Diagnosing Non-Celiac Gluten Sensitivity
Spoiler alert: It's tricky
Do you ever get the feeling that the universe is trying to send you a message? Over the past month, I’ve had several conversations about non-celiac gluten sensitivity — in particular, about how it’s diagnosed. Many people wonder if they have it, but they’re not sure what it really means or how to get a diagnosis. If this is something that’s been on your mind — or you know someone who’s got questions about gluten intolerance — this post is for you!
What Is Gluten Intolerance, Anyway?
According to the Gluten Intolerance Group, “Gluten intolerance broadly includes any inability to tolerate gluten that covers both celiac disease and NCGS.” NCGS means non-celiac gluten sensitivity, and in the simplest terms, it means that you feel sick after eating gluten. Common symptoms can include fatigue, bloating, gassiness, abdominal pain, and headaches (here’s a full list of potential symptoms). Gluten intolerance is much more common than celiac disease: the Cleveland Clinic estimates that 6% of the population has it, versus 1% for celiac. Everyone agrees that gluten intolerance is on the rise. This piece by the UK magazine New Food does a great job of explaining why, but the tl;dr version is that environmental conditions are largely to blame (moreso than farming practices, contrary to much online opinion).
How Is NCGS Different From Celiac Disease?
The symptoms of both can appear similar, since many people with celiac disease feel sick after eating gluten as well. However, celiac is an autoimmune condition where the body actively tries to battle gluten, as if it were a virus. This is what causes inflammation in the body and damages the intestines, which in turn makes it tough for the body to absorb nutrients. Celiac disease is genetic, and a person who has it and eats gluten will have certain antibodies in their blood. Current research shows no genetic component for gluten intolerance. Basically, anyone can get it.
How Do You Test for NCGS?
Here’s the bad news: there’s no test for non-celiac gluten intolerance. With celiac disease, there are multiple ways of testing: doctors can check for antibodies in the blood stream, they can order a genetic panel, and if celiac is suspected, they will proceed with an endoscopy. Not everyone gets every test. For example, my celiac diagnosis started with a blood test for antibodies, and then I had an endoscopy; I never had any genetic testing. But with gluten intolerance, the process is very different, because there’s no test.
Then How Do you Diagnose NCGS If There’s No Test?
It’s a process. I’m going to let the experts at the Cleveland Clinic explain how to handle it. I would only add that it would be very helpful to have a doctor who has experience in this area. Many don’t!
Here’s what the Cleveland Clinic advises:
Your healthcare provider carefully reviews your symptoms and medical history. If they suspect you have a gluten intolerance, these are the next steps to confirm the diagnosis.
You eat a diet containing gluten for about six weeks. During this time, your healthcare provider performs blood tests and skin tests to rule out a wheat allergy or celiac disease.
If you don’t have a wheat allergy or celiac disease, your healthcare provider will ask you to exclude gluten from your diet for at least six weeks. Keep a thorough record of your symptoms during this time, noting which (if any) symptoms improve.
If your symptoms do improve while you’re on a gluten-free diet, you gradually reintroduce gluten back into your diet. If symptoms return, you likely have a gluten intolerance.
The bottom line: it’s a lengthy process that takes a lot of commitment, because you’ll need to make a lot of dietary changes to go gluten-free for six-plus weeks. Anyone with celiac can tell you that the learning curve is a steep process, and that we accidentally get glutened while learning. (For me, I thought I was doing so well, and then got tripped up by soy sauce!) It’s particularly tough for gluten-intolerant people, since getting accidentally glutened, but not realizing what happened, can mess with your record of symptoms.
Is There a Cure for NCGS?
No. Just like celiac disease, it’s currently a lifelong condition. But the good news is that it’s completely manageable by following a gluten-free diet!
If anyone reading this has been diagnosed with NCGS, I’d love you hear from you. How tough was it for you to get a diagnosis?
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