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moleface

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by moleface

  1. moleface
    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...
  2. moleface
    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...
  3. moleface
    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...
  4. moleface
    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...
  5. moleface
    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...
  6. moleface
    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...
  7. moleface
    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...
  8. moleface
    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...
  9. moleface
    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...
  10. moleface
    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...
  11. moleface
    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...
  12. moleface
    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...
  13. moleface
    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...
  14. moleface
    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...
  15. moleface
    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...
  16. moleface
    Yeah, this happened to me too. I got disagnosed with iritis and my blood test showed antibodies associated with autoimmune diseases, on top of a year straight of severe gastro issues and swollen hands. I only found out about celiac disease once I abruptly lost the enamel on several of my front teeth and googled the symptoms. Once I'd been gluten free...
  17. moleface
    I was hoping someone could help clarify this, because I'm very confused. Aren't enamel defects one of the telltale symptoms of celiac? Because a gastro doctor I saw had never heard of it, and recently the symptoms have been also baffling a dentist. Years before testing confirmed my celiac disease, I abruptly lost the enamel at the top of my front...
  18. moleface
    OTC pain medicines are essentially useless for significant pain in my experience. Ironically, opioids are actually much better for your body, aside from the physical dependence issues. I always found it ironic that American doctors are so scared to prescribe fairly benign drugs like codeine that are OTC in pretty much every other developed nation, yet...
  19. moleface
    That's odd. Like the above poster said, the issue could be that you took it in capsule form. I've been taking powdered psyllium husk on and off for years, and I never have issues when I mix it in a glass of water. Psyllium husk seems to work even better for me than fiber-heavy foods. I still have daily diarrhea, but psyllium reduces the number of...
  20. moleface
    I actually have this same symptom, but I haven't been able to find any definitive answers. I suspect multiple food sensitivity is a possibility, though I can't imagine what I could be reacting to. Either that or my gastro system has been so destroyed by a lifetime of heavy gluten exposure that I'm left with permanent symptoms even though I eat the same exact...
  21. moleface
    I doubt it. Just make sure you're continuing to eat gluten in the meantime. I shouldn't have said anything - I'm horrifically sick and no doctor will believe me, and even a gastroenterologist had never heard of the tooth enamel defects and instead implied that I don't brush my teeth, so I tend to end up relating everything to my own bad experiences....
  22. moleface
    Thank you for the advice! I'm so sorry that you had to deal with that. It makes me feel less alone to read peoples' medical horror stories online, but I hate to think of the potentially millions of people who are suffering because of the shortsighted egomania of doctors. You're right that I need to play dumb - I realized years ago that doctors take...
  23. moleface
    OP - I don't mean to complicate matters, but from my experience, an endoscopy won't necessarily detect celiac disease in all cases. I tested positive via a blood test back in 2013 when I still had high levels of antibodies in my system, and I wasn't surprised because my symptoms were so specific - especially my abruptly dying tooth enamel. But when I...
  24. moleface
    Some people get rebound symptoms when they go gluten-free, though it's a minority of patients. Maybe that's the issue? When I first went gluten-free years ago, I dropped even more weight and my inflammation worsened for several weeks. I know I wasn't imagining it, because at the time I had no idea that a certain percentage of people get "withdrawal"...
  25. moleface
    I always bring copies of my medical records with me to doctor visits. I've posted about this elsewhere on this forum, so I'll try not to be long-winded, but medical records don't seem to convince doctors. I got referred to the gastroenterologist by a physician who thought I was a hypochondriac. He gave a blood test, which I pointed out can't detect celiac...
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