Prevention and Recovery from Eating Disorders in Type 1 Diabetes

Injecting Hope

Ann Goebel-Fabbri

• Publisher: Routledge
• Year: 2017
• Print ISBN:
  9781138890619
• eBook ISBN:
  9781317488026
• Topic: Medicine
• Subtopic: Abnormal Psychology

Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope sheds light on an often overlooked and misunderstood issue: the problem of eating disorders in women with type 1 diabetes – referred to by lay people and the media as "diabulimia" and characterized by insulin restriction as a means of calorie purging for weight loss. Drawing on a series of recent interviews and over 16 years of research and clinical experience with this unique phenomenon, author Dr. Ann Goebel-Fabbri provides groundbreaking insight into the lives of women who have recovered from eating disorders in type 1 diabetes. She explores the condition's origins, its effects on the lives of those affected, and possible paths to recovery. Also included are suggestions for prevention and treatment, as well as practical and inspirational advice from now-recovered women. Prevention and Recovery from Eating Disorders in Type 1 Diabetes is a valuable guide for patients and loved ones, diabetes treatment teams, and eating disorder clinicians.

1
What We Know So Far about Eating Disorders in Type 1 Diabetes

Type 1 Diabetes and Eating Disorders 101

In order to better understand the complex issue of eating disorders in the context of type 1 diabetes (T1DM), it is important to first understand the medical realities of T1DM. (Those readers who are already “fluent in the language of diabetes,” please skip ahead.) T1DM is an autoimmune disease characterized by the body’s immune system selectively attacking the cells of the pancreas that produce insulin. Insulin is the hormone that allows our bodies to access energy from food by moving glucose out of the blood stream and into the cells for use or storage. Without insulin, blood sugar levels rise and the body attempts to regulate these levels by excreting glucose in the urine. Because of the lack of insulin, the body cannot use the energy from the glucose in the blood. This leaves the body in a starvation state, so it turns instead to burning muscle and fat for fuel – resulting in rapid and unhealthy weight loss. Prior to diagnosis, the classic symptoms of untreated T1DM include profound thirst, frequent urination, and rapid weight loss as mentioned above.

The current treatment standard for T1DM involves multiple daily doses of insulin either by injection or an insulin pump. Patients must regularly monitor blood sugar levels and calculate food amounts so that they can estimate how much insulin they need at a particular time. Synthetic insulin comes in many forms – some provide long-lasting, 24-hour coverage (referred to as basal insulin), and others are rapid-acting and intended to address blood sugar elevations quickly (called bolus insulin). Using these different insulins in particular combinations allows for a treatment that aims to regulate blood sugar levels as closely to a healthy pancreas as possible. The complications of T1DM, such as eye disease, kidney disease, and nerve damage, may be prevented or delayed with current treatment recommendations. However, when the person with T1DM is exposed to elevated blood glucose for long periods of time, these complications may occur earlier in life and with shorter diabetes duration than one might expect with current treatment. Additionally, an acute and life-threatening medical crisis, diabetic keto-acidosis (DKA), is a common risk associated with severely elevated blood sugar. When the body breaks down muscle and fat for energy, as noted above, ketone bodies result. At high levels, ketones change the body’s pH balance so that it becomes acidic. The resulting DKA is typically treated in intensive care with IV fluid, insulin, and close monitoring to determine any other necessary interventions.

Intentional insulin restriction is a calorie purge specific to T1DM and involves strategically increasing blood sugar levels sometimes to a similar degree as in the case of undiagnosed and untreated T1DM. As explained previously, the body attempts to regulate these levels by excreting sugar into the urine and thereby losing calories. Dehydration and rapid weight loss can result from prolonged high blood sugar as the body loses fluid and breaks down its own tissue. Disordered eating behavior, usually milder in severity and not yet meeting diagnostic criteria, is common among adolescent girls and young women in the general population, however those with T1DM are more likely to exhibit two or more disordered eating behaviors than their peers without diabetes (1). These may include dieting for weight loss, binge eating, and calorie purging through self-induced vomiting, laxative or diuretic use, excessive exercise, or insulin restriction (2). As many as 31% of women with T1DM report intentional insulin restriction, with these rates peaking in late adolescence and early adulthood (40% of women between ages of 15 and 30 years) (3). Eating disorder behaviors often persist, become more common, and increase in severity over the young adult years (1). Indeed, the average onset is around 23 years of age (4). Research suggests that women with T1DM have close to 2.5 times the risk for developing an eating disorder than women without diabetes (5).

Potential Risk Factors

It remains unclear why girls and women with T1DM have increased rates of eating disorders, but T1DM is strongly associated with a number of general eating disorder risk factors. For example, people with diabetes have twice the risk of clinically significant depression than those without diabetes (6). Women and girls with T1DM are also slightly heavier than their peers without diabetes (7), and older type 1 diabetes treatments were associated with an increased risk of weight gain themselves. The Diabetes Control and Complications Trial (DCCT) (8), the largest and longest study evaluating the impact of glycemia on the emergence and/ or progression of diabetes complications, established that maintaining near-normal blood glucose ranges, referred to as intensive diabetes management, improves long-term health outcomes in T1DM. However, along with decreased risk of complications, the group of patients with intensive diabetes management were an average of 10.45 pounds heavier than the group receiving the standard treatment of that time (9; 10). After the DCCT results were published, women with T1DM expressed concern about intensive diabetes management causing weight gain (11). However, it is important to note that the tools available to treat T1DM have significantly changed since the DCCT was conducted and published over 20 years ago. The DCCT version of intensive diabetes management came at the expense of frequent hypoglycemia, which requires treatment with glucose and therefore extra calories. This was a likely contributor to the weight gain seen in the intensively treated group. Frequent hypoglycemia and the risk of related weight gain can be prevented and mitigated with the more tailored and finely tuned insulin protocols used today. Currently used types of insulin and medical devices, like the insulin pump, may not carry the same risk of weight gain as older treatment approaches, because they offer the opportunity for treatments to more closely approximate the action of a healthy pancreas.

Other aspects of diabetes treatment may also increase the risk of eating disorders. The necessary attention to food portions and weight can parallel the rigid thinking about food, weight, and body image reported by women with eating disorders who do not have diabetes (12). Studies find that disturbed eating behaviors are strongly predicted by higher BMI, higher weight and shape concerns, lower self-esteem, and depressed mood. Positive feelings about appearance, the absence of depression, and lower BMI may be protective factors (2; 13–15). Lower self-esteem and higher diabetes-related family conflict also appear to be risk factors (16).

The Course of Eating Disorders in T1DM

The A1c is a laboratory test that provides an estimate of a person’s average blood glucose over a three month period. Intensive diabetes management encourages a goal A1c of 7% (4–6% is the non-diabetes range). Women with T1DM and eating disorders have A1c values approximately 2 or more percentage points higher than similarly aged women without eating disorders. They also have higher rates of hospital and emergency room visits, higher rates of diabetes-related nerve and eye disease, and more negative attitudes toward T1DM than women who do not report insulin restriction (3; 17; 18). Even lower threshold disordered eating behaviors are strongly associated with significant medical and psychological consequences in the context of diabetes (19). In fact, endorsing insulin restriction alone was shown to increase mortality risk threefold over an 11-year follow-up period (20).

As stated above, insulin restriction becomes more prevalent in later adolescence and into adulthood. This may be related to decreasing parental supervision of T1DM management as adolescents gain more independence. It becomes more common and potentially worse in severity and frequency throughout early adulthood. Once the pattern of frequent and habitual insulin restriction takes hold, the cycle of poor body image, depression, anxiety, and shame; chronically elevated blood sugar and poor T1DM management can be complex and difficult to treat. When compared to eating disorders without T1DM, women with eating disorders and T1DM have a higher likelihood that their eating disorder will relapse after recovery (4).

This model of eating disorders in T1DM is based on the ideas above (21). It was modified and updated for this book. The model’s top portion represents factors that could contribute to the risk of developing an eating disorder in T1DM. These include specific aspects of diabetes treatment like the need to focus on food portions, types of food eaten, and carbohydrate counting. Intensive diabetes management emphasizes aiming for blood sugar levels as close to the non-diabetes range as possible. This can sometimes seem unattainable to patients, and may leave them feeling burned out and disengaged. Such treatment recommendations can lead to feelings of food deprivation, resentment, and the correlated problems of binge eating and shame. Diabetes treatment goals can also encourage perfectionism and lead to frustration when blood glucose cannot be kept in the target range at all times. Possible weight gain associated with improved glucose ranges and lower A1c is another diabetes-specific eating disorder risk factor. The elements in the bottom half of the model represent factors that perpetuate and potentially fuel the eating disorder. These include depression and anxiety, which can be related to elevated blood glucose levels, but which also occur at higher rates in T1DM regardless of glucose ranges. Negative feelings about body shape and weight as well as the fear of weight gain may be connected to diabetes management itself or may be unrelated to the specifics of T1DM and involve things like peer and family culture as well as society at large. Finally, hyperglycemia and elevated A1c values often result from the use of insulin restriction for calorie purging. Once these emerge, it is common for patients to not only disengage from appropriate insulin administration but also from routine blood glucose checking. This leaves them unaware of what their glucose levels are doing throughout the day and may give them a greater ability to ignore the insulin doses that they need. Because of the way all factors in the model interrelate, they can each be viewed as possible targets for intervention and treatment. Patients should be asked what elements they feel ready and motivated to address as they start treatment. Since each factor is connected, changes in one element may have a cascading impact on the others. Theoretically, if one thing in the model improves, others will too, and the patient may feel more confident and motivated to sustain positive changes and begin to attempt new ones. For example, if the patient works at developing more-realistic and less-perfectionistic goals for her blood glucose, she may not dread seeing her blood sugar levels as much. This may lead her to start to check blood sugars more regularly again. Some patients will then notice that they are more likely to take insulin when they see what their glucose levels actually are. Once they are taking some insulin in response to their glucose levels, they may feel less ashamed about their diabetes management and feel they can reach out for help from their healthcare team more readily. This may allow them to reveal that they have been struggling with depression and need medication, or to discuss their eating disorder/insulin restriction and seek help in finding appropriate treatment. According to the model, each change may lead to an improvement in all other factors in the model, and each successive change and improvement hinges on the one before it as well.

FIGURE 1.1 Model of Eating Disorders in T1DM with Insulin Restriction.

Recommendations for Treatment

Diabetes health professionals report feeling frustrated by their lack of training in the treatment of eating disorders in T1DM as well as by the fact that specialized treatment for eating disorders in T1DM is rarely available (22). (Please refer to the Appendix for available resources.) T1DM patients are more likely to drop out of treatment and also show worse outcomes with conventional outpatient treatment for eating disorders (23). Longer stays in residential treatment are reportedly associated with better outcomes than shorter stays, perhaps highlighting greater complexity and need in this population of patients (24). Taken together, this information underscores the importance of understanding how to design the most effective treatments for eating disorders in T1DM. Current treatment guidelines are helpful but have limitations since they are based upon clinical expertise but lack research support (25–27).

A team approach to treatment, involving many specialty providers, is considered the standard of care for both eating disorders and diabetes (28; 29). When it comes to this dual diagnosis, the team should include more members, such as an endocrinologist, a diabetes nurse educator, a nutritionist with eating disorder and/or diabetes training, and a psychologist or social worker to provide weekly individual therapy. Ideally, the therapist should have expertise in both eating disorders and diabetes, but professionals with both of these skill sets are hard to find. At a minimum, he or she should be an eating disorder specialist who is interested and willing to learn about the role T1DM plays in this unique eating disorder. A psychiatrist may also be needed to prescribe medications in the case of comorbid depression or anxiety disorders. All members of the team should be in close communication, share the same treatment goals, and be open to learn from each other. Prior to outpatient treatment, some patients may need a medical or psychiatric hospitalization until they are medically/psychiatrically stable and able to engage in outpatient care.

The outpatient treatment team must be willing to work collaboratively with the patient to establish small goals that she feels ready to work on and that appear to be realistic and achievable. For example, a critical initial treatment goal involves the patient’s agreement to maintain medical safety by preventing the onset of DKA. This requires committing to routine daily injections of basal insulin (providing 24-hour background coverage). If the patient cannot do this consistently, then she is not ready to be treated at the outpatient level and requires a more intensive level of treatment. Such a collaborative patient approach can build trust in the treatment relationships.

Helping patients to identify and anticipate possible challenges from the very start of treatment is quite important. This can help solidify trust in the treatment team and also may help to reduce the risk of patients dropping out of treatment. The first challenge many patients face is the significant amount of water retention associated with appropriate insulin levels and improved blood sugar. This is sometimes referred to as “insulin edema.” It is more likely to be a problem if patients have been regularly restricting insulin and are dehydrated at the start of treatment. Patients should be educated about edema and warned that they may feel fat, bloated, and uncomfortable with this fluid-related weight gain. For example, clothes, shoes, and rings may not fit. The fluid most often settles in the lower limbs and feet, but it can also be seen in the abdomen, arms, and even the face. Experiencing edema just at the start of treatment can be especially frightening and can trigger relapse. Patients benefit from frequent reassurance from all team members that this fluid retention is not reflective of weight gain due to increased fat, and that it is temporary. Unfortunately, how long it takes to pass varies between individuals and cannot be predicted. Patients should be encouraged to drink plenty of liquid and to avoid caffeine if possible. Some physicians may choose to prescribe a one-month supply of a low-dose diuretic in order to help the patient tolerate this stage of treatment. By keeping this prescription time-limited and without refills, the risk of abuse may be minimized. Once fluid levels have stabilized, patients’ ongoing fears about weight gain unrelated to edema must also be taken seriously.

Some patients aim for elevated blood glucose, because they fear hypoglycemia and not exclusively because they are using it as a calorie purge. Symptoms of hypoglycemia include anxiety, jitteriness, sweating, dizziness, and cognitive changes. Hypoglycemic episodes feel similar to a panic attack and can therefore be frightening. Pure glucose is the standard treatment for hypoglycemia – the typically recommended treatment is 15 grams of glucose at the start. Hypoglycemic reactions sometimes trigger episodes of binge eating or “over-treating” with too much glucose. Patients describe knowing that they are over-treating, but that their strong wish to resolve their symptoms overrides this knowledge. It can help to anticipate with patients that over-treating hypoglycemia may trigger a feeling that their eating is out of control and fear that it will lead to weight gain. Patients can be encouraged to treat hyp...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• List of Figures and Text Boxes
• Foreword
• Foreword
• Preface
• Acknowledgments
• 1 What We Know So Far about Eating Disorders in Type 1 Diabetes
• 2 Learning from the Experts
• 3 Ideas about Risk and Prevention
• 4 What Did and Didn't Help
• 5 Motivators and Challenges to Recovery
• 6 The Treatment and Recovery Process
• 7 The Gifts of Recovery
• 8 Lingering Symptoms and Diabetes Complications
• 9 Advice for Those Still Struggling
• 10 Practical Applications of Expert Teaching
• 11 Realistic Hope
• Appendix: Helpful Resources
• References
• Index