The Coeliac Series: The symptoms of coeliac disease and how to get tested

sarah howells the gluten free blogger coeliac disease symptoms diagnosis (2)

It’s Coeliac Awareness Week this week and I’m bringing you a three-part series of posts, The Coeliac Series, with all the information you need about the symptoms of coeliac disease, starting out a gluten free diet, and living a long and happy gluten free life!

To kick things off, I’m trying to help Coeliac UK raise awareness of the signs and symptoms of this common – and yet often undiagnosed – disease. In fact, one of the big things Coeliac UK is keen to push is that the symptoms of coeliac disease can often be misdiagnosed.

For example, did you know that there are half a million people in the UK living with coeliac disease, but many of them could have been diagnosed with IBS. Coeliac UK estimates one in four people with coeliac disease were previously misdiagnosed with IBS. So if you have IBS yourself and you were never tested for coeliac disease, now could be the time to go and pay your GP a visit. 

Now you might expect a condition related to your gut would only result in toilet troubles, but that’s not the case. Coeliac disease can have a whole host of symptoms, and while a lot of these are common symptoms of other problems too, it’s important if you have any of these ongoing troubles that you speak to your GP and suggest being tested for coeliac disease.

People often feel embarrassed talking about bodily functions, but you shouldn’t be. It’s important if you do have coeliac disease that it is diagnosed properly and you adhere to a strict gluten free diet. 

Commonly misdiagnosed symptoms of coeliac disease

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There are many symptoms of coeliac disease that are commonly misdiagnosed as IBS because they’re very similar. But if you have any of these and you haven’t been tested for coeliac disease then you should go back and speak to your doctor about it. It’s really important that you keep on eating gluten before you’re tested for coeliac disease too, which I know doesn’t seem like a fun idea if it’s making you unwell. However, it’s important to get an accurate diagnosis so definitely speak to your GP. Some common symptoms often mistaken for IBS include…

Severe or occasional diarrhoea

Thought we’d just get straight in there with the one no-one wants to talk about! If you’re experiencing toilet troubles, and you’re noticing it’s an ongoing pattern, it’s time to visit the GP. It’s really important to get to grips with your bowel habits and if something isn’t right, speak to your doctor.

Excessive wind and/or constipation

Again, it might be embarrassing to talk about toilet troubles, but it’s important to be able to speak to your GP if something isn’t right. And no, no-one wants to go to their doctor and say ‘I can’t stop farting’ or ‘I can’t take a dump’ but trust me, they’ve seen it all before.

Persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting

I mean, constantly feeling sick or vomiting isn’t fun at all. So don’t suffer with it – if you think you might have issues with this it’s worth speaking to your GP about getting tested for coeliac disease.

Recurrent stomach pain, cramping or bloating

This is another problem which is often misdiagnosed as IBS. It’s important if you’re experiencing any of these symptoms to go and see your doctor.

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Other coeliac disease symptoms

As well as bowel symptoms, there are so many different problems which could actually be a sign of coeliac disease. Some of the other symptoms of coeliac disease include:

  • Any combination of iron, vitamin B12 or folic acid deficiency
  • Anaemia
  • Tiredness or fatigue
  • Sudden or unexpected weight loss, or difficulty putting on weight
  • Mouth ulcers
  • Skin rash
  • Depression or anxiety
  • Recurrent miscarriages
  • Nerve problems such as numb hands, loss of co-ordination
  • ‘Brain fog’

There are a whole range of other symptoms I’ve heard of, from joint pain to migraines – so it’s definitely worth suggestion to your doctor about coeliac disease if you’ve exhausted other avenues. You can also take Coeliac UK’s online symptoms checker to see if you could have coeliac disease.

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How do you get tested for coeliac disease?

If you think you have some of the above symptoms, or you’ve been diagnosed with IBS but were never tested for coeliac disease, what happens next? First off, speak to your GP. If you’re presenting symptoms then you can have a blood test to be tested for coeliac disease.

A blood test is the first stage in diagnosing coeliac disease and will detect antibodies released in response to eating gluten. However, this means currently you must keep eating gluten to have an accurate result. If you’re currently not eating gluten, speak to your GP about this – and if you’re still eating gluten and think it might be the problem, don’t stop until you’ve seen your doctor.

If you have previously been tested and had a negative result, then go back and speak to your GP if you weren’t eating gluten at the time. This might have affected the results and you may need another test.

If you test positive for coeliac disease in a blood test, most people (UK based) will then be invited for an endoscopy. As I was a child at the time of my diagnosis I had mine under general anesthetic, but most adults have them while sedated. This endoscopy should give you the conclusion as to whether you have coeliac disease or not.

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What happens after a coeliac disease diagnosis?

It can feel really daunting when you’re suddenly faced with a new coeliac disease diagnosis and no clue where to start when it comes to a gluten free diet. And that, my friends, will be the subject of my next blog post in this series, out on Wednesday! Make sure you check back and I will update this to link to that post when it is live.

In the meantime, I’d love to know what your symptoms were for coeliac disease? Did you have classic bowel symptoms, or perhaps you had a symptom not even on this list!? Comment below and let me know – and don’t forget to take part in my Coeliac Bingo if you’re on Instagram – you can find it in the highlights on my profile!

Other posts you might find useful

Oh, and while you’re here, don’t forget to check out some of my other posts about living with coeliac disease. Some funny, some serious – take your pick!

 

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2 Comments

  1. June 6, 2019 / 13:55

    Excellent post. I didn’t find out I had it until about 13-14 years ago. I had to beg the dr to test me for it, I was so sick, chronic fatigue, constipation, diarrhea, severely anemic, other vitamin deficiencies, developed lichens and more stuff. Drs don’t listen to their patients. I knew I had it at least 15 years before being diagnosed. They kept saying I had IBS, which I knew wasn’t true but the drs said Coeliacs was so rare I just didn’t have it 🙄🙄 When he finally did the test and came back positive, he had his head hung down shaking his head saying “You had all the symptoms I just didn’t think you had it because it’s so rare.” Jerk🙄🙄🙄

  2. Emma Weeks
    August 13, 2019 / 09:02

    I had my blood test yesterday to check if I have the disease. I’ve suffered since a teenager with what I believed was IBS, as this is what my G.P diagnosed me with! I’d noticed that my symptoms were getting worse, so the G.P sent me for a scan. 6months later I had my gallbladder removed as apparently that was causing my problems! Now I’m back to square one again! I saw a different G.P 8 weeks ago who at last agreed to test me! So now I’m waiting for the results, which I’m hoping will come back with something! I’m bloated almost everyday after eating, I have at times extreme wind 🙈, sickness, cramps and tiredness! So fingers cross for a answer! Your blog really helps me when I’m feeling rubbish about it! 😊

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