Skip to Navigation

Celiac Disease (transcript)
Share This:

(ANNOUNCER)

Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association; an association of independent, locally-operated and community-based Blue Cross and Blue Shield plans, supporting solutions that make quality, affordable healthcare available to all Americans.

 

(MUSIC)

 

(DR. PETER SALGO)

Welcome to Second Opinion, where each week you get to see firsthand how some of the country’s leading healthcare professionals tackle health issues that are important to you.  Now, each week our studio guests are put on the spot with medical cases based on real life experiences, and by the end of this program, you’re going to learn the outcome of this week’s case.  You should be better able to take charge of your own healthcare, at least that’s our hope.  I’m your host, Dr. Peter Salgo, and today our panel includes our Second Opinion primary care physician, Dr. Lou Papa, from the University of Rochester Medical Center, Alice Bast from the National Celiac Awareness Foundation, Dr. Daniel Leffler from the Beth Israel Deaconess Medical Center, and Dr. John Looney from the University of Rochester Medical Center.  Let me tell you a little bit about the patient whose case history is in my chart over here.  His name is Gary.  He’s forty-two years old and he’s married.  He works as an accountant.  He’s in his primary care physician’s office complaining of swelling in his hands and also of joint pain.  At that point, Lou, if you’re the primary care physician, what do you do?

 

(DR. LOU PAPA)

Well, be curious to see how long that’s been going on.

 

(DR. PETER SALGO)

Mm-hmm.

 

(DR. LOU PAPA)

But if he’s got swelling in his — in his hands, I want to see if that’s soft tissue or if that involves the joints —

 

(DR. PETER SALGO)

Okay.

 

(DR. LOU PAPA)

— because that’s a different approach to it.

 

(DR. PETER SALGO)

Well, I’ve got some family history.

 

(DR. LOU PAPA)                                    

Okay.

 

(DR. PETER SALGO)                                  

He has a family history of rheumatoid arthritis.

 

(DR. LOU PAPA)                                    

Mm-hmm.

 

(DR. PETER SALGO)                                  

He personally has been told that he’s lactose intolerant.

(DR. LOU PAPA)                                    

Mm-hmm.

 

(DR. PETER SALGO)                                  

And he’s noticed this in himself, so he tries to stay on a lactose-free diet, takes Lactaid when necessary.  Does this help anybody here?

 

(DR. DANIEL LEFFLER)                              

Such a big portion of the population has lactose intolerance, especially at that age.  I don’t think it’s a big red flag for anything, and it’s fairly…

 

(DR. LOU PAPA)

— and it’s not — it’s interesting history, but I’m not — right now it doesn’t help me.  I’m more focused on his hands.

 

(DR. PETER SALGO)                                  

All right.  So what do you want to do at this point, other than a history and physical?  And I can tell you that short of — of getting a really detailed joint exam, the details of which I don’t have here —

 

(DR. LOU PAPA)                                    

Right.

 

(DR. PETER SALGO)                                  

— you know it.

 

(DR. LOU PAPA)                                    

Right.

 

(DR. PETER SALGO)                                  

That’s what he looks like.  His doctor decided to screen him for rheumatologic conditions.  Is that what you guys would do?

 

(DR. LOU PAPA)                                    

If — if the examination supported that.  If there was evidence that he had an inflammatory arthritis that raised concern in my mind, especially with that family history, I think that’s a reasonable approach, along with some x-rays of his hands.  So I imagine that’s an ANA rheumatoid factor, you know, some sedimentary — sediment—

 

(DR. PETER SALGO)                                  

So they’re looking for Lupus and — and —

 

(DR. LOU PAPA)                                    

Right, right, just a — kind of a big net casting out, just to see if anything comes up, not that it’s diagnostic.

 

(ALICE)                                 

Or anything else autoimmune.

 

(DR. LOU PAPA)                                    

Right.

 

(DR. PETER SALGO)                                  

Right.  I can tell you that Gary then volunteers.

 

(DR. LOU PAPA)                                    

Mm-hmm.

 

(DR. PETER SALGO)                                  

That he has a newborn baby at home and he hasn’t been sleeping.

 

(DR. LOU PAPA)                                    

Mm-hmm.

 

(DR. PETER SALGO)                                  

At which point, doctors and others, his PCP says, “Your extreme exhaustion is fibromyalgia, maybe, and that causes your joint pain, maybe.”  So he gives him a diuretic and he sends him on his way.

 

(DR. LOU PAPA)                                    

Okay.

 

(ALICE)                                 

Oh, man, this is making me angry.

 

UNIDENTIFIED MALE:                                

That sounds like a problem.

 

(DR. LOU PAPA)                                    

Yeah.

 

(DR. PETER SALGO)                                  

Why does this make you angry?

 

(DR. LOU PAPA)                                    

That’s kind of bizarre.

 

(ALICE)                                 

This sounds just like, you know, they’re — you know, how many diagnosis is this poor guy going to get and they’re just going to keep giving, you know, a diagnosis for — for each symptom. 

 

(DR. LOU PAPA)                                    

Well, I —

 

(ALICE)

What’s the underlying cause here?

 

(DR. LOU PAPA)                                    

It’s — it’s kind of a bizarre story because I wish I had more information in terms of his blood tests and his x-rays, because if he has an inflammatory arthritis, they can be fairly destructive, and I’d rather not just treat this guy for — diuretic, for what?  I’m not sure.

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(DR. LOU PAPA)                                    

And I’m — I’m — I’m not — maybe we’re missing a big piece of the history here, where, you know, his baby’s cranky, therefore he has fibromyalgia?  I’m not — I don’t understand.

 

(ALICE)                                 

And fatigue?

 

(DR. JOHN LOONEY)                              

So — but this is also something where you can figure things out by examining him.

 

(DR. LOU PAPA)                                    

Right, exactly.

 

(DR. JOHN LOONEY)                              

And you should have a very good idea —

 

(DR. LOU PAPA)                                    

Right.

 

(DR. JOHN LOONEY)                              

— whether he has an inflammatory arthritis and whether he has fibromyalgia —

 

(DR. LOU PAPA)                                    

Right.

 

(DR. JOHN LOONEY)                              

— just by examining him.

 

(DR. LOU PAPA)                                    

It’s — exam is a key.

 

(DR. JOHN LOONEY)                              

Does he have — does he have tender points? 

 

(DR. LOU PAPA)                                    

Right.

 

(DR. JOHN LOONEY)                              

If he doesn’t have tender points, then you can’t really blame this on fibromyalgia.

 

(DR. PETER SALGO)                                  

Well, there’s a handwritten note in the chart.  It does say here that whatever the inflammatory work-up —

 

(DR. LOU PAPA)                                    

Right.

 

(DR. PETER SALGO)                                  

— was in terms of rheumatoid —

 

(DR. JOHN LOONEY)                              

Mm-hmm.

 

(DR. PETER SALGO)                                  

— it turned out to be negative.

 

(DR. LOU PAPA)                                    

Okay.

 

(DR. PETER SALGO)                                  

Okay.  And he’s on this diuretic regimen for about a year, comes back to his PCP’s office —

 

(ALICE)                                 

What do you mean by a diuretic regimen?

 

(DR. PETER SALGO)                                  

Well, he gives him a diuretic for the joint swelling, right?

 

(DR. LOU PAPA)                                    

Yeah —

 

(ALICE)                                 

Okay.

 

(Simultaneous speech)

 

(DR. JOHN LOONEY)                              

We don’t like this.  We don’t like this.

 

(ALICE)                                 

We keep throwing — oh, we’re — we’re — we’re just keep throwing medicine at him.  Okay.

 

(DR. PETER SALGO)                                  

Right.

 

(DR. JOHN LOONEY)                              

But — but — but you wouldn’t treat the hand swelling with — with a diuretic.  I mean, he hasn’t had swelling of his legs.  I mean, what — what are you — what are you treating here?

 

(DR. PETER SALGO)                                  

Allow me to rephrase what you’ve just said.  You wouldn’t treat hand swelling with a diuretic, they did, and he comes back a year after his first appointment, he’s having more symptoms.  And specifically now, he’s complaining of rectal urgency when he’s working out, and it’s affecting his life.  He says he can’t even eat out anymore.  He is feeling bloated all the time.  He’s losing weight. 

 

(ALICE)                                 

Oh, this is sounding a little too familiar to me.

 

(DR. PETER SALGO)                                  

He is wondering if his lactose intolerance can be treated better, so his PCP gives him a prescription for

Laparamine.  Lou, Lou —

 

(DR. LOU PAPA)                                    

Well, I mean —

 

(DR. PETER SALGO)                                  

— you can barely contain yourself over here.

 

(DR. LOU PAPA)                                    

Yeah.  So a couple of things.  I mean, the — for somebody like this, a couple things come to mind.  I’m still kind of stuck on this rheumatologic condition.  Yes, his — his rheumatologic panel may have come back negative, but that’s not diagnostic.  I mean that helps support some diagnoses.  You can have, you know, serologic rheumatologic disease.  And I would still like to see what those x-rays look like, and I’m not sure still about the fibromyalgia.  Now he’s got some GI symptoms, and that raises the concern for other issues.  There’s other concerns in the GI tract such as inflammatory bowel disease.  There can be irritable bowel disease.  There can be malabsorptive symptoms.  There can be liver disease that can be associated with autoimmune disease that can cause these symptoms.  Now he’s changed.  So he’s been on this — this lactose —

 

(ALICE)                                 

Yeah, just —

 

(DR. LOU PAPA)                                    

— compliant diet and he says, “Now I’m worse,” and it’s — if — I’m assuming it sounds like he’s doing the best he can and he’s gotten worse.  Something else is going on.

 

(ALICE)                                 

Keep treating the symptoms —

 

(DR. JOHN LOONEY)                              

Right.

 

(ALICE)                                 

— time and time again.  You know, it’s — it’s the typical story.

 

(DR. DANIEL LEFFLER)                              

I think this is characteristic of diagnostic anchoring, where you give somebody a diagnosis, and then when things change you stick with that diagnosis and tack on other diagnoses to that rather than reevaluate whether or not you were correct in the first place.

 

(ALICE)                                 

For me — I mean, for my diagnosis, when I was going through a lot of GI symptoms, it still took them seven years to figure out what was going on, and they just kept throwing, “Oh, you’ve got a migraine headache?  Here, here’s your Imitrex,” you know. 

 

(DR. PETER SALGO)                                  

Uh-huh.

 

(ALICE)                                 

“You have, you know, anemia?  Let’s fix that,” you know, so —

 

(DR. JOHN LOONEY)                              

And — and also you’d like to — you’d like to get some idea, at this point, you know, in somebody who’s having weight loss and has some GI symptoms, what’s happening with their diet.  Are they —

 

(ALICE)                                 

And what’s — and what’s the urgency all about?

 

(DR. JOHN LOONEY)                              

Are they eating?  Are they — I mean, is it — are their calories down?  If they’re not — if they’re eating the same as they’ve been eating and they’re losing weight, then you get really —

 

(DR. PETER SALGO)                                  

Well, let me —

 

(DR. LOU PAPA)                                    

There can be very serious diagnoses here.  I mean, there’s ulcerative colitis that can cause, you know, extra intestinal symptoms.  There’s malabsorptive symptoms, like Celiac disease, that can cause extra intestinal symptoms.  There’s perineoplastic diseases that can cause —

 

(DR. PETER SALGO)                                  

What’s going — what’s going on here is, I sense is, everybody has got a laundry list of diagnoses —

 

(DR. LOU PAPA)                                    

Right.

 

(DR. PETER SALGO)                                  

— you want to rule in or rule out, which, at least when I see people —

 

(DR. LOU PAPA)                                    

Mm-hmm.

 

(DR. PETER SALGO)                                  

— means that the most important moment is the beginning.  If you fix too early, as you pointed out, you can get into big trouble.  So let me tell you about Gary.  He gives these — the antidiarrheal drug a try, but he’s still feeling, quote, awful all the time.  He is frustrated.  And this is actually written in the chart, he feels his doctor should be working harder to find out what’s wrong instead of — and he actually uses a phrase you used — instead of throwing drugs at him.  What, at this point, are the diagnostic possibilities that you’re concerned about?  You — you — what — what are — what are you thinking?

 

(DR. LOU PAPA)                                    

I — I’ve mentioned some of them.  One of the big things that are on my list is if — if he has inflammatory bowel disease that can be causing some extra intestinal symptoms.  If he has — he’s young but if he has a perineoplastic situation, if he has colon cancer —

 

(DR. PETER SALGO)                                  

What’s that?  What’s —

 

(DR. LOU PAPA)                                    

If he has some GI cancer that’s causing systemic symptoms that he’s experiencing.

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(DR. LOU PAPA)                                    

If it is a malabsorptive syndrome, Celiac disease being one of them, if he has underlying liver disease, that can play a role, so there’s — and I imagine some of these tests have been done.  I don’t know.  If he just threw diuretics at him, maybe not, but, you know, some blood work and getting a gastroenterologist involved.

 

(ALICE)                                 

Well, I — I also think we need to look at the family history here, I mean, and look at, you know, how much of that’s been done.  I mean, I keep going back to that.

 

(DR. LOU PAPA)                                    

And that — that’s a good point because even with a lot of these, colon cancer, ulcerative colitis, inflammatory bowel disease, Celiac disease malabsorption symptoms, a lot of those have hereditary components that would be important.

 

(DR. PETER SALGO)                                  

All right.  Gary has now had symptoms for two years, and he decides to go to a new PCP.  Collective sigh of relief I hear on the panel.  And that doctor then orders blood work.  And what do you want to order?

 

(DR. LOU PAPA)                                    

I would like to — I mean, I’d like to see his blood panel, see what his CBC looks like.  That’s gives me an idea if there’s significant malabsorption or other iron deficiency that you can see —

 

(DR. PETER SALGO)                                  

Okay.

 

(DR. LOU PAPA)                                    

— in certain conditions.  I want to see what his renal function looks like.  Some renal diseases can be associated with some of these disorders.

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(DR. LOU PAPA)                                    

I want to see what his hepatic profile looks like, see if his liver’s functioning well.  That will also give me an idea of what his — his nutritional parameters look like.

 

(DR. PETER SALGO)                                  

Okay.

 

(DR. LOU PAPA)                                    

And I’d —

 

(ALICE)                                 

How about the Celiac panel?

 

(DR. LOU PAPA)                                    

Right, and I’d like to —

 

(DR. PETER SALGO)                                  

Okay.

 

(DR. LOU PAPA)                                    

— see the Celiac screen.

 

(DR. JOHN LOONEY)                              

I’d like to have a sed rate and CRP, as well.

 

(DR. DANIEL LEFFLER)                              

Right, I would agree to sed rate and CRP and —

 

(DR. PETER SALGO)                                  

Here’s what I’ve got.  I’ve actually got some numbers for you.

 

(DR. LOU PAPA)                                    

Okay.

 

(DR. PETER SALGO)                                  

His TGIGA, a hundred eighty point four, high.  His IGA, three thirty-six.  IGG, eleven hundred.  His T-4 thyroid is zero point six, which is low in that laboratory.  His hematocrit, the amount of red blood cells, is twenty-two percent, very low.  ANA and RF, which are rheumatoid tests are negative, and his fecal leukocyte is negative.  Somebody want to translate this?

 

(DR. LOU PAPA)                                    

Well I have just one question on there.  Did they — did they mention what his MCV was —

 

(DR. PETER SALGO)                                  

No.

 

(DR. LOU PAPA)                                    

— on the blood?

 

(DR. PETER SALGO)                                  

What — what you’re asking for, for our viewers, is —

 

(DR. LOU PAPA)                                    

Is the (( )) —

 

(DR. PETER SALGO)                                  

— are the red cells, in addition to being too few too large or too small, because if they’re too small, it’s associated with no — not enough iron —

 

(DR. LOU PAPA)                                    

Right.

 

(DR. PETER SALGO)                                  

— and too big, it’s other metabolic issues, right?

 

(DR. LOU PAPA)                                    

Right.  Right.

 

(DR. PETER SALGO)                                  

Okay.  Put that one to bed.  They didn’t do it, or at least it’s not here in my chart.

 

(DR. LOU PAPA)                                    

Just not there.

 

(DR. PETER SALGO)                                  

So now what are you thinking?  What is TGIGA, anyway?

 

(DR. DANIEL LEFFLER)                              

Right.  So TG stands for transglutaminase.  This is also known as TTG, a tissue transglutaminase, because the body holds many different types of transglutaminase and different — doing different things in your body.  IGA refers to the type of antibody it’s looking for.  So, in Celiac diagnostics and in — in many other diagnostic tests for autoimmune diseases, IGA antibodies are — are more accurate than IGG antibodies.  So we look for IGA tissue transglutaminase antibodies.  And these are antibodies that your body makes to transglutaminase, which is a protein your body makes.  So that’s what characterizes —

 

(DR. PETER SALGO)                                  

So —

 

(DR. DANIEL LEFFLER)                              

— this as an autoimmune disease.

 

(DR. PETER SALGO)                                  

Let me see if I hear you right.  You’re looking for antibodies the body is making against itself?

 

(DR. DANIEL LEFFLER)                              

Correct.

 

(DR. PETER SALGO)                                  

That is to say it’s autoimmune, you’re getting immune to —

 

(ALICE)                                 

Right.

 

(DR. PETER SALGO)                                  

— yourself.

 

(DR. JOHN LOONEY)                              

I guess I would characterize it as a hypersensitivity disease, which is also an autoimmune disease.

 

(DR. PETER SALGO)                                  

But we’re — you know, there’s this —

 

(DR. JOHN LOONEY)                              

Because — because you do have the component that you — you have to have this foreign protein there, and that’s actually what helps make it an autoimmune response.

 

(DR. PETER SALGO)                                  

Can I — can I pull back for a minute?

 

(DR. JOHN LOONEY)                              

For sure.

 

(DR. PETER SALGO)                                  

You mentioned Celiac.  You referred to it by a pronoun, it, but nobody has defined it. 

 

(DR. DANIEL LEFFLER)                              

Gluten is the — the main protein found in wheat products.  There’s related proteins in rye and barley and smelt and other similar, related grains that go by other names but are basically the same.  In the body, they get — they’re poorly digested.  These are really tough proteins.  That’s part of what gives bread that nice chewy texture we all like, is that it doesn’t digest well.  It holds up well to cooking and other things.  It also holds up well in the intestine.  So it gets to the intestine in big chunks, and in the intestine it can actually get through the wall somehow.  And that’s where this TG, this tissue transglutaminase first takes effect.  Gluten, even in people with Celiac disease, unless it’s been changed by tissue transglutaminase, is not harmful.  It doesn’t react in the — in — quite well enough with the white blood cells in your body to stimulate this inflammatory reaction.  Tissue transglutaminase binds to gluten and changes it, and once it does that it’s like a key and a lock, and that fits in the white blood cells and stimulates this aggressive autoimmune inflammatory reaction that can destroy the intestine as — and almost any other part of the body.

 

(DR. PETER SALGO)                                  

Okay.  Now, this is what I’ve heard for the first time.

 

(ALICE)                                 

So in a —

 

(DR. PETER SALGO)                                  

I’m sorry.

 

(ALICE)                                 

In a layperson’s term — terminology, basically wheat, rye and barley, so bread, pasta, the foods that we commonly eat are poison to somebody that has Celiac disease.  So I have Celiac.  It’s poison to me.  So I eat those products, it sets off an autoimmune —

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(ALICE)                                 

— reaction. 

 

(DR. PETER SALGO)                                  

How bad is Celiac disease?  He’s bloated.  He’s losing a little weight.  He has diarrhea.  So what?

 

(DR. JOHN LOONEY)                              

Potentially fatal.  The original description was — was kids dying of — of — of this bloating malabsorptive disease.  It was — it was a fatal disease, and it is, in a small percentage of people, severe enough that it can cause death, if it’s not properly treated.

 

(Simultaneous speech).

 

(DR. PETER SALGO)                                  

Lymphoma?

 

(ALICE)                                 

It can cause lymphoma.

 

(DR. LOU PAPA)                                    

Right, it’s associated with malignancies.  Yep.

 

(ALICE)                                 

Yeah, malignancies, and I ended up seeing twenty-two doctors before I was diagnosed, but in my case I also had reproductive health issues.  So when you say how can it affect you, I had a full-term stillborn child, I had three miscarriages, and my youngest daughter was two pounds when she was born.  So she fit into the palm of my hand.  I’m five foot nine and I weighed a hundred and thirty pounds now.  I was down to about a hundred pounds.

 

(DR. JOHN LOONEY)                              

Mm-hmm.

 

(ALICE)                                 

My hair was falling out, my teeth were breaking, and the doctors were telling me that I had postpartum depression and telling me I had psychiatric problems, you name it, anemia, so a lot of this — I had, you know, swelling in my joints.  I had such diarrhea that I couldn’t even go to work.

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(ALICE)                                 

So I — I feel for this guy.

 

(DR. PETER SALGO)                                  

How many people in this country have Celiac disease?

 

(ALICE)                                 

Three million people.  It’s one percent —

 

(DR. PETER SALGO)                                  

Three million that we know of?

 

(ALICE)                                 

Three — one to two percent of the population have Celiac disease, but most are undiagnosed.  So —

 

(DR. DANIEL LEFFLER)                              

We are — we are far behind the rest of the developed countries in our rate of diagnosis of Celiac disease.  Other countries have twenty-five, thirty percent of people diagnosed.

 

(DR. PETER SALGO)                                  

If your numbers are correct, and if your numbers are correct, we all know people with Celiac disease.

 

(ALICE)                                 

Anybody can get it.

 

(DR. DANIEL LEFFLER)                              

Right.

 

(DR. PETER SALGO)                                  

But who — what — what are the risk factors for if?

 

(DR. JOHN LOONEY)                              

Genetics are a big part of it.  There are certain genes that make you susceptible to Celiac disease, and — and some of them are involved in — in transplantation genes.  So people can — there is a — there’s a — there is tissue typing that can be helpful in some — some — some cases.

 

(ALICE)                                 

But —

 

(DR. PETER SALGO)                                  

But what about diabetes?  That predispose you to it?

 

(DR. DANIEL LEFFLER)                              

Yeah.  So other autoimmune diseases go along with it.  So if you have thyroid disease, if you have (( )) —

 

(DR. PETER SALGO)                                  

--- function here was abnormal.

 

(DR. DANIEL LEFFLER)                              

Right.  So that would be — they often go hand in hand.  If you have Type 1 diabetes, other disorders, such as Down’s syndrome have — have a high risk of it, but really almost anyone’s at risk for it, and you — no matter what your specialty is as a physician, no matter what your symptom is, if it’s unexplained, Celiac disease is a potential cause because it’s such a — it’s just such a chameleon in how it can present.

 

(DR. PETER SALGO)                                  

So let me — can we nail this?  Does Gary have Celiac disease based on this lab finding?

 

(DR. DANIEL LEFFLER)                              

You cannot — currently, you do — we do not diagnose to have Celiac disease definitively without an intestinal biopsy, but based on that very high titter antibody transglutaminase, that IGA TG, he has a very high likelihood.  He’s above ninety-five percent.

 

(DR. PETER SALGO)                                  

Can we finish beating up on Gary’s doctor?  Did he miss it?  Was this a problem?

 

(DR. LOU PAPA)                                    

Mm-hmm.

 

(DR. PETER SALGO)                                  

Should he have — should he have spotted this?

 

(DR. LOU PAPA)                                    

But I — I think he missed it.  I think part of it comes down to the misconception about this.  When I was in medical school, which I don’t think was that long ago —

 

(DR. PETER SALGO)                                  

Your kids might disagree.

 

(DR. LOU PAPA)                                    

Right.  We were told one in a million.

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(ALICE)

Well —

 

(DR. LOU PAPA)                                    

One in a million.

 

(ALICE)                                 

And that was exactly — when I — when I went to my gastroenterologist —

 

(DR. LOU PAPA)                                    

Yep.

 

(ALICE)                                 

— it was — it was interesting.  This was doctor number twenty-three, mind you.  He — he said, “Well, all right.  We’ll run this test.”

 

(DR. LOU PAPA)                                    

Right.

 

(ALICE)                                 

And I remember exactly how he presented it to me.  He said, “We’ll run the test, but it’s a rare disease of childhood.  You’re too tall.”  And I was like, “Well, what is the test?”

 

(DR. LOU PAPA)                                    

Right.

 

(ALICE)                                 

He said, “It’s a blood test.”  I’m like, “It’s a blood test?  You’ve done every test known to man here.  Like, I’ve had scopes everywhere.  Please, just give me that blood test.”

 

(DR. LOU PAPA)                                    

And I think one of the pluses is the — the — the advent of the — the blood test makes it so much easier and, quite honestly, cost-effective to evaluate people where there’s a high clinical suspicion that they could have it or they’re at risk for it.  And so a lot of these blood tests, you know, that in people’s mind it’s just a blood test, very often can — it can start a cascade of additional testing.  That could put the patient in harm.  You’re talking about invasive tests.

 

(ALICE)                                 

Right.

 

(DR. LOU PAPA)                                    

So even though it’s just a blood test, its false positive rate is concerning.  That can start this cascade of work-up, and that was one of the problems before that.  It had a very high false positive rate especially with the older generation of testing.

 

(DR. PETER SALGO)                                  

Now, again, you — you told us that the — the gold standard really is, blood test notwithstanding, go ahead and do an endoscopy —

 

(DR. DANIEL LEFFLER)                              

Mm-hmm.

 

(DR. PETER SALGO)                                  

— which is go look at the colon, right, with a scope.

 

(DR. DANIEL LEFFLER)                              

The — the small intestine actually and —

 

(DR. PETER SALGO)                                  

The small intestine.

 

(DR. DANIEL LEFFLER)                              

An upper endoscopy, so we’re going through the mouth into — past the stomach, into the small intestine.  Actually much easier than a colonoscopy because you don’t have to do a prep, and it’s a five-minute procedure. 

 

(DR. PETER SALGO)                                  

Okay.  And you brought some pictures?

 

(DR. DANIEL LEFFLER)                              

Yes.  So here we have two pictures of the intestine.  This is actually the same patient, before diagnosis of Celiac disease and about a year and a half after treatment.  And in the picture on your left, we see the scalloping, a mosaic pattern, nodularity, and this is an intestine that’s diseased with Celiac disease.  On your right, you see the picture that’s a smooth, nice, velveteen mucosa, and basically what you’re looking at here is this is the — the damaged intestine, pre-Celiac disease.  It’s almost like if you took your rug in your living room and shaved off all the rug part and looked at the little ridges underneath.  The villi, and we’ll see those in the next picture, are like fingers sticking up on the intestine, and greatly increase the absorptive capacity of your intestine.  It’s also where all the enzymes for digestion lie.

 

(DR. PETER SALGO)                                  

That’s where the action is, it’s in the villi.

 

(DR. DANIEL LEFFLER)                              

Yes.  And here’s — here’s what that looks like under the microscope.  So, on the top, you see a nice, normal intestine.  Looking down you see all those finger-like projections.  And on the cross-sectional picture, on your right, you see again the villi, the finger-like projections.  They’re nice and long.  They look healthy.  Lots of area to absorb.  But lower we see an intestine that’s damaged with Celiac disease, and you see those are totally stripped away.  It’s like a lawnmower came and just took off all those villi.  And you can imagine when you have an intestine like that, it’s not going to absorb the nutrients you need.  You’re going to have weight loss.  You’re going to have diarrhea.  You’re going to have abdominal pain and bloating, and also with that chronic inflammation, you increase your risk of cancers, like lymphomas and other — and — and other malignancies.  So this is really a big deal.

 

(DR. PETER SALGO)                                  

Yeah, it’s — it’s a big deal.  Great pictures, by the way.

 

(ALICE)                                 

Yeah, it’s just not just a stomachache.

 

(DR. LOU PAPA)                                    

But it’s interesting — it’s interesting under endoscopy, at least to my eye.  I’m not a gastroenterologist.  Other than lighting, I’m sure the viewers looked at it and say, “They don’t — that doesn’t look that much different.”  You could blow right by that, if you don’t have that clinical suspicion.

 

(DR. DANIEL LEFFLER)                              

No, I agree.  And actually even — even in people with real Celiac disease, only about thirty percent of people have intestinal damage severe enough to see that kind of picture.  So, you know, you’re doing all the work of the endoscopy.  It takes thirty extra seconds to go in and take six biopsies of different parts of the small intestine, and that’s really what we have to do.  And again, like anything, there’s no medical test that is perfectly specific, so there are other causes of this type of intestinal damage beyond Celiac disease, and that’s why you have to take the blood test and you have to take the history and you have to put it all together to make a clinical diagnosis.

 

(DR. PETER SALGO)                                  

And this malabsorption, because all the action is on these villi —

 

(ALICE)                                 

Right.

 

(DR. PETER SALGO)                                  

— if the villi do this and they’re all gone —

 

(ALICE)                                 

You’re not absorbing (( )) —

 

(DR. PETER SALGO)                                  

— you’re not absorbing your food —

 

(ALICE)                                 

Nope.

 

(DR. PETER SALGO)                                  

— you’re not absorbing vitamins.

 

(DR. DANIEL LEFFLER)                              

Right.

 

(DR. PETER SALGO)                                  

Lot’s of other organs get damaged, because they all depend on the gut to get food.

 

(ALICE)                                 

Yeah, your body goes haywire and it causes this —

 

(DR. DANIEL LEFFLER)                              

Yes.

 

(ALICE)                                 

— multi-symptom chameleon disease as Dan was saying.  You know, so in one person it manifests itself in one way and then somebody else has an entirely different set of symptoms.  So it may not be so easy to diagnose.  Yet it is one of the most common autoimmune diseases.

 

(DR. PETER SALGO)                                  

So let’s pause for just a moment and kind of sum up what we’ve seen so far.  Celiac disease is a digestive condition triggered by eating the protein gluten.  It’s often not diagnosed.  It’s often misdiagnosed, because the symptoms can vary greatly, and you can understand that because the symptoms relate to organ systems allover the body, not just in the gut.  Our patient that we’re considering today is Gary, if you recall, and his blood tests suggest that he has Celiac disease, and I can now tell you that he did have an endoscopy and his diagnosis, in the view of his doctors, was confirmed.  The blood test, plus the biopsy, Celiac disease.  The obvious question now is so what?  Is there a cure?

 

(DR. JOHN LOONEY)                              

No.

 

(DR. PETER SALGO)                                  

Thanks a lot.

 

(DR. JOHN LOONEY)                              

But there’s treatment.

 

(ALICE)                                 

There is — there is great —

 

(DR. LOU PAPA)                                    

There’s very effective treatment.

 

(ALICE)                                 

Very effective treatment.

 

(DR. PETER SALGO)                                  

Okay.

 

(ALICE)                                 

And I’m — I’m a testimony to that.

 

(DR. PETER SALGO)                                  

How do you treat it?

 

(DR. LOU PAPA)                                    

Very few conditions that you can treat successfully with diet alone.

 

(ALICE)                                 

Gluten-free diet.

 

(DR. PETER SALGO)                                  

Okay.  Now —

 

(ALICE)                                 

You cut the wheat, rye and barley out of your diet. 

 

(DR. DANIEL LEFFLER)                              

I don’t want to make that sound easy.

 

(DR. PETER SALGO)                                  

I was about to say —

 

(ALICE)                                 

Okay.  Okay.  Okay. 

 

(DR. PETER SALGO)                                  

— this is a lot easier —

 

(DR. LOU PAPA)                                    

It’s hard.

 

(DR. PETER SALGO)                                  

— to say than to do.  You’re telling me oats, rye, barley, bread, cake.  Start telling me what I can eat. 

 

(ALICE)                                 

Shop the perimeter of your supermarket.  You walk around that supermarket perimeter and guess what you have?  You have vegetables.  You have fruits.  You have meat, milk.  Anything that’s natural, that’s not in the center of that supermarket, you most likely can have.

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(DR. DANIEL LEFFLER)                              

That’s — and the gluten-free diet can be very, very healthy when it’s done correctly, but it has to be done with expert nutritional guidance.  The immune system is built to be very reactive.  You know, just like in an infection, you don’t wait — it doesn’t wait for tons of bacteria before it starts attacking, because then you’d — everyone would get sick.  It’s the same with gluten.  A milligram, you know, crumbs of gluten are enough to set off this reaction.

 

(DR. PETER SALGO)                                  

That’s what I wanted to ask.  When you first started trying to maintain a gluten-free diet how hard was it?

 

(ALICE)                                 

This was seventeen years ago and it was difficult.  I had to order my food from Canada, but the change in the past five years has been tremendous.  I mean, go to your local grocery store and there’s gluten-free products right there on the shelves.

 

(DR. PETER SALGO)                                  

Yeah, but, you know, let — let me — let me go into cynical mode —

 

(ALICE)                                 

Okay.

 

(DR. PETER SALGO)                                  

— just for a minute.  I see all these gluten-free products out there.  Manufacturers have jacked up the price.

 

(DR. JOHN LOONEY)                              

Yeah.

 

(ALICE)                                 

Yep.

 

(DR. PETER SALGO)                                  

It’s expensive.  They’re making a fortune.

 

(ALICE)                                 

Yeah.  Oh, yeah.

 

(DR. PETER SALGO)                                  

Now everything is gluten-free. 

 

(ALICE)                                 

Right.  Well —

 

(DR. PETER SALGO)                                  

Just how much of this is hype?

 

(ALICE)                                 

Well, there’s — there is —

 

(DR. PETER SALGO)                                  

How much of this is everybody should be eating gluten-free because we want to make a lot of money off an unsuspecting public and how much is real?

 

(ALICE)                                 

We know that one percent of the population has to be on a gluten-free diet.  Now, there’s this other percentage of the population, as you were talking about, is gluten-sensitive.  So what percentage of that — the population is gluten-sensitive, and they’re saying about ten million people need to be on a gluten-free diet.

 

(DR. PETER SALGO)                                  

There — there’s this great big they, I guess, is what I’m hearing.

 

(DR. LOU PAPA)                                    

Yeah.

 

(DR. PETER SALGO)                                  

There’s always a they.

 

(DR. LOU PAPA)                                    

Unfortunately, the gluten enteropathy and — and Celiac disease is getting lumped in because it’s a diet-specific disease with all the other diet crap.

 

(DR. PETER SALGO)                                  

Mm-hmm.

 

(ALICE)                                 

Right.

 

(DR. LOU PAPA)                                    

Because there’s a lot of diet hype out there because there’s money to be made.  This is not, you know, the — you know, the — the carb phenomena or the — you know, the grapefruit phenomena.  It’s getting lumped in because it’s seen as another diet situation, whereas there’s a real quantifiable disease.

 

(DR. PETER SALGO)                                  

All right.  Let me turn this on its head.

 

(DR. LOU PAPA)                                    

Sure.

 

(DR. PETER SALGO)                                  

If there’s all this gluten-free food, why make the diagnosis at all?  If somebody’s having symptoms and you don’t want to go through an endoscopy and you don’t want all these blood tests and —

 

(DR. DANIEL LEFFLER)                              

So this is one of the most common problems we run into in — in clinic is people saying, you know, “I wasn’t sure.  I — my neighbor was — was diagnosed I started to try it and I feel good, and now what do I have to do?”  The problem with Celiac disease is because the treatment’s so successful, once somebody’s on a gluten-free diet, you can’t tell if they have Celiac disease anymore or not, because things in general heal well enough.  And once they’ve done that, it’s really difficult to get them to go back on a regular diet and make the diagnosis.

 

(DR. PETER SALGO)                                  

All right.  But let me — let me stop you and I’ll ask the classic question.

 

(DR. LOU PAPA)                                    

Yes.

 

(DR. PETER SALGO)                                  

So what?

 

(DR.                                        

Right.

 

(DR. PETER SALGO)                                  

You’re going to put them on a gluten-free diet anyway. 

 

(DR. LOU PAPA)                                    

Because the —

 

(DR. PETER SALGO)                                  

What’s the difference?

 

(DR. LOU PAPA)                                    

The problem is that gluten’s hard to digest.  Everybody feels better on a gluten-free diet.  And the —

 

(DR. PETER SALGO)                                  

So why don’t we all just do it?

 

(DR. LOU PAPA)                                    

The problem is this has other implications.

 

(DR. PETER SALGO)                                  

Okay.

 

(DR. LOU PAPA)                                    

Because it’s — it’s a hereditary disease. 

 

(DR. PETER SALGO)                                  

Let’s just pause for just a minute figure out where we are, sum up some things, all right?  It is important to your overall health that you get a diagnosis of Celiac disease, if you have it, because you’re going to receive better medical care if your doctor knows you have Celiac disease, and that includes your family and all the genetic implications of all of this.  Is that — that fair?

 

(ALICE)                                 

Right.

 

(DR. PETER SALGO)                                  

Gary has been on a strict, and I mean strict, according to the chart, gluten-free diet for a year and a half.  His symptoms have mostly all gone away, but has he done irreversible damage to himself during those years when he missed the — the diagnosis wasn’t made?

 

(DR. DANIEL LEFFLER)                              

Classically no.  So, again, Celiac disease is a reversible illness, once you go on the gluten-free diet.  That’s what we’ve — that’s — in general, that’s — that’s very true.  And the — the problem is that that’s — that’s not true for everyone, and the later you get diagnosed and the longer you’ve been undiagnosed, the harder it is to get your intestines back to normal, and this is the same for any disease.  The older you are and the more other comorbidities you have when you get diagnosed, the longer it takes.  So for — for adults, what we see is really, at — at best, half of them will get their intestine all the way back to normal.  Most will get mostly back to normal but not all the way.  There has at least been some very interesting data that the longer you have untreated Celiac disease the more likely are — you are to develop other autoimmune diseases.  Just like — the immune system’s revved up just like it’s going — it has a high risk involving things like lymphoma or cancers.  It has a high risk of turning on other parts of the body, and it — so it seems like, in some studies, that if you start — if you diagnose Celiac disease early, people are less likely to wind up with thyroid disease and other things down the road.

 

(DR. JOHN LOONEY)                              

And the controversy is that, you know, the — the same genetics that predispose you to Celiac disease also predispose you to a lot of other autoimmune diseases.

 

(ALICE)                                 

Two weeks after I went on the gluten-free diet, that brain fog that I had went away.  I felt like a new person, you know, and, you know, started to really restore my health and reclaim my life back.

 

(DR. PETER SALGO)                                  

And with that, I’ve got to tell you, that’s all the time we’ve got. 

 

(ALICE)                                 

Okay.

 

(DR. PETER SALGO)                                  

Not a bad place to end, though.  You’re feeling better, he’s feeling better, and we have a disease that we can actually treat.  Unfortunately, we are out of time, but you can continue this conversation on our Web site, which is Second Opinion dash TV dot O-R-G, dot org, where you’ll find transcripts, videos, more about Celiac disease and other healthcare topics.  I want to thank you for watching, thank this tremendous panel, a great discussion.  Great pictures, too.  Thank you for bringing them.

 

(ALICE)                                 

Thank you, Peter.

 

(DR. PETER SALGO)                                  

I’m Dr. Peter Salgo, and we’ll see you next time for another Second Opinion.

 

(MUSIC)

 

(ANNOUNCER)                   

Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association; an association of independent, locally-operated and community-based Blue Cross and Blue Shield plans, supporting solutions that make quality, affordable healthcare available to all Americans.

 

(ANNOUNCER)                   

Second Opinion is produced in association with the University of Rochester Medical Center, Rochester, New York.