What to do when you are diagnosed with coeliac disease.

Firstly Don’t panic, although it may feel like it (it did for me) but it’s really not that bad and you should start to feel well again soon rather than getting sicker. 

I was very lucky when I got my formal diagnosis of coeliac disease, my doctor (Jason Jennings), who I saw at the Nuffield hospital in Leeds, was fantastic. He took his time and made sure I fully understood all the ins and outs of my new found life companion (coeliac disease).  However I’ve heard nightmare stories from fellow coeliac sufferers, who were told ‘you have coeliac disease, avoid gluten and you’ll get better’ before hushing them out the door. 

Basic Gluten Foods to Avoid 

  1. Barley 
  2. Rye
  3. Oats
  4. Wheat
  5. Spelt

Brows for short and it’s easier to remember. 

Practical Things

  1. Like our Facebook page Coeliac Advice, we are here to answer all your questions and they can even be submitted anonymously. 
  2. Clean out your food cupboards. If you live alone you can bin all your food containing gluten. If you don’t live alone then organise your kitchen by either creating a space (shelf or cupboard) where your gluten free food go or where other peoples gluten food can go. If you are unsure if you can eat any product you find lurking at the back of your cupboard, then please feel free to ask ‘can I eat this?’ on our Facebook page. 
  3. Buy a new toaster or/and toaster bags. If you are keeping your old one then use the toaster bags for the gluten free toast. If you are buying a new one and live with gluten eaters then use the toaster bags for their gluten toast. 
  4. Clean your oven, hob and work surfaces. Pull everything off them to clean behind stuff. I almost died from shock with the amount of crumbs hiding under my microwave which lives next to the toaster. 

Useful Medical Stuff

  1. Coeliac disease is genetic. Your immediate family need to get tested. After my diagnosis, my sister then my son was diagnosed too. We strongly believed my mum had it too but at this stage her MND was so advanced that she was being tube feed and all her liquid feeds were gluten free. Therefore she didn’t meet the criteria for testing.  
  2. Make sure you have a flu jab (in flu season) most NHS areas provide this for free to people with an autoimmune disease. Trust me you don’t want to have flu on top of being accidentally glutened.
  3. Arrange to see a dietitian, this can be done via your GP. 
  4. Enquire with your GP about having a bone scan, if you have been ill for a while prior to going gluten free your bones may be weaker than normal. 
  5. Ask your GP if gluten free food is available in your area.

Further Information 

Coeliac UK is the only charity in the U.K. which supports people with coeliac disease. It produces monthly magazines and a yearly product guide for its members, as well as fighting our corner over things like prescription and annual check ups. I can’t recommend them enough. 

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