Self Reported Nutrition Concerns in Scleroderma

Research Article

Ann Nutr Disord & Ther. 2014;1(3): 1015.

Self Reported Nutrition Concerns in Scleroderma

Maureen A Murtaugh1* and Tracy M Frech1

1Department of Internal Medicine, University of Utah, USA

*Corresponding author: Maureen Murtaugh, Division of Epidemiology, Department of Internal Medicine, University of Utah, 295 Chipeta Way, Salt Lake City, 84108, USA

Received: November 25, 2015; Accepted: December 11, 2014; Published: December 12, 2014


Introduction: Gastrointestinal involvement is a nearly universal symptom in systemic sclerosis (SSc, scleroderma). Few studies have investigated nutrition practices in SSc. The purpose of this study was to assess dietary practices, self awareness of nutritional status, and influence of diet on symptoms of gastrointestinal involvement in SSc patients who had received the Scleroderma Foundation "Eating Well with Scleroderma" handout.

Methods: Patients were provided the "Eating Well with Scleroderma" handout from the Scleroderma Foundation. At a follow-up visit patients were asked if they had noted any weight loss, if they weigh themselves, if they had identified food that bother their stomach or gut, whether they follow a special diet, and whether they take a PPI and/or probiotic. The UCLA SCTC GIT 2.0 questionnaire, a validated instrument for evaluation of patient-reported outcomes involving the gastrointestinal tract, was administered.

Results: All patients reported that their diet influenced their gastrointestinal symptoms. BMI was similar regardless of whether weight was stable, increased or decreased over the past 6 months. Few patients (n=3) lost more than 5 pounds over the past 6 months. Patients who had a weight loss over the past 6 months, more often reported following a special diet, having moderate to severe reflux, and using probiotics than patients with stable or increasing weight. Limiting spicy, greasy and acidic foods was the most commonly reported dietary modification.

Conclusion: Patients are universally aware that diet affects gastrointestinal symptoms. This series of patients reported use of probiotics and dietary modifications, particularly those who lost weight and had moderate to severe reflux. Although patients received the "Eating Well with Scleroderma", these results highlight the need to guide nutritional interventions in SSc according to gastrointestinal symptoms.

Keywords: Scleroderma; Nutritional status; Dietary intake; Gastrointestinal symptoms


The point prevalence of malnutrition risk in scleroderma across the globe is estimated to be between 15 and 25% [1-5]. A small corpus of literature on body composition suggests that lower lean body mass [6] with variable fat mass [7] is associated with disease outcome. Malnutrition in systemic sclerosis (SSc, scleroderma) is associated with longer duration of disease, diffuse cutaneous disease, physician assessment of disease severity, low hemoglobin, restricted oral aperture, abdominal distention and decrease in psychosocial wellbeing [5,7,8]. A recent report found that gastrointestinal symptoms were not associated with Body Mass Index (BMI), but was associated with decreased quality of life [9]. Unfortunately, traditional markers of nutritional status, including current weight status (BMI) and serum albumin do not seem to be good indicators of malnutrition in SSc [7,8,10].

In contrast, weight loss has long been identified as a characteristic of progression of SSc and is included in the Medsger Severity Scale [11]. However, dietary intake, nutritional counseling, and dietary modifications of patients with SSc have received little attention. A single report of dietary intake of 30 patients with SSc did not reveal differences in energy or nutrient intake [6]. However, in these SSc patients lower serum levels of nutrients and about half anthropometric measures were identified suggesting poor nutritional status. This mismatch in reported intake and physical signs of malnutrition suggests that malabsorption and, or episodic reductions in dietary intake are likely to be involved.

The import of good nutrition to the course of SSc is communicated to patients via the Scleroderma Foundation "Eating Well With Scleroderma" handout (Eating Well with Scleroderma).This is a broad guide to nutrition beginning with a description of symptoms of malnutrition in general and of protein malnutrition and general principles of good nutrition. Suggestions for many other specific issues those patients with SSc face, including the following: Dietary modifications to cope with chewing and swallowing difficulties; specific suggestions for increasing intake for individuals with large amounts of unintentional weight loss; The low Fermentable Oligosaccharides, Disaccharides, Monosaccharide's and Polyols (FODMAP) diet; reflux; inflammation; poor circulation; tight skin; and decreased gastrointestinal motility. This handout is a valued resource for SSc patients and is utilized routinely at many SSc centers to educate patients. Weight status is a common vital sign documented at clinic visits. However, there is little known about dietary modifications among patients with SSc in relation to their weight change. Therefore, the purpose of this work was to ascertain dietary practices among patients with SSc concomitant with gastrointestinal symptoms and recent weight change.


All procedures were approved by the University of Utah IRB project 38705. We recruited 50 consecutive patients with SSc, who were consented for nutritional and dietary assessment, and presented for a follow-up visit which was 3-6 months after their last visit where they had received the Scleroderma Foundation "Eating Well with Scleroderma" handout (Eating Well with Scleroderma). At their follow-up visit, these SSc patients were asked to respond to a brief questionnaire which was designed to determine current dietary practices, beliefs about diet and gastrointestinal symptoms, probiotic and proton pump inhibitor use, weight changes over 6 months and physical signs of malnutrition (temporal wasting). All patients also responded to the University of California, Los Angeles Scleroderma Clinical Trials Consortium Gastrointestinal Tract Questionnaire (UCLA SCTC GIT 2.0), which assesses gastrointestinal tract symptomatology.

Demographic information (age, race/ethnicity); clinical characteristics (duration of SSc from the first non-Raynaud's symptom; SSc specific antibodies); and physical exam characteristics (height and weight; modified Rodnan Skin Score (mRSS), edema, and temporal wasting) were collected at the clinic visit by the attending physician. The mRSS ranges from 0 to 51, based on assessment of skin thickness at 17 surface anatomic areas of the body. We additionally obtained information regarding presence of other gastrointestinal disease such as celiac disease, ulcerative colitis or Crohn's disease.

The UCLA SCTC GIT 2.0 questionnaire sub-scales and total scores were calculated using the method described by Khanna et al [12]. The result can be interpreted as a score or as a categorical evaluation (mild, moderate and severe) of each sub-scale and the total score.

Statistical analyses were conducted using SAS version 9.4 (SAS Inc, Carey, NC). Demographic and clinical characteristics were described using frequency for categorical variables (e.g., gender, type of special diet followed). We used mean and standard deviation to describe normally distributed continuous variables and median and inter quartile range to describe variables with skewed distributions. Differences in categorical variables or classification of gastrointestinal symptoms across levels of self-reported weight change were determined using chi-square or fishers' exact when cells included fewer than 5 observations. Differences in continuous variables across levels of weight change were ascertained using Wilcoxin ranked-sum test.


The vast majority of patients were female and white (Table 1). The age range was 26 to 79 with a mean of 56.6. Disease duration ranged from 1 to 35 years with 6 years as the median duration. The median mRSS was 6 with a range from 0 to 32. Four individuals had no Scleroderma antibodies; presence of anti-centromere was the most common.