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What’s that gluten thing you’ve got?

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Newly diagnosed?

You may have been so bemused by the announcement – or so deep in the ‘brain-fog’ that can come with a diet full of gluten – that you didn’t quite catch the words the doctor used. Or perhaps you need to explain it to someone else … again. We had just that experience over Christmas, when a relative who can use the word cancer quite freely about himself couldn’t manage to talk about our daughter’s health. Or perhaps he’d just forgotten.

The condition is called coeliac disease here in the UK, or celiac disease in the US, and it is pronounced SEE-lee-ak in both cases (emphasis on the first syllable). Sometimes it is known as gluten-sensitive enteropathy, or coeliac sprue, but it is all the same thing, and not fun at all.

Sometimes people debate the term – is it desirable to call it a disease when its not contagious, and (when it is properly controlled by diet) you feel perfectly healthy? An alternative is to say coeliac condition, but that can sometimes sound a bit vague. Another issue is the ‘suffering’ word. Do you say ‘I suffer from coeliac disease‘? Again, this may not be true, if you are maintaining a strict diet, as you may not be suffering at all. Apart from doughnut deprivation, of course.

We tend to go for ‘she is a coeliac‘ if the situation comes up – along the lines of ‘he’s a diabetic‘.

Occasionally, people call it coeliacs, as in ‘I’ve got coeliacs‘, which I understand, but which grates on me personally – but that’s just the pedant and the proof-reader coming out in me. ‘I’ve got pedantics‘.

Celiac/Coeliac disease and diabetes

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We’ve been aware that there is a link – or at least an association – between coeliac disease and diabetes, and a study in Denmark recommends that all children with type 1 diabetes should be screened for coeliac disease. (see Diabetes Care, November 2006, reported by Reuters).

The doctors conducting the research in Denmark identified 269 patients under 16 with type 1 diabetes, and screened them for coeliac disease – finding that over 12% had both coeliac disease and diabetes. This is significantly more than the 1% we are usually quoted by Coeliac UK.

Happily, the identified children were put onto a gluten free diet, and after two years their symptoms resolved, their weight rose and height increased (though only in those under 14 – which goes to show that early diagnosis is important).

TB more likely for those with CD

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A Swedish study has found that coeliac (celiac) disease is associated with tuberculosis, report Reuters and The British Medical Journal. The full report is available here.

The study found that patients diagnosed with coeliac disease were more likely to suffer from tuberculosis. 14,335 coeliacs were compared with almost 70,000 non-coeliacs, using records of hospital discharges between 1964 and 2003.

“The risk of TB in patients with CD was increased 3-4 fold … a diagnosis of TB more than doubled the risk of CD.”

The researchers suggested that vitamin D could be the link between the two illnesses, because coeliac sufferers can have a deficiency of the vitamin because of their restricted diet, and difficulties absorbing the vitamin. Vitamin D is important for immune system response.

So what can you do?

Sunshine is a significant source of vitamin D – so go outside for a while (but not so long that you get sunburn, obviously).

Eat more of salmon, mackerel, tuna fish, sardines, eggs or fortified milks and margarines. If you can bear it, cod liver oil is very high in vitamin D … you see, your great-grandmother was right all along.

Update: Recent funding for research projects at Monash University includes funding to investigate whether coeliac disease causes a loss of coordination or cognitive impairment.

Junk Food Rollercoaster – or Gluten Free?

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What are you going to eat, if you go to one of Britain’s top tourist attractions?

The Soil Association recently issued a report which indicated that you’d better pack a picnic, if you want to eat healthily (which, of course, for gluten sufferers, means ‘eat at all’).

Over the last few years, it has got a lot easier to eat out with a coeliac child. However, at many cafeteria type places, the only gluten free things available are a jacket potato, crisps, or occasionally a cake or strawberries. At restaurant type places where there is a child menu, there is usually nothing suitable on that menu, as it is all pizza, sausages, chicken nuggets or fish fingers – which is, I suppose, the point of the Soil Association’s report. We are used to ordering from the adult menu for our coeliac daughter – which, when she was tiny, often caused some consternation … “You do know that fish has bones in, right?”

All of which of course prompts a question or two: why is it assumed that children will only want to eat junk food? And why is it assumed that they should have a different menu from the adult version? It surely couldn’t be too difficult to create and bill for a half-size portion.

And from the coeliac point of view: if there isn’t a choice, there isn’t any fun in having a menu to choose from anyway.

10 ways to look after your gut

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It is National Gut Week here in the UK (21-27 August). Did you know that:

  • Bowel cancer kills more people in the UK than any other cancer apart from lung cancer?
  • as many as 1 in 100 people in the UK may have coeliac disease – but in most it is undiagnosed?
  • over 3,000,000 people in the UK are constipated every month?
  • as many as 1 in 3 suffer from Irritable Bowel Syndrome – and that this sometimes hides coeliac disease?

So, with your stomach in mind, here are some ways to look after your digestive system:

1. Eat a balanced diet. Yes, this does mean eat some fruit and vegetables. A balanced diet should include:

* starchy foods such as rice, gluten free cereals and potatoes
* fruit and vegetables,
* proteins, such as meat and fish, nuts, beans and pulses
* milk and dairy foods (but not if you’re lactose intolerant, obviously)
* small amounts of fat and sugar.

See NHS Direct for more.

2. Grill, bake, poach or steam your food rather than frying it. This will keep the nutritional value high, and keep the fat content lower. As an example, Delia offers instructions on how to how to poach and steam fish.

3. Aim to get your 5 a day. Remember, these need to be different kinds of fruit and vegetables – five glasses of orange juice doesn’t cut it. One way of thinking of this is to aim for lots of different colours on your plate. Visit www.5aday.nhs.uk for more information.

4. Go wholegrain whenever possible – wholegrain pasta, rice and bread is likely to have more nutrients than the more processed, white variety. There are high fibre versions of some gluten free breads, and brown rice is easily available, as is some buckwheat pasta.

5. Cut back on alcohol. The government’s recommended limits on this are surprisingly low – half a bottle of wine counts as a binge. Alcohol can irritate the stomach lining, as well as reduce the effectiveness of the small intestine. Not something a sufferer from coeliac disease needs to exacerbate.

6. And drink more water. This ought to help you avoid constipation, as well as wrinkles (think about it … raisins are dried grapes).

7. Eat properly. Ideally, at mealtimes only, sitting at a table, and without rushing your meal. The Independent has been running a campaign to bring back family meals, at least on Sunday – which does have something to be said for it …

8. Sleep well. I know, easier said than done, but if you’re struggling to sleep for any reason, have a look at the Sleep Foundation, which has a lot of information and ideas.

9. De-stress. Everybody relaxes in different ways – find something that works for you, and do it.

10. Do take up some exercise. This will not only help you lose weight, but should speed up your metabolism and generally help your body work better all round – including your digestion.

11. And do use the toilet! (OK – this is a bonus thought). Don’t ‘hold on’ – if you need to go, go. The longer the waste is in your body, the more water will be removed and the drier/harder it will get. This is the slippery slope to constipation.

A pill for coeliac disease?

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The American Journal of Physiology has published an article about a new enzyme which breaks down gluten molecules as well as the T cell stimulatory peptides that cause celiac disease. This enzyme was originally developed for commercial food processing, but works best in the same kind of environment as the human stomach.

The research team think that there is now a realistic chance that eating this as a supplement would cause the gluten in the meal to degrade in the stomach before reaching the small intestine, which – as you know – is where the damage is done. Clinical trials are the next likely step.

We’ve been here before, of course, with the announcement of a potential ‘pill’ for coeliac disease – apparently the last one failed because it was deactivated by the level of acid in the stomach, and pepsin, which is found in the human stomach. And though this enzyme apparently works very quickly, in theory breaking down the large gluten molecules into smaller pieces before they could leave the stomach, would this be acceptable for very sensitive coeliacs? And what about the longer term risks of leaving coeliac disease untreated – will these risks be eliminated by using this enzyme? I shall look forward to the results of the clinical trials with great interest – and wonder who is going to volunteer to be a guineapig.

In the meantime, the only way of treating coeliac disease is with a diet free from wheat, barley and rye.