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The craziest things happen when you're gluten-free.

You know, especially out traveling or out at a restaurant.

I've had multiple encounters

where I can't be included in something

just because of the way that I have to eat.

The one thing everyone says is, "Oh my gosh",

"if I had to go gluten-free, I would die."

"Oh my gosh, I could never do that."

“I would rather die than never eat gluten again.”

That's what you think my life is like.

Like, just why keep living, just let it go, you know?

“How are you not dead yet?”

Because I'm eating gluten-free now.

That's how I'm not dead.

I have a disease and I'm fixing it, by being on this diet.

A lot of times people say like,

"Well, you have a make-believe disease."

There's a little bit of a roll of the eyes.

Yeah, it's definitely the eye roll.

“It's just a hoax.

What it really is,

it's about cockroaches being ground up in your food.”

And I was sitting there going like,

"What are you talking about?"

"What does that mean?

You can't eat Chick-fil-A?"

"Oh, you can have just a little bit, right?"

They offered me a potato, like a raw potato.

"Oh well, this is vegan."

"So you can't drink beer?"

"Can you have dairy?"

"Oh, they're just gonna have a tummy ache."

No, do you want me to projectile vomit right there?

Because I will.

Then that'll be the joke.

That's the joke.

My older brother always made the same joke, you know?

"Oh, I'd like extra gluten on my table"

and it's just like, you just kinda get sick of it

because it wasn't funny then.

It's not funny now.

"Oh, is that why you're so skinny?"

That one really irks me

'cause I couldn't gain weight for the longest time

because of my celiac disease.

I'm not trying to lose weight, I'm trying to stay alive.

You know?

Having celiac disease is a way of life, people.

It is not a diet.

I know that because on a diet you can have a cheat day.

But if I have a cheat day, it turns into a regret month.

I've been having a lot of stomach pain, bloating, fatigue.

Oh, do you have a lot of stress?

Well, who doesn't?

Are you taking medication?

Just the over-the-counter stuff,

but it's not really working.

Sleep?

Well.

Exercise?

I just get so sick, I feel like I can't.

You need to do better with sleep and exercise.

I just told you that I can't.

Okay, well, see you in six months.

The pain is so bad I can't sleep.

I'm nauseous all of the time.

I can't focus at work anymore.

Yes, yes.

Stomach pain, exhaustion,

a little brain fog.

Finally.

Someone's listening.

Your spleen chakra, it's screaming.

My what?

It's all misaligned due to this negative energy.

Negative energy?

We must cleanse you with a little bit

of moon water, mugwort, and garlic.

I just wanna eat a sandwich without crying.

See?

Negative energy.

Sandwiches are spiritually aggressive.

What's this?

300 bucks.

Please, for years I've had stomach pain, bloating,

fatigue, brain fog.

Now I'm dizzy all the time. I'm scared to eat.

I'm constantly running to the bathroom.

Oh, well it sounds like you have a gluten intolerance,

possibly celiac disease.

Let's order some tests.

Wait, what does that mean?

It just means you'll have to go gluten-free.

What's gluten?

Gluten is a protein found in wheat,

rye, and barley and sometimes, oats.

Hello?

It acts as a binder helping food

maintain its shape.

What?

What has gluten in it?

Bread, pasta, pizza, cakes, cookies, crackers,

cereals, beer, soy sauce, gravy, salad dressing, soups,

processed meats, candy and don't forget to check medications

and of course, lip balm.

Lip balm?

Don't forget about cross-contamination.

What's that?

It took me a long time, I would say

to get diagnosed. About two years from symptom onset

to diagnosis.

I've been diagnosed with celiac disease

and dermatitis herpetiformis in 2007.

It took me three and a half years

to get diagnosed, which is sad.

From the moment I exited the birth canal

until 10 years old.

All that time, no answers for anything

that was going on with me.

So it took a long time.

I started having symptoms at five years old

and I was able to find out when I was 14 years old.

I started having really bad stomach symptoms

at only two months and like

by the time I was three, I was just having like tantrums

every day and I always said that my stomach hurt.

From the time that I first talked to my doctor

about what was going on to getting diagnosed

was like three months.

But I was probably experiencing symptoms

a lot longer than that and just didn't get it checked out

because guys just don't go to the doctor that often I guess.

So.

My symptoms started kind of unexpectedly

and after about a week or so, I went to a doctor in New York

and he kind of just wrote it off as like,

"You probably just have acid reflux.

Take this medicine and if we need

to do an endoscopy, we will."

And he just kind of sent me on my way with this prescription

that didn't really do anything for me.

I was getting very sick all the time

and it was migraines five, six days a week at this point.

Like I had to stay in dark rooms a lot of the time

and take a lot of medication to keep them

so I could be out in the daylight.

And so I just worked only at nighttime and stuff like that.

Just really it changed my life a lot.

It forced me into situations that were not really normal.

It took me about,

I like to say, now thinking back, about 4 years

to get fully diagnosed from when I had my first real symptom

of going to the hospital thinking I had a heart attack,

but it was just indigestion to actually getting diagnosed

because I was getting so sick off of everything I ate.

I have memories of when I was two

or three years old hiding behind furniture

'cause I had to go to the bathroom,

but I couldn't.

Really, just, my life was plagued

by chronic GI symptoms

and it wasn't something that we ever knew to look for.

It was just, "You're stressed,"

or, "You're not eating right,"

or, "You're not sleeping enough,"

or some kind of variable

that was in my control when in reality, the things

that I was doing wasn't different than anyone else.

So why was I having problems?

I have been unofficially diagnosed

as of about 11 years ago.

Basically, someone told me that I needed

to stay away from gluten

and all the symptoms aligned with celiac disease.

I've been symptomatic for over nine years

and it's not a good feeling.

It took me about a year and a half to get diagnosed.

I was a senior in college and I was getting really sick.

It got to the point where I could barely drink water.

I was in college, I was working a part-time job.

I was dancing and traveling

and performing in shows all over the country

and I had no energy.

I forgot what my life used to be like

before I was chronically ill.

I swear, like every other week,

like I'm going through something.

It almost ruined my whole life.

I wouldn't be in this chair right now.

I wasn't walking.

Gastrointestinal upside out the wazoo.

Both ways.

Constipation, diarrhea, all the things.

I could never go to the bathroom.

My mom would be like, "Drink more water."

But mom, I am.

It felt like there was like an animal doing this

inside my stomach like anytime I ate anything.

Just felt like someone was sticking a sword

through my gut, like almost every single day, just constant.

There's more than just, you know, doodoo stories.

It's anemia, it's skin conditions.

At some point during my medical journey

and the process of diagnosing me, they even thought

that I had MS.

I had migraines so often in high school, they thought

I had brain cancer.

I started with crippling back pain, brain fog, migraines,

that just wouldn't go away.

I had strep throat so many times.

Got my tonsils out, was still getting strep throat.

And even when I didn't have strep throat,

the doctor would be like, "Your glands are so swollen."

It has manifestations in different parts of the body.

There's dermatitis herpetiformis

which is the skin manifestation.

It used to be called suicide rash

because of how intense the itching was.

I was having rashes everywhere, like all over my arms.

I have been throwing up 30 days straight.

I'd always had some sort of stomach issues,

but honestly I just thought that was normal.

I just thought that was how people felt.

Now looking back we're like, "Oh",

that wasn't normal.

"Got it."

And that's what I really wish people understood

that it's not just about the food, it's about everything.

It changes your life.

Cheers.

I brought the certified gluten-free beer.

Certified?

Fancy.

Did it come with its own paperwork?

Yeah, the beer showed me its medical records.

Very transparent.

Unlike that gluten removed nonsense.

Ah, been there.

Gluten removed is just gluten that went on vacation

and came back with souvenirs.

Exactly.

I want my beer like my jokes,

clearly labeled and safe for everyone.

People have no sympathy

for you when you tell them that you're a celiac.

They're like, "I could never give up bread."

I'm like, "Really?

Well I can never give up

having a functioning colon, Brenda."

I was diagnosed in 1999

after being sick for about 10 years

and nobody could figure out what was wrong with me.

I had gone to doctors up and down the east coast.

Then I finally started seeing doctors, all different types

of specialists, from neurologists, gastroenterologists,

all the ologists.

Every ologist that existed, I saw.

Multiple of them too.

A lot of them were telling me I had anxiety.

You know, I had been to all these elite places

and I've been poked and prodded

and tested in every imaginable way.

No one wants to hear about.

They thought I had diabetes

based on some of my symptoms.

That didn't come back.

I got tested for like every autoimmune disease

under the sun.

Nothing came back.

Finally, you know, after a few years of suffering

and spending my summers in the doctor's office

instead of at the beach with my friends, I decided

to do some research.

I came across celiac disease

and I was like, "Hmm, a lot of my symptoms sound like this."

He said, "Well, I sent everything off

but you have celiac disease."

And I was like, "Okay, I don't know what that is,

but I'm glad you think that you know what's wrong with me."

And he said, "Yeah, you have no villi."

I was like, "Again, don't know what you're saying."

We did blood testing but my results were all fairly mild.

So he said, "Well, go gluten-free,

we'll retest your blood work in three months."

And I laughed.

I thought it was hilarious.

I'm like, "Oh, I wanna be a baker.

Like that'd be really funny if I couldn't eat gluten

for the rest of my life."

And that thought.

My dad was like, "Come see Dr. Merkel

from the Synagogue that we went to growing up."

So we had that family connection and within I think

a week and a half, we did blood tests, we did abdomen scans

with that really viscous fluid that you have to drink.

And then of course, we did the endoscopy to confirm.

Most people find their way to be gluten-free

by experimenting themselves.

A lot of people do their own research

and say, "You know, I don't feel good

and my doctors aren't helping me."

So I went to the doctor with my fat stack like this large

of all the different tests,

all the things I've been from all the doctors

being like, "This is what's wrong with me.

Nobody knows."

And I was like, "Can I be tested for celiac disease?"

And the doctor goes, "I'm not sure

if that's what you have, but sure."

And lo and behold, we do the bloods, we do the endoscopy

and I have celiac disease.

Celiac disease is massively underdiagnosed.

It is estimated that in the United States alone, 83%

of people living with celiac disease right now

are not diagnosed yet.

Isn't that insane?

I wanted to get diagnosed officially

just to say this is my official diagnosis.

However, you had to actively be eating gluten

and I knew enough

to say there is no way I can even eat a crumb of gluten

because it makes me so sick.

I'm not diagnosed as of yet.

But once my doctor decided, "I need for you"

to cut out anything gluten

"or wheat related," I started feeling better.

Ended up getting a series of tests done

and then got endoscopy colonoscopy done

and found out I had celiac disease, which, not fun.

And then after that obviously went gluten-free.

And about a month later is when I started actually feeling

a difference and realizing that I had been sick for years.

Did you ever notice how once you go gluten-free,

everybody suddenly becomes a food scientist?

Oh yeah.

Actually, sourdough is easier to digest.

Cool, Brad, I'm still not going to eat your brick of bread.

Yeah, my uncle Dave said,

"A little gluten won't hurt you."

I said, "A little raccoon won't hurt me either,

but I still ain't bringing one inside my tent."

Risk management, Uncle Dave.

Okay, here's the thing about me.

I'm an emotional person, y'all, that's right.

I like to eat my feelings, but I'm celiac.

I can't have bread, which is a shame

'cause bread is so much cheaper than therapy.

In my personal life, as a woman of color with celiac,

people look at me when I say, "I have celiac disease,"

and I kinda get a confused expression.

Being a person of color and it not being as common,

it almost feels like it's looked at as like a weakness.

You know?

"You can't eat these things?

This is our culture, this is what we eat."

No, I can't eat that.

And I said, "Well I believe I have celiac

but I'm not officially diagnosed but I have all the symptoms

and I check all those boxes."

"Oh, well, you're probably not.

Black people don't have celiac."

There's a clear logical disconnect

because of the stereotypes that persist in our society.

Kind of the same expression I get when people look at me,

they meet me for the first time

and they're kinda like, "Well, what are you?"

I think I had a really privileged experience in getting

my celiac diagnosis because from the time

of my symptoms starting to getting the official diagnosis

was a total of four weeks.

I think it's important for me to articulate

and reiterate the word privilege in that

because there's so many disadvantages

for people that don't look like me.

Black women specifically get medical gaslit beyond.

We need to work together.

We need to hold each other's hands.

We need to be there for one another

so that one day soon, we can break down

that stereotype and that myth of celiac as a white disease.

Because it's not and it never has been.

Right.

They don't see you as a person.

They see you as a color first.

And if you don't fit into that box that they've prescribed,

then well it doesn't make sense.

You can't.

Right.

And it's not just within the medical system

like as in terms of healthcare workers.

You see it in medical schools too.

I don't even remember having even a lecture

on gastrointestinal diseases

and the interface between psychiatry and GI disorders.

Unfortunately, even though celiac disease is well known

and relatively well common, more emphasis

is placed on irritable bowel syndrome

and inflammatory bowel disease such as Crohn's

and ulcerative colitis, peptic ulcer disease.

So we did learn a lot about autoimmune diseases

in medical school, learned about thyroid and celiac

but all separately.

I didn't know the correlation really,

until my daughter was diagnosed with celiac

and I started researching it.

We know today with the interaction between the brain

and the gut and a lot of people say

the gut is the second brain.

And I talk to medical students today as I teach.

And today, you know,

I think we're in a much better position

in medical student training.

The emphasis has been increasing, which is good news,

partly because patients asking for it

and partly because doctors are getting more awareness

that is more common than they think it is.

It's not the end of the world, don't get me wrong.

But like, there are just some days

and today is one of those days where I am just so,

you can tell, exhausted and burnt out.

After I got diagnosed, my doctor was like,

"You have celiac disease, you have to be gluten-free."

And handed me this one sheeter

that said gluten is found in wheat, barley and rye.

It's in things like cake, cookies, bread.

"You have to avoid gluten for your whole life.

I'll see you in about six months.

We're gonna do some repeat blood work

and make sure the diet is helping you feel better."

And I left.

It was a moment that everyone who has gone through that

has this, you know, relief of having the diagnosis.

Yay, I know what's wrong with me.

I'm not crazy.

But I also had what so many people have,

which is the doctor saying, "You have celiac disease",

don't eat gluten," and then nothing.

And I said, "What's gluten?"

He said, "Well, it's what's in bread"

"and pasta," which was my entire diet and that was it.

So to understand celiac,

just like any other autoimmune disease,

your body is fighting an invader.

After gluten is eaten, it travels into the small intestine.

The immune system mistakes even the tiniest amount

of gluten for a dangerous invader.

Problem is the immune system doesn't just attack the gluten,

it mistakenly attacks the lining of the small intestine too.

Normally, tiny finger-like structures called villi

help absorb nutrients from food.

But in celiac disease, those villi

become damaged and flattened.

That means the body struggles

to absorb important nutrients like iron,

calcium, and vitamins

even if the person is eating healthy foods.

This can lead to symptoms like bloating, stomach pain,

fatigue, brain fog, weight changes,

and over 300 other possible symptoms leading

to many other health problems.

I remember walking outta the office

and I was like, "Okay, now I can't have bread,

I can't have cookies, I can't have cake."

Okay.

I start doing some research online

and find out that gluten is in things like soy sauce.

And I was like, "What do you mean? Play-Doh?"

I'm like, “Huh?”

Like I didn't even think that gluten

would be in things like that.

At that point I was also feeling a lot of different

emotions around my diagnosis process.

I hadn't started grieving until maybe a year later

and I was like, "Oh, this is for the rest of my life."

I wish that somebody had told me

that celiac disease is forever

and you don't get any cheat days,

you don't get any days off.

Full stop.

So it was very hard and confusing

and frustrating as a little girl

because I couldn't do any of the things that I loved doing.

I couldn't eat any of the foods my family was eating.

We're in the cafeteria,

all the eighth graders we're all sitting together.

I would have my salad

and then everybody else would be eating their mac and cheese

and chicken nuggets.

Going into college too,

I dabbled a little bit with eating gluten

because again, you're so irresponsible.

I was just at this time where I was like,

drinking so much, partying so much,

“Why can't I have the drunk slice when we get home?”

“Oh, I don't feel sick from it.”

I look back at photos now.

I was so sick, I was so puffy.

I looked deranged.

I did not look like myself.

I looked like a different person.

I was diagnosed with celiac

and then I worked on a cruise ship two weeks after that.

I had no idea the nuance of what celiac disease was.

I didn't know what cross-contact was.

We would sit in the crew bar on the ship

and my teammates would order pizza,

I'd peel the cheese off and eat.

I had no idea because I didn't have the vocabulary,

I didn't have the full understanding

or grasp on how serious this thing was.

So whenever I get glutened, the main symptom

that I experience is the migraine.

Back of the shoulder up through the neck into my temple.

And then from there, it's the lethargy, it's the fatigue.

I get sometimes like a little bit of blurry vision

and my recall is really bad.

Like I have a hard time literally finishing my sentences.

There's a lot of GI things,

but I think the neurological stuff,

I think probably people just don't know about as much.

Right?

Because you can't see it.

It's not overt to anyone else except yourself.

I see that a lot with Peter, like his schoolwork tanks,

you know, and teachers are like, "Is he all right?

He seems really out of it."

I mean we did red shirt him and held him back one year

because of that significant ongoing issues and delays

because of celiac.

Yeah, no, at my corporate job,

I would not be productive the next day at all.

Like doing numbers was impossible.

My brain was just so fogged up like,

for the next few days honestly.

Like the brain fog, it's such a real thing.

And part of I think, I don't know if this is the same

for you, but like I would get so dizzy

because it felt like my head was a million pounds.

Like just leaning over and like getting back up.

Like after I get glutened, I get so congested in general

and so much like inflammation.

The thing for me

that was a real trigger was I had recurrent tonsillitis

six times in a six-month timeframe.

So I would get sick, be sick for two weeks,

be on antibiotics, get better for about a week and a half

and then it would come back.

If I do have a gluten attack or get glutened,

however anyone wants to term it, I have the same symptoms.

I am in the bathroom all day and I react very quickly.

So I don't know how everyone else does,

but I know within 20 to 30 minutes,

whether I've been glutened.

I'm gonna tell you it's hard having celiac,

it's like being in the mob.

One wrong bite and you're in the back

of an Italian restaurant pleading for your life.

He said that.

Ooh.

Ooh.

Nice, yeah, it looks really good.

Thank you.

It was just so good. - I know, thank you.

Gosh, thank you so much.

Of course, yeah.

I'm just over it.

No, thank you.

I can't eat poison.

Suit yourself.

Thank you.

Thank you.

Get in my belly.

Oh, so good.

Mm.

Oh my god.

This is the best I've had in years.

Are you sure you don't want any?

I'll take it.

This is so good.

Are you sure you don't want some, Alex?

How is everything?

This is delicious.

It's just like my grandma used to make.

It's to die for.

I'm in heaven.

Oh, are you sure you don't want some?

I can't. It'll make me sick.

Oh well, you know, we wouldn't want that.

I'll get you some more water.

Should we order another one?

Oh, I could totally eat more.

Yeah, I could totally destroy another bowl.

All right, that should fill you up.

So what would you say is the hardest part

about having celiac?

It makes me kind of mad

because everyone, it's easy for them to understand

like what a peanut is

and like what dairy is and people can't have that.

But they just don't know what gluten is.

And it's hard to be like,

it's hard to explain it to them.

Yeah, I hate that.

Me too.

I've definitely been like joked around it.

People definitely are like, "Why can't you have this"

"and haha, you can't have this" and stuff like that.

Yeah.

Not really bullying, more like teasing.

Like the thing I get most is like "I would die

if I couldn't have gluten."

Oh yeah, I've heard that before.

That's annoying.

It's not fun. - I don't like that.

Luckily, for other autoimmune diseases,

there is medicine for it, right?

Diabetes, you have insulin, thyroid,

you can be on thyroid hormone.

But unfortunately, for celiac,

as of now at least, there is no medicine for it

except for a gluten-free diet.

For something as intense as celiac disease,

I mean, it's covered under the ADA

because it's recognized as a disability

that impedes on every day functions of life.

You have to have a complete mindset shift.

The amount of mental load that is associated

with all the decisions that we constantly have to do.

I mean, we make millions of decisions every single day.

And you then have to think about everything

that goes in my body, everything that's near my mouth,

when am I going to eat?

Am I going to be hungry?

You always have to think about one extra thing

in everything you're doing, and every person

has to eat three times a day.

So when you have to actually think about that

instead of just doing it, it's very difficult.

I always have to be aware, like it's always in the back

of my mind because kinda isolates me from everyone else

a little bit.

I always think that the first two years of living

with celiac disease are like your trial period.

You know you're still trying to figure out like,

okay, what's malt?

What is that and why do I have to avoid that?

I remember like the first week of being diagnosed

with celiac, I love Twizzlers.

I was eating Twizzlers, okay?

And I was like, oh like let me practice reading a label

thinking, these are fine.

I look at the label, it says wheat.

Full breakdown.

I was like, I didn't know that.

I had no idea that Twizzlers contain gluten.

How would I have known that?

You know, practicing reading a label.

So by the time I finally felt comfortable

with this, it was about two years.

I did not have as quick of a turnaround as you.

I'd say it took me two years to stop

like giving in on weekends and just eating gluten

like on purpose.

But it took me until like last year,

like probably the five-year mark

to really cut down on the cross-contamination.

Because I think it was actually your video

that made me rethink it about the chicken.

The raw chicken?

The raw chicken.

The viral raw chicken video?

Yeah. Yeah.

So let's just think like, okay,

if I'm eating like a gluten filled sandwich

and I'm about to make something for my friend,

shouldn't I wash my hands between that to get off

any of the contamination like you would with raw chicken?

Or let's say I dipped raw chicken in a dip,

you're obviously not gonna eat that dip anymore.

That's what it's like with gluten.

So always think like okay, if I'm dipping something,

if I'm touching something that this person's allergic to,

shouldn't I clean everything?

And then that's how I know it's actually safe.

It's like always just think of the most nasty vile thing

that could spread.

And just think of that like, oh,

that's probably how people

with celiac disease feel with gluten.

That is what I end up explaining more to people

and more to wait staff at restaurants and more to my friends

and family than anything else.

Because they can understand,

"Oh, you can't have the bread."

You know my friends can send me a picture

of, does this sauce have gluten in it?

You know, you tell me.

If you're coming to my house,

I'll do all the cleaning, I'll prep everything

but can you eat this?

Yes.

Okay, but are you prepping with new utensils?

Have you cleaned them?

Wooden spoons.

You know. - Wooden cutting boards.

Wooden, correct.

The pots, the pans.

And going to restaurants, you know,

what is it like in the back of the kitchen?

You know, if it was your son or daughter,

like would you be eating in the kitchen back there

if you had celiac disease?

And sometimes they look at me and they go,

"Oh no, I wouldn't."

The best way to explain it is even like a small crumb

can mean getting sick for a long time.

It was supposed to be a clean plate,

gluten-free, honest, safe.

But danger doesn't always announce itself.

Sometimes it hides in the shadows.

You the chef?

Head chef, 15 years.

This is my kitchen.

They always say that.

Tell me about the gluten-free order.

I wrapped it, put it in the oven,

separate plates, no bread.

Is this the knife?

Where was it earlier?

With the bread

but I wiped it.

With what?

A towel.

Wrong answer, kid.

Funny thing about crumbs, they don't need an invitation.

That?

It's just a crumb.

It's never just a crumb.

This?

This right here can put a celiac down for days.

This crumb has a body count.

One crumb?

That's all it takes.

Crumbs are like lies, kid.

They stick to everything.

So when they ask all these questions.

They're not being difficult.

They're trying to stay healthy.

In my line of work,

there's one thing I know for sure.

Gluten always leaves a trace.

You have to have different pots

and pans, you have to change your water,

you have to change your utensils.

There has to be a separate area when you're cooking.

So I just moved to a new apartment.

And I'm actually moving in with a random

and she was like, "You can just clean the toaster."

And I was like, "Girl, no.

Like I need my whole separate toaster.

Separate colanders, separate everything."

She was like, "Separate utensils?"

And I was like, fork, knives, spoons okay 'cause dishwasher.

But the colander has little tiny holes

and pasta is so hard to clean out of those.

And I don't know, I don't trust it.

What my pediatric gastroenterologist told me

when I was telling him, well we found this place,

we found gluten-free pancakes at the local pancake place.

And he said yes, the pancakes may be gluten-free, Andrea,

and maybe they make them on a separate grill

in a separate area with separate gloves.

But there's pancake batter flying everywhere

and the flour from the pancakes is all in the air.

And that can settle on the gluten-free pancakes

so that you will get cross contamination.

So you can be perfect with your diet

and you can still have issues

and inflammation in your gut leading to symptoms

because of your environment.

If my school is having like an event

or a dance, I ask whoever's in charge of coordinating it

and try to find an alternative for me to eat.

Or sometimes I just bring my own food 'cause that's easier.

Hey. I got you something.

Oh, here we go.

Option one, smile, say thank you.

Eat the cupcake.

Spend the next week violently regretting my decision.

No.

It's chocolate.

I remember that you said that you like chocolate.

I do like chocolate.

I do not like gluten.

Do I tell him?

Do I explain celiac disease?

Do I launch into a Ted talk about autoimmune disorders

in the middle of the hallway?

It's really nice of you.

So, you don't like chocolate?

Great. Cool.

Now he thinks I hate chocolate.

Next, he'll think I hate him.

I should just tell him.

No it's not that. It's not you.

Oh.

Abort mission. Just say it.

I've explained this to teachers, nurses, lunch ladies

and that one substitute who thought gluten was dairy.

I can explain it to one cute boy.

I just can't eat gluten.

Oh, do you have celiac?

Yeah.

My mom has celiac. - Really?

Our whole house is gluten-free.

No chance of cross-contamination.

He used the words cross-contamination unprompted.

Don't worry, this cupcake is safe.

Well the bell's about to ring.

Wanna walk to class?

See, it's not the worst thing in the world to just-

Sure.

You know, some people still think

gluten-free is just a fad.

Yeah.

Those people have never canceled plans

because of a shared kitchen.

Or I had to Google, “Is this sauce lying to me?”

To knowing our limits.

And still enjoying the great outdoors.

Worst part about having celiac disease is dealing

with you people who do not have celiac disease.

Y'all always trying to make me something.

Do not cook me anything in your cross-contaminated kitchen.

That'd be like me trying

to make a kosher meal in a sausage factory.

Oy vey.

31 years ago, it was hard to be gluten-free.

I mean, really, there was no restaurants knew about it.

There was no gluten-free bread in my local grocery store.

It just wasn't a real thing.

Because I was diagnosed so long ago

and there weren't any products

and there weren't any cookbooks and that kind of thing,

I sort of had to figure it all out for myself.

I mean, Google wasn't even really a thing at the time.

So it was hard at first.

We had corn tortillas, we had rice cakes,

we had, you know, a few brands that had some crumbly cookies

and what was the other thing?

Corn pasta.

You know, that was kind of it.

My husband (laughs) at first said,

"What are we going to eat?

Is everything going to taste like cardboard or mud?"

And I said, "No, honey."

20 years ago when you'd look up gluten-free food,

it looked like, you know, it didn't look yummy.

I couldn't just find bread that was good.

Bread that wasn't under $8 a loaf for a teeny tiny loaf of bread.

So I really just worked in my kitchen a lot and baked

and I lived in my kitchen actually

and really played with things

because I couldn't find what I wanted in the stores.

Being gluten-free is so expensive

and our family of five, when my both my brothers

and dad are above six feet tall, we could not really afford

to feed an entire gluten-free household.

So we had to figure out how to do it safely.

And so my mom would make two pots of pasta.

Two of this, two of that, even on Thanksgiving.

We have the gluten-free and then the everything else

because Lord knows

that that would be an extra $200 if everyone had to do it.

People always ask me, what's the hardest part

about eating gluten-free?

And let me tell you, it's trying

to find affordable food in a grocery store.

The food is high as hell.

Yes it is.

It's higher than Snoop Dogg on 4/20 with Willie Nelson.

Okay?

The food is so expensive.

I know 'cause I've been buying food for 10 years.

I've been buying food for so long that's gluten-free,

my bank account is now gluten-free

'cause every time I check my account, ain't no bread in it.

Good evening.

We interrupt your regularly scheduled programming

with breaking news.

Tonight, a local homeowner has been diagnosed

with celiac disease.

Doctors are calling it sudden, unexpected,

and a direct attack on brunch.

We go live now to Janice who's covering

this devastating story.

Janice.

Bob, doctors say the only treatment

for this is a 100% gluten-free diet.

I'm standing in what was once considered a safe kitchen.

That assessment has since been revised.

Gluten is everywhere.

Janice, just to clarify, when you say everywhere,

do you mean metaphorically or literally everywhere?

Quite literally, Bob.

This toaster, once trusted,

has been identified as a repeat offender.

We're being told that this toaster

can never be gluten-free again.

This is a developing story.

We're now hearing reports

that this kitchen may never emotionally recover.

I may never recover, Bob.

Gluten is in the peanut butter.

The jelly, the mayonnaise.

Even the butter.

The butter, Bob.

Disturbing images there Janice. Truly unsettling.

Unsettling for sure, Bob.

Even the appliances aren't safe.

This is a convection oven and an air fryer.

Do you even know how these things work, Bob?

The air just flies around in these things sending crumbs

all over the place.

Janice, is any place in that kitchen safe?

We are treating every surface as gluten positive.

Back to you, Bob.

Thank you, Janice.

This just in.

A GoFundMe has been launched

so this family can afford groceries again.

And now, the weather.

It took me a few years of just being, you know,

kind of depressed and feeling sorry for myself

and not being able to make anything palatable to me,

much less anyone else who didn't have to eat gluten-free.

The first, about three, four months

after I got diagnosed, I basically ate meat, potatoes,

and vegetables because I was too scared to eat.

I don't know how I'm going to do this

because baking gluten-free is a science.

It is truly a science project.

I mean, I can't tell you how many fails I have had.

After several years of baking for myself

and coming up with a few things that worked,

I finally landed upon something

that was basically an all purpose flour,

which is what I kind of really wanted to get to,

'cause it's just too hard to make five different flours

for every different recipe.

So I was one of the first people to write a cookbook,

one of the first people to come up

with a flour, that kind of thing.

So I started a flour company in 2008

and I didn't intend to do it but I just kind of did it

'cause nobody else was doing it.

Hey, it's Jules from GF Jules

and I'm getting ready to go on a big long trip

and I thought I'd show you what I'm packing gluten-free

so that I will not go hungry.

It was really just a mission to say,

"I'm going to make something that's gluten-free.

And even though you can eat gluten, you're not going

to be able to tell that it's gluten-free."

I had a thriving baking business before for over 10 years

and I became a exclusive gluten-free baker.

It's gonna be my sole goal to make sure that people

who live a gluten-free lifestyle

can eat gluten-free deliciousness.

Welcome back to my holiday favorite recipes.

And today, I am sharing my double fruit cobbler recipe.

To have a crust that is crusty

and flaky like this.

I love to reinforce

and encourage people who are newly diagnosed with celiac

that of course, there are things you don't get to have,

but there are still things that you still get to.

And there's a lot of those things

that are naturally gluten-free.

And now I'm at a point,

I'm about 18 months into being celiac

where I can find new foods that I can enjoy all the time.

And there's always something new.

There's a whole world of options that we have now.

You walk down the aisle,

there's 17 different kinds of pastas.

There are so many gluten-free bread companies,

there are amazing bakeries all over the country.

And people that are investing in the science,

investing in how do we make something

that is just really, really good.

The food doesn't have to be gross or disgusting

or you're put up with something because it's gluten-free.

'Cause that's been a big thing we've had to deal with

in the gluten-free space.

Is people going, "Oh, it's gluten-free.

No."

I really want people to be excited about food.

Oh, I can only speak for New York City,

but like gluten-free is getting really good.

It's getting amazing.

Like some of the places I go now in New York,

the gluten-free is actually the better option

and people choose it instead.

I think one of my biggest victories as a person

with celiac disease as a person who loves to cook

is that at a Thanksgiving very recently, my mom

and I decided we were just gonna make everything gluten-free

and not tell anybody.

So the fact that we were able to make this whole meal,

the mac and cheese, the cornbread stuffing the bread,

stuffing, obviously the turkey, the fact

that we were able to make all of that 100% gluten-free

and share it with a table full

of non-celiacs, non-gluten-free people

and they were astounded.

Hey, you remember the first time

that you tried gluten-free pizza?

What time?

The cardboard era or the optimism era?

Those early days were rough.

Yeah, that crust had all the personality

of a math worksheet.

Now though, technology has advanced

Truly.

We can put a rover on Mars

and great gluten-free bagels here on earth.

Progress.

To science.

And to always reading labels like they're mystery novels.

May contain wheat.

The plot thickens.

Processed in a facility that also processes wheat.

Ah, I don't trust a facility that can't commit.

I hear you.

I will say that the food in the grocery store

that's gluten-free has come a long way.

10 years ago, it was trash.

Like if you wanted to get a frozen pizza, you go

to the store, you buy it, bring it home,

take it out the box, then eat the box

'cause it tasted better than the actual pizza.

Now gluten-free food is so good

they're making the box out of the pizza.

Socially how things changed for me a lot

after being diagnosed, it was mainly the eating I think

is, at first it was the biggest, obviously.

Going out, sitting in a restaurant with friends

and then you don't eat or just have a salad.

There's no being spontaneous.

I can't go get a pizza with the boys at 1:00 AM.

Like I can sit there with water

Because people don't take being gluten-free seriously,

it's most difficult when you're at a restaurant

or traveling, that kinda thing.

We would go out of town.

There would be nowhere for me to stop and eat.

And sometimes even the little things would make me sick.

I almost felt like I had to constantly convince people

or overexplain to people why I had to eat this way.

How my mom described it is we would go to restaurants

and she would have the chef come out

and say the words gluten

and I was from, you know, a suburb of New Jersey

and the chef would look at her and go, "What?"

It's so frustrating to go into a restaurant

and ask for something gluten-free

and they'll say, "No, it has butter in it."

Oh my gosh, yes, butter is gluten-free.

Yep.

And then when they ask like, "Well, is it an allergy"

or is it a preference?” Or whatever.

And it's like, you know, it's not your business.

If I'm telling you that I need it to be gluten-free,

then you need to honor that.

You need to be as serious as I am about that.

Usually, I just say like, "No, I'm allergic."

'Cause it's hard to explain what celiac is

and most people understand what an allergy is.

It's really hard to go out with friends.

You almost get uninvited or not invited to a lot of things

because I guess we're just not as fun.

One of the biggest things I had to realize,

and it took like 10 years to do it,

was to eat before I went out.

And that is a strange thing

to think like you're going to a dinner party.

Okay, let me make sure and eat dinner first.

I'm gluten-free, of course, I eat dinner

before I go to a dinner party.

I'm gluten-free.

Of course when I go to a restaurant, my only option

is a salad, no dressing.

Can we talk about dating with Celiac?

I went on my first date-

I was diagnosed with Celiac before my first kiss.

So I remember my first date.

It was Valentine's Day

and I didn't have to ask for a separate menu.

I could secretly, you know,

like they have it all labeled nicely.

And I just was able to order my pasta,

whatever, carbonara just like with gluten-free pasta.

And I got home

and the next couple days, he had texted something

like, “So you're gluten-free.”

And I was like, "How do you know that?"

And he was like, "Well you ordered gluten-free pasta."

And I said, "Why didn't you address it?

Why didn't you say anything?"

And he was like, "Why would I?"

And I was like, okay, I can do this.

That was so nice.

I just went on a date with my new girlfriend.

And-

Does your old girlfriend know?

No, No, no.

She knew what she was getting into.

Yeah, but I was like sick

of having myself like pick the restaurant.

So I let her pick the restaurant

and she was like hesitant but I wanted her to do it.

So she did.

And then we're eating

and it's like there is no options for me at all.

And I could tell by just like her body language

that that was more uncomfortable for her.

Like me not having anything than if we were to just go

to a place that you know, I could eat

and then wasn't as good for her.

Having a partner, a spouse that understands

and not only is like understanding but supportive.

Because like when I went gluten-free,

I was the only one gluten-free in our house.

But we always said if one of our kids got diagnosed

like the whole house was going.

And both of them did get diagnosed.

So obviously, we're almost completely gluten-free now.

But like as soon as my kids got diagnosed,

like my wife rolled up her sleeves

and she's like, "All right, I'm gonna become

the best gluten-free baker."

Isn't that like 15 years we've been together

and she just fully dove in.

I mean, they're from like a German immigrant family,

a lot of homemade cooked breads, all this stuff.

All the stuff. - Gluteny stuff.

Yeah.

And so she just like learned it all gluten-free.

We do the whole house 100% gluten-free.

And 95% of her diet is gluten-free just for the sake

of keeping the house that way.

And it's pretty cool.

If you love someone, why wouldn't you do-

Yeah, of course. - Like the bare minimum?

Like I hear people you know, will comment on some

of my videos and they're like,

"I can't even get my boyfriend to like brush their teeth

after they, " I'm like, “You need to dump them."

There's nothing more romantic than someone brushing

their teeth before they kiss you.

I'm telling you like.

They eat gluten, they're like, they won't brush their

teeth after eating gluten.

Like dump them, leave them.

They don't care about you.

Yeah, yeah.

I'm gonna tell you what's not easy about having

celiac disease when you have to date people.

'Cause they always ask the same question.

What's your love language?

And I'm like, “Not crapping in your car

on the way home.”

Linda,

we need to talk.

Mi amor, our reservations are in half an hour.

It's serious.

Serious like you don't want to go to dinner

or like secret second family serious?

No, it's medical serious.

Sit down.

I spoke with Dr. Reynolds today.

What did he say?

Chase,

what did he say?

He said I was diagnosed with-

What? What?

With a gluten intolerance.

No!

Mi amor!

But spaghetti and pizza night.

Our weekly pancake and waffle couples experience.

I know.

Cinnamon rolls, Chase.

Cinnamon rolls.

And cookies.

No!

Oh my gosh.

I almost-

It's okay.

I got you.

I love you.

Are you sure?

You know that I eat when I'm stressed.

I will protect you.

Even from gluten?

From gluten, from cross-contamination.

I will hit every factory

and force them to decipher labels for us.

Hell, I will fight hand to hand combat with every one

of those cookie elves.

You would do that for me?

I'd do anything for you.

Oh, mi amor.

Next time on "The Young and the Wheatless,"

crumbs are found, trust is shaken

and a potluck will test their marriage.

I am an actress and model and I absolutely love what I do.

I get really excited when I get to be on set.

But the panic sets in when after you book it

and you're like, "Okay, I got the job.

I have to do A, B and C."

Hang on, what do I do about food?

You have to eat, right?

Food is energy.

So there have been times where I've been on set not fed

and maybe I had like a granola bar in my purse

and thankfully, that saved me.

But it's awkward.

It's hard.

When I joined corporate America

and I would get like office lunches.

It would always be like a tossup.

Like will there even be a salad for me?

I'm not even sure.

Then I would have to, I was hangry,

but I had to rush out onto the streets

and buy my own food when everyone else

was getting free food.

It just didn't feel fair.

I was at a work event at a restaurant

and I already ate beforehand.

I knew I couldn't eat. I checked

the menu, I called the restaurant.

I just didn't feel comfortable eating anything

based on their protocols.

And the server felt really bad for me.

They like really wanted me to eat.

They thought I was starving even though I was like,

"I'm fine. I ate, I'll just have a drink."

That they offered me a potato,

like a raw potato because they were nervous

that baking it would be cross-contaminated.

And I was like, I'm really sorry.

I love potatoes

but I'm not trying to be like eating a potato like an apple.

Yeah, work is when I'm bullied the most.

I laugh because it's like,

what do what else can I do?

My current coworkers give me a hard time.

They're like, “Sara, you want this donut?”

And they're like, “Mmm, gluten.”

Like why can't you just take me serious?

Why can't you feel like what this feels?

I remember when I first found out, it was so overwhelming.

I had no idea what to do.

And sometimes the emotional toll is harder

than the physical toll.

Woke up this morning thinking about the time,

it was a week after I got diagnosed with celiac disease

and my boyfriend at the time told me

that a week was long enough and I can't be sad about it.

Actually the exact words were, "Bro, it's been a week.

How are you still depressed about this?"

I'd really, I would really like for people to know

that those of us living with gluten related illnesses,

we suffer from an emotional loss.

You know, I've been doing this for 26 years

and I'm really good at living gluten-free.

But I get really sad sometimes.

And it's an emotional illness as much as anything else

because you know, we are socially isolated in so many ways.

Yeah, I lied when I said it was okay for you

to order the fries and to eat them in front of me.

I don't know.

I never get to order the fries.

It makes me feel really alone.

Like I'm the only one

I lost family members.

I'm not even in contact with my family

because they couldn't understand.

I need a minute.

They couldn't understand why I could not come

to their house anymore if they were frying fish

or frying chicken.

They didn't realize that

at that point, it was gonna make me sick.

My social life is just crap.

I don't like going out to eat 'cause it's not fun.

I used to love potlucks.

You just have to ask all those questions.

I was very social before and now I really can't.

All I do is laugh through the pain to be honest.

I just feel like these days, I get

so upset when I can't work or do the things

that I dream of sometimes.

'cause I'm sick because getting sick

and diagnosed with all these things like by 20 years old,

like stripped me of the things that I really loved.

I have officially encountered gluten on 4th of July.

This is not something that's like,

oh, you're so skinny.

Do you understand how much pain I'm in all the time?

I can’t do this anymore.

I feel real today.

I really feel like I'm going crazy.

I didn't realize the statistics

that autoimmune disease,

over half of the patients will have depression

and over half patients will have anxiety.

Chronic illness, I mean definitely affects mood, identity.

It can cause isolation,

especially a chronic illness like celiac disease.

And we know that isolation alone, social isolation

can lead to depression and make anxiety that much worse.

So I think that the most challenging thing

that the teenagers face is more the social aspect

of the diagnosis.

They sometimes feel excluded.

Then you have peer pressure that, you know,

their friends will say, "No, no, it's fine."

You know, you can have a little bit.”

And they know that they can't have it.

So I think it can be especially challenging

if you have a child or an adolescent

who is more on the reticent quieter side,

a little more introverted to be that advocate.

And I think having support, especially in kids

and teenagers from parents is critical.

They are dealing with a really challenging medical illness

that is lifelong

and affects them in so many different areas of their life.

I call it the spotlight effect.

Yes.

Maybe that's a term already in existence,

but like there's no social setting

where I don't feel like there's a spotlight on me

when food is involved.

I oftentimes feel like a burden.

Oh, always. - All the time.

And that's not a fun way to live,

you know, like, thank you.

Like you said, like I'm grateful that you have this

and thanks for bringing it out,

but I also feel like there's a spotlight

on me whenever I get my food.

And you don't want to be the spotlight.

This is just a communal get together.

You know, you just want to be with everyone

and enjoy that time

and not have that situation be about you.

What can I get for you?

I have a few questions.

Yeah, he always does.

Is the grilled chicken gluten-free?

I think so.

Come on, Paul, it’s chicken.

Is the chicken prepared on a shared surface

or the fries in a shared fryer?

He does this every time we go out.

Wait, why can't you eat gluten?

I have celiac.

Oh, yeah.

That's the gluten allergy.

It's an autoimmune disease.

Wait, so you can't eat anything here, can you?

Not even the bread.

No.

In fact, really, any of this would put me down for days.

That's awful.

I would die if I couldn't eat bread.

I would die if I did eat it, so.

That is a little dramatic.

Oh, that must really suck.

It's fine.

Why don't you guys just go ahead and order

and we'll get started with our lunch meeting?

I went to a big school for college and love that team

and still best friends, you know, to this day

with my buddies and you know, every now and again,

we'll go back for a game

and I actually, for a few years, stopped going.

You know, I'm like, "Oh, this is trivial.

Like this shouldn't bother you."

But I'm like, I love these things like I should be allowed

to enjoy or want to enjoy, right?

Cold beer or two if we're winning

and a hot dog or a sandwich

and you know, you're sitting there

with 100,000 people around you

and I'm just not sure if people realize what that feels.

It's true. - What that feels like.

Going to a game day event is tough.

Yeah, even tailgates,

I literally, just a month ago was at a tailgate party

and people were trying really hard to be inclusive

and they even changed the company

that was gonna be doing the tailgating for us

because their original company, nothing was gluten-free.

Right?

And so they found out I was gluten-free, which,

I mean, I didn't want them to do that.

I mean, I'll bring my own food, right?

And they're like, "All these things are gluten-free."

Everything was meat.

I don't eat meat either.

And then there were two things on there

that were supposed to be not meat and gluten-free.

And I tried to call the catering company

to make sure it was truly gluten-free

and they would never call me back.

And I'm like, I can't be sure that it's really gluten-free

just because they say it's gluten-free.

I can't eat this.

And they rearranged the entire tailgate around me.

I felt so bad.

Every time someone offers you cake

and it's your birthday, it's so nice

that they got you something. So nice.

Or when someone brings you food when you're sick

and it has gluten in it, you don't even wanna tell them

that you can't even eat it because they took the time.

It's hard when you want to do those things

you actually just genuinely wanna be there

and socialize with people.

And you think to yourself,

it really doesn't matter if I'm not eating.

I know I'm gonna take care of myself.

And sometimes I think they're more concerned about us

not eating because it makes them feel awkward.

Absolutely.

And then it becomes a situation where you do feel awkward.

Hey, why aren't you eating?

Oh, I have celiac disease.

Oh my god.

I completely understand.

I'm vegan.

Oh, cool.

It's basically the same thing.

Yeah, except one is a choice

and the other is my intestines trying to destroy itself.

I know.

And it's just so hard to find good restaurants.

Yeah, super hard.

It's gonna be okay.

Hi Celia.

Hi Lauren.

Are you enjoying the party?

I am. Are you?

Oh yes.

I made you gluten-free brownies.

Oh wow. Thank you.

Did you make them in a gluten-free kitchen?

Well I used my regular kitchen.

Oh, how about the pan?

Same pan I always use.

And the spoon?

Wooden.

I'm gonna try them.

Thank you so much.

Oh, you're so welcome.

See ya.

I heard you guys talking.

I think I might have that too.

Celiac disease?

No, but my stomach always gets really bloated

every time I eat pizza.

Just pizza.

Nothing else makes you sick?

No, but I should still probably get tested, right?

Yeah, absolutely.

Yeah, you should.

Yeah.

Probably after my birthday next week though,

we're supposed to go to Olive Garden.

I mean, you know it's impossible

to pass on the breadsticks, right?

So what happens when you eat gluten?

It's complicated.

Does it happen immediately or like how long does it take

for something to start happening to you?

It's pretty quick.

Does it hurt?

Is it like diarrhea?

Oh, because one time I got so sick I had diarrhea

running down my leg.

Is it like that?

We're at a party-

How long does it take to go away?

About as long as this conversation.

I feel your pain.

I checked it for crumbs.

I really have a lot of symptoms.

What happens if you kiss somebody who ate gluten?

Okay.

I appreciate the concern.

And if I don't eat your food

or any food at all, it's not personal.

It's medical.

Let's eat these.

It's easy to talk about the negatives

of what the gluten-free experience is.

But since I started my page, the most rewarding

and rich part is connecting with the community.

I had been cooking for a long time

and so I started Glass of Weinstein

just kind of as a hobby page to throw myself on camera

and show people what I'm making.

Make sure that you are nice and warmed up for an exercise

'cause once you start cooking this risotto,

your arm is just gonna keep working until it's done.

And I think my advocacy really rounded a corner

when I connected with Liz for the first time.

I think the importance of community,

especially when you're dealing with a hidden illness,

is something that you don't know you need

or want until you start searching for it.

And so when I was searching for it

and I couldn't find it, I decided

that I needed to foster it.

It's not just advocacy for gluten-free people,

but it's advocacy and equity for people

that look like Liz in the gluten-free community

to take up more space.

And she's become like my right hand person

in what we call the gluten-free town hall,

which is something

that we do on Instagram to lift up voices in our community

and to share that being gluten-free doesn't look, you know,

one particular way.

The majority of people that you see when you're scrolling

through your feed, you know, are white people.

And so to shed that light

and to shed a really beautiful light

on how many people have this thing,

For the women of color who are watching this

and feeling very isolated and alone

and confused and unheard,

I want them to know

that not only does it get better eventually,

but you will find your people.

And I think even if you don't have a definitive diagnosis,

there is a space for you in this community.

I mean, we're very representative of that.

I don't want anyone to feel like if you have a diagnosis,

if you're a unicorn because you're not.

There are thousands of other people out there like you

who are looking for answers.

"- A lot of people say, ' I got lucky to be diagnosed."

And I feel like that's wrong.

Realistically, a lot of us who got diagnosed,

we had a certain proximity to privilege

in order to be diagnosed.

Maybe it's not luck,

maybe it's just the system working exactly the way

that it was designed to.

And so I thought, "Okay, I'll use this platform

to find the celiac community."

So my first video was just like a sound

of complaining about celiac disease

and I already had a few comments like,

"I have celiac disease too."

And I was like, "Oh my gosh,

there's more than two people in this world

that have celiac disease."

Oh, it's five o'clock.

Candace, you ready?

Martina, you ready?

All right, girls, let's hit the road.

It was just so helpful to know

that other people have it too.

And that's why I get so excited

to meet other people that are gluten-free.

New York City is a hospitality hub.

The biggest social currency is where you got a reservation.

And so there are a ton of really popular food accounts

and there are all these gluten-free accounts that I follow

that are talking about gluten-free.

But no one was kind of selling the New York City

trendy lifestyle that was being sold to the general public.

And I was like, okay,

well, the gluten-free people still want to go to Carbone

but they don't know where to start.

Having celiac is hard enough.

Being the butt of the joke is hard enough.

But when you have the people that will fight for you

who are helping you create that environment,

it's unlike anything else.

So I didn't have someone telling my story

for me to help me.

And that's what all of these influencers are doing now,

which I think is unbelievable.

There's a big community here that's willing to help.

We have a really good community of people,

of advocates.

Being gluten-free has connected me

with so many people in my community.

I remember the time when I did not have

a gluten-free best friend and it is so isolating.

So to be able to keep curating these rooms of people

who just can talk about their poop problems,

it's okay at this dinner party.

Like do it has been so awesome.

I love being able to openly talk about poop.

People who get it. - Talk about it.

Right.

Or lack thereof. - It's not taboo.

Yeah, maybe it's missing, but it's like, it's so normal.

Like it's normal.

People aren't like, "Ew.

Like why are we talking about that at the dinner table?"

I don't know.

We just are.

Break that stigma.

This is what we do.

It's fine. Let's talk about it.

We all get it. - It’s so refreshing.

We all understand each other.

We don't have to fake anything.

We can, you know, be ourselves.

Yeah, we don't have to hide anything.

We can just be, you know when you know your people.

Well, I go to this camp for people

with celiac disease, it's called Camp Weekaneatit.

And I met like a lot of people there

that I'm really good friends with that all have celiac

and it's just nice to know other people.

When I'm at camp, I feel like there's nothing

that's restricting me from anything

and I don't have to think about anything else

in the back of my mind.

And it's really nice to just be able to go to lunch

and just get something to eat without having to be like,

is this gluten-free?

You know what's nice though?

What's that?

Camping food is accidentally gluten-free half the time.

True.

Meat on a stick never asks questions.

Potatoes, always allies.

Corn chips, loyal.

Marshmallows.

Suspicious. - Suspicious.

But usually friendly.

Thank you all for being here.

Remember this is a safe space.

We're here because we care about people with celiac disease.

Let's peel back our feelings.

I was gluten-free, safe for everyone.

And then one time, they boiled me in the same water

as the regular pasta.

I saw Penne.

They said I was safe.

But the fryer, it was shared.

Same oil, same basket.

Same lies.

They put croutons on me

and then just took them off.

I told them I was corn.

They believed me,

but they didn't ask about the tortilla press.

We don't blame ourselves for the kitchens we come from.

I was never gluten-free

or gluten-friendly, whatever that means

but I wanna be.

Let's repeat our mantra.

I am friendly.

I am trying.

What happens after is not my responsibility.

If you know someone with celiac disease, Hashimoto's, EOE,

dermatitis herpetiformis, or anything

that medically requires them to eat gluten-free,

we don't want you to be gluten-friendly.

We want you to be gluten hostile.

That would make you very appealing.

I can remember your mom really wanting

to do something.

Yeah.

You know, I mean we took that cruise

and, you know, you wanted to leave

and it took forever to get the food and-

You said, “I hate celiac disease.”

I had to step away.

Like I remember I went to the bathroom

and I was like, "There has to be another way."

The pressure of that first cruise, 512 people

trusting me to make sure that they were safe.

And, you know, I see their faces the first day

and they're kind of, "Is this too good to be true?"

I mean, everybody sees the crouton on the salad

on the first day. - Every time I'm like, "Are you sure?"

I'm like, it's okay, it's okay.

That too.

But I think seeing people

on day two from the difference of how they feel

and their tension,

but you have that contrast of being able to,

you see conversations happening at dinner.

You see kids running into breakfast and you know,

looking up to mom and saying, "You mean all of it?"

Grown men crying at a buffet.

I mean, grown men crying at a buffet.

Myself included.

Yeah.

And it's almost like watching a movie.

Like I can't even hear anything.

I just see hundreds and hundreds of people,

families, friends, laughing, eating,

and it makes you realize what it is.

It makes you, you don't realize what it is

until it's taken from you

that I just wanna sit with my family and eat.

If you could eat gluten again, what would you eat?

Crescent rolls, the one that come in the can.

A raised glazed donut.

A real good, nice, fluffy bagel.

New York dollar pizza and wonton soup.

I would get a big fat giant burrito.

Like those big fat ones where it's a different meal

as you're going around it.

Oh my gosh, I miss that.

That would be so good.

Doing this as being a social media influencer

can be very isolating.

But when you get together, like being here and connecting

and seeing you guys and collaborating together,

I can't even describe the feeling.

It's like as soon as you just get together,

it's like a connection gets put there.

There's an anxiety that just gets lifted off.

It's so interesting that feeling,

'cause it's like we're all normal technically, right?

Like when I'm with my friends who are actually like,

can eat whatever they want, everything's fine.

I'm like, I feel like the odd one out.

Even though so inclusive, everything,

but it's when you're with people

that actually understand it's that feeling from inside

that you're like, they get it.

They get exactly what I'm going through.

Well it's fun 'cause it's like, all right,

we all make content so we're here together

and like I've recorded a video with each of you

just to post on TikTok or whatever.

But at the same time, like on a deeper level,

like obviously, I live with my kids who have celiac disease,

but I don't know any others in real life.

So down here it's like okay, not only do we all eat

the same diet, but like we all get the mental load.

Hi what can I get you?

Is your vodka distilled from corn or wheat?

Vodka is vodka.

That's not an answer.

Do you use a shared shaker?

We rinse it.

Great, with what? Hope?

Ma'am, what do you need?

I need it to be gluten-free but not just gluten-free.

I really need it to be celiac safe.

What?

Hashimoto's.

Dermatitis herpetiformis.

Celiac disease.

This is the weirdest singles night ever.

Can I get you a beer?

No!

Laughing

So you guys are here for singles night?

Yeah!

My kid asked me why we eat gluten-free.

What'd you say?

Well I said because our bodies are divas.

We need special lighting and specific snacks

and immediate feedback.

Relatable.

My stomach sends notes.

Passive-aggressive ones.

Dear Dan, we talked about this.

Signed, your small intestine

Because celiac disease is a genetic condition,

it's something that can affect families.

So siblings, parents, children.

My second child who was two at the time,

he would just wake up like once or twice a week

and he would just be like a ghost.

Like he was just pale in the face.

It was like pale gray or blue.

He was just extremely fatigued all the time.

And we would take him to a playground. He would sit

at a picnic table and just bury his head in his arms

'cause he was just too tired to go and play.

I started seeing symptoms in my daughter

and I recognized it and I went

and said, "I need her to get tested for celiac disease."

And her doctor said, "I don't think she has it."

We ended up getting him tested

and the blood work showed that his numbers

for celiac were off the charts.

My daughter's blood work came like off the charts

and she was only consuming gluten at school three days

a week, one time a day and her for like maybe six months.

And her numbers were completely off the chart.

My kids getting diagnosed

with celiac was very complex emotions.

Because on the one hand, you're very grateful

that you have answers for what's going on.

Like the worst thing is like not knowing

why something's happening.

But then once they did get diagnosed

and we're like, okay, this is what's causing this,

there's an extreme sense of guilt.

This is my fault that they have this

and no one but me has made me feel that way.

In that moment,

like when, you know, we went through all the testing

and she got the official diagnosis,

I cried, I remember I cried.

I felt so guilty.

I was like this is my fault.

My child has to live with this disease because of me.

Oh, I'm gonna cry.

The thing after I told my daughter

and she was like, "It's okay, mommy.

Like you're the best mommy for me.

Like you know how to take care of this.

Like you know, all the good snacks."

That was really hard because I had my own emotions

about like to turn my life upside down.

Yeah.

And then the feeling of giving it to you,

you know that was hard.

Very hard.

But it has brought us close.

So it gives me a connection with my dad

'cause obviously, he has celiac too.

And being able to go home

and like tell him like something that happened

that has to do with Celiac.

Telling him I wanted something but I couldn't have it.

Having someone to talk to, like always

that's around me is really helpful for me.

I felt so grateful to know what I know

and I felt put on this earth to be her mom specifically

and to do what I do to educate

and know so that I can properly take care of her.

One of the first words I taught her to read was gluten

and free because I'm like, you need to know

how to read these words on packaging.

So “gluten-free.” So she can read gluten-free

and she knows the certified gluten-free label.

I always said this is just not a one person diagnosis.

You have the whole family.

The whole family needs to make adjustments.

What about your household, did your wife-

Is your whole household gluten-free?

She-

So,

our house is about 99% gluten-free.

I say so like my wife has her cheesecake

and ice cream that she keeps

in like the bottom corner of the freezer.

But like, she's amazing 'cause like when she has it,

it's always after the boys go to bed

and she'll bring it out.

She'll eat it in the spot.

She Lysols it afterwards like,

and she'll say it.

She's like, "I'm worried about having it

in the house making you sick."

I'm like, "I'm not worried about that

'cause you're so careful."

Like I'm worried about accidentally buying something

that I think is gluten-free and isn't.

So holidays are coming up

and I feel so overwhelmed, Christmas and Thanksgiving

because I have to get up at the crack of dawn,

make a full meal

and be finished so that my husband can go

to my mother-in-law's house.

And I don't go anymore

because they're gonna be frying fish,

they're gonna be frying chicken.

My kids don't go to grandma's house no more

because they started feeling guilty about leaving me

at home alone you know?

And so-

Holidays have been very, very lonely

and my kids recognize that.

I think it's so exhausting to make the whole meal

and when you're expected to bring your whole meal

to someone else's house instead

of just having it at your house, you know,

it feels silly I think.

And it just kind of makes the holidays feel

less exciting because it's just more work on top of it.

♪ Sometimes life's a little bit lonely ♪

♪ And I need somebody who knows me ♪

♪ To come and make it brighter ♪

♪ Bring the color back ♪

♪ Silly, silly celiac ♪

Hey mom.

Just so you know, we're heading

to Aunt Susie's around five.

Ah, I love going to Aunt Susie’s.

She always makes me gluten-free pasta.

Well, Aunt Susie is getting older.

Okay?

Don't make her cook two different meals.

Ooooh!

I didn't make her-

Don't be difficult.

Silly, silly celiac!

Hey wait, no, that's my toaster.

Relax.

It'll only be in there for like two seconds.

It's not safe for me, the crumbs.

Cool.

Later.

Silly, silly celiac!

Morning, kiddo.

Morning.

Hey, quick question.

Can I use your jelly for my toast?

No.

Awww.

What if I just don't scrape hard?

No.

Awww.

You know, when I don't like something,

I just eat around it.

I don't dislike gluten.

It's not always easy buying two of everything.

Silly, silly celiac!

I don't do this for attention.

I don't do this to be difficult.

I don't do this because I want to spend extra money.

I do this because my body will attack itself

if I eat gluten.

So I can't use your jelly?

You get it, right?

Silly, silly celiac.

♪ Silly, silly celiac ♪

I think we really need a systemic change

in medicine of education.

A lot has changed even in research since I went

to medical school very many years ago.

But we need to bring everybody up to the same level

of knowing that there's a genetic predisposition

to autoimmune diseases.

Diagnosis really does need

to move maybe into the 21st century, right?

To tell somebody they have to eat gluten to be able

to measure levels

is totally ridiculous.

I think the delay in diagnosis

of celiac disease is unfortunately a major problem

with healthcare in this country.

We look at Italy

and it's a law there for kids

to be tested, I believe before they turn 18.

I think that something that will help.

It's recognizing the symptoms.

And in pediatrics, simple things as, oh,

belly pain, constipation, diarrhea, those are signs

of celiac disease.

We need to think if somebody is presenting with anxiety

or ADHD or depression,

what could be going on medically first.

More and more awareness is going on for many reasons,

including social media,

patients able to read about their symptoms.

Especially these celiac patients who have been going

through the ringer of diagnosis and not getting any better

and not having any diagnosis.

They read up and ask their doctor.

That's where it starts.

And the primary care doctors are also getting more awareness

and more research is going on

in terms of the genetic testing.

Even the treatment options may be coming

through in the pipeline in next few years.

I've met with some of the experts up at Mass General.

I'm hopeful that the drugs

that they are working on will make a difference

and if they are doing studies, it can help.

I'm really hopeful about the future with this illness.

We're doing so much more than we were

back when I was a medical student 25 years ago

and it wasn't even taught about.

Hey, Dan.

Yeah, Mike?

This beer's actually pretty good.

I told ya.

No gluten, all great vibes.

You know what's not easy?

Eating out when you have celiac disease.

I told the waiter that I eat gluten-free,

he rolled his eyes at me talking about,

"Is that some kind of fad diet?"

I said, "Yes, and it's called life.

As in I'm trying to keep mine."

Because of the celebrities and all the fad dieters,

you know, I'm gonna lose weight because I went gluten-free.

I think it's really easy to poke fun

because you don't think you're hurting somebody.

The fact that it became a big pop culture talking point,

it was iconic, it was a fad in a lot of ways.

And you go, oh, maybe that's part

of what just happens when something becomes so big.

And there's a lot of people who are like,

"I don't really believe in it."

And there's a lot of people who have, you know,

transformed it because of the fad

into something that is hard to believe.

And I think it's totally impacted our community

because people don't take us seriously.

I think gluten has become a joke

because maybe people in comedy are a little lazy.

People who are marginalized in society

or kind of on the outskirts or are slightly different

who deviate from the norm can easily become

the target of comedy.

People just make fun of things they don't understand,

which is why people bully people that are overweight.

I had my whole life, or people that bully somebody

'cause they're different or their skin's different.

I think they just don't, haven't done the research

to understand that when you joke about something

that could kill me, it's not funny.

They don't understand that it is a disease.

It is a medical condition.

So maybe it comes down to just a lack of education,

a lack of resources.

They're coming at it from a place of ignorance.

I don't fault them with that because I was ignorant

before I was diagnosed.

I don't make fun of people that don't know what it is

because that was me.

That literally was me.

I remember saying to someone in seventh grade

knowing that she was gluten-free.

"Oh my god, you can't eat anything."

And I've been guilty in the past for making it a joke too,

because I use it as a defense mechanism.

It's easier to joke rather than to say, "Hey,

what exactly does that mean?

Could you explain it to me?"

Because that's making them feel small.

If we're the ones with the disease, we're the ones

that should make the joke

and it shouldn't be at our expense.

I think there need to be bigger conversations

at large about this thing.

How are we going to change the narrative?

Gluten is a joke, but not to me

and the millions of people who live with celiac disease.

It's not a fad.

This is not paleo. This is not keto.

It is a disease that I have to deal with every day.

Unwillingly.

I didn't choose to have celiac disease.

Celiac disease chose me.

And it's not very funny.

Gluten is a joke until it happens to you

or someone that you love.

Gluten is a joke, but for me, it's life or death.

Gluten is a joke, but I've definitely cried

more times than I've laughed.

Gluten is a joke

but it really shouldn't be.

Gluten is a joke

but my body didn't get the punchline.

Gluten is a joke

but only when I'm telling it.

Gluten is a joke

but I'm gonna have the last laugh.

Gluten is a joke

‘til this documentary drops.

Excuse me, miss, are you made without wheat?

'Cause you got everything I've been missing.

Hey, girl, in a world of risks,

you feel like a safe menu option.

When I eat bread, I have mass inflammation.

Go out with me now and end my frustration.

You're gross.

You're gross.

Hey, girl, you had me at dedicated fryer.

Right.

I read labels slowly, then read them again.

One look at you has you stuck in my brain.

Oh my God, you're serious?

You know, I don't trust many restaurants,

but I do trust this vibe.

No.

Ooh, girl.

Are you a gluten-free bakery?

Because I'd drive hours for a piece of that cake.

I don't even see a gluten-free menu.

Well, I'm not a menu, but I am gluten-free.

Oh.

Ooh.