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Just How Common is Celiac
Disease and Gluten Intolerance, Anyway?
Synopsis:
·
Celiac Disease was once assumed to be rare.[1][2]
· 21st Century studies show the combined rates of full-blown and silent Celiac Disease may exceed 1% in Western countries and around the world. [3][4][5][6][7]
· The rate of genes for wheat allergies is approximately 42% in the United States.[8]
· Gluten sensitivity may be a factor in at least 77% of all cases of autoimmune disease.[9]
· The combined rates of delayed allergies to wheat gliadin ranging from very mild to very severe may be 29% in the United States.[10]
“A generation ago,
physicians were taught that [Celiac] disease was so rare that a practitioner
might go a lifetime without seeing a case.”[11] Yet, without the internet, telephones, or
even much paper, second century Roman and Greek physicians saw the condition often
enough to write about it and provide us with its name
(“Κθιλιακ” in ancient Greek).[12] More recently, a few curious
endocrinologists with lucky patients wondered why Celiac Disease was so common
with Diabetes. Those few psychologists who could recognize
Celiac Disease thought it seemed common in cases of psychological
problems. Some rheumatologists were
curious why Celiac Disease seemed so common with Rheumatoid Arthritis.
“RARE” Celiac Disease is common in cases of several common illnesses!?!? What gives? If you look at studies of Celiac Disease over recent years, researchers keep pushing the numbers up as we learn more about the condition. How has a “rare” disease become something that that might affect as many as 1 in 4 Americans at some point in their lives? The short answer is that the disease is not becoming more frequent, but gluten sensitivity was there under our noses all along and medicine is just now learning how to really detect it.
The first modern studies of Celiac Disease were hampered by assumptions that the condition was rare and the fact that it was difficult to diagnose. If Celiac Disease is believed to be rare as well as a big chore to diagnose, it will be rarely considered for diagnosis. But this sets up a negative cycle: if it is rarely considered it will be rarely diagnosed; if it is rarely diagnosed it will be believed to be rare; if it is believed to be rare it will be rarely considered.
20th century studies of the frequency of
Celiac Disease were flawed since they were based on measuring how frequently
the condition was diagnosed, rather than on how frequently it appeared in
random tests.
In the last 2 decades of the 20th century, Europeans ran studies where random populations were thoroughly screened for coincidence of both the antibodies and the particular intestinal injuries associated with Celiac Disease. These studies indicated that the rates for this rather narrow diagnosis were between 1 in 100 and 1 in 500 in Europe. Yet, at that point, American doctors still held on to the idea that Celiac Disease was rare in the United States, no matter how common it is in Europe. “This is not logical. If CD is a genetic disorder with a high prevalence in the population of Europe, and the ancestry of the majority of people in North America is European, shouldn’t the prevalence be about the same?”[13]
“In 1993, researchers at Children's Hospital in Buffalo published a study estimating celiac disease's prevalence to be 1.3 cases per 10,000 children. Mayo Clinic researchers the next year measured a rate of 1.1 cases per 5,000 people in the Minnesota population the clinic serves.”[14] But such studies only measured how often very overt Celiac Disease was diagnosed, not how often Celiac Disease actually occurred.[15]
It wasn’t until 2003 that a large study led by the University of Maryland School of Medicine tested thousands of Americans for previously undiagnosed Celiac Disease.[16] As this study was reported in The Guardian, “Among [children] under 16, one in 167 had CD, while the rate among the adults was even higher - one in 111. If those proportions are true for the American population in general, this means that 1.8m adults and 300,000 children have undiagnosed CD - people who, sooner or later, are going to develop vague symptoms of feeling generally unwell, for which they will be offered various drugs that are unlikely to make much difference. Ultimately, they are at higher risk of a range of chronic diseases.” [17]
The overall rate of Celiac Disease in the United States is generally reported today at 1 in 133, based on the 2003 Maryland study. But that rate applies only if you and all of your relatives are healthy! If you or your family has chronic health problems, your odds are much higher! But, the odds of being correctly diagnosed with Celiac Disease in the United States in 2003 and for some years to come are worse than 1 in 1000.
The 2003 Maryland study may be getting close. Three independent studies found rates of biopsy proven Celiac Disease in young children to be at least 1% in Finland[18], Italy[19], and Denver, Colorado, USA[20]. Adult and childhood cases of Celiac Disease have been reported as high as 1.2% in New Zealand.[21] The true prevalence of the classic disease (where the intestine can be proven to be damaged) in different populations may be at least 1 of 100, particularly in European descendants[22], and possibly in North African and Arab descendants as well.
But, in all of the above studies, the definition of Celiac Disease requires that the small intestine be noticeably injured for a diagnosis of Celiac Disease.
Most 20th century studies of Celiac Disease state that people that have anti-bodies to wheat protein (gliadin) but have no injury to their small intestine do not have Celiac Disease. Do such people not have a problem? Most people with the beginnings of Celiac Disease injuries to their small intestines have no related antibodies in their blood.[23][24] Are these people not sick? More people have great improvement in neurological, skin, digestion, and other health problems by using the gluten free diet than can be accounted for by the classic definition of Celiac Disease.
The gluten free diet is known to
help people who are not technically diagnosed with Celiac Disease!?! What
gives?
Two things have to give. First, it must be realized that not everyone with allergic sensitivity to wheat has an obvious injury in the small intestine. Some people are going to get other autoimmune diseases and other illnesses from eating wheat without first developing classic Celiac Disease. Second, it must be realized the blood may not be the best place to search for anti-bodies to wheat protein if you want to prevent full-blown Celiac Disease or many other problems.
Dr. Kenneth Fine developed a test program based on a the idea that the highest concentrations of gliadin anti-bodies should be found where the body had the greatest exposure to gliadin, that is, inside the intestines. Rather than testing in the blood where “only” 11% of Americans have anti-gliadin antibodies (AGA), he tests the stool where he has learned that actually 29% of Americans have anti-gliadin antibodies.[25] This means that three decades of research missed most of the cases of gluten sensitivity in their screenings! This also means more than 1 in 4 Americans have some delayed allergic ration to wheat, barley, and rye! Yes, a large portion of those people will have only mild reactions for most of their lives, but this still suggests that tens of millions of Americas will slowly develop many unnecessary chronic illnesses over the years and will consume expensive medical treatments and large quantities of immunosuppressant drugs unless they consider removing the allergen from their diet.
If you or relatives have chronic or nagging symptoms, and no cause for them except "genetics" or "irritable bowel", or you are told “it’s just stress”, get your stools tested or try a two to three week gluten-free holiday, or both. If you can, find any doctor or friend to support you and not try to tell you “its just your imagination”. Study up – the more you know about the Gluten Free Diet before you start, the better your chances are of having a good result.
Here is a place to get tested: http://www.enterolab.com/
See also Tips, Pointers, and Pitfalls for the Gluten Free Diet.
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