The blood tests for celiac are not the final say on whether you should be on a gluten-free diet or not. It is a fact that these tests can produce false negatives — meaning that you could have celiac disease, or at least a gluten intolerance, even if the blood test says you don’t. However, I still believe that if you are considering starting a gluten-free diet , you should go ahead and get the blood test for celiac disease before starting the diet (because a gluten-free diet can affect the test results).
Why do I recommend this knowing that the tests are not accurate? Because, if the test is positive for celiac… done. You have it. No more wondering if you are gluten-intolerant. No more questioning the diet and having gluten once in a while because you don’t know for sure. No more trying to explain to your family and friends why you are on this strange, self-imposed (in their eyes) diet. And don’t forget that celiac disease is genetic — so if you have it, it is important information that your relatives need to know. If you have celiac according to mainstream medicine, you can start your gluten-free diet for life, and move on.
Now, what if it is negative? I have always explained to people that someone might test negative on the celiac disease blood test because there hasn’t been enough damage yet to produce enough antibodies in the blood to register positive on the test. If this theory is true, then damage continues as long as the person is eating gluten — for many years, perhaps — until there finally is enough damage to produce positive results on the test. By then, a person could have suffered ill health of the stomach, brain, skin, joints, etc., or even have developed another autoimmune disease (diabetes, arthritis, or cancer for example).
Celiac disease can be “turned on” (symptoms or intestinal damage starts to show) at any age. I always wonder how many years it has been in the making in each person, damaging little by little. I had symptoms as a child (asthma, vitiligo), and then more symptoms that “turned on” in my early 20s (stomach aches, declining vision, anemia, leg cramps), until finally I was diagnosed at age 32. Who knows if I would have tested positive as a child, or even in my 20s.
Unfortunately, too many people, especially children, are being turned away from a gluten-free diet as a cure for a range of health problems because of these negative test results (and doctors’ reluctance to “impose” a gluten-free diet on someone without proof of celiac disease). The wonderful website Celiac.com recently published an article by Dr. Rodney Ford, a gastroenterologist who runs the Children’s Gastroenterology and Allergy Clinic in New Zealand. It is entitled “How Early Can Celiac Disease Be Diagnosed?” — I recommending reading it. He says that people can react to gluten long before the gut becomes obviously damaged by gluten (but he says that certain blood tests are good predictors of celiac disease).
And PLEASE read the comments under Dr. Ford’s article from readers themselves — they serve as evidence that the celiac blood tests are not the end of the line!