By Roy Benaroch, MD
A few weeks ago, I wrote two posts here about abdominal pain in children. The first post was about the initial steps parents should take to help their child feel better. The next post, about a handful of the most common causes of belly aches, drew spirited comments from people upset that I hadn’t mentioned gluten-related illness.
The commenters were right: gluten can cause a variety of problems in some people, including abdominal pain. It’s common enough that it should have been included in the original post. Let’s set the record straight about gluten and gluten-related illnesses.
Gluten itself is a mix of proteins found mainly in wheat, but also in barley and rye grains. It’s been known for many years that in some people, eating gluten can trigger an inflammatory condition of the gut called “Celiac Disease” or “Celiac Sprue.” When I was in training, Celiac Disease was thought to be quite uncommon. It was thought to cause things like abdominal pain, diarrhea, and poor growth in children, and could be diagnosed only with a biopsy.
In the last few decades, there’s been an explosion of knowledge about both Celiac Disease and other gluten-related problems. Blood tests have been developed and refined to the point that they can reliably diagnose Celiac Disease. There’s also been a recognition of many other symptoms outside of the gut with Celiac Disease, including neuropsychiatric symptoms and skin problems.
There are also people who develop symptoms from gluten exposure who do not have Celiac Disease—their blood tests and biopsies may be normal, but symptoms still occur that improve with a gluten-restricted diet. Some of these people have gluten allergy, which causes hives and GI symptoms, and some people have “Gluten Sensitivity”, which is defined as symptoms that occur with gluten exposure, disappear with gluten avoidance, and don’t consistently cause any abnormal tests or biopsies. Though the preferred term in the science literature for this is Gluten Sensitivity, the term “Gluten Syndrome” is sometimes used to mean what seems to be the same thing. Celiac Disease probably has an incidence of about 1 in 100 people. It’s difficult to know how common Celiac Sensitivity is in children or adults, in part because the symptoms can be broad and ill-defined, and there is (as yet) no reliable objective test for it. Hopefully better research will help clarify this soon.
So what should parents do if they think that their children may be having symptoms from gluten exposure?
Talk to their pediatrician or pediatric GI specialist. Good, state-of-the-art blood tests can reliably show if Celiac Disease is present—but beware that some centers still rely on older types of tests that give many false results. Sometimes a biopsy will be needed to know for sure. In proven Celiac Disease, it is very important to avoid all gluten exposure.
Even if your child doesn’t have Celiac Disease, gluten sensitivity may be present, and it can contribute to a variety of symptoms. Despite the promises from many web sites, there is currently no reliable test to rule gluten sensitivity in or out. For now, the best way to know is to eliminate all gluten-containing foods from the diet, and see what happens. If symptoms improve, re-introduce gluten to see if symptoms get worse again. Try to keep an objective record of whether gluten restriction really makes a difference. It may be hard to tell, and may require several periods on and off gluten. To really know, you may have to ask teachers or other people (who don’t know whether your child is taking gluten that week) to provide independent judgments of symptoms. Keep in mind that gluten isn’t the only cause of belly pain, and sometimes more than one thing can be going on at the same time.
Gluten-related illness has become somewhat of a boogeyman—on some web sites, literally any health problem is being blamed on gluten protein. There’s a bit of a “bandwagon” effect, and many sites are selling expensive tests and expensive foods to replace gluten in the diet. Don’t fall for the fears that everyone is sensitive to gluten. At the same time, it is certainly true that gluten can cause genuine disease in some people, be it Celiac Disease, gluten allergy, or gluten sensitivity. Work with your child’s doctor to help determine if gluten could really be the cause of health problems for your family.