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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard &...
  2. squirmingitch
    You're welcome! Yes, I too, hate waiting for lab results. Ugh!
  3. squirmingitch
    Open Original Shared Link Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: Open Original Shared Link
  4. squirmingitch
    Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc...
  5. squirmingitch
    dp ronan, I just want to stipulate that this kind of comment can mess people up with their testing. It sounds like you're saying the op should go gluten free if the blood tests come back elevated. That is not true because an endoscopy should follow and gluten has to continue to be consumed right up until the endoscopy or it will skew that.
  6. squirmingitch
    Good luck!
  7. squirmingitch
    pablito, here is the full serum (blood) panel. Make sure your doc runs ALL of the tests on it, not just 1 or 2. Insist!!!!! YOU are in charge. Remember that. Some people test negative on the most common 1 or 2 tests they run so it's always better to have the full panel run. Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti...
  8. squirmingitch
    Below is copied & pasted from this thread: My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE. I would recommend him to the whole, entire world. I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in...
  9. squirmingitch
    Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then...
  10. squirmingitch
    Hey there! Welcome to the club you never wanted to be a part of. Boy, you are certainly throwing yourself one heck of a bang up pity party aren't you? PLEASE do not take that as a put down! I don't think there is a single solitary one of us who hasn't thrown ourselves at least 1 pity party. I know I've thrown at least 3. Oh, & crying meltdowns in the...
  11. squirmingitch
    I know that Lea & Perrins Worcestershire Sauce in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free. I wouldn't use it. No sense taking any chance at all...
  12. squirmingitch
    I doubt you will find a GI doc or any other doc who will put any credence in the Enterolab results. See: Open Original Shared Link
  13. squirmingitch
    There is no such thing as a "gluten sensitive" gene. DQ2 is one of the celiac genes. As others stated, the gene test is more to rule out celiac but does NOT mean the person has celiac or will later present with celiac. About 1/3 of the population has the celiac gene(s) but they will not all develop celiac. Having said that, it's not the norm but there...
  14. squirmingitch
    Well if you carry the gene & your hubs carries the gene then I would assume the odds are greater that the kids will present with celiac. I think we have skewed numbers for family members having celiac and they are skewed on the negative side. If family members are not routinely tested then there can be no (or not enough) statistics to reflect the true...
  15. squirmingitch
    We can't tell without the reference ranges on those bloods. Different labs have different ranges so it's important to have those ranges. Celiac can present at any time in life so if you had tests 4 years ago that does not mean you're not celiac forever. It might be smart to get tested again BUT make sure you're eating gluten (at least a slice of bread...
  16. squirmingitch
    You're welcome. That's a great site BTW although I find it a bit crazy to navigate at times.
  17. squirmingitch
    Oh you're so welcome! 2 saltines per day should be enough. See: Open Original Shared Link Many people find it easier (if there really is an "easy") to eat the gluten before bed. The idea there is that the "worst" of the symptoms happen while you're sleeping so when you get up in the morning it's not as bad throughout the day.
  18. squirmingitch
    Good question RMJ. oxlfm2016, You should be tested for celiac disease. Make sure you continue to eat gluten until ALL testing is finished! This is imperative! In the meantime, try eating only well cooked veggies, and meats. Even fruits should be well cooked. Easier to digest and much kinder on your tummy. Also take probiotics. Generally lactose...
  19. squirmingitch
    This is a talk Dr. Joseph Murray gave to the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan in Nov. 1996. Dr. Murray is a gastroenterologist and celiac disease expert and researcher at Mayo Clinic. I have been looking for this text for years. I had it once but my computer died and I lost many records including...
  20. squirmingitch
    Great ideas! Picnics, movies, art museums, concerts, kayaking, hiking, poetry readings, botanical gardens. Carnivals & fairs - you can buy the date things to eat & bring your own snacks.
  21. squirmingitch
    Oh boy! Really on the ball aren't they?
  22. squirmingitch
    Look for some preservative that is common to all of those items.
  23. squirmingitch
    It looks like she did have all the celiac tests and some more tests besides. I am not familiar with those other tests, what they mean or what they would be looking for. I'm sorry, I don't know what the Immunofixation is - have never heard of it before. I wish I had an answer for you. Maybe someone will come along who knows something about that. I will...
  24. squirmingitch
    Before I forget..... The thing with her not having an official celiac dx is that she really needs that for school & later for college so she can be protected and taken seriously by law. OK, what you wrote now & the timeline makes more sense. nO, there are no hard & fast rules for gluten reactions AND they can & have been known to...
  25. squirmingitch
    You're welcome. I have never used the protein shakes. I know what you mean about zombie hermit. I don't think I slept for a full 2 years except in increments of 10-20 min. from absolute exhaustion. Hang in there.
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