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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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    Guest Marlie

    Posted

    Krista, please may I make your words mine? Very good!

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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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  • 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.

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    J Clin Gastroenterol