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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.
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?
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?
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)
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.
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.
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.
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.
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.
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.