Coeliac disease

Ruth passmore, health policy officer, Coeliac uK

The only treatment for coeliac disease is lifelong adherence to the gluten-free diet and undiagnosed coeliac disease can result in long-term complications including osteoporosis, unfavourable pregnancy outcomes and a small increased risk of intestinal malignancy.

pRevalenCe One in 100 people in the UK are estimated to have coeliac disease (1); however, the latest statistics show that only 24 percent of those with the condition are diagnosed (2). Rates of diagnosis are also known to vary by socio-economic status, with children living in more socio-economically deprived areas in the UK less likely to be diagnosed with coeliac disease (3).

With only 24 percent of people with coeliac disease currently diagnosed, there are around half a million people in the UK who are living with undiagnosed coeliac disease. This year, Coeliac UK’s awareness week will take place on 11th to 17th May and will focus on reaching the people currently living with undiagnosed coeliac disease in the UK.

symptoms Coeliac disease affects different people in different ways. Signs of coeliac disease can affect any part of the body and are not always limited to gastrointestinal symptoms. Symptoms range from mild to severe and can include the following: • Frequent diarrhea • Anaemia • Fatigue • Nausea • Vomiting • Bloating • Constipation • Weight loss • Mouth ulcers • Gas • Cramping • Abdominal pain

Coeliac disease can present at any age but is most commonly diagnosed in people aged 50 to 69 years (2). From initial onset of symptoms, it can take several years for a patient to have a confirmed diagnosis with coeliac disease and research has shown that, on average, it takes 13 years from the initial symptoms to diagnosis (4). Awareness Week 2015 aims to create a stronger link between these symptoms and coeliac disease and to encourage people who are experiencing these symptoms to seek a diagnosis.

Some gastrointestinal symptoms of coeliac disease are similar to the signs of irritable bowel syndrome (IBS) and misdiagnosis of IBS in coeliac disease is common. Research shows that one in four people diagnosed with coeliac disease have previously been treated for IBS (5). Because of this, the NICE guideline for Diagnosis and Management of Irritable Bowel Syndrome in Primary Care (2015) (6) recommends that coeliac disease is ruled out before diagnosing IBS.

Role of Genes anD assoCiateD ConDitions There is a genetic association between coeliac disease and the HLA (human leukocyte antigen) gene. Two variants of the HLA DQ gene are associated with coeliac disease, HLA DQ2 (found in 95 percent of people with coeliac disease) and HLA DQ8 (found in three to six percent of people with coeliac disease) (7). The absence of these genes can rule out a diagnosis of coeliac disease, but cannot be used alone to confirm a diagnosis as 30 percent of the general population also carries the HLA-DQ2 gene (7). Because of this genetic component of coeliac disease, the chance of having the condition is higher (one in 10) for people with a first degree family member diagnosed with coeliac disease than for the general population (one in 100).

Serving suggestion

The genes that predispose people to coeliac disease are also linked to other autoimmune diseases and there is a higher prevalence of coeliac disease in people with other autoimmune disorders such as Type 1 diabetes and autoimmune thyroid disease. The NICE 2009 guidelines for Recognition and Assessment of Coeliac Disease (8) recommend serological testing for coeliac disease in patients with autoimmune thyroid disease, Type 1 diabetes or people with first degree relatives with coeliac disease.

GettinG DiaGnoseD A full medical diagnosis is important to: • provide the benefit of regular follow-up care; • Maximise adherence to the gluten-free diet; • Ensure that symptoms are not due to other unsolved medical problems; • Identify and treat any complications.

Coeliac disease is diagnosed by biopsy following a positive blood test. The blood tests measure endomysial antibodies (EMA) and tissues transglutaminase antibodies (tTGA) which are produced by people with coeliac disease in response to gluten ingestion. It is important to inform people who are undergoing testing for coeliac disease that they must continue to eat a gluten-containing diet before testing, as eliminating gluten from the diet could result in a false-negative test result.

Once diagnosed, patients should be referred to a dietitian to receive advice on following a gluten-free diet, as adhering to a gluten-free diet requires significant dietary modification. As part of the initial consultation, patients should also be given advice about gluten-free foods available to them on prescription.

Rates for adherence to the gluten-free diet can vary between 42 to 91 percent (9) and gluten-free staples on prescription have been re-

lated to lower intentional gluten consumption sCottish Gluten-fRee fooD sCheme (10). Prescriptions play an important role in In most parts of the UK, prescriptions for gluten-free following the gluten-free diet, as availability foods are issued by the GP and dispensed by the and cost remain a barrier to accessing gluten- pharmacist. However, in Scotland and some other free food. Gluten-free staple foods in super- parts of the UK, innovative pharmacy-led supply markets are three to four times more expen- schemes are in place which demonstrate cost savsive and are not readily available in budget ings, time savings for GPs and improved access to supermarkets and corner shops (11). Gluten- gluten-free food for people with coeliac disease. free food on prescription can, therefore, be es- The Scottish Government has developed a pecially important to people with limited mo- national Gluten-Free Food Service across Scotbility or limited access to large supermarkets land. The service has been running as a pilot and to people living on a restricted budget. since April 2013 and is currently under review.

After diagnosis, current guidance from Under the scheme, people with coeliac disease the British Society of Gastroenterology (12) order and receive gluten-free foods directly suggests an annual review of symptoms and through their pharmacist, giving greater condietary management and assessment of the trol over the amount and type of gluten-free patient’s risk of complications. The current staple foods ordered each month. The Scottish NICE guidelines for Recognition and Assess- pilot scheme has created interest from other ment of Coeliac Disease (8) do not cover man- areas including Wales where the results of the agement of coeliac disease; however, an up- pilot are awaited with interest. Northamptondated version of the NICE guidelines which shire, Cumbria, the Isle of Wight and Bedfordcover recognition, assessment and manage- shire are also running successful pharmacy-led ment of coeliac disease are currently under schemes which serve as excellent models for public consultation and are expected to be Clinical Commissioning Groups looking to Glutafin NHD 1-2 page ad HR aw.pdf 1 28/04/2015 10:40 published in September 2015. implement similar schemes.

As part of Dr. Schär, Europe’s leading manufacturer of gluten free food, we’re committed to supporting you and your coeliac patients.

� Support for newly diagnosed patients,

� The largest range of gluten free

� Free access to the Dr. Schär Institute,

� Free-phone careline supported by

� Clinic attendance and healthcare

To request your free healthcare professional pack or Taster Box, please contact us at professionals@drschaer.com or call our careline 0800 988 8470 (*offer limited to rst 100 requests). To register for free access to our online healthcare professional resource, including CPD learning modules, latest research abstracts and expert webinars, visit www.drschaer-institute.com

hoW to Get involveD in CoeliaC Disease aWaReness WeeK 2015 If you would like to help raise awareness of coeliac disease and help diagnose the half a million people living with undiagnosed coeliac disease, you can get involved in a number of ways: • Screen your IBS, Type 1 diabetes and autoimmune thyroid disease patients for coeliac disease. • Refer patients to www.isitcoeliacdisease. org.uk which provides information and advice for the general public on the symptoms and risk factors associated with undiagnosed coeliac disease. The site also

features a new self-assessment tool to help people undiagnosed with coeliac disease to decide whether they need to seek further medical advice about a diagnosis of coeliac disease. • Refresh your knowledge of coeliac disease by visiting the healthcare professional resources section of www.isitcoeliacdisease. org.uk. • Join the Coeliac UK Healthcare Professional (HCP) Network (free) for access to the latest research findings into coeliac disease and the gluten-free diet www.coeliac.org.uk/

HCPNetwork.

References 1 Bingley PJ, Williams aJ, Norcross aJ et al (2004). Undiagnosed coeliac disease at age seven: population based prospective birth cohort study. BMJ

population-based study. am J Gastroenterol 2014;109:757-768 3 Zingone F, West J, crooks cJ et al (2014). Socioeconomic variation in the incidence of childhood coeliac disease in the UK. arch Dis child; 0:1-8. doi: 10.1136/archdischild-2014-307105 4 Gray aM and Papanicolas IN (2010). Impact of symptoms on quality of life before and after diagnosis of coeliac disease: results from a UK population survey. BMc Health Serv Res 10: 105. doi: 10.1186/1472-6963-10-105 5 card tR, Siffledeen J, West J et al (2013). an excess of prior irritable bowel syndrome diagnoses or treatments in coeliac disease: evidence of diagnostic delay. Scand J Gastroenterol 48(7): 801-7. doi: 10.3109/00365521.2013.786130 6 National Institute for Health and clinical excellence (2015). Irritable bowel syndrome in adults: diagnosis and management of irritable bowel syndrome in primary care www.nice.org.uk/guidance/cg61 (accessed 13 March 2015) 7 Kang JY, Kang aD, Green a et al (2013). Systematic review: worldwide variation in the frequency of coeliac disease and changes over time. alimentary

Pharmacology & therapeutics 38: 226-245 8 National Institute for Health and clinical excellence (2009). coeliac disease: recognition and assessment of coeliac disease. www.nice.org.uk/ guidance/cg86 (accessed 13 March 2015) 9 Hall NJ, Rubin G and charnock a (2009). Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. alimentary

Pharmacology & therapeutics, 30, 315-330. 10 Hall N, Rubin G and charnock a (2013). Intentional and inadvertent non-adherence in adult coeliac disease. a cross-sectional survey. appetite 68 5662 11 Singh J and Whelan K (2011). Limited availability and higher cost of gluten-free foods. Journal of Human Nutrition and Dietetics, 24, 479-486 12 Ludvigsson JF, Bai Jc, Biagi F et al (2014). Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology

Gut 2014; 63:1210-1228 doi:10.1136/gutjnl-2013-306578

328(7435): 322-3. doi: http://dx.doi. org/10.1136/bmj.328.7435.322 2 West J, Fleming KM, tata LJ et al (2013). Incidence and prevalence of coeliac disease and dermatitis herpetiformis in the UK over two decades:

NHDmag.com DIGITAL ONLY ISSUE

Issue 104 May 2015

ISSN 1756-9567 (Print)

Dr Carrie Ruxton p11

RETHINKING DAIRY . . . p29

Dr Justine Butler Senior Researcher and Writer Viva!Health COELIAC DISEASE HOSPITAL FOOD DIABETES SPECIALIST INFANT FORMULAS

WEB WATCH NEW RESEARCH

Dr Carrie Ruxton phD, RD freelance Dietitian

dr Carrie ruxton is a freelance dietitian who writes regularly for academic and media publications. A contributor to tV and radio, Carrie works on a wide range of projects relating to product development, claims, Pr and research. her specialist areas are child nutrition, obesity and functional foods. www.nutritioncommunications.com @drcarrieruxton Despite the hard structure of bone, it remains in a constant state of turnover - a cycle known as bone remodelling. Special cells known as osteoclasts break down (resorb) bone, while other cells called osteoblasts (bone-forming cells) build bone back up. This is difficult to measure directly which is why indirect markers, such as bone mineral density (BMD), parathyroid hormone (PTH), insulin-like growth factor 1 (IGF1), urinary calcium and carboxy-terminal collagen crosslinks (CTX) are used to assess bone health.

In the first two decades of life, bone is built up until the maximum capacity is reached, known as peak bone mass. After this time, bone begins to resorb, a process that accelerates with age and exposure to certain lifestyle and hormonal changes (2). With age, both men and women are at risk of bone loss as a result of declining levels of sex hormones. However, in women this tends to be more pronounced, as oestrogen deficiency is one of the main causes of postmenopausal bone loss (3). Osteoporosis was historically seen as a normal burden of ageing, but the evidence now suggests that weight-bearing exercise and appropriate diet can sustain normal bone density and reduce the risk of fractures

What influenCes bone health? Several lifestyle factors impact on the risk of developing osteoporosis, including low physical activity, smoking, excess alcohol consumption and low intakes of bone health nutrients. The most important of these nutrients are vitamin D and calcium which work in combination to strengthen and stabilise bone tissue.

Calcium and vitamin D act directly, by modifying bone turnover, as well as indirectly, through changes in hormone secretion and mineral absorption (4). Calcium is essential for the formation of strong bones, giving them strength and rigidity, while vitamin D works by boosting calcium absorption in the gut. This, in turn, helps to maintain the correct ratio of calcium and phosphorus in blood.

Other nutrients such as magnesium, phosphorous and fluoride also reinforce the processes of bone formation, while iron, zinc, boron, copper and manganese help support normal bone metabolism (5). Carotenoids (vitamin A), vitamins B, C and K are thought to support bone health, although the evidence for vitamin K is stronger than for the others.

The role of many of these nutrients in bone health has been recognised by the European Nutrition and Health Claim regulations which have authorised bone maintenance claims for protein, vitamins C, D and K, calcium, magnesium, zinc and phosphorous (Table 1) (6). Food and drink products can, therefore, make a bone health claim as long

table 1: approved eu claims for bone health nutrients protein Contributes to the maintenance of normal bones. Vitamin C Contributes to normal collagen formation for the normal function of bones and cartilage. Vitamin d Contributes to normal absorption and utilisation of calcium and phosphorous. Contributes to normal blood calcium levels. Contributes to the maintenance of normal bones. Calcium Calcium is needed for the maintenance of normal bones. Calcium plus Calcium in combination with vitamin D may reduce the loss of bone mineral in vitamin d* postmenopausal women. low bone mineral density is a risk factor in the development of osteoporotic bone fractures. Vitamin K Contributes to the maintenance of normal bones. magnesium Contributes to the maintenance of normal bones. Zinc Contributes to the maintenance of normal bones. phosphorous Contributes to the maintenance of normal bones.

as they contain sufficient amounts of at least one of these nutrients, i.e. at least 15 percent of the recommended daily allowance (RDA) per 100g for vitamins and minerals, or at least 12 percent total energy as protein.

aDequaCy of bone health nutRients Data from the UK National Diet and Nutrition Survey (NDNS) (7) suggests that a significant proportion of adults and teenagers have inadequate intakes of bone health minerals, while vitamin C intake is satisfactory (Table 2).

As the NDNS did not report intakes of vitamin K and phosphorus, no comment can be made on these; however, deficiency is likely to be rare. Average protein intakes far exceed recommendations and are not a problem for most people.

It is more difficult to comment on dietary inadequacy of vitamin D, as the UK has not yet set dietary reference values for most of the population. However, compared with the labelling RDA of 5µg, intakes of vitamin D are low at 2.4µg in children and 3.6µg in adults. Elderly people, who should be consuming 10µg daily, have a mean intake of 5.1µg. As most vitamin D in the body is synthesised in response to regular summer sunlight, serum 25-hydroxyvitamin D is a better indicator of vitamin D adequacy. In the latest NDNS, 12 to 24 percent of participants were vitamin D deficient (7).

impRovinG bone health Several studies have investigated the effect of vitamin D and calcium on the risk of fractures or falls. One controlled trial (8) supplemented over 3,000 elderly women with 20µg vitamin D and 1,200mg calcium daily for two years, with findings demonstrating a 43 percent lower risk of hip fractures compared with the control group. A three-year trial (9) which supplemented 9,600 elderly women with 10µg vitamin D/1000mg

male female male female vitamin C (mg) 1 1 1 1 Calcium (mg) 4 8 5 19 magnesium (mg) 16 11 28 52 Zinc (mg) 9 4 11 22

Key: 1inadequacy defined as intakes below the Lower Reference Nutrient Intake.

Source: Bates et al (20 As falls are the biggest contributor to fracture risk, improving muscle strength and balance in older people are important preventative measures.

calcium per day reported a 16 percent reduction in risk of fracture. Other supplementation trials have not found significant changes in the incidence of fractures, perhaps due to an inadequate vitamin D dose or lack of adjustment for baseline vitamin D status.

Greater success has been seen when BMD is targeted. As reported in a review (10), five out NHD Magazine_0415.ai 1 14/4/15 5:11 PM of nine clinical trials of vitamin D supplementation, and 16 out of 22 studies on combined vitamin D and calcium supplementation produced statistically significant improvements in BMD, with particular benefits seen in those with poor baseline vitamin D status. As falls are the biggest contributor to fracture risk, improving muscle strength and balance in older people are important preventative measures (11).

Vitamin D and calcium seem to have the

Koko Dairy Free Original + Calcium milk is a unique dairy free alternative to cow’s milk made with freshly pressed coconut milk.

Koko Dairy Free is suitable for adults and weaned children suffering from a dairy intolerance or allergy which limits their normal dietary intake of calcium. Total fat, calcium, vitamin D2 and B12 levels are matched to semi-skimmed milk.

With a taste that’s remarkably close to ordinary milk it is palatable and versatile to use in cold or hot drinks, with breakfast cereals and in sweet or savoury cooking. It allows adults and children to eat a more normal, balanced diet.

CUK-M-123

Request FREE samples and leaflets from: info@kokodairyfree.com

greatest effect on risk of fracture when given in combination. Tang et al (12) performed a meta-analysis on 29 randomised trials involving nearly 64,000 participants aged ≥50 years. Giving additional vitamin D and calcium was associated with a 12 percent reduction in risk of fracture, or a 24 percent reduction when compliance was high. For BMD, reduced rates of bone loss at the hip and spine were noted following vitamin D and calcium. Daily intakes of 1,200mg calcium and 20µg vitamin D seemed to produce the most consistent effects on bone health. A similar finding was reported by a pooled analysis of seven trials involving 68,500 participants (13). Given the low vitamin D intakes in the UK, it is unlikely that these optimal levels could be achieved without supplementation or fortification.

Two recent studies have focused on the impact of fortified dairy products on bone health in older women. One randomised controlled trial (14) reported a significant increase in IGF1, a bone formation marker, and a reduction in tartrate-resistant acid phosphatase, a marker of bone breakdown, when postmenopausal women consumed two daily servings of soft cheese fortified with vitamin D.

A similar trial (15) in elderly women found improvements in vitamin D status and IGF1, while markers of bone breakdown were seen to reduce.

Taken together, these findings indicate that calcium and vitamin D have a consistent, positive effect on bone health, as evidenced by improvements in bone markers and BMD, as well as a reduced fracture risk.

table 3: Key messages for supporting bone health

patients should be advised to eat a balanced diet, containing sufficient amounts of bone nutrients from a variety of food sources.

Calcium and vitamin D are the most important bone nutrients and work best in combination. both natural and fortified sources should be considered.

vitamin D3, the most bioavailable form of vitamin D, is present in few natural foods. therefore, patients should be encouraged to eat oily fish and eggs, as well as choosing fortified foods and supplements that contain vitamin D3, rather than D2.

patients should be advised to follow a lifestyle that supports bone health, e.g. engaging in regular weightbearing exercise and avoiding smoking and excess consumption of alcohol.

postmenopausal women, particularly elderly women in care homes, remain the group most at risk of osteoporosis and will benefit from a combination of dietary and lifestyle options to help prevent bone loss.

Regular summer sun exposure is vital for ensuring good all-year vitamin D status. fair skinned people require around 15 minutes of summer sun exposure daily without sun cream. Darker skinned people require more than this.

aDviCe to patients The ageing population in the UK, combined with risk factors such as low intakes of minerals, sedentary lifestyles and obesity, represent a growing threat to bone health. Yet, many risk factors are modifiable, creating an opportunity for dietitians to give appropriate advice to patients as suggested in Table 3 (16). Positive changes to diet and lifestyle during childhood and young adulthood can help to optimise peak bone mass, while the strategy in older patients should focus on minimising bone loss to prevent fractures and to maintain normal muscle function.

In conclusion, combinations of vitamin D and calcium appear to work better than when given alone, except for the risk of falls, which is influenced mainly by vitamin D status. Fortified dairy products offer a foodbased route for delivering additional vitamin D and calcium, while supplements are a simple, low cost way to top up calcium and vitamin D intakes. At present, year-round vitamin D supplements are recommended for children aged ≤5 years, as well as pregnant and lactating women and people aged ≥65 years (17).

References 1 National Osteoporosis Society (2011) Key Facts and Figures. www.nos. org.uk 2 Jimi e et al (2012). International Journal of Dentistry Doi: 10.1155/2012/148261 3 Rizzoli R et al (2010). Bone 46: 294-305 4 Rizzoli R (2008). clinical endocrinology & Metabolism 22: 813-29 5 Palacios c (2006). critical Reviews in Food Science and Nutrition 46: 621-628 6 european commission (2012). commission Regulation (eU) No

7 Bates B et al (2014). National Diet and Nutrition Survey: headline results from Years 1-4. London: FSa/DH 8 chapuy Mc et al (1992). New england Journal of Medicine 327: 16371642 9 Larsen eR et al (2004). Journal of Bone and Mineral Research 19: 370378 10 Laird e et al (2010). Nutrients 2: 693-724 11 Gillespie LD et al (2003). cochrane Database of Systematic Reviews 4: cD000340 12 tang BM et al (2007). the Lancet 370: 657-666 13 DIPaRt Group (2010). British Medical Journal 340: b5463 14 Bonjour JP et al (2012). Journal of Nutrition 142: 698-703 15 Bonjour JP et al (2011). Journal of Nutrition, Health and aging 15: 404409 16 Ruxton cHS (2013). Nursing Standard 27: 41-49 17 chief Medical Officers of the UK (2012). Vitamin D - advice on

432/2012. http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L :2012:136:0001:0040:en:PDF