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About AliceW

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  1. Thanks everyone for the good wishes!! This board has been incredibly helpful to me. Feeling this good without any drugs whatsoever feels like being in the Twilight Zone...has any one else had that experience? I feel like I'm still waiting for the other shoe to drop...like it's too good to be true. I guess I'll just have to wait and see if it continues. I also think that I should eventually try to re-introduce the foods I'm avoiding now, just so I can find out what I'm truly intolerant of and what I can eat after I'm healed. I find that the prospect of eating gluten again kind of scares me, though, even though I'm not 100% sure that avoiding it is what seems to be curing me. I am 95% sure that's what it is, and I feel so good that I am terrified of messing myself up again! Are gluten challenges awful? I guess I have no way of knowing how I'd react to one unless I try it... Alice
  2. Just had to post this: I have had NO anti-reflux medication and not a single antacid tablet since Tuesday!! And I'm someone who had been taking daily high doses of prevacid plus multiple rolaids every day for years and years. I've been gluten-free since Dec. 15, 2006--about 5 weeks. Astonished does not even begin to describe my feelings about this. I'd cut out other foods I'd noticed were bothering me (coffee, most alcohol, onion, garlic) and had already improved somewhat before going gluten-free, but this feels fundamentally different. I feel like a different person (or rather, I feel like the same person with a different stomach!). It feels like my problem is not so much under control as it's just almost gone. I'm still taking some herbs--licorice, slippery elm, and aloe vera--for my remaining occasional faint heartburn, but I almost think I might not even need them pretty soon. Constipation is gone and gas is almost gone (!!!!), too. I swear I'm going to send Dr. Fine at Enterolab some flowers or something. This is amazing. Alice Now gluten-free, dairy-lite, caffeine- and alcohol-lite, and I haven't felt better in years!!
  3. I believe you only started the gluten-free diet in mid-December, and have been on and off of it since then? If that's the case, your blood test results might still be positive for celiac (if you have it) if you just keep eating gluten for another week or two. So it might be worth getting the blood tests, at least. That way if they are positive, you can have one more clue as to what your diagnosis is, and then you can decide whether or not you want to do the biopsy. If they're negative, that might be more suggestive of a non-celiac gluten intolerance, and then you can just go your merry way being gluten-free and feeling better. I know how you feel, though. I'm starting to feel so much better on the gluten-free diet that if the improvement continues, I'm going to be afriad to do a gluten challenge, even though it's important to me to confirm that it really is gluten that is my problem (scientific method and all that). Alice
  4. Thanks for the suggestions, guys! I'd heard of the Triumph cards, but didn't know whether or not they were any good. Now that I have an endorsement I think I'll order them.Thanks again! Alice
  5. There seem to be a lot of books out there about navigating restaurants when you are gluten-free, but I'm not sure which one one to try. I live in New York City and love to eat out in ethnic restautants..mostly Japanese and Indian, but also Chinese, Thai...but I am currently afraid to go to any of those places because they use so many sauces and so many unfamiliar ingredients, there is often a language barrier with the server/chef, etc etc. I'm currently avoiding restaurants other than sushi places and seafood places (they seem easiest because they offer some "simple" foods), but I hate the idea of having to avoid so many places I used to love indefinitely. Any suggestions?? Alice
  6. I really hope this is true, because I adore sake! Also, does anyone know if this issue affects the safety of miso, too? I think miso uses starter cultures too. I wish I could find a guide to the gluten status of asian foods, because I love them and have been mostly afraid to eat them since starting my gluten-free diet. Anyone have any thoughts?? Alice
  7. I think it's a very good idea to get the blood tests, so that you have a better sense of whether you have actual celiac disease or simply a gluten intolerence. As you're well aware, celiac disease is very serious...if it's not treated with a strict gluten-free diet it can lead to osteoporosis, cancer, etc. Do be aware, though, that if you're already gluten-free the results may not be accurate. My own approach was to take a if/then approach: I was tested by enterolab, and I decided that if the results were positive, I'd 1) get a conventional blood test for celiac, and 2) do a trial strict gluten-free diet for at least 3-4 months. If the blood tests were positive, I'd get a biopsy. I know that occasionally someone will be blood test negative but biopsy positive for celiac, but statistics do suggest that that is unusual. For me, getting the negative blood tests was proof enough that I don't have actual celiac disease (the biopsy is invasive and nasty and I'd prefer to avoid if if not necessary), but it is a personal choice. I'm finding that the gluten-free diet is helping, and that fact, along with my enterolab results, suggests to me that I have a gluten intolerance. My next step is going to be to stick with the diet strictly for a few more months, and then do a gluten challenge. If eating gluten causes me to backslide, I'll have my answer. In my opinion (and this is ONLY my opinion), the only difference between having a gluten intolerance and actual celiac disease is the potential seriousness of the consequences of eating gluten. If I had celiac disease, I would view it as potentially a matter of life or death to avoid gluten absolutely strictly. With a gluten intolerance, I think you can let the very occasional slip-up slide without seriously endangering your health. I think this is something everyone has to work out for themselves, however. Anyway, good luck! How's the gluten-free diet working for you, BTW? iI think you strated around the same time I did. Alice
  8. Nu-world foods (google them for their online store) makes wonderful gluten-free amaranth-based cereals. I like their basic original Amaranth-Os--they ahve a great crunchy texture and are full of fiber. They are unsweetened, so they are bland by themselves, but with a teaspoon of maple syrup they are yummy. they also have a Cocoa Snaps cereal that is DELICIOUS but too decadent for everyday in my opinion. I like Mesa Sunrise, too. Alice
  9. Hi Jerry, I had very similar result to yours: fecal antigliadin 27 units; fecal TTG 33. My conventional celiac blood tests were normal. I started a trial gluten-free diet last month (on 12/15) and seem to be responding amazingly well to it so far, but I'm withholding judgement for the time being. Good luck! Alice
  10. I"ve posted before,but it's been a while, so here's my background again (sorry this is so long!): Perfect digestive health until contracting a severe case of mono at age 19; daily reflux/heartburn require high doses of medication for the entire 15 years since. Intermittent diarrhea during my 20s; given a diagnosis of irritable bowel syndrome. Constipation and gradually worsening severe bloating and gas in my 30s. A few months ago I decided I was going to try to get myself off reflux drugs. I made various lifestyle changes (gave up coffee, cut way back on wine, didn't eat within 3 hours of bedtime, etc) which did help, but only up to a point...I imporved somewhat and then reached a plateau. I then somehow (I don't remember how at this point) got hold of the idea that a gluten intolerance might be responsible for my GI symptoms. So, I got tested by enterolab, and my results were strongly positive for anti-gliadin antibodies and TTG. However, I then got conventional blood tests for celiac, which were firmly negative. So I started a gluten-free diet a month ago despite the negative blood tests, figuring I had nothing to lose. For the first two weeks I felt the same; during the third week I felt briefly terrible, and then for the 4th week I have felt...amazing!!! I have had almost no reflux or gas for the last 3 or 4 days. It is astonishing. I can hardly believe it. Rather than taking medications and still feeling bad, I've taken only one or two rolaids all day, and I feel fine. I am almost afraid to hope that it might continue. My stomach is flat, I don't have embarassing gas, and most amazingly, I do not have heartburn!! But the difficult part is that I don't know what to attribute the change to. It might be the gluten-free diet, or on the other hand maybe it's just that I am finally healing as a result of the anti-reflux lifestyle changes I've made?? It would be different if I'd been formally diagnosed with celiac disease, but as it is I still feel like I'm feeling around in the dark. I think I should stick with this for a few more months, and then do a gluten challenge and see what happens. That way I'll know for sure. If it will make me feel this good I'll happily stick with the gluten-free diet forever, but on the other hand I wouldn't want to if I don't have to. Does that seem reasonable? Just had to share! Alice
  11. Thanks for the suggestions, guys! I'lll check out the Magick Botanicals stuff. Also, what was the specific type of Ouidad gel you use, TinkerbellSwt? I used to use their Climate Control and loved it, but it has wheat proteins (ie, gluten) and wheat amino acids in it. Alice
  12. Hi everyone, Can anyone suggest a good gluten-free hair gel for curly/frizzy hair? Even though I'd initially decided not to worry about my hair gel, I've decided to try to using a gluten-free one for a while. My hair is dry and tends to be very frizzy, so I need something that will encourage it to curl nicely instead of becoming like a halloween wig as it dries. Thanks! Alice
  13. Hi FF, Yeah, because I love to cook I know that sauces are usually thickened with flour . (I thicken them at home with cornstarch now. ) But the fish yesterday was in a light, clear broth, and I DID ask whether or not there was ANY flour in the recipe, and they said no. What else could I have done, beyond choosing something that seemed safe and then asking to be sure?? I guess the next step would be not to eat out ever, or to ask for absolutely plain meats and vegetables when I go out, but the thought of doing that forever that makes me want to cry. I live and work in New York City and don't have children, so my social and work life is absolutely FULL of restaurants. I can't see staying out of them completely without turning my life completely upside down. Do any of you eat out sucessfully on a regular basis? Do you have any tips I should know about? (Also, to those who suggested that the cheese might have been the problme: you may be right; I thought of that too after the fact. I guess i'd better experiment with diary avoidance and see if it helps.) Thanks again to everyone to being so helpful. I wish i had more to contribute in return, but I am pretty clueless at this point. Alice
  14. Thanks for the feedback, everyone. I am feeling much better now. It was just strange; the second week gluten-free I was feeling great, and then I felt terrible again for no apparent reason. I wish I had a crystal ball I could look into and just know for sure what I can eat and what I can't! It is so hard to tell, because it seems like reactions can be delayed, and some foods are OK but only if not eaten in combination with other foods, etc. It feels really overwhelming sometimes (as you all know well!). Some of it may not ever have anything to do with food; for example, I have a hiatal hernia, so I'm sure some of my GERD results from that. I just want to get rid of my reflux and the terrible gas pains I get way too often. I am thin, but my lower abdomen is often so bloated that my stomach is nowhere near flat. I always start out feeling perfectly fine every morning, and then by about 2 pm (after lunch, seemingly no matter what I eat) I am bloated and gassy and reflux-y, and that lasts until I go to bed. Sometimes I think that if I could just stop eating althogether I would feel great. As for the possible glutening in the restaurant yesterday: I think i did everything right, but maybe I could have missed something. I had two small pieces of cheese and a few grapes from a cheese plate (taken from the other side of the plate from where the slices of bread were), then an arugula salad with pears and balsamic vinaigrette. For the main course I had poached fish with lentils, fennel, and tomato. I called ahead to ask the chef if there was "any flour or bread crumbs of any kind or any soy sauce" in the entree and salad, and he said no. ?? Can you think of any possible CC issues I might have over looked? Anyway, thanks again for all the support. Alice
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