Coeliac Disease FAQ

by gfgirlmelb

What is Coeliac Disease?
Coeliac Disease is an autoimmune disease. It occurs when the bodies immune system incorrectly recognises gluten (a protein found in some foods) as harmful. This causes damage to the lining of your small intestine (bowel).

What is gluten?
Gluten is the generic name given to the protein found in wheat, rye, oats and barley.  Gluten acts like a glue, to help to hold foods together to stop them from falling apart.
An easy way to remember where gluten is found is by remembering the acronym BROW.
B is for barley
R is for rye
O is for oats
W is for wheat.

What happens when someone with Coeliac Disease eats gluten? 
When you eat foods that contain gluten, your immune system recognises this gluten (incorrectly) as harmful. It launches an attack, which causes damage to your small intestine. In a healthy, normal small intestine there are lots of finger like projections, called villi. These are like lots of helping hands, and help your body grab onto the nutrients from food, to ensure you are absorbing them. When you eat gluten, these villi are damaged and flattened (known as villous atrophy). So they are unable to grab onto important nutrients from your food and instead they just pass out of your body.

How do I treat Coeliac Disease?
Currently* the only treatment for Coeliac Disease is a strict, lifelong gluten free diet. It cannot be cured. However by eating a 100% gluten free diet, the condition can be managed effectively. The removal of gluten from your diet, allows the villi in your small intestine to heal. However if gluten is reintroduced, then damage and/or symptoms will occur again. This healing process can take up 2 years after diagnosis, and is different with every individual.

*I say currently, as they are working on vaccines (some work is happening in Melbourne) to stop your immune system from incorrectly recognising gluten as harmful, however they are still in clinical trials, and the end date is unclear, but it certainly looks promising!

Why did I get Coeliac Disease?
To develop Coeliac Disease you must have a genetic predisposition. There are two genes the HLA DQ2 and DQ8 gene that are present in people with Coeliac Disease.  You can have one or both of these genes however and never develop Coeliac Disease. Approximately 50% of the population have these genes, but 50% of the population do not have Coeliac Disease! Therefore the presence of the gene plus something in the environment triggers Coeliac Disease. However there is no consensus yet on what the exact cause is, and there is nothing you did or didn’t do that caused this disease. It’s not your fault! For me personally, I felt 100% fine until I was 16 years old. At the end of year 10 in high school, I started to feel really unwell, which didn’t resolve until I was finally diagnosed 3 years later!

Also if a first degree relative such as your parents, siblings or child have Coeliac Disease, then there is a 10% increased chance that you have Coeliac Disease. So family screening is important! Both my parents have been screened, through gastroscopies, and neither of them have it. My sister has not been tested, so at this time I’m the only one in my family with Coeliac Disease.

I think I have Coeliac Disease, what should I do?
First keep eating gluten and go to your doctor to request bloods to test for Coeliac antibodies.
If this is positive, the only way to confirm Coeliac Disease is through a gastroscopy. This is when you’re sedated or under general anaesthetic, and they pass a scope with a camera to your small intestine, to take a minimum of five biopsies. I found it a really quick procedure, with minimal discomfort. It’s not a colonoscopy, where you have to take Bowel prep in the lead up, and spend all day on the toilet.
Again make sure you’re still eating gluten, for an accurate diagnosis. You have to eat 4 slices of gluten containing bread or equivalent for at least 6 weeks before your gastroscopy for an accurate diagnosis. I know this can be difficult if eating gluten causes you terrible symptoms. So trying alternatives like drinking wheat dissolved in water, can help to ease your anxiety, just discuss with your gastroenterologist as to what they recommend. 

For some amazing fact sheets on diagnosis and what Coeliac Disease is, check out the Coeliac Australia website here. 

I’ve just been diagnosed, what should I do?
I would highly recommend joining Coeliac Australia. They’re an invaluable resource, with a welcome box, e-newsletter, quarterly magazine and yearly gluten free expo (dependent on your state in Australia). Plus they advocate for Coeliac Disease research, gluten free products and restaurant accreditations.

If you have a smart phone download the Coeliac Australia Ingredients application. There is a small one time payment, but it is invaluable when you’re first diagnosed and trying to read labels. If you join Coeliac Australia, they will also send out a paper version in their welcome pack, however the phone app is easier, as you can quickly search for ingredients you’re unsure on.

Visit your GP to discuss your recent diagnosis, and getting a Medicare plan (which someone with Coeliac Disease is eligible for). This will enable you to visit a Dietitian and receive a Medicare rebate. When picking a dietitian, choose one who specialises in Coeliac Disease for some individualised and tailored advice. You are also entitled to other services such as DEXA scans, but discuss this further with your doctor. 

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