Transcript
ANNOUNCER: If you watch evening news, you can’t help notice the ads for medication designed to help people 
with serious digestive disorders. H2 blockers, to close the pathways that make stomach acid, drugs for healing 
damage to the esophagus. …. For bloating, for nausea. An increasing number of gastroenterologists now believe that 
many, if not all of these ailments are attributable to one cause. Celiac Disease. Once thought to be a rare, tropical ailment, 
Celiac Disease today is increasingly easy to diagnose. A breakthrough in just the last few years now has doctors 
thinking …. Rather than being rare, Celiac Disease is common. Extremely common. And that the path to recovery is 
fairly simple. Though by no means easy.

For the next hour, you will hear the life stories of a group of people with Celiac Disease and the pain, confusion, 
frustration and embarrassment they felt as the ailment touched every aspect of their lives. You may find some of these 
stories difficult to listen to. And you can understand why, considering the area of the body that’s primarily effected by 
Celiac Disease. But listen closely – to the discomfort and pain …. And to the joys and challenges of diagnoses and 
recovery … Because if doctors are right, there’s a good chance you’ll hear your own story, or the story of a friend or 
a loved one who’s currently suffering in the dark.

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KIMBERLY: I remember lying on the floor in my bedroom just starring up at the ceiling and wondering, "What is 
wrong with me?!  "Why is my body in constant turmoil and what is wrong and why can't anyone help me?" 
Wondering, “Is this what dying feels like?” I felt like I was dying.

MUSIC

CINDY: Celiac Disease

ALLAN: Celiac Disease

COBINA: C-E-L-I-A-C.

KATHY: Is also commonly called "Sprue." Or Celiac Sprue.

BILL: He called my wife and he says, "Your husband's got Celiac Disease." And she goes "What is that?!"

ALLAN: I'd never heard of it when I was first diagnosed.

LARRY: I had no idea what Celiac Disease was.

BILL: It's a gut disease.

ALLAN: An intestinal disorder

DESIREE: That causes the body to respond inappropriately when introduced to certain proteins.

Dr. KELLY: Largely components of wheat but also of barley and rye.

COBINA: Primarily wheat, rye, barley and in this country, oats.

Dr. KELLY: And their immune system attacks the food particles as though they were a virus.

CINDY: We have little villi in our small intestines. And they act kind of like shag carpet. And when you eat food, 
those little villi help to absorb nutrients from that food. And when you have Celiac Disease, those villi are damaged. 
They're flattened so rather than being like carpet, they're more like linoleum tile and all the nutrients you eat from your 
food just kind of slide on by.

DEAN: You cannot absorb anything

KIMBERLY: When the villi are flattened then the body is not able to absorb the essential vitamins and nutrients from 
the food that we eat.

COBINA: You may be eating a very excellent diet and still not be getting the benefit of that diet.

MUSIC SHIFTS IN TONE

KATHY: It can cause a multitude of symptoms (up inflection)

MELISSA: It can make some people throw up.

DEAN: Symptoms just like flu -- stomach flu

CINDY: Stomach aches for years and years and years including diarrhea, constipation and all that really fun stuff.

COBINA: Pain, gas, unpleasant reactions to almost everything

LARRY: You become dehydrated and you become very sick.

DESIREE: My bones were very, very weak and very painful. I couldn't hold a pen.

BILL: And I was losing weight tremendously.

KATHY: And the anemia oh my God, the anemia!

COBINA: Of course you’ll get headaches, you’ll get pallor.

KATHY: Depression

DEAN: And I also had itching lesions on my head

MELISSA: I had horrible a rash. All the time just very itchy skin.

DESIREE: I had problems with blood pressure. I would pass out sometimes if I stood up too quickly.

LARRY: I have severe osteoporosis. And I have the thinnest bones you've ever seen. (up inflection)

DESIREE: I lost an inch of my height from my spine just bending from lack of calcium. And my teeth are in pretty 
bad shape because the enamel on my teeth corroded or eroded because of lack of calcium.

COBINA: Tooth enamel loss

KATHY: And the infertility

CINDY: And infertility, which is something I know all too well.

ALLAN: And since I've had the disease and looked back on my life and my symptoms I see it all around me in other 
people.

Dr. KELLY: A multi-center study that was published in 2003 in the Annals of Internal Medicine suggested or 
indicated that the prevalence of Celiac Disease in the United States is actually quite similar to the prevalence in 
Europe.

KIMBERLY: To my knowledge, one in 133 people have Celiac

DESIREE: One in 133 people in the United States are proposed to have the disease

KATHY: Which actually -- if I'm not mistaken -- is more common than diabetes.

COBINA: It’s probably more prevalent than hypertension, diabetes, a number of those other things that they talk of 
being “Hidden Diseases.”

DESIREE: But only about 1 in 3-5,000 are getting diagnosed.

BILL: I went 54 years before I was diagnosed.

DEAN: After I was diagnosed I realized I've had it all my life.

KATHY: This is something I have had all my life

LARRY: I had Celiac Disease all my life.

ALLAN: I've had this disease all my life.

MUSIC ENDS. A NEW PIECE OF MUSIC BEGINS

KIMBERLY: My earliest recollection

COBINA: We can start way-back in childhood.

BILL: I was always sick.

KIMBERLY: I threw up frequently. My stomach always hurt.

DEAN: And it seemed like I was sick all the time.

ALLAN: When I was a boy it seems like, you know many times that I would just have this -- this dull ache in my 
stomach a lot.

CINDY: I had stomach aches that woke me up in the middle of the night and that took me out of my classroom and 
into the school nurses' office quite frequently.

KATHY: "I don't want to go to school mommy. I ate breakfast. I don't feel good."

KIMBERLY: I was shy -- very shy. Really painfully shy when I was younger. I think that my shyness was a direct 
result of not feeling well all of the time.

CINDY: Probably for me it meant not getting as much sleep as I should. And maybe being a little socially 
isolated (laughs) – I was leaving class quite frequently.

ALLAN: You know I just never seemed to fit in with other kids I think just because of the way I was.

KATHY: The skinniest kid on the whole planet.

ALLAN: I would eat and eat and eat and never put on any weight.

DEAN: Nobody wanted to play with me, you know or want me on the team.

DESIREE: I loved to swim, but I was unable to compete in the races and that kind of thing. I also loved to dance. 
Unfortunately I didn't have the stamina to really pursue it.

BILL: I had broken my arm one time and broke it again the same week and went back to the doctor and he says, “You 
appear to be a china doll.” I ended up breaking my arms over a two year period four times. I had broken my leg three 
times.

LARRY: I was absolutely skin and bones my ribs were sticking out, I was tall, lengthy, skinny uh had no energy, uh 
I couldn't function. Couldn’t think.

ALLAN: I would be told something and then -- you know -- just forget it immediately.

KIMBERLY: My head hurt often. I had difficulty concentrating.

DESIREE: I was really having a difficult time.

KIMBERLY: I always felt a little better when I first woke up in the morning. But right after I ate breakfast the 
stomach pain would return.

MELISSA: My stomach used to always get really cramped and bloated after I ate and I always called it my “pregnant 
belly” ‘cause it just felt like it was sticking out so far.

DESIREE: I was very, very self conscious about my body. Because my stomach was always bloated, I always thought 
that I looked pregnant. I'd start out in the morning maybe a size 6 and by the end of the day I'd need to wear pants that 
were a size 8 or 10 because my stomach had bloated so much. My ribs would stick out. My hip bones stuck out. But 
yet I had a protruding belly. And I can remember being 5 and 6 years old and having kids tease me about looking 
pregnant.

BILL: Going to the bathroom was -- you know -- 4, 5, 6, 7, 8 times a day was normal to me.

KATHY: It was annoying and scary in a sort of a way to have to arrange everything around the bathroom uh.

COBINA: I’m sure nobody ever got the full picture of (laughs) who I was or what I was because I was busy being 
dainty and making sure I could find a bathroom (laughs)

KATHY: Car trips. I dreaded car trips. Eating at a restaurant was a horror story and unfortunately with a father who 
was a musician, we ate at a lot of restaurants. It really kind of ruins your fun when you're a kid.

MELISSA: I try really hard to act like I'm having a good time but really I just want to be in the bathroom.

MUSIC SHIFTS IN TONE

CINDY: I remember my parents taking me to a doctor when I was young and started complaining of stomach 
problems.

BILL: I know that my mother took me to the doctor quite often.

KIMBERLY: And every, single time they either said it was viral, bacterial or anxiety related.

LARRY: They came up with all kinds of diagnoses -- all of which were wrong.

MELISSA: I had acid reflux and I had y'know, like -- oh gosh, so many things like, something about, like the way 
that my intestines sat in my stomach hit nerves in my legs and

BILL: Because they did not know what it was at that time, they called it that I had a virus.

KATHY: I think they tended to dismiss a child's complaints.

DESIREE: They thought that I was just a typical kid who maybe wasn't enjoying school as much as I could (laughs).

KATHY: “You don't want to go to school. There's a bully at school. You don't like your teachers. You don't like 
school.”

KIMBERLY: When I was 5 years old, my mother who is a very kind, soft spoken person had taken me to the 
pediatrician once again and the pediatrician pulled her aside and told her that my problems were because of her. And 
that she was creating my anxiety. And that's what was giving me stomach problems. And that she needed to be a better 
parent. And my poor mother cried all the way home. And I cried too because I knew that my parents had nothing to 
do with it.

COBINA: The doctors largely patted me on the head and said, “There, there dear you need to drink more milk and 
eat some nice fresh bread – your mother makes nice bread” and (laughs) and everything was sort of defeating

KIMBERLY: Every time that a doctor walked me out of his office telling me that I was fine, I knew in fact that they 
were wrong. That there was something wrong -- that I was not in completely great health.

CINDY: What was hard about that as a kid was not feeling well and not getting that validated.

MELISSA: I really felt like I was going crazy there for a while and all my friends just thought I was such a 
hypochondriac ‘cause I'd be like, “I just don't feel good!” (laughs)

CINDY: It would have been really helpful (laughs) to know that I had a disease because I think I was misunderstood 
as just wanting attention.

DESIREE: When I was in high school, things were particularly difficult.

MELISSA: I used to have a problem where, like if I ate anything it went right through me. So I would skip breakfast 
and then go to high school. And then I would eventually be so famished that I would eat something and (pause) there 
was this period between two classes where there was like 15 minutes where, like no one used the bathroom and I 
would have to, like run for the bathroom after eating something and then I would go to the office and call my 
mom -- this happened at least a couple times a week -- I would call my mom and be: “You HAVE to come and get me.”

COBINA: By the time I got to puberty I realized I was going to be a runt in size and I was exhausted.

ALLAN: When you're that age you'd like to be a little muscular and I could never put on any weight.

DESIREE: By the time I was 15, I was diagnosed with an inflamed stomach lining, a duodenal ulcer and spasms of 
the esophagus.

KATHY: The bathroom is the, like the major -- you kind to of have to figure out, for instance when I drove all over 
the place from the time I was 16 -- got my driver's license -- I was a mobile kid. But! I'll tell ya', I knew where every 
bathroom in the states of Connecticut, New York (laughs), Massachusetts and to where they all were (laughs)

MUSIC SHIFTS IN TONE

MELISSA: If I'd known about it all my life? Um

DESIREE: (laughs) That was a tough question (laughs)

COBINA: I often do think: What might have been different for me had I had more energy

CINDY: I think I would have been much better off knowing sooner.

COBINA: I might have done all kinds of things had I not just been too, darned tired.

DESIREE: I really wanted to be a dancer.

COBINA: I really wanted to do was go to veterinary school

ALLAN: And you know when you're like that you don't uh -- you know you don't go out for the football team 
because there's not enough of ya' there to -- to be a football player.

CINDY: I was too sick and -- so that was a huge loss for me.

DESIREE: I really felt like a major failure.

MUSIC UP AND OUT – END OF SEGMENT A

ANNOUNCER: You’re listening to Gut Reaction. The human face of Celiac Disease. An incurable disease that 
affects 1-in-133 Americans ….. Though there millions of Americans WITH the disease who are undiagnosed …… 
Hearing first-hand how the disease can touch every aspect of a sufferer’s life. When you have Celiac Disease if you 
eat gluten – that’s wheat, barley, rye … and in this country oats ….. when you eat gluten, your immune system attacks 
the food particles as though they were a virus. Everyone has what are called villi in their small intestine. And these 
villi absorb all the nutrients from the food you eat. Those villi are supposed to stick up, like shag carpet. But if you 
have Celiac Disease, instead of sticking up, the villi lie-down flat. So you DON’T absorb any nutrients ….. Your food 
doesn’t get digested ….. and it just passes on through. As you hear these stories, keep in mind …. 1-in-133 Americans 
have Celiac Disease.

COBINA: College was a disaster of course because in college you live on pastas and potatoes and biscuits.

CINDY: My first year as a freshman in college I lived down the hall from the bathroom which for a Celiac when 
you're not on a gluten free diet (laughs) is not a very good thing.
I got to the point where -- when I had to go to the bathroom, I had to go THEN and there and NOW. And so I got 
to be very good friends with the kids who lived in the dorm room across from the bathroom and would often sleep 
on their couch 'cause I had to wake up in the middle of the night several times to use the bathroom.

KIMBERLY: I think anyone can relate to having the flu. I kind of was walking through a cloud -- a flu cloud, so to 
speak – all of the time. My stomach was always bothering me. I had a headache a lot.

COBINA: Then I had an episode of rashing and almost passing out apparently from being cold

KIMBERLY: And then I would have these episodes where for one-to-three weeks I -- I mean I couldn't get out of bed.

MELISSA: When I was in college, when they gave me all those strange diagnoses, they had me taking Zelnorm to 
go the bathroom essentially and then um taking mineral oil in my juice in the morning so, like every morning I would 
have to, like have this little cup of juice, you know? (laughs) Really isn't that what you did in college? (laughs)

CINDY: I couldn't get through a class, I mean I'd be in college and there were often times when I needed to leave my 
class and it was embarrassing and it was really uncomfortable and at one point I almost dropped out.

MELISSA: I became like sort a control freak about always knowing where the bathroom is

CINDY: as far as dating goes, let's just say (laughs)

BILL: I didn't go on a lot of dates. I remember that for a fact

CINDY: Y'know, when you’re -- when you’re a young woman you don't necessarily -- you want the mystery -- you 
want to appear very feminine and it's very hard to maintain that image

COBINA: Not taking time to eat and pretending I just wasn’t hungry when I was just really starving to death 
because I knew it would trigger a – not just a little bathroom trip but a rush and a very unpleasant rush.

DESIREE: I didn't go out on a date where I knew I had to eat. I'd go to the movies, but not to dinner beforehand. 

KATHY: And you couldn't eat right before you went home. You had to allow, like an hour just to see how it was 
gonna effect you. And God help you if it didn't effect you well because then you were stuck wherever you were for 
another hour which wasn't a whole heck of a lot of fun.

CINDY: I met my husband (laughs). My first date with him it was very romantic and I couldn't eat anything -- I had 
a terrible stomach ache and of course the only thing I picked at that night was bread because it seemed to me like it 
would have been the safest and most soothing choice. We went to this very fancy restaurant and we ordered our meals 
and sure enough came the stomach ache and it horrendous! And I excused myself and went to the bathroom and didn't 
come back for about a half-hour. And by the time I returned to the table, he's kind of looking at me, "Are you OK?" 
(laughs) And I said, "No, I'm not. And we need to leave and we need to talk" (laughs). And when we got in the car 
I tried to explain to him what my problem was and at the time I didn't know what my problem was -- I just knew 
that this happened a lot. Out of nowhere I'd get these horrendous stomach aches and I'd have to go to the bathroom 
and have to go immediately and I'd have to go for a while and he did NOT want (laughs) to hear it! He just kept 
saying "Oh that's OK you don't have to tell me" and I said, "Look if you want to be in a relation with me, you need 
to know this."

COBINA: I had some years, probably 10 years when all the bowel symptoms abated. I don’t know why.

DEAN: Until I got to Vietnam. And that's -- it could have been stress there – that’s where I had severe cases of 
diarrhea. And the flight surgeon said “Well” – he had these little pills and took these pills and they restricted the 
diarrhea but I had to quit taking them 12 hours before flying. So about 2 hours after I'd stopped taking the pills, 
I was back to the john on a regular basis.

KATHY: Oh boy, my most embarrassing moment, uh I have a pastel of them but

MELISSA: I remember one time when I was in high school I was staying the night at a friend's house and you 
know I don't remember what I'd eaten, but of course you know I had to run to the bathroom like immediately 
and it was, you know like 40 minutes in the bathroom-type scenario. And my friend was really worried about me 
and this was probably like 2 AM and she woke her parents up to go and get me some, like, stomach medication and, 
like, Imodium and stuff and you know like I wasn't really aware of it, but she had them, like run down to the 
convenience store and like all this stuff and I felt SO! horrible! That – like here are these people, like being woken 
up at 2 in the morning just to (laughs) just to – you know help me or whatever.

DESIREE: I'm a teacher -- and there are limited number of bathrooms (laughs) obviously. And the closest bathroom 
to my classroom was one that was shared with students. And I was in the bathroom and I was very, very sick. And two 
students came in and made it obvious how sick I was by laughing and snorting and um being very crude about the smell. (laughs) And I just cried. 
It was thoroughly embarrassing and I was terrified that they would find out that it was me because then I'd be, you 
know -- everyone would be talking about it in the school and I just couldn't handle that.

BILL: Well the most embarrassing thing that's happened to me – I was in a store and I had an -- a stomach attack. I 
had no idea what it was from. I'm usually very careful on what I do eat. I just hit me so fast. I was gettin' ready to 
leave the store and the stomach hit and -- I mean -- there was NO way to get to a bathroom. I mean it just exploded. 
And I mean it was all OVER the place. I mean -- all over the floor. I mean -- everybody's kind of starred at me -- 
looked at me I mean I just -- uh you know -- I offered to clean it up and I tried doing it. I just ran out of there. I've
never gone back to that store. And my wife doesn't understand why -- I've told her why recently. About a year ago. 
But why I will never go in that store again. I just ran out to my car, put a plastic bag over my seat and ran home. But 
I mean it was devastating.

MUSIC ENDS

KATHY: Well I adapted to my symptoms as I got older now, interesting enough

COBINA: Celiac disease does require adaptation of your life

BILL: You adapt, you know, to what you have to do.

COBINA: I think I just bulled along.

KIMBERLY: I dug my heel in and I was determined to accomplish what I wanted to accomplish.

BILL: I mean it's just -- that's just me. That's just the way I am.

DESIREE: Most of my symptoms were just stomach aches, the esophageal spasms and of course exhaustion. So it 
was just a matter of trying to schedule things during the middle of the day. The mornings and the evenings were 
really hard for me because I was so tired. I had a very hard tired getting started in the morning so I took jobs that 
started at 10 and went 'til 6 rather than 9-to-5.

COBINA: You do adjust your work life to it. My most favorite jobs were jobs where I had access to my own private 
bathroom

ALLAN: You just have pains every now and then.

DEAN: But a man can adapt to that.

CINDY: This is just my reality.

ALLAN: I do know that having had to struggle more through life that -- you know – what doesn't kill you makes 
you stronger.

SNEAK IN MUSIC

KIMBERLY: How did I compensate for the pain? Well I guess I was blessed with determination. It's just gut 
determination.

COBINA: As far as going to doctors is concerned

KIMBERLY: I would go to the doctor and every single time they would say it was viral or bacterial and there 
was nothing wrong with me.

LARRY: One day I woke up and I was dizzy. And I walked into a wall. And the doctors put me in the hospital and 
they said “Ah it's in your head.”

CINDY: The doctors said that possibly I had a parasite.

DESIREE: I went to a couple of different specialists. I went to a gastroenterologist. I went to a hematologist 
because blood work that I had had done for my lack of energy came back as positive for Blast Cells. It's one of the 
first signifiers of leukemia.

CINDY: And so they ran a lot more tests and learned that I had elevated liver enzymes and that led to a series of 
many MORE tests and x-rays and it was really scary ‘cause it felt like one thing on top of the next and according to 
the doctors that I was seeing, they were completely unrelated (laughs). And all of a sudden I went from someone who 
had really bad stomach aches and IBS to – you know – ruling out cancers and ruling out, you know chronic liver 
failure and really scary diseases that I had to face as a possibility for myself.

COBINA: And I was tested and told I probably had Lupus although they could not prove it.

DEAN: In Vietnam I got the idea that I had a fear of flying syndrome. And of course that means you go to the 
psychiatrist and he works on ya’, you know?

COBINA: I’d get those kinds of diagnoses, I’d go back to the doctor and for – oh I don’t know how many 
years – I took Phenobarbital for irritable bowel.

CINDY: They gave me a muscle relaxant and the muscle relaxant made me feel horrible.

KIMBERLY: I landed in the emergency room for debilitating stomach pain. And the ER physician said I had an ulcer. 
And I went for the follow-up appointment to my primary care physician the next day and he ran some tests and after 
ruling out an abdominal tumor, he said my gall bladder was enflamed.

KATHY: Now I first floated the question of Celiac Disease when I was in the Air Force. When I was 18 years old.

COBINA: I’m a registered nurse and I’m as well-trained as any registered nurse probably and what I had heard of 
Celiac disease is, “It’s a tropical thing. Celiac Sprue happens because of some kind of parasite and yeah and by the 
way there’s this little genetic thing, but not – nobody has it.” And that’s what I was taught.

KATHY: And I said, "Could I possibly…?" "Oh No. You're just having" They have a name for it – “Intern's Hysteria” 
or something like that -- where you read about something and then you – y’know -- think you have it and so they 
just put it off.

DESIREE: Every doctor sort of looked at me only through the eyes of their own specialties.

MUSIC ENDS

COBINA: At my very worst …

DESIREE: Things that were mild annoyances were now -- you know just completely incapacitating me.

DESIREE: My stomach aches were incredibly bad. I was unable to go more than 40 minutes without using a 
bathroom.

KATHY: It was a horror story. A horror story.

COBINA: I had gotten to the point where I couldn’t take a few steps without there being a – a – leakage. And it 
was very unpleasant

KATHY: My abdomen hurt all the time. (up inflection)

DEAN: I knew I was sick. I knew there was something wrong with me.

KATHY: It got so that I couldn't make it up the basement stairs after throwing laundry into the washer. It was a 
nightmare.

DESIREE: Then my tongue started to swell up and would crack and I didn't know why. I uh -- you know if 
someone shut the lights off I was completely blind -- I couldn't see anything

KATHY: My hair was fallin’ out. I could barely see. I changed my glasses every six months and it still -- I still 
couldn't see.

DESIREE: My hair was falling out and that actually was the thing that sort of scared me the most. Because I 
remembered a friend we had who had anorexia and her hair started to fall out and I couldn't figure out why mine 
would be falling out

DEAN: My wife really got scared. She says she didn’t want to hear another complaint unless I went back to the 
doctor so I did.

BILL: And the first question out of his mouth he says, “Why you so pale?” And he did a blood test and he said, 
“Lookit, you're coming back tomorrow morning. I'm doing a blood test right now, we're gonna run it tonight and 
tomorrow morning I want you back here with your wife and we'll finish the physical.” Following morning, I came 
back in and he says, “You need to come in my office.” We went in there and he looked at me and my wife and he 
says, “I'm gonna tell ya something” he says, “And I don't know how to say this but the fact” He says, “You have 
every indication of full-blown colon cancer.” And I says, “This can't be!” He says, “Well you're anemic. Everything 
is pointing to that.” He says, “We need to put you in the hospital and do colonoscopy. Right away.”

DESIREE: I'd given up. And in the end I passed out at work. I just was walking along the hallway and I guess my 
blood pressure plummeted and I put my hand up against the wall and slid down the wall. Some colleagues came 
over and you know sort of helped me up and I really don't remember a lot of that. A very dear friend came and took 
me to a – to her doctor.

COBINA: And I went in to see my doctor on an urgent basis – he tried to examine me and uh there was a 
tremendous uh – accident. On the floor. I was dying of shame, but I think the doctor was even more mortified because 
somehow he probably felt that he was responsible for this. But the wonderful thing is:  he said, “I’ll step into the next 
room and see – there’s a doctor here – a new doctor maybe she knows something.” And this wonderful woman 
(starts to cry) she came into the room and she says , “Oh Duckey, I know exactly what’s wrong with you.” And she 
says “We can fix you in a heartbeat.” (laughs while crying) And she had a wonderful English accent. She says, 
“Nothing to it. You’ve got celiac disease. We can fix you.” Just like that (laughs while crying). And so it was 
fixed (laughs while crying)

MUSIC UP FULL

DR KELLY: I'm Ciaran Kelly and I'm an associate professor of medicine at Harvard Medical School. Celiac Disease 
has not been easy to diagnose in the past. Because the condition occurs deep within the body in the small intestine, 
diagnoses required a sample or a biopsy of the small intestine to be obtained and looked at under the microscope to 
identify the changes -- the inflammation that's associated with Celiac Disease. And this required that the individual 
have what's called an “Endoscopy” which is a camera test where a small camera is placed into the mouth, through the 
esophagus or swallowing tube, through the stomach and into the small intestine to take small pieces of tissue for 
diagnoses. And obviously this is a somewhat invasive test. And although it's a routine test, something that people did 
not undertake lightly. There's been a big change recently in the way in which Celiac Disease is being diagnosed. And 
the big change has occurred because of the availability of a simple and non-invasive test that's quite reliable in 
identifying people who almost-certainly have Celiac Disease. The test is a blood test. So in essence a simple blood test 
has replaced an intestinal biopsy which is much more invasive. And because of that, there's been a huge increase in 
the numbers of individuals who are being diagnosed with Celiac Disease. It's still important that they be evaluated and 
undergo a biopsy to confirm the diagnoses. Because even though the blood test is very accurate, intestinal biopsy is 
still the Gold Standard for diagnoses and so that -- a Gold Standard has not been set aside but access to diagnoses has 
been made much easier by the new blood test.

MUSIC UP – END OF SEGMENT B

ANNOUNCER: You’re listening to Gut Reaction. The human face of Celiac Disease. An incurable ailment that 
affects 1-in-133 Americans. Though millions of Americans HAVE the disease, but are undiagnosed …… When you 
have Celiac Disease if you eat gluten – that’s wheat, barley, rye … and in this country oats ….. when you eat gluten, your 
immune system attacks the food particles like they were a virus. And that damages your small intestine so you don’t 
absorb any nutrients from the food that you eat … Your food doesn’t get digested and it just passes through you. 
Remember …. 1-in-133 Americans have Celiac Disease.

DESIREE: When the doctor told me that the blood came back positive for Celiac I was in shock.

MELISSA: And I remember thinking like, in a way "Thank God!" Like, there IS something concrete that is wrong 
with me. It's not all these, like phantom illnesses that you know no one knows about.

KATHY: And I felt like the entire world had just gotten a million times brighter

DESIREE: And I was really grateful to have a disease (laughs) I mean it sounds so ridiculous, but it's like "Oh my 
God! Thank you!" You know (laughs)? Who would be grateful for having a disease? But you ARE. You're SO 
grateful when that moment because somebody finally says "You're not crazy."

KIMBERLY: It's a feeling of justification that -- that I'm not crazy. That's how I felt. Because my inner voice kept 
telling me that "Something is wrong."

DESIREE: It was liberating. It was really liberating.

KATHY: I was euphoric.

KIMBERLY: And to be told that "No, you DO have something and it's called Celiac Disease" and that really is 
such – is a simple remedy. You know to not have medications, to not have therapies, to not have surgeries to combat 
this illness. It's -- it was almost -- it felt like a miracle to me.

DEAN: It wasn’t 'til after I got diagnosed for about three days when I had a shot of energy and I realized what "good 
feeling" was. The third day, when I woke up and felt so good and I said, "Man this is -- this is THE answer."

KIMBERLY: I had headaches all of the time and I never realized how frequently I was taking medication for the 
headaches until I went on a gluten free diet and everything completely went away. And it was just a couple weeks 
after -- and I realized "Gosh, I have not taken medicine for my headache!"

CINDY: About six months later I got my period again and my stomach aches were gone. I mean after living a life with 
stomach aches I mean there was not a day that passed where I didn't complain of something I didn't HAVE any more!

DEAN: I told people I feel better at 75 than I did at 50. Much better.

DR. KELLY: There really is no medical treatment in the form of a drug therapy for individuals with Celiac Disease. 
The recognition that Celiac Disease is in fact not rare but quite common has led to increased interest in the possibility 
of a drug treatment for Celiac Disease. I think there's mixed opinion as regards whether or not this is necessary or a 
good thing. But I will say that there are very many individuals who are on a strict, gluten-free diet for Celiac Disease 
who would welcome the opportunity of taking a medication that would allow them perhaps to eat out in a restaurant 
and be less concerned about the possibility of gluten contamination.

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MELISSA: I went down, I got my gluten-free diet and I started to look through it and

BILL: I mean I just sat there in the chair going like, "OK, what do I eat now?"

DESIREE: When the doctor first told me that it might be Celiac I went home and I looked it up and I thought, "Wow 
this -- this sucks! I don't really want this. This is gonna be a very hard life if I have this."

MELISSA: My favorite food group was essentially wheat (laughs)

DESIREE: My whole life was wheat, basically, with the occasional piece of protein thrown in (laughs)

KATHY: You can't eat the bread, the cookies, the uh all the good stuff -- cake.

BILL: I couldn't have spaghetti. I used to love spaghetti.

KATHY: Pizza Hut pizza. I mean I could have LIVED at Pizza Hut -- I could have just moved a bed into Pizza Hut, 
I loved Pizza Hut that much. That REALLY just killed me.

ALLAN: But the big thing for me was beer. I traveled to Europe 7 or 8 times to drink beer. And I was a beer 
connoisseur.

MELISSA: I went down to Whole Foods 'cause that's where you think you're gonna be able to get everything and I 
remember just wandering around -- it felt like I was in there for two hours. Just picking up all of my favorite foods, 
reading the first ingredient which was clearly wheat or gluten and placing it back on the shelf and just -- I remember 
the employees kind of looking at me -- you know -- or I felt like they were looking at me like, "Why has she been in 
here for so long and why's she reading all the labels?" I just -- I seriously went up and down every aisle just looking at 
food and just you know putting it back. And I was just so frustrated.

KATHY: The first thing I did was log into a Google search. And came up with -- within a week -- I had a working diet.

COBINA: I began to read everything I could find. I had no inkling that there was another person in the world who 
had celiac disease.

DESIREE: I surfed the 'net, looking for any kind of support that I could and I found um numerous, numerous websites.

KATHY: If you email and say "Help! I'm new! Tell me how to start this!" You get bombarded with a hundred 
emails from lovely, wonderful people who've been through it.
 
DESIREE: And I was really grateful to have that support.

BILL: Just learning about the foods and then finally understanding that there ARE a lot of foods out there that 
you CAN eat. You're not as restricted as I thought.

ALLAN: As I learned more about gluten and the effect on the body, I'm thinking "How much more of this do I want?" 
You know "This stuff is like rat poison. So, you know am I happy to have a just a little rat poison in my diet?" That 
was the question I asked.

DESIREE: Then I went -- I set about replacing my toaster and throwing out all my wooden spoons and getting metal 
utensils for cooking and throwing out my pizza stone and getting a new one and that was a huge thing.

KATHY: All of a sudden one day you look back at what you've eaten over the past year and you'll say "Oh wow, wait 
a minute, with a few adjustments, I can do this!"

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DESIREE: It's been about 4 years since my diagnoses

KIMBERLY: My challenge lies with actually dealing with the reactions of other people. I've learned that people in 
general, by nature tend to be more focused on the negative than the positive. And when I'm in a situation where I need 
to explain why I can't eat certain things, the general reaction is, "Oh that's awful!"

COBINA: Being invited to someone else’s house is so often – I feel sorry for the hostess. I offer to bring things and 
I usually carry a few crackers in my purse.

DEAN: Restaurants. Eating away from home

MELISSA: It's frustrating to go to a restaurant and have the waiter think that you're insanely picky (up inflection). I 
always just feel bad when I go in restaurants.

COBINA: I was invited to someone’s house and she knew I couldn’t have wheat. And so she served the most wonderful big dish of lobster thermodore. And it’s over noodles. And there 
were nice white rolls on the table. And I was really hungry I had traveled a long way everybody was tucking in and I 
said – there really was nothing – “I’ll pick out the lobster and take my chances with what’s clinging to it.” She says, 
“There’s no wheat in that. These are white rolls. I only used white flour to make the sauce. And the noodles are white 
noodles. They’re not wheat.” And you know I thought, well I guess education is – it’s my responsibility to educate 
people, not – I felt so badly about that.  You wouldn’t say to a diabetic, “Oh just have one little piece of cake.” Or 
someone who’s going to die from a peanut allergy, “Well go ahead just a little peanut butter won’t kill you.” Well the 
Celiac doesn’t get quite that dramatic but eventually we will get that reaction. We’ve got to educate people and try to 
keep a good humor about it I think.

BILL: Well when I was first diagnosed -- about a year later I finally went to my wife and I said, "Look I need to talk to 
people about this disease. So I immediately set up a program and I put an ad in the paper figured, "well if somebody 
shows up that'd be fine." You know. Maybe we'll have 2 or 3 people. Well the first meeting, 30 people showed up. 
We couldn't even fit in the room. It just makes me feel really deep-down, you know great that we've accomplished 
something here.

DEAN: Well of course I'll tell ya' about the rewards. There's nothin' better than having a good ol' gut that feels good.

DESIREE: I had absolutely no idea that you could feel this good (laughs)

KATHY: I can't -- I just can't believe the -- the change in my health. It's phenomenal.

DESIREE: The really great thing since diagnoses is that I was infertile for a long time and since diagnoses I have a 
beautiful little boy. So I'm REALLY, really grateful for that (laughs)

COBINA: If you walk up to Joe Blow on the street and say “OK buddy. No more brownies, no more lemon meringue 
pie, no more donuts, no more bagels, no more of any of that but we can fix what’s wrong.” Man, why would anybody 
not comply with this diet? It is a small price to pay.

DESIREE: Had I known that everyone felt this good all the time I probably would have raised a stink a lot 
earlier. (laughs)

KATHY: The anemia's gone. I'm not wrestling with my blood sugar all the time. The depression is gone. My eyes have 
straightened out. The rewards are just -- You can't even list 'em.

LARRY: I feel great!

BILL: I live every day you know just in happiness. Even though I know I have a disease, I'm -- I'm a healthy person.

COBINA: I kind of have to watch my weight. Which is a big treat. That I can just say “Wow! Look at me. I weigh 
too much!” (laughs)

DEAN: And it just -- just feels good, you know?

KIMBERLY: I mean it's not a cliché -- the grass IS greener. The sky IS bluer.

KATHY: It's like being born again, physically.

KIMBERLY: And it's a blessing with challenges but it's certainly not a curse. And I wish people would understand that. When you've walked your entire life with a piano on your back and to have that 
removed -- it's just -- you feel like you're walking on air.

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