Canadian Celiac Association (CCA) Board Member Mark Johnson and Operations Manager Sue Newell represented the CCA at the 2015 International Celiac Disease Symposium (ICDS) held in Prague in June 2015. This report represents their learnings on Diagnosing Celiac Disease in Adults. Want to join the Canadian Celiac Association? Visit www.celiac.ca or email [email protected]
Diagnosing Celiac Disease in Adults
Celiac disease is chronic small intestinal immune-mediated enteropathy precipitated by exposure to gluten in genetically predisposed people. That’s according to Sweden’s Dr. Jonas Ludvigsson. Gluten is the most important protein fraction (80%) in wheat, rye and barley, and the average European consumes 10-20 grams of gluten per day. For celiacs, the toxic fractions are in both gliadins and glutenins. However, the gluten proteins in maize, rice, millet and sorghum are safe for celiac patients. Gluten is Latin for “glue” – and indeed, it holds things together.
The first cases of celiac disease were traced back to the second century in ancient Egypt or Greece. During World War II, the health of many children improved when their parents resorted to feeding them tulip flour instead of wheat flour. When wheat was reintroduced, the problems returned and were eventually traced to gluten. Celiac disease used to be considered a disease of children – and many medical professionals still believe this to be the case. However, the reality is that now, for every pediatric case of celiac, there are nine adult cases!
Experts at the ICDS remain concerned about the number of people who waste money and add problems to their health in the long term due to misinformation on the Internet. The president of the Austrian Coeliac Society argued that “food intolerance test kits” are flawed. Too often they indicate that they falsely indicate that people are sensitive to foods that they are not. Stool testing is not sanctioned as diagnostic nor are there any enzymes or OTC medicines that can make gluten safe for a celiac. The best course remains to continuing eating gluten if feasible and get A proper diagnosis so that ones health can be properly managed and a gluten-free diet for life is the best course of treatment.
The delay between the onset of symptoms and a celiac disease diagnosis ranges from eight to twelve years, depending on the study as well as gender (women tend to be diagnosed more quickly, and earlier in their lives). Undiagnosed celiac disease leads to reduced quality of life and consumes a lot of health care resources. Diagnostic delays contribute to reduced well-bing but and greater use of pharmaceuticals, according to one Finnish study. Compared to other gastrointestinal ailments, celiac patients suffer from a wider range of symptoms, complicating an accurate diagnosis.
The “gold standard” of celiac disease diagnosis continues to be a positive blood serology and biopsy demonstrating villous atrophy. However, recent research suggests that, while a tTG+/EMA+ serology is highly predictive of having celiac disease, tTG+/EMA- is likely to be associated with other diagnoses. This is one reason why the “full panel” of blood testing is better than picking just one test. Be careful with a “positive tTG” serology. A tTG level at least 10 times above that of normal is a good level to confirm celiac, especially in the case of children who may not be going to the biopsy stage. Just being “above normal” could be caused by any number of conditions and contribute to false positives. Physicians and patients should examine symptoms in depth. In children, a positive EMA should also be noted, as well as the presence of symptoms in order to make a positive diagnosis without aid of biopsy. Elevated blood serology and celiac symptoms are largely accepted as definitive of celiac disease in small children, for whom biopsies may be a challenge.
Symptoms suggestive of celiac disease can often be misinterpreted as those of other better-known conditions thereby confounding a proper diagnosis. Further, there are other conditions that can cause positive blood serology – for example, high levels of gluten-related antibodies have been found in those with schizophrenia. Crohn’s and soy sensitivities, among others, may cause with villous atrophy. Certain drugs can also lead to the intestinal damage that is similar to that seen in celiacs. Any number of ailments can cause the iron deficiency anemia that often accompanies celiac disease.
Infertility, pre-term birth, arthritis, and malignancy are some of the predominantly “atypical” symptoms adult celiac patients present with, with few or any “classical” gastrointestinal symptoms. Diagnosis can occur when donating blood (in some countries), during an unrelated gastroscopy, or by way of at-risk group targeted screenings. A researcher in Prague finds that up to 90% of diagnosed patients are asymptomatic, meaning screening is critical. There is no relation between the intensity of celiac symptoms and the severity of intestinal damage. While celiac disease used to be associated with images of frail, thin people, one Dutch researcher noted that, in his clinical practice, around 40% of newly diagnosed celiacs are actually obese. Several studies found that most celiac patients were of a normal weight, with around 40% being overweight/obese. Fewer people are found to be underweight at time of diagnosis.