You’ve been diagnosed with coeliac disease. Now what?

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If there is one thing I’ve learnt about my journey with a digestive disease, it’s that diagnosis is the loneliest of times.  It’s a time when we feel so many different emotions struggle to find support and just can’t adapt to our new way of life. Most days I have messages from people- whether they have coeliac disease or Crohn’s- saying they’ve just been diagnosed and they don’t know what to do.

In my opinion, there’s just not enough support post-diagnosis! People who are diagnosed coeliac disease are often given the impression they’ll feel better instantly and receive very little medical support. It’s no wonder, people can end up ‘cheating’ on the diet at first: partly due to it still being a bit of a minefield and partly because the consequences of doing so are not often explained.

I’m pleased to announce that for the next few months, I’ll be teaming up with Genius as one of their blog ambassadors! While there’s plenty of recipes on the way, when they asked me to write about gluten-free life-I knew that the first post I wanted to do was a guide for newly diagnosed coeliacs.

 Whilst I love to blog about gluten-free foods, to me, it’s equally as important to provide practical advice and support too. So if you’re newly diagnosed or perhaps know somebody who is, hopefully, this blog post will be really useful! If you are struggling to talk to a friend or family member, send them the link to spark a conversation!

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Me and my fellow genius ambassadors. What a great bunch of ladies to be a part of.

What is Coeliac Disease? How did I get it and can I be cured?

It might seem an obvious question, but some still believe that coeliac disease is an allergy or intolerance. It’s not: it’s actually an autoimmune disease in which the immune system ‘attacks’ when gluten particles are present. We don’t know the cause of lots of autoimmune diseases- coeliac disease does run in families and your more likely to have it if you have another autoimmune disease, like IBD. Unfortunately, there’s no cure other than sticking to a 100% gluten-free diet.

How often should I see a doctor?

You should still see a doctor regularly (around once a year); especially to do a blood antibody test. If you are completely gluten-free, you should essentially test negative for coeliac disease then (as there’s no gluten in your system so your body is no longer attacking itself!) Remember to keep on top of doctor’s appointments as you are slightly more likely to develop other autoimmunconditionsns.

I’ve got no idea about what to eat!

It can feel really overwhelming at first.Luckily, there are more alternatives than ever before! Free from aisles are incredibly useful in the transition period and to make us feel ‘normal’.

At the event, we talked about what goes into a loaf of Genius bread, and this was really useful to know.  Looking at the ingredients is crucial: not just to check if it’s gluten free but to also see how much sugar and salt you’re taking in. There’s plenty of recipes on this blog but I’d also recommend joining Facebook groups such as ‘Gluten Free and Me’

 

I have no idea what to say to friends and family?

It can be really difficult to talk to family members and friends. Especially when they can’t get their head around what you can actually eat!  Show them the coeliac UK directory and most importantly stay firm when challenged about food (even if you feel like a complete pain, it’s important to remember you have a disease.) If going out to a restaurant, always call up in advance and ask to speak to the manager or check the menu online. Always bring back up food to avoid being left with nothing to eat.

I’ve given up gluten but I still don’t feel better?

This is actually really common. Temporarily, it can be worth considering if another food group might cause issues. For example, coeliacs may temporarily lack lactase to digest lactose properly while healing. Also be patient- many people are undiagnosed for years and healing cannot happen overnight.A small proportion of the population, unfortunately, has the refractory coeliac disease, which doesn’t respond to a gluten-free diet.

I keep getting really anxious about my diagnosis….

Anxiety is one of the many symptoms of coeliac disease so it’s no suprise people feel anxious. Interestingly, people with coeliac disease might be deficient in certain minerals which are linked to anxiety- such as Vitamin B or Magnesium. There is also definitely a connection between our gut and our brains which means anxiety is more likely when your digestion is poor. Time is a healer: a stronger gut will help you absorb more nutrients which might have an impact on your food. If not, remember being diagnosed with any life-changing disease does have huge psychological impacts, so don’t be afraid to ask for support.

Should I take any supplements?

It’s worth checking your B12 and iron levels. Enriched products such as Genius’ bread are great too.

There’s no supplement that can help with coeliac disease but one thing we learnt at the event is that sometimes it’s more common to be deficient in certain vitamins and minerals if you have coeliac disease. This is something the brand’s owner felt strongly about, so they actually added vitamin B, Iron and Calcium into their loaves of bread to help!

What happens if I eat gluten by mistake?

 Although it can feel like it’s self-inflicted, don’t beat yourself up- it happens to the best of us. Focus on doing anything you can to support the gut- bone broth is great in this case the collagen can help with gut lining repair. The remarkable thing about the digestive system is its ability to heal quickly, so you will bounce back!

For more tips and advice on being gluten-free, check out the Coeliac disease category of my blog!

This is a collaborative post with Genius, who I am working with over the next few months as a Genius ambassador

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