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jacflash

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About jacflash

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  1. I am new to the world of Celiacdom and the whole online culture of the community. Please forgive me if this is a silly or offensive question; it is meant sincerely. In light of the very high accuracy of the tTG test, and in light of studies showing that a tTG over 30 is 100% indicative of celiac disease except under clearly-understood circumstances, why do people still insist on a biopsy? In 3-4 days of scanning online forums I've repeatedly seen biopsies referred to as "The Gold Standard" (caps and all) and even a couple of folks who refer to themselves as "Gold Star Celiac", like it's a status symbol. Now, if I were the executive director of The National Association for the Financial Enrichment of Gastroenterologists, I'd love this sort of mindset-establishing branding. But as someone who has probably had undiagnosed celiac disease for decades, who got a 59 on the tTG, who is probably facing a 'scope in a few weeks, and who is -- and this is the real reason I ask -- REALLY reluctant to inflict scopes on his 9-yr-old and 6-yr-old sons who probably also have it, what's the point? What useful, relevant info does the biopsy consistently deliver that a high-positive tTG plus several months on the diet wouldn't? Why should I do this to my kids?
  2. I probably went almost 40 years undiagnosed. I am 41 and we think I got it when I was 3. It has had an enormous, incalculable impact on my life. I have managed to cobble together a family and a reasonable-looking career but I've spent days on end in an exhausted depressed dyspeptic fog telling *myself* I was being lazy. I have never actually been divorced or unemployed but I've had relationships fail and haven't done as well in my professional life as my skills would seem to suggest. By way of example: I got into one of the top universities in America based on intellect and academic potential... and then stressed myself into an Addisonian crisis halfway through and graduated by the barest skin of my teeth, with a couple of eminent professors shaking their heads at me and mumbling about "such wasted potential". It would be easy to carry a lot of anger and resentment around this as I work through the diagnostic and gut-healing process, but I'm not going to go there. I am looking forward to spending the rest of my life making up for lost time and determined to be grateful to have discovered it while my sons are still young -- not only so that I can enjoy my time with them, but so that if they have it (I have 3 sons, we suspect it in 2, testing is forthcoming) I can spare them from the worst of what I went through.
  3. My sense, and this is possibly unkind and unfair, is that "candida" sells an awful lot of supplements and books, and provides a lot of possibly-false hope to people who have clusters of symptoms that regular docs can't seem to deal with. I am highly highly skeptical of the whole thing. I am especially highly skeptical of it because if it panned out scientifically (and were really as pervasive as its proponents say it is) it seems like it'd be a golden area for someone like Pfizer or Merck to tool up a superdrug to attack it, and yet no serious research is known to be underway on that front.
  4. I've had Addison's since 1987 and am currently awaiting test results to see if I have Celiac. I am wondering if you mean that you believe that everyone with Addison's ALSO has Celiac or that they are misdiagnosed and do not actually have Addison's? The former is an interesting question. I suspect the answer is that lots of people with an "autoimmune" diagnosis for primary Addison's -- and who don't have it as part of a larger polyendocrine disaster -- probably have the flavor of Celiac that clobbers pantothenic acid levels. Current research says that about 1 in 10 of us have Celiac, but most Addisonians who follow the research (which is most of us, because our endocrinologists don't know squat about us) think it's probably more like 30-40%. I DON'T think it's 100%. The latter question seems... well, you know how various medical authorities tell you that Celiac can cause "permanent organ damage"? Primary adrenal insufficiency aka Addison's IS what happens when the organs in question are your adrenals. Tossing the white bread ain't gonna restart my adrenal glands, y'know?