In honour of celiac disease awareness month, I am doing my part to educate and advocate for people who are diagnosed, misdiagnosed and undiagnosed with gluten related disorders. Numbers paint a vivid picture!
Share these statistics with others to raise awareness. Why do we need more awareness around celiac disease? Read on on to find out. You’ll be convinced.
Here are 10 surprising statistics you may not have known before about celiac disease!
1. 80-87% of the people with celiac disease are undiagnosed in North America.
Yes you read that right. When large studies are done and blood from the general population is screened, the majority of people that are screened positive were undiagnosed. Why? Because celiac disease is a clinical chameleon, meaning it changes it’s colour in every person, making it hard to spot.
Another reason is that many people will go off gluten before being screened for celiac disease and not get a proper diagnosis. This makes a big impact on following the diet as carefully as needed, receiving the proper medical management and mentally committing to a lifelong diet. (1,2)
2. Many people suffer on average of 10-12 years before being accurately diagnosed with celiac disease.
Many people echo this. They recall having stomach issues since childhood, sleeping 12+ hours a day as a teenager, having terrible skin rashes for years, experiencing heart breaking miscarriages…until finally receiving an answer and a diagnosis.
Hopefully with increased awareness this statistic will improve. Remember that celiac disease can develop at any time in life. Even if you screened negative in the past, it can happen later in life. (3)
3. 1:133 people have celiac disease in North America. Gluten sensitivity is thought to affect around 6% of people.
Celiac is twice as common as Crohn’s disease, ulcerative colitis and cystic fibrosis combined and affects one in 133 people in North America.
In the United States that is around 2-3 million people. In Canada that is around 200,000-300,000 people. (3,4)
4. 87% of newly diagnosed celiacs are deficient in at least one or more vitamins or minerals.
The most common deficiencies include vitamin A, B6, B12 (8-41% of people newly diagnosed), folic acid (18-24%), iron (28-50%), vitamin D (20-66%) and/or zinc (54-67%). It’s important to work with your doctor and dietitian to correctly identify any deficiencies and work to restore them quickly. The area of the intestines that absorb most of these vitamin or minerals is damaged in active celiac disease and therefore ineffective at absorption. (5)
5. It takes 2 years, on average to heal the gut following a gluten-free diet.
The amount of time varies depending on how damaged the gut was before diagnosis, age (elderly heal slower), education level and sex (men tend to heal slower than women). (6)
6. Celiac disease is 4 times more prevalent than it was 50 years ago.
Awareness and improve testing methods definitely contribute to more people being diagnosed with celiac disease. Is it actually occurring more than in previous generations?
Yes, celiac disease occurs four times more than two generations ago.
A set of blood work collected from Air Force recruits in the early 1950s was analyzed for celiac specific antibodies. The results were compared to a similar group in the present day. This serves as evidence that there is an epidemic around gluten related disorders. A similar study confirmed this in Europe as well.
The hypothesized reasons? Researchers can only guess. But our immune systems are likely not responding well to very rapid changes in the our environmental around quantity, quality and processing of cereals, chemical exposure and changes in our bacteria in our guts. (7)
7. 32% of people have anemia and 46% have decreased iron stores at diagnosis.
In fact it is the second most common symptom leading to a diagnosis of celiac disease after diarrhea. In men especially, anemia is uncommon so it indicates something is wrong. Iron is only absorbed in the top part of the small intestine which is the first part to become damaged with active celiac disease. Damaged intestines do not absorb iron well, if at all. (5)
8. 80% of people diagnosed with celiac disease are normal or overweight.
The assumption that you must be underweight to have celiac disease is a dangerous myth. One study found only 17-22% were underweight. This myth can lead to a huge amount of people not being screened despite symptoms or other indicators. (5)
9. 87-90% of people on a gluten free do not eat enough fibre.
Gluten free food products tend to be low or free of any dietary fibre. Without putting some intention into your food choices, it’s easy to miss out on fibre. Why should you care? Because fibre is a really important food source for the bacteria in your gut. It feeds the health bacteria which in turn create compounds that soothe and pamper your gut.
Healthy gut, health body, healthy immune system. Fibre can help prevent other diseases especially those related to the gut, cancers included. (5)
10. 47% of people still have gut issues one year post diagnosis.
This is a huge stat. Despite carefully following a gluten free diet, around half the people in the study still experienced stomach pain and discomfort. For these people they need more support and the gluten free diet alone may not be enough to solve their gut health symptoms. This is where dietitians can really shine and help people. (8)
Talk to me if you would like to explore more about your gut health and symptoms. I can help eliminate persistent issues and help you be symptom free. Learn more here.
- Jamnik, J., Villa, C., R., Dhir, S., B., Jenkins, D., J., A., El-Sohemy, A. (2017). Prevalence of positive coeliac disease serology and HLA risk genotypes in a multiethnic population of adults in Canada: a cross-sectional study. BMJ Open; http://bmjopen.bmj.com/content/7/10/bmjopen-2017-017678
- Rubio-Tapia, A, Ludvignsson, J., F., Brantner, T., L., Murray, J., A., Everhart, J., E. (2012). The Prevalence of Celiac Disease in the United States. The American Journal of Gastroenterology. 107, 1538-1544.
- Fasano, A (2014). Gluten Freedom.
- Leonard, M., M., Sapone, A., Catassi, C., Fasano, F. (2017). Celiac Disease and Nonceliac Gluten Sensitivity:A Review. JAMA. 318(7):647-656.
- Wierdsma NJ et al. (2013). Vitamin and mineral deficiencies are highly prevalent in newly diagnosed celiac disease patients. Nutrients 5(10):3975-92.
- Freeman, H. J. (2017). Dietary compliance in celiac disease. World Journal of Gastroenterology 23(15), 2635-2639. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5403742/
- Rubio-Tapia, A., et al. (2009). Increased Prevalence and Mortality in Undiagnosed Celiac Disease. Gastroenterology. 137(1): 88-93.
- Sylvester, J.,A., Graff, L.,A., Rigaux, L,, Bernstein, C.,N., Leffler, D.,A, Kelly, C.,P., Walker, J.,R., Duerksen, D.,R.(2017). Symptoms of functional intestinal disorders are common in patients with celiac disease following transition to a gluten-free diet. Digestive Diseases and Sciences, 62(9): 2449-2454.