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    • Scott Adams

      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    Is it Time to Revise the Criteria Used to Diagnose Celiac Disease?


    Jefferson Adams

    Celiac.com 06/03/2008 - Among the main things doctors look for when they’re trying to make a classic diagnosis of celiac disease are small intestinal mucosal membrane villous atrophy and inflammation. However, the latest research indicates that these criteria are possibly too narrow, leading to a lack of diagnosis and treatment of people with celiac disease. If this turn out to be the case, then far more people than previously imagined may suffer from celiac disease and not even know it.


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    In an effort to find out if present current diagnostic criteria are in fact too narrow, Finnish researchers led by Markku Maki, MD, professor of pediatrics at the University of Tampere, Celiac Disease Study Group, Tampere, Finland, evaluated 145 patients who were presumed to have celiac disease. Just under half (71) of the patients showed positive endomysial antibodies, and out of these only 48 patients met the textbook definition for celiac disease.

    The research team then split the 23 patients left into two groups. They put the first group on a gluten-free diet for one year, and the second group on a on a standard gluten-inclusive diet for one year. At the end of the year, the doctors conducted follow-up biopsies on all 23 patients. The doctors discovered that the patients who had been on the gluten-free diet did in fact have celiac disease (even though they didn't have any obvious symptoms), and any symptoms that they did have disappeared—they lost their endomysial antibodies and any inflammation that was detected in their intestinal mucosa.

    On the other hand, the patients in the second group whose diets included gluten showed no such positive changes, and their symptoms continued. The still showed positive endomysial antibodies, along with inflammation of intestinal mucous membrane, and gluten-induced lesions in the small intestine.

    The study director said that each of the patients on the gluten-free diet had chosen to remain gluten-free thereafter, and that the patients on the gluten-inclusive diet had chosen to eliminate gluten from their diets and over time also became symptom-free—endomysial antibody-free and showed signs of healing of the mucous membrane.

    Other studies have shown that over time untreated patients who show positive endomysial antibodies may develop the gut injury that is currently required as part of the criteria for diagnosing celiac disease. A greater understanding of the negative effects of untreated or undiagnosed celiac disease, coupled with better testing methods have led to a new strategy that allow doctors to detect celiac disease as early as possible—before any serious damage can occur—this new strategy is likely to be resoundingly welcome among celiac disease sufferers.

     Hopefully the results of this study and others like it will lead to a new awareness among doctors, and will ultimately lead to better methods for diagnosing celiac disease at an earlier stage. This could ultimately mean less suffering and long term physical damage for many people.

    Presented at 2009 Digestive Disease Week in San Diego, CA by Dr. Kurppa, a member of Dr. Maki’s research team, on Tuesday, May 20 at 10:30 a.m. Pacific Time in room 10 (San Diego Convention Center).


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    Guest krista

    Posted

    This was a good article, I just wish the doctors would get their minds out of just the gut. I thought I was going to see that they were finding that celiac is a systemic disorder, which it is, and that they were recognizing the neurological impact. Unfortunately that is not the case but it is wonderful to see that they are recognizing the idiocy of us having to be almost dead before diagnosis. I feel really sorry for the group that had to eat gluten for a year but also know they most likely volunteered for the research. It's also unfortunate for us in the US that this research most likely will be ignored by US doctors for at least 10 years.

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    Guest lcarter

    Posted

    'The doctors discovered that the patients who had been on the gluten-free diet did in fact have celiac disease (even though they didn't have any obvious symptoms), and any symptoms that they did have disappeared—they lost their endomysial antibodies and any inflammation that was detected in their intestinal mucosa.' What criteria did the researchers use then to conclude that this group had Celiac Disease? Why can't that criteria be used to diagnose the disease now?

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    Guest brian

    Posted

    Eat gluten=get symptoms

    Don't eat gluten=don't get symptoms

     

    Is there something else the doctors need? Just because the doctor or I know that I have a particular antibody or intestinal swelling does not change the fact that I am healthier without gluten. Who needs them anyway! You don't need a diagnosis or a medical degree to discover if gluten makes you sick! Don't get me wrong, I work in the medical field, and doctors can do a lot of great things. But they have absolutely missed the ball on this one. How about studying why our bodies are rejecting gluten and fix that. I'll buy the first round of beer to that discovery! But that requires more than just 'watching and waiting' , doesn't it?

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    Guest Ursa Major

    Posted

    I am glad that it was determined that those people had celiac disease after all. But what about those people who did NOT have antibodies? I feel that many (if not most) of them have celiac disease as well. Yet nobody gave them the chance of having a biopsy and trying the diet as well. That is a shame.

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    Seriously! I was indeed half dead before I was diagnosed, and, four years into the gluten-free diet, I still suffer from the neurological problems, which my doctor says may actually never resolve completely.

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    The other question is, how long will it take for the FDA to get this information? In just a few months we will know if they are going to side with making it easy for manufacturers having so many parts per million of gluten or will they protect us from these crazy manufacturing practices of allowing so many part per million of gluten and rule for zero parts per million gluten.

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    Guest Roxanna

    Posted

    In my family myself and my daughter were taken off of gluten after having seizures not long after being born. We both grew progressively worse over time. By the time I found out that I could not eat gluten I was almost dead. As our daughter, we have a son that was born with the picture perfect symptoms of a gluten problem. After suffering through not being able to talk, seizures, not having feeling all over his body, the list goes on, he is now gluten free. He is 26 yrs old. A little to late. Our daughter was not given meds to help with her seizures until she was 15. Recently my husband was put in a trauma center for a brain injury. He has thrown up for years. Since we dated. He was held over in the hospital because he wouldn't stop throwing up. Finally, (you guessed it) the doctor put him on a gluten free diet. He is beginning to recover. We have a new grand child. He will NOT be introduced to gluten until he is about 2 yrs. A that time it will only be to test him. We hope and pray that he doesn't accidentally get poisoned with it before then. That probably is impossible because people love to kiss babies in the mouth.

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    I submitted a stool sample and a DNA cheek swab (to Enterlab.com) for my 22 month old son who had 'unexplained' chronic diarrhea that would likely 'turn into IBS' as an adult. Within 2 weeks I learned he has food intolerances to gluten, milk, soy, egg, and yeast. I was determined to find the cause of the 'unexplained diarrhea'. I removed the poisons and his stool is totally normal. The doctors continue to buck this type of testing only because it leaves them out of the $$ loop. I thank GOD every day that I stumbled across this very impressive and professional lab in Dallas TX... that works directly with the public!!

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    Guest carolyn

    Posted

    I'm glad at least some are taking seriously that the current standards for diagnosing celiac disease are not working. Repeat: They are definitely not working. It's rather infuriating that so many, many celiacs in the U.S. still will not be diagnosed until they are literally dying from it, already have resulting cancer or other serious, irreversible complications. The blood test is not infallible, and the endoscopy test (as this article proves) only catches the latest stages of the disease. This standard is no way for doctors to fulfill their promise to 'do no harm' to their patients. When a gluten-free diet reverses the often life-disrupting symptoms, that should be a neon-lit red flag that just maybe this person has celiac disease. What other causes of gluten intolerance are there?

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  • Related Articles

    Scott Adams

    J Clin Gastroenterol. 2003 Nov-Dec;37(5):387-91
    Tursi A, Brandimarte G, Giorgetti GM.
    Celiac.com 11/18/2003 - According to the results of an Italian study neither anti-transglutaminase (tTG) nor Anti-endomysium (EMA) antibody levels should be used to determine the state of recovery of gluten-free celiacs. The study looked at 42 consecutively biopsy and blood antibody diagnosed celiac disease patients who went on gluten-free diets, and were then evaluated at 6, 12, and 18 months using anti-transglutaminase (tTG) antibodies and EGDscopy (multiple bioptic samples). For comparison sorbitol H2-breath tests (H2-BT) and anti-endomysium (EMA) antibody tests were also carried out. The results:

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    Scott Adams

    Pediatrics 2005;115:1341-1346.
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    According to the researchers, using tTG values of greater than 100 U and less than 20 U, and knowing the patients IgA status, tTG testing was "98% sensitive and 97% specific in detecting celiac disease." The researchers also point out that the cost of diagnosis could be cut by 30% by utilizing tTG screening. The researchers conclude that children with high tTG titers can proceed straight to a gluten-free diet--if they respond well then their diagnosis is confirmed—if not they can proceed to a biopsy.
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    Scott Adams

    Celiac.com 03/14/2006 - Alba Therapeutics Corporation announced today successful completion of Phase Ib proof-of-concept studies for its lead compound, AT1001. In a 21-patient cohort of celiac disease sufferers, the oral administration of AT1001 versus placebo control induced a significantly positive result in the trials primary target endpoint. "We anticipated a strong signal, however, the magnitude of the response surpassed our expectations," stated Blake Paterson, M.D., President and CEO of Alba. "We are particularly excited, as to the best of our knowledge this is the first demonstration of a desired and systemic immunological effect resulting from a physiological event at a mucosal surface."
    AT1001 is an antagonist to the zonulin system -- a signaling pathway discovered by Alessio Fasano, M.D., Professor of Pediatrics, Medicine and Physiology at the University of Maryland School of Medicine, and the basis of Albas extensive intellectual property portfolio.
    About Zonulin
    Zonulin is a signaling protein that transiently and reversibly opens the tight junctions ("tj") between the cells of epithelial and endothelial tissues such as the intestinal mucosa, blood brain barrier and pulmonary epithelia. Zonulin appears to be involved in many diseases in which leakage occurs via paracellular transport across epithelial and endothelial tight junctions (tj), and thus may play an important potential role in the treatment of autoimmune diseases.
    About Celiac Disease
    Celiac disease (celiac disease) is a T-cell mediated auto-immune disease that occurs in genetically susceptible individuals and is characterized by small intestinal inflammation, injury and intolerance to gluten. According to the National Institutes of Health, celiac disease affects approximately 3 million Americans, although the diagnosis is rarely made. The only current treatment for celiac disease is complete elimination of gluten from the diet, which results in remission for some patients.
    About Alba
    Alba Therapeutics Corporation is a privately held biopharmaceutical company based in Baltimore, Maryland. Alba is dedicated to commercializing disease-modifying therapeutics and drug delivery adjuvants based on the zonulin pathway. Albas lead molecule, AT-1001, is targeted towards the treatment of celiac disease and other auto-immune illnesses.
    Contact: Heather Bakalyar, 410-522-8708 x1106

    Scott Adams

    Am J Gastroenterol. 2006;101(7):1597-1600. Celiac.com 08/14/2006 – In an effort to increase the diagnosis rate of celiac disease, researchers in Italy conducted a study to determine the accuracy of two of the new "at home" type rapid commercial celiac disease test kits--both of which require only one drop of whole blood to gain results. Both of the kits detect IgA-IgG anti-human-transglutaminase antibodies (anti-h-tTG) in serum and IgA anti-h-tTG antibody in a single drop of whole blood. The researchers analyzed the serum samples of 114 biopsy-confirmed celiacs, 120 healthy controls, 20 first-degree relatives of celiacs, and 75 diseased controls, and compared them to the standard enzyme-linked immunosorbent assay testing method. Whole blood samples were taken in 51 of the biopsy-confirmed celiacs and 100 controls.
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    Given the high degree of accuracy of the two commercial test kits that were evaluated the researchers conclude that general practitioners should utilize these low cost kits during standard office visits whenever celiac disease is suspected.

  • Recent Articles

    Jefferson Adams
    Celiac.com 05/22/2018 - Proteins are the building blocks of life. If scientists can figure out how to create and grow new proteins, they can create new treatments and cures to a multitude of medical, biological and even environmental conditions.
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    Source:
    Bloomberg.com

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    Celiac.com 05/21/2018 - Just a year ago, Starbucks debuted their Canadian bacon, egg and cheddar cheese gluten-free sandwich. During that year, the company basked in praise from customers with celiac disease and gluten-sensitivity for their commitment to delivering a safe gluten-free alternative to it’s standard breakfast offerings.
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    Jefferson Adams
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    Zyana Morris
    Celiac.com 05/17/2018 - Celiac disease is not one of the most deadly diseases out there, but it can put you through a lot of misery. Also known as coeliac, celiac disease is an inherited immune disorder. What happens is that your body’s immune system overreacts to gluten and damages the small intestine. People who suffer from the disease cannot digest gluten, a protein found in grain such as rye, barley, and wheat. 
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    Vomiting
    Another prominent symptom is vomiting.  
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    Fatigue
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    Itchy Rash
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    A study found out that almost 17% of patients suffering from celiac disease might develop dermatitis herpetiformis due to lack of right treatment. Make sure you schedule an online appointment with your dermatologist or visit the nearest healthcare facility to prevent worsening of symptoms.
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    Sources:
    ncbi.nlm.nih.gov  Celiac.com ncbi.nlm.nih.gov  mendfamily.com