World Digestive Health Day WDHD – May 29, 2016 MANAGING ADULT CELIAC DISEASE IN THE OUTPATIENT CLINIC CHRIS J.J. MULDER, MD, PHD Dept. of Gastroenterology Head of Department Celiac Center Amsterdam VU University Medical Center Amsterdam, Netherlands G. BOUMA, MD, PHD Celiac Center Amsterdam Dep. of Gastroenterology VU University Medical Center Amsterdam, Netherlands INTRODUCTION Celiac disease (CD) is a chronic enteropathy in genetically predisposed individuals in response to gluten intake.1 CD as we know it is, rather than being a rare and incurable disease until the 1950’s, both quite common in screening studies and readily treatable. The treatment is a gluten-free diet (GFD).2 Most patients report clinical improvement within weeks. However, mucosal recovery may last years after the start of a GFD.3 CD occurs only in patients who express HLA-DQ2 and/or DQ8 molecules.4 The prevalence of CD in adults varies between one in 100 and one in 300 in most parts of the world.5 Three conditions are triggered by a systemic immune reaction to gluten consumption: celiac disease, the skin rash dermatitis herpetiformis, and gluten ataxia, which involves damage to the brain, especially the cerebellum. Celiac disease is a serious medical condition that requires a long-term follow-up plan to maintain excellent health and to prevent complications from occurring. Maintaining a strict GFD is difficult in the East and West and has both financial and quality of life implications.6 Evidencebased follow-up for out clinic management should be developed in the years to come. GLUTEN FREE DIET The one and only therapy for CD is a life-long gluten-free diet. Willem-Karel Dicke started this in the Netherlands in 1933; this is over 80 years ago.2 No food, beverages, or medications containing any amount of gluten from wheat, rye, barley, spelt, kamut, or other gluten containing cereals can be taken; even small quantities can be harmful. Only food and beverages with a gluten content of maximum 20 ppm are accepted. Oats have been reported to be non-toxic in almost 100% of patients with CD.7 GFD will result in symptomatic, serologic, and histological remission in most patients. With a strict GFD, antibody levels (tTgA and EMA) decrease very rapidly.1 However, histological normalization takes 2-5 years, especially in adults.3 In children, histological normalization occurs within 3-6 months, although antibody levels can take 1-1.5 years before normalization is reached. Compliance is often difficult, especially when a patient is “asymptomatic” or does not have the classical symptoms. It helps patients and their relatives to be properly informed about the chronic disease, the do’s and don’ts, and the risk of untreated CD to increase knowledge and encourage self-empowerment of the patients. Despite the importance of adequate information, leading celiac support groups and working groups did not define guidelines so far to assess the outcome and standardize adherence to the GFD. FOLLOW UP IN GENERAL There is a lack of data about the best logistic outpatient clinic approach of patients during a lifelong GFD. Amongst the many guidelines for celiac follow-up, there is a lack of clarity regarding “What, who, and when.” We do follow-up with 700 patients at our out-clinic. In the past, we saw the majority of patients on a regular annual face-to-face follow-up. Now we control (if necessary by telephone and laboratory controls in their local cities) and make appointments “at request”. We have the impression that the adherence to a gluten-free diet improves by having a regular follow up, even by telephone, within the setting of a dedicated celiac clinic. The question is if with the adherence to a GFD, quality of life and the avoidance of complications is indeed improved. In the past, one of the key factors relating to the adherence to a GFD was supposed to be the quality of the dietician. Of course, GE-clinics do have dietetic experience, but the majority of patients nowadays also have excellent access to the internet and thereby to websites advocating and explaining GFD; this is an advantage and a risk/ pitfall at the same time, as the internet is spoiled with erroneous information, confusing the necessarily strict follow-up of the diet. The majority of patients manage their diets without any problems as gluten free products are widely available. The diet is difficult to follow for non-native speakers, immigrants, illiterates, the elderly, and patients on a low budget. World Digestive Health Day WDHD May 29, 2016 WGO Handbook on DIET AND THE GUT 33
WGO Handbook on Diet and the Gut_2016_Final
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