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SandraLAVixen

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

Everything posted by SandraLAVixen

  1. SandraLAVixen
    I know this sounds bizare, and it's very frustrating, maybe it's not a total "cure" but I found something at least. I just know that if I force myself to sleep after eating wheat, there is considerably less pain. If I do not sleep much and eat wheat, then I have severe pain, thrashing, ER, etc, etc... (I don't feel particularly sleepy after eating danishes...
  2. SandraLAVixen
    Hi it's me again, yes I know, I've been up to challenging wheat again... I know, I'm stubborn... but I finally figured something out. For the last month I ate danishes (made from wheat) every morning for a month and then went straight back to bed to nap, and an hour later there was no pain!! I did that because I thought that my body was low on serotonin...
  3. SandraLAVixen
    Does anyone know of any reputable articles or information that links low serotonin levels to pain or seizures when consuming wheat/gluten? After nearly a year of testing I finally found one test that came back abnormal for low serotonin, it was not abnormal, just very low. I found that if I slept a lot before and after any meal with gluten, the pain...
  4. SandraLAVixen
    My test results finally came in!! If you don't know me, what happened was that 2 weeks ago I had a 24 hr urine to test for Carcinoid (after having tons of other tests that came back negative for nearly a year). The result was around 2, normal 5-15, however this is low, as opposed to high. So it rules out Carcinoid but it does indicate I have low...
  5. SandraLAVixen
    I understand, I'm avoiding it now, I only ate it again for the two tests I had to do (the Carcinoid and redoing the Celiac profile) What I don't know what to do now is how to handle things like, restaurants/eating out, and things like that. My mom asked me what do I do if I have to go to some social gathering and there is food there, and what if the world...
  6. SandraLAVixen
    Thanks for the link, I have a question about the article, it says: "The main histology characteristic of [wheat sensitive] patients was eosinophil infiltration of the duodenal and colon mucosa" My GI said he didn't find any in the endoscopy biopsy he took back in Feb, also my CBC is quite normal (overall WBC was rather low). Is there a specific test...
  7. SandraLAVixen
    I feel fairly confident about being on gluten for more than 2 weeks, but really, it was the most I could tolerate (pain wise). I'm still waiting for the test results, I hope they find something because I really can't tolerate any more. Since the tests I'm avoiding all breads for a while. It feels so good to be pain free for a while, I can finally sleep...
  8. SandraLAVixen
    Since my recently rounds of tests are over, I am avoiding gluten. Thanks everyone for helping me through this. But I am still not 100% convinced byself what the problem is. I only tell my mom and my drs that if I eat certain breads/pastas, this happens. And they all say, well your tests are always negative so it means you have no problem. I also...
  9. SandraLAVixen
    OMG, so I made it, I feel so alive but exhausted. I was on gluten (eating breads, wheat, etc) to make sure I "symptomatic" for a revised Celiac profile and a Carcinoid 24hr urine test. I haven't slept much for the past few days since the pain kept me up for so many nights and my stomach feels like the remains of a battle ground after a war. I feel like...
  10. SandraLAVixen
    Thanks, though I'm not sure how to explain something like this to anyone... every time I think I have explained that my pain is real to my mom, the next day she says it's all psychological and I have to re-explain it again. It's so frustrating. The porridge I eat is made from cottage cheese and boiled turkey meat. I tried semolina porridge once and...
  11. SandraLAVixen
    I do listen and I really do think about what everyone says here, I really appreciate everyone taking their time to help me too. I just want to be absolutely sure I am doing the right thing, because I feel like there really is no professional help on this issue (NCGI). My mom and my doctors just don't understand, they think I am making this up,...
  12. SandraLAVixen
    It's just about my belly button, in a "C" shape (as if it were written normally when you are looking at me). It's about 5cm by 4cm in size, and it radiates to the back, where the kidneys are. Yes I had an US of the gallbladder, I saw it, it was totally clean. There was a 4mm kidney stone on the US, but later I had a CT of the kidney and it appearently...
  13. SandraLAVixen
    Now, mostly cottage cheese porridge, boiled turkey meat, things like that. Only porridge that was bad was one made from semolina (that really hurt for obvious reasons). I need to find out why breads are hurting, not just avoid them, so far I've narrowed things down to what appears to be gluten (with some contradictions). I don't want this to be something...
  14. SandraLAVixen
    Well for example, if I eat pastas or pizzas, I first feel a strange "echoy radiance" around my whole body, particularly around my head about an hour after eating. Then a few minutes later I get a sharp pain in my upper abdomen (always the same place), but only for a few seconds. Then its followed by 3-8 hours of horrendous pain until I pass out. During...
  15. SandraLAVixen
    Right, but I have to find out cereals (mini-wheats and raisin bran) do not cause pain, I ate them this morning and still feel nothing. Also, some danishes hurt, while others do not, I have to figure that out too. If I did not push so hard to trying to figure something out, I may never have tried the elimination diet back in Jan and never have found...
  16. SandraLAVixen
    I was gluten free roughly from Feb to Apr 2012, I had tests and bloodwork done about that time (not over one weekend but over several weeks). The endoscopy and pillcam were done while gluten free. I guess the reason I'm doing this (keep re-challenging bread) is that all the tests are negative and I have no reason to suddenly have this kind of reaction...
  17. SandraLAVixen
    I won't do anything rash right now, but I do need to be 100% certain that gluten is the cause. My mom feels that this is all psychological, and since last month (August) I've been going to several therapists, so far nothing has helped (other than bringing up a lot of bad childhood memories). One GI recommended Elavil, it's an old SSRI I think, and...
  18. SandraLAVixen
    I have asked him about that, he didn't elaborate much other than to say that I do not have an allergy to wheat or gluten (or anything), but to stay away from wheat or gluten as he thinks it would "kill" me. But when I ask him what is the cause and what do I do, he said there was nothing more he could do as an allergist. I have been to about 20 doctors...
  19. SandraLAVixen
    I just boiled semolina with water, to make porridge, so it was plain. I'm sure semolina was the most painful. I also tried pastas like mac & cheese (but without the cheese) and it really hurt too. I was gluten free for about 3 months, which happened at the same time I had the endoscopy and pillcam, which I'm worried that it probably also yielded...
  20. SandraLAVixen
    I posted earlier about a gluten and wheat skin test (administered by allergist) that I had being NON-REACTIVE (negative) and recent elimination diet that seems to point to gluten being the cause (more pain from eating foods with more gluten). Can anyone explain the difference between the gluten and wheat skin test, which uses gluten and wheat viscous being...
  21. SandraLAVixen
    I always get a reaction 1-2 hours later, it's very clear and immediate so no guessing on that. The lab samples were tested by my allergist, on my skin, and he said it would be the same as if I ate it (but I doubt it)? I was gluten-free earlier in the Spring but it did not help. All of these items were tested from Christmas 2011 to now, though I had...
  22. SandraLAVixen
    Wait, so protien = gluten? My reactions are within 1-2 hours, so no delay or guessing involved. I know I get a higher reaction with pasta/semolina, things made from durum wheat.
  23. SandraLAVixen
    Well, I do have an allergist, but he gave me a skin test and bloodwork, which came back negative. But he says that if I eat bread it would kill me, "don't eat bread". <-- his diagnosis. I'm just kind of thinking about trying pure gluten on my own to rule that out but not sure how to do that.
  24. SandraLAVixen
    Well Dr Oz tends to make shows that over-simplify (using props and animations) very basic first-year med student topics. What he teaches is true, but it's very basic stuff that is made for baby-mind digestible audiences. PS: I work in the film industry here in LA, met his crew once on a shoot, his props were actually quite elaborate.
  25. SandraLAVixen
    Like the title says, which has the most/highest gluten content; semolina/pasta made from durum wheat, pizza crust (made from wheat flour), or a slice of wheat bread? Also, WHY do they contain more gluten?
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