However, many of those people tried a gluten-free diet anyway, and reported that they felt much better. Their symptoms — which included fatigue, gastrointestinal complaints and neurological issues — cleared when they ate gluten-free.
Many of these people felt they were sensitive or intolerant to gluten. However, they didn't meet the strict diagnostic criteria for celiac disease. Regardless, in some cases, their physicians agreed with their assessments and agreed they shouldn't be eating gluten. In other cases, they simply continued to avoid gluten without a physician's blessing.
Now, some researchers are saying that a condition they're calling "gluten sensitivity," "non-celiac gluten sensitivity (NCGS)," "gluten intolerance" or even "gluten allergy" does exist. However, the condition's existence hasn't yet been proven definitively, and as of yet there's no explanation for why it occurs and how it might be related to celiac disease. There's not even an accepted name for it — some people are using "gluten sensitivity" while others call it "gluten intolerance."
In addition, despite a few recent studies showing gluten sensitivity may exist, many physicians don't yet agree that it's a real medical condition, and there's no accepted medical test for it.
Is It Celiac Disease? Or Is It Something Else?
When you're diagnosed with celiac disease, it usually means you've met the strict medical criteria -- i.e., you have damage to your intestinal villi (known as villous atrophy) that was caused by an autoimmune reaction to gluten in your diet.
Celiac disease affects approximately one in every 133 people in the U.S., making it a relatively common condition. Yet most people who show symptoms of celiac disease don't have the condition.
Some of these patients cut out gluten anyway — either on the advice of their physicians or on their own — and many find relief from those symptoms on a gluten-free diet. They firmly believe they're gluten-sensitive, and in many cases their physicians agree.
Although it's far from proven that gluten sensitivity actually exists, some medical researchers are starting to agree with these patients — the researchers report that many patients who say they get symptoms from gluten ingestion are, in fact, reacting to the gluten in their diets. There are also physicians who have started to diagnose people with gluten sensitivity, despite the lack of medical consensus on the condition.
Still, multiple unanswered questions remain about gluten sensitivity, including how many people might be gluten-sensitive, what symptoms indicate the condition, how to test for it, what any potential complications might be, and whether lifetime adherence to a strict gluten-free diet is the only possible treatment.
More on distinguishing gluten sensitivity from celiac disease:
Gluten Sensitivity Symptoms Mirror Those Involved in Celiac Disease
Even though there's no medical consensus on diagnosing gluten sensitivity, some physicians are telling people that's what they have. And people who've gotten a diagnosis of gluten sensitivity have symptoms that look an awful lot like symptoms of celiac disease — in fact, it's impossible to differentiate between the two on the basis of symptoms alone.
Symptoms such as diarrhea, constipation, bloating and abdominal pain occur frequently in those who have been diagnosed with gluten sensitivity and in those who report effects but don't have a diagnosis. Fatigue, joint pain, headaches and brain fog also are common.
However, it's not clear whether these symptoms indicate damage to your body's organs or whether they just indicate you've eaten something that doesn't agree with you. Unlike diagnosed celiacs, those who may be gluten-sensitive don't experience damage to their intestinal villi. Some researchers say people who are gluten-sensitive actually can experience damage to other organs and systems, especially their neurological systems, but this hasn't been proven.
More on the signs associated with gluten sensitivity:
Testing Options for Gluten Sensitivity Remain Unproven
Since many researchers do not agree that gluten sensitivity exists, there's no proven test to diagnose the condition. So what can you do to test for it if you think this might be your problem?
First, you and your physician should rule out celiac disease, which most likely will mean screening for the condition using the standard celiac blood test panel. It may also involve testing you for the celiac disease genes that are involved in most cases of celiac disease.
If your celiac blood tests come back negative, it's likely you don't have celiac (although false negatives do occur in some cases). In that case, you have a few options for gluten sensitivity testing, although none of those options have yet been validated by medical research.
For example, some physicians will use positive results on certain blood tests — tests that look directly for gluten antibodies in your blood — to diagnose gluten sensitivity. A few others will diagnose on the basis of dietary response — in other words, if you eliminate gluten and feel better, you're gluten-sensitive.
You also have the option of pursuing direct-to-consumer gluten sensitivity testing through EnteroLab — just be aware that the testing methodology used by this lab hasn't been proven or accepted by most physicians.
More on testing for gluten sensitivity: