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  1. 2 points
    This article contains incorrect, misleading, and incomplete information along with a lot of off point discussion and typographical errors. Please edit or ask someone to edit it for you. For the readers, please refer to credible sources like physicians or dieticians for information like this.
  2. 2 points
    I have had Celiac disease for five years, and have been on the same learning curve that many people on this forum have been on. It is a challenge to start, but once you find your way to navigating how to manage it, it just becomes a part of your lifestyle. One aspect that I have not been able to figure out, and the reason I put this forum under "Coping with Celiac Disease", is the victim mindset that seems to be so pervasive in these forums. I am sure I am not the only one who one out there who feels that this "woe-is-me" mindset is detrimental to the public perception of those of us who have the disease. When I am at a friend's house, or when I eat out at a restaurant, I consider myself to be a representative of the Celiac community, and as a result, I do not cope with Celiac Disease. I live with it. I manage it. I work with the people who will be providing me with food to keep me safe. I trust them to take on that task, and I present myself in a way that they would want to take pride in keeping me safe. I have not been disappointed. I have never inspected a kitchen at a restaurant, and my friends know that I will need to read labels to decipher information they would miss. But my friends are willing to come on this learning curve with me because they care about me. I believe that approach is everything and if I approach wait staff in a way that respects them and takes care of my needs, then I make it easier for the next person with Celiac to take care of their needs. How do you manage living with Celiac disease? What are your strategies for being a good representative of this community? I feel that together, we can approach living with this disease in a constructive manner and change the tenor of the conversation. Take care all, Rob
  3. 2 points
    OD stands for optical density. When the test is run it is evaluated in a machine which reads a color and gives results in OD units. Most blood tests have absolute units such as mg per deciliter, a weight per volume of blood. Celiac tests are not standardized. The units are arbitrary based on the machine used to read it. Thus each manufacturer has their own range of what is normal and what indicates celiac. You cannot compare your results with the range from a different lab or test manufacturer.
  4. 2 points
    2 reasons, 1 it insures they do not dry too much out, 2. when they do cook it helps sort of steam cook in the inside giving that "puffed" soft texture inside and the oil gives it a fried crisp outside. If you cook on a wire rack placed on top of a cookie sheet it almost air fries them. Bonus points if you have a convection oven
  5. 2 points
    Hi Nick, Welcome to the forum! Your doctor doesn't seem to have run the full celiac disease test panel. Normally there are 5 or so antibody tests done. And then an endoscopy is done to confirm gut damage. It's bad to go gluten-free before all the testing is done. Mostly because the test results depend on the immune response being active. Regardless, now that you are gluten-free, you may as well stay that way for a few months. Many people expect that going gluten-free is going to be a very quick cure for their symptoms. But it often doesn't work out that way. A long slow improvement is a common progression. A year or more to recover is not unusual. If you stay gluten-free for several months and then try a small amount of gluten, you'll know if your body reacts badly to it. That's really all you need to know. Whether it's celiac disease or NCGS (non-celiac gluten sensitivity), you still have to eat gluten-free to feel well and be healthy. Starting out on the gluten-free diet is easiest and safest if we stick with whole foods like nuts, meats, veggies, and eggs. Avoiding dairy and sugary or carby foods is also helpful. Processed foods and eating out at restaurants should be avoided also. Cross-contamination is when a small amount of gluten gets into a food that would otherwise be gluten-free. For example using the same jar of peanut butter or stick of butter for gluten-free and regular bread. Or kissing a gluten-eater after they ate something gluteny. Cross-contamination is enough to make us sick. The immune system is very sensitive to even tiny amounts of problem proteins. There is a "Newbie 101" thread stickied in the "Coping with" section. It has some tips in it for getting started.
  6. 2 points
    Hi, being a pretty new kid on the celiac block, and the ripe young age of 63, I, with no hard feelings, realize an exercise in futility when it presents itself. I have but one symptom (so far!), but have had to resort to taping my hands, due to the excruciating itch of dh, and will not EVEN CONSIDER going into that situation. People are people, and it just isn't worth it to me. I'm sure this is not an origional idea, but what about local gatherings of us "gluteneers", renting a reasonably priced hall, and having a meet and greet? Sounds kind of fun to me! Just a thought.... Igiveup 07/16/2018--6:15pmcdt
  7. 1 point
    Celiac.com 07/28/2018 - What do you get when you cross pico de gallo, guacamole and shrimp? The answer is this fresh, delightful ceviche that can also be served as a fancy salsa, and is sure to be the breakout star for your next food gathering. Ingredients: 1¼ pounds raw shrimp peeled and deveined 4 medium limes, juiced 2 medium/large avocados ½ Persian cucumber 4 medium fresh tomatoes 1 small onion diced ½ cup cilantro chopped 1 tablespoon olive oil ¼ tsp salt and black pepper, or to taste Tortilla chips and gluten-free hot sauce of choice, as desired Directions: Season shrimp lightly with salt and pepper. Place a large skillet over medium high heat. Once the pan is hot, add 1 tablespoon olive oil. Add shrimp in a single layer and sauté about 1½ minutes on each side. When shrimp is cooked through, remove from the pan. Transfer shrimp to cutting board, coarsely chop and place into a large mixing bowl. Squeeze the lime juice over the shrimp, stir and set aside to marinate. As shrimp marinates, dice cucumber, tomato and avocado and add them to the mixing bowl with shrimp. Add dice onion and chopped fresh cilantro. Gently stir everything together until well combined. Serve in small bowls, with hot sauce and tortilla chips, as desired.
  8. 1 point
    I have to agree with you. After I was diagnosed I quit eating gluten immediately, never looked back, and I don’t expect anyone to feel sorry for me. You’re right about how it just becomes second nature. I hate when I am invited to a potluck or when we have a carry-in lunch at work and people worry about what I’ll eat. I always bring a dish to share. I prefer to just bring my own because I know it’s safe. And the learning curve is so huge with this, I don’t expect my friends or family to accommodate me. My MIL tries so hard, but her kitchen is messy, I have seen her prepare things in a way that I know dishes could be contaminated. So I just don’t say anything and do my best with her. I haven’t ever really felt sorry for myself. I guess it’s because I have a family full of AI disorders. I have an aunt and an uncle who have T1 diabetes. My mom had primary biliary cholangitis and had a liver transplant when I was 9. My step sister has lupus. My cousin has some sort of crazy AI issue that is causing hives so bad that her throat closed. And none of these people have a simple fix for their conditions. Some of them don’t even know what triggers their symptoms. I have 3 aunts and uncles with Celiac, and my son has it too. My aunt and I were talking yesterday about how lucky we are to have Celiac. We aren’t dependent on big pharma for a solution. We know what makes us sick and we know how to avoid it. If I have to have an AI issue I’m glad it’s this.
  9. 1 point
    Susie, why don't you send that primary care doc a copy of your positive celiac panel along with the notes from your gastro dx'ing you with celiac -- or better yet, make an appt. with him & hand them to him in person. Maybe he'll learn something. To all of you --- the things you're saying and what you're being told by the docs who brush you off, blame your weight & want to put you on happy pills..... I wish I had a penny for every instance of that kind of treatment we've heard about.
  10. 1 point
    Hi Brandi, I totally understand where you're coming from. I was just received my diagnosis a couple days ago and honestly, while it's a relief to finally know what's going on...it was an uphill battle to reach this point. Looking back at all the symptoms I have, I've had a lot of them since I was 11 or 12 (I'm 33 now) and every doctor just brushed them off as something else. It's taken me way too long, but somewhere in the last few months I remembered I had a voice lol...by that I simply mean that I started being very vocal about how I was feeling and what I wanted next (ie...celiac testing). Before I basically demanded celiac blood work, my primary care doc (who I've seen for the last 6 years, with the same symptoms each time) looked at me this last time, and told me I needed to lose weight because that would fix my problems. He told me that a lot of times people see gluten free as a trend to lose weight and it doesn't work like that and instead told me to exercise more instead of doing the latest trends. He then proceeded to tell me that since I'd been reading thru the list of possible symptoms, some of them may just be in my head. We sat in awkward silence for about 5 minutes while he typed out notes on the computer, then he turned to me and told me he was going to write me a prescription for anti depressants 😑. I lost it with him after that...I told him I didn't want/need anti depressants, I wanted/needed to know what was going on with my body and then told I wasn't leaving the exam room until I had an order for celiac testing. When that wasn't enough to get him to take me seriously I asked for a referral to a gastroenterologist. Fast forward to my first appointment with the gastroenterologist, he went thru my symptoms and he looked at me and said "So, you either have a really bad case of non-celiac gluten sensitivity or you actually have celiac. Either way gluten is not your friend, you need to quit eating it." He ordered testing just to be sure and when he gave me my results, he said it was pretty much the results he expected; I have celiac and that I needed to stay clear of all gluten. Honestly, I think I was actually excited to have the diagnosis, I know it's going to be a challenge to adjust to at first, but I'm glad to know what's going on. I only wish it hadn't taken my so many years and one very useless primary care doctor to find out....
  11. 1 point
    Martin, I can't ever get everything in one post. Here is a cases study/report on the use of BetaineHCL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/ Here is the shortened overview (timeline) of Fig. 1 by itself. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/figure/f1-49-53/?report=objectonly Before BetaineHCL the patient suffered (under doctor supervision) with low stomach acid in 6 months of BetaineHCL supplementation their GI problems were in remission. It should be noted this was was for an IBS patient and not a Celiac patient but for someone who has not received an "official" diagnosis and is only NCGS and we know IBS/NCGS patients symptom's in 80+ percent of the time are are interdependent (and indistinct) in a clinical setting. I would definitely recommend your research it more for yourself. Again I hope this is helpful but it is NOT medical advice. It is always good to see where other's have similar problems like yourself and got better from them. I hope it brings you hope to know many on this board know how you feel and like your self struggled with doctor's to receive our diagnosis'. Posterboy,
  12. 1 point
    Are you on FAcebook? There are some Orlando/disney groups. I don't know what the shopping and dining area is called that is outside of Disney but run by Disney? It usually has a lot of good places for gluten-free.
  13. 1 point
    Upon an invite to any gathering where someone is preparing food, and offers to make gluten free options for me, I would thank them profusely, and then suggest that I would eat earlier, or figure out what I could safely put together once I arrive. I wouldn't educate them on the proper ways yo cook gluten free, as much as tell them it's taken me months and years to figure it out, with a lot of trial and error, so I have zero expectations of them doing so. Then I would bring a nice bottle of wine and change the subject. :)
  14. 1 point
    I don't know what gluten would be in the air at a movie theater. Someplace with a bakery might have flour floating but probably not a movie theater. Also, those don't really sound like Celiac reactions, more like an allergy. Maybe mold or an air freshener? Someone who sat near you wearing a cologne?
  15. 1 point
    I will sometimes ask what they are cooking and make my own version that is safe. Other times I will eat before hand. BUT my most preferred thing is actually being the host and cooking foods I know are safe and inviting others to come join me. I always keep emergency meal bars, nuts, seeds that are safe or a MRE meal when I head out. I do not trust anything not cooked in a 100% gluten free kitchen anymore, or even cut up....I have had knife contamination of Gluten free foods. Got to admit eating with my family this year and cooking with my mother is something I have been able to do again since I invite them over and get all the required gluten free foods for a meal.
  16. 1 point
    Celiac.com 07/03/2015 - For people with celiac disease or gluten intolerance, accidentally eating gluten can have numerous undesirable consequences. Symptoms of gluten-exposure among people with celiac disease can vary, but main problems and complaints include: upset stomach, stomach pain, inflammation, diarrhea, gas, bloating, indigestion, heart burn, skin rash or breakouts, and nerve and arthritis pain, among others. If you're one of these people, then you likely work pretty hard to make sure everything you eat is gluten-free. But what can you do if you accidentally eat gluten? Officially, beyond simply waiting it out, there is no clinically accepted treatment for people with celiac disease or gluten sensitivity who accidentally eat gluten. However, there are things that many people claim will reduce the suffering and promote healing when this happens. Here are the best home remedies for accidental gluten ingestion, as submitted by readers to our gluten-free forum. The main goal is to reduce or eliminate the worst immediate symptoms, including pain, inflammation, diarrhea, gas and or bloating, etc. The secondary goal is to rebuild gut health. So what works? Or, what do people say works for them? The remedies listed below are not ranked in any particular order of importance or efficacy. Fasting—Recent studies indicate that fasting for a couple of days can help to reset the immune system, which might be beneficial for those suffering from an adverse gluten reaction. Be sure to check with a doctor before fasting, just to be safe. Digestive Enzymes-- For many people, digestive enzymes seem to help the bloating. Many people claim that such enzymes help provide relief, especially against small amounts of gluten. Two such products are Eater's Digest by Traditional Medicinals, and Gluten Defense digestive enzymes. Green tea or peppermint tea. Many people have reported that green tea is also helpful. Peppermint tea is said to promote muscle relaxation, and can help for gassy stomach issues. Strong gluten-free peppermints will work in a pinch. Imodium seems to help some people control associated diarrhea. If you have diarrhea, be sure to drink water with electrolytes to help replace lost fluids. Pepto-Bismol—Some people take Pepto-Bismol to help relieve stomach upset. Marshmallow root can help to sooth stomach and gas pain. Antihistamines—Some people claim to find relief with antihistamines, such as Benedryl, Clatratin, or Zyrtec. Often these are used in combination with other remedies Probiotics—Many people find probiotics to be helpful, especially as part of a general gut maintenance program. Probiotics are generally more helpful in advance of accidental gluten exposure, but many people take them after exposure. Either way, it certainly can't hurt. Broth—Many people with celiac disease, gut and/or nutritional issues turn to broth for help in building gut health and proper nutrition. Good old fashioned beef, chicken or fish broth can be a beneficial part of a healthy gut regimen. Broth also has many health properties beyond gut healing. Tummy Rescue Smoothie: This recipe was developed by a celiac.com reader in response to his own "gluten emergency.” The healing properties of each ingredient are also listed. Puree in blender until smooth, and slightly thickened. It is most soothing when consumed while still warm from the hot tea. Tummy Rescue Smoothie: 1 cup hot freshly brewed nettle leaf tea (anti-histamine, anti-spasmodic) ¼ cup Santa-Cruz pear juice (flavoring/sweetener - pears are the least allergenic of fruits) ¼-½ teaspoon whole fennel seed (reduces gas & bloating) 2 Tablespoons slippery elm powder (healing & soothing to mucous membranes and the gut) 1 Tablespoon flax seed oil (soothing, anti-inflammatory) ¼ - ½ cup rice milk (hypoallergenic, use to thin to desired consistency) This smoothie is best consumed in small sips over an hour or so. Magnesium also helps with pain and relaxes muscle spasms, so taking a little extra magnesium may be of benefit. For severe symptoms, drink the smoothie while reclining in bed, with a warm castor oil pack over the abdomen, covered by a heating pad set on low. Do not leave the pack in place for more than an hour. Longer-term strategies include rebuilding intestinal health with an anti-inflammatory diet, taking supplements like L-Glutamine, coconut oil, fat-soluble vitamins A, E, D, and K, Calcium, Magnesium, B-Vitamins, Essential Fatty Acids (EFA's), and probiotics, including acidophilus for about a week to get intestinal flora back in order. This list is not intended to be authoritative or comprehensive. Nor is it intended as medical advice, or as a substitute for medical advice. As with any health remedy, do your research and make the choices that are right for you. If you have any thoughts or insights on how best to treat accidental gluten ingestion for people with celiac disease or gluten intolerance, please share them in our comments section below.
  17. 1 point
    Yeah Celiac will cause the B-vitamins issues with damaged intestines Vitamin D is another huge one and magnesium. The neuropathy could be either caused by the deficiency of B-vitamins and magnesium OR it could be gluten ataxia. Do look at getting tested talk to you doctor about the FULL celiac panel, and perhaps go ahead and see about arranging the scope. You have to be eating gluten daily for testing so do not stop for now. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
  18. 1 point
    This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker. She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis. I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
  19. 1 point
    The last time I tried to buy Maalox, at several different stores I thought it had been discontinued. I went to the doctor with lower back pain. He ran a lipid panel and my triglycerides were over 10,000. I was admitted to the hospital, Acute Pancreatitis, nothing by mouth, not even ice chips, on IV Dextrose for a week. The plan was to give my guts a total break and hope I survive. Assuming you do not have pancreatitis, try eating only foods that make your tummy happy. Also don't allow yourself to get over hungry, that is one of my triggers for the scapula area pain. Cream of Rice is my good friend. Sometimes I add Hershey's Syrup, but I prefer it plain, around room temperature. Very soothing. Romain lettuce everyday helps. Ensure has 25% of your daily nutritional need in each bottle. Walgreen's branded value pack was $16 for 16 bottles. I take 500mg a day of Graviola. After a few days of looseness, it seems to help regulate peristalsis for me. Some days really suck, other days are getting better. You are undoing the damage caused by eating a poison to your body for most of your life. Make sure you are getting more than the minimum RDA essentials. Dr. Amy Meyers might be a good resource, she seems to specialize in Lupus but GFD is a core value. I hope you feel better tomorrow.
  20. 1 point
    I have yet to find any test worth spending money on.......elimination and reintroduction is the only way (I have found ) to test that works,the removal of ALL grains regardless of gluten has helped a lot .....my body does not like rice and corn (being from England that's hardly surprising) no fruit or nightshades (except potatoes that don't have even the slightest shade of green) nothing fermented ....very little dairy other than grass-fed butter and heavy whipping cream (both organic) and about 2 tsps of organic sugar.....in other words remove everything that has a "taste" ie smoked-pickled-fermented-sweet and I can function...... long story short is that food as a form of enjoyment has been long gone and I don't even look at it that way anymore...... of course this goes against all we have been programmed to expect from life ....... food and booze are the reasons for living according to the media....... its taken me 20 years to get to this point of view and I understand its not wgat people want ....but its being my best way of dealing with my crazy sensitivities cheers Steve
  21. 1 point
    Oh boy! You have them on your elbows & knees & now he's not satisfied but wants them to also be on your buttocks & hairline. What an ass! If I had a nickel for every time someone said their derm said it couldn't be dh b/c it was NOT on their elbows & knees I would be a very wealthy woman. Find a new derm. Check out this link -- there is a derm listed there, Sylvia Hsu, M.D., Dermatologist, Baylor College of Medicine. http://www.houstonceliacs.org Yes, I would say the biopsy could be taken from anywhere a new crop pops up where you haven't been using the cream. It looks like you've been doing your research & you know the things you should know. Keep eating gluten if you want a dyed in the wool dx. Also, you could go to your primary care doc & ask for a full celiac panel -- google on the site & you will come up with the proper, full, current panel. You know there's a 60% chance you'll come up negative but maybe you'll be one of the lucky ones who comes positive on the bloods. Of course overweight people can have celiac -- just ask half or maybe more of the people who are dx'd on this site. And the idiot derm you went to doesn't know that a whole lot of us with dh have fewer, milder gi issues. Still shaking my head over that ass. Your hashi's is right in line with celiac. Get tested. Pleas let us know what happens & if the derm you see knows their stuff please come back & post their info. in the Doctors forum here: http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/ so others can access a good derm in Houston in future.
  22. 1 point
    I have had a celiac reaction to gluten in Trader Joes Organic Rice pasta both times I've eaten it. I was late diagnosed with Celiac Disease nearly three years ago, and inadvertently eat something with gluten in it about a half dozen times a year. I'm getting pretty good at identifying what caused the problem, though mostly it's from dining out. Each time, I try and identify the source of the gluten, to prevent it from happening again. Trader Joes has created its own gluten free logo, a g with a sprig on the top right. There is no peer review associated with Trader Joes claim that these products are free from gluten. That is, no one else is testing their claim, and their method and results in deciding that a product is gluten free is not available or open to external verification. In fact they say "no gluten ingredients used" rather than gluten free, something that immediately made me suspicious. Whether they are being naive or just cynical, this is purely a marketing ploy that tricks people into buying their products thinking they are gluten free. It is not helpful information, as they claim. When I delved further into Trader Joes "No Gluten" logo, I noticed that they had a disclaimer "use at your own risk". Correct me if I'm wrong, but this tells me that they don't even stand by their "No Gluten" claim themselves. The USFDA has a proposal to allow companies to call a product "gluten free" if it contains less than 20ppm of gluten. Interestingly, the test for the presence of gluten can be tested to 5ppm. For this reason, in Australia and New Zealand, countries that have the strongest Gluten Free product labeling laws, you can only call a product "Gluten Free" if it contains less than 5ppm of Gluten. That is, you can only call a product Gluten Free if you test it for Gluten using the best available test, and the test cannot find any gluten present. Europe, the UK, USA and Canada either have or are proposing laws that allow products to be called Gluten Free if they contain less the 20 parts per million (ppm) of Gluten. There's a certain obvious common sense approach to Australia and New Zealand's Gluten Free labeling laws, and you have to wonder why any country would propose a law that allows a product to be tested, to be found to contain 5 to 19 ppm of gluten, but still be able to be labeled Gluten Free. This a very strange kind of insanity, and is definitely not in the interest of people with Celiac Disease, the primary buyers of Gluten Free products. Australia and New Zealand have the most stringent labeling laws regarding labeling for gluten containing products, and labeling a product as Gluten Free. These two countries show that it is possible for the labeling laws to really look after the health interests of the gluten allergic and intolerant public. Despite claims by industry "experts" that this approach is unfeasible, our governments need to look to these countries on how to best serve the public, and stop pandering to industry special interest groups and corporate lobbyists. Industry will always lobby government to put in the weakest labeling laws, as this will maximize their profits. I'm not blaming them for that. But I expect my government to look after my health interests before industries bottom line. Write to your member of parliament, your congressman, your state senator, your local media, and tell them that "Gluten Free labeling should be legislated to mean the product contains NO DETECTABLE GLUTEN. Anything else is a scam." Further reading: Mealanie Weir's article about Gluten Free labeling New UK Gluten Free Labeling Laws Latest news regarding USFDA proposed labeling legislation New European Gluten Free labeling legislation Article on Gluten Free labeling laws in Australia and NZ - world's best practices Trader Joes "No Gluten" logo - note, they say use at your own risk
  23. 1 point
    Hi Nancy, What happens to me is my throat actually swells and is noticable as such as though a sudden goiter will start! No kidding and also after several servings of Soy Chocolate milk that I was trying the reaction was the same. I was totally surprised by how quickly the tapioca effect me also my heart races from both. I also am quite dismayed that so many packaged mixes have tapioca and it is even now added to a Goats Milk Yogert that I was buying from Trader Joes. I couldn't understand why I kepft feeling sick untill I read it had added tapioca obviously for a thickener. Anyone else with racing heart and swelling thyroid? Susan
  24. 1 point
    Even after reading here that I could have them, AND reading the label I still felt horrible after eating a regular size one. I think there's something with artifical Flavoring that I can't have, dunno what but I just avoid it now. Easier that way
  25. 1 point
    Hi, I have a sore throat, what is safe to take for throat/cough drops? Thanks