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About lyfan

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  1. I asked four pharmacists to help me find gluten and dairy (milk sugar) free meds. Three were helpless. The fourth turned up some meds, but when I asked the same (major mail order insurer's vendor) pharmacy to provide them, they said those meds had been discontinued a year ago. Pharmacists can't afford to invest the time that real medicine requires. What we need is an FDA requirement to print ALLERGENS prominently on the label. As it took so long to get required on foods.
  2. Milk has no inherent danger to celiacs. The problem is that as the intestinal villae are damaged by celiac disease, and they are the portion of your tract that processes lactose, a celiac will normally be unable to process lactose until and unless the villae have healed. So if dairy products cause no discomfort, you are processing them well enough, they will do you no special harm in any case. Oats are a whole other badly understood issue. Normal agricultural practice is to rotate crops in order to allow the soil in fields to recover from what one or another crop depletes. And with farmers, it is normal to rotate wheat one year, oats the next, in the same field. No matter how well the wheat is harvested, there is ALWAYS going to be some wheat going to seed and growing back in the following year--and that means there is always going to be some wheat in your oats. UNLESS the oat farmers have been very careful and make a point never to rotate that field with wheat. The ones that are certified organic and gluten-free from usually higher priced smaller farms? Will be doing that. But no large commercial grower is going to do it that way. And of course, there is going to be cross-contamination if the two are processed in the same plant or on the same line. So, Quaker or Kellogg's will always be a risk. Someplace like Bob's Red Mill, much less likely.
  3. Everything that I have heard (read) about autoimmune disease in general, suggests that any and all exposure is cumulative. Even if you don't feel a reaction, your body is still reacting, and your autoimmune system is still taking damage. So, if a processor says "same line that makes flour" and some test, any test, shows there sometimes is in fact some contamination...Isn't it really best to simply avoid those products, completely, unless you plan to literally test each bottle or batch of them? And with the price of some spices, I could see investing the $5/shot that a testing device will cost. But for the ones where there are alternative sources that are certified gluten-free, no cross contamination possible...Why not? Why not avoid adding incremental damage to your immune system, considering all the nasty things that can go wrong with it as you age?
  4. lyfan

    Delayed reaction...help!

    +1 on how it could be many other things. The OP didn't say what they ate, or why they think there was gluten in it. After a week...intestinal parasites sound more likely, simple bad hygiene or bad water. Even in the US we get this from contaminated lettuce, melon, chicken, all sorts of things. Time to see a doctor, have stool samples tested.
  5. +1 on seeing an ENT and checking into nutritional factors. A *good* ENT should be aware of them and able to go over your blood tests with you to check that out. Vertigo isn't "caused" by celiac per se, so whatever the problem is, your ENT should still be able to find it. I'm not such a proponent of B12 shots. If your intestinal damage prevents B12 absorption...sure, the shot sounds good. But sublingual (under the tongue) B12 works just as effectively. In the EU national health won't cover B12 shots. They're not appropriate or necessary. In the US, funny thing, the doctor gets paid well to give them, so our doctors swear they are the only thing that works. And yet somehow, in the EU and Canada, they do perfectly well without them. Getting a B12 shot is a good way for your doctor to perform a highly compensated procedure, but totally unnecessary. (Patients often "feel better" knowing that a nice doctor in a white coat did something special and gave them a shot, to be sure.)
  6. lyfan

    Dunkin' Donuts Coffee...

    Ask Dunkin "Corporate" how that cold brew is made. It is very possible that they are using a coffee extract, processed on cross-contaminated equipment. (Folger's instant says this up front; Nestle uses dedicated equipment and says they can't have that problem.) It is also possible, if you are very sensitive and they have a lot of flour dust in the store, that you are being affected by flour dust either in the store, or that has settled out into the brew. Bottom line, if it hurts you? "Don't do that." and it won't hurt you. 7-11 makes better coffee anyway.(G)
  7. 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.)
  8. 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.
  9. 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.
  10. 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.
  11. 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. Outbrain.com, 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.
  12. 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.
  13. "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.
  14. 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.
  15. 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.