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Gluten sensitivity may now affect as many as 1 in 16 Americans

r
racer x Nov 26, 2011 02:16 PM

Based on comparisons of blood samples from the 1950s to the 1990s it seems that antibody markers of gluten sensitivity, and of celiac disease in particular, have become about 5 times more common in recent years.

It is estimated that about 1 of every 133 people has celiac disease, and of those with a relative who has celiac disease, the prevalence is even higher, as much as 1 in 22. Yet just 10 years ago or so, it was still being taught that the prevalence of celiac diasease was only about 1 in 10,000 in the US, much lower than was believed at that time to be the case in Europe.

So even if a lot of the recent awareness among the general public of gluten sensitivity has been driven by fad-chasers, there may actually be a significant increase in the number of people who would benefit for legitimate medical reasons from a gluten-free diet.

www.nytimes.com/2011/11/27/magazine/S...

  1. s
    sueatmo Nov 26, 2011 02:27 PM

    Interesting. But it may also be that gluten sensitivity is over diagnosed, much as low blood sugar was decades ago. Or it might be that gluten sensitivity was under diagnosed for decades.

    3 Replies
    1. re: sueatmo
      r
      racer x Nov 26, 2011 03:03 PM

      My thoughts as well. But if the study (or studies) comparing blood samples from different eras are valid, it's more than just a matter of changes in diagnostic practices.

      1. re: sueatmo
        Vetter Nov 26, 2011 11:32 PM

        It's not over diagnosed, I suspect. At least for celiac disease. The blood test is known for being unreliable (erring on the side of a negative) and the "gold standard" test is a gut biopsy, which a ton of people don't/won't/can't do. I think we're dealing with a majorly underdiagnosed phenomenon, and no wonder - the standard American diet is so chock full of wheat - our "normal" may very well be less healthy that we ought to be.

        1. re: Vetter
          paulj Nov 27, 2011 11:15 AM

          3 grains, rice, wheat, and corn dominate nearly all the diets in the world. America is far from unique in its use of wheat. USA per capita consumption of wheat is down from a high in the late 19th c Z(225lb/yr), though up a bit from the 1970s (110)
          http://www.ers.usda.gov/briefing/whea...

      2. s
        sandylc Nov 26, 2011 04:04 PM

        Are there degrees of sensitivity?

        6 Replies
        1. re: sandylc
          c
          carfreeinla Nov 26, 2011 04:30 PM

          Many. And many forms of issues with gluten. You can have allergies, intolerance and Celiac Disease ( and I am sure that I am leaving out some). People with all of the above have different reactions ( and some, no reaction!) to gluten- meaning that they can be asymptomatic. This is all important because issues with gluten are not one size fits all.

          1. re: carfreeinla
            s
            sandylc Nov 26, 2011 06:31 PM

            My mother has had some unusual food intolerances for most of her life. It is strictly gastrointestinal. People don't understand: "A little won't hurt you!" Only if you don't count the visit to the emergency room!!!!

            1. re: carfreeinla
              r
              racer x Nov 27, 2011 04:08 AM

              As Carfreeinla said, there is a wide spectrum of responses to gluten.
              There are even some patients who experience severe rashes (dermatitis herpetiformis) rather than (or in addition to) gastrointestinal symptoms and malnutrition.

              On the other hand, there is the suggestion that some people who don't have bona fide gluten intolerance may feel better on a gluten-restricted diet for reasons other than what they might have anticipated:

              "One thing to consider is that many people feel better on a gluten free diet because they are eating less food overall (due to fewer choices) and cutting out most sources of refined grains, both of which are a good idea even if you don't have gluten issues.

              Your 'sensitivity' to carbs may also relate to blood sugar fluctuations and insulin resistance, both of which can improve by reducing total and particularly refined grain intake."
              http://www.cnn.com/2011/HEALTH/expert...

              1. re: carfreeinla
                chefathome Dec 1, 2011 07:03 PM

                However, if you have celiac disease, as I do, there are no varying degrees. If you have celiac you have celiac.

                1. re: chefathome
                  r
                  racer x Dec 2, 2011 11:12 AM

                  Chefathome, on the contrary, the manifestations of celiac disease itself vary a fair amount.
                  http://www.cureceliacdisease.org/medi...

                  (If there were no variable degrees, wouldn't it be much easier for doctors to recognize the disease?)

                  1. re: racer x
                    chefathome Dec 2, 2011 02:58 PM

                    The villi blunting can vary and so can the symptoms (wildly!) but the only thing one can do is to strictly follow the gluten-free diet for life. Thta is what I meant. You cannot have celiac just a little bit - if you have it, you have it, unfortunately. Sorry if I was unclear. I know tons of people with celiac and their symptoms are all over the map so yes, the manifestation can be different, but the treat ment is the same.

            2. e
              escondido123 Nov 26, 2011 09:37 PM

              Over-diagnosing in MHO. If we all stopped eating anything that gave us gas, we have to stop eating lots of veggies and virtually all beans. True celiac disease, ok. but the rest has just gone over the top....my SILs find something new to be intolerant of every year or two so it's now to the point they have to allow something back into their diet that they used to be intolerant of or they'd have nothing to eat.

              3 Replies
              1. re: escondido123
                Vetter Nov 26, 2011 11:38 PM

                Celiac and gluten intolerance is not simply about avoiding gas. Your SILs do a disservice to the rest of us. If you saw a photo of me from when I ate wheat and then a photo now, I assure you, you'd be able to literally see the difference. I was malnourished, constantly rashy, had cracked skin around my nose and lips, had ridged/damaged fingernails, and was bloated in the face. But I looked well fed (ahem) and ate my whole grains like a good girl. I was dragged kicking and screaming to give up gluten. Please don't write off the very real numbers and prevalence of this very common disease because some ding dongs have co-opted it for a fad.

                1. re: Vetter
                  linguafood Nov 27, 2011 11:05 AM

                  "Ding dongs". I love that & use it all the time.

                  1. re: Vetter
                    e
                    escondido123 Nov 27, 2011 11:17 AM

                    Please do not distort what I wrote. I did not say celiac is simply about avoiding gas. I understand that it is a very serious disease, so serious that I would not take it upon myself to try and make a meal for someone with the disease--the consequences of failure are too great. But there are many people--you see them on CH, you certainly run into them in real life--who are obsessed with every bite they put in their mouth, whether it's calories, allergies, just don't like it, nutritionist told me to stop dairy, I think I have a problem with mold--that sharing a homemade meal with some folks has become a minefield. Ah for the days of just having to deal with vegetarians.

                2. n
                  NotJuliaChild Nov 26, 2011 09:54 PM

                  I've had brutal heartburn for years. Myriad tests, endoscopies, and prescriptions failed to alleviate my symptoms. Tired of feeling like a guinea pig for doctors, I thought I would give a gluten free diet a chance.

                  It took 3 days for me to be heartburn free.

                  From what I gather, I have what is known as "non-celiac gluten sensitivity".

                  I can eat wheat products. I just have to deal with REALLY bad heartburn.

                  Symptoms of gluten sensitivity manifest in a multitude of ways. The reaction is specific to the individual. This is what makes it hard to diagnose.

                  I don't know how or why I developed this. I'm just very, very glad I found something that works to alleviate the symptoms.

                  2 Replies
                  1. re: NotJuliaChild
                    g
                    givemecarbs Nov 27, 2011 12:59 AM

                    That is amazing NJC! Thanks for the comments. I've been trying to follow a mostly raw vegan diet to look and feel better and what I crave most is not the meat and dairy but the grains. To me the grains seem really addicting. Let food be your medicine!

                    1. re: NotJuliaChild
                      jenscats5 Nov 27, 2011 02:17 PM

                      RE: NotJC - THAT is exactly ME! Thank you for posting!! To eat anything wheat-related I have to take so many Pepcids/antacids I'm sure it does not do my body good....

                      Thank you for posting!

                    2. h
                      hsk Nov 26, 2011 10:20 PM

                      It does seem to be increasing, and I don't think it's just from greater awareness. This article has some interesting theories:

                      http://yourlife.usatoday.com/fitness-...

                      6 Replies
                      1. re: hsk
                        r
                        racer x Nov 27, 2011 05:31 AM

                        The investigators mentioned in that USAToday article are the same as were quoted in the NY Times Magazine linked to in the OP, and those investigators are referring to the same two studies.

                        From skimming one of those studies (the Mayo Clinic study) now I see several huge potential problems with the methods that were used (problems that the authors acknowledged in their discussion of their findings). The study looked for bloodstream antibodies which are markers for gluten intolerance/celiac disease. They compared the prevalence of those antibodies in blood samples that had been collected back in the 1940s and 1950s and stored to the prevalence in samples that were drawn in the 1990s, almost 50 years later. The samples were studied simultaneously, using the same modern methods of analysis. If the prevalence of gluten intolerance has remained stable over the decades, the percentage of blood samples with diagnostic antibody levels should also have remained essentially unchanged (or so the argument goes).

                        They found that the prevalence of diagnostic antibodies was 4 - 5 times higher among participants whose blood was sampled in the 1990s than was found among participants whose blood had been sampled in the 1940s and 1950s. Based on this finding, they concluded that the prevalence of gluten intolerance has been dramatically rising in the US.
                        http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704247/?tool=pubmed

                        Unfortunately, the populations that were being compared (circa 1950 vs a half-century later) were not comparable in other regards, so the difference in antibody rates could have been due to other factors that were not studied.

                        First, the participants in the 1950-era study were young, healthy individuals working on an Air Force base (average age only 20) while the 1990s group were much older (by an average age of two decades or more, in fact). If gluten intolerance increases with age, and there is evidence that it does to a certain point, the age difference alone might explain the discrepancy.

                        Second, as military men, the 1950s-era participants were drawn from across the US, while the 1990s participants were all locals living near the medical center, so if the rate of gluten intolerance happened to be higher in the population of people living near the medical center than throughout the rest of the country, comparing the two populations could also create an illusion of an increasing rate. (I suspect that young military workers also probably tend to be healthier than non-military workers -- a young person with bowel difficulties or symptoms of malnutrition would probably have been less likely to have gotten into the Air Force than someone who was pretty healthy, which would have tended to lower the likelihood of finding gluten intolerance antibodies in the military base group compared to the general population.)

                        Third, the proportion of African Americans appears to have been significantly lower in the group of participants from the 1990s than was the case 50 years earlier -- an important observation because gluten intolerance is known to be less common among non-Europeans than among Europeans and European Americans.

                        The second study I can't read because I don't have access to the journal; I can only see the abstract which is available online.
                        http://www.ncbi.nlm.nih.gov/pubmed/20...

                        In that study they looked for the diagnostic antibodies in blood that had been drawn in 1989 and compared the prevalence to that in blood that had been drawn from the same participants 15 years earlier. They found that the prevalence had doubled in those 15 years, suggesting that some individuals who had not had gluten intolerance when they had first given blood had developed it over time.

                        However, that finding doesn't necessarily mean that the prevalence of the disease more generally was rising during those 15 years -- it just seems to suggest instead that gluten intolerance may be acquired with age.

                        I'd also be interested to see the statistical analysis of the data in the second study -- the doubling they found might not have been statistically significant.
                        (They also said in the abstract that the prevalence of antibodies had risen about 5-fold in the US more generally over the 15 years but they didn't explain in the report abstract their justification for extrapolating numbers measured in a local Maryland population to the rest of the country.)

                        1. re: racer x
                          r
                          racer x Nov 27, 2011 05:49 AM

                          Still, even with the flaws of those two studies, it's possible that we may be experiencing a real increase in the prevalence of the conditions, not just an increase in awareness among doctors and a lowering of the threshold for making the diagnosis.

                          There is at least one other study (which I haven't read in depth), in which the prevalence of antibodies was compared in groups of blood drawn decades apart, in this case in Finland, with the finding that the prevalence had markedly risen over a 20-year period.
                          http://onlinelibrary.wiley.com/doi/10...

                          1. re: racer x
                            h
                            hsk Nov 27, 2011 06:56 AM

                            Actually this was the part from the USA Today article I found interesting. I know both articles quoted the same studies.

                            Awareness of celiac disease has grown in recent years, evidenced by the growing number of gluten-free foods on the market. However, medical experts don't believe that the increase in celiac disease incidence can be chalked up simply to folks becoming more aware of the chronic digestive disorder or to improvements in diagnostic techniques.
                            Rather, the most popular potential explanations for the increase in celiac disease rates involve improvements in sanitation and hygiene in civilization overall, said Fasano and Carol McCarthy Shilson, executive director of the University of Chicago Celiac Disease Center.
                            According to the "hygiene hypothesis," Shilson said, people in industrialized countries are more at risk for celiac disease because their bodies have not had to fight off as many diseases.
                            "We're just too clean a society, so our immune systems aren't as developed as they should be," she said.
                            Another version of the hypothesis holds that the cleanliness of industrialized society has caused a fundamental change in the composition of the digestive bacteria contained within the gut, Fasano said.
                            "It's because this increase occurs primarily in industrialized countries, where things are cleaner," Fasano said. "We abuse antibiotics, we wash our hands too often, we are vaccinated more often."
                            Other potential explanations for the rise in celiac disease rates, according to Fasano, include:
                            An increase in the amount of gluten found in grains. "We eat grains that are much more rich in glutens than they were 70 or 80 years ago," he said.
                            Children being exposed to gluten from an early age. "We know for sure if we introduce grains too early, people at risk for developing celiac disease are more likely to contract it," he said.
                            Too few women breast-feeding their children. "There are theories out there that say breast-feeding will protect you, or prevent celiac disease," Fasano said.
                            It's possible, experts say, that each of these theories is correct to a degree and that a combination of factors will ultimately be found to contribute to celiac disease. "It may well be in one person, one plays a stronger role than another," Fasano said.

                            1. re: hsk
                              s
                              sandylc Nov 27, 2011 12:34 PM

                              Thank you, hsk, for highlighting ideas which are not a popular but every bit as valid (maybe more so).

                              1. re: hsk
                                rockandroller1 Dec 2, 2011 11:17 AM

                                VERY good info hsk.

                            2. re: racer x
                              s
                              sandylc Nov 27, 2011 12:31 PM

                              Thank you racer x. I get so frustrated with "conclusions" from "medical" or "scientific" "studies" where they completely isolate the details that they have predetermined to be of interest, while disregarding about a million other factors which probably have an effect on the outcome. Please disregard my lack of technical language here; I think I made some sort of point, however!

                          2. n
                            Nanzi Nov 27, 2011 06:41 AM

                            I don't care what which studies show, I just know how much better I feel on a gluten free diet, and how bad I feel when I indulge in gluten laden foods. We went low carb for our weight, but it sure made a big difference in our health. And our bodies tell us in no uncertain terms when we violate what they want. Gerd is gone, heaviness after meals is gone, and we are thrilled. There must be something to it!! Our DR was pleased with how we are feeling and losing weight.

                            1. chefathome Dec 1, 2011 07:07 PM

                              The awareness these days is far greater. People now are able to ask doctors informed questions. I have celiac disease and as such have done TONS of research on it and keep updated constantly. Those with celiac disease who do not take it seriously absolutely drive me crazy as it gives those of us who do a bad reputation.

                              I believe it has been seriously under diagnosed. The specific testing must be requested - it is not part of a routine exam. Positive bloodwork is always positive but the incidence of false negatives is very high so frequently those who have negative bloodwork still do have it according to their symptoms and/or biopsies.

                              3 Replies
                              1. re: chefathome
                                r
                                racer x Dec 2, 2011 11:04 AM

                                "Positive bloodwork is always positive" isn't, strictly speaking, true.
                                http://consults.blogs.nytimes.com/201...

                                1. re: racer x
                                  chefathome Dec 2, 2011 03:02 PM

                                  One of the leading celiac specialists in the country disagrees (as do many). However, I am willing to agree that there is the odd possibility of it happening but I have not personally heard of it. Ever. Many of us folks on Celiac.com (I would say about 99%) have not heard of it happening. That doesn't necessarily mean it doesn't happen, though... We find that so many in the medical community are ill informed when it comes to celiac. Many are wonderful, too, but you would not believe how often I have heard stories of people who are told by their GPs they can have a little gluten if they are careful. That is so untrue!

                                  Anyway, thank you for pointing it out.

                                  1. re: chefathome
                                    j
                                    jsaimd Dec 2, 2011 03:36 PM

                                    I think this is a complex issue. The maladies listed here are all mediated through different mechanisms. And allergy is IgE mediated and often results in hives or a systemic reaction. Celiac is autoimmune, which results in blunting of the villi and potentially DH (but only the former is required for a diagnosis). Sensitivity is widely unknown but early studies have shown little villi impact, and so it is thought to be more akin to lactose intolerance. Because of these mechanisms the treatment is different. A true Celiac cannot have gluten. Period (although it appears extremely minute like 15 ppm may be OK). Allergy - it depends on the sensitivity to the protein and the resultant response. I have a friend whose kids are allergic to everything by lab tests, but when they were young they couldn't eat anything (extremely strange case). They were seen by top pediatric immunologists because of their condition, and they were told to feed them some things they were only slightly allergic to in order to boost nutrition and to deal with the hives. Seems to have worked - stopped the new allergies developing by mixing up the diet and boosting the over wellness of the kids. But they had hives all the time until they turned about 8. I have lots of friends who feel better when they don't eat gluten. If they want to deal with the after effects, they can. I have Celiac - my consequences are much greater. When I was diagnosed, my skin was peeling off, I was nightblind, osteoporotic and weighed 85 lbs. All from vitamin deficiency. My son is Celiac and although he was caught at 2 and if he accidentally ingests it he doesn't seem to have symptoms we know that the damage is still being done (Celiac can be silent until the damage progressive far enough down the intestine). He is gluten-free. The issue wiht the blood test is that people that don't seem to have any reaction to gluten, or have any villi damage have positive antigliadin numbers. (Note there are different blood tests - ttg is more specific for celiac). I had one friend mis diagnosed with a blood test, because the lab made an error on the reference range. Her biopsy was negative. Anyway, point is, if you think you have celiac and your tTg isn't off the charts (or even if it is) just get a biopsy. They you know that you can't eat gluten. I think this has been underdiagnosed for years. My favorite dx I received was repetitive food poisoning "because it is summer time and people leave food out" Not kidding. Doctors were always well meaning I believe but didn't know. Now they do, so the dx is going up. But most of the people I know that are going GF are not celiac - they just feel better. That is fine. It is nice if they consider it like lactose intolerance from my point of view (but without the lactaid pills). The only issue I have is people taking me less seriously. Perhaps selfish, but when I meet people that have 20 food intolerances that throw a huge scene at restaurants if they are not accommodated I know that it make restaurants that much more squeamish to deal with me. I am not saying that their symptoms aren't real, but from the studies I have seen there aren't reliable tests for those. It is based only on symptoms. And if you do have a restricted diet, even if it is Celiac, you have to always be grateful for the accomodations that are made in earnest.

                              2. j
                                jcgoodwin Dec 5, 2011 07:24 AM

                                I think its the spectrum issue. People see it all of the time with autism. Simply put, people often overreport their placement on the spectrum. Personally, I have a sensitivity to lactose, but I'm certainly not "lactose intolerant." As far as examining the work of medical professionals, I'm hesitant to say that gluten intolerances are over diagnosed.

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