Q. Your radio show on celiac disease inspired me to drop gluten-containing grains at the age of 38, and I never felt better. Like so many people I had fallen through the diagnostic cracks.
I can trace many symptoms back all the way to my childhood but none of my doctors ever diagnosed what was wrong. I only wish I found out sooner.
I had one close call when I got severe diarrhea, cramps, and gas after eating pizza, but the doctor dismissed it as being an intestinal virus, so did no tests. Is there an easy test for gluten sensitive people? I would prefer not to have any probes in my digestive tract.
A. The expert you heard, Peter Green, MD, is director of the Celiac Disease Center at Columbia University. He told us that over 90 percent of people with celiac disease go undiagnosed. Symptoms often include digestive distress (diarrhea, cramps, gas and floating poop). People with undiagnosed celiac disease may also experience anemia, fatigue, headaches, joint pain or neuropathy. Blood tests that can help with the diagnosis include EMA, tTG and AGA. There is more information at PeoplesPharmacy.com.
Getting the diagnosis often takes a long time. Although doctors recommend testing before adopting a gluten-free diet (because the tests are much less accurate after the patient has been avoiding gluten for several weeks), some of our visitors have done as you did and tried out the diet to see how it makes them feel:
“Last year my brother was diagnosed with celiac disease and I began eliminating all the gluten products I had been eating. Since then I am feeling so much better plus my unexplained headaches are practically a thing of the past. Because of them, I had 2 very unnecessary tests, a spinal tap and a brain scan. Gluten intolerance was never mentioned by any doctor even though I told them I had lactose intolerance for years. My fibromyalgia has also lessened since being gluten free.”
Although the blood tests can be helpful, they are not fool-proof. Another visitor offered this story:
“Are there people out there who have had diagnosis problems?
“My antibodies were positive; my symptoms were textbook and the endoscopy made the gastroenterologist believe that I have celiac–‘the appearance of the small intestine is consistent with celiac.’ But the lab pathology was negative!
“I am suffering from arthritis and other issues that I believe are diet related. Any thoughts?”
With so many other signs pointing toward celiac disease, the pathology lab might have made an error. The doctor should be asked what other conditions might result in the same signs and symptoms, so they can be investigated further.