Celiac disease is a medically diagnosed condition of an intolerance to gluten in the diet. Gluten is the protein component of wheat, rye, barley and oats. In people with celiac disease, after consuming gluten, the small intestinal lining (villi) becomes inflamed and the normal appearance changes so that it has a flattened appearance. A strict gluten-free diet can reverse these abnormalities, and is the only recognized treatment for celiac disease.
It is becoming increasingly evident that there is indeed a broad spectrum of presentations of celiac disease. Increasing numbers of adults are being diagnosed, whereas years ago it was considered a disease that was only diagnosed in children. Celiac disease can present at any age and the variability and often vagueness of symptoms can present a diagnostic challenge to many medical practitioners. Presentation can include: Gastrointestinal symptoms such as:
Alternatively, it may present with no gastrointestinal symptoms at all. Other symptoms can include:
The gold standard for diagnosis is a small bowel biopsy (the doctors will look for histological evidence of villous atrophy +/- infiltration of lymphocytes). This involves a special camera being passed down the esophagus, past the stomach, and into the first part of the small bowel. There, small samples of the lining of the small bowel are taken and investigated under the microscope. If the biopsy samples show flattening of the lining, then it confirms celiac disease.
There are some blood tests that can be performed to help screen for celiac disease in "at risk" populations (eg. family members, people with diabetes, etc). However these are generally not ideal for diagnosing celiac disease, as there can be false positives and false negatives. Blood tests including IgA tissue transglutaminase antibody tests and IgG Deamidated Gliadin Peptide can be ordered ("celiac serology"). Total IgA antibody test should also be performed to help validate tissue transglutaminase results. The small bowel biopsy is still considered the best method for diagnosing celiac disease.
There is no role for a trial of Gluten-Free diet without a preceeding biopsy.
It is important that people being checked for celiac disease need to still be eating gluten in their diet. If they cut gluten out of their diet (eg. trial a gluten free diet) before being properly diagnosed, they can reduce their chances of being diagnosed, as the villi/lining can start to repair. If the camera is then inserted to take the samples for biopsy, but the person has already started the diet, the biopsies might show to be normal - but this may not be an accurate result - it could be false as it may be repaired. Therefore, all people who look suspicious for celiac disease (eg. have symptoms, etc) should still be eating gluten whilst being investigated by their doctor(s).
Celiac disease is a life-long condition and there is no cure. The only treatment available is a diet free from all gluten. This prevents further damage to the villi and allows them to return to normal, so that nutrients can be properly absorbed. People need to follow the diet even if they are not unwell with symptoms. It must be strict and life long - people cannot take a break every now and then and have a bowl of regular pasta, or a slice of regular bread.
If left untreated, people with celiac disease can be at an increased risk of bowel cancer, osteoporosis, infertility, miscarriages and chronic ill health. The risk of all of these returns to normal on a gluten free diet.
Once the diagnosis of celiac disease has been made, the following tests are recommended if not already completed: full blood examination, iron studies, folate, vitamin B12, zinc, vitamin D levels and bone mineral density. They can also have lactose intolerance, fructose malabsorption, problems with their thyroid gland (underactive, overactive), diabetes, etc. These should all be checked in people with celiac disease.
Ongoing monitoring is important. People's villi usually grow back and return to normal, but time for this to occur can range from months to years. People need to remain on their diet for life - even if the villi grow back. In this sense, people are only treated, they are not cured. The diet is for life (until a cure is found!! - and the doctors are working on it!) A gluten-free diet for celiac disease prevents further damage to the intestinal lining, allowing villi to heal so that nutrients from food can be properly absorbed. The gluten-free diet is a life-long diet, and strict dietary compliance is essential, even in the absence of symptoms. A gluten free diet involves a lot more than just avoiding regular bread and wheat-based pasta. It is very involved. Despite this, there are plenty of foods you can enjoy! As the diet must be strict and life-long, but to also to help ensure you are enjoying your diet safely, it is recommended you see a dietitian with experience in celiac disease.
All people diagnosed with celiac disease are encouraged to join the Celiac Society (www.celiac.ca).
The gluten-free diet can be challenging and difficult, especially for the first few months following diagnosis, but it progressively becomes easier with familiarity with the diet and the foods available grows over time. There are many great tastes, gluten free, and the number of foods is increasing every day.