Eating Disorders Support Network

If you have observed changes in patterns of behaviours around food, weight or body image that cause you to be concerned about a loved one then express your concern to the person sooner rather than later.

Problems with eating and body image may or may not become a full-blown eating disorder. But determining when a problem becomes a disorder can be difficult.
Eating disorders are complex interaction of physical, mental and social factors and may not initially be easy to recognise in another person.

Consider if physical or mental health is being negatively affected by concerns for body image, food choices and/or exercise? Are beliefs around food, weight and body image leading to unhealthy patterns of behaviour –

eg. restricted eating; bingeing; vomiting after eating; avoiding complete food groups; must earn the right to eat or over exercising as a punishment for eating ; using laxatives/diuretics; avoiding social eating; negative change in relationships; erratic mood and drop in energy levels; withdrawing from from friends and family.

The physical health complications caused by an eating disorder can quickly turn life threatening so an appointment with a General Practitioner for a complete medical check (see what to expect from a GP section) is of utmost importance.

Just as importantly is seeking the help and support of a respected eating disorder organisation (see list of organisations) that can provide a multidisciplinary treatment team to ensure all psychological and medical concerns are managed.

The initial contact should be with a General Practitioner for a thorough assessment (physical and mental health) and to determine the nature and extent of any concerns. Ongoing treatment needs to be of a managed multidimensional approach to ensure the nutritional, biochemical, psychological and spiritual needs of the individual are being met.

Treatment Teams

A successful treatment team will be a cohesive and collaborative managed team of eating disorder specialized professionals and those with lived experience. It may include:

• General Practitioner – usually manages the multidisciplinary team
• Psychologist
• Registered Nutritionist / Dietitian
• Psychiatrist
• Other Specialists helpful to the individual’s recovery ie. Qualified Eating Recovery Coach
• Peer Mentors
• Social Support Groups
• The role and involvement of the family/carers needs to be agreed upon with the treatment team as parents/carers will be providing the most support through to recovery. Privacy and confidentiality issues may impact the sharing of health records and treatment information to parents/carers. Caring health professionals and Eating Disorder Support Organisations will help parents/carers navigate the system to gain permission to access necessary information so they can support their loved one through to recovery.

Types of Treatment

A cohesive managed treatment team will aim to provide a holistic and realistic approach to treatment based on the individual’s needs. Treatment models include but are not limited to the following:

• Outpatient Treatment (collaborative team of professionals usually managed by the General Practitioner)
• Intensive Outpatient Treatment (often includes structured programs including groups and therapies organized by hospital or specialized eating disorder organisations – usually managed by the GP)
• Partial Hospitalization (regular medical treatment in a hospital for a portion of each day coupled with outpatient programs run by the hospital)
• Residential Treatment Inpatient (treating the whole person in a real environment that provides a continuum of 24hour care, structured programs, individual and group sessions, normalizing behaviours, aftercare planning, relapse prevention, nutritional counselling, social supports)
• Hospital Inpatient Treatment (medical monitoring, stepped continuum of care using multidisciplinary teams and regular reviews to support recovery)

Recovery Treatment Plan

A recovery treatment plan is designed to best fit the needs of the individual, their primary disease/disorder and any co-occurring disorders or behaviours. It should be designed around the person’s motivation and readiness to recover and follow a smooth, staged and continuous process that includes:

• A clearly outlined continuum of steps to recovery that everyone understands
• A multidisciplinary team of dedicated specialized treatment professionals that work collaboratively
• Scheduled regular reviews of the plan and its effectiveness
• Active inclusion of the individual and the family/carer support in all steps/stages
• Respectful of the social, emotional and financial support needed for long term recovery
• A relapse prevention plan including treatment interventions for relapse.

What to expect of the General Practitioner

• Detection and diagnosis
• Monitoring of physical health
• Treatment (both pharmacological and non-pharmacological)
• Acting as case manager where appropriate or secondary referral
• Continuity of Care for the patient and family and carers were possible
• Collaborating with self-help groups and community agencies
• Managing chronic patients

Initial Care and on a regular basis:

• A physical examination to check – height, weight, temperature, pulse, blood pressure
• A physical examination of the abdomen, skin, hair, nails, throat and teeth
  Complete blood cell count White, Red, Haemoglobin, Haematocrit, Platelet, Mean Corpuscular Volume
• Electrolytes Potassium, Calcium, Sodium, Phosphorus, Magnesium, Bicarbonate, Chloride
• B12 and Folic Acid
• Blood glucose
• Kidney function tests
• Liver function tests
• Cholesterol
• Thyroid function tests
• Urine Tests Ketones, complete Urinalysis

Other Tests

• Orthostatic blood pressure
• Bone density test
• Electrocardiogram
• Infertility Testing

Weekly reviews:

Criteria for immediate specialised medical intervention (this is a guide only every individual is unique):

• Rapid or consistent weight loss
• Marked orthostatic hypotension with an increase in pulse of 
>20bpm or
• A drop in blood pressure of >20mmHg/min standing
• Bradycardia below 40bpm
• Tachycardia over 100bpm or
• Inability to sustain body core temperature i.e. <36°C 

• Electrolyte imbalance (Potassium, Phosphate, Magnesium)

Eating disorder behaviours in simple terms, “serve a function”. A person may consciously or unconsciously use an unhealthy behaviour to cope with a situation in which they feel uncomfortable, unsafe, misunderstood, insecure or out of control. The “how and why” will be different for each individual but some common emotional limitations include:

• Lack of – self worth, control in their life, power, trust in self and/or others
• Feelings of – not belonging, not fitting in, not able to cope, not being good enough
• Desire – for respect, for admiration, to be perfect, to be thin, to be in control, to escape

The eating disorder behaviour may provide the person with little more than momentary/ temporary feelings of:

• numbness, comfort, control, distraction, structure, soothing, predictability, routine, self-cleansing, self-punishment, release of anger/anxiety, rebellion and even identity.

Deep psychological stress may be released through these behaviours therefore understanding why the behaviour exists is crucial to successful treatment.

Because eating disorders disorders are a complex interaction of an individual’s biology, psychology and social factors, signs and behaviours can combine to be unique to the individual.

An eating disorder diagnosis requires medical and psychological screening. For an official diagnosis of an eating disorder an individual will meet the clinical diagnostic criteria set out in the current edition of the DSM for Mental Health used by health professionals. Certain behaviours and physical signs and symptoms may be common to other illness and disorders and therefore need to be investigated and diagnosed by a specialised professional.

Some behaviours to watch for:

• Aware of the calorie content of all foods?
• Preoccupation with food – reading recipes, researching nutritional content, cooking for others?
• Allowing food to control situations – type, amount, timing of meals?
• Replacing meals and snacks with coffee, diet drinks and stimulants (caffeine/energy tablets)
• Taking longer than others to eat meals?
• Cutting food into small pieces, arranging food into colour groups?
• Expressing guilt after eating?
• Visiting the bathroom after eating?
• Eating with the family/socially less often and/or in secret?
• Regularly weighing of self?
• Need to have scales available?
• Gazing in the mirror and commenting about being fat?
• Unusually overactive around the house (doing the stairs) or over exercising especially after food?
• Impulsive behaviour/self harm?

An individual’s emotional and mental development, social-cultural influences, life events, personal and family relationships, genetic predisposition and biological vulnerabilities can affect the eating disorder behaviours. Some more common signs and behaviours can include :

Weight loss, weight fluctuation, fear of gaining weight, dieting, bingeing, restricting whole food groups, suddenly becoming a vegetarian or vegan, avoiding social eating, introducing rituals to eatings, mood fluctuations, lack of energy, feeling faint/dizzy, inability to get warm, wearing baggy clothes, heightened anxiety and stress (especially about food), difficulty concentrating, obsessive and compulsiveness, depression, anger, lack of menstruation (female), fine body hair – some or many of these may be indicators of an eating disorder.

If you are concerned that a loved one may have an eating disorder the sooner you discuss your concerns the better. Choose a time in a private safe environment when you will not be interrupted. Express your concern about what you have observed and be prepared with information and suggestions for providing support. You will have no control over the person’s behaviour but you will be able to control the situation by staying calm and not engaging in argument or power struggle. This may be the first of many discussions and keeping trust and open communication is vital to what may be a serious illness.

There are a number of national organisations that provide information about awareness, prevention and available treatment programs for those suffering from or living with someone who is suffering from an eating disorder. Try a local search for groups and organisations that may have formed in response to demand for carer/recovery support. If there is a desperate need for help call Lifeline on 13 11 14 or use the Crisis Support Chat www.lifeline.org.au option.

Where to find more information or find a service?

• The Butterfly Foundation
• Eating Disorders Australia
• The Eating Issues Centre
• National Eating Disorders Collaboration
• Eating Disorders Families Australia
• F.E.A.S.T
• Eating Disorder Hope
• Around the dinner table forum
• Something Fishy
• Headspace

Books to read

• 100 Questions & Answers About Eating Disorders – Carolyn Costin
• The Eating Disorder Sourcebook – Carolyn Costin
• 8 Keys to Recovery from an Eating Disorder – Carolyn Costin & Gwen Schubert Grabb
• Your Dieting Daughter – Carolyn Costin (Body image and healthy self esteem)
• Help Your Teen Beat an Eating Disorder – James Lock
• Mom in the Mirror : Body Image, Beauty and Life after Pregnancy – Dena Cabrera PsyD and Emily T. Wierenga
• Midlife Eating Disorders: A Journey to Recovery – Cynthia M. Bulik Ph.D
• Body Wars : Making Peace With Women’s Bodies – An Activist’s Guide – Margo Maine
• The Body Image Workbook : An Eight-Step Program for Learning to Like Your Looks – Thomas Cash
• A Trick of Light – Lois Metzger (a novel about a young man’s struggle with anorexia)
• Shattered Image : Brian Cuban (male body dysmorphia and struggling with addiction)
• Biting the Hand that Starves You : Inspiring Resistance to Anorexia/Bulimia – A. Borden, D. Epston, R. Linn Maisel
• Life Without Ed – J. Schaefer (Audiobook available)
• Goodbye Ed, Hello Me : Recover from Your Eating Disorder and Fall in Love with Life – J. Schaefer
• Pound for Pound – Shannon Kopp (Bulimia)
• Reclaiming Yourself from Binge Eating – Leora Fulvio
• Overcoming Binge Eating, 2nd Edition: The Proven Program to Learn Why You Binge & How You Can Stop – Dr Christopher G. Fairburn
• Answers to Binge Eating – New Hope for Appetite Control – Dr James M Greenblatt
• Cravings: How I Conquered Food – Judy Collins (Compulsive overeating)
• Intuitive Eating – Evelyn Tribole and Elyse Resch (Freeing the relationship with food)
• Recovery Is: Stories of Healing – Liana Rosenman and Kristina Saffran
• You Are Not Alone, Volume 2 – Shannon Cutts and Andrea Roe (book with companion CD)
• Chasing Silhouettes – Emily T. Wierenga (Christian perspective)
• Eating Disorders : A Handbook of Christian Treatment : New Treatment Guide for Eating Disorders Available to Healthcare Professionals – Remuda Ranch (Christian perspective)
• Hope for the Hollow – Jena Morrow (Christian guide and journal)
• Surviving an Eating Disorder : Strategies for Family and Friends – M. Siegel, J. Brisman, M.Weinshel
• Difficult Conversations – Douglas Stone, Sheila Heen and Bruce Patton
• Caring for a Loved One with an Eating Disorder V3 A carer’s guide to understanding the illness and Keeping Well – Austin Health, St Vincent’s Hospital Jan 2015 (Aust)

Research into the area of genetics and eating disorders is still in its infancy. There are some physicians that will look into genetic heritability and request a MTHFR gene test especially if there is some evidence of eating disorders or other health issues linked to eating disorders “running in the family”.

MTHFR Gene Test

A GP may order a test on the enzyme that converts the folate you eat into the active form that your body needs to use. This test is known as the MTHFR Gene Test. It will provide the GP with information of a mutation in one of these genes or a problem with the methylation cycle and can help explain some conditions as well as feelings of long standing fatigue and issues of things like inflammation, chronic constipation, elevated homocysteine levels, low B12 levels, depression etc.

What does it mean if the test comes back positive?

It does not mean that you WILL have health issues. It is very specific to the individual and is influenced by many factors including the person’s diet, environment and stress levels.

A positive result does mean that there is a mutation of the C677T and/or A1298C causing down-regulation of the enzyme Methylene-TetraHydroFolate Reductase (MTHFR) and therefore a loss of function (dependent on the combination of gene mutations from parents).

As other genes are also involved in the methylation pathway it is extremely important that the GP knows about and understands how to treat methylation issues.

Learn more – free webinar: www.mthfrsupport.com.au/what-is-mthfr/

After ensuring the person is receiving the best level of treatment/care by professionals the next step to providing a supportive environment is to get support for yourself. Gain knowledge, seek guidance and ask for support from people with lived experience. (see list of organisations/books etc)

By taking care of your personal health and well being you are not only demonstrating the importance of self care to your loved one but you are properly preparing for the emotional, physical and psychological demands of supporting a person with a severe and enduring illness like an eating disorder.

Remember:

• You cannot change a person’s behaviour but you can manage the situation and change your own behaviours.
• It does no good to argue. Be firm, reasonable and consistent with the rules of the house/relationship.
• Continue normal healthy eating patterns for others in the home.
• Go to therapy together / as a family/couple – everyone has a right to have their feelings heard.
• Don’t blame or shame – choose your words carefully. This is an illness not a lifestyle choice.
• Pleading, threatening, bribes and punishments will not help.
• Ensure your unconditional love is on display – words, hugs, spending special time, sharing memories
• There is no quick fix – it will most likely be a slow road to recovery – be patient.
• Do not engage in battles that are best handled by the professionals.

Accept that you will make mistakes and say the wrong thing. Apologise, mean it, move on.

No one has the answer – YET !!!