Episode 12: If You Can’t Afford Gluten-Free Food, You Can’t Treat Celiac Disease  

Vanessa Weisbrod:

Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the Celiac Program at Boston Children’s Hospital. At each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department. For 0.5 AMA PRA Category 1 Credits for physicians, 0.5 contact hours for nurses, 0.5, ACE CE, continuing education credits for social workers, and 0.5 CEUs for registered dieticians.

To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.

Janis:

Javier and his parents were sitting in their pediatrician’s office when they first heard the words celiac disease. The family’s first language was Spanish. Mom and dad only spoke Spanish to Javier at home, but his preschool teachers only spoke in English. So at a very young age, Javier was already bilingual. When the pediatrician said that four-year-old Javier had a positive blood test for celiac disease, his parents stared back at the doctor with blank faces. They had agreed to blood tests and stool tests because for the past four years, Javier always had diarrhea. They couldn’t remember a time when he had ever passed a normal looking stool. They were always runny and potty training had proved almost impossible. But when the doctor said celiac disease, they had no idea what she was talking about, but Javier did.

His friend at school, Ava, had celiac disease and she got to eat special gluten-free cookies during treat time, he was kind of excited. The pediatrician brought in a Spanish interpreter to make sure that mom and dad fully understood what needed to happen next. She explained that Javier would be referred to a pediatric gastroenterologist for an assessment and a small intestine biopsy, and that he might need to start on a gluten-free diet, but that he should keep eating normal food until after the endoscopy procedure. Javier’s parents left the pediatrician’s office feeling overwhelmed, but proceeded as instructed. Within three weeks, Javier had a biopsy that was positive, confirming celiac disease and instructions to start on a gluten-free diet.

Javier’s gastroenterologist office did a fantastic job providing education about how to manage a gluten-free diet and even offered resources in Spanish. Mom and dad felt empowered that they could do this well until they went grocery shopping for the first time and realized that a loaf of gluten-free white bread was $9.99 at their grocery store. A small box of gluten-free cereal was $6 and gluten-free mac and cheese was $5.99 compared to 87 cents for the normal box they were used to buying. Gluten-free pretzels were $7 for a bag that was smaller than the usual bag that cost a $1.79. The cookies Javier had seen at school were $9 for five small cookies. Mom spent 10 times more on that first grocery trip than any previous food shopping outing ever, and she had no idea how they would sustain these expenses long-term. She had no idea how she was going to feed Javier.

Vanessa Weisbrod:

The US Department of Agriculture defines food insecurity as a lack of consistent access to enough food for an active and healthy life. Feeding America projects that 42 million people, including 13 million children, experienced food insecurity in 2021. Black and Latinx households were disproportionately impacted by food insecurity with rates in 2021 triple and double the rate of white households respectively. It’s well established that processed gluten-free foods are consistently more expensive than their gluten containing counterparts, ranging from four to over 800% more expensive. In addition to costing more, the nutritional content of gluten-free food items is often poorer than conventional food items.

A recent study from Boston Children’s Hospital found that 24% of pediatric celiac patients experienced general food insecurity during the COVID-19 pandemic. And then when asked specifically about gluten-free food, 27% of the patients screened positive for food insecurity. Another study found that one in six patients with celiac disease are food insecure.

Janis:

The cost of gluten-free food became a major challenge from the first grocery trip after the diagnosis. Javier’s mom started cutting back on the quantities of food she would prepare for him, like using just one slice of bread to make a half sandwich instead of two, and only giving him six pretzels at a time instead of a whole handful. This seemed to work okay for a few months, but pretty quickly Javier started growing and in turn seemed to be hungry all the time. Mom had taken gluten-free snacks to Javier’s preschool, but he was eating them so quickly that they would run out after just a few days. Some days she wondered how bad it would be if he just ate the regular food that the preschool provided. Would it really hurt him to eat gluten just once a day? Cutting out providing snacks would save the family about $40 a week.

Vanessa Weisbrod:

The most staggering finding from the Boston Children’s Hospital study was that one in 10 households with a child on a gluten-free diet that was food insecure, reported eating gluten due to limitations on accessing gluten-free foods. Another study from the University of Calgary found that less than one quarter of food insecure celiac patients adhere to a gluten-free diet. This means that patients with celiac disease are not able to treat their disease because they can’t access gluten-free food.

Janis:

Javier’s mom felt like her world was sinking around her. She reached out to the dietician at the gastroenterologist office to ask for help finding cheaper gluten-free foods. The dietician talked to her about naturally gluten-free foods that were lower in cost like rice, potatoes, and corn. She also spoke to them about enrolling in programs like SNAP and WIC to help offset some of the food costs. Javier’s mom immediately looked into these programs and was able to start getting WIC benefits. She was overjoyed, but the joy quickly turned to frustration when she went to check her cart at the local grocery store and every single gluten-free item she selected was rejected from the WIC benefit. How could this be?

Vanessa Weisbrod:

State and federal aid programs are designed to help families facing food insecurity by providing a monthly stipend for purchasing foods. The special supplemental nutrition program for Women, Infants, and Children, or more commonly known as WIC, provides federal grants to states for supplemental foods, healthcare referrals and nutrition education for low income pregnant, breastfeeding and non breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk. A family with a young child with celiac would qualify for WIC if they met specific requirements. However, there are strict nutritional requirements and package size restrictions on the products that can be purchased through the program.

For example, some products must be 16 ounces in weight and other products must contain whole wheat or meet certain whole grain requirements. Today there is no gluten-free bread that qualifies under the WIC program.

Janis:

Javier’s mom returned home from the grocery store feeling defeated. Her first call was to the wonderful dietician they had met with who suggested the WIC program. She asked her lots of questions about why certain products were allowed and others weren’t. The dietician was shocked. How could a program designed to help families with a child with specific food issues not allow gluten-free food products? She vowed to help Javier’s family utilize their benefits. So she pulled up their state-specific guide to the WIC program and started highlighting all of the naturally gluten-free product options like fresh, frozen and canned fruits and vegetables, corn tortillas, rice, cheese, yogurt, eggs, peanut butter, beans, and a few choices of rice-based cereals.

Vanessa Weisbrod:

School-based food programs are another source of food for low-income families facing food insecurity. The National School Lunch Program provides qualified students with access to free meals at school. And today eight states offer universal school meals, so every child in the state eats free breakfast and lunch. A gluten-free meal option is required under all of these funding provisions. For families facing food insecurity, having two free meals a day for their children can be a huge financial relief.

Janis:

Unfortunately Javier’s Preschool did not participate in the National School Lunch program, so regular food support at school would have to wait until he started kindergarten. However, with the help of some advocacy from their dietician, they were able to convince the preschool to start offering naturally gluten-free snacks for all the children. So Javier and his celiac classmate could partake without their parents needing to send an additional food from home. They started serving cheese sticks, popcorn, vegetable sticks, and potato chips. This definitely helped a little.

Vanessa Weisbrod:

Food insecurity is a massive problem in the celiac disease community. Currently there is no treatment for celiac disease except for the gluten-free diet. Without access to gluten-free food, there is no treating this autoimmune disease. So how can medical providers support patients with celiac disease who can’t afford gluten-free food? What are the best practice for clinic-based screening? What resources are available to actually help patients if they screen positive for food insecurity? We’ll discuss this and more on today’s episode of Raising Celiac.

Today we talk about food insecurity in celiac disease with Dr. Nan Du from Boston Children’s Hospital. Dr. Du is an attending in Boston Children’s Hospital division of gastroenterology, hepatology and Nutrition, and an instructor at Harvard Medical School. Dr. Du received her medical degree from the Warren Alpert Medical School at Brown University, and completed her residency at Yale New Haven Hospital in Connecticut. She completed her fellowship in gastroenterology at Boston Children’s Hospital. Dr. Du’s research interests include the diagnosis and management of celiac disease, early infant nutrition and environmental exposures.

She’s particularly interested in the nutritional adequacy and safety of the gluten-free diet, as well as better understanding how to support families with celiac disease experiencing food insecurity. Welcome Dr. Du to Raising Celiac.

Dr. Nan Du:

Thank you for having me.

Vanessa Weisbrod:

So let’s start at the beginning. Can you tell our listeners what it means for someone to experience food insecurity?

Dr. Nan Du:

Sure. Yeah. So food insecurity as defined by the USDA is defined as the lack of consistent access to enough nutritionally adequate, safe, and acceptable food for an active and healthy lifestyle. In 2022, one in six children in the United States live in a food insecure household. And I always like to stress that food insecurity does not mean that you don’t have access due to financial issues, but it also can mean just lack of access to certain types of food, which I’m sure we’ll dive in a little bit more, but that’s especially important for our celiac patients.

Vanessa Weisbrod:

So while we’re here, can you talk about other social determinants of health and how these screenings have become important in healthcare?

Dr. Nan Du:

Yeah, this is a huge topic, so I don’t know if I can totally do its service in the brief amount of time that we have, but we know that childhood food insecurity has been associated with poor health outcomes, developmental risk, mental health problems, and poor educational outcomes. To broaden that, social determinants of health are non-biological factors that directly impact health and wellbeing. For children, this basically means factors such as the safety and stability of a child’s home and their neighborhood and their community, their access to healthy foods like we talk about with food insecurity, convenient transportation, health service access, like is there a hospital or clinic nearby? And also just good school systems. And basically the big question is what is available in community and what is the social context?

This also includes exposures to environmental toxins, violence and family stress that can be harmful to health. And this is an issue that’s being looked at worldwide and researchers from the WHO have actually demonstrated the importance of social determinants, noting that social position is very closely tied to health outcomes. And in the US this unequal access to resources really promotes health inequity. And a lot of these are based on socially constructed characteristics. And so what we’re finding is that some of these actually have a bigger influence than even genetic factors. And so by screening and at least trying to ask questions about this, we can at least attempt to try and address some of these inequities.

Vanessa Weisbrod:

That’s so wonderful. I’m so happy to hear that clinicians are getting involved in this. Let’s talk about why is it important for clinicians to be involved in discussing food insecurity specifically with celiac patients?

Dr. Nan Du:

I think this really simplifies down to one statement, food as medicine. Access to nutritious food is really critical to the health and the resilience of our families. And this is incredibly important for our celiac patients, and I feel like many of them will feel like I’m saying the same thing that they already know, but our only current treatment for celiac disease is a gluten-free diet. There’s many drugs coming down the pike, but right now that’s not currently available. And so in the situation is as, we wouldn’t want our families to miss doses of medication due to insurance or transport issues. It’s the same thing from a celiac perspective and for our patients, in that our role is advocating for access to safe and gluten-free food is just as important as when we try and advocate for families who need medications.

We also know that a gluten-free diet is substantially more expensive than gluten containing counterparts. So we know our patients are more at risk. So I think it’s important for clinicians to be involved to add that additional perspective and also so patients know that this is something we’re aware and we want to be involved to help them out with.

Vanessa Weisbrod:

Absolutely. Can you talk about what tools are available for clinicians to screen patients for food insecurity?

Dr. Nan Du:

There’s a few screeners available. Perhaps the most efficient and the one that’s been most supported thus far in literature, is this two questionnaire, Hunger Vital Sign is what it’s called. And I’m just going to give you the two questions that you can ask. It’s within the past 12 months we were worried our food would run out before we got money to buy more. That’s question one we would ask our families, either yes or no. And then the other one is within the past 12 months, the food we bought just didn’t last and we didn’t have money to get more. And again, we have them answer yes or no. And if families answer yes or no to either of these, what we’d usually recommend is considering a referral to social work or at least to ask some further questions unlike access to food and food insecurity.

There are other questionnaires that are used from a research standpoint such as the National Center for Health Statistics, US Household six item short form Food Insecurity survey. There’s also an 18 question one, but a lot of these are quite long and not I think the best thing to use in a busy practice. The other nice thing about the Hunger Vital Sign, it’s been validated in a busy pediatric practice before, so that’s why I usually try and advocate for that tool.

Vanessa Weisbrod:

From a practical standpoint, how did these screening tools get used in the clinical setting? Who asked the questions?

Dr. Nan Du:

This is such a good question, and I will be honest. I don’t think we have found the perfect solution yet, and I think this is an area where we need to do better, to be totally honest. And also I think it really depends on the clinic. Some clinics have families fill out a form that has these two questions when they check into the appointment, and so it’s completed by the time the clinician comes into the room. Some can have clinicians ask the questions directly during the appointment, maybe during when they’re asking about social history. Some may ask it during the time when the nurses are drawing their vitals and basically it serves as an actual vital sign. It’s a sign for you maybe that you need to dig deeper just on a social level.

I wish I had just a simple answer to be like it should be just done at this time. But I realized that all different clinics are designed in different ways. So I think this is where clinicians especially might have to think with their staff on where they think it works with the clinical flow.

Vanessa Weisbrod:

How challenging is it for you to ask your patients about food insecurity?

Dr. Nan Du:

I think it comes with a little bit of practice as you figure out personally what works with your clinic flow and your style and how you interact with your patients. From my perspective, I will usually throw it in with questions when I ask about how’s school? How’s the gluten-free diet going? What do you do when you go out with friends or do you have any issues getting gluten-free food? I really want families to feel comfortable talking about this with me, because it’s really just part of their medical visit. And I also really want to make sure they have all the resources that they need to succeed. And that’s kind of how I started off with. And the other thing is I usually don’t like to start off with this question, I usually like to kind of ease into it, but I still want to leave enough time in the visit for us to talk about food insecurity if it actually is an issue. So somewhere in the middle of the appointment.

Vanessa Weisbrod:

What do you advise for other clinicians to normalize asking these food insecurity screener questions? I know everyone isn’t quite as skilled or comfortable with it as you are.

Dr. Nan Du:

I think a lot of it is practice. Don’t get me wrong, it is challenging when you’re trying to remember all the things you need to ask and talk to your patients about. I think my best advice is start incorporating in whenever you do remember it, try it in different parts of your appointment as you figure out what works with your flow. Sometimes I actually will write it directly in my note, which I sometimes use as a template for what questions I want to ask. So when I get to it it’s almost like an additional reminder. Like I said before, I don’t usually have it as a first thing we talk about, but more after we’ve broken the ice, we’ve talked a little bit about how school is going.

And I will often start the discussion by saying, hey, the gluten-free diet’s pretty expensive, I just wanted to check in about access to gluten-free food. Some of my other patients have been having maybe some issues, let me know, I’m kind of curious. To really make sure that they’re comfortable knowing that they’re not alone.

Vanessa Weisbrod:

That’s a really good point. Knowing that they’re not alone can really help them feel more comfortable. Do you think that patients are ever afraid to disclose to their physician that they’re struggling to provide food to their child with celiac disease?

Dr. Nan Du:

Yeah, of course, I’m sure some patients are, and I can totally understand that. I think our job as physicians, we really don’t want to judge and we really want to just offer assistance in any way we can. I think we’re learning a lot how when you’re coming to see your doctor, we are not just talking about the medications, but also the whole system and what is around the patient, all of the social determinants. And so I also realized that sometimes individuals may not be comfortable on the first visit when they’re asked, but I will continue to ask it and make it a regular part of their routine visits so they know that it’s coming.

And we’ve actually also found that when we screen patients in their clinic visits, that it often doesn’t happen on their first visit or second visit, where food insecurity ends up being an issue. And so I just want them to know that if it’s not an issue now, that’s okay. If it is in the future, I’ll still continue to care and want to know about that. And so I think also being open about it and being consistent of when you ask the questions is also an important thing.

Vanessa Weisbrod:

Absolutely. Is there any risk to a parent disclosing that they’re struggling to provide food for their child? Could it lead to involvement of the Department of Children and Families looking into neglect?

Dr. Nan Du:

I really want to emphasize to families that are struggling to provide food for your child. This will not cause DCF to look into your family for neglect. This is really just us trying to get all the resources we have in our clinic available for you. Because if we don’t know, then we’re not able to help. And so I really want to stress that because I know that has been a fear and concern in the past that if they indicate that they’re not able to provide food to their child, they may be investigated. And that is not our goal in screening for food insecurity. Our goal is very much to contribute to the overall health of the family and not cause more stress.

Vanessa Weisbrod:

I think that’s the most important thing that you could have said today, in that we hear so often in our Celiac kids connection support group that families are so worried to bring up the idea of food insecurity to their doctor because they’re afraid they’re going to be reported for not being able to adequately care for your child. And so I hope that if there are families listening, they really take what you said to heart and can trust their doctor to help them in the process of getting food. So now that you have a patient that is screened positive for food insecurity, what happens next?

Dr. Nan Du:

That’s such a good question. And I think this really speaks to how when we are taking care of our patients, we’re not alone, it is not just doctors who are available to take care. We really have an amazing team that really supports us and supports the patients. And so I think when a family discloses that they have food insecurity or they do screen positive, I oftentimes will ask a few more clarifying questions in terms of just trying to get a gauge of the severity of it in terms of how often is this happening? Was there another change in the family’s life that maybe I missed when I asked prior questions on how things were going in their life? Was there a loss of job? Was there loss of housing? Because we know a lot of these things can be all interconnected. I think I always also like to mention how food insecurity can impact how you adhere to a gluten-free diet.

There’s been two studies that have come out that have actually shown that relationship. And I think also in the visit I’ll discuss how I really get to then draw on the amazing members of my team, such as our social workers and our dieticians, and how we’re going to set up some visits with them to help make sure that the resources that we have available through the hospital as well as through these two people can also get connected to the family. So usually in the visit that’s what I start with, and then I start making those connections and making sure I get approval from the family that these people can reach out.

Vanessa Weisbrod:

So talk to us about the role of the social worker and the dietician in supporting food insecure families with celiac disease.

Dr. Nan Du:

I wish I had more time to talk because I really want to rave about these two individuals in our team, because they really help support our families with these, with food insecurities. So our social workers usually we’ll kind of do even a more complete assessment in terms of what’s going on at home, in terms of, as we talked about, food insecurity is one of the social determinants of health, but there’s many things that are interconnected. So they might ask about in terms of electricity, is there housing stability? Is there transportation issues? Just trying to really gauge the multiple factors that can be involved when you have food insecurity. And they start connecting them to resources, because I think at least in Massachusetts, this is really state dependent. That’s one thing I do stress, but at least in Massachusetts, there’s many great supports that are available for individuals who need maybe some electricity support or relating to almost issues with housing landlords.

And oftentimes families are just not aware of those resources, are not able to connect to it. And so our social workers really help them with that. And then also just directly connecting them to food banks. And then if your hospital actually has a food pantry like ours do, they help connect them to that and make sure that they qualify for that. Our dieticians, man, our dieticians, really are the all stars of our celiac program, because I think the really important thing also to think about with the gluten-free diet, is that not all food has to have strictly the label of gluten-free on it. There’s a lot of also natural gluten-free foods, and our dieticians are absolute all stars on finding ways to make sure they can find more affordable, still safe options for our families on a gluten-free diet.

And we’ve started actually to do some classes related to that. I’m trying to find affordable meals for families to be able to fall back on if they need it.

Vanessa Weisbrod:

It’s really so challenging. I so sympathize with the mom in our patient story today, thinking about only being able to give her child six pretzels at a time so that she could stretch how far that bag of pretzels went. I can’t even imagine, I have two young boys at home and having to say, you’re only allowed to take six pretzels out of the bag at a time, it’s such a challenging thing. And so I agree the dieticians and social workers are just so key in helping these families get to a place where they can make things work. So thank you Dr. Du for all of this wonderful information.

We’re going to take a very quick break and when we come back we’re going to talk about your fascinating research on food insecure families with celiac disease, as well as how to connect patients to community-based resources. We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.

Speaker 4:

The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health, we are thrilled to support the production of this educational podcast.

Vanessa Weisbrod:

Welcome back everyone. So Dr. Du, let’s shift gears and talk about your research on food insecurity in the pediatric celiac community. Can you tell our listeners why you started doing this research and what you found?

Dr. Nan Du:

A lot of it as you can imagine is how research usually gets inspired is based on our patients. So as a fellow during COVID, I had a patient family who had celiac disease who were food insecure. They had incredibly limited supports from the government and then just also locally. And when I was diving through the literature, there was really limited amount on how one prevalent food insecurity was in the celiac populations, and really even less on how it impacts families. I’ll say there are two articles out that kind of came out in between or while I was doing the research. One was they were both kind of conducted in adults, which showed that dietary restrictions did make people more food insecure. And the second paper, which was modal, they used NHANES dataset, found that one in six celiac patients were less likely to adopt the gluten-free diet and had reduced daily nutritional intake.

But I think these were all in adults and these studies were actually being conducted around the same time I was starting to ask these questions. And I think the second reason why I got interested in this research, is in order to really get funding and support for the families and to really highlight this problem, you oftentimes have to first prove that there is a problem with data. So this is what really inspired the project as a hope that’s with some more concrete data we can really get people to help us start to generate solutions for the food insecurity that we know that our patients are having, but maybe we’re often not asking.

Vanessa Weisbrod:

So tell us what you found in this research. What were the interesting things?

Dr. Nan Du:

Sure. I realized I should actually give everyone just a really brief premise on what my research was on and what we did. Vanessa, as you explained beautifully, we did a study where we tried to determine the prevalence of food insecurity in families with children on a gluten-free diet. It was one of the first to determine the prevalence of food insecurity. And we also assessed how food insecurity affected the gluten-free diet specifically actually during the COVID pandemic. And we conducted an electrical survey via social media in 2021 where we asked individuals, the Hunger Vital Sign, the six item food security module, their gluten-free food accessibility, and then also a few other questions related to their social economic status.

And then going back to your question in terms of in the study what were the rates of food insecurity different in cities and rural areas? We found that rural communities had the highest rates of food insecurity and gluten-free food insecurity. And although food insecurity rates did not change significantly during the pandemic for the rural communities, small towns tended to be the most negatively affected by the pandemic with an increase in both rates of food insecurity and gluten-free food insecurity. I think it’s an interesting point, because I think when you think about it in terms of from a bigger picture of social determinants of health, you’re like, oh, maybe there’s a smaller, it might be small, but there’s more community supports.

But then at the same time, I think the pandemic very much highlighted the breakdown in the food production system where I think a lot of places in the US began to have lack of access to gluten-free foods because certain companies weren’t able to get their foods there just due to transportation issues. But yeah, I think it’s interesting because it also asks the question of how should we be distributing the resources to help food insecurity as well?

Vanessa Weisbrod:

Absolutely. So what was the prevalence of food insecurity in the pediatric celiac world?

Dr. Nan Du:

During the COVID pandemic, we estimated that it was about 24% for overall food insecurity and 27% for gluten-free food insecurity, and both increased during the pandemic. And what we also found that there was a population that were food secure but screened positive for gluten-free foods insecurity. So it was important to ask about both.

Vanessa Weisbrod:

That’s really interesting that a family could be overall food insecure, but then when asked specifically about the gluten-free diet, screened positive. And I think that really almost begs the question of why providers should be asking about food insecurity over time and not just at one point.

Dr. Nan Du:

I agree. I think our study really found that there’s, in terms of how you ask the question of food insecurity, it’s not a one and done question, it’s very much something that can change in between visits. And so I do think it’s important that you ask the question multiple times for sure. And also specifying about gluten-free food as well.

Vanessa Weisbrod:

Exactly. Because at their first visit with you after diagnosis, when they haven’t really switched to the gluten-free diet yet, they may not have gone grocery shopping and seen what those costs are. Much like our patient, Javier, that his parents felt very empowered and educated after that first education session with the dieticians, but it wasn’t really until they went shopping and saw what those bills were and how dramatically it was going to impact them, that they realized the food insecurity piece had come up. So definitely a plug for asking many times along the way.

Dr. Nan Du:

And I think the other thing I also want to stress is that I think it’s important also for physicians not to let their own biases also get in the way. Because I think the other thing, which was a little bit of a limitation of my study, is actually most people who answered for my survey were those who were in the privileged social economic status with income greater than 80,000. They were well-educated and from zip codes that were defined as comfortable and prosperous. It was actually a very well-educated, well-supported group of people. And yet we still found these levels of food insecurity.

And so I think it’s really important that people still ask the questions when maybe they might feel that the families are well-supported or maybe from a higher income level, because what our data shows is that people can still screen positive for food insecurity in our celiac patients at the higher income levels. And then I think that also gives the additional caveat that with our study, we found these levels in a population that’s relatively well-supported. What would we have found if we had asked in those of a lower social economic status?

Vanessa Weisbrod:

Absolutely, and this just brings up the point of income levels that are set for state and federal aid programs. They don’t take into account the cost associated with managing a special diet and what those additional hardships have. So we see families all the time that they’re trying to qualify their kids for free breakfast and lunch at school or qualifying for WIC or SNAP, and they make slightly too much money to qualify, but there’s no allowance in those calculations for what the cost is of the gluten-free diet.

Dr. Nan Du:

And I think this is a good time to at least mention that in terms of from a research standpoint, when they did market-based studies, that the gluten-free diet can be from two times to almost 10 times more the cost of a gluten containing diet. And so it can really make a huge difference the types of foods that you’re buying.

Vanessa Weisbrod:

For sure. So your data showed that 10% of families made the difficult choice to feed their child gluten because they couldn’t access gluten-free food. Can you talk more about this?

Dr. Nan Du:

I think this was actually one that we were actually a little bit surprised about from a finding standpoint. We found that there was a doubling basically of intentional gluten ingestion due to limited gluten-free food availability from prior to the COVID pandemic to during the COVID-19 pandemic, which we found was then the one in 10 households with a child on gluten-free diet, gluten was consumed intentionally because they had limited gluten-free foods. And what we also found was that in looking at our models, that your odds of having intentional gluten ingestion increased about five to seven times if you were either food insecure or gluten-free food insecure if you screened positive. And the other risk factor that put you at higher risk of this intentional gluten ingestion was if there was multiple household members who are following the gluten-free diet.

I always like to present this because I think it tells us, again, a few important things that we need to ask families when they come in for our follow-up appointments with celiac disease. One, it’s still important to ask about food insecurity. Two, it’s important to ask about gluten-free food insecurity because both of those increase the risk of intentional gluten ingestion. And three, it’s important to think about the general context is are there a lot of people in the household who need to follow a gluten-free diet? Because oftentimes you might think, oh, they might be better at following the gluten-free diet because more individuals are eating it, but there might be a component where that it’s actually then financially prohibitive and that they might actually then be intentionally ingesting gluten.

I do want to also stress as I know this isn’t totally relevant to the food insecurity perspective, but we totally acknowledge that there are moments in which individuals will have gluten ingestion. So this isn’t a comment on trying to do 100% on that, but I think what we’re trying to do is when families have a choice to not be forced to be deciding between do I get to eat or do I have to eat gluten?

Vanessa Weisbrod:

Absolutely. So as a physician, how do you counsel a family who comes to you saying that they are intentionally feeding their child gluten?

Dr. Nan Du:

I always first ask just, hey, just explain to me why. Because I think there can be a lot of things that are related to it. Some of it is their child’s not having symptoms when they eat gluten. So oftentimes that might just involve more education about the long-term effects of gluten ingestion on your intestine in terms of micronutrient issues, as well as issues with growth like osteoporosis and all of that. And then if it is financially motivated, I think it’s really important to meet the families where they are and to really ask, is it because things are expensive? Is it because they think it won’t do any harm? Is it because you don’t see any side effects?

I think it’s really important to figure out what’s the reasoning of it before then figuring out the best way to help these families. And then if it is related to financial reasons, I think it’s really important to again, offer the resources. I think some families may not want to take advantage of the resources, and that’s also okay, but I also want them to know that it is available for them, that it’s not a weakness or anything of sorts. In fact, this is part of the medical treatment for their child.

Vanessa Weisbrod:

So you’ve only touched on the tip of the iceberg with research in this area. What do you hope to learn next?

Dr. Nan Du:

Oh man, so many things. I think the first we talked about briefly already in the beginning of the podcast, which is screening. How can we best screen for food insecurity and gluten-free food insecurity? How can we do it in a manner that becomes well integrated in the clinic? And how can we get all providers involved in it? I think the second is something you also brought up briefly, and it was also in our patient’s case, is the role of school lunches. We are very lucky in Massachusetts as now they just passed that all school lunch and breakfast will be free for all students regardless of need. And we are actually starting to look into why some of our families don’t end up using that even when it is free. And so I think what the bigger question of that is, how do we utilize the resources that are available for our families in a more optimized way and to make sure that they are comfortable using it?

And if they’re not, how can we as medical providers get involved to make sure all parties are comfortable in providing safe gluten-free food to children with celiac disease? And then I think the third component also is emergency food services is another thing. And then the fourth is, what are other ways we can integrate food as medicine into our practice and have it be successful? And then the final thing is, I think that question about intentional gluten ingestion in the setting of food insecurity is one that I would love to see if we can prevent. We might be doing some research to see if there are certain things we intervene on, can we prevent that being something that families have to turn to?

Vanessa Weisbrod:

So let’s talk about resources. I think that oftentimes a lack of resources is a reason that physicians don’t like to screen food insecurity. So what can clinicians do to help a family that are struggling to provide gluten-free food to their child?

Dr. Nan Du:

And I totally acknowledge that with food insecurity is rising for all groups of people, it is not just those with celiac disease. And I think oftentimes when there’s a limited number of resources, that it can be at times hard for people to say, oh, save it just for this population. I think what I usually like to say is be creative, utilize all your community resources. Your patients have celiac Disease, but they’re also children and they’re also members of their community. And that there are ways to utilize the resources such as with our dietician, finding natural gluten-free products, whether it through the WIC program or whether through the food pantry. Those are ways to figure out how to use your community’s resources. And the problems you find in patients with celiac disease can also be found in those with food allergies. So ally yourself with other groups that might have similar needs to try and have a bigger voice at the table.

And I think the other thing related to that when we think about other resources, is that if you can’t find anything locally, think nationally as well. Because I think there’s many groups that are working on this, and you don’t have to reinvent the wheel every time. I think a lot of groups are more than willing to reach out and help. For instance, I know Vanessa, you and I actually helped out in a group in California where they’re talking about the food equity table, if I’m not mistaken, and hearing how they were brainstorming on how to get more resources specifically related to food insecurity in the community. And so I think sometimes signing up for those resources can be helpful as well.

Vanessa Weisbrod:

For sure. So food pantries in general do not have a great supply of gluten-free food. Why is this?

Dr. Nan Du:

It’s expensive, right? We talked about it before, and when they look at their bigger budget, they’re saying gluten-free food will technically only serve one to 3% maybe of their population. And the rising costs, oftentimes gluten-free products may not get the priority. And I think this is a really important point in that there are natural gluten-free products that in working with your dietician you can still access through the food pantry. And so it should not limit the food items that you have. I think in general we can advocate for food pantries to have gluten-free options, and I think that is super important in that even though it’s only one to 3%, there should still be options for our patients, but I also don’t want them to be limited by the availability and to know that there’s other options as well.

Vanessa Weisbrod:

Can you tell us about the food pantry at Boston Children’s Hospital and any other resources that you have available for patients?

Dr. Nan Du:

Yeah, so we’re really, really lucky at this hospital by some amazing work such as by Vanessa actually, and launching a new community program called, it’s Family Food Connections, is the title of our food pantry. It’s based in Jamaica Plain. It’s actually located in the Mildred Sea Haley Apartments, which is right next to one of our satellite sites at Martha Elliot. And it’s a Boston Housing Authority Development. And I think even when I say that title and all of the things there, I think what you’ll notice that’s amazing is that it’s near a satellite site. It’s in connection with another related to kind of housing, which is like we mentioned before, a social determinant. So it’s convenient for those in the community. And it also includes a lot of amazing resources such as free virtual cooking nutrition classes, and also there is a set aside gluten-free food. So families are able to go in and get bags of gluten-free products.

I think in order for them to qualify for that, they usually have to screen positive on a food insecurity screener. They’re assessed by one of the social workers and our GI department, and then are given that referral and then are able to go to this pantry directly. We also have some amazing options for individuals who are out of state or do not live nearby, and that through some generous donors we’ve been able to help support them with, they’re able to do mail order food packages. And then I think other resources in general is just that a lot of Massachusetts resources in terms of making sure they have supports on the other social determinants of health with housing, electricity bills and stuff like that.

Vanessa Weisbrod:

And Massachusetts has done such a good job with food at school. They are really are leaders across the state and food service programs that are making gluten-free options available for breakfast and lunch for kids with celiac. And so if families are listening that are in Massachusetts, either reach out to us for help or please talk to your food service providers, because gluten-free food is available in our schools here. So do you have any other suggestions for providers to help them with managing celiac families facing food insecurity?

Dr. Nan Du:

I think the big thing I want to stress is you do not need to reinvent the wheel. You do not need to feel that you have to set up an entirely separate food bank for gluten-free food. Start with local food banks, talk to them, explain what we’ve talked about in terms of the rising gluten-free food costs. It’s like we said, two to 10 times more, and work with local organizations and with local community members. Food insecurity I think has been rising in the last few years, but also there’s been an incredible recognition of how that impacts patient’s health. And so I think telling the stories of, for instance, our patient Javier and then also just other individuals might actually be able to at least get things moving already in existing resources instead of having to reinvent it or do more.

I think Vanessa, you probably can also list some actual groups that they could probably reach out to, so I’ll let you do that. But I really want to stress you don’t need to reinvent the wheel, there’s a lot of resources out there that you just need to connect to.

Vanessa Weisbrod:

Absolutely. And I think that for hospitals, partnering with a local food pantry is so important. One of the things we hear all the time from food pantries is that they don’t always have gluten-free food because they don’t know when they need it or who the families are that need it. And so if you have the ability as a hospital clinic to connect with the food pantry to let them know when you have patients that are screening positive so that they can be ready for them, I think that is something huge that you can do. It doesn’t cost you any money whatsoever, and it allows you to form a relationship and hopefully set up a pathway for your families being able to get food. One of the reasons that our food pantry at Boston Children’s works so well is that it is a direct referral from the provider to the food pantry.

And so we can track how many families are coming, how often they’re coming, where they’re coming from, and the types of food that they’re routinely asking for so that we know that it’s always available for them when they show up to get food. Forming those relationships with the pantries, having a system so that they know when families are coming and what they need, can just go so far in really making sure that they have consistent access to food. Thank you so much, Dr. Du for all of the wisdom that you have shared today. Now let’s find out where Javier is today.

Janis:

Javier is now in first grade at a local public school. He lives in a state that offers universal school meals and thanks to the help of his dietician has been able to get both gluten-free breakfast and lunch at school. During the school week. He gets gluten-free pancakes, muffins, bagels, and cereal for breakfast, and lunches that are nearly identical to those of his friends, like gluten-free pizza, sandwiches, hamburgers, and even macaroni and cheese. On Friday afternoon his cafeteria manager sends him home with a ziplock bag of gluten-free bagels and muffins to eat over the weekend, as well as vegetables harvested from the school garden.

Javier’s mom reached out to local food pantries for help, and now a local synagogue does a monthly collection of gluten-free food to help Javier and other families needing gluten-free foods for celiac disease. In her own words, Javier’s mom says, “This is so hard, I never thought we would need to rely on other people to feed our son. I’m grateful I didn’t have to feed him gluten and thankful that so many people have helped us. We will give back to all of them someday when we are able to.”

Vanessa Weisbrod:

Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists, to claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac, and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social @BostonChildrensCeliac on TikTok, @ChildrensCeliac on Twitter, or @CeliacKidsConnection on Instagram. Have a great month.