What is Celiac and Non-Celiac Gluten Sensitivity?

Non-celiac gluten sensitivity (NCGS) is an often-misunderstood condition that can cause a wide range of symptoms and autoimmune issues such as joint pain and autoimmune arthritis. Many people confuse Celiac Disease (CD) with NCGS. It is important for individuals to understand NCGS and how it can be accurately tested in order to take the necessary steps toward diagnosis and appropriate treatment.

Non-celiac gluten sensitivity (NCGS) is not a disease, but a state of genetics. It is a condition where an individual experiences a reaction, either intestinal or non-intestinal to the ingestion of gluten, but does not have celiac disease (CD) or wheat allergy. About 6% of the population suffers from NCGS and about 1% from celiac disease. Everyone with CD is gluten-sensitive, but not everyone with gluten sensitivity has CD.

When gluten, a protein found in wheat, rye, barley, and other grains, is consumed by someone with NCGS, their immune system recognizes it as a foreign invader. Gluten is known to poke holes in the one-cell lining of the gut and it can result in a condition called leaky gut, where food particles leak into the blood’s circulatory system. This can also lead to the leakiness of other organs such as the brain or kidneys. The leakiness can trigger an inflammatory response and lead to symptoms of gluten sensitivity such as digestive upset, abdominal pain, skin rashes, headaches or migraines, joint pain, fatigue, and more. A person’s symptoms manifest in the organs with the body’s weakest links.

Over time, this inflammatory response can ultimately result in an autoimmune response and result in autoimmune disorders such as Rheumatoid Arthritis, Hashimoto’s Thyroiditis, and Ankylosing Spondylitis. Secondary effects of gluten sensitivity include systemic inflammation, organ damage, and nutritional deficiencies.

Currently, there is no definitive test to diagnose NCGS. It is usually identified after a person tests negative for celiac disease and wheat allergy, although many traditional providers are not trained to recognize or test for gluten sensitivity. The presence of NCGS should be explored after testing is negative for allergy or CD with further testing and/or dietary approaches, as failing to recognize and manage sensitivity could lead to chronic inflammation and the development of autoimmune disease. Medication to help resolve symptoms is only temporary, at best, and ultimately symptoms of NCGS will continue to worsen over continued exposure to gluten.

An elimination diet can help identify a gluten sensitivity issue. There are a number of ways to do an elimination diet, but at the very least, eliminating all sources of gluten from the diet for several weeks and then slowly reintroducing them while observing any changes in symptoms can help. Various blood tests may also be used to check for antibodies associated with NCGS or other food sensitivities, though these are not always accurate. Ultimately, it is important for individuals to work with a healthcare provider who can help them accurately diagnose NCGS and determine an appropriate course of treatment.

Testing for non-celiac gluten sensitivity can be complex and confusing. While intestinal biopsies are used as a gold standard for diagnosing CD along with antibody testing, the reality is that a single or few samples may miss the location of where the CD pathology may be found. Unfortunately, some doctors may not recognize that an individual has NCGS when the biopsy is negative and they may not recognize the need to have the individual eliminate gluten from their diet. If antibody tests are positive and the individual has symptoms, they may ultimately develop CD or another autoimmune condition if gluten is not eliminated from the diet permanently. In many cases, it can take 10-40 years to develop an autoimmune condition.

Biopsies are not used to diagnose NCGS. For NCGS, there are several types of tests available to help detect the presence of this condition, with each type having its own pros and cons. These include blood tests, saliva tests, and genetic tests.

Blood Tests: Blood tests are the most used method for testing for both CD and NCGS. They measure levels of antibodies in the blood that may indicate an intolerance to gluten or other related proteins. The advantage of using a blood test is that they are relatively easy to do. The Wheat ZoomerTM test aids in the specific recognition of antibodies to wheat peptides, both gluten, and non-gluten, along with antibodies that indicate the presence of intestinal permeability and celiac disease. There are a couple of issues with various blood tests. False-negative results can result if the person’s immune system is not strong enough to produce antibodies in response to gluten. Also, there are hundreds of types of gluten and there is no one test to test for antibodies to all forms of gluten.

Saliva Tests: Saliva tests can also be used to detect non-celiac gluten sensitivity. They measure levels of antibodies in the saliva that may indicate an intolerance to gluten or other related proteins. Saliva tests are less invasive than blood tests, but they can may not be as reliable.

Genetic Tests: Genetic tests are another type of test used to detect pre-disposition for both non-celiac gluten sensitivity and CD. This is not a test for diagnosis of disease. Genetic testing analyzes DNA sequences, specifically  HLA-DQ genes, in order to determine if a person has a genetic predisposition for developing the condition. There are genetic patterns for both CD and NCGS. For example, HLA DQ-2 and HLA DQ-8 are both linked to CD and NCGS where as HLA DQ 1 and HLA DQ-3 are linked to NCGS, alone. This means that gluten fits into an HLA-DQ receptor on the white cell, causing it to be recognized as foreign, leading to an immune reaction and inflammatory response.

The advantage of genetic testing is that it is highly accurate. Dr. Peter Osborne, the founder of the Gluten Free Society, identifies the issues with antibody testing and recommends that all people with an autoimmune disease be tested genetically for gluten sensitivity genes. Knowing you are gluten-sensitive and changing your diet is a key way to avoid developing symptoms and disease.

Individuals with NCGS should follow a gluten-free diet (GFD) to reduce or eliminate any reactions that may occur after consuming foods containing gluten. It can take days to weeks to begin to see improvement in symptoms and sometimes years to resolve symptoms. With proper identification and management, individuals can effectively manage their non-celiac gluten sensitivity and enjoy an improved quality of life. Clinical trials have demonstrated the effectiveness of dietary modifications in treating the symptoms associated with NCGS and CD. In some cases, an individual may need to be tested for other non-wheat gluten food sensitivities such as corn or rice.

When properly diagnosed and treated, non-celiac gluten sensitivity can be managed, and the risk of developing autoimmune arthritis or other autoimmune conditions can be reduced. For those that may be dealing with the symptoms associated with NCGS, it is important to understand how it works and get tested to ensure a proper diagnosis and optimal management plan. Learn more about gluten sensitivity.

References:

Cárdenas-Torres FI, Cabrera-Chávez F, Figueroa-Salcido OG, Ontiveros N. Non-Celiac Gluten Sensitivity: An Update. Medicina (Kaunas). 2021 May 24;57(6):526. doi: 10.3390/medicina57060526. PMID: 34073654; PMCID: PMC8224613.

Ierardi E, Losurdo G, Piscitelli D, Giorgio F, Amoruso A, Iannone A, Principi M, Di Leo A. Biological markers for non-celiac gluten sensitivity: a question awaiting for a convincing answer. Gastroenterol Hepatol Bed Bench. 2018 Summer;11(3):203-208. PMID: 30013743; PMCID: PMC6040034.

The Gluten Free Society, https://www.glutenfreesociety.org/