April 1, 2025 • 25 mins
Note: Turn it up! Our guest is very soft spoken; unlike your hosts!
What if that chronic stomach pain, fatigue, or brain fog isn't just "part of getting older" but a serious autoimmune condition affecting millions? Join mother-grandson duo Jane and Dustyn as they share their personal journeys with celiac disease, an often misunderstood condition that went undiagnosed for decades in Jane's case.
You'll discover why the distinction between "gluten-free" and "celiac-safe" could be life-changing for those with this condition. When even 1/350th of a slice of bread can trigger an immune response lasting weeks or months, cross-contamination isn't just an inconvenience—it's a serious health risk. The hosts also explain the connection between untreated celiac and increased cancer risks, and why you should never eliminate gluten before getting tested.
Whether you suspect you might have celiac disease or simply want to understand what your gluten-sensitive friends experience, this episode offers insights that could transform how you think about food, chronic illness, and the importance of proper diagnosis. This isn't about following trends—it's about recognizing a legitimate medical condition that affects approximately 1% of Americans, with potentially twice that number undiagnosed.
Subscribe, share with friends, and join the conversation by emailing your questions to boomerandjenexer@gmail.com.
email: boomerandgenxer@gmail.com
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:06):
hey, hey, hey.
Good day everyone, and welcometo a boomer and gen x are
walking to a bar where you, asour listener, will hear some wit
and wisdom, some smart asseryand a mother and daughter
questioning.
Are we even related?
And so we welcome you.
Today we have bobby is myco-host and bobby we have a
(00:29):
guest in the studio today, don'twe?
Speaker 2 (00:31):
we do and we are actually in the studio.
Speaker 1 (00:34):
I can't believe it, we are back to the rabbit hole
studio and we are so happy to beface to face.
I'm not sure if that's a goodthing or a bad thing uh, because
we seem to get into moretrouble when we are at the
rabbit hole, but nevertheless,we do have a guest in the studio
.
Speaker 2 (00:52):
That's right.
See, you went off the scriptand now here we are.
Speaker 1 (00:55):
There we are, and so who is our guest in the studio
today?
Do I recognize him?
Yes, I do, it is my grandsonDustin.
Good day, dustin.
Speaker 3 (01:07):
Thank you, it's good to be here.
Speaker 1 (01:09):
Good to be here, and so do you know why you're here.
Do you know why we asked you tocome to the studio today?
Speaker 3 (01:14):
Well, I've been told I have a radio voice.
Speaker 1 (01:17):
Oh, he does have a good radio voice, doesn't he?
Can you do a commercial for us?
Like something really cool?
Come, come on, do something notin my wheelhouse.
Speaker 3 (01:27):
Cool's not in your wheelhouse.
Speaker 1 (01:29):
Well, the reason that he is here today is because our
topic today is going to be um,gluten-free and celiac disease,
and the reason that we are goingto talk about that is because I
have it, and so does mygrandson, dustin, and we are
(01:49):
testing some additional familymembers to see if they have it
also, and so we just wanted totalk about it because there's a
lot of what do I want to say?
There's a lot of diseases outthere that people don't even
know that they have.
They don't know what thesymptoms are, diseases out there
that people don't even knowthat they have.
They don't know what thesymptoms are.
And we're just going to talk alittle bit about how we figured
this out, and I'm going to startfirst Dustin and then I'm going
(02:12):
to kind of go over to you,because for years it just seemed
so weird that I couldn't eat abig meal.
Did you find that?
Speaker 3 (02:22):
No, I didn't.
I think my presentation was alittle different.
Speaker 1 (02:27):
Yours was a little different, so I couldn't eat a
big meal.
And so people would go oh youknow why aren't you eating very
much?
And it was because I justcouldn't, my stomach just
wouldn't take it, and so I couldonly do little bitty meals at a
time, could only do littlebitty meals at a time, and um,
(02:50):
and so I had that for years andyears and years and didn't
really even think that it hadanything to do with gluten.
And then one day I went to theum disease stomach disease place
to get tested.
I don't know what it's called.
What is it called?
I don't even remember the um thedigestive disease center, yeah,
yeah yeah, and so what happenedwas was I got sick when I was
(03:11):
out of the country and I cameback and they did some tests on
me and found out that I haveceliac disease.
And so what does that meanexactly?
Um, it has to do with gluten,right, dustin?
Speaker 3 (03:26):
Yes, yes, it does.
Speaker 1 (03:27):
So tell us about that a little bit.
So what effects does gluten,and first of all, what is gluten
?
And secondly, what does glutendo to us?
Speaker 3 (03:39):
Well, so I'm not really an authority on the
subject and I'm relatively newto this whole world.
But to answer your firstquestion, gluten is a protein
found in wheat, rye and barley.
What was your other question?
Speaker 1 (03:52):
my other question is what does it do to you, and is
it the same for all people?
Speaker 3 (03:56):
so what it can do to you.
It's a whole host of things.
If you have celiac disease,there's actually over 200
recognized symptoms and theserange everything from digestive
issues like abdominal pain,irregular bowel habits, fatigue
and low energy.
You can have nutritionaldeficiencies due to the damage
that it causes to your digestivetract and the V-line in your
(04:18):
intestine all the way up to it'sactually really common to have.
Dermatitis is common, evenjoint pain and secondary
autoimmune disease.
Well, there's a highcomorbidity.
Speaker 1 (04:28):
So there's a lot of different things that that
gluten can affect, and I justwant to preface this by saying
we are not doctors, we are notscientists, we are just talking
about how it affects us asindividuals.
Right, and I like to talk aboutit just because I didn't know.
For years, I didn't know thatthis was my problem, other than
(04:51):
just being weird.
Speaker 2 (04:52):
I thought, you know, I thought it was just quirky,
and so, and I will interjecthere and say I do not have
celiac and I eat plenty of fullmeals.
So I'm going to be kind ofquiet on this.
But I have had to research alittle bit because my youngest
is having issues.
But it also deals.
You know, the glutenintolerance can really mess with
(05:13):
your mood too.
Speaker 1 (05:15):
Oh, okay.
Speaker 2 (05:16):
So things like anxiety, depression,
irritability things like that itcan affect those too.
Speaker 1 (05:22):
I think what I noticed the most was probably
the stomach pain after eatingand the constipation I mean we
don't want to talk aboutconstipation, but let's face it,
that's a symptom, and so thatwas something that I guess.
I was just kind of shocked whenI found out about it.
I never in a million yearswould have thought that it was
(05:43):
celiac disease.
So how did you find out, dustin?
What?
What made you go get tested?
Speaker 3 (05:50):
Well, it was kind of a long journey for me.
It started out as um it didn'teven start out really as
digestive issues.
I wound up with severe fatigue,pain, anemia, um, I wound up
with uh, neutropenia andleukopenia, which is low white
cell count, as a matter of fact,and it wasn't until much later
(06:11):
that you recommended actuallygetting tested that I started
recognizing the potential forthis.
Otherwise, up until that pointand I should probably mention
this was four or five years ofextreme fatigue that the thought
never occurred to me that itcould be a GI or an autoimmune
disease.
Speaker 1 (06:32):
And so you went in and got tested.
Speaker 3 (06:34):
I did yep, I got the standard TTG and IgG test, which
is just a blood test thatmeasures antibodies that break
down that enzyme and canactually destroy your.
It's a factor in thedestruction of the v-line, your
intestine, as well.
So having that, having thoseantibodies, is a significant
indicator so celiac disease.
Speaker 1 (06:54):
I just want to point out real quick you notice that
dustin's a lot more soft-spokenthan than bobby and I.
Bobby and I are prettyobnoxious.
Dustin is pretty soft-spokenand very professional, but, um,
one of the things that I foundout and I'm not going to be
scientific about how I Icharacterize this or how I
(07:15):
describe this is that there areridges in your stomach lining or
in your digestive tract, andthose ridges actually are what
catches your nutrients in yourbody.
When you have celiac diseasecorrect me if I'm wrong.
If they explain this to youthis way is, when you have
(07:35):
celiac disease, what happens isthat kind of flattens out Kind
of, and so you're not collectingthe nutrients that you think
you're taking into your body.
Speaker 3 (07:47):
Right.
Speaker 1 (07:47):
So whatever foods you're eating, whatever pills
you may be taking, supplementsthat you may be taking, they're
just kind of doing nothingbecause they can't be absorbed
into your system.
Is that how you understood it?
Speaker 3 (08:01):
Yeah, so what you're talking about is V-Li right?
You understood it.
Yeah, so what you're talkingabout is V-Li right?
They're tiny little,microscopic sort of finger-like
organisms that help to absorbthose nutrients and help to
break them down.
And yeah, one of the mostdestructive side effects of
celiac disease is the bluntingor the destruction of those V-Li
.
Speaker 1 (08:21):
So what can result from that?
I mean, other than not gettingthe nutrients that you need.
What else can happen to yourbody?
Speaker 3 (08:29):
Yes, so secondary autoimmune diseases are pretty
common Things like Crohn'sdisease, things like irritable
bowel syndrome but it canactually extend so severely.
It increases our risk ofstomach cancer, of colon cancer
and even of pancreatic cancerpotentially, if it goes
untreated for an extended periodof time.
Speaker 1 (08:49):
And one of the reasons why I so wanted to talk
about this today is because,when we talk about stomach
cancer or digestive cancer,there's so many chemicals and
products that are put into ourfoods today that it's just very
difficult to avoid cancer.
Oh, absolutely the cancer rateis just sky high and it has to
(09:09):
do with a lot of the chemicalsand preservatives and sweeteners
and things like that that areput into our foods.
So if that's sitting in oursystem and we have celiac now
we're kind of doubling down yeah, we're double screwed
effectively.
Yeah, yeah, absolutely and soour potential for cancer is even
(09:33):
higher.
Yes, and I've said this beforeon the show, I'm brecca positive
and so I have the cancer geneanyway, yeah, and so I have to
be careful.
And that passes on.
That passes on to my kids.
My daughter has the gene, notbobby.
She hasn't been tested.
Dustin hasn't been tested forthe gene.
(09:53):
He, he needs to be tested.
Um, and it does pass on.
But the reason that we'rebringing this up today is
because, you know, I went yearsand I mean, look how old I am,
I'm the boomer, right?
Speaker 2 (10:05):
yeah, okay, bobby, I saw you laughing down there, no
face, so okay, so get this.
You got like two strikesagainst you, mom, because you're
more likely to have I'm readingthis you're more likely to have
celiac disease if you're whiteand female.
Speaker 1 (10:22):
Okay, I'm like'm like those are two of the two of the
bad things.
I'm white, I'm crazy, Okay.
And plus, now you think aboutit, I have the cancer gene, you
know the BRCA positive.
I have that gene.
Now I'm triple threat, right.
And so I guess the reason Iwanted to talk about it is
(10:44):
because, for years and years asold as I am and I'm not going to
say how old I am, but I'm oldBobby has said I'm older than
the dinosaurs.
Speaker 2 (10:53):
You're a boomer.
Speaker 3 (10:54):
I'm a boomer.
Speaker 1 (10:55):
I mean, what else is there to say?
I've gone all those years notknowing and just being in pain
all the time.
And so I guess what I would sayis Dustin, and did you
experience this?
Like I would eat a meal and Icould double over in pain, I
mean within minutes of eatingany type of gluten.
Speaker 3 (11:16):
That sounds intense.
It's intense, yeah.
Speaker 1 (11:19):
I would double over and I just thought it was me.
I just thought, oh, I ate toomuch, or that's why I'm eating
these little bitty meals isbecause I can't eat that much
and and it hurts me so bad.
And I want other people to knowwhat they're eating.
I want them to know how thisstuff affects them.
(11:39):
I want I want them to know thatthey're eating.
I want them to know how thisstuff affects them.
I want I want them to know thatyou know the chemicals in in
product food.
Packaged food, um is really notgood for you and that that
doesn't help you either.
But some of these symptoms, ifyou have them, go get it checked
.
It's worth getting checked andsince the cancer rate is so high
(12:03):
, if we can eliminate that orreduce it, why wouldn't we?
I mean, wouldn't you agree?
Speaker 3 (12:10):
Yeah, yeah, especially you're part about
getting tested.
You know current estimate.
So the current diagnosedpopulation of celiacs in america
is roughly one in a hundred.
Speaker 2 (12:23):
right, it's about it's about one percent of the
population.
Speaker 3 (12:25):
That's a lot, but the actual educated estimations are
that that that number is likelycloser to two or potentially
even three percent.
There are a lot of people whohave celiac disease for their
lives and are are asymptomatic,and so they go through their
lives and are asymptomatic andso they go through their lives
damaging their intestines,increasing their risk of things
(12:45):
like stomach cancer and coloncancer and all these things.
It can even cause eye issues.
It can cause oculardegeneration, if I remember
correctly.
So there's a whole host ofmaladies that accompany this.
But yeah, absolutely get tested, because the those who are far
more educated on it than mestate that it's in all
likelihood closer to two and ahundred people have it which
(13:07):
means that you know only 50 aregetting diagnosed yeah, and, and
so you mentioned ocular.
Speaker 1 (13:13):
So I have ocular migraines and if anybody's ever
had one, they know how terriblethey are.
And what happens is is it'salmost like a rippling across
your eyes.
It's not floaters, it's like arippling across your eyes and I
can't read.
I can't read anything becauseof the rippling, and when I get
a get one of those, it's reallytough, and I didn't realize that
(13:34):
it was associated with thegluten.
The other thing is is I havefibromyalgia Now.
Fibromyalgia is a hereditarydisease.
Bobby has it, my other daughterhas it, I don't know who else
has it.
Speaker 3 (13:46):
I thought I had it for a long time.
Speaker 1 (13:48):
And fibromyalgia is kind of a phenomenon because
they really don't know whattruly causes it and how to fix
it.
What I have found is, if I dostay off of gluten, my
fibromyalgia is so much betterand I and, um, anybody who has
(14:08):
fibromyalgia.
Let me just explain what thatis.
You know people go oh, it'sjust a fake disease.
I said that forever.
Fibromyalgia the way I describeit is if you were in a really,
really bad car wreck but didn'tbreak any bones and the next
morning you woke up and you werein so much pain just from being
jolted around in a really badcar wreck.
(14:29):
That's what fibromyalgia feelslike and we have it every single
day, every day, and sometimesit's better, sometimes it's
worse.
But I will tell you that glutenhas really affected my
fibromyalgia.
Now, one thing that Dustin hastaught me through this whole
process is that just becausesomebody says we have a gluten
(14:51):
free menu does not mean thatthey have a celiac safe menu,
correct.
Speaker 3 (14:54):
Dustin, that is correct.
Speaker 1 (14:56):
Let's talk about what the difference is.
Speaker 3 (14:57):
Yeah, yeah.
So the thing with celiacdisease I kind of think of it a
lot.
I think of it as like a nutallergy.
Right, you think of a severenut allergy and you think, okay,
there can be dust in the air,there can be potential
cross-contamination anywhere inthe kitchen.
You have to effectively applythe same logic to gluten,
(15:18):
because it's a protein andbecause it's so sticky, it's not
a bacteria, it's not a virus,it's not easy to wash away and
it clings to porous surfaces.
Things like cutting boards,things like ceramic and plastic
utensils can all harbor thisgluten and can actually spread
to your food, even if you aren'tconsuming a dish with gluten in
it.
Speaker 1 (15:37):
Okay.
And so when somebody says, hey,we have a gluten-free menu,
there may not be gluten in theactual food, but if they
prepared it around somethingthat was gluten sandwiches,
breads, pastas, that sort ofthing that's where we can run
into problems.
Now, I'm not as sensitive asyou are.
(15:59):
And that may have to do with myage, right, because I'm really
kind of, I want to say, over it.
Now I'm not really over it, butyou know I've kind of gotten
used to it.
But with Celiac Safe, thatmeans they have taken all the
steps necessary to isolate thatparticular food so that you
don't have that crosscontamination.
And I think that's importantfor people to know, because some
(16:23):
people think we're just babiesabout it.
You know they're gluten-free,they're just being a crybaby.
It's just another allergy, likethe peanut allergy.
It causes us pain and whensomebody says, hey, you know I'm
gluten intolerant or I haveceliac, you know kind of have a
little empathy for them on that.
Speaker 3 (16:42):
And there's a distinction.
It's important to note.
There's a big distinctionbetween a gluten intolerance and
celiac disease.
Right, celiac disease is anautoimmune disease.
Gluten intolerance is similarto a lactose lactose intolerance
, right?
So gluten or, excuse me, glutenintolerance?
Yes, gluten is a.
It's an inflammatory agent.
Regardless of whether or notyou have celiac disease, it can
(17:05):
cause inflammation in your body.
It can cause potential jointpain.
It can exacerbate underlyingconditions, regardless of the
autoimmune disease, but yoursensitivity to it is not nearly
as extreme as somebody withceliac disease.
Speaker 1 (17:21):
Okay, that's good to know, Good to know.
So, anyway, bobby, what do youhave to add?
Do you have any of thesesymptoms?
You know, since we have them,do you have them?
Do any of your kids have them?
Speaker 2 (17:35):
My youngest is currently going through testing
for it right now, just becauseof the symptoms that she is
having the pain, the not able toeat certain foods, things like
that.
So we're just kind of ruling abunch of things out and since
you guys have it, there's ahigher chance that she's got it
and you know you have a higherchance if a relative has it.
(17:56):
Have a higher chance of arelative has it.
Do you ever sit and think likewhat relative of yours would
have had it and they never wouldhave known because there wasn't
the research back then?
Wow, what they would have hadto go through.
Because you got to think.
I know, especially like withyour parents and things like
that they were poorer than poor,they didn't have the money to
go out and you know, get to get,not only get tested, but get
(18:20):
certain foods.
You ate what you were given,right, you know if that caused
you stomach pain and stuff tough, you know you got it.
You got a tummy ache, go walkit off right.
And how many people before youknow in our family line would
have suffered from things likethat and never have known that
it was an actual thing?
Speaker 1 (18:39):
what a great point.
Uh, because we were dirt poorand if we had allergies, you
know, it was like, well, I haveallergy to hay, well, we're
gonna battle hay today.
So too bad, so sad, you know,or um, we were just.
I always said we were too poorto have allergies yeah we had to
eat and we, you know it was notlike we had an overabundance of
(19:00):
food at our house.
It's interesting.
Speaker 3 (19:04):
Sorry, go ahead oh no , I was just going to say, even
if you did, it wouldn't havemattered.
In the 70s and 80s, celiacdisease was poorly understood.
One of the standard diets was,um, if I'm right, it's called
the banana diet.
It's basically a low starchdiet, because that was as close
as medical professionals couldget to understanding what the
underlying cause was okay, wedidn't understand the mechanism
(19:24):
behind the disease, yeah, and sowe didn't understand how to
treat it well it.
Speaker 1 (19:30):
You know bobby brought up how many of your
relatives you think.
My sister uh was in really badhealth before she died Right,
and she had breast cancer andshe had a brain tumor from
cancer and she was in a nursinghome for a period of time and
they had her on her back andthat's the worst thing you can
(19:51):
do for fibromyalgia.
And she used to just moan andshe was kind of incoherent a lot
, couldn't communicate a lot,but she moaned a lot.
And it wasn't until recentlywhen we started talking about
this celiac and how it affectedour fibromyalgia and I thought,
(20:12):
oh my goodness.
I told both my girls.
I said I think my sister hadfibromyalgia because of the
moaning laying on her back and Isaid, if I'm ever bedridden,
please, for the love of God, youknow, move me around.
I don't care what you do, butmove me around because it's so
painful.
But you know, even, dr Domain,when we were in Georgia here
(20:34):
recently I had a week's worth ofvery, very horrible time period
with the gluten affecting myfibromyalgia.
I was in so much incrediblepain and it was because I wasn't
watching what I was eating andI knew it the minute it happened
.
And I told him that, and ofcourse, he gets right on it.
(20:55):
He wants me to, you know, payvery close attention to that on
it.
He wants me to, you know, payvery close attention to that, um
, and so I'm very thankful thatI have someone you know, you
guys that all know about it andcan help me with that.
So what are there any otherwords of advice that you'd like
to give our listeners?
This was kind of a reallyserious topic today, I think,
and it was.
(21:16):
It was a good one, though,because I really want people to
know that, if you're havingthose symptoms, get it checked.
What words of advice would youhave for them, dustin?
Speaker 3 (21:25):
Well, I guess I'd like to.
I want to clarify two things incase any of the listeners do
have celiac disease.
Number one don't despair aboutthe increased potential rates of
things like stomach cancer andGI cancer.
Studies have shown that thatlargely applies to individuals
who aren't diagnosed until theirlate 40s to early 50s and after
(21:45):
five years of being completelygluten-free and those V-Li
healing in your intestinerepairing itself, those numbers
go way back down, much closer tothe standard risk.
Number two I wanted to clarifyon that kitchen note so I looked
it up while you were talkingand the daily limit for somebody
with celiac disease for overallgluten intake is equivalent to
(22:09):
one 350th of a piece of bread, apiece of standard white bread.
Speaker 1 (22:14):
Wow.
Speaker 3 (22:15):
Which is insane.
Speaker 1 (22:16):
Wow, that's crazy.
Yeah, it is crazy, that's crazyand that applies to spices, that
applies to everything yeah, andand the last thing I just want
to say is, if you do have celiac, this is how serious it is.
If we do get exposed to glutenand and I'm not as good as as
dustin, is dustin's really goodabout it?
(22:36):
I am not as good.
Um, I feel like I've had a goodrun and but, um, once we get
exposed to it again, it can takesix months to a year for that
one exposure to get out of oursystem yeah, for me at least,
even just the brain fog, itlasts a week or two.
Speaker 3 (22:58):
The pain and fatigue last five to seven days minimum.
Speaker 1 (23:04):
So I would encourage people to just read up on it.
Speaker 3 (23:07):
Absolutely.
Speaker 1 (23:08):
If you have the fatigue, if you have the pain,
if you have the digestive issues, if you're having the brain fog
, the memory issues, any of thevision issues, it's just kind of
worth it to go in and have thattest done it and eliminate it
For the love of God, do not gogluten free until you have this
test.
Speaker 3 (23:28):
I know numerous individuals people in my
community who went gluten freeas an attempt to understand,
right to figure out a celiacdisease?
they would.
They would omit it from theirdiet for an extended period of
time three, four, six, sometimeseven 12 months and then they
would.
They would omit it from theirdiet for an extended period of
time three, four, six, sometimeseven 12 months and then they
would start feeling better andthey decide to get tested.
(23:48):
But you have to.
You have to be presentlyconsuming gluten for that
antibody test.
So if you think you have it,please don't stop consuming
gluten until you have that test,because healing and going back
is so much worse.
Speaker 1 (23:58):
Yeah, it is, it is.
And yeah, I guess I don't.
I don't want to add to thatother than you know.
Just if you feel like, if youmight have it, if you've, you
know, just just go in and getthe test done.
Speaker 3 (24:12):
It's a simple blood test.
If you test positive, the goldstandard is an endoscopy.
Speaker 1 (24:16):
Right.
But yeah, I mean standard is anendoscopy, right, um, but yeah,
I mean to get the blood test, ifnothing else, yeah.
So I be honest, I think that'sabout all we have for today on
that subject.
We really appreciate you beinghere with us in the rabbit hole
studio and I'm so happy thatwe're back.
I can see bobby's smiling facedown at the other end of the
studio yay, yay, and I sound alot better.
(24:38):
Now, too, you do sound a lotbetter.
I won't say you look better,but you do sound better.
What do?
Speaker 2 (24:47):
you think, bob?
Yeah, I think that's uh all theinformative insanity that we
have for today.
Um, but we do appreciate youjoining us here.
Finally, back at the rabbithole studio, be sure to follow
us and like us and share us withyour friends.
And if you don't really like us, hey, share us with your
enemies.
(25:07):
We'll we'll take them too.
Um, hey, if you have a topicyou want to talk about, if you
got constructive criticism,anything like that, uh, our
email is boomerandjenexer atgmailcom.
You can find us on Facebook atA Boomer and a Gen Xer Walk Into
a Bar, the official podcastpage.
If you have hate mail, well,you know where you can put that.
(25:28):
So, until next week, I'm BobbiJoy and I'm Jane Burke and
you're stuck with us, peace out.
Later.
hey, hey, hey.
Good day everyone, and welcometo a boomer and gen x are
walking to a bar where you, asour listener, will hear some wit
and wisdom, some smart asseryand a mother and daughter
questioning.
Are we even related?
And so we welcome you.
Today we have bobby is myco-host and bobby we have a
(00:29):
guest in the studio today, don'twe?
Speaker 2 (00:31):
we do and we are actually in the studio.
Speaker 1 (00:34):
I can't believe it, we are back to the rabbit hole
studio and we are so happy to beface to face.
I'm not sure if that's a goodthing or a bad thing uh, because
we seem to get into moretrouble when we are at the
rabbit hole, but nevertheless,we do have a guest in the studio
.
Speaker 2 (00:52):
That's right.
See, you went off the scriptand now here we are.
Speaker 1 (00:55):
There we are, and so who is our guest in the studio
today?
Do I recognize him?
Yes, I do, it is my grandsonDustin.
Good day, dustin.
Speaker 3 (01:07):
Thank you, it's good to be here.
Speaker 1 (01:09):
Good to be here, and so do you know why you're here.
Do you know why we asked you tocome to the studio today?
Speaker 3 (01:14):
Well, I've been told I have a radio voice.
Speaker 1 (01:17):
Oh, he does have a good radio voice, doesn't he?
Can you do a commercial for us?
Like something really cool?
Come, come on, do something notin my wheelhouse.
Speaker 3 (01:27):
Cool's not in your wheelhouse.
Speaker 1 (01:29):
Well, the reason that he is here today is because our
topic today is going to be um,gluten-free and celiac disease,
and the reason that we are goingto talk about that is because I
have it, and so does mygrandson, dustin, and we are
(01:49):
testing some additional familymembers to see if they have it
also, and so we just wanted totalk about it because there's a
lot of what do I want to say?
There's a lot of diseases outthere that people don't even
know that they have.
They don't know what thesymptoms are, diseases out there
that people don't even knowthat they have.
They don't know what thesymptoms are.
And we're just going to talk alittle bit about how we figured
this out, and I'm going to startfirst Dustin and then I'm going
(02:12):
to kind of go over to you,because for years it just seemed
so weird that I couldn't eat abig meal.
Did you find that?
Speaker 3 (02:22):
No, I didn't.
I think my presentation was alittle different.
Speaker 1 (02:27):
Yours was a little different, so I couldn't eat a
big meal.
And so people would go oh youknow why aren't you eating very
much?
And it was because I justcouldn't, my stomach just
wouldn't take it, and so I couldonly do little bitty meals at a
time, could only do littlebitty meals at a time, and um,
(02:50):
and so I had that for years andyears and years and didn't
really even think that it hadanything to do with gluten.
And then one day I went to theum disease stomach disease place
to get tested.
I don't know what it's called.
What is it called?
I don't even remember the um thedigestive disease center, yeah,
yeah yeah, and so what happenedwas was I got sick when I was
(03:11):
out of the country and I cameback and they did some tests on
me and found out that I haveceliac disease.
And so what does that meanexactly?
Um, it has to do with gluten,right, dustin?
Speaker 3 (03:26):
Yes, yes, it does.
Speaker 1 (03:27):
So tell us about that a little bit.
So what effects does gluten,and first of all, what is gluten
?
And secondly, what does glutendo to us?
Speaker 3 (03:39):
Well, so I'm not really an authority on the
subject and I'm relatively newto this whole world.
But to answer your firstquestion, gluten is a protein
found in wheat, rye and barley.
What was your other question?
Speaker 1 (03:52):
my other question is what does it do to you, and is
it the same for all people?
Speaker 3 (03:56):
so what it can do to you.
It's a whole host of things.
If you have celiac disease,there's actually over 200
recognized symptoms and theserange everything from digestive
issues like abdominal pain,irregular bowel habits, fatigue
and low energy.
You can have nutritionaldeficiencies due to the damage
that it causes to your digestivetract and the V-line in your
(04:18):
intestine all the way up to it'sactually really common to have.
Dermatitis is common, evenjoint pain and secondary
autoimmune disease.
Well, there's a highcomorbidity.
Speaker 1 (04:28):
So there's a lot of different things that that
gluten can affect, and I justwant to preface this by saying
we are not doctors, we are notscientists, we are just talking
about how it affects us asindividuals.
Right, and I like to talk aboutit just because I didn't know.
For years, I didn't know thatthis was my problem, other than
(04:51):
just being weird.
Speaker 2 (04:52):
I thought, you know, I thought it was just quirky,
and so, and I will interjecthere and say I do not have
celiac and I eat plenty of fullmeals.
So I'm going to be kind ofquiet on this.
But I have had to research alittle bit because my youngest
is having issues.
But it also deals.
You know, the glutenintolerance can really mess with
(05:13):
your mood too.
Speaker 1 (05:15):
Oh, okay.
Speaker 2 (05:16):
So things like anxiety, depression,
irritability things like that itcan affect those too.
Speaker 1 (05:22):
I think what I noticed the most was probably
the stomach pain after eatingand the constipation I mean we
don't want to talk aboutconstipation, but let's face it,
that's a symptom, and so thatwas something that I guess.
I was just kind of shocked whenI found out about it.
I never in a million yearswould have thought that it was
(05:43):
celiac disease.
So how did you find out, dustin?
What?
What made you go get tested?
Speaker 3 (05:50):
Well, it was kind of a long journey for me.
It started out as um it didn'teven start out really as
digestive issues.
I wound up with severe fatigue,pain, anemia, um, I wound up
with uh, neutropenia andleukopenia, which is low white
cell count, as a matter of fact,and it wasn't until much later
(06:11):
that you recommended actuallygetting tested that I started
recognizing the potential forthis.
Otherwise, up until that pointand I should probably mention
this was four or five years ofextreme fatigue that the thought
never occurred to me that itcould be a GI or an autoimmune
disease.
Speaker 1 (06:32):
And so you went in and got tested.
Speaker 3 (06:34):
I did yep, I got the standard TTG and IgG test, which
is just a blood test thatmeasures antibodies that break
down that enzyme and canactually destroy your.
It's a factor in thedestruction of the v-line, your
intestine, as well.
So having that, having thoseantibodies, is a significant
indicator so celiac disease.
Speaker 1 (06:54):
I just want to point out real quick you notice that
dustin's a lot more soft-spokenthan than bobby and I.
Bobby and I are prettyobnoxious.
Dustin is pretty soft-spokenand very professional, but, um,
one of the things that I foundout and I'm not going to be
scientific about how I Icharacterize this or how I
(07:15):
describe this is that there areridges in your stomach lining or
in your digestive tract, andthose ridges actually are what
catches your nutrients in yourbody.
When you have celiac diseasecorrect me if I'm wrong.
If they explain this to youthis way is, when you have
(07:35):
celiac disease, what happens isthat kind of flattens out Kind
of, and so you're not collectingthe nutrients that you think
you're taking into your body.
Speaker 3 (07:47):
Right.
Speaker 1 (07:47):
So whatever foods you're eating, whatever pills
you may be taking, supplementsthat you may be taking, they're
just kind of doing nothingbecause they can't be absorbed
into your system.
Is that how you understood it?
Speaker 3 (08:01):
Yeah, so what you're talking about is V-Li right?
You understood it.
Yeah, so what you're talkingabout is V-Li right?
They're tiny little,microscopic sort of finger-like
organisms that help to absorbthose nutrients and help to
break them down.
And yeah, one of the mostdestructive side effects of
celiac disease is the bluntingor the destruction of those V-Li
.
Speaker 1 (08:21):
So what can result from that?
I mean, other than not gettingthe nutrients that you need.
What else can happen to yourbody?
Speaker 3 (08:29):
Yes, so secondary autoimmune diseases are pretty
common Things like Crohn'sdisease, things like irritable
bowel syndrome but it canactually extend so severely.
It increases our risk ofstomach cancer, of colon cancer
and even of pancreatic cancerpotentially, if it goes
untreated for an extended periodof time.
Speaker 1 (08:49):
And one of the reasons why I so wanted to talk
about this today is because,when we talk about stomach
cancer or digestive cancer,there's so many chemicals and
products that are put into ourfoods today that it's just very
difficult to avoid cancer.
Oh, absolutely the cancer rateis just sky high and it has to
(09:09):
do with a lot of the chemicalsand preservatives and sweeteners
and things like that that areput into our foods.
So if that's sitting in oursystem and we have celiac now
we're kind of doubling down yeah, we're double screwed
effectively.
Yeah, yeah, absolutely and soour potential for cancer is even
(09:33):
higher.
Yes, and I've said this beforeon the show, I'm brecca positive
and so I have the cancer geneanyway, yeah, and so I have to
be careful.
And that passes on.
That passes on to my kids.
My daughter has the gene, notbobby.
She hasn't been tested.
Dustin hasn't been tested forthe gene.
(09:53):
He, he needs to be tested.
Um, and it does pass on.
But the reason that we'rebringing this up today is
because, you know, I went yearsand I mean, look how old I am,
I'm the boomer, right?
Speaker 2 (10:05):
yeah, okay, bobby, I saw you laughing down there, no
face, so okay, so get this.
You got like two strikesagainst you, mom, because you're
more likely to have I'm readingthis you're more likely to have
celiac disease if you're whiteand female.
Speaker 1 (10:22):
Okay, I'm like'm like those are two of the two of the
bad things.
I'm white, I'm crazy, Okay.
And plus, now you think aboutit, I have the cancer gene, you
know the BRCA positive.
I have that gene.
Now I'm triple threat, right.
And so I guess the reason Iwanted to talk about it is
(10:44):
because, for years and years asold as I am and I'm not going to
say how old I am, but I'm oldBobby has said I'm older than
the dinosaurs.
Speaker 2 (10:53):
You're a boomer.
Speaker 3 (10:54):
I'm a boomer.
Speaker 1 (10:55):
I mean, what else is there to say?
I've gone all those years notknowing and just being in pain
all the time.
And so I guess what I would sayis Dustin, and did you
experience this?
Like I would eat a meal and Icould double over in pain, I
mean within minutes of eatingany type of gluten.
Speaker 3 (11:16):
That sounds intense.
It's intense, yeah.
Speaker 1 (11:19):
I would double over and I just thought it was me.
I just thought, oh, I ate toomuch, or that's why I'm eating
these little bitty meals isbecause I can't eat that much
and and it hurts me so bad.
And I want other people to knowwhat they're eating.
I want them to know how thisstuff affects them.
(11:39):
I want I want them to know thatthey're eating.
I want them to know how thisstuff affects them.
I want I want them to know thatyou know the chemicals in in
product food.
Packaged food, um is really notgood for you and that that
doesn't help you either.
But some of these symptoms, ifyou have them, go get it checked
.
It's worth getting checked andsince the cancer rate is so high
(12:03):
, if we can eliminate that orreduce it, why wouldn't we?
I mean, wouldn't you agree?
Speaker 3 (12:10):
Yeah, yeah, especially you're part about
getting tested.
You know current estimate.
So the current diagnosedpopulation of celiacs in america
is roughly one in a hundred.
Speaker 2 (12:23):
right, it's about it's about one percent of the
population.
Speaker 3 (12:25):
That's a lot, but the actual educated estimations are
that that that number is likelycloser to two or potentially
even three percent.
There are a lot of people whohave celiac disease for their
lives and are are asymptomatic,and so they go through their
lives and are asymptomatic andso they go through their lives
damaging their intestines,increasing their risk of things
(12:45):
like stomach cancer and coloncancer and all these things.
It can even cause eye issues.
It can cause oculardegeneration, if I remember
correctly.
So there's a whole host ofmaladies that accompany this.
But yeah, absolutely get tested, because the those who are far
more educated on it than mestate that it's in all
likelihood closer to two and ahundred people have it which
(13:07):
means that you know only 50 aregetting diagnosed yeah, and, and
so you mentioned ocular.
Speaker 1 (13:13):
So I have ocular migraines and if anybody's ever
had one, they know how terriblethey are.
And what happens is is it'salmost like a rippling across
your eyes.
It's not floaters, it's like arippling across your eyes and I
can't read.
I can't read anything becauseof the rippling, and when I get
a get one of those, it's reallytough, and I didn't realize that
(13:34):
it was associated with thegluten.
The other thing is is I havefibromyalgia Now.
Fibromyalgia is a hereditarydisease.
Bobby has it, my other daughterhas it, I don't know who else
has it.
Speaker 3 (13:46):
I thought I had it for a long time.
Speaker 1 (13:48):
And fibromyalgia is kind of a phenomenon because
they really don't know whattruly causes it and how to fix
it.
What I have found is, if I dostay off of gluten, my
fibromyalgia is so much betterand I and, um, anybody who has
(14:08):
fibromyalgia.
Let me just explain what thatis.
You know people go oh, it'sjust a fake disease.
I said that forever.
Fibromyalgia the way I describeit is if you were in a really,
really bad car wreck but didn'tbreak any bones and the next
morning you woke up and you werein so much pain just from being
jolted around in a really badcar wreck.
(14:29):
That's what fibromyalgia feelslike and we have it every single
day, every day, and sometimesit's better, sometimes it's
worse.
But I will tell you that glutenhas really affected my
fibromyalgia.
Now, one thing that Dustin hastaught me through this whole
process is that just becausesomebody says we have a gluten
(14:51):
free menu does not mean thatthey have a celiac safe menu,
correct.
Speaker 3 (14:54):
Dustin, that is correct.
Speaker 1 (14:56):
Let's talk about what the difference is.
Speaker 3 (14:57):
Yeah, yeah.
So the thing with celiacdisease I kind of think of it a
lot.
I think of it as like a nutallergy.
Right, you think of a severenut allergy and you think, okay,
there can be dust in the air,there can be potential
cross-contamination anywhere inthe kitchen.
You have to effectively applythe same logic to gluten,
(15:18):
because it's a protein andbecause it's so sticky, it's not
a bacteria, it's not a virus,it's not easy to wash away and
it clings to porous surfaces.
Things like cutting boards,things like ceramic and plastic
utensils can all harbor thisgluten and can actually spread
to your food, even if you aren'tconsuming a dish with gluten in
it.
Speaker 1 (15:37):
Okay.
And so when somebody says, hey,we have a gluten-free menu,
there may not be gluten in theactual food, but if they
prepared it around somethingthat was gluten sandwiches,
breads, pastas, that sort ofthing that's where we can run
into problems.
Now, I'm not as sensitive asyou are.
(15:59):
And that may have to do with myage, right, because I'm really
kind of, I want to say, over it.
Now I'm not really over it, butyou know I've kind of gotten
used to it.
But with Celiac Safe, thatmeans they have taken all the
steps necessary to isolate thatparticular food so that you
don't have that crosscontamination.
And I think that's importantfor people to know, because some
(16:23):
people think we're just babiesabout it.
You know they're gluten-free,they're just being a crybaby.
It's just another allergy, likethe peanut allergy.
It causes us pain and whensomebody says, hey, you know I'm
gluten intolerant or I haveceliac, you know kind of have a
little empathy for them on that.
Speaker 3 (16:42):
And there's a distinction.
It's important to note.
There's a big distinctionbetween a gluten intolerance and
celiac disease.
Right, celiac disease is anautoimmune disease.
Gluten intolerance is similarto a lactose lactose intolerance
, right?
So gluten or, excuse me, glutenintolerance?
Yes, gluten is a.
It's an inflammatory agent.
Regardless of whether or notyou have celiac disease, it can
(17:05):
cause inflammation in your body.
It can cause potential jointpain.
It can exacerbate underlyingconditions, regardless of the
autoimmune disease, but yoursensitivity to it is not nearly
as extreme as somebody withceliac disease.
Speaker 1 (17:21):
Okay, that's good to know, Good to know.
So, anyway, bobby, what do youhave to add?
Do you have any of thesesymptoms?
You know, since we have them,do you have them?
Do any of your kids have them?
Speaker 2 (17:35):
My youngest is currently going through testing
for it right now, just becauseof the symptoms that she is
having the pain, the not able toeat certain foods, things like
that.
So we're just kind of ruling abunch of things out and since
you guys have it, there's ahigher chance that she's got it
and you know you have a higherchance if a relative has it.
(17:56):
Have a higher chance of arelative has it.
Do you ever sit and think likewhat relative of yours would
have had it and they never wouldhave known because there wasn't
the research back then?
Wow, what they would have hadto go through.
Because you got to think.
I know, especially like withyour parents and things like
that they were poorer than poor,they didn't have the money to
go out and you know, get to get,not only get tested, but get
(18:20):
certain foods.
You ate what you were given,right, you know if that caused
you stomach pain and stuff tough, you know you got it.
You got a tummy ache, go walkit off right.
And how many people before youknow in our family line would
have suffered from things likethat and never have known that
it was an actual thing?
Speaker 1 (18:39):
what a great point.
Uh, because we were dirt poorand if we had allergies, you
know, it was like, well, I haveallergy to hay, well, we're
gonna battle hay today.
So too bad, so sad, you know,or um, we were just.
I always said we were too poorto have allergies yeah we had to
eat and we, you know it was notlike we had an overabundance of
(19:00):
food at our house.
It's interesting.
Speaker 3 (19:04):
Sorry, go ahead oh no , I was just going to say, even
if you did, it wouldn't havemattered.
In the 70s and 80s, celiacdisease was poorly understood.
One of the standard diets was,um, if I'm right, it's called
the banana diet.
It's basically a low starchdiet, because that was as close
as medical professionals couldget to understanding what the
underlying cause was okay, wedidn't understand the mechanism
(19:24):
behind the disease, yeah, and sowe didn't understand how to
treat it well it.
Speaker 1 (19:30):
You know bobby brought up how many of your
relatives you think.
My sister uh was in really badhealth before she died Right,
and she had breast cancer andshe had a brain tumor from
cancer and she was in a nursinghome for a period of time and
they had her on her back andthat's the worst thing you can
(19:51):
do for fibromyalgia.
And she used to just moan andshe was kind of incoherent a lot
, couldn't communicate a lot,but she moaned a lot.
And it wasn't until recentlywhen we started talking about
this celiac and how it affectedour fibromyalgia and I thought,
(20:12):
oh my goodness.
I told both my girls.
I said I think my sister hadfibromyalgia because of the
moaning laying on her back and Isaid, if I'm ever bedridden,
please, for the love of God, youknow, move me around.
I don't care what you do, butmove me around because it's so
painful.
But you know, even, dr Domain,when we were in Georgia here
(20:34):
recently I had a week's worth ofvery, very horrible time period
with the gluten affecting myfibromyalgia.
I was in so much incrediblepain and it was because I wasn't
watching what I was eating andI knew it the minute it happened
.
And I told him that, and ofcourse, he gets right on it.
(20:55):
He wants me to, you know, payvery close attention to that on
it.
He wants me to, you know, payvery close attention to that, um
, and so I'm very thankful thatI have someone you know, you
guys that all know about it andcan help me with that.
So what are there any otherwords of advice that you'd like
to give our listeners?
This was kind of a reallyserious topic today, I think,
and it was.
(21:16):
It was a good one, though,because I really want people to
know that, if you're havingthose symptoms, get it checked.
What words of advice would youhave for them, dustin?
Speaker 3 (21:25):
Well, I guess I'd like to.
I want to clarify two things incase any of the listeners do
have celiac disease.
Number one don't despair aboutthe increased potential rates of
things like stomach cancer andGI cancer.
Studies have shown that thatlargely applies to individuals
who aren't diagnosed until theirlate 40s to early 50s and after
(21:45):
five years of being completelygluten-free and those V-Li
healing in your intestinerepairing itself, those numbers
go way back down, much closer tothe standard risk.
Number two I wanted to clarifyon that kitchen note so I looked
it up while you were talkingand the daily limit for somebody
with celiac disease for overallgluten intake is equivalent to
(22:09):
one 350th of a piece of bread, apiece of standard white bread.
Speaker 1 (22:14):
Wow.
Speaker 3 (22:15):
Which is insane.
Speaker 1 (22:16):
Wow, that's crazy.
Yeah, it is crazy, that's crazyand that applies to spices, that
applies to everything yeah, andand the last thing I just want
to say is, if you do have celiac, this is how serious it is.
If we do get exposed to glutenand and I'm not as good as as
dustin, is dustin's really goodabout it?
(22:36):
I am not as good.
Um, I feel like I've had a goodrun and but, um, once we get
exposed to it again, it can takesix months to a year for that
one exposure to get out of oursystem yeah, for me at least,
even just the brain fog, itlasts a week or two.
Speaker 3 (22:58):
The pain and fatigue last five to seven days minimum.
Speaker 1 (23:04):
So I would encourage people to just read up on it.
Speaker 3 (23:07):
Absolutely.
Speaker 1 (23:08):
If you have the fatigue, if you have the pain,
if you have the digestive issues, if you're having the brain fog
, the memory issues, any of thevision issues, it's just kind of
worth it to go in and have thattest done it and eliminate it
For the love of God, do not gogluten free until you have this
test.
Speaker 3 (23:28):
I know numerous individuals people in my
community who went gluten freeas an attempt to understand,
right to figure out a celiacdisease?
they would.
They would omit it from theirdiet for an extended period of
time three, four, six, sometimeseven 12 months and then they
would.
They would omit it from theirdiet for an extended period of
time three, four, six, sometimeseven 12 months and then they
would start feeling better andthey decide to get tested.
(23:48):
But you have to.
You have to be presentlyconsuming gluten for that
antibody test.
So if you think you have it,please don't stop consuming
gluten until you have that test,because healing and going back
is so much worse.
Speaker 1 (23:58):
Yeah, it is, it is.
And yeah, I guess I don't.
I don't want to add to thatother than you know.
Just if you feel like, if youmight have it, if you've, you
know, just just go in and getthe test done.
Speaker 3 (24:12):
It's a simple blood test.
If you test positive, the goldstandard is an endoscopy.
Speaker 1 (24:16):
Right.
But yeah, I mean standard is anendoscopy, right, um, but yeah,
I mean to get the blood test, ifnothing else, yeah.
So I be honest, I think that'sabout all we have for today on
that subject.
We really appreciate you beinghere with us in the rabbit hole
studio and I'm so happy thatwe're back.
I can see bobby's smiling facedown at the other end of the
studio yay, yay, and I sound alot better.
(24:38):
Now, too, you do sound a lotbetter.
I won't say you look better,but you do sound better.
What do?
Speaker 2 (24:47):
you think, bob?
Yeah, I think that's uh all theinformative insanity that we
have for today.
Um, but we do appreciate youjoining us here.
Finally, back at the rabbithole studio, be sure to follow
us and like us and share us withyour friends.
And if you don't really like us, hey, share us with your
enemies.
(25:07):
We'll we'll take them too.
Um, hey, if you have a topicyou want to talk about, if you
got constructive criticism,anything like that, uh, our
email is boomerandjenexer atgmailcom.
You can find us on Facebook atA Boomer and a Gen Xer Walk Into
a Bar, the official podcastpage.
If you have hate mail, well,you know where you can put that.
(25:28):
So, until next week, I'm BobbiJoy and I'm Jane Burke and
you're stuck with us, peace out.
Later.
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