AristotlesCat

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About AristotlesCat

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  1. AristotlesCat

    Gluten Free Coffee

    This isn't what is going on. I was fine on the previous brand of coffee. People here really should stop diagnosing people with things remotely.
  2. AristotlesCat

    New England Road Trip with Celiac Daughter

    My aim wasn't to be rude. If that is what it was, I apologize. But I was surprised by your recommendation and response (not just there but also on another thread we were commenting on). I think there is bad information being spread on this forum by posters who have an outdated view.
  3. AristotlesCat

    Gluten Free Coffee

    Thankfully creamer isn't an issue for me. I only use it occasionally and since I've been on the look out for the problem, I've only been taking the coffee black until I get to the bottom of things.
  4. AristotlesCat

    Gluten Free Coffee

    Thanks for the information. I just want to clarify something here as well, since it didn't occur to me this might be what people are zeroing in on: Peripheral Neuropathy is not an unusual celiac symptom. If some of the other posters were trying to suggest that my PN was caused by some other condition I have, let me assure them: my neurologist, my GI physician and a celiac specialist on my care team all concur (and in communication with each other) that the PN is linked to the celiac, not something else. And that it is being caused by mild exposure through something I have introduced into my diet in the past couple of years.
  5. AristotlesCat

    Gluten Free Coffee

    The cross contamination issue came up in other threads with some of the same posters. My statement about that was taken those other threads into account. I am saying there are a few key posters downplaying the risks or possibility of cross contamination. I also think saying flat out it is virtually impossible that I had a reaction to the coffee is odd. Like I said, I've whittled down the possibilities with the help of my Doctor (and I dietician). The preponderance of evidence points to the coffee which is why I wanted recommendations for other brands I could try. Honestly this isn't an aspect of the post I expected to have to defend. I just wanted suggestions and found myself trying to justify my reasons to posters. And like I was saying, my argument wasn't that I am getting CC every time I have a K-Cup. It is that I was having some exposure from this brand and that was causing celiac symptoms. What really annoyed me though is even when people conceded my point it was with great reluctance and done in a way that made it sound like my case was atypical, caused by something other than celiac or I was crazy. My celiac is pretty typical. Most celiacs will react to CC. That isn't controversial.
  6. AristotlesCat

    Gluten Free Coffee

    And one last time I'd like to point out, all I asked here was for some coffee recommendations.
  7. Everyone is different, that sounds like a big reaction. Still I've had some unusual reactions to gluten exposure myself in the past, and even something as seemingly minor as the cramping can get pretty intense. I would definitely agree with cyclinglady that getting the antibodies test soon is a good idea (at the very least you get a data point to have handy should you go to an allergist to rule out the shellfish allergy). While celiac can be very serious and the reaction we get to gluten can be long-lasting, an allergic reaction can be much more dangerous and like a lot of posters, some of the things you mention make me think that is an additional possibility here. It is also possible you can be having two reactions (you could have been accidentally exposed to gluten but also been exposed to an allergen). I suggest finding a good allergist but mention that you have celiac to them. I would still go to your celiac specialist, just I would see an allergist on top of that to for the sake of being thorough. If you are in the Mass area, I can recommend someone who has been very good about ruling out my other illnesses (like Celiac) when checking for allergies. I am not saying this was an allergic reaction, just allergic reactions are serious enough that I would probably ask about getting some skin tests just to make sure you haven't developed a shell fish allergy or something. Whatever happened it sounds like it was a frightening ordeal. I hope you start feeling better soon.
  8. AristotlesCat

    Pizza - Gluten Free

    Pizza is one of the hardest ones to do. This is something where it is wise to lower your expectations and to consider making it yourself (because if you find a crust you like, there is a god chance the cheese or sauce might not be to your taste). I have yet to find a pizza brand that gets everything right. But don't despair, there are some tasty options provided you modify your expectations a bit. Udis used to make a great gluten free pizza, but they changed it so it went from being something like a north eastern style thin crust italian pizza to an awful pizza that tastes like it was made at the same place Henry Hill got his egg noodles and ketchup from. Some people do like the new taste, so I would say it is still worth trying. But I really can't get into the change. Against the Grain isn't too bad. They kind of cheat a bit the way they use this gelatinous goo in the center of the crust to create the illusion of chew (at first you won't notice but after a few you'll catch on). Unfortunately their cheese blend leaves something to be desired (tastes nothing like the classic three cheese italian blend). But their pesto pizza is wonderful. Again, gelatinous goo in the crust, but it is pretty good. Three Bakers actually makes a pretty good pizza. Haven't had it in years though. Fraschetta isn't bad either (though just be careful as the box for the gluten free one looks pretty similar to the regular pizza). Better Bread Company makes a very good gluten free pizza but is hard to find around here. I love their pepperoni pizza. I think of all of them, Better Bread company probably comes the closest to a real pizza for me. But it isn't perfect (and I think Against the Grain Pesto is probably my favorite out of everything I've mentioned).
  9. I would be pretty careful about rotisserie anything in a supermarket or megastore in the US if it isn't labeled gluten free.
  10. They don't have to certify. But the gluten free labeling rules say if it says gluten free on the label it is supposed to be under 20 parts per million. There are good reasons for this. It just takes a small amount of gluten to trigger a reaction in the body for weeks. If they can't take steps to occasionally check, to verify that their source isn't introducing gluten, and to make sure they are not accidentally introducing it through something like a cleaning agents or one of their workers eating a powdered donut, then they shouldn't be putting gluten free on the label. Yes if you want to call it gluten free you should take the time to make sure you are actually providing people with gluten free food. They shouldn't just slap 'gluten free' or 'naturally gluten free' on the label because they think it is all good. And the FDA guidelines were clear on this point: naturally gluten free still is the same as labeling it gluten free----it does not absolve them of any responsibility to ensure they are not introducing gluten. And if you think this isn't a problem, keep in mind that before the labeling rules were introduced, something like 5-10% of gluten free labeled foods tested positive for gluten.
  11. AristotlesCat

    Gluten Free Coffee

    I was diagnosed with celiac about seven years ago I think. At the time it showed up on an endo and I tested positive for antibodies. I was having tingling in my legs and feet and other symptoms. Went on the gluten free diet and my antibodies went down, my symptoms went away. No more tingling feet. This lasted for years. Then about two years ago symptoms returned. My legs not only began to tingle but the neurologist tested the nerves and found I had developed peripheral neuropathy. I can't feel my feet and my fingertips are almost completely numb. I've started testing positive for antibodies and it shows up again on an endo. The doctor is nearly 100% convinced something with gluten has simply worked itself into my diet and if I can weed that out, I'll be fine. I trust my doctors. I don't trust random posters on a forum to diagnose my medical condition. Especially comments about my Crohns. My GI doctor is my crohns specialist and my crohns is stabilized. None of the Crohn's activity is responsible for the neuropathy or the vitamin issues (I have perianal crohn's so this is much lower down the digestive tract and quite under control).
  12. AristotlesCat

    New England Road Trip with Celiac Daughter

    Fair enough. But some celiacs lie to themselves about the actual level of risk when dining out. I am very distrustful of anyone who thinks nothing of drinking prepared coffee at a restaurant or who doesn't seem to pay much heed to the risks of cross contamination. Cross contamination is pretty well established as a problem for celiacs and the people here appear to be operating on decades old ideas. Also, I wouldn't put your health in the hands of an anonymous poster on the internet no matter how much you respect them. Forums are a great place for people who know how to sound convincing. But they are still often wrong. A great poster who you like can still have bad or wrong ideas. And that makes it even worse because people tend to follow respected posters on forums like this.
  13. AristotlesCat

    WholeFoods Salad Bar

    This doesn't surprise me. I used to work at a whole foods (in the fish and meat departments). We had a practice there of putting penko bread crumbs on older fish and frying them then selling them as snacks. This on its own is fine (the fish was still good and the frying made it taste great). But we used the same surface for spreading the penko as we did for filleting and cutting all the fish. In the meat department there were similar practices and quite a bit more use of bread crumbs (for things like certain hamburger). I can tell you first hand, there is no way this counter was cleaned enough to prevent cross contamination with the fish. Anyone who bought fish from us was most certainly getting some gluten in their cut. This was about eight years ago so things may have changed since. But I am pretty wary of whole foods myself these days.
  14. AristotlesCat

    Gluten Free Coffee

    Also I do want to point out, because I think it is important, that I started a thread asking a community called celiac.com what coffees they would recommend, if they knew of any certified gluten free coffees. I don't think anyone recommended a single brand except Ennis_TX. Most of the responses were either people telling me coffee should be fine, people suggesting my problem wasn't celiac related, etc. I don't need remote opinions about my medical condition from random posters on the internet. I just wanted coffee brand recommendations. This is not what I expected to get on a site devoted to celiac disease. I think there is a lot of outdated information being spread here.
  15. I am sure the reason varies from company to company. But I have contacted many the use the label and have frequently encountered the mindset among several that they don't have to take any special precautions because the food in its raw state is naturally gluten free. That is a very dangerous mentality if you are putting any kind of gluten free labeling on the item.