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PatrickCA

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Everything posted by PatrickCA

  1. PatrickCA
    Resident, First, let me thank you for triggering much thought and discussion. This is a very interesting thread. Thanks everyone! It is clear that you appreciate the scientific perspective and are looking for evidence. Yes, the verdict is not yet in on Fecal testing. But, it seems that you fail to appreciate the rate at which this field is evolving...
  2. PatrickCA
    The biopsy is the best evidence of Celiac. The Drs. may not know that the blood tests are not very sensitive. They *are* specific. If they (aTTG or aEMA) come back positive you most likely have celiac. But if they are negative, it just doesn't say much. This is because most studies on test sensitivity (how often the test is able to identify a person that...
  3. PatrickCA
    Glad to hear I'm not the only skeptic. Yep....probably still the most reliable and most useful too.
  4. PatrickCA
    Dawn, I was very happy with the Enterolab service and their willingness to answer (or try to) a couple questions after testing. I'd recommend the panel with gene testing if it is affordable for you. If there is a gluten sensitivity, I think EL's test is most likely show that. It is very sensitive. But, until Dr. Fine publishes more of his studies ...
  5. PatrickCA
    Thank you both very much for your many thoughful comments. Of course, the truth is that I believe that if I have positive blood tests, I'll be able to commit. As you point out, if I get a negative result, it will not help me to committ which could be a problem. I recently read Dr. Peter Green's book on Celiac disease (as well as Dangerous Grains...
  6. PatrickCA
    I have the same thing. Pain from outside knee (just below knee cap) to ankle, mostly on my right side. I don't know what causes it. But it sure is a pain... Somes it get bad to the point where I can't drive. Like plantime says, it may be the back or spine, or perhaps nerve damage. Maybe others will know more... Hope they do and post.
  7. PatrickCA
    Thanks for your quick responses CarlaB & RWG. And my rational side agrees with both of you. I certainly know there are many here whom have had to make a decision for their health without the benefit of any so called "gold-standard test". I respect that, since I know that these tests can be less than meaningful. OK.... You are going to think I...
  8. PatrickCA
    Hi All, I was recently tested by enterolab, and had positive aTTG, aGA, and 1 celiac, 1 gluten sensitivity gene. Maybe we are on to something..... But, I need more evidence to do this for life. So will my dr. The problem is that I've been gluten free for about 7-8 weeks, with one mistake resulting in a few grams of gluten. I just been given...
  9. PatrickCA
    Thanks LauraJ. It was encouraging to hear that you didn't heal all at once. - as strange as that sounds. The shampoo thing seems (at first) bizarre. I heard the same thing has helped others here, so there must be something to it. Did you ever get a mainstream doc to either get positive blood work for you, or to believe your enterolab results? Or did...
  10. PatrickCA
    daffadilly - that is amazing! Sounds like you have been a mover n' shaker getting the message out! That's great.
  11. PatrickCA
    I completely agree that this is the heart of the problem. And Laura, I agree with all that you said - well said. As I recall, this figure of 30% pertains to randomly selected individuals having immunologic reaction to gluten (i.e. anti-gliadin IgG and/or IgA). Thus, this would imply to the average Dr. that the specificity (in the vernacular) of the...
  12. PatrickCA
    Great question! Good find 2kids4me. Interesting that the artical says, "...mass screening deserves careful consideration." I don't think it is currently profitable for any company to do mass screening, which makes celiac dx a good target for govt/socialized medicine. Of course all of *us* know that it would have been (much) cheaper for pay for the...
  13. PatrickCA
    Cara, Thanks for your efforts to keep this this collection of information available online. I have been tested for B12 twice during the past two years by two different labs. Both times gave results within normal limits. I've started going through some of the articles on the gluten file site,...very interesting stuff. I thought about copying...
  14. PatrickCA
    Shalia, My understanding is the sudden weight loss or weight gain does not always occur. I didn't have this problem either, but did have many of the others. Like you, I was concerned about Enterolab not being seen as mainstream medicine. However, I was in process of changing my primary care physician, and couldn't get to a dr. for over two months....
  15. PatrickCA
    Thanks for finding that link, Nancy! It looks really informative, and very relevant to the symptoms I've been experiencing. I immediately noticed things that I've experienced, like painful zaps on my feet, muscle spasms, tingling, and other fun mysteries. Rachael, sorry to hear you having this vibration problem as well. Sounds very familiar. Do you...
  16. PatrickCA
    That is interesting, Nancy. Yes, I had both the DQ1 and one of the main celiac genes: DQ8. Did you notice a clear difference in cognitive function (or other things) with the CF switch? (Or mainly just from the gluten-free?) Glad to hear your IQ improved! We need smart advocates. I'm hoping for 20 extra points myself! I definately have been having...
  17. PatrickCA
    Thanks everyone for your great advice and support. I really appreciate your sharing your dx's, your suggestions for 'getting over it', and even your suggestions for chocolate brands...which will not be ignored. I know I'm being difficult, but it just seems strange that after so many tests (the MRIs, three spinal taps (which were abnormal), full MS work...
  18. PatrickCA
    Hi all, Ah...poop! java script:emoticon('', 'smid_7') OK...this message is long and not for the faint of heart. I got my test results back yesterday and am in a state of disbelief!! Basically, all of the results (excluding absorpsion) were positive - suggesting gluten sensitivity and or celiac, as well as casein sensitivity. Fecal Antigliadin...
  19. PatrickCA
    I have had similar experiences. Just occasional painfully swollen glands (1-2 days) under the chin without any associated cold. For me, the glands flairs seemed to coincide with increasing severity of other problems, joints, muscles, bones, and neurlogical.
  20. PatrickCA
    That's interesting that you also had the fever. I don't know how common this is. And I cannot rule out the possiblity that I had some sort of flu, exactly 24 hrs after. But it didn't seem like a flu I've had before. I'm still sort of in disbelief that this might be my problem, since I've been searching for years. I've had two fairly thorough neurological...
  21. PatrickCA
    Penguin, Ooops. Sorry, about the double quote. You are very quotable. It seems pretty barbaric in this day an age to have to challenge for 3 monthes! So sorry to hear that. But hope that last month flys by and your biopsy gives you all the info you need to lay the issue to rest. I hope I don't have to do the same thing. I suppose you when...
  22. PatrickCA
  23. PatrickCA
    LOL about the video store, CarlaB. Thanks for that! My balance has been bad for a while but lately I find myself using walls more. I had a similar experience at a restuarant. Hard to explain to your guests why you fell down at a restuarant, due to balance issues and/or weakness, when you don't have a diagnosis. Embarassing Also thanks for the comment...
  24. PatrickCA
    Hi everyone, I'd really like to hear how you felt after going gluten free, and then reintroducing gluten into your diet. I just tried to go gluten free for about 2.5-3 weeks (I know this was probably not long enough but it was hard for novice), and felt a mild improvement several symtoms -stomach and gastro. But when I went back to my usual cereal,...
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