Coeliac Awareness Week 2007: Symptoms

How do you know if you might have coeliac disease (or celiac disease, as our cousins across the water say)?

Symptoms vary from person to person, and some people are asymptomatic, and are diagnosed by chance, when being investigated for another problem. But there is a cluster of symptoms common enough that they could be called classic symptoms of coeliac disease:

  • In young children –
    • vomiting
    • diarrhoea
    • swollen stomach
    • wasted muscles in the arms and legs
    • failure to thrive (or grow)
  • In older children and adults –
    • exhaustion
    • anaemia
    • depression
    • weight loss
    • mouth ulcers
    • an intensely itchy rash on elbows and knees (dermatitis herpetiformis)
    • constipation or diarrhoea
  • Other symptoms can occur because of the general malnourishment of a coeliac eating gluten –
    • calcium deficiency – which can result in osteoporosis
    • miscarriage or infertility
    • lack of vitamin E, which can be related to nerve damage. Some celiacs report pins and needles
    • lack of vitamin K, which is needed to help blood clotting – lack of this can lead to nose bleeds and easy bruising
    • poor tooth enamel, because it doesn’t form properly, resulting in tooth decay
    • weight loss or weight gain – either because of the diarrhoea, or because the body is craving nutrients and so results in over-eating
    • ‘brain fog’ – inability to concentrate, feeling divorced from reality.

It’s important to note that you don’t need to have all of these symptoms! You might not have any …

If you are suffering from any of these symptoms, and think you might have coeliac disease, please go and see your doctor. It is important not to rely on self-diagnosis because you might have something else wrong with you that you haven’t thought of.

I know it is counter-intuitive, but please don’t stop eating gluten until you have a diagnosis, as removing gluten from your diet will start to repair the damage done – if you are a coeliac – and you won’t get a clear diagnosis.

Coeliac Awareness Week 2007: Getting to Diagnosis

Yes, it’s Coeliac Awareness Week here in the UK again, and local groups are organising events to promote awareness of this disease. The focus this year is on getting diagnosed.

1in100.jpgHere in the UK, it’s estimated that as many as 1 in 100 people have the disease, and many – indeed, most – of these are undiagnosed.

According to Coeliac UK, it can take as long as 10 years from someone first presenting themselves at their doctor’s surgery with symptoms for them to get a diagnosis.

Luckily, it didn’t take us that long to get my daughter diagnosed – after all, that’s almost her entire lifetime! We first became aware that something wasn’t right at Christmas 1996, when she was just 1, and I took her to the doctor several times in the early part of 1997. Her symptoms worsened:

  • she lacked energy – she and I would sit on the floor at Tumbletots, me with my big pregnant belly, and her with her big swollen malnourished belly, and weep while the other toddlers played around us
  • she vomited at every meal – not a classic symptom, and one that the medics thought was irrelevant. But its not normal, is it?
  • she ate less and less, until she was eating only milk, grapes and chorizo (odd, I know – but naturally gluten free!)
  • her belly swelled until her belly-button everted (became an outie, not an innie)
  • her arms, legs and buttocks grew skinny

    At one point she was wearing the same size nappy [diaper] as her 3 month old sister – at 21 months old – because the age-appropriate ones were too big for her bottom.

  • and her nappies were vile.

    Oh, were they vile. If you’ve got CD, you’ll probably recognise this – pale, frothy, so copious that they would overflow her tiny nappy and fill her shoes, and the stench could be detected from a different floor in the house, not just across the room.

After a while she was tested for giardia, and then for cystic fibrosis, and finally she had a blood test for coeliac disease followed by a biopsy. In autumn of 1997 we had a firm diagnosis and were allowed to change her diet.

And within a couple of weeks, we saw an extraordinary improvement in her health and energy levels – and she asked for food.

This tiny girl who had refused food, and vomited it up regularly, and who was unable to get the nourishment she needed from our everyday meals – now wanted to eat.

It makes me want to cry even now, 10 years on, just thinking about that day.

It took us 9 months – not 10 years – to get a diagnosis, and that’s because our doctor knew about coeliac disease, and was prepared to consider it as a diagnosis. 9 months was just how long it took to get through the programme of tests and appointments.

We need more awareness of the disease, to ensure that people don’t have to live with the symptoms for even as long as 9 months, never mind 10 years!

Who do you know who might be 1 in 100?

26 miles for coeliac disease

Good luck to all those running the London Marathon on Sunday to raise money for Coeliac UK:

Ali Gregory
Fiona Hampton
Adrian Parry
Jason Pitcher
Peter Merrick
Michael Dawson
Adrian Ford and
Ian Hodge.

Trevor Cummings, who had also planned to run, has had to withdraw from the London Marathon due to a broken metatarsal, but will be running the Abingdon marathon in October, and London next year.

Look out for the CUK vests …

Big decisions for Coeliac UK

Sarah Sleet, CEO of Coeliac UK, came to speak in our area recently, and although much of what she said was motherhood and apple pie stuff, there were a few really significant points.

The first was that there are 900 new members of Coeliac UK per month. Per month!

The second was that it costs around £25 per member to keep this charity going – and that Coeliac UK is largely reliant on donations from its members. At the moment it is free to join.

The third is that most people do not make donations. I forget the exact numbers (should have written them down) but somewhere in the order of 60% make no donation at all, and that only about 8% donate over £20/year.

It doesn’t take an economic genius to see that there is an ever increasing shortfall between income and outgoings. Yes, I know that some of CUK’s income comes from advertising in the magazine, or from sponsorship from the big manufacturers, but for the most part the income comes from us, the members.

The decision to be made is: should the charity move to a subscription basis, or stay on a donations basis?

This isn’t an easy decision for the trustees to make, and the implementation of the subscription would be tricky (what about families with more than one coeliac?). It will go to the membership for a vote before any final decisions are made, but it is something to think about over the next few months.

In the meantime, I shall commit to increasing our own donation to Coeliac UK. I – for one – hadn’t realised the cost per member of running the charity, and therefore wasn’t donating enough. No doubt this is true for many other members, and so perhaps CUK should think about making this clearer to the membership.

Not just a fad

The Sunday Times has an article today explaining that coeliac disease is not just a fad diet, but a serious disease requiring proper diagnosis and treatment by gluten-free diet.

Coeliac disease is an autoimmune problem, which means that the body produces antibodies to itself when gluten is eaten, eroding the villi in thesmal intestine. It isn’t just a matter of a little bloating, or of avoiding carbohydrates. Coeliac disease can trigger bloating, yes, but also vomiting, diarrhoea, mouth ulcers, skin problems, joint pain, miscarriages, depression, osteoporosis and cancers.

The variety of symptoms means it can be difficult to spot, though diagnosis is fairly straightforward, once the connection is made. Diagnosis is usually made by blood test followed by biopsy – and you should keep eating gluten until a diagnosis is made – or, of course eliminated. Going gluten-free may give inaccurate results of any tests.

It is great to see an article clearly explaining the difference between a fashionable diet and a diet required for medical reasons. All too often, people think that going gluten-free is something optional. Congratulations to Amanda Ursell for giving us such good publicity with such an accurate and helpful article.