26 minute read
Coeliac disease
anne roland lee, edD, rDn, lD nutritional services manager, schar Usa.
Anne has published a variety of research articles and has developed numerous educational materials on the gluten-free diet for patients and both clinical and food service professionals. Anne is a member of the AND Gluten Intolerance work Group which developed the Gluten Intolerance tool kit and the certificate of Training for Gluten Related Disorders.
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coelIAc DISeASe AND THe GlUTeN-FRee DIeT
Coeliac disease is a genetically mediated autoimmune disease that affects 1% of the population worldwide. The only treatment for coeliac disease is lifelong adherence to a strict gluten-free diet (GFD). Despite the current interest in the gluten-free diet, coeliac disease remains under-diagnosed and the diet is often misrepresented.
Historically, coeliac disease was thought to be a rare childhood illness that the affected individuals would eventually outgrow. Today we know that coeliac disease can be diagnosed at any time along the lifespan and, once triggered, the condition requires lifetime adherence to the GFD. As yet, researchers have not uncovered the mechanism to block or reverse the condition once it is activated.
the real nUtritional statUs oF the gFD Popular media beliefs attribute weight loss, improved athletic ability and increased overall health amongst many other health claims to a gluten-free diet. While the pillars of a GFD are indeed fruits, vegetable, protein and dairy products, it is in the carbohydrate selections that the diet often falls short of its potential.
The traditional GFD has been reported in several studies to be less nutritious that the current media beliefs.1,2,3 In the study by Dickey,3 it was found that long-term GFD adherence was associated with an average weight gain in over 80% of diet adherent patients. In the study by Hallert,2 in addition to the weight gain, 37% of the participants also showed signs of malnutrition with elevated homocysteine levels despite endoscopic results indicating a healed small intestine. A subsequent study,4 revisited the nutritional deficiencies of long-term GFD adherent coeliac patients and found similar results to Hallert and colleagues.2 In comparing the intake of the participants on a GFD to the general population controls, Hallert2 found that the number of bread servings was the same in both groups, however, the nutritional content of the gluten-free bread was inferior to its wheat-based counterpart.
In another study of usual intake patterns, Thompson and colleagues1 reviewed the food records of 34 participants, which revealed deficiencies in B vitamins, fibre, calcium and iron in the standard GFD. In the study,1 females did not meet any of the recommended dietary standards and males only met the recommendation for iron. In a subsequent study by Lee and colleagues,5 the impact of adding the ancient grains to the standard gluten-free dietary pattern was measured. The results were a statistically significant change in the nutrient profile. The nutrient profile was transformed from not meeting the dietary recommendations, as Thompson and Hallert had found, to meeting the recommendations for both men and women. The addition of only two servings of alternative grains (1/2 cup each oats and quinoa) and a serving of high fibre gluten-free bread and a biscuit changed the nutrient content two fold.
Of great concern, as revealed in the studies by Lee5 and Thompson1, the typical intake of participants with coeliac disease relied heavily on prepared foods, quick and convenience products. Gluten-free doughnuts and white rice were often the most frequently consumed carbohydrates. Gluten-free alternative grains, wholegrain based products and enriched products were seldom included in the typical intakes of the study participants. At the time of the studies, few enriched or wholegrain prepared products were readily available in the market place; however, alternative grains have been readily available for many years.
Brighter FUtUre For glUten-Free ProDUcts Thankfully, manufacturers are responding to the research and changing the nutrient profile of many of the gluten-free products. Glutenfree breads can now be found containing wholemeal brown rice instead of starches and ancient grains such as millet, buckwheat, and quinoa. Some products are now even enriched with vitamins and minerals. Pastas can now be found to be made of quinoa, black bean and red lentil, providing excellent sources of protein, B vitamins and fibre. However, availability of nutrient rich products alone does not guarantee a nutritionally balanced intake.
Careful review of clients’ usual dietary pattern is needed to identify deficiencies and encourage inclusion of higher nutrient dense gluten-free products and foods. Current practice guidelines by National Institute of Clinical Excellence (NICE),6 the British Society of Gastroenterology,7 as well as the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)8 and the Academy of Nutrition and Dietetics (AND),9 encourage the inclusion of gluten-free wholegrains, ancient grains and oats in the gluten-free diet to bridge the nutrient gap.
Adding the alternative grains into the glutenfree diet may not provide just a nutritional answer, but may also be an economic solution for many patients as well. Typically, the alternative grains are less expensive than many gluten-free products. In the study in the UK by Burden and colleagues,10 it was found that regular and quality supermarkets carried the greatest range of gluten-free products. However, they were
Nutrient Per 100gms White rice Brown rice Quinoa Buckwheat Millet Oats DV 2000 calorie diet
calories 97 112 120 92 119 371 2000
Protein g 2.02 2.32 4.4 3.38 3.51 13.7
Fat g 0.19 0.83 1.92 0.62 1.0 6.87 65
Fibre g 1.0 1.8 2.8 2.7 1.3 9.4 25
thiamin mg 0.02 0.102 0.107 0.04 0.106 0.54 1.5
riboflavin mg 0.013 0.012 0.110 0.039 0.082 0.123 1.7
niacin mg 0.29 1.33 0.412 0.94 1.33 0.823 20
iron mg 0.14 0.53 1.49 70.9 0.63 49.5 18
calcium mg 2 10 17 7 3 47 1000
typically four times more expensive than their wheat-based counterparts. It was also noted that budget stores did not carry any gluten-free products. Similar findings were reported from the United States by Lee and colleagues11 and in Canada.12 In the Canadian study,8 glutenfree products were on average 242% more expensive.
Issues of availability were found in the US11 similar to the findings for the UK. In Lee’s study11 only 36% of the gluten-free items were carried in regular supermarkets, whilst 100% of the products were available online. Lee also found that the online products were the most expensive in comparison.11 In the United States where gluten-free products are not on prescription, breads were found to be 153% more expensive, whilst biscuits and cakes were 278% more expensive. Using the alternative grains would provide a nutritious cost effective alternative.
The second concern revolves around the potential for cross contact with gluten. While the potential for contact of gluten in oats has been researched over the year, little attention has been given to the same risk in other grains. The study by Thompson and colleagues13 revealed the reality of the concerns of gluten exposure of these ancient grains. In the study it was found that some grains not labelled gluten-free contained as much as 300ppm gluten, almost 60 times the acceptable level.13 The authors concluded that only certified gluten-free grains should be included in the GFD. Thompson has continued to test and report on the gluten content of grains and processed gluten-free products on the site www.glutenfreewatchdog.com.
conclUsion anD Practice Points Adding alternative grains to the gluten-free diet not only provides a nutritional advantage for your patients, but potentially is a cost effective one as well. These grains may be new and unfamiliar to your patients. Providing a weekly menu, cooking instructions, traditional recipes familiar to your clients, with the addition of the grains, may improve acceptance. However, care must be taken to add the grains slowly and ensure that the grains be labelled gluten-free to avoid any risk of cross contact with gluten.
While the addition of these powerhouse grains appears to be an ideal solution, in practice some caution must be advised. As the ancient grains offer good sources of fibre, a large amount of grains (and thus fibre) suddenly added to the typical GFD could cause some gastrointestinal distress mimicking gluten exposure. It is generally recommended to add the ancient grains slowly and over time, starting with a quarter to a half portion per day, then slowly increasing over time. In addition to the slow introduction of these grains, to monitor for tolerance and allow the gastrointestinal system to adjust, care must be given to recommend adequate intake of fluids.
suzanne Ford, Dietitian in metabolic Diseases
Pat Portnoi, Dietitian in metabolic Diseases
Dr anita macDonald, consultant Dietitian in imD
Suzanne Ford works as a metabolic Dietitian for Adults at North Bristol NHS Trust. She has been a Dietitian for 21 years, with six of them working in metabolic Disease.
Pat Portnoi has been Dietitian for the Galactosaemia Support Group UK for 18 years and has worked in metabolic Disease for over 35 years.
Professor Anita macDonald is consultant Dietitian at Birmingham children’s Hospital and has almost 40 years’ experience in Paediatric and ImD dietetics.
GAlAcToSAemIA: SUITABle cHeeSe FoR PeoPle oN A low GAlAcToSe DIeT
Galactosaemia is an inherited metabolic disorder of carbohydrate metabolism which affects one in 44,000 people in the Uk population, although it is more common in the Irish and Irish traveller populations. It is one of the more common metabolic disorders managed by dietitians.
Ideally, all patients should be under a specialist inherited metabolic care team, but some patients are treated in both Paediatric and Adult general district hospitals.
Classical galactosaemia is due to the deficiency of galactose-1-phosphate uridyl transferase (GALT). Early diagnosis and treatment is vital in order to prevent liver disease and sepsis, although longterm complications of the disease do occur. In the UK, there is no screening for galactosaemia so infants are diagnosed clinically and this usually happens in the first few days of life following the development of symptoms.
Much is still unknown about this condition and its long-term outcomes. Some early treated patients develop learning difficulties. These are often mild, but can occasionally be more serious with other neurological impairments. Reduced bone density and ovarian dysfunction in females are commonly observed in older patients. Cataracts occur in untreated patients or patient non adherent to diet therapy.
management A galactose restricted diet is the only treatment for galactosaemia. The main source of galactose is from the lactose in milk, so the diet is primarily a lactosefree, galactose restricted diet. Fruit and vegetables provide a very small amount of galactose and contribute very little to overall galactose intake, so it is not recommended that they are restricted in a diet for galactosaemia. New international guidelines on all aspects of management should be available in 2016.
Although milk-containing products are not allowed in galactosaemia, recent research has shown that certain types of mature hard cheese are low in galactose and lactose and so are suitable in this diet.
whY shoUlD cheese Be alloweD in galactosaemia? It is important that people with galactosaemia include permitted cheeses in their diet, not only for dietary freedom and enjoyment of the product, but as a source of calcium. Calcium intakes of people with galactosaemia are commonly sub-optimal despite the use of fortified products, and low intake may contribute to poor bone density. Between 2000 and 2015, the Galactosaemia Support Group has sponsored the analysis of 181 samples of cheese for lactose or for lactose and galactose, using 12 different analyses, and now has considerable knowledge about which cheese can be allowed.
Many countries now allow specific mature cheese, although these may vary from country to country.
how is cheese maDe? Pasteurised milk has specific starter culture bacteria added to it, so fermentation starts; then rennet is added to the ferment which causes a separation of curds from whey. The whey is a liquid which drains off and this component of the fermented milk is the part highest in lactose. Consequently, when the whey is removed, much lactose is removed with it.
When Cheddar cheese is made, further manipulation of the curds is done by salting and then ‘cheddaring’ the curds (this means cutting it into cubes and turning it constantly to dry out the cheese and encourage further whey to drain off). Traditionally, Cheddar cheese is formed into truckles (cylinders) for maturing (preferably in a cave near the Cheddar gorge).
Other cheeses such as Emmental, Gruyere and Parmesan are washed in a salt bath and this may encourage further drying out and loss of lactose.
how is lactose (anD thereFore galactose) lost in cheese maKing? Lactose is lost in two ways: 1) Lactose is metabolised by the bacteria. Some cheese have very specific bacteria added, such as propionicbacter shermani in emmental cheese, which along with other strains of bacteria, make the holes. Emmental cheese is particularly
table 1: cheese allowed in a low galactose diet
CHEESE DESCRIPTION
suitable in galactosaemia as the lactose is thought to be completely used by the bacteria. 2) Lactose is leached away from the cheese as it dries and matures, as the whey component runs off. Generally an older, more mature cheese will have less lactose as it has dried out. A soft cheese will have more moisture in it, and so more whey, and therefore will not be suitable.
what are the PermitteD lactose anD galactose leVels? Based on many years’ experience of cheese analysis in the UK, the Galactosaemia Support Group MAP allows the use of specific cheese in galactosaemia that consistently show levels of <10mg/100g of galactose and lactose. Cheese should be analysed five times or more to allow for individual variation.
what cheeses haVe Been analYseD? Many different cheese have been analysed and Table 1 lists suitable and unsuitable cheese. Various milk-free cheese substitutes made predominantly for the vegan/allergy market can also be used and are free of galactose. The eating, cooking and nutritional qualities of a cheese substitute is different to a standard cheese, but they can add extra variety in the diet.
PRODUCT
emmental cheese grated, sliced, block hard swiss cheese with holes
gruyere cheese Block hard swiss cheese
comte Block hard French mountain cheese
Jarlsberg cheese Block hard norwegian cheese with holes
italian Parmesan cheese grana Padano, block or grated hard italian cheese
emmi Fondue mix swiss cheese fondue mix
specific cheddar cheese(UK) Lye Cross extra mature and mature Valley Spire Parkham Tesco Country Farmhouse extra mature Sainsbury`s TTD West country extra mature Dromona vintage cheddar (N Ireland) Rathdaragh vintage cheddar (N Ireland) mainly extra mature or vintage cheddar block, traditionally made and packed
Vegetarian/vegan cheese alternatives
Bute island sheese - Various soy cheese-hard, cream, slices
cheezly Various soy cheese - hard, cream, slices
Free and easy
mozzarisella cheese flavour sauce mix
creamy risella.- mozarella rice based cream
table 1: cheese allowed in a low galactose diet (continued)
CHEESE DESCRIPTION Vegetarian/vegan cheese alternatives (continued)
no muh cheese squares, melty cheese, herb cheese and cheese with walnuts.
Parmazano
Pure grated replacement Parmesan.
thick cheese slices Pure soft and creamy spread
tofutti
Vegourmet
Violife
Follow your heart Various soy cheese - hard, cream, slices
montanaro smoked vegan cheese slices Jeezini celtic cheddar style vegan cheese block Jeezy natural vegan cream cheese Bianco vegan cheese - similar to mozzarella
creamy original - cream cheese type cheddar cheese type block Parmesan
Various cheese slices- mozzarella, herb, american cream cheese
PRODUCT
whY is some cheDDar alloweD BUt not others? Suitable Cheddar is made using traditional methods, the right bacteria and has been matured for a long period. Traditional manufacture allows the cheese to dry naturally. Large scale factory processes pack the cheese in plastic at an earlier stage and then lactose cannot be lost.
Suitable cheese will often be labelled as extra mature or vintage Cheddar cheese and may be 12 months or 15 months old or more. Seven Cheddars are currently allowed. Lye Cross Farm cheese is still suitable, but is no longer available at Aldi.
whY the PDo seal is no longer a gUiDe to sUitaBilitY The seal is a geographical seal, which means that the product is made in a certain area of the country. In the past, this seal was used by the GSG society to help identify suitable low lactose Cheddar cheese made in one area in Britain. However, this has caused confusion as this seal is also used for other cheese that contains lactose, e.g. Stilton has the seal as it is made near Stilton in Leicestershire, but it contains lactose. We no longer recommend using this seal to identify if a product is low in lactose and galactose.
BabyBel - original and emmental cheddar cheeses - all except for the seven listed as permitted cheshire cottage cheese Dairylea cheese spread edam gouda lacto-free cheese Processed cheese soft cheese stilton, wensleydale american Parmesan manchego cheese - recently analysed
lacto-Free cheese - is it sUitaBle? In any type of ‘lacto-free’ cheese, about half of the lactose is removed by filtration and the other half is enzyme treated to break down the lactose into galactose and glucose. These products contain galactose and are unsuitable for galactosaemia.
For further patient information please visit the Galactosaemia Support Group (GSG) Website: www.galactosaemia.org/. The work on cheese would not have been possible without the support of the GSG and we are grateful for all their support.
Information sources 1 Berry G and Walter J: Chapter Disorders of Galactose Metabolism in Inborn Metabolic Diseases pub Springer Medizin Germany (2012) ISBN: 978-3642-43420 2 Jumbo-Lucioni PP et al. Diversity of approaches to classic galactosaemia around the world: a comparison of diagnosis, intervention and outcomes; J
Inherit Metab (2012) 1037-1049 3 Bosch A; Classic galactosaemia: dietary dilemmas; J Inherit Metab Dis (2011) 34:257-260 4 S Adam et al. How strict is galactose restriction in adults with galactosaemia? International practice; Mol. Genet.Metab. 115 (1) (2015), 23-26 5 Portnoi P and A MacDonald. Determination of the lactose and galactose content of cheese for use in the galactosaemia diet (2009) JHN Diet 22.2009 p 400-408 6 Van Calcar et al. A re-evaluation of life-long severe galactose restriction for the nutrition management of classic galactosaemia; Mol. Genet.Metab. 112 (2014) 191-197 7 Rutherford PJ, Davidson DC and Matthai SM. Dietary calcium in galactosaemia (2002). J Hum Nutr Dietet, 15, p 39-42 8 Portnoi P, MacDonald A. Chapter: Lactose and galactose content of cheese. Handbook of cheese in health: production, nutrition and medical sciences; Wageningen Academic Publishers. 10/2013: pages 496-513; ISBN: 978-90-8686-211-5 9 Portnoi PA, MacDonald A. The lactose content of Mini Babybel and suitability for galactosaemia. J Hum Nutr Diet. (2011) Dec; 24: 620-1 10 Portnoi PA, MacDonald A. The lactose and galactose content of cheese suitable for galactosaemia: new analysis (2105)JIMD Reports 11 Metabolic pathway from ‘Galactosaemia - What’s that?’ leaflet (2015), printed by the Galactosaemia Support Group
review by Ursula arens writer; nutrition & Dietetics
Ursula has spent most of her career in industry as a company nutritionist for a food retailer and a pharmaceutical company. She was also a nutrition scientist at the British Nutrition Foundation for seven years. Ursula guides the NHD features agenda as well as contributing features and reviews
DeATH BY cARBS
aUthor: Paige nicK PUBlisher: BooKstorm aPril 2016 isBn: 978-0620674355 Price: Paperback £11.21
Tim Noakes is a not-shy professor of exercise physiology from Cape Town in South Africa and has lots to say on diet. More on this later. However, it is amazing that he has just become the main murder victim in a crime fiction book, despite being very much alive. It is some tribute to him that there are enough South African readers of the completely made-up plot of his murder, to put the book into the Top 10 sales list for March 2016. The book Death by Carbs bizarrely describes the fictionalised characters involved and affected by the unreal death of a real nutritionist.
The story starts with the discovery of the body. The overweight policeman hands the corpse to the ambulance men, but they are car-jacked, and two gangsters have to handle the disposal of the valuable dead person. So who killed Professor Noakes?
There is a spaghetti plate of weaves and clues on who-dunnit. Was it the ex-publisher who had rejected the low carb cookbook that launched the ‘banting’ craze in South Africa? Was it Tim Noakes’ wife, who seems to have disappeared? Was it the CEO of a snack company that was facing decline because of public carb-rejection? Was it the jealous co-author of the cookbook, a secret-pasta-eating chef, who was facing poor attendance and financial ruin at his low carb restaurant? Or was it any of thousands of crazy trolling TN fans; there is particular suspicion of a woman
We have four signed copies of Death by Carbs by Paige Nick to give away. For your chance to win, click here . . .
who is quick to push meal plans on the internet, which she claims to have been TN endorsed.
Actually, this is a who-cares whodunnit novel and the revelation of the culprit and surprise final twist is the least interesting part of the book. Of greater interest are the personalities and plots around diet promotion, which Death by Carbs offers very interesting insights into.
Many of the fictional characters in the book make their money from the diet industry, and it is revealing that there is not even the slightest hint of dietetic input into the (fictional) discussions. But there are rich descriptions of Facebook and other social media discussions of weight loss. The creation of multiple online personas to promote diets and the planting of half-truths and muddle to push products, was very insightful, illustrating the way that bubbles of opinion can develop without any science anchor.
The author, Paige Nick, has researched the weight loss discussions that occur online in depth and reflects these back in her fictional writings - including by one character called Nicky
Paige, which is a clever joke. The book even has a cover endorsement by Professor Tim Noakes: “I was breathless right until the end,” which is a comment best appreciated once you have read the book.
the real tim noaKes So, who is Tim Noakes and why is he such a rich source of fictional delight? He is a doctor (with three doctorates) and has spent his career researching metabolic homeostasis mechanisms during extreme exercise, or activities in extreme conditions, such as super-cold environments. He wrote a very successful, thousand-page book for runners entitled Lore of Running, but from that point, he has made very sharp U-turns in his opinions, which are now almost opposite to those of most of his colleagues. He thinks that athletes (and everyone) should have diets based on protein and fats, and that intakes of all carbohydrates should be tightly controlled. In recognition that William Banting (died 1878) was the original advocate of this style of eating, Tim Noakes labels the dietary rules he promotes as ‘banting’.
His book entitled Waterlogged - the Serious Problem of Overhydration in Endurance Sport described his research into exercise-associated hyponatraemia and strongly challenged the promotions of the sports drinks industry. His next book was a popular diet book describing recipes for Low Carb High Fat (LCHF) eating, entitled Real Meal Revolution. The book has been a crazy success in South Africa with sales at 250 thousand, and was followed by a book launched in 2015 describing LCHF eating for children: Raising Superheroes.
The battle between high fat or high carb strategies to optimize sports performance (in exercisers) or health (in overweight public) are not unique to academics in South Africa, but nowhere else has this debate spilled over into popular fictional literature, or popular judicial reporting.
The prompt for Prof Noakes’ most recent confrontations is due to a twitter spat. A breastfeeding woman tweeted him on whether the LCHF diet was suitable for her and he replied that it was, and to, “wean baby onto LCHF”. This was a final straw for Claire JulsingStrydom, the President of the Association for Dietetics in South Africa, who reported him to the Health Professions Council of South Africa on the basis of unprofessional conduct. The legal case balances the full body of nutrition science research against a tiny tweet and while hearings took place in February 2016, final sessions are due in October 2016. No doubt lawyers of both sides are spending much highly charged-for time, reviewing nutrition science journals.
This feature is about a fictional book, rather than any review of nutrition science debates prompted by Professor Tim Noakes. Perhaps the observations that the (mostly black) runners fuelled on fried chicken often won races over the (mostly white) runners fuelling on glucose drinks, started Tim Noakes’ contrarian views. However, the involvement of professional conduct hearings broadens the issues into those of professional free speech. And what better way to handle such delicate topics, than in a book of fiction.
Death by Carbs is a quick-flick book that cannot really be recommended to any book club. However, it is an interesting and fun tackle of crazy diet-talking characters, and reveals many of the peripheral forces that have so much sway on public opinion around weight loss. For this reason (only), it is an interesting read for dietitians.
nicola crawford taylor - coeliac UK membership helpline Dietitian
A coelIAc UK memBeRSHIP HelPlINe DIeTITIAN
My working week starts on a Wednesday and always with breakfast, usually porridge or a bowl of yoghurt and homemade granola and the essential cup of tea. I then drop my two young children at nursery before heading to work for the day.
I work part-time, three days a week, so developed during my time here and it the first part of my day is spent catching is something that the Helpline team are up with colleagues and checking and committed to, it is only through actively responding to emails to ensure that I’m listening to someone that we are best fully up to date with current events and able to support them. procedures. 11:30-12:30 and it is time for our Today, my first task is to check final bi-monthly social media chat. This is proofs of two articles for our summer an hour-long chat held every other issue of Crossed Grain magazine, which month where the dietitians take over is sent out to all Members three times a the handling of Coeliac UK’s social year. The articles cover travel insurance, media channels and give people the soya lecithin and the new Government opportunity to contact us directly. It guidelines on alcohol, is a busy hour, with lots of enquiries as well as a number about a variety of topics, including iron of recipes all with a deficiency anaemia and good sources Mediterranean flavour. of iron that are suitable for a glutenA large proportion free diet, ongoing symptoms despite of my day is spent following a gluten-free diet for almost answering enquiries via a year and gluten-free options when Coeliac Awareness the Coeliac UK Helpline, email or social media. travelling to South-East Asia. I love the fast-paced nature of this and it is an Week 2016 Enquiries are varied area in which we hope to develop our 9th-15th May and no two days are services in the future. the same. Today on the This morning, I have also handled Helpline, I have been a number of email enquiries regarding asked about the link between coeliac diagnosis, the conditions that are disease and Type 1 diabetes; how much associated with coeliac disease, liver gluten needs to be eaten prior to testing function tests, if there is a link between for coeliac disease; if maize starch is coeliac disease and tooth enamel defects gluten-free; can rye bread be eaten; what and a low residue diet. foods are available on prescription and 13.30 and it’s time for lunch, a puy whether fatigue is a symptom of coeliac lentil and feta salad, followed by a quick disease. Not having face-to-face contact walk around the block to get some fresh with people means having to build a air before I begin the second part of my rapport over the telephone fairly quickly day. First up is our team meeting. The to ensure that they feel comfortable Helpline team consists of seven staff, talking about issues and symptoms that two dietitians, three food and drink are sometimes quite personal. Active advisors and two membership advisors, listening is a skill that I have really and between us we handle an average
of 2,500 enquiries a month. Operating Monday to Friday from 9am to 5pm, the Helpline is one of the key services offered by Coeliac UK and provides support to a wide range of individuals, including people who are newly diagnosed with coeliac disease, those seeking a diagnosis, healthcare professionals and established Members who have been diagnosed for many years. It is often the first point of contact that people have with the Charity and gives callers invaluable advice on gluten-free living from recipe ideas to information on labelling. We meet on a regular basis, away from the phones, to ensure that we have dedicated time to discuss any issues and catch up on any organisational news and events. Today’s meeting is focused on identifying a better way in which we can monitor and record the enquiries we receive via the Helpline to enable us to improve the services and resources we offer.
The remainder of the afternoon, interspersed with answering Helpline enquiries, is spent updating the information on the website about following a gluten-free diet when you are on a budget. With over a quarter of Clinical Commissioning Groups in England now restricting, or withdrawing, access to gluten-free staple foods for people with coeliac disease, the aim is to provide more support for those who are struggling to follow a gluten-free diet now that their prescriptions have been withdrawn, and to provide some useful tips for those who may be on a tight budget.
As you can see, the day is varied, which I love. I never know what the next enquiry will be, so whilst I specialise in coeliac disease and the gluten-free diet, continuing professional development is so important too. I really enjoy speaking to a range of people, whatever stage of their journey, knowing that the help and support we provide can really make a difference.
Did you know? Coeliac UK offers free Membership to all HCPs. Benefits include a copy of our Food and Drink Directory which lists over 18,000 foods that are suitable for a gluten-free diet (a useful tool to show patients when you see them in clinic); access to the latest research findings into coeliac disease and the glutenfree diet; our quarterly professional email newsletter and an online forum where you can share best practice and information with other HCP Members. If you are not yet a Member, visit our website www.coeliac.org.uk/join-us/ hcp/ or contact the Helpline on 0333 332 2033 to join today.
Coeliac UK is the oldest and largest coeliac disease charity in the world and we have been working for people with coeliac disease and dermatitis herpetiformis since 1968. We have offices in England, Scotland and Wales. Together, as the biggest UK community for coeliac disease, we will improve healthcare and make a glutenfree choice an easy choice.
Don’t forget: Awareness Week 2016 - Is it coeliac disease? From 9th to 15th May.
