My Coeliac Journey: Diagnosis And Beyond…

Lizzy's-Blog-August-2015

Thirteen years on from being diagnosed with the coeliac condition has got me thinking about how time flies(!) and how things were for me when I started my gluten free adventure compared to the present day.

So this month, I’d like to share a little flash back in time to tell you about my own personal diagnosis journey, along with general information about how I got to grips with the gluten free diet in the very beginning, and to finish off, the best advice I’d give to anybody who suspects coeliac or feels that gluten/wheat is causing them a problem.

Getting an accurate medical diagnosis

It is really important to keep gluten in your diet prior to being diagnosed for coeliac disease. I speak to so many people who have taken gluten out of their diet to see how they get on before being tested – sometimes it’s their own idea and other times they have been advised to by somebody else. Unfortunately if gluten is removed before testing the results can be inaccurate, which may indicate that you’re not coeliac when in fact you still could be. As the only treatment for the coeliac condition is a gluten free diet without any deviation, it is vital that a correct diagnosis is confirmed.

I think once you’ve had a medical diagnosis, it makes you more mindful of sticking to your diet, meaning you approach it in a different and more positive way than you would do if it was a lifestyle choice.

Once you’ve been diagnosed you can register with Juvela for a free starter pack, packed full of gluten free food samples, information, recipes and all the tools to help you on your way!

What personally started me down the diagnosis path was the fact that my mouth was cracking at the side and was uncomfortable. I was prescribed cream which didn’t change things, but from this, it was picked up that my iron level was a little low. Luckily for me, I was unaware  at the time that my GP was testing me for coeliac, so I maintained a normal diet throughout.

The first time I ever heard of the coeliac condition was when my GP called to say that my blood test was positive and that I most likely had it. He advised me at that stage to remain on a normal diet until I had my endoscopy. I did as I was told with relish (and of course to get an accurate diagnosis) and I was fortunate that it was actually confirmed there and then on the day I had my endoscopy.

This diagnosis process can be different for everybody, because the symptoms can vary so much, as can advice sometimes – so once again I must stress that above all else it is very important to seek accurate medical guidance, and stay on a normal diet if possible until advised otherwise.

After being diagnosed…

Initially, I took my diagnosis along with my new diet pretty much in my stride, but then I do remember suddenly feeling at a bit of a loss. Although I was put forward to see a dietitian, the wait was about 6 weeks – which is a long time in the world of food for me! Luckily, a family friend stepped in with a huge helping hand. She told me about Coeliac UK, brought me samples of speciality gluten free products and gave me names of gluten free companies that I could contact for samples. This I felt was a turning point and everything started clicking into place. I contacted Coeliac UK, who then also connected me to my local coeliac group. I rang gluten free companies that offered great food samples to try before deciding what things I wanted to add on to my prescription.

Without this additional support I do feel I would have been stumbling around a little – so make sure you get all the help you can from those around you.

The best advice I can give for newly diagnosed:

1. Ensure you have an appointment lined up with a dietitian, and that you make notes of things you would like to ask them so that you don’t forget.
2. Join Coeliac UK. They will send out the Food and Drink Directory and quarterly magazines. They normally pass on your details to your local coeliac group too, which can be really useful. I remember going to my first meeting at my group and it was like a breath of fresh air to be able to chat to other people that were diagnosed; their positivity and enthusiasm for all things gluten free was fantastic!
3. Contact gluten free companies, as they offer fabulous support to people that have been newly diagnosed – from generous samples to help you decide what you may like to add on to your gluten free prescription, to recipes and general information that will help you with your new diet.
4. Make a note of the product details when you try foods that you like – this saves any confusion when you come to order things on prescription.
5. Visit your GP to set up your prescription once you’re happy with the samples you’ve tried out and have decided which are best for you. Your prescription will provide you with a monthly supply of safe staple gluten-free foods.
6. Check your cupboards and restock your essentials with things that are naturally gluten free, so when preparing meals for the whole family, you can use ingredients that will be safe for everyone.
7. Find local places that offer gluten free on their menus. I do have a reputation to chatter and this has helped me find out about so many hidden gems that offer gluten free dining. Only yesterday I got a great tip off from perfect stranger who recommended Tea 4 2 in Manchester. Can’t wait to give this one a whirl! Do your research online to find perfect venues close-by that can cater for your needs whatever the occasion.
8. Go to all the food fairs, roadshows and cookery demos you can. Take friends and family along with you to experience what being diagnosed with the coeliac condition entails – their support for your diet is so valuable.
9. When you have a family/friends get together, prepare dishes that are naturally gluten free. This will help them when you’re over at their homes, as it gives them ideas of things they’re able to make for you that are gluten free and can be enjoyed by all with just a little bit of care!

Well, there you go! Luckily for me, each step has been a positive one and many foods that I missed or thought I could never include within my diet are now back on the menu. I’d love to hear your stories in the comments below too, especially if you have any positive tips for anybody else going through the diagnosis journey.

Happy, healthy gluten free eating,
Liz x

*The information we’ve provided here is accurate to the best of our knowledge at the time of publishing. As always, please ensure you thoroughly check any food is definitely gluten free by checking the ingredients before you decide to try or buy.

4 Responses to “My Coeliac Journey: Diagnosis And Beyond…”

  1. Jules

    If you can see a change in the products after 13 years, just think of the difference I can see after 68 years! I was one of the first diagnosed babies in 1947 at 15 months old, and yes, it was during the snow which made it a memorable one as the really bad ‘winter of 47’. I was in hospital for 18 months and was kept in a special ward in St Michael’s Hospital for Sick Children. I was also photographed (in the nude!) every time I went for an appointment and had blood tests, all sorts of prods and pokes, and a selection of tablets and medication to take away with me. Although I was diagnosed as a Coeliac, at that time, nobody had ever heard of gluten intolerance so I was fed on breast milk, from a bank – similar to a blood bank – and mashed bananas. Each time a boat with fresh bananas came into Cardiff Docks there was a radio announcement for hospitals to get some collected especially for us ‘Banana Babies’. When I eventually gained a bit of weight and was more stable I was then sent to the Jan Smuts Convalescent Home in Burnham on Sea for a further 6 months. This meant I had been away from home for 2 years and had not seen my father for all that time. He was a complete stranger to me and I wouldn’t have anything to do with him, which broke his heart. Gradually I came to accept him so he was much happier. If you could se the food/diet sheet I came home with from Burnham, you would laugh because they said to give me Weetabix for breakfast and toast and Marmite if I was hungry and needed a snack in the day. I was limited in the fats and starches I could have and took my own food to a party. Once got very upset (screaming I gather) because I wasn’t allowed ice-cream, but my Mum made me something like a custard which usually satisfied me, but not that day.
    We were fortunate that my grandparents had a farm and my Grandma would make me calf’s foot jelly, and I got lots of eggs and fresh milk which probably accounted for the weight I was able to maintain and keep healthy.
    So, as I said, a huge difference to going to the supermarket and picking what we want from the selection available today. There is a lot more but I just wanted to show the difference to some folks who think they are hard done-by today.

    Reply
    • Juvela Admin

      Hello Jules, it was a true delight to read your account of living with the Coeliac condition for the past 68 years, I’m sure many other people will feel the same!! Thanks so much for sharing your experiences, its very kind of you and does make you appreciate how far things have come regarding the knowledge and the management of a gluten free diet due to the Coeliac condition. Best Wishes, Lizzy.

      Reply
  2. Tamara Hamilton

    Hello Liz I was wandering if you could give me advice?
    I’ve only been diagnosed for a month now and I’m only 19. I am currently staying in my family home with my 3 other siblings and parents, although they are trying their best to be supportive when it comes to my diet, because of the family income I’ve always been raised on a diet of bread pasta,s etc. I don’t want to sound like a moaney little teenager, but it’s been 2 weeks since I was able to sit down and have a meal with my family, you talk allot about recipes in your post, and I was hoping you may be able to recommend something to me that is suitable for a family on a tight budget, it would be nice to eat the same meal as my family for once!
    Thank you and kindest regards

    Reply
    • Juvela Admin

      Hi Tamara, there are lots of things you could have with your family which are either naturally gluten-free or you could have a gluten-free version of. Meals such as cottage pie, hot pot, roast dinner (just make sure gravy and stuffing is gluten free), chilli with rice are all naturally gluten free and can be made on a small budget! Casseroles are also a great family dish and can be frozen for when you need them. If your family was having a pasta dish you could cook your pasta separately and then have the same sauce as them (most tomato based sauces or a carbonara for example should be fine – if buying a shop brought sauce always check the label or use Coeliac UKs Food & Drink directory for suitable brands). Have you set up your prescription? Once you have your staples like bread, pasta and cereal on there you should be able to settle into your gluten free diet more easily. I wrote a blog on some easy meals and good ones for the freezer; https://www.juvela.co.uk/gluten-free-freezer-meals/. If I can offer any more advice or support please let me know.
      Many thanks!

      Reply

Leave a Reply

  • (will not be published)