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>> Hello and welcome to AdvocateLive,
where we answer your questions from some
of the world's leading health experts who are part
of the Advocate Healthcare family.
I am Stephanie Johnson.
Today we are talking celiac disease and joining us
in studio is Pediatric-Gastroenterologist,
Dr. Garcia-Alvarez and registered dietitian Carrie Ek both
with Advocate Children's Hospital
in the Park Ridge, Illinois.
Welcome.
>> Thank you.
>> Good morning.
Thank you having us here.
>> So delighted to have you both on the show.
This is a very hot topic.
So before we get started though,
I wanted to have each of you tell us a little bit
about yourselves, how long you've been with Advocate.
We'll start with you Dr. Garcia.
>> I have been with Advocate already for almost 10 years
and right now I'm the Medical Director
of the Pediatrics Celiac Center
at Advocate Children's Hospital.
>> All right.
Welcome again.
>> Thank you so much.
>> Now you look so beautiful in your white [inaudible].
[ Laughter ]
OK, so Carrie, tell us a little bit about yourself.
>> I'm a registered dietitian and I'm the nutritionist
for the Pediatrics Celiac Center
and I'm also the coordinator of the celiac center.
And I work with children and adults with all sorts
of nutrition-related problems.
A lot of work with celiac disease especially
in the last few years.
>> Well, we got a lot of questions for both of you.
This is a hot topic.
Celiac disease itself in particular the gluten-free diet
that is associated with celiac disease.
So if you are watching us on Facebook right now,
you can join the conversation
and get your question answered there.
If you're checking us
at on Advocate's webpage just click Submit A Question.
So we will get the ball rolling with the question that came
in from Courtney [assumed spelling]
which is an excellent way to start.
And we'll start with you Dr. Garcia-Alvarez.
What exactly is celiac disease and how common is it?
>> I think it's really a great question
to start the conversation
because many times people is not very cleared
about celiac disease and more what we have now
for the last couple of years.
But celiac disease is an autoimmune disease.
It is an immune reaction of your body
against a protein called gluten that it comes
in rye, barley and wheat.
And then as a consequence you have an inflammation
of the lining of your small intestine.
That means that you will not be edible
to absorb the nutrients and then you may have diarrhea
or another symptoms that we will discuss later on.
And it's not frequent too
that we may believe right now is about one in 130.
So in 130 people, one of them is with a celiac disease.
Yes.
>> So one in 30.
>> Yes.
>> OK. So when it comes to kids
and even adults I mean you can toggle in between both.
What symptoms can one see in child as well as in adult?
>> Absolutely, it comes in different presentations.
>> OK.
>> In the old times, we all know
about celiac disease present in this toddler
with a big belly, wasted, really malnourished but right now
that has changed a lot.
We can have kids that they have only abdominal distention.
They may have-- they may not eat very well.
They may have belly pain and complain about that.
And then to the parents to bring
to the pediatrician those symptoms
and the pediatrician get a little bit further
and then to test and screen for celiac disease.
>> So those are the things to look out for
and then parents can bring that as well.
And it's kind of like a partnership
to make sure the kid is OK.
>> So Carrie let me transition over to you
because in the past couple of years,
the gluten-free diet has taken off and not necessarily
because of this association with celiac disease.
You have famous celebrities that are tying the diet
because it's been associated with weight loss.
So can you tell us is it--
and this is a great question from Rhonda [assumed spelling]
who wants to know-- should--
can anybody just go on a gluten-free diet.
Should you go on it if you do not have celiac disease?
>> Well, I think it's important to keep in mind for people
with celiac disease, the gluten-free diet is really not
a choice.
It's a-- only medical treatment for celiac disease.
For other people that are trying the gluten-free diet,
there's no harm in really going gluten-free
but it's rather still kind of controversial.
All people don't know
if there's really any true health benefits to it
but it really, it can't hurt somebody to go
on a gluten-free diet as long as they're eating a variety
of foods and that sort of thing.
I'm not-- it doesn't help everyone to loose weight.
>> OK.
>> That's the bottom line.
It's really a trend right now.
>> OK.
>> And as far as, you know, it's always a diet trend
and the gluten-free diet is huge right now.
>> OK. So that goes right into the next question I came
from Christian [assumed spelling] who says, what's allowed--
and that might, you know,
lend something to you're-- what you just said.
Not every-- if you know, it's not a diet.
Not everybody will lose weight.
It's necessarily associated with it.
But maybe people are losing weight
because of what's off to table.
Can you tell us what's got of a gluten-free diet?
>> Well, the gluten is contained in wheat, rye and barley.
And wheat is the most prevalent in our everyday diet.
So it includes breads--
all regular breads and sometimes you will be confused
about whether it's whole wheat versus white bread.
They both contain wheat so all of the breads--
regular breads, pastas, crackers, cakes, pies, cookies,
pizza crust contains gluten.
Beer contains gluten so it's all--
even soy sauce has gluten in it which a lot
of people don't realize because it's wheat fermented
and that's in a lot of frozen prepared foods even
in marinades.
So it's so-- when people are really doing a hundred percent
gluten-free, it's a lot of foods.
And for people who have celiac disease they really need
to be honest strict to gluten-free diet
which means really all the gluten is out of the diet.
For other people that are sort of trying gluten-free,
they probably don't need to be as strict.
>> OK.
>> So you do see, there's a lot to cut out to your diet
so some people may experience weight loss
because of cutting--
>> Absolutely.
>> All of the flour, the foods.
>> They're just eating less.
[ Laughter ]
>> And less junk.
>> Less prepared foods.
>> Well, I have a small confession to make.
I tried a gluten-free diet.
I really did and I didn't last two days because I just--
it just didn't I tried some spaghetti it didn't go well
but let me say this.
And this is leading to a question from myself.
If I can't stay on it-- I'm not like most--
I'm kind of kid-like but how do you get a kid
to have or to comply?
You both work with kids everyday.
Is it difficult to get them to really stick to the diet?
>> It's mostly after the diagnosis.
It is difficult and you-- but most of these is overwhelming.
>> OK.
>> It's changing the whole lifestyle, you know,
from your pizza, your cakes,
and then suddenly for the adults the beer.
And suddenly you have to change your--
way that you eat, the way you drink.
So it's overwhelming.
>> OK.
>> So, the family struggle at the beginning a little bit
on how to find the ingredients, how--
where is safe, and Carrie, you can put on that too so.
But, you know, that's the idea.
Again, going back to the center, we can help with that.
So that's the beauty of that.
But kids are good at the beginning
because their parents really, really [inaudible] like hogs.
And then during the time that they're in their adolescence
that teenagers, that's
when it comes a little bit more complicated
but they realize eventually and they learn what they have
to do right for them so.
>> So Carrie then to you.
Do you always recommend that whole house go on it?
I mean if it's a kid, the parents need to go on it too.
How hard is that for--
I mean 'cause it will be really hard for me
to watch my husband eat a piece of chicken--
fried chicken and then I couldn't have it.
>> Right. I think it's really different
when you have a child
and has celiac disease versus in adults.
So in terms of the whole house going gluten-free,
it's really-- each household does it differently.
It's really up to them-- up to the family.
Some families choose to do the whole house gluten-free
because especially for very young children because they feel
as though it's-- everything in the home is safe
for the child to eat which is a good thing
but it's not absolutely necessary.
The thing that we mostly are concerned about with--
if the whole house is not gluten-free is the
cross-contamination issue because really you need
to have everything as gluten-free as possible.
Meaning that-- things like butter containers,
they need to have a separate one
for the child that's gluten-free versus everybody else
in the house 'cause it may not sound like a lot
but it really is a significant amount of gluten.
If you're buttering your bread
and then you stick your knife back in the butter
and then you put it back on a gluten-free bread,
those bread crumbs have a really significant amount
of gluten.
And this is an autoimmune disease.
This is not a choice.
This is something that can be harmful to people.
So, you know, we really have to keep the food separate.
>> OK.
>> And that's what you can see in restaurants, right.
That's the hard part about eating out because you really--
restaurants have come a long way and they're much better
than they used to be,
but you really don't know what they're doing in the back.
So you really have to ask a lot of questions
and be diligent about, you know,
making sure that your server knows
that you really have celiac disease.
You know, a lot of times they will ask, you know,
are you just gluten-free or do you have some celiac disease
or is it a food allergy?
So as serious as you can make it to the server,
the better off you are.
>> All right.
Let's go-- let's move to a serious question
which I think is a great one that came
in from Sandra [assumed spelling] who wants
to know how serious is the disease?
This is a different disease
because you're not necessarily treating a child
with pills and so forth.
So can you talk to us a little bit about the severity
of it and treatment?
>> Absolutely.
A good statement that you made already is
like we have the three methods that is the gluten-free diet
so that's the beauty of that.
If it's untreated, it can be serious.
It's that not only on children, adult as well.
Let's try to explain to them that, you know,
they may continue with abdominal pain,
they may continue not growing well, and these are not going
to puberty, not developing appropriately.
They can continue if they don't follow the diet,
osteoporosis in adults and they can anemia, of course.
And later on in life, and we are talking later on,
even the possibility, remote and rare
but possible even lymphoma of the small bowel.
>> A very good information,
and let me move to another question for you that kind
of trends on the same line.
Is it possible-- I mean because you talked
about the severity of the disease to have it
and not have any symptoms?
>> That's a very big yes.
>> Oh wow.
>> That's a very big yes.
And this is part of the awareness part that we're teaching
and education that we do.
You can have-- yes-- celiac disease and be asymptomatic.
And you may wonder how we find those patients
and normally we do that doing screening
through other family members that they have been diagnosed
with celiac disease, all populations that at higher risk
like patients with Down syndrome, William syndrome, turner,
patients with type 1 diabetes, hypothyroid.
So sometimes they do not have symptoms at all but we know
and we screen them so that's how we know.
>> All right.
Great question.
And then a question that came
in from Vince [assumed spelling] on Facebook.
And you just-- you know,
it goes right into what you just said
because you said you can look at parents and so forth
and we know with other diseases like cancer
or high blood pressure.
They can be hereditary.
So is celiac disease hereditary?
Is there-- can you look for the family for clues?
>> It does help-- we have a very good genetic testing
about that.
It does run in the family.
You have to have two particular, we call alleles,
that is their genetic information.
In order-- either one or the other or both in order
to have celiac disease.
And family history is very important so when we are asking
about is your aunt or our uncle, sometimes we have yes.
You know, my auntie has a stomach problem.
So sometimes it was not even diagnosed
but genetics is important.
It gives you a genetic predisposition the way we got.
>> All right, very good information.
We're going to take a quick polls check on the audience.
If you are just joining us,
we are talking about celiac disease
with Pediatric-Gastroenterologist, Dr. Garcia-Alvarez
and registered dietitian Carrie Ek both
with Advocate Children's Hospital in Park Ridge.
You can join the conversation right now either on Facebook
or Advocates home web page.
So Carrie let's move to a question from you that came
in from Karen [assumed spelling].
She says she has two sons both are gluten
and dairy intolerant.
Are there specific things that she can do to help them?
>> Well, I assume that she's already, you know--
>> Yes.
>> Started the gluten-free diet and the dairy free diet.
>> She wants to know about supplements or anything
because they're kids and they're younger,
in addition to the diets.
>> Well, you know a general multivitamin is usually a good
idea for most people.
The multivitamins sometimes can contain gluten or dairy even
so it's-- the labeling has come a long way on those
so it's good idea to check the label as far
as that goes as well.
The gluten-free diet sometimes can be a little bit low
in B vitamins because most
of the gluten-free grains are not enriched in the same way
that the sort of regular wheat containing grains
are enriched.
And that's getting better though,
so if you take a general multivitamin
that usually covers it.
As far as-- it's when someone goes dairy free we always
worry about calcium, if they're getting enough calcium.
So usually people especially children will need
to have a calcium supplement if they're going dairy free.
There are other options like if they're--
if for example they're doing soy milk.
Soy milk is usually calcium enriched or calcium fortified
and that can provide the calcium they need as well.
>> Very great information, and then I'll just get one more
from you quick answer from Kathleen [assumed spelling]
who wants to know is it, you know,
adults when it comes to as we have a lot of choices.
We can choose to go to gluten-free if we wanted to or not
or try any kind of fad diet for that matter.
Is it OK to do it for kids just I mean even
if they don't have it, don't have celiac disease,
should you put kids on a gluten-free diet
or any other kind of diet?
>> That's a really good question.
I don't think anybody really has the answer
to that honestly but.
I would hesitate to put a child
on a gluten-free diet unless I have a good reason for it
because it impacts-- it impacts so many
of their food choices that they would be limited for.
I mean you'd have to really look at what the reasons are
for it if there's a-- if they were truly.
If they suspected the child has celiac disease they should
be tested for it.
>> OK.
>> And then I would just kind of talk with your doctor
and take it from there.
>> OK. Very good information and then that leads right
to you Dr. Garcia-Alvarez to answer Carrie's question.
Can-- how are you tested
for it 'cause you just mentioned getting tested
and how accurate are testing procedures?
>> That's a great question and I'm glad
that we have this question because I want to make sure
that we discussed this.
Your doctor can do a blood test.
The blood test is a screening test.
It's going to tell us if there is suspicion
or not to have celiac disease
but it does not give the diagnosis.
The diagnosis is still done with--
we need the biopsies and I know sometimes the parents are a
little reluctant about the biopsy part
but it's really important because it is something
that you are going to have for life.
So you really want to have the accurate diagnosis.
So yes, there is a screening test.
It's a blood test.
It's very accurate.
In the medical world we said specificity and sensibility
and it is quite good is almost ninety eight percent
but still there is this two percent
that you really need to focus.
So that's why yes, screening is very good, quite accurate
but the diagnosis is made with biopsies.
>> All right.
So another great question that came
in from Rob [assumed spelling] in it's two-folds
so I'll get you to answer both doctor.
Is one-- can you just work with your primary care physician
to get through this or do you need a specialist?
>> Well, initially if your child is having any problems
and we discussed them through the belly pain,
the distention of growing well, you're going to bring this
to the attention of your pediatrician.
Your pediatrician will check for the screening test
that we have discussed
and then if it's positive then surely will send you
to pediatric-gastroenterologist
and then from there we'll have the biopsies
and then they diagnose or not.
>> All right.
That's the important part and the second part
of that question which I think is an excellent one.
And you touched on it a little bit earlier,
you said that's oftentimes in some cases,
a child or an adult may not experience any symptoms
when it comes to celiac disease.
So Rob [assumed spelling] wanted
to know can you just ignore it, will you be OK?
>> I mean if-- you mean the symptoms,
I would not ignore the symptoms obviously
but if your screening comes positive
for celiac disease definitely it should not be ignored.
Because like I said before
if it is untreated it can develop other problems later
on in life and it's important to take care of that.
>> All right.
So Carrie mentioned earlier that question that came
in about the dairy intolerance
and then also the gluten intolerance.
Is there a link between the two?
>> Well, there is a link.
And it's not unusual that we're seeing our clinic.
The parent says, "Oh,
my kid I think is lactose intolerance."
And what may happen is that remember that I explained
at the beginning that there is an inflammation
and damaged on the small bowel.
So all the enzymes there that are to digest the lactose
that is the sugar, in milk, in dairy products,
they're not there any longer.
So you kind of, you know, you cannot digest your lactose
and that that goes directly to your, you know,
larger bowel and, you know, you have sometimes diarrhea,
more belly pain, and bloating.
So that's the correlation, but once--
most of the time once you are on a gluten-free diet
and you allow time to regenerate all these, you know,
the good stuff back then eventually, you know,
it may happen that you are back to able
to tolerate some milk on dairy products.
>> Excellent information.
So Carrie quick question for you
because we're almost out of time.
Can you believe it?
It's gone so fast.
But Thanksgiving holiday is just ahead
and a lot of people are preparing their meals,
parents who are watching,
who will be cooking some gluten-free things for their kids.
So can you tell us some items that, you know,
that maybe tasty to put on the table.
And also a question that came in was
if you're preparing turkey and the stuffing, you know,
people love the cornbread stuffing, it's so delicious.
Even if the stuffing is in there
and it's not touching necessarily the outside of the turkey,
can your kids still have that turkey or no?
>> No.
>> No?
>> No. That's as short the answer.
>> Oh no.
>> Let me just say too that cornbread usually has wheat
in it depending on how it's prepared.
So if it's a true cornbread,
'cause corn is naturally gluten-free.
Corn, potatoes and rice are the grains
that are naturally gluten-free.
So if it's only corn that's
in the cornbread that would be OK.
But the wheat, again,
I was talking about the cross-contamination before.
If there's wheat in the stuffing which most
of the time there is, it's sort of leeches into the meat.
So that would make the meat contain gluten.
>> Any other good items you may have.
>>So actually, you know, as much as--
Thanksgiving is a lot of work to prepare the meal of course
for anybody but I think for a lot of people,
it's probably less stressful if you take
over the preparation of the meal
because you're in control then.
So, you know, you can make sure
that everything is indeed gluten-free.
So a lot of the foods
at Thanksgiving are naturally gluten-free
like the turkey can be gluten-free.
Most meats are generally gluten-free.
I would double check the label of course
because sometimes the gravy packets usually will have gluten
in it or sometimes the bastings can have gluten in it.
But the turkey, the potatoes, the vegetables,
many of the things-- those things are naturally gluten-free.
So people can choose those foods.
The other thing is again this cross-contamination issue.
So depending on how many people you have at the table
that actually are gluten-free,
you may want to just have the whole entire meal be
gluten-free and that's probably the easiest of all,
but if you have some dishes that contain gluten
and some that are gluten-free you want
to make sure you have separate serving spoons
and then the person that is gluten-free is aware
to not touch those or no one puts spoon,
you know, back and forth.
>> Wow. Lot of management but can be done.
OK. So we are out of time.
Can you believe it?
But before we go, can you just give us one key takeaway
that you would want someone to takeaway
from this discussion?
We'll start with you.
>> That the gluten-free diet as hard as it is to do.
It can be done.
There's many foods that are naturally gluten-free
like I said meats, potatoes, corn, vegetables, fruits,
dairy foods are almost always gluten-free.
And the gluten-free diet really works for people
who have celiac disease.
People can either gluten-free diet
and their intestine can heal.
They can live full life.
They can do everything that they ever wanted to do.
They can be in the Olympics, they can run, you know,
marathon or that sort of things.
So there is a lot of hope for people
who have celiac disease.
>> And kids?
>> And kids.
>> The kids.
>> Yes, of course.
>> OK. Kids are important.
OK. So what about you?
Key takeaway?
>> Absolutely, one is that-- an important is that if--
and your kids, any of those have any problems with the--
all the problems that we have discussed today,
please bring those to the attention of your doctor.
It's important, this conversation we are having
for awareness and then, you know, proper diagnosis
and of course for it Carrie with a gluten-free diet.
>> All right.
Very good information from both of you.
A lot of information, it helped in like me
and I'm sure everyone else who's watching this show.
And that wraps up this edition of AdvocateLive.
It's so sad it came-- it went, it came.
It went-- it went so fast.
Remember you can text the word AdvocateLive to 8444
to receive regular alerts about upcoming chats.
And stay connected with us 24/7 on Facebook
or at ahchealthenews.com.
Also we are going to leave you today
with a special look at one little girl.
Her name is McKinsey [assumed spelling].
She was treated at Advocate Children's Hospital
by these two lovely ladies.
And she got a newly found life
after receiving care for celiac disease.
So have a great day everybody.
Enjoy that.
>> Thank you.
>> [Background Music] We had never really heard
of celiac before.
>> Celiac disease is an autoimmune disease
where the small intestine is actually damaged
by the person eating gluten containing foods.
>> I wasn't depressed but I was sad that I couldn't eat
like doughnuts and stuff.
>> Gluten is the protein part of certain grains.
It's in wheat, rye and barley.
>> I think I went crazy and filled the kitchen
with every kind of gluten-free food there was.
>> Yeah.
>> Everybody's really happy about the corn?
>> Yeah.
>> Yeah.
>> Carrie Ek explained everything like what wheat was
and what gluten was and that how it's bad for me.
>> Suzie [assumed spelling] made the change.
She would actually finished her meal
without complaining her stomach goes hard or anything.
>> I started growing taller right away and I gained weight
like I normally should of.
And I started catching up to my friends with height.
>> Hello.
>> Hello.
>> Are you serious?
>> Yeah, mom.
>> Can I get--
>> Her mom and dad have been great.
I mean I think that's really a lot
of the reason why she's done really well.
They're very proactive.
>> My mom went gluten-free
with me 'cause I don't want to be alone.
It was just very hard at first but then she get better.
>> When you're baking cookies and stuff,
if you're using some of the gluten-free flours,
they're kind of grainy.
And so we found this flour online that we really like.
>> So once she started finding things that McKinsey liked
and reminded her of, you know,
the food she could eat before it all started,
that's what made relief to her.
>> But, you know, when I made her cookies with this flour,
she said, "Mom, it tastes like it used to."
So that was a big deal.
[ Music ]
>> [Background Music] These are my gluten-free [inaudible],
they're very good.
These are just regular old grapes
and I bought gluten-free cookies for everyone.
Becka [assumed spelling], Erin [assumed spelling].
>> Most people that have celiac disease do not know
that they have it.
And in children we worry a lot about their growth
and the long term problems that can come
if the celiac disease is not found and diagnosed.
>> The Pediatric celiac center
on Advocate Children's Hospital, we help with the families
from day number one.
When they get the diagnosis we would help them to navigate
through those labels and through the grocery stores help
them navigating as well through the restaurants,
how to ask for the gluten-free milk.
>> So this chicken mix is kind of nice.
It's just chicken breast.
>> I am not scared about my celiac anymore.
I don't feel different because my friends are always there.
[ Music ]
And there are worst things that could happen to you.
So celiac is just one little thing.
>> Everybody at Advocate is committed
to making her feel good.
They were committed to finally finding the treatment
that made her feel totally a hundred percent well.
[ Music ]
[ Silence ]