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SandraLAVixen

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About Me

"I'm not your classic medical wheat flour/gluten reaction case"

I have always eaten breads, wheat, pasta, and gluten all my life without any problem.

Then the day after Christmas 2012, I suffered excruciating pain after dinner and then passed out.

Through the elimination diet, I figured out on my own that it was anything that contained wheat flour or semolina that caused this.

Before I never had this reaction, it came on so sudden that it was bizarre.

I have had every medical test in the book done, Celiacs (blood work, genetics, biopsy, etc) come back NEGATIVE. I'm also NEGATIVE for any wheat or gluten allergy.

Yet every time I eat anything containing wheat flour or semolina I have excruciating pain and pass out.

I'm hoping anyone out there who has any idea what this may be or suggest things for my doctors to test for, please let me know, thank you!!

  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 started following joolsjewels
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  14. 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...
  15. 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...
  16. 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...
  17. 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...
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