Member login 
Coeliac New Zealand Logo
blank

Living with coeliac disease CAW2020

blank

We all know coeliac disease has many ‘faces’ - it can affect anyone from any walk of life and has a wide range of symptoms that aren’t always easy to see or explain. Throughout Coeliac Awareness Week we’ll be sharing stories  about our people who are living well with coeliac disease and inspiring others to do the same (thanks to the generous support of Bennetto Natural Foods Co).

We’ll also encourage those who might have the condition or is at risk to follow their gut feeling and take the online self-assessment and get diagnosed so they can live well too.

Dave Meyers is the first to tell his story.

You may or may not be aware that many Type 1 Diabetics also suffer from other auto-immune related conditions. Some that come to mind are poly-myalgia, rheumatoid arthritis, psoriasis and lupus. My particular affliction in addition to my Type 1 is Coeliac Disease.

Coeliac Disease is an auto-immune related intestinal reaction to dietary gluten. The day to day symptoms can include gut discomfort, bloating, wind, bouts of diarrhoea and/or constipation, etc. However, long term untreated Coeliac Disease can result in bowel cancers.

I was eventually diagnosed with Coeliac Disease back in 2003 after many years of unexplained gut discomfort. This finally resulted in my developing a skin rash called dermatitis herpetiformis which helped the medicos look to Coeliac as the cause. After confirmation by biopsy I was told that I needed to adopt a gluten-free diet which will be necessary for the rest of my life.

Back in 2003 Gluten-free has not become a “thing” like it is today, so it was very difficult to obtain products like GF bread, pasta, etc. GF bread and pasta were in fact available on prescription, and thus one of the first things we purchased after my diagnosis was a bread-maker. A fun thing for a carbohydrate counting diabetic is sitting down with a calculator to work out the carb content of a slice of homemade bread (or biscuits, cakes, etc).

My diet (and my wife’s) became a little restricted from then for a while you might say, but gradually we experimented with new recipes. Nowadays we are able to concoct a huge range of tasty gluten free foods. Trips to the supermarket became much more involved as we now had to read the labels on every product to look for potential sources of gluten. Quite a bit of interpretation is required, and a knowledge of what all the additive numbers mean.  Recent improvements to food labelling have been great as allergens now have to be listed, but you need to take your reading glasses for the ever-smaller script.

Eating out was a real problem with the safe option usually being steak and salad with no sauce or dressings, although cross contamination in the kitchen was (and still is) a big risk. For a while invites to friends and family for dinner were a big problem. It was necessary to explain what I could and could not eat, and ask whether it would be easier if I took something along for myself. I am forever grateful for the care and understanding friends and family have demonstrated over the years to ensure anything they served was safe for me.

The arrival of Gluten-free as a health trend has been fantastic for Coeliacs. Suddenly there was a whole section of products I could go straight to, but there was one issue. For a type 1 Diabetic with Coeliac, one of the big problems is that many of the GF recipes and products contain an awful lot of sugar and fat. Not good things for a Diabetic! So, many of the wonderful new products just do not fit with a healthy lifestyle for me.

Joining the Coeliac New Zealand was great. It gave me access to lots of Coeliac related information - particularly fellow Coeliac’s experiences travelling overseas, which gave me the confidence to travel more. Now with the society’s Dining Out programme there is a list of restaurants that have adopted practices to ensure Coeliacs do get truly gluten free food.

Some things we have found that are “traps” for Coeliacs include:

  • Chips and other fried foods can be contaminated if battered items are cooked in the same fryer
  • soy sauce (it’s made from wheat not soy) is used in lots of recipes you wouldn’t suspect
  • you can’t eat GF toast that’s cooked in a toaster used for non-GF toast
  • GF pizza bases are not much help if they are prepared/cooked in the same areas of the kitchen as other pizzas
  • While restaurants try to make sure their food is gluten free, gaps in their knowledge and cross contamination often create “time bombs” for Coeliacs.

Perhaps one day soon we will have a cure for both Diabetes and all the other auto-immune conditions. Until then …………….

blank
linkedin facebook pinterest youtube rss twitter instagram facebook-blank rss-blank linkedin-blank pinterest youtube twitter instagram