For years doctors were taught in medical school that gluten sensitivity and its severest form, celiac disease, were rare, identified mainly in children who were unable to absorb food. In photographs, youngsters with celiac disease looked like starving children because in fact they were starving, for nutrients. Once the diagnosis had been made and they’d been taken off all gluten grains–wheat, barley, rye, oats, kamut, and triticale–they rapidly regained weight and lived normal lives.
Some years later, gluten sensitivity diseases were voted by internal medicine specialists like me as the diagnosis most likely to be missed in a chronically ill patient (the runner-up was Lyme disease). Physicians began to appreciate there were many more problems linked to gluten sensitivity than the characteristic intestinal malabsorption of celiac disease. These problems were called “extra-intestinal manifestations” and included skin rashes, joint pain, neurologic and psychiatric conditions, and symptoms like fatigue, anxiety, and headaches. In fact, an article in the New England Journal of Medicine listed 55 conditions that could be caused by a gluten-sensitive person regularly eating gluten.
At the time, gluten sensitivity and celiac disease were very difficult to diagnose. If you were smart enough to suspect celiac disease, you needed to have a gastroenterologist take a biopsy sample of the small intestine to confirm the diagnosis. Gluten damages the intestine in a very characteristic and easily recognizable pattern.
Now a newly published study in the Journal of the American Medical Association says it’s time for all of us to take gluten sensitivity and celiac disease very seriously, because people who are genetically predisposed to them run a significantly higher risk of early death from both heart disease and cancer.
What exactly happens in gluten sensitivity? When gluten grains were introduced as a food source sometime in the Middle Ages, for genetic reasons a large percentage of people could not safely digest them. By contrast, rice is a very safe grain and rice sensitivity is extremely rare.
If you’re sensitive to gluten, your immune system has created an antibody against the gluten molecule, and these antibodies circulate in your bloodstream, triggering widespread inflammation. Gluten sensitivity is an autoimmune disorder–one in which the body mistakenly attacks its own tissues. Damage from the inflammation is responsible for all the symptoms, physical signs (such as rashes and intestinal damage), and health risks, including heart disease.
Here’s why it’s important to determine if you have a gluten sensitivity:
• If you have chronic symptoms of virtually any kind–digestive, musculoskeletal, psychiatric, neurological, anything chronic–if gluten sensitivity is contributing to them, you’ll never feel completely well until you eliminate gluten.
• Since we eat an astonishing amount of gluten grains (many people eat gluten-containing foods at every meal and for snacks), the total number of gluten-sensitive people, estimated to be in the millions, is rising dramatically and, here’s a kicker, 99% of them are undiagnosed.
• You’ll be in and out of the doctor’s office frequently with vague symptoms and you’ll hear your doctor say she can’t find anything wrong with you, that your tests are normal. This is because gluten sensitivity testing is simply not done routinely, though it should be.
• You won’t live as long.
Although there are blood tests now available with tongue twisting names (anti-gliadin antibodies, anti-endomysial antibodies, anti-tissue transglutaminase antibodies) that render the intestinal biopsy largely unnecessary, remember that you can be mildly gluten-sensitive and still test negative for gluten.
The best way to screen yourself for gluten sensitivity is via elimination-reintroduction testing–eliminating all gluten and then reintroducing it. Not everyone needs to do this, but it’s currently calculated that one person in 100 has a gluten sensitivity. If you have any chronic symptom of any kind, especially one that seems to unpredictably wax and wane, it’s a good idea to self-test.
Self-testing for gluten sensitivity
Click here for a mind-boggling list of gluten-containing foods. For three weeks, don’t eat any of them, not a bite, nada. If you are gluten-sensitive, it’s likely that after three weeks you will feel better than you have in years, with none of your nagging symptoms, mentally clearer, and energetic. At the end of three weeks, start eating gluten-containing foods again. If your old symptoms return, that’s it. You’ve made your own diagnosis.
At this point, your health is in your hands. Going gluten-free is definitely challenging at first, but most people realize they feel so well they simply don’t want to go back to their old way of eating. There are some nice support websites, too, including Gluten-Free Girl and The Chef and Living Without , with lots of recipes to help you along the way.
Can you avoid the self-testing and go straight to a blood test? Sure. Just ask your doctor to test you for gluten sensitivity. If you’ve self-tested and believe you’re sensitive to gluten, should you confirm your diagnosis with blood tests? Probably. I generally lean toward the blood test confirmation because if your tests come back positive, you’ll know you should definitely stay off gluten–that the healthy feeling during those weeks of gluten elimination was not a fluke. You have gluten sensitivity and you are at risk for ultimately life-threatening illnesses if you don’t eliminate the stuff.
If your blood test is negative but you know you felt a lot better off gluten, despite the reassuring blood-test result you really should listen to the wisdom of your body. The longstanding symptoms you’d been experiencing were messages of distress from your body. By quitting gluten, you responded to the message and your body rewarded you with a new sense of well-being.
After hearing a message as loud as that, ignoring it by going back on gluten is like taking the phone off the hook when someone is calling to let you know your house is on fire.
David Edelberg, MD