Two conditions that seem like celiac disease, but aren't

Our pediatric gastroenterology team has some the best celiac doctors in the world
From left to right: Pediatric gastroenterologists Timothy A. S. Sentongo, MD, Ritu Verma, MD, and Ranjana Gokhale, MD.

An estimated 1 in 100 people worldwide have celiac disease, a disorder where consuming any type of gluten can damage the small intestine. Gluten is a protein found in wheat, rye and barley, which are common ingredients in breads, pastas and cereals.

Despite awareness efforts, celiac disease is often confused with other gluten-related disorders — like non-celiac gluten sensitivity (NCGS) or a wheat allergy.

While the symptoms may be similar, these distinct medical conditions require different types of care. We asked pediatric gastroenterologist Ritu Verma, MD, medical director of the University of Chicago's Celiac Disease Center, to explain the differences.

“When people have symptoms, it’s important that they go to a doctor right away for the proper diagnosis, and not just diagnose it themselves and start a gluten-free diet,” Verma said.

Celiac disease

What it is: A genetic, autoimmune disease where ingested gluten damages the small intestine. Left untreated, it can lead to other health problems such as thyroid disorders, low bone density and intestinal cancers. Diagnosis requires a screening blood test and small intestine biopsy.

Symptoms: They’re extremely varied. They can be gastrointestinal (diarrhea, abdominal pain, etc.), non-gastrointestinal (chronic headaches, certain rashes, poor growth, etc.), or a person could be asymptomatic.

What sets it apart: It involves complete gluten restriction and careful avoidance of cross-contamination. It also can run in families, so it’s important that family members be screened. It can develop at any age, so both adult and pediatric doctors can treat it.

Treatment: Lifelong gluten restriction and follow-up care. A dietitian and medical providers need to assist with information about food choices, reading labels and lifestyle adjustments.

Non-celiac gluten sensitivity (NCGS)

What it is: Gastrointestinal (GI) and non-GI problems related to gluten consumption, but blood tests and biopsies test negative for celiac disease and wheat allergies.

Symptoms: Similar to celiac disease, with GI and non-GI symptoms like abdominal pain, bloating and fatigue.

What sets it apart: Blood tests are negative and biopsies are normal, despite eating gluten. Some gluten consumption is OK, up to the level that causes symptoms. People with NCGS don’t have to be as restrictive with gluten and cross contamination as people with celiac disease do.

Treatment: Identify the threshold amount of gluten causing the symptoms, and remove it from the diet. Symptoms will improve on a gluten-free diet, but it’s still important to meet with a dietitian to avoid vitamin and nutritional deficiencies.

Gluten (wheat, rye or barley) allergy

What it is: An immediate allergic reaction to foods containing wheat, rye or barley.

Symptoms: Itching, hives, trouble breathing or anaphylaxis (a life-threatening reaction), nausea, abdominal pain, itching and swelling lips or tongue.

What sets it apart: It’s the only gluten-related reaction helped by EpiPens (injectable epinephrine). Patients are treated by allergists rather than gastrointestinal doctors.

Treatment: Avoidance of allergy-causing food. An EpiPen could be used to stop the allergic reaction. Dietitians can help patients remove the problematic gluten from their diet.

Celiac disease is an autoimmune disease that means people who have it and eat gluten will damage their small intestine. And when people eat things like wheat, rye, or barley, their body reacts, and that reaction is harmful to their small intestine. Millions of people are impacted by celiac disease. Do you or a loved one have celiac, and how can you deal with it? It's coming up right now on At the Forefront Live.

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Today on At the Forefront Live, physician Ritu Verma and dietitian Macy Mears joins us to discuss celiac. And remember, you can ask questions of our experts, so make sure you start typing in the comments section at the bottom of the screen. And our final reminder is the program is not designed to take the place of a visit with your physician. So for serious things, go see your doctor, but ask lots of questions today because we've got some great experts on. Thank you for being on the program.

Thank you.

Appreciate you being here, and we'll just start off with kind of the basics and if you can describe to us what celiac disease.

So celiac disease is an autoimmune disease, contrary to what people think that it's an allergy, but it truly is an autoimmune disease, just like someone has multiple sclerosis or type one diabetes, and there's also a genetic component to that. So based on the genes, it's an autoimmune disease, and it occurs in people who then will eat gluten, which then causes damage to your small intestine.

And when you say damage to the small intestine, what does it do?

So the small intestine, even though it's called small intestine, is really a long organ, but it has these surfaces on the inside which have these things called villi. They're finger-like projections that help absorb nutrition. And what happens with celiac disease is the gluten then causes damage to the lining of these cells, to the villi, and the villi sort of shrivel up. Depending on how severe the disease is, this is mild shriveling to total flattening of the small intestine, and that hinders the absorption of nutrition.

And then the second part that happens with the disease is there is the intestinal part, and then the second is it can cause other autoimmune diseases. And that's why it's more a genetic autoimmune disease.

So it can be a pretty serious situation for people who suffer from it.

Absolutely. If it's not treated, not recognized in time, yes, it can cause a lot of complications.

Now it's interesting. When we talk about celiac disease, I think there's a lot of common misconceptions. And Macy, I'm glad you're here today because as a dietitian, you're a very important part of the team working with folks who have celiac. When do you come into the equation?

So it's usually when there's a known diagnosis. And at least for our clinic it works when the diagnosis is known. Then you make an appointment with the physician and automatically also see me because it is so food based, and our treatment right now is a gluten-free diet. So yes, I am very involved.

And it's really important for people to remember that part of the team here, a very important part of the team is the dietitian since it is a diet-related disease.

Well, and that's interesting, and I think it certainly bears repeating because one of the things we do here at UChicago Medicine, we believe in the team-based approach, and you two are a perfect example of that. And that's really critical to the correct care of our patients.

Absolutely. I think that one of the most important things that we can do is to have patients come in, see the physicians, see the dietitian. In some conditions we also need a psychologist. And the other beauty of being here at the University of Chicago is that as you get older, you have a transition that you can actually go and see an adult gastroenterologist as well and an adult dietitian. It goes across the continuum from pediatrics to adult being here at the University of Chicago.

So as we talk about pediatrics, when do we commonly see children first diagnosed with celiac? Is it something that starts right away, or is it something that happens a little later in life?

So usually a child has to start eating gluten, and so it usually occurs somewhere between 1 and 1/2, 2, depending on the eating habits in a particular family. You would say we probably see most of the children between two, three and older.

And then it really can be at any age. You can have a teenager be diagnosed with celiac disease for the first time. You can have an adult diagnosed with the disease for the first time as well.

And when you're dealing with these kids, Macy, I imagine it's probably challenging, particularly the younger children, to even have them understand that they have to change lifestyle. Of course mom and dad are a critical part of that, but how do you do that?

Yeah, that is a really good point just working with peds because each patient is different anyway. But also-- I know this is something we do-- you have to kind of channel yourselves to be like, OK, what will make this child change or realize that it's important to be the different kid at school or have to have a different snack? So I think just talking through it and really getting the whole family involved-- so patient centered but very family focused helps because then it does go along that continuum as they keep growing and understanding more.

It seems like we see a lot in the news and read a lot online about celiac disease, and we're hearing more and more about gluten-free diets. How common is this today?

So celiac disease, it's about 1% of the population. In some populations you see 1 in 80. In some areas, it's a prevalence of 1 to 100. However, I think there's a lot of people who don't have celiac disease but are on the gluten-free diet. And the other things to think about is if you have an allergy to gluten, any part of the gluten. And gluten, of course, is wheat, rye, and barley, so you could have an allergy to one of these products. And then there is, of course, nonceliac gluten sensitivity.

So it's very important for everyone to understand that each disease, each condition here needs to be diagnosed in a different way and dealt with in a different way. So for celiac disease, it's an autoimmune disease where you have a blood test that's abnormal. You have an endoscopy that's abnormal. You may or may not have all the symptoms, but it needs to be addressed in that way, and you have to be 120% gluten free, if I may say so.

And then in nonceliac gluten sensitivity, those blood tests are usually normal. If you have an endoscopy with a biopsy done, those are usually normal, but you have a lot of symptoms that improve on a gluten-free diet.

But it's really important for people to understand that is it really taking out the gluten that's helping or is it something else? So making that diagnosis, seeing someone who is a specialist in gluten-related disorders is extremely important before going off on a gluten-free diet.

I think that's a fantastic point because, again, I think a lot of people try to self-diagnose. They want to read something online, or you mentioned even before the show, they may have a relative that has celiac, so they think that some of the symptoms match. If you have any inkling that you might have a situation, you really need to see a doctor. And again, that has to be followed up, with depending on the diagnosis, a visit with the dietitian because there is a whole treatment that can be put around that child or that person. So very important.

We're getting some questions in online already. The first one is how are we going to get nationwide schools to take celiac more seriously? And even with the government's awareness, efforts, it still hasn't brought enough attention and awareness. And that's a difficult question for either one of you to answer, but I think it's a valid concern that parents might have if they have a child that has celiac.

So I totally agree. It would be nice if the whole country would follow one rule, and it would be very nice. But I think the way to get to it is to start small, and it really has started. So each community, each group, work with us. We work with our schools, and Macy will go through a little bit with that. So we work with each individual, if you want to call, county or state and then spread it to the other states.

There are groups that are in the process currently that are getting together and coming up with national guidelines for the 504 and for schools and so on. So that's something that you will hear this year, but there are groups that are working through together.

So don't lose hope. But for right now, we do have our own little thing that we do in each state itself. And Macy, of course, you know we do that, so if you want to talk a little bit.

So when a family does come in-- of course especially working with peds, the child spends most of their time at school. So what do we do? How do we trust others to keep them safe?

So a lot of the times it's setting up a 504 plan right away or getting documentation from your physician to make it very credible and something that the school has to take very seriously. So a lot of the times families choose to pack their children's lunch; and then also being aware of where the child sits; and, depending on the age, making sure that that child always washes their hands before and after; and just being very aware, don't ever share drinks with other kids or don't trade food or trade for different snacks; making sure that teachers and staff are aware of birthday parties and different events like that that go on. The child can't have that same food. But then also making sure that the parents send kind of like an emergency meal kit or an emergency kind of like a frozen TV dinner, I guess, to have in the nurse's office so that if something ever happens or a lunch is lost that that child always has something as well as different treats that then the child can have during those birthday parties or special events.

I am curious, Macy, how seriously are schools taking this? Are they reacting well, in your opinion?

I would yes when the parents bring it to them. So really focusing on having that meeting with the school staff, that 504 plan in place, doing everything they can to make sure that it's done. Generally speaking, I'm not sure. If it was never brought to their attention, I'm not sure how great it would be.

Sure. I mean, it's new.

And I think it's important for families to understand that the medical team, the clinical team is there to help you. So if you are facing some issues and concerns with school, get in touch with us. Let us help you as well so that we work together as a unit because what are the needs for one child may not be the same needs for another child.

So in the school's defense, I think that we can give them general guidelines of what needs to happen, but if there is a child who has a specific need, then reach out to us. Reach out to your clinical team-- not necessarily us, but your clinical team so that they can assist you in getting your child the best experience at school.

Another question from a viewer. How long after a diagnosis and the start of a gluten-free diet do you recommend retesting?

So retesting, there are a couple of things. So one retesting is the blood test. So you don't necessarily need to retest for at least about six months or so. However, being a parent, especially in a child who does not have the classic symptoms-- as a parent, you want to know how well are you doing with the diet? So often parents want to know. The children want to know in three months.

So is it OK to do a blood test, the serology, as it's called, the antibodies, in three months? It's fine, but six months is a good enough time to get those done. But sometimes all of us want report cards. Am I doing well or not? Am I sticking to the diet or not? So you could do anywhere from three to six months, and it's a blood test that's done to look at the antibodies.

And you compare those test results to the test result that was done before the endoscopy. And you may not have it normal in six months, so don't panic. What you want to do is you want to see the numbers going down. So talk with your clinicians. Talk with your team. Ask them to show you the numbers before the endoscopy and after, and the numbers should be going down.

Here's a question. How do I help my child feel better after she has been either cross contaminated or accidentally glutened? I think new use of the word, but if you've been glutened. So how do you deal with it?

So are no medicines per se that will block the gluten at this time. There are medicines in the pipeline. However, what can you do?

So it really depends on if a child is having abdominal pain, you can do some antacids. Lots of fluids is what you want to give. And whatever symptom they're having, you want to talk to your clinicians and see what medicines, if any. But usually once you've been glutened, if that's the word-- it depends on how big that gluten load is. Your symptoms may not be that bad. But then just based on whatever symptom you have, it just needs to be addressed, but fluids. Take a lot of fluids.

And I don't know if this was assumed in the question but also making sure you try to target what that was so it doesn't happen again.

Oh, absolutely. Absolutely, yes.

So before we started the show-- speaking of which, Macy. Before we started the show, you had, I thought, some really interesting comments as far as just kind of how do you set up for success with your child? You mentioned even maybe keeping snacks in different parts of the house or something like it. Can you share some of these tips with us?

Yeah. So that kind of goes on how the family is going to adjust to this. So we see it differently among all families and patients. Some choose to be totally gluten free in the home, which we don't necessarily advocate for if others don't have celiac disease, but sometimes it's easier to adjust. But if there are other kids in the family, sometimes it's a lot easier to have still those gluten-containing snacks or normal foods and have them packaged. Some families, like to leave them in the garage or in the entryway as the kids are leaving so that the other children that don't have celiac disease grab those on the way out.

A lot of families do also choose to set up dual kitchens, so gluten-containing and gluten-free foods. But we always would recommend condiments are never shared. They're labeled or some set up different shelves in the refrigerator that the gluten shelf and the gluten-free shelf and different specific area in the kitchen for those gluten-free foods or where you slice bread, et cetera, if that is a dual kitchen.

More questions from viewers. And these are great questions, so I want to get to as many as we possibly can. My son has just been diagnosed with celiac disease on Monday. We've decided to wait three weeks, which is the end of the school year, because we're terrified of cross contamination. In your opinion, should we slowly get rid of gluten or just stop eating gluten altogether cold turkey. And I think they're talking as a family.

So for the family, we don't recommend that they go on a gluten-free diet. The family should not go on a gluten-free diet unless there's someone who has some gluten-related disease.

The child, himself or herself, I don't think that one should be waiting if the diagnosis is there. It's a disease. If someone has diabetes, you're not going to wait for three weeks to start your insulin or anything like that. So it is a condition that one should not be waiting for the right moment because there will never be a right moment. I think it's important to meet with the team and let the team help you figure this out and work with you, hold your hand through this process.

And again, Macy, that's kind of where you play a large role in arming these parents with knowledge as they send the kids back to school, and that's really, really critical.

Yeah, and a lot of times when they do come and meet with us, they have taken the gluten out, but we're able to provide more tips and oh, I didn't realize this, or I could do this. This would make it much easier. So just like that viewer's question, cutting it out now, but it will be easier after meeting with the dietitian and your team.

Another interesting viewer question. If a parent has been diagnosed with celiac, how often should the child be tested, or should the child be tested even?

So as we said earlier, it's a genetic condition. So it's really important that the rest of the family be screened. So if a parent has the disease, then all the children-- and why not the spouse as well, for good measure. Maybe the spouse will end up with celiac disease too. But I think that all the children need to be tested, and there are blood tests that are done. There are different antibodies, and the information is available on our celiac center website as well. So the blood test needs to be done at the time of the diagnosis.

In terms of how often, there really are not any strict guidelines, but we do know that just one-time screening is not enough. So what I usually do-- and there is no science behind it, but it's easy to remember-- is that if your child is tested today and they are negative and they are going to be eating gluten, then they should be tested every year until they reach puberty. This is my bias because then I can remember and parents can remember, OK, it's once a year. It was this December. It's kind of hard to remember every two years or whatever. Until puberty I say because celiac disease does affect growth, so you'd want to be tested on a regular basis. Obviously you'll get tested sooner if you have any symptoms.

Another interesting question. My child is a freshman at college living and eating on campus, which I would imagine would be a challenge. Should we retest at the end of the semester?

It's like doing a drug test, right? So I think not just at the end of semester. Once you go on a gluten-free diet, you obviously get tested on a routine basis three to six months. And once your panel is negative, then you need to be tested once a year if you have the disease.

I think definitely test at the end of the semester, but more important is that the young person needs to be educated in terms of what does he or she need to do in college? And I think it's really important for that age group to come back and meet with the dietitians so that they are learning for themselves, not their parents telling them what needs to be done.

Yeah, and very college- or university-specific things-- who to talk to, who to get to know, what meetings to set up as well.

And I imagine there are probably even support groups on a lot of campuses.

For sure.

Yeah. It's funny. Once one of my patients was going off to college, and I said to her-- and she was feeling lonely. So I said to her, well, you know what? You send one of those e-blasts saying gluten-free pizza, my dorm and this time and see how many people show up. Your support group will be right there.

There you go. You've created one right there. That's great.

So Macy, this is a question for you from one of our viewers. How significant is the difference between a shared facility versus shared-equipment production process note on packaging, and how concerned should someone be with celiac disease about either of these flags?

Yeah, that's something we really haven't hit on yet, but obviously nutrition-label reading and ingredients-label reading is super important for celiac disease--

And a little tricky, I would imagine.

--and so much of a gray area, especially with this question. So you kind of have to go with what you know is the foundation of what has gluten in it. So always be looking for wheat, barley, rye, contaminated or not, labeled nongluten oats or malt.

So if it's something like broccoli, frozen broccoli, and it's manufactured in a facility that may contain wheat, we typically say that's OK because it's a voluntary label that they're putting on there, and broccoli naturally does not have gluten, and you know that from all of your great education. But if it specifically lists something that is manufactured on the same line as wheat or barley or rye-- they will typically only list wheat-- then we would say stay away from that or try to find a different substitute.

I think just the initial diagnosis when it's made, most of the people stay away from everything. But I think we all have to realize that we need our children to grow in this world. We all have to live here, and you cannot have so much anxiety put on them that is our anxiety. So I think there's a huge disease burden here, and so that's where it becomes important to have those questions and discuss with your team.

And you talk about the disease burden, and that's, to me, an interesting point because we spoke just a little bit before the program about the psychological and financial burden that a disease like this will place upon a family. You mentioned some families set up dual kitchens. Well, that's not inexpensive to do. The psychological burden-- obviously if you have a young child going to school and there's a party for another child, you don't want them to feel left out. So these are hard things. And again, that's the benefit of your team, I think. You really help parents and the children work through this and deal with this.

Absolutely, and I think that Macy does an excellent job with sitting down and talking to each family that is based on what they are going through.

And that might change from year to year.

Absolutely.

The next year we see you, it's totally different barriers to overcome.

I need to stop talking because we're getting so many questions. We're not going to keep up with them if I-- they don't want to hear me. So let me get to more of these questions. Would cross contamination make a child's TTG number be very high?

So TTG is Tissue Transglutaminase Antibody, which is one of the antibodies that is checked on the blood test before the diagnosis. So it depends on how much cross contamination and how often. So if you're sitting in a room and there's someone next to you has eaten a sandwich and a little crumb falls on yours and you don't realize it and then you get the blood test done, it's going to be normal. One time a little crumb, the blood test will be normal. So it all depends on how often, how much.

Interesting. My son was a 3-- is it a 3B on the Marsh chart? How long to heal?

There is no specific answer. All that I can tell you is it can take anywhere from six months to two, three years for it to heal totally. However, the good news is that if someone stays with a gluten-free diet, almost everyone-- in pediatrics. In adults, it doesn't heal as much, but in pediatrics, almost everyone heals if you are absolutely gluten free. Though again, there's a lot of research happening to look at healing process. But how long it takes, it's hard to determine.

Next question-- what is considered to be a low iron level in an endurance celiac athlete? How long after iron infusions do you get blood levels rechecked? Kind of a specific question.

So I think this is a question that's not just for celiac disease. Iron deficiency is seen in people with celiac disease, and that's because of the malabsorption. But again, it depends on if you're getting an iron infusion. So if you're getting an iron infusion, you wait for a few weeks to get your blood test done. So I think this you may want to address directly with your clinical provider.

And Macy, are there things that people can do from a diet standpoint if they do have iron deficiencies?

Yeah, well first of all, if it was celiac, we would definitely focus on a gluten-free diet first because then that helps with that healing. That then will help with your iron absorption. But yes, there are many different foods. We talk about our red meats, our also beans, our leafy greens, fortified cereals, which there are gluten-free options of that, fortified breads. So yes, there are options.

Here's another viewer question. Trying to get away from eating lots of rice or rice-based gluten-free foods because of the link to arsenic. Looking for alternatives.

Yeah, I just like this question because I think that a lot of the times we think that we can't eat grains altogether when we have to go gluten free. And then when we do, so many of the products are rice or corn based, which are fine but for multiple different reasons, like the viewer asked, I love talking about quinoa, chickpea-based items, different bean- or lentil-based things, sorghum, teff. There are many different naturally gluten-free grains and flowers that you can use, and a lot of products have really come a long way and taste really good and are easy to use, and there are tons of different recipes and resources that you can get different things besides rice or corn.

Here's one though that I do want to ask you. How do I get restaurants to understand about cross contamination? This person also asked-- and this is interesting-- what about kisses on the cheek? My granddaughters are little and kiss me on the mouth after they eat pizza or bread. Should I worry about that? Do I just need to wash my face? And I chuckle a little bit, but I think people are really concerned, and they want to be safe. So it's a legitimate question.

Definitely. I can take the restaurant one first. So that is something we really focus on, especially in our clinic, because it is such a part of our lives. So a lot of the times it's researching restaurants, especially if they're kind of chains or quicker lunch options, and seeing if they do have protocols in place for gluten free and avoiding cross contamination. But then if it's kind of your neighborhood restaurants that you see do accommodate, going in at a not very busy time and talking directly with the chef or the manager and seeing what protocols they can tell you about specifically how they make the dishes that you would possibly be eating or your child would be, to really kind of seek that out and then be making your own list. So it's really just knowing the questions to ask, which also you get more familiar with when we talk about kitchens at home. And then you can kind of.

[LAUGHTER]

We want to be able to give our grandchildren kisses, so you don't want to miss that, right?

Absolutely, kisses and hugs, absolutely, yes. So if grandma has celiac disease and the grandchild has eaten pizza and kisses on the cheek, it's fine. Just go wash your face, and it's OK, not freaking out about it. If the grandchild has a mouthful of goldfish and kisses you on the mouth, then that's a little bit of an issue. So that, you just rinse out your mouth quickly. But yes, hugs and kisses are allowed between grandparents.

That's fantastic. We are out of time. That was really, really interesting, and the questions were fantastic. We always have such good questions from our viewers. I love that.

That's all the time we have for our program today. If you need more information or want to make an appointment, please check out our website at UChicagoMedicine.org, you can call 888-824-0200. Also make sure to keep checking up on our Facebook page for updates on future At the Forefront Live programs. Thanks for watching. Hope you have a great week.

University of Chicago Medicine is advancing the forefront of health every day with innovations improving the lives of people with Crohn's disease, the most advanced care for complex pregnancies, and leading-edge cancer treatments that are shaping national standards. We're bringing research to reality and making the extraordinary possible so you can experience advanced care in everything we do. Welcome to the forefront.

Ritu Verma

Ritu Verma, MD

Dr. Verma is a highly respected pediatric gastroenterologist and a leading expert in celiac disease. She works closely with her patients and their families to manage this condition.

See Dr. Verma's profile

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