diagnosis and management of adult coeliac disease
TRANSCRIPT
Quality in Practice Committee
Diagnosis and Management of Adult Coeliac DiseaseAUTHOR: Dr Audrey Russell Dr Eamonn Shanahan Professor Eamonn Quigley
Original Publication: 2015
Next Review Date: 2018
DISCLAIMER AND WAIVER OF LIABILITYWhilsteveryefforthasbeenmadebytheQualityinPracticeCommitteetoensuretheaccuracyoftheinformationandmaterialcontainedinthisdocument,errorsoromissionsmayoccurinthecontent.ThisguidancerepresentstheviewoftheICGPwhichwasarrivedataftercarefulconsiderationoftheevidenceavailableattimeofpublication.
Thisqualityofcaremaybedependentontheappropriateallocationofresourcestopracticesinvolvedinitsdelivery.Resourceallocationbythestateisvariabledependingongeographicallocationandindividualpracticecircumstances.Thereareconstraintsinfollowingtheguidelineswheretheresourcesarenotavailabletoactioncertainaspectsoftheguidelines.Thereforeindividualhealthcareprofessionalswillhavetodecidewhetherthestandardisachievablewithintheirresourcesparticularlyforvulnerablepatientgroups.
Theguidedoesnothoweveroverridetheindividualresponsibilityofhealthcareprofessionalstomakedecisionsappropriatetothecircumstancesofindividualpatientsinconsultationwiththepatientand/orguardianorcarer.
Guidelinesarenotpolicydocuments.Feedbackfromlocalfacultyandindividualmembersoneaseofimplementationoftheseguidelinesiswelcomed.
EVIDENCE-BASED MEDICINEEvidence-basedmedicineistheconscientious,explicitandjudicioususeofcurrentbestevidenceinmakingdecisionsaboutthecareofindividualpatients.
Inthisdocumentyouwillseethatevidenceandrecommendationsaregradedaccordingtolevelsofevidence(Level1–5)andgradesofrecommendations(GradesA–C)respectively.ThisgradingsystemisanadaptationoftherevisedOxfordCentre2011LevelsofEvidence.
LEVELS OF EVIDENCE
Level1: Evidenceobtainedfromsystematicreviewofrandomisedtrials
Level2: Evidenceobtainedfromatleastonerandomisedtrial
Level3: Evidenceobtainedfromatleastonenon-randomisedcontrolledcohort/follow-upstudy
Level4: Evidenceobtainedfromatleastonecase-series,case-controlorhistoricallycontrolledstudy
Level5: Evidenceobtainedfrommechanism-basedreasoning
GRADES OF RECOMMENDATIONS
A Requiresatleastonerandomisedcontrolledtrialaspartofabodyofliteratureofoverallgoodqualityandconsistencyaddressingthespecificrecommendation.(Evidencelevels1,2).
B Requirestheavailabilityofwell-conductedclinicalstudiesbutnorandomisedclinicaltrialsonthetopicofrecommendation.(Evidencelevels3,4).
C Requiresevidenceobtainedfromexpertcommitteereportsoropinionsand/orclinicalexperienceofrespectedauthorities.Indicatesanabsenceofdirectlyapplicableclinicalstudiesofgoodquality.(Evidencelevel5).
ICGP QUALITY IN PRACTICE COMMITTEE 2015DrPaulArmstrong,DrPatriciaCarmody,DrHarryComber,DrMaryKearney,DrNiamhMoran,DrMariaO’Mahony,DrMargaretO’Riordan,DrBenParmeter,DrPatrickRedmond,DrPhilipSheeranPurcell.
CORRESPONDENCE [email protected]
© 2015 ICGP
QUALITYINPRACTICECOMMITTEE–Diagnosis and Management of Adult Coeliac Disease
TABLE OF CONTENTS
1. Introduction1.1 Background 11.2 Aimsofthedocument 1
2. Subtopics2.1 Clinicalpresentationandcomplications 22.2 Whototest 32.3 Investigationsfordiagnosis 52.4 Managementatinitialdiagnosis 62.5 Followupofpatients 72.6 Noncoeliacglutensensitivity 9
3. References 10
4. AppendicesAppendix1–Dietaryadvice 14Appendix2–Diagramofpatientfollowup 19
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1. Introduction
1.1 BackgroundCoeliacdiseaseisaheightenedimmuneresponsetoingestedglutenandoccursin0.5–1%oftheIrishpopulation.Currentlycoeliacdiseaseisunderdiagnosed.Ithasastronggeneticcomponentwitha10%chanceofoccurrenceinafirstdegreerelative.Theonlytreatmentisadherencetoaglutenfreediet.Studieshaveshownthatdietarycomplianceisoftenpoorrangingfrom45–87%.Long-termhealthriskswithpoorcomplianceincludeincreasedriskofmalignancy,nutritionaldeficienciesandreducedbonemineraldensity.Researchhasshownthatdietarycompliancepositivelycorrelateswithregularfollowupandknowledgeofthedisease.
Currentlythereareanumberofguidelinespublishedonthemanagementofcoeliacdisease.However,alloftheseguidelineshavebeendevelopedoutsideoftheRepublicofIreland.ThisguidelinehasbeendevelopedforusewithinthecontextoftheIrishHealthcaresystemandputsinplaceaframeworkforthediagnosisandmanagementofpatientswithcoeliacdisease.Structured,comprehensivecareforpatientswithcoeliacdiseaseisnecessaryforlong-termfollowup.ThiscarriesfinancialandresourceimplicationsforGPpractices.
1.2 Aims of the documentTheaimofthisdocumentistoprovideIrishgeneralpractitionerswithanuptodate,easytofollow,evidencebasedguidancedocumentonthediagnosis,initialmanagementandfollowupofpatientswithcoeliacdisease.
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2. Subtopics
2.1 Clinical presentation and complicationsCoeliacdiseasecanpresentatanyageandhasawidespectrumofclinicalmanifestations(1,2).Themajorityofsymptomaticpatientspresentwithgradualonsetofgastrointestinalsymptoms,however,therearestillanumberofpatientswhoremainasymptomatic(3,4).
Table 1 – Clinical Presentations of Coeliac Disease
Gastrointestinal symptoms due to malabsorption
DiarrhoeaSteatorrhoeaAbdominalcrampsAbdominalbloatinganddistensionBorborygmiExcessiveflatulenceWeightlossbutpatientsmayalsobeoverweightorobese
Gastrointestinal Symptoms due to dysmotility
HeartburnRegurgitationDysphagiaVomitingEpigastricPainConstipation
Haematological(5) Iron/B12/FolatedeficiencyThrombocytopeniaThrombocytosisThromboembolismLeukopenia/neutropeniaVitaminKmalabsorptionleadingtocoagulopathyHyposplenismIgAdeficiencyLymphoma
Hepatological AbnormalLFTs–AST/ALTSkin DermatitisHerpetiformis
AlopeciaOral(6) Aphthousmouthulcers
GlossodyniaDefectivetoothenamel
Rheumatological ArthralgiaBone Osteopenia
OsteoporosisOsteomalacia
Gynaecological(7) LatemenarcheEarlymenopauseInfertilityRecurrentmiscarriage
Neurological(8) AtaxiaPartialseizuresMigrainePeripheralneuropathy
Psychological DepressionChronicfatigue‘Muzzyhead’
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Glutenfreedietistheonlyavailabletreatmentandnonadherencecanleadtocomplicationsofthediseasesuchas:
Table 2 – Complications of Coeliac Disease
Osteopenia
Osteoporosis
Malignancy:oropharyngealsquamouscellcarcinoma,Enteropathy-associatedT-celllymphoma,Adenocarcinomaofjejunum
IronDeficiencyAnaemia
SplenicAtrophy
Infertility
RecurrentAbortion
UlcerativeJejunoileitis
Neurologicaldisorders
DermatitisHerpetiformis
2.2 Who to test
Patients with symptoms, signs or laboratory evidence suggestive of malabsorption such as chronic diarrhoea or steatorrhea should be tested for coeliac disease (9) Level 1 Grade ACoeliacdiseaseresultsininjurytotheliningofthesmallintestinecausingvillousatrophywithsubsequentlossofmucosalsurfaceareaandimpairedabsorption.Theresultantinflammationleadstoexcessfluidsecretioncausingdiarrhoeawithabdominalpainandbloating.(10)CoeliacdiseaseisonethemostcommoncausesofmalabsorptionintheWesternworld.
Patients with a first degree relative with coeliac disease should be tested if they have signs or symptoms consistent with coeliac disease (9) Level 3 Grade BThefrequencyofcoeliacdiseaseissubstantiallyincreasedinpatientswithapositivefamilyhistory.AlargecommunitybasedstudyintheUSAin2003(11)foundthattheprevalenceofcoeliacdiseasewas;
• Atrisk,first-degreerelatives:1in10• Atrisk,second-degreerelatives:1in39• Atrisk,symptomaticpatients:1in56• Groupsnotatrisk:1in100
Newlydiagnosedpatientswithcoeliacdiseaseshouldbeinformedoftherisksandfamilialscreeningshouldbeadvised.
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Patients with a first degree relative with coeliac disease should be considered for testing even if they are asymptomatic(9) Level 3 Grade BEveniffirstdegreerelativesareasymptomaticitisreasonabletoconsiderscreeningthesepatients.Studiesinpatientswhohavebeendiagnosedonthebasisofscreeningreportimprovementsinqualityoflifeandimprovedhealth(12)withadherencetoaglutenfreediet.
Patients with Type 1 DM should be tested for coeliac disease if there are any digestive symptoms (9) Level 3 Grade CCoeliacdiseaseissubstantiallymorecommoninpatientswithtype1DMthaninthegeneralpopulation.Theprevalenceratesofcoeliacdiseaseinchildrenwithtype1diabetesareestimatedtobebetween1.7and12%.(13)Screeningstudieshaveshowntheprevalenceamongadultswithtype1diabetestobesimilar,between1.3and6.4%,whichis10timestheprevalenceinthegeneralpopulation.(14)
Population screening is currently not recommended for coeliac disease (15) Level 3 Grade BThecurrentviewisthatthereisnotenoughevidencetosupportadecisiontocarryoutmassscreeningofthegeneralpopulation.Despitethefactthatcoeliacdiseasefulfils5oftheWHOcriteriaforascreeningtestthisstillremainscontroversialduetocosteffectivenessissues(15)andpotentialharm(16).
ActivecasefindingmayincreasedetectionofthosewithcoeliacdiseasewhoareattendingaGPsurgery(17).5%ofpatientswithirritablebowelsyndromehavecoeliacdisease.Symptomaticpatientsorthosewithcloselyrelatedconditionsshouldbeconsideredfortesting.
Table 3 – Conditions Associated with an increase prevalence of coeliac disease (9) (15) (18)
Type1DiabetesMellitus
AutoimmunethyroidDisease
Metabolicbonedisease/earlyosteoporosis
Irritableboweldisease
Primarybiliarycirrhosis
Autoimmunehepatitis
Sjogren'ssyndrome
Addison'sdisease
Downsyndrome
Turnersyndrome
SelectiveIgAdeficiency
AbnormalAST/ALT
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2.3 Investigations for diagnosisInitial diagnosis is by a single blood test for Immunoglobulin A (IgA) anti tissue transglutaminase (9) Level 1 Grade BTheIgAtTGAisrelativelysensitiveandspecificfordiagnosingcoeliacdiseasemakingitthepreferredtestfordetection.Manystudiesdemonstrateaspecificityof>95%andasensitivityintherangeof90–96%.(2)(19)(20)
Measurement of IgA antiendomysial antibodies should be used as a confirmatory test in the case of elevated anti tTG antibodies (21) Level 5 Grade CMeasurementofantiEMAisnearly100%specificforactivecoeliacdiseaseandhas>90%sensitivity(2).ItshouldbeusedasaconfirmatorytestwhenantiTTGisborderlineortoruleoutfalsepositiveresults.AfalsepositiveantiTTGcanoccurinotherautoimmuneconditionssuchasautoimmunehepatitis(22)andtype1Diabetesmellitus(23).
If IgA deficiency is suspected then Ig A level should be checked and where a deficiency exists then IgG based tests should be performed. Level 4 Grade CIgAdeficiencyismorecommonincoeliacdiseasethaninthegeneralpopulationandoccursin2-3%ofpatientswithcoeliacdisease.MeasurementofserumIgAlevelisanappropriatenextstepifIgAbasedtestingisnegativeandthereisastrongclinicalsuspicionofcoeliacdisease.FiguresforIgGtTGsensitivityandspecificityvarywidelywhileIgGDGP(deaminatedgliadinpeptide)hasasensitivityandspecificityof>90%.(24)IfanIgAdeficiencyexiststhenIgGbasedtTGshouldberequestedfromthelaboratory.
All diagnostic serological testing should be performed while the patient is on a gluten diet. (9, 21)Level 4 Grade CFalsenegativetestresultswilloccuriftestingisperformedonaglutenfreediet.
HLA-DQ2/DQ8 testing should not be done routinely in the diagnosis of coeliac disease (2) (9) Level 2 Grade BTheadditionofHLA-DQtypingtoserologicaltestsdoesnotimprovetheaccuracyofbloodtestalonefordiagnosis(25).IncaseswheretherearestilldoubtsregardingthediagnosisafterhistologyorinsomeotherspecificclinicalsituationsthenHLA-DQ2/DQ8genotypingshouldbeconsidered(9).Suchtestinghasahighnegativepredictivevaluemeaningthosewhotestnegativeareveryunlikelytodevelopthedisease.(26)
The confirmation of coeliac disease is based on upper GI endoscopy with multiple biopsies of the duodenum (9) Level 3 Grade BApositivecoeliacdiseasespecificserologyinpatientswithvillousatrophyonendoscopyconfirmsthediagnosisofcoeliacdisease(27).
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2.4 Management at initial diagnosisPatients with Coeliac disease should adhere to a gluten free diet for life (9) Level 2 Grade A (See Appendix 1)Thereiscurrentlynoothertreatmentavailableforcoeliacdiseaseandsopatientsmustexercisestrictavoidanceofallproductscontainingglutenincludingwheat,barleyandrye.Itisdifficulttoavoidglutencompletelyduetoglutencontaminationoffood.
Itisunclearwhetherpatientswithcoeliacdiseaseshouldavoidoats.Themajorityofpatientscantolerateamoderateamountofrawoatsbutsideeffectscanoccurinsomepatients.Foradultsupto70g/dayissafe(28).Thereisstillneedforcautionwhenintroducingoatsduetothepossibilitythatcommercialoatsmaybecontaminatedwithgluten.
Aglutenfreedietwillleadtoresolutionofsymptomsandrepairofvillousdamageovertime.
Otherbenefitsofaglutenfreediet:
• Riskofmalignanciesisreduced(smallboweladenocarcinoma,BcellandTcelllymphoma)(29)
• Improvedbonemineraldensityandreducedfractures(30)
• Reducesriskofinfertility,spontaneousabortions,pretermdeliveriesandlowbirthweightinfantstothatofthegeneralpopulation(31)(32)
Patients with coeliac disease should be referred to a dietician (9, 33) Level 4 Grade CImprovedpatientknowledgeofthediseaseisassociatedwithbettercompliancewithaglutenfreediet(34).ManyGPsdonothaveadequateknowledgeortherequiredtimetoevaluateandeducatepatientsregardingtheirdiet.Dieticianscanperformtheinitialassessmentandadviseonglutenfreedietaswellasconductlong-termfollowupforongoingcompliance.
People with newly diagnosed coeliac disease should be tested for B12/folate/iron deficiency. Vitamin D testing should also be considered (9) Level 3 Grade BCoeliacdiseaseisassociatedwithiron,B12,folateandothervitamindeficiencies(35,36).ItisthoughtthatlowVitaminDlevelsarerelatedtolowbonemineraldensity.
All patients should have a DXA scan at presentation. Females with normal bone mineral density at presentation should be reassessed after the menopause and males at age 55 years (37). Level 2 Grade AOsteopeniaandosteoporosishavebeenreportedinalmosthalfofnontreatedcoeliacdiseasepatients(36).ManycurrentguidelinesrecommendaDXAscanatdiagnosistoreverseearlyosteopeniaandalsobecausethelatentperiodtodiagnosismaybelonginsomecasessignifyingalongerperiodofcalciummalabsorption(33).Despitethis,somecontroversyremainsastothecostbenefitofroutinelyperformingDXAscanatdiagnosis(38).
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Becausecoeliacdiseaseisanindependentriskfactorforosteoporosisthenperi-menopausalwomenandmenover55yearsareatincreasedriskdespitetreatmentwithaglutenfreediet.
All individuals with coeliac disease should be advised to consume 1500mg calcium per day ideally from dietary sources. Calcium supplementation should only be used if dietary intake is inadequate. Patients should be advised regarding usual care conservative measures to reduce osteoporosis risk (37) Level 5 Grade C
If calcium intake is adequate then Vitamin D replacement is not routinely needed unless in special circumstances such as the elderly or housebound (37) Level 5 Grade C
2.5 Follow up of patients(Seediagram–Appendix2)
Patients with coeliac disease should have an annual review (37). Level 3 Grade BMostofthecurrentlypublishedguidelinesrecommendanannualfollowupreviewofpatients(39).
At the annual review patients should be assessed for BMI, symptomatology, compliance with diet and complications of their disease (37). Level 4 Grade C
If there are concerns regarding compliance Coeliac serology should be taken (37). Level 4 Grade CMonitoringofadherencetodietshouldbebasedonhistoryandIgATTGorIgADGP(deaminatedgliadinpeptide)antibodies.(40)ThetTGtakelongertonormaliseonaGFDalthoughtheyhavebeensuggestedtobettercorrelatewiththedegreeofvillousatrophy(41).
Patients should be investigated for micronutrient deficiencies if diet is poor and any previously abnormal blood tests should be repeated (9). Level 5 Grade C
Patients with coeliac disease should receive vaccination against encapsulated organisms (37). Level 4 Grade CCoeliacdiseaseisassociatedwithsplenicatrophyandissufficientlyseveretocauseperipheralbloodchangeinapproximately25%patients(37).Thereisnoeasilyappliedtechniquethatreliablyidentifiesthosewithhyposplenism.Noristhereadefineddegreeofhyposplenismthatcanbeusedtodecidewhenapersonisatincreasedriskofsepsis.Asoverwhelmingsepsiscanoccurrapidly,itisadvisablethatthefollowingvaccinesshouldbeconsideredforthosewithcoeliacdisease-PCV13,PPV,Hib,MenACWY,MenBandannualinfluenzavaccines
(42).Patientsshouldbeeducatedregardingtheinfectiouscomplicationsassociatedwithhyposplenism.Patientswhoshowsignsofovertsplenicatrophysuchasacanthocytes,HowellJollybodiesortargetcellsonbloodfilmshouldbetreatedinasimilarfashiontoasplenicpatients(5).
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If symptoms persist after 6 months on a gluten free diet patients should be referred to a dietician with expertise in coeliac disease to assess dietary compliance (21). (Level 5 Grade C)Ifsymptomspersistdespiteaglutenfreedietotherconditionsshouldbeconsidered:
• Lactoseintolerance• Pancreaticinsufficiency• Wheat/maltintolerance• Lymphoma• Microscopiccolitis• Bacterialovergrowth• Irritablebowelsyndrome• Refractorycoeliacdisease
LactoseIntoleranceisassociatedwithcoeliacdiseaseandcanbeapresentingfeatureoralatecomplicationofnon-compliancewithaglutenfreediet.Villousatrophyandthesubsequentdamagetotheintestinalbrushbordercausesasecondarydisaccharidasedeficiencyleadingtolactoseintolerance(43).Patientspresentwithbloating,stomachpainand/orcramps,diarrhoea,flatulenceandnausea.Referraltoadieticianisnecessarybothfordiagnosisandongoingfollowupasthesepatientsareathighriskofcalciumdeficiency.Lactoseintoleranceimproveswithadherencetoaglutenfreediet.
Thereisaclearassociationbetweencoeliacdiseaseandintestinalnon-Hodgkinslymphoma.ThislymphomaisknownasEnteropathy-typeTcelllymphoma.Thesearerarelymphomasandaccountfor<1%ofallnonHodgkinslymphomas.CurrentepidemiologicalstudiesreporttherelativeriskofdevelopingNHLintherange3–6(5).Theriskofadenocarcinomaofthesmallintestineisalsoincreasedinpatientswithcoeliacdisease.However,theabsoluteriskofthiscancerisstillquitelowgivenitsrarity(44,45).Atpresentroutinescreeningformalignancyinpatientswithcoeliacdiseasecannotbejustified.
Referral to a gastroenterologist for repeat endoscopy or further investigation should be considered if there is: (37)
• Poor response to gluten free diet• Weight loss on a gluten free diet• Blood in stools• Onset of unexplained abdominal pain• Abnormalities in blood results
Level 5 grade C Thereiscurrentlynoconsensusonfollowupendoscopyforsurveillanceinasymptomaticpatients(46).
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2.6 Non coeliac gluten sensitivityNonCoeliacGlutenSensitivity(NCGS)isemergingasamorefrequentlyencounteredconditioninclinicalpractice.Itwasrecognisedasfarbackas30yearsago(47)butitisonlyinrecentyearsthattheincreasingprevalenceofthisconditionhasbeenrecognised.ItisthoughtthattheprevalenceismuchhigherthanthatofcoeliacdiseasewithoneUSstudydocumentingaprevalenceof6%(48).
Glutensensitivityisdefinedasareactiontogluteninwhichallergicandautoimmunemechanismshavebeenexcluded.Patientshavenegativecoeliacserologyandnormalduodenalmucosabuthaveresolutionofsymptomsonadherencetoaglutenfreediet.
NCGSislargelyadiagnosisofexclusion.Afteradherencetoaglutenfreedietwithresolutionofsymptomsaglutenchallengemaybeperformedtomakeadefinitivediagnosis(49).
Theaetiologyofthisconditioniscurrentlyunknownandfurtherstudyisneededtoelucidateanylongtermcomplicationsthatmayresultfromthiscondition.
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33. CiclitiraPJ,DewarDH,McLaughlinSD,SandersDS.TheManagementofAdultswithCoeliacDisease.London:BritishSocietyofGastroenterology;2010.[Online]Availablefrom:http://www.bsg.org.uk/sections/small-bowel-nutrition-articles/bsg-guidance-on-coeliac-disease-2010.html[Accessed14thMay2015]
34. ButterworthJR,BanfieldLM,IqbalTH,CooperBT.Factorsrelatingtocompliancewithagluten-freedietinpatientswithcoeliacdisease:comparisonofwhiteCaucasianandSouthAsianpatients.ClinicalNutrition.2004Oct;23(5):1127-34.
35. WierdsmaNJ,vanBokhorst-devanderSchuerenMA,BerkenpasM,MulderCJ,vanBodegravenAA.Vitaminandmineraldeficienciesarehighlyprevalentinnewlydiagnosedceliacdiseasepatients.Nutrients.2013Sep30;5(10):3975-92.
36. CarusoR,PalloneF,StasiE,RomeoS,MonteleoneG.Appropriatenutrientsupplementationinceliacdisease.AnnalsofMedicine.2013Dec;45(8):522–31.
37. PrimaryCareSocietyforGastroenterology.TheManagementofAdultswithCoeliacDiseaseinPrimaryCare.London:PrimaryCareSocietyforGastroenterology;May2006.
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38. LewisNR,ScottBB.Shouldpatientswithcoeliacdiseasehavetheirbonemineraldensitymeasured?EuropeanJournalofGastroenterology&Hepatology.2005Oct;17(10):1065-70.
39. SilvesterJA,RashidM.Long-termfollow-upofindividualswithceliacdisease:Anevaluationofcurrentpracticeguidelines.CanadianJournalofGastroenterology.2007Sep;21(9):557–564.
40. NachmanF,SugaiE,VázquezH,GonzálezA,AndrenacciP,NiveloniS,MazureR,SmecuolE,MorenoML,HwangHJ,SánchezMI,MauriñoE,BaiJC.Serologicaltestsforceliacdiseaseasindicatorsoflong-termcompliancewiththegluten-freediet.EuropeanJournalofGastroenterologyandHepatology.2011Jun;23(6):473-80.
41. PietzakMM.Followupofpatientswithceliacdisease:Achievingcompliancewithtreatment.Gastroenterology.2005Apr;128(4Suppl1):S135-41.
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43. PlotkinGR,IsselbacherKJ.SecondaryDisaccharidaseDeficiencyinAdultCeliacDisease(NontropicalSprue)andOtherMalabsorptionStates.NewEnglandJournalofMedicine.1964Nov12;271:1033-37.
44. GreenPH,FleischauerAT,BhagatG,GoyalR,JabriB,NeugutAI.Riskofmalignancyinpatientswithceliacdisease.TheAmericanJournalofMedicine.115(3);2003Aug15:191-5.
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47. CooperBT,HolmesGKT,FergusonR,ThompsonRA,AllanRN,CookeWT.Glutensensitivediarrhoeawithoutevidenceofceliacdisease.Gastroenterology.1980Nov;79(5Pt1):801-6.
48. SaponeA,BaiJC,CiacciC,DolinsekJ,GreenPH,HadjivassiliouM,KaukinenK,RostamiK,SandersDS,SchumannM,UllrichR,VillaltaD,VoltaU,CatassiC,FasanoA.Spectrumofgluten-relateddisorders:consensusonnewnomenclatureandclassification.BMCMedicine.2012Feb11;10:13.
49. HolmesG.NonCoeliacGlutenSensitivity.GastroenterologyandHepatologyfromBedtoBench.2013Summer;6(3):115-119.
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4. Appendices
Appendix 1 – Dietary adviceAdaptedwithpermissionfromPatientwebsite,http://www.patient.co.uk/health/coeliac-disease-diet-sheet©2015,EgtonMedicalInformationSystemsLimited.Allrightsreserved.
SinceSeptember2012glutenfreefoodsarenolongeravailableonthegeneralmedicalschemeordrugspaymentscheme.TheonlyfinancialsupportforthosewithcoeliacdiseaseistaxreimbursementattheendofthetaxyearbyfillinginaMed1Form.
GlutenfreefoodsareavailableinallmajorsupermarketsandhealthfoodshopsinIreland.
Reading labels and identifying gluten in foodsBylaw,ifafoodcontainsglutenitmustbelistedonthelabel.Youmayseeanallergenadviceboxsaying‘containsgluten’.Manyprocessedfoodscontaingluten,asitisusedasanadditiveorfoodsbecomecontaminatedduringtheproductionprocess.Therefore,itisimportanttocheckthelabelswhenoutshopping.
Avoidproductsthatcontainanyofthefollowing:
• Wheat• Barley• Rye• Spelt
• Oats(contaminatedoats)• Maltandmaltedbarley(foundin
breakfastcereals,vinegar,sauces,picklesandconfectionary)
Notallfoodsthataregluten-freewillmentionthisonthelabel,soalwayschecktoseewhetheritcontainsgluten.Thecrossedgrainsymbolisusedbymanymanufacturerstohighlightthataproductisgluten-free.Somemanufacturersmayusetheirownsymbol.Otherproductsmaysimplystateitonthepackaging.Forexample,youmaysee:
• Gluten-free• Suitableforcoeliacs• Freefromgluten
Foods that contain glutenCheckingthelabelsisusefulwhenidentifyingfoodsthatcontaingluten.However,itishelpfultohaveageneralideaofwhatfoodstoavoidandwhatfoodsareallowed.
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FOOD GROUP FOODS ALLOWED FOODS TO AVOIDCereals and flour
Cornflour,polenta,potato,cassava,beanandlentilflour,splitpeaflour,millet,quinoa,buckwheat,rice(alltypes),maize,arrowroot,sorghum,teff,amaranth.
Breakfastcerealsallowedare:somebrandedandequivalentsupermarketbrandsofcornorricebasedcerealse.g.cornflakes,ricesnaps,honeynutcornflakes.(Alwayscheckthelabelassomevarietiesmaynotbegluten-free.)
Wheat,rye,barley,bulgarwheat,spelt,durumwheat,triticale,khorasanwheat(Kamut®),wheatflour,wheatstarch,wheatbran,oatbran,semolina,couscous,maltandmaltedbarley,bale.
Avoidallwheat-basedbreakfastcerealsandmuesli.
Breads, cakes and biscuits
Gluten-freeproductsspeciallymanufactured(supermarketshavespecialisedranges):eg,breads,biscuits,pizzabases,flourmixes,cakes.Productsmadefromcerealsorfloursfromtheallowedlist.Productsmadewithoutflour(checkthelabelforotherglutensources)orwithgluten-freeflour.
Allbreadandbreadproducts-e.g.,croissants,bagels,pittabread,chapatti,naanbread,crispbreads,crackers,matzos,muffins,scones,croutons,pancakes,pizza,yorkshirepuddings,wafersandicecreamcones,pastriesandpies.
Pasta, rice and noodles
Alltypesoffreshrice.Ricenoodles(checkthelabel).Gluten-freepasta,cornpasta.
Anyfresh,driedortinnedpasta,andnoodles.Processedricefoundinsaladsorreadymeals.
Potatoes Allfreshpotatoes.Somecrisps(checkthelabel).Home-madechipsmadefromfreshpotatoes.
Processedpotatoes-e.g.,potatosalad,waffles,somechips,instantmash,crispsorpotatosnacks
Meat, fish and poultry
Allfreshmeat,fishandpoultry.Tinnedfish-e.g.,tuna/salmon.Smoked,kipperedordriedfish.Gluten-freesausages.Gluten-freefishfingers.
Someprocessedmeatsorproductscoatedinbatterorbreadcrumbs.Pies,puddings,suet,stuffing,fishfingers,chickennuggets,fishcakes,sausages,burgers,haggis,taramasalata,rissoles,Quorn®.
Milk, dairy, eggs and dairy alternatives
Naturalplaincheese,freshmilk,cream,condensedmilk,yoghurts,fromagefrais,soyamilk,goat’smilk,coconutmilk,almondmilk,ricemilk,driedskimmedmilkpowder,eggs.
Checkthelabelsofprocessedcheese,low-fatcheesespreads,artificialcreamandyoghurts.Yoghurtscontainingmuesliorcereals.Scotcheggs.
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Fats and oils Vegetableoil,oliveoil,butter,lard,reducedfat/low-fatspreads(checkthelabels).
Suet,somebrandsoflow-fatspreads.
Fruit, vegetables, nuts and pulses
Fresh,driedortinnedfruit,vegetables,nuts,beans,pulsesandseeds.Checklabelsofsomebakedbeanbrands.
Processedfruitandvegetablesthatarecoatedinbreadcrumbs/orinsauces.Somebrandsofnuts
Desserts and puddings
Meringues,sorbets,icecreams,jelly,mousses,custardpowders,milkpuddingsmadewithgluten-freeingredients.Alwayschecklabelsofthesefoodproducts.
Trifles,spongepuddings,semolina,tarts,andpuddingsmadefromfloursinthe‘foodstoavoid’list.
Snack foods Prawncrackers,ricecakes,poppadoms,home-madepopcorn,glutenfreecrispbreadsandcrackers.
Pretzels,Bombaymix,snacksmadefromfloursinthe‘foodstoavoid’list.
Confectionary, sweets and preserves
Sugar,goldensyrup,icingsugar,treacle,molasses,jam,honey,marmalade,peanutbutter,boiledsweetsandjellies.
Somechocolatebars,toffeesandsweets(alwayschecklabels).
Soups, sauces and seasonings
Freshsaltandpepper,herbs,spices,vinegars(e.g.,ricewine,balsamic),homemadefreshsoups,gluten-freesoups,saucesandseasonings.
Maltvinegar,packetsoupsandsauces,gravies,soysauce,ketchups,mayonnaise,saladdressings,picklesandchutneys,stuffingandstuffingmixes,stockcubes,bouillon,Worcestershiresauce(somebrandsmaybegluten-free).
Drinks and alcohol
Tea,coffee,fizzydrinks,squashes,cordials,freshjuices,milk,somecocoapowders,cider,spirits,wines,liqueurs,sherry,port.
Barleydrinksorsquashes,cloudyfizzydrinks,maltedmilkdrinks,instantvendingmachinedrinks,somemilkshakesandsportsdrinks,beer,lager,stout,ale.
Other Bicarbonateofsoda,freshanddriedyeast,marzipan,yeastextracts,tofu,foodcolouringsandflavourings,gelatine.
Bakingpowder,somemedicinesandvitamins.
Foods naturally free from glutenIffoodsarebeingexcludedfromthediet,itisimportanttoensureyouarestillhavingabalanceddiettogetallthenutrientsyouneed.Foodsnaturallyfreefromglutenincludefruit,vegetables,meat,fish,rice,potatoes,beans,pulses,nuts,eggs,milkanddairy.Stickingtoagluten-freedietcanbedifficult,soincludingplentyoftheseinthedietwillmakeiteasier.
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Gluten-free alternativesLivingwithadietfreefromglutencanbedifficult,andsothereareproductsavailabletohelpkeepthedietvariedandeasiertomaintain.Theseproductswillalsohelptoprovideyouwiththeenergyandnutrientsyouneed.
Thereisawiderangeofgluten-freeproductsavailable.It’slikelythatyou’llfindgluten-freealternativesofmostfoods.Productsavailableincludethebasicssuchasgluten-freebread,pasta,flour,plainbiscuitsandcakes,crackers,crispbreadsandpizzabases.Luxuryproductsincludebiscuits,cakes,muesli,muffins,stuffingmix,confectionary,cerealbars,fishfingers,chickennuggetsandotherconveniencefoods.
Manyofthesupermarketchainshavegluten-freeranges.Somecompaniesthatprovidegluten-freeproductsinclude:
• FreeFrom• Juvela• Glutafin• Genius• Ener-G• DS-glutenfree• Warburtons• Proceli• Barkat
Somecompaniesofferfreestarterpacks,soyoucantryarangeofproductsandfindonesthatyouprefer.Somegluten-freeproductscontainCodexwheatstarch,whichimprovesthetasteandtextureoftheseitems.Thiscontainsaverylowlevelofgluten,whichhasbeenshowntobetoleratedbymostofthosewithcoeliacdisease.However,asmallpercentageofpeoplewhoarehighlysensitivetoglutenmayfindthatsymptomsoccurandsochoosingproductswithoutCodexwheatstarchmaybemoreappropriate.
OatsOatscanbepartofabalanceddietinmostpeoplewithcoeliacdisease,withoutcausingdamageorsymptoms.Thesemustbepure,uncontaminatedoatsandsosomeproductsavailableonsupermarketshelvesmaynotbesuitable.
Oatscanbeausefuladditiontothediet,astheyareavaluablesourceoffibreandimprovevarietyinthediet.Thismakesiteasiertocomplywithagluten-freediet.However,oatsshouldbeexcludedforthefirstsixmonthsafterdiagnosis.Thisallowsyourbodytobecomeusedtoagluten-freediet.Oatscanthenbegraduallyintroducedbutshouldbedonewiththeassistanceofadieticianincaseyoureacttopureoats.
Overall balance of the dietOnceyouhavesuccessfullyachievedagluten-freediet,itisimportanttoconsiderotheraspectsofyourdiettokeepyouhealthy.Adietinlinewiththe‘eatwellplate’
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willprovideyouwithallthenutrientsandenergyyouneed.Aftercommencingagluten-freediet,theliningoftheintestinewillrepair,restoringnormalabsorptionofnutrients.Thismeansthatdeficienciessuchasiron-deficiencyanaemiashouldbegintoresolveandimprove.
CalciumThosewithcoeliacdiseasearemoreatriskofweakbones(osteoporosis).Thisispartlyduetohavingpoorabsorptionofcalciumwhenglutenhasbeenincludedinthediet.Thosewithcoeliacdiseasehaveahigherrequirementforcalcium.Anintakeof1,000mg–1,500mgeachdayisrecommended.Sourcesofcalciuminclude:
Glassofmilk/soyamilkenrichedwithcalcium(200ml) 245mgCheese(30g) 216mgYoghurt/soyayoghurt(onepot) 225mgGluten-freebreadfortifiedwithcalcium(twoslices) 300mgSardineswithbones(100g) 460mgTofu(100g) 510mgDriedfigs(100g) 250mgBroccoli 50mgBakedbeans(halfatin) 100mg
Youmayneedasupplementifyouareunabletomeetyourcalciumrequirementsthroughdiet.Additionally,vitaminDisnecessarytohelpabsorbcalciumfromfood.WemainlygetourvitaminDfromsunlight,asitisnotinmanyfoods.AskyourGPordieticianwhetheryouneedcalciumorvitaminDsupplements.
IronItcanbehelpfultoincludeiron-richfoodsinyourdiettohelpyouachievenormalironlevels.Animalsourcesarebetterabsorbedbythebody,butironisfoundinplantsourcestoo.VitaminCcanhelptoabsorbiron,soyoumaywanttohaveaglassoforangejuicewithmeals,eatapieceoffruitafteramealorincludefruitandvegetablesatmealtimes.
Ironisfoundin:• Redmeatsuchasbeeforlamb• Othermeatincludingchickenandturkey• Fishandshellfish-e.g.,sardines,mackerel,salmon,prawns,mussels• Liver,kidney,pâté• Beansandpulses-e.g.,lentils,chickpeasandbakedbeans• Greenleafyvegetables-e.g.,broccoli,cabbage,spinach• Nutsandseeds-e.g.,Brazilnuts,almonds,peanutbutter• Driedfruit-e.g.,raisins,apricotsanddates
Insummary,thegluten-freedietistheonlytreatmentforcoeliacdisease.Eliminatingglutencompletelyfromyourdietforlifeshouldhelptoimproveanydamagethathasoccurredtotheliningoftheintestines.Thiswillimprovesymptomsandyourabilitytoabsorbnutrientsfromfood.
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1. CheckBMI
2. Askresymptoms
3. CheckeitherantiTTGorantiDGPforcomplianceifappropriate
4. Askregardinganyredflags
a. Persistentsymptomsb. Bloodprc. Weightloss
5. Checkbonehealth-dotheyneedaDXAscan?Iscalciumintakeadequate?Adviserealcohol,smokingandexercise
6. CheckHb,ferritin,B12,folateifindicated
7. ConsiderimmunisationagainstPCV13,PPV,Hib,MenACWY,MenBandinfluenza
8. Adviserecoeliacsocietymembershipandtaxreimbursementonglutenfreefoods
Annual Follow Up Appointment
• Well – review in a year• Symptomatic/dietary questions/compliance issues – refer to a dietician• Persistent symptoms despite dietician review – consider alternative
diagnosis and refer to gastroenterology• Red flag symptoms – refer to gastroenterology
Appendix 2