosed I’m still learning how to adjust.” – Angelique
I was diagnosed at the beginning of 2014, the start of my last year in high school. I found out I was coeliac from a blood test which showed that I most likely had coeliac disease, I then went on to have a gastroscopy which confirmed I had it. The reason I had a blood test was to test a range of things as I was having dizzy spells, sensitive stomach issues and I always had low vitamin D and iron. My mum is Egyptian and dad is Polish – they’d never even heard of coeliac disease, so I was lucky to have had a GP with CD on the radar!
I never suspected I had coeliac disease. No one in my family or extended family on mum and dad’s side have it so it was not something we ever considered. Especially because the symptoms I had were not something we ever attributed to being coeliac disease. I considered myself as asymptomatic because I didn’t have extreme immediate effects such as feeling instantly sick after accidentally eating some gluten. This made it difficult as I felt like there was nothing strong to deter me from eating something with gluten however I knew I had to for long term benefits.
For me there was no real shock when I found out I had coeliac disease because I didn’t really know what it was or what it would mean for me. Knowing now what it’s like to have coeliac disease and the changes and restrictions I would have to deal with, I would’ve been a lot more taken back. Instead it's been a continuous learning curve.
I feel like even after six years since I was first diagnosed I’m still learning how to adjust. I still counter new situations that I have never previously dealt with since being a coeliac. For example when I travelled overseas for the first time, having to deal with a language barrier when trying to communicate what I can and can’t eat in order to see if there’s any options for me was challenging. I did not find it hard to not eat gluten as I knew it was doing harm to me and it became something I accepted that I was never allowed to eat not matter what. The real challenge was figuring out what had a gluten in it and I came to realise that I had to check every label from spices, to sauce and even drinks. There were so many things I wouldn’t check were gluten free because I assumed it wouldn’t be a problem however I’ve now grown to learn that I have to check everything for example even the powder that is used to make a hot chocolate at a cafe. The concept of cross contamination was also difficult. Having to get my own toaster, dedicated chopping board, pots etc at home was also something I didn’t realise I would need to do due to the severity of cross contamination in my own home, not just eating out. This means when I do eat out I have to question the waiter to make sure like at home, they have measures for tackling cross contamination.
I tell other people about the severity of coeliac disease and emphasise that it isn’t some kind of choice or diet fad. Coeliac disease is an autoimmune disease and living a gluten free lifestyle is my only cure. In the long term I will have life threatening problems unless I cut out gluten. I also take the time to explain the concept of cross contamination as I often get told to just “pick around the bread” or have “just a little bit”.
But people don’t understand once the food has come into contact with any kind of gluten it is not gluten-free and no longer safe for me. It becomes very frustrating when I go out to eat and food is labelled as gluten free because it’s ingredients make it so, but it isn’t prepared in a way that makes it safe for people with coeliac disease. In these instances it’s clear that the diet fad takes precedent over our medical condition. Although I have seen significant improvements in society compared to when I was first diagnosed I feel as though we still have a long way to go and the only way to help this is through awareness and education.
“I had no typical symptoms of coeliac disease. I was extremely tired all the time” – Angela
I would get through my day as a working mum but would fall asleep as soon as the children were in bed and could never see a movie through in the evening! I was diagnosed through a low ferritin blood level (one of the tests taken to check your iron levels). My initial GP said it was just a case of being a tired mum and gave me iron tablets which brought my ferritin level up a bit but I changed GPs as I am a scientist and I wanted a GP to check why my iron levels are low not a quick fix. I went to an excellent rural GP and he suspected coeliac, did the bloods that detect coeliac and they were very high antibody levels. He referred me to a gastroenterologist who did a colonoscopy and I got my diagnosis.
I was actually quite shocked and a bit in denial but I was advised to join Coeliac Australia to find out more about this disease and to immediately go on a gluten free diet. I am eternally grateful to Coeliac Australia for membership recommended by my gastroenterologist.
I was also grateful that I didn't have a diagnosis of cancer so 'just' having to go on a GF diet rather than having to deal with medication was enough to make it bearable. A bit hard to adjust at first but knowing how you can hurt your body in the long term by not going on a GF diet is enough to keep me on the straight and narrow.
I miss the lovely soft bread and the occasional cake from the bakery but the bread recipes are getting so much better and there is a lot more choice now. I don’t get symptoms apart from low ferritin so it is hard to know when I am accidentally ingesting gluten e.g. in sauces and gravies. I have a gastroscopy yearly and blood tests every six months so far to check I am not ingesting gluten. My antibody level in my blood is much lower than the initial tests but there is a small amount there. I find the Coeliac Australia app on my phone from the Coeliac Australia very useful when out shopping for food.
If you have no symptoms but feel tired a lot of the time, then please ask for coeliac antibody tests and if your GP refuses find another GP who will test you. Also, another indication is low vitamin B12 and low vitamin D as the reaction to gluten can cause your intestines to not absorb these vitamins and iron.
If any of these symptoms ring a bell, speak to your GP.
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