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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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. Cashews are pretty high fat compared to almonds. Perhaps a mix of both to make the milk to start? Sometimes it takes a while to adapt to the higher fat and can cause loose stools at too high a quantity. The causative quantity would be individualized though. Just figured I'd mention it in case the experience comes up. Good luck to you!
  2. I agree about the sulfites possibly being a culprit if you haven't had extensive allergy testing to rule them out. With the kind of reactions you are having it really sounds like you need to find a good medical care provider to help you sort more things out, if possible. On a side note, I've always reacted to breyers ice cream. Never really got into the why because I stopped trying to eat it many years ago before any of my allergy testing, etc. OMG the chocolate covered whatever they were called that they had were good though, but after reacting every time I gave up. I don't react to other carefully chosen ice creams or dairy. Hope you feel better soon and figure out the culprits.
  3. I have to respectfully disagree with "anyone who is sensitive can go out to eat..." I have eaten at the restaurants that tout gluten free menus that many celiacs of whatever sensitivities recommend and each time I've been glutened. Before anyone says it's another food intolerance, sorry, nope, I know all my food intolerances and everything but gluten is easy to avoid. I don't like having the "flu" for 3 days and fatigue for a week by trying out these places. I expected to be perfectly fine, so it wasn't a matter of me convincing myself I'd be sick either, for any that would suggest that. I do find this: "To say you are too sensitive to eat out usually means multiple intolerances, which makes dining out extremely difficult or you just choose not to eat out, maybe from lack of resources." to be a broad negative generalization of people whose experiences don't agree with your own. I agree with GFM that people who have more visible sensitive reactions are harrassed in this forum, which is why I rarely post though I've been reading for a long time. This is what I find is the hardest to deal with as a super sensitive--the fact that other celiacs of whatever sensitivities invalidate my experiences just like so many doctors and "regular" people invalidate celiac with "it's just in your head." It's about like what the Puritans who came to America to escape religious persecution did to the Native Americans because they didn't hold the same beliefs. The best thing I find about having become super sensitive is that I get reactions so that I can work to eliminate the culprits and continue to improve my health after having been misdiagnosed for over 20 years and losing all that time.
  4. Update: It took a few days, but I got her # and texted (didn't call because she never answered or returned my calls in the past)the information as well as reputable links. I've not heard anything back either through text or phone or her brother in all this time. I can only pray that she bothered to look at the links and passed on the information. It s**ks that there is no way for me to reach the parents directly and that even if I could, the knowledge would probably fall on deaf ears. It's so much easier to believe that everything is ok.
  5. Traveling With Celiac

    Vegas can be hit or miss. I was there this past June and had done my research ahead of time and thought I had everything under control. The restaurants near where I was staying that I found online that had gluten-free menus were no longer in existence when I got there---other than the $$$ expensive ones. Are you staying on the strip? Will you have transportation? Do you have to watch your money? Can you eat shellfish? The high end restaurants on the strip like Mesa Grill have gluten-free selections but they are $$$ expensive and many of the choices are shellfish. The whole foods store is not far from the strip if you have transportation. The In-N-Out Burger has a double protein burger served with a lettuce wrap and a dedicated fryer for the fries---supposed to be a really great option for those with transportation or used to using public transit. There's supposed to be a couple little grocery stores, one on the south end of the strip near the ABC liquor but I never found it. Caesar's was nice enough to provide a refrigerator for me at no charge because of the celiac, but they don't have microwaves in the rooms or provide them. Serendipity 3, in front of Caesar's had a grilled chicken salad that was awesome. I wouldn't trust the food courts in the casinos. I tried to find something safe and paid for it. Also, it didn't seem like many of the restaurants in walking distance that weren't the expensive ones had no clue about gluten free, in my experience. I'd pack some protein and crunchies in your checked baggage for those days you might not be up for the search for safe food, unless you have transportation or are comfortable using public transit in unfamiliar cities. Some say they've had good luck with some of the buffets, but I wouldn't be willing to risk a buffet, especially on a trip. Hope this helps! Have a great trip!
  6. Given, the information contained herein is for those with celiac who have super sensitive reactions. This is the super sensitive section and does not apply to everyone. The information I seek to verify with reputable references will help me and other super sensitives make better educated choices as to which products we may cautiously add to our lives rather than having to be concerned over most every choice we make. It is not paranoia but a wish to educate ourselves to get/stay healthy and continue to expand our lives. I have no doubt whatsoever that I had a gluten reaction to that aspirin because after it was removed my gluten reaction was removed as well. I have no problem with other medications I have that contain aspirin, as I mentioned already so it's not like there isn't the possibility of a safe source. Thank you for the link; however, it did not provide in itself or its references what I would consider a reputable source. While the "volunteer" (yes, the "authors" are "volunteers") who provided this information http://en.wikipedia.org/wiki/Maltodextrin on Wiki is either knowledgeable or good at copying and pasting information, I couldn't go in to see anything about the author or what her other 548 posts were because clicking on the author brought up a donation seeking page. Also there are at least 500 revisions of this particular page that can be found if you click the view history tab---any information on Wiki is only as good as the references used. In our school system Wiki is not an acceptable reference for any research papers due to how Wiki content is provided. Just to give it a fair shot I went in and read the references provided---none of which were FDA or scientific inquiries directly related to gluten and it's regulation. From: http://glutenfreeliving.com/labeling.php "A food label should contain all the information you need to figure out if that food is safe on the gluten-free diet. You need to avoid: Wheat The Food Allergen and Consumer Protection Act says labels have to list the top eight allergens, including wheat, in plain English whenever they are an ingredient in packaged foods regulated by the FDA." This specifies packaged foods and doesn't mention drugs?!? And if as quoted below, something is highly processed and rendered gluten free, do they have to label it/do the companies understand that? I can't find any information on that anywhere. http://glutenfreeliving.com/labeling.php "Advisory labels In addition to the ingredients list, you may find advisory labels on a food package. Advisory labels are not regulated and companies use them voluntarily. They give consumers more information about the possibility that a food could be cross-contaminated by an allergen during processing." So, according to this source, advisory labels are voluntary and not regulated. http://glutenfreeliving.com/ingredient.php#maltodextrin "Maltodextrin Maltodextrin is gluten free. It can be made from a variety of starches, including corn, potato, rice or wheat. However the source does not matter because maltodextrin is such a highly processed ingredient that the protein is removed, rendering it gluten free. If wheat is used to make maltodextrin, "wheat" will be appear on the label. Even in this case, the maltodextrin would be gluten free." Same source, with no references provided, asserting that "wheat" will appear on the label and even if wheat is used it's so highly processed that it is "rendered gluten free." The other link that had anything other than a definition of maltodextrin, http://www.sugar.org/other-sweeteners/other-caloric-sweeteners.html#maltodextrin does say: "Additionally, today's commercially important maltodextrin products are produced from corn, potato or rice. Unlike the other starch sweeteners, the undefined term "maltodextrin" can be used in an ingredient list no matter the original source of starch." Again though, there is no FDA or scientific reference cited. And it says "the undefined term ""maltodextrin"" can be used in an ingredient list no matter the original source of the starch." So this one disagrees with the other one. So back on the Wiki page: "In the US, this starch is usually corn." It says USUALLY and no references are cited. On this same Wiki page: "It is recommended that celiacs or patients with severe intolerance to gluten continue to avoid food with maltodextrin." Barley and Rye could be players here according to the mention of "cross-contaminated by an allergen during processing." in the advisory label quote above since WBR are all to be avoided by those with celiac and they may be in the same facility since the advisory labeling is still voluntary. I was going to ask for a link to the law, but then decided to go searching for myself. It's actually the Food Allergen Labeling and Consumer Protection Act of 2004. SEC. 206. GLUTEN LABELING. Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services, in consultation with appropriate experts and stakeholders, shall issue a proposed rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods. Not later than 4 years after the date of enactment of this Act, the Secretary shall issue a final rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods. It's almost 2012 and yet this Act is not really in effect yet as it was supposed to be. Here's a link with information and a link to the FDA Federal Register Notice from 2011: http://www.glutenfreedietitian.com/newsletter/2011/08/08/concerning-the-fda%E2%80%99s-federal-register-notice-on-reopening-of-the-comment-period-on-the-proposed-rule-gluten-free-labeling-of-foods/ The proposed limits for "gluten free" labeling are 20ppm which may be fine for some or many with celiac but is definitely not fine for those of us who are super sensitive. There's more interesting reading here: http://www.fda.gov/Food/LabelingNutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm106042.htm with an Industry Association Rep stating: "Incidental additives such as processing aids (soy lecithin) that result in inconsequential levels of protein from major allergens should not require labeling." and the response to that was: "While soy lecithin is discussed with the report, this specific issue is outside the scope of this report. FALCPA includes procedures for obtaining an exemption from labeling where certain conditions are satisfied. A Health Professional stated: "Reading food labels are part of a life-and-death decision for the food-allergic consumer. Precautionary labeling - "may contain," "processed on the same line" - forces families and patients to contact the manufacturers to try to gauge the risk. Most families decide on zero tolerance, limiting dietary choices. We know that severity of reaction and the dose required to elicit reactions varies from person to person. If thresholds are established, health care professionals need to know what to tell patients. If food-allergic consumers lose faith in the integrity of the labels, they will be left with a practice called "trial and error." " The response was: "Labeling issues are outside the scope of this report, as are issues about outreach and education should any threshold be established." So basically, what I'm coming up with from reading all this is that unlike with peanut allergy, people with celiac who are super sensitive or react to under the 20ppm that the US industry is pushing, even though other countries have testing and lower limits, need to be aware that at this point 20ppm is "gluten free" and that is too much for us. So, in the end I found a reputable source I was looking for. I thought others who are super sensitive would benefit from my sharing what I found here since this thread is about "labeled gluten-free but really not."
  7. Hi, could someone provide a reputable link for why this is so? I know my food allergies/intolerances and have been tested for all the other stuff---lyme, thyroid, ad nauseum. And earlier this year, unexpectedly, I had a gluten reaction to plain aspirin where I don't react to it in other medications. There were no other changes in my diet or personal products at the time so the culprit could only have been the aspirin. The only suspect ingredient when I went back and checked after reacting was the maltodextrin. Maltodextrin isn't in the products that I usually use that give me no trouble. It's possible that perhaps the product was made in China like so many things in the store it was from, I guess. Or it was made in a facility that also processes things with WBR. I don't think I have the bottle anymore to check for sure though---I do know there was no labeling about "may contain wheat" or "processed in a facility that processes WBR" as I do read labels for that as well as other names that I am aware of for gluten. Oh, and does anyone have any reputable links that address whether medications have any requirements for labeling about wheat or gluten? I know that the FDA is working on standards for food, but do those standards extend to medications as well? Thanks for your help!
  8. Still Angry Sometimes After 2 Years

    Sandsurfgirl, boy can I relate to the angry! For the most part I try to just get on with my life as best I can, but sometimes when I think of why my life is the way it is it makes me very angry. You see, I was a sickly child with no energy and high anxiety, among other issues. I tested gluten intolerant on top of other food intolerances but nobody ever explained what that meant to me or my parents (so far as I know), and after being on an extremely limited diet for a time and not seeing any improvement I went off the diet and my parents didn't think twice about it. Not one doctor suggested that I be tested for celiac. After that I was taken to "mental health professionals" and my lack of energy and anxiety were declared to be "in my head." Another round of testing later in life and I tested gluten intolerant among other things yet again. Again nobody explained what that meant and after I got better on an elimination diet and supplement regimen I went back on wheat. I had to stop the supplements because I couldn't afford them any longer. ($300+ a month) I didn't notice any changes in the beginning but over time I was getting progressively worse. I eventually ended up bed or wheelchair bound because of pain and lack of energy. I'm finally diagnosed celiac and starting to get some semblance of a life back by going gluten free. So, yeah, sometimes I get very angry because I never got to lead the life I wanted and too many people, doctors included, blamed/blame it on me and my head. At least in my life I see a direct relationship between gluten intolerance and celiac. Too bad nobody else did before it took away the life I might have had.
  9. Oh, and Shauna, I had to laugh (I needed it too) about educating the doctor. I can't even educate my GP and he's relatively fresh out of medical school. I've been with him since his internship about 7 years ago. For those wondering, he's the best of the bunch of doctors I've been to in the past 20 years, sorry to say. At least he doesn't treat me like everything is all in my head. I won't bore you with my experiences with the different specialists and such I've seen, too many of you have had similar experiences. Thanks!
  10. Thanks everyone, I wish it were just about politeness because I have no problem overcoming it when necessary. I don't even know the parents or their names so there's no way to even get to them directly or I would try. My SIL works for doctors and is one who thinks their opinions are, well, you know how it goes. I only see her once or twice a year and don't even have her phone number. My relationship with my husband is shaky at best and he rarely thinks my gluten issues are anything more than in my head. I'm glad I shared because, even though it may do no good, I've been in debate about asking him for SIL's number so I could talk with her privately. When I shared with her about my gluten issues in the past, she was of the school that if you don't eat bread, crackers, etc. it'll be fine. You know the kind, if you don't eat the crust the pie is ok. Just pull the croutons off the salad and so on. Even though I have gluten issues I don't have issues with oats (medical testing to back it up), yet I've had issues since I was a kid with what she said he was eating with no trouble. Other than what I've shared here I have no information on how the doctors reached the opinion that he's outgrown it. Yes, I'm going to try to get her number so I can talk to her on a day when I'm not the outsider at a family function. I'll at least give her the information I have and a couple of links if she'll take it. It kind of feels like the starving kids in the world---I know it's going on but I'm in no position to make a difference. Thanks again. I needed to get it off my chest somewhere where I knew I'd get support. I'll do the best I can.
  11. Interesting on that one. I stopped using aluminum pans at all, but especially with acidic foods because I was told the aluminum would leach out. My reason for it was because my testing from the doctor showed an overload of aluminum in my system.
  12. Sandsurfgirl, thanks so much for the mention of the name of that book so that it got out here for us to see. Most of my peripheral neuropathy has gone away for the most part just from going gluten-free. I still have weather and stress related flareups, but not so much anymore. I do have either an old back injury or a bone spur that sometimes knocks me out of commission. The doctor told me it was diaphragm muscle, but previous chiropractic xray showed the bone spur. Improper lifting is what sets it off most of the time---sometimes either forget or don't have option. I'm not in any financial position to go through another round of doctor testing that always comes back inconclusive or within normal range. Not in any position to buy the book either. You don't happen to know if it's one that libraries might have? It's doubtful my local library would have it (small town) but maybe city libraries? Yes, I could let my fingers do the walking, and I will if there's a possibility, but the libraries I'd be checking are out of my phone area. Thanks for any information you can give, even if it's that you don't know.
  13. I just got back from my DH's family TG. A couple years ago 1 of my SIL's grandbabies was diagnosed with near fatal complications of celiac. It took doctors a while to figure out that it was gluten causing the almost fatal condition--I won't get into the graphics. Anyhow, it came up in conversation that the doctor is saying the child has outgrown celiac. Apparently the child can eat something that family thinks is wheat but it is actually oats---don't know if it's on safe list here or not. Needless to say, everyone jumped on board with that---the parents are extremely young so it's pretty much a given they'll believe whatever the doctor tells them. I really like my SIL but due to other circumstances I am not in a position to say anything because then I'll just give another reason for others in the family to consider me the crazy outsider. So, the child has healed some over the past couple of years. Since the child was asymptomatic so far as they knew, until the near fatal complications, I fear it's only a matter of time and they may not catch it until it's too late if they go back to the SAD diet. Thanks for listening. I needed someplace to share this.
  14. Thank you for the responses and link to McCormick's where they make that statement. I imagine most people do research to form their opinions. It's too bad McCormick's doesn't back up their answer with information on the testing they do to substantiate their claims. Having grown up around farming there's just too many different farming practices for me to agree 100% with their claim without it being backed up with testing. The information hasn't been scientifically proven. I will agree that the spices themselves are naturally gluten free, but if a company is going to call something gluten free I would expect them to actually have testing done to back it up. Gluten free is getting to be too big of a business and there's still not any kind of standard for labeling. Thanks again.
  15. Gemini, that's great about McCormick's. Could you provide a link to where that information came from? I like to double-check information since many things on the web are opinions or passing on of opinions. I went to the McCormick's site and couldn't find anything about gluten free or wheat warnings. I figure I just didn't know how to phrase my search right to get the the information. Thanks.