Coeliac disease - Treatment 

Treating coeliac disease 

The Crossed Grain symbol – created by Coeliac UK and promoted by coeliac organisations worldwide – is a food labelling symbol that confirms that a labelled food product is gluten-free 

Refractory coeliac disease

A rarer type of coeliac disease is refractory coeliac disease. In this form of the condition, for reasons that are still unclear, the symptoms continue to persist even when a person has switched to a gluten-free diet.

It is estimated around 1 in every 140 people with coeliac disease will develop the refractory form of the condition.

If you do develop suspected refractory coeliac disease, it is likely you will be referred for a series of tests to make sure your symptoms are not being caused by some other condition.

If no other cause can be found and the diagnosis is confirmed, you will likely be referred to a specialist. Treatment options include steroid medication (corticosteroids), which can help block the harmful effects of the immune system.

Living with a long-term health condition

Seven simple steps to make day-to-day living with a long-term health condition easier

Coeliac disease is usually treated by simply excluding foods that contain gluten from your diet.

This prevents damage to the lining of your intestines (gut) and the associated symptoms, such as diarrhoea and stomach pain.

If you have coeliac disease, you must give up all sources of gluten for life because eating foods that contain it will cause your symptoms to return, as well as long-term damage to your health.

This may sound daunting, but your GP can give you help and advice about ways to manage your diet.

Your symptoms should improve considerably within weeks of starting a gluten-free diet.

However, it may take up to two years for your digestive system to heal completely. You will also need to return to your GP for regular check-ups.

A gluten-free diet

When you are first diagnosed with coeliac disease, you will be referred to a dietitian to help you adjust to your new diet without gluten. They can also ensure your diet is balanced and contains all the nutrients you need.

If you have coeliac disease, you will no longer be able to eat foods that contain barley, rye or wheat, including farina, graham flour, semolina, durum, cous cous and spelt.

Even if you only consume a small amount of gluten, such as a spoonful of pasta, you may have very unpleasant intestinal symptoms. If you keep consuming gluten regularly, you will also be at greater risk of osteoporosis and cancer in later life.

Read more about complications of coeliac disease.

As a protein, gluten is not essential to your diet and can be replaced by other foods. Many gluten-free alternatives are widely available in supermarkets and health food shops, including pasta, pizza bases and bread. A range of gluten-free foods is also available on prescription.

Many basic foods – such as meat, vegetables, cheese, potatoes and rice – are naturally free from gluten so you can still include them in your diet. Your dietitian can help you identify which foods are safe to eat and which are not. If you are unsure, use the lists below as a general guide.

Foods containing gluten (unsafe to eat)

If you have coeliac disease, do not eat the following, unless they are labelled as gluten-free versions:

  • bread
  • pasta
  • cereals
  • biscuits or crackers
  • cakes and pastries
  • pies
  • gravies and sauces

It is important to always check the labels of the foods you buy. Many foods – particularly those that are processed – contain gluten in additives, such as malt flavouring and modified food starch.

Gluten may also be found in some non-food products, including lipstick, postage stamps and some types of medication. 

Cross-contamination can occur if gluten-free foods and foods that contain gluten are prepared together or served with the same utensils.

Gluten-free foods (safe to eat)

If you have coeliac disease, you can eat the following foods, which naturally do not contain gluten:

  • most dairy products, such as cheese, butter and milk
  • fruit and vegetables
  • meat and fish (although not breaded or battered)
  • potatoes
  • rice
  • gluten-free flours, including rice, corn, soy and potato

By law, food labelled as gluten free can contain no more than 20 parts per million (ppm) of gluten.

For most people, these trace amounts of gluten will not cause any problem. However, there are a minority of people with coeliac disease who are unable to tolerate even trace amounts of gluten and require a diet completely free from cereals.

Read information about the law on gluten-free on the Coeliac UK website.

The Coeliac UK website also contains information and advice about living with the condition, including a gluten-free diet and lifestyle.

Oats

Oats do not contain gluten, but many people with coeliac disease avoid eating them because they can become contaminated with other cereals that do contain gluten.

If, after discussing this with your health professional, you want to include oats in your diet, check the oats are pure and there is no possibility contamination could have occurred.

It is recommended you should avoid eating oats until your gluten-free diet has taken full effect and your symptoms have been resolved. Once you are symptom free, gradually reintroduce oats into your diet. If you develop symptoms again, stop eating oats.

Advice on feeding your baby

Do not introduce gluten into your baby's diet before they are six months old. Breast milk is naturally gluten free and all infant milk formulas are, too.

If you have coeliac disease, Coeliac UK recommends gluten-containing foods are introduced gradually when a child is six months old. This should be monitored carefully.

Read more about support for parents on the Coeliac UK website.

Other treatments 

As well as eliminating foods that contain gluten from your diet, a number of other treatments are available for coeliac disease. These are described below.

Vaccinations

In some people, coeliac disease can cause the spleen to work less effectively, making you more vulnerable to infection.

You may therefore need to have extra vaccinations, including:

However, if your spleen is unaffected by coeliac disease, these vaccinations are not usually necessary.

Supplements

As well as cutting gluten out of your diet, your GP or dietitian may also recommend you take vitamin and mineral supplements, at least for the first six months after your diagnosis.

This will ensure you get all the nutrients you need while your digestive system repairs itself. Taking supplements can also help correct any deficiencies, such as anaemia (a lack of iron in the blood).

Dermatitis herpetiformis

If you have dermatitis herpetiformis (an itchy rash that can be caused by gluten intolerance), cutting gluten out of your diet should clear it up.

However, sometimes it can take longer for a gluten-free diet to clear the rash than it does to control your other symptoms, such as diarrhoea and stomach pain.

If this is the case, you may be prescribed medication to speed up the healing time of the rash. It is likely this will be a medicine called Dapsone, which is usually taken orally (in tablet form) twice a day.

Dapsone can cause side effects, such as headaches and depression, so you will always be prescribed the lowest effective dose.

You may need to take medication for up to two years to control your dermatitis herpetiformis. After this time, you should have been following a gluten-free diet long enough for the rash to be controlled without the need for medication. 

Page last reviewed: 31/07/2014

Next review due: 31/07/2016

Ratings

How helpful is this page?

Average rating

Based on 186 ratings

All ratings

Add your rating

Comments

The 8 comments posted are personal views. Any information they give has not been checked and may not be accurate.

JollyDH said on 15 November 2013

I have had rash which the dermatologist thought was dermatitis herpetiformis but the immunoflouresence biopsy was negative. Could this have been because I had been on a gluten free diet for 3 weeks and was on oral and topical cortisone?

Report this content as offensive or unsuitable

Mariana89 said on 24 August 2013

Hi, I have been in UK for 2 months and I would like to stay here for long time. I am coeliac, is it possible to receive glutenfree food on prescription, although I am overseas? Thanks for answer, Mariana

Report this content as offensive or unsuitable

Lesley Suggitt said on 05 September 2012

Can anybody help me with this please? I am waiting to have a blood test to see if I have Coeliac Disease, (I have all the symptoms), and I need to know if there is a definitive list of all food and drink that contain gluten. Thank you for your help.

Report this content as offensive or unsuitable

eckyjeck said on 07 December 2011

I was diagnosed with DH over 45 years ago and have been on a gluten free diet for over 30.
We get glutenfree flour from the doctor and bake our own bread most of the time. My wife cooks from scratch most of the time and always includes lots of fresh vegetables. I am lucky that I can eat oats so have porridge every morning.

WE buy as little processed foods as possible because we were both brought up before the days of on the shelf ready meals. On the whole we avoid them because many can be quite salty as well as have wheat or some other contaniment in the ingredients list.

What really annoys me is to read a product label to find an allergy warning - contains gluten and oats - when oats are the only cereal in the ingredient list. Does it mean that the product is contaminated with wheat, barley, rye or spelt? or that the product contains oat gluten? or is it that the producer does not fully appreciate that the label must be accurate for anyone on a restricted diet.

Eating out is getting less of a problem. I can now be more adventurous as more chefs are catering for diverse diets. Many more understand the gluten free diet.

Overall I enjoy a reasonably healthy lifestyle being fairly active. I take the dog for a 6 mile hike 2 or 3 times a week as well as participate in foot orienteering. In addition to DH I also suffer from COPD having lost 40% of my lung capacity.

It does not need to be expensive to live on this diet. Get flour on prescription and bake your own bread, cakes and biscuits. Much cheaper and better than buying the ready made.

Report this content as offensive or unsuitable

dorsetlass said on 17 August 2011

I was diagnosed as coeliac in July 2010 after several miserable years of symptoms which were put down to everything from M.E to irritable bowel disease. I was also found to be dairy intolerant.

I immediately stopped eating foods containing gluten & dairy & lost 3 stone in 6 months. I found gluten easy to avoid, even when eating out, but avoiding dairy as well proved to be much more difficult.

I now eat a very healthy diet - everything is fresh & I have begun to enjoy cooking & finding ways to make quick, healthy & nutritious meals on a budget. I realise that I ate many pre-preared meals before (ding dinners as my friend calles then) & cutting them out saved me money.

Fresh fruit, veg, meat & fish are lovely & I feel better than I have for many years. The only exception I make is Genius bread for when I need to take a sandwich to work, although most days I make a salad or home-made soup to take.

My symptoms subsided within a few days but it has taken about 12 months for my digestive system to settle down completely.

I would never go back to gluten rich food because I feel so good now. A strange side effect is that after being a nail biter for 58 years, & finding nothing that worked to stop me, within weeks of giving up gluten I noticed that my nails had grown & I had no desire to bite them. I'm not saying that gluten was the cause, just reporting the facts.

If you have been diagnosed as coeliac, please know that it isn't impossible to give up foods that contain gluten & most supermarkets now have a free-from or healthy eating isle with foods for us.

Waitrose now do ready-made gluten free sandwiches and I feel sure that others will follow, especially as there seem to be more and more of us diagnosed properly now, instead of being mis-diagnosed.

My GP only tested for coeliac after I had read about it on the internet and I specifically asked him to.

My advice is persevere.

Report this content as offensive or unsuitable

Bluefloss said on 15 June 2011

Please do not go back on ordinary food I did just that and ended up in hospital for surgery. Eat healthy fresh veg and meat you can get most of your needs on prescription if the UK. I would recommend Juvela fresh bread (on prescription) you can hardly tell any difference. Good luck I have been diagnosed for 24 yrs and my husband eats gluten free except for his bread ( he doesn't know any difference) I have put regained a bit of weight but remained same weight for last ten years (not over weight)

Report this content as offensive or unsuitable

Coeliac1 said on 08 February 2011

I was diagnosed in Oct 2010 since then my immune system is nil, any cold, virus that is going around I get ( I was very rarely ill before) I have also gained about 1.5 stone. I do not eat gluten free cakes or biscuits because of the extra sugar in them and I feel more depressed now then before I was diagnosed. I am having 3 monthly vit b12 injections to give me more energy but still find exercise draining. I hate everything that goes with this disease but a gluten free diet is the only thing to help my symptoms. Most gluten free can be placed on prescription, chat to your GP.

Report this content as offensive or unsuitable

lilwead said on 15 June 2010

The only way my coeliac was picked up was by a routine blood test that said I was anaemic. I had no other symptoms. Since going gluten free, I've put on a lot of weight and am desperate to lose it. So desperate that I'm even considering going back to normal food. It's no good people telling me I must do this or that, I want to know if they've tried living gluten free for any length of time, and how much it costs them, emotionally and financially. One of the few illnesses that can be cured by diet alone...and a very large monthly wage packet.

Report this content as offensive or unsuitable

The eatwell plate

Use the eatwell plate to get the balance of your diet right. It shows you how much to eat from each food group

Map of Medicine

See more about coeliac disease by going to the Map of Medicine

Find and choose services for Coeliac disease