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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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  2. Our doctor ordered the Prometheus Celiac Plus test for us. It is some sort of in depth celiac blood test. This test report showed which celiac gene my daughter has. I think you can ask your GI for a celiac blood test with EMA. When I asked for the EMA test, we got this Celiac plus results back. I believe Prometheus is the name of the lab. Our insurance paid for this test. If your insurance won't pay for it, I know there is a lab in Colorado that offer this test for a few hundred bucks. You have to google for it. I forgot their name.
  3. Why? Some 35% of the population carries the genes that could develop into celiac disease. But only a few actually develop it. It is used to exclude celiac disease and not to diagnose it. There are some outlier genes too that have been discovered recently, so the gene test is not perfect. My daughter has tested negative on the antibodies test. She will have to get retested in the future. But we will not get the gene test. It may impact her ability to get life insurance or maybe even health! Just something to consider.
  4. It will turn around, but it probably is going to take more time. Yes, adhering to the gluten-free diet is critical, but what doctors fail to tell you is that is can take time for antibodies to decrease. For some it is a few weeks and for others months to years. It sounds like you are doing everything right. Remember, her gut is damaged and eating anything can hurt to digest. You might consider taking her off dairy for a few weeks until you see improvement. Then add back in starting with products with the least amount of lactose (e.g. yogurt). Many celiacs are temporarily lactose intolerant. It might help with the nausea. When I accidentally get exposed to gluten, I stick with soups and stews, even cooked fruit, like applesauce because it hurts to eat! Are you sure the medication she is taking is gluten free? Did you call and confirm with the manufacturer? Did she have nausea befor she was diagnised? The side effect of this medication is nausea. Did the GI prescribe? Hang in there!
  5. My 10 year old daughter has been on the gluten-free diet for 6 weeks, and she's feeling worse than before the diagnosis. She has very little appetite, has frequent nausea in the evening, and has lost a pound or two that she really can't afford to lose. Our whole household is gluten free except for a few prepackaged items kept in a different room, so I think there's very little chance of cross-contact. She has been put on cyproheptadine to increase appetite and is trying valiantly to eat more, but she's just not hungry and it's very stressful for her, and all of us. She's eating peanut butter, pediasure, avocado, cheese, meat, and all the other calorie-dense foods we can think of. No oats, not too much processed food. Can anyone give us suggestions or hope that this will turn around?
  6. Yes, the beers which I'm referring to had barley listed in the ingredients panel. For example, this was one I was looking at made from malted barley. Here in Europe things are slightly different. As long as the 20ppm test is passed beers can call themselves gluten free, including ones which you would see called gluten removed. So they share the shelves in the Free From section with the naturally gluten free beers you refer to. To clarify, I'd be relaxed drinking a beer which never had gluten in it, such as the sorghum based beers which share the shelves with the gluten removed ones over here. I'm nervous about those where the gluten has been removed during the brewing process. This is in part due to a strange reaction I had to another gluten removed beer marketed as gluten free back when I still drank.
  7. Today
  8. Is this something that you can get done at th GI? Who administers this test? I definitely would like to get this done. I think I’m going to get my son tested too.
  9. I myself also have EOE and Celiac. Before my diagnoses I was getting bread and meat stuck in my esophogus. It wouldn’t pass. It got so bad when I ate a ribeye. It sat in the esophogus for 4 hours. Eventually I was able to vomit it up. It was followed by blood. I then went for a biopsy a month later and was diagnosed. I cut out most of the gluten out of my diet. But I also had to go see an allergy doctor and I have a soy and nut allergy. He explained that the restriction in the esophogus is a delayed reaction to either the soy, gluten, or nuts. So I try to avoid those foods as much as possible. I carry an epi pen with me when I go out to eat.
  10. My biopsy showed Villi damage in the small intestine. It was followed up with blood work. My GI was frustrated with me when I started questioning her. She couldn’t even explain the results to me. She just circled positive and left me hanging. Can anybody explain how my results look? Am I definitely positive? Endomysial Antibody Titer 1:80 titer transglutamine AB, IGA >100 U/mL Immunoglobulin A 228 mg/dl
  11. My daughter was diagnosed with celiac in 2014. She never had a problem with gluten, and she is still a silent celiac. But she was formally diagnosed with blood test and biopsy. So, having no "problems" with gluten does not necessarily mean you are not celiac. I too, did not want to accept that my daughter has celiac, and we did a DNA testing, and found that she does carry one of the celiac genes. So, if you do not want to accept celiac (or just very curious), you can get a dna test to see if you have one of these genes. I was told that people without one of those celiac genes can not have celiac.
  12. Download the app "Find Me gluten-free". It was a life saver when I went on a road trip. You can scan the area you are in for all of the nearest safe restaurants. I only go to the ones labeled "Celiac Friendly" , but that's up to you. Make sure you read the reviews and look at the ratings. Majority of popular restaurants are not safe. I have found some local restaurants that I enjoy, so ask around in your community. I usually feel safe eating at Chipolte, because I watch them prepare everything right in front of me. If you tell them you have a gluten allergy they will wash their hands, change their gloves, change out the spoons for all of the ingredients you want, and get new bins of cheese. Just make sure you watch the whole time. I have also eaten at Five Guys several times. Their fries are usually fried in peanut oil and do not have any coating, so if they change their gloves they should be okay. I usually get a hamburger on a lettuce wrap instead of a bun and ask them to keep it separate as they make it. Just like with Chipolte, you can watch everything they do. I always stand right by the counter and watch them make my food to look out for possible cross contamination. They usually are very careful, but you do have to be very aware and make a decision based on how conscious the workers seem. Mellow Mushrooms also seem to be in many states. All of the locations I have been to have had gluten free options and dedicated kitchen space. These are some of the restaurants that work for me, but it is different for every person and every circumstance. The most important thing is to be safe. Always ask a lot of questions. I have decided not to eat at places before because of the way a waiter has answered a question about their procedures to reduce cross contamination. I will also skip out on eating out if the place is busy. No matter how careful they say they will be a kitchen is a busy place. If the restaurant is packed it's better to be safe and not risk it. I hope you find some places to eat out that work for you, but the truth is a lot of the time you will just need to bring your own food or eat at home. Your health is more important than eating out. It gets easier and you will learn what is safe and what works. Good luck!
  13. Halloween

    Oh, I missed the part about Canadian candy. Maybe you can buy some American candy on line - then you would know it's safe. Can you buy American candy on Amazon? I buy everything on Amazon! Can you call the Hershey's in Canada and ask them? Pick your favorite candy or two and research it? Just a thought....
  14. Actually, an endoscopy refers to any scope inside the GI tract. An esophagoduodenoscopy refers to a scope in the upper GI tract - esophagus, stomach, duodenum and a colonoscopy is a scope through the colon. Typically, both are done when the diagnosis is blood in the stool as the blood can originate anywhere along the GI tract (or even in the sinuses/nasal passages). Typically, they are done at the same time to avoid repeat anesthesia, prep etc - if you need both, of course. You do have my curiosity peaked about "gut bacteria" test that tests for RBC. I am not sure what kind of test you are referring to.
  15. Halloween

    I wish there were comprehensive lists for candies sold in Canada. Every list I come across is US based. Also, apparently, not all similar candies contain the same ingredients. i.e.Smarties in Canada contain gluten, those in the US do not. No idea why
  16. You can get an enodscopy at the same time as the colonoscopy. Endoscopy is usually to diagnose Celiac. Colonoscopy would be to see why there is blood in your stool. I thought the blood was in your stool? Not sure a GI doctor will care about most of the " tests" that non- medical people run on you.
  17. Thanks both of y'all. Do know why I would get an endoscopy over a colonoscopy? Would it help if you knew the gut bacteria test I had ( this is where the red blood cells showed up)? And yes I have an Endo but I'm getting a new one next month who takes insurance!
  18. Old recipe from my books Grain Free Chocolate Pumpkin Brownies 120g almond butter about 1/2 cup 120g pumpkin puree about 1/2 cup 1 flax egg (1tbsp ground flax 3tbsp water mixed and left to thicken) 1 large egg should work 120g Maple or Sugar Free Maple Lakanto 20g cocoa powder 1/4 cup 2tsp vanilla extract 1/2 tsp baking soda or 1 tsp Ener-G Substitute Optional Nuts or chocolate chips to stir in or sprinkle on top 1. Preheat Oven to 350F grease a 8x8 pan or line with parchment paper 2. Add all ingredients but the optional nuts/chip to a food processor and process on high until smooth 4. Pour into pan, spread with a spatula and tap on a hard surface to level out, add nut or chip topping 5. Bake for 25-30mins
  19. Halloween

    There's so much candy that you can eat. M&Ms (except the pretzel), Butterfinger, Skittles, Starburst, Hershey's kisses, Reese's and Reese pieces.... https://www.verywell.com/gluten-free-candy-list-562806 You do have to be a bit careful though with seasonal varieties which may be made on shared equipment. Check the above list which is pretty thorough. Happy Treating!
  20. US needs to do this, we also need to have the FDA crack down on foods that say gluten free but are not, or are produced in the same facility with possible contamination. So tired of seeing "gluten free" read on the back. "Manufactured on/Packaged on equipment that handles wheat, etc."
  21. Karen is correct. The blood in your stool justifies a GI appointment. What if you have Crohn's or ulcerative colitis that is going untreated? It could even be something more serious. You definitely don't meet the criteria for Celiac at this point, but that doesn't mean you don't have it. 10% of celiac patients are seronegative (antibodies are negative but they still have the disease), so it sounds like you need an endoscopy anyway (due to blood in your stool). You can do a gluten challenge for 2-4 weeks before your endoscopy and they can answer both questions at the same time. Good luck!
  22. Hi Jennie- I'm sorry you feel so miserable. Do you have a copy of the labs results? That might help shed some light on how best to make your plea to the GI to get you in sooner. Regardless of whether you have celiac or not, it sounds like something is going on. There are several steps you could take depending on the results. 1. Labs are really negative- work with PCP on other possible diagnoses, keep a food diary and symptoms diary and try to pin it down yourself, go on a gluten free diet and see if that helps your symptoms (but if it helps, you will have to do a gluten challenge in the future and sometimes the reactions after being gluten-free are more severe) 2. Labs are really positive and the GI was wrong - send a letter to the GI doc and he sees his mistake and makes you an appt next week or go gluten free until 2 weeks before your appointment, then start a gluten challenge until your scope. Good luck!
  23. Although there is no known cure, the treatment for the disease is a gluten-free diet, which can help manage symptoms. This includes avoiding wheat ... View the full article
  24. "October 20, 2017 (Mississauga, ON) The Canadian Food Inspection Agency (CFIA) has made an announcement that the words “gluten-free” will be removed from all Cheerios package sold in Canada by January 1, 2018. The Canadian Celiac Association first objected to the claim in August 2016 and strongly recommended that people with celiac disease not consume the cereal, even though the box was labelled “gluten free”. The announcement came in a letter addressed to a Canadian consumer who was one of many customer complaints to be filed against the products......." https://www.celiac.ca/gluten-free-claim-removed-general-mills-cheerios-sold-canada/
  25. If you were gluten-free for months before the blood work, it should be negative. It is meaningless as a test for Celaic at that point. IF you have been eating gluten for the last 2 years, keep eating it and get a new blood test.
  26. this article made no mention of "gluten free beer". There is no reason to think that they are not actually gluten free as they are made with only gluten-free ingredients. This article is about beer made with barley. These are not gluten-free beers but often called "gluten reduced" or "gluten removed" in the marketplace. They are not legally allowed to call the beer gluten-free in the US.
  27. Hello, i need some input. Two years ago I had an upper endoscopy with 6 biopsies showing some interepithelial lymphocytes and shortened villi so I was sent for blood work which came back negative but I had been on a gluten feee diet for 2-3 months prior to bloodwork. What are the chances I had a false negative with the blood tests? I’ve now been on a gluten free diet for 3 days and the change in my intestinal issues is remarkable. Painful joints feel slightly better too. What should I do? Oh, I also carry a gene which increases the likelihood of celiac. Should I go back to eating gluten and ask for the blood tests to be repealed ??? thanks; Sarah
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