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Are You Gluten Free and Still Feeling Sick?
June 13, 2012
Are you a gluten-free celiac who still feels sick? A recently published study* conducted by researchers at St. Thomas’ Hospital in London looked into this very question. Over an 18-month period, they investigated 112 patients diagnosed with non-responsive celiac disease. They wanted to determine why these patients continued to have persistent symptoms even though they were on the gluten-free diet.
The patients were first seen in clinic where a thorough history and examination were performed with routine blood work, including tissue transglutaminase antibody measurement. They were also referred to a specialist gastroenterology dietician to try to identity any lapses in the diet and sources of hidden gluten ingestion. A repeat small intestinal biopsy was also performed and compared to biopsies from the referring hospital where possible. Colonoscopy, lactulose hydrogen breath testing, pancreolauryl testing and computed tomography scan of the abdomen were undertaken if the symptoms persisted.
Of the 112 patients in the study, 12 were found not to have celiac disease. Of the remaining 100 patients, 45 percent were not adequately adhering to a strict gluten-free diet, with 24 (53 percent) found to be inadvertently ingesting gluten and 21 (47 percent) admitting non-compliance. Microscopic colitis was diagnosed in 12 percent and small bowel bacterial overgrowth in 9 percent. Refractory celiac disease was diagnosed in 9 percent; 3 of these were diagnosed with intestinal lymphoma. After 2 years, 78 patients remained well, 8 had continuing symptoms and 4 had died.
The researchers concluded that there was a remedial cause for persistent symptoms in 90 percent of the individuals with non-responsive celiac disease. The leading cause was continued gluten ingestion.
Are you discouraged that your recovery is slower than you had hoped? According to “Celiac Disease, Myth-Busting Answers to Your Questions about Life Without Gluten,” by Rory Jones (Living Without, April/May 2012), there are several areas to explore:
- You may not be giving yourself enough time to heal. Typically, children show a fairly rapid and dramatic improvement on the diet. Adults may require much more time for the inflammatory process to subside.
- You may have an associated medical complication, such as bacterial overgrowth or pancreatic insufficiency, which requires treatment. Similarly, people who are severely malnourished when diagnosed may require extended nutritional therapy to regain their strength and health.
- You may have a concurrent food intolerance or medical condition. It’s not uncommon for those with celiac disease to have lactose intolerance, additional food sensitivities or other illnesses causing symptoms.
- You may have been misdiagnosed, in which case the gluten-free diet is not the answer to your problems.
As this study revealed, however, the most common reason for not getting better is that you may be inadvertently eating gluten.
All these areas underscore the importance of proper medical and dietary diagnosis and management when dealing with celiac disease and the gluten-free diet.
Are you gluten free and still feeling sick?