It is Time to Standardize the Vocabulary of Gluten Related Illness.

A Standardization of Vocabulary for Gluten Related Illness.
Confused about what to call an ailment related to gluten intolerance? Is the correct verbiage gluten sensitivity, gluten intolerance, celiac disease, or Coeliac Sprue? Do you have asymptomatic, nonclassical, or silent celiac disease? With undefined and varied terminology, everyone was becoming confused, even researchers and doctors. Luckily, a task force from seven countries meet in Oslo to standardize the definitions of celiac disease (CD) and related terms. They found that there was a lack of consensus among celiac professionals. “Clear definitions will allow more efficient and generalisable advances in CD research relating to aetiology, incidence, prevalence, complications and treatment of patients with CD and other gluten-related disorders,” so started researching the most accurate definitions.  The task forced published an article, “The Oslo definitions for coeliac disease and related terms.” It is freely accessible on the peer-reviewed journal, Gut. We share their definitions with you here in order to help clear up some lingering confusion.
Gluten: “Gluten is the commonly used term for the complex of water insoluble proteins from wheat, rye and barley that are harmful to patients with CD.”
Gluten intolerance: This term has been used to refer to CD and to indicate “that a patient experiences a clinical improvement after starting a GFD, even when they do not have CD.” The task force found the term to be non-specific and carried “inherent weaknesses and contradictions.” Therefore, they “recommend that the term gluten intolerance should not be used and that gluten-related disorders be used instead.”
Gluten-related disorders: “Gluten-related disorder is a term used to describe all conditions related to gluten.” It is recommended that this term be used as an umbrella to cover all conditions related to gluten, including “disorders such as gluten ataxia, DH, non-coeliac gluten sensitivity (NCGS) and CD.”
Gluten sensitivity: The task force found that some papers used gluten sensitivity as a CD synonym, other times it was used as an umbrella term for conditions related to gluten ingestion. To overcome this large discrepancy or meaning and confusion, they recommend using non-celiac gluten sensitivity (NCGS) be used instead.
Non-celiac gluten sensitivity: “The term NCGS relates to one or more of a variety of immunological, morphological or symptomatic manifestations that are precipitated by the ingestion of gluten in people in whom CD has been excluded.”
Asymptomatic CD: “Asymptomatic CD is not accompanied by symptoms even in response to direct questioning at initial diagnosis.”
Those with asymptomatic CD do not show symptoms associated with CD. They are most commonly diagnosed through screening programs or case-finding strategies. Many experiences a “decreased quality of life.”
Typical CD: Not recommended. What was previously perceived as typical and most common has changed.
Atypical CD: “Atypical CD can only be used in reference to typical CD... We argue that the term atypical CD should not be used. Some patients previously described as having atypical CD may fulfil the requirements for non-classical CD (see below).”
Classical CD: Classical CD presents with signs and symptoms of malabsorption. Diarrhoea, steatorrhoea, weight loss or growth failure is required."
Non-classical CD: “Non-classical CD presents without signs and symptoms of malabsorption.” A patient with non-classical CD does not suffer from malabsorption but may have constipation or abdominal pain.
Silent CD: “Silent CD is equivalent to asymptomatic CD. We discourage the use of the term silent CD.”
Subclinical CD: “Subclinical CD is below the threshold of clinical detection.”
The taskforce found that “what is ‘subclinical’ has changed over time. To provide a stable definition, we specified subclinical CD to be a disease that is below the threshold of clinical detection without signs or symptoms sufficient to trigger CD testing in routine practice.”
Symptomatic CD: characterised by clinically evident gastrointestinal and/or extraintestinal symptoms attributable to gluten intake.
CD symptoms spread across a wide spectrum, from none (asymptomatic CD) to a wide and diverse variety of symptoms. With Symptomatic CD the symptoms can be gastrointestinal or extraintestinal symptoms. What has been called overt CD “should be considered part of symptomatic CD.”
Refractory CD: Refractory CD (RCD) consists of persistent or recurrent malabsorptive symptoms and signs with villous atrophy (VA) despite a strict gluten free diet for more than 12 months.”
Latent CD: This terminology is discouraged, because they found at “least five definitions of latent CD” that were all very different from each other. It is recommended to use potential CD instead.
Potential CD: occurs in “people with a normal small intestinal mucosa who are at increased risk of developing CD as indicated by positive CD serology.”
CD autoimmunity: increased TTG or EMA on at least two occasions when status of the biopsy is not known. If the biopsy is positive, then this is CD, if the biopsy is negative than this is potential CD.” To provide further clarification they recommend, “when TTG or EMA has only been tested on one occasion, it is preferable to refer to patients as TTG positive or EMA positive.”
Genetically at risk of CD: “Family members of patients with CD that test positive for HLA DQ2 and/or DQ8 are genetically at risk of CD.” It should be understood that the risk for CD varies between 2% to 20%, depending on the “degree of the relative with CD and the number of copies of HLA-DQ2 genes.”
More standardized definitions for gluten related ailments, such as Gluten ataxia and Dermatitis herpetiformis can be found at gut.bmj.com. Another excellent resource to further understand further these definitions is www.questdiagnostics.com.
Universal definitions of terminology for gluten related illness provide clarity and understanding. Three cheers for the Oslo Task force in helping us to overcome confusion and misunderstanding!
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