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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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?  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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  1. 4 points
    Bring your own food is my advice. I don’t think the host will be offended if you explain you have an autoimmune disease and must avoid certain foods. Profusely thank her for the invitation, gush about her house, gloss over the food stuff like it’s no big deal and move on doing what you need to to remain healthy. If we don’t focus on the food I think it helps others ignore it too. Dazzle them with your wit and personality because that’s what makes you awesome, not what you can or can’t eat. Make your family remember how lucky they are to have you. Don’t fight over food unless they are actively causing you harm through cross contamination. Do what needs to be done to keep healthy without apology because you aren’t affecting them by watching what you eat and bringing your own food.
  2. 3 points
    Obviously, you have a lot more issues with him than just this. I feel bad for the kids as an early diagnosis could be so helpful to their current and future health. If it were me, I would get another doctor and get the ones with the obvious issues tested. It would be nice if he agreed, but if I think it's for my kids health and future success in life, I don't care what my husband thinks. You can eat gluten-free without buying expensive gluten-free packaged products. Meat, beans, veggies, fruit, dairy , eggs, rice, Chex cereals, plain potato chips, etc are al naturally gluten-free. It might take a change in what you fix, but, except for gluten-free pasta, my hub and I eat mostly like that. I say potato chips and Chex because you can make some great chicken nugget things with them. you are right that eating gluten-free usually makes the Celiac tests negative. But if you can't or won't test your kids, maybe it is best to make them gluten-free to stop some of the damage. In a few years, as adults, they can get tested . There are tests for Celiac being developed that don't require eating gluten or much gluten.
  3. 3 points
    Hey, this is the place where you can whine all you want! We get it! I am so sorry that your family is not supportive. Do they know that celiac disease is genetic? That they can be asymptomatic and still have celiac disease? I am also sorry that you were glutened! You need to stand up and advocate for yourself. Consider joining a local celiac group for support. I dine with my family. I squally order a drink. For a while it drive my parents crazy, but now no one cares. Better to be healthy than indulge in gluten! Be sure you take food with you. I can tell you that when I open my cooler at a high school football game, the people around me are envious. My own gluten-eating family begs for additional slices of my gluten free cakes and other goodies. My daughter does not have celiac disease, but her friend does. For prom, the group is are going to a restaurant that will accommodate her celiac friend and a vegan. How cool and supportive is that? Be annoying! It is your right to maintain good health! Good luck in your upcoming finals. We start University applications soon!
  4. 3 points
    Welcome to the board. You only need one test to be positive to have celiac. In fact you can be negative on all blood tests and still have celiac! Your doctor seems to be unaware of this and should have had you get an endo after they had that positive test. Do be sure to keep eating a regular gluten diet until after your endo. Also make sure they are taking the biopsies of the small intestine they need to take for celaic. They should take at least 6. Keep in mind that damage can be patchy and missed. After all celiac related testing is done get onto the diet strictly. Go with whole foods for a bit. Limit dairy and don't try gluten free oats until you are well healed. The gluten free lifestyle can take some getting used to and we are here to help in any way we can. Be sure to read the Newbie 101 thread as it will have a lot of info to keep you safe. Enjoy your favorite gluten foods over the next couple weeks. Have some puff pastry for me. It is the only thing I haven't found a gluten free replacement for but most other stuff like pizza, artisan breads, cakes and cookies etc have good replacements to try after you have healed a bit. There is a light at the end of the tunnel but it can take a bit of time to heal. Be patient with your body and I hope your constant pain and D resolve quickly.
  5. 2 points
    I had no symptoms. I'm left with permanent kidney damage. You also need a new doctor. All this is contrary to everything we know.
  6. 2 points
    I tried to tell myself for a long time that I could eat out and just make sure what I ordered was gluten free and tell the kitchen. It doesn't work. I've stopped going out to eat altogether unless it's a place 100% gluten free. You are right, the only one you can trust with your food is you. My family tries to offer to do gluten free stuff for holidays and such; problem is it's hard enough for me to make food for me and they don't have the knowledge and awareness that I do. I bring all of my meals for family events and if I bring something there to "share" I make sure to be the first to take food or put mine completely separate. Others walk by and stick a cracker in a dish of dip not even realizing it's now off limits for me. It's tough but you do adjust and it's so much better then being sick.
  7. 2 points
    I have made sure he has his own storage containers for left overs and what not. Along with his own condiment bottles. I did happen to buy a four-door cabinet like thing to where the top two door shelves are all for gluten free. I mean I am obviously concerned for his health and safety. But our thing was is that living an apartment above a garage it's very limited on space so we are trying to make do with what we can and how we can do things. And you all have been so very helpful in so many ways and easing my mind by the helpful tips and tricks you all have given me. I want to thank you all from the bottom of my heart.
  8. 2 points
    I agree with the others. Here is my story..... My hubby went Gluten Free some 17 years ago per the poor advice of his GP and my allergist (they should have ordered a celiac screening). The gluten-free diet worked. Then 12 years later I went in for a routine colonoscopy (cancer screening, yeah...I am over 50), and the GI told me that he was going to test me for celiac disease due to my anemia (no GI issues). I was scoped from both ends and the rest is history. My hubby will say that I have had way more support from family, friends and medical. Yes, medical! However, like you, he refused to do a gluten challenge. We do need him to be able to function as we like paying our bills! My diagnosis has made it easy for our daughter to get regular screenings. It also made it easy for me to get a repeat endoscopy which found another autoimmune disease, but also found that my small intestine has healed. So, the choice is yours to make. Only you and your doctors know what is best for you.
  9. 2 points
    First off you might want to get tested for Celiac disease, you will have to eat wheat for 12 weeks prior to the testing. Then the following endoscope. Second even if you test negative the gluten free diet obviouly is helpful for you. Here are some links regarding testing and food intolerance issues. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/ https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  10. 2 points
    I did a foray into the genetics of celiac disease after getting my HLA DQ screening done. It seems that the assumption that celiac disease is a "European disease" is more of an artefact of scientific racism/bias; white people have historically done most of the science (and still do to some extent), and so focus on their own populations a lot and so a confirmation bias exists. This has lead to the assumption that other ethnic groups are less susceptible. More recent screening has revealed that celiac disease is actually similar in terms of frequency in North Africa, the middle east and Pakistan/northern India. The highest rate of celiac disease is actually the Sahrawi ethnic group (Africa)! The common thread linking all these regions is early historical adoption of wheat as a staple grain. Presumably, the gene and/or the disease played a useful role in evolution in wheat-based societies at some point. Depending on what your specific ancestry is (East Asia is an ethnically diverse area), it's perfectly reasonable that you have celiac. Articles talking about non-European celiac disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264942/ https://www.ncbi.nlm.nih.gov/pubmed/20639708
  11. 2 points
    Rituxan is not chemotherapy, it is an antibody treatment. I am well versed in this as my co-worker has ITP and has received Rituxan before when his platelet counts have gotten too low. It is NOT a cure for any autoimmune disease. It knocks it into remission for awhile. Some people have longer remissions than others. They only use this method of treatment in extreme cases of any AI disease/cancer when you get close to dying. Like most drugs, it has serious side effects that can be somewhat counteracted with other drugs before the infusion but I would never classify this as a safe drug. It's immunosuppressive so does come with risks. For those who think that this can cure Celiac or knock it into really long term remission.......no, it won't. There is no recourse except a strict gluten-free diet, which is much better at giving us complete remission than Rituxan. For those who do not do so well on the gluten-free diet, there are reasons for that which can be addressed by the medical community. It might even include a few treatments of Rituxan to keep someone from death's door, until they get better enough to deal with the AI problem in another way (which is what they do for ITP) but anyone with Celiac who receives this treatment WILL eventually become symptomatic for Celiac again, if they continue to eat a gluten filled diet. I can actually see the logic of using this treatment on people who almost reach the point of no return to stabilize them to save their life (my co-worker's experience) but for someone with Celiac/Dh who makes a point of letting people know they have a master's degree in a science field while insisting this treatment means they can and do eat gluten makes me go like this:
  12. 2 points
    Positive blood trumps negative biopsy. Go ahead and do the diet strictly. The elimination diet may be helpful in picking up any other intolerances you may have but be aware that some of those may resolve in time as you heal. Hope you are feeling better soon.
  13. 2 points
    The "Fasano diet" is a diet that is used for people who do not seem to be responding to a gluten-free diet. This is done before resorting to medications that have their own side effects. I am sure you probably did that for a few months. You may just have not heard of the name "Fassano diet". Dr. Fassano said at a conference he was speaking at that he would prefer people don't blame it on him! lol Towards the bottom, this has an explanation of the foods allowed: http://www.todaysdietitian.com/newarchives/0816p14.shtml
  14. 2 points
    I have to comment on this -"You cannot have DH without Celiac Disease. It stands to reason that if the DH is gone, so is the Celiac, because Celiac drives DH. " While it is true that you cannot have DH without Celiac....you can have Celiac without DH. Getting the Dh under control does not mean that Celiac is gone. You still have Celiac and, from all the info I have seen, the DH can come back with gluten in the diet. Celiac does not always manifest as DH. A few drugs can suppress the immune response to gluten, but taking these immune system suppressing drugs for life instead of a gluten-free diet? I am not sure we have quite gotten that figured out yet. I know there are tests and studies on-going to find a safe way to do this.
  15. 2 points
    @Docsgirl, From my perspective, the only bullying going on in this thread is from you. Ravenwoodglass is only rebutting some of your abrasive comments. I think she is trying to make sure that future DH suffers who read this thread will make every attempt to avoid gluten before trying drug treatments. Refractory celiac disease and/or DH is very rare. It sounds like you exhausted all common DH treatment possibilities. Dapsone, not only failed to treat your DH, but caused you serious injury (fortunately, it appears to be reversible). I do have some questions, because, like you, I have an interest in celiac disease. Did you attempt the “Fasano” diet at any given time? Did you ever consider a gluten free household? Did you eat only certified gluten-free foods? It seems like current research is indicating that far too many of us are getting gluten exposures despite our very best efforts. Again, I do not think anyone is bullying you. Take a moment to read what is written. It is unfortunate that communicating online can cause many misunderstandings. I know that many of my posts are not just directed to the Original Poster, but to a larger audience.
  16. 2 points
    I don't think Squirmy was being rude, either. There seems to be this pervasive attitude going on today against people who adjust well to challenges in their life. Couple that with people who probably have additional health issues, along with Celiac, and aren't healing as fast as they think they should and this is what you get. Whether you like it or not, Celiac's have to take charge in order to heal and that may bring on resentment from family members. I had extreme resentment from family members and while it was a bit deflating in the beginning, I moved on and if they don't like the way I manage my diet, that's their problem. I have brought my own food many times to gatherings and never think twice about it. If you are having anxiety about this, some time with a counselor may be a good idea. A good one can do wonders for you. It might also be that the anxiety is a result of not being healed yet. That will go away with time. I have a 91 year old mother in law who happily eats gluten free everything at our house. She always shows gratitude and compliments me on my meals. Never a word of negativity has ever passed her lips. She understands the importance of the diet and respects that. If only the rest of the gluten eating world had her attitude, things would be easier for us, but family push back can be dealt with. You have to learn to stand your ground, without all that anger. I realize that anger is part of the grief process but don't let it consume you. I am pretty damn sensitive myself but am doing extremely well after 13 years gluten-free. I no longer consider myself as someone with a weird diet and do not feel socially ostracized. That will come with time.
  17. 2 points
    Waffles are often not that crumby or sticky, bread on the other hand can stick the mesh and leave crumbs more. Toasters are cheap if you want to play it safe, or use toaster bags for awhile, 500F can destroy gluten...unsure how hot those get. It is easier the manage the diet the first few months and makes healing faster to use whole foods only and nothing processed. When foods are only 1-2 ingredients you do not have to worry that much about missing something in the long ingrident list also. Here are some helpful links since you mentioned she was recently diagnosed. https://www.celiac.com/forums/topic/91878-newbie-info-101/ https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/
  18. 2 points
    After today I feel the need to share this story, as many know I suffered trying to live life with my family after diagnosis, they tried a bit but overall they would not give up gluten and were....ignorantly hazardous with food and making me sick. I was at the time...suffering from the mental effects of gluten with loopy thoughts, anxiety, going completely hyde mode and having fights with my parents and breaking things, punching walls, and at points banging my head on walls trying to get my mind to stop looping and work right while dealing with constant other issues. I burned bridges and moved out, I spent the first year trying to be self supportive...it was harsh, I was at some points stealing produce, eating acorns, learning what local flora was edible etc. I then started getting help from my dad when bake sales were down, starting doing better with my bakery. Starting 2-3 years ago, after my grandparents had a death on each side...my parents stopped doing Holiday meals as much with extended family. I took this upon myself and started making gluten free and safe meals for me and inviting them over. This Easter was a huge success, I even had my mother come and help me with making Easter lunch. We talked alot, I asked her how she felt when she used to cook with her late mother for the holidays....I told her I feel the same when she comes over and helps me out and I want to do it more. It was emotional day, a re-connection with family, a start of new traditions. My mother is recently dealing with many of the things I struggled and struggle with....she recently started having allergic reactions to corn, she has bloating and diarrhea daily....and is considering getting tested for celiac and now having sympathy for the issues I have dealt with for years. Family changes and if you believe in god or some form of karma....it really does work in some way down the road. Familes if you keep trying with eventually come to some kind of acceptance or compromise, even have karma like results in some issues you might find. Just give it time, as mentioned by pika Is very true, but being around something for awhile humans can be come acceptive of anything good or bad and work it into their daily routine. PS I will be posting my dinner set up in the Easter Post in a bit.
  19. 2 points
    You are justified in your feelings about coping in a glutened world. It took me about a year to put my foot down in my own home and make it gluten free after others mishandled thier gluten foods in the kitchen. Iwish they had cared enough to do it for me but that is my lersonality type not theirs. Dont get me wrong, they love me but i have concluded that humans are selfish by nature and adverse to change. Its scary for us and for them when a disease enters thier world that changes life. I was not good at standing up for myself but i am a survivor and i adapted. The hardest thing so far has been a friend, also Celiac, who pressures me to be a foody. We have limited communication. Love is tollerance, faith and respect for anothers boundries. I know who truly loves me and limit exposure to those who dont.
  20. 2 points
    If it makes you feel any better, a recent study indicates that you are probably not crazy: https://academic.oup.com/ajcn/article/107/2/201/4911450 If you don't have time to read the whole thing, basically the "average" compliant celiac accidentally consumes >200ish mg of gluten in a day. The recommended max (to avoid significant intestinal damage, cancer risk etc.) is 10 mg per day. Kind of surprised no one has posted this article... but then again, it's easier to bury your head in the sand than to perhaps consider that what you already find difficult/restricting may not be entirely adequate. I'm betting that >200 mg adds up from small exposures in poorly controlled shared kitchens, occupational exposures, large quantities of gluten-free foods near 20 ppm, personal care products that you aren't supposed to eat etc. Those with only intestinal symptoms (or perhaps no symptoms) rely largely on imperfect diagnostic tools (endoscopy, bloodwork) to assess how well they are doing periodically - those with DH just need to strip naked and take a look in the mirror and can do so every single day. Anyways, I agree it sucks to be gaslighted by fellow celiacs and doctors on the issues that you described. Scientific evidence in the area of practical lifestyle decision choices for celiac disease is limited, and I think more people need to remember that when they make definitive statements.
  21. 2 points
    I personally do not think the Squirmingitch was rude. Like her, I find it hard to imagine that someone can safely prepare food when they do not have celiac disease (or NCGS) or live with someone who has celiac disease regardless of family status. The risk is too great for me. I am sad that I have had to give up the convenience of easily obtainable food that the majority of the population enjoys. I feel like Ma Ingalls (except I have a gas stove and not a wood burning stove) cranking out three meals a day for my gluten free family on top of my full time job and volunteer work. It can be exhausting! I also end up hosting most holiday functions as a result because I want my hubby to be able to enjoy his food. For me, it is not as important. I have learned that it is being with family that counts. Did you read Squirmingitch’s link? Did you see that she has suffered from the hellacious DH rash? Six months of autoimmune hives that I experienced last year, was a piece of cake compared to what DH sufferers must face. At least antihistamines helps relieve my itch. But I do get the anxiety. Mine appears when I have had a gluten exposure. I know you have had celiac disease since 2010 and are probably more knowledgeable than me about the diet, but when was the last time you had your antibodies checked or a follow-up endoscopy? Have you developed additional autoimmune disorders that could be related or contributing to your social anxiety? This recent article states that some 70% of celiacs are not healing due to gluten exposure despite being strictly gluten free. It also talks about social isolation too. https://www.allergicliving.com/2018/03/14/inside-the-race-for-a-celiac-disease-treatment/ Sadly, recent research is discovering that our “safe” gluten free food sources may not be so safe. https://www.glutenfreewatchdog.org/news/significant-study-published-on-the-amount-of-gluten-eaten-by-folks-with-celiac-disease-on-a-gluten-free-diet/ So disheartening! You sound like your job is emotionally draining. Perhaps, time for yourself is needed. I hope that you enjoy your Easter at home with your daughter. Savor it. Life is short, but you already know that.
  22. 2 points
    My goodness, the whining! This is our disease. It is up to us to keep ourselves safe by being responsible for our own food whenever & wherever we go. I would never ask someone to get special food for me to have at their house. Taking that one step further by asking someone, even my sister, to ask the hostess if she will get foods specifically for me sounds even more ridiculous. As ridiculous as making it mandatory for restaurants to have one gluten free option in their menu. Talk about feeling like you're entitled! Why do you people think others are supposed to take care of your food for you? Would you also think that diabetics should be provided insulin when they go to visit people? Should insulin be mandatorily provided at interstate rest stops? Pretty absurd when you look at it that way isn't it?
  23. 2 points
    She has a good relationship with her MIL. I guess I would trust plain steamed rice and steamed veggies, but perhaps I shouldn't. Eating at family gatherings has become very difficult for me. I give up. My sister is recovering from breast cancer and she is saying things like "at least celiac isn't deadly." I think she is feeling sorry for herself. I have tried my best to be there for her but after me asking about the food and explaining my emotions of feeling isolated, she blurted out that I have been "shitty" towards her this whole time ( 1 year) of her going through chemo, radiation, etc. It came out of nowhere. she said that I've called her to discuss my work issues and celiac issues more than asking her how she is feeling. I honestly know she is blowing this all out of proportion. I took her to chemo and was there for her surgery. I live an hour away. She doesn't work, I work 32 hrs a week as an advice nurse listening to people's medical issues for 8 hours. I get 40 calls a day. I have listened to my sister about her cancer for hours. When I try to talk to her she tends to interrupt. My issue is maybe I didn't call her enough, but i called on average 2-3 times a week...but I tried to also talk about different topics because after being a nurse for 28 years it's exhausting talking about diseases 24/7. my mom also has cancer. I pointed out to my sister that celiac can be deadly. I had 2 miscarriages because of it more than likely...because I had them before I was diagnosed. It's silly because it's like we are comparing diseases. But her comment came out of nowhere. People, even my own family act so rude about food issues. her daughter has a peanut allergy so you would think she would be more sensitive about it. I am not trying to say celiac is worse than cancer, but I am so hurt over her comment that I have been shitty towards her. It's totally wrong. I even stopped talking to one of our cousins because she ignored my sister through her cancer. I took her daughter on trips with us twice because they couldn't go anywhere during chemo. I just can't believe this whole thing happened because I asked for 2 gluten-free dishes.
  24. 2 points
    Wow! She has been through the ringer. Keep in mindthat some 10% of celiacs are seronegative. In that particular case, a GI can go straight to an endoscopy. At the very least, the cause of her reflux should be investigated. I suffered from it and as I mentioned before, it was chronic gastritis and not celiac disease (which is in remission). Reflux can also be EOE and that can can eczema and fatigue. http://www.aaaai.org/conditions-and-treatments/related-conditions/eosinophilic-esophagitis You can trial the diet and possibly order a genetic test. Some 35% of the population carries the genes for celiac disease but only a tiny few actually develop celiac disease. At least you would know whether or not she has the potential. I was sure my niece had celiac disease. She went through 4 Gastroenterologists. The final one ordered a pill camera and discovered Crohn’s well beyond the reach of both scopes. Why am I saying this? If your daughter has an autoimmune disorder and it is not celiac disease, the gluten free diet might help a bit, but it will not cure other autoimmune issues. You could try the diet. You have nothing to lose. It is a lifestyle that can be difficult (but doable) but your daughter has to have 100% buy-in. Good luck on her sports! Wow! Three! I hope she can keep it up. Two was the most my kid attempted. Now her focus is on music. No time to do everything. Most doctors get little or no training on diet or exercise in medical school. This is slowly changing. I am sorry that you have had breast cancer. If anything, celiac disease has made my family more food aware. We focus on eliminating or reducing processed foods. I think the old Standard American Diet has not be good for any of us.
  25. 2 points
    My daughter is 13. She was diagnosed last August. She also had horrible neurological symptoms. We went to a highly recommended and regarded GI doc who was stumped by her neuro symptoms and didn’t believe they were celiac related. We finally took her to the best Celiac GI specialist in our area who understood that her systems were related to gluten and celiac disease. Don’t feel crazy, maybe it’s time to switch doctors. As for the cross contaminations, I would start packing all your own food. It sucks, there’s no other way to put it and life changes, but it does get easier and better. Hang in there and give yourself grace!
  26. 2 points
    Have you had follow-up testing for celiac disease? All your current issues may not be celiac-related at all! For example, I was having stomach issues that persisted after a glutening at the beginning of last year. I was driving my self crazy thinking I was getting gluten somehow into my diet. My celiac antibodies were elevated as confirmed by my GI. I went on a pretty restricted gluten-free diet (no processed food and no going out to eat). Still I had problems. A repeat endoscopy revealed a completed healed small intestine, but chronic autoimmune gastritis. I do have other autoimmune issues, so I guess this is just another one! Anyway, make sure you have had follow-testing. Note that the antibodies tests are good for diagnosing, they are not always good for dietary compliance (celiac researchers are finding this out, but it is the only non-evasive “tool in the toolbox” for now (better than nothing). Besides testing, look to your gluten-free diet. Non-processed foods and NOT going out to eat at restaurants might help you for a few months. Avoiding even gluten-free grains might be beneficial in the short term. The Gluten Free Watchdog, Trisha Thompson, Dietician who has celiac disease and advocates for us) published a new study. (Seems like gluten might be in more gluten-free foods than we thought). 😥. Read for yourself. You might be doing everything right! I am not affiliated financially with GFW, but I am a subscriber. https://www.glutenfreewatchdog.org/news/significant-study-published-on-the-amount-of-gluten-eaten-by-folks-with-celiac-disease-on-a-gluten-free-diet/ The reality is not much research has been done for celiacs after they have been diagnosed. So, we are learning as we go. Remember, supplements are processed. Just a few years ago, celiac researchers found that many probiotic supplements did contain gluten. Make sure for SURE that your supplements and prescription medications do not have gluten. Better yet, focus on non-processed nutritionally dense foods. Much less risk. Funny, but celiac centers will place non-responsive celiac patients on the Dr. Fasano gluten-free diet. Guess what? It is mostly non-processed foods. I wonder why? 🤔
  27. 2 points
    That's normal. They sell a sandwich not an omlette. But the more concerning fact is that a Celiac is trying to eat at a Dunkin' Donuts.
  28. 2 points
    I am sorry to hear about your frustrating experience with the physicians. To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier? If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude. It is your own body, if you know that gluten makes you feel bad, don't eat it. My daughter was diagnosed 4 years ago. We haven't seen our GI doctor in 3+ years. Celiac disease does not require medication. You self medicate through a gluten free lifestyle. BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.
  29. 2 points
    Worse yet is Stephen Johnson Syndrome where medications like Tylenol can cause your skin to blister off. Horrifying! https://rarediseases.info.nih.gov/diseases/7700/stevens-johnson-syndrome I do not take any OTC medications. None. I just tough it out. That is because I usually react (anaphylactic) to medications like acetaminophen, NSAIDs, etc. Prescription drugs are included too. Each new prescription can be scary, so unless it is life-threatening, I take nothing. If I do, I am already in the hospital and they can treat my reaction. If you have period cramps, take a bike ride, use a heating pad — anything to get your mind off your pain. Have cold? Bone broth or chicken soup to keep hydrated. Use a Nedi pot and follow the directions! Fever? Use those blue cold packs to adhere to your body. Some fever is good. It helps to fight the infection. And then rest. It can heal so many things. We are just too quick to take a pill to ease our symptoms. There are benefits and risks to all drugs and supplements! I am not even going to get into the fact that 60% of all generic drugs (those cheap $4 presciptions at the local big box stores issue) are manufactured in India and China. Now the FDA is struggling to send their dozen or so inspectors to check on some 6,000 or more pharmaceutical companies in India alone. Reports of medications not working, unclean factories, the list is long. https://www.consumerreports.org/cro/news/2014/04/are-generic-drugs-made-in-india-safe/index.htm https://www.bloomberg.com/news/articles/2017-08-30/family-owned-drug-factories-in-india-erode-u-s-generic-prices
  30. 2 points
    Hi, Vickie this post was actually my personal blog post on this site, and some issues I am dealing with after a recent gluten exposure has caused some digestive troubles. You should start a new thread on the main forum. Cancer is a serious issue if you wish to try a natural treatment that is your choice, try rotating your veggies, you might have a sensitivity them, keeping a food diary also. I can not eat iceberg for months without a extreme urge vomit. NOW to make veggies easier on the gut try steaming them to mush and blending them (the water used is chock full of the vitamins and great) I have recently turned to drying out and mortar and pedestal grinding kale into a powder and using it foods, and using morning powder. You can get dehydrated kale or rythem kale chips and grind them this way and use in broths, soups or shakes. I know one company that sells dehydrated veggies you could grind into powders and then blend and make soups with, blended soups with say turmeric, coconut milk, butternut squash, curry paste, ginger, and kale used to be one of my staples before my carb issues. Try taking digestive enzymes with your meals to help you break them down, I use Jarrow Enzymes Plus for this. Aloe vera inner fillet is good for soothing the intestines, marshmallow root, slippery elm, also help star anise is good for gas.
  31. 1 point
    The rash and bilaterally looks so muc like my sister’s. She just got her biopsy back positive for dh. She also had positive antibody test and genetic markers. Dermatologist argued with her about needing the biopsy, oh yes she was negative on endoscopy. I also have celiac positive endoscopy and antibodies and of course the genetic markers.
  32. 1 point
    Or eat only at places that are 100% gluten free.
  33. 1 point
    Emergency, I keep Julian Protein Bars, and Miracle Noodle MRE packs with me when I leave, I also take meal replacement shakes. I often take bags of nuts/seeds/cocoa nibs kale chips etc for snacks. I also starting last month started keeping a sealed jar of sunbutter in my under seat storage, You can stick almond butter and sun butter individual pouches and the Julian or what ever protein or kind nut bars in your purse. If you can the old thermos of soup, or a gluten free sandwich works old style lunch box meals. I heard recently of someone who kept gluten free progresso cans in their trunk all the time...and just stuck it on top of the engine to heat it up and pulled it off with a oven mitt and opened and ate...crazy college kids dealing with this disease on a budget eh. I also make steam pouches with a food saver vacuum packer just sticking the veggies, seasonings etc in a pouch and sealing it, freezing it...just grab a pouch and go...gas station microwave lay down some napkins..stab some holes in it and instant steamed meal (bring a plate). I recently did a stock at a gas station for gluten free options. Rythem kale chips, Epic jerkey and pork rinds, many bars, certain brands of seed had gluten free, I saw wonderful pistachios, hard boiled eggs, and some lays chips.
  34. 1 point
    Updated list here new links, and composed in a more organized manner LOOK for * on links and you can order from them directly, at the bottom are some websites to purchase from NOTE these are alternative foods, in many cases WHOLE foods of 1 ingredient are your best friend with the gluten free diet and cooking in your own home. I made this list to make the transition simpler for many, give treat options, and show safe brands for certain foods that many have used. Full Meal Options/Entrees, broad spectrum companies http://iansnaturalfoods.com/allergy-friendly-products/search-by-allergens/?tax_products_tags[]=gluten-free&wpas=1 ^Ians gluten-free options you will find sides, baked/fried snacks, onion rings, chicken strips, cheese sticks, fish sticks, pizza bread. etc from them that are good subs you can find where to buy them or even have your local grocer stock them on request. Best thing about Ians is you can go to their site and adjust the filter to find stuff free of other ingredients. http://udisglutenfree.com/product-catalog/ ^ Whole lot of food staples from this company (none safe for me) but all gluten-free alternative you can have, udi is like the cheap bargain gluten-free brand alot of there stuff seems lacking but they have a little bit of everything. From microwave dinners, pizzas, burritos, instant pasta dishes, granola's, and cookies. http://www.vansfoods.com/our-products ^ go to breakfast guys. Select Gluten free from dietary restrictions or other options you need, NOTE most products use oats. https://enjoylifefoods.com/our-foods/ ^All Free of the 8 top allergens, they have premade cookies, chips, and baking ingredients. http://www.namastefoods.com/products/cgi-bin/products.cgi?Category_Id=all ^ Free of top 8 allergens, they have everything from flours, baking mixes, and entrees, https://www.simplemills.com/collections/all ^Mixes, Crackers, and cookies, ALL GRAIN FREE https://knowfoods.com/collections/frontpage ^Low carb bread, muffins, waffles, cookies, etc. All low carb and keto friendly great for diabetics https://www.geefree.com/collections/all ^All gluten-free Pizza pouches, Meal bits, pastry puffs, http://www.pamelasproducts.com/products/ ^Mixes, Pasta, Cookies, Bars, crackers, even some grain free options http://www.aleias.com/shop/ ^Panko, Cookies, Almond Horns, Croutons, etc. https://www.schaer.com/en-us/po/gluten-free-products ^Bread, pasta, mixes, cookies, muffins, pizza etc. Broad spectrum major company. High reliance on corn and starches, but very well respected. Breads/Pizza Note some of the above spectrum companies also offer their own https://canyonglutenfree.com/buy-gluten-free-bread-products/ ^Raved by most people I talk to as some of the BEST gluten-free breads/bagels/buns available, several of my customers talk about using them with artisan nut butters all the time. https://www.mikeysmuffins.com/products/ ^Low Carb, Grain Free, Starch Free, Dairy Free, Great English Muffins they also make a pizza crust, muffin tops and cookies. https://julianbakery.com/shop/?fwp_product_categories=bread *^Grain Free Corn free low carb bread, The seed bread toast just like gluten breads, The almond and coconut each have their own niche. Bread is best used toasted, PS the coconut bread makes awesome french toast http://againstthegraingourmet.com/gluten-free-breads ^Many claim this is a great bread, they say the french bread is wonderful from them and the rolls. I find them to be starch bombs but if you want that bready starchy goodness this is your bet. Rolls, Cookies, Pizza, French breads etc. All grain free. https://cappellos.com/collections/pizza *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you. https://realgoodfoods.com/productpage/ *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW https://www.califlourfoods.com/collections *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy, bit like a flat bread, they can also be made into chips or folded into a giant pizza pocket.. (did this once for fun after cooking it just 5 mins then loaded it with cheese and veggies melted some more then fold and ate it lol) https://www.geefree.com/collections/all *^Makes Gluten free pizza rolls, Gluten Free Hot Pockets, burger bites, puff pastry sheets, and pot pies AND THEY SHIP TO YOU http://glutenfreedelights.com/our-sandwiches/ ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes. CRUST MIXES Grain free https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/ Baking Mixes https://julianbakery.com/shop/?fwp_product_categories=mixes\ *^Grain Free low carb mixes have pancakes, bread, pizzia https://www.simplemills.com/collections/almond-flour-baking-mixes ^Grain Free Mixes https://gooddees.com/collections/all ^Grain Free Low Carb Mixes Sugar Free http://www.bobsredmill.com/shop/gluten-free/gluten-free-mixes.html ^Major Staple provider of baking mixes and flours for the gluten free https://www.bettycrocker.com/products/gluten-free-baking-mix ^Your old Favorites, note these are loaded with starches and can cause some issues (Note a specialty gluten-free company) http://www.kingarthurflour.com/products/gluten-free-mixes/ ^More classic starchy mixes (Note a specialty Gluten Free company) Chocolate https://phikind.com/collections/all ^Gluten Free, Dairy Free, and Sugar Free Truffles! https://www.lakanto.com/collections/sales-title/products/box-of-lakanto-sugar-free-55-chocolate-bar ^Gluten Free, Sugar Free, Dairy Free, Soy Free bars OMG better then a Hershey bar https://www.lindtusa.com/gluten-free-chocolate--sc4?utm_source=eean&utm_medium=affiliate_loyalty&utm_campaign=lindtaffiliate#facet:&productBeginIndex:0&facetLimit:&orderBy:&pageView:grid&minPrice:&maxPrice:&pageSize:& ^Various gluten free truffles, and chocolate bars http://lilyssweets.com/ ^Chocolate Bars, Baking Chips etc. all gluten, dairy, and sugar free. Might contain Dairy in some and soy https://www.thehersheycompany.com/en_us/products/dietary-needs.html ^ Hershey List Nestle has a list but it varies from country to country and at the time they do not have one for the US with up to date information that they will disclose. https://criobru.com/collections/crio-bru *^This is a brewed coffee drink as a alternative to coffee, it is made of ground and roasted cocoa nibs. It can be eaten sprinkled over desserts or in baked goods. Bars https://julianbakery.com/shop/?fwp_product_categories=protein-bar&fwp_per_page=100 ^High protein low carb, meal bars, take some getting used to with the texture but great for diabetics and those sensitive to sugars. https://www.kindsnacks.com/products/kind-nut-bars ^Good nut bars and snacks they also make granola https://theglutenfreebar.com/ ^Gluten free food bars, contain oats in many. https://enjoylifefoods.com/our-foods/grain-seed-bars/ ^Allergen Free Bars Snacks/Chips/Crackers/Wraps https://www.mygerbs.com/ *^They have pumpkin seeds, hemp seeds, sunflower seeds, granola, etc. all free of the top 8 allergens, Also they offer various spices, etc. https://eatprotes.com/products/chips *^Grain free low carb, vegan protein chips, bit of a acquired taste http://beanitos.com/#snacks ^Corn free tortilla chips, taste like a high end restaurant chips, they also make corn free puff snacks. http://www.beanfieldssnacks.com/ ^More Corn free tortilla chips note these also have vegan options, they are a bit lighter and crispier. http://www.lundberg.com/products/snacks/ ^Rice and Quinoa Chips, crackers, etc. https://sietefoods.com/collections/tortilla-chips *^Cassava based chips grain free bit high in starch but light and crisp https://sietefoods.com/collections/tortillas *^Cassava based grain free tortillas http://www.nucoconut.com/coconut-wraps/ *^Coconut wraps, I love to use these, you have to warm them up a bit to make them pliable. https://www.bluediamond.com/brand/nut-thins ^Almond based crackers https://bakeryonmain.com/shop/ ^Oat based granola snacks, bars, etc. https://www.wildwayoflife.com/ ^Gluten free, Grain Free, Hot Cereal, granola and smoothie bases https://www.goraw.com/shop/sprouted-flax-snax/ ^These flax crackers are great...the pizza is addicting http://origin-www.fritolay.com/snacks/special-dietary-needs/us-gluten-free-products-and-products-not-containing-gluten-ingredients.htm ^Frito Lays List of products Fries/Hashbrowns/Tatertots http://www.oreida.com/en/Products/Categories/French-Fries http://www.oreida.com/en/Products/Categories/Hash-Browns http://www.oreida.com/en/Products/Categories/Tater-Tots ^Go to company for most of is with this disease, NOTE most other companies will use wheat flour in fries/tots/hashbrowns http://iansnaturalfoods.com/products/organic-crispy-potato-puffs/ Granola/Cereal/Hot Cereal https://www.wildwayoflife.com/grain-free-hot-cereal https://www.wildwayoflife.com/grain-free-granola ^Grain free Granola and Nut based hot cereal/porridge https://julianbakery.com/shop/?fwp_product_categories=granola-cereal&fwp_per_page=100 ^Low Carb Sugar Free Grain free Cereal https://www.chex.com/our-products/ ^Chex a simple and easy go to for gluten free Cereal http://www.creamofwheat-com.bg.bcdev.site/products/cream-of-rice/ ^Now this is a funny one from the makers of the poison cream of wheat, we now have cream of rice for a simple instant rice gruel, and they certify it gluten free. Granola also refer to above links for MyGerbs, Udis Cereal also refer to Vans, Cooking Ingredients/Rice/Flours/Condiments https://www.pacificfoods.com/broths-and-stocks ^Many of use this brand in our cooking https://www.spicely.com/collections/organic-spices-seasoning *^Gluten free, Organic, Non GMO spices #1 go to for safe spices for many of us http://www.lundberg.com/products/ ^Great and safe Gluten Free Rice company, they make many instant rice entrees, rice crackers, and rice cakes http://www.lotusfoods.com/#products ^Another option for various rice products https://cappellos.com/collections/pasta ^Grain Free FRESH soft pasta options EXPENSIVE but some of the highest end stuff you can get http://www.glutenfreeoats.com/ *^ONLY true Gluten free oat company that I would trust, it is owned by a celiac family https://miraclenoodle.com/collections/miracle-noodle-rice-products *^Carb Free/Low Carb, Grain free noodles, rice, and instant meal kits. https://www.waldenfarms.com/ ^Gluten Free, Sugar Free, Carb Free. Dairy Free, Soy Free for cravings when you can't have them, bit overly processed but helps out when your limited They have coffee creamers, topping syrups, dessert dips, savory dips, salad dressings, condiments etc. CAREFUL if you have issues with highly processed foods and xantham gum http://natureshollow.com/index.html ^Sugar Free jams, honey, and maple syrup using xylitol for a sweetener instead of of a bunch of crud. Stuff takes awhile for your gut to adjust to but honestly They have the only Honey I can use http://www.polanerspreads.com/polaner-products/ ^ All their products are gluten-free and their jams are good I love using their sugar free products with fiber, I also use some of smuckers SF products https://www.coconutsecret.com/products2.html ^gluten-free and soy free teriyaki sauces, soy sauce subs, garlic sauce, cooking sauces, and they make knock off granola bars without oats http://sirkensingtons.com/products ^Great source for mayo, vegan mayo, mustard, ketchup, and SECRET SAUCE. all gluten and corn free with NO artificial preservatives, My main condiment when cooking for others, as a chef I trust it quite a bit. http://www.nucoconut.com/products/coconut-vinegar/ ^These are vinegar made from coconut, great for cooking with and over salads http://www.eatparma.com/store ^Awesome Vegan Parmesan options the bacon one is a GOD SEND https://www.nutilight.com/ ^OMG You need to try this, dairy free, and sugar free Nutella substitute https://nekstella.com/collections/all ^Another Nutella Substitute, this company also makes a hazelnut syrup. This companies is not as sweet but is the purest I have found http://new.organicvillefoods.com/category/products/ *^gluten-free sauces like sriracha, BBQ, mustard, ketchup, ect. Good line up of products. http://www.authenticfoods.com/ *^Great source for flours, baking ingredients etc. all you basics https://store.nutiva.com/coconut-flour/ ^Coconut flour, I use this brand in my baking alot Meat/Meat Alternatives http://www.applegate.com/products/breakfast-sausage/category http://www.applegate.com/products ^Apple Gate Makes various Meats certified gluten-free http://trans-ocean.com/our-products/crab-classic/ http://trans-ocean.com/our-products/simply-surimi/ ^Good priced gluten free artificial crab is hard to come by, this company I found at a expo, I use the surumi in dips and recipes when the pure Millers's Crab is out of my price range. http://beyondmeat.com/products ^ Meat alternative using Pea Protein, I love the beefy crumbles as they have the texture and flavor of ground beef. Low carb and good for ketogenic diets. MUCH easier to digest then actual beef while having the same amount of protein and less fat. https://www.jennieo.com/products ^look for the gluten-free label, you can get all kinds of sausage, bacon, burger patties etc from them all from turkey. I like using the bacon and sausages for soup stocks, and seasoning myself https://skinnygirllunchmeat.com/ ^Love the deli meats from this company I use them in my catering sometimes https://www.mccormick.com/thai-kitchen/products ^I love using the curry paste from the Thai Kitchen, Noodle kits, Soup kits, stir fry kits, even Chinese take out kits. some even instant microwaveable. All gluten-free from what I have found gluten-free Thai/Chinese food. Dairy Free Alternatives to Dairy Foods https://www.bluediamond.com/brand/almond-breeze ^ Almond, cashew, coconut, blends etc. https://silk.com/products ^ More Almond, cashew, coconut, blends, they also offer yogurt and icecream alternatives. http://sodeliciousdairyfree.com/products ^ They offer many coconut options, Yogurt, cheese, milks, icecream pints, icecream bars. http://malkorganics.com/products/ ^VERY high end minimally processed almond milk, one the the best https://www.ripplefoods.com/products/ ^ NUT FREE, Dairy Free options of a rich milk alternative from yellow peas (legumes) http://goodkarmafoods.com/products/ ^Flax Based milk alternatives http://www.leafcuisine.com/raw-vegan-food-dairy-free-probiotic-cashew-spreads/ ^ BEST and least processed cheese spreads, cream cheese etc. I can eat these without any issues https://daiyafoods.com/ ^Offers Vegan cheese slices, cheese blocks, cheese shreds, pizza, CHEESE CAKES!, yogurt, s https://followyourheart.com/products/ ^ Diary free and vegan, cheese, spreads, dips, dressings, condiments https://winkfrozendesserts.com/collections/wink-frozen-desserts-pints *^ICE CREAM by the pint AND THEY SHIP IT TO YOU, Dairy free, soy free, sugar free, PERFECT bliss I suggest getting the gluten free pastry pack Flavors/Extracts https://www.capellaflavors.com/13ml https://www.capellaflavors.com/4oz https://www.capellaflavors.com/silverline ^Great flavors for any dessert you might desire, you add 1 drop to each oz of liquid base in smoothies, icecream, and drinks....great way to kick cravings, Needs Sweeteners, Silverline is the lower priced line but limited flavors....the fruit circles ones, and apple jacks one really do taste like the cereals they are named after....try some in a glass of almond milk for a amazing treat http://www.lorannoils.com/1-ounce-larger-sizes ^Baking Extracts Coffee/Tea https://www.christopherbean.com/collections/flavored-coffee *^ DESERT Flavored Coffee all gluten-free and safe, I called the company and even tested most of the coffee flavors myself using testing kits. Sounded too good to be true but most of these taste dead on like the deserts they are supposed to , just add sweetener. Also try their plain coffee http://www.republicoftea.com/ *^Great tea company, all gluten-free certified teas, both bulk and bags. https://criobru.com/collections/crio-bru *^Coffee Alternative made from ground roasted cocoa nibs....great for toppings and in baked goods also Hard Ciders/Liqours While Most Hard Liqours are gluten free due to the distilling process these are ones I have contacted the company on. https://austineastciders.com/ ^Local cider here in Texas, I keep these for guest, good alternative to the "Beer Can Chicken" http://www.acecider.com/ ^Suggested by someone else I was talking to https://www.captainmorgan.com/ ^Old Staple for many and company says they are gluten free http://admiralnelsonsrum.com/ ^I use this in cooking, goes great finishing off veggie saute http://www.titosvodka.com/ ^Corn Based Vodka https://www.ciroc.com/ ^Grape Based Vodka EMERGENCY MEAL Supplies for long term survival http://www.glutenfreeemergencykits.com/gluten-free-emergency-kits-1/ ^All gluten free meal options dedicated company https://www.wisefoodstorage.com/emergency-food-kits-supplies/gluten-free-food-storage.html ^Gluten Free Options from a Wise company http://www.thrivelife.com/all-products/thrive-foods-161/gluten-free.html ^Various Freeze Dried foods, great for not just emergency foods but the dehydrated veggies give options for soups and always having veggies in stock without refrigeration. Places to order From Check these for most the the above products, these are the best pricing options, Always cross check and look for sells. https://www.luckyvitamin.com ^Really good place for supplements, protein powders, and some gluten-free foods and snacks, Cross check with amazon for best pricing and sometimes Luckys will price match. http://thrv.me/gf25 ^Thrive Market, like a online grocery store that ship to you so you do not need to go out and buy stuff, has alot of brands just search under Gluten Free. https://www.amazon.com/ ^The go to everything store. Found a UPC list from Several Grocery stores, you can takes these to your local grocery store manager and have items ordered. https://www.heb.com/static/pdfs/Gluten-Free-List.pdf ^HEB/Central Market http://www.wholefoodsmarket.com/service/gluten-free-products-list ^Whole Foods select location and store and you can even see what they have in stock. https://www.kroger.com/asset/541b1c6a84ae4e0350fcace0?data=1 ^ Kroger http://www.traderjoes.com/PDF/tjs-gluten-free-dietary-list.pdf ^Trader Joes
  35. 1 point
    Bob’s Red Mill Natural Foods, Inc. Voluntarily Recalls Organic Amaranth Flour (22 Oz.) Because of Possible Health Risk https://www.fda.gov/Safety/Recalls/ucm604028?utm_campaign=Bob’s Red Mill Natural Foods%2C Inc. Voluntarily Recalls Organic Amaranth Flour&utm_medium=email&utm_source=Eloqua
  36. 1 point
    The gold standard for diagnosis is positive blood work combined with positive endoscopic biopsy. Why the biopsy? Because the TtG IgA alone could possibly be indicative of some other AI disease going on such as Chron's. Therefore, in your case, it's best to do the endoscopy & find out if anything else is going on in there -- maybe several things are, maybe not but better to know. Right? After that, then you can consider giving the gluten-free diet a good try if the biopsies are negative for celiac. I am going to repeat this b/c it bears repeating. This is VERY important!!!! CONTINUE TO EAT GLUTEN EVERY SINGLE DAY UNTIL THE ENDOSCOPY HAS BEEN DONE.
  37. 1 point
    That is not a Celiac test. So I am not sure how you know you don't have Celiac. A lactose intolerance is quite common side effect of Celiac
  38. 1 point
    Welcome to the board. I second the Thai Kitchen reccomedation. I use their products all the time. Their rice noodles are my go to noodles, especially the 'angel hair' variety. Celiac is not unknown in East Asian populations (it may at times be related to a rarer gene than what is most common in the caucasian population though so don't rely on just gene testing) and is becoming more commonly diagnosed as the diets become more 'Westernized'. Do be sure to encourage your first degree relatives, ie parents, siblings etc, to get tested. Celiac is strongly genetic.
  39. 1 point
    Would just wipe it out, turn it upside down, etc. maybe run a couple of gluten-free waffles thru it and you can eat them.
  40. 1 point
    OMG I want to thank u all so so much for all helpful tips, tricks, ideas, and advice!!
  41. 1 point
    Thanks GFinDC. I think it is an excellent start. 40 years ago nothing was done to enhance daily life for disabled people. Some courageous people fought a lot to improve this unfair conditions and nowadays, physically challenged people can take the bus or travel to most of the public places, which is an outstanding achievement. At a much minor scale, being able to request a non gluten sandwich for instance (with all the safety that goes with it) may seem to be trivial, but the addition of small "plus" in our daily life will allow us to better our life.
  42. 1 point
    Fresh out of the oven for easter
  43. 1 point
    I mentioned in an earlier post that I was going to try a gluten-free meal delivery service. I chose Trifecta Nutrition because they said that all of their foods are "100% gluten free" with "no chance of cross contamination". I chose their Paleo Plan because I also need to lose some weight. I started it today and ate the Salmon with Asian Vegetables. All I had to do was put it in the microwave for 3 minutes and it was ready. It tasted pretty good and the portion size was plenty. For dinner I will have Garlic Veggies with Caramelized Onions with Diced Beef. Looks good. Hopefully tastes just as good as it looks. I know there was one person interested in this and I saw that there was 344 view as on now so I'll describe the food, any reactions I may have, and how the overall diet is working. I'm not trying to sell anyone on Trifecta, it's just the one that I chose. It is a bit pricey at $149.00 for 10 meals. If it all works out maybe I'll try a cheaper service but that 100% gluten-free claim got me. Check in from time to time if you're interested. I'll out up a few posts every few days unless something happens.
  44. 1 point
    If you look up what Wheat Zoomer tests, it does include the celiac auto-antibodies, but also antibodies to the parts of gluten themselves. Prior to the tests for auto-antibodies, antibodies to gluten were the go to blood test for screening for celiac disease. But it’s not as specific to celiac, so they are no longer done in standard labs in the states (this is according to my daughter’s GI doc at U of C). In research labs, however, these tests are being employed (particularly in Europe) because it is suspected that the antibodies to gluten cross react with our own tissue and are a possible precursor to auto-antibody production. That is the thinking with gluten ataxia at the moment (I have been in contact with Dr. Hadjivassilou about the topic). The only test for gluten ataxia is antibodies to gluten and resolution of symptoms on a gluten-free diet. So there is still value in the Wheat Zoomer test.
  45. 1 point
    Well I got a ton more issues from the damage and complications your quite lucky so far with only dairy... I can not have dairy, soy, peanuts, allergic to corn now, slight issues with olives, xantham gum heck I got another AI disease as a complication...that will not let me eat the sugars fructose or glucose and reacts to carbs in general....yeah so no grains or anything made from them for me. Then I got pancreas issues so meats and animal based fats are very limited. But I did find brands of low carb grain free breads, etc. I run a bakery and make grain free baked goods and sell them to fund my diet....I have spent years trying, sampling, and cooking for others with this disease and going to gluten free expos etc. I have composed a very comprehensive list of various things. While still growing these are ones I have seen and well trusted, I also have ones you can order from and sites on the bottom for online ordering. https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/
  46. 1 point
    Those figures are very high and strongly point to Celiac. If your doctor had done a full Celiac panel and the rest of the testing came back positive, then you wouldn't need a biopsy for diagnosis but to check on level of damage. But they did not do a full panel so if you need more convincing than what they have done, you would progress to a biopsy. You need to find someone who actually knows this. Find a good GI so they can make sure you get a definitive diagnosis but it looks like you do have it. Good luck!
  47. 1 point
    https://www.barilla.com/en-us/product-results/pasta/range/gluten-free/?sort=alpha Many people with Celiac use Barilla without issue and they do a good job of preventing cc. It is a very trustworthy product. When I eat too much dairy, it gives me the exact same symptoms as a gluten hit. It can be very difficult to pinpoint exactly what makes a person sick because our GI tracts are sensitive anyway. If this and other labeled gluten-free products have made you sick, that does not mean it was gluten that is the culprit. It could be another ingredient and that can be daunting to figure out.
  48. 1 point
    Hi MF. I found out I had celiac disease just over two years ago and once I went strictly gluten-free I noticed 'things' got better very quickly. I had been pretty bad before, without even realising it, and had gotten used to going to the loo all the time, being constantly exhausted and fragile-feeling and having a very rumbly tummy after eating. I only realised this when, three weeks after going gluten-free, I was pretty much back to how I had been before I hit my 40s and my celiac disease symptoms kicked in. When I do get glutened these days (and it happens quite regularly as I still have to learn things like Pringles crisps are NOT okay and they DO contain gluten), I find that my horrible bodily reactions are much fiercer than they were before I stopped eating gluten. I usually feel okay again 12 - 48 hours after my gluten mistake, getting better faster the less gluten I've accidentally eaten. I find I am better off avoiding oats and quinoa but think I am okay with beer, although I still avoid drinking more than a half pint every now and then. I find the condition much easier to manage than I thought I would and don't miss wheat-laden breads. It's just a shame they haven't invented a gluten-free pasta that holds it's shape and isn't considerably pricier than the durum wheat variety, but I live in hope.
  49. 1 point
    I think I read the 1-2% fasle negative statistic on the University of Chicago website but my general experience has not been that doctors test properly. I'd easily believe that half the doctors do the wrong tests or insufficient numbers of tests which would make this number a bit larger. My son was first flagged for celiac because of failure to thrive at 18 months and was told that he tested negative. After looking back through his records I see that he wasn't given a blood test at all for celiac (blood work was done for other things), they based it on assessing fats in the stool, which is not an accepted means. A second doctor did the same at age 2.5. This is a little more extreme, but plenty of adults are given the wrong or insufficient blood tests and told they are negative. And then there is lab error, lack of skill in the technician. I think the reason these tests are sent out from most labs is that it takes some subjective skill at reading the tests, it's not as clear as a strep culture or something. So I suspect the 1-2% is what a researcher would find in a study of their patients tested by skilled pathologists, with results scored by skilled technicians. I'm very skeptical that this reflects most people's care.
  50. 1 point
    I think another variable is which body systems are the most severely or earliest impacted. I showed false negative blood work repeatedly even after my GI system was severely compromised. I do not know if a total IGA was ever done as I was diagnosed many years ago and was seeing many different doctors for different system impacts. Since I had false negative blood tests (the older ones of course) doctors did not even consider doing an endo. I did however have brain lesions that would have been diagnostic if only the doctors had been savvy enough to recognize them for what they were. I have DH so we know for sure that I have been celiac since childhood but the most severe symptoms that I had for years were neuro and skin related. I had celiac for over 30 years before gut impact became more than an occasional inconvience. Since so many doctors consider celiac to mainly be a GI related disorder rather than the autoimmune disorder that it is there may be folks that are considered to have false positive tests because their biopsies are negative. In my own family after I was finally diagnosed both children showed positive on blood work and one on the endo. They never would have even been checked for celiac if I hadn't insisted because I knew it was genetic.