AED Tweetchat on Diabulimia

I have to admit that, when a colleague on the Academy for Eating Disorder Social Media Committee that I was co-chairing proposed “diabulimia” as an idea for a tweetchat, I was not particularly excited.  As an eating disorder specialist in outpatient private practice, I have not professionally encountered clients with diabetes and eating disorders.

Since we could not easily identify any experts on the topic who also tweeted, the idea languished until the International Association of Eating Disorder Professionals scheduled an event on the topic in my area.  John Dolores , JD, PhD, a licensed clinical psychologist and Executive Director of Center for Hope of the Sierras, was the guest speaker.

Prior to attending his talk, I had the luck at the FEAST conference to sit next to Dawn Lee-Akers, CFO at Diabulimia Helpline.  Together Dawn and Dr. Dolores educated me on the severity of ED-DTM1 (popularly referred to as “diabulimia”) and the need to draw more professional and public knowledge about this issue (and both agreed to be involved in the chat).

As a result, I was really excited to be involved in helping prepare for the AED twitter chat on the topic this week and to do my part to bring attention to the issue.  It was a great and informative chat and I hope you’ll read the entire transcript available here.

Some highlights of what I have learned:

  • Diabulimia is a media term; many providers prefer ED-DMT1.  It is most commonly the coexistence of Type I diabetes and an eating disorder with manipulation of insulin to lose weight.  In this case, the insulin manipulation is considered an inappropriate compensatory behavior (hence the use of the term diabulimia).  The individual may meet criteria for Bulimia Nervosa or OSFED.  It is also possible to have Type II diabetes and an eating disorder, which may be included in diabulimia if insulin manipulation is involved.  Additionally, some people can have diabetes and an eating disorder that are totally unrelated.
  • Women with Type I diabetes are 2.4 times more likely to develop an eating disorder than their non-diabetic peers.  Statistics vary quite significantly with a reported 45-80% of Type I diabetics reporting binge eating.  Multiple studies show 30%-35% of women with Type I diabetes report restricting or omitting insulin in order to lose weight.
  • Higher rates of eating disorders among people with diabetes are not surprising due to the way diabetes has traditionally been treated.  The traditional diabetes ‘diet’ focuses on low carbs and high protein, which encourages restriction, which in turn can lead to binge eating.  Diabetes management includes a lot of focus on numbers and on control which may feed perfectionism.  Patients with diabetes often lose weight pre-diagnosis, and gain weight when they start insulin, so come to associate insulin with weight increase.  They quickly learn that they can manipulate their weight by under dosing with insulin.
  • The effects of compensation by insulin are even more devastating than other forms of dietary compensation.  Patients with diabulimia are at risk for serious medical consequences.  The most dangerous short-term consequence is diabetic ketoacidosis, which requires immediate hospitalization.  Longer-term consequences include peripheral and autonomic neuropathy, retinopathy, cardiovascular disease, and even renal failure.  Some of the consequences are irreversible.
  • Diabulimia requires a specific and sensitive treatment approach from a coordinated team of professionals with expertise in diabetes and eating disorders.  The team should include nursing, endocrinologist, dietitian, therapist, and diabetes educator.  It is critical that the team use a consolidated approach and not treat the diabetes and eating disorder separately.
  • Intuitive eating, CBT, DBT, & ACT are successful in the treatment for comorbid diabetes and eating disorders.  The treatment of diabulima requires medical oversight, including regular monitoring of blood glucose, management of certain side effects of insulin re-introduction, and treatment of new or worsening diabetes complications.  Eating disorder patients with comorbid diabetes are more likely to be medically unstable and need inpatient treatment.

With diabetes on the rise and numerous prevention efforts aimed at preventing obesity, I was left wondering:  where are the prevention efforts for the even deadlier combination of diabetes and eating disorders?  For such efforts, eating disorder professionals and organizations must work together with diabetes professionals and organizations.  We invited several diabetes organizations to join our chat, and fortunately, a few did.  We must continue to raise attention to this problem and reach out to others outside the eating disorder field.

Resources:

  • The Diabetes Eating Problem Survey (DEPS-R) can be used by providers to assess whether patients with diabetes may have an eating disorder.
  • Diabulimia Helpline maintains a list of US treatment centers that have specialized programs to treat comorbid Diabetes and Eating Disorders.
  • Diabulimia Helpline recommends this video as the best overview on Diabulimia for patients, family and professionals.

Recognizing and Managing the Subtler Signs of Starvation in Children with EDs

This interaction on twitter caught my eye:

Signs of Anorexia

Watching cooking shows, collecting and reading recipes, and cooking for others (but not eating it oneself) are some of the earliest signs of anorexia that are often missed and misinterpreted by parents. 

In Keys’ landmark study “The Biology of Human Starvation” male volunteers were put on starvation diets.  According to Keys, food became “the principal topic of conversation, reading, and daydreams.”  The volunteers studied cookbooks and collected cooking utensils.  Three of them went on to become cooks even though they’d had no interest in cooking before the experiment.  When starving, people may obtain vicarious satisfaction from cooking and watching others eat.

In my own experience, I contracted severe food poisoning during my second pregnancy.  Unable to eat without severe consequences, my doctors instructed me to forgo solid food for a full week.  I remember clearly that I spent the week lying in bed (entertaining my toddler) and watching cooking shows.  It seemed nonsensical to me at the time, like an unusual form of self-torture.  But, now I know it was an attempt to vicariously soothe my intense hunger.

In her book Brave Girl Eating, Harriet Brown discusses how her daughter went through a “foodie” phase during the onset of her anorexia.  I have seen a similar profile in a number of my young clients.  Parents do not usually think these are signs of trouble and are more often impressed by their child’s sophistication.  Some of the less obvious early signs of starvation parents should watch for include:

  • Reading recipes
  • Blogging about food
  • Cooking food they do not eat
  • Watching cooking shows

Of course, not every child who shows a strong interest in cooking has or will develop anorexia, but it is something that should pique a parents’ interest.

My own daughter went through a phase where she was obsessed with cooking and watching cooking shows.  It so happened that she was not eating enough at this time, which coincided with the start of her adolescent growth spurt.  I did an early FBT-like intervention and she gained and grew; as she did, the obsession with cooking abated.  Was this merely a passing phase or anorexia averted?  I’ll never know, but I’m glad I intervened.  (More about that in future post.)

When a child with a diagnosis of anorexia shows these behaviors, I recommend that they be stopped.  In FBT, parents take charge of their child’s food and food environment.  Food is the child’s medicine and the number one priority.  For this reason, vicarious gratification of hunger should be removed.  Children with anorexia should not be watching cooking shows, reading recipes, or cooking.  I usually recommend that children do not participate in preparing their own food at all in Phase 1.  In Phase 2, children gradually get involved in food preparation again, but the usual rule I recommend is that if they make something, they must eat it.

Surviving the first week of re-feeding

Surviving the first week of re-feeding your child using Maudsley Family Based Treatment

Figuring out how to get your starving child to eat and gain weight is a daunting task. Parents often feel overwhelmed and helpless when starting out on a re-feeding program. It is important to remember that your child is literally more afraid of the food than of dying of starvation. But food is the medicine, and it is your job to save her (or his) life.

Anorexia makes children do things they would never normally do and an escalation of behavior is common when parents start to stand up to the anorexia. In fact, an escalation during the first week, although unpleasant and often scary, is usually a good sign that parents are not giving in to the anorexia. Consistent confrontation of the anorexia ultimately brings greater compliance as well as weight gain. It is imperative that parents work together and are well aligned; otherwise the anorexia can split them and gain strength. Continue reading “Surviving the first week of re-feeding”