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Wandering Hermit

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Everything posted by Wandering Hermit

  1. Wandering Hermit
    That is something I have never understood about this board. On the dozens of other boards I have read, only the most critical 5% or so of threads get pinned. Here every thread is pinned. Totally defeats the purpose and concept of pinning threads. ???
  2. Wandering Hermit
    The specificities of these assays are not 100%. That means false positives are always a statistical possibility. No test, of anything, is perfect. I've also read that AGA IgG can be high for conditions other than celiac disease. I read that in a journal article I found while browsing. This Open Original Shared Link says IgG AGA found positive in 10...
  3. Wandering Hermit
    As someone who performs difficult measurements for a living (I'm an engineer in a high tech company) I can assure you that no test is perfect. I don't care what you are trying to measure, you can always screw it up. As for the contention that a positive blood test means that you have celiac with 100% certainty, I refer you to this document on this very...
  4. Wandering Hermit

    ARCHIVED Wary...

    Wandering Hermit replied to AmandaD's topic in Doctors

    Yeah, I definitely am viewing this as temporary. I will not get my hopes up. This is my 'farewell tour' to certain restaurants I love and foods I crave.
  5. Wandering Hermit

    ARCHIVED Wary...

    Wandering Hermit replied to AmandaD's topic in Doctors

    Ok, fair enough on Enterolab. As for my challenge...thanks for asking. It has been about 2.5 weeks and I don't feel any different at all. Have not gotten sick or anything. BMs are the same as they were off gluten. Of course I know this does not mean anything. It will be interesting to see what the blood tests say in a few months. But if nothing else, I...
  6. Wandering Hermit

    ARCHIVED Wary...

    Wandering Hermit replied to AmandaD's topic in Doctors

    Exactly. My question exactly. What is the sensitivity and specificity of his tests? Until I see these stats, I don't trust any of it. As far as I am concerned, the fact that there are nothing but testimonials on his site which say "thank you for telling me I have celiac" and none that say "thank you for showing me I don't have celiac disease" raises...
  7. Wandering Hermit
    It helped me initially but eventually I learned what I could and could not have and rarely used it.
  8. Wandering Hermit
    And here is the other frustrating aspect of this. Kaiti gave a good list of the various blood tests. We know that each of these tests has an associated sensitivity and specificity. But what are these stats when the blood panel yields mixed results? If you are AG IgG positive and tTG negative, what is the sensivity/specificty for these COMBINED results???...
  9. Wandering Hermit
    jajus100: These are great questions. I was wondering the same thing myself. I'm trained as a physicist so I am always questioning the veracity of the stats I come across related to celiac disease. This is the other one that bothers me: on the blood tests I want to know what the measurement error is. You cannot measure or quantify anything without the...
  10. Wandering Hermit
    I just eat low lactose. Have not tried total elimination of dairy, that is possibly a future experiment. I appreciate everyone's comments and concern. I understand that there may possibly be other issues with gluten beyond celiac disease. I also understand that I am taking a risk with the challenge, in the sense that there is some probability that I am...
  11. Wandering Hermit
    Well, if I thought there was a really good chance that I would be miserable on gluten, I probably would say NO to the challenge. But like I said before, my gluten-free diet coincided with an abrupt change to my milk intake. And I know milk makes me sick, as I have done a 'milk challenge' - now it is time to do the gluten challenge in the same way for...
  12. Wandering Hermit
    Well, I agree, that the world would be a better place if all gluten grains disappeared overnight! celiac disease or no celiac disease, I'd feel that way, just because I know how tough being gluten-free is. And even if it turns out I am not celiac I also deeply care and understand celiacs and try to help them in any way I can. But I would never force this...
  13. Wandering Hermit
    Rachel: If the testing is negative but I *feel* better gluten-free than non-gluten-free then I will go back to gluten-free, no question. I'm a bit of a pessimist, so in the back of my mind I think I am a celiac. I am resigned to it. But I want to see a clear demonstration of it. There are several: 1. Clear difference in symptoms w/ and w/o gluten...
  14. Wandering Hermit
    Tiffany: 1. The strain it puts on my family. Examples: Wife: The boys really want my homemade pancakes. Do you mind if I buy some flour? Me: Don't you dare open a bag of flour in my kitchen and get that crap everywhere. What are you trying to do, shorten my lifespan? Boys: Can we all go out for pizza to celebrate (something)? Me: Sorry son, I...
  15. Wandering Hermit
    Thanks for the responses. I guess I would tend to agree with you guys, except that there are confounding factors in my case that make me think the challenge is a good idea: 1. My tTG has always been normal, even on gluten. Only IgG antigliadin was high initially, but IgA was not. Also I am not IgA deficient, that was checked. From numerous sites, I...
  16. Wandering Hermit
    My advice is to see a specialist. My GP really screwed me up.
  17. Wandering Hermit
    Well, my endoscopy came back normal for the biopsy, which proves nothing. I am going in for a colonoscopy on Thursday. The gastro said to go back on gluten for at least 3 months and see what happens. I am partly excited and partly unhappy about this. It may at least mean 3 months of getting to 'say farewell' to certain foods. Boy, they really screwed...
  18. Wandering Hermit
    I would say my first time I was fully awake. It was a truly awful experience. 5 minutes of continuous gagging. So it is nice to finally see what it is like when it is done right. It was a piece of cake.
  19. Wandering Hermit
    Just be sure to tell them that you wish to be well-sedated. I am so happy because I was really dreading it - and I literally remember nothing at all about it.
  20. Wandering Hermit
    Well I just got back from an endoscopy about 2 hours ago. It went SO much better than the last time! The squeeky wheel gets the grease. I complained about how my previous endoscopy did not involve enough sedation. This time they doped me up so good that I don't remember any of it! Not the part where you bite down on that mouthpeice, or the...
  21. Wandering Hermit
    It's nice to hear that folks had decent endoscopies, because I had one 6 year ago and it was the worst experience of my life. Sedation my a$$. I was extremely aware of what was going on and I gagged and choked and flopped and the doc was yelling at the nurse to pump more drugs in my IV. I remember every detail like it was yesterday. The rest of the day...
  22. Wandering Hermit
    No that is not what I mean. Your anti-gliadin IgA was 0. However there are IgA antibodies for many, many other things besides gliadin (which is the 'bad' part of gluten). Some people have low levels for ALL IgA antibodies. Inthat case you could be a celiac and always have low IgA antigliadin. There is a seperate blood test that assesses the overall...
  23. Wandering Hermit
    You are in the gray area. My scores were similar: antigliadin IgG was up, IgA was borderline, tTG was normal. It is important for you to determine if you are IgA deficient or not. Some people have very low IgA values, and this could influence the results. I think many experts would suggest a biposy.
  24. Wandering Hermit
    It would be nice if we each had Joe Pesci or Al Pacino as a cousin and we could call him up and have him "re-educate" our dear relatives in a most persuasive manner.
  25. Wandering Hermit
    My diagnosis was inconclusive: gliadin IgA = 21 (0-19 normal) - this was called a 'weak positive' gliadin IgG = 82 (0-19 normal) - moderate/high transglutamase = 4 (0-19)- normal No biopsy. Should have done it then. I was just so excited to have a diagnosis I just went with it. Before going gluten-free I had d about 1/10 days. After gluten...
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