Coeliac disease 

Introduction 

Gluten is found in wheat, barley and rye 

Screening

Currently, screening for coeliac disease is not routinely carried out in England. The tests for coeliac disease are reasonably, but not completely, accurate. This means that routinely screening the entire population could produce a high number of false-positive results. In other words, people would be misdiagnosed as having coeliac disease when they did not have it.

Therefore, screening for coeliac disease is usually only recommended for people with known risk factors for the condition, such as having a family history of the disease. See Coeliac disease - diagnosis for more information about who should be tested for coeliac disease.

Coeliac disease, also known as celiac disease, is a common digestive condition where a person is intolerant (has an adverse reaction) to the protein gluten. If someone with coeliac disease is exposed to gluten, they may experience a wide range of symptoms and adverse effects, including:

  • diarrhoea
  • bloating
  • abdominal pain
  • weight loss
  • failure to grow at the expected rate
  • malnutrition

Coeliac disease is an auto-immune disease, which means that the body’s immune system attacks itself. When people with this condition eat gluten, this results in damage to the lining of the small intestine, which stops the body properly absorbing nutrients. The symptoms of coeliac disease can range from very mild to severe.

Gluten

Gluten is a protein that is found in three types of cereal:

  • wheat
  • barley
  • rye

Gluten is found in any food that contains the above cereals including:

  • pasta
  • cakes
  • breakfast cereals
  • most type of bread

How common is coeliac disease?

During the 1980s, before advances in testing for coeliac disease were made, the condition was mistakenly thought to be rare.

However, coeliac disease is now known to be a common condition that affects approximately 1 in every 100 people in the UK. Women are two to three times more likely to develop coeliac disease than men. Cases of coeliac disease have been diagnosed in people of all ages.

In some cases, coeliac disease does not cause any noticeable symptoms, or it causes very mild symptoms. As a result, it is thought that at least 50% or possibly as many as 90% of cases are either undiagnosed or misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS).

The cause or causes of coeliac disease are unknown, but it is thought to be associated with a combination of genetic and environmental factors.

Outlook

If successfully diagnosed, the outlook for coeliac disease is generally good. There is no cure for coeliac disease, but switching to a gluten-free diet should help control the condition’s symptoms. See Coeliac disease - treatment for more information and advice about gluten-free diets.

The outlook for untreated coeliac disease can range from moderate to poor. Without treatment, coeliac disease can cause a wide range of potential long-term complications such as:

  • osteoporosis (weakening of the bones)
  • anaemia
  • growth defects
  • infertility
  • some types of cancer

See Coeliac disease - complications for more information.

Last reviewed: 27/04/2010

Next review due: 27/04/2012

Comments are personal views. Any information they give has not been checked and may not be accurate.

IdioSyncrasy said on 27 April 2012

Much as I sympathize with many of the sufferers on this site there isn't anything you can do about it, your born with it, I was diagnosed with it during the war & my parents had to bake my bread as there wasn't coeliac food available & I had a bad time growing up with it.
When i reached my teens I thought it's not going to go away so deal with it, I went onto a strict diet & have stayed on it all my life, when you get your head round the problem it's quite easy to deal with, it caused me to eat a healthy diet from then onwards, I'm now nearly 70 my cholesterol is 3.7 my BMI is 22.6 my BP is 118/76 & resting pulse rate is 55.
My best advise to all sufferers is get your head round it, it's not going to go away so there is no point in wasting your time winging, life's not fair so get over it & you can still lead a healthy & active life.
Hope this helps.
Mike

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wansanshoo said on 21 March 2012

Before I post, I will apologize in advance to any sensible ceoliacs. My brother was diagnosed when he was three, he is now thirty two, and has always lived a gluten free lifestyle. As I read these posts I get extremely frustrated, there is a vast array of gluten free products available out there certainly not as many as there should be, but more than enough to live a 'normal' healthy lifestyle, it is only laziness that prevents you eating properly, I do have sympathy for you, it can't be easy giving up food you have taken for granted, however as my brother says there is practically nothing you used to eat that you cannot find a gluten free version. The difference in the amount and quality of gluten free products now available compared to the 'sawdust' based products of the previous twenty years is vast, think yourself lucky you are only having to change your diet now. Once again I give my sympathy to you all, but it is not the end of the world. From a personal point of view paggy 304 you ain't missing much at pizza hut, and lilwead, my brother has worked in the building game for five years now, so you will get enough energy in your food once your body gets used to the diet, keep up with it the symptoms are much worse than the cure. Keep yer chin up all ceoliacs.

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ScottishBadger said on 16 February 2012

It has been 38 years now since I was diagnosed with coeliac diesease.I am 41 and it hasnt got the better of me yet!

I have never tasted "normal" bread or pastry and have always wondered what a chocolate eclair or doughnut would be like.

I know it must be difficult for people who have been use to eating freely rather than being told to suddenly eat "free-from"; but you will be amazed at how much you really can eat!

There are alot of companys looking for your money so shop around for what tastes good too you. If your like me and dont mind prescription bread *free prescriptions in Scotland then I can tell you I order hgh fibre sliced bread and have no shame in saying I also get digestive biscuits to "dunk " in my tea at work.

If your struggling...try not to be tempted to stray, especially when with friends (trying to fit in) as its not worth it and neither are they if thats what you have to do, when im cooking for friends or at a dinner party ... we all have wheat free! (one organic wheat free pasta comes close to the real deal according to non coeliac guests)

Remember its not the end of the world, once you get the hang of it you will not only feel better, but look better too.

High points: Spicy food and chocolate (not together!)
Low points: Wedding buffets (You just know your going to go hungry!)

Ive had Highs and Lows throughout my life with coeliac condition but im still loving life without the feel sorry factor, its all character building in the end ;)

Scottish Badger X

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ScottishBadger said on 15 February 2012

It has been 38 years now since I was diagnosed with coeliac diesease.I am 41 and it hasnt got the better of me yet!

I have never tasted "normal" bread or pastry and have always wondered what a chocolate eclair or doughnut would be like.

I know it must be difficult for people who have been use to eating freely rather than being told to suddenly eat "free-from" but you will be amazed at how much you really can eat!

There are alot of companys looking for your money so shop around for what tastes good too you. If your like me and dont mind prescription bread *free prescriptions in Scotland then I can tell you I order Juvela hgh fibre sliced bread and have no shame in saying I also get Juvela digestive biscuits to "dunk" in my tea at work.

If your struggling...try not to be tempted to stray, especially when with friends (trying to fit in) as its not worth it and neither are they if thats what you have to do, when im cooking for friends or at a dinner party ... we all have wheat free! (Dove Farm organic wheat free pasta comes close to the real deal according to non coeliac guests)

Remember its not the end of the world, once you get the hang of it you will not only feel better, but look better too.

High points: Spicy food and chocolate (not together!)
Low points: Wedding buffets (You just know your going to go hungry!)

Ive had Highs and Lows throughout my life with coeliac condition but im still loving life without the feel sorry factor, its all character building ;)

Scottish Badger X

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jmhzx said on 08 December 2011

i hate this condition. 6 months gluten free with only a few gluten accidents and still crippled by nausea, diarrhoea, skin itching and i've put on a stone because it's so hard to eat as I used to. My doctor is harsh, critical and thinks I should "just get on with it" and thinks I'm a complainer.

I'm desperate to see some change.

I've tried to get prescription foods but my GP's surgery couldn't get me what I wanted so they offered me 8 really basic items rather than the 18 items I've chosen.

.....and I really, really miss a pint of cold lager in the pub. Thankfully, cider is a decent alternative.

I was diagnosed 3 years ago but because of the lack of gluten free food and information I didn't do anything about it. in the 2 years since, there has been massive moves forward. so it's easier but by no means easy.

when will the symptoms go away?

John in Brighton


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rankini said on 26 August 2011

Best thing to do is join the Coeliac soceity, they produce a book each year helping with food choices. I also get bread, pizza bases, flour, biscuits and pasta through prescription. (Buy a yearly one).
It is easier if you can make your own food as then you can restrict the sugar etc content although I for one am unable to make pastry!
Do stick with the diet as you will feel so much better and you weight will adjust.

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CoeliacChic said on 03 July 2011

i have been diagnosed as a coeliac for about 3 months but am only 17. it is very hard especially as i have developed other medical conditions and diseases :(

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paggie304 said on 05 October 2010

I have been diagnosed a ceoliac for 9 years now as i am only 16 this is rather frustrating as i can not do the same things as my friends. Normal activities like going to pizza hut are not available for me as unless i eat salad there is no gluten free option. i agree with the first comment above that it has gotten easier though, sainsburys range is great but it comes at a price a simple packet of biscuits can range to £3.00 meaning they have to be bought as a treat. If you live in edinburgh their are some great restaurants such as "mamas" in the grass market who fully accomodate ceoliacs and i would highly recommend. I agree with the second coment above as i have also gained weight due to the increased sugar content in gluten free foods but there are hundreds of easy quick recipes which can be adapted so that they are gluten free also simple things like baked potatoes which i often find myself living of. This article is very helpful as it gives a brief honest outline about what the condition is. In reply to the above comment tehir are healthy cereals such as porridge and cornflakes available from scotmid and sainsburys they are slightly more expensive but worth the cost. I would recommend not going off the gluten free diet as i done this in an attempt to prove i had "grown out of it" but this is not the case i felt alot worse of after doing this and became very unhealthy and ill. i hope things get easier for you :) being a ceoliac is not all bad.

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PJ2010 said on 17 August 2010

Hi there,
I just read your comment (lilwead) and it's made me register to the site. I've been diagnosed coeliac now for about 4 years. At first, it was a nightmare, but after a while it just becomes part of your day to day routine, and I'm now by far at my healthiest.

If your having trouble, look for the book 'Gluten free for Dummies' - it's in the yellow 'for dummies' series. It saved my life in the first year - its got great tips and is really easy to follow and makes you realise that this is not the most difficult thing in life.

It's so important not to start eating gluten again. You may not have had many symptoms but I can tell you from experience they can come out of nowhere and they are not pleasant.

You will discover so many good foods that you can eat. For cereal, try doves farm cereal flakes (kinda like special k), or mesa sunrise flakes. 'Genius' bread is also amazing - my non-coeliac boyfriend often eats it instead of regular bread. What country are you in? If its the UK - go to a big sainsbury's - they've got good choice and most of the above.

I've also discovered so many easy ways to cook 'normal' food that just happens to be gluten free. If weight is an issue, for one meal try brown rice (or any rice) with pesto. and put in any kind of veg or meat as you like. (tuna / peas / peppers). its soo good, cheap, and so quick.

Finally, there are loads of restaurants out there now that have gluten free menus, and a lot of half-decent ones will know what you mean and cater for you.

Hope this helps. Hang in there - once you get used to it you'll become so much easier.

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lilwead said on 15 June 2010

Before diagnosis, I'd finally begun to lose the weight that had plagued me for years. I was eating healthily, grains and fruit etc. Only to find on a routine blood test that I was anaemic. I'm so upset and depressed that since going to a gluten free diet,I've put on more weight than I'd originally lost. I ate so much fruit and veg at the start of becoming gluten free that I feel physically sick sometimes at the thought of eating it. All I ever get told by the dietician or nurse and dr is 'that's the diet, stick to it', maybe in slightly different words. After a day working in a garden centre dealing with everything from plants to 1 ton dumpy bags of aggregate, I feel even more exercise is beyond me. I'm seriously considering giving up the gluten free lifestyle just so I can lose weight and save some money, due to most gluten free products averaging 4 x the cost of standard food. It is NOT an easy diet to follow when you're a reasonable cook, even worse when you loathe cooking as much as I do. I really don't have the time (or inclination) to stand there and cook from scratch when I get home from work 9.30 at night. I get certain products on prescription, but NOT a healthy breakfast cereal, why?. NICE has passed biscuits on prescription, but not pure uncontaminated porridge oats, where is the logic in that?.

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Is it a food allergy or intolerance?

Around 2% of people in the UK have a food allergy, but many more have a food intolerance

Find and Choose Hospitals for coeliac disease