Are you troubled by recurrent, painful mouth sores?
While celiac disease is common, affecting approximately 1% of most populations, mouth ulcers, also called apthous ulcers, are even more common. When they erupt in painful groups inside the mouth, it is called apthous stomatitis.
Approximately 5% of people have recurrent apthous stomatitis (RAS), which means they have these mouth ulcers frequently. It would be expected that some people with celiac disease also have RAS.
Not only is this true, but it has also been estimated that as many as 5% of patients with celiac disease have recurrent apthous stomatitis as their only obvious symptom!
If you have RAS, you know it. You have what look like little ulcer craters in your mouth. They hurt. They are also very difficult to treat, and you may have had no success getting them under control. In that case, it is possible that your hard-to-treat mouth ulcers are due to celiac disease.
The relationship between celiac disease and apthous stomatitis is not completely clear, because different researchers have come to different conclusions. Some studies have found RAS and celiac disease to be related; others have not.
One recent study was done to try and clarify the relationship between RAS and CD. Over a two-year period, all patients with recurrent apthous stomatitis who came to the researchers doing the study were screened for celiac disease. These patients had no other underlying cause for their mouth ulcers, no history of other types of intestinal disease (like inflammatory bowel disease), and were not taking medicines that can cause mouth ulcers. 247 patients were willing to undergo screening for celiac disease after learning the reason for the study.
To begin with, standard blood tests were done to measure EMA (endomysial antibodies) and antibodies to tissue transglutaminase (a-tTG). If either of the two antibody tests was positive, the patient had an endoscopic examination of the duodenum, and four biopsy samples were taken. These were prepared and graded according to the commonly-used Marsh criteria. The diagnosis of celiac disease was made in patients with positive antibodies in addition to biopsy samples showing abnormalities consistent with celiac disease.
Complete blood panels including cell counts, tests of liver and kidney function, evaluation of the level of inflammation in the body, as well as levels of blood in the stool and iron in the body were measured in patients diagnosed with celiac disease.
Of the 247 patients in the study, 1 had both positive EMA and tTG tests, and 6 more were only anti- tTG positive. These 7 patients underwent biopsy. All 7 of the biopsies showed celiac disease. The percentage of patients with RAS who had celiac disease was 2.83, about 3 times the normal rate in the population of the area in which the study took place.
These 7 patients had RAS for an average of 4.5 years that had not been successfully treated. Two had mild anemia (low red blood cells). None of them had any other symptoms or signs of celiac disease.
Four out of the 7 went on a gluten-free diet. This led to significant improvement in the mouth ulcers within 2 to 6 months. Before the diet, these 4 patients had an average of approximately 6 episodes of ulcers a month. After six months on a gluten-free diet, they had approximately 1.5 episodes a month. The red blood cell counts in the two anemic patients also became normal.
While not every study on this subject has reached the same conclusion, it certainly seems reasonable to evaluate people who have RAS for celiac disease, at least with blood tests. Positive blood tests should lead to biopsy. Anyone with celiac disease needs to be on a gluten-free diet anyway. This lowers their risk of developing all the physical problems associated with untreated celiac disease, like osteoporosis (thin bones) and anemia. Lessening the mouth sores would be a welcome side benefit.
If you have frequent mouth ulcers along with any other reason to think you have celiac disease, such as abdominal symptoms, relatives with CD, or other problems linked to “silent CD” like iron deficiency anemia or osteoporosis, you should bring this information to the attention of your doctor and see what screening tests discover.