Coeliac Awareness Week: 8 Things Nobody Tells You About Coeliac Disease

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This week is Coeliac Awareness Week. This is something I’m really passionate about- although I’m not coeliac myself, since writing more about gluten-free I’ve become much more aware of the disease and I find it really frustrating that the information about coeliac disease is still shockingly inaccurate. So today I’m hoping to readdress the balance with today’s post: 8 things that nobody tells you about coeliac disease (even if you have it!)

1.That you may not feel better instantly after diagnosis. Many people believe that going gluten-free is an instant cure for coeliac disease but this is often not the case. It can take years for the gut to recover from a period of undiagnosed coeliacs diagnosis; and patients may also need to remove additional foods from their diet. In a past blog post, I talked about why many coeliacs may also find it hard to digest dairy. Much more rarely, patients can experience Refractory Coeliac Disease when the body does not respond to a strict gluten free diet.

2.That you’ll still have to see a doctor. Many patients assume that once they’re diagnosed  they      will no longer need medical attention. Yet Coeliac UK recommends patients still have yearly                 checkups with a doctor to check your blood levels of things like iron and disease antibodies.

3. That you are more at risk of other autoimmune disease One of the reasons that patients require annual check ups is that they’re still at risk of other diseases-for example coeliac disease is more common in those with Type 1 Diabetes, IBD and autoimmune thyroid disease. Some patients can develop these autoimmune diseases post or pre-diagnosis. If you have another autoimmune disease, you are at more risk of coeliacs disease so get tested!

4. That you’ll spend most of your days trying to work out the difference between ‘gluten free’ ‘no gluten containing ingredients’ ‘low gluten’ and ‘gluten friendly!’ Nothing can prepare you for the mindfield that it is free-from shopping!

5. That when you meet another coeliac, you will instantly want to be best friends with them. Because they understand the pain you feel when you walk past a bakery- which is as solid basis of friendship as any other.

6.That ocassionally you’ll get glutened even if you think you did every possible thing right. This can be a cause of real anxiety for sufferers- since it can be stressful trying to figure out what they did wrong (and lead to future anxiety about things like eating out and traveling)

7. That the symptoms go far beyond digestive discomfort. There are unofficially hundreds of symptoms of coeliacs disease; but the most common ones listed by the NHS may surprise you. These include swellings and numbness of the hands and feet and vomiting. This study suggests a link between coeliacs disease and elevated liver enzymes  That’s why it is so important to raise awareness of all the different symptoms coeliacs disease has.

8. That like many of the conditions I blog about, the mental health aspect of diagnosis is largely unexplored. I asked lots of coeliacs about the thing they were never told about coeliac disease and this came up the most. Coeliacs can experience anxiety with eating out, socialising traveling and adapting to life on a strict gluten free diet.

If you are a coeliac, you’ll probably have identified with all of these- but there may be more of you reading this who have not recieved a diagnosis. Did you know the average diagnosis time of coeliac disease is 13 years?  You can now do an online assessment to see if you should be tested for coeliac disease here

 

If you find this helpful, please please share to raise awareness of proper information about coeliac disease! You can also find my other posts on coeliacs disease and being gluten free here including 10 Times You Hate Being Gluten Free

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6 Comments

  1. May 9, 2016 / 10:33 am

    My old manager at work used to have coeliacs and when I first met her about 8 years ago it was relatively uncommon but now it is becoming more recognised. Such a horrible disease for anyone to have so it’s great that you’re raising awareness x

  2. May 9, 2016 / 1:53 pm

    This is really interesting I know a few people with coeliacs but don’t know much about it at least I have a little more insight now. x

  3. May 9, 2016 / 9:49 pm

    I must admit, I don’t know much about coeliac disease and I found this post very useful. I have a colleague with this condition and I feel really sorry for her – it such a horrible disease. I am keen to read more about the mental aspect of the symptoms as you already mentioned there is not much explored about that yet. Thanks for sharing

  4. May 10, 2016 / 9:18 am

    Re #5, when you meet another coeliac, you WILL become friends with them and you’ll share all your restaurant, bakery and grocery tips with each other. I failed the coeliac test (twice) but experience all the symptoms, so I’ve been gluten free for a few years now. I am dealing with vitamin deficiencies – another common issue with coeliacs, who tend to have absorption issues. Thanks for covering this, always good to keep getting the word out!

  5. May 10, 2016 / 6:36 pm

    I was totally unaware of this condition so its great to learn more about it through your post.

  6. May 10, 2016 / 6:59 pm

    Such a fabulous post – really informative. I am super lucky that none of our family seem to struggle with anything like this, but I would rather know more about it! H x

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