**SriHari Mahadev, Suzanne Simpson, Benjamin Lebwohl, Suzanne K. Lewis, Christina A. Tennyson and Peter H. R. Green \***

Celiac Disease Center, Columbia University College of Physicians and Surgeons, 180 Fort Washington Avenue, Suite 934, New York, NY 10032, USA; E-Mails: sm3455@columbia.edu (S.M.); sms2246@columbia.edu (S.S.); bl114@columbia.edu (B.L.); skl3@columbia.edu (S.K.L.); ct2398@columbia.edu (C.A.T.)

**\*** Author to whom correspondence should be addressed; E-Mail: pg11@columbia.edu; Tel.: +1-212-342-4529; Fax: +1-212-342-0447.

*Received: 1 April 2013; in revised form: 6 May 2013 / Accepted: 6 May 2013 / Published: 15 May 2013* 

**Abstract:** A gluten-free diet (GFD) is the treatment for celiac disease (CD), but due to its complexity, dietitian referral is uniformly recommended. We surveyed patients with CD to determine if dietitian use is associated with quality of life, symptom severity, or GFD adherence. The survey utilized three validated CD-specific instruments: the CD quality of life (CD-QOL), CD symptom index (CSI) and CD adherence test (CDAT). Four hundred and thirteen patients with biopsy-proven CD were eligible for inclusion. The majority (77%) were female and mean BMI was 24.1. Over three-quarters of patients (326, 79%) had seen a dietitian, however, 161 (39%) had seen a dietitian only once. Age, sex, and education level were not associated with dietitian use; nor was BMI (24.6 *vs*. 24.0, *p* = 0.45). On multivariate analysis, adjusting for age gender, education, duration of disease, and body mass index, dietitian use was not associated with CD-QOL, CSI, or CDAT scores. Our survey did not show an association between dietitian use and symptom severity, adherence, or quality of life. Delay in diagnosis was associated with poorer outcomes. This is a preliminary study with several limitations, and further prospective analysis is needed to evaluate the benefits and cost-effectiveness of dietitian-referral in the care of celiac disease patients.

**Keywords:** celiac disease; dietary services; quality of life; quality improvement

#### **1. Introduction**

Celiac disease (CD) is a common multi-system autoimmune disease, affecting approximately 1% of people worldwide [1]. Predisposed individuals develop an immune response to gluten, a protein found in the cereal grains: wheat, barley and rye. Autoimmune intestinal damage is the cardinal feature of CD, and typically involves villous atrophy, crypt hyperplasia, and increased intraepithelial lymphocytes [2]. Symptoms may be subclinical, varying from gastrointestinal upset to severe malabsorption [3,4]. Skin, nervous system, and multisystem involvement is also recognized. Strict avoidance of gluten-containing foods can reverse both enteric and extra-intestinal manifestations of the disease.

CD is unique in that its treatment consists of a dietary intervention: lifelong exclusion of gluten. A gluten-free diet (GFD) is highly effective at improving symptoms of CD in the majority of patients [5]. Nevertheless, a significant proportion remains symptomatic, and lack of strict adherence to GFD is the primary cause [6]. Those patients with celiac disease who follow a GFD frequently have persistent villous atrophy which may result from persistent gluten contamination and, in rare cases, can predispose patients to serious sequelae including T-cell lymphoma [7].

Although straightforward in principle, strict avoidance of gluten is challenging in practice. Gluten-containing products are ubiquitous and contamination may occur both consciously and unintentionally [8]. Poor labeling can make it difficult to determine which foods are gluten free, and options may be limited when eating out and traveling [9]. Moreover, a GFD is significantly more expensive, and may be deficient in certain nutrients, when compared to a regular diet [10,11]. Given the complexity of maintaining a strict GFD, multiple guidelines recommend dietetic referral for patients diagnosed with CD [12–15]. Dietitian involvement was recommended in the National Institutes of Health (NIH) Consensus Development Conference on celiac disease (2004) [16]. There is evidence that when asked to choose among several referral options, patients themselves express a preference for dietetic follow-up [17]. Nevertheless, availability of expert dietetic counselors is limited and may impact upon patient outcomes [18]. Membership in celiac advocacy groups, and regular dietetic follow-up has previously been reported to be correlate with higher rates of GFD adherence [19,20]. However there have been no studies that have directly examined the impact of dietitian use on celiac disease outcomes in the United States. As such, we sought to determine if dietitian use was associated with quality of life, symptom severity, or GFD adherence in patients with celiac disease.

#### **2. Methods**

Approval was obtained from the Institutional Review Board of Columbia University Medical Center prior to initiation of the study.

Adults (¡
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 # email or in-person. A link to an online questionnaire, hosted by SurveyMonkey, was distributed by the Celiac Disease Center of Columbia University to an email list of patients affiliated with the Center. In addition, the questionnaire was administered to attendees at celiac support group conferences in Iowa, California, and New York, and patients additionally completed the questionnaire on-paper during an office visit. Data was collected between November 2010 and July

2011. Prior to distribution, the questionnaire was administered to a group of ten patients and subsequently modified for clarity.

The survey consisted of questions on demographics, celiac disease onset, symptoms, and dietitian use. It also included three validated celiac disease-specific instruments to assess quality of life, disease activity, and GFD adherence respectively [21–23]. Patients were asked how many times they had seen a dietitian: never, once, or more than once. Patients were excluded from the analysis if they did not have biopsy-proven celiac disease, or omitted the items on gender, age, or dietitian use.

The celiac disease-specific quality of life instrument (CD-QOL) was used to assess quality of life [21]. This validated instrument consists of 20 questions across four clinically relevant subscales (celiac disease-related limitations, dysphoria, health concerns, and inadequate treatment), and asks the respondent to indicate the frequency of celiac disease-related symptoms over the previous 30 days. The questions are graded on a 5-point Likert scale labeled 1 through 5, where 1 = not at all, 2 = slightly, 3 = moderately, 4 = quite a bit, and 5 = a great deal. The responses were reverse-coded and summed, with a higher score (up to a maximum of 100) suggestive of higher quality of life. No clear cut-off point has been established to dichotomize CD-QOL scores; hence membership in the lowest quartile of CD-QOL was taken to indicate poorer quality of life.

The Celiac Symptom Index (CSI) was employed to assess celiac disease-specific symptom severity [23]. The CSI consists of 16 questions on a 5-point Likert scale; with scores ¢ 
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