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  • Jefferson Adams
    Jefferson Adams

    Celiacs are Eating More Gluten than They Realize

    Reviewed and edited by a celiac disease expert.

      If you have celiac disease, you’re probably eating gluten more frequently than you realize, whether or not you have symptoms.


    Caption: Image: CC--jeffreyw.

    Celiac.com 02/25/2019 - Even when following a gluten-free diet, many people with celiac disease occasionally ingest small amounts of gluten in food. However, researchers don’t have much good data on how that plays out in real life. Testing patient stool and urine is an excellent way to measure the frequency of gluten exposure in celiac patients who are on a gluten-free diet. To get a better picture, a team of researchers recently set out to explore the pattern of fecal and urinary excretion of gluten immunogenic peptide (GIP) during a 4-week period in celiac patients on a long-term gluten-free diet. 

    The research team included Juan P Stefanolo; Martín Tálamo; Samanta Dodds; Emilia Sugai; Paz Temprano; Ana Costa, Ana; María Laura Moreno; María Inés Pinto Sanchez; Edgardo Smecuol; Horacio Vázquez; Andrea F Gonzalez; Sonia I Niveloni; Elena F Verdu; Eduardo Mauriño; and Julio C Bai. They are variously affiliated with the Dr. C. Bonorino Udaondo Gastroenterology Hospital, Buenos Aires, Argentina, Argentina.; the Farncombe Family Digestive Health Research Institute, McMaster University Health Sciences Centre, Hamilton, ON, Canada; and with the Research Institutes at the Universidad del Salvador, Buenos Aires, Argentina. 

    For their descriptive and prospective study, the team enrolled consecutive adult celiac patients who had been following a gluten-free diet for more than two years. All participants filled out a celiac symptom index (CSI) questionnaire to document related symptoms. Patients collected stool and urine samples for 4 weeks. The team designed the collection protocol to measure gluten excretion during week-days and week-ends. For GIP detection, the team used ELISA test for stool (iVYLISA GIP-S ®, Biomedal S.L. Spain) and point-of-care tests (GlutenDetect ®; Biomedal S.L., Spain) for urine. 

    The team found that, regardless of symptoms, celiac patients on a long-term gluten-free diet frequently ingested gluten, especially on weekends. The steady increase in GIP over the month-long study indicate that people may be less vigilant about eating gluten-free, especially on weekends. 

    This study indicates that many people with celiac disease are lowering their vigilance, and accidentally or deliberately eating gluten, whether or not they have symptoms. These results drive home the importance of constant vigilance for people with celiac disease.

    Source: Digestive Disease Week 2019


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    Excellent article! 

    I wish the Celiac community and restaurant industry would take cross contamination seriously.  A restaurant can put a gluten-free symbol next to whatever they want, but if the kitchen and staff are not aware of the negative impacts the prepping surfaces, cooking areas, ovens, hands, utensils ALL have on cross contamination then at best, everyone involved, is providing a false sense of accomplishment.  And how many times have we been received with glazed over eyes or looks of confusion when we asked about gluten free or informed them we have Celaic Disease?

    Something else interesting, the weekends are exposing those with Celiac to more gluten.  Why is that?  Most likely due to the craziness that kitchens experience during high volume hours.  Additionally, for those that drink at bars, how clean do you think the glasses actually are?  Do you realize that beer mugs/glasses are washed and rinsed in the same water as your wine and mixed drink glasses are?  Then what about stopping at your favorite ice cream shop on your way home, you get the simple chocolate scoop in a cup.  But what about the 'cookie-n-cream', 'cookie dough' or 'Oreo' that were all scooped before you showed up?  The scoop is rinsed in the same bin of water.  Then there's the late night pizza, cooked in the same oven as the non-gluten free pizza.  This list and possibilities are endless! 

    How do I know?  I've been sick more times than not when I ate out!  Even at well known establishments that were supposedly "safe" for Celiacs.  Too many times I was told, "don't worry", "I'll let the kitchen know" or "that dish is naturally gluten free".  Or I've chased app reviews all around town, to sometimes get, "everything on the menu is gluten free except ________."  And my all time favorite, "gluten friendly"! 

    So I just gave up eating out all together unless it is a dedicated gluten free establishment, and even then I tread with caution when it's a chain restaurant.

    The manufactured food industry is taking gluten-free and Certified gluten-free seriously, just wish the restaurant industry would.  On a side note, just watched a video about an Italian bread bakery that specializes in gluten free bread, and in the interview, she said if someone produced contaminated food they could go to jail:

    https://www.nbcnews.com/leftfield/video/italy-the-land-of-bread-and-pasta-goes-gluten-free-1423402051966  

    But yet in the States, it is Celaics Beware.

    Maybe one day, us with Celiac Disease could lead a normal life, but until then, I have a difficult time trusting anyone to properly prepare my food.

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    The last time I ate at a chain restaurant off a "gluten free menu" I ended up in the hospital for 4 days due to severe allergic reaction from gluten. That was several years ago and I don't miss them at all. I do eat at local restaurants that focus on gluten free and allergy concerns and I enjoy them with confidence.

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    I can no longer ignore the mathematical elephant in the room: the parts per million (ppm) issue.  In the U.S., at least, a food may be identified as "gluten-free" as long as the amount of gluten in a food or ingredient is tested to be at or below 20 parts per million (ppm).  However, this tells me nothing about how much gluten I may have just ingested after eating a bowl of dry breakfast cereal at home or a burrito dinner at a restaurant. Whether or not I get sick depends on the total amount of that food that I eat.  

    For example, Dry Breakfast Cereal A is tested and reported to have 20 ppm gluten or less.  Therefore, if one "kibble" of that cereal equals a million parts (assumption made for the sake of the example), then only 20 (or less) of those parts are gluten.  But what if I eat the recommended serving size of ¾ cup or (more realistically) 1 ½  cups of that cereal in one sitting?  Yes, I will have ingested quite a bit of gluten!

    Fortunately, I am not nearly as sensitive as many who have celiac disease.  But I will get sick if I eat a sufficient amount of food(s) reported to contain 20 ppm or less.  Along with all the other precautions I practice to stay gluten-free, I limit portion size of individual foods and total consumption amounts of more than one food (in a one day period) that are suspected, presumed or known to contain gluten at the rate of "20 ppm or less."  

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    Don't make the false assumption that a labeling regulation of 20 ppm means that foods with such a label will therefore contain 20 ppm, as this simply is not true.  If they do test over that level companies will face serious issues with the FDA, so it is in their financial interest to focus on staying well below that level. General Mills, for example, is refining their proprietary machinery to be at 10 ppm or below, and I believe they are now achieving this threshold.

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    Mr.Pep'r, I'm with you.  I happily ate gluten-free pizza at one restaurant for several years until one day I got one to go. Thank god I was at home when it hit me because I've never passed out from gluten before but I've never vomited that hard either. They later admitted that they had changed sausage vendors and the new guys put beer in their sausage. I just don't have the trust I used to that the kitchen will care enough to not make me sick.

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    Guest ANTHONY COLATRELLA

    Posted

    To DIANE RMD---20ppm = 20mgs of gluten per 1kg of that food, so to consume 20mgs of the gluten you would need to eat 1kg of that food; 1kg =2.2 lbs. so you would need to eat 2.2lbs. of that food----not likely, I hope.   a total of 10 mgs. or less of gluten is considered "safe" so if each of the foods you have eaten in a day is 20ppm or less as long as you have eaten less than 1.1 lbs. of food in that day you should stay below the safe level---at least in terms of long term small bowel damage and if the food is truly 20ppm or less likely avoid symptoms but of course this is much less predictable

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    Guest ANTHONY COLATRELLA

    Posted

    Also, an identical study to this one has already been published in the medical literature-AMERICAN JOURNAL OF CLINICAL NUTRITION, vol.107, issue2, Feb.1 2018---it was a sub-analysis of the LATIGLUTENASE study which unfortunately showed that this particular "glutenase" was no better than placebo in preventing small bowel damage from gluten. Using the same measures as in this study they determined that patients on a "gluten free" diet were nonetheless still consuming a mean of almost 300mgs of gluten per day! This amount is well above the 10mg/day level that is considered "safe". These data would seem to indicate a need for greater vigilance, less eating out and a pharmacologic adjunct to the gluten free diet--on which many research centers are at work---including another go around on the aforementioned Latiglutenase  

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    On 3/4/2019 at 12:31 PM, Guest DianeRMD said:

    I can no longer ignore the mathematical elephant in the room: the parts per million (ppm) issue.  In the U.S., at least, a food may be identified as "gluten-free" as long as the amount of gluten in a food or ingredient is tested to be at or below 20 parts per million (ppm).  However, this tells me nothing about how much gluten I may have just ingested after eating a bowl of dry breakfast cereal at home or a burrito dinner at a restaurant. Whether or not I get sick depends on the total amount of that food that I eat.  

    For example, Dry Breakfast Cereal A is tested and reported to have 20 ppm gluten or less.  Therefore, if one "kibble" of that cereal equals a million parts (assumption made for the sake of the example), then only 20 (or less) of those parts are gluten.  But what if I eat the recommended serving size of ¾ cup or (more realistically) 1 ½  cups of that cereal in one sitting?  Yes, I will have ingested quite a bit of gluten!

    Fortunately, I am not nearly as sensitive as many who have celiac disease.  But I will get sick if I eat a sufficient amount of food(s) reported to contain 20 ppm or less.  Along with all the other precautions I practice to stay gluten-free, I limit portion size of individual foods and total consumption amounts of more than one food (in a one day period) that are suspected, presumed or known to contain gluten at the rate of "20 ppm or less."  

    Remember, refined products, such as cereal, that are tested at under 20ppm gluten, are unlikely to contain pockets over 20ppm. That's because the products are made with milled and blended flour. Any contamination would be blended into the entire product, not simply hiding out in a corner waiting to make you sick. 

     

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    On 3/4/2019 at 2:08 PM, Scott Adams said:

    Don't make the false assumption that a labeling regulation of 20 ppm means that foods with such a label will therefore contain 20 ppm, as this simply is not true.  If they do test over that level companies will face serious issues with the FDA, so it is in their financial interest to focus on staying well below that level. General Mills, for example, is refining their proprietary machinery to be at 10 ppm or below, and I believe they are now achieving this threshold.

    Your point is well taken, as I have heard and read others make that serious mistake you caution against.  No false assumptions are implied, nor is there any mischaracterization of the meaning or value of product labeling in DianeRMD's comment.  The point of the comment was to correctly define what the labelling term "less than 20 ppm" does and does not mean. It does mean that the maximum "ratio or proportion" of gluten in the food is small enough for most (but not all!) celiacs to tolerate without getting sick soon after ingesting a normal serving size. It does not say what the "total intake" of gluten is for that same amount of food.  Therein lies the issue: the possibility that the total volume of gluten in all the food eaten at home and/or restaurants throughout the day may be enough to surpass some individuals' tolerance thresholds for getting sick.  This is important for ALL celiacs to keep in mind: those who are very sensitive don't want to get sick; and those who have high thresholds, because their health is still seriously impacted even if they are unaware of having ingested gluten.

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    As @ANTHONY COLATRELLA  mentions above your post, this limit is set per kilo of food. So there cannot be more than 20 ppm per kilogram of food. So you, IF a food does have 20 ppm, you would need to eat 2.2 lbs. to get 20 ppm. This is not likely to happen.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He 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 SF 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.

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