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cyclinglady

High Incidence of celiac disease in Long Term Study

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This video was presented by the Anerican GI Association.   Interesting in that they identified 3% the population as having celiac disease in their study of 30,000 adolescents.  Higher than previously thought.  

 

 

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Interesting. Not surprising to me that they found a higher percentage than they thouught. I think that percentage would be even higher if they tested older folks in their research.

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30 minutes ago, ravenwoodglass said:

Interesting. Not surprising to me that they found a higher percentage than they thouught. I think that percentage would be even higher if they tested older folks in their research.

Exactly. Especially since only about half were symptomatic. If you have no symptoms you aren't going to ask for a celiac panel. It's hard enough when you have lots of symptoms to get hate right tests run!

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48 minutes ago, Victoria1234 said:

Exactly. Especially since only about half were symptomatic. If you have no symptoms you aren't going to ask for a celiac panel. It's hard enough when you have lots of symptoms to get hate right tests run!

Or may have thought they were asymptomatic. That's why for years I have been in favor of screening routinely and IMHO it should be the first thing checked for in folks with stuff like fibro, migraines, IBS, anxiety and depression, GERD, arthritis, MS, acne- well the list could go on but those were just a few of my 'diagnoses' that all resolved one I was diagnosed celiac.

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The prevelance rates have always been based on random screenings of the population. Pick 1000 people, and 1% will wave celiac disease.  Of those with celiac, 50-80% won't know they have it. This presentation points to a huge increase in population based data.  I believe a recent study in Italy pointed to the same thing. The rate of celiac disease is increasing in the population. 

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3 hours ago, ravenwoodglass said:

Or may have thought they were asymptomatic.

Seriously! I had things wrong that corrected that I didn't know weren't NORMAL, lol.

IBS for sure should always get a celiac screen. I don't know what's wrong with doctors that they rely on that so often, other than they only picked being a doctor because they wanted big bucks, not because they wanted to help people.

3 hours ago, Feeneyja said:

The rate of celiac disease is increasing in the population. 

Is this because of awareness? Or something else?

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The number of folks walking around who don't know they have celiac is going down (from 80% to about 50%). That is due to testing and awareness. The overall rate within the population is independent of rate of diagnosis. The population rate says that in any random sampling, you will find x number with the disease.  So something is increasing the rate in the population.  Remember, 40% of the population has the genetics for celiac disease, but only a certain percentage of those develop the disease.  What are those triggers?

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19 hours ago, Feeneyja said:

The number of folks walking around who don't know they have celiac is going down (from 80% to about 50%). That is due to testing and awareness. The overall rate within the population is independent of rate of diagnosis. The population rate says that in any random sampling, you will find x number with the disease.  So something is increasing the rate in the population.  Remember, 40% of the population has the genetics for celiac disease, but only a certain percentage of those develop the disease.  What are those triggers?

The trigger for celiac is thought to be a stressor. An illness, pregnacy, trauma of either mental or physical origin or even a good stressor like a marriage etc. 

I don't know why that is but that seems to have been the case in my family. Myself-symptoms appeared after I was impaled at age 4, One child of mine had meningitis at 1 month and within a year went from the 65 percentile to the -10, another who spent more time with me, seemed to be triggered in adolesence by my severe illness. I was greeted one morning by her in tears as I exited the bathroom after another miserable night and she told me the family would understand if I committed suicide. 

I think the increase we are seeing isn't always an increase in the condition itself. I think it is because now we are better at looking for celiac and have better testing for it than we had even 20 years ago.

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https://www.sciencenews.org/article/common-virus-may-be-celiac-disease-culprit

Common virus may be celiac disease culprit

Viral interaction with gluten may send wrong signal to immune system, mouse study finds

By
2:03pm, April 6, 2017

Excerpt

"

A common and usually harmless virus may trigger celiac disease. Infection with the suspected culprit, a reovirus, could cause the immune system to react to gluten as if it was a dangerous pathogen instead of a harmless food protein, an international team of researchers reports April 7 in Science.

In a study in mice, the researchers found that the reovirus, T1L, tricks the immune system into mounting an attack against innocent food molecules. The virus first blocks the immune system’s regulatory response that usually gives non-native substances, like food proteins, the OK, Terence Dermody, a virologist at the University of Pittsburgh, and colleagues found. Then the virus prompts a harmful inflammatory response.

"

 

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The incidence is actually increasing, as frozen blood samples from WW2 show lower rates of celiac disease when retested: https://www.sciencedaily.com/releases/2009/07/090701082911.htm ]

It is assumed by most scientists that the hygiene hypothesis plays some role in the increased rates of autoimmune diseases and allergenic diseases in the current population. An interesting example of this is that in an area of Finland bordering on Russia (very high living standard), the rates of celiac disease are much higher than just across the border (lower living standards). The populations are essentially the same except for sanitation. Link to that study here: https://www.ncbi.nlm.nih.gov/pubmed/18382888

It seems that though there is a weak correlation with amount of gluten ingested and development of celiac disease on an individual basis, this is unlikely to be the cause from a population perspective as the amount of gluten ingested by the average person has not changed in the last hundred years or so (when rates were lower). This is despite popular health-blogger-guru-whatever conjecture to the contrary - we actually used to eat way more wheat (https://www.ers.usda.gov/topics/crops/wheat/wheats-role-in-the-us-diet/). The whole GMO-pesticide-paranoia thing seems pretty bunk as well: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573730/.

It seems that because the genetics for celiac disease are very much localized to regions with heavy historical consumption of wheat (middle east, north Africa, Europe), that there is/was some advantage to this genotype [http://www.sciencedirect.com/science/article/pii/S1590865814006008. and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4146836/ . It is postulated that this might be similar to sickle cell disease/sickle cell trait in malaria regions - having the gene is good and improves survival, at the high cost of some people developing the disease and dying/having very maladaptive traits. So for most of history, very few people with the advantageous celiac disease gene developed the disease, but now something is going on (hygiene hypothesis?) and that is no longer true in many populations.  Unlike sickle cell trait, we don't know what the advantage to having the celiac disease genes are - but presumably there must be one for ~30% of Europeans to have it.

Edited by apprehensiveengineer
added links to studies

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This is all so interesting! I  have thought the incidence must be far higher than 1% for a long time -' we' seem to be everywhere. Today the shop assistant serving me was a celiac. The landlady at my holiday cottage is a celiac.  Several of my friends are celiacs...  The vicar is a celiac.  My hairdresser is a celiac.  People keep telling me their sibling/dad etc is a celiac. 

These observations of mine is totally useless information - I realise - as it doesn't form part of a scientific study, but there are just too many celiacs in my life to think it possibly can be 1%!  

I wouldn't be at all surprise if it were anything up to 5%!  

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On 02/10/2017 at 10:55 PM, cristiana said:

This is all so interesting! I  have thought the incidence must be far higher than 1% for a long time -' we' seem to be everywhere. Today the shop assistant serving me was a celiac. The landlady at my holiday cottage is a celiac.  Several of my friends are celiacs...  The vicar is a celiac.  My hairdresser is a celiac.  People keep telling me their sibling/dad etc is a celiac. 

These observations of mine is totally useless information - I realise - as it doesn't form part of a scientific study, but there are just too many celiacs in my life to think it possibly can be 1%!  

I wouldn't be at all surprise if it were anything up to 5%!  

I think the prevalence much higher too. It seems like a lot of our friends are celiac and at least a few families we know have more than one affected member. My husband is celiac (diagnosed several decades ago) and I am pretty sure some of our kids are as well, even though the spouse doesn't want to admit it or have them screened because of our tight budget and the cost of gluten free food.

But if celiacs seem to be everywhere, why do celiac organizations say that 1% are affected and 80% of them are undiagnosed?

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On 4/27/2018 at 6:41 AM, HannahBick said:

I think the prevalence much higher too. It seems like a lot of our friends are celiac and at least a few families we know have more than one affected member. My husband is celiac (diagnosed several decades ago) and I am pretty sure some of our kids are as well, even though the spouse doesn't want to admit it or have them screened because of our tight budget and the cost of gluten free food.

But if celiacs seem to be everywhere, why do celiac organizations say that 1% are affected and 80% of them are undiagnosed?

A relative of mine is a GP and he recently told me that he has diagnosed so many celiacs recently that he is sure that it just has to be more than 1%.

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On 01/10/2017 at 2:05 AM, apprehensiveengineer said:

So for most of history, very few people with the advantageous celiac disease gene developed the disease, but now something is going on (hygiene hypothesis?) and that is no longer true in many populations.  Unlike sickle cell trait, we don't know what the advantage to having the celiac disease genes are - but presumably there must be one for ~30% of Europeans to have it.

Should we even refer to the HLA-DQ2 and HLA-DQ8 genes as 'celiac genes'? A lot of people seem to think that everyone who is HLA-DQ2/8 positive is potentially a case of celiac disease waiting to be triggered but I just don't think that's the case. Surely there must be other genes involved as well. I heard there are 30+ additional genes.

 

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I'm no geneticist and certainly no evolutionary biologist, but I think it is fair to describe the specific HLA DQ genes involved in celiac disease as "celiac genes." Unlike many other diseases (where genetics are more loosely associated with the disease), 100% of celiacs have those genes. Like with many genes, genotype does not equal phenotype. Many people carry the gene that causes red hair for example, but there are not many who actually have red hair. 

The interaction between these and other genes and the environment is unclear, but you need to have those building blocks to get the disease. This is why HLA testing can be used to rule out celiac disease in ambiguous cases or if a person is already on the GFD.

 

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