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    Full Gut Recovery Rare in Adult Celiac Disease Despite Gluten-free Diet


    Jefferson Adams

    Celiac.com 06/18/2009 - According to the results of a recent study, complete recovery of intestinal mucosa occurs very rarely in patients with celiac disease, despite adherence to a gluten-free diet.


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    Generally, when people with celiac disease go on a gluten-free diet, they can expect to enjoy some healing of small intestinal mucosa. However, new data casts doubt over how much of this benefit is experienced in adult celiac patients.

    In order to analyze the factors that influence histological outcome of a gluten-free diet in a large cohort of adult celiac patients, a team of researchers reviewed data on 465 consecutive celiac patients studied before and during the gluten-free diet.

    The team was made up of A. Lanzini, F. Lanzarotto, V. Villanacci, A. Mora, S. Bertolazzi, D. Turini, G. Carella, A. Malagoli, G. Ferrante, B.M. Cesana, and C. Ricci. The researchers made duodenal biopsies of subjects at diagnosis, and classified results. They found 11 cases of Marsh I, 25 cases of Marsh II, and 429 cases of Marsh III.

    After an average of 16 months on a gluten-free diet, 38 patients (8%) showed histological ‘normalization’, 300 patients (65%) showed  ‘remission’ with persistent intraepithelial lymphocytosis, 121 patients (26%) remained unchanged, while 6 patients (1%) showed ‘deterioration’.* Celiac disease-related blood tests were negative in 83% of patients with Marsh III lesion during the gluten-free diet.

    Researchers independently associated male gender and adherence to a gluten-free diet with histological ‘normalization’ and ‘remission’. There seemed to be no association between persistence of intraepithelial lymphocytosis and human lymphocyte antigen gene dose, or with Helicobacter pylori infection.

    From these results, the research team concluded that complete normalization of duodenal lesions is exceptionally rare in cases of adult celiac disease despite adherence to a gluten-free diet,  disappearance of symptoms, and  negative blood tests for celiac disease.

    Aliment Pharmacol Ther 29, 1299–1308

    *Author's note: Could such deterioration be due to undetected exposure to gluten over time?

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    Guest Gerta Farber

    Posted

    Certainly a valid report on this research, BUT it is highly unfair and even dangerous. We know that many FIRST recognized effects of gluten can be in other bodily areas, such as brain diseases! This report may cause assumptions by many that a gluten-free diet will not correct ANY symptoms caused by gluten! A very harmful omission and should be rectified by Jefferson Adams in some way!

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    Guest Ann in Pittsburgh

    Posted

    I wonder if some of the remaining damage is due to ongoing ingestion of other food items that can cause a similar but lesser reaction: eggs, dairy, soy, yeast, and others.

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    Guest John B. Symes, DVM (aka Dogtorj)

    Posted

    As much as we don't want to hear this kind of thing, I certainly believe it. Gluten is only one of the foods that damage intestinal villi, with casein (dairy), soy, corn and fluoride being other major contributors. And those with celiac disease are more likely to have problems with sensitivity to the others, thanks in part to Zonulin - that barrier-opening hormone released by the intestinal tract once enough villous damage is sustained.

     

    I'd like to see a study done on the rapidly rising number of people who are going GFCFSFCF. Then we would get a much better idea of just how much harm a trace amount of gluten is causing.

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    Guest Ignacio Abel

    Posted

    We just have to ask if gluten free is enough. Maybe it's not.

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    Guest Sandra Barwick

    Posted

    Don't shoot the messenger. This is a good report of interesting research. It says specifically that symptoms disappear. If symptoms have gone the body is healing somewhere.

    What it seems to show is that the gut is very slow to heal. They tested after 16 months and I think many of us know it can take several years - and that the hardest bit of the diet is the early bit, where you keep forgetting or don't realize it's in baking powder or chips or whatever.

    I wonder if they plan to test again in five years.

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    Guest Gloria Brown

    Posted

    Without description of what the patients consumed, this study is questionable. What did this group of people eat to qualify as truly gluten-free? Packaged foods overwhelmingly contain trace amounts of gluten, even those with gluten-free labeling. Therein could be the reason a "Gluten-free" diet for most Celiacs remains ineffective. Had this study been with a group of people who consumed only fresh foods and nothing packaged (including spices, teas, medications, meats, etc.) the findings could be useful.

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    Guest Stephanie

    Posted

    Interesting that the overwhelming majority of newly diagnosed celiacs in this study were at stage III damage - just goes to show how utterly the medical system is failing at diagnosing celiac disease before the patients are half-dead. Really a pity.

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    Guest katie

    Posted

    I have one word that explains why people don't heal: CROSS-CONTAMINATION! This is a HUGE issue still being ignored. As more people go gluten free, and instead of changing eating habits they just replace all those gluten carb foods with gluten-free---this will continue to be a problem. Until all the companies and food manufacturers are aware of the seriousness of Cross-Contamination from growing to shipping to storing to grinding----lack of healing will continue. The original 'healing' diet for Celiac was NO grains whatsoever. This is what lack of funding for study of a disease not cured by a pill does for us--------leaves people still sick and in the dark! Very sad.

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    Guest Brian

    Posted

    Data are data. Over-extrapolation by doctors of what they know to fill in their lack of knowledge about celiac patients like us, has caused many of us harm and decades of issues.

     

    The study looked at nothing by villi damage. While I have seen no supporting data, I suspect that the autoimmune diseases are the result of an overreaction to gluten in the gut or after leaking into the blood. So while villi damage likely means high levels of vitamins and minerals for me the rest of my life to avoid the clear expression of deficiencies I had before, I am OK with this. It works. It is like surviving a heart attack and managing afterward. It is not repairing itself to any great extent.

     

    The fact that my hypertension, arthritis, cluster headaches, fuzziness, anxiety, and depression all flare up with abdominal distress to trace amounts of gluten I finally track down in my food diary, says to me that avoiding gluten is paramount regardless if the villi are ever restored.

     

    Would have been nice if a normal gut was a possible outcome, but if it isn't it isn't.

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    Guest Leslie E Stevens

    Posted

    The canary in the cave: my daughter has "dh" (dermatitis herpetiformis) and we were shocked to discover that most foods/vitamins/supplements labeled "Gluten Free" ARE NOT.

    She develops excema within 20 minutes of eating contaminated food. It is almost IMPOSSIBLE to eat out without getting contaminated with gluten, even at restaurants with gluten-free menus. We have learned to only buy food/supplements that are labled "CGF" = Certified Gluten Free.

    The best that we can do is eat in our gluten free home, then we are all happy (the downside of contamination is also the dark psychological aspects that visits us... for those who don't

    have dh look for dilated pupils, and/or rapid heart beat/ depression/irritability, return of sleep apnea, dark eye circles....

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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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    Roy Jamron
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    Endoscopy 2006 July; 38(7): 702-707
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    Jefferson Adams
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     Am J Gastroenterol. 9 February 2010; doi: 10.1038/ajg.2010.10

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    Jefferson Adams
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    Jean Duane
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    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?