- Updates on COVID-19
- A New Method for Diagnosing Celiac Disease and Non-Celiac Gluten Sensitivity
- What Causes Non-Celiac Gluten Sensitivity?
- How Non-Celiac Gluten Sensitivity Manifests in Patients
- What to Do If Your Symptoms Don’t Stop after You Go Gluten-Free
- Developments That Dr. Asfour Is Looking Forward to
In this episode, we discuss:
- Updates on COVID-19
- A new method for diagnosing celiac disease and non-celiac gluten sensitivity
- What causes non-celiac gluten sensitivity
- How non-celiac gluten sensitivity manifests in patients
- What to do if your symptoms don’t stop after you go gluten-free
- Developments that Dr. Asfour is looking forward to
- “RHR: Are Lyme Disease and Celiac Disease Connected? with Dr. Ramzi Asfour,” Chris Kresser
- “Everything You Need to Know about Coronavirus, with Dr. Ramzi Asfour,” Chris Kresser
- Novel Coronavirus (COVID-19) Resources, Chris Kresser
- “What Causes Wheat Sensitivity in People Without Celiac Disease?” AGA Journals
- Capsid Consulting: Long Term Care Facilities and Health Clinics
Hey, everybody, Chris Kresser here. Welcome to another episode of Revolution Health Radio. This week, I’m excited to welcome back Dr. Ramzi Asfour as a guest.
Dr. Asfour is a board certified infectious disease and internal medicine doctor. He graduated from New York Medical College and completed an internal medicine residency program at California Pacific Medical Center followed by a fellowship in infectious diseases at UCSD [University of California San Diego]. He’s worked for the World Health Organization, Columbia University in South Africa, and UCSD. Prior to attending medical school, Ramzi majored in genetics at UC Davis [University of California, Davis] and he’s currently assistant clinical professor of medicine at UCSF [University of California, San Francisco].
Ramzi is a colleague at California Center for Functional Medicine, so I’ve had the pleasure of working with him for the past few years, and he’s also been a guest on the show before. We talked about celiac disease and its relationship to a possible connection with Lyme disease and we have also talked about the coronavirus pandemic.
So in this episode, we’re going to do a brief update on coronavirus at the start and then we’re going to finish up the discussion that we started about celiac disease and non-celiac gluten sensitivity. It is a really important topic that there’s a lot of misinformation out there about, so I’m really looking forward to covering this and getting a COVID[-19] update with Dr. Asfour. So, without further ado, I bring you Dr. Ramzi Asfour.
Chris Kresser: Ramzi, it’s such a pleasure to have you back on the show. Thanks for joining me again.
Ramzi Asfour: Thanks, Chris. It’s a pleasure to be back.
Updates on COVID-19
Chris Kresser: So we’re going to talk about part two of the celiac and gluten intolerance podcast that we did a while back. But I want to first begin with some coronavirus updates, because you and I talked about this, it seems like eons ago, right. Back when we did that first show on coronavirus, and a lot has changed since then. And in some ways, a little has changed depending on how you look at it, I suppose. We’re still at home. We’re still, in many places, sheltering in place here in Utah. In Summit County, we’re starting to cautiously emerge. But I know you’ve been talking a lot about this and researching it carefully.
So maybe we could just start by chatting a little bit about some updates. What’s changed since we first talked? How are you looking at this now? Is it any different than when we had that initial conversation? And what are you seeing as the most likely kind of progression of things with the virus over the next several months?
Ramzi Asfour: Right. It’s been very interesting and I’m following this quite closely. And actually, I have a consulting business called Capsid Consulting and we’re working to, we’ve been working in skilled nursing facilities for years. And we’ve been approached by schools and a couple of businesses to help them plan on reopening and reopening safely. So that’s been a fascinating field. And since we last spoke, we’ve shifted toward reopening and how can we reopen businesses safely and keep them open and get the economy working? I think that’s, from a sort of public health perspective, that’s the biggest question at the moment.
Chris Kresser: And schools, too, right? Because that’s part of allowing people to go back to work, is [that] they’re not at home with their kids.
Ramzi Asfour: Absolutely, absolutely. And so that’s a fascinating subject. And a lot of people are trying to wing this and they’re trying to do the best that they can. The public school systems are different from the private school systems. And we’ve been working with a private school in trying to help them reopen, in particular, because the county schools receive direct guidance from counties and their superintendents and the bigger bureaucracy that’s involved and helpful in those situations. But the private schools don’t have that same support. So, but thinking about [that] both my kids go to public school, and hearing what they’re saying from the public school perspective, has been interesting. They have plans, A through Z, which is a little bit overkill.
Chris Kresser: That’s a lot of choices.
Ramzi Asfour: It is. I mean, it’s not quite, I’m totally exaggerating. But, and rightly so. Right? They’re planning for all the contingencies. But I think what we’re advising is cohorting. That means keeping groups of kids with groups of teachers or groups of workers together, if it’s shift work in a different facility.
Chris Kresser: Is that to make contact tracing easier if someone does become infected?
Ramzi Asfour: Also, yes, that’s definitely to make contact tracing easier. But also to make it so that you don’t have to furlough or lay off or go back to home for your entire school or your entire workforce. Because if people are cohorted or grouped, then you can just send that group who did not have contact or did not have high risk contact with others in the organization, you can just send that group back. And it’s quite interesting, actually, to think about it that way so that your school or your business could stay open, because you’ve not had to sort of temporarily suspend operations and you didn’t lose all your workforce all at once.
Chris Kresser: Right. One of the interesting questions about schools reopening is earlier on in this pandemic, the idea was that kids are hardly affected at all. And when they are, the symptoms are extremely mild and the mortality rate and the morbidity rate is extremely low. I think both of those things are still true on a relative basis. But there have been some disturbing reports lately of kids, admittedly still a very small number from an absolute perspective, developing a very severe inflammatory syndrome that’s still not well understood. And also more reports of kids, mostly with pre-existing conditions, but some who haven’t [had those], [who have] been hospitalized. So have you been tracking that? And what are your thoughts on that?
Ramzi Asfour: I have, and that’s one thing that is quite scary. So the syndrome is called Kawasaki disease-like syndrome of the children who are developing these weird rash-like illnesses that you might have read about. In New York, specifically. These were reported in Italy to a small degree. And in China, they were not really known. They were not reported.
So it’s interesting that we’re finding that here; I think it’s likely it also happened in China. But Kawasaki syndrome is an inflammation of blood vessels. And as we’re learning about the coronavirus, it’s affecting the lungs, obviously, but it’s also affecting blood vessels and causing clotting disorders in adults. And so it’s not that surprising that in some children, it’s causing problems with blood vessels, vascular inflammation. And Kawasaki, I’ve actually diagnosed it in a few patients in my career because sometimes we see children; there isn’t a pediatric infectious disease specialist and I’ve seen quite a few kids, and they have a fever and you don’t really know why. And the diagnosis is often made with an ultrasound of the heart, an echocardiogram that you can see abnormalities in blood vessels.
In traditional Kawasaki disease, that’s a disease that doesn’t have a known cause. But the disease syndrome that we’re seeing in children in intensive care units in New York, for example, is similar to severe Kawasaki disease. And some children are dying. So it’s absolutely scary. And the other thing to remember about schools, and there was an article, I didn’t have a chance to do a deep dive into it, that came out I think yesterday about the epidemiological risk factors. While children are not actually getting sick overall in large numbers from coronavirus, noting what we’ve just been talking about, they are thought to play a very significant role in transmission in close context. Think about a kindergarten class, right? They’re sitting on a rug, they’re in front of each other. And I used to say the only thing a child willingly shares with you is their snot, right?
Chris Kresser: Well, any parent knows this intuitively, right? Kids are like little, especially preschool- and kindergarten-age kids, are like perfect little disease vectors.
Ramzi Asfour: Absolutely.
Chris Kresser: And every parent probably has gone through the experience of having an uptick in the number of colds and flus they get when their kid goes from being very young and staying at home to starting to go to preschool or kindergarten. So it shouldn’t surprise us that a similar phenomenon might happen here with coronavirus.
Ramzi Asfour: Yes. I mean and it is scary. And so that applies to my thinking and schools, and how we’re going to make recommendations. Ultimately, it’s up to the schools to decide what they want to do. But it’s complicated to take all this guidance and, you know about the manifestations of the disease, you know how it’s spread. I mean, things like, why do schools need to know about the number of air exchanges per hour in a classroom? That’s something that I do for infection control in nursing homes and hospitals. So we’re trying to share this expertise with some people and we have a white paper that we’ll publish on our website, in a couple of days, and talking about some strategies that you can use. And it’s definitely an interesting experience here, an interesting world.
Chris Kresser: Absolutely.
Ramzi Asfour: And now, I think while we’re talking, the whistleblower is testifying. There’s a whistleblower testifying in front of Congress about the government’s response and how it might not have been, alleging how it might not have been as robust as it should have been.
Chris Kresser: Yeah. Well, regardless, I wrote an email about this a while back, this is in planning and policy, there’s a concept known as a wicked problem, which is a problem that’s difficult or impossible to solve because it’s of incomplete, contradictory, and changing requirements that are often difficult to recognize. And then there’s a related concept from social sciences called a social mess, which is very similar. And it struck me all along with this that Americans in particular love win-win scenarios where you’re choosing between two good options.
One may be slightly better than the other. We don’t do so well with lose-lose scenarios. And I think a lot of the decisions around COVID[-19] are lose-lose decisions. It’s like, if you reopen schools, that’s not just a clear win, because as you’re saying, we could see an increase in infections that could really backfire on us. So we’re often finding that we’re choosing between maybe the least bad alternative, and that’s hard, that’s stressful. It’s not an easy position to be in.
Ramzi Asfour: Absolutely. No, it’s very difficult. It’s tough, it is. We’re in a very difficult situation. And we look at Elon Musk and Tesla’s factory and the arguments there. It’s all challenging, stressful.
Dr. Ramzi Asfour is back on the podcast for more discussion on celiac disease and non-celiac gluten sensitivity, as well as a brief update on COVID-19. Check out this episode of RHR for more. #functionalmedicine #chriskresser
A New Method for Diagnosing Celiac Disease and Non-Celiac Gluten Sensitivity
Chris Kresser: Well, we’ll maybe have you back to do a more dedicated episode on coronavirus in a few weeks. But I want to move on and talk about the topic we had originally planned to speak about before coronavirus hit a few months ago now, which was celiac disease and non-celiac gluten sensitivity, sometimes called non-celiac wheat sensitivity. And we had talked last time about diagnosis. We talked about different ways to go about diagnosis.
So folks who are just hearing this podcast for the first time, make sure to go back and check out that one. But we were chatting before the show, and you wanted to add [a] potentially useful diagnostic method that you’ve been experimenting with. So why don’t we talk about that, and then we’ll skip forward and start talking about non-celiac gluten sensitivity because most of the first show we talked about celiac disease.
Ramzi Asfour: Right, exactly. And so one of the tests that I’ve been using and playing around with, there’s been a couple of studies on using levels of these blood inflammatory markers called interleukins, specifically, interleukin 2 and 8. And you might have heard about that in COVID[-19], because interleukin 6 is also implicated in coronavirus disease. But in celiac, we’re really talking about interleukin 2 and 8. And these are blood tests that you can get with LabCorp or Quest, for example.
And so there has been some published data on using those levels or an increase in those levels over baseline in patients with suspected celiac disease. The problem [is] if you have somebody who’s on a gluten-free diet and feels well on the gluten-free diet, and then they know they feel poorly on wheat, the conventional way to make a diagnosis of celiac disease is give them three weeks minimum of a gluten-containing diet. Some people use six weeks, some people use four weeks, but they might feel miserable during that period. And one way to give a hint if there’s celiac disease, and let me just put a disclaimer in here that this is definitely not proven the way that I’m thinking of using it. But I’m just using it as a piece of evidence that can increase the likelihood of celiac disease in my sort of diagnosis or evaluation of a patient. But I think that a lot of data, and more studies need to be done on this. But what they did was they gave a wheat challenge. And the way I’m doing it is using five grams of vital wheat gluten, and you just make a smoothie of that and you do blood tests at time zero.
So you have them go to the lab. They’re preferably fasting, actually. And then they’ll do a blood test for interleukin 2 and 8 [IL-2 and IL-8]. And then they’ll drink this smoothie that they made containing only water and vital wheat gluten, and then hopefully not eat anything for four hours. And then they’ll come back to the lab for another test. And then they can eat or do whatever they want. So that if there’s a significant increase in IL-2 and IL-8 levels, that makes it likely or that it was more likely that it was celiac disease. So there’s some data on this. But what are the confounders? What if they ate a meal that had a little bit of gluten in it the night before? So this is definitely not diagnostic, but it’s an interesting test that you can do. And hopefully, somebody out there commercializes this type of approach. It’s a little bit hard to commercialize, because these are labs that are available and the product, wheat, or if you use vital wheat gluten is available even in Whole Foods or just about any grocery store.
Chris Kresser: Yeah, that’s fascinating. And I’m all for expanding the diagnostic opportunities, because it’s not always, people sometimes have the idea that celiac [disease] is just kind of black or white and easy to diagnose, and that’s really not the case. So the more options that we have to do it, I think the better.
Ramzi Asfour: Definitely. Definitely.
What Causes Non-Celiac Gluten Sensitivity?
Chris Kresser: Let’s get down to talk about non-celiac gluten sensitivity. So maybe we could even begin with the kind of 30,000-foot view because this is something that bafflingly, to me, at least, still seems to generate controversy in the mainstream media and on social media. There’s still a pretty good chunk of people out there, including journalists, who mock people for saying that they have gluten intolerance if they don’t have celiac [disease]. And the idea is that it’s not evidence-based, and it’s just kind of a made-up condition, which both from my research and I think from yours is provably false or demonstrably false. So what’s your take on that and from your reading of the research and seeing how often this happens in the media?
Ramzi Asfour: Yes, it’s very frustrating. I agree. And people are labeled as sort of, you’re from California or if you’re traveling.
Chris Kresser: Or Boulder[, Colorado].
Ramzi Asfour: Exactly. So it’s tough. People have symptoms and it’s often difficult to say if it’s celiac [disease] or not. But specifically for non-celiac gluten sensitivity, so they don’t have the biopsy. I mean, the real definition would be biopsy, the lack of biopsy proven celiac disease. But not everybody is going to have a biopsy, and by biopsy, I mean a thorough, adequate multi-specimen duodenal biopsy, including the duodenal bulb, which is not always routinely done by all GI [gastrointestinal] doctors. But if somebody has had a complete biopsy, it’s normal, but they still have significant symptoms with gluten, or they don’t.
Alternatively, that’s a severe definition to actually require a biopsy. But alternatively, they don’t have any other manifestation of celiac disease, meaning they also don’t have any manifestation outside of the intestinal system, then it’s probably more likely to be just an intolerance to something in wheat. And there’s different components of the wheat that can cause intolerance. Surprisingly, it’s not generally the gluten itself, although it can be. And so wheat contains a, and sorry, and one of the ways to figure out, for example, if somebody is having non-celiac versus celiac symptoms when they have wheat is to actually give them something called vital wheat gluten, which I mentioned earlier. So if you give somebody vital wheat gluten, that does not have a lot of the more difficult to digest carbohydrates, or FODMAPs, as we call them, sometimes that will cause intolerance.
So sometimes when, especially when people have too much bacteria in their small intestine, we call that small intestinal bacterial overgrowth, if they have a lot of FODMAPs, they will get gas and bloating. And so, to take that out of the equation, if you think that somebody does not have celiac disease, you can try them on some vital wheat gluten through a smoothie like we discussed earlier, and see if they react symptomatically to that. If they don’t have symptoms from that, then it’s probably something else in the wheat that’s bothering them.
Chris Kresser: That could be FODMAPs. But it could also be other proteins in wheat that are not gluten per se. But maybe lectin proteins or glutenin or non-gluten proteins or maybe byproducts of, I guess byproducts of gluten digestion wouldn’t make sense because they would react to that with the vital gluten proteins.
Ramzi Asfour: Right. And so there are all these compounds in wheat. Let’s just talk about the lectin issue for a second. So lectins are plant defense molecules that, I always give the example of nicotine. Everybody knows what nicotine is, and it’s found in the tobacco plant. But evolutionarily, why is nicotine in the tobacco plant? Well, it’s a pesticide. So a bee or another creature will not chomp too much on a tobacco leaf because they’ll get high on nicotine and actually die. And there have actually been pesticides synthesized, called neonicotinoids, for use in commercial agriculture based off of nicotine.
But lectins exist in many forms and they’re plant defense molecules, and they’re usually found in the husk; they’re in higher concentrations in the husk. While gluten has some lectin content, it’s relatively minor compared to what’s in the husk of the wheat. So things like brown bread, or brown rice, for that matter, would have more lectins than white bread or white rice. So that’s why some societies have favored white rice or white bread over others. And in fermenting, making sourdough bread reduces the lectin content further, making it less inflammatory and more digestible. So the lectins are one issue. There are also compounds in wheat that aren’t spoken too much about. They’re called amylase-trypsin inhibitors or ATIs. And gluten-containing grains, especially wheat, have much higher content of ATIs than other grains. And so then there have been studies in mice and actually in humans, too, where you give them some wheat and you measure inflammation afterward. And these are non-celiac people. And you can find that, well, wheat causes inflammation in a lot of people outside of celiac disease. So that’s an issue.
That’s a component that we don’t think about very much. And I’ll give you a reference. You can post that in the notes if you like. But they represent about 4 percent of the total wheat protein and they bind to receptors that are called toll-like receptors on myeloid cells, and they activate a sort of cytokine production. And it’s a very interesting mechanism of wheat causing inflammation. So, when we see patients in Functional Medicine, for example, one of the goals, they come in with a lot of issues and we talked in the last podcast about Lyme disease and celiac and is there a connection? But we also know that wheat is particularly inflammatory. So we usually recommend a grain-free diet. But if people, if that’s very difficult for people, I often recommend at least a wheat-free diet, a gluten-free diet because of the [ATIs], the lectins, the questions around non-celiac gluten sensitivity, and other factors, too.
Chris Kresser: Then we have some of these more newfangled compounds like microbial transglutaminase. Tell us a little bit about that and the role that might play in reactions.
Ramzi Asfour: So this is interesting. And microbial transglutaminase is an additive. So it’s like the, in celiac disease, we’re looking at tissue transglutaminase as one of the enzymes that’s in your intestinal cells. That enzyme is attacked by your immune system in response to gluten. So when we look at a blood test for celiac disease, we’re looking at antibodies to tissue transglutaminase. And this is a slightly different enzyme that’s produced by bacteria, and it’s produced by bacteria in the lab and added to breads including, unfortunately, gluten-free breads, both gluten and gluten-free breads, and it’s not a declared additive, which is the interesting thing.
I’ve been finding out that there’s a lot of things in food that you don’t really understand, especially in the [United States]. Less so in Europe and even less so, and also in China, and I’ll get into that in a second. But what it does is it helps the thing stick together. So you know it helps the bread become gooier or chewier. It gives it that texture. Gluten-free bread often misses that, is lacking that, because gluten is nice and doughy, and so some people add this to gluten-free bread. And another additive is called navitor, which is actually produced by Fleischmann. You might know Fleischmann’s yeast; it’s the same company. And that’s a microbially produced or sort of GMO additive produced from bacteria, [and] because of labeling rules, they can call it a natural product. They don’t have to put a chemical on the food label, which is very interesting and sadly unfortunate that this is the case.
So it’s very interesting. I have a friend who owns a place called Farmer’s Kitchen in the town of Davis in California. And it’s a gluten-free, 100 percent gluten-free facility. And she told me the story and she gave me permission to share it. I thought it was quite interesting. So when, at the time, Walter Robb, who some of you might know. He was one of the co-CEOs of Whole Foods back before Amazon purchased Whole Foods, and he was in her café. He had heard about her bread and was interested in having more gluten-free bread. And he talked about how he had started in Healdsburg in Sonoma County, in California, and they had frozen bread products without additives. So he helped Roseanne, sold Roseanne’s bread in 45 different Whole Foods stores, frozen. So they freeze it because she didn’t add any preservatives to it. And they changed ownerships and he was trying to get the GMOs out of Whole Foods. And he, I think he’s the one that made the pledge to remove all GMOs out of Whole Foods, which they were unfortunately not able to do.
And one of the reasons that they wanted to add additives or his successors wanted to put additives in Roseanne’s bread was that they wanted shelf stability. So they added three different things. And one of them was navitor, this sort of chemical that they can call cultured rice flour, or cultured corn flour, and that’s the name of it. But it’s produced from E. coli [Escherichia coli] from a very, to me at least, opaque, it wasn’t easy to find the mechanism of production. And they’re able to say cultured corn flour, which doesn’t sound bad, right, or cultured rice flour, which also doesn’t sound bad. But it might be bad; it might cause sensitivity for other people. And that’s of concern. So I think that the microbial transglutaminase and other additives can make people more sensitive to gluten. And there’s even some evidence that the microbial transglutaminase can trigger celiac disease when consumed in large or significant quantities.
How Non-Celiac Gluten Sensitivity Manifests in Patients
Chris Kresser: Yeah, so I mean, this is just an example of how there’s more than meets the eye when you just look at this issue on a surface level. Certainly, there’s tons of research even without considering all these other additives and compounds that indicate a wide range of symptoms and pathologies that can occur for certain people when they consume gluten, even those who don’t have celiac [disease]. But when you add up all these other factors, it makes it clear that it’s not just about gluten. It’s about many other compounds, both natural and perhaps unnatural, that are in wheat or wheat-containing products at this point. Let’s talk a little bit more now about how this can manifest in patients. We see a lot of patients who come into the clinic and who don’t know that they have non-celiac gluten sensitivity because they’ve never been tested and they don’t, and even lots of people who don’t know that they have celiac disease, which we talked about in the first show, the high rates of, relatively low rate of diagnosis. So let’s talk a little bit about how this can impact patients.
Ramzi Asfour: Right. I mean, I think, in many ways, we’ve, and you’ve talked a lot on your podcast and your emails about disrupted microbiome. The microbiome that isn’t optimal. So, certainly, if you’re eating things that are causing your microbiome to be disrupted, with things that might be preservatives, or does the microbial transglutaminase affect your microbiome? Do some of these additives cause problems? But does the wheat itself, other than just causing inflammation, how can that present? Well, again, this is the, it can present in a myriad of ways, including:
- Sometimes depression
Any of these symptoms [are] attributable to gut dysfunction. But often, we see a lot of patients coming in that have a pretty complicated illness. They’ve been to multiple doctors and multiple clinics, and they’re coming to see us. And so we have to try to piece together what’s going on.
So one of our first things, and Chris, you’re one of the people that taught me this, too, is, let’s get them on an anti-inflammatory diet that does not include wheat. So get that off the table. And I used to call this the Bermuda Triangle of trying to figure out where the symptoms are coming from. So people have this sort of fatigue, immune dysfunction, maybe joint aches, maybe depression. It manifests differently in everybody. But what are the symptoms? And the Bermuda Triangle is really, I usually put gluten at one end, but it’s really inflammation from food. But gluten being the big bad boy and we being the big bad boy, as we discussed. And then could it be one, and another corner of the triangle could be mold or other toxins contributing, and another end of the triangle could be infections or tick-borne disease or Lyme disease, as we talked about on the last podcast. But I actually add in now, I’ve made that triangle a square; I just haven’t figured out what to call it. The Bermuda Square doesn’t sound very good. So I am adding emotional sort of issues or trauma to that. I think that’s key because whether or not that’s a primary problem, by the time somebody who’s, and everybody that comes to see us obviously, feels unwell.
A lot of people feel well; they just want optimal health. But for those that have seen many other people and don’t feel well, we deal with this. And that emotional piece, it can come as a result of not feeling well for another reason. From celiac disease, [or] from a poor diet. So sometimes just taking, you find out that they have non-celiac gluten sensitivity, [and] you remove, you put them on a reset diet and you slowly reintroduce different foods. And then you figure out well, it’s really the wheat. But you don’t have a high genetic risk for celiac disease. You don’t have any markers for celiac disease, and you don’t have any other things that we can figure out and you feel a lot better off the wheat. So maybe it was just non-celiac gluten sensitivity. And it’s awesome when that happens because that means that they don’t need to be, it’s not a complicated treatment plan. They need to avoid wheat and gluten, but they don’t necessarily need to worry too much about cross-contamination, as a [patient with] celiac [disease] would.
Chris Kresser: Yeah. It’s notable to me, I always discuss this with patients, too. Because oftentimes, when I diagnose them with gluten intolerance, one of the more common responses is but I don’t have any gut symptoms. And we know now from both research and clinical experiences, you’ve just been saying that, in many cases, patients who have or people who have gluten intolerance might not have gut symptoms at all. For some people, the main manifestation is skin rashes, dermatitis, eczema, psoriasis, something like that. For others, it could be depression or cognitive issues. And for still others, it could just be kind of more nonspecific symptoms like fatigue or malaise. So I think that’s one of the reasons that it’s so often missed because most doctors, if they’re not up to speed on this stuff, will not go forward and do any gluten intolerance testing if there aren’t gut symptoms, the classic presentation of someone having diarrhea after they eat gluten. And then, of course, there’s the other issue of what happens if they do go, do testing for gluten intolerance, how accurate is that testing going to be?
Ramzi Asfour: Right. I mean, it’s really not that accurate. It’s really, you really have to just see if their symptoms improve. And it’s really challenging. In fact, last week, I had a patient who had, I diagnosed her with celiac disease. She had the highest blood level. It was over the detectable range of tissue transglutaminase [immunoglobulin A (IgA)].
Chris Kresser: Wow.
Ramzi Asfour: That you can see. It’s the highest. And I mean, I often don’t see it that high. So she had, this was her second visit with me and we started the program with meditation, and she didn’t want to change her diet, so we didn’t change her diet. And she feels much better. She’s doing meditation; she’s quarantined at home, which is why she probably feels better because she was probably doing too many other activities outside. And so now [that] she doesn’t have to do all those activities, she feels better. She’s feeling a lot better. She has no symptoms when she eats gluten. And she feels much better than she did when I first saw her. But now I have to take her off gluten, because it will cause cardiovascular disease; it will increase your risk for cancer and dementia. And it will cause all the things that chronic inflammation can cause. So you want to make sure that whether it’s celiac disease or not, that we’re not causing inflammation in our diet that our bodies cannot handle in whatever way that manifests itself.
Chris Kresser: Well, that just goes to show that there’s so much more to this than just exposure to the antigen or the trigger. And this is true, not only in the case of a trigger like gluten or wheat, but it’s also true in the case of a trigger like an infectious pathogen. And I know you appreciate this as an infectious disease doctor. I often have this conversation with patients where, if we find let’s say, a parasite or H. pylori [Helicobacter pylori] or another pathogenic bacterium on a stool test, the question of how sick they’re going to be, it doesn’t just come down to finding the pathogen or the trigger. It comes down to the interaction or that trigger with the host. And your story about this patient makes that really clear because she didn’t change her diet, wasn’t eating less gluten, and yet she became less symptomatic by essentially probably shifting her immune response to the gluten.
Ramzi Asfour: Right. Right. She was having a, yes. I mean, it’s really hard to understand. But going back to what you said is that the manifestation of a problem that is with something you’re eating isn’t necessarily in the gut. It can be anything. And it can just be increased inflammatory markers in your blood without you knowing it. So that was seemingly the case with this patient. But most people would say you don’t need a biopsy in this patient because her, one, we’re in quarantine right now. Right? And they cancelled all elective procedures, and two, the tissue transglutaminase IgA was super high. So, yeah. But this is the kind of patient in an ideal situation, you want to biopsy, because you can’t tell. You might even want to biopsy after diagnosis and then again, to just make sure that any abnormalities that you saw [have been] resolved because she does not have the symptoms. So that’s, and we wouldn’t do that for non-celiac gluten sensitivity, of course.
What to Do If Your Symptoms Don’t Stop after You Go Gluten-Free
Chris Kresser: Let’s talk a little bit about people who don’t respond even after removing gluten from their diet. Because that’s also I think a lesser known feature of celiac disease is the idea that it’s completely curable and, in many cases, curable in the sense that you can reverse the pathology if you remove gluten from your diet. And for some people, that seems to be true, but not for everybody. So tell us a little bit about that.
Ramzi Asfour: Right. There’s a, so they call this sort of nonresponsive or refractory celiac disease. Some people just call them slow responders and 10 percent of patients fail to heal. And by healing, we mean on biopsy studies. So to make sure that the abnormalities that you see, which are in celiac disease, you see flattening of the villi. And villi are these projections. You can think of them as triangular-like projections, or pyramidal-like projections in the intestine that are there just to increase the surface area of the gut so that you can absorb more food per meter, if you will, or per centimeter of intestine. And in celiac disease, those get blunted, and you don’t have those nice finger-like projections.
So you want to make sure that those come back, and they can do a biopsy to check. And some fail to respond, and why is that? So let’s talk about the diet in celiac disease and how you manage it. So I’m a believer in having a life and eating out when you can once in a while, and being able to travel if you have celiac disease. But I think that what I call insidious cross-contamination is more of a problem than people realize. So what I mean by that is if you’re living in a household and you’re a patient [with celiac disease], if you’re living in a household where there’s gluten, you’re likely to get cross-contamination. And for example, my sister, who’s a chef, [was] super careful, [and] had one little area in her kitchen for gluten, because her daughter has celiac disease. And eventually, for a long story, but anyway, she removed that area of gluten and her daughter started playing soccer and she was very fatigued and wasn’t sort of a kind of a couch potato person. And now she’s much more, she’s the same person, but she’s more active. She played on the soccer team. She went from being a couch potato to being willing and having the energy to play on a soccer team by removing the gluten. And this is in the house where my sister who does all the cooking, she’s a chef, [and] she’s super careful about gluten cross-contamination.
So my belief, and I might be too strict here, but I don’t think so. And I think there’s different sensitivities in different [patients with] celiac [disease]. But for most of the patients [with celiac disease] that I see, I really encourage them to live in a 100 percent gluten-free household. And so I’ve told college students to move out of shared spaces; I’ve written letters to universities saying to let them opt out and get the refund back of the meal plans at the shared cafeteria. There are six universities that have dedicated gluten-free cafeterias including Boston University, as one off the top of my head; that’s where I hope my daughter goes to school because she has celiac disease and I don’t want her eating in a shared cafeteria where they have gluten.
I want a dedicated gluten-free facility so that when you want to go out once in a while or you want to travel, you’ve got a really good baseline of health. You’re not getting every day, a little bit of gluten from here, a little bit of gluten from there. You’re not getting much or any at all on a daily basis. And so that maybe you can handle some cross-contamination when you go out. You still need to be really careful when you go out. But you can’t always eat in a 100 percent dedicated gluten-free facility. So that’s kind of my take. And on these patients who don’t respond, they’re at risk for bone disease and cardiovascular disease and malabsorption of nutrients, [vitamin] B12 deficiency, other things. So you really want to tighten up on the gluten cross-contamination.
Chris Kresser: Yeah, that’s something that can be challenging to do but necessary for some people, as you pointed out. What about for somebody who’s got non-celiac gluten sensitivity, and not celiac disease, and presumably this has been identified by elimination provocation protocol, like we talked about. Before removing it from the diet, adding it back in, seeing what happens. For those patients, you recommend that they just use their symptoms as a guide to determining how strict they need to be on the diet.
Ramzi Asfour: Well, not exactly. And just to bring something up, there’s something called wheat allergy, which is different, right? So we want to, that’s an, you know people might have a peanut allergy, [and] you can have a wheat allergy. The reactions tend not to be as severe as peanut allergies. And we’re assuming these people do not have a wheat allergy. But I would say that they need to be strict. Because again, you don’t know if the fatigue that you get the next day is from maybe a little bit of stress or perhaps you didn’t sleep as well. What was it that gluten-free beer that you drank? Or was it that the gluten in the house affected you? I think that you should avoid anything that knowingly contains gluten, but you don’t need to be strict. You can have gluten in the house. If you have children, you can make them sandwiches with real bread. You can handle it. Things that I would never want a [patient with] celiac [disease] to do. And you can go out to eat. And they say if you want French fries, for example, my kids love French fries, even though not Paleo, but we have to let them have French fries once in a while. I have to make sure it’s a dedicated fryer that’s never seen gluten. Yeah, but if it’s non-celiac gluten sensitivity and they’re not pouring flour on the French fries, then even if there were onion rings in the same fryer, it’s probably okay for the [person with] non-celiac gluten sensitivity to have those French fries. But not for the [person with] celiac [disease].
Chris Kresser: Yeah, that’s really helpful. What are you looking forward to in terms of new testing, new treatments, and new ways of understanding celiac and non-celiac gluten sensitivity?
Developments That Dr. Asfour Is Looking Forward to
Ramzi Asfour: Yeah, I’m looking forward to somebody commercializing an easy-to-use test for celiac disease that doesn’t require a three-week or four-week gluten challenge. So, like the one I talked about, there probably are others. There was one study, a company that was doing a vaccine trial for celiac [disease] and it actually seemed to decrease inflammation when people were vaccinated by this. But it would not, it might be a good idea to have something like that for somebody who has celiac disease so that if they got gluten, they would have less of an immune response. But the idea behind it was, perhaps even to allow people to eat some gluten if they have celiac disease, and that did not pan out. So the trial was stopped, but to see something, perhaps, that you can use to either prevent genetically susceptible people from developing celiac disease, or just prevent the damage.
Because in modern life, it’s super hard to ask. Sometimes I like to travel, and when we travel, it’s a pain to go out and eat sometimes because you have to ask all the questions. And we go to France a lot, and I speak French, fortunately, so I can ask them all in France. But if we go to Spain, or Mexico, I’ve got to try to communicate. My Spanish isn’t as good. Or we haven’t gone as a family to China or Hong Kong or other places because I’m nervous about having to navigate that and I don’t want the health of my daughter to be affected. She’ll get ADD [attention deficit disorder] symptoms if she gets gluten and it would be a miserable trip for her and all of us. So we don’t want that. And so having some therapeutics to minimize that reaction would be really helpful.
Chris Kresser: Yeah, that would be a game changer for sure. Well, Dr. Asfour, thank you for joining us again. Let us know where people can find more information about your practice and the other projects that you’re working on.
Ramzi Asfour: Yeah, so CCFMed.com for Functional Medicine to become a patient, or the consulting for getting back to work is through my business called Capsid Consulting that’s www.capsidconsulting.com with a C. C-a-p-s-i-d Consulting.com. We’re updating the website to include a white paper and things about getting back to work for businesses and schools probably later today or by the end of the weekend, hopefully. So keep an eye out for that.
Chris Kresser: Great. Well, thank you again, Ramzi. It’s been a pleasure to have you back on the show. And maybe like I said, we could do another COVID[-19] update at some point in the near future.
Ramzi Asfour: I would love to. Thank you very much, Chris.
Chris Kresser: Okay, everybody. Thanks again for listening. Send in your questions to ChrisKresser.com/podcastquestion and we’ll talk to you next time.