Diabulimia (a
portmanteau
A portmanteau word, or portmanteau (, ) is a blend of words[diabetes
Diabetes, also known as diabetes mellitus, is a group of metabolic disorders characterized by a high blood sugar level ( hyperglycemia) over a prolonged period of time. Symptoms often include frequent urination, increased thirst and increased ap ...](_blank)
'' and ''
bulimia
Bulimia nervosa, also known as simply bulimia, is an eating disorder characterized by binge eating followed by purging or fasting, and excessive concern with body shape and weight. The aim of this activity is to expel the body of calories eate ...
''), also known as ED-DMT1 (eating disorder-diabetes mellitus type 1) in the
US or T1ED (type 1 eating disorder) in the
UK, is an
eating disorder
An eating disorder is a mental disorder defined by abnormal eating behaviors that negatively affect a person's physical or mental health. Only one eating disorder can be diagnosed at a given time. Types of eating disorders include binge eating d ...
in which people with
type 1 diabetes
Type 1 diabetes (T1D), formerly known as juvenile diabetes, is an autoimmune disease that originates when cells that make insulin (beta cells) are destroyed by the immune system. Insulin is a hormone required for the cells to use blood sugar for ...
deliberately give themselves less
insulin
Insulin (, from Latin ''insula'', 'island') is a peptide hormone produced by beta cells of the pancreatic islets encoded in humans by the ''INS'' gene. It is considered to be the main anabolic hormone of the body. It regulates the metabolism o ...
than they need or stop taking it altogether for the purpose of
weight loss
Weight loss, in the context of medicine, health, or physical fitness, refers to a reduction of the total body mass, by a mean loss of fluid, body fat (adipose tissue), or lean mass (namely bone mineral deposits, muscle, tendon, and other conn ...
. Diabulimia is not recognized as a formal psychiatric diagnosis in the
DSM-5
The ''Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition'' (DSM-5), is the 2013 update to the ''Diagnostic and Statistical Manual of Mental Disorders'', the taxonomic and diagnostic tool published by the American Psychiatric ...
. Because of this, some in the medical or psychiatric communities use the phrases "disturbed eating behavior" or "disordered eating behavior" (DEB in both cases) and
disordered eating
Disordered eating describes a variety of abnormal eating behaviors that, by themselves, do not warrant diagnosis of an eating disorder.
Disordered eating includes behaviors that are common features of eating disorders, such as:
* Chronic restra ...
(DE) are quite common in medical and psychiatric literature addressing patients who have type 1 diabetes and manipulate insulin doses to control weight along with exhibiting bulimic behavior.
Diabulimia is caused by a range of factors relating to
body image
Body image is a person's thoughts, feelings and perception of the aesthetics or sexual attractiveness of their own body. The concept of body image is used in a number of disciplines, including neuroscience, psychology, medicine, psychiatry, ps ...
, the regular use of
insulin
Insulin (, from Latin ''insula'', 'island') is a peptide hormone produced by beta cells of the pancreatic islets encoded in humans by the ''INS'' gene. It is considered to be the main anabolic hormone of the body. It regulates the metabolism o ...
, and
emotional well-being
Emotions are mental states brought on by neurophysiological changes, variously associated with thoughts, feelings, behavioral responses, and a degree of pleasure or displeasure. There is currently no scientific consensus on a definition. ...
. Insulin can cause weight gain, and a person who restricts insulin may lose weight. Insulin restriction can lead to the common symptoms of uncontrolled
hyperglycaemia
Hyperglycemia is a condition in which an excessive amount of glucose circulates in the blood plasma. This is generally a blood sugar level higher than 11.1 mmol/L (200 mg/dL), but symptoms may not start to become noticeable until even ...
, which risks complications and a shorter life expectancy. Treatment involves cognitive behavioural therapy, and other support services offered by a multidisciplinary team who work both in diabetes medicine and on eating disorders.
Diabulimia is most common in young people, and most of the severe cases tend to occur in women. Research into effective management strategies is ongoing, with a growing medical consensus on the importance of early intervention with specialist teams. People with diabulimia often suffer both from clinicians and from friends and family, partly due to the lack of understanding of the condition.
Signs and symptoms
A person with diabulimia, especially if not treated early, can result in negative effects on the body earlier than one who is managing properly. Of diabetics who have a DEB, some intentionally misuse insulin to control weight.
This may also involve irregular eating patterns.
Suspension of insulin combined with overeating can result in
ketoacidosis
Ketoacidosis is a metabolic state caused by uncontrolled production of ketone bodies that cause a metabolic acidosis. While ketosis refers to any elevation of blood ketones, ketoacidosis is a specific pathologic condition that results in changes ...
.
Multiple hospitalizations for ketoacidosis or
hyperglycemia
Hyperglycemia is a condition in which an excessive amount of glucose circulates in the blood plasma. This is generally a blood sugar level higher than 11.1 mmol/L (200 mg/dL), but symptoms may not start to become noticeable until even ...
are cues to screen for an underlying emotional conflict.
Short term
The short-term symptoms of diabulimia are:
* Frequent and
excessive urination
Frequent urination is the need to urination, urinate more often than usual. Diuretics are medications that will increase urinary frequency. Nocturia is the need of frequent urination at night. The most common cause of urinary frequency for women ...
* Frequent and
excessive thirst
* Frequent and
excessive hunger
*
High blood glucose levels (often over 600 mg/dL or 33 mmol/L)
*
Weakness
Weakness is a symptom of a number of different conditions. The causes are many and can be divided into conditions that have true or perceived muscle weakness. True muscle weakness is a primary symptom of a variety of skeletal muscle diseases, i ...
*
Fatigue
Fatigue describes a state of tiredness that does not resolve with rest or sleep. In general usage, fatigue is synonymous with extreme tiredness or exhaustion that normally follows prolonged physical or mental activity. When it does not resolve ...
* Large amounts of
glucose in the urine (glycosuria)
* Inability to
concentrate
A concentrate is a form of Chemical substance, substance that has had the majority of its base component (in the case of a liquid: the solvent) removed. Typically, this will be the removal of water from a Solution (chemistry), solution or suspens ...
*
Electrolyte disturbance
Electrolyte imbalance, or water-electrolyte imbalance, is an abnormality in the concentration of electrolytes in the body. Electrolytes play a vital role in maintaining homeostasis in the body. They help to regulate heart and neurological function, ...
* Severe
ketonuria
Ketonuria is a medical condition in which ketone bodies are present in the urine.
It is seen in conditions in which the body produces excess ketones as an indication that it is using an alternative source of energy. It is seen during starvation o ...
, and, in DKA, severe
ketonemia
*
Low sodium levels
Medium term
These are the medium-term symptoms of diabulimia. They are prevalent when diabulimia has not been treated and hence also include the short-term symptoms.
*
Muscle atrophy
Muscle atrophy is the loss of skeletal muscle mass. It can be caused by immobility, aging, malnutrition, medications, or a wide range of injuries or diseases that impact the musculoskeletal or nervous system. Muscle atrophy leads to muscle weakness ...
*
GERD Gerd or GERD may refer to:
* Gerd (given name), a list of people with the given name or nickname
* Gerd (moon), a moon of Saturn
* Gerd Island, South Orkney Islands, Antarctica
* Gastroesophageal reflux disease, a chronic symptom of mucosal damage ...
*
Indigestion
Indigestion, also known as dyspepsia or upset stomach, is a condition of impaired digestion. Symptoms may include upper abdominal fullness, heartburn, nausea, belching, or upper abdominal pain. People may also experience feeling full earlier t ...
* Severe
weight loss
Weight loss, in the context of medicine, health, or physical fitness, refers to a reduction of the total body mass, by a mean loss of fluid, body fat (adipose tissue), or lean mass (namely bone mineral deposits, muscle, tendon, and other conn ...
*
Proteinuria
Proteinuria is the presence of excess proteins in the urine. In healthy persons, urine contains very little protein; an excess is suggestive of illness. Excess protein in the urine often causes the urine to become foamy (although this symptom ma ...
* Moderate to severe
dehydration
In physiology, dehydration is a lack of total body water, with an accompanying disruption of metabolic processes. It occurs when free water loss exceeds free water intake, usually due to exercise, disease, or high environmental temperature. Mil ...
*
Edema
Edema, also spelled oedema, and also known as fluid retention, dropsy, hydropsy and swelling, is the build-up of fluid in the body's Tissue (biology), tissue. Most commonly, the legs or arms are affected. Symptoms may include skin which feels t ...
with fluid replacement
*
High cholesterol
Hypercholesterolemia, also called high cholesterol, is the presence of high levels of cholesterol in the blood. It is a form of hyperlipidemia (high levels of lipids in the blood), hyperlipoproteinemia (high levels of lipoproteins in the blood), ...
Long term
If a person with type 1 diabetes who has diabulimia has the disease for more than a short time—usually due to alternating phases during which insulin is injected properly and relapses during which they have diabulimia—then the following longer-term symptoms can be expected:
*
Delayed puberty
Delayed puberty is when a person lacks or has incomplete development of specific sexual characteristics past the usual age of onset of puberty. The person may have no physical or hormonal signs that puberty has begun. In the United States, girls ar ...
(and
dysmenorrhoea
Dysmenorrhea, also known as period pain, painful periods or menstrual cramps, is pain during menstruation. Its usual onset occurs around the time that menstruation begins. Symptoms typically last less than three days. The pain is usually in the ...
or
amenorrhoea
Amenorrhea is the absence of a menstrual period in a woman of reproductive age. Physiological states of amenorrhoea are seen, most commonly, during pregnancy and lactation (breastfeeding). Outside the reproductive years, there is absence of menses ...
in women) in young people
*Severe
kidney damage
Kidney disease, or renal disease, technically referred to as nephropathy, is damage to or disease of a kidney. Nephritis is an inflammatory kidney disease and has several types according to the location of the inflammation. Inflammation can b ...
: high blood sugar can overwork the
kidney
The kidneys are two reddish-brown bean-shaped organs found in vertebrates. They are located on the left and right in the retroperitoneal space, and in adult humans are about in length. They receive blood from the paired renal arteries; blood ...
s, eventually leading to
kidney failure
Kidney failure, also known as end-stage kidney disease, is a medical condition in which the kidneys can no longer adequately filter waste products from the blood, functioning at less than 15% of normal levels. Kidney failure is classified as eit ...
and the need for a
kidney transplant
Kidney transplant or renal transplant is the organ transplant of a kidney into a patient with end-stage kidney disease (ESRD). Kidney transplant is typically classified as deceased-donor (formerly known as cadaveric) or living-donor transplantati ...
* Severe
neuropathy
Peripheral neuropathy, often shortened to neuropathy, is a general term describing disease affecting the peripheral nerves, meaning nerves beyond the brain and spinal cord. Damage to peripheral nerves may impair sensation, movement, gland, or o ...
(nerve damage to hands and feet)
* Extreme
fatigue
Fatigue describes a state of tiredness that does not resolve with rest or sleep. In general usage, fatigue is synonymous with extreme tiredness or exhaustion that normally follows prolonged physical or mental activity. When it does not resolve ...
*
Edema
Edema, also spelled oedema, and also known as fluid retention, dropsy, hydropsy and swelling, is the build-up of fluid in the body's Tissue (biology), tissue. Most commonly, the legs or arms are affected. Symptoms may include skin which feels t ...
(during blood sugars controlled phases)
*
Heart problems
Cardiovascular disease (CVD) is a class of diseases that involve the heart or blood vessels. CVD includes coronary artery diseases (CAD) such as angina and myocardial infarction (commonly known as a heart attack). Other CVDs include stroke, ...
*
Retinal damage and subsequent vision problems
*
High cholesterol
Hypercholesterolemia, also called high cholesterol, is the presence of high levels of cholesterol in the blood. It is a form of hyperlipidemia (high levels of lipids in the blood), hyperlipoproteinemia (high levels of lipoproteins in the blood), ...
(hypercholesterolaemia)
*
Osteoporosis
Osteoporosis is a systemic skeletal disorder characterized by low bone mass, micro-architectural deterioration of bone tissue leading to bone fragility, and consequent increase in fracture risk. It is the most common reason for a broken bone ...
*
Death
Death is the irreversible cessation of all biological functions that sustain an organism. For organisms with a brain, death can also be defined as the irreversible cessation of functioning of the whole brain, including brainstem, and brain ...
Causes
Diabulimia is caused by a range of factors relating to
body image
Body image is a person's thoughts, feelings and perception of the aesthetics or sexual attractiveness of their own body. The concept of body image is used in a number of disciplines, including neuroscience, psychology, medicine, psychiatry, ps ...
, the regular use of
insulin
Insulin (, from Latin ''insula'', 'island') is a peptide hormone produced by beta cells of the pancreatic islets encoded in humans by the ''INS'' gene. It is considered to be the main anabolic hormone of the body. It regulates the metabolism o ...
, and
emotional well-being
Emotions are mental states brought on by neurophysiological changes, variously associated with thoughts, feelings, behavioral responses, and a degree of pleasure or displeasure. There is currently no scientific consensus on a definition. ...
.
The long-term management of type 1 diabetes often involves dietary restrictions for control of
blood sugar level
Glycaemia, also known as blood sugar level, blood sugar concentration, or blood glucose level is the measure of glucose concentrated in the blood of humans or other animals. Approximately 4 grams of glucose, a simple sugar, is present in the blo ...
, which can raise a negative attention to diet.
There is often a focus on the fact that insulin can cause weight gain, and that not using insulin can cause weight loss.
This increases the risk of eating disorders such as
anorexia nervosa
Anorexia nervosa, often referred to simply as anorexia, is an eating disorder characterized by low weight, food restriction, body image disturbance, fear of gaining weight, and an overpowering desire to be thin. ''Anorexia'' is a term of Gr ...
and
bulimia nervosa
Bulimia nervosa, also known as simply bulimia, is an eating disorder characterized by binge eating followed by purging or fasting, and excessive concern with body shape and weight. The aim of this activity is to expel the body of calories eate ...
. The vast majority of people with diabulimia are aware of the negative side effects that
hyperglycaemia
Hyperglycemia is a condition in which an excessive amount of glucose circulates in the blood plasma. This is generally a blood sugar level higher than 11.1 mmol/L (200 mg/dL), but symptoms may not start to become noticeable until even ...
can cause.
Skipping insulin can lead to weight loss without side effects at first, but the risk of side effects gets progressively worse - by this time, it is more difficult to change behaviour.
Often, people with type 1 diabetes who omit insulin injections will have already been diagnosed with an eating disorder such as
anorexia nervosa
Anorexia nervosa, often referred to simply as anorexia, is an eating disorder characterized by low weight, food restriction, body image disturbance, fear of gaining weight, and an overpowering desire to be thin. ''Anorexia'' is a term of Gr ...
,
bulimia nervosa
Bulimia nervosa, also known as simply bulimia, is an eating disorder characterized by binge eating followed by purging or fasting, and excessive concern with body shape and weight. The aim of this activity is to expel the body of calories eate ...
, or
EDNOS
Other specified feeding or eating disorder (OSFED) is a subclinical DSM-5 category that, along with unspecified feeding or eating disorder (UFED), replaces the category formerly called eating disorder not otherwise specified (EDNOS) in the DSM-I ...
. These individuals often think diabulimia is less common than it is and do not know how difficult it is to overcome. Unlike anorexia and bulimia, diabulimia sometimes requires the affected individual to stop caring for a medical condition. Unlike vomiting or starving, there is sometimes no clear action or willpower involved.
Prognosis
Diabulimia appears to lower
life expectancy
Life expectancy is a statistical measure of the average time an organism is expected to live, based on the year of its birth, current age, and other demographic factors like sex. The most commonly used measure is life expectancy at birth ...
compared to other patients with type 1 diabetes, with the
mean
There are several kinds of mean in mathematics, especially in statistics. Each mean serves to summarize a given group of data, often to better understand the overall value (magnitude and sign) of a given data set.
For a data set, the ''arithme ...
age of death around 45 (13 years lower than that for type 1 diabetes without an eating disorder).
This reduced life expectancy is
correlated
In statistics, correlation or dependence is any statistical relationship, whether causal or not, between two random variables or bivariate data. Although in the broadest sense, "correlation" may indicate any type of association, in statistics ...
with the severity of eating disorder behaviours.
Treatment
There are no specific guidelines for the treatment of diabetes and disordered eating. The standard approach for treatment of two complex conditions involves a multidisciplinary team of professionals.
This team may include an
endocrinologist
Endocrinology (from ''endocrine'' + '' -ology'') is a branch of biology and medicine dealing with the endocrine system, its diseases, and its specific secretions known as hormones. It is also concerned with the integration of developmental events ...
, a
psychiatrist
A psychiatrist is a physician who specializes in psychiatry, the branch of medicine devoted to the diagnosis, prevention, study, and treatment of mental disorders. Psychiatrists are physicians and evaluate patients to determine whether their sy ...
, a
psychologist
A psychologist is a professional who practices psychology and studies mental states, perceptual, cognitive, emotional, and social processes and behavior. Their work often involves the experimentation, observation, and interpretation of how indi ...
, and a
dietician
A dietitian, medical dietitian, or dietician is an expert in identifying and treating disease-related malnutrition and in conducting medical nutrition therapy, for example designing an enteral tube feeding regimen or mitigating the effects of ca ...
.
Therapies may involve
cognitive behavioural therapy
Cognitive behavioral therapy (CBT) is a psycho-social intervention that aims to reduce symptoms of various mental health conditions, primarily depression and anxiety disorders. CBT focuses on challenging and changing cognitive distortions (su ...
.
Family involvement and
family therapy
Family therapy (also referred to as family counseling, family systems therapy, marriage and family therapy, couple and family therapy) is a branch of psychology and clinical social work that works with families and couples in intimate relationsh ...
is helpful for long-term maintenance of good behaviours with taking insulin.
A positive mindset to recovery, and connection with others who have experienced diabulimia, increases the probability of successful recovery.
Even with treatment, relapse is common (some estimate over 50% relapse within 6 years), requiring long-term reassessment for early intervention.
Epidemiology
Diabulimia is most common in women, and in people between 15 and 30 years old.
Around 40% of men with type 1 diabetes may have skipped insulin injection at least once, and around 20% of women.
Some studies have found that up to 60% of people with type 1 diabetes deliberately restrict insulin at some point.
Many articles and studies further conclude that diabetic females have, on average, higher
body mass index
Body mass index (BMI) is a value derived from the mass (weight) and height of a person. The BMI is defined as the body mass divided by the square of the body height, and is expressed in units of kg/m2, resulting from mass in kilograms and he ...
(BMI) than their nondiabetic counterparts. Girls and young adult women with higher BMIs are also shown to be more likely to have disordered eating behavior (DEB).
Many authoritative articles show that preteen and teenage girls with type 1 diabetes have significantly higher rates of eating disorders of all types than do girls without diabetes.
History
Diabulimia is not currently recognised in the
DSM-5
The ''Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition'' (DSM-5), is the 2013 update to the ''Diagnostic and Statistical Manual of Mental Disorders'', the taxonomic and diagnostic tool published by the American Psychiatric ...
.
Current diagnoses are based on the idea of insulin restriction being a feature of existing
anorexia nervosa
Anorexia nervosa, often referred to simply as anorexia, is an eating disorder characterized by low weight, food restriction, body image disturbance, fear of gaining weight, and an overpowering desire to be thin. ''Anorexia'' is a term of Gr ...
and
bulimia nervosa
Bulimia nervosa, also known as simply bulimia, is an eating disorder characterized by binge eating followed by purging or fasting, and excessive concern with body shape and weight. The aim of this activity is to expel the body of calories eate ...
.
Diabulimia is gaining notability within
scientific research
The scientific method is an empirical method for acquiring knowledge that has characterized the development of science since at least the 17th century (with notable practitioners in previous centuries; see the article history of scientific m ...
.
In 2019,
NHS England
NHS England, officially the NHS Commissioning Board, is an executive non-departmental public body of the Department of Health and Social Care. It oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the ...
began trialling specialist diabulimia
clinic
A clinic (or outpatient clinic or ambulatory care clinic) is a health facility that is primarily focused on the care of outpatients. Clinics can be privately operated or publicly managed and funded. They typically cover the primary care needs ...
s.
Whilst access to eating disorder clinics is improving, access to specialist diabulimia services is not widely available.
Society and culture
A lack of recognition of diabulimia by
clinician
A clinician is a health care professional typically employed at a skilled nursing facility or clinic. Clinicians work directly with patients rather than in a laboratory or as a researcher. A clinician may diagnose, treat, and otherwise care for pa ...
s leads to generally negative medical interactions.
There is also a lack of
public awareness.
A lack of medical understanding creates
social stigma
Social stigma is the disapproval of, or discrimination against, an individual or group based on perceived characteristics that serve to distinguish them from other members of a society. Social stigmas are commonly related to culture, gender, rac ...
.
Because diabulimia tends not to involve significant eating restriction like
anorexia nervosa
Anorexia nervosa, often referred to simply as anorexia, is an eating disorder characterized by low weight, food restriction, body image disturbance, fear of gaining weight, and an overpowering desire to be thin. ''Anorexia'' is a term of Gr ...
, or purging as in
bulimia nervosa
Bulimia nervosa, also known as simply bulimia, is an eating disorder characterized by binge eating followed by purging or fasting, and excessive concern with body shape and weight. The aim of this activity is to expel the body of calories eate ...
, some do not recognise the significance of diabulimia.
A
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...
in 2017 caused a significant increase in requests for specialist medical training for diabulimia, and improved public awareness.