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Susan M-G

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  1. I don't have hiccups a lot now, but when I was twelve I had them daily. I used to say that I had them for an entire year. I can't imagine that is completely true, but it did seem like they were incessant. After that they were frequent, and just grew less frequent over the decades. I never did learn a trick to make them go away. I also have teeth with insufficient enamel. It was thrilling to read this is a symptom, as I get no end of speculation from dentists when I see a new one. Celiac was never among the speculations, however.
  2. Dr. Karen Nepveu, Rheumatologist Colchester, Vermont
  3. Is there greater sensitivity to gluten after starting gluten-free diet? i.e. pre gluten-free diet, the gluten containing products individually do not cause upset, just a general feeling, and/or eruptions of symptoms that are not continuous, although the diet contains a constant or regular input of gluten, compared with post gluten-free diet, in which a slip, an oops, or a deliberate ingestion of birthday cake results in almost immediate distress?
  4. Thanks for all the replies! I'm really looking forward to trying them out... Susan
  5. As a newcomer to this issue and this forum, I have recently read the Newbie tips, and what stands out in this situation with a patient in a probably rural area is the possibility that she has not received enough information regarding the incredible array of products we ingest that contain gluten. If this is the case, her failure to improve while on the diet may be due to otc drugs, i.e. for her migraines, and/or prepared foods with gluten hidden in the indecypherable ingredients, or licking the envelopes to pay her bills, or the toaster which is used for the entire family's toast, or the griddle she uses to make the family's grilled cheese sandwiches, etc. It is like a minefield for the uninitiated. Even though the dietician who wrote this is well versed, perhaps the doctor is only half versed, and has not advised the patient on the full extent of the problem. It may be that if the patient's family members could be (and maybe they already are) included in the patient's care, by educating them to her situation and what she needs to look for and avoid, as well as giving them suggestions of gluten free recipes and substitutes to make the transition a team effort, and one that can be accomplished even in a small town setting that may not offer the resources available to people in a metropolitan area.
  6. I wanted to add a response to "Pinned/Pinner?z" but did not reply right. So I'm just going to ask questions here.. I too have been wondering about things like this term glutening? For quite some time I was sure I was sensitive to wheat, but that I was not celiac because of the negative test I had originally. So I, for at least two years religiously avoided wheat, not realizing that spelt, and other "wheat free" things that were glutinous were also bad. If I cheated on this diet I would feel poisoned, and have diarrhea. I don't recall becoming nauseous. My stomach would tighten up into knots, and then bloat, and it was terribly uncomfortable, to say the least. I had been having this kind of thing since I was a kid, however, and I think I just got used to having stomach aches. My mom always said it was "nerves." Earlier this year, I just got tired of dealing with the diet. And it did not really hit me as hard as it had in the past. In fact, it was only when I was at the doctor for another reason that I was describing feeling crummy (but not poisoned) and having stomach cramps etc., and it dawned on me (duh!) that it was the old wheat thing. the doctor, new doc in a new town was very astute and aware of celiac symptoms, etc. she mentioned this to me and I told her I was not celiac as I had been tested for it a couple of years earlier. Of course I had no idea what tests were done, and despite my repeated requests the previous medical clinic never sent out my records to the new doc. New blood tests have been "borderline" and in anticipation of the biopsy, I've been indulging on bagels - toasted with butter - and other non-gluten free goodies to my heart's content, with jsut mild gastric upset, and nothing like it was before. That really confuses me. So I wonder if the severity of the response is iwth the degree to which one adheres to the gluten-free diet... ie, a lapse after stricter adherence has more severe consequences and a lapse after loose adherence has less severe consequences. Since I never thought I needed to be gluten free, I have never adhered to the Gluten-free diet, other than restricting wheat products, and those are everywhere. now this was long winded but I am so uncertain about what is going on that I hoped some of you have had similar experiences and can comment. Thanks, Susan
  7. I just read the list for newbies.. It is overwhelming. I also don't think my symptoms have been as bad as some of those I've been reading about. Maybe I'm not celiac at all, but before trying to stay gluten free, I felt like I was being poisoned, had brain fog, bone, joint, hair (at the root) and skin pain/tenderness, and felt exceedingly tired. I also had constant gi problems which I'd rather not describe. That was a long time ago, and when a gastroenterologist could find no causes, I was referred to other drs. Eventually a rheumatologist suggested I had something related to lupus, though not lupus itself. In the meantime I did an elimination diet and found that I did great when I eliminated wheat from my diet. The rheumatologist then tested me for celiac, which he said was negative. Now two or so years later I learned that the testing has to be done when you still have gluten in the diet... But after being diagnosed with "sort of lupus" I've been on plaquenil and most of my symptoms are much better, except the gi stuff. A new rheumatologist, (after moving to a new area) didn't think I have sort-of-lupus, and suggested the whole problem could be celiac. So the testing has resumed, and I'm scheduled for an endoscopy after "borderline results" on blood tests. hmm Any insights? Thanks! Susan
  8. A couple of years ago, when I was living in Seattle, WA, I found and really enjoyed a frozen pizza with cornmeal crust (wheat and gluten free). When I first bought it, I delayed trying it because I just expected it to taste awful, but when I finally baked it, it was better (to me) than standard pizza crust. I bought it a couple more times, then could never find that brand again. I think it started with a "V". I erroneously bought an "Amy's" cornmeal crust pizza, without further scrutinizing the package, thinking I was getting the same all cornmeal crust, and paid for my mistake. I have never seen another all cornmeal crust pizza since then.
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