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SandraLAVixen's Photo

SandraLAVixen

Member Since 21 Feb 2012
Offline Last Active Dec 10 2012 05:46 PM

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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!!

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Member Title Community Member
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Topics I've Started

Wheat + Sleep = No Pain?! I Think I Found My Cure! (Possibly?)

04 December 2012 - 02:26 AM

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?

Serotonin And Wheat/bread/pasta/gluten Reactions?

27 October 2012 - 12:53 PM

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.

Test Results Back, Low Serotonin?

20 October 2012 - 11:29 PM

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?

Update, Survived 2 Weeks On Gluten For Test

08 October 2012 - 11:48 PM

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.

Difference Between Gluten And Wheat Skin Test Vs Actually Eating It?

01 October 2012 - 06:25 PM

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 "scratched" onto the skin vs actually eating it?

Because I was NON-REACTIVE to the skin test but when I eat foods with gluten in them I seem to get more of a reaction.

My Celiac profile bloodwork, endoscopy, pillcam, biopsies, were all NORMAL/NEGATIVE.