September 16, 2025 • 37 mins
This week on Don’t Feed the Fear, I’m joined by Kendra Williams, who lives with celiac disease and has a gluten detection dog Suki trained to keep her safe. In this conversation, we talk about when a food allergy detection dog is a good fit, the role Suki plays in daily life, and how this unique partnership has reduced anxiety and increased her confidence in navigating a gluten-filled world. We also dive into the importance of finding community—both online and in-person—for support and encouragement.
Follow Kendra and Suki @sukipwd
HOME | Celiac Service Dogs
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com
Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker (00:01):
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence..
(00:22):
Welcome back to Don't Feed TheFear.
Today, I'm so excited to bejoined by an incredible guest
who brings a very special andadorable partner with her
everywhere she goes.
Kendra Williams is here to talkabout life with her gluten
detection dog Suki.
Together they navigate life withceliac disease in a way that is
empowering and eyeopening.
We'll be talking about what it'slike to live with Celiac, how
(00:43):
her dog helps her stay safe.
The pros and the challenges ofhaving a gluten detection dog
and the ways that she has foundstrength in community in the
process.
Amanda Whitehouse (00:52):
Kendra, thank you so much for coming to talk
to me here on Don't Feed theFear about Your Life with Celiac
and your Sweet Dog Suki.
Kendra Williams (00:59):
Well, thank you.
It's great to be here, Amanda.
Amanda Whitehouse (01:01):
Yeah, I'm excited to talk to you.
I, am new to Instagram, butyours is one of the first
accounts that I found becauseobviously cuteness factor.
But it's also so interestingwatching, how different your
life is managing, your celiacthan the rest of us who have
some kind of a food allergic,disease.
Did your account grow reallyquickly once you started sharing
about that?
Kendra Williams (01:21):
Yeah, I think, I mean, it started off where I
started my account just to shareabout.
My training process of trainingthis gluten detection dog, and
it was something fun to doduring the lockdowns of the
pandemic.
So I started it in 2020, rightafter I got Suki and my gluten
detection dog, and she was justa puppy, so I was sharing cute
(01:43):
puppy photos and stuff likethat.
But then as it grew, like then Irealized, oh, this is a bit more
than just me having this littlecute little dog account.
It's really me connecting withpeople.
Like me that are dealing withceliac disease.
And so it did, you know, then itgrew slow and steady.
(02:03):
I mean, I think that's the goodway to grow when you have
organic followers.
Like it wasn't this hugeovernight.
Um, so I've been doing it nowfor five years, so it's pretty
consistently over time growing
Amanda Whitehouse (02:18):
Tell me about Portuguese water dogs.
I don't know a lot aboutdifferent breeds of dogs because
we are allergic in my house.
Kendra Williams (02:23):
Oh well, Portuguese water dogs.
Um, I don't necessarilyrecommend them to be gluten
detection dogs or service dogsbecause they are a.
Really smart, very high demanddog.
So they require a bit more work.
But they were bred to work thefishing boats in Portugal.
They don't shed, they have acoat that grows.
(02:44):
Continuously.
So they require grooming, butbecause they would work
independently where they wouldferry nuts and buoys and mail
between boats, fishing boats,they are bred to work very
independently, which sometimesis a challenge in training for
service work because you have toget them on board just like you
(03:05):
do with a child, sometimes youget a little bit older kid,
they're like, oh, just'cause Isaid, so that's not a reason.
So you have to go, Hey, here'swhy we're doing this and here's
why it's a good idea for you.
So that's why I don't recommendher.
They're, they're a fabulousbreed, though.
They don't shed, I also haveallergies, she does not bother
me, but, not everybody is, Isable to tolerate dogs.
(03:27):
So she's, she's super smart andshe's my second dog.
The most famous Portuguese waterdogs, um, were in the White
House under the Obamas.
So Bo was the, the first, thefirst dog, the first Portuguese
water dog in the White House.
And then their other dog, Iforget what her name was, it was
a girl like Sunny, maybe.
Amanda Whitehouse (03:46):
So how did you end up picking that breed
after what you just described
Kendra Williams (03:50):
I had a Portuguese water dog before, so
if you've had a Portuguese waterdog, you get it.
And they're kind of a specialbreed.
So I, I was looking at getting adog and was kind of researching
breeds, and then I realized.
Um, I think originally I waslooking at maybe getting a
standard poodle.
So, so really good breeds wouldbe like standard poodle lab, um,
(04:14):
golden.
Those tend to be like the mostconsistent service dog breeds.
Um, and so I, I can't haveshedding dogs, so I was like,
maybe I'll get a standardpoodle, but I thought if I'm
getting that big of a dog, Ishould just get a Portuguese
water dog.
And because I love the breed andthey're, they're really special
to me.
And that's how I decided to, todo it.
(04:37):
Although I went about itcompletely wrong.
It was more of a whim.
And thankfully I knew enoughabout it.
But now that having gone throughservice org training and making
tons of mistakes, um, I don'twant people to make those
mistakes.
So I put together some courseswith a gluten detection trainer,
(04:58):
um, that walk you through, likeif you're thinking about it.
Don't just do what I did andjump right in and go, let me get
a dog and then figure the restof the stuff out that is setting
you up for failure.
And it also might set you upfor, some bad mistakes along the
way.
So we have a course that talksthrough like what breed is the
(05:18):
right breed for you and based onwhat your needs are.
Some people might have multipletasks that they have to do.
So like if you had, a mobilityalert, a mobility support.
Plus an allergen or or glutendetection dog.
That would be one where youlive, what type of family, your
lifestyle, like can you have asheddting dog or not?
(05:40):
Are you willing to put up withgrooming?
We go through all that in thefirst course and the second
course we go through.
You know how to find a breeder,what breeders are, right?
There's a lot of breeders outthere that are doing it for the
money, and they're promisingthings that are not true, and in
a service dog environment, youwant.
(06:00):
The right characteristics.
You want good health and thosekind of things.
If you're working with a breederthat really is a heritage
breeder that's very concernedabout that and is doing testing,
and then they're also doingthings with the puppies to get
them, they're doing early centintroduction, early neurological
stimulation, that's superimportant for service dog work.
(06:23):
And then how to select withinthe litter, what's the right
puppy.
So we go through all that in thecourse, and then we have.
Some other courses that go morein detail about the gluten
detection process, but anybodythat's thinking about getting a
service dog, allergen or glutendetection.
I highly recommend it before youdo it.
There are 30 minute videos withhandbooks.
(06:44):
Really, really good to let yougo, okay, is this good for me
and when can I do it?
Because a lot of people go,well, I want it for my child.
But my child is young and youknow, but I want it when they're
a teenager.
Well, how can you plan for thatand for getting a dog, the right
dog and stuff like that?
Sometimes it takes a year to twoyears, especially really good
(07:06):
breeders.
So I have to be thinking for thefuture, like, is that gonna
work?
Is that not gonna work for me?
Um, and what that looks like.
Amanda Whitehouse (07:14):
Yeah, there's a lot to it all lining up in the
right way,
Kendra Williams (07:17):
Yes.
Amanda Whitehouse (07:18):
as you said is not how you did it.
Oh, I wanna ask about that.
But first, while we're on thetopic, can you tell people where
they can find those courses?
Kendra Williams (07:24):
Yeah.
Celiac service dogs.com.
Amanda Whitehouse (07:27):
Okay.
Um, so you didn't do it thatway.
Was this your, like, instead ofsourdough bread, because
obviously you're have celiac, isthat, was this your COVID
Kendra Williams (07:36):
it kind of was, well, I travel a lot for work
and that was one of the issuesfor me when I,
Amanda Whitehouse (07:42):
I.
Kendra Williams (07:42):
uh, was diagnosed was like, how do I
travel?
And I, I figured out really goodmethods to travel, but you know,
you'd go out to client dinners,you'd go places where you had no
control over meals, and I wouldjust sit there in fear.
And not eating because you'rethere for work.
You can't be incapacitated fordays because you got gluten and
(08:06):
it just, and then I would go outpersonally and I would get sick
often, And my last meal beforethe lockdown, I went and met
some friends for breakfast and Isaid, you know what?
I'm not eating, but I'm gonnahave tea.
I'm gonna have tea, kombucha,and water.
I got glutened.
Don't know how, but I gotglutened and, and you know, and
(08:27):
it wasn't terrible.
It was like cross contamination.
But I mean, by the time I gothome I was super bloated and I
felt just terrible.
And you know, I had joint achesthe next day and I'm like, this
is just wrong.
So that was the triggering pointof it.
When everything shut down, I'mlike, well, I'm not traveling so
I can.
(08:47):
Get a dog and I had a dog whowas 16, so I knew he wasn't
gonna be around that muchlonger.
There's just so much going on atthat point in life that I
thought I can't deal with my dogdying and the world being so
crazy there was just too manyother things.
But that was all the impetus.
(09:08):
Well, I have time.
I'm not traveling.
My work was slow.
And so I'm like, you know what?
Now or never, I didn't realize,I mean, thankfully I was home
for a long time, so, but at thepoint I didn't really realize
how long it was.
So that was in March and she wasborn March 27th.
(09:28):
And then I went up and I got herMay, May 31st, 2020.
So, and she came home and shewas just a little, a little
girl, just a tiny, tiny, tinybaby.
My other dog was a nine and ahalf pound bichon.
And she was the same size ashim, so she was little bitty,
(09:51):
maybe a little smaller.
So, and now she's a 50 poundgirl.
Amanda Whitehouse (09:54):
So how long did it take then for her to be
ready?
You said it can be a year, twoyear
Kendra Williams (10:00):
it's a two year process to train a dog.
There's a lot of people outthere that.
Are selling dogs that arefinished at six months.
They're taking your money.
And I hear, I've heard it from alot of those people that are
heartbroken, they've spent 10,$15,000 and ended up with
nothing.
So that's, so, takes two yearsof the process and then you also
(10:20):
wanna make sure the dog is fullymatured.
They need to go through alltheir fear periods because it's
not just the gluten part of itor the allergen part of it.
That's a huge part of it.
And that does take time.
And it's very different fromlike other scent work.
So if you had a bomb detectionor an agricultural detection,
(10:41):
you know, the dogs at theairport.
Right.
They're sniffing for somethingthat is stationary or you know,
they, they get it and it's, andit's a single item and so they a
bomb.
And it's also the odors arestronger and they're multiple,
right.
So it's, it's, it's largequantities in general.
(11:03):
Um, and for medical alert, likea diabetes or smelling low blood
sugar.
High blood sugar, that floatsthrough the air very well.
So it's.
Easier for the dog to catchGluten is very heavy, so it's
really hard for them to capture.
It doesn't really go as airborneas other scents like, like low
(11:23):
blood sugar, you know, your bodyscent and
Amanda Whitehouse (11:26):
emitting from your whole body, I would assume
too.
Kendra Williams (11:29):
The dogs have to know down to cross contact,
which is trace amounts ofgluten.
Amanda Whitehouse (11:34):
right?
Kendra Williams (11:34):
have to work not only identifying the scent,
like in a large quantity all theway down to trace amounts, but
mixed in with other things.
So mixed in with plates of foodmixed through packages, um, and,
and on all those differentareas.
So that's, and, and, you know,liquids and so different mediums
(11:56):
and then they need to know it.
Not only at home, but in thegrocery store, in, in the
restaurant, and you know,wherever you are.
And all that adds to the levelof difficulty.
So you have the, the scent partis a big part, and then you also
have the public access part.
So the dog has to be properlybehaved and they have to know
(12:18):
how to.
Settle.
So that's the other part too.
A a gluten or an allergendetection.
They work really short periodsof time.
If I'm going out to dinner,she's gonna check my plate for a
minute.
And then she's gotta be sleepingunderneath the table
Amanda Whitehouse (12:34):
Mm-hmm.
Kendra Williams (12:35):
everything going around, including the
stuff that's falling on thefloor, the people walking by,
you know, the people stepping onher ta, all that kind of stuff.
So those are all pieces that youhave to train for.
Um, everything in between, youknow, riding, public transport,
riding in, in cars, all thatkind of stuff.
(12:56):
And the other part is you need atrainer that understands cross
contact and stuff like that.
And a lot of dog trainer, unlessyou have celiac disease or you
have a food allergy, you don'tget that.
You don't understand it.
And I have a video on, on ourwebsite in celiac Service doc, a
big gal that worked with atrainer and the trainer was
calling her to ask her what wasgluten and what products contain
(13:19):
gluten.
It's a serious medicalcondition.
So it's really important.
It's not just a, Hey, I trainedthis dog to pick up the keys,
which is incredibly importanttask.
But if they don't get the keysto you on the first try, they
can try a few more times.
If your dog tells you, Hey,there's no gluten and there is
(13:41):
gluten, and they're dogs, sothey can make mistakes, I mean.
They can make mistakes, but Ihave a, I have a very high level
of trust in Suki and Iunderstand her body language.
And then I just have to bepatient too, that are, there's
gonna be times when I'm like,Hmm, I don't know about that.
I'll put the plate aside andhave her do something else and
then have her check again.
Amanda Whitehouse (14:03):
What's her track record?
Kendra Williams (14:04):
For me eating, she does really well, she makes
mistakes, but as far as when itcounts.
She doesn't, so I don't, I don'tget gluten, you know, that
doesn't mean that I won't.
But she, she, she keeps me safefor sure.
Now when we practice too, wehave maintenance where we're
doing stuff on the regular andthere's times when I'm like,
(14:26):
okay, he really didn't checkthat or you got that one wrong.
So, so, but it's part, that'spart of why we practice.
And then I know, and then itkeeps that scent also fresh in
her nose.
Amanda Whitehouse (14:36):
Could you talk about what life was like
before and how this has changed?
Obviously you're not gettinggluten as much and feeling
better, but I'm sure there's somuch more to it than that.
Kendra Williams (14:46):
Yeah.
The biggest thing is a mentalrelief.
So I did not realize until afterI had trained her how much going
to going out to eat.
I.
I had this, you know, feeling ofanxiety sitting there looking at
the plate going.
(15:06):
Yeah.
And most times I would, Iremember like having a dialogue
in my head, it's 50 50.
If this is gonna make me sick,it's 50 50.
If I'm not gonna be able tofinish this evening, um, you
know.
Or that I'm gonna have to leaveearly, or I'm gonna spend, you
know, time in the bathroombefore I even make it home, or,
(15:27):
you know, and then I'm gonna belaying in bed with chills and
body aches and brain fog and I'mgonna be sick for two weeks.
So that's, that was a huge deal.
I did not realize the mentalrelief that she gives me.
The all clear then I can.
Heartily have this relief that Ican eat it and actually enjoy
(15:50):
what I'm eating and not sitthere and worry.
Um, the other part is, is I wasfearful of a lot of things and I
would choose not to even ventureto eat things that might be, you
know, technically, naturally.
Naturally gluten free, but you'dgo, oh, cross contact.
(16:11):
And maybe, you know, I'll giveyou an example.
Like Costco rotisserie chicken.
I would never have bought Costcorotisserie chicken'cause I'm
like, cross contact.
That's gotta be a mess.
She always clears it.
And um, you know, and it, I'vehad no issues with it, but that
would be something that Iwould've.
A hundred percent avoided andnow it's something I buy
(16:32):
regularly and have never had anissue with it.
Um, so things like that, butfood also in, in restaurants and
things like that, it alsobrought out to me, um, because I
don't want that awkwardembarrassment of, hey.
She alerted to the food.
And you have, I mean, I, you dohave to deal with that.
(16:54):
Um, that I need to up my game interms of making sure that I'm
advocating for good food.
So safe food that I'm asking thequestions at the restaurant.
I think early in my diagnosis,so I was diagnosed in 2017, so I
got her a few years afterdiagnosis.
And I think a lot of people.
Feel this way is that it's like,I don't wanna take up space.
(17:17):
I don't want to be a bother.
'cause it's awkward and we'renot used to that.
And um, I always encouragepeople, you have to take up
space'cause your health is soimportant.
I mean, if you had, uh, youknow, a serious medical, you
know, you're, you're bleedingfrom your arm, you're gonna say,
Hey, I need help here.
Amanda Whitehouse (17:37):
Right.
Kendra Williams (17:38):
kind of thing, like we have a medical
condition, we need to ask forwhat we need.
Um, so, and that is, you know,making sure the food is safe,
asking the questions, um,vetting places that I'm going to
eat and not.
Just going, okay, well I'll makedo like, and sometimes you do
have to make do, and, but inthose instances that I also have
(18:01):
a backup plan.
So even with Suki, I'm gonnamake sure that I have safe food
with me, or I eat beforehand.
I usually always will have somekind of snack with me just
because.
You never know if you're gonnaget hungry or you know that you
get an accident on the freewayand you need something.
She's opened up a whole newworld for me.
Not only, you know, the foodsituation but that really true
(18:26):
mental relief that I did notrealize was going to be such a
big part of it.
Amanda Whitehouse (18:33):
That's great.
I like how you're talking abouthow was a part of it, but I
think it's just time andexperience too of growing into I
have the right to have food thatis safe, that doesn't make me
sick.
And on top of that, being abasic human right, I also like
to remind people like you arepaying them, you're giving
Kendra Williams (18:49):
Yes.
Amanda Whitehouse (18:50):
service.
And we feel like we don't have aright to ask.
But we're, we're purchasing it.
We are, we're paying them forthat.
Um, and so, yeah, it, it's agood reminder to everyone, all
of us who live some form of thislife that we, we have a right
for multiple reasons.
Kendra Williams (19:05):
Absolutely.
And that's one of the bigreasons I share on social media
is because I want people thatare working in restaurants, in
food service, in, hotels thatthere is medical.
Need for dietary restrictions.
It's not a fad.
It's not just for kicks.
(19:25):
We need this for our health andwellbeing.
Just like a diabetic would needinsulin, right?
A type one.
Um, it's the exact same thing.
We need this food is ourmedicine and having it messed up
is a big deal.
It's not just a preference.
So I wanna share that, that kidsgrowing up today.
(19:46):
will have that confidence andthat ability, and they won't
have to fight all these battles.
I think it's hard enough beingdiagnosed as an adult to fight
the battles that, you know, tosee kids having to deal with
that.
And it hurts my heart to have tofight those battles when they
shouldn't have to.
Having safe food should be justa, easy.
(20:08):
Right.
And it shouldn't becontroversial.
So that's one of the big thingsand I think.
By advocating for it and tellingpeople to share their stories.
I hear from a lot of people, Mycousin has celiac disease and
it's not a big deal for her.
It probably is.
She just is too sad to saysomething.
And the more that we share ourstories with friends, with
(20:31):
family, with people in theworkplace, I mean, it's
uncomfortable.
But the more we do that, themore we're making a change for
people to see the reality.
Of dietary restrictions andthese medical conditions like
celiac disease, that, guesswhat?
We need to take up space we'renot just people that are being
difficult.
'cause if they see you as a realperson, they're like, okay, uh,
(20:56):
she's not one to be.
Extreme.
And she's not, she's not tryingto be difficult, and that I
think is really important.
So that's one thing that Ialways encourage people to do
because that's the only waywe're gonna see change.
Amanda Whitehouse (21:11):
I agree.
It's so telling of that personif they respond to you asking
for safe food as if you areannoying or being dramatic or in
any other negative way
Kendra Williams (21:20):
Yeah.
Amanda Whitehouse (21:21):
When it comes to food allergies or anything.
Kendra Williams (21:23):
There's plenty of stuff to worry about as a
kid.
That food should not be one ofthem.
Amanda Whitehouse (21:28):
Right.
You touched on this earlier,when you do have to worry about
food, whether it's because of, amedical situation or different
reasons, It prevents you fromwhatever else you're supposed to
be doing.
So if you're at a work meeting,worried about if your food's
safe, your brain is not ahundred percent dedicated to the
pitch or the conversation you'resupposed to be having or
whatever it might be.
(21:50):
And the same is true.
I think of kids in school tryingto learn and all they're worried
about, and I hear it so muchwith my, therapy clients, they
weren't paying attention tomath.
They were just wondering iftheir throat felt itchy or
Kendra Williams (22:00):
Yes.
Amanda Whitehouse (22:00):
gonna do it to them at lunch.
You can't.
Function in the ways you'resupposed to when this is first
and foremost.
Kendra Williams (22:06):
Exactly.
Exactly.
Yeah, being diagnosed as anadult.
It's a huge mental load that Idon't want, I, and I think we
need to acknowledge that, thatit is an, it is a mental load
and, and even though I'm notgonna go into anaphylaxis.
It's still going tosignificantly impact my life and
(22:26):
does significantly impact mylife, and there isn't just a
carefree, Hey, I'm hungry.
I was talking to a friend ofmine yesterday and she was out
somewhere and she's like, I'mstarving.
And I have to go home and cookmy own food it's not like you
can just, do a quick DoorDash.
You need to make your food andit's ingredients and there are
(22:50):
prepared foods, but that's notalways convenient and you don't
always have those things.
If I'm out and about, sometimesmy.
Fastest food is okay.
Well that gas station I know isgonna have some chips that I can
eat or some popcorn.
That's not a great meal, butsometimes that's the choice that
you have to make.
Amanda Whitehouse (23:10):
As adults we have maybe a little bit more
assertiveness skills or thingslike that.
But I, I just wanna acknowledgetoo, being diagnosed with
something like this as an adultin a different way is so
challenging because you've livedyour whole life for so long.
Diet and lifestyle andconveniences and all the things
you're talking about.
Kendra Williams (23:28):
Yeah, it was a major adjustment.
It definitely was.
And I think socially it's a hugeadjustment, um, within your
friend circles.
I mean, I don't have the samefriends.
That I had before and thosefriendships are different
because they knew me before andit's really hard.
And I, and I hear this too frommy, my audience on social media,
(23:52):
is it, it's often the friendsand the family.
That it's too hard for them toreconcile this change and they
can't understand that it is alifelong thing.
You used to eat that or We usedto go there and, and there are
some that adjust really well andthey kind of go with it.
(24:13):
I have a.
A good friend of mine who'sawesome, and she's like, okay,
well we're gonna do this, butguess what?
I'm gonna figure that out.
Where we, where we're going.
I will call and I will ask thequestions and I'll know that
it's safe.
Or she'll call and she'll go,you know, Hey, We're gonna have
a party, but the food over thereis safe for you.
And she eats gluten-free.
(24:34):
So I know that she makes safefood, but you know, I have
another friend is like, okay,I'm gonna bake this.
But, um, I want Suki to checkthe ingredients to make sure
they're safe before I make'emfor you.
That's special.
Versus the other ones that arelike, you know, we go out and I
had, we had planned to go to oneplace, and then as we're driving
(24:57):
there, like, no, let's go tothis place instead.
Oh, that, even with my glutendetection dog, it's still, it's
like, oh my gosh, I didn't lookat that menu and I don't know
what they have.
And.
I might just be drinking waterand there may not be an option
for me at all, and it's gonna bereally uncomfortable and more
anxiety.
So yeah, those pieces are reallyreal obviously I have an
(25:20):
advantage'cause I have thislarge community on social media
and I've, you know, met peoplein person and.
Developed really amazingfriendships with people who get
it, but I think surroundingyourself, whether it's in a
support group or you know,locally through meetups and
things like that, with peoplethat get it, because this
(25:41):
disease is very challenging andthat, especially for somebody
like me who was diagnosed latein life, I was diagnosed in my
forties.
There's other issues that I havein my body because of the late
diagnosis.
So there's aches and pains andyou know, my body reacts weirdly
to stuff and I didn't realizethat all of that was a common I.
(26:04):
Um, piece that other people haveuntil I connected with other
people with celiac disease thatwere in my same life stage that
we can sit there and go, okay,yeah, this happened to me and I
feel terrible.
What, what, what should I do?
What would you do here?
Do you eat this and this causesthis?
You know?
So it's really, really helpfulto connect with people that
(26:25):
understand.
And, and then the other part is,is spending more time with
people who, may not have celiacdisease.
But that get it and are willingto do stuff like the friends who
are cooking for me and stufflike that, and the ones that
don't, it's okay to do non-foodthings with them.
Go for walks, go to the movies,you know, meet them somewhere,
(26:47):
where you don't have to dothings that are food related and
that takes a lot of stress outof it, at least for me.
Or if you do food related, haveit be in within your control.
Have them over to your house andcook something that is safe for
you.
Amanda Whitehouse (27:03):
Yeah.
Yeah.
It's gotta be so validatingthough, a different kind of
connection in the relationshipswhere people know what you're
living and how you're feeling.
Feeling in your body.
Kendra Williams (27:11):
Amazing.
Amazing.
And, I do find that social mediais a real equalizer where you
are able to connect with people.
So one of my closest friendswith celiac disease, um, and
she's a gluten detectiontrainer, so she's my partner in
celiac service dogs.
Um, so we just saw the need andwe're like, we gotta do this.
She lives in Minneapolis.
(27:31):
Like I literally met her throughsocial media and we've become
good friends and, we're bothsingle and, and in the same life
stage.
She has a gluten detection dog,obviously she's a gluten
detection dog trainer.
And, and that's fun.
We just went on a celiac cruiserecently and, we stopped in
Victoria BC and met up withanother friend.
(27:53):
That I met through social mediait's really unique that you can
meet people this way and kind ofdevelop connections that way
too.
So I don't ever wanna minimizethat I've been in online support
groups too, to connect withpeople and, just go, oh, hey, we
have a lot in common.
Let's talk some more and maybeif we're, I'm in your, your city
(28:16):
or whatnot.
And when I travel, I start nowtraveling to go to cities where
I can check out gluten-freeplaces.
And kind of make that the centerpoint of my trip,
Amanda Whitehouse (28:28):
I talk all the time on my show.
There's nothing that our nervoussystems, like better than safety
with connection through otherpeople, and then if you can add
the food in, that's, that's justso regulating, it's so important
for us.
Kendra Williams (28:39):
Absolutely.
Amanda Whitehouse (28:40):
I'm curious with the time we have left, What
are some of the biggest hurdlesthat still need to be changed or
addressed?
Kendra Williams (28:47):
Um, I think for, so for gluten detection
dogs, I think awareness andunderstanding, one of my
challenges with service dogs isjust, you know.
A public access and things likethat.
Everybody bringing their petsinto spaces where they're not
trained to be, that causes a lotof issues for me as a service
(29:09):
dog handler for celiac disease.
Um, I think the biggest thing isjust better knowledge and
understanding of the importanceof safe food that you know, that
restaurants that makeadaptations to have.
A way to cook things separately,to cook it.
Safety, have, have moreconsistent, um, for packaged
(29:32):
foods.
Labeling, gluten is not labeledas an allergen in the United
States, and that is a major,major pain point for me.
Wheat is labeled because wheatis an allergen, but, you know,
gluten is a protein found inwheat, rye, and barley, and
there are a lot of derivatives,especially of barley.
So barley malt, yeast extract,things like that, it's like a
(29:56):
scavenger hunt Every time youread a label and in things that
you wouldn't imagine are in it.
Having gluten labeled would makeour lives so much easier.
Amanda Whitehouse (30:05):
It's not for everybody, but for those who are
curious, who is right for toconsider having a gluten
detection dog?
Kendra Williams (30:13):
I think if you have.
Ongoing symptoms and you'regetting glutened regularly, your
TT G levels are out of control.
You have refractory celiacdisease would be one.
Those would be the area where Iwould really consider it, but
you also have to have the timeand the commitment to a dog.
(30:35):
The training is a two yearprocess, you're not training 24
7, do you have time for the dog?
Do you have time for, not onlytheir mental stimulation, so the
training, the exercise, she getswalked three times a day.
We play ball for an hour everyday.
If you don't have time for that,then you need to consider that,
(30:55):
but if it's something where youare having issues.
If you have that stress, thehigh level of anxiety related to
that would would be it.
Um, it's not easy.
I mean, having a dog is, youknow, it's having a dog, And
it's not just.
The dog, you know, the work athome like a pet dog.
(31:17):
But taking a dog to a grocerystore does add complications.
And frankly, anymore, I'm nottaking her to the grocery store
'cause it's stressful for me.
Like it's stressful enough togrocery shop.
But, um, people bringing theirpets in causes anxiety because.
Then she could be attackedbecause that's happens.
And then you have peoplebothering you too.
(31:39):
Like, oh, there was kissy noisesat her and you're so cute people
petting her.
Well, then I have to worry aboutthem and not her.
And that's distracting to her.
So she's also less accurate,she's trained to ignore them,
but that's really hard to ignorepeople that are like, hi, cute
dog.
And that are petting you, you,it is like bringing.
(32:02):
A small child, like a 2-year-oldwith you all the time, sometimes
better behaved than some twoyear olds.
But, um, but it's work so thatyou have to understand that too.
Amanda Whitehouse (32:12):
Yeah, so, and let's let that serve as a
reminder to everybody who'slistening.
If you see any sort of servicedog, any type of working dog.
The appropriate thing to do andthe most helpful thing is to
ignore, right?
Kendra Williams (32:25):
Yes, ignore the, the dog.
I mean, if you're curious, youcan address the questions to the
owner, but I especially like topoint it out because, so Suki.
Isn't working all the time likeshe's in the grocery store, but
if she's only working, likedoing something important for
me, if she's sniffing the food.
But there are seizure dogs,there are cardiac alert dogs out
(32:47):
there, and those dogs aresniffing all the time.
And if they miss an alert, if acardiac alert or seizure alert
dog misses an alert becausesomebody distracted them, that
could mean that person issignificantly harmed.
Like they could fall and, andhave a concussion and, you know,
have injuries versus that dogalerts that gives them, you
(33:09):
know, a window to get themselvessafely on the floor so that
they're not going to harmthemselves.
But it happens all the time.
It happens all the time.
Yeah.
Don't, don't bring your dog.
Into places as well whereservice dogs, where service dogs
only, no matter how cute yourdog is, because they're not
trained for that.
Amanda Whitehouse (33:30):
Right, right.
It's unsafe for all of the dogsand the humans
Kendra Williams (33:32):
Yeah.
Amanda Whitehouse (33:33):
I would assume.
Kendra Williams (33:34):
Yes, yes.
Amanda Whitehouse (33:37):
What didn't we get to?
Did we miss anything important?
Kendra Williams (33:40):
It's a super rewarding process and I would
not change it for the world.
So I definitely think if peopleare interested or thinking that
might be something for them totrain a gluten detection or an
allergen detection dog,definitely do your research.
Um, our website, celiac servicedogs.com, we have free resources
on there as well.
(34:00):
The courses are very.
inexpensive, but that will helpyou.
Be equipped knowing ahead oftime will make you feel more
empowered that you aren't goingto be led astray by something
that a trainer tells you or thata breeder tells you, or you
know, you will know what's rightfor you.
'cause your health is important.
If you start right, you're goingto have confidence going through
(34:21):
the process, you'll be in abetter spot with you and your
dog.
It's meant to be fun.
That's the thing.
It's, it's fun for the dogs.
I mean they're working, but it'sa game to Suki and it's super
fun.
If I got how her gluten jar,she'd be like jumping up and
down, like running over.
Excited to do it.
So it's fun for them.
(34:42):
We want it to be fun for you,and we want you to start with
the right thing because it's notonly work, it's help, but it's a
partnership where you want toget your dogs, working and then
you feel good going forward, so,and you have that security that
you're eating safely.
Amanda Whitehouse (35:02):
Yeah.
Well thank you for sharing thatwith everyone.
I will put it again in thenotes, but Tell people where
they can follow you if theydon't already.
Kendra Williams (35:08):
It's at Suki, SUKI.
PWD for Portuguese.
Water dog all over.
So Instagram, TikTok, Facebook,YouTube, you name it, it's Suki,
PWD.
Amanda Whitehouse (35:21):
They can just follow you and live vicariously
like I get to
Kendra Williams (35:24):
Absolutely just follow along and, and I share
lots about living gluten-freewith a gluten detection dog.
So I have cute Suki doing allher things, but then I share
facts and I also share lots ofstuff.
For people than to educate theirfriends or family members and
things like that.
'cause sometimes it's easier toshare something that somebody
else has prepared to go, Hey,here, this is important.
(35:46):
If you have celiac disease, foodallergies, definitely follow
along and hopefully you'll getsome good things and let me know
what you wanna see more of.
I love that too.
Amanda Whitehouse (35:56):
Perfect.
Thank you so much for sharingeverything you do on social
media and for joining me on thisshow.
I love hearing about
Kendra Williams (36:02):
Awesome.
Thank you so much, Amanda.
It's been a pleasure.
I hope you found today'sconversation as fascinating as I
did.
Living with Celiac requiresconstant vigilance and tools
like gluten detection dogs canmake so much difference in
safety and peace of mind.
I love hearing about thedifferent and creative tools
that people come up with formanaging their own medical
needs.
Here are three action steps youcan take after listening today.
(36:25):
Number one, follow Kendra andSuki to learn more about what
life with a gluten detection doglooks like day to day.
She's at Suki PWD orS-U-K-I-P-W-D.
Number two, explore othercommunity resources online
Create a community that'svalidating and that's
supportive, and has theexperience necessary to give you
ideas and tips from their ownlives that might be helpful for
(36:47):
you.
It'll help you feel so much lessalone.
There are amazing celiac forums,support groups, social media
spaces where you can findencouragement and connection.
And number three, check outin-person communities or events.
One that's coming up is theWicked Gluten-Free Expo in
Fitchburg, Massachusetts onSeptember 20th.
I'll be there speaking about themental health aspects of living
(37:07):
with Celiac.
And living a gluten-freelifestyle and the role of the
nervous system and how to manageit.
If you're nearby, I would loveto meet you there.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
If you have any questions aboutyour own medical experience or
(37:27):
mental health needs, pleaseconsult a professional.
I'm Dr.
Amanda Whitehouse.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence..
(00:22):
Welcome back to Don't Feed TheFear.
Today, I'm so excited to bejoined by an incredible guest
who brings a very special andadorable partner with her
everywhere she goes.
Kendra Williams is here to talkabout life with her gluten
detection dog Suki.
Together they navigate life withceliac disease in a way that is
empowering and eyeopening.
We'll be talking about what it'slike to live with Celiac, how
(00:43):
her dog helps her stay safe.
The pros and the challenges ofhaving a gluten detection dog
and the ways that she has foundstrength in community in the
process.
Amanda Whitehouse (00:52):
Kendra, thank you so much for coming to talk
to me here on Don't Feed theFear about Your Life with Celiac
and your Sweet Dog Suki.
Kendra Williams (00:59):
Well, thank you.
It's great to be here, Amanda.
Amanda Whitehouse (01:01):
Yeah, I'm excited to talk to you.
I, am new to Instagram, butyours is one of the first
accounts that I found becauseobviously cuteness factor.
But it's also so interestingwatching, how different your
life is managing, your celiacthan the rest of us who have
some kind of a food allergic,disease.
Did your account grow reallyquickly once you started sharing
about that?
Kendra Williams (01:21):
Yeah, I think, I mean, it started off where I
started my account just to shareabout.
My training process of trainingthis gluten detection dog, and
it was something fun to doduring the lockdowns of the
pandemic.
So I started it in 2020, rightafter I got Suki and my gluten
detection dog, and she was justa puppy, so I was sharing cute
(01:43):
puppy photos and stuff likethat.
But then as it grew, like then Irealized, oh, this is a bit more
than just me having this littlecute little dog account.
It's really me connecting withpeople.
Like me that are dealing withceliac disease.
And so it did, you know, then itgrew slow and steady.
(02:03):
I mean, I think that's the goodway to grow when you have
organic followers.
Like it wasn't this hugeovernight.
Um, so I've been doing it nowfor five years, so it's pretty
consistently over time growing
Amanda Whitehouse (02:18):
Tell me about Portuguese water dogs.
I don't know a lot aboutdifferent breeds of dogs because
we are allergic in my house.
Kendra Williams (02:23):
Oh well, Portuguese water dogs.
Um, I don't necessarilyrecommend them to be gluten
detection dogs or service dogsbecause they are a.
Really smart, very high demanddog.
So they require a bit more work.
But they were bred to work thefishing boats in Portugal.
They don't shed, they have acoat that grows.
(02:44):
Continuously.
So they require grooming, butbecause they would work
independently where they wouldferry nuts and buoys and mail
between boats, fishing boats,they are bred to work very
independently, which sometimesis a challenge in training for
service work because you have toget them on board just like you
(03:05):
do with a child, sometimes youget a little bit older kid,
they're like, oh, just'cause Isaid, so that's not a reason.
So you have to go, Hey, here'swhy we're doing this and here's
why it's a good idea for you.
So that's why I don't recommendher.
They're, they're a fabulousbreed, though.
They don't shed, I also haveallergies, she does not bother
me, but, not everybody is, Isable to tolerate dogs.
(03:27):
So she's, she's super smart andshe's my second dog.
The most famous Portuguese waterdogs, um, were in the White
House under the Obamas.
So Bo was the, the first, thefirst dog, the first Portuguese
water dog in the White House.
And then their other dog, Iforget what her name was, it was
a girl like Sunny, maybe.
Amanda Whitehouse (03:46):
So how did you end up picking that breed
after what you just described
Kendra Williams (03:50):
I had a Portuguese water dog before, so
if you've had a Portuguese waterdog, you get it.
And they're kind of a specialbreed.
So I, I was looking at getting adog and was kind of researching
breeds, and then I realized.
Um, I think originally I waslooking at maybe getting a
standard poodle.
So, so really good breeds wouldbe like standard poodle lab, um,
(04:14):
golden.
Those tend to be like the mostconsistent service dog breeds.
Um, and so I, I can't haveshedding dogs, so I was like,
maybe I'll get a standardpoodle, but I thought if I'm
getting that big of a dog, Ishould just get a Portuguese
water dog.
And because I love the breed andthey're, they're really special
to me.
And that's how I decided to, todo it.
(04:37):
Although I went about itcompletely wrong.
It was more of a whim.
And thankfully I knew enoughabout it.
But now that having gone throughservice org training and making
tons of mistakes, um, I don'twant people to make those
mistakes.
So I put together some courseswith a gluten detection trainer,
(04:58):
um, that walk you through, likeif you're thinking about it.
Don't just do what I did andjump right in and go, let me get
a dog and then figure the restof the stuff out that is setting
you up for failure.
And it also might set you upfor, some bad mistakes along the
way.
So we have a course that talksthrough like what breed is the
(05:18):
right breed for you and based onwhat your needs are.
Some people might have multipletasks that they have to do.
So like if you had, a mobilityalert, a mobility support.
Plus an allergen or or glutendetection dog.
That would be one where youlive, what type of family, your
lifestyle, like can you have asheddting dog or not?
(05:40):
Are you willing to put up withgrooming?
We go through all that in thefirst course and the second
course we go through.
You know how to find a breeder,what breeders are, right?
There's a lot of breeders outthere that are doing it for the
money, and they're promisingthings that are not true, and in
a service dog environment, youwant.
(06:00):
The right characteristics.
You want good health and thosekind of things.
If you're working with a breederthat really is a heritage
breeder that's very concernedabout that and is doing testing,
and then they're also doingthings with the puppies to get
them, they're doing early centintroduction, early neurological
stimulation, that's superimportant for service dog work.
(06:23):
And then how to select withinthe litter, what's the right
puppy.
So we go through all that in thecourse, and then we have.
Some other courses that go morein detail about the gluten
detection process, but anybodythat's thinking about getting a
service dog, allergen or glutendetection.
I highly recommend it before youdo it.
There are 30 minute videos withhandbooks.
(06:44):
Really, really good to let yougo, okay, is this good for me
and when can I do it?
Because a lot of people go,well, I want it for my child.
But my child is young and youknow, but I want it when they're
a teenager.
Well, how can you plan for thatand for getting a dog, the right
dog and stuff like that?
Sometimes it takes a year to twoyears, especially really good
(07:06):
breeders.
So I have to be thinking for thefuture, like, is that gonna
work?
Is that not gonna work for me?
Um, and what that looks like.
Amanda Whitehouse (07:14):
Yeah, there's a lot to it all lining up in the
right way,
Kendra Williams (07:17):
Yes.
Amanda Whitehouse (07:18):
as you said is not how you did it.
Oh, I wanna ask about that.
But first, while we're on thetopic, can you tell people where
they can find those courses?
Kendra Williams (07:24):
Yeah.
Celiac service dogs.com.
Amanda Whitehouse (07:27):
Okay.
Um, so you didn't do it thatway.
Was this your, like, instead ofsourdough bread, because
obviously you're have celiac, isthat, was this your COVID
Kendra Williams (07:36):
it kind of was, well, I travel a lot for work
and that was one of the issuesfor me when I,
Amanda Whitehouse (07:42):
I.
Kendra Williams (07:42):
uh, was diagnosed was like, how do I
travel?
And I, I figured out really goodmethods to travel, but you know,
you'd go out to client dinners,you'd go places where you had no
control over meals, and I wouldjust sit there in fear.
And not eating because you'rethere for work.
You can't be incapacitated fordays because you got gluten and
(08:06):
it just, and then I would go outpersonally and I would get sick
often, And my last meal beforethe lockdown, I went and met
some friends for breakfast and Isaid, you know what?
I'm not eating, but I'm gonnahave tea.
I'm gonna have tea, kombucha,and water.
I got glutened.
Don't know how, but I gotglutened and, and you know, and
(08:27):
it wasn't terrible.
It was like cross contamination.
But I mean, by the time I gothome I was super bloated and I
felt just terrible.
And you know, I had joint achesthe next day and I'm like, this
is just wrong.
So that was the triggering pointof it.
When everything shut down, I'mlike, well, I'm not traveling so
I can.
(08:47):
Get a dog and I had a dog whowas 16, so I knew he wasn't
gonna be around that muchlonger.
There's just so much going on atthat point in life that I
thought I can't deal with my dogdying and the world being so
crazy there was just too manyother things.
But that was all the impetus.
(09:08):
Well, I have time.
I'm not traveling.
My work was slow.
And so I'm like, you know what?
Now or never, I didn't realize,I mean, thankfully I was home
for a long time, so, but at thepoint I didn't really realize
how long it was.
So that was in March and she wasborn March 27th.
(09:28):
And then I went up and I got herMay, May 31st, 2020.
So, and she came home and shewas just a little, a little
girl, just a tiny, tiny, tinybaby.
My other dog was a nine and ahalf pound bichon.
And she was the same size ashim, so she was little bitty,
(09:51):
maybe a little smaller.
So, and now she's a 50 poundgirl.
Amanda Whitehouse (09:54):
So how long did it take then for her to be
ready?
You said it can be a year, twoyear
Kendra Williams (10:00):
it's a two year process to train a dog.
There's a lot of people outthere that.
Are selling dogs that arefinished at six months.
They're taking your money.
And I hear, I've heard it from alot of those people that are
heartbroken, they've spent 10,$15,000 and ended up with
nothing.
So that's, so, takes two yearsof the process and then you also
(10:20):
wanna make sure the dog is fullymatured.
They need to go through alltheir fear periods because it's
not just the gluten part of itor the allergen part of it.
That's a huge part of it.
And that does take time.
And it's very different fromlike other scent work.
So if you had a bomb detectionor an agricultural detection,
(10:41):
you know, the dogs at theairport.
Right.
They're sniffing for somethingthat is stationary or you know,
they, they get it and it's, andit's a single item and so they a
bomb.
And it's also the odors arestronger and they're multiple,
right.
So it's, it's, it's largequantities in general.
(11:03):
Um, and for medical alert, likea diabetes or smelling low blood
sugar.
High blood sugar, that floatsthrough the air very well.
So it's.
Easier for the dog to catchGluten is very heavy, so it's
really hard for them to capture.
It doesn't really go as airborneas other scents like, like low
(11:23):
blood sugar, you know, your bodyscent and
Amanda Whitehouse (11:26):
emitting from your whole body, I would assume
too.
Kendra Williams (11:29):
The dogs have to know down to cross contact,
which is trace amounts ofgluten.
Amanda Whitehouse (11:34):
right?
Kendra Williams (11:34):
have to work not only identifying the scent,
like in a large quantity all theway down to trace amounts, but
mixed in with other things.
So mixed in with plates of foodmixed through packages, um, and,
and on all those differentareas.
So that's, and, and, you know,liquids and so different mediums
(11:56):
and then they need to know it.
Not only at home, but in thegrocery store, in, in the
restaurant, and you know,wherever you are.
And all that adds to the levelof difficulty.
So you have the, the scent partis a big part, and then you also
have the public access part.
So the dog has to be properlybehaved and they have to know
(12:18):
how to.
Settle.
So that's the other part too.
A a gluten or an allergendetection.
They work really short periodsof time.
If I'm going out to dinner,she's gonna check my plate for a
minute.
And then she's gotta be sleepingunderneath the table
Amanda Whitehouse (12:34):
Mm-hmm.
Kendra Williams (12:35):
everything going around, including the
stuff that's falling on thefloor, the people walking by,
you know, the people stepping onher ta, all that kind of stuff.
So those are all pieces that youhave to train for.
Um, everything in between, youknow, riding, public transport,
riding in, in cars, all thatkind of stuff.
(12:56):
And the other part is you need atrainer that understands cross
contact and stuff like that.
And a lot of dog trainer, unlessyou have celiac disease or you
have a food allergy, you don'tget that.
You don't understand it.
And I have a video on, on ourwebsite in celiac Service doc, a
big gal that worked with atrainer and the trainer was
calling her to ask her what wasgluten and what products contain
(13:19):
gluten.
It's a serious medicalcondition.
So it's really important.
It's not just a, Hey, I trainedthis dog to pick up the keys,
which is incredibly importanttask.
But if they don't get the keysto you on the first try, they
can try a few more times.
If your dog tells you, Hey,there's no gluten and there is
(13:41):
gluten, and they're dogs, sothey can make mistakes, I mean.
They can make mistakes, but Ihave a, I have a very high level
of trust in Suki and Iunderstand her body language.
And then I just have to bepatient too, that are, there's
gonna be times when I'm like,Hmm, I don't know about that.
I'll put the plate aside andhave her do something else and
then have her check again.
Amanda Whitehouse (14:03):
What's her track record?
Kendra Williams (14:04):
For me eating, she does really well, she makes
mistakes, but as far as when itcounts.
She doesn't, so I don't, I don'tget gluten, you know, that
doesn't mean that I won't.
But she, she, she keeps me safefor sure.
Now when we practice too, wehave maintenance where we're
doing stuff on the regular andthere's times when I'm like,
(14:26):
okay, he really didn't checkthat or you got that one wrong.
So, so, but it's part, that'spart of why we practice.
And then I know, and then itkeeps that scent also fresh in
her nose.
Amanda Whitehouse (14:36):
Could you talk about what life was like
before and how this has changed?
Obviously you're not gettinggluten as much and feeling
better, but I'm sure there's somuch more to it than that.
Kendra Williams (14:46):
Yeah.
The biggest thing is a mentalrelief.
So I did not realize until afterI had trained her how much going
to going out to eat.
I.
I had this, you know, feeling ofanxiety sitting there looking at
the plate going.
(15:06):
Yeah.
And most times I would, Iremember like having a dialogue
in my head, it's 50 50.
If this is gonna make me sick,it's 50 50.
If I'm not gonna be able tofinish this evening, um, you
know.
Or that I'm gonna have to leaveearly, or I'm gonna spend, you
know, time in the bathroombefore I even make it home, or,
(15:27):
you know, and then I'm gonna belaying in bed with chills and
body aches and brain fog and I'mgonna be sick for two weeks.
So that's, that was a huge deal.
I did not realize the mentalrelief that she gives me.
The all clear then I can.
Heartily have this relief that Ican eat it and actually enjoy
(15:50):
what I'm eating and not sitthere and worry.
Um, the other part is, is I wasfearful of a lot of things and I
would choose not to even ventureto eat things that might be, you
know, technically, naturally.
Naturally gluten free, but you'dgo, oh, cross contact.
(16:11):
And maybe, you know, I'll giveyou an example.
Like Costco rotisserie chicken.
I would never have bought Costcorotisserie chicken'cause I'm
like, cross contact.
That's gotta be a mess.
She always clears it.
And um, you know, and it, I'vehad no issues with it, but that
would be something that Iwould've.
A hundred percent avoided andnow it's something I buy
(16:32):
regularly and have never had anissue with it.
Um, so things like that, butfood also in, in restaurants and
things like that, it alsobrought out to me, um, because I
don't want that awkwardembarrassment of, hey.
She alerted to the food.
And you have, I mean, I, you dohave to deal with that.
(16:54):
Um, that I need to up my game interms of making sure that I'm
advocating for good food.
So safe food that I'm asking thequestions at the restaurant.
I think early in my diagnosis,so I was diagnosed in 2017, so I
got her a few years afterdiagnosis.
And I think a lot of people.
Feel this way is that it's like,I don't wanna take up space.
(17:17):
I don't want to be a bother.
'cause it's awkward and we'renot used to that.
And um, I always encouragepeople, you have to take up
space'cause your health is soimportant.
I mean, if you had, uh, youknow, a serious medical, you
know, you're, you're bleedingfrom your arm, you're gonna say,
Hey, I need help here.
Amanda Whitehouse (17:37):
Right.
Kendra Williams (17:38):
kind of thing, like we have a medical
condition, we need to ask forwhat we need.
Um, so, and that is, you know,making sure the food is safe,
asking the questions, um,vetting places that I'm going to
eat and not.
Just going, okay, well I'll makedo like, and sometimes you do
have to make do, and, but inthose instances that I also have
(18:01):
a backup plan.
So even with Suki, I'm gonnamake sure that I have safe food
with me, or I eat beforehand.
I usually always will have somekind of snack with me just
because.
You never know if you're gonnaget hungry or you know that you
get an accident on the freewayand you need something.
She's opened up a whole newworld for me.
Not only, you know, the foodsituation but that really true
(18:26):
mental relief that I did notrealize was going to be such a
big part of it.
Amanda Whitehouse (18:33):
That's great.
I like how you're talking abouthow was a part of it, but I
think it's just time andexperience too of growing into I
have the right to have food thatis safe, that doesn't make me
sick.
And on top of that, being abasic human right, I also like
to remind people like you arepaying them, you're giving
Kendra Williams (18:49):
Yes.
Amanda Whitehouse (18:50):
service.
And we feel like we don't have aright to ask.
But we're, we're purchasing it.
We are, we're paying them forthat.
Um, and so, yeah, it, it's agood reminder to everyone, all
of us who live some form of thislife that we, we have a right
for multiple reasons.
Kendra Williams (19:05):
Absolutely.
And that's one of the bigreasons I share on social media
is because I want people thatare working in restaurants, in
food service, in, hotels thatthere is medical.
Need for dietary restrictions.
It's not a fad.
It's not just for kicks.
(19:25):
We need this for our health andwellbeing.
Just like a diabetic would needinsulin, right?
A type one.
Um, it's the exact same thing.
We need this food is ourmedicine and having it messed up
is a big deal.
It's not just a preference.
So I wanna share that, that kidsgrowing up today.
(19:46):
will have that confidence andthat ability, and they won't
have to fight all these battles.
I think it's hard enough beingdiagnosed as an adult to fight
the battles that, you know, tosee kids having to deal with
that.
And it hurts my heart to have tofight those battles when they
shouldn't have to.
Having safe food should be justa, easy.
(20:08):
Right.
And it shouldn't becontroversial.
So that's one of the big thingsand I think.
By advocating for it and tellingpeople to share their stories.
I hear from a lot of people, Mycousin has celiac disease and
it's not a big deal for her.
It probably is.
She just is too sad to saysomething.
And the more that we share ourstories with friends, with
(20:31):
family, with people in theworkplace, I mean, it's
uncomfortable.
But the more we do that, themore we're making a change for
people to see the reality.
Of dietary restrictions andthese medical conditions like
celiac disease, that, guesswhat?
We need to take up space we'renot just people that are being
difficult.
'cause if they see you as a realperson, they're like, okay, uh,
(20:56):
she's not one to be.
Extreme.
And she's not, she's not tryingto be difficult, and that I
think is really important.
So that's one thing that Ialways encourage people to do
because that's the only waywe're gonna see change.
Amanda Whitehouse (21:11):
I agree.
It's so telling of that personif they respond to you asking
for safe food as if you areannoying or being dramatic or in
any other negative way
Kendra Williams (21:20):
Yeah.
Amanda Whitehouse (21:21):
When it comes to food allergies or anything.
Kendra Williams (21:23):
There's plenty of stuff to worry about as a
kid.
That food should not be one ofthem.
Amanda Whitehouse (21:28):
Right.
You touched on this earlier,when you do have to worry about
food, whether it's because of, amedical situation or different
reasons, It prevents you fromwhatever else you're supposed to
be doing.
So if you're at a work meeting,worried about if your food's
safe, your brain is not ahundred percent dedicated to the
pitch or the conversation you'resupposed to be having or
whatever it might be.
(21:50):
And the same is true.
I think of kids in school tryingto learn and all they're worried
about, and I hear it so muchwith my, therapy clients, they
weren't paying attention tomath.
They were just wondering iftheir throat felt itchy or
Kendra Williams (22:00):
Yes.
Amanda Whitehouse (22:00):
gonna do it to them at lunch.
You can't.
Function in the ways you'resupposed to when this is first
and foremost.
Kendra Williams (22:06):
Exactly.
Exactly.
Yeah, being diagnosed as anadult.
It's a huge mental load that Idon't want, I, and I think we
need to acknowledge that, thatit is an, it is a mental load
and, and even though I'm notgonna go into anaphylaxis.
It's still going tosignificantly impact my life and
(22:26):
does significantly impact mylife, and there isn't just a
carefree, Hey, I'm hungry.
I was talking to a friend ofmine yesterday and she was out
somewhere and she's like, I'mstarving.
And I have to go home and cookmy own food it's not like you
can just, do a quick DoorDash.
You need to make your food andit's ingredients and there are
(22:50):
prepared foods, but that's notalways convenient and you don't
always have those things.
If I'm out and about, sometimesmy.
Fastest food is okay.
Well that gas station I know isgonna have some chips that I can
eat or some popcorn.
That's not a great meal, butsometimes that's the choice that
you have to make.
Amanda Whitehouse (23:10):
As adults we have maybe a little bit more
assertiveness skills or thingslike that.
But I, I just wanna acknowledgetoo, being diagnosed with
something like this as an adultin a different way is so
challenging because you've livedyour whole life for so long.
Diet and lifestyle andconveniences and all the things
you're talking about.
Kendra Williams (23:28):
Yeah, it was a major adjustment.
It definitely was.
And I think socially it's a hugeadjustment, um, within your
friend circles.
I mean, I don't have the samefriends.
That I had before and thosefriendships are different
because they knew me before andit's really hard.
And I, and I hear this too frommy, my audience on social media,
(23:52):
is it, it's often the friendsand the family.
That it's too hard for them toreconcile this change and they
can't understand that it is alifelong thing.
You used to eat that or We usedto go there and, and there are
some that adjust really well andthey kind of go with it.
(24:13):
I have a.
A good friend of mine who'sawesome, and she's like, okay,
well we're gonna do this, butguess what?
I'm gonna figure that out.
Where we, where we're going.
I will call and I will ask thequestions and I'll know that
it's safe.
Or she'll call and she'll go,you know, Hey, We're gonna have
a party, but the food over thereis safe for you.
And she eats gluten-free.
(24:34):
So I know that she makes safefood, but you know, I have
another friend is like, okay,I'm gonna bake this.
But, um, I want Suki to checkthe ingredients to make sure
they're safe before I make'emfor you.
That's special.
Versus the other ones that arelike, you know, we go out and I
had, we had planned to go to oneplace, and then as we're driving
(24:57):
there, like, no, let's go tothis place instead.
Oh, that, even with my glutendetection dog, it's still, it's
like, oh my gosh, I didn't lookat that menu and I don't know
what they have.
And.
I might just be drinking waterand there may not be an option
for me at all, and it's gonna bereally uncomfortable and more
anxiety.
So yeah, those pieces are reallyreal obviously I have an
(25:20):
advantage'cause I have thislarge community on social media
and I've, you know, met peoplein person and.
Developed really amazingfriendships with people who get
it, but I think surroundingyourself, whether it's in a
support group or you know,locally through meetups and
things like that, with peoplethat get it, because this
(25:41):
disease is very challenging andthat, especially for somebody
like me who was diagnosed latein life, I was diagnosed in my
forties.
There's other issues that I havein my body because of the late
diagnosis.
So there's aches and pains andyou know, my body reacts weirdly
to stuff and I didn't realizethat all of that was a common I.
(26:04):
Um, piece that other people haveuntil I connected with other
people with celiac disease thatwere in my same life stage that
we can sit there and go, okay,yeah, this happened to me and I
feel terrible.
What, what, what should I do?
What would you do here?
Do you eat this and this causesthis?
You know?
So it's really, really helpfulto connect with people that
(26:25):
understand.
And, and then the other part is,is spending more time with
people who, may not have celiacdisease.
But that get it and are willingto do stuff like the friends who
are cooking for me and stufflike that, and the ones that
don't, it's okay to do non-foodthings with them.
Go for walks, go to the movies,you know, meet them somewhere,
(26:47):
where you don't have to dothings that are food related and
that takes a lot of stress outof it, at least for me.
Or if you do food related, haveit be in within your control.
Have them over to your house andcook something that is safe for
you.
Amanda Whitehouse (27:03):
Yeah.
Yeah.
It's gotta be so validatingthough, a different kind of
connection in the relationshipswhere people know what you're
living and how you're feeling.
Feeling in your body.
Kendra Williams (27:11):
Amazing.
Amazing.
And, I do find that social mediais a real equalizer where you
are able to connect with people.
So one of my closest friendswith celiac disease, um, and
she's a gluten detectiontrainer, so she's my partner in
celiac service dogs.
Um, so we just saw the need andwe're like, we gotta do this.
She lives in Minneapolis.
(27:31):
Like I literally met her throughsocial media and we've become
good friends and, we're bothsingle and, and in the same life
stage.
She has a gluten detection dog,obviously she's a gluten
detection dog trainer.
And, and that's fun.
We just went on a celiac cruiserecently and, we stopped in
Victoria BC and met up withanother friend.
(27:53):
That I met through social mediait's really unique that you can
meet people this way and kind ofdevelop connections that way
too.
So I don't ever wanna minimizethat I've been in online support
groups too, to connect withpeople and, just go, oh, hey, we
have a lot in common.
Let's talk some more and maybeif we're, I'm in your, your city
(28:16):
or whatnot.
And when I travel, I start nowtraveling to go to cities where
I can check out gluten-freeplaces.
And kind of make that the centerpoint of my trip,
Amanda Whitehouse (28:28):
I talk all the time on my show.
There's nothing that our nervoussystems, like better than safety
with connection through otherpeople, and then if you can add
the food in, that's, that's justso regulating, it's so important
for us.
Kendra Williams (28:39):
Absolutely.
Amanda Whitehouse (28:40):
I'm curious with the time we have left, What
are some of the biggest hurdlesthat still need to be changed or
addressed?
Kendra Williams (28:47):
Um, I think for, so for gluten detection
dogs, I think awareness andunderstanding, one of my
challenges with service dogs isjust, you know.
A public access and things likethat.
Everybody bringing their petsinto spaces where they're not
trained to be, that causes a lotof issues for me as a service
(29:09):
dog handler for celiac disease.
Um, I think the biggest thing isjust better knowledge and
understanding of the importanceof safe food that you know, that
restaurants that makeadaptations to have.
A way to cook things separately,to cook it.
Safety, have, have moreconsistent, um, for packaged
(29:32):
foods.
Labeling, gluten is not labeledas an allergen in the United
States, and that is a major,major pain point for me.
Wheat is labeled because wheatis an allergen, but, you know,
gluten is a protein found inwheat, rye, and barley, and
there are a lot of derivatives,especially of barley.
So barley malt, yeast extract,things like that, it's like a
(29:56):
scavenger hunt Every time youread a label and in things that
you wouldn't imagine are in it.
Having gluten labeled would makeour lives so much easier.
Amanda Whitehouse (30:05):
It's not for everybody, but for those who are
curious, who is right for toconsider having a gluten
detection dog?
Kendra Williams (30:13):
I think if you have.
Ongoing symptoms and you'regetting glutened regularly, your
TT G levels are out of control.
You have refractory celiacdisease would be one.
Those would be the area where Iwould really consider it, but
you also have to have the timeand the commitment to a dog.
(30:35):
The training is a two yearprocess, you're not training 24
7, do you have time for the dog?
Do you have time for, not onlytheir mental stimulation, so the
training, the exercise, she getswalked three times a day.
We play ball for an hour everyday.
If you don't have time for that,then you need to consider that,
(30:55):
but if it's something where youare having issues.
If you have that stress, thehigh level of anxiety related to
that would would be it.
Um, it's not easy.
I mean, having a dog is, youknow, it's having a dog, And
it's not just.
The dog, you know, the work athome like a pet dog.
(31:17):
But taking a dog to a grocerystore does add complications.
And frankly, anymore, I'm nottaking her to the grocery store
'cause it's stressful for me.
Like it's stressful enough togrocery shop.
But, um, people bringing theirpets in causes anxiety because.
Then she could be attackedbecause that's happens.
And then you have peoplebothering you too.
(31:39):
Like, oh, there was kissy noisesat her and you're so cute people
petting her.
Well, then I have to worry aboutthem and not her.
And that's distracting to her.
So she's also less accurate,she's trained to ignore them,
but that's really hard to ignorepeople that are like, hi, cute
dog.
And that are petting you, you,it is like bringing.
(32:02):
A small child, like a 2-year-oldwith you all the time, sometimes
better behaved than some twoyear olds.
But, um, but it's work so thatyou have to understand that too.
Amanda Whitehouse (32:12):
Yeah, so, and let's let that serve as a
reminder to everybody who'slistening.
If you see any sort of servicedog, any type of working dog.
The appropriate thing to do andthe most helpful thing is to
ignore, right?
Kendra Williams (32:25):
Yes, ignore the, the dog.
I mean, if you're curious, youcan address the questions to the
owner, but I especially like topoint it out because, so Suki.
Isn't working all the time likeshe's in the grocery store, but
if she's only working, likedoing something important for
me, if she's sniffing the food.
But there are seizure dogs,there are cardiac alert dogs out
(32:47):
there, and those dogs aresniffing all the time.
And if they miss an alert, if acardiac alert or seizure alert
dog misses an alert becausesomebody distracted them, that
could mean that person issignificantly harmed.
Like they could fall and, andhave a concussion and, you know,
have injuries versus that dogalerts that gives them, you
(33:09):
know, a window to get themselvessafely on the floor so that
they're not going to harmthemselves.
But it happens all the time.
It happens all the time.
Yeah.
Don't, don't bring your dog.
Into places as well whereservice dogs, where service dogs
only, no matter how cute yourdog is, because they're not
trained for that.
Amanda Whitehouse (33:30):
Right, right.
It's unsafe for all of the dogsand the humans
Kendra Williams (33:32):
Yeah.
Amanda Whitehouse (33:33):
I would assume.
Kendra Williams (33:34):
Yes, yes.
Amanda Whitehouse (33:37):
What didn't we get to?
Did we miss anything important?
Kendra Williams (33:40):
It's a super rewarding process and I would
not change it for the world.
So I definitely think if peopleare interested or thinking that
might be something for them totrain a gluten detection or an
allergen detection dog,definitely do your research.
Um, our website, celiac servicedogs.com, we have free resources
on there as well.
(34:00):
The courses are very.
inexpensive, but that will helpyou.
Be equipped knowing ahead oftime will make you feel more
empowered that you aren't goingto be led astray by something
that a trainer tells you or thata breeder tells you, or you
know, you will know what's rightfor you.
'cause your health is important.
If you start right, you're goingto have confidence going through
(34:21):
the process, you'll be in abetter spot with you and your
dog.
It's meant to be fun.
That's the thing.
It's, it's fun for the dogs.
I mean they're working, but it'sa game to Suki and it's super
fun.
If I got how her gluten jar,she'd be like jumping up and
down, like running over.
Excited to do it.
So it's fun for them.
(34:42):
We want it to be fun for you,and we want you to start with
the right thing because it's notonly work, it's help, but it's a
partnership where you want toget your dogs, working and then
you feel good going forward, so,and you have that security that
you're eating safely.
Amanda Whitehouse (35:02):
Yeah.
Well thank you for sharing thatwith everyone.
I will put it again in thenotes, but Tell people where
they can follow you if theydon't already.
Kendra Williams (35:08):
It's at Suki, SUKI.
PWD for Portuguese.
Water dog all over.
So Instagram, TikTok, Facebook,YouTube, you name it, it's Suki,
PWD.
Amanda Whitehouse (35:21):
They can just follow you and live vicariously
like I get to
Kendra Williams (35:24):
Absolutely just follow along and, and I share
lots about living gluten-freewith a gluten detection dog.
So I have cute Suki doing allher things, but then I share
facts and I also share lots ofstuff.
For people than to educate theirfriends or family members and
things like that.
'cause sometimes it's easier toshare something that somebody
else has prepared to go, Hey,here, this is important.
(35:46):
If you have celiac disease, foodallergies, definitely follow
along and hopefully you'll getsome good things and let me know
what you wanna see more of.
I love that too.
Amanda Whitehouse (35:56):
Perfect.
Thank you so much for sharingeverything you do on social
media and for joining me on thisshow.
I love hearing about
Kendra Williams (36:02):
Awesome.
Thank you so much, Amanda.
It's been a pleasure.
I hope you found today'sconversation as fascinating as I
did.
Living with Celiac requiresconstant vigilance and tools
like gluten detection dogs canmake so much difference in
safety and peace of mind.
I love hearing about thedifferent and creative tools
that people come up with formanaging their own medical
needs.
Here are three action steps youcan take after listening today.
(36:25):
Number one, follow Kendra andSuki to learn more about what
life with a gluten detection doglooks like day to day.
She's at Suki PWD orS-U-K-I-P-W-D.
Number two, explore othercommunity resources online
Create a community that'svalidating and that's
supportive, and has theexperience necessary to give you
ideas and tips from their ownlives that might be helpful for
(36:47):
you.
It'll help you feel so much lessalone.
There are amazing celiac forums,support groups, social media
spaces where you can findencouragement and connection.
And number three, check outin-person communities or events.
One that's coming up is theWicked Gluten-Free Expo in
Fitchburg, Massachusetts onSeptember 20th.
I'll be there speaking about themental health aspects of living
(37:07):
with Celiac.
And living a gluten-freelifestyle and the role of the
nervous system and how to manageit.
If you're nearby, I would loveto meet you there.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
If you have any questions aboutyour own medical experience or
(37:27):
mental health needs, pleaseconsult a professional.
I'm Dr.
Amanda Whitehouse.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
CrimeLess: Hillbilly Heist
It’s 1996 in rural North Carolina, and an oddball crew makes history when they pull off America’s third largest cash heist. But it’s all downhill from there. Join host Johnny Knoxville as he unspools a wild and woolly tale about a group of regular ‘ol folks who risked it all for a chance at a better life. CrimeLess: Hillbilly Heist answers the question: what would you do with 17.3 million dollars? The answer includes diamond rings, mansions, velvet Elvis paintings, plus a run for the border, murder-for-hire-plots, and FBI busts.