Celiac Support Association

Gluten-sensitivity and Current Definitions

Since its inception, CSA's major mission is to advocate the optimal health of the "patient" and their family living with a gluten-related disorders. Celiac Disease was the all inclusive term for those all living a gluten-free lifestyle until researchers began to define other gluten-related conditions.  Currently, the all inclusive term is GLUTEN-RELATED DISORDERS. 

Trying on the gluten-free lifestyle:

Generally, a gluten-free food plan follows a systematic diagnosis protocol. By skipping the physician and implementing a gluten-free lifestyle, other health conditions may be missed. Children who lack a true diagnosis may encounter problems receiving a suitable school lunch, 504 plans and other healthcare issues may be dismissed. In a divorce, one parent may use the lack of a true diagnosis as grounds for claiming child abuse by the other parent. Adults, trying and then adopting the gluten-free food plan, may encounter few obstacles until hospitalized or facing retirement living. What is the plan when food choices are made by others? As pharmaceuticals  become available, how will you qualify?  Proper diagnoistics are available at a reasonable cost and minimally intrusive.   

Gluten-sensitivity:

Gluten-sensitivity is a diagnosis of exclusion.  Rule out celiac disease, rule out wheat/gluten allergy followed by a period of dietary gluten exclusion, followed by a gluten challenge. A person with a positive response to gluten exclusion is given a diagnosis of non-celiac gluten sensitivity. 

The CSA approach for guiding people with this diagnosis is to review the diagnosis and request a second opinion. The questions are: 1. Was adequate gluten consumed prior to diagnostic tests? 2. Have tests results been reviewed by another physician? 3. Continue to work with the medical community for answers to optimize YOUR health. 4. Then, it is OK to try the gluten-free diet. 5. If the diet works, CSA is here to help.

If about 1% of the population has celiac disease, an estimated six times more people are in the ambiguous situation of negative or non-conclusive diagnostic test results. And most of the symptoms improve on a gluten-free lifestyle.* The gluten-sensitive person caught the attention of the research community when Swedish research indicated the gluten-sensitive have a greater risk of dying at an early age than the celiac counterpart.** The increased mortality issue was quickly followed by papers suggesting revisiting the strict requirements for diagnosing celiac disease.

Positive blood tests and/or biopsy followed by a positive response to a gluten-free diet are key to a diagnosis and treatment of dermatitis herpetiformis, celiac disease, gluten ataxia, or wheat/gluten allergy. Without clear-cut test results, a growing number of people affected by gluten-containing foods are diagnosed gluten-sensitive. Gluten-sensitivity is the current name, by consensus, to describe ALL other abnormal responses to gluten containing foods that are not celiac disease, gluten ataxia, dermatitis herpetiformis nor allergies. There are no universally accepted diagnostic tests for gluten-sensitivity. There is no universal treatment recommendation for gluten-sensitivity.

Definitions:

Celiac Disease : IgA immune mediated response (2006 Position Statement on the Diagnosis and Management of Celiac Disease: American Gastroenterology Association)

Dermatitis Herpetiformis: IgA immune mediated response (2006 Position Statement on the Diagnosis and Management of Celiac Disease: American Gastroenterology Association)

Gluten Ataxia: IgA immune mediated response ***

Wheat/Gluten Allergy: IgE immune response (Allergy NIH Guidelines for the Diagnosis and Management of Food Allergy

in the United States, May 2011)

Non-Celiac Gluten-Sensitive: immune and/or non-immune response,not one of the above *

Intolerance: an adverse health effect caused by foods that do not involve the immune system. (Allergy NIH Guidelines for the Diagnosis and Management of Food Allergy in the United States, May 2011) Gluten Intolerance does not exist. The Oslo Definitions discourage the use of the term.  The Oslo definitions for coeliac disease and related terms  Jonas F Ludvigsson, Daniel A Leffler,* Julio Bai, Federico Biagi, Alessio Fasano, Peter HR Green, Marios Hadjivassiliou, MD, Katri Kaukinen, Ciaran Kelly, Jonathan N Leonard, Knut E Lundin, Joseph A Murray, David S Sanders, Marjorie M Walker, Fabiana Zingone, and Carolina Ciacci. Gut. Jan 2013; 62(1): 43–52.

*The First Consensus Conference on Gluten Sensitivity, London February 2011 sponsored by Dr.Schär, The goal was to lay the foundation for diagnostic and treatment of gluten sensitivity.

** The Global burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality?, Byass, et al Plos One, 2011: Subclinical Celiac Disease and Gluten Sensitivity, Nejad, Gastroenterology and Hematology 2011, 4 (3); Tio M, et al, Meta-analysis: coeliac disease and the risk of all-cause mortality, any malignancy and lymphoid malignancy.

Ailment Pharmacol Ther. 2012 Jan 13. doi: 10.1111/j.1365-2036.2011.04972.x.

***Gluten ataxia. Hadjivassiliou M, et al. 2008;7(3):494-8.

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