Gluten Free East Tennessee - 2019 Survey Part 2 GLUTEN FREE In EAST TENNESSEE RESTAURANTS and DINING OUT Please nte: This is NOT a scientific survey. The respnses are the OPINIONS ONLY f the participants sme summary pints by the authr. The survey s intentin was t get a cursry view f perceptins f gluten free (GF) living in ur cmmunity. We had a 40% respnse rate t the survey! As a percent f respndents, it s huge! That als means we had 40 respnses frm ur grup f 100 - s it wuld likely be cnsidered very small sample as far as yur general survey participants are cnsidered. The results are intended t d a few things: T let the respndents knw they are nt alne and/r give them an pprtunity t see hw similar r vastly different they may feel frm their GF peers here in ur cmmunity. The results may shape what the GF ppulatin f East Tennessee may need and want t make this lifestyle mre manageable, enjyable and successful.
Survey Results: YOUR THOUGHTS and FEELINGS n dining ut in ur area. Let s be hnest. Dining ut is a crap sht, a pain the behind, a rll f the dice We all have ur wn persnal ways f attempting t dine ut. Sme peple never dine ut, but sme dine ut all f the time. Even with ur restrictive lifestyle, dining ut is still a very regular activity, whether it s ur ld habits and desires, r that f family and friends, and that likely makes it a challenge. We certainly want t keep sme sense f nrmalcy in ur lives, s we pursue this activity. Sme will research t the ends f the earth, sme may just wing it and hpe fr the best, but n matter what end f the spectrum we are n, there is never any guarantee ur experience will be cmpletely safe and enjyable.
We are experiencing (what we reprted as) suspected gluten expsure at an UNACCEPTABLE (annual) rate Nte: One persn with CD stated they get glutened 20 times a year, while ne in the Other categry stated 37 glutenings in a year s time. These exceptinally high scres skewed the data t 4.28 times a year n average fr CD and 7.4 times a year fr Other, s the fllwing graph reflects the grup withut these scres. Wh thinks this is a BIG prblem? Wh bears the respnsibility fr these glutenings? Are we letting urselves dwn r are restaurants letting us dwn? If it is us persnally, is it really wrth taking a chance after yu have wrked s hard t stay cmpliant and heal, t und all the gd yu have dne? Of curse the best answer is n, but can be different fr everyne (and remember, we had peple in Part 1 wh admitted t cheating). We knw gluten can be very damaging and can adversely affect us in many uncmfrtable ways. The time it takes and ur wn bdy s ability t repair that damage isn t clearly knwn. Studies are beginning but that is dependent n the severity f ne s cnditin and/r health status. We all get tired f cking fr urselves, reading labels, saying n, and s n. Dining ut can be a treat fr sme, but an anxiety-ridden experience fr thers. It can impede ur scial life, but als be very difficult t avid fr many reasns. S let s take a lk at hw we view restaurants.
Pr Excellent Overall, hw d we really feel abut restaurants? Please nte, these results are likely skewed, due t several factrs. A rating f 5 (Excellent) may be the result f eating at ne f ur dedicated GF bakeries in the area, while 1 (Pr) culd be due t taking a chance and hping fr the best in a place nt really set up well t handle GF. Celiac Disease Gluten Sensitivity Other Overall, and n surprise t really anyne, it appears as thugh restaurants culd make sme imprvements! Just lking at the ttal scres, we are lking at a C average here, if that. Nwadays, it seems like everyne knws smene wh is GF fr reasns ther than it being a fad. Hpefully, the days f eye-rlling and judging are behind us, but there s still a lng way t g. Knwledgable staff likely determines all f the ther factrs we rated: If smene is nt knwledgable n GF, hw can ne knw hw t be careful and helpful? With knwledge, hpefully cmes the cycle f awareness, and with awareness, a sense f serving the needs f the client: GF menus, helpfulness and carefulness.
It is Just Really Frustrating t Dine Out Dining ut can already be an anxius experience, and speaking frm persnal experience, affects the entire party at a restaurant. Regardless f hw hard I try t be discreet, thers can sense my anxiety frm my behavir: Asking the same questin a few different ways if I dn t think the server understd My lack f cnfidence and trust when I m tld, I dn t see why that wuld have gluten in it. I m pretty sure that s gluten free. And even, There s n sy in that. Requesting they write gluten free all ver my rder s the kitchen knws Wndering what is happening in the kitchen that I cannt see Scrutinizing and cntinuing t ask questins abut the fd even after it is put in frnt f me Lking at the clck with my first bite, and adding tw hurs, which either indicates success r failure. Wuld it help fr restaurants t understand that it s nt just ne diner but an entire family r grup that can be alienated with a bad experience? In my wrld, if a trip t a restaurant becmes an anxietyfilled experience r wrse yet, I end up glutened, as a grup, we vw t never set ft in that establishment again. S it s nt just me, but at least five thers they lst. Althugh we have a very small circle f places we will dine at anymre, many times, we just pt t ck extra-special at hme, since the restaurant experience just isn t wrth the effrt - r stress. When yu expressed yur frustratins, it s pretty clear we are all n the same page. Fr specific cmments, please see page 10
We all likely have bth gd and bad stries with ur dining experiences. In defense f servers, they are busy peple, and they aren t ignrant, they may just lack prper educatin and pssibly the cmmitment f the management. Everyne in the restaurant wh has smething t d with yur rder needs t better understand fd intlerances and dietary restrictins. When yu ffered ur suggestins n what we thugh restaurants culd d better, it verwhelmingly came dwn t three categries. Fr specific cmments, please see page 11. Every nw and then, yu just might get a staff member wh knws smene with celiac, gluten sensitivity r ther autimmune disease and understand that with dietary restrictins, n amunt is safe. In these instances, yu may feel like yu are in pretty gd hands. One thing is certain: Autimmune disease and fd intlerances are n the rise at a recrd pace. The restaurants willing t address it nw may be best suited t deal with the influx in the near future. It s nt if, but when.
We all seem t be in agreement that there s a tn f educatin that needs t be dne. Nt just ne training sessin, nt just servers, but educatin fr ALL wh are respnsible fr putting the fd n the table. And with the staff turnver, recipe changes, prduct changes and mre, it cntinues t add mre cmplexity t an already cmplex business. T ffer up a few areas fr restaurants t evaluate fr safety and enjyment, this culd include: Kitchen prcesses - Are glves being changed and separate prep areas being designated? What abut using separate utensils, cutting bards, fryers, tasters, grills, and/r any ther equipment that culd be a surce f hidden gluten? Ordering the ingredients - Are the packaging and manufacturing statements diligently being lking at the n a regular basis? What abut a change t the menu r a new recipe? Des the rdering system have an allergy designatin r ther way f cmmunicating with the kitchen? Make every aspect enjyable - Offer smething (even carrt and celery sticks!) when bread is served at the beginning f a meal t allw the persn a little inclusin. We are hungry peple t! What if the training were t ccur early in the careers f thse in the fd service industry? I had the very unique experience last fall f wrking with Michelle Williams f Ttality Living Well fr a day last fall, presenting t and wrking with a new grup f aspiring chefs at the UT Culinary Institute. First f all, kuds t Chef Greg Eisele fr caring enugh t dedicate an entire class perid t educating the students abut gluten free and healthy eating. The students were genuinely interested in understanding hw peple with dietary restrictins have t deal with dining ut, and what it means t keep peple safe when it cmes t gluten. Wrking in the kitchen with them was a fantastic experience - they were super-inquisitive and verified ingredients, especially packages with manufacturing warnings and mre. I talked a lt abut crss cntaminatin, and at the end f the class, they all shared their take-aways frm the day. The cmment that stuck ut the mst t me was the student wh mentined he didn t realize that crss cntaminatin can happen frm airbrne flur. It s the little things that smetimes can make all the difference. Perhaps these new chefs will land at a few places that we can all feel safe at. And, we can hpe that culinary schls will g a bit mre in depth when it cmes t allergen and dietary restrictin educatin. One can hpe, right? Regardless, we have t keep n ur tes, and d what we d t keep urselves safe.
Hw can we manage dining ut and still stay safe? When asked hw yu decide where t dine ut, yu ffered up sme great inf: Sme Strategies fr Dining Out Gluten Free Dn t wing it! Cme up with a plan t increase yur chances f success. Here are a few strategies t cnsider as yu decide where t dine ut: Cllect a list f places everyne wants t eat at then start yur hmewrk Use an App that reviews restaurants, r search the internet Gluten Free Restaurants in [City] r [Name f Restaurant] [City] Gluten Free if it a particular restaurant yu are interested in desn t shw up in yur initial search. Dig arund the restaurant s website - they may r may nt ntate their allergen prcess See what thers have said abut dining there specific t gluten free and/r celiac Sme resurces culd be Find Me Gluten Free, Trip Advisr, Open Table, Yelp and mre Be sure t pay attentin t the dates reviews were written, lcatin rated, prgress and changes (a restaurant may have imprved r declined ver time) Call r email the restaurant t inquire abut menus, kitchen prcedures fr crss cntaminatin, shared fryers, etc. Cntact the restaurant ahead f time and alert them f yur needs. Sme nline reservatin systems will let yu add ntes t yur reservatin, s cnsider smething like: One f the diners in the party MUST be Gluten Free When yu arrive, ask the hst t seat yu with a server that understands dietary restrictins, especially gluten free. Dine at less busy times Ask fr the chef r manager if yu have any questins and ask as many questins as it takes t help yu decide/feel cmfrtable. An establishment s willingness t help r lack theref shuld be a gd indicatr n whether r nt t cnsider dining there. Have a cnstant dialgue with yur server. It may help t begin the cnversatin with: I m s srry fr being s high maintenance. I get really sick if I ingest gluten. Wuld yu be s kind t help me t stay safe? Ask abut Menu AND Kitchen Prcess AND t ntate yur rder Gluten Free G last when rdering t minimize disruptin and get the time yu need t assess the ptins and ask questins Trust yur instincts! If yu dn t feel right abut smething, dn t rder. Dn t take a chance. Eat smething at hme t stay safe, but still be included in the grup, in the event yu end up nt rdering anything. Find trusted restaurants and cnsider a dining just few times a year at better places vs many times at average places - but still g thrugh the vetting prcess t assess any changes since yur last visit. Write reviews and send emails bth gd and bad. Many restaurants take this very seriusly! Understand that despite yur effrts, there are n guarantees yu will have a successful experience.
List the Restaurants Yu Persnally Mentined Yu Are Mst Cmfrtable With When asked t list the restaurants yu are all mst cmfrtable with, the cnfidence level likely varies by many factrs, but especially grup (CD, GS, Other). Befre getting t excited abut the list, please understand - Sme f yu may agree with yur peers, but thers may als vehemently disagree with sme f the establishments n this list. (Persnally, I have been glutened at a few f these places). Peple s successes are likely dependent n a number f factrs that were NOT plled r evaluated, including their frequency f dining at any given place, the timing f their visit, hw lng ag they were there, the lcatin f the establishment, what they rdered, the staff n duty at the time they dined, and s n. Restaurant plicies, prcedures and ingredient surcing can change frequently and withut ntice, s always be diligent and prceed at yur wn risk!
In summary, dining ut is nt an easy task fr peple with fd intlerances r allergies. Sme places take it seriusly, sme nt as much. The burden is clearly n us t make sure we d ur hmewrk, and even then, have t make n-the-spt decisins n whether we actually rder/eat while at a restaurant r nt. Awareness f gluten free beynd that f it being a fad will likely be a lng prcess. Let s hpe East Tennessee establishments take it up several levels t where we can be an example f gluten free dne right in the US! When it cmes t dining FRUSTRATIONS, in yur wn wrds: Nt enugh chices. Uninfrmed r untrained emplyees. Lcating GF restaurants, especially lcally, available selectins, and trusting that fd is prepared crrectly. Trusting new places. Lack f knwledge and imprtance f the severity f Celiac Disease. Lack f menu items The lack f knwledge f servers, and the limited menu items available. Unknwledgeable waiters r chefs. Unknwledgeable staff Nt being taken seriusly, crss cntaminatin Can yu PLEASE ffer us a safe alternative t bread s we can have smething t eat while everyne else is eating bread? It s awful t just sit there and watch everyne else eat the ne thing I miss s much. Nt ever being able t The lack f peple taking yu seriusly Staff having n clue what gluten even is The nt knwing what is happening in the kitchen Staff wh dn t understand what gluten-free is I d nt have celiac disease and d nt wrry abut crss cntaminatin. Hwever, if I had celiac I think eating ut wuld be a nightmare because I think very few restaurants truly pay attentin t this. Peple just plain lying abut what is r isn't in the fd. Yu can tell they are just trying t get yur rder & mve n. They wuld be mre sensitive if it were their child that were ging t be sick. I dn t want a salad! Limited GF menus, staff lacking knwledge Lack f chices Nt knwing what is really in the fd and whether r nt crss cntaminatin is happening r nt. I'm nt super sensitive like a celiac, but still. Limited chices When they say things like It shuld be gluten free then get annyed when I ask fr them t clarify with the chef As previusly mentined, because we eat at the same places mst f the time, there aren't really any frustratins. But, when we g smewhere new r g n vacatin and eat ut, my biggest frustratins stem frm either nt having a lt f ptins, the staff nt being knwledgeable abut what is and isn't GF, r the cmplete lack f ptins. The last ne desn't happen ften, but when it des, it's quite disappinting. The attitude f the waitress r waiter and the chices. Yu are nt GF friendly if yu nly ffer a salad ptin. Fd quality (nt rganic, pr meat quality, etc.) Crss Cntaminatin. They may say certain fds are safe until yu read the fine print and it says cked with all ther allergens. Being afraid there wn t be anything I can eat. Lack f inf n the menu Stupid ppl wh dn't get it. N GF ptins Staff thinks it is a jke, dn t take me seriusly bc they say h yu lk healthy, yu re s pretty and thin. I wish I lked like yu when i state I cannt have gluten dairy r any refined sugar. I have t always say lk I have t eat this way, it s nt a fad diet, please
Peple assume gluten free menu is an allergy menu. I knw this is a gluten survey but there are ther allergies. But staff that think it s a chice r nt a real allergy r intlerance t gluten is als prblematic Yu never knw if there are crss-cntaminatin issues in the kitchen. Nt having a knwledgeable staff n crss cntaminatin r allergies in general. When a restaurant is nt clear n what is k/what's nt - need gluten free ptins fr the bread at the beginning What d we think restaurants can d t MAKE IT BETTER? Mre training! Offering mre ptins! When eating ut the nly thing they give yu while yu wait fr yur entree is bread and it's nt gluten free. Educate staff, fllw prper preparatin prcedures, prvide better selectins. Understanding crss cntaminatin. Better training f staff. I'm surprised by the number f peple wh think gluten-free means dairy-free r vegetarian. having mre things n the menu Emplyees being taught what gluten is ( besides bread) and what crss cntaminatin is. Training fr staff. A GF menu with mre n it than just salad. Inf n their gluten free fds and prcedures mre readily available. Having ptins and a separate area with peple wh knw what they are ding. Have separate spaces t prepare ur fd, train their staff that mst ften this diet isn t a chice Train staff and have separate areas t prepare fd Prperly train their staff. My brther in law wrks at a restaurant and everything he learned abut gluten he learned frm me. He shared the inf with his manager wh was als unaware f crss cntaminatin issues. Mre ptins and GF fryers Have a gluten-free menu Training f staff regarding crss cntaminatin Learn the ingredients f their fds. Educate & test their staff regularly n ingredients. Training servers better Clear menus Having mre ptins and careful training f their staff t the dangers f crss cntaminatin. Really cracking dwn n the crss cntaminatin Train their staff t be mre knwledgeable abut what being GF means fr a persn and knwing the menu and which ptins there are if they are nt clearly marked. Having mre ptins; sme restaurants d a great jb f this but I have been t sme where yu are limited t abut five chices. Nt up-charging s much fr GF ptins (example: a GF pizza crust in sme places adds anywhere frm $3-$5). Having a separate cking area fr GF fds. Have the manager cme ut and speak t yu and persnally make sure yur fd is handled crrectly; Wild Wing Cafe des this and I've never nce had an issue getting sick while eating there. Use the same menu and dente GF chices, prvide mre GF chices, train staff t understand GF needs. Mre training Have a slightly bigger chice list and keep a sectin f their kitchen fr fd allergy custmers. Mre chices, better descriptins n menus Better menus, flexibility f changing t leave ff marinades etc.. simple sides Train emplyees, have separate menus and the menus are sitting ut (dn t have t request frm smene) Mre tasty ptins
Mark the menu and list all the ingredients in the dish. Have a dedicated kitchen space, knwledge n allergies, crss cntaminatin educatin Clear infrmatin n menus/websites Watch fr upcming reprts: Part 1: Wh, Why and Hw We Are Ding Part 2: Restaurants and Dining Out Part 3: Medical Cmmunity Part 4: GF at Hme Abut the authr: Julie Mrrisn is a gluten free ckbk authr (Survive & Thrive Gluten Free) and blgger (gluten-free-way.cm). With 10 years f real gluten free living experience as a result f celiac disease, she is determined t make gluten free living and transitins easier, healthier and happier.