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Are Estimates of Celiac Disease Rates Too High?

A new review questions estimates of celiac disease rates. 01/25/2010 - A new systematic review by Italian researchers suggests that many studies showing rising or elevated rates of celiac disease are not backed up by clinical evidence, and are therefore suspect. The researchers say that rates of celiac disease are being over-estimated, mainly because tissue transglutaminase antibodies were the only diagnostic tool. As a result, many cases labeled as celiac disease in medical studies are not confirmed by biopsy.

By the 1990s, celiac disease, which had been considered a rare condition, showed a marked increase, according to medical literature. Recently, researchers have projected celiac disease rates as high as 1 out of 100 people in the Western world.

To better understand the true prevalence of celiac disease in the general population that drove the researchers conducted their systematic review of published papers.

The research team included Federico Biagi, Catherine Klersy, Davide Balduzzi, and Gino Roberto Corazza, affiliated with the Coeliac Centre/First Department of Internal Medicine, and the Biometry and Clinical Epidemiology at the Fondazione IRCCS Policlinico San Matteo at the University of Pavia, Italy.

They found that the overall prevalence of celiac disease in the general population appears to be around 1/160 people, but this varies widely according to the diagnostic criteria used in the original papers. Figures also vary by region and ethnicity, as has been well-established.

Once studies were adjusted to include only biopsy-proven cases, rates of celiac disease remained within the historical averages, and show no signs of sharp rise or increase over time.

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Their initial search of medical literature for papers in English on celiac disease epidemiology since 1990 yielded 519 papers. Once the team eliminated studies with small sample sizes, and studies set up in primary care or endoscopy units, they were left with 40 papers focusing on the prevalence of celiac disease in the general population, plus an additional paper published in the present issue.

The team realized that differences in study type, populations, diagnostic criteria, and sample sizes made a proper meta-analysis impossible. However, they divided and regrouped the papers according to their various characteristics and then classified them based on the diagnostic criteria used in the original papers.

They also determined whether there were any significant differences in rates when different types of populations, sample sizes, years of publications, geographic regions, and diagnostic criteria were assessed.

The team was surprised to find that just four histologically confirmed studies suggesting a prevalence of celiac disease higher than 1/100.  On the other hand, seven biopsy-based papers suggested a prevalence lower than 1/400.

Prevalence obtained with tissue transglutaminase antibodies only was markedly higher than that obtained through a histological diagnosis, while post-hoc comparisons showed that the prevalence obtained with TTA was significantly higher than that obtained using histology or EMA.

From these results, the team concludes that the prevalence of celiac disease in the general population has been over-estimated, mainly due to tissue transglutaminase antibodies being used as the only diagnostic tool.

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4 Responses:

Kit Kellison
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said this on
02 Feb 2011 12:28:19 PM PDT
Dr. Fasano can be credited for the current gold-standard of celiac disease diagnosis confirmation using endoscopy. Now that he's backing off that, saying that sera confirmation appears to be enough...where does that leave this estimation?

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said this on
18 Aug 2011 3:39:13 PM PDT
I was told that the only true exact diagnosis was biopsy. Serology in my case every time did not show celiac disease, however biopsy with a second opinion did, on the other hand a second biopsy showed leukocytic colitis and then my doctor told me I only had IBS. So what is the real truth in this matter?

a j ponder
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said this on
10 Apr 2012 4:36:06 AM PDT
This is a rubbish study - the biopsy has repeatedly been shown to be a crap tool to assess the severity of coeliac disease - and bunching a handful of studies together proves absolutely nothing when populations have such markedly different rates of coeliac disease (as was actually stated in the article). And this makes complete sense when you look at the genetic markers which vary considerably from population to population. On top of which doctors are stupid - they treat their patients like idiots - without even realising that they're ruining their own tests by not clearly ensuring the patient is ingesting significant amounts of gluten in the lead up to the test. On top of which what person in their right mind would let a doctor biopsy them after they've had a blood test that's 99- 100 percent specific. Yes, the blood test is a terrible screening test - but it is because it misses about 20% of full blown coeliacs - not because it is over-diagnosing the condition. So Viki ignore your blood test - you have celiac - because of this high false negative rate a positive biopsy trumps a negative blood test every time - in the same way that a positive blood test should trump a negative biopsy - because even good doctors can miss the specific patch that shows coeliac damage - and bad doctors and inexperienced doctors have a success rate that is astoundingly low.

So the whole "Gold standard" thing is a load of croc designed to lower rates of coeliac - not only does it increase the number of people opting out of testing but there's also a reasonable chance of a false negative further artificially reducing the "coeliac" population. To get a real handle on all this we need to roll on AGA testing as the traditional concept of "Coeliac" is being proven to be more and more a construct of the belief that the condition of coeliac is rare - instead of the product of scientific evidence.

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said this on
14 Jul 2015 9:18:48 AM PDT
A j, you sound like a cranky bitter person, upset with your diagnosis and hoping the rest of the world is just as screwed as you are. A high Ttg is not specific to celiac and can be indicative of other autoimmune disorders. Why would someone with celiac show no immune response in their blood? Why, unless the celiac is very recently activated, would someone with the disease show no sign of damaged villi? There is no big conspiracy theory here! Why the hell would doctors want to "artificially lower" celiac rates?? You need to accept the fact that doctors aren't all out to get us, and that if someone says they have celiac and their doctor says they don't, they have every right to go to another doctor or cut gluten anyway. Ever heard of gluten sensitivity? Just because gluten makes someone feel bad does not mean they have celiac disease! Accept your diagnosis and stop acting like the world is against you. An increased number of gluten free products on the shelves and increased volume of research popping up looking for cures and treatments shows that people are taking this disease seriously, and no conspiracy is at play.

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glutenfreegirlfriend, I hope you are still following this thread. The vomiting bile and unintended weight loss can be a sign of bile reflux. Here is a NYtimes article on it. here is thread about it. Getting completely over bile reflux can be difficult. I hope he finds something that works for him. ***this is not medical advice. good luck on your continued journey. posterboy,

Nope. I got the flu and a cold within a two month span at the end of winter. However, I was battle a tooth infection during that same time period.

Hey Palmtrees450, You are not alone. I am going through the exact same thing right now. I thought it was gone but unfortunately I ate something else that has triggered it again. After reading another article on here I am starting to think it is rice...yet one more thing to eliminate from my diet, have already given up dairy and corn, now rice. I have super high anxiety. Doesn't matter who it is or what is said I am over emotional and really struggle in day to day functions even down to just folding a basket of laundry. I do have Xanax but that doesn't even help anymore. I have actually stopped taking it because of that. Only thing that helps is time, rest and drink plenty of water. The rest helps me more because then I get to be still and not think about anything. Hard to function when you have what feels like 15 people in your head at one time talking to you but it is only your thoughts rushing through your mind. I truly hope you feel better soon. Just be cautious out there. Even down to making sure your kitchen is clean and that all of your utensils, plates, pans, etc. are washed extremely well as sometimes I feel like this is where some of my problem comes in at but I haven't figured all of that out yet.

He may need to make a diet change for his diverticulitis. But you can't diagnose Celiac that way. If it were me, I would try another doctor. Is one doesn't sound very good.

This sucks, I want to add to what Knitty Kittty said. We are the Niacin warriors on this board. Here is a long but informative thread that talks about where others' have discussed this topic exhaustively. I also recommend this thread where Knitty Kitty talks about how Niacin helped her itching associated with a DH rash. I hope this is helpful. posterboy,