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masterjen

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Everything posted by masterjen

  1. masterjen
    Hi - you may want to look up something called myoclonus to see if this fits your symptoms. I had this, but it is now controlled with medication. I still have minor hand tremors but not the spasm/jerking you're referring to. I was diagnosed with celiac 5 1/2 years ago and the myoclonus did not improve despite being 100% gluten-free. The spasms and jerking...
  2. masterjen
    Very true, that training in gluten free practice and actually carrying it out are two different things. I have always believed this as well. I have had celiac now for 5 years, and have yet to eat out in a restaurant that is not dedicated gluten free (and even at that only twice since it is not in my home town). Good to know that Udi's Pizza kit is what...
  3. masterjen
    I just saw the article saying that Pizza Hut is now making a pizza that is certified as gluten free by the gluten intolerance group. This is confusing: is it or is it not safe for those with celiac disease?
  4. masterjen
    Other intestinal conditions can have symptoms similar to celiac disease, and also improve somewhat on a gluten-free diet. Two such conditions I know of are colitis and eosinophilic esophagitis (my spelling is probably a bit off). If the biopsy is negative, make sure you Dr. pursues alternative diagnosis so you can get the proper help.
  5. masterjen
    I developed lactose intolerance after going gluten-free as well. I too, would like to know of any medical explanation for this, esp. when my last endoscopy showed the vili to be back to normal. I've heard other people say they have developed other food intolerances after going gluten-free, too.
  6. masterjen
    What I was told by my gastroenterologist about eating before the test was to eat even more gluten than usual. The reason given is that some endoscopy results can come back equivocal and if someone truly has celiac, even just a few days of pouring on the gluten can cause even more reaction from the damaged intestine to take place. An addition to what...
  7. masterjen
    This is a REALLY old topic now, but for anyone who lands here searching for PB info. thought I'd add that MaraNatha peanut butter is also gluten-free and absolutely delicious!
  8. masterjen
    I was thinking about the recent follow-up I had with the neuro., and he suggested that the seizures I have are not classic epileptic in nature, and that what might explain the symptoms is some form of dystonia. I put this out of my mind until recently, and when I googled this I learned that there is a form of this that is debatably a form of epilepsy (debatable...
  9. masterjen
    Thanks, gabby - I really appreciate you taking the time to tell me this!
  10. masterjen
    A med. I was initially taking for about 2 weeks was clobazam, which worked minimally to control the seizures. Once in the hospital I was initially given IV dilantin which was then switched to oral, but after 5 days on this I was so out of it: visual disturbance called nystagmus when I looked in a particular direction, very uncoordinated walking (in fact...
  11. masterjen
    Hi, mushroom; Glad to hear you survived your hospital experience. When I was cooped up in the hospital for 2 weeks recently, I ended up having to have my mom bring in all my meals. The hospital cooking staff tried, I'm sure, but in my case it appeared they had little to no knowledge of the effects of cross-contamination. The food itself was gluten-free...
  12. masterjen
    Sorry for being out of touch for awhile. The neuro. put me in the hospital for 2 weeks: what a nightmare - boring as heck, and got gluttened twice on the hospital's so-called gluten free menu (cc, I'm sure), and after the first few days had my mom bring my meals in for me. I was in two different locations in the hospital: in the first, the nurses were...
  13. masterjen
    I'm "willing" the phone to ring with the results (should come in today or tomorrow). The anxiety and nervousness waiting for the celiac test results was nothing compared to this I know "patience is a virtue" (or whatever that saying is), but whoever came up with that was not waiting for test results at the time . . . .
  14. masterjen
  15. masterjen
    Didn't get electrocuted during the EEG (lol). Interesting experience; some minor version of shaking/seizures were triggered, so I hope this means there will be some answers (had to breathe following a certain pattern for part of the test, look at strobe lights in various patterns through closed eyelids, and open and close my eyes in a certain pattern for...
  16. masterjen
    I think the ingredient that might be listed to suggest possible casein in toothpaste is phosphoric acid (something I read a while ago). Try googling this acid, and see if this helps in your investigation.
  17. masterjen
    Thanks for caring I've still been getting these "seizures", mostly at night. The neurologist I went to on the 27th of May was INCREDIBLE!! Very caring, attentive, interested, professional, and knowledgeable. He sent me for a screening CT later that same day (he must have "pull" at the hospital, as normally in my part of the world one would wait at least...
  18. masterjen
    Just an update: My GP was able to move the neuro. appointment to Thurs. May 27 from June 4! Symptoms are continuing, so fortunately I will (hopefully) get some answers sooner rather than later. Also, I wanted to thank everyone for their input and support!!
  19. masterjen
    Thanks for the warning! I'll be "ticked off" if they attribute what's going on to anxiety - that's like physicians saying it's all in my head and therefore they are not going to try to find a physical cause. How can it be anxiety-related when it happens at the most relaxed time of the day (in bed and either reading or beginning to "zone out" to sleep),...
  20. masterjen
    Hi, and thanks for the responses - this is a GREAT community we have here. People who don't even know each other expressing empathy, sympathy and concern through a related affliction . . . it's incredible. As silly as it may sound, even at the time the first episodes occurred, part of me knew I should get into emergency, but I was frightened by what...
  21. masterjen
    Two nights ago I had just gotten into bed, and the outside of my right foot felt numb - I don't think it really was numb because when I touched the area I could myself touching it, but it felt numb just sitting there. Then I noticed my toes on that side involuntarily flexing, then my foot. At first it was funny, then things got serious. The toes followed...
  22. masterjen
    Hi - I know the feeling you're referring to all too well. I think the sensation, at least for me, has been a combination of things: 1. not giving my body the foods it is used to having, and therefore it is saying "hey, where's the other type of food you used to put in here" (ie. a withdrawal-type of symptom) and 2. not eating enough protein. Through a...
  23. masterjen
    I have no suggestions, unfortunately, as I am still battling food issues, too. I have a question for you, though: how was it determined that you were allergic and/or sensitive to all these foods? What sort of tests were done? I'm wanting to find out what else might be bothering me, but my Dr. just says that additional food sensitivities (in addition to...
  24. masterjen
    I won't buy the precut either. For the same reason, I won't eat out - I know many restaurants use pre-cut items, or even canned fruits and veggies from who-knows-where. I have yet to see a can of fruit say "prepared in a gluten-free facility", and I'd be particularly leery of where they got those canned goods from - restaurants like deals, and I'm sure...
  25. masterjen
    No haven't started yet. Money was getting a little tight there for awhile (I'm still not back to work full-time), but I still plan to. It is the best formulation I've researched so far.
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