Incidence

[Joyous]

I've read different things, and I'm curious about the incidence of Celiac Disease and gluten intolerance in the US. Which statistics are the most likely to be accurate?

[happygirl]

The latest and most accurate results came out a few year ago from Dr. Alessio Fasano's Celiac Disease Center at the University of Maryland. They reported that 1 in 133 Americans have Celiac.

According to their webpage: Spearheaded the largest epidemiology study ever performed in the US, resulting in more accurate prevalence data: instead of only 1 out 10,000, we now know the prevalence is 1 out of 133. Open Original Shared Link

From www.celiac.com: https://www.celiac.com/articles/647/1/Preva...-133/Page1.html

Prevalence of Celiac Disease in the United States is Found to be 1 in 133

Celiac.com 2/13/2003 - According to a recently published large-scale multi-year and multi-center study, 1 in 133, or a total of 2,131,019 Americans have celiac disease. Alessio Fasano, MD, et. al., and colleagues screened 13,145 subjects using serum antigliadin antibodies and anti

[Joyous]

The latest and most accurate results came out a few year ago from Dr. Alessio Fasano's Celiac Disease Center at the University of Maryland. They reported that 1 in 133 Americans have Celiac.

According to their webpage: Spearheaded the largest epidemiology study ever performed in the US, resulting in more accurate prevalence data: instead of only 1 out 10,000, we now know the prevalence is 1 out of 133. Open Original Shared Link

From www.celiac.com: https://www.celiac.com/articles/647/1/Preva...-133/Page1.html

Prevalence of Celiac Disease in the United States is Found to be 1 in 133

Celiac.com 2/13/2003 - According to a recently published large-scale multi-year and multi-center study, 1 in 133, or a total of 2,131,019 Americans have celiac disease. Alessio Fasano, MD, et. al., and colleagues screened 13,145 subjects using serum antigliadin antibodies and anti

[happygirl]

The problem with non-Celiac gluten intolerance is that it not as easily identified as Celiac is. Celiac is well-defined (while it may be restrictive, we do have a definition of it) but gluten intolerance isn't. Does that include a gluten allergy? Or an intolerance of IgG or IgA? Or what if you are negative on all tests but you react to gluten and don't know why? What defines a reaction?

Yes, there are more than just 1 in 133 that have a gluten problem. Its hard to say....some doctors say its rare, other doctors think almost everyone has a gluten problem.

The EMA test is pretty specific/sensitive for testing for Celiac.

Here's the full article: Open Original Shared Link

from the article: DIAGNOSTIC CRITERIA

The criteria for the diagnosis of celiac disease were either EMA-positive serologic findings with an intestinal biopsy consistent with celiac disease or EMA-positive serologic findings with HLA haplotypes compatible with celiac disease when a biopsy was not performed. Endoscopic biopsy of the intestine was recommended and performed if possible for all individuals who were either EMA positive or were AGA IgG positive and IgA deficient.

[Sailing Girl]

So you had to have either:

-- a positive blood test with a positive biopsy, or

-- a positive blood test with certified American Celiac genes (DQ2 or DQ8).

Those who tested negative on the blood test but had completely flattened villi were not counted.

Those who tested positive on the blood test but didn't have "official" Celiac genes (those recognized by American MDs) were not counted.

Those who didn't have enough damage either in their intestines or elsewhere (yet!) to test positive on the blood test were not counted.

How many people does that fail to count? How many people on this board wouldn't have made the cut? Neither my daughter nor I would have made it into the 1 of 133 -- yet gluten is poison to us.

I'm sorry -- I don't think 1 in 133 comes even close to describing the extent of this condition.

[Joyous]

wow

[Guest CD_Surviver]

what i have read about the stitistic is that 3% of all americans have celiac and only 3% of that 3% have been diagnosed!

Lauren

[happygirl]

Less than 1% (1 in 133) have Celiac, and 97% of that percentage don't know they have it. And this only counts "traditional" Celiac.

[hathor]

There are some study results of gluten sensitivity among different populations here:

Open Original Shared Link

I'm not sure adding it all up what the overall percentage would be. From somewhere I have the figure of 35% in my mind, but I don't know if that was derived from this work or something else.

A doctor in New Zealand reports a gluten sensitivity rate (I don't know how he determines it) there of 10%. I don't know why it would be that different from ours.

I think definitions and diagnostic criteria must come into play when it comes to statistics. And when folks don't agree on those, you aren't going to have agreement on the incidence stats either.