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Dr Todd Williams teaches us about celiac disease; what it is and how this autoimmune disease affects individuals in a variety of ways. Celiac Disease Foundation Gluten Intolerance Group Beyond Celiac
The Riverbend Awareness Project brings you a new conversation each month about important causes and issues in our community. Every month of 2024 we will sit down and have a conversation with a professional from our community about significant issues like heart health, Alzheimer’s, literacy, and more. We’ll then share that conversation with you on the Riverbend Awareness Project Podcast, with the goal of sharing resources, and information that will help you have a better understanding of the particular problems, and solutions, associated with each topic.
Disclaimer: The views and opinions expressed in this podcast episode are solely those of the individuals participating and do not necessarily reflect the views or opinions of Riverbend Communications or the Riverbend Awareness Project, its affiliates, or its employees. It is important to note that the discussion presented is for informational purposes only and should not be construed as medical advice. Listeners are encouraged to consult with qualified health care professionals for any medical concerns or decisions. The Riverbend Awareness Project is a product of Riverbend Communications.
Russell: Hey, this is Russell.
Melissa: And this is Melissa.
Russell: Welcome to the Riverbend Awareness Project. Each month, we learn about important nationwide topics that also affect our community.
Melissa: This month, we're learning about celiac disease. And today, we have Dr. Todd Williams joining us.
Russell: Todd, could you tell us a little bit about your background and your experience with celiac disease?
Todd: You bet. My medical background: I went to the University of New Mexico School of Medicine and then did a lot of my training fellowship and residency at that same location. I ended up moving to Idaho Falls as my first real job as a gastroenterologist at Grand Teton Gastroenterology back in 2005 after a short stint in Iraq for the United States Armed Services.
We see celiac disease all the time. The prevalence of celiac disease is just going up continuously. We see it, you know, weekly, sometimes daily. So celiac disease is a very common disease that we treat in our practice.
Melissa: That's really interesting. Like, I didn't... I knew of, like, people with gluten issues, but I didn't think celiac was as prevalent as that. So, for people who don't know what celiac disease is, what is celiac disease?
Todd: Yeah. Celiac disease actually has been around since the 2nd century AD. We've kind of characterized as far as that, but it wasn't until a gentleman Samuel Gee back in 1887— interesting— journals go all the way back— actually characterized it and that's when we first started calling it celiac disease. What is it?
It's an autoimmune response to a protein in certain grains that causes the body to attack itself. Now these grains, there's wheat, there's barley, and there's rye, and there's a combination grain of wheat and rye that also causes this to happen. Not all grains have the gluten in it that causes the autoimmune process, and when this autoimmune process occurs, it causes the body to functionally attack itself. And what happens is the small intestine actually has a huge amount of surface area, and there's what we call villi which are like little fingers that increase the surface area and promote absorption. Well, as the autoimmune process takes place, you get infiltrative cells that go in there, and the body starts to react in such a way that these villi start to go away, and it reduces your surface area upwards of 90, 95%.
Well, this is huge as you can imagine, because now your body can't absorb— that tissue that's there doesn't absorb as well as it should, and there's about 90 to 95% less of it. And so you can imagine in situations like that, you're gonna get nutritional deficiencies and associated nutritional deficiencies. You're gonna have things like abdominal pain and changes in bowel pattern. You're gonna have fat in your stool and just ongoing like this.
Russell: That doesn't sound fun.
Melissa: Mm-mm.
Russell: What causes celiac disease?
Todd: You know, it's a genetic abnormality, but it's interesting because it's a variable transmission or variable presentation.
There's some what we call alleles on our genetic makeup, and they're called DQ2 DQ8. And about 40% of the population has those alleles in it, but not 40% of the population has celiac disease. It's interesting. So of those people that have DQ2 and DQ8 abnormalities, about 11 of the population will develop celiac disease. And so you ask yourself, well, what is the deal?
Why do some people develop celiac disease and some people don't? And so this is part of the ongoing questions that we have. So, what we do think is that with autoimmune diseases, and there's many, of which celiac disease is one of and is associated with these, is that we think sometimes a 2 hit hypothesis. Number 1, you have a genetic predisposition, but that in and of itself isn't going to trigger it.
And then there's something else that comes along. Whether it's an infection, whether it's an allergy, an exposure, could even be the common cold, we don't know, that turns that disease on. And next thing you know, your body starts to respond to the gluten in these sweet bars.
Russell: So can you develop celiac disease later in life?
Todd: You sure can, though it typically is a disease of childhood that then progresses through life. But interestingly enough, we're starting to see the biggest preponderance of diagnosis occurring in people between 10 and 40 years of age. Now, my oldest diagnosis occurred in a gentleman who is about 65 years old.
But in these people, if you look at it, if you start going back in their life, you start noticing that they've had GI problems for many, many years. It's either just not been characterized, or you get some of these old guys that are just tough as nails, and they're just not gonna come in and get anything done. And so we are seeing an increased prevalence. We are seeing that the age of diagnosis is kind of starting to trend up a little bit, simply because as access to healthcare continues to improve, people are getting the diagnosis.
Now, how many people in the world have celiac disease? About 1% of the population has celiac disease in the world. Well, how many how many is that? You figure there's 8... I don't know. I'm guessing 8,000,000,000 people.
1%'s a pretty large number. And any particular country is gonna have... It's gonna be anywhere from 1 to 70 to 1 in 300 people are going to have celiac disease. In the United States, it's about 1 in 250. Now once again, that's the diagnosis, people who actually have the diagnosis of celiac disease.
There's a study in Italy that was done just recently that showed of the people who have celiac disease that are symptomatic, there's about 7 people who have celiac disease that are asymptomatic. So it's it's a grossly under-diagnosed disease process.
Russell: What is asymptomatic celiac disease look like?
Todd: Well, just like we would think.
You know, it could be that people have not come in to be seen about their problems that they're having things, abdominal pain, diarrhea, failure to thrive, depression, anxiety, these sorts of things. Or it could be that people have a variable penetration. The idea that people who have celiac disease can't tolerate any gluten, that's kind of an extreme, and that happens with a lot of people, and those are the folks that are actually getting diagnosed.
But there are a lot of people who come in who just have, "I feel bad, but I don't feel horrible. Not enough to go to the doctor. Not enough to justify any type of intervention."
Russell: There's different levels that celiac disease can affect people. Right?
Todd: Yes.
Russell: So with that, can it get worse through age or are there things that can make it worse, or is it kinda like you you have your celiac disease and that's kinda what you're gonna be dealing with the rest of your life, or can it progress more, affect you more? What is... Can you tell me about that?
Todd: Absolutely. The answer to your question is, "yes." (Laughs).
And so what it comes down to is there's— there's about... When I talked about variable presentation, once again, 2 hit hypothesis. You have the genetic predisposition for it, and then something sets it off. So you might be 30 years old before you get the flu, or catch a cold, or covid, or whatever. And it sets it off. And then, for the next several years your symptoms get worse, and the reason they get worse is it's not something that your body responds to immediately.
It takes time for that inflammatory, the autoimmune response to come in and cause damage to the small intestine. And then it takes additional time to start developing the nutritional deficiencies that define the symptoms of celiac disease. And so you say to yourself, well, what would somebody look for? Well, there's over, you know, when it was characterized initially and as time has gone on, there's over 200 different presentations. There's 200 different symptoms with this.
And for fear of just rattling off, you know, things, it's kind of interesting to know. Because unless you're paying attention to these things, a lot of folks say, "oh I just have a, you know, a yucky gut." Or, "I just don't feel good." But then you start going, wait a minute. I have that.
I have that. And I have that. From a GI point of view, the typical things, diarrhea, foul smelling stools. You get that because you get malabsorption, and you get fat malabsorption. Esophageal reflux.
There's a swallowing condition that you can get that's an infiltrative process. You can get inflammatory bowel disease, and most everybody has heard of Crohn's disease and ulcerative colitis. The underlying etiology of that could be because of the mutational problems that are manifest in the DNA in the alleles, I'm sorry, in your DNA.
Your ulcerative colitis is more common than Crohn's disease. And then you can also have things like elevated liver function test. You can have autoimmune hepatitis, pancreatitis, which you don't wanna get. And so other things non GI related. There's a classic skin condition called dermatitis or pettiformis, where... and don't ask me how to diagnose it, I look at these things, these dermatologists, they're way smarter than I am as far as these things go. But that in combination of having elevated enzymes, specifically for celiac diseases, all you need to make the diagnosis. Things like headaches, peripheral neuropathy is where you have neurologic damage to things like in your fingertips, and in your feet that kind of progressively goes up. Epilepsy and seizures, depression and anxiety. You can have atypical presentations.
We've had... People used to think that you could not get celiac, or you could not have celiac disease, if you didn't have the classic malabsorptive stuff. Diarrhea, floating stools. One of the most profound cases of celiac disease I ever diagnosed was somebody who had seasonal affective disorder, which is a type of depression, and severe constipation. All of which got better once that person was treated for celiac disease.
Russell: I'm curious what demographics are more likely to have celiac disease?
Todd: So the demographics are important because not everybody has the predisposition, but I'll tell you as our world becomes more of a melting pot, you're gonna start seeing this affect nationalities and cultures that have not seen it before. We typically think of it as kind of a European disease, but we're seeing it in citizens from North Africa, the Middle East, India, North China are all big kind of areas where celiac disease presents itself.
Russell: Okay.
Melissa: While I was doing some research, I saw that there was kind of this discussion of there's gluten intolerance and there's wheat allergies and there's celiac disease.
So what are some of the differences between those different ailments?
Todd: So that's a great question because it plays a role. We... So, celiac disease is an autoimmune process. So for whatever reason, once again, the body is set off, it attacks itself in a very specific way. And if you take away that insult, in this case gluten, once again in wheat, barley, and rye, that autoimmune process will stop.
So that's celiac disease specifically. You have gluten intolerance, which arguably, I would say is probably more of a wheat intolerance than a gluten intolerance. And it really is, you just don't... you just don't tolerate it. You get abdominal pain, you get bloating. You can get diarrhea.
You can get all of these things. But what you don't do is you don't form an immune response. And you don't get the change of the absorptive surfaces. But once again, what's the treatment? Gluten avoidance.
Melissa: Mhmm.
Todd: And so a wheat allergy though, or wheat allergens, now that's a whole different story. And that affects less than probably about 1 to 0.1% of the population. That's a... That could be a very severe thing. That falls in the same category as you would see people who have bee sting allergies and also like peanut allergies.
It could be allergies to anything. These folks, when they get exposed to wheat, they develop the itching. They develop the dry mouth. They develop the stuffiness, the difficulty breathing. You can go from just having weird kind of immune mediated allergic reactions, all the way to what we call anaphylaxis, which becomes a life threatening... People are getting, you know, their shots and epinephrine, and that sort of thing to pull them out of it.
So that's really the difference. The wheat allergy is an immune mediated, but not autoimmune. Celiac disease is an autoimmune mediated that actually causes damage to the mucosal surface of the small intestine, preventing absorption. And glucose intolerance, non-celiac glucose sensitivity is just...You just don't tolerate it.
Russell: How do you diagnose celiac disease?
Todd: Okay. So typically, the way you diagnose is: first, you have a patient who comes in who has typical symptoms. And interestingly enough, if you have symptoms that nobody's trying to figure out, or nobody can figure out, you really need to go and see if you've got celiac disease, because it is the mimicker of almost every disease process out there without actually having the disease. Now, we're not talking cancers. We're just talking these disease processes.
Aches and pains and GI upset, peripheral neuropathies, and these sorts of things. But the way you diagnose it, there's a couple of ways. You can get antibodies, and this is a blood test which isn't perfect, but it's really close. And there's a specific one, it's called the tissue transglutaminase. And you could order that, and if that's elevated, then there's a pretty good chance that you have celiac disease.
But you have to be careful, because even if it's low, that doesn't mean you don't have celiac disease, because there's a large number of people out there that have a condition called IgA deficiency. And if you have IgA deficiency, you're still going to manifest the autoimmune processes of celiac disease, but you're not gonna manifest the antibodies. So you would be antibody negative celiac disease. So if you have a high probability, or you have a high feeling if you have a sense that these folks have celiac disease, and the antibodies come back negative, or even if they come back positive, but you wanna confirm the disease, or characterize how bad the disease is, you go towards endoscopy. And what that is, it's a procedure that we do a lot of.
We bring you in, we make you sleepy, we put a scope, it's about as big around as your pinky. It goes in your mouth, down into your stomach, into your small intestine, and then you take targeted biopsies. Now, there are some characteristic findings on endoscopy that suggest that you have celiac disease, but once again, it can't ever be that simple. Because you can have normal looking small bowel and have celiac disease, or you can have abnormal looking small bowel that you could swear celiac disease, and it turns out not to be. And it really requires a trained pathology, of which we have several in our community, to go down and look at that to make the final diagnosis.
So then you run into these problems where it's not quite so crystal clear. You have a little bit of elevation in your antibodies, and you have kind of a partial presentation on the biopsies. Well, then you get down to what are we actually dealing with here? Does that mean you don't have celiac disease? No.
That means you scratch your head a little bit and you have to think a little bit more because there's different types of celiac disease. There's classic celiac disease, which we kind of talked about. There's the atypical, which I kinda mentioned with the one person who had seasonal affective disorder, depression, and constipation. You can have subclinical, which is often not really... Which means asymptomatic, but it means it just hasn't been recognized yet.
You have what we call potential, which is probably what I just mentioned, where we think you might have it; we're not sure. What do you do? We have late, and then we have refractory. All of which play a role in the management, and the diagnosis, and the prognosis of celiac disease.
Russell: How does celiac affect other conditions that someone may have?
Todd: So celiac, what it does is it suppresses your immune system. And so it can cause you to have increased risk of having infections, kinda like pneumonia, pneumococcal infections. It can cause you to have severe nutritional deficiencies that can then predispose you to what we talked about before, peripheral neuropathies and that sort of thing. And all of these things, mind you, all that we're talking about is because of nutritional deficiencies. That, and also the fact that you have a chronic inflammatory response going on inside your body that it doesn't like.
So big things that we worry about are— and as far as nutritional deficiencies go— are the fat soluble vitamins: vitamins A, vitamins D, vitamins E, vitamin K. Everybody's heard of these things. The B vitamins, B1, B2, B12, B3. Interestingly enough copper, zinc, iron, carotene, folic acid. So all of the processes that go on inside of our body that require these things, they start breaking down.
And so you can get things that are somewhat atypical. Things like delayed menstruation for women, early menopause, low birth weight babies, early gestational or early delivery of children. With men, you can have reproductive infertility, defective sperm production. And interestingly enough, there's an increased risk of cancers associated with untreated celiac disease. The biggest one is lymphomas, small bowel lymphomas, it accounts for about 18%.
You can have esophageal cancers associated with the small intestinal cancers, specifically adenocarcinoma. The big one that we that we evaluate and treat a lot are colon cancers. And there's one that's just a devastating one, liver cancer. But there's always a silver lining. Right?
And in this case, there's a dramatic decrease in risk of breast cancer. I don't know how to explain that. It's just part of the epidemiology. So, but I wouldn't not control my celiac disease for that benefit.
Russell: What's the treatment for celiac disease?
Todd: So treatment for celiac disease, the short answer is it's gluten avoidance, which isn't... Which in theory or, you know, in talking about it seems like, well, that's— that's pretty easy. Just don't eat gluten. Well, then I challenge anybody to avoid wheat, barley, and rye. It's extremely hard. But there's kind of six key elements to the treatment of celiac disease, and that's number one, getting in touch with a skilled dietitian.
Because what you're talking about, if you think you're in that age range of 30-40 years of age, and you've just been diagnosed with celiac disease, then you've got some guy like me coming up and saying, you know, all of those things that we taught you, or that you learned how to do, how to eat, and how you derived all your food and everything else, you need to throw that completely away, and you've gotta do something completely different now. And so, just think about changing your entire dietary habits. So you need help. So dietitians are are huge.
Educating yourself. Education, education, education. You need to understand why you need to go on a gluten-free diet.
If you don't understand it, the odds that you're going to be successful drop off dramatically. Then it's about time that you get on a gluten-free diet. Once you've talked to the dietitian, and you kind of have a game plan that you're not floundering, you can go out and you can accomplish this. You educate yourself. You go on a gluten-free diet.
Then from a physician point of view, or practitioner point of view, you ID and treat nutritional deficiencies, which we talked about. Interestingly enough, a very big one, especially in women who are diagnosed with celiac disease, is osteoporosis and osteopenia. Secondary to vitamin D malabsorption. Most of the time, once you go on a gluten-free diet, you are going to replenish your bone stores. You're going to resolve that. But if you're in the sixties, or you're in seventies, you might need some additional help to do that.
And then participation in advocacy groups. It's huge. You need to have people that you can bounce things across. You need to have people that you can talk about, "hey, where can I go get a hamburger? Where can I go get a pizza? Where can I do these things?"
Because if you don't have that, you're not going to know, and it— the variable amount of gluten in a diet can affect people in different ways, but I'll talk about that here in just a second. And then, having follow-up with multidisciplinary team.
This includes dietitian, family practice, gastroenterology, and if you happen to be one of these folks who unfortunately has a clustering of autoimmune diseases like type 1 diabetes, endocrinology, and that sort of stuff. So one question that a lot of people will ask me is, "can I have any gluten in my diet at all?" And the answer is, well, it just depends. What happens is before people are diagnosed with celiac disease and before they get on a gluten-free diet, they think they're kind of at their baseline normal. They don't know what feeling good feels like, if you can imagine that.
And so, you know, if you look at a scale, and 0 on that scale is normal, what most people feel like, they're probably at a negative 10 or negative 11, while everybody else is at 0. They go on a gluten free diet. All of a sudden, boom. They get up to 0 like everybody else, and they feel fantastic.
Some folks, they get a little bit of gluten in their diet, and I'm talking about if you buttered a piece of bread with a knife, and then you got your gluten bread and you buttered it. Sometimes that's enough. They will drop down instead of negative 10, 11, they'll drop down to negative 30, negative 40. They will feel worse when they get that exposure than they did when they were at their baseline before diagnosis.
And so, there is a variable degree. Now, I have some patients who say, you know what? Gluten's delicious. I'm not gonna give up my gluten. I'm just gonna live like this.
Well, okay. And they do okay. But other folks, even if they get a whiff of it, even if they get just some wheat dust, even if they go out there where people are harvesting wheat, and they smell some of that, they get it in their saliva, and they take it down, will become affected by that. So it's a huge variation in how people are are affected by the amount of gluten they get.
Russell: So, I was thinking about this, and I'm curious. Is it more the amount of gluten or the ratio of gluten? Like, if you have just a little bit of gluten and you're eating a lot of other food, is that gonna affect you just as much as if you just had that amount of gluten alone? Does that play a role, the other food they're eating along with that?
Todd: Kind of like a dilutional thing.
Russell: Yeah.
Todd: If I eat a whole lot of this, I can have a little bit of that?
Russell: Uh-huh.
Todd: Not always. It just has to be there. Like I said, it could just be dusting.
So when I diagnose somebody with celiac disease, I always like to have their family, at least their significant other, their spouse come in with them, or their mother, or their father. And the first thing I tell them, well, one of the first things I tell them when we're in this meeting is I ask them, "is there anybody else in your household who has celiac disease?" And often it's no. And then the next thing I said, "as of today, your household is gluten-free." Now, you say, well, yeah.
No. But I mean, you go with a box and you take everything out of your household that has gluten in it, because that is the sanctuary of a patient who has celiac disease. They need to come home and know that whatever's in that house, they can have. Now, people that don't have celiac disease, and live in that household, they can gluten up wherever they want. They can go out to eat with their friends.
They can go out and do whatever they want, but when they step foot in that house, that is a gluten-free household. It has to happen. Because even just a small amount of cross contamination— you use the same toaster, you use the same blender— sometimes that's enough to keep the disease process going.
Melissa: I have a family member— he's hasn't been diagnosed with celiac, but he does have a negative reaction to gluten. And so we haven't been that good— we haven't completely taken everything or... I am not home anymore with that family member, but back home, we did have, like, "this is the gluten butter. This is the gluten-free butter."
We have a... You know, the toaster that has, like, the 4 like... "This is the gluten side. This is the gluten free side." So we— and then I think my mom would sometimes make bread. And so, there's a glass pan: "that's the gluten bread. That's the gluten free bread."
So, like, she thought about... I think she did some research too. She was like, this could be bad. Like, not even just if he consumes it, but if it contaminates it at all. So it's interesting to see that that's a thing.
Todd: No, it's a big deal. And there are many people that can make that happen. And I'm not saying that it's like, you know, a cardinal rule that you have to have have your household gluten-free. But what I am saying is that when you're in the initial stages of diagnosing and treating, you need to make sure that they have no exposure whatsoever.
Because then they can get better. And if they... Because if they are not getting better, is it because of cross contamination? Or is it because they've just got refractory sprue, and we've gotta look for something else? But there are many people— don't get me wrong— there are many people that make it work.
Melissa: So someone gets the diagnosis of celiac disease. What advice would you share with them on navigating social situations and dining out?
Todd: You know, it's one of those things that as a practitioner, I don't know at a granular level. I don't know. I don't live with celiac disease, so it's tough.
So I actually reached out to a friend of mine who has celiac disease. And what that person told me is that when when the diagnosis first came about, it was very, very disruptive. They didn't know what to do. It became... It dominated their life. Where do you go out?
Spontaneity of lifestyle completely went out the window because everything had to be planned. I mean, think about this. You go on vacation. How often do you think about where you're gonna eat while you're traveling? You think about, "hey. I'm gonna go to McDonald's," or "I'm gonna go to Burger King," or "I'm gonna go to In-N-Out," of which you can do because In-N-Out has a great celiac menu. Anyways, I just found that out yesterday.
One thing that is tough, because you start to realize how much of our society we socialize around food. And it's just almost everything we do. Even when you're working, you're eating. And so, what this person told me is, you know, it used to be that we'd go out and we'd go to dinner. We'd go to potlucks. We'd do this. And it got to the point where they couldn't even go. And so, eventually though, you migrate to the point where you are able to navigate these things.
So you go to Kneaders. People wanna go to Kneaders. I mean, talk about a gluten fest there. You go to Kneaders, you know, maybe you just drink a soda. You know, you still participate.
In many cases, if you go to social events where people are not used to having gluten-free diets, you bring your own. I have several friends that they pack their own meals when they go to these things, and everybody just knows. Hey, they've got celiac disease. It's not a big deal. They just make it happen.
Some folks have multiple family members who have celiac disease, and they navigate it by having one area that is regular food, and another area that's far apart that is gluten-free. And so these are some of the things. But it does put a big... It does hamper significantly social engagements and spontaneity.
Melissa: How can family and friends help support someone who's facing that with... like you said, because we have traditions around food and gathering. And so what can we do as family members and friends to support them?
Todd: So first of all is educate yourself on what celiac disease actually is because a lot of folks... I mean, it surprises me that there's people out there that don't think celiac disease is a big deal, even to this day. But if you educate yourself on celiac disease, then you're going to be better able to accommodate them. And people with celiac disease need to feel comfortable and feel empowered to say, "hey, I've got this condition. I would like to come. Are you able to accommodate me? If not, I still would like to come. I'll accommodate myself."
And so... And judgmental. That's kind of where the education comes in. There's a lot of judgment going on out there. Maybe not a lot, but there's a significant amount of judgment: "Ah, celiac disease isn't a big thing. These people are just, you know, maybe high maintenance and stuff." They are not. They have a bonafide disease process that which we talked about earlier can shorten their lives, make their quality of life horrible.
And sometimes, if they get exposed, and they're and they're not taking care of this, it can take days to weeks to recover from it. So taking it seriously.
Russell: What are some common misconceptions about celiac disease?
Todd: Well, the big one is that it doesn't exist. And so I can assure you that it does exist, beyond any stretch.
The other thing is the misconception that if you have wheat intolerance, that you actually have celiac disease. You don't, but you just need to avoid wheat.
Melissa: How has the knowledge of celiac disease evolved over time?
Todd: You know, when I just mentioned a minute ago how people need to take it seriously, up until probably about the last 10 or 15 years, I think as a society we didn't really take it seriously, and what do I mean by that? It's like simple things like: is something that says it's gluten-free really gluten-free? Now, that's a kicker, and let me tell you why.
Because we know that oats are safe for people who have celiac disease, but our oats that are processed in the same facility as wheat, barley, and rye, are they safe? So that's a big thing that's changed over time is oat processing has been separated from these sorts of things. Now, when I first got into medicine, you know, 20 plus years ago, it was hard to eat gluten-free. You had to really search, and I mean, your diets were very, very restricted. As time has gone on, as society has recognized that gluten is a big deal, that celiac disease is a big deal, you can find stuff.
You have entire sections in grocery stores that are gluten-free. Wealth of Health Nutrition, I hope I can shout them out, have a whole section on gluten-free. So as time has gone on, society itself, businesses, corporations have all recognized that this is a big deal, and they've adapted. Now, one thing that people bring up is, "well, eating gluten-free costs a little bit more money." Yeah.
I don't know what to say. But you know, I guess on the one hand, you're not going out and spontaneously eating at fast food restaurants and stuff, which we know is notoriously expensive. So maybe it's a trade-off. The food, the raw byproducts are a little bit more, but you're not eating out like you had in the past. As far as diet and nutrition goes, the person I spoke to last night told me, he says, "make sure you mention that just because you go on a gluten-free diet, and it becomes largely a healthier diet, doesn't mean you're going to lose weight."
And this is a big deal, and I tell this to all of my patients who come in. You are in a state of malabsorption, which means you may be only getting in 10% of the nutrition that you're consuming. All of a sudden—and so, and these folks consume a lot of food. They just eat— they have to, because they're just not absorbing it. When they go on a gluten-free diet, and the the the mucosal surfaces of the small intestines start to get better, guess what happens?
So does the absorption of nutrition. Well, their brain, their mind, their eyes think they should be eating this quantity of food. And next thing you know, weight gain ensues. And it's a big deal, and it's hard to back off on that because in your brain, you think you need to eat this quantity of food, and it makes you feel good. Especially now that you're actually absorbing stuff.
So weight gain is a big deal for people who have celiac disease and go on a gluten-free diet.
Russell: Yeah. That's something I would have never thought about, but...
Melissa: Not at all.
Russell: That's ineresting.
Melissa: Because you think, "oh, I'm cutting out carbs—" not carbs, but things that have carbs in them. You're like, "oh, I might lose some weight." No. You're actually absorbing more nutrients, so you might gain some weight.
Todd: Right. One other aspect of it is a... I kind of read this, the other day, and I thought, "that's kind of interesting," is that a gluten-free diet is low in fiber, low in roughage. And so one thing that will happen sometimes is we'll develop constipation where before they didn't have really any issues at all, or their issues were more diarrhea than anything else.
Melissa: They probably gotta find other sources to help...
Todd: Indeed.
Melissa: ...help that work better.
Todd: Indeed.
Melissa: Is there any ongoing research happening in the celiac disease?
Todd: Yeah, it's a huge area of research right now, and it's been going on for quite some time. I can tell you that, within our practice itself, we have a research group that we had some research on celiac.
The problem is it's very hard to recruit people for research for treatment of celiac disease. And the reason is most of the studies require you to be gluten-free and symptomatic. Now, let that sink in for just a second.
If— and for most people, if you're gluten-free, you're asymptomatic, and so it's hard to do that. And then on top of that, they require people with celiac disease that then start consuming huge amounts of gluten as part of the research protocol. But there are research arms out there. There are things where they have you take supplements that will break down the gluten and make it non immunogenic. So this and some of that.
They've got these research protocols that tightened the the junctions that hold cells together, so that you don't get infiltration of the gluten through the cell process and cause the autoimmune process. So there's a lot probably ongoing right now. There's probably 10 or 12. What's the success on them?
Not great. Not great at this point. But nonetheless, people need to understand that there is a lot of work going on because whoever can come up with something that would allow people who have celiac disease to eat gluten, it's gonna be huge.
Russell: Is there anything we haven't asked about that you want the audience to know?
Todd: No. I think just making people aware of celiac disease, you know, the fact that it is a real deal. The fact that it does affect people significantly. You know, try not to judge these folks, you know, if they happen to get a little bit of gluten. Gluten is tasty, and you take that out of your diet... I mean, people miss it.
Even people who have celiac disease. Being aware that, you know, special accommodations need to be made, but also being aware that most most places are working hard to accommodate people with celiac disease. I think it's a great place that, you know, a great position that we're in right now in society where, you know, people with this severe of a condition actually have a place that they can go. And that's where the advocacy groups come in. Because they're gonna tell you, "I get it that these folks claim to be gluten-free, but they're really not," or "these people, these are really good."
And, you know, nothing spreads better like social media and advocacy, and to help you go through these things. So there's a a couple of good websites out there. It's gluten.org and beyondgluten.org, which are good Internet sites to get education on. And so I would encourage people to look at those.
Melissa: Are there any other resources that you would suggest?
Todd: Talking to your report course, getting with a nutritionist, a dietitian. They're gonna be able to help you with that. And then, you know, most doctors offices are gonna have some type of guidance, printouts, handouts that you can use that isn't gonna be the be-all end-all. You know, people that have celiac disease, they're the experts at celiac disease.
They know everything about celiac disease. And so, you know, fellowshipping with people who have celiac disease and getting into those chat groups, that's where a lot of the information is gonna come from.
Russell: Okay, awesome.
Melissa: Thank you so much for coming in today.
Todd: Oh, you're welcome. Thanks for letting me participate.
Melissa: Yeah. If you enjoyed today's episode, please remember to share, subscribe, and rate the Riverbend Awareness Project.
Russell: If you'd like to let us know what you think, you can send us an email at podcast@eiradio.com. Thanks for listening and join us next time on the Riverbend Awareness Project.
Disclaimer: The views and opinions expressed in this podcast episode are solely those of the individuals participating and do not necessarily reflect the views or opinions of Riverbend Communications or the Riverbend Awareness Project, its affiliates, or its employees. It is important to note that the discussion presented is for informational purposes only and should not be construed as medical advice. Listeners are encouraged to consult with qualified healthcare professionals for any medical concerns or decisions. The Riverbend Awareness Project is a product of Riverbend Communications.