• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Member Statistics

    80,766
    Total Members
    3,093
    Most Online
    beccaafeher
    Newest Member
    beccaafeher
    Joined
  • 0

    400% Increase in Risk of Death for Undiagnosed Celiacs


    Jefferson Adams

    Celiac.com 04/22/2009 - Not many studies have looked at prevalence and long-term outcome of undiagnosed celiac disease, and so not much is known about this aspect of the disease. Recently, a team of Mayo Clinic researchers conducted an assessment of the long-term outcome of undiagnosed celiac disease, and whether the prevalence of undiagnosed celiac disease has changed during the past 50 years.


    Ads by Google:




    ARTICLE CONTINUES BELOW ADS
    Ads by Google:



    The research team was made up of Alberto Rubio-Tapia, MD; Robert A. Kyle, MD; Edward L. Kaplan, MD; Dwight R. Johnson, MD; William Page, PhD; Frederick Erdtmann, MD, MPH; Tricia L. Brantner, MD; W. Ray Kim, MD, Tara K. Phelps, MS; Brian D. Lahr, MS; Alan R. Zinsmeister, PhD; L. Joseph Melton III, MD; and Joseph A. Murray, MD.

    For the study the team looked at blood samples taken from 9,133 healthy young adults at Warren Air Force Base between 1948 and 1954, along with samples from 12,768 sex-matched subjects from 2 recent cohorts from Olmsted County, Minnesota. Subjects from the Minnesota cohorts were matched for date of birth (n=5,558) or age at sampling (n=7,210) with the Air Force study.

    The research team tested the blood samples for tissue transglutaminase and, if abnormally high, for endomysial antibodies. They charted survival rates in a 45 year follow-up period in the Air Force and compared rates of undiagnosed celiac between the Air Force data and the recent cohorts.

    Of 9,133 Air Force subjects, 14 had undiagnosed celiac disease--a rate of 0.2%. In that cohort, persons with undiagnosed celiac disease had higher mortality rates across the board than those who had tested negative (hazard ratio=3.9; 95% CI, 2.0-7.5; P <.001).

    In the case of the Minnesota cohorts, the team found undiagnosed celiac disease in 68 persons with similar age at sampling (0.9%), and 46 persons with similar years of birth (0.8%). These recent cohorts showed rates of undiagnosed celiac disease that were 4.5-times and 4-times greater than the Air Force cohort (both P=.0001).

    The research team found that data from the 45 year of follow-up of Air Force subjects showed that people with undiagnosed celiac disease have a 400% higher risk of death than seronegative subjects ("non-celiacs"). They also concluded that rates of undiagnosed celiac disease seem have increased dramatically in the United States over the last 50 years.

    Gastroenterology - 13 April 2009 (10.1053/j.gastro.2009.03.059).

    0


    User Feedback

    Recommended Comments

    Guest Todd

    Posted

    Yeah but I'm already at a 100% risk of death so this data seems kind of irrelevant.

    Share this comment


    Link to comment
    Share on other sites
    Guest Fred Martin

    Posted

    Excellent article, though apparently some of the readers don't understand statistics...

    Share this comment


    Link to comment
    Share on other sites
    Guest Jefferson Adams

    Posted

    The key data point from the study is here:

     

    'Of 9,133 Air Force subjects, 14 had undiagnosed celiac disease--a rate of 0.2%. In that cohort, persons with undiagnosed celiac disease had higher mortality rates across the board than those who had tested negative (hazard ratio=3.9; 95% CI, 2.0-7.5; P <.001). '

    The researchers followed the group over a 45 year span and in every case, they showed earlier mortality than their non-celiac counterparts. They also corroborated and adjusted their numbers in accordance with a related study:

     

    'In the case of the Minnesota cohorts, the team found undiagnosed celiac disease in 68 persons with similar age at sampling (0.9%), and 46 persons with similar years of birth (0.8%). These recent cohorts showed rates of undiagnosed celiac disease that were 4.5-times and 4-times greater than the Air Force cohort (both P=.0001).'

     

    The reasons for increased mortality rates are likely due to the degenerative effects of undiagnosed celiac disease--excess cancers, nutritional deficiencies, other associated conditions, etc. The study didn't get into the 'Whys,' just the fact that mortality rates are higher--meaning undiagnosed celiacs die younger than those without celiac disease (specifically, if you have undiagnosed celiac disease, over the 45 year period in question, you would die earlier than 400 comparable people without celiac disease 100% of the time--follow? So if you compared 10 celiacs to 4000 non-celiacs, or 100 celiacs to 40000 non-celiacs, the celiacs would ALL die before the non-celiacs--for whatever reasons).

     

    They also note that with increased diagnosis and treatment trends, that this reality is changing. Fewer people will go through life with undiagnosed celiac disease, and so more people will live longer than they would have otherwise.

     

     

    -J.A.

    Share this comment


    Link to comment
    Share on other sites


    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • Ads by Google:

  • About Me

    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

  • Popular Contributors

  • Who's Online   22 Members, 0 Anonymous, 468 Guests (See full list)

  • Related Articles

    Scott Adams
    Arch Dis Child 2006;91:39-43.
    Celiac.com 12/08/2005 – Researchers in the United Kingdom conducted a systematic review and meta-analysis of 15 studies published between 1966 and 2004 that evaluated the association between breast-feeding and celiac disease. Their review covered more than 4,000 children and found that breast-feeding may offer protection against the development of celiac disease, especially if it is prolonged and covers the period when gluten is introduced. It was unclear, however, whether breast-feeding merely delays the onset of symptoms, or actually offers permanent protection against the disease, and more long-term prospective cohort studies will be necessary to make such a determination.

    Jefferson Adams
    Celiac.com 10/10/2008 - A team of Finnish researchers announced that they have found high rates of undetected celiac disease in elderly populations. They have also noted that a significant number of those older people diagnosed with celiac disease showed only minor symptoms. The study team was made up of doctors A. Vilppula, P. Collin, M. M¨aki, R. Valve, M. Luostarinen, I. Krekel¨a, H. Patrikainen, K. Kaukinen, and L. Luostarinen.
    Even with a wealth of new information on celiac disease from numerous recent studies, along with better testing methods, we still don’t know very much about rates of celiac disease in older people.  Motivated by that fact, the team recently set out to study the prevalence of celiac disease in elderly populations.
    In theory, celiac disease should occur in the elderly at rates similar to, or lower than, those of the general population. Since current research indicates that about 1 person in a hundred has celiac disease, it seems logical to figure that rates of celiac disease among the elderly would be the same or even lower than rates for the general population.
    The researchers figured that clinically silent or undiagnosed celiac disease would be rare in elderly populations, as they would be likely to develop obvious symptoms. But the team was surprised to find that rates of celiac disease among the elderly are more than double those of the general population.
       
    They looked at 2,815 individuals between the ages of 52–74. They took blood samples from everyone and isolated people who showed signs of clinical celiac disease. They then screened the samples for IgA tissue transglutaminase antibodies. Subjects with positive antibody tests were given a small bowel biopsy. The doctors found celiac disease in 60 individuals, 25 (0.89%) through positive blood tests, and 35 (1.24%) through biopsy, for a total prevalence of in elderly subjects of 2.13% with 95% confidence intervals (1.60–2.67%). Of the screen-detected cases, only 15 had symptoms, and those were mostly mild. Driving home the dangers of late diagnosis, two out of the 60 had small bowel T-cell lymphoma and two had gastric cancer.
    Altogether, celiac disease was diagnosed through biopsy, and by blood test without a post-gluten-free diet follow-up test at a rate of 2.45% (1.88–3.02%).
    This study shows that celiac disease is far more prevalent in elderly people than in the general population.  To better detect and treat celiac disease in elderly populations, the doctors are encouraging the use of active case finding using blood tests, since undetected celiac disease can lead to serious complications and even early death.
    2008 Editrice Gastroenterologica Italiana S.r.l.


    Jefferson Adams
    Celiac.com 04/06/2009 - Celiac sufferers around the globe are anxiously awaiting word from Australia, as the world's first vaccine trials for the treatment of celiac disease get underway in Melbourne. In April, Bob Anderson, of the Walter and Eliza Hall Institute of Medical research, will begin the initial phase of the first-ever trials for a celiac vaccine that, if successful, might just mean the end of gluten-free diets for those with celiac disease.
    The treatment has been successful in mice and is now ready to be tested on humans. In this initial phase, 40 volunteers with celiac disease will receive doses of the vaccine over an 11-month period to determine that it will cause no harm. Once researchers make sure the vaccine is safe, they will begin phase II trial, wherein they give vaccine doses to trial subjects and evaluate their responses to gluten challenges to determine the efficacy of the vaccine. Evaluation will include an examination of immune response and intestinal condition to determine the level of gluten tolerance.
    The vaccine therapy involves repeatedly injecting solutions of gluten at increasing concentrations. The goal is to reduce and ultimately eliminate gluten sensitivity slowly, in a manner similar to common allergy desensitization treatments. The road to the development of this treatment has not been easy. Dr. Anderson is that rare combination of medical doctor (gastroenterologist) and PhD scientist who is able to develop practical treatments from bedside observations. After struggling to gain funding throughout his research career, he eventually patented his vaccine and co-founded Nexpep in an effort to develop the vaccine on his own. Because, like common dust and hay fever allergy therapies, this treatment approach may allow people with celiac disease to actually consume the gluten that produces the toxic reaction and reduce or even eliminate that reaction via vaccination. This approach will also serve as a model for a vaccine approach for other immune conditions such as type 1 diabetes, rheumatoid arthritis and multiple sclerosis.
    Until recently, doctors thought celiac disease was rare. But according to statistics, it is twice as common as type1 diabetes or breast cancer. Celiac disease is now known to strike one per cent of Americans, but although modern blood testing has made early detection accurate and efficient, most people with celiac disease still do not know that they have it. Just 3% of sufferers have been diagnosed, leaving nearly 3 million people undiagnosed, and therefore unable to benefit form simple treatment in the form of a gluten-free diet. Long-term risks for untreated celiac disease include malnutrition, infertility, osteoporotic fractures, liver failure and various cancers. Symptoms can vary between individuals, with some experiencing no symptoms at all, even though damage to the bowel and general health still occurs whether or not symptoms are present.
    Presently, long-term monitoring of dietary compliance for celiac patients is haphazard at best, and standards for gluten-free products have yet to take effect in the USA and other countries. Geoff Withers, director of pediatric gastroenterology at Brisbane's Royal Children's Hospital, points out that a gluten-free diet is "notoriously difficult. It is expensive and lifelong, and comes at a cost to the individual." Even treatment with a gluten-free disease is no panacea. People on gluten-free diets routinely suffer from a deficiency of certain vitamins, especially B vitamins. Roughly half of those following gluten-free diets have impaired intestinal healing due to compliance issues, and that means they are in danger of associated risks which include cancer.
    A successful vaccine could have massive consequences for treatment of celiac disease, and might radically improve the lives of those with the condition.


    Jefferson Adams
    Celiac.com 03/08/2012 - Eating gluten-free for an entire lifetime is no easy task. Many people with celiac disease and gluten-sensitivities would love an alternative to a gluten-free diet, and a number of companies are looking to develop alternative therapies that would enable people to consume gluten without suffering damage.
    Even though nearly all drug-development programs include gluten challenges, very little is known about the duration of gluten challenge and gluten dosage. That is, how quickly does gluten cause damage, and at what dosages?
    A team of researchers recently studied the ways in which antibodies respond and mucosa change when the small bowel is exposed to gluten in people with celiac disease. The study team included Marja-Leena Lähdeaho, Markku Mäki, Kaija Laurila, Heini Huhtala, and Katri Kaukinen.  
    To assess the amount of gluten-exposure needed to cause some small-bowel mucosal deterioration, the team conducted a gluten-challenge on twenty-five adult celiac patients. Each patient received either a low (1-3 g) or moderate (3-5g) doses of gluten daily for 12 weeks.
    The team assessed patient symptoms, including small-bowel morphology, densities of CD3+ intraepithelial lymphocytes (IELs) and celiac serology.
    Their results showed that both moderate and low amounts of gluten induced small-bowel damage in 67% of celiac patients. However, moderate gluten doses also caused mucosal inflammation and gastrointestinal symptoms in seven patients that lead to their premature withdrawal from the study. Interestingly, 22% of patients who developed significant small-intestinal damage showed no symptoms.
    The team concludes that, for most people with celiac disease, even low amounts of gluten can cause significant mucosal changes. However, since many people with celiac disease show no such response, sample sizes must be large enough to be statistically significant.
    Source:

    BMC Gastroenterology. 2011;11(129).

  • Recent Articles

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

    Jefferson Adams
    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    Ingredients:
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?

    Jefferson Adams
    Celiac.com 07/12/2018 - Previous research has shown that the oral administration of Bifidobacterium infantis Natren Life Start super strain (NLS-SS) reduces of gastro-intestinal symptoms in untreated celiac disease patients. The reduction of symptoms was not connected with changes in intestinal permeability or serum levels of cytokines, chemokines, or growth factors. Therefore, researchers suspected that the reduction of symptoms might be related to the modulation of innate immunity.
    To test that hypothesis, a team of researchers set out to assess the potential mechanisms of a probiotic B.infantis Natren Life Start super strain on the mucosal expression of innate immune markers in adult patients with active untreated celiac disease compared with those treated with B. infantis 6 weeks and after 1 year of gluten-free diet.
    The research team included Maria I. Pinto-Sanchez, MD, Edgardo C. Smecuol, MD, Maria P. Temprano,RD, Emilia Sugai, BSBC, Andrea Gonzalez, RD, PhD, Maria L. Moreno,MD, Xianxi Huang, MD, PhD, Premysl Bercik, MD, Ana Cabanne, MD, Horacio Vazquez, MD, Sonia Niveloni, MD, Roberto Mazure, MD, Eduardo Mauriño, MD, Elena F. Verdú, MD, PhD, and Julio C. Bai, MD. They are affiliated with the Medicine Department, Farcombe Family Digestive Health Research Institute, McMaster University, Hamilton, ON, Canada; the Small Intestinal Section, Department of Medicine and the Department of Alimentation at Dr. C. Bonorino Udaondo, Gastroenterology Hospital and Research Institute at the Universidad del Salvador in Buenos Aires, Argentina.
    The team determined the numbers of macrophages and Paneth cells, along with the expression of a-defensin-5 expression via immunohistochemistry in duodenal biopsies.
    Their results showed that a gluten-free diet lowers duodenal macrophage counts in celiac disease patients more effectively than B. infantis, while B. infantis lowers Paneth cell counts and reduces expression of a-defensin-5.
    This study documents the differential innate immune effects of treatment with B. infantis compared with 1 year of gluten-free diet. The team calls for further study to better understand the synergistic effects of gluten-free diet and B. infantis supplementation in celiac disease.
    Source:
    J Clin Gastroenterol