moleface
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So, I had a highly positive Celiac blood test in 2013 while hospitalized with a collapsed lung caused by necrotizing bacterial pneumonia, which is a known severe complication of uncontrolled celiac. I also experienced extreme tooth enamel erosion, recurring iritis that's caused permanent eye scarring, anemia, swollen joints that doctors originally suspected...
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I had an intake appointment with a new PCP today, and she tried to order a celiac antibody test without me having eaten gluten first. When I countered with "I'm not trying to be argumentative or claiming that an internet search trumps your medical training, but all the literature says it isn't possible to test positive without eating gluten first. Most recommend...
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I saw that you'd replied awhile back, but I've just been avoiding thinking about this issue lately, for the sake of my own sanity. I'm sorry you've gone through that. I used to be close with someone in the medical field, and the impression I got from behind-the-scenes stories is that the medical system is rife with errors, just like any other profession...
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Thanks for the reply! I try not to be too harsh with doctors, but I can't help it when I'm so deeply frustrated. I went from peak health and daily running to suddenly feeling like death 247. I rapidly lost enamel on all my teeth, and got recurring iritis bad enough in my right eye that I lost around 1/3 of the vision in that eye. I'd understand doctors...
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Oh, I know that the ketogenic diet is a good treatment for some conditions, mostly due to eliminating carbs. Apparently it does wonders for diabetes. Still though, I can't help but scoff at my brother for buying into the biggest fad diet currently sweeping the nation. Don't get me wrong, when I call it a "fad", I'm not discounting it entirely - gluten...
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Yeah, I considered doing that, but I haven't gotten around to it. I feel like one call wouldn't make much of a difference, and I'd be complaining to an underpaid customer service representative who has no control over any of this. Plus even though I know my issue is legitimate, I know there's a good chance the rep would just be rolling their eyes...
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This is why I stick to inherently gluten-free foods - I've been burned too many times. Oats are obviously a huge source of cross contamination, so even if it tested at the 20ppm limit, it still could contain gluten-contaminated oats, albeit at the legal limit. I can't speak for everyone, but I seem to react to any amount of gluten. I've had issues multiple...
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Thanks for the advice! Honestly, I was always skeptical of the Crohn's diagnosis, and I originally figured that the gastro doctor had misdiagnosed Celiac. I started to entertain the possibility of both once my symptoms continued despite being gluten-free, but in retrospect I think I was getting gluten from cross-contamination. I stopped getting iritis...
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I actually hadn't read that before, but thanks for bringing it to my attention! It's a good summary of how varied the symptoms really are. I have all the gastro symptoms, but my main issues were always autoimmune - iritis, swollen hands, etc. Every case is unique, but I haven't found many accounts of symptoms that are like mine. I didn't even have...
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Thanks for the clarification, but they didn't do an upper G.I. endoscopy - they did a colonoscopy. This is just further evidence that this new doctor didn't even consider celiac to be a possibility. The previous gasteroenterologist did an endoscope without me having eaten gluten first, then did a biopsy during the colonoscopy after having me eat gluten...
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Yeah, that's the impression I'm getting. If doctors won't acknowledge celiac after all this evidence, I'm pretty sure I'll never be able to convince anyone. The irony is that these people are basically telling me I'm deranged for thinking that a doctor could be wrong, while simultaneously telling me that the previous doctor gave a horribly, massively...
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Well, after going to the new gastroenterologist, it looks like I was right all along - the first gastro doctor had misdiagnosed celiac as crohn's disease. I had a new colonoscopy done, which now shows no ulcers, anemia, or inflammation. The new gastroenterologist has the results of the previous colonoscopy and is aware that it found ulcers and heavy...
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It's disheartening that so many doctors could be so irrational. If I managed to find this many inept, dismissive doctors in my own limited experience, this sort of thing must be absolutely endemic to the medical system. It's frightening. Things are actually looking up for the first time in a long while. It was bad enough being violently sick and in constant...
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I just wanted to bookend this old thread with some updated info. To sum things up, sometimes it really isn't you. Sometimes you just happened to get a particularly bad doctor through sheer luck of the draw. Today I finally went to another gastro specialist. When I mentioned the previous gastro doctor's name, the new doctor got an odd look on her...
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Statistically, people with autoimmune diseases are likely to get dismissed by multiple doctors before receiving an accurate diagnosis. I think part of the issue is that the gluten-free lifestyle is viewed (somewhat accurately) as a "fad diet." I too dismissed the gluten free diet,, and I only stumbled on it randomly after I got a bout of iritis after...
