COELIAC DISEASE - Mediaplanetdoc.mediaplanet.com/all_projects/559.pdf · getting much better p. 8...

For 1 in 100* people with symptoms of coeliac disease, the starting point is getting diagnosed

*Coeliac UK 2006

COELIAC DISEASE

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT COELIAC DISEASE, DISTRIBUTED WITHIN THE TIMES

31 JANUARY 2007 A SPECIAL REPORT ABOUT GLUTEN INTOLERANCE

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT COELIAC DISEASE, DISTRIBUTED IN THE TIMES2

CONTENTS

The mystery of gluten and the immune system p. 4

Life begins at 40 p. 4

What is coeliac disease p. 5

From nomads to farmers p.7

Blood tests offer welcome first stage p. 7

GP understanding of coeliac is getting much better p. 8

Could a pill really cure coeliac p.10

Has this Professor unlocked the secrets of coeliac p.10

Coeliacs can make themselves lactose intolerance p.11

Information is key to a gluten free diet p.12

Helping babies and children with coeliac disease live full lives p.13

Coeliac diagnosis can help women start families p.14

Getting a better picture of coeliac symptoms p.15

Momentum is building for coeliac disease awareness p.15

COELIAC DISEASE A TITLE FROM MEDIAPLANET

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Education key to tackling coeliac diseaseWelcome to this specialinterest supplement oncoeliac disease, the condi-tion caused when gluten(found in wheat, barley andrye) causes the body’simmune system to attackthe small intestine, makingthe person feel ill andheightening their risk ofdeveloping further compli-cations, such as bowel can-cer and osteoporosis,through the knock on effectof malabsorption of vitalvitamins and minerals.

Around 1% of the popu-lation are estimated to suf-fer from coeliac disease,even though a large propor-tion of these people are esti-mated to be currently undi-agnosed or misdiagnosed.

The fundamental prob-lem with coeliac disease isthat it seems so similar tomany other digestive con-ditions that it is all too easy for a person to not seek medical help,because they simply suspect they are eating something that upsets themthey can take out of their diet themselves, or to seek medical advice andthen be misdiagnosed.

Indeed a significant proportion (one estimate suggests at least 5%) ofpeople diagnosed with Irritable Bowel Syndrome (IBS) are actually coeli-ac and because the symptoms are so similar and there is no test for IBS,an IBS diagnosis cannot be proved wrong. In fact, anecdotal evidencefrom gastroenterologists suggests that around one in ten or one in five ofthe people that attend their coeliac clinics were originally wrongly diag-nosed with IBS.

However, with modern blood tests GPs, and even people at home, cannow take the first step towards discovering if they may be coeliac (a sus-picion that can only be truly confirmed by talking to your GP and beingreferred to a gastroenterologist).

Labelling improving There is some good news for coeliacs with diet. Modern food labelling ismaking it easier than before to inspect the contents of processed food,partly because of raised awareness of coeliac but arguably mostlybecause of the more widespread concern of food allergies.

There is a very important point to make here. Coeliac is not an allergyto wheat, barley and rye, it is an autoimmune disease. Whilst allergiescan be very serious, and can even cause death, an autoimmune disease

has far wider reachingimplications because, forsome reason, the immunesystem of a coeliac reactsto gluten by attacking thegut lining.

This leads to it becom-ing so inflamed that it notonly causes the person tofeel ill, it can prevent min-erals and vitamins beingabsorbed by the digestivetract, leading to, amongother effects, calcium andiron deficiencies whichlead on to osteoporosisand anaemia. There is alsoa small increased risk ofdeveloping bowel cancertoo, for untreated coeliacs.

It is a similar reactionthat type 1 diabetes ormultiple sclerosis sufferersexperience where theimmune system turns onitself and damages its owntissue.

Fortunately, for coeliacs, although doctors are in the dark as to whattriggers other autoimmune diseases, it is know that gluten is the triggerfor coeliac disease.

Hence, although the symptoms can be very painful to live with –cramps, gas, diarrhoea, bloating and lethargy, among others – there islight at the end of the tunnel. There is a cure for coeliac disease and it issimply diet. Avoid gluten and most doctors agree the gut lining that hasbeen inflamed by the condition will start to repair itself within a fewweeks and within a few months most people should feel fully recovered.Sometimes to kick-start the recovery process iron and calcium supple-ments may be prescribed at first, to make up for past malabsorption, butwithin a few months most people will be back to full health with no needfor supplements, so long as they keep to a gluten free diet.

The most important points that this supplement will aim to make is thatcoeliac is a serious condition and those suffering with the symptomsshould seek medical advice and not change their diet themselves. It is onlyby visiting a doctor and then being referred to a gastroenterologist whilston a diet that contains gluten that coeliac disease can be diagnosed.

Diagnosis is so important because if a coeliac remains undiagnosed theywill not only continue to feel unwell they will be causing long term dam-age to their health. So, however vague the symptoms the best advice is tonot alter your own diet but to book an appointment with a GP, only thencan this autoimmune disease, coeliac, be confirmed or crossed off the list.

Coeliac disease in facts and figuresIt is not until one sees the facts and figuresthat sum up the effect of coeliac disease (CD)that one can get an idea of its impact on peo-ple’s lives and, indeed, the country.

■ Coeliac disease has a true prevalence of 1%of the UK population ■ Amongst first degree relatives of a suffererthe prevalence is 10% and in second degreerelatives it is 2% ■ Approximately 125,000 people have beendiagnosed with coeliac disease in the UK.Estimates suggest that 80% of sufferers(500,000) are undiagnosed■ Coeliac UK members state that waiting

times between their initial visit to the doctorand the correct diagnosis can be anything upto ten years ■ The Royal College of Physicians has rec-ommended that there should be at least oneConsultant Gastroenterologist per 40,000people due to the rising incidence of gas-trointestinal disease. This would represent adoubling or trebling of existing gastroen-terological numbers ■ More women are diagnosed with coeliacdisease than men■ By switching to a gluten-free diet the gutwill start to heal but this can take anythingfrom 6 months up to 2 years■ If you have a high level of sensitivity even

living next to an operational flour mill canbring on symptoms■ Studies have shown that more than 75% ofuntreated adults with CD suffer fromosteopenia or osteoporosis ■ Type 1 diabetes occurs in about 5% ofpatients with coeliac disease■ Approximately 5% of patients with coeliacdisease have thyroid disorders■ Deaths from diseases of the digestive systemhave increased by 25% in the last ten years■ 1/5 of all short term sickness is due to GIdisease costing the British economy £2.9bil-lion per year

IN A RECENT YOUGOV POLL FOR COELIACUK OF 1,500 MEDICALLY DIAGNOSEDCASES OF COELIAC DISEASE:

■ 30% of respondents had visited the GP seven or moretimes before being offered a test for coeliac disease■ 65% of respondents were incorrectly diagnosed with irritable bowel syndrome (IBS) before being correctly diagnosed with coeliac disease■ 68% of women and 52% of men said that prior to diagnosis their condition had left them too tired/ill to participate in sports and exercise■ 46% of respondents who were initially wrongly diagnosed believe their job/career suffered as a result while 59% believe it had a detrimental affect on their social life■ 21% of respondents felt their sex life had sufferedprior to diagnosis■ Only 57% were referred to a dietician for advice andsupport on how to correctly implement a gluten free diet

Now relaunched to reflect advances madein the category, Sainsbury’s Freeform rangecomprises over 60 delicious products deliveringa solution for every meal occasion.

Production

To ensure strict quality control Sainsbury hasa code of practice for its’ Freefrom rangewhich stipulates where raw materials mustcome from, how ingredients and finishedproducts should be segregated, preparedand tested.

When developing the Freefrom rangeSainsbury’s has done what anybody in theirhome kitchen would do and found a recipethat works without the potential allergeningredient.

This has obviously taken some experi-mentation and Sainsbury is confident thatits relaunched Freefrom range does notcompromise on quality or taste. Indeed itis now so proud of its gluten free bread andpasta it claims they are the best tasting onthe market.

When products are ready, they are putthrough a string of tests for traces of glutenand milk before they can be labelled asFreefrom.

The labelling system is very simple. Productsare listed as wheat and gluten free or dairyfree.Where possible, the supermarket aimsfor both.

Sainsbury’s is in constant liaison with its teamof suppliers to ensure product consistency.Suppliers of the Sainsbury’s Freefrom rangeare only approved if they can demonstratea proven expertise in producing food forpeople on medically prescribed diets orwith food allergies.

Suppliers are constantly checked to ensurethey meet the high standards required tobe a supplier of Freefrom products.

The customer

With the Freefrom range Sainsbury’s isproud to say it can reach out to a minority ofthe population who have food intolerancesand allergies and allow them to eat normalmeals with the whole family, not to men-tion, of course, the occasional treat.

Freefrom is a small but important part ofthe supermarket’s business and it is dedicatedto continuing to develop and improve therange because it allows so many people toenjoy food in the confidence that it meetstheir dietary and health requirements.

In addition to the Freefrom products,Sainsbury’s also stocks over 100 brandedlines for those who have food intolerancesand allergies, providing them with evenmore choice.

To provide up to date information to cus-tomers, the supermarket’s website containsinformation on dietary issues, includingguides which can be downloaded (thegluten free information is currently beingrewritten to ensure it is up to date).

Sainsbury also runs a care line (0800 636262),which customers can call with any query aboutthe supermarket’s products so people can havetheir minds put at rest.

Products

There are over 60 products in the Sainsbury’sFreefrom range all of which can be easilyidentified by their distinctive yellow colour.

The range includes products for everyeating occasion so those choosing a glutenor diary free diet need not miss out eatingenjoyment.The range includes stuffing mix,chicken nuggets, lasagne sheets, hot crossbuns and Easter eggs as well as a variety ofcakes and biscuits.

Sainsbury’s Freefrom range relaunchedSainsbury’s team of Product Technologists and Developers know just what it is like to be put on a

gluten or dairy free diet. Just four years ago when the supermarket was researching the needs of

customers whose health means they have to avoid certain food types, it built up a team of colleagues

who voluntarily kept to such diets. Plus, this team also started to hold regular focus groups

with colleagues who have food allergies.The result was an invaluable insight into the everyday

experiences of people that have to exclude food types from their diet.


The mystery of gluten and the immune system

Gluten is harmless to the vast majori-ty of people and is a protein found inwheat, rye and barley and, as such, isa regular part of any staple diet.

In fact, it is gluten that gives doughits characteristic elasticity and is whatmakes baked products, such as breadand bagels, chewy. When it is cooked itreleases gases which allow bread to rise.

Gluten is made up of two proteins,gliadin and glutenin, and makes up80% of the protein found in wheat.Although gluten is normally blamedfor coeliac disease, it is actually itsgliadin constituent which triggers theautoimmune reaction which causesthe disease.

Whilst the protein is not present inoats, many coeliacs will avoid thembecause the cereal is often processedin the same stores or with the sameequipment as wheat, rye or barley andcross contamination can occur.

The good news for coeliacs is thatthe body does not need gluten and soa gluten free diet does not deprive thebody in any way.

The bad news it that gluten is so

widely used in food that keeping to agluten free diet can be difficult, par-ticularly when eating away fromhome when a coeliac has not had thechance to inspect food labels or over-see how meals have been prepared.

Immune reactionThe reason why gluten triggers anautoimmune reaction when it comesin to contact with the small intestineis still not clear to medicalresearchers. What cannot be under-lined enough, however, is that coeliacdisease is not an allergy to gluten.Although allergies can have seriousside effects, an autoimmune responseis far more serious because it meansthe body starts to attack itself as theimmune system sends out antibodieswhich attack the gut lining, causing itbecome inflamed.

This reaction of the body turningon itself is common to all autoim-mune diseases. In the case of type 1diabetes, for example, the immunesystem attacks the beta cells in thepancreas which create insulin, ren-

dering the person incapable of break-ing down glucose in the blood stream.

In fact, there is a link betweencoeliac and diabetes which makesthose with one of the conditions morehighly predisposed than normal todeveloping the other, or having fami-ly members with the other condition.

“It’s the same gene block whichmakes people predisposed to coeliacand diabetes,” explains Paul Ciclitira,Professor of Gastroenterology at StThomas’ Hospital, London.

“So you do find there is a linkwhich people with coeliac and dia-betes need to be aware of.”

As one can imagine, the fact thatcoeliac disease only affects those thatare genetically predisposed to the dis-ease means it runs in families. Hencethe children of coeliacs are ten timesas likely as the general population tocontract the disease and so parentsneed to keep an eye on the health oftheir family should any member startto exhibit symptoms of gluten intol-erance.

Life begins at 40 Run forCoeliac UKCoeliac UK is appealing to peo-ple who have won a place inthe Flora London Marathon(April 22nd) to consider run-ning for the charity which hasbeen set up to help people withcoeliac and their families.

The charity already has ninerunners helping to raise moneywho can be sponsored atwww.justgiving.com/coeliacukbut is happy to help any addi-tional runners with independ-ent places in the race to join thefund raising team. Runnersraising money for the charitywill be given a fundraisingpack.

Fair Trade GFmuseliCoeliacs who want to eat mues-li and, for the first time, also beable to say they are supportingFair Trade and the organic foodmovement, will be interested inthe recent launch of ActiveMuseli, by food firm Alara.

The company is trying to tiethe launch of the product inwith Free Trade fortnight (Feb-ruary 26th to March 11th) whichit claims is the first gluten free,organic and Free Trade mueslito be sold in the UK.

For two years, Joey had lived withextreme fatigue, anaemia and excru-ciating stomach cramps. Visit aftervisit to her doctor drew no conclu-sions and Joey began to wonder ifsomething more sinister was behindher symptoms.

“I was exhausted all of the time andon some days I didn’t even have theenergy to walk my daughter toschool,” Joey explains.

“I eventually had to resign from myposition as a lecturer at Bradford Uni-versity and my husband David changedhis job so he could spend more time athome with the children. I was just too illto cope with ‘normal’ life.”

Wrong tests Joey was tested for ME, glandularfever and post viral infections andafter a six-month course of iron sup-plements to help her anaemia, Joeyquestioned why she still felt no better.“It was then that my doctor suggestedtesting me for coeliac disease,” shecontinued. “Anaemia, weightloss,fatigue, stomach cramps are all signsof coeliac disease but are not alwaysexperienced together making it diffi-

Like many women, turning 40 for Joey Moore was adefining moment in her life but, unlike most women,Joey’s new lease of life came from being diagnosed withcoeliac disease.

cult to pinpoint the cause.“When I got the positive result two

weeks later it was like a weight hadbeen lifted from my shoulders. It wastwo months before my 40th birthdayand I suddenly saw my whole lifeopening up again in front of me.Finally, I knew what was wrong andfinally, I knew there was something Icould do about it. My life was sud-denly my own again.”

Gluten freeAfter a biopsy to confirm the diagno-sis and under instruction from herdoctor, Joey removed gluten from herdiet and she regained her energy, thestomach cramps stopped and, whilestill taking calcium supplements tohelp reduce the increased risk ofosteoporosis from years of notabsorbing nutrients from her food,she has returned to full health.

“I enjoy a full and active life nowand have even started my own busi-ness making gluten-free and wheat-free cakes and savouries,” Joeyreveals.

“Looking back, I worried about myhealth for two years because nobody

recognised the classic symptoms ofcoeliac disease. A test I could havetaken at home would have given mesomething solid to go back to mydoctor with and I could have got thediagnosis process underway so muchquicker. As it is, my body suffered anadditional two years of damage fromits reaction to the gluten I was unwit-tingly eating.”

Joey has now tested her two chil-dren with the Biocard Celiac Test tosave them running the risk of suffer-

ing from the condition undiagnosed.“I know coeliac disease is heredi-

tary so I wanted to screen my childrenjust in case they are reacting to glutenand we haven’t detected it yet. Lucki-ly the tests proved negative whichgives me the reassurance that theycan continue eating foods containinggluten, at least for now.”

“The problem is modernprocessed food oftencontains gluten as a

thickening agent whichbulks up produce“

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT COELIAC DISEASE, DISTRIBUTED IN THE TIMES 5

What is coeliac diseaseand how is it cured?Coeliac is a disease caused by the body having an adverse reaction to gluten, which isfound in wheat, rye and barley.It is caused by an autoimmune response triggered by the small intestine coming in tocontact with gliadin, which is one of the two proteins which make up gluten. The rejec-tion of the protein causes the body’s immune system to produce antibodies to fight off,what it considers to be, an invader.

The result is the gut lining becomesinflamed and flattened. Normally thesmall intestine’s lining features multi-ple finger-like protrusions called villi.These help the gut take in nutrientsand vitamins from food passingthrough the small intestine. However,when the autoimmune reaction kicksin and the body effectively startsattacking its own gut lining, theresulting inflammation covers overthe villi and curtails their ability totake in goodness from food passingthrough the digestive tract.

In particular, the gut becomes lessadept at absorbing vitamins and min-erals, meaning coeliacs often sufferfrom calcium and iron deficiencywhich can make them more prone toosteoporosis and anaemia. Womentrying to start a family are also at aheightened risk of miscarriagebecause of malabsorption of folic acid.

Symptoms and diagnosisThe condition where the gut becomesinflamed and flattened is called villousatrophy and can only be detected by adoctor, typically a gastroenterologist,taking a biopsy of the gut lining forfurther examination in the laboratory.

Today most patients will have firstbeen given a blood test to confirm thesuspicion of coeliac disease beforeundertaking an endoscopy to confirmit. Modern blood tests are a welcomeaddition to a GP’s armoury because,although endoscopies are painless,swallowing an endoscope so a gas-troenterologist can examine the gutlining is something most patientswould prefer to do only when a suspi-cion of coeliac disease has first beenconfirmed with a blood test.

These blood tests are greatly help-ing to speed up the diagnosis processand are now available at a time whenGPs are far better informed aboutcoeliac disease and its effects and soare able to consider it more highlywhen considering a diagnosis.

The problem still remains, though,that the symptoms of coeliac diseaseare very vague and could cover awide range of conditions. Feelingtired and lethargic (possibly throughbeing anaemic), diarrhoea, abdominalpain and feeling bloated are signs ofcoeliac disease but they are also pos-sible symptoms of other conditions,particularly Irritable Bowel Syn-drome. Hence, it is not unusual for aproportion of people with coeliac dis-ease to be misdiagnosed, typicallywith IBS, and then continue to suffer

because the root cause of the problem,gluten, is not tackled.

The situation is becoming even lessclear for doctors who have beentrained to expect weight loss as aprime symptom of coeliac disease.Although this is still the case, particu-larly in the young, recent research(see page 15) suggests that the oppo-site is equally true because peoplesuffering the symptoms of coeliacmay well switch to eating snack foodsand treats, to avoid bread and pastawhich they have noticed affect them,and so they can actually take in morecalories and put on weight.

A very sure sign that somebody ishaving a reaction to gluten, though, isa skin rash known as dermatitis her-petiformis (DH) which appears as redpatches, often with blisters, mostcommonly on the knees, elbows andbuttocks. The trouble is, although it isa good indicator for coeliac disease, itis rare, affectingly only one in tenthousand people.

What can be done?If talk of inflamed guts and vitaminand mineral deficiencies sounds a littledepressing, there is a silver lining forthose suffering from coeliac disease.

It is the only autoimmune diseasefor which medical science has foundthe trigger – eating gluten. Hence,although medical professionals donot know why the body reacts togluten, they do at least know that it isthe trigger for the condition.

This means there is a very simplecure – a life long diet which containsno gluten.

Whilst the prescriptive diet maysound simple enough, the problem ismodern processed food often containsgluten as a thickening agent whichbulks up produce.

Hence coeliacs start off with arather obvious list of food they knowthey should not eat – topped by bread,cakes, pasta and breakfast cereals –but they also have to become adept atlooking at food labels to see if a prod-

uct not made from wheat, barley orrye still has had gluten added.

GF improvingThere is good news, though, for coeli-acs doing their weekly shop. Not onlyhave modern food labels been adapt-ed to inform the public exactly whateach packet of food contains butmany food producers have realisedthere is a market in developing glutenfree ranges and many supermarketswill have a section devoted to the spe-cialist products.

Things are even improving atrestaurants where coeliacs havealways, quite rightly, felt very nerv-ous about eating. Even though theyknow what foods to avoid, there is noway of them knowing whether glutenhas been used in the raw materials orif there has been cross contaminationwith other food. However, an increas-ing number of restaurants are nowincluding gluten free ranges whichare clearly labelled on the menu.

The good news for coeliacs is thathumans do not need gluten and so agluten free diet does not deprive thebody in any way. In fact, to the con-trary, for a coeliac the resulting heal-ing of inflammation to the smallintestine brought about by a glutenfree diet will allow them to absorbvitamins and minerals from their foodfar more effectively.

Hence, once medically diagnosedand prescribed a gluten free diet, aperson with coeliac will start to feelmuch better within just a matter ofweeks or, at most, a couple or threemonths.

TESTING TIMES

The most important thing anybody needs to know about coeliac is that ifthey feel they are suffering the symptoms of the disease they should notonly talk to their GP, they need to carry on eating normally.

Diagnosis can be made more difficult if somebody prescribes themselvesa gluten free diet because their body will then not produce the antibodiesnecessary for a blood test to work.

If a person stops eating gluten they can feel better and then grow inconfidence and start adding gluten back in to their diet and then start suf-fering the symptoms coeliac all over again.

So, the advice from doctors and gastroenterologists is the only way tofind out if you are coeliac is to both seek medical advice and not alter yourdiet.

Could a ‘leaky gut’ be behind coeliac disease?Autoimmunity is the catch-all description for conditions in which one’s immunesystem attacks the body. According to traditional thinking, two things must occurfor autoimmune diseases, which include conditions as diverse as multiple sclerosis,scleroderma, and type 1 diabetes, to develop.

The first necessary precondition is that patients are bornwith the genetic predisposition to develop immunity toself. Secondly, during a period in their lives, they mustalso have been exposed to an environmental antigen trig-ger that sets off a never-ending cycle of autoimmunity,driven by antigen mimicry. Recent evidence, however,supports the existence of a third leg of autoimmunity-that the barrier function of various tissues of autoimmunepatients is impaired, especially the GI tract. This state ofimpaired barrier function involves the increased paracel-lular permeability of the intestine, otherwise known as “aleaky gut.”

Barrier integrityThe founders of Alba Therabeutics Corp. believe theyhave identified the pathway and a key protein associatedwith paracellular permeability, as well as peptides thatcan up- or down-regulate barrier integrity. With that un-derstanding, Alba is developing therapeutics for coeliacdisease, type 1 diabetes and other autoimmune diseases,and is also harnessing the pathway as a vaccine adjuvantand drug delivery vehicle.

The paracellular space, or the space between cells, “usedto be thought of as the equivalent of grout between tiles,”explains Alba’s CEO and cofounder, Blake Paterson.Nothing was supposed to get through, but substancessometimes did, presumably because of barrier injury ordamage. Otherwise it was inert.

That was until the work of Alessio Fasano, Alba’s sec-ond co-founder, and his colleagues, who identified a sig-naling pathway that regulated a reversible physiologicand transient opening and closing of the tight junctionsof the paracellular space.

“The reality is that the paracellular space is a gate, nota wall or a fence,” Paterson says. And if material getsthrough that space — even if it is only 1-5% of what nor-mally travels through the cell — it could be associatedwith disease.

“What’s different about the paracellular space is thatwhat comes through has not been processed by the cell,”he points out. “It has not been subjected to lysosomal di-gestion, nor has it been packaged for presentation tomacrophages or lymphocytes.”

Indeed, Paterson asserts, if Alba is correct, tight junc-tions “could be the dark horse responsible for a host ofdisease states, from acute injury all the way to chronic in-flammatory or autoimmune states.”

If the inappropriate paracellular permeability of phys-iological barriers is a third precondition of autoimmunity,“it is no longer an issue that, once triggered, a patientwill inevitably suffer the ravages of autoimmunity.Rather,” he goes on, “there is the possibility of an inmatefactor serving as the driving force for the disease that canbe blocked.”

Zonulin uncoveredThe key molecule in the signaling pathway regulating theopening and closing of tight junctions is zonulin, whichFasano discovered first in bacteria (the cholera organismuses the prokaryotic equivalent of zonulin to help it in-vade the sub-mucosal space), then later in eukaryotic tis-sue, while at the University of Maryland. Fasano also

discovered small peptide agonists and antagonists ofzonulin, giving him the empirical means to regulate thepathway.

By the time Paterson encountered Fasano, the researcherhad begun to demonstrate the therapeutic utility of down-regulating intestinal permeability in coeliac disease.

Unlike other autoimmune conditions, the environmen-tal trigger (the second precondition of autoimmunity) incoeliac disease has been identified: it is the presence ofgluten in the diet. When gluten is removed, a significantpercentage of coeliac disease patients go into remission.Classic small bowel histopathology returns to normal, asdoes intestinal permeability, and serological markers forthe disease become negative.

Fasano has shown in ex vivo tissue taken from coeliacdisease patients that exposure to gluten triggers zonulinrelease, which parallels, in both time and magnitude, anincrease in flux across the tight junctions in the intestine,which he could then block with the zonulin peptide an-tagonist. Conversely, giving the zonulin peptide agonistincreases the flux across the junction. Fasano has alsoshown in animal models that by opening the tight junc-tions with the agonist, that it could be used as vaccineadjuvant and as a delivery vehicle when co-administeredwith a drug.

Start up launchedPaterson first heard of zonulin and Fasano’s work in late2003, via a tech transfer posting on the Internet put outby the university, seeking licensees for drug delivery ap-plications of the work. Both men felt the bigger opportu-nity lay in therapeutic applications, however—finding away to block excessive permeability across various barri-ers, with sufficient time and magnitude to prevent the in-appropriate presentation of antigen and thereby achievedisease-modifying potential for autoimmune and inflam-matory conditions. With $2 million in seed capital raisedby Paterson from friends the state of Maryland, and in-dustry contacts in 2004 and early 2005, the duo formedAlba, which licensed therapeutic and drug delivery rightsto Fasano’s work, which by then included a 100-plus port-folio of issued patents and applications. Later, Alba addeddiagnostic rights to its IP.

The start-up decided to first test the zonulin peptideantagonist, AT-1001, in coeliac disease. That made sensefrom a safety perspective because in its normal restingstate, the small bowel (where the majority of food absorp-tion and the majority of immune surveillance occurs) isempty and sterile. “By the time food is digested andreaches the ileum, typically it has been chewed up and nolonger has immunogenic potential,” explains Paterson,who by then had also devised a coated formulation for thepeptide to allow it to pass through the stomach. AT-1001completed an initial Phase I trial in October 2005 andhas been awarded fast track status by the US Food andDrug Administration.

Alba is also exploring the use of AT-1001 as therapy inother indications including IBD, IBS, asthma and type 1diabetes. “It’s known that 40-60% of type 1 diabeticshave significant elevated intestinal permeability,” says Pa-terson. And as in coeliac disease the trigger for its onsetis thought to come through the gut, he points out, citing

adaptive immunology work in the last three to four yearsthat has tracked the locus of immunologic activity in type1 diabetes from the mesenteric lymph nodes to the pan-creas, where insulin-producing beta islet cells reside.Moreover, Alba had a leg up because Fasano had alreadyused the BB/wor rat model for type 1 diabetes to demon-strate the link between tight junction regulation and au-toimmunity.

In a set of controlled experiments in 2003 and 2004, hetested the effect of putting AT-1001 in BB/wor rats’drinking water. While 80-90% of the animals in theplacebo group developed disease (they fell into diabeticcoma), only 30% of those who got AT-1001 did. To showAT-1001’s ability to treat disease, Paterson and Fasanothen gave rats that had already developed autoimmunitythe zonulin peptide antagonist: half recovered, and halfof those got sick again when AT-1001 was subsequentlyremoved.

FundingTo fund its rapidly expanding clinical operations, thestart-up raised $30 million in a Series A round in August2005. It was able to raise that hefty amount, says Pater-son, based on its team, the network of resources the firmhad put together, and importantly, “what we’d been ableto do in a year with less than $2 million,” he says – ad-vancing two molecules (AT-1001 and the zonulin peptideagonist, AT-1002) that had been sitting on a shelf in anacademic environment. Alba is also reigniting discussionswith pharma companies on vaccine and drug delivery ap-plications for AT-1002, which it had put on the backburner while it developed its therapeutic strategy. Thefirm has concluded one research collaboration that yieldedpositive results using AT-1002 as a drug delivery vehicle,according to Paterson.

The recent publication of new literature on the impor-tance of tight junctions in inflammatory and immune dis-eases also puts Alba “in a sweet spot,” Paterson points out.“The zonulin receptor appears to be ubiquitous, and if itproves to have clinical significance, the sky’s the limit.Zonulin is the only pathway known to modulate the stateof assembly of tight junctions in a reversible, nondestruc-tive manner,” he claims.

Before co-founding Alba, Blake Paterson was COO ofIntegrity Pharmaceutical Corp., a urology women’s healthcompany. Prior to that, he was executive director of theoncology acute care and inflammation product groups atEli Lilly & Co. He also held positions at Parke-DavisPharmceutical Research, where he was responsible forclinical research and medical, safety and regulatory affairsfor the Latin America region. — MLR.


From nomads to farmersIf there is one question every coeliac would likeanswered but which science has no answer for, it is whya food stuff that is so widely available should cause onein one hundred people to feel ill?

When one looks around at supermar-ket shelves stacked with cakes, pastaand bread, it is only logical for acoeliac to question their apparent badluck. Coeliacs do have the good newsthat the disease is the only autoim-mune disease for which medicine hasfound the trigger but it is a mixedblessing considering doctors still haveno clear idea why.

We farmersA very good hunch is that when welook at the history of human beings,the appearance of cereal crops are arelatively new development.Although they were introduced to thediet 8,000 years ago, in terms of evo-lution it is a very recent event and sothere is a possibility that our bodieshave not yet adapted to the introduc-tion of wheat, barley and rye in to our

staple diet.“Before we settled and grew crops

we used to be roaming hunter gather-ers and so gluten would never havefeatured in our diet,” Professor AlessioFasano, from the University of Mary-land School of Medicine suggests.

“When we decided to stop beingnomadic and stay in a place and growcrops, we grew cereals and then obvi-ously gluten became part of our diet. Ithink, and it’s only a theory, that atthe time, 8,000 years ago, we musthave had a reaction to it and evolu-tion could have decided to concen-trate the gut on fighting gluten orfighting bacteria.

“It chose bacteria, and it’s just aswell it did because we could havebeen wiped out if we weren’t able tofight bacteria because we probablyhad meagre resources and so

wouldn’t have been able to share thefood in our gut with bacteria.”

Gluten unneeded It is not a proven theory but there is ashared logic throughout the medicalcommunity that our move away fromhunting on the move to become farm-ers is behind coeliac disease. Over thepast 8,000 years the vast majority ofthe population has managed to eatgluten with no ill side effects, yetthere is still one in one hundred peo-ple who still cannot tolerate the pro-tein.

The theory is supported by the sim-ple fact that our bodies could not careless whether they receive gluten ornot, GP Sohail Butt points out.

“It’s just not an important protein,”he points out.

“It’s something we don’t need andit’s something there are no side effectsfrom taking out of the diet. You don’tneed to take a gluten supplement, forexample, if you go on a gluten freediet, although you well have to initial-ly take calcium and iron supplements,to counter coeliac having caused mal-absorption of minerals and vitamins,because they are obviously somethingour body has always needed.”

Blood tests offer welcome first stageIn the past the only way ofinitially confirming a per-son may have coeliac wasan endoscopy in which apatient swallows a tube thedoctor can peer down toexamine their gut lining.

Although it is now claimed to be rela-tively painless, swallowing a tube into the stomach is not the kind of testthat would attract many volunteers.

However, there are now blood testsavailable which a doctor can use inthe first instance to ascertain whethera person is likely to be coeliac, so anendoscopy is only performed on aperson that has tested positive for thecondition.

The endoscopy is still normallyundertaken, as a secondary test,because whilst blood tests are accu-rate, there is still the chance theycould be wrong and so need corrobo-rating.

An endoscopy also allows a doctorto view the gut lining and check forsigns of the flattening effect of coeli-ac. Due to this not always beingapparent, the endoscope is equippedto allow small forceps to be passedthrough it so small biopsies of gut lin-ing can be examined up close in the

laboratory. Normally more than onebiopsy is taken in the procedurebecause not every part of the smallintestine will show signs of coeliac.

Most endoscopies are carried outwithout the need for more than aspray to temporarily deaden sensationin the back of the throat, althoughnervous patients and children can begiven a general anaesthetic.

Home kitThe blood tests now available to GPsare a valuable tool that allows doctorsto confirm a suspicion of coeliac dis-ease without having to put a patientthrough an unnecessary endoscopy.

The blood tests rely on the commonprinciple of detecting a disease bylooking out for the antibody the bodyproduces in the fight to ward off what

is sees an unfriendly invasion. For those who would rather take a

blood test at home there is now a testwhich allows a person to prick theirfinger and place the drop of blood in atube containing a solution in to whichthe person then introduces a test stickfor five minutes.

If the IgA antibody, that is found incoeliacs is present, it will bind to the

red cells in the blood and the twolines will appear on the test strip (alittle like a pregnancy test).

The Biocard Celiac Test originatesfrom Finland but has been introducedto the UK market by JRBiomedical,

Scots debateValentine’s Day may well be associated with matters of the heart but theScottish Parliament will actually be turning their attention to matters alittle lower down in the digestive tract.

Following a motion by Lothians MSP, Margo MacDonald, the parlia-ment will discuss what she motion describes as a lack of knowledge thatmakes it hard for people to be medically diagnosed with coeliac. Mac-Donald’s motion suggests the parliament should promote education andtraining of Scottish GPs so the disease can be diagnosed and treated moreeffectively.

Prescription alertMore than 100 MPs have now signed the Early Day Motion (EDM) in theHouse of Commons which was tabled by Gordon Banks MP, the Secretaryof the All-Party Parliamentary Group (ARPG) on Coeliac Disease andDH, expressing concern at the recent moves by Primacy Care Turusts(PCTs) to cease or restrict prescriptions for gluten-free products and thefact that this seems to be motivated by price rather than clinical consider-ations.

The APPG officers also agreed to write to the Department of Health toenquire what guidance was being given to PCTs on this issue.

Research grantCoeliac UK has announced it was part of a successful bid to receive a£500,000 grant from the Health Foundation. This will be used to look atdeveloping best practice in primary care and transfer to secondary carefor dealing with coeliac disease, IBS, IBD, and GORD. Coeliac UK was partof a joint-bid which included King’s College, London; the Primary CareSteering Group (PCSG); CORE (the Digestive Disorders Foundation) andthe National Council for Colitis and Crohn’s Disease (NACC). The bid is fora 3 year research programme.

“The blood tests nowavailable to GPs are a

valuable tool that allowsdoctors to confirm a sus-

picion of coeliacdisease“which specialises in home test kits. Its

founder, John Rees, claims the equip-ment does not replace the GP butrather makes the first step towards adiagnosis easier.

“The symptoms are so often con-fused with other things, such as Irrita-ble Bowel Syndrome, that a lot ofpeople are not tested early on,” heclaims.

“We’re just helping out with thatinitial first step by making it reallyeasy for someone at home to see ifthey have coeliac. A lot of peopleappreciate being able to do this intheir own home and getting back aninstant result.”

For more information about the BiocardCeliac Test, visit www.coeliactest.co.uk.


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GP understanding of coeliac is getting much betterGPs come in for a measure of criticism from gastroenterologists when it comes to coeliac disease. Whilst a health pro-fessional based at a hospital may sometimes lament how long it has taken a patient with coeliac symptoms to bereferred for tests, they do have to concede that it is not one of the easier conditions to diagnose.

The classic problem for a busy GP isthat the symptoms of coeliac arerather vague. Many problems canlead to stomach pains, feeling lethar-gic and loose bowels so it can be hardfor a GP to consider coeliac aboveother conditions, as GP Sohail Buttexplains.

“The problem is that something like20% of us will be experiencing thesymptoms associated with coeliac atany one time,” he suggests.

“The symptoms are simply so non-specific because everyone occasional-ly has some gas, diarrhoea or abdomi-nal bloating. So, in defence of GPs,

you do have to say that when some-body ‘presents’ to you with very every-day symptoms, coeliac would not nec-essarily be at the top of your list.”

Is it IBS?This classically leads to the misdiagno-sis of Irritable Bowel Syndrome (IBS)

because it affects far more people thatcoeliac, and so would appear to themost obvious cause of the discomfort.

“The real trouble is there’s no bloodtest for IBS, it’s based on observation,on what the patient tells you abouttheir condition,” Butt continues.

“It means that if you can’t test for

IBS it’s hard to test the diagnosis oneway or the other and so people canstay diagnosed as having IBS whenthey actually have coeliac. That’s whyit’s very important the message getshome to GPs that they should perhapsgive a little more emphasis to coeliacand they should use the blood testswe now have available to us, even ifit’s just to cross coeliac off the list.”

Long term riskThis should help with the problem ofpeople with coeliac remaining undiag-nosed and risking their long term healthby not keeping to a gluten free diet.

“Obviously it’s very important thatwe, as GPs, do everything we can tomake sure people with coeliac do notgo undiagnosed,” Butt explains.

“It’s not just so they feel better,which is obviously very important, butthe longer somebody suffering withcoeliac goes on eating gluten the morelong term damage they risk doing.

“There used to be a lot of concernover bowel cancer, and there still is aslightly heightened risk, but it’s notanywhere near as bad as we oncefeared. The real, general problem isthe malabsorption of vitamins andminerals which means there is a seri-ously increased risk of osteoporosis aswell as people being anaemic.”

Better educationPart of the problem with coeliac dis-ease is that it has been greatly misun-


eing diagnosed with a lifelong food intolerance may not seem like cause for celebration, but for many people

with coeliac disease an official diagnosis is the start of their return to health. Finally theyknow how to make themselves feel better andcan say goodbye to previous symptoms, suchas tiredness, weight loss and stomach pains.

Coeliac disease is caused by intolerance to gluten; a protein found in wheat, rye and barley. Often misdiagnosed as irritablebowel syndrome (IBS), wheat intolerance

or stress, the symptoms of coeliac diseasecan improve by simply sticking to a gluten-free diet.

First steps to diagnosisThankfully diagnosing coeliac disease hasrecently become easier. Home screening kitsare now available, allowing you to do thefirst, initial test. The new Biocard CoeliacDisease Test only takes a few minutes and is simple to do. You can find out moreinformation or buy a test atwww.coeliactest.co.uk.

Please bear in mind the home test is to helpinitial screening only. If your results arepositive you’ll need to visit your GP to get afull diagnosis and a referral to agastroenterologist.

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derstood in the past. When today’solder GPs were training the acceptedwisdom saw it as a condition thatonly, or at least mainly, affected chil-dren and was something suffererswould grow out of.

Today, though, with better educa-tion and the option of blood tests forcoeliac, Norma McGough, Head ofDiet and Health at the charity CoeliacUK, believes GPs are starting to turn anew leaf.

“There’s a very simple reason for somany people going undiagnosed,” shesuggests.

“If you don’t think of it, you don’ttest for it. Traditionally it’s not been adisease that primary care has notdealt with day to day because patientshave a final diagnosis made at hospi-

tal and that tends to be where they goto for care, so because GPs are notaround it all the time, I’m not surethey’ve always known where they fitin.

“This is changing, though, withbetter education and many GPs andtheir nurses are becoming speciallytrained to diagnose and treat coeliac.”

Indeed, Sohail Butt agrees thatwhilst some GPs’ record on diagnosingcoeliac has left room for improvement,health care professionals are now farbetter education about the disease, itssymptoms and, most importantly, howsimple it is to get a blood test done tofind out if vague symptoms are coeliacor something else.

“You can only run tests for some-thing you’ve thought of,” he confirms.

“Fortunately I really believe thateducation has improved and aware-ness is far higher now among themedical profession so we should seean improved rate of diagnosis and,hopefully, start to put an end to thedays of somebody suffering real dis-comfort but nobody thinking to checkfor coeliac.”

“Education hasimproved and awareness

is far higher now “

Coeliac camping party in SwedenCoeliac Youth of Europe runs projects to help raise awareness of coeliacdisease and to put young people with the condition in touch with oneanother. Its annual Youth Summer Camp has been scheduled for August7th to 14th in Sweden and is open to, at first, three CYE members fromeach European country aged 18-30.

The camp costs 350 euros (including accommodation and food) andwill be held near Stockholm. A two day party boat trip to Tallinn, the cap-ital of Estonia is also planned. The registration deadline is February 28thand applications are being handled by the Swedish Coeliac Youth Societywhose contact details can be found on the main Coeliac Youth of Europewebsiste, www.cyeweb.eu


If Blake Patterson’s controversial conviction is provedcorrect in medical trials, coeliacs could have a pill thatwill allow them to eat an everyday diet from the end ofthe decade.

Could a pill really curecoeliac?

It is a huge promised to deliver onbut the CEO of American pharmaceuti-cal company, Alba Therapeutics, isconvinced that Phase II human trialsare providing such good data that thecompany’s unique hunch about how toprevent coeliac will be borne out. It is aconviction, however, for which othergastroenterologists are saying theywill need to see supporting clinicaldata before they consider changingtheir views on coeliac and its cause.

Three triggers?Traditionally doctors have agreedthat autoimmune conditions, such ascoeliac, require two factors. For a per-son to suffer from the disease theyneed to be genetically predisposed tothe condition and then they need atrigger from their environment to setit off.

However, Alba, thanks largely towork carried out by its co-founderProfessor Alessio Fasano, has aunique view that there is a third trig-

ger. The premise behind the pill it ishoping to launch in 2010 is that thereneeds to be ‘barrier disfunction’ in thegut. In other words, it is not enough tobe genetically predisposed to coeliacand it is not enough to eat gluten, thethird trigger is a ‘leaky’ gut that allowsgluten to get through the gut liningand cause the immune system to react.The logic goes that if gluten were notable to get through the gut lining itwould just pass through the body.

As medical theories goes it flies inthe face of many years of acceptedwisdom, but Blake Patterson is con-vinced it will be proven correct.

“When something is in your gutthat your body wants to get rid of,such as harmful bacteria, the gut canuse bile and other secretions to neu-tralise the problem,” he points out.

“If that doesn’t work the next stepis for the gut lining to be opened upslightly by the cells in the liningincreasing the gap between them-selves so water can be secreted and

the antigen flushed away.“The problem is, we believe, this

process can be exaggerated in coeli-acs. The gap becomes too big and thesubstance the body is trying to get ridof, gluten, can get in to the body andcause the autoimmune response.”

Alba’s claimed big breakthrough isto identify the molecule which con-trols this natural widening of the gapbetween cells, called zonulin. Thecompany claims that in coeliacs toomuch is produced, causing the gutlining to become permeable to gluten.

Hence it believes, if you can controlthis process you can stop the gutbecoming ‘leaky’ and prevent thegluten getting out of the digestivesystem and sparking the autoimmunereaction that causes coeliac.

“We’ve proven the theory aboutzonulin in animals and now we’regetting very positive data on our

human trials,” Patterson claims.“If we get approval, and I believe

we will, we will be able to offer coeli-acs a pill they take around quarter ofan hour or twenty minutes beforeeach meal. This then controls theoverproduction of Zonulin so theycan eat food containing gluten with-out any problems.”

Publish dataAs one can imagine, such a claimedsolution to coeliac disease has causedsome controversy amongst the scien-tific community who are yet to beconvinced that the theory behindAlba’s approach is sound. Hence themedical community is waiting for

Alba to publish clinical data thatbacks up its claims, as Paul Ciclitira,Professor of Gastroenterology at StThomas’ Hospital, London, points out.

“Alba are making a lot of claims butI, and I know a lot of my medical col-leagues, will only start to take the sci-ence seriously once they publish trialdata,” he insists. “Until this happens,their claims will remain a hypothesisthat has not been examined by peers.”

Patterson’s response is that Alba isin the process of preparing to publishits first set of clinical data which theyexpect will be published in a scientificjournal within the next couple ofmonths.

“We’ve proven the the-ory about zonulin in ani-mals and now we’re get-ting very positive data on

our human trials“

“When I wanted to find out what is the key to the gut lining opening upto wash out what the body was rejecting, I couldn’t find any material“

Has this Professorunlocked the secretsof coeliac?Alessio Fasano has a theory that science is 90% serendipity and the rest is “just goodluck”; a joke that underlines how he came to discover the potential of Zonulin.

Back in the late 1980s he was taskedwith developing a cholera vaccine. Hewas very proud of the vaccine he pro-duced but, in testing, it just had oneproblem. “It didn’t work,” lamentsFasano.

“The people who took it got ill andso it was a failure so I got drunk for acouple of days before I noticed thepeople that were ill were showing areaction, caused by a toxin, that wasso complex I knew the toxin had to bemimicking something that occursnaturally.”

The Director of the Mucosal Biolo-gy Research Centre at the Universityof Maryland School of Medicineclaims that this ‘something’ turnedout to be Zonulin which years of

experimentation convinced Fasanocould be used to help the gut rejectantigens, such as (for coeliacs) gluten,and so, in theory, halt autoimmunedisorders.

No data “When I wanted to find out what isthe key to the gut lining opening up

to wash out what the body was reject-ing, I couldn’t find any material,” hereflects.

“I couldn’t find anything whichcould tell me what held the key to thedoor that was opening up when the gutlining cells separated and so I experi-mented and I believe Zonulin controlsthe process and its overproduction

Slovenia hostsEuropean conference

The Association of EuropeanCoeliac Societies (AOECS) is tohold its 21st Conference in Mari-bor, Slovenia.The hosts, the Slovene CoeliacSociety, expect around 100 repre-sentatives from 20 member soci-eties across Europe to attend andeminent speakers are alreadybeing lined up to present.The conference will be held in the(5 Star) Hotel Habakuk and skifans may well know the area forthe Pohorje Mountain that loomsabove the hotel on which the bestwomen skiers in the world com-pete for the Golden Fox trophy.www.aoecs.org

causes the gut lining to become ‘leaky’.My reasoning since then has been ifwe can control Zonulin, we can keepthe gut barrier intact.”

Not for allAlthough as the co-founder of AlbaTherapeutics he believes he is on theverge of being able to supply coeliacswith a pill that will help them managethe condition, he is honest enough toadmit that not all will want it.

“My patients fall in to three equalcategories,” he explains.

“There’s the third that are happyand are used to a gluten free diet whowon’t want to take a pill for fear ofany reaction. There’s the third thatwill keep to a gluten free diet but willtake a pill when they eat away fromhome because they can’t be sure thefood is truly gluten free. Then there’sthe young third who just want a nor-mal life and to eat the food theirfriends do, they’ll take the pill all thetime so they can be like any other kid.”


Kimball Genetics:Experts in Celiac Disease Testing and EducationKimball Genetics, Inc., is a leading genetic testinglaboratory specializing in DNA analysis forcommon genetic disorders. Known for its unparalleled turnaround time and distinctivefocus on genetic counseling, the company has a major commitment to education, research,and testing for celiac disease.

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Diagnosis of Celiac Disease Celiac disease affects 1% of the population but is highly underdiagnosed, with less than 5% of cases currently detected. Early

diagnosis and treatment with a gluten-free diet are criticalto relieve inflammation and other symptoms and to reducethe risk for secondary autoimmune disorders. Classical ap-proaches to diagnosing celiac disease involve antibodytesting and small bowel biopsy. DNA testing is also an im-portant tool in the diagnostic work-up of this disorder. Un-like the other tests, it is accurate when the patient is on agluten-free diet and needs only be performed once in a life-time.

The Celiac Disease DNA TestThis test detects the gene variations coding for celiac diseaseassociated markers, DQ2 & DQ8. One of these must be presentfor the disease to develop. Therefore, the DNA test is powerfulas it excludes the diagnosis of celiac disease in patients whoare negative for these genetic markers. The Celiac DiseaseDNA Test is particularly useful when 1) ambiguous an-

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Kimball Genetics’ Unique Service Kimball Genetics is the only laboratory offering celiac diseaseDNA testing on cheek cell samples with results available inone day. In addition to their reliable and rapid testing, thecompany is renowned for their excellent customer service.

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“Most of these peoplewill find that a gluten

free diet will allow theirgut to repair itself in a

matter of weeks“

Coeliacs can make themselveslactose intolerantThe damage done to the gut lining by coeliac disease can have the secondary effect ofmaking people lactose intolerant.

Due to the gut lining becoming flat-tened by coeliac, the digestive tractcan have problems producing theenzymes its needs to break downother food. Prime among these is theenzyme, lactase, which breaks downlactose, the natural sugar found indairy products.

Symptoms for lactose intolerancecan vary great, just as they can withcoeliac, but bloating and diarrhoeaare among the most common.

For people with coeliac disease thelactose intolerance can be temporarybecause once a gluten free diet isintroduced, the gut should repairitself and so enable the production oflactase which can then being break-ing down lactose.

“A lot of people with coeliac findthat milk or dairy products can upsetthem and, in fact, it’s the way thatsome people go on to become diag-nosed as coeliac,” says Dr John May-berry, gastroenterologist at LeicesterGeneral Hospital.

“Most of these people will find that

a gluten free diet will allow their gutto repair itself in a matter of weeksand then they can eat dairy productswith no problem. Most adults will getto this stage in just a couple of weeksbut some people may need a shortcourse of steroids to counter the gutinflammation or a very strict, pre-pared ‘space’ diet where there’sabsolutely no chance of any glutenbeing in there.”

Hence, many coeliacs are not trulylactose intolerance and so can expectto be back to normal, and able to eatdairy, within a couple of months ofbeing prescribed a gluten free diet.

One in sevenOf the UK population it is estimated

that around one in seven people aretruly lactose intolerant for life. Thefigure is highest among ethnicminorities because the UK is in asmall band of countries where theindigenous populations are not proneto lactose intolerance.

“It’s interesting but North WestEuropeans are the only people in theworld that carry on producing lactaseall their life, so they generally cantake dairy products all their life,”explains Mayberry.

“In Asia, Africa and the Far East,for example, the figures for lactoseintolerance are far higher becausepeople from these areas do not pro-duce lactase all their lives. Everyhuman produces lactase as a baby butin many populations the productionis cut off - in South Asia it’s usual forchildren to stop producing lactase forthe rest of their lives from the age offour.”

For people concerned they may belactose intolerance, either perma-nently or as a side effect of coeliacdisease, Dr Mayberry has published aself diagnosis guide (www.lactofree.co.uk) which suggests people shouldtake no dairy for three to four weeksto see if symptoms clear up and thenreintroduce dairy, though a glass ofmilk, to see if they return.


Information is key to a gluten free diet

Hence, a gluten free diet does not justmean avoiding obvious gluten con-taining food – such as bread, rolls,cereals, cakes, pizza and biscuits – butalso checking labels on all food pack-ets to ensure they are free of gluten. Aclassic can be crisps which, althoughpotato based, often have gluten addedto help bind the flavoured ingredientsto each crisp.

Education key“It can be difficult and some peoplecan struggle when they are first diag-nosed but the better informed a per-son is, the better they tend to cope,”explains Norma McGough, Head ofDiet and Health at Coeliac UK.

“Coeliacs are helped now by aller-gen labelling on food and since end of2005 all packaged foods have had tolist their ingredients. It’s hugelyimportant coeliacs have the rightinformation so at Coeliac UK we pro-duce an annual Food and DrinkDirectory which lists 11,000 productswhich are gluten free so coeliacs canget to know which products are safe.”

The good news for anybody diagnosed with coeliac is that it is the one autoimmune disease for which there is aknown cure, a gluten free diet. The bad news is that gluten is found in so many food products today because of itsability to bulk out the likes of sausages and burgers and a multitude of packaged processed foods. Ordinarily, thefood concerned would not make the average person in the street suspect it contains gluten but coeliacs have longbecome accustomed to having to check food contents carefully for gluten.

Gluten free diets have even startedto become trendy and some peopleare choosing to avoid food containinggluten for health or weight loss rea-sons, although McGough does cau-tion that sometimes the books that gowith such diet fads are not always themost accurately researched. Indeedshe claims to be able to name one thatactually suggested that rye bread wasgluten free – this despite the fact ryeis one of the three sources of gluten!

Wine or beer?Drinking is another area where coeli-acs need to be cautious because mostalcohol, other than wine, comes fromdistilling grain to make spirits or fer-menting hops and barley to makebeer. However, not all alcohol must beavoided, McGough points out.

“Beer used to be thought of asgluten free right up until the ‘70s butI’m afraid for beer drinkers we nowknow it isn’t,” she points out.

“There are some brands that makegluten free beer, so those are ok. Thegood news for spirits drinkers is that

although you would think they wouldhave gluten in them, they don’t,because in the distillation process, pro-teins do not get through to the finaldrink and so there is no gluten.”

Wine can be considered generallysafe to drink because it comes fromgrapes rather than barley, wheat or rye.

Dinner datesFor coeliacs doing all they can to keepto a gluten free diet, the most worry-ing time can be dining out becauserestaurant meals are placed before adiner without the type of foodlabelling coeliacs would expect toexamine in the supermarket.

“The really big challenge is whenyou eat out at a restaurant becausethere’s no label, just a plate of food infront of you,” McGough continues.

“The only solution is to talk to therestaurant and explain you must nothave food that contains gluten but that’sno guarantee because they may notknow that something contains gluten –soy sauce containing wheat and some-times barley is a good example if you

are eating out at a Chinese restaurant.“There is also the risk of contami-

nation where gluten free food mightbe prepared in the same area as othermeals and so gluten could accidental-ly be mixed in a supposedly glutenfree diet.”

The goods news is that manyrestaurants, particularly chains, arenow starting to label meals as beinggluten free and so coeliacs can restassured that their own meal does notcontain gluten and can at least haveconfidence the restaurant is familiarwith coeliac and should hopefully bedoing all it can to prevent contamina-tion.

The classic food stuff that is oftenaccidentally contaminated is chips. Ina fish and chip shop the best tastingchips traditionally come from recycledoil that was first used to fry fish inbatter, which obviously leads to flourgetting in to the oil. So ideally a coeli-ac should think twice about orderingchips when outdoors unless they canbe assured they are gluten free.

At homeContamination of food is not just arestaurant issue, coeliacs need toensure they have gluten free productsthat cannot be mixed with food con-taining gluten – a separate cupboardand dedicated shelf in the fridge is agood idea here.

Also, coeliacs should always try toprepare meals containing gluten in aseparate part of the kitchen fromthose without gluten and should beparticularly aware that should theyuse flour containing gluten, anydebris should be cleared immediately.

If looking for inspiration for cook-ing gluten free meals, it is worthremembering that rice and maize donot contain gluten and so Japanese,Chinese, Indian and Mexican dishesare worth experimenting with. It hasto be pointed out, though, that saucesmay still contain gluten so, as ever,read the label first before adding any-thing to a dish you are preparing.

Goats Cheese& CranberryStacks A divine starter or snack suggestion,combining tangy cranberry sauce,creamy goats cheese and pepperyrocket, piled high on a lightly toastedgluten free roll.

Ingredients:1 JUVELA Gluten-Free Roll, sliced inhalf2 x 1cm thick slices French goatscheese 4tbsp cranberry sauceSmall handful of rocket leaves1tbsp balsamic vinegar

Method:1. Lightly grill the underside of eachhalf of the roll.

2. Spread the cranberry sauce on thenon-toasted side.

3. Top with the slice of goats cheese.

4. Return to the grill for a few minutesuntil cheese is bubbling and golden.

5. Top with rocket leaves and drizzlewith balsamic vinegar to serve.

B

Coeliac UK publishes several recipe books aimed at both adults and children who have been prescribed a gluten free diet. It also publishes a gluten free recipe each month at www.coeliac.co.uk

Coeliac UK is a registeredcharity that is free to join foradults and parents of chil-dren under 16 who have

been diagnosed with coeliacdisease or dermatitis her-petiformis. Members areprovided with the annualFood and Drink Directory

and there is a helpline (0870444 8804) to call and checkwhether products are gluten

free. www.coeliac.co.uk


Whilst the condition is serious in peo-ple of all ages, there are some seriousside effects of coeliac in growing chil-dren that parents should be aware of sothey can have a child exhibiting thesigns of coeliac disease tested promptly.

Due to coeliac disease affectingthose who are genetically predisposedto the condition, coeliac parentsshould be aware each child has a onein ten chance of being coeliac.

The main effect of the disease in theyoung is to run the risk of stunting achild’s growth and developmentbecause the small intestine is not tak-ing in all the nutrients it should, par-ticularly calcium which helps buildstrong bones.

Milk is fineMothers need not worry about breastor bottle feeding a baby because infantmilk formulas do not contain gluten,although snacks and treats for teethingbabies will, so the advice is to replacethem with a fruit or vegetable snack.

General medical advice is to notexpose any baby to gluten until sixmonths old, at which time parents who

know coeliac is in the family shouldstill give a baby food containinggluten, because the chances are theinfant will not have the condition.

However, they should obviouslykeep a close eye on the child to see if itshows signs of coeliac. In the unlikelyevent that he or she does, glutenshould not be removed from the dietuntil a doctor or dietician advisesbecause it is only when the baby isexposed to gluten a doctor or gas-troenterologist can positively diagnosecoeliac.

At schoolObviously care needs to be takenwhen a child with coeliac goes tonursery and then school. The bestadvice is to talk to the child’s teacher,as well as the school’s cook, to makethem aware of the disease so they canhelp ensure the child is kept awayfrom food containing gluten. It has tobe pointed out that whilst most peo-ple are only too happy to help, there isno compulsion for any school to pro-vide gluten free meals.

Hence, a packed lunch prepared by

someone who is familiar with glutenfree eating is an option, particularly ifa parent is nervous about accidentalcontamination of food in the schoolkitchen.

It is also a very good idea to informthe parents of the child’s friendsabout the importance of not offeringsnacks containing gluten. The sameconversation has to be had with thechild’s siblings to educate them aboutthe need to never offer the coeliacchild a snack containing gluten.

A portion of the fridge should also beset aside for gluten free food to avoidcontamination with other food and it isa good idea to get the family out of thehabit of using their own cutlery to dis-pense food from a shared bowl or jar. Itis very easy for people to unwittinglybutter their toast, for example, andthen use that knife, which has been incontact with bread, to scoop out a serv-ing of jam and run the risk of leavingbreadcrumbs in the jar.

Gluten free productranges help coeliacs inthe supermarket

BY CHARLOTTE PARKER, SAINSBURY’S COMPANY NUTRITIONIST

It is estimated that there are around 125,000 people in the UK diagnosed with coeliacdisease and recent studies have shown that almost another 500,000 people have undi-agnosed coeliac disease. Coeliac is characterised by a flattening of the inside of theintestine caused by gluten, the protein found in wheat, rye and barley. It can go undi-agnosed for many years and symptoms include abdominal pain, poor absorption ofnutrients, malnutrition and poor growth in children.

If you suspect you are suffering fromceliac disease you should visit yourGP who will administer a blood test.Once you have been diagnosed withcoeliac disease or dermatitis herpeti-formis (DH), a skin condition linkedwith coeliac disease, the only treat-ment is a gluten-free diet. Your GPwill refer you to a dietitian to helpyou make the necessary changes toyour diet and plan a healthy balanceof foods. Sainsbury’s has a number ofsolutions within its Freefrom range soyou can still eat the foods you enjoybut without the gluten.

The Sainsbury’s Freefrom range iseasily identifiable in its distinctiveyellow packaging and to make theshopping experience easier allFreefrom products are groupedtogether in our stores. The packagingclearly states, on the front of pack,which are free from gluten, wheatand/or dairy.

To help you enjoy naturally glutenfree foods the ‘suitable for coeliacs’stamp is often used on our own brandpackaging. We also provide a full listof products available at Sainsbury’sfor coeliacs which can be downloaded

PROMOTIONAL FEATURE

from the Coeliac UK website orrequested from the Sainsbury’s cus-tomer careline on 0800 636262.

If you have any questions on aller-gies, intolerance or Freefrom our cus-tomer careline line holds full detailson all Freefrom lines.

Helping babies and childrenwith coeliac disease live full livesCoeliac disease used to be wrongly considered a diseasethat mainly affected babies and children who wouldgrow out of the condition in adulthood.

“Gluten should not beremoved from the diet

until a doctor or dieticianadvises “

“We also provide a fulllist of products available

at Sainsbury’s forcoeliacs“

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT COELIAC DISEASE, DISTRIBUTED IN THE TIMES

For those people who have been diagnosed, the starting point is. . . The leading provider of gluten-free products and support services

www.juvela.co.uk

Coeliac diagnosis canhelp women start familiesIf there is one time when a woman needs to be absorb-ing all the goodness from meals, it is during pregnancy.

However, the effect of coeliac diseaseis to puff up the lining of the smallintestine so it is less able to absorbnutrients and vitamins from food.

The result for women who arecoeliac, but unaware of their condi-tion, can be tragic as the body fails totake in sufficient minerals and vita-

mins to support mother and foetus,leading to a raised risk of miscarriage.

“The main problem is folic acid,”points out Paul Ciclitira, Professor ofGastroenterology at St Thomas’ Hos-pital, London.

“It’s important during pregnancybut people with coeliac suffer from

malabsorption so there is an increasedrisk of miscarriage.”

Unfortunately, the disease can alsocause infertility and so women whohave suffered miscarriage or have triedunsuccessfully to get pregnant for sometime, and exhibit symptoms of coeliacdisease, should ask their GP if theirproblems could be caused to coeliac.

If a blood test and biopsy show thatthey do have coeliac, the good news isthat once on a gluten free diet the lin-

ing of the small intestine shouldrepair itself within weeks and folicacid can be absorbed normally, reduc-ing the previously heightened risk ofmiscarriage.

Folic acid forms part of the family ofVitamin B and is found in leafy veg-etables, such as spinach. In fact, thename folic acid comes from the Latinfor leaf (folium). It helps the body syn-thesise DNA and grow new cells and sohas long been identified as a valuablevitamin for pregnant women.

Moving on to a gluten free diet willalso increase the absorption of othervitamins and minerals, such as calci-um and iron, and so make sure awoman with coeliac hoping to getpregnant is fit and healthy and moreable to nourish herself and a foetus.


Getting a better picture of coeliac symptomsThe symptoms of coeliac are difficult to diagnose at thebest of times but now William Dickey is suggesting theremay be a further complication.

William Dickey runs a dedicated clin-ic, attended by more than 600 peoplewith coeliac, at Altnagelvin Hospitalin Londonderry, Northern Ireland andis a medical advisor to the charityCoeliac UK. Through years of workingwith coeliacs he had become con-vinced that at least one of the symp-toms associated with the conditionwas not accurate and so he carried outresearch to prove the point.

Underweight It has always been reasoned that peo-

ple with ceoliac will turn up at a GP’sclinic suffering from a range of con-ditions, which normally includestomach pains, diarrhoea, anaemiaand, crucially, weight loss.

Accepted wisdom has alwaysthought, quite logically, that coeliaccauses malabsorption of food and so,as well leading to a lack of mineralsand vitamins being digested, canresult in the person losing weight.

The trouble is when William Dickeytook the time to follow up a hunchand examine this, he found it simply

does not hold up. In fact, quite to con-trary, he managed to show the oppo-site is often true.

“The problem is there is logic inmalabsorption leading to people los-ing weight,” he points out.

“In reality though what you find ispeople adjust. People may not knowthey’re coeliac but they might realisethat eating bread, cakes or pastamakes them feel unwell, so they avoidit. The trouble is they then often go onto replace these with other food, ofteneating more potatoes and havingchocolate as a snack which, as youcan imagine, can actually make themput on more weight.”

Indeed, his research figures for agroup of 371 coeliacs from variousage groups showed that only 5% wereunderweight when diagnosed(according to World Health Organisa-tion criteria) and 57% were of normalweight. Most interestingly, 39% wereactually classed as overweight.

Better educationDickey hopes his research will enableGPs to realise they should now adjusttheir preconception of coeliac and notexpect a person to ‘present’ withweight loss before they consider it asa diagnosis. In fact, quite to the con-trary, a person with undiagnosedcoeliac is far more likely to be over-weight.

Dickey hopes his research will helpfurther knowledge about the condi-tion, and its symptoms, which untilrecently has suffered from many mis-conceptions.

“One of the big problems we’ve hadto overcome is that coeliac used to bethought of as a child’s condition andsome of that misconception may stillbe out there,” he reflects.

“The belief, just a few decades ago,was that it was something some chil-

dren went through but parentsshouldn’t worry because it was some-thing they’d grow out of. We now,know of course, there’s no gettingaway from coeliac, the only cure is agluten free diet for life.

“The irony is that we now alsoknow that far from being a child’sdisease, the most common age to bediagnosed is between 40 to 60 and I’meven getting people that are in the 70sand 80s coming in and being diag-nosed at my clinic.

Hence, it is important that peopleworking in primary care considercoeliac more highly when they talk topatients about their symptoms, Dick-ey insists, because all too often he isfinding patients coming to his clinicshave suffered needlessly for yearsafter being told, wrongly, they haveIrritable Bowel Syndrome, (IBS).

“It can be really easy to confuse thesymptoms,” he reasons.

“People with coeliac generally havesimilar symptoms to IBS in thatthey’re run down, lethargic, gotabdominal pain and so on. The trou-ble is, IBS stays in the gut and sodoesn’t affect the rest of the body.Coeliac is an autoimmune disease andit can affect other organs and lead toother conditions, such as osteoporo-sis, so it’s vital that people are giventhe blood test for coeliac to makesure.”

The good news for people who arediagnosed is, as many doctors will tellyou, coeliac is the one autoimmunedisease for which medicine has aguaranteed cure – a gluten free diet.The more researchers, such as Dickey,can do to dispel myths about coeliac,the clearer a GP’s thinking can beand, hopefully, more people will bediagnosed and spared years of suffer-ing under the misdiagnosis of, typi-cally, IBS.

Coeliac warningfrom NICEProfessor Sir Michael Rawlins, thehead of the National Institute andClinical Excellence (NICE) is warn-ing the government is going tohave to rethink its plans on healthspending if it is to avoid cuts thatwill prevent coeliacs receivinggluten free food on prescription.

Rawlins listed coeliac prescrip-tions among many conditions thatcould be affected if the governmentdoes not put more funds in tohealth, a situation he described toThe Times as ‘the elephant in theroom for politicians’.

He warned that Tony Blair andGordon Brown’s success in increas-ing health spending to 9.3% ofnational income, in line with theEuropean average, was commend-able but “it’s going to haveincrease, unquestionably”.

“Je suis intolerantau gluten”If you are travelling in Europe andwould welcome help with phrasesexplaining your dietary require-ments as well as advice from localcoeliacs on which restaurants,cafes, hotel and bars cater forcoeliacs, a project run by the Coeli-ac Youth of Europe is well worthchecking out.

Through voluntary contributionsfrom members across Europe, theweb site now has a wealth of infor-mation for several countries underthe TravelNet section on itswww.cyeweb.eu website.

Coeliac is an autoimmune disease and can affect organs that can lead to conditions, such as osteoporosis.

Momentum is building forcoeliac disease awarenessLong believed to be a rare gastrointestinal disorder, coeliac disease is now known to becommon and multi-systemic. The disease affects approximately 1% of the generalpopulation and is very under-diagnosed, with approximately 95% of cases undetected.

BY ANNETTE K. TAYLOR, M.S., PH.D. AND PRESIDENT, KIMBALL GENETICS, INC.

Variable clinical presentation and ageof onset make coeliac disease difficultto diagnose, explaining why it takesan average of eleven years for anindividual to be diagnosed after theirsymptoms first appear. Early diagno-sis and treatment is critical for pre-venting serious complications sec-ondary to untreated coeliac disease.

The need for early diagnosis is evi-dent, and fortunately awareness ofcoeliac disease is now growing in themedical community and the public atlarge. Formal awareness campaignshave recently been launched by theNational Institutes of Health (NIH) and

the Children’s Digestive Health andNutrition Foundation (CDHNF) in theUnited States. In addition, there are anumber of academic coeliac diseasecentres, support groups and coeliacfoundations focusing on education,diagnosis and research. Major aca-demic coeliac centres in the US are atthe Universities of Columbia, Chicago,Maryland, California at San Diego, andStanford as well as the Mayo andCleveland clinics. Other key sourcesfor information about coeliac diseaseinclude the Celiac Disease Foundationwww.cdf.org, the Celiac Sprue Associ-ation www.csaceliacs.org, Gluten

Intolerance Group www.gluten.net, theAmerican Celiac Disease Alliancewww.cda.org, the National Foundationfor Celiac Awareness www.nfca.org,and Celiac.com www.celiac.com.

Scientific efforts to understand thecomplexity of coeliac disease are alsogaining momentum. Main forefrontsof investigation include the differentimmune mechanisms involved, per-meability of the intestine to gluten,the cause of other autoimmune disor-ders often seen in individuals withcoeliac disease, and alternative treat-ments to the gluten free diet. In addi-tion, non-gastrointestinal manifesta-

tions of coeliac disease are becomingmore recognised, leading to researchdetermining the incidence of coeliacdisease in populations with symptomssuch as ADHD, osteoporosis, andschizophrenia.

With strong educational programsand continuing coeliac diseaseresearch, the hope is that the rate ofdiagnosis for this disorder will growexponentially, improving the qualityof life for millions.

“Early diagnosis andtreatment is critical for

preventing serious complications“

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