Quebecers with celiac disease: Analysis of dietary problems
The only known treatment for celiac disease is lifelong avoidance of dietary gluten. For many sufferers from celiac disease, this may be difficult to achieve. The purpose of this study was to analyse dietary habits and related problems of adults afflicted with celiac disease. A questionnaire was mailed to 617 current and former members of the Quebec Celiac Foundation to document health, dietary habits, sources of celiac disease treatment information, daily concerns, and level of difficulty in complying with a gluten-free diet. The final sample size was 234 (75% female). Results indicated that over 35% of participants experienced intestinal discomfort at least twice a week. In addition, 66% felt that their consumption of grain products was insufficient. Only 44% said they had received from dietitians a large quantity of information about celiac disease treatment, and only 57% had a high level of confidence in the information received from dietitians. Thirty-six percent reported difficulty in complying with the gluten-free diet. According to a probit analysis, larger region of residence (p
(Can J Diet Prac Res 2001; 62:175-181)
Le seal traitement connu de la maladie coeliaque est la suppression du gluten dans l’alimentation tout au long de la vie. Pour de nombreuses personnel souffrant de cette maladie, l’objectif peut etre difficile a atteindre. Cette etude avait pour but d’analyser les habitudes alimentaires des adultes atteints de la maladie coeliaque et les problemes qui y sont lies. Un questionnaire a ere poste a 617 membres actuels et anciens de la Fondation quebecoise de la maladie coeliaque pour connaitre leur etat de same, leurs habitudes ahmentaires, leurs sources d’information sur le traitement de la maladie, leurs preoccupations quotidiennes et leur difficulte a se conformer a un regime sans gluten. L’echantillon final etait compose de 234 personnel (75 % de femmes). Les resultats ont montre que plus de 35 % des participants eprouvaient des malaises intestinaux au moins deux fois par semaine. De plus, 66 % estimaient que leur consommarion de produits cerealiers etait insuffisante. Seulement 44 % ont declare avoir requ des dietetistes une quantite substantielle d’information sur le traitement de la maladie coeliaque, et 57 % seulement avaient un degre eleve de confiance dans l’information revue des dietetistes. Au total, 36% ont mentionne qu’ils eprouvaient des difficultes a suivre un regime sans gluten. Selon une analyse probit, la vie dans une grande ville (p
Celiac disease is an enteropathy resulting from sensitivity to gliadin, a fraction of wheat gluten, and to other prolamins found in rye, barley, triticale, and oats (1). The disease is characterized by atrophy of the small bowel villi, which alters nutrient absorption and may compromise the afflicted person’s nutritional status (2). The only known treatment is a lifelong gluten-free diet that helps to eliminate symptoms and clinical manifestations, improves nutritional status, and prevents or reduces complications (3). Adequate replacement of restricted grain products by gluten-free substitutes is difficult, and failure to achieve this may lead to dietary inadequacy (4). Previous studies on the food habits of Canadians with celiac disease are scarce and focus mainly on nutrient intakes and satisfaction with gluten-free products (4,5). The present investigation was undertaken to analyse further the dietary habits and related problems of people afflicted with celiac disease.
Sampling and data collection
The population of interest for this study consisted of all adults in the province of Quebec who were diagnosed with celiac disease. A simple random sample of 617 out of approximately 1,700 current and former members of the Fondation quebecoise de la maladie coeliaque (Quebec Celiac Foundation) was selected from the membership lists.
In fall 1996, each person selected received a mailed questionnaire and a cover letter explaining the study’s objectives and the steps taken to ensure confidentiality. The questionnaire, which seven celiac disease sufferers had pretested to verify question comprehension, comprised 229 items grouped into five sections: sociodemographics, health, food purchasing and consumption habits, information sources and concerns related to celiac disease, and perceptions of biogenetic foods. (Results from this last part of the study are published elsewhere (6)). The majority of questions were inspired by previous authors (5,7). The questionnaire was in French, and most responses were measured using Likert-type scales.
Respondents returned th self-completed questionnaires in postage-paid envelopes. No follow-up reminder was sent to nonrespondents.
The main sociodemographic variables in this study were sex, age, education level, gross household income, and region of residence. Self-perception of health status, duration of celiac disease symptoms before diagnosis, frequency of celiac disease symptoms since diagnosis, presence of other health problems, and other food allergies and intolerances were retained as health-related variables.
The following variables measured food habits:
Self-perception of adequacy of intake of each food group in Canada’s Food Guide to Healthy Eating (CFGHE).
Self-perception of energy intake adequacy.
Self-reported compliance with a gluten-free diet.
Intake of multivitamin and mineral supplements.
Frequency of consumption of gluten-containing foods.
Reasons for consuming gluten-containing foods.
Use of food labels when purchasing foods.
Frequency of eating out.
Frequency of consumption of gluten-free breads and grain products.
Satisfaction with these products.
The following variables were used to examine information sources and celiac disease sufferers’ concerns:
Quantity of celiac disease information received.
Level of confidence placed in different information sources and health professionals consulted about celiac disease.
Worries about coping with the disease and difficulty in complying with a gluten-free diet.
All statistical analyses were performed with SPSS software. After baseline descriptive and bivariate statistics were produced, both logit and probit analyses (8) were conducted to predict difficulty in complying with the gluten-free diet. This multivariate technique was used to determine the effects of the independent variables on the probability of difficulty complying with the gluten-free diet. Zero indicated difficulty. Because probit analysis yielded better predictions of difficulty than logit analysis, only probit results are presented.
Response rate and sample demographics
A total of 299 questionnaires were returned, for a 48% response rate; however, 20 questionnaires were discarded because they were incomplete or because the respondents indicated they were not following a gluten-free diet. An additional 45 respondents were excluded because they were under age 18, were suffering exclusively from dermatitis herpetiformis, or had not been diagnosed with celiac disease by a physician. Thus, the final sample size was 234.
Table 1 shows sample demographic characteristics. Most respondents (75%) were female. Ages ranged from 18 to 84 years, with an average of 49.6 (sd= 12.7). Over 50% of respondents had completed Quebec community college programs or had university degrees. The median gross household income was between $40,000 and $60,000 a year. At the time of the survey, 25% of respondents were living in the Quebec City area, 40% in the Montreal metropolitan area, and 35% in rural regions of Quebec.
Sixteen percent of the sample considered that, compared with the health of others their age, their health was generally excellent. Twenty-eight percent, 27%, 24%, and 6% rated their health as very good, good, fair, and poor, respectively. Respondents reported that they had suffered from celiac disease symptoms for an average of 10.2 years (sd= 14.2) before the disease was diagnosed. Thirty percent said they had at least one food allergy or intolerance in addition to gluten intolerance; the most common was intolerance/allergy to milk (in 21% of the sample). In addition, 27% reported other health problems that made them avoid certain foods. These health problems included hypercholesterolemia (in 9% of respondents), diabetes (in 5%), hypertension (in 4%), and hypoglycemia (in 3%).
Celiac disease symptoms
Between the time of diagnosis and the time of the survey, many respondents experienced frequent celiac disease symptoms (Table 1). Over 35% experienced intestinal discomfort at least twice a week. The most commonly reported symptoms were distension and flatulence.
After being told the recommended servings per day for adults along with examples of servings for each CFGHE food group, 79% of respondents estimated that sufficient amounts of meat and alternatives were present in their diet. A smaller majority (57%) reported the same for dairy products and for vegetables and fruit. However, only 34% of subjects felt they had sufficient intakes of grain products. Forty-one percent of respondents took daily multivitamin and mineral supplements.
Although 90% of the subjects reported avoiding all gluten-containing foods as much as possible, a majority admitted intakes that ranged from a few times a year for 49% of the sample, to about once a week for 13%, to a few times a week for 10%. The main reasons for eating gluten-containing foods were by mistake (65%), by choice (36%), and by obligation (27%). When asked, in general, how much difficulty they experienced following a gluten-free diet, 36% answered “no difficulty,” 29% “slight difficulty,” 28% “moderate difficulty,” and 8% “much difficulty.”
Most subjects said they read food labels often (16%) or very often (79%) when purchasing food. Sixty-five percent of subjects said they ate at least one meal a week away from home.
Table 2 shows the reported frequency of subjects’ consumption of various gluten-free products. Gluten-free white bread was by far the most frequently consumed cereal product. Level of satisfaction with gluten-free products is also shown in Table 2. A majority of respondents said they were somewhat or very satisfied with gluten-free product labels, regional availability, taste, variety, and texture. However, only 12% were satisfied with the price of gluten-free products.
Celiac disease information sources and concerns
The vast majority of respondents reported that they had received a large quantity of information about celiac disease treatment from a celiac association (Figure 1). Gastroenterologists and dietitians also appear to have provided a large quantity of information. For almost one-third of those sampled, others with celiac disease were an abundant source of information. Only a minority of respondents reported that they had received a large quantity of treatment information from other health professionals or alternative medicine practitioners.
Most respondents had a high level
of confidence in celiac associations as a source of information (Figure 1). However, only 66%, 57%, and 40% exhibited such confidence in gastroenterologists, dietitians, and others with celiac disease, respectively. Only 25% of respondents had a high level of confidence in family physicians as a source of celiac disease treatment information. Very few had a high level of confidence in pharmacists, nurses, homeopaths, and naturopaths.
Table 3 shows respondents’ level of concern about issues related to living with celiac disease. A majority were quite concerned about being obliged to read all food labels, having to eat gluten-free bread, and being able to eat in a restaurant. Planning and cooking gluten-free meals, planning and taking vacations, being able to eat with family and friends, a lack of variety in their diet, fear that their children would have the disease, and being able to take gluten-free medicine also caused a significant level of concern for a majority of respondents. Probit analysis
Because a considerable proportion (36%) of celiac disease sufferers experienced moderate or much difficulty in following a gluten-free diet, an exploratory theoretical model was developed in an attempt to explain this difficulty. The final model was based partly on previous papers on diet compliance (9-11) and partly on the strength of bivariate correlation coefficients between potential independent variables and reported compliance difficulty. Standard tests for multi-colinearity revealed that it was not a concern.
Results from the probit analysis (Table 4) indicate that five of the hypothesized independent variables were significantly related to difficulty in complying with the celiac diet. Older age, satisfaction with gluten-free products, and a high level of confidence in gastroenterologists and dietitians as sources of treatment information were inversely associated with compliance difficulty. Larger region of residence and worry over planning and cooking gluten-free meals were positively associated with compliance difficulty. The remaining independent variables had no statistically significant impact. When the reported levels of difficulty were compared with those predicted by the probit analysis, the theoretical model was able to predict the level of difficulty correctly for 80% of respondents.
Grain products intake
In this survey, the majority of celiac sufferers felt that, except for grain products intake, their diet was in accordance with CFGHE recommendations; 34% perceived their grain products intake was sufficient. This proportion is substantially lower than that in the general population. In the Quebec Nutrition Survey (12), 55% of adults reported adequate intake of five or more portions of grain products a day. Our results are, however, similar to those of Sabry and Okada (4). In that study, the authors examined seven-day food diaries of 26 Ontario adults with celiac disease. The contribution of grain products to total energy intake was lower among these people than among the general Canadian adult population. In combination, these results suggest the serious difficulty that many people with celiac disease experience in attempting to replace regular cereal products with gluten-free foods. In the present study, 41% of subjects took daily multivitamin and mineral supplements. Possibly these subjects were hoping to compensate for inadequate food intake.
Intake of gluten-containing foods
While a large majority of participants said they complied with a gluten-free diet, 72% reported consuming gluten-containing foods. To explain this paradox, most respondents declared that gluten consumption occurred by mistake. Campbell et al.’s survey (7) of 1,294 Canadian Celiac Disease Association members had similar findings: 71% of respondents reported occasional intake of gluten-containing foods, and 63% of these claimed that the intake was accidental.
Although people with celiac disease make a serious effort to comply with their diet and most read labels when purchasing foods, unintentional intake of gliadin or other toxic prolamins is always a danger. Food labels may be vague or incomplete. Moreover, ingredient lists do not very often divulge the fact that regular foods (13), and sometimes even gluten-free foods (14), may be contaminated with gliadin during food transformation processes. For people with celiac disease, avoiding processed foods as much as possible may be the only way to reduce accidental ingestion of gliadin and other prolamins.
Sources of treatment information
Our findings on information sources were quite unexpected. Only 44% of respondents rated dietitians as a source of abundant treatment information. One possible explanation for this finding could be that some dietitians have very few patients with celiac disease, and feel they lack good practice tools for helping such patients. Possibly, after providing some basic information about a gluten-free diet, the dietitians refer patients to a celiac association. As Murray (15) has pointed out, even if patients are encouraged to join support groups as an essential adjunct to the management of their disease, advice from a dietitian experienced in gluten-free diets is necessary.
Even more disturbing is the finding that only 57% of respondents had a high level of confidence in dietitians as a source of celiac disease treatment information. In the Campbell et al. (7) study, only 48% of respondents rated the quality of dietitians’ food information as excellent. Because the only treatment for celiac disease is a lifelong diet, one would expect a larger percentage of patients to have confidence in dietitians as a primary source of information. In part, this finding can be attributed to the fact that respondents who reported receiving little or no information from dietitians also reported significantly lower levels of confidence in dietitians (results not shown). Perhaps many lack confidence in dietitians because expectations about skills, tools, support, or empathy are not met. In addition, almost 50% of respondents were concerned about receiving conflicting advice; perhaps when they receive divergent information, patients trust their association more than a health professional because they believe the former is more reliable. However, in the treatment of a chronic illness, the quality of interactions between health professionals and patients is important to ensure compliance (9).
Difficulty complying with a gluten-free diet
Changes in dietary habits are difficult to attain and to maintain (10). Many obstacles can impair adherence to a diet (11), and such was the case with subjects in this study. Many had difficulty following a gluten-free diet; several factors that may explain this difficulty have been reported in other studies (5,7). In these studies, eating out was found to be a major factor. In our study, however, results from the multivariate theoretical model did not show this aspect to be of primary importance. While social worries and frequency of eating out were related to difficulty in complying, their effects were not significant.
In contrast, younger respondents were more likely to report greater difficulty in complying with a gluten-free diet. One reason could be that young adults lead more intense professional and social lives than older adults. Young people with celiac disease may be more likely to perceive the diet as constraining, as their peers generally are not experiencing health-related problems. In older people, general health may be less robust, and the need to follow a diet may be considered somewhat normal.
Another factor significantly related to difficulty in complying with a gluten-free diet was the region of residence. We were somewhat surprised to discover that, despite better availability of gluten-free products in larger cities, respondents in these communities were more likely to report difficulty following the diet. A more hectic lifestyle, with limited time for planning, shopping, and cooking meals, may partly explain this relationship.
A third factor that was negatively related to difficulty following the diet was satisfaction with the taste, texture, and variety of gluten-free products. People who are dissatisfied with these food products are left with a very restricted choice of cereal products, and they may be more tempted to eat glutencontaining foods or to abstain from grain products.
The present research also revealed a significant positive relationship between difficulty in complying with a gluten-free diet and concern about planning and cooking meals. This concern may arise from other health problems that create additional food restrictions, or from lack of time, lack of good glutenfree cookbooks, food preferences, problems with domestic organization, and so on.
Lack of confidence in treatment information from gastroenterologists and dietitians was the factor most strongly related to difficulty in complying with a gluten-free diet. Respondents who reported little confidence in these health professionals were less likely to adhere to their regimen or to experience the many benefits that a gluten-free diet could offer (16).
When compared with surveys conducted some years ago (4,5,7), this study shows that the situation has not changed much for celiac disease sufferers. The present results confirm that symptoms continue with relatively high frequency even after diagnosis. There also is a widespread perception of inadequate grain products intake and dissatisfaction with the price of gluten-free food products. Those with celiac disease live with frequent accidental intakes of gluten and have numerous worries related to their condition. They do not rate dietitians highly as sources of treatment information, and a large proportion experience difficulty in complying with a gluten-free diet.
This study also brings new insights into other factors related to compliance difficulty. The multivariate analysis indicates that lack of confidence in gastroenterologists and dietitians, concern about planning and cooking meals, and dissatisfaction with gluten-free products are among the most important determinants of difficulty complying with a gluten-free diet. These results are, of course, limited in their potential generalisability. The study sample consisted solely of Quebec residents and although the response rate was relatively high for a mailed survey, it was less than ideal.
In future, researchers need to develop better theory to guide the development and testing of theoretical models designed to explain diet compliance difficulties. Better measures of the theoretical constructs in such models are also needed.
RELEVANCE TO PRACTICE
While dietitians cannot directly address dissatisfaction with available gluten-free products, they can and should make a greater effort to inform patients about treatment. In particular, dietitians should focus on advice about meal planning and preparation. Many dietitians may feel isolated and believe that they lack good practice tools for celiac disease treatment; the profession should therefore support better networking and stronger links between dietitians and celiac associations. There is perhaps an immediate need to increase the quantity of specific and practical information that dietitians have to offer patients with celiac disease. Such information may help to instill greater confidence in dietitians’ treatment advice. In addition, the profession should be proactive in the development of practice guidelines for the nutritional management of celiac disease. We hope that awareness of our findings will encourage dietitians to improve their knowledge, skills, and resource base so that they can better meet celiac disease sufferers’ needs and expectations.
The authors acknowledge the financial support of the Conseil des recherches en peche et agroalimentaire Quebec.
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PATRICIA LAMONTAGNE, RD, MSc, Departement des sciences des aliments et de nutrition, Universite Laval, Sainte-Foy, QC;
GALE E. WEST, PhD, Departement d’economie agroalimentaire et sciences de la consommation, Universite Laval, Sainte-Foy, QC;
ISABELLE GALIBOIS, RD, PhD, Departement des sciences des aliments et de nutrition, Universite Laval, Sainte-Foy, QC
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