I was glad to read the letter from Elizabeth Lee in the Cambrian News on May 20. She wrote to help create awareness of coeliac disease and she quoted some interesting facts. I’m a sufferer too and have never received an ‘official’ diagnosis although my consultant accepted that my symptoms matched the disease.

Coeliac disease runs in my family, no pun intended, but this is a disease that seriously causes a pain in the proverbial when a sufferer is contaminated. I end up seeing the walls of my bathroom for two days and have dreadful headaches. A young friend of mine, diagnosed at age 11, is ill for nearly a week.

It was galling to read in Elizabeth’s letter that only 36 percent of sufferers are diagnosed but not surprising. Over several decades visiting GPs and consultants, I too was frequently fobbed off with the ‘it must be irritable bowel syndrome’ response. So I hope that people heed Elizabeth’s advice and have this blood test she mentions.

I’ve learned to live with coeliac disease, bake all my own bread, pastries and cakes. My family and visitors get served gluten free food. It’s easy once you get the hang of it but it took me years to perfect my bread. I wrote my recipes in a small cookbook and have emailed it to newly diagnosed people as in the beginning it’s a real struggle. If anyone wishes a copy, simply email me.

Baking your own is also a lot cheaper. For those who can’t or don’t have the time, a gluten free diet’s expensive. There’s financial help available for those officially diagnosed in Wales, so ask your GP.

The danger of contamination lurks in the background all the time though. It affects your mental health. At home it’s easy to keep your kitchen free from all contaminants. There’s little understanding by other people just how difficult it is to live such a strict lifestyle and here I wish to include all sufferers of allergies. Coeliac disease is an auto-immune disease but what about all those people with allergies to nuts, etc, who suffer an anaphylactic shock? Your life becomes one big obsession with checking ingredients on food packets. Many manufacturers label clearly but not all. So for instance there’s gluten in malt vinegar, whereas cider or wine vinegar is fine, soya sauce too contains gluten but tamari is ok.

I hardly ate out for 20 years. Not only does the fear of contamination causes you to check labels, you become highly suspicious of all actions in restaurants and hotels. Some years ago it became quite fashionable for people to go on a gluten free diet, seen as having health benefits, and I celebrated the enormous growth in products available, including offers on the menus in restaurants. At the same time veganism took off as well. How wonderful to have all this choice, even though lots of it is highly processed crap.

There has been a negative effect of this too. Now, when in many restaurants I actually get asked if I have coeliac disease or simply an intolerance to gluten. If I say coeliac, I may get warned that they cannot promise me that my meal will in fact be free from gluten. There are several restaurants in west Wales that won’t be visited by me any longer. Their attitude put me off. In one, the chef waved wildly with his arms round the kitchen to show me how busy he was and simply had no time for a customer like me. I felt like a pariah. In another one I sarcastically asked them if they accidentally contaminate vegan food with meat. They didn’t get it. They’ve too lost me as a customer. My daughter, coeliac as well, and I went on holiday last year and we were asked to pay an extra Є40 each for them to cater for our diets, only to be served nothing while all other guests were tucking into massive chunks of cake. I complained and got our money back. I would rather they had used the Є40 to buy us some cake too.

Contrast this to the local restaurants where one chef went out of his way to make me special croutons, or the one where the chef personally takes your order and prepares your food separately. Or another one where my daughter got told she’s not a nuisance but a welcome challenge. In Carmarthen I spotted a gluten free bakery, what a treat!

I hope caterers take something away from my writing. You can prepare food for vegans, great, but that’s a diet of choice, those of us with coeliac disease or nasty allergies have zero choice. There are restaurants who manage our diets. Please try harder. And catering courses should teach about allergies much sooner and in much detail.