Eating disorders & other health conditions

Dr Angelique Ralph

Is the health condition impacting the eating disorder or is it eating sort of impact on the health condition?

Lizzie Calder

The big challenge for me was that it gave me an excuse not to eat. I really, really used the celiac disease as the reason not to eat.

Ange Khoudair

I became addicted to this cycle of restriction. There was a mix of me self medicating when I wasn’t seeing a professional and professional is actually giving me these diets.

Shannon McDonough

There’s diet culture and then there’s diabetes, diet culture, Sam. So, we’ve got that many things thrown at us.

Sienna Wiltshire 

I realized that if I withheld my insulin that I need for my diabetes that I wouldn’t gain weight.

Sam Ikin

This is Butterfly: Let’s Talk, thanks to your national voice for body image issues and eating disorders, Butterfly. I’m Sam Ikin Thanks for joining us. We know that treating an eating disorder can be complicated and difficult for all kinds of reasons, but when you’re managing an eating disorder and then a co-occurring medical condition, that can add a whole new layer of complexity and there are some conditions that it’s really not uncommon for eating disorders to coexist with. These can include celiac disease, diabetes, I. B. S. Endometriosis and other hormonal disorders and many others.

Dr Ralph

All diets or things that are restrictive in either the quality or the quantity of food can absolutely lead to triggering eating disorders and disordered eating.

My name is Dr Angelique Ralph, but everyone just calls me Angie, and I am a clinical psychologist. I’ve been working in public and private sectors as well as adult and youth. Mental health for quite some time now and I’m also the research lead at the National Eating Disorders Collaboration or NEDC for short.

Sam

Dr Ralph says medical conditions that often co-occur with eating disorders are ones that have particular dietary requirements and they often require restriction in some particular way or another.

Dr Ralph

Largely restrictive eating disorders such as Anorexia Nervosa. There’ll be a lot of physical complications with that, which can then also reinforce that restriction and that kind of cycle can go round and around. Similarly though with Bulimia Nervosa and Binge Eating Disorder, which also often involve impacts of restriction as well. Sometimes it’s a little bit less, less clear in terms of is the health condition impacting the eating disorder or is the eating disorder impacting on the health condition? And often it’s both and often they’re therefore reinforcing each other.

Lizzie

My name is Lizzie, I’m 30, nearly 34. I am working education, I’ve taught in high schools, taught English, Italian and English as an additional language. I am recovering from a restrictive eating disorder and I also have celiac disease, so very happy to be here, very happy to share my story.

Sam

So, Lizzie, the Italian language teacher was living in Italy when she realized that she had a problem with gluten.

Lizzie

I felt like I wasn’t able to process gluten in particular, which is a large part of Italian cuisine by the time you do bread, pasta and pizza. I just felt like my body wasn’t able to process it in a way that it had been able to previously. It was also quite a big change to my diet because one of my parents had celiac disease.

Sam

Having another celiac in the family, Lizzie was pretty sure that that’s what she had too, but to get diagnosed, she had to adopt a very strict eating plan.

Lizzie

That was a really challenging couple of months because they put you on a high gluten diet. I already knew that I wasn’t tolerating gluten particularly well, so yeah, I had to eat two pieces of bread a day, minimum equivalent gluten bread. For someone recovering from a restrictive eating disorder, that’s a challenge in and of itself, let alone containing gluten, which I was at that point 90% sure it wasn’t agreeing with me.

By the end of those two months, I was pretty miserable, had terrible bloating, I looked like I was pregnant. And indeed, when I arrived at hospital for the gastroscopy, my specialist took one look at my stomach and was like, I think I could probably diagnose you just by looking at how swollen you are. I’m really sorry, you had to go through this, but you know, they have to sort of definitively see damage. Um but that was, that was not a fun two months, and I did not feel well or good in my body.

Sam

Dealing with the changes associated with the diagnosis of celiac disease is difficult for anyone and for Lizzie, it was even more complicated because of her underlying eating disorder.

Lizzie

So my eating disorder sort of started when I was in early adolescence. So it had been around for a while by then. I think the big challenge for me was that it gave me an excuse not to eat. You know, in that first year of diagnosis, I graduated undergrad, I started a teaching program. It was quite stressful. And so my eating disorder flared and I really, really used the celiac disease is a reason not to eat. Like I can’t eat this because I have celiac disease or, you know, I’m not going to advocate for myself in an in-residence program where they’re feeding me because I have celiac disease and they’re not doing a good job.

Sam

It’s not always clear to people who aren’t experts whether restricting behaviours are occurring appropriately to mitigate the symptoms of an illness or if it’s behaviours associated with an eating disorder.

Lizzie

It was one of the worst periods of, of restrictive eating that I’ve had. I wasn’t help seeking in terms of that, so it made it quite difficult for my GP to manage me. I did well seeing a psychologist, but I refused diagnosis. I refused referrals to psychiatrists and my gastroenterologist who is a terrific doctor, really didn’t know what to make of the weight loss, and was sort of flabbergasted and really trying to find a physical reason why I was unwell.  Even though I had quite a blunt conversation with him about what a restrictive eating disorder involved, like it was almost like being in a movie or a television series, he just didn’t understand and I don’t think knew anything about eating disorders.

Sam

The coexistence of two health conditions can be extra difficult for patients and really challenging for clinicians who are trying to manage their care. In some cases, food is blamed for disease symptoms, but this isn’t always certain. In other cases, restriction and disordered eating is a reaction to treatment. For example, things like the fear of weight gain.

Sienna

My name is Sienna Harmony Wiltshire. I turned 27 3 weeks ago, and I live in Sydney Australia. My dad’s a type one diabetic. So, when I was about seven, my mum saw symptoms in me. Um Like I was urinating a lot, I was wetting the bed, I was constantly drinking litres of water and like I had a certain smell kind of like acetone on my breath and that’s a sign of diabetic ketoacidosis. So that’s a dead giveaway that you’re diabetic.

So my dad came over and checked my blood sugar. And sure enough I had type one diabetes and I took it all pretty well. I thought I was pretty cool. You know, it was something I could relate to my dad with. So I just went to the hospital for a week, thought I was cool. I was in year two, so I got day released to go to the school disco and life kind of went on from that. Um, I was finally that my blood sugars were really well managed up until I was about 13 years old.

My whole life, I was a bit funny about my weight.

Um, my mom was very underweight growing up. So, when I was about eight years old, she only weighed, you know, less than 10 kg more than I did. And to me it wasn’t that she was underweight, it was that I was fat. So, a child shouldn’t be thinking like that. But um, I did. And then I remember weighing myself for an activity we were doing at school, and I was so stressed because I weighed more than other people. And you know, that’s just so unnecessary for a child that wasn’t even in year six yet. But um, it just played with me a lot. I was in counselling from the time I was five for issues that my mum saw, but it didn’t really start affecting me much until I was in high school.

Sam

It was about at this stage that Sienna started messing with her life saving insulin as a way to control her weight.

Sienna

It was about before my 13th birthday that I started doing that and I did it straight through until I was you know about 16 and it was horrible, you know, I was in physical pain all the time, I couldn’t walk most days, I used to be so weak, you know, I’d be rushing to the toilet three times an hour, I’d be up, you know, 10 times a night going to the toilet and my mom would yell at me, you know, do your insulin, Sienna, please. But I just pretended there was nothing going on. I told myself that, you know, like if anyone had the ability to do that kind of thing and lose the amount of weight that I was losing, they would do that.

Sam

So, Sienna’s story is heart wrenching and believe me, we’re only just starting. But her strength and determination to bounce back from all that she’s been through is absolutely phenomenal. But I thought this might be a good point to bring in an expert who works in the diabetes field.

Shannon

People living with diabetes are up to three times more likely to develop an eating disorder. It’s quite staggering really. We’re looking at around 35% of those living with diabetes also experiencing disordered eating or actually living with an eating disorder. So, it’s a high risk category.

My name is Shannon, I’m an accredited practicing dietician. I also have a master’s of counselling. So have done work in the counselling and mental health space. I’m currently doing work in both spaces. I also lived with type one diabetes and have lived with diabetes for more than 33 years. So it’s been a ride.

Sam

Health workers like Shannon really need to be aware of the risks associated with treatments requiring special diets and food restrictions, and they really need to be aware of any signs of risk with any of their patients.

Shannon

There’s diet culture and then there’s diabetes, diet culture, Sam. So we’ve got that many things thrown at us that we could try. Um and most of it we come across there’s a lot of food rules, so there’s a lot of emphasis on dos and don’t, good and bad this way, not that way. Um and I guess it absolutely contributes to you know, there’s those additional layers of complexity when it comes to relationship with food for people living with diabetes.

So, in answer to your question, I absolutely come across every single day, people struggling with their relationship with food, people distressed about managing their food intake with their blood glucose management, and their body in general.

I absolutely talk to people about the importance of relationship with food, the health at every size paradigm and the option that is there, and that there is another way – there’s this huge emphasis on weight as well with diabetes and that can be a real driver for people as eating disorders go, and I don’t know Sam if you’re aware of the term “Diabulimia”  for people living with diabetes.

Sam

I’m glad that you brought it up. So yes. Please tell us about it.

Shannon

Diabulimia is a term that refers to an eating disorder specifically in a person living with diabetes and it’s typically type one, because that’s a total dependence, their dependent on their insulin to live.

Sienna

If you don’t do your insulin, your body eats itself, pretty much it attacks all of your organs, it eats all of your fat first and then everything that you put into your body pretty much just burns up.

Shannon

And so it’s actually characterised by the restriction of insulin in order to control weight. There can be different reasons for that occurring. It can be body image issues. It can be the desire to lose weight. It can be diabetes burnout, so it can be overwhelmed that can trigger it. So, I’m going to stop taking my insulin because this is all too much and then that can sort of spiral from there, I guess.

It can even be traumatic stressful life events not associated with diabetes and a way of controlling something. So, I know that if I manipulate my insulin then I can control my weight and that’s something I can have control of for sure, that’s a certainty in my life, because so much of living with diabetes as well is about acceptance that a lot of the time we can do our very best and things don’t work out the way we planned.

Sam

So, let’s go back to Sienna. And she was beginning to get on top of her behaviours in year 11, when a pain in her stomach turned out to be gall stones, it was a condition that needed surgery to fix. But then she faced a three month wait for the procedure.

Sienna

While I was waiting for the surgery, I got another complication from keeping my blood sugar’s higher, which was peripheral neuropathy. And um, for the first year or so with that, all of the nerves in your legs are exposed, so your skin is still there, everything looks normal, but you can feel everything like you from like, air hitting your legs from, you know, the pants that you’re wearing touching your skin, from the water in the shower, it’s like your legs are on fire.

Three days after my 17th birthday, mum finally couldn’t take it anymore. So, she called an ambulance, and I went to the hospital and they told me that I was probably too frail for the surgery because I wouldn’t recover. And then I said, look, if I don’t get the surgery, then I’m not going to recover anyway because I can’t eat, you know, I’m in too much pain for this and we said, look, we’ll wait on it a little bit? And then the next day I had a heart attack.

Um I was trying to take myself to the toilet in my hospital room, which I knew was stupid because I hadn’t walked by myself in about, you know, six weeks or so. So, um me trying to get up and go by myself was a bad idea and I made it to the end of my bed and then I woke up the next day. They removed my gall bladder and um they started medicating me for my legs too. So, I woke up from that surgery and instantly I felt, you know, not normal, but I felt better and I sound like I’m exaggerating that, but I’m not at all. Like I woke up and it was just like real instant relief.

Sam

I’d like to say that that’s the end of Sienna’s traumatic experience, but there’s more, we just don’t have time to go through it all in a half hour episode. The idea of eating disorders co occurring with other health conditions raises the important question of which one do you treat first?

Dr Ralph

Health conditions don’t occur in silos and neither should their treatment. So, things to look out for would be the impact on a person’s life and that is, can go across a variety, in fact, all domains. So it might be social aspects  and not being able to eat with other people or withdrawing from people socially.

Are you able to function at your job, are you able to do your job? Are you able to concentrate at school or whatever life stage are at? Or are you preoccupied with food? Or do you have an impaired kind of concentration from your eating disorder?

Ange

My name’s Ange and I am 35 years old and I have a lived experience with disordered eating and endometriosis. For a really long time, I actually didn’t know that that’s what I was living with.

Quite a long time ago, probably 10 years ago, I was having a lot of digestive symptoms, um that sort of manifested actually out of a period in my life where I was dieting quite a bit. These digestive symptoms, I was searching for quite some time, seeing various doctors, trying to understand what was going on and this, process lasted like probably five years. And um eventually through all the doctors that I was seeing, I got to a gynaecologist and he diagnosed me with this condition called endometriosis, which I had absolutely no idea about. And at that time, I was quite like, I wasn’t really understanding what was going on, because there was no explanation. All I knew is that this was a gynaecological issue, but the symptoms that I was dealing with were digestive.

He basically said there’s nothing we can do for endometriosis if you want to come back and see me when you’re thinking about falling pregnant. We know at this point that that can have an effect on how you feel symptomatically.

When I was given this diagnosis and wasn’t able to control it, I started to read a lot and started to try controlling this with my food and what I was eating, and symptoms with digestive also comes from not being able to go to the toilet properly, hurting when you have bowel motions, lots of bloating. So in my head I thought, well if I eat less or if I eat things that are better for me, perhaps I can help how I’m feeling.

Sam

Frustrated that her doctors couldn’t help her with the symptoms, Ange turned to a naturopath.

Ange

She gave me a gut protocol and this gut protocol without really discussing with me any sort of past history that I had. It was designed to lower inflammation in my body and that involved cutting out certain foods. And I was given a strict protocol to follow for about two weeks. And I found very quickly that I attached to that idea of like a tablet that a doctor gives you, you’re supposed to feel better within two weeks of this gut protocol.

And I didn’t, my symptoms weren’t going anywhere. So, um I went to another naturopath, and another and another. There was a dietitian in there. There was a nutritionist in there. And so that was sort of, there was a lot of elimination diets that I had to do.

Even recently, I was seeing a nutritionist who’s actually body positive as well and she is anti diet, but she put me on a diet which is which can help some people. But for me my history doesn’t really allow for that sort of thing unless it’s really carefully guided.

So there was a mix of me self medicating when I wasn’t seeing a professional and professionals actually giving me these diets. So I wasn’t fuelling my body. I became so afraid of things rather than adding good foods into my diet, nutrient dense foods into my diet, I was removing things because I was afraid. And so anyone with the health condition knows that if you’re not properly feeding yourself, it’s important to give your body what it needs. And I wasn’t doing that.

And then also I think worrying about, “oh my gosh I’ve got to heal the endometriosis or fix the problem with cutting out this or cutting out”, that that’s placing a lot of stress on my body. And as we all know stress on the body doesn’t help.

Sam

Pretty much all of the conditions that we’ve had on this show, tell us that recovery takes a team. You need the support of your family, friends and carers as well as professionals like your GP, psychologist and dietitian. Dr Ralph says that when you’re experiencing a co-occurring medical condition, the doctors that you’re seeing for that condition also need to be brought into the team.

Dr. Ralph

What people forget sometimes is other specialists and other health professionals need to be included in that. They need to be included in communications and all meetings, case conferences and those things because everything that we’re doing is impacting another part of our health and considering eating disorders have so many physical and psychiatric complications as well as co-occurring conditions it really does need a team approach.

Lizzie

Now I work with my G. P., have a psychologist, I see a nutritionist and a psychiatrist um and depending on how I’m doing like I can meet with them more regularly or less regularly depending on how I’m feeling. Learning to take responsibility for myself and recognizing that it’s my job and my privilege to take care of myself and my body has been really empowering.

Ange

If you can fail and fail and fail and then get up again. That is that’s actually the journey like that’s the that’s when you’re healing. Like that’s actually healing and I didn’t see that if I have a bad day yesterday and I wake up today and I go actually I’m feeling okay today, it’s recognizing those things.

Sam

For Sienna, the current holistic approach that Dr Ralph and other clinicians are now recommending that is including doctors, dieticians, psychologists and counsellors in one comprehensive treatment team makes a lot of sense. Especially when it comes to diabulimia.

Sienna

From the time I was 13 until pretty much now it hasn’t been recognized in Australia and it breaks my heart seeing people going through the same thing. Because the last thing in the world I want is for anybody to be in the same position as me right now.

Sam

Do you think that if this had been something that was acknowledged and was being more widely treated, that way back when you were 13, that could’ve helped?

Sienna

I would’ve been fine right now. If I had the help that I needed back then I would have been okay.

Shannon

All I would say to someone if they’re listening and they feel like any of this resonates. Talk to people, talk to talk to your loved ones. Talk to your healthcare professionals, get the support you need. It’s out there. You’re not alone.

Sam

And in Australia that support is just a phone call away. There are trained clinicians ready to take your call seven days a week from eight AM until midnight. The number to call is 1 800 33 4673. Or if you prefer letters, it’s 1800 ED HOPE.

If you’re a clinician and you’d like to be listed on the Butterfly Referral Database, please contact butterfly at referraldatabase@butterfly.org.au.

For all diabetes related inquiries, Check out the Diabetes New South Wales website. They’ll be able to point you in the right direction wherever you are. Go to diabetesnsw.com.au

And for all other health concerns, a good place to start is Health Direct.

That’s health direct.gov.au Or 1 800 022 222

This show is produced by Ikin Media for Butterfly Foundation, Huge thanks to Camilla Beckett and Kate Mulray from Butterfly, especially this month with the arrival of my new baby. Thank you guys.

Our guests this week were Dr Angelique Ralph, Shannon McDonough, Elizabeth Callder, Sienna Wiltshire and Ange Khoudair.

Thanks for joining us again on Butterfly: Let’s talk. And if you’d like to help us out, one thing you can do that we would really appreciate, is to leave us a review or give us a rating wherever you get this podcast, and of course share it with anyone who you think could benefit from it. I’m Sam Ikin, thanks for joining us.