Does Celiac Disease Affect More Than 1% of the Population?



Jaqui Karr, the best-selling author, speaker and corporate consultant, recently wrote a read-worthy article in Whole Foods Magazine, “The Celiac 1% Myth and Why the Real Numbers Matter.

Karr claims the celiac disease prevalence of 1% is a myth, that the real number is much higher. She says the one percent number is based on a 2003 study of .00004 of the United States population and Karr claims it’s time for an update.

According to Karr, the massive flaw is the testing itself. Current testing requires results of a biopsy of the small intestine that show total villous atrophy. If damage isn’t at the worst level, then the test result is “negative.”

We already know many factors can impact the blood tests, and if a person tests “negative” on the blood test the endoscopy with biopsy will not be pursued. The blood tests are not, after all, pass / fail. They simply measure the level of antibodies present. These levels can rise or fall depending on circumstances. We hear from patients that their doctors tested them years ago and told them they were negative, without ever testing again. The blood tests should be re-administered in three to six months if symptoms continue or worsen.

She goes on to say 35% of the United States population has the genes for celiac disease. She states that people are living on some level of a disease spectrum which is affecting them and impacting their lives. She calls them ticking time bombs waiting to go off and send them to the emergency room, which is what happened to her.

Karr adds that people with celiac disease have a 39% increased risk of death and non-celiac gluten sensitivity increases the risk of death by 3 to 4 time. We know from the study she cited that this increased mortality decreases in time following diagnosis and treatment with a gluten-free diet.

She continues by saying for every person successfully diagnosed with celiac disease, 8 are not. These people are suffering, misdiagnosed or prematurely dead.

Karr concludes by stating that the 1% prevalence was never really 1%, that we are seeing people damaged by gluten at 30 to 50 times more than realized. She says it is time to improve the tests, improve recognition and get the people who need help the help they need.

What do you think? Doe you agree with Karr that celiac disease affects more than 1% of the population?

About John Libonati

John Libonati


  1. John, Karr is right. Two studies showed that saliva testing was as good as blood testing. A high school student in Alaska saliva tested 100 people attending a science fair and 3 were positive several years ago. The 1/133 was based on a random testing of American Red Cross blood supply many years ago. Various anemias that celiacs have prevent their blood from being accepted for donation. Some like me never donated, because we almost fainted whenever blood was taken. Dr. Fine says 47% of Americans have either HLA-DQ2 or DQ8 on chromosome 6. But Dr. Fasano’s work shows that celiacs have another gene variant on chromosome 16 that causes celiacs to have 32 times the increase in intestinal permeability upon consuming wheat (a peptide of gliadin upregulates zonulin) that people with another version of the gene experience. Of course, there are non-celiacs that have that gene that causes leaky gut. The tTG antibody blood test is only accurate if you have total villous atrophy. Otherwise it gives a false negative 70% of the time. Not only that, hemolytic anemia causes false negatives. Hemolytic anemia is something that I had for many years, which is a symptom of SLE., something you have at least one gene for (DR3) if you have the riskiest celiac gene DQ2.5. There was a more recent blood testing study that showed 3% in the US have celiac, with 5 to 6% in some areas.

  2. We have used the Enterolab with great results! I am surprised you do not suggest their stool tests. It shows up earlier in the intestines.

    • John Libonati

      Hi Gayle! I just recommended Enterolab to a person last week. We decided to use peer reviewed research in the information we present on the website. It was our understanding that Dr. Fine never released his research to the public, which is understandable given the rampant intellectual theft in the medical industry. Personally, I think his stool tests are valid and we hear nothing but good things about it.

  3. I agree absolutely. There are so many people here in Germany who have Symptoms like Celiac People. But the doctors do not Test on Antibodys or do not know that they need to have a Biopsy even when there are no Antibodys.

    We are 14.000 Members in our german speaking Facebookgroup for Celiacs called “Zöliakie Austausch” (Celiac Exchange)

  4. Yes believe there are more than 1% of the population that have celiac disease. I was diagnosed 25 years after I had symptoms I was repeatedly told I had IBS without any testing. I moved to Fl and was sent to a GI and after hearing my family history he immediately sent for blood work which was positive then the positive EGD was done and I was therefore put on a GF diet which is not very effective My 5 year EGD showed no villi had regrown My advice to people who have the symptoms have the EGD

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