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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
    Thanks so much for the info---that was the one doubt left in my mind about whether my family member has Lyme's or a tick-related disease because she has been on the mend (but is not 100% better). In a lot of ways, her story sounds similar to yours. I'll let you know if I manage to convince her to get tested again . . . she might not listen to me, but I...
  2. Helena
    I love doing personality tests (hmmmm . . . wonder what that says about me ) Well, the test wasn't 100% accurate but was ballpark.
  3. Helena
    Hey Rachel, I appreciate all the info. on Lyme's! As you know, I think someone in my family should be tested. I do have one more question for you---once the disease starts to take hold, is it possible to go into partial remission only to have it start up again?
  4. Helena

    ARCHIVED Celiac Sprue & Doctor Too!

    Helena replied to RKB-MD's topic in Doctors

    I really appreciate the feedback. I think I made the right decision, then---I seem to be responding to the diet so I doubt that immunomodulating drugs would be needed. I just learned, too, that someone else on this board had positive blood tests across the board, went on the gluten-free diet before the biopsy on dr's orders and then had a negative biopsy...
  5. Helena
    Would never, ever have thought that there would be gluten in charcoal. The things I learn here!
  6. Helena
    Gotta love those docs whose explanation for everything they don't know about is 'it's all in your head'! I think it is an ego thing----this way they have an explanation for everything. There's *nothing* they can't diagnose. Well, at least the other docs believed that you shouldn't be eating gluten even if they aren't informed about diagnosing celiac...
  7. Helena
    Thanks for the heads up! I'll be sure to watch the show.
  8. Helena
    Yeah, they're supposed to do the EMA test too. Some doctors also do the antigliadin tests . .. Maybe you should ask for the full celiac panel. See the Celiac Centre at Columbia for info. on the testing (this might be a good resource to bring in to your doc to explain why you want more tests. Dr. Green is pretty much *the* expert on celiac disease...
  9. Helena
    Happygirl, I know you're seeing some specialists at well known research centres---are these the dr's who are telling you that you don't have celiac?!? I could see a GP who doesn't really know that much about celiac doing so . . . but I would expect people who are actively engaged in medical research to listen to what you have to say especially since...
  10. Helena
    I might be wrong on this, but I *believe* imagine soups is made by the same company that makes rice dream and is in the Hain Celestial group? If so, people on one of my allergy messageboards *hate* Hain Celestial----they feel that they are not careful with cross contamination issues and do not give clear allergy info.
  11. Helena

    ARCHIVED Celiac Sprue & Doctor Too!

    Helena replied to RKB-MD's topic in Doctors

    Thanks for your input on this. I was hoping that the two blood tests together would be considered definitive, but I guess the aren't. I suppose that's why my GI doc said that he strongly feels that I have celiac (he seems to have the same view of the blood tests as you do) but didn't actually say "you have celiac." <sigh> Actually, it was my GI...
  12. Helena

    ARCHIVED Celiac Sprue & Doctor Too!

    Helena replied to RKB-MD's topic in Doctors

    My sister had some "twitches" in her leg when she was really sick---I couldn't see anything, though. She just said that she felt like her leg was moving slightly. It isn't clear whether her symptoms would all be due to celiac----I think it is definite that she has celiac (seeing as she had the classic symptoms + some not so classic neurological symptoms...
  13. Helena
    I went through this way before I knew that I was celiac when my allergist put me on an elimination diet. It was psychologically tough---especially giving up sugar, dairy, and caffeine. I ate to deal with cravings and put on 5 pounds. I thought that was pretty funny given the *major* dietary restrictions. (this was the first time I went totally gluten...
  14. Helena
    Strep throat is sounding scarier by the minute. I agree that she should be tested but shouldn't take antibiotics unless it is strep for sure. I looked up colloidal silver---I'd have to do more research on it to be sure about it, but it is interesting that silver is antibacterial.
  15. Helena
    Sure--- probably allergic to latex. (I have had a positive skin test + a positive RAST test. Haven't discussed the results yet with my allergist, though so the diagnosis isn't certain. I do sometimes get small hives with latex, but not all the time, and I have a tendency to get hives anyways so it is hard to tell.) allergic to: all the pollens...
  16. Helena

    ARCHIVED Photophobia?

    Helena replied to Helena's topic in Related Issues & Disorders

    I forgot to recheck this thread since my last post. It's interesting that so many people with celiac are light sensitive. I checked out the lupus site--nope, don't think that that is it. But celiac and possibly some sort of tick-related disease like Lyme's are likely in my sister's case.
  17. Helena
    burdee, thanks for the info. on the probiotics. re: the parasites. yep, my sister was tested. that's what she thought at first too.
  18. Helena
    Thanks so much for all the advice. Will pass it on! And I'm going to copy all this info down for myself for future reference. I didn't realize that strep throat could be so serious. I haven't heard of olive leaf extract before---will have to check that one out. re: the probiotics. My sister has tried some probiotic supplements but has reacted...
  19. Helena
    My sister reacts to antibiotics---she is allergic to some of them, and others just have a bad effect on her body. She *really* doesn't want to take them. But she thinks she has a throat infection (things look pretty bad when she checks back there, but she doesn't want to go to the doctor because she knows she will give her antibiotics.) But her immune...
  20. Helena
    Great post! I like the term "neurological celiac disease." Did you coin it, or is it a term used nowadays? Do you have any references that we might pass on? I have read one article or editorial, rather, in a medical journal suggesting that we need a paradigm shift in our understanding of celiac . . . . that it is time to stop seeing it as primarily...
  21. Helena
    I agree that your family doesn't necessarily need to avoid gluten just because they have some of the "celiac" genes. But that's not to say that they shouldn't be tested for celiac because a lot of people with celiac are asymptomatic. I do think it is a good precaution for everyone *not* to eat a diet consisting entirely of gluteny grains----it is a good...
  22. Helena
    Wow, thanks again for all the great resources. The more I think about it, the more this makes sense in my case. I developed the "reflux" problems after being taken off corticosteroid sprays for asthma. . . .maybe there was an underlying problem that the meds were masking. Those meds do suppress the immune response and shouldn't but *can* have a systemic...
  23. Helena
    Good point about the powder being on the inside. I do wonder if there is a risk . . what makes me wonder is it is known that that powder gets all over when gloves are changed (people who react severely to latex react to the airborne protein in the powder). About the latex allergy----I'd suggest getting tested. Do you have any environmental allergies...
  24. Helena
    The only time I get annoyed when people use the term "celiac" is when they do so as they scrape the meat and veggies off of a bun and proceed to eat it (the meat and veggies I mean). . . or say they can tolerate a little bit of gluten. I haven't actually met anyone like that, but someone in my family knows someone who copes with dinner functions by scraping...
  25. Helena
    I think the decision is wise. With kids you've got to be really careful--especially if they are contact sensitive. One of my sisters broke out in hives and had some breathing difficulty after just sitting in a chair where someone had just eaten pecan pie----we assume she touched trace amounts. Thank goodness my grandparents put the nuts away when we visit...
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