February 2020 Issue
Diabetes: Eating Disorders in Type 1 Diabetes
By Hadley Turner
Vol. 22, No. 2, P. 14
A Primer on What They Are, Why They Happen, and How RDs Can Help
When Asha Brown was diagnosed with type 1 diabetes at age 5, her father—who also has type 1—taught Brown to manage her diabetes so well that it became second nature to her. In fact, young Brown was proud to be “like her dad.” She and her father were featured in American Diabetes Association fundraising advertisements in the 1990s.
But at age 14, Brown became uncomfortable about having the disease. Learning that type 1 diabetes and taking insulin are associated with weight gain, she began omitting insulin occasionally for energy and weight control. This intermittent habit turned into a routine—omitting or not taking enough insulin, bingeing, restricting food, and then promising herself she’d change, only to repeat the cycle. Brown continued this pattern until she was 24. Now in her 30s, she’s recovered from her eating disorder but lives with several chronic conditions resulting from a decade’s worth of insulin omission.
Until recently, Brown’s condition was called “diabulimia,” a portmanteau of “diabetes” and “bulimia,” and a term with which many RDs likely are familiar. However, this condition now is referred to as ED-DMT1—which loosely stands for “eating disorders in type 1 diabetes”—meant to more accurately and broadly describe the dual diagnosis of an eating disorder and type 1 diabetes.
Brown described her experience with ED-DMT1 to a packed room of diabetes educators and RDs at the American Association of Diabetes Educators (AADE) annual meeting in Houston in August 2019. Her message to practitioners: ED-DMT1 is overlooked and undertreated, and it can kill.
Knowing how to speak with younger type 1 diabetes patients can help RDs not only effectively screen for ED-DMT1 but also avoid and discourage language and patterns of thinking that could unintentionally trigger an eating disorder.
Branches of ED-DMT1
ED-DMT1 can involve any eating disorder seen in the general population, and each manifests differently within ED-DMT1, including in the following ways1:
• Anorexia: Patient will limit or reduce food intake and/or avoid taking insulin.
• Bulimia: Patient will binge with compensatory behavior such as insulin omission, overexercising, vomiting, and diuretic or laxative abuse. This is the most common eating disorder in type 1 diabetes.2
• Binge eating disorder: Patient will overdose insulin to “justify” a binge.
• Purging disorder: Patient will consume food normally with compensatory behaviors involved in bulimia.
In any of these diagnoses, insulin commonly, but not always, is overused, underused, delayed, omitted, or tampered with to render it ineffective when used.2,3 Compensatory behaviors, food restriction, and bingeing also can occur in those with type 1 without the patient meeting formal criteria for one of the previously described eating disorders or the more generalized eating disorder, not otherwise specified diagnosis, as defined in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition; these behaviors are commonly referred to as disordered eating.4
However an eating disorder, disordered eating, and insulin misuse manifest, they all can result in young patients with type 1 experiencing diabetes complications—such as retinopathy, kidney disease, and neuropathy—they might otherwise have encountered much later in life or not at all.
Jessica Setnick, MS, RD, CEDRD, an eating disorder expert and creator of the Eating Disorders Boot Camp training workshop, explains that “dysfunctional eating and insulin behaviors exacerbate the potential long-term complications of diabetes. Whereas appropriate management of diabetes may stave off those complications for the next 30 or 40 or 50 years, problematic behaviors can cause the complications we’re used to seeing in a 70-year-old person at a much younger age.”
Susan Weiner, MS, RDN, CDE, FAADE, a speaker, author, and consultant, who copresented the session on ED-DMT1 with Brown at AADE 2019, adds life-threatening diabetic ketoacidosis (DKA) as a potential consequence of omitted or reduced insulin. In DKA, the body breaks down fat rapidly when it doesn’t have enough insulin to use glucose as fuel, leading to a buildup of ketones in the bloodstream. Symptoms include weakness and fatigue, frequent urination, excessive thirst, nausea and vomiting, confusion, and shortness of breath. Without immediate treatment at an emergency department, DKA is fatal.5
Increased mortality has been seen in observational studies on insulin restriction. In an 11-year study of 234 women with type 1 diabetes (mean age 45), there was a three-fold increased risk of mortality with insulin restriction, as well as higher rates of nephropathy and foot problems. Thirty percent had reported insulin restriction at baseline, and mean age of death was younger among these participants (age 45 vs 58).6
As with eating disorders among the general population, exact figures for ED-DMT1 are unclear due to poor detection. Some studies have estimated prevalence of any eating disorder among the population with type 1 to be 10% to 33%, compared with an estimated 3.8% among the general population.7-9 Risk of onset is greatest during the preteen and teen years for all young people, the age range during which many type 1 diagnoses occur.3
Disordered eating patterns that don’t meet the criteria for a formal eating disorder diagnosis are more common; in one 14-year study of 126 girls aged 9 to 13, nearly 60% at the end of the study (when participants were at average age 23.7 years) reported disordered eating behaviors, with the most common disordered behaviors being dieting and insulin omission. The young women in this study received typical type 1 diabetes care, but researchers noted that eating disorder and disordered eating behaviors—especially and most concerning, insulin omission—increased during the course of the study.7
Overall risk of developing an eating disorder is two to three times higher among women and girls with type 1 diabetes than those in the general population. There’s no incidence data for men and boys, though they, too, experience ED-DMT1.2
Why the Increased Risk?
Why are patients with type 1 so much more likely to develop eating disorders and disordered eating behaviors? The reasons aren’t entirely clear, but it’s thought that the emphasis on food that’s necessary to manage type 1 diabetes is a significant factor. There’s carbohydrate counting, meal planning, blood glucose checks, and the sense of failure when glucose doesn’t fall within the prescribed range.
It’s a numbers game, Weiner says. “A person with type 1 diabetes is counting carbohydrates constantly. They’re constantly timing their insulin. Everything they do is constantly being counted,” she says. Weiner emphasizes that multiple factors affect blood glucose—including hormone levels, stress, and menstruation—meaning it’s unrealistic to expect to have “perfect” blood glucose levels all the time, something many people with diabetes don’t realize. A desire for complete control—a trait endemic to eating disorders and disordered eating patterns—over blood glucose levels easily can lead to distorted views of food and unhealthful eating and insulin behaviors.
Setnick adds that this hyperfocus on food at such a young age compounds the stress of growing up “in a world of disordered eating.” Indeed, adolescents with type 1 diabetes aren’t immune to the typical risk factors for eating disorders and disordered eating, including genetic factors, comorbid psychological disorders such as anxiety and depression, trauma, loss, social pressure, media exposure, and unhealthful/abusive relationships. Of note, depression and anxiety are more common in type 1 diabetes than in the general population, possibly further increasing eating disorder risk.1,3
In addition, the ways in which health care professionals respond to the emotions and visit outcomes of people with type 1 diabetes can trigger—or help prevent—an eating disorder and disordered eating behaviors. When people with type 1 visit with a health care professional, many times they’re viewed only in terms of their A1c or blood glucose outcomes as opposed to as a person, Weiner says. “And if [these metrics are] for whatever reason not within a targeted range, the body language of a health care professional, let alone the verbal language of a health care professional, really sets [individuals] off, and they feel blame, shame, and guilt beyond anything we want them to experience,” she says. “This can sometimes lead to negative outcomes” such as eating disorders and disordered eating.
How can RDs avoid making patients with type 1 diabetes feel this blame, shame, and guilt that can lead to disordered eating or eating disorders, as well as process the emotions that emerge throughout their diabetes journey? Weiner and Setnick, as well as Brown during her presentation, offer the following practice pointers for RDs, which, while they may not all directly relate to eating disorders or disordered eating, can help young patients feel empowered and enable RDs to provide care when emotional challenges arise:
• Look for clinical and behavioral signs of eating disorders and disordered eating. Certain red flags may pop up throughout treatment that could indicate an eating disorder or disordered eating. Unexplained high A1c, episodes of DKA, and hypoglycemia can be clinical indicators of ED-DMT1. Patients reporting traditional eating disorder symptoms regardless of diabetes status such as excessive exercise, discomfort with eating or taking insulin in front of friends and family, and hoarding food also may be at risk.1,8 Changes in weight may or may not be present, so RDs shouldn’t use this factor alone as evidence of an eating disorder.
Some common warning signs Weiner has seen in her practice include clients canceling appointments, claiming they can’t upload tracked blood glucose information onto data sharing software, and not running out of test strips, lancets, or other supplies for checking blood glucose.
• Ask questions. Setnick emphasizes the importance of asking patients questions—as many as possible, but “kindly and curiously” without giving off an air of suspicion by asking too many. She suggests: “What are you worried about?”; “How can I support you?”; “What is your understanding so far of the nutrition needs of your condition?”; and “How has your eating changed since your diagnosis?”
Asking questions provides “a golden opportunity for the dietitian to offer to clear up any misconceptions, address any fears, and then give the individual confidence that the dietitian is there and willing to answer questions that come up, even between appointments,” Setnick says.
However, Setnick says, asking too many questions can give patients the impression that you don’t trust them—they may shut down and feel accused or defensive. Be sure these questions are “open-ended and nonjudgmental,” Weiner adds. In other words, listen more than you speak, and let the patient have the floor.
• Listen carefully to the answers. Weiner says RDs sometimes are programmed as “fixers”—they know they have answers for clients and they want to help, especially in the face of a lifelong condition that requires daily, dedicated management. This isn’t necessarily a fault, she says, but it doesn’t always represent what people with diabetes need in a given moment, which is perhaps simply an ear for their feelings to be validated.
Setnick agrees: “Sometimes what someone needs isn’t information but affirmation. Don’t try to use information as a solution for feelings,” she says. For example, “if [a young patient] says, ‘I’m really afraid that if I inject my insulin incorrectly, I’ll die,’ the answer is not, ‘Well, I will help teach you how to do it correctly.’ Of course [the patient] needs to be taught how to do it correctly, but someone has to address the fear.”
Furthermore, Setnick says, RDs shouldn’t assign feelings to patients or assume how they feel, such as saying to a patient, “You’re so lucky that we have insulin.” The appropriate action is to ask questions about how the patient is feeling instead of assuming. Setnick suggests queries such as, “How are you coping with this?”; “Do you ever get down about this new diagnosis?”; and “When you get down, what do you do about it?” If the patient is struggling to cope, Setnick suggests adding a mental health professional to the diabetes care team to help them develop healthful coping strategies.
• Avoid stigmatizing language. This recommendation is obvious to most if not all RDs, but it may not be obvious what that language looks like when speaking with young people with type 1 diabetes. Weiner stresses using person-first language (ie, someone is a “person with diabetes,” not a “diabetic”), a trend that’s starting to catch on with many RDs and other health care professionals. She also recommends asking whether a person has “checked,” not “tested,” his or her blood glucose. “‘Test’ implies pass-fail,” she says.
Weiner views the terms “control,” “compliance,” and “adherence” as judgmental and points RDs to the 2017 consensus report “The Use of Language in Diabetes Care and Education” by the American Diabetes Association and AADE (available at https://care.diabetesjournals.org/content/diacare/early/2017/09/26/dci17-0041.full.pdf), which argues these terms connote laziness, carelessness, and a lack of motivation on the patient’s part.
This stigmatizing language can lead to poor psychological outcomes such as depression and anxiety and discourage self-care behaviors. Instead, state what the patient does or doesn’t do in objective terms, such as “He takes his medication about half the time.” The consensus report offers other language substitutions when speaking with patients, such as “manage” instead of “control,” and providing suggestions (eg, “Have you tried …”) vs imperatives (eg, “You shouldn’t …”).10
Another instance in which Setnick would be sure to use language carefully is in discussing meeting with a mental health professional. She believes patients with type 1 diabetes and their families often can benefit from mental health counseling to cope with the stresses of managing a chronic condition but avoids saying they “need to see a psychologist” or “need to go to counseling.”
“In my experience, teens (and sometimes parents) can misinterpret that as, ‘This person must think I’m really screwed up,’” she says. Her suggestions: “I’d like us to bring a counselor onto our team,” or “Let’s get some advice from someone who is a specialist in this type of situation.”
• Don’t use scare tactics. In the vein of language to avoid, both Setnick and Weiner vehemently disagree with using scare tactics such as telling patients the worst possible complications. Setnick says scare tactics are harmful for any patient—those with type 1 diabetes, eating disorders, and beyond—but they’re especially damaging to patients who already suffer from depression or anxiety.
“For example, if [a patient] is anxious, telling them, ‘If you do this wrong, you could die,’ will just make them more anxious. If [a patient] is depressed, telling them [the same thing] might make them say, ‘Well, it’s all over anyway, so I might as well give up.’ Everyone interprets information through their own lens, and you don’t know how the person is going to take that information,” she says.
• Know when to seek help and make referrals. While Setnick believes all RDs should have a toolbox equipped to help patients with dysfunctional eating behaviors, she says, “If you feel like you’re out of your league, call an eating disorder RD for a professional consultation. Your main question is essentially, ‘Can I provide what this patient needs with some coaching from an expert? Or is it in the best interest of the patient for me to refer them out of my care?’”
Setnick says that a strong working relationship with a patient and family sometimes can be equally or more important than eating disorder expertise, but if your discomfort or uncertainty hampers your ability to provide nutrition care, it’s better to refer the patient to an expert who can then consult with you or other members of the patient’s diabetes care team. (She doesn’t recommend a patient work concurrently with two different RDs.) If a patient’s eating issues have progressed beyond outpatient management, an evaluation for an eating disorder program may be more helpful than general medical or psychiatric hospitalization. Weiner recommends the eating disorder treatment center Melrose Center, with locations throughout Minnesota, which boasts a program specifically for ED-DMT1. As of early 2020, Alsana, which comprises five eating recovery centers in California, Missouri, and Alabama, offers a treatment plan for ED-DMT1 patients as well.
Setnick reminds RDs there’s no “once-and-done” screening for ED-DMT1. As they work with patients, RDs need to “be on the constant lookout for misunderstanding” about diabetes, food, insulin, and other aspects of disease management. At diagnosis, let families know not only what highs and lows feel like but that they may experience fear, defeat, and other “emotional complications.” Setnick tells new patients, “‘Some people might have a temptation to give up and say this is too hard, and if you start to feel that way, please let me know. Some people start to feel like they have to shut their whole life down in order to take care of this, and if you start to feel like that, please let me know.’
“I think if we can prepare someone for the potential extremes of what they might experience, we can help them feel not as shameful or shocked if and when it does happen,” she continues. “And even more importantly, they’ll know where to turn.”
— Hadley Turner is associate editor of Today’s Dietitian and RDLounge.com, the blog written for RDs by RDs.
1. Brown A, Weiner S. Dying to be skinny: eating disorders and type 1 diabetes. Paper presented at: American Association of Diabetes Educators Annual Conference; August 11, 2019; Houston, TX.
2. Types of eating disorders. American Diabetes Association website. https://www.diabetes.org/diabetes/mental-health/eating-disorders. Accessed November 18, 2019.
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