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  1. Hello,


    Has anyone had a recent experience with Trader Joe's gluten-free English muffins?


    I've seen posts from 2009 about them, but nothing more recent. I suspect I've had a reaction to them but was not sure at the time... Because I don't know whether or not I had a reaction to them, I'd hate to rule them out if others have had good experiences. The label does not disclose anything about the production equipment and whether it's shared. 


    Also, anyone know when TJ's will officially eliminate its "no gluten ingredients" labeling? 



  2. Hi all,

    In March I realized (thanks to this forum) that my celiac testing was misinterpreted and actually seemed conclusively positive. My doctor would not provide an official diagnosis even though I presented the evidence I had found (again, thanks to this forum). Instead of taking the time to consider the studies I provided, she said I should see Dr. Fasano or Dr. Green. I went ahead and made an appointment with Dr. Fasano, and it's scheduled for Tuesday. However, now that I've waited almost 6 months to see him, I'm not sure what to expect or how to prepare besides bringing in copies of my records. Could really use some advice, because I feel a bit emotional contemplating what he might say.

    I've been on a strict gluten-free diet since March and overall have been doing quite well, but I'm still very much experiencing the ups and downs of finding my body's new equilibrium. In fact, just about 2 months ago, I began to experience some circulatory issues (episodes of *freezing* and chills, when I've always been the runs-warm/perspiring type), and I was diagnosed with Raynaud's this past month. It was a bit scary to be diagnosed with that AFTER going gluten-free, and I just saw a rheumatologist who is trying to rule out other connective tissue issues. (Those results won't be ready until after my appointment with Dr. Fasano.) Also, I'm experiencing quite a few food sensitivities (tree nuts, most dairy), so again, I'm on a mostly positive trajectory but am a little nervous that I don't yet know everything that's going on.

    Ever since March, I've adopted the mindset of acceptance that I have celiac disease. (That is a difficult reality to accept, but after reading the evidence, I've been convinced.) However, I was gluten light when I had the testing done, so my results were not clear-cut. Part of me has hoped that Dr. Fasano would still be able to give me a definitive answer -- because I do satisfy the 4-out-of-5 diagnostic criteria he established. I've also hoped that he would be able to test my zonulin levels to diagnosis me a different way (if zonulin levels remain high gluten-free, then it's celiac). However, now I'm concerned that he'll throw up his hands and say that there's really no way to tell after all and that I'll never know unless I do a gluten challenge. Gluten makes me feel terrible, so I am not going to do a gluten challenge...but basically I'd like a definitive answer so I know just how careful I need to be, especially when eating out and going to friends' houses (and needing to communicate the importance of cross-contamination).

    Sorry for the long post, but I want to make sure I have a realistic expectation of the clarity Dr. Fasano will be able to provide. Does he conduct tests that are not yet commercially available (i.e. for zonulin or anything else)? Or will it be more of a check-up where he'll take some follow up labs and see if anything is high? Will he possibly test for other things besides celiac? I'd love for him to test me for food allergies/sensitivities, but is that what he does? Any words of advice from others who have seen him or Dr. Peter Green?

    Thanks very much, (and again, sorry for the long post!)

  3. Hello everyone.

    I have been experiencing joint/muscle stiffness and foot pain resembeling a stress fracture (right on the top of my foot). It is very noticable when I stand from sitting and it will hurt at times while Im resting. I have been gluten free for approx 2 weeks.(I have made some wrong choices as I am just learning, so my diet hasn't been 100% gluten free).I was wondering if anybody else has experienced this same discomfort, and if it improved after going gluten free?


    I had random stabbing pains and muscle cramps in my feet shortly after going gluten-free. It would happen when i was just sitting there. I found that massaging my feet and rubbing them over a tennis ball seemed to help, at least with the cramps.

  4. I'll definitely be following this thread. As a newly-diagnosed celiac with a new job, I am conscious of the all the newness...It's tough moving along two learning curves at once, and it's particularly challenging to know how much information to share. In my case, I have needed to mention it to my manager because there were several instances when she or someone else brought in snackfood as an act of friendliness, and I didn't want them to think I was snubbing them. Now, have I opened myself up to an HR issue because of that? Who knows. I doubt it. If anything, celiac is covered by the American Disabilities Act, so I would hope there would be protections granted to us.

    Also, in my case, I will have to travel several times a year for about a week at a time. On those occasions, like you, I will be working longer hours. There's the added challenge of traveling to an unfamiliar city...with coworkers...and I am nervous about it. I am a nice person and try to go with the flow, but when you can't eat at a restaurant with coworkers, what do you say? Sure, we can go there, but I won't eat...or just opt out and miss the bonding time? Eat rice cakes and peanut butter at midnight in my room? Having a protein drink would be a big boon in case dinners end up being less than satisfying.

    Good luck to you, and please do try to get some rest!

  5. Thanks for the update. That will be one I will avoid also. I do tend to go to Pepsi most of the time except for an occasional root beer float.

    I never drink soda but I had a Virgil's root beer while on vacation and oh boy--did that taste great. Gluten free. No HFCS...(but pure cane sugar) I bounced off walls for an hour or so from the sugar buzz :D

    Raven and IH, I thought I had already replied to your follow up posts but I was wrong...

    As it turns out, I was seriously craving a root beer float when I got that root beer...but you can be sure I will get Virgil's next time. :P

  6. Try and relax until you hear from the company. Chances are really in your favor that you were not glutened. While barley malt does not have to be listed most companies will list it if it is there.

    Thanks for your help, ravenwoodglass. It definitely helped me adopt a wait-and-see attitude. I heard back from the company today. Though the root beer does not have gluten in its ingredients, there is a pretty high risk of cross-contamination. The sugar water is made in the same tank as beer. Yikes. They clean before producing the sugar water, but who knows to what extent gluten is eliminated from every nook and cranny. I am really sensitive right now - hopefully temporary during healing, but we'll see - and I always avoid any products made on shared equipment; so that brand is totally out for me. Really nice of them to actually get back to me though. Hopefully this information will be helpful to others.

  7. You aren't in the US? In the US, I haven't seen any soda pop with malt. If it had malt, it would list it. Not sure of the rules in your country.

    I am in the US. I didn't think that malt had to be listed. Are you saying I probably don't have anything to worry about? I'm bloated after drinking it (about half of it), but that could just be because I never drink soda...just had it today because it was hot...and it could be because of the stress of not knowing if it's safe.

  8. Can anyone tell me whether root beer is generally safe or not? I just drank half a bottle of Old Dominion Root Beer before rethinking proprietary extracts listed on the ingredients (Root Beer Extracts #214, #79-400)...although no obvious gluten ingredients were listed, I'm concerned that those two extracts could contain gluten via malt.

    As a side note, I am so depressed that I could not just relax and enjoy a root beer on a hot day without suddenly realizing my possible mistake. Any advice would be much appreciated. I already contacted the company via phone and email, but no info from them yet. So far, the posts on here discuss caramel color, which I know should be fine...but I can't find any info about malt and root beer.

  9. I don't think you are going to encounter a gluten problem with mayo; soy, yes, but not gluten. If the tuna had a dedicated spoon and then used a clean knife and gloves, then I think you did all that you could do. Sometimes we just have to take a risk - for some of us the risk of not eating is greater than the risk of a small amount of cc, though no cc is of course the goal. I think you did fine.

    The degree of concern amongst our posters usually matches their degrees of sensitivity. Those who are the most sensitive to gluten worry the most. :)

    Thanks a lot, mushroom. It is so helpful to get feedback from someone who has developed "celiac judgment". I am really trying to figure out how safe is safe enough without driving myself batty. On some level I guess i'm really struggling with the concept of varying sensitivity in celiac. Do we all get sick from the same amount of gluten, or do some really need to be more careful than others? Is it that, ultimately, we all have the same auto-immune response but some are more in touch with it than others because their auto-immune fallout is more apparent (i.e. they have worse symptoms)? It doesn't help that I'm in the early healing phase. With my body still feeling a bit all over the place, i think it adds to my confusion...

  10. Hello,

    I am newly-diagnosed and am traveling for work right now, and it is apparent that I'm still navigating the learning curve!

    I tried to bring some gluten-free snacks with me but found myself at the train station, preparing to head home, and still needed to eat lunch. I had a choice - I could buy junky gluten-free snacks at the Hudson News, or I could look for a more balanced/nutritious option at one of the train station's restaurants. Wanting to keep my blood sugar level and get an actual meal, I went for the latter and headed to a deli that looked very clean on the inside. Everything seemed very contained, and the prep area seemed very clean. They had some tuna salad that they said was gluten-free and contained only tuna, mayo and celery. Okay, so far so good, maybe...but maybe I should have double-checked the mayo? It seemed like they made the tuna in-house, but should I have double-checked that?

    I then asked if the tuna salad was touched with a knife that was used to make sandwiches and explained that I needed to be extremely careful about CC. They said that no knives came into contact with the tuna salad and explained that the salad was only touched with a metal spoon that was dedicated to that item. I made it doubly clear that any cross-contamination would be unsafe for me, and they seemed to sort of get it but without a true understanding of gluten intolerance. I bought it and ate it but was uncomfortable -- such a Catch-22 -- and felt like maybe I had made an unsafe decision, OR that maybe I was actually worrying too much about something that was safe.

    So, my question is whether I did a good job scoping out the deli and asking questions, or if I was sloppy, possibly for the sake of getting a balanced meal...please be honest. I really appreciate your feedback, as this is a real source of stress and confusion for me right now. Some folks on here never eat out; meanwhile, others seem to navigate the eating-out world rather well and seem so comfortable. Being newly-diagnosed, I feel scared about eating out but realize that my lifestyle is such that I will sometimes have to do so and need to develop the judgement to do it safely. Thank you for your help!

  11. Just wanted to share some good information about the Jack Black line of lip balms. I just spoke with the manufacturer, and they are gluten-free!

    The products contain Vitamin E/Tocopheryl Acetate, which I have learned can be derived from either wheat, soy or corn. There wasn't anything noted on the company's site or elsewhere on the Internet, so I contacted them directly.

    The person I spoke with put me on hold to confirm. When she returned, she stated that all of their lip balms are gluten-free. I was extremely appreciative and suggested that they update their website with this information since there are many people who could benefit from this info! This is one of the few lip balms that has worked for me, and it has SPF 25, so I am really excited I don't have to give it up! :)

  12. Thank you for your replies. Still no response from the manufacturer, but I am positive the product contained oats. I combed the internet for different pictures of buckwheat, and it just doesn't resemble what is in the product...definitely oats.

    On Oskri's site I saw a mention of an incorrect label for one of their other products, so I think they also have a labeling error with this product and, adding to the problem, have not offered sufficient transparency regarding the type of oats the product in fact contains. No mention of oats, much less whether they are gluten free. Very disappointing. I would exercise caution in consuming this product. Will definitely update this post if I hear back from them.

    I made another attempt (the third) to contact Oskri. Once again I received an answering machine (during normal business hours) and left a message expressing concern that their product is not labeled properly and made me sick. Their lack of responsiveness says it all in my opinion...

  13. I should also mention that in addition to these symptoms, the last few days I have been experiencing what I believe to be some other symptoms related to nut sensitivity. My tongue has been tingling after eating certain nuts (almond, sometimes with peanut butter, once after eating walnuts, and another time after eating pistachios). So, could the body tingling and weakness be related to that instead??

  14. Hi all,

    I have been gluten free for about three months now and have been making great progress. However, I believe I got some gluten exposure last week (through accidentally eating oats), and I have been waking up every morning with one or both of my arms asleep. They aren't 100% - they are about 60% asleep with a lot of tingling. The left side is worse, and the last few days it has been noticeably weaker during the day. It takes more effort to type on the keyboard and my grip and dexterity have suffered. Also, the circulation in my legs seems off; it doesn't seem like the blood is circulating as well, and once or twice they have been slightly cool to the touch.

    Since these are symptoms I have had when glutened before, I am assuming I just need to ride this out and maybe get some moderate exercise to get my blood flowing better. However, since they are a bit more sustained than they've been in the past few months, I wanted to run the symptoms by anyone who may have some additional guidance. They are odd, scary sensations, and I really don't know what kind of doctor I would see for them. Since it seems episodic, I feel like no one would be able to observe them and it would just be a waste of time and money.

    Thanks a lot for any insight you may have.

  15. Thank you for your replies. Still no response from the manufacturer, but I am positive the product contained oats. I combed the internet for different pictures of buckwheat, and it just doesn't resemble what is in the product...definitely oats.

    On Oskri's site I saw a mention of an incorrect label for one of their other products, so I think they also have a labeling error with this product and, adding to the problem, have not offered sufficient transparency regarding the type of oats the product in fact contains. No mention of oats, much less whether they are gluten free. Very disappointing. I would exercise caution in consuming this product. Will definitely update this post if I hear back from them.

  16. Today on a road trip, I picked up a bag of Oskri brand Cashew Granola, which was labeled "Gluten free!" and the ingredients were listed as follows: Buck Wheat [sic], Cashews, Sunflower Seeds, Cranberries, Date Syrup, Chicory Root Extract, Rice Protein. (these same ingredients are also listed on the company's site: http://www.oskri.com/en/details/120/granolas/all/1253/cashew-granola/box)

    Well, boy do I feel like a sucker. Being newly diagnosed, I realize I still have a lot to learn, because about an hour after I got them, at which point I had eaten half the bag, I realized that they clearly had oats in them, but since they hadn't been on the list of ingredients, and because everything was clustered due to its being granola, I hadn't been paying attention to each element enough to notice it. Well, I checked online to make sure that buckwheat doesn't resemble oats, and it does not... The granola definitely contains oats, and they were not listed on the package. I have emailed the company but am trying to figure this all out. My stomach is extremely bloated, more so than it has been in months, but I don't have the other symptoms I usually get when glutened. Plus, I've checked on the forum, and many seem to eat Oskri's other products...and I even found a celiac blogger's account of eating the exact same snack without any mention of the oats. (http://www.glutenfreemike.com/oskri-product-assortment/#.T6RaoPF5mK0). Does anyone have any thoughts on or experience with this particular item?

    Thank you!

  17. Eat healthy fats. Egg yolks, flax seed, nuts, olive oil, oily fish, maybe even lecithin from a health food store. Your nervous system needs fat to build myelin and recover. Omega-3 fats can be great for anxiety and limit omega-6 fats to try to get down to 2:1 omega-6:omega-3. Too much omega-6 causes inflammation and most Americans get crazy amounts of omega-6 from vegetable oil in processed foods.

    I would also avoid aspartame and foods high in MSG like fast food, bouillon, soy sauce, miso, Parmesan cheese, and salty processed foods. There is no point eating excitotoxins while you are trying to heal nervous system damage.

    I don't have bad afternoon slumps if I don't eat starchy foods for breakfast and lunch. I usually have eggs and fruit for breakfast and meat/veggies for lunch. I usually have some nuts and fruit/veg for a snack mid-afternoon when I get a little hungry but I'm not hypoglycemic at that point.

    This is great information, Skylark. Thank you. Omega-3s are even more integral to regeneration than I realized! And I will follow your other advice too re: blood sugar and the fats ratio. Maybe I'll start hardboiling a half dozen eggs each week and having them on hand as a good quick breakfast and/or snack.

    The neuro issues are miserable. Unfortunately neuro damage is much slower to heal. I know your Dr. said it was neuro toxicity, but I think of both as being the same. ;)

    It might be a good idea to start a detailed food log? Write down what you eat, with rough amounts of how much you've eaten, and log any symptoms you feel. By having a way of looking back at what you've eaten and onset of symptoms it's easier to put the pieces of the puzzle together. Most food reactions are delayed, but the tingling tongue kind of concerns me, because that seems like more of an allergy symptom than an intolerance?

    It took me quite a while to figure out that MSG gives me ear fullness followed by migraine, dairy makes me anxious and I get insomnia after eating it, and I get really crabby the next day too. Soy makes me nauseated. That's just an example of how your symptoms can be different for various foods, and different in when the symptom shows up.

    Fats are important in your diet as Skylark says. Fish oil is great for the brain and coconut oil feeds the brain just like glucose does. It helps regulate blood sugar too. I use it like butter on cooked veggies, and to brown meats.

    When you first posted your symptoms my thought jumped to B1 deficiency, but your Dr. tested that and it's at a good level. I don't know if taking it that close to when the blood was drawn skewed the the results or not? Just be aware that stress of any kind can make your body burn through B vitamins and keep taking your supplement.

    Best wishes to you!

    Bubba's Mom, thanks for this guidance about the food log and the fats. I'll make a more concerted effort to log everything. Also, just bought some coconut oil and am looking forward to using it! You had me at "Feeds the brain." :lol:

    Thanks again to you both for sharing this info and your experiences!! This forum is such a boon to recovery, and I am so grateful for it.

  18. It sounds like you're doing the right things? Only thing I would add is...have you considered the possibilty of an additional food intolerance? Some of us get those symptoms from soy or dairy. They seem to be the most common offenders?

    Funny you should ask; the last two days I have had some tingling on the tip of my tongue shortly after eating. It lasts for about two hours. Yesterday it was after eating eggs and greek yogurt for breakfast. The day before, I'm not sure what caused it, because I was eating things (popcorn, quinoa pilaf with mushrooms/broccoli/onions) that I have eaten since then without an issue. I have not been disciplined about keeping a food journal, but with this new tingling it's probably a good idea.

  19. I was recently DX'd (positive DGP-IgG but biopsy negative) and have experienced a number of neurological symptoms, including some that emerged 2-3 weeks after becoming celiac-safe with my GFD (which was about a month and a half after going strictly gluten-free but still being a little exposed to cc).

    To rule out MS and some other things, I have been going through some follow-up testing, and so far everything, including the EMG that tested for nerve damage, has been normal. My neuro said that she thinks my symptoms, some of which have or are slowly resolving but which have really run the gamut (tingling, ear fullness, migraines, anxiety, blurry vision, lack of mental focus, jumpiness in my hands and feet, etc...), are due to neurotoxicity, not nerve damage. They did some additional vitamin testing, and my folate, B12 and thiamine were all normal.

    Vitamin B1 (Thiamine), plasma: 39 (ref range: 9-44 nmol/L)

    Mathylmalonic acid, serum: 163 (ref range: 87-318 nmol/L)

    Vitamin B12, serum: 492 (ref range: 200-1100 pg/mL)

    Folate, serum: >24.0 (ref range: >5.4 ng/mL)

    (I had taken my daily vitamins, which included B supplements, about an hour and a half before they drew blood, but the doctor said that would not skew the results.)

    So my question is this: Although I'm thankful not to have vitamin deficiencies or apparent nerve damage, neurotoxicity still sounds fairly ominous, so what can I do to feel better? My energy levels are still really in flux, and my afternoon slumps can be pretty bad. Neurotoxicity seems like such a broad term, and in the context of gluten, it's unclear whether it is more temporary and related to residual gluten in the system, or if it is more permanent. My current course of action is to foster general wellness: take supplements at reasonably low doses to support regeneration, eat whole foods, get a reasonable amount of exercise and try to be patient. But, if anyone has any more specific guidance about neurotoxicity, I'd really appreciate it. It's hard to know whether I am doing enough and/or have realistic expectations.


  20. That may have been me. Despite getting my B-12 up high, I was flagging BIG TIME for months after DX. I was just dragging myself around, which was weird because I had been very wired, jittery, full of nervous energy and a total insomniac on gluten/ before DX.

    I read about Folate levels being tanked in celiac and asked the doc for a blood test. There it was.

    Prescription-strength Folic acid for 3 months--and it came up--- and my fatigue resolved.

    IrishHeart, I am going through that wild gear shift right now. Good to know it's not just me. Before I pinpointed my gluten issues, I felt like a hummingbird -- plenty of energy, but increasingly nervous, and had unexplained insomnia; now post-gluten, I've been weighed down by some unexplained fatigue, but it varies. Some days I feel like my old self, but other days it takes a lot of effort to do the basics. Afternoon slumps have definitely been much worse.

    They tested my B12, folate and thiamine levels last week; B12 was normal but they'll let me know the values and other results tomorrow. Wonder if folate will be low... I don't need to feel like a hummingbird again, but I'd like to avoid feeling like a sloth. :D (Though at least they do seem happy.)

  21. Thank you for taking the time to share these excerpts, Skylark! :) My alumni access to online research can be a bit testy.

    This makes a lot more sense. While I've been focused on the false positive angle, I realize the more important issue from a broader testing perspective is how sensitive IgG DGP is and whether it will detect celiac at various stages. Alone, IgG DGP satisfies the former but possibly not the latter.

    This sounds like a major advance in that, between IgG DGP and TTG-IgA, there is not only strong sensitivity but also the ability to detect celiac over time, including early on. Let's hope they soon develop a diagnostic timeline that fully maps out the testing required to effectively detect celiac at all stages...but maybe they're already there with this combo.