80-87% of the people with celiac disease are UNDIAGNOSED in North America.
Celiac disease affects 1:133 people in North America. However, the majority of people with celiac disease are UNDIAGNOSED. Read to the end to find out how you can screen yourself for celiac disease, even if your doctor refuses.
The reason for low diagnosis rates is complicated.
One of the biggest reasons for under-diagnosis is that celiac disease is a clinical chameleon. It changes it’s colour in every person, symptoms can be vague, unclear and look different from one person to the next. This makes it very hard to spot.
In one person, celiac disease may not present with any obvious symptoms other than stubborn anemia, general fatigue or migraines. In another person, celiac disease may show up as dramatic digestive or neurological symptoms like losing the ability to walk or maintain weight.
Another reason for under-diagnosis is lack of good medical support. Many people share the long journey they had receive an accurate diagnosis of celiac disease.
Many people suffer on average 10-12 years before being accurately diagnosed with celiac disease.
A decade is a long time to suffer with unexplained and untreated symptoms. As a result of lack of medical support and answers, many people take matters into their own hands.
Desperate for relief some people make the decision to go off gluten before being screened for celiac disease.
The issue with going off gluten before having a celiac screen, is that you need to be EATING GLUTEN for at least four weeks in order for the celiac screen to be ACCURATE.
Ideally, if you think that gluten is a problem for you, get screened for celiac disease with a blood test BEFORE starting a trial of eliminating gluten. A lot of people find it hard to return to eating gluten for screening if they experience symptom relief.
If needed, try to see a different doctor and bring validation from credible websites like your national celiac association. Check out the Canadian Celiac Association or the National Celiac Association for resources.
Definitive celiac diagnosis makes an impact on long term management
Having a definitive diagnosis for celiac disease makes a huge impact on long term management.
- Your doctor will need to provide follow-up care
- You need careful monitoring to ensure good intestinal healing
- Other tests are needed to assess overall health e.g. – nutrient deficiencies, bone density scans as needed
- You will have a medical reason to mentally commit to following the diet as carefully as needed
- Otherwise you may be tempted to “cheat” on the diet
- You may not take cross contamination seriously
- To have family members screened
- Celiac disease is GENETIC meaning the risk that a first degree family member also has it is around 10-15%.
Celiac disease can develop at any time in life
Celiac disease is a genetic disease. That means that you are either born with the specific genotype for it or you aren’t. Your genotype determines the potential to develop the disease. What determines if you “turn on” the gene and develop celiac disease comes down to environmental triggers like stress on the body, an illness or a trauma event.
Even if you screened negative for celiac disease in the past, it can still happen later in life.
You can now screen yourself for celiac disease
An exciting new company IMAWARE has just launched an AT HOME celiac test that is available for people living in the United States.
If your doctor refuses to test you for celiac disease and you question if you might have it, this test is for you.
Through this company you can screen yourself at home with a finger prick test and have the results back to you within 5 days. It’s easy, precise, validated and affordable. The results are very comprehensive and provide you with so much more than what a standard blood test through your doctor would show.
IMAWARE celiac screening program was designed and validated alongside world-renowned celiac disease researchers and medical doctors.
To learn more about this test and to take control of your health read more here.
To learn more about what celiac disease is, read more here.
Note: I am an affiliate for this company and I do receive a small commission an any sales through links on this page. This does not change my opinion of this product and you should purchase as per your own discretion.
- 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.