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  • Jefferson Adams
    Jefferson Adams

    Most People Diagnosed With Celiac Disease Show No Symptoms

    Celiac.com 02/18/2008 - A greater awareness of celiac disease, coupled with better and more accurate tests for celiac disease have helped to bring about a situation where most people currently diagnosed with celiac disease show no symptoms at the time of their diagnosis. Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. This finding has caused doctors to call for an adjustment to screening procedures for high-risk populations.

    A team of researchers led by Dr. Grzegorz Telega recently surveyed medical records of people diagnosed with celiac disease at Children's Hospital of Wisconsin from 1986 to 2003. The statistics showed that the number of celiac disease diagnosis rose from a single case in 1986 to 93 cases in 2003. The total number of cases during that period was 143.

    Before the mid-1990’s, more than 85% of children diagnosed with celiac disease were under 10 years old, with the average age being just over 5 years old. After 1995, less than 50% of children diagnosed with celiac disease were under 10 years old, and the average age at diagnosis had risen to about 8.5 years of age. Children diagnosed before the age of 3 years old usually complained of classic celiac-associated gastrointestinal symptoms, such as malnutrition, diarrhea, abdominal pain, and bloating, while children diagnosed at older ages had less pronounced symptoms.

    One of the important conclusions made by the research group is that the possibility of celiac disease should be strongly considered in people with other autoimmune disorders, even if those people do not show gastrointestinal symptoms traditionally associated with celiac disease.

    The research team called upon primary care doctors to adopt a practice of celiac screening for all people with elevated risk factors, including people with a family history of celiac disease, people with Addison’s disease Down Syndrome type 1 diabetes, thyroiditis, Turner syndrome, and type 1 diabetes. The team also called for screening of patients with short stature, iron deficiency anemia, and high transaminase levels.

    Arch Pediatr Adolesc Med 2008;162:164-168.


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    I think Doctors need to be educated on the fact that not all celiacs show symptoms. My Son recently asked his Dr. for the blood test but the Dr. refused as he didn't show any symptoms. However as his Mother (with Celiac) I strongly suspect he may have it.

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    Found the article very informative, since I was diagnosed with Celiac just over 16 months ago. Although, I've probably had the problem for at least four-and-a-half years. That is when I developed a rash that included bubbles filled with what appeared to be water. These appeared mostly on my elbows, knees, and other parts of my body. For 3 solid years, I went to a local well-known Dermatologists office. My problem was never diagnosed, I was told it could be exzema, or some other such rash. A biopsy was done which I was told was 'inconclusive'. At time my doctor moved out of state and was replaced by another female doctor. I opted to see this new doctor. On my first visit with her she looked at the rash which at this time now appeared on my elbows. She asked if I would mind if she did a biopsy. I reminded her that I had just a biopsy, and she said that she was aware of that, but wished to do a second biopsy. She called me with the results and said that I had a case of Dermatitis Herpetaformis. I immediately research DH and read about its association with Celiac. She suggested that I go for a blood test to see if Celiac was detected. I then was told that the results pointed strongly to Celiac, and that the Gold Standard was the Endoscopy. After the Endoscopy, the doctor told me that I indeed had Celiac. I don't ever remember having any Celiac-related symptoms, and was totally shocked. I have since gone on a zero-tolerance Gluten-Free diet, and immediately dropped 24 pounds, not a good way to lose weight. I have since put back on about six pounds, and feel good, but still have problems finding stuff to eat that will make me happy. I hated giving up pizza, and I was a big fan of Italian pastry, and while it has eased the pain a bit, I'd really like to know if I will ever be able to eat pizza or pastry again, even if not reverting to a 'normal' diet again. I'd like to hear some input from other readers. Is there a time that I can get tested to find out if I am healing (or will ever heal). Thanks.

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    Guest Dr. Stephen Wangen

    Posted

    There really is no good medical reason not to do a blood test for celiac disease, especially with a family history of celiac disease or gluten intolerance. If doctors really wanted to do true preventive medicine, then we would be screening people for this condition long before they ever developed obvious symptoms. And of course, the list of potential signs and symptoms is very long. If your doctor won't run the test, then you should find someone who will.

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    I had Celiac disease for over a year and a half before it was diagnosed even though I had very classic symptoms. I was placed on a whole wheat diet and went through a litany of tests before I was finally diagnosed. My doctors claimed they didn't test for it because such a small percentage of the population has it that they thought it was unlikely. It was only after my diagnosis that I started to realize that other problems I had when I was younger (joint pain, poor circulation, gastrointestinal discomfort and cramping and low iron levels) were probably early indicators. The symptoms can be so broad and subtle that I think it's unfortunate that doctors don't test for it more readily and more often. I feel lucky that I was diagnosed as early as I was.

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    Guest Sherry-Ann Herman-Kalpoo

    Posted

    I think that the blood test should be done at some point in your life even though you do not have any symptoms. I do not think that I have celiac disease but would like to get tested, because my baby was just six months old when she started having severe diarrhea. For three months I visited doctors in my country Trinidad and they could not find anything wrong with her. She started loosing weight rapidly from 12 lbs. she went to 9 lbs. in just a matter of a week , she started getting life less. Finally I asked my doctor to get me a recommendation to visit Miami Children's Hospital where we visited DR. Jesse Revees Garcia a gastroenterologist and he did a biopsy and a endoscopy and my baby was diagnosed with celiac disease even though neither my husband or my self does not have any symptoms associated with celiac disease.

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    I was just wondering it anyone knew the consequences of not following a gluten free diet if you've been positively diagnosed, but show no symptoms.

     

    Please consider the people who show no difference in attitude or fecal excretion on or off the diet, but have been given the 100% positive diagnosis more than once.

     

    If you show no visible difference on or off the diet, then is it necessary to go on a gluten free diet?

     

    If so many people show no symptoms and are never diagnosed, then it is possible you could've potentially gone your whole life without knowing, and remained happy eating chewy 2$ loaves of bread and takeout pizza.

     

    Sure by not going on a gluten free diet, you've increased your risk of some diseases, but by how much? And don't a lot of things increase our risk of dying? What happens if you go on a gluten free diet and get osteoporosis anyways? I'd be pretty bitter that I said no to my grandmother's homemade birthday cake just because I was on a diet that turned out to make little difference in my health except make my life a whole lot more miserable.

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    I found this to be very informative and it also helped me to feel a little more connected. I sometimes feel so alone with this disease. Thank you again.

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    Five stars. Lynch's comment gets the boot; that denial stage is a bugger! For all in denial: You are in control of your health. Are you as healthy and happy as you can be? It seems that some people need the threat of cancer looming over them in order to comply with a gluten-free diet. Well - you have it - intestinal lymphoma is a real possibility in untreated sprue. REFERENCE: Intestinal lymphoma and sprue: A systematic approach

    Dutz et al. Gut.1971; 12: 804-810.

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    I'm in denial..I've been watching seriously now for 9 months and today I ate a chocolate chip cookie...it was just looking at me and now I'm suffering...my stomach is talking, my back is killing me, I have to go lay down, my head hurts, I'm just a mess... so this last fling...is over...why do I do this?

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    I think this is a good article but I wish someone would talk more about those without NO symptoms. it is so hard for us. yes, I'm glad I don't get sick, but I never know if I am accidentally taking in gluten (I have been gluten-free for almost a year) and it makes me doubt my positive celiac disease diagnosis. I am strongly considering doing the gluten challenge for this reason. I never had a biopsy and think maybe I should do it just in case. But I know all about the complications with the gluten challenge, and I'd hate to have done that to myself (getting back on gluten ... yuck!) and then not get an accurate result. so stressed!

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    I have been on the gluten free diet for 5 1/2 weeks now and been told I have celiac disease. I have never been tested to find out for sure if I have it. I was in the hospital and my medical Doctor just assumes I have it.

    I did the gluten challenge and I know I am gluten free.

    Also another one of my doctors wants me to have a test to find out if I am indeed celiac, so I agreed to be tested. That should be soon. I'm sure I am though...

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    I was diagnosed with Celiac Disease 5 years ago. During those five years I followed the gluten free diet, but I did cheat regularly because I never had symptoms. Recently a new form of blood testing was discovered, so my doctor had me re-tested. I just found out 2 days ago that I do not have Celiac Disease. So I wouldn't trust a doctor's speculation, get the test done to be sure.

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

  • Related Articles

    Scott Adams
    Wahab PJ, Meijer JW, Mulder CJ.
    Department of Gastroenterology and Hepatology, Rijnstate Hospital Arnhem, The Netherlands.
    Am J Clin Pathol 118(3):459-463, 2002
    Celiac.com 10/28/2002 - The following study strongly supports follow-up care and testing for people with celiac disease. As the study found, over 10% of people with diagnosed celiac disease have still not fully recovered even after five years of treatment.
    To assess histologic recovery in response to gluten withdrawal in celiac disease, 158 patients seen in our hospital during a 15-year period underwent follow-up small intestine biopsies (SIBs) within 2 years after starting a gluten-free diet; further SIBs were done if villous atrophy was present. A modified Marsh classification was used (IIIA, partial villous atrophy; IIIB, subtotal villous atrophy; IIIC, total villous atrophy). Of patients with Marsh IIIA, IIIB, or IIIC lesions, histologic remission was seen in 65.0% within 2 years, 85.3% within 5 years, and 89.9% in long-term follow-up. Eleven patients (7.0%) with persisting (partial) villous atrophy had symptoms and signs of malabsorption and were considered to have refractory celiac disease; 5 of them developed an enteropathy-associated T-cell lymphoma. Children recovered up to 95% within 2 years and 100% in the long-term. Histologic recovery in celiac disease after starting a gluten-free diet takes time and is incomplete or absent in a substantial subgroup of patients (10.1% villous atrophy after 5 years). Systematic follow-up of patients with celiac disease and the malabsorption syndrome and secondary complications is needed.

    Scott Adams
    J Pharmacol Exp Ther. 2004 May 13
    Piper JL, Gray GM, Khosla C. Stanford University.
    Celiac.com 11/28/2004 - A study by researchers at Stanford University looked at the ability of Prolyl endopeptidase (PEP)--a specific type of enzyme--to break down gliadin peptides in a living organism--rats. In an effort to determine whether a resistance to the break down of proteins by proteases enzymes is the cause of toxicity of the Pro- and Gln-rich peptides, the scientists analyzed the digestive resistance of a panel of alpha and gamma-gliadin peptides that are believed to induce gluten toxicity--all of which happen to be very resistant to gastric and pancreatic protease digestion--but can be broken down by intestinal brush border peptidases. The researchers determined that supplementation of PEP substantially reduced the concentrations of these peptides, and they determined a pharmacologically useful PEP dosage. According to the researchers: "This data verifies and extends our earlier proposal that gliadin peptides, while resistant to proteolysis, can be processed efficiently by PEP supplementation. Indeed, PEP may be able to treat Celiac Sprue by reducing or eliminating such peptides from the intestine."

    Jefferson Adams
    A Systematic Review of Diagnostic Testing for Celiac Disease Among Patients With Abdominal Symptoms
    Celiac.com 06/03/2010 - Clinical presentation of celiac disease can vary considerably from patient to patient. Most patients with celiac disease present atypical symptoms. Moreover, most patients who present abdominal symptoms in primary care do not have celiac disease, and so diagnostic tests for celiac disease are not necessary and should be avoided.
    A team of researchers recently conducted a systematic review of diagnostic testing for celiac disease among patients with abdominal symptoms.
    The team included Daniëlle A. W. M. van der Windt, PhD; Petra Jellema, PhD; Chris J. Mulder, MD, PhD; C. M. Frank Kneepkens, MD, PhD; and Henriëtte E. van der Horst, MD, PhD. Their article appears in the Journal of the American Medical Association.
    The goal of the research was to review and summarize evidence on the performance of diagnostic tests for spotting celiac disease in adults who present abdominal symptoms in primary care or similar settings.
    To obtain initial data, the team search MEDLINE (from January 1966  through December 2009, and EMBASE from January 1947 through December 2009. They also conducted a physical search of references for additional relevant studies.
    The team chose cohort or nested case-control diagnostic studies which included adults presenting non-acute abdominal symptoms, which featured celiac disease prevalence of 15% or less, and in which the tests included gastrointestinal symptoms or serum antibody screens.
    Two independent reviewers conducted studies tool and data extraction. They then calculated sensitivities and specificities for each study and computed pooled estimates using bivariate analysis where there was clinical and statistical homogeneity.
    In all, the team included sixteen studies encompassing 6085 cases in their review.
    Specificity, sensitivity, and confidence intervals for predicting celiac disease varied with abdominal symptoms.  For patients presenting with classic diarrhea, for example, predictive sensitivity ranged from 0.27 to 0.86, while specificity ranged from 0.21 to 0.86.
    Pool estimates for 8 studies on IgA antiendomysial antibodies were 0.90, with a 95% confidence interval [CI] (0.80-0.95) for sensitivity and 0.99, with a 95% CI (0.98-1.00) for specificity, with a positive likelihood ratio [LR] of 171 and negative LR of 0.11.
    Pool estimates for IgA antitissue transglutaminase antibodies (7 studies) were 0.89, with a 95% CI (0.82-0.94) and 0.98 at 95% CI (0.95-0.99), respectively, with a positive LR of 37.7 and negative LR of 0.11.
    IgA and IgG antigliadin antibodies showed variable results, especially for sensitivity, which ranged from 0.46-0.87 for IgA, and from 0.25-0.93 for IgG.
    One recent study using deamidated gliadin peptides showed good specificity (0.94), but the target population offered limited supporting evidence.
    For adults who present abdominal symptoms in primary care or other unscreened settings, IgA antitissue transglutaminase antibodies and IgA antiendomysial antibodies offer high sensitivity and specificity for diagnosing celiac disease.
    SOURCE:  JAMA. 2010;303(17):1738-1746. doi:10.1001/jama.2010.549


    Jefferson Adams
    Celiac.com 01/11/2012 - In an effort to understand how delayed celiac disease diagnosis became the norm for most patients over the last few decades, a research team conducted a study to assess the issue. Their study also looked at how delayed diagnosis affects health-related quality of life (HRQoL) for those with celiac disease, and considered differences with respect to sex and age.
    For the study, the team collaborated with the Swedish Society for Coeliacs to send a questionnaire to 1,560 randomly-chosen members, divided equally by age and sex. A total of 1,031 members (66%) responded. The team first measured HRQoL using the EQ-5D descriptive system, then translated the results to quality-adjusted life year (QALY) scores.
    The team then compared the results against the results from a survey of the general population. There was some good news and some bad news.
    The good news is that, while the average QALY score during the year before treatment was 0.66, it improved after diagnosis and treatment to 0.86, which is  better than that the score of 0.79 for the general population.
    The bad news is that they found the average person with celiac disease faced a delay in diagnosis of 9.7 years from the first symptoms, and 5.8 years from the first doctor visit.
    The team concede that the delay has been reduced over time for some age groups, but contend that it still remains unacceptably long for large numbers of people.
    Untreated celiac disease results in poor HRQoL, which improves or exceeds that of  the general population if diagnosed and treated. Reducing the delay in diagnosing celiac disease will go a long way toward reducing the burden of celiac disease.
    To do so, they say it is necessary to raise awareness of celiac disease as a common health problem, and to intensify diagnosis practices. This may, the note, make mass-screening for celiac disease an desirable option in the future.
    Authors: Fredrik Norstrom, Lars Lindholm, Olof Sandstrom, Katrina Nordyke, Anneli Ivarsson
    Source:

    BMC Gastroenterology 2011, 11:118. doi:10.1186/1471-230X-11-118

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    Im the same, I never know what to eat, some food does better than others for me, I went on to make my own soup and Im glad I did, I should do it more often and at least then J know what's going in to it, it wasn't the best first try but I enjoyed it haha
    Thank you for the advice, in the end I went and made my own soup, not great for my first try but it was better than potentially making myself worse, I enjoyed it, I got some vitamains too to take, I was able to find a liquid Vitamain B Complex, the store I went to was helpfull enough to show me what was Gluten Free.   I fealt awful around then, Im feeling like I have more energy now I can actually do things and focus more, Ill keep on like I have been, Im not 100% and still have some B
    Not to mention the fact that (for those using the Nima) the Nima sensor has been known to give false positives. https://www.theverge.com/2019/4/1/18080666/nima-sensor-testing-fda-food-allergy-gluten-peanut-transparency-data https://www.celiac.ca/cca-statement-nima-gluten-sensor/ https://www.allergy-insight.com/nima-is-it-really-96-9-accurate/ https://www.glutenfreewatchdog.org/news/troubling-gluten-testing-data-released-by-nima-but-hold-the-phone/ https://www.glutenfreew
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