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Helena

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

Everything posted by Helena

  1. Helena
    Oh dear---I thought they were trustworthy. Would you still eat their plain rice? Or would you be concerned about cross contamination even for that?
  2. Helena
    Donna, I had missed this thread . . . so now you can ignore my question in my response to your other thread. I'm surprised your doctor ordered the gliadin tests only. Those are *not* the best tests available these days . .. sounds like your doctor hasn't consulted the recent medical literature! It would definitely be worth trying to see another doctor...
  3. Helena
    Well, it's hard to say because I've been on a "gluten light" diet for several years. (For the past couple of years, all the gluten I was getting was in oats which I ate on the rare occasion. I did have barley and rye a few times too.) But I did have to go back on gluten for the purposes of the biopsy (until my doctor suggested we cancel for various reasons...
  4. Helena
    I've started to take Multisure for women (can buy them at Shoppers drugmart). They're made in Canada by WN Pharmaceuticals. www.webbersnaturals.com 1-800-430-7898 They are gluten free (and I called to ask)---the hydrolyzed vegetable protein is from rice. It doesn't contain corn starch as an ingredient either. But it is not 100% free from corn. I...
  5. Helena
    I don't react to small amounts of gluten (although my villi might feel differently), so I'm not sure how to go about determining what is on my safe list and what is not. I'm hoping to get a sense of what guidelines others follow. I'm informed about what counts as "gluten" in ingredients---"flavour," hydrolysed vegetable protein, etc., and about the perils...
  6. Helena
    Hi Donna, well, I can't tell you much about the numbers . . .but I'm Canadian and I was tested in Toronto. It would matter too which test you are talking about---there is the EMA one and the tTG one and tests for antigliadin antibodies. My GI doctor ran all of them for me, but my sister was tested for EMA antibodies only. If you only had one test, you...
  7. Helena
    That's a relief. I can't rely on my symptoms----I don't react to small amounts (i.e. in that type of rice milk with traces of barley protein). I do buy Lundberg rice sometimes . . . but I buy Nupack because it really cuts down on the grocery bills. I buy it in huge bags. As for the spices, I have heard before the McCormick is reliable (and that Club...
  8. Helena
    I know that Nupack (the company that processes the rice that I use a lot) also sells barley . . . I'm sure the same would be true of some other companies that package rice. Yet from what I've read on this board, people tend to feel that rice is safe. Is this because companies like Nupack process gluten-containing grains rather than gluten-containing flours...
  9. Helena
    Ooh--this thread reminds me that I haven't had fresh coconut for *so* long. As I recall, when choosing one, you're also supposed to look at the "eyes" . . . I'm guessing that any signs of softness/rottenness will show up there first. The liquid evaporates through the porous membrane of the eyes . . . that's why older coconuts generally have less liquid...
  10. Helena
    Just wanted to add---you can roast squash seeds too!
  11. Helena
    I've been making rice/millet porridge for breakfast . . . I just grind the uncooked grain in a coffee grinder and then cook it as porridge. It is cheaper in the long run than buying gluten-free rice cereal. I also use coffee grinder-ground grain in recipes . . . I make this one dessert recipe that I *love* with ground rice, millet, rice flour, tapioca starch...
  12. Helena
    Well, my doctor was originally going to do the biopsy because the blood tests were inconclusive (i.e. tTG positive--"barely positive" he said in my last appt.; antigliadins and EMA negative). But he expected them all to be negative on account of my nearly gluten free diet. So I went back on barley for the purposes of being diagnosed; but I raised...
  13. Helena

    ARCHIVED Celiac Sprue & Doctor Too!

    Helena replied to RKB-MD's topic in Doctors

    In some of the posts, I suspect that the term "allergy" and "celiac disease" are being conflated. A person who is celiac is not "allergic" to wheat unless they also have a wheat allergy. The autoantigen associated with celiac disease is not present in the blood of a non celiac with a wheat allergy . . . . while an allergic reaction may cause some inflammation...
  14. Helena
    Thanks for the suggestions . . . enterolab is out at the moment. . . I can't afford it. I'm getting some tests for nutritional deficiencies though. I did find out on my last visit to the GI that he *did* run the full celiac panel (I should change my signature). . . EMA was negative. I asked him whether it would be worth our while to repeat the blood...
  15. Helena
    Some of this is repetitive from another post . . . but I have a new question . . . My biopsy has been cancelled . . . GI doctor says since there is a slight risk in my case (allergens in the drugs . . . I don't want to do it without drugs) it isn't necessary. He asked me what I would do if the test was negative and I would go gluten free regardless so...
  16. Helena
    As I mentioned in another thread, the biopsy has been cancelled . . . I'm going gluten free. But I wanted to get a genetic test. My doctor said he didn't know they are available (I'm guessing he hadn't heard of them) . . . I said they are available in the States. So does anyone know whether the genetic testing for celiac disease is available in Canada...
  17. Helena
    Good point about the coffee grinder! I'll try cleaning, but they're kind of hard to clean thoroughly . . .perhaps I'd best replace it. Yeah, I guess doctors aren't too up on nutrition and all that . . . still, since the only treatment for celiac disease is the gluten free diet you'd think that they might give their patients info. on that! I'll see what...
  18. Helena
    An update on my situation: I had an appointment with the GI doctor today. Finding sedatives that I can have (without corn or soy as fillers) is really difficult . . . my allergist thinks I'd be okay with some corn, but it isn't something he can predict and wants me to avoid it if possible. Plus I raised the issue that no one can really predict how...
  19. Helena
    wheat allergy and celiac disease are two totally different conditions. it is possible to have both at the same time, but a person with a wheat allergy does not *necessarily* have celiac and vice versa. Yes, both reactions involve the immune system, but different parts of the immune system. A person with a wheat allergy will have IgE antibodies that attack...
  20. Helena
    I can't answer this question from the point of view with someone with celiac (just got my blood tests back last week--I'm new to all this) but on the skin absorption issue in general I'd say that powdery/dry wheat wouldn't get past the skin but that wheat in cosmetic products which are emulsified in oil could. People with allergies can definitely have contact...
  21. Helena
    Thanks! Dr. Green is pretty much *the* celiac disease expert . . . this info. will be very helpful when I have a little chat with my GI doc about the biopsy beforehand (As I mentioned in my other post, I was having gluten for 3 months, but 1/3 of a cup of dry barley every *other* day. That probably gives the villi a chance to grow back a bit on the...
  22. Helena
    Hi Penguin, That's great that the whole procedure is over and you'll have the results soon! Do you mind me asking how much gluten your doctor "prescribed" beforehand. (not sure, but i'm guessing from your post that you were gluten free and then had to go back on gluten . . .? I'm in a similar situation. I've been trying to get a sense of the whole range...
  23. Helena
    Ursula, thanks for the reading recommendations! I agree there are lots of problems with our medical system . . . at the same time, my doctors in Toronto have helped me a lot. I need to keep on top of everything myself though which means a lot of research. I've found that one can get around paying for some things by seeing a doctor in one of the major...
  24. Helena
    [ Thanks for clarifying. I'd be interested in checking out one of those books--which would you recommend in particular? Can't afford it. (I'm in Canada--free medical services here.) No, I was 100% wheat free for 3 years. Was heavily into oats until Oct. 2004 . . . after which point I had them rarely. I tried rye and barley a few...
  25. Helena
    Hi Ursula, Well, I'll be avoiding gluten from now on anyways, but I want to be sure that it isn't something else . . . i.e. I'm allergic to wheat (positive scratch + blood tests) and barley, rye, oats are cross contaminated with wheat. . .so maybe my reaction to these grains is from the wheat allergy. I know that blood test is over 90% reliable if positive...
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