Those with celiac disease know it’s a tough go on a lot of fronts. It’s a long-term problem that can ravage their small intestines, effectively blocking the body’s ability to take in nutrients. Making things worse is that the disease is somewhat controllable but not curable. Oh yeah, millions of Americans suffer from it, though many don’t even realize they are walking around with the disease. If all this isn’t bad enough, it is 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 experience any symptoms, which means they don’t even realize their intestines are on the fritz. 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. Megan Donnelly of the Celiac Disease Foundation recently spoke to WellWell on just how patients and others are learning to live with celiac disease.
What is celiac disease?
Celiac disease is a genetic autoimmune disorder where the ingestion of gluten, which is a protein that is found in wheat, barley and rye, leads to an immune response that attacks the small intestine and damages the villi of the small intestine. The villi are finger-like little projections that line the inner part of the small intestine that absorb the nutrients from the food you consume. So, the long-term effects of that are really damaging resulting in inflammation in the intestine, which can lead to a number of digestive issues, significant nutrient deficiencies and all the associated problems with that.
Do you think people are aware of exactly what it is?
I think people are familiar with the gluten-free diet. I think people recognize that celiac disease requires a gluten diet that a lot of people follow, but they don’t necessarily know why. There are people who follow the gluten-free diet for different reasons, many of which have nothing to do with celiac disease. Whether or not that’s appropriate is certainly debatable, but I think for celiac disease, people tend not to really understand that it’s an autoimmune disorder. 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, I would say probably awareness of the consequences of celiac disease is something that we need to improve.
What are the short and long-term impacts of celiac disease?
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 we’re not absorbing nutrition appropriately. Some people have 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 blood type issues like anemia. 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 GI cancers, osteoporosis and osteopenia. There are a number of people who experience neurological changes and things like neuropathy, which is basically just tingling in the extremities. Not every celiac patient presents with the same issues, but the prolonged effects of nutrient deficiencies are significant.
Do we see the number of people facing celiac disease increasing? Is it a matter of diagnosis?
Yes, I think it’s a combination of things. I think we’re getting better at diagnosing it. Awareness has certainly increased, but it’s possible that there is also an increasing number of people developing celiac disease. It is a genetic condition, so it tends to run in families. And I think as the population continues to grow, they are going to see more cases. I mean, it currently affects about one in 100 people worldwide. Prevalence has been pretty consistent for the last 20 years or so. But I think as we continue to start to recognize some of the non-traditional symptoms and possibly screening more people, it’s possible that we’re going to have more diagnoses.
Can you develop celiac disease outside of genetic factors?
You have to carry specific genes in order to be diagnosed with celiac disease, but there are a lot of people walking around with these genes that put them at risk and don’t 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 in your environment, there’s often a triggering event. We don’t really know why the gene gets turned on in some people at this point. Only 1 % of the total population is estimated to develop the disease. So, there are certainly a lot of people who don’t develop it for whatever reason.
What are some of the symptoms of celiac disease? Are there a lot of people running around with the disease who don’t know they have it?
Yes, we call this the celiac iceberg. There are a lot of people who are not diagnosed. And I think part of the reason for that is that there’s not one picture of what this disease looks like. There are over 200 signs and symptoms of celiac disease. Traditionally, we think of it as a digestive disease. People might present with symptoms like diarrhea or even constipation or possibly nausea and vomiting and difficulty tolerating food. But there are also a lot of people who present with very nondescript symptoms, like brain fog, headaches, anemia, fertility issues or difficulty growing. We see so many different symptoms 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 more common.
How would it be identified through your medical practitioner? Is it a matter of I’m eating gluten products and all of a sudden I feel worse or there’s something else that would trigger it?
Yeah, so I guess the first thing I would say is if there are other people in your family who have celiac disease or a gluten intolerance, that would be my first red flag. Otherwise, I think understanding what’s in your food can be a really helpful exercise here. I’m a dietician. I like to get into what food and how that food is affecting you. Gluten is found in wheat, barley, and rye and all the products that contain wheat, barley, and rye. So, if you’re feeling like something’s not right, I always tell people it’s good to keep a food journal and write it down. If you always feel terrible after your lunch meal and you have a sandwich for lunch every day, you 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. So even if you think maybe this is not related to what you’re eating, I do think it’s helpful to whatever data you can supply your physician to help accelerate a diagnosis. Studies show that people with celiac disease go four to seven years undiagnosed from the 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.
Is gluten intolerance the same as celiac disease or is it something else?
There are three groups of people who follow a gluten-free diet. The first is people with celiac disease where the gluten-free diet is the only treatment and it’s medically necessary to follow that diet. Then there’s a condition called non-celiac wheat sensitivity or non-celiac gluten sensitivity, where these people look a lot like a celiac patient, but they don’t test positive. The reason for that is unknown at this point. There is no biomarker for non-celiac gluten sensitivity. So, the way it’s diagnosed is just based on removing it from your diet and seeing how you feel. The third group might overlap with the non-celiac gluten-sensitive group, but this group of people has irritable bowel syndrome or IBS. Wheat, barley, and rye are gluten-containing grains, but they also have a type of carbohydrate called FODMAPs, which can trigger digestive symptoms in people with IBS. And we see that there’s a lot of overlap with the type 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. I always encourage people to get tested for celiac disease because 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 tolerate gluten well is to keep a food journal, keep track of it and follow up with that information that you gather with your doctor so that they can figure out the appropriate next steps.
People who don’t have celiac disease, they’re facing issues, but they’re not necessarily facing autoimmune issues. Correct?
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.
How do I test for celiac disease?
The first step 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.
Are there demographics or groups of people who are more likely to have celiac disease?
I think more research needs to be done in order to understand it fully. Autoimmune diseases tend to occur more frequently in females. The reasons for that are a little bit unknown, 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 percent. 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. The gene can be turned on, you can develop the disease at any age, which is interesting because, 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. Celiac disease is the only autoimmune disease where we know the trigger of the reaction, which is gluten. But why gluten triggers the reaction still is a little bit not well understood.
Is there enough research and insight put into this disease? How far have we advanced in the last five years? What’s needed in the next 10 or 15?
The gluten-free diet is currently the only treatment for celiac disease and it is not a good enough treatment. It is really hard to avoid gluten. It is easy to be accidentally exposed to gluten. And for a lot of people, this is a burdensome diet. I mean, it is one where it takes constant consideration of what you’re eating. 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 a gluten-free 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 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. 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 Disease Foundation website. And that is really our biggest push because it’s difficult to get more funding without people willing to participate in trials. And we cannot get a drug for celiac disease without participation.
Are there things that can be done to lessen the impact of the symptoms or is it just removing gluten?
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 and vomiting, sometimes there’s medication doctors can recommend to help reduce that. Unfortunately, until the gluten exposure is eliminated, you might continue to have symptoms, but we always recommend 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 reduce the impact of gluten itself. It’s really just treating symptoms.
I suspect it varies from person to person, but if I’m having an adverse reaction to gluten because of celiac, how long does it take for that to lessen if I eliminate gluten from my diet?
It varies from person to person. Some people really don’t get significant symptoms and others it can take weeks. It really depends.
What are some of the biggest myths or misconceptions people have when they’re dealing with celiac disease?
People are confused about to which degree they need to be worried about avoiding gluten in different settings. And I’ll expand upon that a little bit. 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 and it’s a problem because you contaminated it in a sense. We have a lot of research focused on this area, gluten cross-contact at this point because there are a lot of myths about cross-contact as a whole. Most of what I’m going to say is evidence-based, but a lot of what we tell people as dietitians, and as doctors, is not based on real evidence. It’s what we think is best practice based on what we know about contamination. Someone with celiac disease needs to 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. 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 are people who think they need to only purchase gluten-free cosmetics. We know that isn’t true unless you’re consuming it in your mouth. You don’t need to worry about gluten-containing cosmetics. So, there are 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 setting. Sometimes it takes a little bit of work if you are 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 repair gluten-free food and alleviate the burden for families who might have only one person in their family with celiac disease. The Celiac Disease Foundation has really great evidence-based information on its website. Try to avoid asking Google or social media groups because you might not be getting accurate information and we see misinformation about celiac disease all the time.
A lot of restaurants offer gluten-free dishes and pizzas. Do you think they do a good job of preventing that cross-contamination?
Many of them are. It requires a little bit of work. I always recommend that people call the restaurant ahead of time, let them know you’re coming, ask them the questions you need to ask them, and make that decision on a case-by-case basis. I live in New York City. I know there’s a lot of focus on allergens and gluten-free diets and just specialized diets in general. So oftentimes, they have a really well-thought-out answer and how they prevent gluten cross-contact. And I find that the best practice is to call ahead and figure out what your options are going to be. That’s not always appealing to people. Some people prefer to eat at home. They don’t want to worry about it, but eating is a social thing and we don’t want people to miss out just because they have celiac disease. I think it can be done. There are some great tools. There’s an app called Find Me Gluten Free that helps. It’s crowd-sourced data, but you really get a good idea of what restaurants do well, and I recommend that all the time.
Do you see a lot of herbal remedies or celiac-related products on the market that are good?
There are no medications or supplements that can reduce the impact of gluten and make something safe for someone with celiac disease. I’ve seen different products claiming to break down gluten so that it’s digestible and not inflammatory. There’s no evidence to suggest that those products are appropriate. 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.
Does it matter the amount of gluten that you consume?
Any amount can trigger a reaction, but the amount may determine the severity of your symptoms. So, I would say it doesn’t matter, but you might feel it more if you have more.
I’ve kept a food journal and something’s still off. Should I go see my doctor because maybe it’s something else?
The first step is to go see your doctor. A lot of people stop there though. Maybe they didn’t know what to ask for and they never got the follow-up appointment or maybe the doctor didn’t run the right blood test and they didn’t really get a clear answer but they’re still having symptoms. You should always continue to follow up and advocate for yourself. Then I think the next step is to work with a dietitian 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 good luck. They work with you on integrating these practices into your daily life. And there are a lot of people who maybe have celiac disease and they’ve been on a gluten-free diet, but they still have some other digestive issues. Maybe they have bloating or gas they can’t get rid of. A dietitian can work with you on combining the diets and making sure it’s nutritionally adequate. Because restrictive diets are limited in the nutrients they provide, regardless of what the restrictive diet is. A dietician will want to make sure you’re getting all the nutrients you need and find a diet plan that helps you meet those nutrition goals. A dietician should be part of your team if you have celiac disease or really any other digestive disease because it can be limiting.
About Meghan Donnelly, MS, RDN, CDN
Megan Donnelly, MS, RDN, CDN is the Director of Health Communications at the Celiac Disease Foundation. She is a specialist in nutrition for digestive diseases and has several years of experience in clinical dietetics, counseling, private practice and the gluten-free food industry. In her previous roles, she has had the opportunity to develop evidence-based training and education materials for healthcare providers, food industry professionals and individuals living with celiac disease.
Please visit the Celiac Disease Foundation to learn more.
