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  • Jefferson Adams
    Jefferson Adams

    Celiacs are Eating More Gluten than They Realize

      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 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

    Jefferson Adams
    Celiac.com 04/02/2018 - Exactly how hard is it for people with celiac disease to faithfully follow a gluten-free diet? Anyone who’s ever tried to completely avoid gluten for any length of time likely has a story to tell about accidental gluten consumption, and the consequences that follow. It’s not at all uncommon for gluten-free celiacs to be exposed to low levels of gluten that can trigger symptoms and cause persistent intestinal histologic damage.
    To gain an understanding of gluten consumption across a wide population of celiac patients, a team of researchers recently set out to determine how much gluten people eat when they are trying to follow a gluten-free diet. 
    The team included Jack A Syage, Ciarán P Kelly, Matthew A Dickason, Angel Cebolla Ramirez, Francisco Leon, Remedios Dominguez, and Jennifer A Sealey-Voyksner. They are variously affiliated with ImmunogenX in Newport Beach, CA, the Beth Israel Deaconess Medical Center at Harvard Medical School in Boston MA, and with Biomedal in Seville, Spain.
    The team began by analyzing data from previous clinical studies. That meta-analysis focused on data from a clinical study of gluten in stool and urine in celiac patients, a second study on non-celiac populations; and an analysis of data from trials for the investigational therapeutic latiglutenase. 
    As part of the stool and urine studies the team included controlled gluten challenges. They then applied a calibration factor that allowed normal ingestion of gluten to be computed from the urine and stool measurements. They determined gluten consumption by estimating how much gluten was eliminated from patients’ diets due to a trial effect that resulted in improved histology, even in the placebo group.
    Using the stool test, the team estimated the average inadvertent exposure to gluten by celiac disease individuals on a GFD to be about 150–400 mg/d, while they estimated the median exposure to be about 100–150 mg/d. Using the urine test, those numbers showed an average exposure of about 300–400 mg/d, with a median of about 150 mg/d. 
    Meanwhile, data analyses showed that celiac patients with moderate to severe symptoms showed that patients ingested substantially more than 200 mg/d of gluten.
    The data indicate that many gluten-free celiacs regularly consume enough gluten to trigger symptoms and perpetuate gut damage.
    Source:
    The American Journal of Clinical Nutrition, Volume 107, Issue 2, 1 February 2018

    Jefferson Adams
    Celiac.com 06/04/2018 - Rates of contamination in commercial food advertised as gluten-free are improving, but nearly one in ten still show unacceptable levels of gluten. As part of a government mandated food sampling program, the city of Melbourne, Australia recently conducted a survey of 127 food businesses advertising gluten-free options. 
    For the tests, government officers conduct unannounced site visits and take a sample of at least one food item declared to be gluten-free.  Ridascreen Gliadin R5 ELISA analysis showed that 14 of 158 samples (9%) contained detectable gluten in excess of the official Food Standards Australia New Zealand (FSANZ) definition of gluten-free.
    Nine of the 14 samples (6% overall) registered gluten above 20 parts per million, which exceeds the official threshold for foods labeled gluten-free in Europe and the United States. At one business, food labeled gluten-free registered above 80 ppm, even though they were asked directly for a gluten-free sample. These findings confirm the lack of understanding reported by many people with celiac disease.
    The good news is that rates of gluten non-compliance has improved over earlier audits, from 20% of samples in 2014 to 15% of samples in 2015. The survey team notes that one-third of the businesses in this study had previously been audited) and education seems to be paying off. 
    In one burger chain alone, four of five venues which were non-compliant in 2014, were fully compliant in 2015 and 2016.  The survey results showed that businesses that provided gluten-free training for staff showed 75% better odds of compliance. The overall good news here is that gluten-free compliance in commercial food businesses has improved steadily since the first surveys in 2014.
    One in ten odds of getting gluten contamination from food labeled gluten-free is still to high, but even though there is room for improvement more and more businesses are providing gluten-free training for their staff, and those that do are reaping benefits. Look for this trend to continue as more businesses offer training, gluten-free and celiac disease awareness increases, and more consumers demand safe gluten-free foods.
    Read more at: The Medical Journal of Australia

    Jefferson Adams
    Celiac.com 08/07/2018 - A new drug designed to reduce symptoms of accidental gluten ingestion in celiac disease sufferers has yielded some encouraging data. The drug in question is a monoclonal antibody designed to reduce adverse reactions in celiacs who are accidentally exposed to gluten. The results, presented at Digestive Disease Week, held in Washington DC from 2–5 June 2018, suggest that monoclonal antibodies could provide protection for people with celiac disease.
    Celiac patients on a gluten-free diet who randomly received six injections of a monoclonal antibody, called AMG 714, over a ten-week period, enjoyed a substantial reduction in intestinal inflammation. Over a ten week study period, celiac patients on a gluten-free diet received six randomly assigned injections of either a placebo, or of AMG 714 at a dose of either 150mg or 300mg. 
    Patients then underwent a dietary gluten challenge from week through until week twelve. As tested, the drug did not reduce damage to intestinal villi for either treatment group, which was the trial’s primary goal, but it did significantly reduce celiac-related inflammation and symptoms in response to gluten consumption.
    Patients receiving the highest dose of AMG 714 had no clinically active disease at week twelve of the study, and also had a significant improvement in self-reported outcomes, compared with the placebo group. No matter how diligently people with celiac disease follow a gluten-free diet, they can still suffer accidental gluten exposure ingestion.
    Treatments like AMG 714 could become important adjunct to gluten-free diet in for people with celiac disease, including non-responsive celiac disease.
    Read more in Pharmaceutical-journal.com

    Yvonne (Vonnie) Mostat, RN
    Celiac.com 10/26/2018 - Did you know that a new study shows people with celiac disease are more likely to suffer nerve damage? Jonas E. Ludvigsson, a clinical epidemiology Professor in Sweden, discovered that women with celiac disease are 2.5 times more likely to develop neuropathy or nerve damage. There is a real association between celiac disease and nerve damage. "We have precise risk assessments in a way we haven't had before" he stated last year. Yet even Sweden has its quandaries. 60% of women in Sweden who have celiac disease have neuropathy and they do not totally know why! Statistics vary from country to country, and even vary between specialists within that country. Nerve damage is no laughing matter, it presents with numbness and tingling of exterior areas (extremities).
    Basically, numbness in the nerve endings of the fingers and toes and other frustrating areas. Just try picking up pencils, or something hot out of the oven. If you do not feel the heat you will know that you may have nerve damage. Following a rigid gluten-free diet, however, can alleviate this problem to a certain degree, and that is why we keep repeating the mantra: “Eat Clean & Gluten-Free!” However, sometimes accidents happen, and people who have celiac disease, gluten sensitivity, or dermatitis herpetiformis get exposed to gluten.
    How to Recover From Accidental Gluten Exposure
    Kathy Holdman, M.S., R.N. and Certified Nutritional Therapist lists numerous ways to recover after gluten exposure. You need to take into account  the amount of gluten exposure, length of time from last exposure, degree of gluten intolerance present, health of the digestive tract, existing inflammation or infection in the body and overall health status. Some  people say they can recover in a few days, others say they may experience significant setbacks in their health that lasts weeks to months. For those with positive celiac disease it may take years for complete healing of the small intestine after gluten exposure, although "outward symptoms" may resolve sooner. 
    Nurse Holdman suggests the following 10 tips to help alleviate symptoms from gluten exposure, and hopefully speed up recovery:
    Drink plenty of water, and this cannot be emphasized enough. Water is an essential nutrient for every cell in the body for proper function. Many people live in a state of chronic dehydration, which of course results in constipation. Then they take something to rid themselves of constipation and take too much and lose potassium, magnesium and throw out the balance of the salts in their body. When you have celiac disease you learn something new every week. Last week an Internist told me, after incurring my second bladder infection in eight weeks, that it could possibly be from the diarrhea following being glutened, and not totally washing myself. That made me a little sick just thinking about it. But, she told me an interesting fact about urinary tract infections and celiac disease. Celiacs do incur more frequent urinary tract infections due to more frequent diarrhea, no matter how meticulously clean we are. Taking four or five "Craisins" with each meal several times a day can limit the amount of bladder infections. I told her that I was also taking Cranberry tablets and she told me to throw them out because they are "useless."  She said that you do not need to buy fresh cranberries, as they are  "sour and expensive." Just buy a bag of the dried Craisins and eat some either before or after meals. Ingredients in the pure dried cranberries helps prevent bladder infections from occurring. Studies done in several Nursing Homes where many incontinent patients lived were given five Craisins either alone or in a salad twice daily and the decrease in urinary tract infections was nothing less than amazing. Get extra sleep and rest. Sleep is the time your body repairs itself. Avoid strenuous exercise, (the type that causes you to sweat). Exercise in moderation is what I think she wants to tell us. Drink bone broth. It is rich in minerals and gelatin and other nutrients that are soothing to the digestive system and nourishing to the entire body.  Another health benefit of bone broth is hydration, and the more liquid intake the better. You can dress up bone broth with onions and garlic to improve the taste.  Take epson salt baths. They contain magnesium, a mineral that can help the body to relax. The sulphate minerals found in Epson Salts are detoxifying, and they can stimulate the lymphatic system and support the immune system. Nurse Holdman also urges us to take digestive enzymes which can help modulate the symptoms of celiac disease. Take digestive enzymes. If taken immediately following the accidental consumption of gluten, some people believe that digestive  enzymes can help to modulate the symptoms of celiac disease. It is well known that digestive enzymes soothe the stomach lining and ease the abdominal pain. Drink ginger or peppermint tea. They are both known to help relieve nausea and can be soothing to the digestive system. Drink a cup if you are having nausea or other gastrointestinal symptoms. Take activated charcoal. It is an over-the-counter-supplement that may be beneficial if taken immediately after an attack. It helps by binding with the offending food and preventing it from being absorbed into the body. This supplement can bind with medications so be sure to consult your licensed health care professional prior to taking it, especially if you take medications for other diseases or conditions.  Eat fermented foods. Who knew!? Possibly the Koreans and their staple Kim Chi, or the Ukrainians/Romanians with their fermented red cabbage coleslaw of course! Fermented foods are high in nutrients that nourish the entire body. Start out with a small amount of fermented food and slowly increase it. Drink nettle leaf tea. It is an antispasmodic with antihistamine properties. It can help relieve muscle and joint pain, and relax your body naturally. Neither gluten intolerance nor celiac disease are mediated by histamine, but some people report that nettle leaf can help relieve symptoms of rash and itching following gluten exposure. It is a gentle diuretic and can be detoxifying. So if you experience dehydration symptoms it is time to drink more water. Get acupuncture treatments. It may relieve inflammation, especially in the abdominal area, and it can be relaxing. Only you can tell how many treatments are beneficial, and you need to take into consideration the cost factor because most health insurance plans do not cover acupuncture. Tips to Help People with Dermatitis Herpetiformis Recover from Accidental Gluten Exposure
    A suggestion from Me: If you have itching from dermatitis herpetaformis, try Scalpacin. I have been using it for years and nothing stops the itching in such a short time span. Once the sores start to appear, even just a slight "itch" is like a doorbell warning you ahead of time. I apply Scalpacin lotion, which is not a cream, but is a clear liquid. At first it stings but that is how I know that I have an impending outbreak. It is a non-fragrant liquid. You can use it on your scalp without totally ruining your hair style. Don't wash you hair with it, search out the spots, or, if you have a partner, they may be able to help you with the sores in your scalp, and you can point out itchy areas. 
    For dermatitis herpetiformis itch you can also try a mix of baking soda and water by making it into a paste. This is not great for your scalp and hair, but it will ease the itching. It can be a little messy when it dries and the white powder flakes off on your floors, but you do not have to use it for hours at a time; it is a temporary method for temporary relief.
    You can also ask your physician if he or she will prescribe the prescription drug "Atarax" for you. It is a strong allergy medication and must be taken exactly as directed. It really helps the itch, but it can be sedating, especially when first trying it. Don't over-use the prescribed dosage. I would not suggest driving a car while taking Atarax, but if the itching, scabbing and bleeding have become so severe it definitely is the one allergy medication that helps with the itching from dermatitis herpetiformis. I have tried Benadryl, Claritin and other over the counter  allergy medications, and nothing works as well as Atarax.  Talk to your family physician about a prescription and read the instructions carefully.
    Hopefully these tips will prove helpful in the unfortunate event that you ever get cross-contaminated by gluten. I certainly hope this never happens to you!

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    Doritos does make a few gluten-free versions.     
    Just wanted to chime in. During my 2 plus years of healing I had joint pain and muscle pain with some of the nightshade mainly peppers and tomato. I stopped them. I can now eat them again. My theory is when my gut gets cc my holey gut dumps some of my food in my blood stream and my already ticked off immune system let's me know what is allowed. Apparently for a time nightshades  of potato, tomatos, and peppers were an issue. I was able to gradually introduce potatoes first and then tomatos, then
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