If you have coeliac disease, then chances are you’ve had more than one conversation with loved ones about some of the symptoms that accompany this autoimmune disease. You might have said a little too much to Uncle Bill at your last family get together, about your body’s inability to decide if it wants to be constipated or have diarrhea after eating gluten by mistake. Did you really compare the size of your bloated stomach with Aunt Betty’s pregnant belly?
Lynelle had no symptoms at all before she was diagnosed with coeliac disease.
In all seriousness though, the debilitating symptoms of a poorly functioning gastrointestinal system can have a huge impact on your life. But, what if you had coeliac disease and you didn’t have any symptoms at all? For Lynelle King, this was the case. She didn’t recognise that she had any symptoms, and it was only at the urging of her sister, who was diagnosed with coeliac disease in early 2013 that she went to get herself tested.
“Early in 2013 my sister emailed all of our family after getting a positive blood test for coeliac disease and suggested to all of us to get tested. I was an ignorant mid 20 year old and didn't believe I would have it. It wasn't until the end of 2015 that I decided I had better listen to my sister and had a chat to my doctor and yep I got a positive blood test for coeliac disease too. As the blood test is not 100% and that I didn't have any symptoms I felt it best to do the biopsy test which confirmed for me that I was indeed a coeliac.”
Coeliac disease is a hereditary disease that runs in families.
According to Coeliac Australia, first degree relatives of someone with coeliac disease have a 10% greater chance of also being affected, so family screening is really important. Just like Lynelle, family members might not even realise that they are unwell, especially when they have been dealing with mild symptoms for a very long time, they may have normalised the little niggles assuming it is just life. However, after diagnosis these ‘silent’ coeliacs can usually use hindsight to identify how they were being affected. For Lynelle, she noticed that she did start to feel differently. “…As time went on I started to feel like I had more energy and less sluggish.”
A gluten free diet can be challenging, especially in a mixed household.
Needless to say, the benefit of diagnosis is that treatment can begin, the healing can start and quality of life will improve, but as anyone who follows a strict gluten free diet knows, there are some challenges to overcome – there’s a good reason why #coeliaclifesytle is used so often! Lynelle’s transition to a gluten free diet also had its difficult moments. “At first all I ate was foods that were naturally gluten free as I was not sure what was safe for me to eat. Only a few months in I met a beautiful lady who is also coeliac and had been since a child. We have become great friends and she helped teach me what I could and couldn't eat, also helping expand my gluten free cooking knowledge.”
These days Lynelle, who does most of the home cooking, says she mostly makes gluten free food for her family. However, she does allow some gluten into the house. “I allow gluten wraps and weet-bix to be consumed on a daily basis and on occasion I will buy gluten bread rolls for my family when burgers are on the menu.” This compromise allows her to keep her cooking environment safe and uncontaminated while also still allowing her non-coeliac family to enjoy gluten containing foods.
When it comes to eating out, Lynelle’s concerns echo those of many coeliacs.
Lynelle says that more understanding by the wider community is needed. “I wish it was understood by everyone that it is not a choice and it is a serious illness that makes many coeliac's very sick at any contamination with gluten. It's not something we make up to be difficult. It would be nice to have a clear definition of yes, this restaurant or cafe are aware and are doing what they can to be coeliac safe, or if they can't guarantee the safety then just say no we do not offer gluten free food. Don't half heartedly do it as that can make us sick.”
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This piece is one in a new series of interview articles that we will be showcasing in the coming months to raise awareness of coeliac disease and support the coeliac community. Would you like to share your coeliac story? Send us a message via the contact us page to let us know you are interested.