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squirmingitch

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About squirmingitch

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  • Gender
    Female
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    Gardening, birds, bees, butterflies and nature in general. Nature is a genius!
    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. Gluten withdrawal. It's real. I agree with what cstark said but I call it gluten withdrawal. Your body really does get "addicted" to gluten and when you go gluten-free, then the body has to cope with the withdrawal of a substance it was used to getting on a regular basis even though that substance was killing you. It isn't much different than drug addiction & the withdrawal process from that. It sucks, I know but I promise it will get better. Rest as much as you can, drink tons of water, eat well cooked foods to ease the strain on your villi. Bone broth - home made - is a great healer of the gut & very gentle on it as well as being extremely nourishing. Just google how to make it. {{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}
  2. I would suggest you test your daughter through a doctor. The Enterolab tests are not recognized as accurate or reliable by the medical profession. See this link from the Chicago Celiac Disease Center: http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
  3. OK, was your daughter tested by a doctor or did you do one of these order online stool tests? And the same question goes for your tests. Can you give a link to the company?
  4. NO. Approx. 1/3 of the population carries the genes for celiac but that does NOT mean they will ever present with celiac. Only a small percentage of them will. A gene test is really used more to rule out celiac rather than to diagnose it. What I meant was that since your daughter is diagnosed and IF you carry one or both of the celiac genes then there is a greater chance you are celiac or "early stages" especially in light of your symptoms. All 3 of those factors weighed together was what I was referring to.
  5. You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
  6. Make sure she keeps eating gluten (only a saltine or two or a single slice of bread per day) until the endoscopy is finished.
  7. Yes, you are negative which means you don't have celiac disease. You could however be non celiac gluten intolerant which there is no test for at this time. What are your symptoms that led to you being tested?
  8. I think it's absolutely worth exploring the possibility of celiac disease. Your PCP can order the tests -- any doctor can. This is the full, current serum panel and you must be eating a gluten diet, not a gluten light diet or a gluten free diet or you will get false negatives. Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA Total Serum IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Get copies of your results when they come in. If any are positive, then you would move on to an endoscopy and you need to just keep eating gluten until that is done or again, you will get a false negative. My husband was on Ritalin for years due to his fatigue (before dx). He used to complain to the docs that he felt like all the blood had been sucked out of his body. He hasn't been on the Ritalin for years now & he no longer feels the overwhelming fatigue.
  9. egs1707. Are you in Canada? It's NOT a good idea to go gluten free between now & the GI appt. and here's why.... MOST of us have MUCH stronger reactions to gluten when we go back on it for the endoscopy. A lot of people have had such strong reactions that they have been entirely unable to complete the challenge and have to call it quits. This means they never get an official dx. It's your call, you make the choice. However, I will say that you don't have to eat a lot of gluten, a couple saltines or a slice of bread per day.
  10. 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 & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
  11. You're welcome! Yes, I too, hate waiting for lab results. Ugh!
  12. http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
  13. 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 are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
  14. 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.