The LC-MS/MS method is extremely sensitive and can pick up on small fragments of gluten which may not be within the scope of the R5 competitive ELISA method or any ELISA method. However, what this means in real life terms of the amount of gluten which could be recognised by the body isn’t known. There is no verified method using LC-MS/MS to measure the quantity of gluten. This is important because the legal definition of gluten free is 20 parts per million (ppm) of gluten or less.

We do not know if the gluten fragments seen by the LC-MS/MS will cause an immune reaction. Some of the fragments contain sequences that, if not broken down by gut digestion, could be recognised by immune cells. However, it is likely that many of these fragments will be digested and further broken down in the gut and not be capable of triggering a reaction, but we need further research to answer these questions.

Practical experience seen in the clinics of our Health Advisory Council and Health Advisory Network, where patients are consuming gluten free fermented, hydrolysed products, has shown that most people with coeliac disease can tolerate these products.

Ginger beer is traditionally made with ginger, water, sugar and yeast. There are non-alcoholic versions of ginger beer which are carbonated and alcoholic versions which are fermented. It is the fermentation process which results in the ginger beer being alcoholic. It’s important to check the label of ginger beers as some formulations of ginger beer might contain barley malt extract to provide flavouring.

Foods and drinks that contain small amounts of barley malt extract can be eaten by people with coeliac disease if they contain 20 parts per million (ppm) of gluten or less. Ginger beers which contain barley will have barley highlighted in the ingredients list, due to allergen labelling laws, but you won’t be able to tell how much has been used from the list alone, unless the product is labelled gluten free.

Previously, we listed products which contained barley malt extract in our Food Information Services if we’d received confirmation that the product contained 20 ppm or less of gluten. Under our new policy, we are asking food manufacturers who produce products made with ingredients from gluten containing grains, such as barley malt extract, to not only confirm to us that their products have been tested and shown to have no more than 20 ppm gluten, but also to label them gluten free. In the absence of a gluten free label they will no longer be included in our food information listings. We are continuing to engage with the manufacturers to achieve a commitment to enable these products to be labelled gluten free in the future.

If you see barley malt extract listed in a product that has no other gluten containing ingredients and it is not labelled gluten free but you would like it to be suitable for a gluten free diet and labelled gluten free, please let us know by emailing foodanddrink@coeliac.org.uk.

You may also like to consider contacting the manufacturer/retailer to express your views to them too. 

If you have further questions please do not hesitate to contact our Helpline on 0333 332 2033.

We understand how frustrating it is not to be able to buy the foods you rely on normally. We have contacted DEFRA to share examples you have shared with us about the issues you’re facing finding certain food and we will be sharing data from the survey with DEFRA to help support a change in policy. We have also contacted our food industry partners to find out if they are able to help you find gluten free food.

One symptom of coeliac disease is faltering growth, or a change in growth pattern. Find out more about the symptoms of coeliac disease.

A gluten free diet should only begin once a child is formally diagnosed with coeliac disease by a healthcare professional. Find out more about diagnosing children with coeliac disease.

You need to have certain genes to develop coeliac disease so it can run in families, but not in a predictable way. 1 in 100 people have coeliac disease but the risk rises to 1 in 10 if a close family member (sibling, parent or child) has the condition.

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Symptoms of coeliac disease in children can include:

• severe or occasional diarrhoea, excessive wind and/or constipation
• persistent or unexplained nausea and vomiting
• recurrent stomach pain, cramping or bloating
• any combination of iron, vitamin B12 or folic acid deficiency
• anaemia
• tiredness
• sudden or unexpected weight loss (but not in all cases)
• mouth ulcers
• skin rash (dermatitis herpetiformis)
• tooth enamel problems
• liver abnormalities
• neurological (nerve) problems such as ataxia (loss of coordination, poor balance) and peripheral neuropathy (numbness and tingling in the hands and feet)

Take our online assessment on behalf of your child at www.isitcoeliacdisease.org.uk

Read more about diagnosing coeliac disease in children.

It is thought that one in 100 people in the UK has coeliac disease but only 36% of these people are diagnosed. We estimate there are nearly half a million people who have coeliac disease but aren’t yet diagnosed.