Linda asks: “What do you think the “true” statistics are for celiac? I know in Canada they say 1 in 10.”
How common is celiac disease?
October 22, 2013 By
Thanks for the question, the answer is complex (as are most discussions concerning gluten!). I have just looked up my old “Nelson” textbook of pediatrics which was written in 1975, that’s nearly 40 years ago. There are just 2 pages devoted to celiac disease, with an estimate of celiac disease of occurring in 1-in-300 people in England and Ireland. However, we all know that it is much more common than that.
Because 40 years ago there were no blood test is to diagnose celiac disease, and it was thought to be a gastrointestinal disease, and I quote from the textbook “chronic diarrhea, irritability, vomiting and failure to grow and to gain weight of the most common symptoms.” We now know that tis statement is totally incorrect. This classic presentation of celiac disease is now unusual (but unfortunately, the medical profession is still looking for these thin, wasted and irritable children).
Many people already know about Fasano is paper showing that 1 in 133 people in the USA have celiac disease. However, it is like to be an underestimate. A study done 10 years ago in New Zealand found one in 80 people had celiac disease (http://journal.nzma.org.nz/journal/117-1189/772/content.pdf). Both of these studies relied on small bowel biopsy to make the diagnosis, with screening test using TTG or EMA to identify suspects. Other studies show a rapid increase in the incidence of celiac disease. The prevalence of Celiac Disease has increased five-fold overall since 1974. This increase was not due to increased sensitivity of testing, but rather due to an increasing number of subjects that lost the immunological tolerance to gluten in their adulthood (http://www.ncbi.nlm.nih.gov/pubmed/20868314)
It also turns out that the small bowel biopsy is not an exact test. It is not a sensitive technique to identify bowel damage. However, there is a paradox here. The condition of celiac disease is defined by abnormal bowel histology. Therefore, the definition and also the test for this disease are in turn linked to the endoscopy results – this severely limits the discussion.
The blood tests are now a much more sensitive indicator of subtle intestinal damage. Also, celiac disease is a progressive condition. For example, this means that someone tested negative10 years ago might be positive now. What we do know is that about a quarter of the population carries one of the genes for celiac disease (DQ2/DQ8). Also there are other genes that make gluten sensitivity more likely. I speculate that gluten-related disorders (http://www.glutenrelateddisorder.com) are likely to affect up to a 3rd of the population: that is 1-in-3. Time will tell if I’m right. Many people are now saying that no one should be eating wheat or gluten as it is harmful for everybody.
Gluten-related disorders is a term now used for all gluten illness, including celiac disease, and including “developing celiac disease”. This area is only now starting to be researched. It is becoming irrelevant what name you have been given for your gluten illness.
by Rodney Ford