where is the wheat

8/19/2019 Where is the Wheat

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Where’s the Wheat?

Managing celiac disease in

the small college settingPresented by

Marty Reuman Pieper, MSN, FNP-BCBentley University

erri !aylor, MSN, "NP-BCBentley University

#eanna Busteed, MS, R#, CSS#, $#


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"ns%er&

Everywhere


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'hy here and no%(

) iven average delay in diagnosis, may bediagnosed in college students

)College students are *ne%ly+ responsibleor ood choices at dining services,choosing snac.s, buying groceries

) Undiagnosed celiac disease is associated %ith a /0 increased ris. o death

) Prevalence has increased dramatically


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Prevalence o Celiac #isease

) Commonly estimated at 123 o "mericans45uals 16 million people7nly 12-83 have been diagnosed

) 1293 among irst degree relatives) Up to 1:83 in identical t%ins

) Female & Male && ;&2) Cultural demographics

More li.ely to occur among 4uropeans

Probably underestimated in many countries


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Perspectives

) Compare toRheumatoid arthritis *123 o "mericans+4pilepsy *123 o "mericans+#iabetes type 2 and ; *


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Normal Small =ntestinal >illi

%%%?mayoclinic?com@health@medical@=M9;A9

http://www.mayoclinic.com/health/medical/IM02906http://www.mayoclinic.com/health/medical/IM02906


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Pathophysiology o Celiac #isease

From "M" Patient Page Sept ;99A


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Pathophysiology

) "utoimmune disorder %ith environmentaltrigger

"bnormal response to gluten protein

) enetic component) 7ccasional triggers

=n ectionPhysical inDury or surgeryPregnancySevere stress


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Clinical PresentationEClassic gastrointestinal symptoms

Chronic diarrhea 45-85%

Fatigue 78-80%

Abdominal pain and bloating 4-!4%

"eight lo## or low weight 45%

Con#tipation $ - 8%

&omiting 5-$!%


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Clinical Presentation *continued+E"typical non- = symptoms

Fatigue' malai#e 78-80%

(#teopenia up to 40%

)ermatiti# herpeti*ormi# $5- 5%

+ron de*iciency anemia $0-$5%

,hort #tature $0%

(#teoporo#i# $ 5- %

.eurological dy#*unction 8-$4%


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Clinical Presentation *continued+

ESilent) "symptomatic or minimally symptomatic individual) Positive serology @ mucosal damage

) #iscovered through screening or during evaluationor another disease

E$atent) Previous celiac diagnosis that responded to

managementG then asymptomatic %ith normal diet) May have positive serology) Normal mucosa) Progresses to celiac disease over time


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"ssociated %ith other conditions

7ther autoimmune disease H693I!hyroid disease Hup to 2/3I!ype = diabetes Hup to 2;3I=n ertility, repeated miscarriages H;-/3I#o%n syndrome H6-2;3I!urnerJs syndrome H;-293I


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Complications

) Chronic malabsorption o nutrients and vitamins) 7steoporosis) =n ertility @ repeated miscarriages) Ris. o certain malignancies

Non-Kodg.inJs lymphoma7thers o = tract

) Ris. o developing another autoimmune disease


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#i erential #iagnosis

) =rritable bo%el syndrome) =n lammatory bo%el disease

) =ntestinal in ections) =ron de iciency anemia) Chronic atigue syndrome

) !hyroid disease) 4ating disorder


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#iagnosis o Celiac #isease

) =nde0 o suspicion) Kistory o symptoms

Symptoms7nset @ durationCharacter @ severity @ re5uencyPatterns @ timing"ggravating or alleviating actors"ny ood intolerances or lactose intolerance


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Revie% o Systems

astrointestinal "bdominal pain, bloating, gas, crampingG diarrhea,constipation, atty stoolsG %eight loss or changes

S.in Blistering rashesG une0plained contact dermatitisGecLemaG easy bruising, delayed clottingG stomatitis

Musculos.eletal Bone or Doint painG *stress+ racturesG muscleatrophyG dental de ectsG short stature

Reproductive $MPG delayed pubertyG irregular mensesGmiscarriagesG in ertilityG *menopause+G impotence

Neurological "ta0ia, neuropathiesG atigueG migrainesG nightblindness

4ndocrine Kot or cold intoleranceG dry s.inG hair loss

Psychological #epressionG atigue @ lassitudeG irritabilityG stresses,li e changes


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Pediatric Kistory

) Records rom pediatricianKistory including particularly

) Failure to thrive

) #iagnoses considered in past Pertinent labs

ro%th chart


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Family Kistory

) Celiac disease) 7ther intestinal diseases

) "utoimmune diseases) !hyroid disease) #iabetes

) enetic syndromes


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Physical

) KeightG %eightG vital signs) eneral

S.inK44N!"bdomenMusculos.eletalNeurological

ynecological


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$aboratory studies

) Blood%or."nti-tissue transglutaminase *t! + antibodies4ndomysial antibodies *4M"+#eamidated gliadin peptide *# P+ antibody"ntigliadin antibodies *" "+ not as accurate

) 4ndoscopy %ith biopsies gold standardMarsh stages 9-/

) 7ther labs as indicated by symptoms


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N=K Consensus Statement

=denti ies si0 .ey elements or managem ent&

Consultation %ith a s.illed dietitianEducation about the disease/ i elong adherence to a gluten- ree diet+denti ication and treatment o nutritional d e iciencies

Access to an advocacy groupContinuous long-term ollo% up by a multidisciplinaryteam

http&@@consensus?nih?gov@;99/@;99/Celiac#isease22


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Support rom a team is 4O

$iving %ith a chronic disease is hard

$i estyle changes are hard


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Celiac #isease !eam "pproach

!herapist@Counselor

Family@Friends

enetic Counselor

Food Services

Nutritionist

Kealth Care Providers

,tudent


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Clinical ollo%-up

) Consider the %hole patient) 7bserve or change in symptoms over time) 4valuate or possible complications o

disease) Supplement to address vitamin and

mineral de iciencies

) Follo%-up no speci ied timelineRevie% .no%ledge o celiac diseaseRe-assess lab valuesRein orce management o gluten- ree li estyle


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Patient 4ducation

) #etermine level o understanding#isease processComplications and ris.s

Bene its o ollo%ing a restrictive diet) =denti y potential barriers to optimal control

!ime constraints

Social and emotional implicationsFinancial burden o compliance

) =mplications or amily members

) luten Free $i estyle and #iet


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Support roups

) $ocal7n campus @ City @ Region

) National

Celiac #isease Foundation %%%?celiac?org !he luten =ntolerance roup %%%?gluten?net

) 7nline

National Foundation or Celiac "%areness %%%?celiaccentral?org@college Celiac #isease "%areness Campaign

%%%?celiac?nih?gov

Social media

http://www.celiac.org/http://www.gluten.net/http://www.celiaccentral.org/collegehttp://www.celiac.nih.gov/http://www.linkedin.com/in/celiacdiseasehttp://www.youtube.com/nfcaceliaccentralhttp://www.twitter.com/celiacawarenesshttp://www.facebook.com/nfceliacawarenesshttp://www.celiac.nih.gov/http://www.celiaccentral.org/collegehttp://www.gluten.net/http://www.celiac.org/


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4ducational Materials

) Selected PamphletsENavigating the gluten ree diet in college

%%%?celiaccentral?org@college

E'hat = need to .no% about celiac disease %%%?digestive?nidd.?nih?gov E luten- ree diet guide or amilies

%%%?naspghan?org

) Selected MagaLinesluten-Free $iving %%%?gluten reeliving?com

$iving 'ithout %%%?living%ithout?com

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac_ez/index.htmhttp://www.celiaccentral.org/collegehttp://www.digestive.niddk.nih.gov/http://www.naspghan.org/http://www.glutenfreeliving.com/http://www.livingwithout.com/http://digestive.niddk.nih.gov/ddiseases/pubs/celiac_ez/index.htmhttp://www.livingwithout.com/http://www.glutenfreeliving.com/http://www.naspghan.org/http://www.digestive.niddk.nih.gov/http://www.celiaccentral.org/college


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Selected Boo.s

) Celiac Disease: A Hidden Epidemic byPeter reen and Rory ones

) The First Year: Celiac Disease And LivingGluten-free by ules Shepard

) Gluten-Free Diet: A Comprehensiveesource Guide by Shelley Case

) eal Life !ith Celiac Disease by Melinda#ennis


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Nutrition 7utline

) luten ree diet *basics and hiddensources+

) Revie% o ood label@ingredient list) Sample gluten ree diet) Challenges o on-campus dining

) Kealthy gluten ree choices both on ando campus) Support groups and resources


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luten-Free #iet Basics"heat-*ree1 doe# not mean gluten *ree1

) Avoid wheat' rye' and barley) Avoid lacto#e

) Avoid oat# 2controver#ial3) Avoid other wheat or wheat containing grain#

*chec. labels+&4nriched lour, bromated lour, %heat starch, selrising lour, ca.e lour, pastry lourBulgur, durum, eincorn, emmer, arina, graham* lour+, .amut, .asha, matLo meal, semolina,smelt, triticale


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"void 7bvious Sources

) Bread) Bagels

) Ca.es) Cereal) Coo.ies

) Pasta @noodles) Pastries @pies@rolls) Beers@$ager@"les


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"void Kidden Sources o luten) Malt and malt lavorings are made rom barley) EKidden sources

Cross-contamination *during product manu acture or at home+) 7ats

Some preservatives and stabiliLers) "dditives, emulsi iers, thic.eners) EStarch

Some medications *prescription or 7!C+) ractical a#troenterology ,erie# on Celiac )i#ea#e) anuary ;99: - Plogsted, S?,

Medications and Celiac #isease - !ips From a Pharmacist ) Clan !hompson? Celiac oc6et uide# to (ver the Counter )rug#

re#cription )rug# 2 007 0083 re#pectively3

http://www.gluten.net/downloads/PracticalGastro/PlogstedArticle.pdfhttp://www.gluten.net/downloads/PracticalGastro/PlogstedArticle.pdf


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7ther Kidden Sources o luten

Some cosmetics ) $ipstic., lip balm in particular) Neutrogena ma.es about 299 gluten ree products

=nstant $ip Remedy$ip Boost =ntense Moisture $ipstic. SPF ;9$ip Boost =ntense Moisture !herapy$ip MoisturiLer SPF 28$ip Nutrition "llMoistureShine $ip loss7vernight $ip !herapy

Stamps and envelopes

) Use only stic.ers not Elic.able stamps and envelopes


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Sa e to Consume

) StarchMaltode0trin Made rom cornstarch, potatostarch, or rice starch, but not rom %heat

) >inegar and "lcohol#istilled vinegar and distilled spirits aregluten- ree, ho%ever avoid malt vinegar and

malt "everages *e?g? beer+luten ree beer is no% available

!e5uila, potato vod.a and rum are o.


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"void cross contamination

Store F supplies separately rom gluten-containingoods

#esignate certain appliances *toaster+ or use %ith

F products onlyUse clean utensils or cutting, mi0ing, coo.ing, andserving F oodsKave separate containers o butter, peanut butter,

and condiments or use s5ueeLe bottlesKave a Eno double-dipping rule#o not purchase lour or cereal rom open bins


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Processed oods that may contain gluten

) Bouillon cubes) Bro%n rice syrup) Candy) Chips@potato chips) Cold cuts, hot dogs,

salami, sausage

) Communion %a er) French ries

) ravy imitation ish) Rice mi0es) Sauces) Seasoned tortilla chips) Sel -basting tur.ey) Soups) Soy sauce) >egetables in sauce


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Sa e Flours and rains) Rice) Corn) Quinoa) "maranth) "rro%root) Buc.%heat) Montina) Fla0) obJs tears) Potatoes) $entils) Millet

) Sago) Soy) Sorghum) !apioca) !e) Cornstarch) Manioc) Flours made rom

NutsBeans!ubers$egumes


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Ma.ing gluten ree ood choices

,tic6 to plain' #imple *ood# *mostly ound in the outer aisles o the grocery store+

"ll plain meats, poultry, ish, or eggs

$egumes and nuts in all ormsCorn and rice in all orms#airy products including mil., butter, margarine, real cheese,plain yogurt"ll plain ruits or vegetables * resh, roLen, or canned+>egetable oils, including canola"ll vinegar e0cept malt vinegar"ny ood that says it is gluten- ree


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Celiac Kealthy 4ating !ips

) =mportant to ensure ade5uate B vitamins,iron and iber

'hole grain F products4nriched F products *instead o re ined,unenriched products+"lternative plant oods *amaranth, 5uinoa,

buc.%heat+F multivitamin and@or mineral supplement


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=mportance o reading labels

) !he Food "llergen $abeling and ConsumerProtection "ct *F"$CP"+ o ;99/

mandated that oods containing allergens,such as %heat, be clearly listed on label

) !his is help ul or anyone %ith %heatallergy, Celiac disease and glutenintolerance?

) Read labels and rechec. periodically asmanu acturing process can change) Ne% products introduced all o the time


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luten-Free Certi*icationrogram

) Product o the luten =ntolerant roup * = +and is a non pro it

) 40ample o an independent veri ication o

products) Products carrying the F logo meeting strict

gluten- ree standards)

FC7 is the only gluten- ree certi icationprogram in the %orld) http&@@%%%?g co?org@

http://www.gfco.org/http://www.gfco.org/


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Sample Brea. ast F #iet) rea6*a#t

) Cheesy grits and orange slices) Cream o rice %ith nuts and dried ruit added) Fruit and yogurt smoothies

) Cottage cheese %ith apples and cinnamon) 4gg, cheese and vegetable omelet %ith hash bro%n potatoes) Frittata %ith corn, egg, sour cream and cheese) Quesadillas made %ith corn tortillas illed %ith ham and

cheese) Scrambled eggs and Canadian bacon and grape ruit

sections) Crustless 5uiche

9able - www gluten net article 9he luten Free )iet: Can your patient a**ord it;


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Sample $unch@#inner F #iet) /unch


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Sample Snac.s on F #iet) ,nac6#

) Corn or potato chips *be%are o lavored chips+) Popcorn) String cheese

) !a5uitos *corn+ and salsa) Nachos) Cheese on a rice crac.er) Peanut butter on a rice ca.e) Celery stu ed %ith peanut butter or cream cheese

) #eviled eggs) ello, pudding, yogurt) Nuts) Kummus and carrot stic.s

9able - www gluten net article 9he luten Free )iet: Can your patient a**ord it;


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!he Celiac #iet ,Series < !he luten Free #iet& Can your patient a ord it( Practical astroenterology "pril ;99:G :8-


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4ating 7ut

) Restaurants$earning to interpret ingredients"s. %aitsta or che about ingredients

F items no% available at many restaurants) PF ChangJs, 7utbac. Stea.house, Sub%ay, $egal

Sea ood, 'endyJs, Chic.- il-", Boston Mar.et,Mc#onaldJs, CarrabbaJs, #ennyJs, Bone ish rill

) 'ith amily and riends4ducating *e0tended+ amily about ood choices


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!ravel

) "llergyFree Passport and lutenFree Passporthave launched the iEat#ut Gluten $ AllergenFree% application

%%%?gluten reepassport?com

) i hone= and i od> touch u#er#instant access to sa e eating out around the corner romtheir homes or around the %orld

) "merican Celiac #isease "lliance %%%?americanceliac?org

) Celiac !ravel *restaurant cards+ %%%?celiactravel?com

http://www.glutenfreepassport.com/http://www.glutenfreepassport.com/


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"dditional 'eb Resources

) "merican Celiac #isease "lliance %%%?americanceliac?org

) Celiac Sprue "ssociation %%%?csaceliacs?in o

) ChildrenJs #igestive Kealth and NutritionFoundation %%%?cdhn ?org

) Medline Plus %%%?nlm?nih?gov@medlineplus@celiacdisease


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Coo.boo.s and Recipes

) Selected Coo.boo.sThe Essential Gluten-free Grocer& GuideGluten-free 'a(ing Classics by "nnalise RobertsGluten-free Diet by Shelley Case

The Gluten-free Gourmet Coo(s Fast and Health& by Bette KagmanGluten-free #n A )hoestring by Nicole Kunn *also %eb-site+The Health& Gluten-free Life by !ammy Credicott*heat-free+ Gluten-free Coo("oo( for ,ids and 'us& Adults byConnie SarrosThe ./ 'est Gluten-free ecipes by #onna 'ashburn

) Selected 7nline Recipes %%%?gluten?net@recipe-database?asp0

%%%?simplygluten- ree?com


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Case Presentation

) 2< y?o? emale incoming irst year student) Kealth Form

Keight /J 22'eight ? !8 pound#

) 40pected %t? A/ pounds

Calculated BM= $ 7) 40pected BM= 2A

) Concern - ( "nore0ia ( 7ther etiology) Plan

Call student to ma.e appointment pre-arrival


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Kistory per PCP

) =s Tper ectly healthyE) E#oes not have any eating issues

=s vegetarian by religion

) No = symptoms

N>#, abdominal pain, appetite issues) Kas normal menses) Speci ically no clinical indication o

Crohn s, Ulcerative Colitis, =B# or Celiac #isease

) !F!s normal) No record o bone density, 4 , postural vital signs or =

%or.up


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Kistory ta.en in our o ice

) 4valuation at age : or E ailure to thrive) ood eater al%ays struggled to gain

) $oves ood) 4nDoys e0ercise


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Kistory *continued+

) Meds& multivitamin) "llergies& N #") PMK&

29 days early or birthG birth %eight 8?8 lbs

!halassemia trait) 40ercise& one hour@day) R7S& negative or eeling cold, headache, dental caries, body

aches, arthralgias, nausea, diarrhea, vomiting, bloating,

abdominal pain) Menarche& age 28) Monthly cycles last 8 - days no missed periods


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Family and Social Kistory

) #ad& age 89 8J/ tall diabetes) Mom& age /A 8J;?8 tall no medical

problems

) FK& heart disease@K!N paternalgrandparents

) SK& rare 4t7KG no cigarettes or drugs

No depression or thoughts o sel harmKas %anted to gain %eight all li e40cited to be at Bentley


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Physical 40am

) !& A


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$abs

) CBC, Platelets V #i erential!halassemia trait ound all else normal

) Chem ; Panel @ !SKNormal chemistriesNormal !SK

) t! "b, =g"W299 U@ml *negative X8, positive W


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Bone #ensity


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Plan

) Re erral to astroenterology4ndoscopy and biopsy Marsh 6

) Re erral to Nutrition

luten Free #iet) Re erral to Counseling) Re erral to 4ndocrine

4valuation o osteoporosis @ osteopeniaCalcium and >itamin # supplementation

) Regular Follo% up


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" ter 7ne Oear

Augu#t008

@une00

,eptember00 (A/

'eight < 'eight :; "eight B 7 5 "eight B 4

BM= 26?: BM= 2/?8 + B $4 ! + B $

t! 299 t! 8< t9 B 50 t9 B 0 - 8


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=ssues

) #ecision to discontinue medical visits) Started mega vitamin therapy on o%n) Continued intensive program o cultural dancing

several hours per day


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Four Oears $ater

) raduated moved bac. to home country) Kad continued to loosely adhere to diet) Possible small %eight gain noted be ore she le t) Reported that amily members all tested negative

or celiac) 'as advised to ollo% up %ith physician at home

or repeat bone density and t! and cautionedre& potential long term e ects o inade5uatedietary control


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Considerations

) Ko% do %e %or. %ithin conte0t o illness %hichmay not be understood in another culture() Ko% do %e deal %ith parents %ho do not believe

the diagnosis and the con lict bet%een theparental recommendations %hich are di erent

rom the medical recommendations() Ko% do %e separate the concerns o over-

e0ercise or possible eating issues rom celiacdisease() 'ithout any symptoms a ter ingestion o %heat

%hat is the incentive or a patient to strictly adhereto dietary recommendations(


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!he Future o Celiac #isease

) =ncreasing a%areness among cliniciansCeliac "%areness Campaign %%%?celiac?nih?gov

) E=s Oour Patient !he 7ne() Provider Points

) Celiac #isease Ne%s *electronic ne%sletter+

) =ncreasing a%areness o the general public!a0 deduction or e0cess cost o ood

Media e0posureMay is Celiac #isease "%areness Month*in some states+

C l b i


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CelebratingCeliac #isease "%areness Month


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Questions(

!han. you

Contact in ormation&Marty Reuman Pieper mpieperYbentley?eduerri !aylor gtaylorYbentley?edu

where is the wheat

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