Podcast Transcript

Episode 59: A Balancing Act: Navigating Eating Disorders and Co-occurring Autoimmune issues, Celiac Disease, and Food Allergies

[Bouncy theme music plays.]

Sam: Hey, I’m Sam.

Ashley: Hi, I’m Ashley, and you’re listening to All Bodies. All Foods. presented by The Renfrew Center for Eating Disorders. We want to create a space for all bodies to come together authentically and purposefully to discuss various areas that impact us on a cultural and relational level.

Sam: We believe that all bodies and all foods are welcome. We would love for you to join us on this journey. Let’s learn together.

Ashley: Hi everyone, Ashley here. It’s so good to be back for season seven, and it is a little mind blowing that we are already here. I truly hope that you have found this space to be helpful and informative. And just a reminder that we love it when you all reach out to us, so feel free to connect with us and give us your questions, your thoughts, and any show suggestions that you might have.

Shifting directions here, I of course want to tell you a little bit about our episode today. So we have registered dietitian, Jamie Lee, joining us. She is a registered dietitian at Summa Nutrition, specializing in the treatment of eating disorders. She completed her bachelor’s in dietetics accreditation at McGill University, currently practices in Quebec, and also offers virtual sessions across the United States.

She employs a collaborative and trauma-informed approach in her nutrition work, providing compassionate care to individuals at all stages of recovery. Jamie has extensive experience supporting individuals with severe and enduring eating disorders, adults in later stages of recovery, and those navigating co-occurring health conditions. So Jamie and I’s path crossed earlier this year, and her work with co-occurring health conditions peaked my interest, really as I, myself, have recently been diagnosed with some food allergies, and navigating this has certainly had its challenges. So it got me thinking about the folks that we work with, including those with active eating disorders and those in eating disorder recovery. I was curious about how much more impacted are those folks when they have a co-occurring health condition, such as a food allergy, an autoimmune issue, or even celiac disease. Does this process of staying away from the food allergens drive the eating disorder voice and lead to unintentional restriction? Is there a new level of fear that emerges with these co-occurring health conditions? And really, how do they navigate it all?

So our hope with this episode today is that the conversation with Jamie can help you learn how to navigate these questions and maybe provide some support and tools if you yourself, a loved one, or a client has found themselves on this very path, so I’m excited for you to be here with us today. And just a reminder, as always, you are not alone. There are very many people out there, supporters and providers that want to be here for you. So just a reminder, you don’t have to do this journey alone. Thanks for being here today, you all.

Hi, everybody. Welcome back to another episode of All Bodies, All Foods. Today, we have Jamie Lee with us, and we are so excited for you to be here. Thank you so much for being willing to come on the show.

Jamie: Yeah, thank you. I am very honored to be here.

Ashley: So we’re eager to get this conversation started today. So obviously, we talk about eating disorders all the time. One thing that I want to address today specifically are complexities that come along with eating disorders. It feels like the more we learn about eating disorders, the more we recognize that we need to learn more. Right? And specifically when that comes to folks that are dealing with food allergies, diagnoses like celiac disease, autoimmune issues, things like that, we definitely see those come up when we’re working with our clients. And so I would love for us to just kind of talk about that today. What are the nuances that we see here? How can we best support those clients? What do we need to know as providers or even as clients? Jamie, I think you know this, we have a myriad of folks that listen to the show, and so whether they may have experienced an eating disorder themselves, whether they are a support person or whether they’re a provider. So I’d love for us to just kind of jump in and talk about these issues for all of our listeners. And so to get us started, would you be willing to just share a little bit of your background, Jamie? Maybe what led you into this field and specifically how you came to work both with eating disorders and with folks that experience these issues like autoimmune, celiac disease, and food allergies.

Jamie: Yes, absolutely. I’m so glad we’re diving into this topic today. I think it’s like very relevant for a lot of people. And how I got into this really, well, working with eating disorders specifically first, I think. I used to work at a medical clinic where I was provided a lot of referrals from doctors, a lot of like autoimmune diseases, food allergies, making meal structures and things like that. And I think in that I realized that a lot of people struggled with disordered eating because of the limitations in the medical food restrictions and what the recommendations were and maybe these folks didn’t have a lot of support. And so with the fear, I think they developed a lot of rigidity, which then instilled a lot of anxiety with like food decisions and things like that, that then led to disordered eating. So I think in seeing that, I was like, I’m actually fascinated. Like I want to learn more about like the disordered eating, the world of eating disorders and treatment and how that looks like. So, that’s kind of my career evolution and how I found eating disorder population very interesting to work with.

Ashley: Yeah, okay. And I’m curious, so finding the eating disorder population working with them, what then have you like, how did you, I guess, merge those together? So the autoimmune issues and the food allergies with the eating disorders and over the years, because you’ve been working with this population for years now. Like, what is maybe, I don’t know, like your biggest takeaway? What is like something very important that you have learned in working with folks that experience both of these issues?

Jamie: Yeah, the complexity really increases when we consider the eating disorder and the co-occurring conditions with the immune system, whether its autoimmune issues or an overactive immune system where it can lead to like food allergies and allergic reactions. And they can intersect in many ways and that can depend on whether it’s the eating disorder that came first or the immune condition. But I think like you mentioned through uncovering what makes up of an eating disorder when an immune condition is involved, we often see that in managing the autoimmune or allergy itself, sometimes it requires individuals to adopt a strict and pretty immediate dietary change. And that can be very destabilizing. Food can suddenly feel very unsafe. It can quickly become quite restrictive and unintentionally sometimes initiate disordered eating behaviors. And I think an aspect that’s not talked about a lot is when you do have an immune disease or medical food restriction is that, at home and especially if you live with other people, there’s this like constant underlying threat of like cross contamination. You’re always hypervigilant, hyper-aware, you have this real constant fear that impacts your nervous system, the gut brain connection. And when someone’s figuring this all out, there’s often very little or no pleasure with food. They don’t like dealing with food. They would rather not eat or it’s easier to just not eat. Very understandably so. And that’s where I think the behaviors can manifest or exacerbate in a range and a combination of eating disorders. Whether it’s ARFID, so that’s Avoidant Restrictive Food Intake Disorder and one of the types the aversive ARFID evokes this like fear based restriction where individuals who experience distress about like certain foods because of like, “oh, I’m going to get sick or what if this happens and I have this reaction.” And with food restrictions, there’s like this scarcity mindset. So when like the brain feels like resources are limited, that can also lead to a lot of nuance, a lot of layers and nuances in that, that require a very like individualized approach.

Sam: So complex and you bring up such a good point that these fears are real. And when we’re working with eating disorders, we’re often trying to combat these irrational fears, right? “Oh, this is the eating disorder voice tricking you. Let’s lean into your fear and do it anyway.” And then the complexity of, and there’s a real fear here that we do actually have to listen to. It’s like, “don’t listen to this fear, but listen to this fear.” And that’s really complicated. And that’s a lot to navigate. And I’m so glad that we’re doing this episode because there are so many different things that can trigger on an eating disorder. We talk a lot about how dieting can, but there are so many other things where when you start, you know, changing the way you eat, or if you even unwittingly put yourself in a negative energy state, like if you’re not eating enough, whether it’s because you have allergies or an autoimmune condition or celiac disease, it really doesn’t matter what’s causing that negative energy state, it still might trigger on an eating disorder. And that’s important for folks to know. I think some people are surprised. It’s like, I’ve had clients say, “you’ll never believe this, but I relapsed because I got the flu and I unintentionally lost weight and couldn’t eat and I relapsed.” And it’s, there are so many things that can trigger on whether it’s an eating disorder or a relapse.

Jamie: Yeah, that’s so true. And those, that’s, you know, all the nuances that we see when we’re working with these individuals who have these co-occurring conditions. And I think one of the nuances is like this emotional impact of having the food restriction that’s often perceived as like a rule or a non-negotiable or kind of something out of their control. And I think for someone struggling with an eating disorder, the idea of having to completely avoid certain foods can bring up a lot for them, whether it be fear or shame or anxiety or even relief because of the control. And so while avoiding certain foods for physical health, it can also easily become a point of obsession or rigidity for someone who’s struggling with the food part.

Sam: Absolutely. I came across some stats I wanted to read. The Celiac Disease Foundation reported that they have seen an average of 7.5% increase per year in folks diagnosed with celiac disease over the past several decades. And approximately 33 million folks in the US have food allergies, according to the US Food and Drug Administration. I’m curious, Jamie, what’s this increase about? Do you know?

Jamie: Yeah, thanks for highlighting those statistics. I think it really puts into perspective, like the growing prevalence of these immune conditions, like celiac disease and food allergies. As for what’s causing this increase, I think a part of it is also the awareness of people talking about it. I also think there are environmental factors that play a role as well, like people exposed to different triggers or different allergens, that might be increased due to, due to environmental changes. So I think there’s more and more people also seeking support through all of this, like “how do I even deal with it?” And because they’re getting more and more complex, it’s, it’s not only just, “oh, you know, I’ll just avoid that food and I’ll be fine. I’ll just live my life.” It’s like, well, it’s this food and that food and this condition and that condition and eating disorder. So I think it’s with all these complexities that people then seek for professional help to manage all these things happening at the same time.

Sam: That makes a lot of sense. And in a way, it’s a good thing that there’s increased awareness and people are getting diagnosed and getting a treatment plan that can actually help. What are some of the really unique challenges, you know, people might face if they’re recovering from an eating disorder. And let’s say they have let’s start with celiac disease. What do you see when you’re working with these clients?

Jamie: Yeah, I think it’s kind of re-navigating the values behind eating again, between physical health and mental health and their relationship with food through a gentle nutrition approach. Like how can we respect the dietary, the medical dietary restrictions and for celiac that would be gluten, while still staying flexible so we can foster like a healthy relationship with food, one that you feel safe in, you understand sort of your limitations and where to find your food. I think another one is the anxiety and the heightened fear around food that often accompanies both eating disorders and food allergies. And I think this gets tricky because symptoms of anxiety can often get mixed in with digestive symptoms caused by other conditions, and often clients talk about their symptoms like stomach aches and nausea and how unwell they feel. And they say it’s the food, it’s the food, because that’s the only thing that’s maybe changed. And, you know, that’s, it’s very validated. It’s in our sessions and conversation, we explore it, it could be the food. And what about the intersections? Like what are the symptoms that can also come up because of inadequate eating, the anxiety, the symptoms related to the condition? So it can get very confusing and nuanced, and I think something that gets underestimated sometimes is to what extent not eating enough can also cause these symptoms, can also contribute to the anxiety and cause digestive upset and what else can play into the cycle, right? So I think that’s often something we see is a lot of just anxiety and not eating enough and it’s all wrapped up into one messy bundle sometimes when they come to us and it’s, you know, through the sessions that we unravel all that.

Ashley: That has got to be so challenging. Trying to teach someone who may, who may have food allergies, who may have celiac, who may have some sort of autoimmune thing going on, that the stomach ache that they’re experiencing could be the food and it could be the anxiety, and it could be the lack of energy that the body needs, right? I’m thinking about intuitive eating, for example, that’s got to just like make that so confusing. Like, how do you know your intuition when all of that is kind of like going on for you?

Sam: That’s a really good question. How do you help a client like that, Jamie, where it’s like, you know, there’s these symptoms. How do we tease out where it’s coming from exactly?

Jamie: Yeah, that’s the challenge thing. There’s no way we can justify, you know, like, oh, 37% of your stomach ache is coming from that and 42… Like it’s just impossible. And I think that causes a lot of like mistrust from the body. And like you said, Ashley, it’s hard to be intuitive to your cues, your hunger cues, your fullness cues, all the cues that your body is trying to communicate. And so in trying to tease that out, I think it’s okay, like, let’s look at all the avenues, like what’s most tolerable here out of like, let’s say, eating a little bit more, maybe some working with the therapist if they have one for anxiety management, like what feels the most tolerable in this moment and will carve out our path with just that what’s the lowest hanging fruit and often with food people you know underestimate how much a nourished brain can actually help with anxiety, can help with the gut, and so often I advocate for that to be at least like a semi-first step in feeling better.

Sam: Mm-hmm. Well, and even to consider that that might be a possibility because I think instinctively people think, “well, I just need to cut more food out,” you know, or it doesn’t always occur to everyone that those symptoms are because they’re not eating enough. And it’s kind of shocking when they find out that that could be. That could be wrong.

Jamie: Yeah, that brings me to another point. I think these clients are so naturally just more vulnerable because of the rigidity and fear. They often feel trapped and stuck, so they seek information on the internet. And there’s tons of ways you can use food. I’m going to put this in air quotations, “like ways to use food to heal yourself” or anecdotes about a person trying this and their autoimmune disease went away, and another nuance, I guess, with that is with restriction, you’re also exposed to less triggers. And so sometimes people say, you know, I cut this out and I cut so many foods out and it worked. And unfortunately, there’s a lot of restrictive diets. An example is the AIP diet, the Autoimmune Protocol diet that suggests a lot of elimination. And these individuals are often in some sort of pollution mode, like I’ll do anything that that will help me. And there’s a perception too, that if nothing gets better, then you didn’t do this perfectly. Like you didn’t do this right. And it can lead to a lot of guilt and shame. So I think a lot of people can resonate with what you said, Sam about that.

Ashley: Well, even somebody with an eating disorder going through eating disorder recovery that messaging of I didn’t do this right. I mean, that’s something that they’ve experienced for so long, right? Like, and then that’s just another level of that. I mean, that’s sounds really challenging.

Sam: Of shame. Yeah, we have to remember. I mean, this is like, whether it’s the diet industry or the wellness industry, they make all their money off of making you think it’s because you didn’t do it right. And you just have to try the next thing. And I, you know, this conversation is reminding me of Christie Harrison’s wonderful book, The Wellness Trap, which is such an important book and reminds us how we can get caught in these traps, especially when we’re not getting the answers that we’re hoping for from the traditional medical system. And there’s this hope that, “oh, if I just find this, you know, magic elixir, I’ll be able to cure myself.” And it’s tempting. It’s tempting to try this, especially when you have people online saying how it worked for them.

Jamie: Absolutely. Yeah. It’s a very, very vulnerable space to be.

Ashley:  Which that brings me to a thought, Jamie, thinking about, you know, what you said, Sam, like, is there this magic elixir, right? Or thinking about folks that might be experiencing these issues, and have the eating disorder currently or as a past part of themselves, I’m imagining that if there is this idea of the special elixir or if there is this idea of just like one or a couple certain foods that fit with me that those are my quote-unquote safe foods. And so if in this process then I’m being asked to explore other things, explore other options, and obviously, if somebody has celiac or somebody has a food allergy, we’re not going to make them eat the thing that they’re allergic to, right. Like, obviously. But if they’re being asked to grow essentially this safe food list, but nothing else has kind of like, medically helped them yet, or they still haven’t had that relief in their gut yet. Nothing feels like it’s working. Do you see then a lot of rigidity and fear show up with that expansion of the safe foods list? And if that’s the case, like how do we navigate, approach or support that person when we’re trying our best to encourage them to do something, like let’s do something different, let’s add something different, let’s try a different route. However, it might feel up until this point, all routes have failed. Does that make sense?

Jamie: Yes, yeah, you’re so right. The rigidity and fear that can arise is a particularly difficult dynamic. I feel that sometimes it also comes with the perception of like a loss of control. And it’s amplified by both the fear of physical harm, like physically not feeling good and the psychological need for safety. And I’ll say to my clients, it’s just so normal for rigidity and fear to play a role, to come in as like a protective mechanism to make sure, and your brain’s trying to make sure, that a bad experience doesn’t happen again. Like your brain goes, what is the best way to prevent this from happening again? And I think that’s where the rigid parameters come in to play and often it’s very restrictive tendencies. And we were saying, when they do restrict, sometimes they find they do feel better, but it’s because they’re exposing themselves less to the triggering foods, so it kind of does work, but it’s not sustainable in the long term at all. I’d also say sometimes the rigidity and fear can come from the discovery of celiac and food allergies, like discovering that like actually living through the first time your body reacts can be quite intense, so it elicits a lot of fear and a trauma response, let’s say, and your nervous system is just constantly on high alert, scanning everywhere. And so, you know, with supporting them before even just tools, I think a lot of these clients come in in a fluster, like “I’ve tried this, I’ve tried that, like no one is listening to me.” I’m getting like opposing information and I find it’s really important to just listen to their lived experiences. And I think just that itself at first can be quite healing. Like truly they are the expert of their own body, their science and then there’s also what they’re going through, right? So listening and asking questions and approaching the session with more of a lens of curiosity I think can be really helpful in terms of supporting them, then with the actual tools, I think it’s to find what safety means first, which is redefining, I guess, their own definition of safe and normal eating. And I think that helps them regain some sense of control back after they’ve perceived a loss of control. So it’s trying to reintegrate the safe foods as much as possible, establish adequate eating with the safe foods. A lot of my clients also struggle with social eating, they get really anxious with social eating, you know, so if someone’s hosting, can you bring and offer food that you that you make and that you know is safe for you? There’s also family meal planning, and that can get complicated too, because just because you, let’s say, for example, have a food allergy or have celiac, it doesn’t necessarily mean that the whole family will now eat gluten free. And actually, it’s not suggested that, you know, someone without celiac is on a gluten free diet, we want to, or we want their digestive system to still digest all sorts of nutrients. So there’s family meal planning with exposures, it’s using the foods that they want to reintroduce back first, like what’s the priority in the list of exposures, and just working through those one by one.

I think self-compassion plays a very important role too. It’s a lot of the trauma informed work in naming and recognizing when and where that the nervous system is on high alert, parts of you that are, you know, constantly scanning, why are those parts there? So kind of exploration work in that. And the last thing I’d say is also building a support system is super important, just advocates who can like help you through social situations. They can be an ally with you at the table during Thanksgiving, or kind of know your little cues of when to step away, when to, you know, lean into something maybe a bit more challenging so I think all of those are tools and conversations that we would have.

Ashley: And I imagine those conversations take place over weeks and weeks and just kind of navigating that. I’m curious. Do you also ever see like grief show up for the clients, especially if like a new allergy or a new diagnosis has come up and now they have to kind of not engage with something that they previously had and what, sow do you navigate that?

Jamie: Yeah, I often think that’s like the first thing that people bring up is losing the access to these foods. And sometimes these foods are foods that they really enjoy. So it’s also losing like a bit of pleasure associated with the food that they now have to be very aware of, kind of walk on eggshells around, or just completely not have and completely eliminate altogether. So I think grief and even in the early stages, a bit of denial comes into play too. And that’s it’s very, very, very challenging. And I think it’s hard to move from there to immediately like, “what am I going to do about it? How can I live this new life? Like how can food fit into my life again?” And I think just taking it day by day, event by event, like a lot of people would bring in, you know, “I have a potluck with friends on Friday night. Like, what am I going to do now?” Like a lot of maybe hopelessness at the beginning too. And so it’s, I think with those, it’s really getting to the practical like tips. Like, what can we do to prepare for it? What can we do during the event? What can we do after the event? And I think just going day by day and week by week with some of these things, they gain experience now of how to manage and how to still live a fulfilling life with these conditions and with these things that they now have to keep in mind.

Sam: Well, I mean, just like an eating disorder impacts relationships, so do these other issues. And it reminds me of a bit of research I came across. The Food Allergy Research and Education Association reports that food allergies can greatly affect someone’s quality of life. For example, higher levels of bullying among children with food allergies. I was wondering if you had experience working with clients who have to deal with that as well, a whole other layer.

Jamie: Yeah, I think the social aspect is extremely relevant in this work, just and especially children, right? Because I think a big part in having allergies or food intolerances is the advocacy, like you have to you have to tell someone what your food restrictions are, you have to tell someone who’s preparing food, what you can and cannot have. And so I think children particularly struggle with that because of the advocacy piece and they rely a lot on their support network with like parents and family members that can help with that. And do it in a way where it’s neutral. And I think that’s maybe where some of the bullying can come in is when there’s judgment or there’s, it’s maybe expressed in a condescending way of like, “oh, like you can’t eat this now, like that’s so sad”. So it’s really just sort of like a neutral observational noticing kind of lens where it’s like, “hey, like this is, like let’s set clear boundaries, like this is what’s happening and this is what you can have and what you cannot have. And look, there’s like, there’s alternatives as well to this.”  I think just kind of neutralizing the environment as much as possible is helpful, especially when it comes to children with food allergies.

Sam: And you know, also, I was also reading how their, you know, parents who have children with allergies, they’re living with an elevated level of stress. And I think to myself, you know, I think through the lens of family therapy and how living in a house where your parents are stressed out about your allergy all the time, and that can impact the relational dynamics. And I was wondering, you know, how do you support parents who are trying to navigate this?

Jamie: That’s such a good question. I’m working with a client now who’s exactly in that same scenario where because of her son’s allergies, she’s now kind of cut out foods and become very anxious around foods. And it’s almost become an issue and feel feels problematic for herself. And I think it’s all about building confidence in their allergy management, and allergist will also help a lot with that. But it’s, it’s finding their safe spaces. What are the safe restaurants? What are the safe menus? Who are the safe people they can eat with who are aware of these allergies, making the environment less dangerous. So for example, I worked with a client where she got a second toaster, which you know, I think we don’t often think about like getting, and she was fortunate enough to be able to have space for a second appliance and financially too. But that was a huge game changer for her. So it’s finding ways, I think, in setting clear limitations, boundaries, the allergy management part, finding the safety and like, you know, I have these lists of 10 restaurants that I feel completely safe in or the section of the menu that I feel completely safe with, so that you still have the flexibility and choice, it’s just knowing, I guess, where your safety lies in the environment.

Ashley: So doing some research and education for yourself, doing that advocacy, it reminds me just, I have a friend who has a son who is in Scouts, and she is the, my friend is the scout leader, and they have a student, you know, a young person who is in scouts, who does have celiac. And so whenever they go camping, she also gets the gluten free pasta and the gluten free Oreos. So that’s kind of their standard. The whole scout group eats or eats pasta. He just gets his gluten free. And then for dessert, they have Oreos and he gets the gluten-free Oreos. So advocating so that even for the child, like creating that safe space is important for them, too.

Jamie: Exactly, exactly. And maybe just doing very minor changes to the way you prepare things. So another example could be, let’s say, we will cook the gluten-free options first, then we can use the same pan for the gluten pasta, right? Because, you know, a person who can eat gluten will not mind those things mixing in together, but the gluten free person will need theirs completely, you know, no cross contamination. So it might take a little bit more time, it might take a little bit more energy and some organization, but there are very practical ways that we can ensure that their safety is prioritized in the preparation of foods, in what’s accessible. And often that requires a bit of planning in the beginning, and once you get into the groove of things, it starts to be a bit more day-to-day normalized routine.

Ashley: So, Jamie, I was curious, you mentioned this earlier, talking about like, support, get people on your side, who can advocate for you having support. So for both, whether it’s a parent, whether it’s the individual, I would like to talk about building a support team that’s like a team of professionals.

Sam: So like treatment team.

Ashley: Yeah, a treatment team. Who can somebody have on their treatment team? Who is important? What do they need here to be able to manage both these allergies and autoimmune stuff and potentially a current or active eating disorder and or be an eating disorder recovery? Who do we need?

Jamie: Yeah, support team is definitely pretty essential when someone is navigating both an eating disorder and food allergy diagnosis or intolerance, so that the team can monitor and evaluate various aspects of their physical health, their emotional wellbeing, their nutritional needs in a way that feels sustainable and safe for the client. This is not always possible, but a multidisciplinary team that connects to each other, speaks to each other and can share information is really, really helpful because of the advocacy piece, you know, being on the same team, on the same side, so that the client feels like their health is being taken care of. I think some professionals that would be crucial to the team, one is the registered dietitian, specializing in eating disorders, I think can address both their medical nutrition needs, and their relationship with food. And some for someone with food allergies or intolerances, we can help create a flexible personalized meal structure that I can accommodate for these dietary restrictions, for not only the client, but also the family, while also supporting recovery from disordered eating.

A therapist specializing in eating disorders as well. There is often a lot going on, lots of moving parts for someone navigating these challenges and they can be quite complex. So working through certain fears and anxieties that arise around food, social events, family dynamics even is quite important.

An allergist or immunologist for individuals with diagnosed food allergies or intolerances. I think an allergist plays a key role in the allergy management piece that I was talking about before. Just to ensure that the medical needs are being met, there’s a clear understanding of what foods need to be avoided and what’s safe to consume. So this can often reduce the uncertainty and just the anxiety that comes with the food restrictions.

A gastroenterologist in the case where food intolerances are a concern, if there is let’s say IBS or lactose intolerance, a gastroenterologist can be involved to help manage digestive health or do some testing with granny related conditions. And speaking of testing, I think the primary care physician is often a foundational part of the team because of the overall monitoring of health, conducting routine medical testing, blood testing, that sort of thing, even prescribing medication. A psychiatrist can also do that too, but let’s say the anxiety gets to a point where it would be beneficial for anxiety medication to be involved in this person’s treatment plan, then a psychiatrist or a PCP can be a pretty crucial part of the treatment.

Sam: Such a good reminder that families don’t have to do this alone, that there’s an entire team that hopefully can help them navigate all the moving parts of what is a very complex situation. So Jamie, I know you’ve listened to our show before, so you probably know we love a good success story. And I was wondering if you had any success stories you could share with us today to give some hope out there to our audience.

Jamie: Absolutely. Yeah, I can imagine, you know, people may be listening to this and go, wow, this is so complex, requires so much work and recovery from both an eating disorder and a food related medical condition is often more a marathon than a sprint. But once you find your system, your groove, your own definition of normal eating, in all of these aspects, I’ve seen success stories of it being quite manageable day to day. And that’s often some of the most rewarding aspects of my work as well. And so one that I can share is a client in particular, she’s an adult. She’s had allergies sort of her whole life. She developed ARFID and a fear of getting sick, of getting allergic reactions, after a diagnosis of MCAS, the Mast Cell Activation Ayndrome. So these are when allergies can sort of hinge on you sometimes even it’s just an over activation of the mast cells. She came to me being hungry and quite isolated, just not sure what to eat and not feeling well because of it. And so with making an exposure list, or at least at first, just making a safe list, we did like a safe, medium safe, medium safe could be like, I’m sure sometimes, yes, sometimes no, like this food can agree with me, and a completely unsafe list. So we sort of know where to start and often it’s starting with just the safe foods, establishing the food safety so that our brain is not constantly in scarcity mode and this person is well-nourished. Then it’s making an exposure list and sort of introducing foods that feel worth it to her to start introducing, and so it was working through that, then it was working through dinner parties. Like she loved hosting and she stopped hosting for a chunk of time because of this. She’s also stopped traveling, so we had navigated through like the first, you know, road trips and then the international trips, lifestyle changes. So there’s a lot that can come in that are more than just the day to day. But I think just having the foundational, you know, “how can I just work through getting up in the morning, making my food, preparing dinner for my family, going to bed.” And after that was established, I think there was she felt a lot of relief from that.

I can share another client who went through a bit of yo-yo dieting through her young teens and ‘20s. And it’s a prime example of how dieting is just so attractive when it can seem like a fast solution to heal their gut, and that’s what she was trying to do. And so a lot of our work was working on the desire to, to problem solve this, like I have to do like the next thing I have to like, actually do something about it, and helping her explore and see like the pros and cons associated with that behavior. And nearing the end of our work, she actually had better results. Like, she also had diabetes too, so her blood sugars normalized, she was feeling better and she would never imagine that would happen with eating the amount of food that she was eating, which was a much more adequate amount of food. And because of that, her anxiety lowered as well. So a lot of, you know, good things can happen from just uncovering the layers and also working on nourishing your body again and refinding sort of your relationship with food.

Sam: Mm-hmm. A lot of unexpected, welcomed side effects to actually nourishing yourself.

Ashley: Yes. But I might want to highlight there though that that means that they might have to lean into something that actually feels uncomfortable initially. Is that true to get that greater reward?

Jamie: Yes. Yes, and might I add as well that, I think you made me think of this, Ashley, is when someone goes through a period of time with dietary restrictions, sometimes they see like weight fluctuations that then get, you know, get very, they get very hyper fixated on the weight fluctuations. And that can contribute to a lot of the feelings of anxiety and the disordered eating as well. Sometimes there’s that to navigate is, you know, as we’re trying to figure this out, there’s not a lot of room for the body to like do its thing because you’re trying to keep it at a certain weight and you’re not allowing it to, you know, to do its adjustment. So I think that plays a big, a big role too with a lot of these clients.

Ashley: So what I’m hearing, what I’m taking away is that it’s really important. If we can access it to access support really, really from a nutritionist and an allergist in this sense, if these are some of the issues that you’re going through that you can really, in your position, help them navigate, kind of like learning how to walk again, kind of like relearning their parameters, you know.

Jamie: Absolutely. Building your support system, surrounding yourself with a team of professionals and loved ones who are supportive of your journey and who understand both the medical and emotional aspects of the recovery process can really make all the difference.

Ashley: Yeah, Jamie, thank you so much. Okay, I’ve got one more question for you and that is, as we sign off, what is one thing that you want our listeners to take away from today? That’s a big question.

Jamie: Yeah, it is a big question. And I think we touched upon a lot of them today, including building the support system. I think one last note maybe I’d like to put in there is the self-compassion piece can actually go a long way. I think navigating an eating disorder with all these immune conditions is challenging and often it can get very frustrating. It might feel like your body is failing you or is going against you. And self-compassion in the form of curiosity, just observations, neutral observations, learning about what’s going on. Using language like noticing externalizing some parts. If you do parts work or IFS work, it’s tuning into, you know, your different parts. And I think these things can bring a little bit of compassion into this work.

Ashley: Awesome. And how can our listeners get in touch with you if they’d like to connect?

Jamie: Yes. So our practice in the States just rebranded to Fueling for Recovery, so our website is fuelforrecovery.com.  And if you’d like to get in touch with me directly, my email is jlee, that’s [email protected].

Ashley:  Awesome. And we will make sure we add that to all of the information about the show.

Jamie: Perfect. Thank you so much.

Sam: Thank you, Jamie.

Ashley: Thank you for listening with us today on All Bodies. All Foods. presented by the Renfrew Center for Eating Disorders.

Sam: We’re looking forward to you joining us next time as we continue these conversations.

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