February 13, 2025 • 30 mins
Imagine having your entire world shift because of something as common as bread. Lina joins us to share her incredible journey of living with celiac disease for over 23 years, navigating the complexities from her teenage years through adulthood. Her story is a poignant reminder of the importance of understanding and managing this autoimmune disorder, as she candidly discusses the initial confusion and challenges she faced, including chronic migraines and the social hurdles during occasions like Halloween. Lina's experiences highlight the necessity of a strict gluten-free diet to prevent malnutrition and the vigilance required in avoiding hidden gluten sources.
Discover the ins and outs of celiac disease diagnosis through Lina's personal anecdotes, from mysterious health issues in childhood to the eventual diagnosis that explained her persistent symptoms. She recounts her struggles with chronic headaches and stomach pains, leading to numerous doctor visits and the eventual realization that opened the door to managing her health. Her encounter with a teacher, who first introduced her to the concept of celiac disease, underscores the power of awareness and the critical role it plays in understanding one's health journey. This episode uncovers the distinctions between gluten intolerance, allergies, and how each impacts social interactions, especially when dining out.
Lina also tackles the frustrations with misconceptions around gluten-free diets, highlighting the challenges faced when others perceive it as a fad or a weight loss strategy. We delve into why it's essential to differentiate between those who genuinely need a gluten-free diet for medical reasons and those choosing it as a lifestyle choice. Moreover, the episode emphasizes the importance of self-advocacy and being attuned to your health and the health of loved ones. Through Lina's story, we encourage listeners to trust their instincts, seek accurate diagnoses, and advocate for themselves, backed by the support of family and informed choices. Join us in this enlightening episode that offers comfort, guidance, and a sense of community for anyone impacted by celiac disease.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nikita (00:01):
Hi, I'm Nikita and I'm Lina.
We're two best friends withendless curiosity and plenty to
say.
Lina (00:07):
Join us as we dive into everything and anything life
throws our way
Nikita (00:10):
From hilarious stories and pop culture, hot takes to
life lessons and deep dives.
No topic is off limits.
Whether you're looking for alaugh, a new perspective or just
some fun company, this podcastfeels like a chat with your
bestie.
Lina (00:24):
Get ready for unfiltered conversations, lots of laughs
and a whole lot of heart.
This is Two Voices, one Vibe.
Nikita (00:37):
And we're back.
Welcome back to Two Voices, OneVibe.
Today's episode is going to beabout celiacs and we're gonna
talk to Lena here about herjourney getting diagnosed, her
symptoms that she experiencedand what life is, in general,
dealing with celiacs right?
Lina (00:56):
Yeah, I think a lot of our listeners and viewers might be
able to relate, since this hassince blown up.
It's been 23 years that I'vebeen struggling with this
disease, but I know it's beenthat long.
It's been that long beforepeople even knew what celiacs
was.
So we'll cover all of that.
But hopefully some people willbe able to relate Once it's kind
of in the front of your mindand you know somebody who has it
all of a sudden you start tosee oh this is gluten-free,
(01:26):
that's gluten-free you kindastart to see it everywhere.
Nikita (01:26):
And its not just a fad thing, I know I've ventured down
the gluten-free rabbit hole,but not for the reasons that you
have to be gluten-free.
So I want to just kind of focustoday specifically on celiacs.
And I want to start with maybeyou can explain to our viewers
and our listeners what exactlyis celiacs.
Lina (01:48):
Yeah, absolutely so.
Celiac disease is an autoimmunedisorder and what it does is it
attacks your villi.
So somebody who is glutenintolerant which is different
than an allergy so anintolerance is somebody whose
body literally cannot break downgluten.
So gluten is a protein that'sfound in wheat, rye barley, all
sorts of different types ofgrains, and what it does is it
(02:11):
breaks down your villi.
So villi are these small,hair-like projections that are
on your small intestine and whatthe villi do is normally they
absorb the vitamins andnutrients from the food that
you're eating so that you'renourished.
But somebody who has celiacdisease confirmed celiac disease
not just kind of you know, anaversion to gluten, but an
actual intolerance is theirvilli cannot break down the
(02:33):
gluten and the gluten kills thevilli, so the villi die.
It takes seven days for them tobe regenerated and the only way
they are regenerated is ifthere's no gluten in your body.
So you have to be on a completegluten-free diet.
So for those seven days, asthey're trying to grow back,
your body's malnourished andmalnutritioned and you're really
not getting any of the vitaminsor nourishment that's coming
(02:53):
from the food that you're eating.
Nikita (02:55):
Okay, and now my question to you is for somebody
who is not educated to the wayyou are on gluten what is gluten
?
Lina (03:04):
Okay.
So gluten is actually theprotein itself, and the easiest
way to explain it is it is whatmakes things sticky in dough,
right?
So a lot of times when you tryto have anything that is
gluten-free, you're like wow,this is really crumbly, it's
falling apart.
Whether it's cookies, whetherit's pizza crust, whether it's
bread, it's really crumbly.
So gluten is a protein that issticky and you can actually buy
(03:24):
it in the grocery store.
It's pretty funny.
Oh, I didn't know that.
When you walk down they have an entire bag.
It's like vital wheat glutenand I'm like, wow, it's a whole
bag of exactly what will kill me.
So it's what helps make thingssticky.
But gluten is found in so manydifferent products.
So a lot of times you thinkcarbs, you think things like
that cookies, cakes but it'salso found in things that you
(03:45):
would never even think.
So there's wheat in soy sauceand a lot of different sauces or
soups that people make whenthey kind of create a roux with
flour.
You can't eat that.
Anything that is breaded, friedchicken, any types of gravy,
anything like that.
So it's really difficult.
It's hidden in a lot ofdifferent things that you think
it wouldn't be hidden in Chinesefoods, thai food, because they
(04:05):
use a lot of soy sauce andthings like that.
So you have to be reallyvigilant in knowing what you can
and can't eat and kind ofworking your way around it.
Nikita (04:12):
Do you find it difficult to avoid gluten?
Lina (04:16):
Not anymore.
So when I was first diagnosed,I was 14 years old and my
diagnosis actually came down onHalloween.
Nikita (04:22):
Oh my goodness, really
Lina (04:22):
I couldn't even eat anything.
So I didn't even gotrick-or-treating because I was
like I'm not even going to knowwhat I can and can't eat.
So for probably the first twoyears or so my parents were
really good at making thingsthat I was comfortable eating
and that I liked, but we didn'tventure too far because we
didn't really know what we couldor couldn't do and at that time
you couldn't just go to thegrocery store and buy
gluten-free pasta or gluten-freebread, because it wasn't a
(04:44):
thing.
We went to restaurants and wewould ask to speak to the chef
and the chef would come out andsay I can't have gluten.
And he'd go, oh, there's nosugar in here.
And I'm like, well, that'sglucose, and now I'm going to
die.
I'm definitely not going to eathere.
(05:09):
Because if you're the chef youdon't know the difference I am
not going to eat here andknowing what to look for and
knowing what hidden gluten lookslike, and you know hydrolyzed
wheat, protein and the differenttypes of words that you're
looking for differentanti-caking agents so, believe
it or not, some of the differentlike paprika, onion powder,
garlic powder they put differentcaking agents to make sure that
they don't ball up those spices.
Some of those can have glutenin them.
So now that I know what I'mlooking for, and I've been
dealing with this for more thanhalf of my life.
At this point I'm just so usedto it, so it's second nature to
me.
But to somebody who's justrecently diagnosed, I can see
(05:29):
how it could be really scary andreally overwhelming to try to
figure out what you can and whatyou can't eat?
Nikita (05:33):
Yeah, absolutely so.
Why don't you tell us before weget into you getting diagnosed,
why don't you tell us what someof your symptoms were that made
your parents and you, for thatmatter, even ventured down the
road of going to the doctor andtrying to figure out what was,
quote, wrong with you?
Lina (05:51):
Yeah, so I had a slew of symptoms, and celiac disease is
one of those interesting thingswhere it could present itself in
a number of different ways.
So some of the things that Iwas struggling with was really
bad migraines.
Nikita (06:02):
Okay.
Lina (06:03):
I would get these migraines to the point that I
would have to go to sleep.
They were so painful and Iwould just kind of black out for
a couple hours and I wouldn'teven remember what happened
because the pain was so intense.
I would also have really badgastrointestinal issues.
So between having diarrhea,having gas, vomiting after I'd
eat, the cramps were so intense.
The only way that I could bestdescribe them is what
contractions are like whenyou're having a baby
(06:25):
oh, wow, okay.
So like literally the muscles in your stomach start to
tense up and you can't move.
It even hurts to breathe,
oh, wow.
So most of the time I'd be laying on the floor or laying
on my bed in the fetal positionon my left hand side I would a
lways get sick after lunch,because what does every kid eat
(06:45):
for lunch at school?
Nikita (06:45):
Sandwiches,
sandwiches, every day Right.
Yeah, so every day, you know,within half an hour after lunch,
I'd be at the nurse's officeand the nurse is always asking
me what class do you have afterlunch that you don't want to go
to?
Why are you always in my office?
Right,
Lina (06:59):
Because I'm sick.
You know the same thing.
After dinner, my brother and Iwould always have to switch off
different chores.
So, whether it was cleaning thetable or doing the dishes or
taking the garbage out, I'dalways be in the bathroom when
I'd be sick and my father wouldbe like.
You know, Lina, it's not fairto your brother that you're
always in the bathroom beingsick while he has to do all the
chores and I'm like, but I'mactually sick.
(07:20):
So my mom was really the onlyperson that believed me and she
said I know my kid Um, and shestarted taking me to different
doctors to try to diagnose me.
Nikita (07:26):
And at this point, this is when you were 14?
No, this was when I was eight.
Okay, so this started way back when you were young,
Lina (07:31):
yeah, so all the pain and different issues started when I
was eight.
Um, and at the time I remembermy mom saying to me you need to
tell me what hurts worse Is ityour head or is it your stomach?
Because we can't focus on both,because we've been going to all
sorts of different doctors andspecialists up and down the East
coast trying to figure out whatwas going on.
Um, so at that point I told mymom.
I said you know, the headachesare probably the worst part,
(07:52):
because I kind of black out andI'm not even present.
I don't even have anyrecollection of what's going on.
The stomach pain is awful, butat least I'm conscious.
So my mom started taking me todifferent neurologists and they
basically diagnosed me withchronic daily migraines.
So they put me on apreventative medication that I
would take every day to try tokeep the migraines at bay and
then when a migraine would comeon, I would take this other type
(08:13):
of pill that would try to stopit in its tracks.
So I was kind of really dopedup on this medication.
It was pretty high dose stufffor adults when I was eight
years old and it really did helpwith my migraine.
So it really kind of stoppedthat piece of it.
But then my stomach was justgetting worse and worse and
worse.
Nikita (08:28):
Oh, my goodness, that just sounds absolutely terrible
and I don't know, um that Iwould want to deal with that.
So kudos to you and your momfor being able to manage that.
Um, now, after experiencing allthese symptoms, did you or your
mom maybe not so much your dad,but was celiac even on the
(08:50):
radar?
Or were they just thinking youknow you were playing or you
know making it up, or anythinglike that?
Lina (08:56):
So a lot of these different doctors were thinking
different things.
So some doctors thought that Iwas lactose intolerant, so we
had, you know, tests and allsorts of stuff for that.
.
But, being with the type ofcuisine that I grew up with, I
was eating a lot of things thathad sour cream and cheese and
things of that nature and thatnever seemed to bother me.
So they did test me for lactoseintolerance.
That wasn't it.
I did have some people tryingto tell my mom that I had an
(09:18):
eating disorder and then I wasmaking myself grow up and I was
making myself sick and my momwas saying no, I know my kid.
I know my daughter.
She likes to eat, she enjoysfood, and she's not doing that.
That's not what it is, andthere were some people who were
just kind of saying it's abehavioral thing, we can't help
her,
okay.
So it wasn't until years later when I finally went to a
gastroenterologist and I startedgetting tested for all sorts of
different stuff, but celiacdisease was never at the top of
(09:39):
the list.
Nobody actually knew whatceliac disease was back then,
because this was back in theearly 2000s where it really
wasn't that prevalent and itreally wasn't on anybody's radar
.
So I hadn't even heard of theterm celiac disease until my
freshman year of high school.
And you were about how old atthis point?
I was about 13 years old,
okay.
So back then it was totally socially acceptable for
(10:01):
kids to bring in cupcakes andcakes and different things to
celebrate your birthday, whereasnow everything needs to be, you
know, nut free, allergen free,this free, so you?
My kids aren't even allowed tobring in food.
Yeah, who can't even go intothe school anymore?
So back in my freshman year ofhigh school somebody had come
into my English class withcupcakes for their birthday and
was passing out the cupcakes andI remember my English teacher
(10:21):
declining a cupcake and I'm likehow could you say no, it's a
cupcake.
And she's like, oh, I can't eatit.
You know.
She's like I have somethingcalled celiac disease and I said
, well, what's that?
And so she kind of explained itin layman's terms a little bit
and basically said you know, Ican't have flour or wheat, and
you know I'm basically allergicto it, which isn't you know the
right nomenclature, but inlayman's terms I can understand
this, this
Right to dumb it down, so tospeak, for a 13, 14-year-old.
(10:45):
Right and I remember saying to her oh my God, I would
never be able to do that.
If I did that, I would just eatit anyway, because I wouldn't
know how to live without it.
Not knowing that this isactually what I was within a
year of being diagnosed with andstruggling with.
Nikita (11:00):
Oh my gosh, that's just crazy.
So you went to agastroenterologist.
I can't even say the word Agastroenterologist,
gastroenterologist
Yep, that one too.
Lina (11:08):
Yep, I did so.
We had been going tospecialists all up and down the
East Coast, as I was mentioning,and it was actually a GI in my
hometown where I grew up whodiagnosed me.
Okay, and how did they go aboutdiagnosing you?
So it was a bunch of different tests that I ended up
having Back then again, becausethis was so fresh and this was
so new, they didn't do a bloodtest first to see if you had
(11:30):
genetic markers, which would bethe first step nowadays, and so
back then, they actually sent meas a 14 year old girl For I
didn't ask me I had to enterOscar bees and I had a
colonoscopy.
Nikita (11:41):
Oh my god.
So these were all reallyinvasive procedures where I had
to drink laxatives, I had to getcleaned out before I went to
the hospital for theseprocedures to get tested.
They would take biopsies of mytissues in my bowels and my
small intestines and they wouldbasically test to see what was
going on.
They were looking for parasites, they were doing blood work,
they were doing all sorts ofthings.
So when the very first testcame back, my numbers for celiac
(12:07):
disease were so high off thecharts that they said this can't
be.
We need to repeat the testbecause the numbers are skewed.
So I said, okay, do I need toprepare?
Do I need to fast?
Do I need to do anything?
No, no, no, just come back,keep eating whatever you're
eating and come back.
back.
So it took them testing me fourseparate times with four
separate biopsies to come back,and it was Halloween when I was
(12:29):
14 years old.
I was a sophomore in highschool.
They came back and said yep,you have celiac disease.
And I remember thinking whatexactly is that?
I had heard the term because ofmy English teacher a year prior
, but I didn't really know whatit was, and my GI was learning
with me because I was the veryfirst person that he diagnosed.
Oh, my goodness, that's crazy.
So now you get diagnosed withthis celiac that we don't know
(12:52):
what is essentially.
How does your life change atthat point?
Lina (12:58):
So obviously dietary, it changed huge.
I didn't know what I could orcouldn't eat.
So potatoes everybody who knowsme, potatoes are my favorite
food in the whole wide world Iknew I could eat potatoes so
that made me super happy.
I also knew that I could eatmeat and fish so long as they
weren't prepared with any sortof breading or breadcrumbs or
anything like that.
So for probably about the firsttwo years I was eating meat,
(13:20):
fish and potatoes and vegetables.
But aside from that, socially itchanged because whenever you go
to school and it would be, youknow, a Friday hey, we're having
a pizza party or hey, it'ssomebody's birthday, here's cake
.
So I was always kind of left outof those things.
And what ended up happening ispeople started to feel bad, and
it still happens to this daywhere someone said, well, I
don't want to eat that in frontof you and make you feel bad.
Now it's like please, I've hadthis for so long, it doesn't
(13:40):
even phase me, I'm not evenmissing it at all, you know.
But back in high school it wasa really weird feeling.
And I remember the very firstfield trip that we went on my
sophomore year, um, and we wentto the courthouse and we I was a
criminal justice student, oneof the criminal justice classes
so we went to go watchsentencing and afterwards we all
went to mcdonald's and Iremember thinking like, oh, it's
(14:01):
okay, you know, I'll just get aburger without the bun or
something.
And I remember each kid goingup and ordering and I waited
till the end and I was with myteacher who was going to pay for
everything.
So at the very end I went upand I said you know, I'd like to
have a cheeseburger without abun.
And I remember looking at me gowhat?
And I'm like cheeseburger w Iw I wheeseburger heeseburger ca
, but I just don't want thebread.
I'm like, well, why don't youwant the bread?
And I'm like, well, because Ican't eat the bread.
(14:21):
And they're like, well, can'tyou just take it off?
And I'm like, no, I can't takeit off.
And they're like well, we don'thave a button on our screen to
say no bun.
I'm like, okay, well, the otherstudents are there and
(14:43):
everybody's looking andeverybody's wondering like,
what's going on and why are youmaking a big deal?
and I started to feel reallyuncomfortable at that point
because now all the attention'son me and I don't want everybody
to know what's going.
What's going on?
And then people start askingall the questions well, what
happens if you eat it?
Are you going to die, you know?
And it just becomes this thingthat you don't want focused in
on you, sureAnd I remember my teacher just
going up to the person with mythumbs and going, can you just
hand her the hamburger in herhand?
Like what do you need to do tomake this happen and not make
this kid feel bad?
(15:03):
Right, and I just remember atthat point being like I don't
even want to eat.
So those were kind of like thebiggest hurdles to get through.
And then answering thosequestions whenever you were in a
social situation where youcouldn't eat anything.
And then everybody feels thatI'm so sorry, I no, I didn't
make you anything.
Well, I can get you something.
Do you want me to get yousomething?
(15:23):
And then you feel bad becauseyou feel like you're putting
them out.
And then it just kind of becamethis thing where I always eat
before I go anywhere, so that'skind of my thing.
And then people are like, well,why aren't you eating?
Why aren't you eating?
And then it becomes you know,are you dieting?
Nikita (15:45):
Not even gluten intolerance.
It's essentially an allergy,correct.
Lina (15:49):
So the difference between an allergy and an intolerance is
that an allergy can becounteracted.
So think about somebody who hasa peanut allergy and they have
an EpiPen.
So their epinephrine basicallyundoes the damage done by the
allergen.
So you kind of get a shot inthe leg or you get the shot in
the nose.
Now they have the nasal sprayand somebody is better, Somebody
(16:11):
who has an intolerance.
There's nothing that cancounteract it.
So there's no pill that I cantake.
There's no epinephrine that'sgoing to make it better.
Basically, it needs to run itscourse.
Nikita (16:17):
So you have an intolerance, not an allergy.
Lina (16:19):
Correct Okay.
So a lot of times I'll justtell people know I can't have
flour or wheat because I'mallergic to it.
But, people who actuallyunderstand it know it's a gluten
intolerance.
Nikita (16:28):
Right, okay Now, with you said, you've been dealing
with this, obviously sinceyou're 14 years old, how
difficult is it for you to goout to dinner with friends and
find something to eat?
Lina (16:40):
Yeah, so now I pretty much figured it out.
I mean, anywhere I can go, Icould really even get a salad,
if that's really all I can do.
But the most frustrating partis places that just aren't
educated about it.
And when you ask them, you knowdo you have a gluten-free menu?
Or is there somebody who couldtalk to you about gluten-free
options?
Like, well, you can have salad.
I'm like, okay, but you alsohave grilled chicken, so I can
have that too.
And you also have steak, so Ican have that too.
And like, hmm, are steaks notgluten-free?
(17:00):
And I'm like, really, do youflour your steak?
Like what do you do?
I'm not asking about sauces orgravies, I'm just talking about
the meat itself.
Right, so just the people whoare not educated about it.
You know, and I feel like youshould know, so that part can
get a little frustrating, but Ican always find something that I
can eat.
Now you see a lot of you knowthe major chain restaurants have
(17:25):
gluten-free menus or you'll seethey'll have like a little GS
for gluten sensitive.
Most places won't call itgluten-free because you don't
want to say anything is free ofgluten with cross-contamination.
So there's a certain standardthat you have to have making
sure there's a certain parts permillion of gluten that are not
in the food in order to beconsidered gluten-free.
So a lot of places won't makethe claim that it's gluten-free
but they'll say these are madewithout gluten-containing
(17:47):
ingredients or this is safe forsomebody who is sensitive to
gluten.
Nikita (17:53):
For someone who has celiacs like yourself.
If you eat something that isgluten-sensitive, are you okay
with that or will you steerclear of something like that?
Lina (18:05):
Yeah.
So it's really a judgment call.
There are some things that areno-go.
So you're not supposed to eatanything that's prepared in a
shared fryer.
So let's say you go to a fastfood place and they fry French
fries which would normally begluten-free, with chicken
nuggets which are breaded right.
So you're not supposed to eatthat because it's in the same
type of oil.
But let's say they use an ovenwhere they're baking things that
(18:28):
have gluten versus bakingthings that don't have gluten.
You know.
So you really are supposed tosteer clear of any of these
things, but you need to live.
So you know I kind of take mychances.
Every three years I have to goback to the GI and I have to
have these tests to see how myinsides are looking, because,
basically, repeated exposure togluten can do different things
to your insides.
(18:48):
So even if you're not feelingit or you don't know about it,
you know you can have ulcers,you can have inflammation in the
lining of your stomach, itcould lead to diabetes, it could
lead to esophageal cancer.
So it can do all sorts ofissues and damage to your
insides.
And because I've had it so long, they don't know what the
long-term effects of celiacdisease are because people have
really just been gettingdiagnosed within the last 10, 15
(19:08):
years and I've had this over 20years now.
So they're doing differentsorts of tests on me to
understand what are the types ofthings other people may have to
deal with in the future whenyou've had prolonged exposure to
gluten.
For two plus decades.
Nikita (19:20):
That's crazy.
So now that you've beendiagnosed with the celiacs for
so long, do you have a go-tolet's say, pizza that you enjoy,
or a go-to restaurant that youenjoy that you don't have to
think twice about?
Lina (19:37):
Yeah, so there's a lot of different places that have full
on gluten-free menus.
There's actually a place aboutfive minutes from where I work
and it's an entire gluten-freerestaurant.
Nikita (19:47):
Oh nice.
Lina (19:47):
Anything I want on the menu I can eat, which is amazing
.
And you don't have to worryabout it, don't think about it.
I don't have to worry about anything.
They bring bread to the table.
It's gluten-free bread, youthat has a sauce gluten-free,
all the pastas gluten-free, allthe desserts are gluten-free.
It's almost like me going toDisney World.
Nikita (20:02):
Nice
Lina (20:03):
I can have anything I want , which is incredible.
So those are really my favorite.
And then a lot of the chainrestaurants.
They now have gluten-freeoptions, so they'll have
gluten-free buns for sandwiches,things like that, or you know,
they'll list that something canbe modified to be made to be
gluten-free.
So that's amazing.
I figured out all my differentfavorite brands of pasta, my
favorite brands of bread, myfavorite muffins.
(20:23):
Oh my gosh, shout out to TraderJoe's.
They have the best gluten-freemuffins in the world.
There's cinnamon coffee cakemuffins and I don't eat coffee.
I don't like coffee.
There's actually no coffee inthem.
You can't eat coffee,
yeah Well.
I mean anything coffee flavored,right, so like a tiramisu type
thing, or um you know, coffeeflavored ice cream, or even like
espresso martinis.
I don't like the flavor ofcoffee.
Oh, it totally grosses me out.
(20:45):
Um, but I've read theingredients and there's no
coffee in it.
I think they just call itcoffee.
Yeah, like a coffee yeah oh,it's my jam best things ever um
what about pizza.
so pizza, shout out to domino's, the first major chain
that has gluten-free pizza,which is amazing.
The pizza is actually reallygood too.
They do have a disclaimer thatsays you should not eat it if
you have celiac disease becauseit's prepared in a common
(21:06):
environment with other things.
But it's the same thing if yougo to your local pizzeria and
they have gluten-free pizza,they're making regular pizza too
.
So you really do need to useyour best judgment and see how
it affects you, becausesometimes you have people like
my brother.
My brother has cell life diseaseas well, but he's asymptomatic,
so he doesn't feel any of thesymptoms, but he has the same
internal damage that happens tohim.
So, depending on yoursensitivity level, you may not
(21:27):
know that you're being glutenedwhen you are.
I'm actually very sensitive toit.
So if I were to get Domino'sand somehow there were some bad
cross-contamination within 20minutes of me eating, I would
know for sure I've been glutened.
But knock on wood, I have notgotten sick of eating Domino's
pizza.
I will order it when the hungerstrikes at 1230 at night and I
will eat some gluten-freebuffalo chicken pizza in my bed,
(21:49):
and nothing makes me happier.
Yeah, pretty amazing.
Nikita (21:55):
What are some pet peeves of yours regarding celiacs and
the way people you know justinteract with you or interact
with people in general who haveceliacs?
Lina (22:07):
so my absolute biggest pet peeve is when somebody finds
out what I have and I tell themand they're like, wow, so you
can't eat cake, you can't eatpasta, you can't eat bread, you
can't have desserts, and they'relike, wow, I wish I had that
because I'd be thinner.
Oh, that's just insensitive.
It's I think it even is a step above insensitive and it's
just ignorant, you know, becausethis is an autoimmune disease,
(22:28):
right?
So it's like having diabetes.
Do you also wish you haddiabetes so you couldn't have
sugar?
Why don't you just wish you hadsome like willpower and some
self-control so you can justwatch what you're eating if you
want to be healthier?
Or why don't you startexercising if you think that's
what you're eating if you wantto be healthier, or why don't
you start exercising if youthink that's what you need?
But to say that you wish youhad something that you know I'm
going through that causes awhole host of other issues.
And it's related to a lot ofthings.
Nikita (22:46):
They don't know how miserable you feel when you do
get gluten.
Lina (22:50):
Right and the effects that it's had and the surgeries that
I've had because you know it'seaten at the lining of my
stomach, because I ended uphaving a hiatal hernia that
needed to be repaired, anddifferent things that have
happened over the years becauseof celiac disease.
So yes, it's very insensitivebut it's also pretty ignorant to
say something.
So that's like my biggest petpeeve.
My other one is when peoplethink they are gluten-free but
(23:11):
they're really just doing itbecause they think that it's
gonna be healthier.
And you have to think gluten,like I was explaining earlier,
is the sticky part that holdsthings together.
So when you don't have that andyou're trying to make a
gluten-free pretzel or agluten-free bread or a
gluten-free cookie, you'reputting a lot more crap in there
to get it to stick together.
So it's not essentiallyhealthier when you're doing a
gluten-free replacement ofsomething that naturally has
(23:34):
gluten in it.
It's never healthier Eatinggluten-free and just eating
healthier in general.
So things that are naturallygluten free, sure that's healthy
, because you're eating meat,you're eating fish, you're
eating vegetables, you're eatingeverything kind of plain and
raw like a regular raw diet.
That's one thing.
But when people are going outand buying gluten free bread and
saying I'm doing this becauseit's healthier.
That's not healthier andthey're just not educated about
(23:54):
it.
And people like that make itharder for people like me who
actually have celiac disease,because you know they'll take
bread off of something andthey'll eat the inside.
When I can't do that, and whenI tell somebody, you know, if a
server brings something to thetable and I said I'm so sorry
that I asked for it without thebread because I can't eat it,
for them to just kind of take itoff in the back and bring it
back to me and I don't know nowbecause they saw somebody else
(24:15):
do that and it was okay for them, but they didn't actually have
celiac disease like I do.
So those are kind of my twobiggest issues People who are
making it seem like it's a faddiet or it's really not that big
of a deal.
And then the people saying, well, I wish I had that, because I
wish I was thinner, I wish I washealthier, I wish whatever it
might be.
Nikita (24:29):
Right.
Do you have any otherrecommendations or ways to go
about bringing it up to their topeople's doctors if they think
they might have, whether it beceliac or just another kind of
GI issue?
Yeah, how would you go aboutbringing that up to your doctor?
Lina (24:50):
Absolutely so with celiac disease in particular, it's
genetic, so it's, you know,somewhere in the family line.
The only thing that's reallydifficult is because it's now
just starting to really becomepopular is you might not know if
your grandparents had it beforethey passed, because they had
never been tested for it.
So if you are interested ingetting tested for celiac
disease, the number one mostimportant thing is to not stop
eating gluten,
(25:11):
really?
Yes, because it takes seven days for gluten to be
entirely out of your system.
So if you stop eating glutenfor a month and you're like, wow
, I feel great, I should gettested and see if this is what
it is, and you have no gluten inyour system and you get tested,
there's no gluten for your bodyto detect.
There's no issues going on inyour body because for those
seven days that it's been out,your body's been healing itself.
So there's no way to detect youhave a problem.
(25:31):
So if you really do think youhave a problem with gluten and
you want to get a blood test, sothere's two different genetic
markers that you would gettested for.
So if you have the possibilityof having celiac disease, you
would have to have at least oneor both of those markers.
If you don't have either ofthem, it doesn't even make sense
(25:53):
to go further and have a biopsydone, because you can't
possibly have it without havingone of those two markers.
Now it's totally possible thatyour blood work comes back and
you have one or both of thosemarkers.
Your celiac disease may not beactive.
So basically, my daughter shewas having some stomach issues
so we had her tested.
She has both of the markers forceliac disease.
She had the biopsy done and herceliac disease is not active.
(26:14):
So it could be at some point inyour life where you have some
major life changes.
You could go through stress, youcould go through puberty, you
could go through stress, youcould go through puberty, you
could go through menopause, youcould have a baby.
It could be something majorthat happens to your body that
activates the celiac disease.
Okay, so you can have both ofthose markers and live your
entire life and it never becomeactivated or it could become
active at some point.
So luckily, my daughter she's16 now.
(26:35):
She doesn't have any symptoms,her celiac disease isn't active,
she has those two markers.
So it may happen one day forher.
Sure,
I pray to God it doesn't
Absolutely,
but that's the first step.
So I would just say you know,don't stop doing what you're
doing, go get your blood workdone.
If you have those markers, kindof take it from there.
Nikita (26:50):
Yeah, that's crazy.
Now, if it's okay with you, Iwant to invite our viewers on
YouTube and our listeners, ifthey have questions, that they
can definitely reach out,whether it's via email, at to
the number two voices one, thenumber one, vibe, at gmailcom.
You can also find us onInstagram and on TikTok ,
(27:13):
excuse me, at two voices, onevibe.
Again, that's the number twoand the number one, and Lena can
get back to you with anyquestions and if she doesn't
have the answer, you know we candirect you to your doctor,
because neither one of us aredoctors.
Granted, you've dealt with thisyour almost entire life at this
point, but we're not givingmedical advice?
Yeah, we're not giving medicaladvice.
(27:35):
You know we're just sharingLena's story because she's been
through so much, you know, andwe've been friends now eight,
nine years and it's an ongoingjoke between us.
But we have that relationshipwhere you know I can turn around
and say to her don't eat this,you're going to die.
Yeah, you know, but I don't dothat to just anybody.
So if you're having theseissues, definitely reach out to
(28:02):
your doctor, get yourself tested.
If you have questions, again,you can email us.
Catch us on TikTok or onInstagram.
Lina, do you have anything elseyou might want to say or
suggest or anything else ingeneral regarding celiacs and
being gluten-free and whetherit's whatever you might have?
Lina (28:19):
Yeah, so, just as an aside , I know I shared some of the
symptoms that I have, butceliacs can present itself in a
wave of symptoms.
So I've met people who getseizures from having celiacs.
I've met people who get skinissues.
They develop psoriasis.
So even if you know you'reexperiencing something very
different than the way that Iexplained it, it still may be
celiac presenting in a differentway.
Um, so, you know, don't thinkthat just what I went through in
(28:42):
my story and how I experiencedit is, you know, comprehensive
of the ways that celiac canpresent itself.
So there, are different ways.
And then if anybody is newlydiagnosed or they're looking to
be, you know gluten-free orsomebody in their family is and
they want to make something, Ihave really great ideas for
recipes my favorite brands ofpasta, my favorite desserts,
some of my favorite restaurantsso happy to share any of that
(29:05):
information.
If anybody wants to send anemail, as Nikita had mentioned,
the number two voices, thenumber one vibe at gmailcom Be
happy to share all myrecommendations and just want
everybody to stay healthy andstay safe and make sure that if
there's anything going on andyou know it's not you be your
biggest advocate and be yourbiggest cheerleader.
Because if it weren't for mymom pushing the doctors and
pushing my dad and pushing theschool nurses and pushing
(29:25):
everybody who said you know, no,your daughter's fine, there's
nothing wrong with her who knowshow long it would have taken
until I was diagnosed and whoknows how much worse things
would have been by the time thatthey caught it?
Yeah, absolutely so make sureyou're listening to your kids.
Make sure you're listening toyourself.
Nobody knows your body betterthan you do.
Nikita (29:38):
That's the truth and you know I say that all the time.
Yeah Well, thank you forsharing your story with us.
Thank you, guys for listening
and again, if you have any questions, you can email us
at two voices one vibe atgmailcom, and you can catch us
on Instagram and on Tik TOK atat two voices, one vibe until
next time.
This has been Lina and Nikitaon two voices, one vibe.
(30:01):
See you next time.
Hi, I'm Nikita and I'm Lina.
We're two best friends withendless curiosity and plenty to
say.
Lina (00:07):
Join us as we dive into everything and anything life
throws our way
Nikita (00:10):
From hilarious stories and pop culture, hot takes to
life lessons and deep dives.
No topic is off limits.
Whether you're looking for alaugh, a new perspective or just
some fun company, this podcastfeels like a chat with your
bestie.
Lina (00:24):
Get ready for unfiltered conversations, lots of laughs
and a whole lot of heart.
This is Two Voices, one Vibe.
Nikita (00:37):
And we're back.
Welcome back to Two Voices, OneVibe.
Today's episode is going to beabout celiacs and we're gonna
talk to Lena here about herjourney getting diagnosed, her
symptoms that she experiencedand what life is, in general,
dealing with celiacs right?
Lina (00:56):
Yeah, I think a lot of our listeners and viewers might be
able to relate, since this hassince blown up.
It's been 23 years that I'vebeen struggling with this
disease, but I know it's beenthat long.
It's been that long beforepeople even knew what celiacs
was.
So we'll cover all of that.
But hopefully some people willbe able to relate Once it's kind
of in the front of your mindand you know somebody who has it
all of a sudden you start tosee oh this is gluten-free,
(01:26):
that's gluten-free you kindastart to see it everywhere.
Nikita (01:26):
And its not just a fad thing, I know I've ventured down
the gluten-free rabbit hole,but not for the reasons that you
have to be gluten-free.
So I want to just kind of focustoday specifically on celiacs.
And I want to start with maybeyou can explain to our viewers
and our listeners what exactlyis celiacs.
Lina (01:48):
Yeah, absolutely so.
Celiac disease is an autoimmunedisorder and what it does is it
attacks your villi.
So somebody who is glutenintolerant which is different
than an allergy so anintolerance is somebody whose
body literally cannot break downgluten.
So gluten is a protein that'sfound in wheat, rye barley, all
sorts of different types ofgrains, and what it does is it
(02:11):
breaks down your villi.
So villi are these small,hair-like projections that are
on your small intestine and whatthe villi do is normally they
absorb the vitamins andnutrients from the food that
you're eating so that you'renourished.
But somebody who has celiacdisease confirmed celiac disease
not just kind of you know, anaversion to gluten, but an
actual intolerance is theirvilli cannot break down the
(02:33):
gluten and the gluten kills thevilli, so the villi die.
It takes seven days for them tobe regenerated and the only way
they are regenerated is ifthere's no gluten in your body.
So you have to be on a completegluten-free diet.
So for those seven days, asthey're trying to grow back,
your body's malnourished andmalnutritioned and you're really
not getting any of the vitaminsor nourishment that's coming
(02:53):
from the food that you're eating.
Nikita (02:55):
Okay, and now my question to you is for somebody
who is not educated to the wayyou are on gluten what is gluten
?
Lina (03:04):
Okay.
So gluten is actually theprotein itself, and the easiest
way to explain it is it is whatmakes things sticky in dough,
right?
So a lot of times when you tryto have anything that is
gluten-free, you're like wow,this is really crumbly, it's
falling apart.
Whether it's cookies, whetherit's pizza crust, whether it's
bread, it's really crumbly.
So gluten is a protein that issticky and you can actually buy
(03:24):
it in the grocery store.
It's pretty funny.
Oh, I didn't know that.
When you walk down they have an entire bag.
It's like vital wheat glutenand I'm like, wow, it's a whole
bag of exactly what will kill me.
So it's what helps make thingssticky.
But gluten is found in so manydifferent products.
So a lot of times you thinkcarbs, you think things like
that cookies, cakes but it'salso found in things that you
(03:45):
would never even think.
So there's wheat in soy sauceand a lot of different sauces or
soups that people make whenthey kind of create a roux with
flour.
You can't eat that.
Anything that is breaded, friedchicken, any types of gravy,
anything like that.
So it's really difficult.
It's hidden in a lot ofdifferent things that you think
it wouldn't be hidden in Chinesefoods, thai food, because they
(04:05):
use a lot of soy sauce andthings like that.
So you have to be reallyvigilant in knowing what you can
and can't eat and kind ofworking your way around it.
Nikita (04:12):
Do you find it difficult to avoid gluten?
Lina (04:16):
Not anymore.
So when I was first diagnosed,I was 14 years old and my
diagnosis actually came down onHalloween.
Nikita (04:22):
Oh my goodness, really
Lina (04:22):
I couldn't even eat anything.
So I didn't even gotrick-or-treating because I was
like I'm not even going to knowwhat I can and can't eat.
So for probably the first twoyears or so my parents were
really good at making thingsthat I was comfortable eating
and that I liked, but we didn'tventure too far because we
didn't really know what we couldor couldn't do and at that time
you couldn't just go to thegrocery store and buy
gluten-free pasta or gluten-freebread, because it wasn't a
(04:44):
thing.
We went to restaurants and wewould ask to speak to the chef
and the chef would come out andsay I can't have gluten.
And he'd go, oh, there's nosugar in here.
And I'm like, well, that'sglucose, and now I'm going to
die.
I'm definitely not going to eathere.
(05:09):
Because if you're the chef youdon't know the difference I am
not going to eat here andknowing what to look for and
knowing what hidden gluten lookslike, and you know hydrolyzed
wheat, protein and the differenttypes of words that you're
looking for differentanti-caking agents so, believe
it or not, some of the differentlike paprika, onion powder,
garlic powder they put differentcaking agents to make sure that
they don't ball up those spices.
Some of those can have glutenin them.
So now that I know what I'mlooking for, and I've been
dealing with this for more thanhalf of my life.
At this point I'm just so usedto it, so it's second nature to
me.
But to somebody who's justrecently diagnosed, I can see
(05:29):
how it could be really scary andreally overwhelming to try to
figure out what you can and whatyou can't eat?
Nikita (05:33):
Yeah, absolutely so.
Why don't you tell us before weget into you getting diagnosed,
why don't you tell us what someof your symptoms were that made
your parents and you, for thatmatter, even ventured down the
road of going to the doctor andtrying to figure out what was,
quote, wrong with you?
Lina (05:51):
Yeah, so I had a slew of symptoms, and celiac disease is
one of those interesting thingswhere it could present itself in
a number of different ways.
So some of the things that Iwas struggling with was really
bad migraines.
Nikita (06:02):
Okay.
Lina (06:03):
I would get these migraines to the point that I
would have to go to sleep.
They were so painful and Iwould just kind of black out for
a couple hours and I wouldn'teven remember what happened
because the pain was so intense.
I would also have really badgastrointestinal issues.
So between having diarrhea,having gas, vomiting after I'd
eat, the cramps were so intense.
The only way that I could bestdescribe them is what
contractions are like whenyou're having a baby
(06:25):
oh, wow, okay.
So like literally the muscles in your stomach start to
tense up and you can't move.
It even hurts to breathe,
oh, wow.
So most of the time I'd be laying on the floor or laying
on my bed in the fetal positionon my left hand side I would a
lways get sick after lunch,because what does every kid eat
(06:45):
for lunch at school?
Nikita (06:45):
Sandwiches,
sandwiches, every day Right.
Yeah, so every day, you know,within half an hour after lunch,
I'd be at the nurse's officeand the nurse is always asking
me what class do you have afterlunch that you don't want to go
to?
Why are you always in my office?
Right,
Lina (06:59):
Because I'm sick.
You know the same thing.
After dinner, my brother and Iwould always have to switch off
different chores.
So, whether it was cleaning thetable or doing the dishes or
taking the garbage out, I'dalways be in the bathroom when
I'd be sick and my father wouldbe like.
You know, Lina, it's not fairto your brother that you're
always in the bathroom beingsick while he has to do all the
chores and I'm like, but I'mactually sick.
(07:20):
So my mom was really the onlyperson that believed me and she
said I know my kid Um, and shestarted taking me to different
doctors to try to diagnose me.
Nikita (07:26):
And at this point, this is when you were 14?
No, this was when I was eight.
Okay, so this started way back when you were young,
Lina (07:31):
yeah, so all the pain and different issues started when I
was eight.
Um, and at the time I remembermy mom saying to me you need to
tell me what hurts worse Is ityour head or is it your stomach?
Because we can't focus on both,because we've been going to all
sorts of different doctors andspecialists up and down the East
coast trying to figure out whatwas going on.
Um, so at that point I told mymom.
I said you know, the headachesare probably the worst part,
(07:52):
because I kind of black out andI'm not even present.
I don't even have anyrecollection of what's going on.
The stomach pain is awful, butat least I'm conscious.
So my mom started taking me todifferent neurologists and they
basically diagnosed me withchronic daily migraines.
So they put me on apreventative medication that I
would take every day to try tokeep the migraines at bay and
then when a migraine would comeon, I would take this other type
(08:13):
of pill that would try to stopit in its tracks.
So I was kind of really dopedup on this medication.
It was pretty high dose stufffor adults when I was eight
years old and it really did helpwith my migraine.
So it really kind of stoppedthat piece of it.
But then my stomach was justgetting worse and worse and
worse.
Nikita (08:28):
Oh, my goodness, that just sounds absolutely terrible
and I don't know, um that Iwould want to deal with that.
So kudos to you and your momfor being able to manage that.
Um, now, after experiencing allthese symptoms, did you or your
mom maybe not so much your dad,but was celiac even on the
(08:50):
radar?
Or were they just thinking youknow you were playing or you
know making it up, or anythinglike that?
Lina (08:56):
So a lot of these different doctors were thinking
different things.
So some doctors thought that Iwas lactose intolerant, so we
had, you know, tests and allsorts of stuff for that.
.
But, being with the type ofcuisine that I grew up with, I
was eating a lot of things thathad sour cream and cheese and
things of that nature and thatnever seemed to bother me.
So they did test me for lactoseintolerance.
That wasn't it.
I did have some people tryingto tell my mom that I had an
(09:18):
eating disorder and then I wasmaking myself grow up and I was
making myself sick and my momwas saying no, I know my kid.
I know my daughter.
She likes to eat, she enjoysfood, and she's not doing that.
That's not what it is, andthere were some people who were
just kind of saying it's abehavioral thing, we can't help
her,
okay.
So it wasn't until years later when I finally went to a
gastroenterologist and I startedgetting tested for all sorts of
different stuff, but celiacdisease was never at the top of
(09:39):
the list.
Nobody actually knew whatceliac disease was back then,
because this was back in theearly 2000s where it really
wasn't that prevalent and itreally wasn't on anybody's radar
.
So I hadn't even heard of theterm celiac disease until my
freshman year of high school.
And you were about how old atthis point?
I was about 13 years old,
okay.
So back then it was totally socially acceptable for
(10:01):
kids to bring in cupcakes andcakes and different things to
celebrate your birthday, whereasnow everything needs to be, you
know, nut free, allergen free,this free, so you?
My kids aren't even allowed tobring in food.
Yeah, who can't even go intothe school anymore?
So back in my freshman year ofhigh school somebody had come
into my English class withcupcakes for their birthday and
was passing out the cupcakes andI remember my English teacher
(10:21):
declining a cupcake and I'm likehow could you say no, it's a
cupcake.
And she's like, oh, I can't eatit.
You know.
She's like I have somethingcalled celiac disease and I said
, well, what's that?
And so she kind of explained itin layman's terms a little bit
and basically said you know, Ican't have flour or wheat, and
you know I'm basically allergicto it, which isn't you know the
right nomenclature, but inlayman's terms I can understand
this, this
Right to dumb it down, so tospeak, for a 13, 14-year-old.
(10:45):
Right and I remember saying to her oh my God, I would
never be able to do that.
If I did that, I would just eatit anyway, because I wouldn't
know how to live without it.
Not knowing that this isactually what I was within a
year of being diagnosed with andstruggling with.
Nikita (11:00):
Oh my gosh, that's just crazy.
So you went to agastroenterologist.
I can't even say the word Agastroenterologist,
gastroenterologist
Yep, that one too.
Lina (11:08):
Yep, I did so.
We had been going tospecialists all up and down the
East Coast, as I was mentioning,and it was actually a GI in my
hometown where I grew up whodiagnosed me.
Okay, and how did they go aboutdiagnosing you?
So it was a bunch of different tests that I ended up
having Back then again, becausethis was so fresh and this was
so new, they didn't do a bloodtest first to see if you had
(11:30):
genetic markers, which would bethe first step nowadays, and so
back then, they actually sent meas a 14 year old girl For I
didn't ask me I had to enterOscar bees and I had a
colonoscopy.
Nikita (11:41):
Oh my god.
So these were all reallyinvasive procedures where I had
to drink laxatives, I had to getcleaned out before I went to
the hospital for theseprocedures to get tested.
They would take biopsies of mytissues in my bowels and my
small intestines and they wouldbasically test to see what was
going on.
They were looking for parasites, they were doing blood work,
they were doing all sorts ofthings.
So when the very first testcame back, my numbers for celiac
(12:07):
disease were so high off thecharts that they said this can't
be.
We need to repeat the testbecause the numbers are skewed.
So I said, okay, do I need toprepare?
Do I need to fast?
Do I need to do anything?
No, no, no, just come back,keep eating whatever you're
eating and come back.
back.
So it took them testing me fourseparate times with four
separate biopsies to come back,and it was Halloween when I was
(12:29):
14 years old.
I was a sophomore in highschool.
They came back and said yep,you have celiac disease.
And I remember thinking whatexactly is that?
I had heard the term because ofmy English teacher a year prior
, but I didn't really know whatit was, and my GI was learning
with me because I was the veryfirst person that he diagnosed.
Oh, my goodness, that's crazy.
So now you get diagnosed withthis celiac that we don't know
(12:52):
what is essentially.
How does your life change atthat point?
Lina (12:58):
So obviously dietary, it changed huge.
I didn't know what I could orcouldn't eat.
So potatoes everybody who knowsme, potatoes are my favorite
food in the whole wide world Iknew I could eat potatoes so
that made me super happy.
I also knew that I could eatmeat and fish so long as they
weren't prepared with any sortof breading or breadcrumbs or
anything like that.
So for probably about the firsttwo years I was eating meat,
(13:20):
fish and potatoes and vegetables.
But aside from that, socially itchanged because whenever you go
to school and it would be, youknow, a Friday hey, we're having
a pizza party or hey, it'ssomebody's birthday, here's cake
.
So I was always kind of left outof those things.
And what ended up happening ispeople started to feel bad, and
it still happens to this daywhere someone said, well, I
don't want to eat that in frontof you and make you feel bad.
Now it's like please, I've hadthis for so long, it doesn't
(13:40):
even phase me, I'm not evenmissing it at all, you know.
But back in high school it wasa really weird feeling.
And I remember the very firstfield trip that we went on my
sophomore year, um, and we wentto the courthouse and we I was a
criminal justice student, oneof the criminal justice classes
so we went to go watchsentencing and afterwards we all
went to mcdonald's and Iremember thinking like, oh, it's
(14:01):
okay, you know, I'll just get aburger without the bun or
something.
And I remember each kid goingup and ordering and I waited
till the end and I was with myteacher who was going to pay for
everything.
So at the very end I went upand I said you know, I'd like to
have a cheeseburger without abun.
And I remember looking at me gowhat?
And I'm like cheeseburger w Iw I wheeseburger heeseburger ca
, but I just don't want thebread.
I'm like, well, why don't youwant the bread?
And I'm like, well, because Ican't eat the bread.
(14:21):
And they're like, well, can'tyou just take it off?
And I'm like, no, I can't takeit off.
And they're like well, we don'thave a button on our screen to
say no bun.
I'm like, okay, well, the otherstudents are there and
(14:43):
everybody's looking andeverybody's wondering like,
what's going on and why are youmaking a big deal?
and I started to feel reallyuncomfortable at that point
because now all the attention'son me and I don't want everybody
to know what's going.
What's going on?
And then people start askingall the questions well, what
happens if you eat it?
Are you going to die, you know?
And it just becomes this thingthat you don't want focused in
on you, sureAnd I remember my teacher just
going up to the person with mythumbs and going, can you just
hand her the hamburger in herhand?
Like what do you need to do tomake this happen and not make
this kid feel bad?
(15:03):
Right, and I just remember atthat point being like I don't
even want to eat.
So those were kind of like thebiggest hurdles to get through.
And then answering thosequestions whenever you were in a
social situation where youcouldn't eat anything.
And then everybody feels thatI'm so sorry, I no, I didn't
make you anything.
Well, I can get you something.
Do you want me to get yousomething?
(15:23):
And then you feel bad becauseyou feel like you're putting
them out.
And then it just kind of becamethis thing where I always eat
before I go anywhere, so that'skind of my thing.
And then people are like, well,why aren't you eating?
Why aren't you eating?
And then it becomes you know,are you dieting?
Nikita (15:45):
Not even gluten intolerance.
It's essentially an allergy,correct.
Lina (15:49):
So the difference between an allergy and an intolerance is
that an allergy can becounteracted.
So think about somebody who hasa peanut allergy and they have
an EpiPen.
So their epinephrine basicallyundoes the damage done by the
allergen.
So you kind of get a shot inthe leg or you get the shot in
the nose.
Now they have the nasal sprayand somebody is better, Somebody
(16:11):
who has an intolerance.
There's nothing that cancounteract it.
So there's no pill that I cantake.
There's no epinephrine that'sgoing to make it better.
Basically, it needs to run itscourse.
Nikita (16:17):
So you have an intolerance, not an allergy.
Lina (16:19):
Correct Okay.
So a lot of times I'll justtell people know I can't have
flour or wheat because I'mallergic to it.
But, people who actuallyunderstand it know it's a gluten
intolerance.
Nikita (16:28):
Right, okay Now, with you said, you've been dealing
with this, obviously sinceyou're 14 years old, how
difficult is it for you to goout to dinner with friends and
find something to eat?
Lina (16:40):
Yeah, so now I pretty much figured it out.
I mean, anywhere I can go, Icould really even get a salad,
if that's really all I can do.
But the most frustrating partis places that just aren't
educated about it.
And when you ask them, you knowdo you have a gluten-free menu?
Or is there somebody who couldtalk to you about gluten-free
options?
Like, well, you can have salad.
I'm like, okay, but you alsohave grilled chicken, so I can
have that too.
And you also have steak, so Ican have that too.
And like, hmm, are steaks notgluten-free?
(17:00):
And I'm like, really, do youflour your steak?
Like what do you do?
I'm not asking about sauces orgravies, I'm just talking about
the meat itself.
Right, so just the people whoare not educated about it.
You know, and I feel like youshould know, so that part can
get a little frustrating, but Ican always find something that I
can eat.
Now you see a lot of you knowthe major chain restaurants have
(17:25):
gluten-free menus or you'll seethey'll have like a little GS
for gluten sensitive.
Most places won't call itgluten-free because you don't
want to say anything is free ofgluten with cross-contamination.
So there's a certain standardthat you have to have making
sure there's a certain parts permillion of gluten that are not
in the food in order to beconsidered gluten-free.
So a lot of places won't makethe claim that it's gluten-free
but they'll say these are madewithout gluten-containing
(17:47):
ingredients or this is safe forsomebody who is sensitive to
gluten.
Nikita (17:53):
For someone who has celiacs like yourself.
If you eat something that isgluten-sensitive, are you okay
with that or will you steerclear of something like that?
Lina (18:05):
Yeah.
So it's really a judgment call.
There are some things that areno-go.
So you're not supposed to eatanything that's prepared in a
shared fryer.
So let's say you go to a fastfood place and they fry French
fries which would normally begluten-free, with chicken
nuggets which are breaded right.
So you're not supposed to eatthat because it's in the same
type of oil.
But let's say they use an ovenwhere they're baking things that
(18:28):
have gluten versus bakingthings that don't have gluten.
You know.
So you really are supposed tosteer clear of any of these
things, but you need to live.
So you know I kind of take mychances.
Every three years I have to goback to the GI and I have to
have these tests to see how myinsides are looking, because,
basically, repeated exposure togluten can do different things
to your insides.
(18:48):
So even if you're not feelingit or you don't know about it,
you know you can have ulcers,you can have inflammation in the
lining of your stomach, itcould lead to diabetes, it could
lead to esophageal cancer.
So it can do all sorts ofissues and damage to your
insides.
And because I've had it so long, they don't know what the
long-term effects of celiacdisease are because people have
really just been gettingdiagnosed within the last 10, 15
(19:08):
years and I've had this over 20years now.
So they're doing differentsorts of tests on me to
understand what are the types ofthings other people may have to
deal with in the future whenyou've had prolonged exposure to
gluten.
For two plus decades.
Nikita (19:20):
That's crazy.
So now that you've beendiagnosed with the celiacs for
so long, do you have a go-tolet's say, pizza that you enjoy,
or a go-to restaurant that youenjoy that you don't have to
think twice about?
Lina (19:37):
Yeah, so there's a lot of different places that have full
on gluten-free menus.
There's actually a place aboutfive minutes from where I work
and it's an entire gluten-freerestaurant.
Nikita (19:47):
Oh nice.
Lina (19:47):
Anything I want on the menu I can eat, which is amazing
.
And you don't have to worryabout it, don't think about it.
I don't have to worry about anything.
They bring bread to the table.
It's gluten-free bread, youthat has a sauce gluten-free,
all the pastas gluten-free, allthe desserts are gluten-free.
It's almost like me going toDisney World.
Nikita (20:02):
Nice
Lina (20:03):
I can have anything I want , which is incredible.
So those are really my favorite.
And then a lot of the chainrestaurants.
They now have gluten-freeoptions, so they'll have
gluten-free buns for sandwiches,things like that, or you know,
they'll list that something canbe modified to be made to be
gluten-free.
So that's amazing.
I figured out all my differentfavorite brands of pasta, my
favorite brands of bread, myfavorite muffins.
(20:23):
Oh my gosh, shout out to TraderJoe's.
They have the best gluten-freemuffins in the world.
There's cinnamon coffee cakemuffins and I don't eat coffee.
I don't like coffee.
There's actually no coffee inthem.
You can't eat coffee,
yeah Well.
I mean anything coffee flavored,right, so like a tiramisu type
thing, or um you know, coffeeflavored ice cream, or even like
espresso martinis.
I don't like the flavor ofcoffee.
Oh, it totally grosses me out.
(20:45):
Um, but I've read theingredients and there's no
coffee in it.
I think they just call itcoffee.
Yeah, like a coffee yeah oh,it's my jam best things ever um
what about pizza.
so pizza, shout out to domino's, the first major chain
that has gluten-free pizza,which is amazing.
The pizza is actually reallygood too.
They do have a disclaimer thatsays you should not eat it if
you have celiac disease becauseit's prepared in a common
(21:06):
environment with other things.
But it's the same thing if yougo to your local pizzeria and
they have gluten-free pizza,they're making regular pizza too
.
So you really do need to useyour best judgment and see how
it affects you, becausesometimes you have people like
my brother.
My brother has cell life diseaseas well, but he's asymptomatic,
so he doesn't feel any of thesymptoms, but he has the same
internal damage that happens tohim.
So, depending on yoursensitivity level, you may not
(21:27):
know that you're being glutenedwhen you are.
I'm actually very sensitive toit.
So if I were to get Domino'sand somehow there were some bad
cross-contamination within 20minutes of me eating, I would
know for sure I've been glutened.
But knock on wood, I have notgotten sick of eating Domino's
pizza.
I will order it when the hungerstrikes at 1230 at night and I
will eat some gluten-freebuffalo chicken pizza in my bed,
(21:49):
and nothing makes me happier.
Yeah, pretty amazing.
Nikita (21:55):
What are some pet peeves of yours regarding celiacs and
the way people you know justinteract with you or interact
with people in general who haveceliacs?
Lina (22:07):
so my absolute biggest pet peeve is when somebody finds
out what I have and I tell themand they're like, wow, so you
can't eat cake, you can't eatpasta, you can't eat bread, you
can't have desserts, and they'relike, wow, I wish I had that
because I'd be thinner.
Oh, that's just insensitive.
It's I think it even is a step above insensitive and it's
just ignorant, you know, becausethis is an autoimmune disease,
(22:28):
right?
So it's like having diabetes.
Do you also wish you haddiabetes so you couldn't have
sugar?
Why don't you just wish you hadsome like willpower and some
self-control so you can justwatch what you're eating if you
want to be healthier?
Or why don't you startexercising if you think that's
what you're eating if you wantto be healthier, or why don't
you start exercising if youthink that's what you need?
But to say that you wish youhad something that you know I'm
going through that causes awhole host of other issues.
And it's related to a lot ofthings.
Nikita (22:46):
They don't know how miserable you feel when you do
get gluten.
Lina (22:50):
Right and the effects that it's had and the surgeries that
I've had because you know it'seaten at the lining of my
stomach, because I ended uphaving a hiatal hernia that
needed to be repaired, anddifferent things that have
happened over the years becauseof celiac disease.
So yes, it's very insensitivebut it's also pretty ignorant to
say something.
So that's like my biggest petpeeve.
My other one is when peoplethink they are gluten-free but
(23:11):
they're really just doing itbecause they think that it's
gonna be healthier.
And you have to think gluten,like I was explaining earlier,
is the sticky part that holdsthings together.
So when you don't have that andyou're trying to make a
gluten-free pretzel or agluten-free bread or a
gluten-free cookie, you'reputting a lot more crap in there
to get it to stick together.
So it's not essentiallyhealthier when you're doing a
gluten-free replacement ofsomething that naturally has
(23:34):
gluten in it.
It's never healthier Eatinggluten-free and just eating
healthier in general.
So things that are naturallygluten free, sure that's healthy
, because you're eating meat,you're eating fish, you're
eating vegetables, you're eatingeverything kind of plain and
raw like a regular raw diet.
That's one thing.
But when people are going outand buying gluten free bread and
saying I'm doing this becauseit's healthier.
That's not healthier andthey're just not educated about
(23:54):
it.
And people like that make itharder for people like me who
actually have celiac disease,because you know they'll take
bread off of something andthey'll eat the inside.
When I can't do that, and whenI tell somebody, you know, if a
server brings something to thetable and I said I'm so sorry
that I asked for it without thebread because I can't eat it,
for them to just kind of take itoff in the back and bring it
back to me and I don't know nowbecause they saw somebody else
(24:15):
do that and it was okay for them, but they didn't actually have
celiac disease like I do.
So those are kind of my twobiggest issues People who are
making it seem like it's a faddiet or it's really not that big
of a deal.
And then the people saying, well, I wish I had that, because I
wish I was thinner, I wish I washealthier, I wish whatever it
might be.
Nikita (24:29):
Right.
Do you have any otherrecommendations or ways to go
about bringing it up to their topeople's doctors if they think
they might have, whether it beceliac or just another kind of
GI issue?
Yeah, how would you go aboutbringing that up to your doctor?
Lina (24:50):
Absolutely so with celiac disease in particular, it's
genetic, so it's, you know,somewhere in the family line.
The only thing that's reallydifficult is because it's now
just starting to really becomepopular is you might not know if
your grandparents had it beforethey passed, because they had
never been tested for it.
So if you are interested ingetting tested for celiac
disease, the number one mostimportant thing is to not stop
eating gluten,
(25:11):
really?
Yes, because it takes seven days for gluten to be
entirely out of your system.
So if you stop eating glutenfor a month and you're like, wow
, I feel great, I should gettested and see if this is what
it is, and you have no gluten inyour system and you get tested,
there's no gluten for your bodyto detect.
There's no issues going on inyour body because for those
seven days that it's been out,your body's been healing itself.
So there's no way to detect youhave a problem.
(25:31):
So if you really do think youhave a problem with gluten and
you want to get a blood test, sothere's two different genetic
markers that you would gettested for.
So if you have the possibilityof having celiac disease, you
would have to have at least oneor both of those markers.
If you don't have either ofthem, it doesn't even make sense
(25:53):
to go further and have a biopsydone, because you can't
possibly have it without havingone of those two markers.
Now it's totally possible thatyour blood work comes back and
you have one or both of thosemarkers.
Your celiac disease may not beactive.
So basically, my daughter shewas having some stomach issues
so we had her tested.
She has both of the markers forceliac disease.
She had the biopsy done and herceliac disease is not active.
(26:14):
So it could be at some point inyour life where you have some
major life changes.
You could go through stress, youcould go through puberty, you
could go through stress, youcould go through puberty, you
could go through menopause, youcould have a baby.
It could be something majorthat happens to your body that
activates the celiac disease.
Okay, so you can have both ofthose markers and live your
entire life and it never becomeactivated or it could become
active at some point.
So luckily, my daughter she's16 now.
(26:35):
She doesn't have any symptoms,her celiac disease isn't active,
she has those two markers.
So it may happen one day forher.
Sure,
I pray to God it doesn't
Absolutely,
but that's the first step.
So I would just say you know,don't stop doing what you're
doing, go get your blood workdone.
If you have those markers, kindof take it from there.
Nikita (26:50):
Yeah, that's crazy.
Now, if it's okay with you, Iwant to invite our viewers on
YouTube and our listeners, ifthey have questions, that they
can definitely reach out,whether it's via email, at to
the number two voices one, thenumber one, vibe, at gmailcom.
You can also find us onInstagram and on TikTok ,
(27:13):
excuse me, at two voices, onevibe.
Again, that's the number twoand the number one, and Lena can
get back to you with anyquestions and if she doesn't
have the answer, you know we candirect you to your doctor,
because neither one of us aredoctors.
Granted, you've dealt with thisyour almost entire life at this
point, but we're not givingmedical advice?
Yeah, we're not giving medicaladvice.
(27:35):
You know we're just sharingLena's story because she's been
through so much, you know, andwe've been friends now eight,
nine years and it's an ongoingjoke between us.
But we have that relationshipwhere you know I can turn around
and say to her don't eat this,you're going to die.
Yeah, you know, but I don't dothat to just anybody.
So if you're having theseissues, definitely reach out to
(28:02):
your doctor, get yourself tested.
If you have questions, again,you can email us.
Catch us on TikTok or onInstagram.
Lina, do you have anything elseyou might want to say or
suggest or anything else ingeneral regarding celiacs and
being gluten-free and whetherit's whatever you might have?
Lina (28:19):
Yeah, so, just as an aside , I know I shared some of the
symptoms that I have, butceliacs can present itself in a
wave of symptoms.
So I've met people who getseizures from having celiacs.
I've met people who get skinissues.
They develop psoriasis.
So even if you know you'reexperiencing something very
different than the way that Iexplained it, it still may be
celiac presenting in a differentway.
Um, so, you know, don't thinkthat just what I went through in
(28:42):
my story and how I experiencedit is, you know, comprehensive
of the ways that celiac canpresent itself.
So there, are different ways.
And then if anybody is newlydiagnosed or they're looking to
be, you know gluten-free orsomebody in their family is and
they want to make something, Ihave really great ideas for
recipes my favorite brands ofpasta, my favorite desserts,
some of my favorite restaurantsso happy to share any of that
(29:05):
information.
If anybody wants to send anemail, as Nikita had mentioned,
the number two voices, thenumber one vibe at gmailcom Be
happy to share all myrecommendations and just want
everybody to stay healthy andstay safe and make sure that if
there's anything going on andyou know it's not you be your
biggest advocate and be yourbiggest cheerleader.
Because if it weren't for mymom pushing the doctors and
pushing my dad and pushing theschool nurses and pushing
(29:25):
everybody who said you know, no,your daughter's fine, there's
nothing wrong with her who knowshow long it would have taken
until I was diagnosed and whoknows how much worse things
would have been by the time thatthey caught it?
Yeah, absolutely so make sureyou're listening to your kids.
Make sure you're listening toyourself.
Nobody knows your body betterthan you do.
Nikita (29:38):
That's the truth and you know I say that all the time.
Yeah Well, thank you forsharing your story with us.
Thank you, guys for listening
and again, if you have any questions, you can email us
at two voices one vibe atgmailcom, and you can catch us
on Instagram and on Tik TOK atat two voices, one vibe until
next time.
This has been Lina and Nikitaon two voices, one vibe.
(30:01):
See you next time.
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