What it means to live with Gluten/Wheat Intolerance

I thought I would share what it is like living with gluten/wheat intolerance. Some of my close friends/family may already know some may not.

The small intestine of a person with coeliac disease is sensitive to gluten, which is a protein component of the grains wheat, rye, barley, triticale and oats. Even small amounts of gluten can cause harm. When the lining of the small intestine is damaged, nutrients are poorly absorbed. If left untreated, this can result in a range of disorders including malnutrition, osteoporosis and infertility.

Coeliac disease is an autoimmune disease. Some people are born with a genetic predisposition to develop the disease, and environmental factors play an important role. There is no cure, but the disease can be managed by sticking to a strict lifelong gluten-free diet. This allows the microscopic, finger-like projections (villi) of the small intestine to recover and assist in normal absorption of nutrients.

Some foods that may contain gluten include:

  • Cereal and baking products – wheat, wheaten cornflour, semolina, couscous, wheat bran, barley, oats, porridge, breakfast cereals containing wheat, rye, oats or barley, corn or rice cereals containing malt extract from barley, some icing sugar mixtures and some baking powders
  • Pasta and noodles – spaghetti, pasta, lasagne, gnocchi, hokkien noodles, soba noodles and two-minute noodles
  • Bread, cakes and biscuits – all bread, cakes and biscuits prepared with flours from a gluten source
  • Meat products – any products prepared with breadcrumbs or batter, sausages and other processed meats or smallgoods (unless labelled gluten free), thickened soups, meat pies and frozen meals
  • Dairy products – malted milk, ice cream in a cone and some soymilks
  • Fruits and vegetables –textured vegetable protein (found in some vegetarian products) and fruit-pie filling
  • Condiments – malt vinegar, some mustards, relishes, pickles, salad dressings, sauces, gravy and yeast extract from barley
  • Snacks – liquorice, some lollies and chocolates, packet savoury snacks and some flavoured potato and corn chips
  • Drinks – cereal coffee substitutes and some milk drink powders
  • Alcoholic drinks – beer, stout, ale, Guinness and lager (most beers contain gluten, however a range of gluten-free boutique beers is now available in Australia)
  • (source betterhealth.vic.gov.au)

Being diagnosed with having gluten intolerance means that for the rest of my life I have to be ultra-cautious about what I eat, even with foods that claim to be gluten free.

It’s not a ‘fad’ that I’m going through, as some have pointed out. If I eat foods containing some form of gluten it can affect me in a variety of ways.

A mild reaction is similar to having a stomach upset with mild stomach pains and or diarrhoea which can happen within half hour or several hours later. A severe reaction – which has occurred 3 times in the 6 years since I’ve been diagnosed, will be in the form of severe stomach pain that lasts 3-4 days!

The first time I had a severe reaction, I happened to be in Sydney on a holiday with my sister and her family. I thought I was suffering food poisoning after eating an Indian Curry but when it happened again 2 weeks later I realised that I was eating something I shouldn’t. After a process of elimination I realised it was a ‘gluten free bar’.  As soon as I stopped eating this ‘gluten free bar’ I didn’t have any more reactions until….

Until 4 months ago when I suffered another severe reaction. This time it saw me asking my partner Piet to take me to hospital at 0300am as I could no longer cope with the pain, let alone sleep. 36hrs later I was allowed to go home after having numerous tests and scans to see what the issue was. I think at one point the Dr’s were giving me two different forms of pain killers which weren’t really making much difference. The pain lasted another 2 days before it was gone. Once again it was from something I’d been eating or drinking that contained some form of gluten.

I’ve spoken to and met quite a few people from Australia & also England who are also diagnosed with being gluten intolerant or celiac. Each person is different in how they react, one friend I met was able to eat rye bread and have drinks containing vodka whereas I cannot.

More recently has seen a lot of people change to a ‘gluten free’ lifestyle as it is a healthier way of living. These people still have the choice to eat what they want, whereas I don’t. Even with a whole range of new ‘gluten free’ foods being available I still need to be careful and check ingredients before I buy something.  

Often people will say, ‘it must be hard not being able to eat all the foods that everyone else can’. At first it was but I‘ve come to realise it was my body’s way of telling me I was eating too much crap/processed food and something needed to be done. I could either choose to continue eating what I was and suffer from mild forms of pain to severe forms of pain or I could choose to cut out all foods containing gluten/wheat and live a relatively pain free lifestyle 🙂

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