Celiac Disease vs Gluten Sensitivity vs Wheat Allergy with Dr. Claire Jansson-Knodell

Podcast Transcript

John Horton:

Hello and welcome to another Health Essentials Podcast. I'm John Horton, your host.

If eating foods with gluten gives you a serious bellyache, you might be dealing with celiac disease. Of course, GI issues from gluten could also signal a sensitivity or maybe even a wheat allergy. The truth is, any of those conditions could be a reason to remove wheat and other grains from your diet.

Confused? Yeah, a lot of people are when it comes to gluten-based issues. That's why we asked gastroenterologist Claire Jansson-Knodell to join us today to help clear things up. She's one of the many experts at Cleveland Clinic who pop into our weekly podcast to talk health. So with that, let's find out how three completely different conditions share such similar symptoms and why it's important to know which is which.

Welcome back to the podcast, Dr. Jansson-Knodell. Thanks for stepping away from the clinic for a few minutes to chat.

Dr. Claire Jansson-Knodell:

Delighted to be back here again.

John Horton:

Well, we're always glad to have you in. And today, you're here to break down three very different conditions that share a serious dislike for gluten. Let's kind of start big picture and just broadly define those three, which are celiac disease, non-celiac gluten sensitivity and wheat allergy.

Dr. Claire Jansson-Knodell:

Celiac disease is a small intestine disorder where your body has an immune-mediated reaction to gluten. Non-celiac gluten sensitivity is where a person reacts poorly to gluten and can have a whole range of symptoms, but it's not as damaging as celiac disease is.

John Horton:

OK.

Dr. Claire Jansson-Knodell:

And wheat allergy is kind of totally different. It's an IgE-mediated reaction where, after eating or even inhaling, kind of being exposed to gluten, a person can have negative effects.

John Horton:

So it sounds like in all three cases, it's not great for your body, but your body's just responding in different ways to each one.

Dr. Claire Jansson-Knodell:

Definitely. There's a wide range of responses with all three.

John Horton:

All right. Well, let's break those down a little bit more here. And we'll kind of start by looking at celiac disease and non-celiac gluten sensitivity, which, thankfully, also shortens to NCGS. And I know those two are often confused by people. And in looking at the symptoms, it's really easy to see why.

Dr. Claire Jansson-Knodell:

There's a lot of overlap between the symptoms and the two conditions. And one is not necessarily worse than the other or better than the other. The biggest distinction is that in celiac disease, gluten is causing damage to your small intestine and is harming your body. Whereas in non-celiac gluten sensitivity, there's no damage that's occurring. Eating gluten definitely makes you feel poorly, but it's not physically harming your body in the same way that it does in celiac disease.

John Horton:

Yeah. It sounds like celiac is much more, like you said … you're getting that harmful effect. You're actually … you're having … a piece of you is getting hurt, for lack of a better word.

Dr. Claire Jansson-Knodell:

But this doesn't really reflect the severity of symptoms that people can have. People can have really extreme symptoms with non-celiac gluten sensitivity, and people can have really mild symptoms with celiac disease. Every individual patient is a little bit different.

John Horton:

Let's go over some of those symptoms. I mean, what kind of things are you going to experience if you have either celiac or the sensitivity?

Dr. Claire Jansson-Knodell:

So many different symptoms are possible with either one. In celiac disease, some of the more classic symptoms are those related to malabsorption in the small intestine. So things like diarrhea, weight loss. In children, poor growth, vitamin and nutritional deficiencies, that type of thing. But there can also be other gastrointestinal symptoms, like abdominal pain or cramping, nausea or vomiting. And there can be extraintestinal manifestations of celiac disease as well. Things like headache or neuropathy, elevated liver biochemistries and iron deficiency anemia, to name a few.

John Horton:

None of that sounds very pleasant.

Dr. Claire Jansson-Knodell:

No, it's pretty tough to have celiac disease. But we also have a subgroup of patients with celiac disease who really don't have many symptoms at all or were even diagnosed with celiac disease because they were tested for maybe a family member having celiac disease or were tested because they have an associated condition like thyroid disease or type one diabetes, and they weren't actually have any symptoms of celiac disease.

John Horton:

Wow. So I mean, you could have celiac and not have any of those classic symptoms, which I think everyone kind of goes to the GI, you'd mentioned the bloating and gas and things like that. You can have celiac and have none of those, kind of, appear?

Dr. Claire Jansson-Knodell:

Correct. Correct. And in some patients, we may find that they initially say, “I don't really have much in terms of symptoms at all,” but talking to them more after they start a gluten-free diet, they're like, "Wow, I didn't really realize my abdomen was hurting all the time. I feel really good now. I have lots of energy now. My bowel habits are pretty regular now." Something that they might not necessarily have detected as being an issue, they realize, improves greatly on a gluten-free diet.

John Horton:

Yeah. Well, that's got to be really difficult because, as you mentioned, celiac is the one where if you have it and you're eating foods with gluten, I mean, you're doing damage to your small intestine. So I'd imagine if that goes unnoticed for too long, you could really develop some issues.

Dr. Claire Jansson-Knodell:

Definitely. The big ones that we watch out for and monitor for after someone is diagnosed with celiac disease are those related to their nutritional status, vitamin and mineral deficiencies. Iron is the common one. And then, we often think about their bone health, too, and even do a DEXA scan to measure their bone strength after they're diagnosed.

John Horton:

So if you're somebody, and you're kind of back and forth on whether you have celiac or maybe a sensitivity, if you are experiencing some of these symptoms and they're not kind of hidden, how do you tell those apart?

Dr. Claire Jansson-Knodell:

There's no great way to tell things apart just based on symptoms alone, which is why we do a series of tests in order to figure out if someone has celiac disease or if they have non-celiac gluten sensitivity.

So the tests that we do to investigate for celiac disease. It's a combination of two tests. One is a blood test looking for the tissue transglutaminase IgA antibody. And the other is a biopsy of the small intestine, looking for that characteristic damage from gluten.

John Horton:

And I'd imagine it is really important to figure that out just because, as you said, if you have celiac, you could be really doing some harm to your small intestine.

Dr. Claire Jansson-Knodell:

Exactly. It's important to know because then we have to start patients on treatment. We have to monitor them carefully and do some additional health maintenance things, as well as follow them up over time longitudinally.

John Horton:

Now, how does somebody go years and years and years and maybe not get tested for one of those? It seems like if you're having these sorts of GI issues and things like that, that you would notice. Or do people just kind of chalk it up to, "I had a bad taco or something just didn't agree with me."

Dr. Claire Jansson-Knodell:

Every patient is a little bit different. Some patients are more aware of their symptoms than others. We definitely have people who have been searching for an answer for their symptoms for years and years before they've actually gotten tested for celiac disease. And then, we have a whole other group of patients who really have kind of ignored things for a while or didn't realize that there was something that wasn't making them feel too good. Everyone's a little bit different.

John Horton:

Now, when you're comparing celiac and the sensitivity, I mean, is the main difference just in how your body's reacting to it, or are there some differences or even slight differences you might see just in how you experience them?

Dr. Claire Jansson-Knodell:

Really, a patient can have a whole range of symptoms with either one, but in non-celiac gluten sensitivity, a person is testing negative for celiac disease. So they've undergone an evaluation where either their tissue transglutaminase IgA antibody is normal or their small intestine biopsy is normal or both. So, it's kind of like this diagnosis of exclusion. We do have a technical criteria that we use for it, but it's not super practical.

John Horton:

So basically, you find out, “Hey, gluten is causing you trouble, you don't have celiac, so it's probably, then, a sensitivity.”

Dr. Claire Jansson-Knodell:

Right. For a technical definition for non-celiac gluten sensitivity, we say six to eight weeks on a gluten-free diet with improvement in symptoms, and then one to two weeks with a gluten reintroduction, where you have significant worsening of symptoms. And if you meet those Salerno Criteria, you have a diagnosis of non-celiac gluten sensitivity.

John Horton:

Well, and then to make things even more complicated, because this already sounds difficult, so we should throw another wrench in there, there is that third option, which would be a wheat allergy, which can also lead to some gluten-related trouble. How does that differ from the other two, and symptoms and just overall effect?

Dr. Claire Jansson-Knodell:

That's a great question. So wheat allergy can also have some GI symptoms, some abdominal pain, vomiting, nausea, that type of thing. But other symptoms predominate that are related to the respiratory tract and are things like nasal itching, swelling, wheezing, and then skin manifestations, like hives. Those can be more common in wheat allergy.

John Horton:

Yeah. Kind of classic allergic reactions that people think about when you come across anything that you're allergic to.

Dr. Claire Jansson-Knodell:

Correct. People with wheat allergy can also experience anaphylaxis and require an EpiPen®.

John Horton:

All right. That is a big difference. And you said in celiac and the sensitivity, you're not going to have those sorts of breathing issues or the rashes or things like that. So it sounds like that's the real big thing to differentiate.

Dr. Claire Jansson-Knodell:

Well, to throw a little bit of a wrench into that, with celiac disease, you can have a classic skin rash called “dermatitis herpetiformis,” which is typically a small red, raised, itchy rash, very itchy rash. That's usually located on the elbows, knees, buttocks area. And then, in non-celiac gluten sensitivity, people can also have rashes on the skin in a variety of different locations, but these are [inaudible 00:10:58]-

John Horton:

…because it just couldn't be that easy, right?

Dr. Claire Jansson-Knodell:

…it couldn't be that easy, no.

John Horton:

Oh, man. Well, this is why people need to come and see people like you, the doctors, to make sure they can figure out what they've got.

Dr. Claire Jansson-Knodell:

There you go. Exactly. But definitely, with wheat allergy, it's a little more of the classic hives urticaria type reaction.

John Horton:

All right. So out of the three, which is the most common?

Dr. Claire Jansson-Knodell:

Good question. We tend to think that non-celiac gluten sensitivity is probably most common, with a prevalence around about 10%.

John Horton:

10% of all people have it?

Dr. Claire Jansson-Knodell:

10% of all people. But a lot of the data that we have on this, where we look at certain numbers, is kind of based on self-reported symptoms, and it isn't necessarily based on that official Salerno Criteria diagnosis.

John Horton:

Now, how does that compare to celiac disease? If 10% of people have sensitivity, what are you looking at, maybe, for celiac disease?

Dr. Claire Jansson-Knodell:

Celiac disease occurs in about 1% of the population.

John Horton:

So that's a big difference between the two. And then, I take it, wheat allergy is probably the rarest out of the three?

Dr. Claire Jansson-Knodell:

Correct. Wheat allergy is the least common. This is around about 0.2% of the population. More common in childhood than adulthood, and people can outgrow a wheat allergy. Some kids outgrow food allergies around age 12 or so; that can happen with wheat allergy, too.

John Horton:

Well, that is good news if you're experiencing that when you're young.

Now, if somebody is noticing that they're having issues whenever they eat gluten, how do they go about figuring which of these conditions they might be dealing with, and how important is it to get that knowledge?

Dr. Claire Jansson-Knodell:

That's a great question. The first thing that a person should do is talk to their doctor about it. I would not recommend doing anything on your own in terms of limiting gluten, because it really affects the testing that we can do. If you start limiting gluten, you're not going to have the antigen ingested into your body that creates the antibody response in terms of testing for cell-like disease or checking that tissue transglutaminase IgA antibody. So the first step is seek medical attention, but don't change your diet just yet because it could affect your test results.

John Horton:

All right. That's a good tip. So if you're noticing these issues whenever you eat something that has gluten, go see your doctor and just get tested and see what's going on.

Dr. Claire Jansson-Knodell:

Because the long-term effects are really different. Like I mentioned before, there's kind of a whole set of monitoring and clinical follow-up plan that we do for people who have celiac disease that's very structured. Compared to when people are managing non-celiac gluten sensitivity, usually, I'm telling my patients, eat what's making you feel good, limit gluten, but you don't have to take it out entirely. And we monitor over time to make sure that they're not limiting other nutrients in any way or being too restrictive about their diet.

John Horton:

And I know this is late in the game to throw this out, but it just kind of dawned on me, we've been throwing the term “gluten” around a lot, and I think we all use it and we're familiar with it. But I don't know if any of us would pass a quiz if we had to exactly say what gluten is. So can you just kind of, brief thing, just explain what gluten is and where it comes from?

Dr. Claire Jansson-Knodell:

Yes. So gluten is a storage protein that's found in wheat, barley and rye, and it's responsible for giving dough its stretchy or elastic texture.

John Horton:

Well, that was a quick and easy way to do it. I like that.

Now, when it comes to potential treatment for any of these conditions, is there a big difference in your approach or does it just come down to avoiding foods with gluten?

Dr. Claire Jansson-Knodell:

For each of these three areas, it's a bit different. For celiac disease, the treatment is a strict lifelong gluten-free diet. For non-celiac gluten sensitivity, for my patients, I recommend limiting gluten to tolerable amounts. So that means if a person wanted to have a few bites of pizza, a dinner roll at a restaurant, and that didn't cause them symptoms, that would be OK. It's more of an eating to what makes you feel good.

And then, for wheat allergy, definitely avoidance of wheat is important if you have severe symptoms, in terms of eating it. Carrying an EpiPen, if you experience anaphylaxis, of course. And then, if people are having more of the respiratory type symptoms, you might want to avoid environments where there's a lot of wheat or wheat flour, like a bakery, for example.

John Horton:

And just to go back to the issue with celiac disease and avoiding it, I mean, that is, really, something that you have to do to avoid really doing some serious damage to your GI system.

Dr. Claire Jansson-Knodell:

That's correct. One of the older studies that we have out of Italy tells us that for patients with celiac disease, as little as 50 grams of gluten, which is about the size of a dime-sized amount of crumbs, really little, could be enough to cause damage to the small intestine in patients with celiac disease.

John Horton:

Yeah. It's not hard to get a dime-sized thing of crumbs when you're dealing with gluten and everything that it's in.

Dr. Claire Jansson-Knodell:

Definitely. It's really a challenge.

John Horton:

Well, Dr. Jansson-Knodell, you've really laid out these three conditions for us very well. And to be honest, I think now, we'd all be ready if we had to do a pop quiz on these topics. But before you go, what else should we know about gluten-related conditions?

Dr. Claire Jansson-Knodell:

That's a good question. These can be managed by, actually, a lot of different doctors, in terms of the team that might be involved in your care. So in celiac disease, expect it to be a gastroenterologist who will be monitoring you, and probably your primary care doctor. If there are problems with your bone health, you might also see an endocrinologist, and certainly a dietitian with expertise in a gluten-free diet will be a part of the team.

For a patient with non-celiac gluten sensitivity, that may involve all of the physicians and medical team and nutritional teams that I mentioned before, or it might be limited to just your gastroenterologist or just your primary care doctor. And for wheat allergy, an allergist is likely to be involved as well.

John Horton:

All right. And it sounds like, bottom line, though, is if you have any of these conditions, there really are plans available that you can kind of adapt and really work into your day-to-day life in a way where you can kind of enjoy everything that we all do.

Dr. Claire Jansson-Knodell:

Absolutely.

John Horton:

All right. Well, thank you again for breaking this all down for us, and we know where to go if we have any more questions.

Dr. Claire Jansson-Knodell:

Sounds good.

John Horton:

If eating food with gluten makes you feel not so great, it's important to figure out why, whether it's celiac disease, gluten intolerance or a wheat allergy, so that you can put together a plan moving forward. Talk to your healthcare provider to take your next step.

If you liked what you heard today, please hit the subscribe button and leave a comment to share your thoughts. Until next time, be well.

Speaker 3:

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