Eating Disorders and Diabetes

Contributed by Diabulimiahelpline.org

Diabulimia Helpline is the world’s first 501(c)3 non-profit organization dedicated to education, support, and advocacy for people with diabetes and eating disorders. Their mission is to bring awareness about the co-morbidity of diabetes and eating disorders; provide resources to those afflicted and educate healthcare professionals about the presence and dangers of mental health issues in the diabetes community.

Eating disorders in people with diabetes are known by several unofficial names. Diabulimia refers to anyone with insulin dependent diabetes who omits or restricts their insulin. ED-DM refers to anyone with comorbid diabetes and eating disorder, regardless of type. ED-DMT1 and ED-DMT2 refer to any eating disorder in a person with type 1 or type 2 diabetes respectively. T1DE is used primarily in the UK to refer to someone with type 1 diabetes who has disordered eating or an eating disorder.1 Unfortunately, the diagnostic manual, DSM-5 TR, does not provide a diabetes specific diagnosis, although it does recognize insulin restriction as a purging behavior.2 A person’s official diagnosis will depend on their behaviors. Below are some ways that insulin omission/restriction can occur in individuals with different types of eating disorders or disordered eating:3

  • Anorexia Nervosa – restriction of food leading to significantly low body weight, often to avoid taking insulin or to avoid carbohydrates.
  • Bulimia Nervosa – binge eating episodes with insulin restriction, over-exercising, or other inappropriate compensatory actions.
  • Binge Eating Disorder – intentionally overdosing insulin to justify a binge; can also be the cause of type 2 diabetes.
  • Other Specified Feeding and Eating Disorder – often people with comorbid diabetes and eating disorders are diagnosed under OSFED because providers don’t know where else to put it.
  • Purging Disorder (a subtype of OSFED or binge-eating/purging type of anorexia nervosa) – normal eating patterns with insulin restriction, over-exercising, or other inappropriate compensatory actions.
  • Orthorexia (not a formal eating disorder diagnosis but type of disordered eating)– obsession with achieving the “perfect diet” for diabetes.

Risk Factors


With the intense focus on food, labels, and numbers (weight, blood glucose, A1c), frequent discussion of control, and the many disruptions that occur in a person’s metabolic system, we know that having diabetes is a high-risk factor for developing an eating disorder.4 Highest risk periods occur during adolescence and when leaving home the first time, but it is imperative to remember that a person may develop an eating disorder at any age and at any point after their diabetes diagnosis.5 Sometimes it begins with body image issues or a desire to lose weight; sometimes it begins as diabetes burnout (i.e., feeling exhausted or overwhelmed by managing and thinking about diabetes 24/7, 365 days a year; often accompanied by not taking one’s medication, not testing blood glucose, etc); and sometimes a person already struggled with disordered eating or an eating disorder prior to their diabetes diagnosis.6

Biological Risk Factors: 3,4,7

  • Loss of hunger and satiety cues
  • Loss of appetite suppression
  • Stomach empties too quickly thus reducing production of neuropeptides
  • Lack of dopamine causes depression
  • Lipodystrophy or diabelly can negatively affect body image
  • Low blood glucose can induce a binge
  • High blood glucose numbs emotions and reduces anxiety

Psychological Risk Factors:3,4,7,8

  • Diabetes distress and Diabetes burnout
  • Depression and Anxiety
  • Obsessive compulsive disorder (OCD) and post traumatic stress disorder (PTSD)
  • Insulin related weight gain at diagnosis or with medication change
  • Higher weight, especially from insulin resistance
  • Diet mentality
  • Diabetes exacerbation of eating disorder characteristics:
    • Perfectionism, obsessionality, rigidity, control, predictability
    • Drive for thinness
    • Body dissatisfaction
  • Negative feelings toward insulin and/or having diabetes

Social / Environmental Risk Factors: 3,5,7

  • Diabetes education and language
  • Diabetes police or people who try to control, supervise or micromanage someone’s diabetes management, usually telling them what to do or not to do.
  • Shame within the diabetes community, e.g., shame cast upon people with diabetes who aren’t managing it properly, often because of mental health disorders, by those with diabetes who promote easy and/or perfect management.
  • Transitioning from pediatric to adult care
  • First time being 100% responsible for diabetes management
  • Provider’s negative and/or dismissive attitudes towards patients with diabetes and co-occurring eating disorders/disordered eating (i.e. labeling a client as non-compliant and missing signs of an eating disorder)
  • Fear based lectures on possible future complications
  • “Teaching a person how to be a ‘perfect diabetic’ is akin to teaching them how to have an eating disorder” Dr. Ann Goebel-Fabbri6

Warning Signs and Symptoms


Emotional and Behavioral1,3,5,9,10,11

  • Increasing neglect or secrecy around diabetes management
  • Avoiding diabetes related appointments
  • Fear of low blood sugars and/or high blood sugars
  • Fear that insulin causes weight gain
  • Anger about or avoidance of medication
  • Anger or apathy about having diabetes
  • Extreme increase or decrease in diet
  • Extreme anxiety about body image
  • Restricting certain food or food groups to lower insulin dosages
  • Avoids eating with family or in public
  • Discomfort testing/injecting in front of others
  • Overly strict food rules
  • Obsession with food, weight and/or calories
  • Excessive and/or rigid exercise pattern
  • Increase in sleep pattern
  • Withdrawal from friends and/or family activities
  • Depression and/or anxiety
  • Infrequently filled prescriptions

Physical1,3,5,9,10,11

  • A1c of 9.0 or higher on a continuous basis
  • A1c lower than 6.0 on a continuous basis
  • A1c inconsistent with meter readings
  • Frequent roller coaster blood glucose
  • Unexplained weight loss or weight gain
  • Constant bouts of nausea and/or vomiting
  • Persistent thirst and frequent urination
  • Multiple DKA or near DKA episodes
  • Low sodium and/or potassium
  • Frequent bladder, yeast or skin infections
  • Deteriorating or blurry vision
  • Fatigue or lethargy
  • Dry hair and skin
  • Irregular or lack of menstruation (for those assigned female at birth)
  • Early diagnosis of complications

Health Consequences


The human body is surprisingly resilient, and people often manage to function with much higher blood sugars than should be possible. Nevertheless, neither a low A1c nor blood sugars with high time in range necessarily denote someone who is free from an eating disorder.6,12 For example, it is not uncommon for someone with anorexia and diabetes to have an excellent A1c, only to decide “if you are going to make me eat, then I am not going to take my insulin.”6

Complications from eating disorders in diabetes can happen swiftly, and can be severe and irreversible. Patients with weight related insulin restriction were 3.2 times more likely to die over an 11-year study period, and to die an average of 13 years younger than those who didn’t restrict insulin.13 It is incredibly important to understand the many ways that eating disorders affect a person with diabetes. Early detection and proper treatment are critical.5,6

Short-term health consequences:1,14

  • Slow wound healing – high blood sugar causes poor circulation, decreases the function of red and white blood cells, and damages small blood vessels; all of which delay wound healing and can sometimes progress into an ulcer in a person with diabetes. Starvation or malnutrition can also slow wound healing since extra energy and protein are needed to produce new healthy tissue.
  • Staph and other bacterial infections – high blood sugar causes the body to produce certain enzymes and hormones that negatively affect the immune system and reduce the body’s defense against infection. This risk of infection plus slowed healing heighten a person’s chance of developing gangrene, sepsis or a bone infection.
  • Yeast infections – excess sugar allows the overgrowth of yeast, often in the vaginal or groin area.
  • Muscle atrophy – without insulin, the body cannot utilize food and cells begin to starve so the body breaks down muscle for fuel; this is true whether your body doesn’t produce insulin or is resistant to insulin.
  • Severe dehydration – in an attempt to expel ketones and/or excess glucose in the urine the body ends up dispelling too much fluid; in addition, extremely low-carb diets can cause dehydration because the body stores water with carbohydrates.
  • Electrolyte imbalance – as the kidneys extract sugar and ketones to expel with urine, they also extract sodium and potassium which can lead to an extreme electrolyte balance, especially when combined with vomiting from purging or which often occurs with high ketone levels.
  • Starvation Ketoacidosis – occurs when the body has not received any glucose for a prolonged period of time; although nutritional ketosis with very low levels of ketones can be ok for a time, it can be dangerous for a person with diabetes and an eating disorder.
  • Diabetic Ketoacidosis – ketones build up in the bloodstream faster than the kidneys can remove them causing the blood to become acidic. Not only does the acidic blood damage blood vessels, nerves and organs, but even a minor alteration in a person’s blood pH can cause organ systems to shut down resulting in coma and sometimes death. DKA mostly happens in people with autoimmune or pancreatic diabetes, but can happen with any type.

Long-term health consequences:1,13,14,15

High blood glucose causes blood to become like sandpaper scraping and damaging blood vessel walls. In addition, blood that is acidic from ketones can cause vessel damage. The consequences of this damage are often seen in the eyes where tiny vessels begin to leak into the eyeball.

  • Retinopathy – small black spots or “floaters” disrupting a person’s vision; the bleeding may be stopped with treatment, but persistent or recurrent retinopathy can eventually lead to blindness.
  • Macular Edema – swelling of the eyeball from excess fluid; if untreated it can eventually cause permanent damage to the eye.

Nerve fibers are particularly vulnerable. Many factors can damage the small nerves in the body including reduction in oxygen supply; thick, sticky blood that has difficulty getting to the small capillaries that feed the nerves; and inflammation of the nerves.

  • Peripheral Neuropathy – stabbing/burning/tingling pain, weakness or numbness in the hands, feet, legs and/or arms.
  • Autonomic Neuropathy – damage to the nerves that regulate internal organs; it can affect any body system and is often seen as:
    • Gastroparesis – slowed stomach emptying preventing proper digestion and causing stomach pain, nausea and vomiting.
    • Vasovagal Syncope – malfunction of the vasovagal nerve in response to stress or position change causing a sudden drop in blood pressure and heart rate and sometimes fainting.
    • Chronic diarrhea or constipation – when nerves that control the intestines and colon are damaged, a person may experience abnormal fluid absorption or slowed motility.
    • Incontinence or Urinary Hesitancy – when nerves that control the bladder are damaged, a person may lose control of their urethral sphincters or be unable to feel a full bladder.

Other types of organ damage:

  • Kidney disease – damage to the kidneys filtering system caused by the kidneys working excessively hard to remove ketones and/or glucose or from dehydration. Kidneys begin leaking protein into urine and lose their ability to remove waste products and excess fluid allowing waste and fluid to build up in the body; it can eventually lead to kidney failure requiring frequent dialysis or kidney transplant.
  • Liver disease – Although the specific mechanism is not well understood, we know that insulin deficiency or excess glucose results in non-alcoholic fatty liver disease – too much fat accumulated in the liver coupled with inflammation; in severe cases it can progress to cirrhosis and liver failure.
  • Heart disease – hypertension, hardening and narrowing of the arteries from high cholesterol, and tachycardia.

Many of the above consequences can become fatal – sometimes over time such as kidney or heart disease and sometimes very quickly such as diabetic ketoacidosis:

  • Coma
  • Stroke
  • Death

When the body cannot utilize anything eaten, it is put into a state of malnutrition or starvation. As a result, a person with diabetes and an eating disorder can incur the consequences of their eating disorder diagnosis in addition to the above diabetes-related complications.

Treatment


Regardless of how it begins, treatment can be challenging as individuals with diabetes tend to show higher dropout rates, poorer treatment outcomes, and earlier, more frequent relapses than other patients.9,16 Treatment regimens must address both the diabetes and eating disorder aspects of the disorder, especially in therapy and support groups.6

  • No matter where someone is in their eating disorder or recovery, a multidisciplinary team is necessary to address the many entangled issues present in a person with diabetes. The best scenario for a patient is to see an endocrinologist who understands eating disorders, a dietician and/or a certified diabetes care and education specialist (CDCES) who has knowledge of both diabetes and eating disorders, a mental health professional who specializes in eating disorders and is knowledgeable about comorbid diabetes, and a psychiatrist, if necessary, for medication management or severe comorbid mental health diseases.14,17
  • Both healthcare professionals and patients need to remember that “good enough” diabetes management is the goal, not “perfect” control. The quest for perfection can lead to an increase in diabetes burnout and enhance all-or-nothing thinking which in turn can boost the eating disorder.18
  • Levels of Care – may depend on the severity and duration of the eating disorder:
    • Inpatient or Residential – when a person needs medical or psychiatric stabilization, nutritional rehabilitation or more intensive help with insulin reintroduction; recommended when A1c is >12 or multiple DKA visits in the last 12 months.
    • Partial Hospitalization – step down from residential, or when a person needs oversight with eating, blood glucose testing, taking medication including insulin, or inserting technology (insulin pumps and CGMs).
    • Intensive Outpatient – step down from PHP, or when a person is responsible for, but wants some additional support with, eating, blood glucose testing, taking medication including insulin, or inserting technology (insulin pumps and CGMs).
    • Outpatient – bi-weekly, weekly or semi-monthly visits with a therapist; contingent upon the person taking their medication/insulin consistently, being able to eat enough food to maintain weight, and not engaging in degrees of purging that cause dangerous electrolyte imbalance.
  • Whenever possible, it’s important to choose a treatment center or program that offers a special track for people with diabetes. Patients and healthcare providers can ask to review diabetes management, insulin reintroduction protocols, therapeutic approach and staff training in diabetes to determine a center’s true level of expertise.9,16,19 You may also reach out to Diabulimia Helpline which has a nationwide referral database for treatment programs and providers that have experience in both diabetes and eating disorders.
  • Remember that an eating disorder is a serious mental health disorder. It cannot be treated by simply reinforcing diabetes education or stressing the dangers of diabetes complications.20

Recovery


Diabetes can be isolating. Eating disorders can be isolating. When you put the two together, it can feel like you or your loved one is the only person in the world contending with this problem. Please know that there is a community out there – online Facebook groups, in-person support groups, local programs. It may take a few tries, but you will find the right one. There are also appropriate resources specifically for people recovering from eating disorders in diabetes – books, websites, podcasts, Instagram accounts, etc.1

Finally, what does eating disorder recovery look like with diabetes?6

  • Consistently taking appropriate medication, especially insulin dosing.
  • Consistently testing your blood glucose.
  • Not engaging in rigid dieting, over-exercise, or intentionally keeping blood glucose high.
  • Eating in a flexible, intuitive and healthy way most of the time.
  • Not acting on eating disorder thoughts and feelings even if still experiencing them.

Sources


[1] Diabulimia Helpline. (n.d.). Frequently Asked Questions. Available at: http://www.diabulimiahelpline.org/faq.html. Accessed on May 15, 2023.

[2] American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders: DSM-5-TR. American Psychiatric Association Publishing. https://doi.org/10.1176/appi.books.9780890425787

[3] Gaudiani, J.L., Lee-Akers, D., & Akers, E.M. (2017, March). Eating disorders in type 1 diabetes (ED-DMT1): A case-based, evidence-based comprehensive review of diagnosis, treatment, and the role of the multidisciplinary team. International Association of Eating Disorder Professionals Symposium. Las Vegas, NV, USA.

[4] Lee-Akers D., & Simon, J. (2017, August). Biological and psychological risk factors for eating disorders in type 1 diabetes [poster presentation]. Annual Conference of the American Association of Diabetes Educators. Indianapolis, IN, USA.

[5] Colton, P.A., Rodin, G., Bergenstal, R., & Parkin, C. (2009). Eating disorders and diabetes: Introduction and overview. Diabetes Spectrum. 22(3):138-142. https://doi.org/10.2337/diaspect.22.3.138

[6] Goebel-Fabbri, A. (2017). Prevention and recovery from eating disorders in type 1 diabetes: Injecting Hope. Routledge.

[7] Hackett, R.A. & Steptoe, A. (2017). Type 2 diabetes mellitus and psychological stress – a modifiable risk factor. Nature Reviews Endocrinology, 13(2), 547-560. https://doi.org/10.1038/nrendo.2017.6

[8] Herpertz, S., Albus, C., Lichtblau, K., Köhle, K., Mann, K., & Senf, W. (2000). Relationship of weight and eating disorders in type 2 diabetic patients: a multicenter study. The International Journal of Eating Disorders, 28(1), 68–77. https://doi.org/10.2337/dc14-2646

[10] Doyle, E. A., Quinn, S. M., Ambrosino, J. M., Weyman, K., Tamborlane, W. V., & Jastreboff, A. M. (2017). Disordered Eating Behaviors in Emerging Adults With Type 1 Diabetes: A Common Problem for Both Men and Women. Journal of Pediatric Health Care, 31(3), 327–333. https://doi.org/10.1016/j.pedhc.2016.10.004

[11] Nicolau, J., Simó, R., Sanchís, P., Ayala, L., Fortuny, R., Zubillaga, I., & Masmiquel, L. (2015). Eating disorders are frequent among type 2 diabetic patients and are associated with worse metabolic and psychological outcomes: results from a cross-sectional study in primary and secondary care settings. Acta Diabetologica, 52(6), 1037–1044. https://doi.org/10.1007/s00592-015-0742-z

[12] Crow S, Kendall D, Praus B, & Thuras P. (2001). Binge eating and other psychopathology in patients with type II diabetes mellitus. Int J Eat Disord 30:222–226. https://doi.org/10.1002/eat.1077

[13] Rydall, A. C., Rodin, G. M., Olmsted, M. P., Devenyi, R. G., & Daneman, D. (1997). Disordered eating behavior and microvascular complications in young women with insulin-dependent diabetes mellitus. The New England Journal of Medicine, 336(26), 1849–1854. https://doi.org/10.1056/NEJM199706263362601

[14] Cleveland Clinic. (2022, March 31). Diabulimia. Available at: https://my.clevelandclinic.org/health/diseases/22658-diabulimia

[15] Garcia-Mayor, R.V., & Garcia-Soidan, F.J. (2017). Eating disorders in type 2 diabetic people: Brief review. Diabetes & Metabolic Syndrome: Clinical Research & Reviews, 11(3), 221-224. https://doi.org/10.1016/j.dsx.2016.08.004

[16] Custal, N., Arcelus, J., Agüera, Z., Bove, F. I., Wales, J., Granero, R., Jiménez-Murcia, S., Sánchez, I., Riesco, N., Alonso, P., Crespo, J. M., Virgili, N., Menchón, J. M., & Fernandez-Aranda, F. (2014). Treatment outcome of patients with comorbid type 1 diabetes and eating disorders. BMC Psychiatry, 14, 140. https://doi.org/10.1186/1471-244X-14-140

[17] Critchley, S., Meier, M., & Taylor, D. (2014). Eating disorders and type 1 diabetes: Practical approaches to treatment. Practical Diabetology. Mar/Apr:14-24

[18] Merwin, R.W. (2021). Eating Disorders and the Patient with Diabetes. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). https://www.niddk.nih.gov/health-information/professionals/diabetes-discoveries-practice/eating-disorders-and-the-patient-with-diabetes

[19] Winston, A.P. (2020). Eating disorders and diabetes. Current Diabetes Reports, 20(8), 32. https://doi.org/10.1007/s11892-020-01320-0

[20] Debono, M. & Cachia, E. (2007). The impact of diabetes on psychological well being and quality of life. The role of patient education. Psychology, Health & Medicine, 12(5), 545-555. https://doi.org/10.1080/13548500701235740