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About lyfan

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  1. It comes down to "trust" and when you are dealing with processed [manufactured] food products, bear in mind that even major and long-loved companies have had issues. With gluten, with salmonella, with all sorts of contaminants and food safety issues. The butcher shop in my local Costco literally cleans down at the end of each day with live steam. Live steam on stainless steel cures a wealth of problems! But apparently a lot of food companies don't go to that effort. Rather than question how trustworthy some company and their "shared" resources might be, I'd get a gluten test gadget, pay the $5 per test it takes, and find out for real just how reliable that "gluten free" label might be. Or, you stick to a "Ted Nugent" diet: If you didn't kill it, if it doesn't have a face, if you didn't dig it out of the ground, you don't eat it. (With apologies to TN and all the animal rights folks both.)
  2. I'm not sure what the OP has in mind. As far as I know, there are no "curable" gluten sensitivity problems. Not yet. While there is a hell of a lot more research and knowledge than there was 15 years ago (when maybe 4 people in the world had any concept of how to diagnose and treat celiac, literally) there are still a lot of open questions. Bottom line, if gluten hurts you, you need to avoid it. Whether you are celiac or not, the "cure" is the same, and there is no cure, just a lifetime of avoiding gluten--until and unless more is learned. I'd be curious to know what the OP thinks is a "curable" gluten allergy. I'd love to be wrong about this.
  3. In the beginning? Hell, I've still poisoned myself ten and twelve years down the line. It only stops when you simply stop eating any processed foods that you haven't scrutinized the label for. Tuna salad in a hospital cafeteria, safe, right? Wrong, they add bread crumbs or gluten commercially as an extender and filler and thickener. Chopped liver? That's just liver and eggs and onions, that's safe, right? Wrong. Commercial products carry gluten fillers again. Oh, and instant coffee? Right, that's just coffee beans, there's no way there's gluten in that, right? Wrong again, some of it is processed on the same (apparently unwashed and uncleaned, yuch) equipment that processes other powdered beverages that DO contain wheat. Some companies actually warn "Processed on equipment...that may contain..." and wheat and nuts and soy are even listed as possibly being in there. Some companies, happily, know how to steam clean their equipment and produce enough of it to dedicate "clean" equipment to just one product. You literally can't assume ANYTHING is gluten free. Somewhere out there, some clever soul is probably adding gluten to bottled water to give it that satisfying texture and feel. Bet on it.
  4. lyfan

    Cleaning Products

    Unlikely that you are so sensitive that airborne gluten will affect you, unless you are cleaning out bakery or pizzaria kitchens. Possible, but very unlikely. You might want to invest in some inexpensive "N95" face masks, sold in hardware stores for keep dust and mist out of the mouth and nose, since you may be kicking up all sorts of things in the dust and spray. None gluten but none good for you, including a lot of cleaning products. I've also never heard of gluten in a cleaning product, it would just make the product "gooey" and other than something like a gel oven cleaner...that would be counterproductive. Not really a good choice for that product either. One thing you eventually learn when you have a gluten reaction: You MUST read the labels on everything. Gluten can be found in tuna fish salad, chopped liver, chicken soup, even some "frozen desert" products. With any cleaning product (any "chemical" that is shipped across state borders)you should be able to read the label, or ask the manufacturer for the MSDS statement. They are required by law to provide that promptly on request.
  5. lyfan


    "Since going gluten free, I've contracted Giardia twice, 3 months apart. Is this common? " I would hazard a guess, because I try to keep up with all the findings from REPUTABLE sources (Mayo Clinic, yes. NIH, yes., hell no!) that there is no causal relationship between going gluten free and contracting giardia. Giardia is a parasite and gluten does not keep you free of it. Your water source, even municipal water systems, can be tainted with it. If you have a dog, they drink street water and pond water, then if they kiss you...they can transfer whatever was in the water. There are all sorts of simple physical mechanisms that can infect and reinfect you with parasites, like giardia. But no one has ever brought up any relationship between giardia and going gluten-free. Your average gp or er doctor would probably be the wrong one to go to for this. You want a doctor who specializes in parasites, in third world type diseases, someone who understands the disease vectors and how you are getting re-infected, assuming you ever cleared out the initial infection. You need a professional to verify when and IF you do clear out the infection in the first place. "When you hear hoofbeats, think horses, not zebras." You got an infection. Nothing to do with your diet, unless perhaps the giardia came from some tainted gluten-free product.
  6. I went through multiple pharmacies trying to eliminate wheat (usually flour or starch used to bulk up and bind the pill) and lactose as well, since I've lost the ability to tolerate that. Three major chain pharmacies were clueless, they each have limited distributors they can buy from. A fourth (the mail order pharmacy that my insurer uses) took a whole week but then gave me specific (NPN?) numbers for the gluten free meds they could find listed as being made. Tried to order then, only to be told by the next pharmacy rep that one was no longer in production and the other was not available from their distributor. SO, they were useless. And my insurer seemed to think that giving me drugs that contained allergens was perfectly normal and acceptable. Then last week I bought a vitamin supplement in Costco, looked just like the one I had been buying online, same company, same packaging. When I got it home I realize each pill was 1/2 the dose. OK, no problem, I can use them anyway. Nope. The larger dose pills had no gluten, no wheat. The exact same product, same maker, smaller dose? Contains wheat starch. It is IMPOSSIBLE to get the drug companies to do what the food companies were forced to do: List the allergens on the package, prominently, and TRY TO GET RID OF THEM.
  7. "I've been there and still might have celiac disease." If you really DID have celiac disease? You still have it, and always will. There is no evidence that the underlying problems (autoimmune failure, leaky gut, etc.) ever can heal themselves, or be healed, beyond the random miracle cure at Lourdes. There is, as best I've been able to find, absolutely no one out there who can say why sometimes an infant will be diagnosed with celiac, which then "goes away" for thirty or forty years, and then comes back with a vengeance. Indicating the underlying problems were there all along--and may have been causing all sorts of damage for all the years. Think carefully about that. Celiac is like radiation poisoning: Every exposure adds up, over your whole lifetime, and pushes your autoimmune system further out of control. Even if it seems fine at the time.
  8. Gee, if only they had ADVERTISED that they had a gluten-free breakfast sandwich. But since they never advertised it, I never had a chance to buy it. No wonder they didn't have many sales.
  9. ONE biopsy? Considering the expense and inconvenience of the whole procedure, one has to ask "Why just one?" Sadly, professional skills are always questionable. You might want to ask them what they actually SAW in the endoscopy and why they only chose one, perhaps everything looked so good and normal that they felt no more were needed. ASK. Biopsy interpretation is also often very subjective, you can ask to have the sample (or digital photographs of it, which should have been taken) reviewed by someone else. Often one expert will say "Normal" and another will say "Grossly abnormal..." and it depends on the skill of the interpreter. In the meantime, if a gluten-free diet makes you feel better--do it. Probiotics like PB-8 will often make a difference. It is only recently that gut biomes and probiotics have even been recognized as having a major role in these things. There are also "non celiac gluten sensitivity" cases, where a celiac diet is the effective solution, even though Celiac is not confirmed as the cause. Getting to the real experts, and getting their best opinions, is not always easy. never be afraid to ask "Why?" or "What?" and the really good docs will always be glad to explain and answer. If they don't have time for that--find a different doc. Go back a mere 20 years, and there may have been six doctors in the whole world who had any grasp of Celiac. One in Australia, one in Japan, maybe two in the US....This is all new medicine, and only recently having any real research with not many answers, yet.
  10. Unless you insist on being the gluten-free gourmet, or you have special needs (like feeding a toddler for a month) it is not hard to have a gluten-free bugout bag. Plain white rice is gluten free. Ask the Viet Cong, one twenty pound sack can feed one soldier for a whole month. One family of four for a whole week. Cheap and shelf stable, available even in many disaster shelters. Not complete nutrition and not exciting, but really easy and cheap DISASTER FOOD. It is also easy to throw some gluten-free non-dairy protein shakes and food bars into a bag, so there's always a higher quality (even if it isn't tasty) couple of meals in a bag, in the house or car. There really are many choices. We used to take hard cheese (edam and gouda balls still commonly found in supermarkets) or peanut butter and jelly (yes, nut allergy issue) and hard salami to go camping. These things are still out there, they still work. I don't need to put together a pricey bag of gluten-free freeze dried meals for a disaster, I'm willing to settle on "This will feed me" if I'm stuck in a shelter for a week. If I'm stuck for a day or two...the protein bars and shakes will do the same thing, no cooking no fire required. It is only a problem if you have to have gourmet food.
  11. Someone decided it needed more "umami" flavor to it. Gluten is added to commercial chicken soups for the same reason, to add the "texture" or flavor of missing chicken fat. I would have thought that plain industrial hygiene and simple steam cleaning of the production line would be enough to prevent cross-contamination of water soluble products like that. I guess that means they just "wipe it down" and don't waste money on cleaning. (Ugh.)
  12. lyfan

    Gluten free Rome

    mBrian- I enjoyed my last Guinness maybe 15 years ago, and in the meantime I have probably stumbled across and tried almost every gluten free "Beer, sort of" brew in the US. There are a few rarities that I've heard of (one in New Zealand brewed from chestnuts!) but not actually met. But I've never even HEARD OF a gluten free beer on tap. Expect that you won't, either. You may find some sorghum beer or "gluten reduced" products in some bars and restaurants, but they are at best "Beer?" and not beer. Not Harp, not Sam Adams, not Heineken...No, expect that you can find gluten-free food, but plan on packing your choice of gluten-free protein bars or protein shakes or other "dog food" for those days and times when you can't really trust what might be served, and really would prefer to simply not be sick all of the next day. A lot of good gluten-free products are made in Italy, so they do exist there. But gluten-free in restaurants is less common, and harder to be sure of. A safe food like rice noodles ay sound good--but the front staff don't realize they're usually cooked in the same gluten-infested water as the regular noodles. Ooops. That's when the dog food is the way to go. Just wave at the Guinness and sigh.
  13. Last week I picked up a small box of Folger's Decaf Instant Coffee, the single-serve tubes. I know, it is a poor excuse for coffee but I specifically wanted something small that wouldn't go stale on the shelf and would be portable for "one shot" uses. Imagine my surprise when I accidentally read the ingredients and saw the incredibly cautious? or honest? warning that it MIGHT contain milk, eggs, alien body parts, and wheat. Well ok, maybe no alien body parts. But a "may contain...WHEAT" warning in what is basically dehydrated coffee?? REALLY?? I can't help wonder what kind of packaging machinery this must share, that some wheat product is being handled along with the presumably constant volume of coffee they are putting in the packets. Just when you think it is safe to rashly assume a food is just a food...I don't know if they deserve praise for being honest, or brickbats for being absurd, in their cross-contamination. No such warning on the Taster's Choice product though. Nestle is more certain that there is just coffee in their coffee. Brickbats? Or kudos?
  14. lyfan

    Hurtigruten Norwegian Cruise

    You might want to contact their executive offices, in writing, and remind them that under nautical tradition, it is considered most improper to poison the paying guests, even if that is by accident, language failure (English is SO rarely spoken) or other good excuse. They might actually take note of this and give their food staff specific training in food allergies, as many of the other allergies won't just upset the guests, they can hospitalize or kill them. The local restaurant may not be able to do better--but cruise lines live and die on their reputation for hospitality and how they treat guests. And given their current understanding of food allergies, I wouldn't go on their ships even if I brought my own dog food [sic] along. When the staff don't know, the only proper answer is "I don't know." That's part of training, too.
  15. Sounds like WAY more than simply celiac. So much so that I would suggest going to one of the real experts in celiac (Peter Green? in NYC, or the U Chicago medical school, etc.) for a more comprehensive workup. If someone has been gluten-free for months and not ingested a sudden gluten surprise, that kind of reaction means something else is wrong. And with the recent research indicating that celiac itself is not the base problem, but rather, there's something else wrong and wheat is simply one of the first ways to trigger a response from it...all the more reason to find someone with national credentials and be sure there isn't something else very wrong. Celiac has gone from virtually unknown 15 years ago, to a mass market phenomenon. There are probably a number of doctors mis-diagnosing other problems as "celiac".