This week was National Eating Disorders Awareness Week and so I thought it would be a perfect time to share my “Diabulimia Primer.” This is a document that I’ve crafted using the research on eating disorders in people with type 1 diabetes. I take it to every doctors appointment (even endocrinologists) to explain what this eating disorder is all about.
I first developed it because no provider I knew understood the disorder. So when they saw my extremely high blood sugars, instead of taking the time to understand what was behind them, they would judge me, threaten me, and give me lectures about how I would lose my limbs and die. Many didn’t believe me that insulin can cause weight gain and others still mistook me for someone with type 2 and would tell me I needed to lose weight. That only made things worse.
In time I’ve found more and more providers have at least heard of the concept but they don’t have a great grasp on what it means or how and why it develops. The document cites research because I know doctors won’t accept my word for it. And once they’ve read this primer, they often come to a new understanding and are able to better help me with my treatment.
Before getting to the primer though, I wanted to say things about my own experience. I was diagnosed with type 1 diabetes at 19, in my second year of college. I went into the ER at the behest of a friend’s mom because my friend’s brother had type 1 and she recognized the symptoms. I had been ecstatic at the weight loss, having had disordered eating all my life. When they told me I had diabetes, I was so entrenched with the common narrative that diabetes is about obesity that when they were explaining the difference between type 1 and type 2, I literally said “well at least I don’t have the fat people kind.” An absurd statement not only because of my misunderstanding of type 2 but because by that point you could see my ribs showing through my skin and I was clearly not “fat” by any measure.
The problem was, no one screened me for an eating disorder. So when I started getting insulin in my body again, my weight shot up. I gained weight quickly and soon weight more than I had before I had diabetes (which is typical as you’ll see below). And all the sudden there was an even greater focus on food and counting carbs and the pressure to get perfect blood sugars and be a “good” diabetic. It was all overwhelming and intense and that was what finally pushed me over into a certain eating disorder. Within 2 months of my diagnosis, I was bulimic. A year later, diabulimia was in full force. And to this day I still struggle with it.
As of now, I’m doing much better. In fact, my HbA1c (a rough estimate of average blood sugars) is the lowest it’s been in 5 years. It’s a long road and one I wish more providers could help me with, but their lack of education and understanding have been huge barriers to their care. Thus, I bring this primer with me wherever I go. And a copy of this study: What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study so they can learn and we can work together without judgment.
Feel free to use this for yourself but it is not in any way a document giving medical advice. I have had it reviewed by professionals who work with type 1 diabetics and those with diabulimia and they have confirmed what I have pulled together, but again this is not medical advice.
Also note that much of the text is directly lifted from the articles cited so that it would not seem as if I twisted any of the findings, that this is not my interpretation but the actual facts.
Eating Disorders and Diabulimia in
Type 1 Diabetics
Diabulimia is an eating disorder in those with Type 1 Diabetes where individuals intentionally misuse insulin for weight control including: decreasing the prescribed dose of insulin, omitting insulin entirely, delaying the appropriate dose, or manipulating the insulin itself to render it inactive.
Contributing Factors to the Development of Diabulimia
- Weight gain associated with insulin treatment.3
- Diabetes management conveys an increased risk of weight gain (an average of 10.45 lbs more in intensive treatment cohort) and this weight is difficult to lose.14
- Comprehensive diabetes management may also inadvertently contribute to an increased risk of eating disorders in some individuals because intensive insulin therapy is associated with weight gain.7
- Reduction of weight at the beginning of the disease followed by rapid increase often with additional weight gain due to insulin therapy.6,10
- Some patients associate initial weight gain with insulin administration once treatment of diabetes is initiated following diagnosis. 22
- Adolescent girls and adult women with type 1 diabetes, on average, have significantly higher BMI values than their nondiabetic cohorts.5,8, 13
- Insulin is an anabolic/storage hormone encouraging fat storage.
- Emphasis on Food
- Necessary emphasis on food and dietary restraint (including carbohydrate counting and meal planning) that creates an unhealthy focus on food, numbers and control.3,5
- Obsession with food as diabetes treatment focuses on food, eating behaviours, regular exercise, frequent blood sugar monitoring, and signs of hypoglycemia.22
- Constant, conscious awareness of food portion size and caloric or carbohydrate content.14
- Emotional demands of chronic illness
- Increased risk of eating disorders in women with type 1 diabetes may be related to the complex and constant requirements of diabetes management and to the influence of living with a chronic medical condition.7
- Psychological and emotional effects of having to manage a chronic medical condition with anxiety and depression common with both type 1 and an eating disorder diagnosis.3
- Increased stress of managing diabetes as a result of powerlessness and negative social perceptions is associated with greater eating disorder concerns.20
- Emotional States
- Momentary increases in anxiety/nervousness and guilt/disgust with self before eating increased the odds of restricting insulin at the upcoming meal.17
- Depressed mood, low self-esteem, and excessive focus on the weight issue and appearance have been shown to predict disordered eating.2,6,18
- Individuals who reported greater-than-average negative affect were more likely to restrict insulin.17
- Need for control (with a disease that is not completely controllable)
- May manipulate insulin as a way to take back control of their diabetes and regain a feeling of command.22
- Fear of hypoglycemia (as treatment [for hypoglycemia] involves further eating).14
- Insulin restriction was more likely when individuals reported that they broke a dietary rule (e.g., “no desserts”).17
- Need for perfection
- Frustration and a sense of failure.14
- Unrealistic and perfectionistic expectations (from self, family, providers) about blood glucose patterns.14
- Other factors
- Developmental effects of a chronic medical condition on body image and self-concept.5
- Some patients have an eating disorder that is present prior to the diagnoses of diabetes.22
- Lower regularity of meals increases the chances of the emergence of abnormal eating patterns in people with diabetes.16
- Altered reward-processing system regulated by dopamine.26
- Structural and functional differences in the orbitofrontal cortex or other brain regions.26
- Comorbid mental health illnesses including depression and anxiety.20
- Comorbid physical health conditions. (see information on Celiac Sprue below)
- Factors other than patient behavior including adequacy of medical management, duration of diabetes, weight gain, poverty, and access to care.27
- Eating Disorders are almost two and a half times more likely among diabetic girls with type 1 diabetes.12
- 40% of 15-30 year old females with type 1 diabetes omit insulin for weight loss purposes.1
- Females with type 1 diabetes are more likely to exhibit 2 or more disturbed eating behaviours than their peers.14
- Risk of death for one with diabulimia is 17-fold compared to type 1 diabetes alone and 7-fold compared to anorexia nervosa alone.3
- Rate of onset and later progression of severity of both microvascular disease and peripheral nerve damage is greatly accelerated.3
- Being severely malnourished can cause changes to the brain and cognition – many of which can return to normal after a person begins eating again.26
- Lipodystrophy at injection site, diabetic ketoacidosis, and hospitalization are significantly more common in those with type 1 diabetes and eating disorders. Duration of hospital stays were also significantly longer. 24
- These behaviours persist and increase in severity over time. Once entrenched, the cycle of diabulimia (see above) can be difficult to treat.14
- According to the American Diabetes Association, all persons with diabetes should be evaluated at the initial visit and on a period basis going forward even if there is no patient-specific indication. In addition, evaluation is indicated during major disease and life transitions, including the onset of complications, significant changes in treatment, or life circumstances. And providers should consider asking whether there are new or different barriers to treatment and self-management, such as feeling overwhelmed or stressed by diabetes or other life stressors.27
- Screening for disordered eating behaviors including elevated HbA1c, dieting frequency, reduced quality of life, less diabetes self-confidence, worsened diabetes management, and body dissatisfaction should be part of clinical routine, and early assistance recommended to prevent deterioration.11
- Screening for disordered eating behaviors is recommended to be done at diagnosis and during quarterly endocrine visits for care of adolescents and young adults with diabetes, and it is important for primary care providers to be aware of disordered eating behavior and work collaboratively with endocrine team and may assist with arranging mental health counseling.10
- Early diagnosis is crucial in view of prognosis and the development of complications. Physicians dealing with diabetes should always consider poor compliance shown as poor glycemic control, weight fluctuations, recurrent episodes of hypoglycemia and diabetic ketoacidosis as the possibility of co-occurrence of diabetes and eating disorders. The interview should also focus on the incidence of typical symptoms of eating disorders such as dietary restrictions or eating excessive amounts of food, denial of weighing, counting calories, use of laxatives, induced vomiting, excessive physical activity, or excessive focus on their appearance and weight.21
- To be effective, a strong non-judgmental, trusting relationship between the individual and their health professionals is required.4
- The goal of provider-patient communication should be to empower the person with diabetes without blaming them for “noncompliance” when the outcomes of self-management are not optimal.27
- Note: Noncompliance denotes a passive, obedient role for persons with diabetes in “following doctor’s orders” that is at odds with the active role they are asked to take in directing the day-to-day planning, monitoring, evaluation, and problem-solving involved in diabetes self-management.27
- Acknowledge even small improvements in glycemic control.25
- Avoidance of emphasis on weight loss.25
- Allow patients to express their negative feelings about diabetes and their own goals for diabetes treatment without being judgmental.25
- Social relationships and a strong sense of community are important for recovery, in particular relationships where the individual does not feel judged on the basis of their disorder but feels understood, accepted and perceives their issues are taken seriously by their social networks.15
- High self-efficacy toward diabetes care-related tasks lowers risky behavior overall, which, in turn, predicted better metabolic and health outcomes, including depression, anxiety, and stress.20
- Recovery groups provide social support, meaning, purpose, and a behavioral guide and provides the individual with specific goals and motivations that offer a sense of purpose post-transition into recovery.15
Barriers to Treatment
- The comorbidity of eating disorders with type 1 diabetes represents a notoriously difficult combination to treat effectively, which may be further complicated by the presence of other psychiatric diagnoses.1
- This demographic does not respond well to standard treatment for eating disorders, and even when there appears to be an improvement in psychological well-being, this does not relate to an improvement in glucose management.1
- Other barriers to change include
- High levels of interpersonal distrust, lower self-esteem, and more body dissatisfaction before treatment.9
- Providers dismissal of healthcare professionals including lack of professional knowledge and training.15
- Family may have a negative impact on recovery in that dysfunctional family relationships could contribute to the development of the disorder but also that family members can reinforce disordered behaviors due to the value placed on weight loss.15
Diabetic Diet is a Myth
- The American Diabetes Association says
- A healthy meal plan for people with diabetes is generally the same as a healthy diet for ANYONE.28
- Current medical nutrition therapy guidelines promote flexible and healthy eating patterns personalized to the individual rather than defining a wide range of behaviors as dietary “nonadherence.”27
- Joslin Diabetes Center says
- people with diabetes can eat the same foods as the rest of their family.29
- “The ‘diabetes diet’ is not something that people with type 1 or type 2 should be following. That just simply isn’t how meal planning works today for patients with diabetes.”29
Celiac Disease and Eating Disorders:
- Eating disorders appear to be more frequent in young celiac women.19
- Two types of disordered eating in celiac disease: a binge eating type and a restrictive type.23
- Binge eating behaviours in celiac disease may be related to non-celiac disease specific factors such as the distress associated with dietary-controlled illness.23
Understanding the severity of eating disorders:
Using the Strunkard Scale to assess body image, the patient indicates what they perceive as their current shape and their ideal shape. Those with eating disorders tend to overestimate their current size and underestimate a healthy size.
Men’s average BMI for each figure-number
Women’s average BMI for each figure-number
- We Are Diabetes (support organization for type 1 diabetics with eating disorders) http://www.wearediabetes.org/diabulimia.php
- National Eating Disorder Association (NEDA) http://www.nationaleatingdisorders.org/diabulimia-5
- The Atlantic https://www.theatlantic.com/health/archive/2015/10/when-diabetes-leads-to-an-eating-disorder/412849/
- The New York Times Well Blog https://well.blogs.nytimes.com/2016/02/01/an-eating-disorder-in-people-with-diabetes/
- Psychology Today http://www.psychologytoday.com/articles/200807/the-danger-diabulimia
Joslin Diabetes Center http://www.joslin.org/info/Eating_Disorders_Diabulimia_in_Type_1_Diabetes.html
- Allan, J. A. (2015). Understanding poor outcomes in women with type 1 diabetes and eating disorders.Journal of Diabetes Nursing,19(3). Found at: http://www.thejournalofdiabetesnursing.co.uk/media/content/_master/4104/files/pdf/jdn19-3-99-103.pdf
- Bächle, C., Lange, K., Stahl-Pehe, A., Castillo, K., Scheuing, N., Holl, R. W., Giani, G., Rosenbauer, J. (2015). Symptoms of Eating Disorders and Depression in Emerging Adults with Early-Onset, Long-Duration Type 1 Diabetes and Their Association with Metabolic Control.Plos One,10(6). doi:10.1371/journal.pone.0131027. Found at: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0131027
- Bermudez, O. (2012). JDRF: T1D Intel: Learning about the dual diagnosis of an eating disorder and type 1 diabetes. Retrieved February 13, 2017, from http://www.jdrf.org/blog/2012/10/15/t1d-intel-learning-about-the-dual-diagnosis-of-an-eating-disorder-and-type-1-diabetes/.
- Callum, A. M., & Lewis, L. M. (2014). Diabulimia among adolescents and young adults with Type 1 diabetes.Clinical Nursing Studies,2(4). doi:10.5430/cns.v2n4p12. Found at: http://www.sciedupress.com/journal/index.php/cns/article/view/4260
- Colton, P., Olmsted, M., Daneman, D., Rydall, A., & Rodin, G. (2004). Disturbed Eating Behavior and Eating Disorders in Preteen and Early Teenage Girls With Type 1 Diabetes: A case-controlled study.Diabetes Care,27(7), 1654-1659. doi:10.2337/diacare.27.7.1654. Found at http://care.diabetesjournals.org/content/27/7/1654.
- Colton, P. A., Olmsted, M. P., Daneman, D., Rydall, A. C., & Rodin, G. M. (2007). Natural history and predictors of disturbed eating behaviour in girls with Type 1 diabetes.Diabetic Medicine,24(4), 424-429. doi:10.1111/j.1464-5491.2007.02099.x.
- Colton, P., Rodin, G., Bergenstal, R., & Parkin, C. (2009). Eating Disorders and Diabetes: Introduction and Overview.Diabetes Spectrum,22(3), 138-142. doi:10.2337/diaspect.22.3.138.
- DCCT Research Group. (2001). Influence of Intensive Diabetes Treatment on Body Weight and Composition of Adults With Type 1 Diabetes in the Diabetes Control and Complications Trial. Diabetes Care,24(10), 1711-1721. doi:10.2337/diacare.24.10.1711. Found at: http://care.diabetesjournals.org/content/24/10/1711.long. And DCCT Research Group. (1998) Weight Gain Associated With Intensive Therapy in the Diabetes Control and Complications Trial. (1988). Diabetes Care,11(7), 567-573. doi:10.2337/diacare.11.7.567.
- Dingemans, A. E., Son, G. E., Aardoom, J. J., Bruidegom, K., Landt, M. C., & Furth, E. F. (2016). Predictors of psychological outcome in patients with eating disorders: A routine outcome monitoring study. International Journal of Eating Disorders,49(9), 863-873. doi:10.1002/eat.22560. Found at: http://onlinelibrary.wiley.com/doi/10.1002/eat.22560/abstract.
- Doyle, E. A. (2016). Screening for Disordered Eating Behaviors in Adolescents and Young Adults With Type 1 Diabetes. Pediatric Nursing, 42(4), 197-200. Retrieved February 13, 2017, from http://www.medscape.com/viewarticle/871445.
- Eilander, M. M., Wit, M. D., Rotteveel, J., Aanstoot, H. J., Waarde, W. M., Houdijk, E. C., Nuboer, R., Winterdijk, P., Snoek, F. J. (2016). Disturbed eating behaviors in adolescents with type 1 diabetes. How to screen for yellow flags in clinical practice?Pediatric Diabetes. doi:10.1111/pedi.12400.
- Frankenfield, G. (2000, June 21). Eating Disorders More Likely in Diabetic Girls. Retrieved February 13, 2017, from http://www.webmd.com/diabetes/news/20000621/eating-disorders-diabetic-girls#1.
- Frohlich-Reiterer, E. E., Rosenbauer, J., Pozza, S. B., Hofer, S. E., Schober, E., & Holl, R. W. (2014). Predictors of increasing BMI during the course of diabetes in children and adolescents with type 1 diabetes: data from the German/Austrian DPV multicentre survey.Archives of Disease in Childhood,99(8), 738-743. doi:10.1136/archdischild-2013-304237
- Goebel-Fabbri, A. E. (2009). Disturbed eating behaviors and eating disorders in type 1 diabetes: Clinical significance and treatment recommendations. Current Diabetes Reports,9(2), 133-139. doi:10.1007/s11892-009-0023-8. Found at: http://care.diabetesjournals.org/content/27/7/1654.long.
- Hastings, A., Mcnamara, N., Allan, J., & Marriott, M. (2016). The importance of social identities in the management of and recovery from ‘Diabulimia’: A qualitative exploration. Addictive Behaviors Reports,4, 78-86. doi:10.1016/j.abrep.2016.10.003. Found at: http://www.sciencedirect.com/science/article/pii/S235285321630044X.
- Mellin, A. E., Neumark-Sztainer, D., Patterson, J., & Sockalosky, J. (2004). Unhealthy weight management behavior among adolescent girls with type 1 diabetes mellitus: The role of familial eating patterns and weight-related concerns.Journal of Adolescent Health,35(4), 278-289. doi:10.1016/j.jadohealth.2003.10.006.
- Merwin, R. M., Dmitrieva, N. O., Honeycutt, L. K., Moskovich, A. A., Lane, J. D., Zucker, N. L., Surwit, R. S., Feinglos, M., Kuo, J. (2015). Momentary Predictors of Insulin Restriction Among Adults With Type 1 Diabetes and Eating Disorder Symptomatology. Diabetes Care,38(11), 2025-2032. doi:10.2337/dc15-0753. Found at: http://care.diabetesjournals.org/content/38/11/2025.long.
- Olmsted, M. P., Colton, P. A., Daneman, D., Rydall, A. C., & Rodin, G. M. (2008). Prediction of the Onset of Disturbed Eating Behavior in Adolescent Girls With Type 1 Diabetes. Diabetes Care,31(10), 1978-1982. doi:10.2337/dc08-0333. Found at: http://care.diabetesjournals.org/content/31/10/1978.
- Passananti, V., Siniscalchi, M., Zingone, F., Bucci, C., Tortora, R., Iovino, P., & Ciacci, C. (2013). Prevalence of Eating Disorders in Adults with Celiac Disease. Gastroenterology Research and Practice,2013, 1-7. doi:10.1155/2013/491657. Found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3867876/.
- Powers, M. A., Richter, S. A., Ackard, D. M., & Craft, C. (2017). Diabetes Distress Among Persons With Type 1 Diabetes: Associations With Disordered Eating, Depression, and Other Psychological Health Concerns. The Diabetes Educator,43(1), 105-113. doi:10.1177/0145721716680888. Found at: http://journals.sagepub.com/doi/full/10.1177/0145721716680888.
- Racicka, E., & Bryńska, A. (2015). Eating Disorders in children and adolescents with type 1 and type 2 diabetes – prevalence, risk factors, warning signs. Psychiatria Polska,49(5), 1017-1024. doi:10.12740/PP/39536. Found at: http://www.psychiatriapolska.pl/uploads/images/PP_5_2015/ENGver1017Racicka_PsychiatrPol2015v49i5.pdf.
- Roney, A. M. (2015). An Exploration of Eating Disorders (Diabulimia) Associated with Type 1 Diabetes (Thesis, Master of Science, Nursing, UNIVERSITY OF NEVADA, RENO). (UMI No. 1591403). Found at: http://gradworks.umi.com/15/91/1591403.html.
- Satherley, R., Howard, R., & Higgs, S. (2016). The prevalence and predictors of disordered eating in women with coeliac disease.Appetite,107, 260-267. doi:10.1016/j.appet.2016.07.038.
- Scheuing, N., Bartus, B., Berger, G., Haberland, H., Icks, A., Knauth, B., Nellen-Hellmuth, N., Rosenbaeur, J., Teufel, M., Holl, R. W. (2014). Clinical Characteristics and Outcome of 467 Patients With a Clinically Recognized Eating Disorder Identified Among 52,215 Patients With Type 1 Diabetes: A Multicenter German/Austrian Study. Diabetes Care,37(6), 1581-1589. doi:10.2337/dc13-2156. Found at: http://care.diabetesjournals.org/content/37/6/1581.long
- Weinger, K., Welch, G. W., & Jacobson, A. M. (2004). Psychological and Psychiatric Issues in Diabetes Mellitus. In L. Poretsky (Ed.), Psychological and Psychiatric Issues in Diabetes Mellitus(pp. 639-653). Springer US. doi:10.1007/978-1-4757-6260-0_34. Found at: http://link.springer.com/chapter/10.1007%2F978-1-4757-6260-0_34.
- Weir, K. (2016). New insights on eating disorders: Scientists are uncovering the faulty neurobiology behind anorexia and bulimia, debunking the myth that such eating disorders are solely driven by culture and environment.American Psychological Association,47(4). Found at: http://www.apa.org/monitor/2016/04/eating-disorders.aspx.
- Young-Hyman, D., De Groot, M., Hill-Briggs, F., Gonzalez, J. S., Hood, K., & Peyrot, M. (2016). Psychosocial Care for People With Diabetes: A Position Statement of the American Diabetes Association. Diabetes Care,39, 2126-2140. doi:10.2337/dc16-2053. Found at: http://care.diabetesjournals.org/content/39/12/2126.
- American Diabetes Association: Diabetes Myths. (2015). Found at: http://www.diabetes.org/diabetes-basics/myths/.
- Joslin Diabetes Center: The Truth About the So-Called “Diabetes Diet”. (n.d.). Retrieved February 13, 2017, from https://www.joslin.org/info/the_truth_about_the_so-called_diabetes_diet.html.
For Strunkard Scale see also: Zellner, D.A., Harner, D.E., and Adler, R.L. 1989. Effects of eating abnormalities and gender on perceptions of desirable body shape. Journal of Abnormal Psychology, 98, 93-96.)