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Diabetes and Eating Disorders: An Expert Answers Questions about Symptoms, Treatments and More

Young women who have type 1 diabetes are 2.5 times more likely to develop an eating disorder. That's a staggering statistic. To learn more, I recently interviewed Jenaca Beagley, MSN, APRN, NP-C, CDE ED-DMT1, an eating disorder and diabetes treatment specialist with Center for Change in Orem, Utah.

woman looking in mirror, displeased with her bodyA strong focus on food is part of life when you live with diabetes. For some people, that focus can trigger dangerous disordered eating behavior that can have long-term and serious health consequences. (Photo:123rf)

Quinn: What is your professional role?

Jenaca: I am a nurse practitioner at Center for Change, which is a specialized hospital for treating eating disorders and has a specific program for diabetes. So, my role there is not only nurse practitioner, but I am the diabetes team leader and diabetes educator.

I meet regularly with all of the patients with diabetes which includes making  medication and insulin adjustments, and answering questions but I think my biggest role is being a cheerleader for the patients. I support them on their path to recovery from an eating disorder but because diabetes does not have a cure right now, I also help them manage their diabetes as they progress toward recovery.

Q: How did you get interested in working with women with eating disorders?

J: I was always interested in the unique combination of diabetes and eating disorders. I worked in a diabetes clinic for a long time and I treated women there who disclosed to me that they had an eating disorder. 

Q: What is so unique about the ED-DMT1 (Eating Disorder-Diabetes Mellitus Type 1) program at Center for Change?

J: I think a few things make the program at Center for Change unique. First of all we have a dedicated diabetes team that has personal experience with diabetes. I live with type 1 diabetes myself but our consulting endocrinologists also have type 1. We also have staff nurses that have type 1, or have family members who do. We are wll well drained in diabetes. Our staff has compassion that starts at the top of the company and trickles down. 

Q: Can you also confirm that something else unique about the program is that it's one of the few inthe United States that has a specialty treatment track designed specifically to treat women withtype 1 diabetes and an eating disorder, correct?

J: Right, so we do have a specialty team where we have not only medical providers but we have therapists and dieticians who specialize in diabetes as well and we have a diabetes specific group that’s headed by one of the therapists.

Q: Why would you need a specialty program to treat patients with these two illnesses? What's so unique about the two illnesses?

J: I think the most challenging thing about treating an eating disorder with diabetes is that you can recover from an eating disorder, but there’s not a cure for diabetes. Many of the things that we do just to manage diabetes everyday can be so triggering to someone who has an eating disorder. So that’s why I think it’s so challenging to treat someone with type 1, but it is possible.

Q: Can you give some examples of what someone might be doing for their diabetes that might be triggering an eating disorder for someone who’s also in recovery?

J: When you live with diabetes there is a real focus on food. Someone with type 1 no longer produces insulin, which we know is a hormone that helps our bodies to absorb carbohydrates to keep our blood sugars in a healthy range.

If you have an eating disorder, that focus on food can be very triggering. You have to count every carbohydrate that goes into your mouth. Also, the focus on numbers, monitoring our blood sugars, even being weighed at our appointments that we go to.

We also need to get insulin and sometimes our providers tell us that taking insulin will cause weight gain—all of these things can be triggering if you have an eating disorder. In fact, one eating disorder behavior that I’ve seen women use to lose weight is to stop taking their insulin because as you stop taking your insulin, your body is not getting those carbohydrates it needs for energy so it looks for other sources and starts breaking down tissues and also starts losing a lot of glucose by secreting it through the urine. So, your body is losing a lot of calories that way when you stop taking insulin.

Q: I can see how that could make it so challenging and why you would really need a comprehensive, dedicated team who understands eating disorders as much as diabetes and how they work together and against each other. Why is there so much confusion around the use of the term diabulimia and ED-DMT1 and can you explain the difference because I think there is a lot of confusion out there. 

J: A lot of times those terms are used interchangeably, however, the term diabulimia is a term that’s used more in the media. And it’s very catchy, kind of rolls off the tongue, but the definition of that term really is when a person omits insulin for weight loss as I described earlier. So, it’s purging those calories by not taking insulin—that’s the bulimia part and the “dia-” is the diabetes part.

But that doesn’t incorporate all of the other eating disorder behaviors that someone might engage in when they have an eating disorder so ED-DMT1 really encompasses it all. Not only insulin omission but maybe other disordered eating behaviors for weight loss such as restricting calories, cutting carbs completely out of their diet, over exercising, taking laxatives or diet pills. These are other behaviors that may not be included in the diabulimia term, if that makes sense. ED-DMT1 is the term that you’ll see most commonly in medical research.

Q: Is ED-DMT1 a different diagnosis than diabulimia? Or are they the same thing

J: They are not the same thing. But I think diabulimia is more commonly used for someone with type 1 diabetes who does not take their insulin to lose weight or keeps their blood sugar high to lose weight.

Q: You and I presented research you did at the American Association of Diabetes Educators (AADE) conference in Baltimore (August 2018). Can you explain how you conducted your research and talk a little bit about what results surprised you the most—maybe elaborate on the misconceptions out there that having an eating disorder with type 1means the person is omitting insulin for weight loss.  

J: When I started working at Center for Change, I guess I had an assumption that all the patients that I would see would be patients who were not taking their insulin to lose weight, I mean that’s such an easy thing to do if you have type 1 diabetes. You literally don’t do anything, you just don’t take your insulin and you can eat whatever you want.

I started asking them questions about which eating disorder behaviors they engaged in. Insulin omission, self-induced vomiting, over-exercising, eating disorder behavior questions, and so I would have them kind of rank themselves based on behavior. For insulin omission, for example, they would rate themselves on a zero to five scale, zero meaning they never omitted their insulin, one they barely, usually, often or they always omitted their insulin.

And I was surprised that there were more patients that said that they never or rarely omitted their insulin for weight loss, meaning they were engaging in other behaviors to help control their weight and so that is what really got me interested in doing more research.

I started to look at their average A1C and their average blood sugar over 3 months and if someone is omitting their insulin then their blood sugars are going to be high and so then again, I assumed that everyone that was coming in for eating disorders would have extremely high A1Cs. But that wasn’t necessarily the case, the patients that said they never or rarely omitted their insulin, their A1C average was still 9% and my assumption was that they would have a lot lower A1C if they were actually taking their insulin.

Then the other patients who admitted to not taking their insulin, their A1Cs averaged between 10 and 11% so they weren’t extremely high, they weren’t off the charts. It was measurable, but they were keeping their blood sugars high to lose weight. So that was some interesting information.

Another point that I thought was interesting was that there was a question of did they feel fat when they took their insulin, using the same kind of scale of “I never feel fat when I take my insulin” versus “I always feel fat when I take my insulin” and almost 75% of them said they felt fat when they took all of their insulin. So even those patients that were taking their insulin and not omitting their insulin for weight loss still said that they feel fat when they take it and I thought that was interesting in the research as well.

Q: There’s just not a lot of research on people with eating disorders and type 1 in the United States, and so I think the research that you’re doing is pretty groundbreaking, especially to dispel a lot of the misconceptions about people with ED-DMT1 and that it’s not just insulin omission.

J: I think that’s another reason why treating people with diabetes and eating disorders can be so difficult because it’s not a cut and dry thing. It’s not as easy as “just take your insulin” or “just eat.” It’s so much more complicated than that.

Q: It’s very complicated. You know that well because you’ve lived with type 1 diabetes for nearly 29 years.

J: Actually, that information is a little off, I’ve lived with it for 31 years in January. That’s my dia-versary. I’ve had diabetes for a very long time.

Q: What are some of the biggest changes you’ve seen for yourself and patients over the years, in the world of diabetes and diabetes self-management?

J: I have seen so many changes and I don’t even feel that old. Three decades of diabetes, I think the biggest changes in my life have been with the little things in just managing diabetes. I think when I was diagnosed, I was taking regular and NPH insulin but then Humalog came out then Lantus. It was such a life changer for me. I could actually have more flexibility in my eating and I felt like I could live more of a normal life. I wasn’t imprisoned by my timing of meals.

Then insulin pumps and continuous glucose monitoring. I think that one advancement in diabetes care has been the biggest change in my life. At center for change actually, this year, we’ve started to monitor all of our patients with diabetes with CGM and for those patients that have never used a CGM before, I think its life changing for them, as well. So that’s probably the biggest change that’s helped me and my diabetes management.

Q: What inspired you to choose a career in medicine? Did it have anything to do with you growing up with diabetes?

J: Definitely. I think growing up with diabetes inspired me to become a nurse. I think by the time I graduated high school, I thought I was an expert in giving injections. Being a nurse was just a natural fit. My parents encouraged me to find a profession that would be helpful long-term with my diabetes management, too. So, I think diabetes definitely was the biggest thing that inspired me.

I have kind of a funny story about when I was diagnosed, I’m from a small rural town and I spent about 2 weeks in the hospital and when I was discharged from the hospital, I went back to my second grade class, I had missed so much of school that they wanted me to tell all about it so when I was well enough to go back, my teacher invited me to teach the class about diabetes so that probably inspired me a bit to become a diabetes educator.

Q: Do you take a unique approach to treating patients with diabetes because you, yourself, have lived with type 1 diabetes for so many years?

J: I’d like to think so, even though it might be subconscious but from a patient’s perspective, I think there’s something about interacting with someone with diabetes. You know? Even if you don’t know anything else about them besides that they have diabetes also, I think that’s a huge connection. Even when we met for the first time, Quinn, I thought “well she has diabetes too,” you just have this huge connection and the more you can connect with someone, the more comfortable you are with them, the more you start to care about them and how they’re doing. I think that’s definitely an icebreaker for me and hopefully, I have more of a gentle approach with patients.

Q: Absolutely, I think that’s a huge benefit that you bring to the equation. Given your unique personal experience and your professional background, what advice would you give to healthcare professionals to best care for patients with type 1 diabetes and an eating disorder?

J: That’s a really good question because I think I learned so much working with young girls and women with eating disorders over the past few years. I almost wish I could go back to my diabetes practice i was working in and see those patients that were struggling with eating disorders because i think having a weight neutral approach as well as the language we use in diabetes. When we’re meeting someone with diabetes, we have such a focus on numbers. I remember circling all of the low blood sugars and all of the high blood sugars, asking patients about specific days, what we can do better, what we can change, and some things that just aren’t the right approach.

Even as patient, we feel judged when we go to meet with our diabetes provider so having a non-judgmental approach and changing our language a little bit. Instead of saying “We’re going to test your A1C,” that kind of denotes a pass or fail when it’s really not a pass or fail thing. It’s more of a compass, not a report card. “We’re looking at your A1C to see if we need to change direction.”

I think having that type of tone in our language can really change our conversation and change the way that we treat and care for a patient with diabetes and an eating disorder and I think it can really help them and hopefully motivate them to come back and find the recovery that they’re looking for in their eating disorder.

Q: I think that’s great advice, Jenaca.

J: Yeah, because having diabetes is hard. It changes all the time. I’ll tell my patients, you can do the same thing and it will work out great, eat the same thing, take the same amount of insulin, and one day, your blood sugar is in the range you want them to be and the next day it doesn’t work. And so we have to make adjustments. It’s not going to be perfect all the time but we need to have a plan in place and make adjustments as we need to.

Q: Yeah, it depends on the day, it depends on what’s going on. It’s kind of like walking on a tightrope and you’re balancing plates on your head while juggling. You hope for the best and to see where everything lands and its just life with diabetes.

J: And that’s another thing, controlling your diabetes. That insinuates that if you do everything, you’re supposed to do that your blood sugars are going to be perfect and we know that that’s not the case. So I think management is a much better term to use.

Q: Can you talk a little bit about how you treat a person who has diabetes and an eating disorder? I’m just so curious about the treatment, do they not realize that running their blood sugars high is very dangerous and harmful to their health? Could you talk about that? I’m thinking you probably don’t use scare tactics because maybe they’re going to fall on deaf ears. I'm also curious about the typical length of stay in a residential facility.

J: Okay so, your question was don’t these people realize that not taking their insulin is very harmful and the answer is yes. They definitely realize this. That’s another reason that eating disorders and type 1 diabetes is so hard to treat because logic doesn’t really work all the time. It’s not that simple to just tell them “take your insulin. Don’t you know that you could have diabetes complications because of this?” so the treatment is very comprehensive, I guess you’d say, they’re multidisciplinary.

There are multiple treatment approaches. Not one particular treatment is going to work for everybody so at center for change, there are so many different therapies that patients are exposed to find what works for them. So that’s part of the comprehensive treatment with groups and with their individual therapists to find what works. It could be a different therapy or group therapy.

Then as far as diabetes management, some things that might be different treating someone with an eating disorder versus who’s been omitting their insulin. One thing is lowering blood glucose level gradually. Over time, we definitely want their blood sugars to be in a healthy range but going from extremely high blood sugars and lower blood sugars overnight isn’t the best treatment option because the patient’s body has gotten used to functioning with a high blood sugar level and if we lower them too rapidly they feel like their blood sugars are low when they’re actually in the normal range.

They also can have worsening neuropathy or retinopathy because of their rapid change in their blood sugars. So, there are some things we might do differently because they’ve been omitting insulin for a while where it wouldn’t be a normal approach to diabetes, if that makes sense.

Updated on: February 28, 2019
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