One year on

Today is, what I have affectionately named, my gluten-free-versary. This is my 367th day of being gluten free. Last year was a leap year before anyone thinks I’ve gone mad! ? So I have survived my first gluten free Shrove Tuesday, Easter, birthday, work night out, summer holiday, work residential, and Christmas. I’ve told my friends about what I can and can’t eat, my family have all stopped double-dipping into butter and jam and I’ve got a decent list of local restaurants where I can get good food.

This time last year it looked bleak. I’d gone from (I thought) absolutely fine, to dealing with an incurable autoimmune disease in the space of 6 weeks. It was a shock. It felt like life as I knew it had just been wrenched away from me. I love food. Especially cake. Cake was now the enemy. No longer was cake “just” making me fat and rotting my teeth, now it was destroying my intestines, making me anaemic and giving me osteoporosis – as well as making me fat and rotting my teeth.  It sucked. Life wasn’t fair. I might as well give up on enjoying food altogether.

I have been very fortunate to have family and friends who have been (with just 2 exceptions who really stand out for their ignorance) absolutely fantastic. Everyone at home eats gluten free evening meals so I can have the same as everyone else. My parents have gone out of their way to find gluten free biscuits and cakes so that I can still have an unhealthy-but-oh-so-satisfying snack like I used to. My mum has become a gluten free baking ninja, hell bent on converting everything we used to bake into a gluten free version I can eat. With success!! My friends have all been happy to try new restaurants where I know I can eat well and we’ve found some great new haunts as a result. Work colleagues have also gone out of their way to bring gluten free cakes and biscuits in for celebrations (or because it’s Wednesday….or June …. or the day ends in a ‘y’) so I haven’t missed out on anything. As I gradually got used to the idea of being coeliac, I was also very, very conscious that it could have been a lot worse. I could have had a disease which would kill me, or was only controllable by a lifetime of drugs. My Coeliac disease, if left undiagnosed, would have made me far more ill than it already had. By catching my coeliac disease when she did, my GP saved me from lifetime of anaemia, brain fog and damaged intestines as well as catching (and hopefully reversing) osteoporosis. She also saved my brother from all of this – turns out he has it too. It could have been so much worse.

So, what have I learnt this year?

1) Knowledge is power. The more I read, the more I understood my disease, giving me an idea of how my life was being affected by Coeliac. Symptoms I didn’t realise weren’t normal began to ease and disappear. Research showed me what to look for and so I saw fast, long term improvements in my health and well-being. That’s so important when you’ve just given up the diet you’ve enjoyed for 30 years. Research also keeps me safe – I know what to ask in restaurants etc.

2) Life goes on and it’s good. My diet no longer feels restricted. I have found bread, cakes, biscuits, pizzas, crisps and sweets that I enjoy and don’t destroy my intestines. I enjoy my food more because I don’t  swell up like a balloon after every other meal. I have found restaurants nearby which cater very well for people on a gluten free diet. I have *almost* stopped feeling awkward and fussy when I ask for a gluten free menu and then quiz the waiter too. In the good restaurants, they don’t mind.

3) The coeliac community is amazing. On my local Coeliac UK Facebook group, somebody knows the answer to whatever question you have. Can I eat this? Who stocks this? Where can I go for a good pizza? Is this restaurant good? Somebody knows and everybody understands. No question is stupid or trivial – everyone has been through it. We’re all in the same boat. They’ve been great!

4) Support is everything. With the 2 exceptions I mentioned earlier, everyone I know has been fantastic. They were interested in my condition and asked about it. That meant I could explain without feeling awkward. They haven’t mocked me. Nobody has laughed at the restrictions put on me, nobody has belittled me. They have shared things with me – recipes they’ve seen, GF restaurants they’ve spotted, food they know I can eat! I have had help rebuilding my diet to make it as normal as possible and help baking food I can eat. They have been very accommodating when it comes to picking restaurants and holiday destinations. I hope they know how much I appreciate it.

My advice for a newly diagnosed coeliac:

  1. Wallow and feel sorry for yourself for a few days, allow yourself to sulk. Then get up and get going again.
  2. There are loads of things you CAN eat. Go and find them instead of mourning the loss of your previous meals and snacks. Buy one of every GF cake you see and eat them one after the other. Call it market research. Enjoy.
  3. Find a support group of some kind. Coeliac UK is probably the best place to start. People are willing and able to help. Make use of them.
  4. Explain your condition and diet to friends and family. Most are interested and keen to help. Those who aren’t are not worth knowing.
  5. Blog!

My advice for anyone who knows a coeliac:

1) Ask them about it.

2) Let them choose the restaurant – they’re not being deliberately fussy and they need to feel safe eating the food. A mistake will not just give them a tummy ache. Ask them what they’re trying to avoid happening. The answer might surprise you.

3) Don’t tut and roll your eyes when they get a clean knife, or start at the other end of the butter. The crumbs will make them ill. They’re leaving you to your double-dipping out of politeness, have the courtesy to leave them to their clean knife and strange angles of attack on foods.

4) Don’t make flippant comments, laugh or insist they’re being over fussy. You wouldn’t do it to a diabetic, don’t do it to a coeliac. You wouldn’t try and persuade someone with a nut allergy to have a bag of peanuts, so don’t try to goad them into eating something with gluten in it. Be considerate. Put yourself in their shoes.

So, 2016 was hard work but I feel healthier for it. I know I’m already free of a lot of symptoms and the rest should improve with time. Here’s hoping for a happy and healthy 2017!

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