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lyfan

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by lyfan

  1. lyfan
    Kate, I have young family who are anesthesiologists. Like any other technical job, just because you have the papers doesn't mean you know how to do the job. Or, you're having an off day, which can be deadly for a patient. And there are some issues that are not even taught in medical schools. My old friend literally got lost for three months after being hit...
  2. lyfan
    So nice when the crackpots and nut jobs call themselves out. I learned a long time ago to carry my own "dog food", and there's always something stashed in my car or my bag in case I wind up at mealtime without another safe meal. Worst case, you miss one meal. You won't starve from that. You may be cranky, but you won't starve.
  3. lyfan
    There's something I don't understand about blood protein tests. For someone who currently has been gluten-free, and ignoring the cost issue, wouldn't the proper procedure be to DO THE TESTS to get a baseline of the protein levels, THEN do a gluten "challenge" and RETEST to see what difference there is in blood protein levels. Regardless of whether someone...
  4. lyfan
    "He had no interest in...what could be causing the stomach aches. " There are a lot of medical practices these days that are set up as factories, processing patients. It is all to rare to find a doctor who takes the time to LISTEN and treat a patient with respect. Sometimes, you just need to say outright "Doctor, can you take care of this or should...
  5. lyfan
    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...
  6. lyfan
    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...
  7. lyfan
    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...
  8. lyfan
    +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.
  9. lyfan
    +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...
  10. lyfan
    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,...
  11. lyfan
    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...
  12. lyfan
    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...
  13. lyfan
    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...
  14. lyfan
    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...
  15. 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...
  16. lyfan
    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...
  17. lyfan
    "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...
  18. lyfan
    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.
  19. lyfan
    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...
  20. lyfan
    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...
  21. lyfan
    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...
  22. lyfan
    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...
  23. lyfan
    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...
  24. lyfan
    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...
  25. lyfan
    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...
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