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kamarie

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About kamarie

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  1. Thanks for the links, Deanimated Marcus, that's the first I've heard of a rectal biopsy, which sounds really scary but I'm glad to have another option to research.
  2. Cavernio, this page explains why I'm thinking about diagnoses: http://celiaccentral.wordpress.com/2012/10/03/going-gluten-free-before-the-diagnosis-do-or-dont/ AFAIK, if you have Celiac disease, doctors are more aggressive about checking for nutritional deficiencies and conditions related to having a severely damaged intestinal tract. One person told me that they will also monitor your IgE (something like that, I don't know all the terms very well yet) to make sure you aren't eating gluten you don't know about. But I haven't talked to an actual MD about this, so I could be wrong. For me personally, it would help me determine how strict I need to be. Although a gluten-free diet helps a lot, it hasn't made me 100% better. Is it because I'm not really 100% gluten-free and I only think I am, and I'm still sick because of cross-contamination? Or is something else causing my remaining health issues? If a doctor could test me and say, "Well, there's no evidence you've consumed any gluten at all for the past 6 months," then I'd know there are other issues to investigate. All of this could be done without a diagnosis of Celiac, and I am definitely trying my best to coordinate it all myself and do my own experimenting, but it would be a lot easier if I had a diagnosis and a cooperative, knowledgeable doctor (I'm resisting going into a tirade about my awful experiences with gastroenterologists, lol)
  3. That's what I figured. I was just hoping for some miraculous new science I hadn't yet heard about. Ah well.
  4. My apologies if this is a repeat topic--seems like it would have been asked before but I'm not seeing it. About 12 years ago I saw a doctor who didn't really understand Celiac disease. She advised me to get a blood test for a wheat allergy and when it came back negative, she suggested an elimination diet. When I noticed how awful I felt when I added gluten back into my diet, she said, "Great! Now you know what's wrong--stop eating gluten." So I did. You all probably see the problem with this plan--when I later learned about Celiac disease and how important it is to be tested for it so you can monitor your progress, I discovered that I could not be tested because I haven't been eating gluten for so many years. I'm told that if I want to be tested, I'll need to eat gluten for three months. !@#$ no! No way will I purposefully invite that kind of misery into my life for the sake of a diagnosis. So I've been going along eating gluten-free, never knowing if I have Celiac or not. But still, I would like to know for sure for various reasons. My family wants to know as well. So my question: does anyone know of a way around this situation so I could get a real diagnosis? I fear there isn't, at least not with current medical technology.