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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About SandraLAVixen

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    • Gender Female
    • Location Los Angeles

    SandraLAVixen's Activity

    1. SandraLAVixen added a post in a topic Wheat + Sleep = No Pain?! I Think I Found My Cure! (Possibly?)   

      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)

      So that's all I know so far, and I'm just trying to figure out what could this be, I have to find an explaination to what I have.
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    2. SandraLAVixen added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Wheat + Sleep = No Pain?! I Think I Found My Cure! (Possibly?)
      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 (a neurotransmitter) when my Carcinoid urine test (for some other condition) came back low (but not clinically significant low) on serotonin by-product.

      I'm now up to eating two wheat danishes every morning, normally that would send me to the ER, but I go immediately back to sleep and there is no pain.

      Has anyone else heard of being NCGI and then trying to sleep more and then being able to eat wheat again? Could I have just been low on serotonin all this time?
      • 9 replies
    3. SandraLAVixen added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Serotonin And Wheat/bread/pasta/gluten Reactions?
      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 would be minimal if not absent. Which otherwise would trigger intense pain and send me to the ER.

      I think I basically need more serotonin (or sleep?) in my system otherwise I would have extreme pain after consuming anything with gluten.
      • 1 reply
    4. SandraLAVixen added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Test Results Back, Low Serotonin?
      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 serotonin.

      I have been gluten-free for the 2 weeks after my test, but I do NOT feel better.

      I am now feeling nauseous all the time now, like my stomach is spinning around and its dizzy. It certainly better than the pain, thrashing, and passing out after eating anything with gluten, but this still makes it impossible for me to even walk.

      I am pretty certain I am NCGI, but avoiding gluten seems to bring on another symptom. I just don't know what to do.

      What could this be? and what does low serotonin mean?
      • 2 replies
    5. SandraLAVixen added a post in a topic Why I Still Eat Bread...   

      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's food supply runs out and there is only bread left, then what do I do? (it's silly but she actually asked me that and I didn't know how to answer)
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    6. SandraLAVixen added a post in a topic Why I Still Eat Bread...   

      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 to check for eosinophil infiltration?
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    7. SandraLAVixen added a post in a topic Update, Survived 2 Weeks On Gluten For Test   

      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 and think (slept for 14 hours last night).
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    8. SandraLAVixen added a post in a topic Why I Still Eat Bread...   

      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 don't want to pin it down to NCGI in case this is still something else, what if its endometriosis or some other abdominal injury I sustained while performing last Christmas (the same time this all suddenly started)?

      I feel like I need a bit more time and to do absolutely every test possible to rule anything else out before I stick with NCGI.
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    9. SandraLAVixen added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Update, Survived 2 Weeks On Gluten For Test
      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 I had a 2 week long surgery on my stomach.

      I'll update with the results as soon as I get them back from the lab, I really hope these tests are reliable since I know I was in pain during them.
      • 6 replies
    10. SandraLAVixen added a post in a topic Why I Still Eat Bread...   

      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 that hurt. I actually have never eaten oats before in many years, so I have no idea how I would react to that.
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    11. SandraLAVixen added a post in a topic Why I Still Eat Bread...   

      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, and they are just not taking it seriously. They think it's all psychological, because all the tests come back normal and I'm so sad and frustrated.

      I also want to make sure there is not something else, not some other test I missed, in case I have something else. I don't even understand how NCGI can damage something and no damage is showing up anywhere.

      PS, just so you know, I don't eat really painful breads (like pizza or pasta), I haven't eaten pasta since December 2012. I only try very mildly painful breads just to test and always a new type of bread each time.
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    12. SandraLAVixen added a post in a topic Elimination Diet So Far, Is It Gluten Or Wheat?   

      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 was not visualized so we assumed it got flushed.
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    13. SandraLAVixen added a post in a topic Why I Still Eat Bread...   

      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 else that is happening and think that I'm okay just avoiding gluten or wheat.

      PS: was gluten-free for a couple of months which I had the endoscopy, problem... plus almost all the labwork were done at Quest Diagnostics, I assume they are reputable?
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    14. SandraLAVixen added a post in a topic Elimination Diet So Far, Is It Gluten Or Wheat?   

      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 which I sometimes thrash, like a seizure, but I'm conscious of most of it so I don't think it's a real seizure.

      The next day I feel like I just had major surgery or a bunch of aliens went into my body and had a war or something, the pain afterwards is minor, but dull and nauseating for the next day or two.

      Recently I found that Elavil relieves all of the dull pain and nausea the day after. I'm on it right now. Elavil was the most significant find to this day and I'm still not sure what it means.

      I doubt I can find a doctor to do the endoscopy again any time soon, but I will try later on after other tests have been done (I'm still having a carcinoid test and redoing Celiac profile bloodwork).
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    15. SandraLAVixen added a post in a topic Elimination Diet So Far, Is It Gluten Or Wheat?   

      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 out that it was bread that caused my pain and I probably would not be here today because I could not eat food.

      That is why I want to keep eliminating and trying different things until I find out exactly what part of gluten or wheat is causing this and why it is causing this. People's metabolism and pain to foods don't just suddenly happen over night. I ate so many pizzas the week before Christmas 2012 and nothing happened, then just one day after it becomes something that sends me to the ER, that requires studying.
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