In this episode of What the Health, Meghan Donnelly from the Celiac Disease Foundation explores the challenges and realities of living with celiac disease. Celiac disease is a severe, long-term autoimmune disorder that primarily affects the small intestine's ability to absorb nutrients. While celiac disease is tied to gluten ingestion, it differs from gluten sensitivity. The difficulties in diagnosis, asymptomatic nature, and 200-plus potential symptoms of celiac disease are discussed. 

Meghan provides insights into the short- and long-term health impacts and the importance of genetic factors, lifestyle adjustments, and testing options. The necessity of a gluten-free diet is addressed alongside the efforts and obstacles in celiac research, future advancements and the role of the Celiac Disease Foundation. Awareness of potential links to other autoimmune diseases, the global prevalence and the importance of monitoring symptoms in one's diet are also highlighted. Finally, practical tips for managing celiac disease and reliable sources of information are shared, underscoring the importance of self-advocacy and seeking professional guidance.

00:00 Understanding Celiac Disease: An Overview

00:59 Challenges in Diagnosing Celiac Disease

01:35 Ways to Manage and Diagnose Celiac Disease

01:59 Expert Insights: Interview with Meghan Donnelly

02:46 What is Celiac Disease?

04:36 Symptoms and Long-term Impacts

06:06 Increasing Awareness and Diagnosis

07:08 Genetic Factors and Triggers

14:43 Testing and Diagnosis Procedures

23:20 Myths and Misconceptions

26:33 Navigating Gluten-Free Living

32:36 Future of Celiac Disease Research

34:49 Conclusion and Final Thoughts

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Ep41

Making things worse is that the disease is somewhat controllable, but not curable. Oh yeah, millions of Americans suffer from it, many of whom don't even realize they're walking around with celiac disease. If all this isn't bad enough, it's really hard to diagnose because the symptoms, weight loss, gas, diarrhea, cramps, joint pain, the list goes on, are similar to other digestive problems like Crohn's, IBS, intestinal infections, and more.

And here's another dollop of troubling news. Lots of people don't even experience any symptoms, which means they don't know that their intestines are on the fritz. Admittedly, this is a lot of bad news for those who suffer from celiac disease, worry they may have it, or are at high risk from the disease because of possible genetic links.

Thankfully, even though the disease can't be cured, there are ways to lessen its impact. There are also ways to help better diagnose those who may be struggling with the problem. Beyond this, additional advances may be coming soon too. So what are these tips, improvements, and promises? What the health has lined up is Celiac Authority to lay out what can be done and what the future may hold.

Listen up.

So now we're getting to the best part of every podcast is where we get to delve into these issues, in this case, celiac disease with an expert, and we certainly have an expert on hand to help us explore celiac disease, why it's happening, what it does to you, and maybe what people can do to deal with the risk. And we'd like to welcome, Megan Donnelly, Director of Health Communications from the Celiac Disease Foundation to our podcast. So, Megan, welcome.

[00:02:28] John Salak: Okay. We had touched base a little bit earlier before it started. We discussed not just celiac, but there's a lot of issues out there where people are familiar with the name but they're not really familiar with what the issue is.

And I think that happens more and more, probably because of information getting out there, but certainly with celiac disease. So Megan, the first thing I want you to do is tell us what celiac disease is.

[00:03:32] John Salak: Do you think people are aware of exactly what it is, not exactly, but largely what it is? Do people have a working definition for celiac or is it just sort of something we know is out there?

And this like feeds into how do people deal with it. But first, what about awareness? Is it the name or the issue?

I think people have heard of the term. They don't know how significant it is. They tend to think of it like an allergy, but it's really not. It's an autoimmune condition. So yeah, I would say probably awareness of what actually the consequences of celiac disease are is something that we need to improve.

[00:04:38] Meghan: So, I mean, see the when the villi are damaged, you're going to have nutrient deficiencies. The long term effects of those nutrient deficiencies can be significant. If you're not absorbing the nutrients that are important for bone health, you're going to have bone density issues. Sometimes, especially in children, we see poor growth because you're not absorbing nutrition appropriately.

Some people, have really bad symptoms that can lead to other issues. And symptoms can vary. They can range from things like neurological issues to digestive issues, to different, Like blood type issues like anemia, so there are a lot of different areas that celiac disease affects. And I think all of those issues over the long term can have increased risk for a number of other conditions that are difficult to treat people with celiac disease are at risk for death.

GI cancers, they are at increased risk for osteoporosis and osteopenia. There are a number of people who experience neurological changes and things like neuropathy, which is basically just People experience tingling in the extremities. People experience those things long term. And so I think the it kind of depends on the person.

Not every celiac patient presents with the same issues, but the prolonged effects of nutrient deficiencies are significant.

And if so, why?

I mean, it currently affects about one in a hundred people worldwide. And that prevalence has been pretty consistent for the last 20 years or so. But I think as we continue to recognize some of the non traditional symptoms and, possibly screening more people, possible that we're going to have more diagnosis.

[00:07:13] Meghan: So, you have to carry specific genes in order to be diagnosed with celiac, but there are a lot of people walking around with these genes that put them at risk that don't actually develop the disease. So, yes, we tend to see it run in families, but It's kind of a combination of factors that contribute to the disease.

So yes, you have to carry the genes, but your environment, there's often some sort of triggering event. We don't really know why the gene gets turned on in some people at this point.

[00:08:03] Meghan: Yeah, I've seen a number of different, well, a range, I guess you'll say. I've seen up to 30 percent of the global population carrying genes that would put them at risk for celiac disease. But yes, only 1 percent of the total population is estimated to develop the disease. So there's certainly a lot of people who don't develop it for whatever reason.

And two, then the follow up question, of course, is what would be some of the symptoms? I know there are multiple symptoms to it and then we can follow it up with how do you test for it. So are there a lot of people running around with celiacs who don't know?

Traditionally, we think of it as a digestive disease. People might present with symptoms like diarrhea or even constipation or possibly nausea and vomiting, difficulty tolerating food. That's common. But there's also a lot of people who present with very nondescript symptoms, things like brain fog, or headaches, or anemia, or, fertility issues, or difficulty growing.

We see so many different symptoms. things now. And I think at first, as celiac disease was becoming more well known, we really thought of the classic symptoms being the digestive symptoms. But more and more, we're realizing that a lot of people never get digestive issues and these non traditional symptoms are actually maybe more

Not that people shouldn't go for an exam, but just before an exam, how would I know that this is something I may need to look into?

So if you're feeling like something's not right, I always tell people, it's good to keep a food journal, write it down. If you always feel terrible after your lunch meal and you have a sandwich for lunch every day, like we should look at that sandwich and try to figure out if

that's causing issues.

Having that data can be really helpful when you go to your doctor or your dietician and they can help you work through what might be going on there. Even if you think maybe this is not related to what I'm eating, I do think it's helpful to whatever data you can supply your physician with that can help accelerate this diagnosis.

Studies show that people with celiac disease go like four to seven years undiagnosed from onset of symptoms. That's way too long and the effects of that can be significant. I mean, you're going to be much sicker than you would be if you were diagnosed early. So, yeah, that's where I would say to start.

So what's the relationship there? Or there may not be a relationship, but then to identify that, you may be gluten intolerant or not fond of gluten, but you may not have celiac.

And so the reason for that is kind of unknown at this point. There is no biomarker for non celiac gluten sensitivity. And so the way it's diagnosed is based on removing it from your diet and seeing how you feel. And then there's this third group, which might overlap with the non celiac gluten sensitive group, but this group of people that has irritable bowel syndrome or IBS .Wheat, barley, and rye are, they are the gluten containing grains, but they also have a type of carbohydrates called FODMAPs, which can trigger digestive symptoms in people with IBS, and we see that there's a lot of overlap with the types of foods that need to be reduced in the diet.

So, yes, a lot of people feel better when they go on a gluten free diet. The reason might vary. vary. I always encourage people to get tested for celiac disease because the the degree of which you need to be vigilant about avoiding gluten is really different. But I think the best way to know if you don't to just gluten well is to Keep a food journal, keep track of it, and follow up with information that you gather with your doctor so that they can figure out the appropriate next steps.

[00:14:22] Meghan: Yeah, exactly, which is why it's important that you know what's going on. People with celiac disease, because it's an autoimmune disease, are often at risk for other autoimmune diseases and it's important to get the right diagnosis so you can appropriately navigate

whatever else is going on in your health.

[00:14:54] Meghan: Exactly. So, the first step is a blood test. It is a simple blood test. Most doctors can order it with your annual blood work if you feel like there's a reason to be screened for it, but that blood test is only part of the story. You also need to go see a gastroenterologist who will do a biopsy of your small intestine and that's really important because you want to make sure that you actually have the damage to the villi.

That is the key factor for celiac disease diagnosis and so that is the identifying marker whether or not it's an autoimmune disease, like celiac disease or something else.

[00:15:43] Meghan: Yeah, this is a really good question because I think more research needs to really be done here in order to understand it fully. Autoimmune diseases tend to occur more frequently in females. Reasons for that are a little bit but that is what we see in the data. As far as ethnic groups, It's estimated that global prevalence is similar worldwide, regardless of where they live, so 1%.

We do see it in every ethnic group. Age is an interesting one. Historically, people thought celiac disease was only a childhood disease, but we're seeing more and more that Elderly people are getting diagnosed, and so it can be turned on, the gene can be turned on, or you can develop the disease at any age, which is kind of interesting because, you know, when did gluten start to affect you negatively?

What was that triggering event that started the autoimmune reaction? And I think that piece. is important for understanding why autoimmune diseases develop in general. I mean, Celiac disease is the only autoimmune disease where we know the trigger of the reaction, which is gluten. But why gluten triggers the reaction, it's still a little bit not well understood.

How much research is being put in? How far have we advanced in the last five years? What's needed in the next 10 whatever?

I mean, it is, It is one where it takes constant consideration for what your eating.

[00:17:58] Meghan: And because of that, there's a lot of focus right now in the celiac research world on finding other treatments or cures for celiac disease. The problem, though, is that there's not a lot of money being Funneled towards celiac disease research because you do have a treatment.

It's the gluten diet, but there are a lot of people who would love another option. And so I would say in the last five years, there have been significant efforts to get more funding for celiac disease and recruit more patients into clinical trials. It's kind of interesting because we have trouble getting people to enroll in clinical trials because You have to eat gluten in order to trigger a reaction, and a lot of patients don't want to do that.

Yeah, absolutely. So, it can be a challenge, but I would say the biggest barrier right now to getting a treatment or a cure for celiac disease is enrolling patients in clinical trials, and the Celiac Disease Foundation actually has a lot of options to help with that. We recruit a lot of people to clinical trials through our iRecruit platform on the Celiac Foundation website.

And that is really our biggest push because it's difficult to get more funding without willing to participate in trials. And we cannot get a drug for celiac disease without participation.

[00:19:50] Meghan: Exactly. Not everyone has the same symptoms. I think something that. might be motivating to people is that you're being closely monitored by medical professionals throughout these trials. And so, they're not trying to make people sick because they participated in a trial. So yes, dealing with symptoms is absolutely part of it, but the long term effects side, reducing risk for those you are being closely monitored by a medical team to make sure that you're going to be healthy throughout the process.

[00:20:36] Meghan: So avoidance of gluten is the only option, but we know exposures happen, and the treatment or way to reduce symptoms is really to treat the symptoms. So we tell people, if you get a lot of cramping, maybe use a heating pad. If you experience nausea, vomiting, sometimes there's things doctors can recommend medication wise to help reduce that.

Unfortunately, like until the gluten exposure is eliminated, you might continue to have symptoms, but we always recommend kind of palliative treatments to help people manage those symptoms. And ideally it doesn't happen often. But when it does, there are options, but there's nothing to kind of reduce the impact of gluten itself.

It's really just treating symptoms.

[00:21:41] Meghan: Yeah. It, it really does vary person to person. Some people really don't get significant symptoms and others that can take weeks. So it really depends.

I don't feel awful I don't have headaches and I know I read that you guys said there possibly 200 different symptoms You can have to this but if it's not an overt symptom i'm thinking okay I can go have some pizza after the game or i'm in paris And those baguettes look wonderful.

I'm just going to dive into the baguettes or the croissants or the brioche or whatever

one time.

But the problem is when you tend to cheat,

[00:23:01] Meghan: it tends to cycle into something where maybe you're doing it more often. And that is not, um, that is not healthy for someone with celiac disease to be regularly doing. So yes, I could see where that would lead to a temptation, but really that is something we want to avoid because the long term effects can be really damaging.

[00:23:37] Meghan: Yeah, there's actually so many here. I think people are really confused about two which degree they need to be worried about avoiding gluten in different settings. And I'll, I'll expand upon that a little bit. So there's something called gluten cross contact, and that is when a gluten containing item touches something that's gluten free, and then you consume it.

It's a problem because you contaminated it in a sense. We have a lot of research focus on this area, gluten cross contact at this point, because there's a lot of myths about cross contact as a whole. Most of what I'm gonna say is evidence based, but a lot of what we tell people as dietitians, as doctors, is not based on real evidence.

It's what we think we know. is best practice based on what we know about contamination as a whole and things like that. So, someone with celiac disease needs to basically think about using separate and clean items to prepare food. And I say that because, there are people who are really, really worried about this gluten cross contact thing and being exposed without their knowledge that they're so vigilant that it really affects quality of life.

You know, things like buying separate everything for their kitchen and only using that item for gluten free food preparation or never eating out at a restaurant because they're worried about cross contact. There's people who think they need to only purchase gluten free cosmetics. And we know that isn't true unless you're consuming it in your mouth.

You don't need to worry about a gluten, containing cosmetic. So there's a lot of things and I think my message would be

if you can clean it, you can use it to prepare gluten free food, and that applies to any kitchen settings. So, sometimes it takes a little bit of work. If you are at a restaurant, for example, you might need to ask a few more questions about how they separate and clean things in the back of the house.

But in a home setting, if you can wash it with soap and water, you can use it to prepare gluten free food. And that is really, it really alleviates the burden for families who might have only one person in their family with celiac disease. don't need to be worrying to the point of having a separate kitchen, essentially, for the person with celiac disease.

So, we see a lot, and I think finding reliable information is really important. I mean, your first go to should be your doctor or your dietician. The Celiac Disease Foundation has really great evidence based information on their website, and try to avoid asking Google or social media groups, because you might not be getting really accurate information, and we see misinformation in celiac disease all the time.

Do you think restaurants, are, cautious enough on that? Or do you think, yeah, they're trying to do a good job, but big kitchen, it's just really hard to prevent that cross contamination.

That's not always appealing to people. Some people prefer to just eat at home. They don't want to worry about it. But eating is a really social thing and we don't want people to miss out just because they have celiac disease. So I think it can be done. There are some really great tools. There's an app called Find Me Gluten Free that helps it,

you really get a good idea of what restaurants do it well, and I recommend that all the time.

[00:28:14] Meghan: Yeah, I've seen..

[00:28:42] Meghan: So that it's digestible and not inflammatory. There's no evidence to suggest that those products are appropriate. So, I would say, yeah, if you have a question about something and you're wondering if it's going to be helpful for you, bring it to your doctor. Let them tell you what the evidence is for it.

But at this point, we don't have anything.

Is that as bad as just a little bit or is it, the amount obviously has an impact?

[00:29:34] John Salak: So it's a matter of triggering the reaction. And then, Maybe how inflamed the reaction is in layman's terms or something like that. Okay, what are the two or three things they should do right off the bat?

I'm worried, I've kept a food journal and I just should see my doctor or I think something's off, I should just go see my doctor or what it, and maybe it's something else.

You should always continue to follow up and advocate for yourself. I think the next step, I mean, I'm a dietitian. I'm a little bit biased, but I think Everybody with celiac disease or any digestive disorder should be working with a dietitian to try to find ways to make sure the diet is adequate and appropriate for what you have going on.

Dietitians don't just, give you a prescription and say, here, good luck. They work with you on integrating these benefits into your daily life. And there are a lot of people who maybe they have celiac disease and they've been on a gluten free diet, but they still have some sort of other digestive issue.

Maybe they have bloating or, or gas they can't get rid of. A dietitian can work with you on. combining the diets, if you will, and making sure it's nutritionally adequate because restrictive diets are limited in the nutrients they provide, regardless of what the restrictive diet is. And so we want to make sure you're getting all the nutrients you need and finding a diet plan that helps you meet those nutrition goals.

So absolutely a dietician should be part celiac disease or. Really any other, digestive disease because it can be really limiting.

We're hitting the top points and they may not delve in, but in general, do you think there's a enough awareness or growing awareness among physicians to check into this? Okay. Or to see warning signs.

So think again, having the data to say like, this is how long the symptom has been going on. This is what it feels like. It might still take some time, but. You have to be an advocate your own health. And so, yeah, I think just keep pushing gastroenterologist is going to be the specialist for someone with celiac disease. but But usually you're not going to see a gastroenterologist unless you have something else going on that's related to the digestive system. So your primary care doctor or your pediatrician is often the first step.

[00:32:41] Meghan: Yeah, I feel like we have never been in a better place as far as research for treatments and cures. So I really, really hope so. We have a lot of exciting Celiac Disease Symposium, and we're hopefully going to have a lot more updates coming out of that. But I think you'll start to see some new research coming out for sure.

[00:33:19] Meghan: Yeah, so the Celiac Disease Foundation is a great source for information. Just so everyone knows, we have kind of an interdisciplinary team working on the information that's on our website. So we have a clinical trials focused group called our Scientific Affairs Team. They have me, I'm the dietician on staff.

We have a number of doctors advising us and we have people who have years of experience working in hospitals. And so we are really. Always networking to make sure the information on the site is up to date and interesting and relevant.

[00:33:55] Meghan: www. celiac. org.

Before we move on, we want to again encourage our listeners to take advantage of the hundreds of exclusive discounts WellWell offers on a range of health and wellness products and services. Now, these cover everything from fitness and athletic equipment to dietary supplements, personal care products, organic foods and beverages, and more.

Signing up is easy and free. Just visit us at WellWellUSA. com, go to Milton's Discounts in the top menu bar, and the sign up form will appear. Signing up will just take seconds, but the benefits can last for years. Okay, the bad news is that celiac disease can't be cured. The good news is that there is a growing body of knowledge that can help identify the disease and lessen its awful consequences.

And these are things you have to keep in mind. First off, gluten is out. No matter how hard this may be, there is no way around it. Thankfully, stores, restaurants, and virtually everyone else is becoming more accustomed to living in a gluten free environment. Secondly, learn your triggers. Beyond gluten, people experience individualized triggers that can ignite the disease and its symptoms.

These can include stress, pregnancy, childbirth, and viral infection, among others. Third, understand that if you're at high risk for the disease and you're experiencing potential symptoms, fatigue, weight loss, abdominal pain, nausea and constipation, visit your doctor. Get this checked out. Remember, celiac disease It can't be cured just yet, but it can be managed.

Well, that's a wrap for this episode of What the Health. We'd like to thank Megan Donnelly of the Celiac Disease Foundation for the great information and important insights she shared on how to deal with the disease. For those looking for more information, you should check out the foundation's website at celiac.

org. That's celiac. org. It's a great resource on all things celiac. Thanks again for listening, and we hope you'll join us again soon on What the Health.