Is Celiac Disease Common?

One of the comments I frequently hear is that celiac disease is rare. If you go on the website of the Celiac Disease Foundation, you’ll find that 1 in 133 people are afflicted. That turns out to be about 0.7% of the population or about 2.2 million Americans.

If your doctor isn't quite as informed on this issue as she is on other issues, then she may cite this "official number"(also cited by the National Institutes of Health). But I want to tell you that this number is very, very wrong. It's a very old number based on old criteria and an old understanding of celiac disease. (OK- actually not that old. The data was published in a 2003 article in the Archives of Internal Medicine. Nonetheless... a lot has been learned in that past 6 years so here's an update on the numbers).

“Thanks to greater awareness of the disease and the availability of improved diagnostic tools… the prevalence of celiac disease in Western countries has been increasing steadily, and it is now recognized as a common disorder, even in adults. International Journal of Immunopathology and Pharmacology 2009-Jan-Mar;22(1):1-7

A 2008 study out of the University of Chicago showed 4 types of celiac disease.
1. Typical: with gastrointestinal (GI) signs and symptoms
2. Atypical (extraintestinal): with little or no GI symptoms
3. Silent: with destruction to the small intestine but absolutely no symptoms
4. Latent: where people have genes that set you up for celiac and even antibody production. But in this case, you may or may not have any symptoms but your small intestine is just fine! Molecular Diagnosis & Therapy:Volume 12(5)2008pp 289-298

The original number (1 in 133), really describes the 'typical' version of celiac described above. Over the past few years, we're starting to understand that the 'atypical' or 'silent' versions can take on many faces, some of which we wouldn't expect. Here's what it could look like.

1. "Osteoporosis... can be a sign of silent celiac disease ." Minerva Medica 2006 April; 97(2): 191-203

2. Type 1 diabetes and autoimmune thyroid disease. Advances in Pediatrics 2008; 55:349-65.

3. Infertility. "Each woman with unexplained infertility should be screened for celiac disease."
Minerva Medica 2007 Jun; 98(3):217-9

4. Irritable bowel syndrome and anemia. Gastroenterology 2005 Apr; 128 (4 suppl 1):S74-8

5. Skin problems. "Atopic dermatitis was about 3 times more frequent in patients with celiac disease..." The Journal of Allergy and Clinical Immunology 2004 Jun;113(6):1199-203.


... and these are just a handful of presentations you can find in the scientific literature. Admittedly, some of these findings are disputed in other papers but the important thing to note here is this:

40 million Americans have irritable bowel syndrome
30 million+ Americans have atopic dermatitis
28 million Americans have osteoporosis.
12 million Americans may have autoimmune thyroid conditions.
6 million American couples struggle with infertility.
2 million Americans have type 1 diabetes.

Even if only 10% (I pulled this number out of the air) of each disease group suffered from celiac disease, then the 1 in 133 number already gets blown out of the water. That alone is already 12 million people or 1 in 25.

Now- I'm not saying that the incidence of celiac disease is 1 in 25. I'm saying we need to rethink the numbers and that it is a lot more common than we think.