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    • Hi JesLin! How was your trip? did you do well with the gluten free issue? I'm thinking in a trip to Nepal and Tibet also and I'm a little worry about the Tibet part. Could you please give me some advices? Thanks! Lorena
    • My daughter has Celiac disease and has been using a Nina sensor for the past two and a half years. I am a huge supporter of the sensor and feel like it has made a big difference in my daughter’s quality of life, and has certainly saved her from getting very sick in many situations.  A lot of the negative reviews about the sensor, including the Canadian Celiac Association’s statement against the Nima sensor, make it seem like using it puts you in an either/or position. Either I use discretion, ask tons of questions and do everything in my power to minimize my risk when eating out or eating manufactured products, or I use my Nina sensor and rely on a result that isn’t foolproof. Nima has always taken the position that using the sensor to test a product provides an additional data point in making a decision about whether a food is safe or not.  Before we purchased the sensor I read all of the information on Nima’s website as well as all of the positive and negative reviews. We went in with our eyes open, knowing that the sample we test might not represent the entire dish and therefore might still be unsafe. However we have not changed our previous behavior of asking all of our questions to ensure that we feel comfortable ordering that dish in the first place, and trusting that the procedures are in place to ensure it is being made in as safe a manner as possible. We then use the test as a last step before she eats it. We have also decided that we will err on the side of caution, knowing that we might get a “gluten found” test result even if the amount is less than 20ppm. The 20ppm standard was set based on the value of gluten that could reliably be detected at the time standards were set for what “gluten free” meant. To us, a 19ppm result is no safer than a 20 or 21ppm result, so we are ok with rejecting anything that comes back with discernible gluten in it. If you are not ok with that, then the Nina sensor might not be for you.  I could give you many examples of times that we have called a restaurant in advance to discuss if they could accommodate our needs, spoken with the chef to order our meal, and done all of the things that are recommended to people to make sure the risk of eating out is minimized to a point that we feel confident in the food we will be getting, only to have the result test positive for gluten. It is always difficult starting the conversation with the manager or chef after that point, but the outcomes have been illuminating. In one case the head chef found out that whenever the kitchen got too busy the dedicated gluten free fryer was used to handle the non gluten free overflow. He was very thankful that he was able to uncover what was a clear lack of understanding by the kitchen staff regarding allergen protocols. We have been pleasantly surprised by the interest shown in many restaurants to figure out why there might have been gluten found in the food, and in most cases positive changes came as a result. From our perspective we have learned a lot from the type of response we receive, and are much more likely to return to the restaurants that try to make it right than the ones that are dismissive of our concerns.  Without making this response too much longer than it already is, I want to share with you our anecdotal experience using the Nima sensor around the world.  - We have almost no “gluten found” results in countries that hold restaurants to a higher standard when it comes to allergen protocols. In the UK and Australia we are often met with incredulous looks when asking our barrage of questions before ordering in restaurants, with the response being, “Of course we take all of those precautions, or it wouldn’t actually be gluten free.” Our experience in N America has been that restaurants cater to a level they call “gluten friendly”, and despite going through the same precautions here, our tests are at about the 50/50 level for safety.  - Baked goods and take-out pizza from non-dedicated gluten-free providers are close to 100% gluten found for us (again only in N America) to the point that we rarely even try anymore, not wanting to waste the capsules.  Obviously, everyone is entitled to decide for themselves what level of risk they are willing to accept, as well as to what lengths they are willing to go to protect themselves. This is what works for our family, but only because we don’t use it to replace research, common sense and good judgement, rather to enhance it. 
    • FWIW, I think sometimes these renown medical groups aren't really any better than others in some areas. I'm from MN where Mayo HQ is, just as an FYI. I think generally Mayo is probably one of the best Cancer and Cardiology hospitals.  When it comes to GI they are still good but I went there for my problems and they didn't figure it out. I went to Minnesota Gastroenterology(MNGI) and they had it figured out within the first visit.  If you are in MN i'd check with MNGI, not only is everyone in the clinic a GI specialist but they have several Dr. that specialize in a specific GI condition including specialists in Celiac Diseae, Crohns...ect.  They also have their own pathology lab too and they are all specialists in GI pathology. 
    • Thanks to the above who responded to my post.  
    • A weak positive is a positive.  Toss in your intestinal damage and you have celiac disease!   A positive is a positive.  Like you are either pregnant or not.   My first GI said that I had a weak positive because I tested positive to only one of the celiac disease tests (DGP IgA) on the complete panel he ordered.  But I had a Marsh Stage IIIB per my biopsies.  Plenty of damage!  I also never had a positive on the EMA and TTG and they were run many times.  Within three months my life-long anemia resolved.  Later, repeat endoscopy/biopsies revealed healed and healthy villi.   Sometimes GIs or PCPs will say a weak positive if you are just out of range.  It could be just out of range for another autoimmune disease.  But again, in your case, you have intestinal damage.   Let me tell you, celiac disease is an easier diagnosis to have.  Allergic to milk....really allergic enough to damage your GI tract and you can die from exposures. Steroids are prescribed.   Celiac disease is not going to kill you fast, that is for sure.   Other things that cause villi damage require drugs like immune suppressors or chemo drugs.   https://www.mayoclinicproceedings.org/article/S0025-6196(17)30892-3/pdf I am sorry that your doctor was not very clear causing you to have doubts.   He may be waiting to see how you respond to the diet.   Get tested for allergies, but know that all allergy testing is about 50% accurate.  Know that you can have concurrent illnesses like Crohn’s or SIBO besides food intolerances when you have celiac disease.   https://www.foodallergy.org/life-with-food-allergies/food-allergy-101/diagnosis-testing/skin-prick-tests It is hard to accept a celiac disease diagnosis. Denial is part of the grieving process.  But the good news is that you can get well without drugs.  Just a dietary change that months later will seem normal.    
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