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. Last month NFCA did just that.
During the May 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.
For an explanation on where the field stands with how this newly coined condition is diagnosed, listen to Dr. Guandalini, beginning at minute marker 3:40. You can also read a transcript of this discussion, beginning on page 2.
After listening to Dr. Guandalini, read the FAQs below for a further discussion on testing and diagnosis of non-celiac gluten sensitivity.
How can I get tested for non-celiac gluten sensitivity?
Currently, there are no recommended methods to test for non-celiac gluten sensitivity. Some doctors offer saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted.
In NFCA’s webcast, Dr. Guandalini states:
“As a matter of fact, right now, they are to say that there is absolutely no biological readout that is no way can this diagnosis can be supported by any laboratory investigation. 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:
“…as Dr. Guandalini explained when the only way to make a diagnosis of gluten sensitivity is by exclusionary criteria since we do not have tests that will point in that direction. And that’s where our current efforts are all about. Now that we understand that it is a different entity we want to make sure that we can eventually identify the biomarkers for this condition, and we’re doing a double blind study to identify the biomarkers that will eventually fill the gap that Dr. Guandalini was alluding to.”
For a recap of Dr. Fasano’s discussion, begin listening at minute marker 16:54. You can also read a transcript of this discussion, beginning on page 5.
So, how do I get diagnosed?
Non-celiac gluten sensitivity is diagnosed by process of exclusion. Experts recommend that you first get tested for a wheat allergy and for celiac disease. If both of those are negative, then 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 omit patients self-diagnosing themselves and to 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 just assume that I have
non-celiac gluten sensitivity?
It is possible that you have celiac disease and not non-celiac gluten sensitivity. But because celiac disease is a lifelong condition requiring strict adherence to a gluten-free diet and proper management by a knowledgeable physician, it is important that an accurate diagnosis is made. Additionally, if you have celiac disease, it is important 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 that 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 in order to confirm whether or not you have celiac disease, a wheat allergy, or non-celiac gluten sensitivity.
Most importantly, you should always remember to talk to your doctor about your symptoms and health concerns before beginning treatment of any kind on your own. Starting a gluten-free diet before being properly tested can complicate the diagnostic process. A knowledgeable healthcare provider will be able to 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 NCGS 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 important to recognize that many gastrointestinal diseases present with similar symptoms, so the real danger is that in assuming a person has NCGS, they are not evaluated appropriately and a more serious illness is missed and allowed to progress untreated.