In matters of emerging conditions like non-celiac gluten sensitivity, it’s best to go directly to the physicians and scientists on the front lines of investigation.
During the May 2012 webcast “State of the Union: A Live Chat with Gluten-Related Disorders Experts,” doctors Stefano Guandalini and Alessio Fasano spoke openly about what we know and what we don’t know about non-celiac gluten sensitivity, including the process of diagnosis. Notably, Dr. Guandalini explained that a biological marker for non-celiac gluten sensitivity does not currently exist and also spoke about the importance of a patient’s medical history when considering this diagnosis.
You can also read a transcript of this discussion.
Currently, no recommended methods exist to test for non-celiac gluten sensitivity (also known as gluten intolerance). Some doctors offer saliva, blood, or stool testing. However, these tests have not been validated and are therefore not accepted.
In the Beyond Celiac webcast, Dr. Guandalini adds to the fact that there are no reliable tests at this time, stating:
“No antibodies in the blood are specific enough, or sensitive enough, for this condition. No antibodies in the stools can be utilized to diagnose or screen for this condition.”
Dr. Fasano also touched on this topic and stated that his team is currently conducting research to identify biomarkers that may help to test for and diagnose non-celiac gluten sensitivity, also known as gluten intolerance.
Non-celiac gluten sensitivity is diagnosed by the process of exclusion. Experts recommend that you first get tested for a wheat allergy and celiac disease. If both are negative, your doctor may recommend a gluten-elimination diet. If symptoms improve on a gluten-free diet, then you likely have non-celiac gluten sensitivity.
It is very important that a knowledgeable physician oversee this entire process, which can help to prevent patients from self-diagnosing themselves and reduce the likelihood of a placebo effect occurring during dietary intervention.
I’m already gluten-free, and I feel much better than I did when eating gluten. Can I assume that I have non-celiac gluten sensitivity?
You may have celiac disease and not non-celiac gluten sensitivity. However, because celiac disease is a lifelong condition requiring strict adherence to a gluten-free diet and proper management by a knowledgeable physician, an accurate diagnosis must be made. Additionally, if you have celiac disease, it is crucial to confirm the diagnosis, as your family members could be at risk for the disease and may not know it.
One option is to talk to your doctor about genetic testing for celiac disease. A negative gene test would rule out celiac disease, but a positive gene test may mean more testing is needed. Another option is to talk to your doctor about possibly going back on a gluten-containing diet for a period of time, known as a gluten challenge, to confirm whether or not you have celiac disease, a wheat allergy, or non-celiac gluten sensitivity.
Most importantly, you should never forget to talk to your doctor about your symptoms and health concerns before beginning treatment on your own. Starting a gluten-free diet before being correctly tested can complicate the diagnostic process. A knowledgeable healthcare provider can help navigate the testing for and diagnosis of a gluten-related disorder.
Are there any dangers to a false diagnosis of non-celiac gluten sensitivity?
The below response comes from Daniel Leffler, MD, MS, Director of Clinical Research, The Celiac Center at BIDMC, Director of Quality Assurance, Division of Gastroenterology, Beth Israel Deaconess Medical Center, following the December 2012 webinar, “You Ask, We Answer: 60 Minutes with Top Celiac Disease Researchers.”
Since the only treatment for non-celiac gluten sensitivity is a gluten-free diet, as long as you receive proper nutritional counseling and keep a healthy, balanced diet, there is no danger to this treatment. However, it is essential to recognize that many gastrointestinal diseases present with similar symptoms, so the real danger is that in assuming a person has non-celiac gluten sensitivity, they are not evaluated appropriately, and a more serious illness is missed and allowed to progress untreated.
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