ARRC – Autoimmune Resource & Research Centre

This main report was written by students of University of Newcastle as part of the requirement for the degree of Bachelor of Health Science (Nutrition & Dietetics) University of Newcastle.


Autoimmune diseases are chronic inflammatory disorders that arise from the overstimulation of the immune system and the recognition of the body’s own cells as foreign.  Five percent of the population suffer from autoimmune disorders and the term encompasses a variety of diseases.

Upon conducting a literature review, it was found that limited evidence regarding nutrition and autoimmune disorders is available. The Immunology Dietitian at the John Hunter Hospital reports a relatively low referral rate for patients with autoimmune illnesses. This has been identified as concerning, as many of the symptoms associated with autoimmune illnesses may place individuals with these disorders at risk of malnutrition.

Malnutrition results when the body’s nutrient requirements are not met. Autoimmune patients are at risk of developing malnutrition due to compounding symptoms such as digestive problems, lack of appetite, fatigue, difficulty swallowing and mouth dryness. Some patients may also eliminate certain foods/food groups from their diet in an attempt to assess their effect on symptoms. Some medications, such as methotrexate, may also reduce the absorption of various nutrients, potentially leading to inadequate nutrition. Hence this study identifies the importance of nutritional management of autoimmune disorders, in aiming to reduce the risk of malnutrition in these individuals.


This report endeavours to investigate the nutritional needs of individuals with autoimmune disorders. For the purpose of this report, emphasis is placed upon Lupus, Scleroderma and Sjogren’s Syndrome. It endeavours to identify possible areas for future nutrition related research to be undertaken by the ARRC in conjunction with the John Hunter Hospital Nutrition and Dietetics department. It also aims to improve patient care by identifying areas of nutritional need for autoimmune patients and subsequently implementing interventions related to symptom management.


Two Hundred and Fifty Five, 24 question Nutritional Needs Assessment surveys were distributed at support group meetings and by mail to individuals with autoimmune disorders. An additional 50 electronic copies were sent to recipients of the ARRC-HIVE newsletter.

Two semi structured focus groups were also conducted to gain deeper insight into the issues arising from the Nutrition Needs Survey.  Focus Group 1 was attended by individuals living with Scleroderma and Sjogrens Syndrome, and focus group 2, lupus and/or Sjogrens Syndrome. Data extrapolated from the Nutrition Needs Survey was used to develop focus group questions. The purpose of conducting focus groups was to further enhance our understanding of the nutritional needs of autoimmune patients. Open questions were used to gain further insight into the personal experiences of group members and ensure a free flowing discussion with little interjection from focus group facilitators.


This report has highlighted the importance of diet and nutrition in the management of lupus, scleroderma and Sjogrens Syndrome. However research surrounding this area is limited and therefore few autoimmune patients, GP’s and treating specialists recognise the potential benefits of diet related therapy. This is concerning as certain dietary behaviours employed to reduce symptoms, such as eliminating foods from one’s diet, may lead to malnutrition. As patients endeavour to manage their symptoms, inadequate nutrition may ultimately be decreasing their overall health.

This paper has demonstrated a lack of knowledge among individuals with autoimmune illnesses regarding the dietitian’s role in the management of their disorder. Diet was secondary to other debilitating symptoms including pain and immobility, explaining the underutilisation of dietetic services. Further to this, training programs and updated fact sheets are required to promote the role of a dietitian, hence aiming to increase dietitian referrals. A multidisciplinary approach is considered by the participants to be effective in the treatment of individuals with autoimmune disorders. However, it has been identified that further nutritional education on these conditions is required for these health professionals.

It must be taken into consideration that certain aspects of research during this study were not representative, due to the small sample size and method of obtaining the sample. Although this process has its limitations, this method was the most effective and time efficient means of data collection for the purpose of this study. Ultimately before any strong conclusions can be drawn, further research into the emerging field of nutrition and autoimmune disease is imperative.


The combined data from the survey and the focus groups highlighted many possible avenues where nutritional interventions could be implemented by health professionals for individuals with lupus, scleroderma and Sjogrens Syndrome.