Hi everyone, I haven't posted out here in months. I was wondering if anyone with an actual biopsy positive for celiac could message me. I have crazy symptoms (I know, don't we all ! ) but I can't find anyone with these particular symtoms. My biopsy was positive for Celiac, or had the same characteristics as celiac. But I just have a feeling thats not it. So here's a quick synopsis:
I have episodes (after eating ) where I just get this scary feeling that something is off...I honestly don'y know how to put it into words. Anyway, then I feel like I am paralyed from the head to chest. Literally. I can't swallow, jaws start locking , etc... Scares the absolute hell out of me. After every one of these episodes I either have to pee like a drunken mess. I mean PEE. Serioulsy. And I hadn't even drank anything. Another time, when I wasn't peeing like a race horse, I was cramping really bad in my legs and feet. Both of these are signs of dehydration. It has to mean something. But what???????? I am now down to 94 pounds. Does anyone have a similar symtom? I have had numbness, timgling, brain gog, pain, etc...Nothing scares me like this. If anyyone reading this can enlighten me, please do.
Oh yeah, I have a really hard time now clearing my throat, ear pressure, feeling of being strangled (sort of, more like pressure around my neck, not throat).
Thanks so much
Posted by bettyg (Member # 6147) on :
katc, could you break up that long paragraph into many short ones so we neuros can read, comprehend, and then try to help you out big thanks
Posted by timaca (Member # 6911) on :
Katc~ If you have a positive biopsy for celiac then you should pursue that angle of your health. There are some great celiac boards that can help you.
Also get checked out for B12 deficiency. That can often go along with celiac disease and B12 deficiency can cause some bizarre symptoms.
Best, Timaca
Posted by Lymetoo (Member # 743) on :
Good ideas, Timaca! B12 deficiency is a big possibility.
PS... Don't ignore a positive biopsy.
Posted by nenet (Member # 13174) on :
Breaking up for bettyg and others so katc can get more replies/help:
quote:Originally posted by katc: Hi everyone, I haven't posted out here in months. I was wondering if anyone with an actual biopsy positive for celiac could message me.
I have crazy symptoms (I know, don't we all ! ) but I can't find anyone with these particular symtoms. My biopsy was positive for Celiac, or had the same characteristics as celiac. But I just have a feeling thats not it. So here's a quick synopsis:
I have episodes (after eating ) where I just get this scary feeling that something is off...I honestly don'y know how to put it into words. Anyway, then I feel like I am paralyed from the head to chest. Literally.
I can't swallow, jaws start locking , etc... Scares the absolute hell out of me. After every one of these episodes I either have to pee like a drunken mess. I mean PEE. Serioulsy. And I hadn't even drank anything.
Another time, when I wasn't peeing like a race horse, I was cramping really bad in my legs and feet. Both of these are signs of dehydration. It has to mean something. But what???????? I am now down to 94 pounds. Does anyone have a similar symtom?
I have had numbness, timgling, brain gog, pain, etc...Nothing scares me like this. If anyyone reading this can enlighten me, please do.
Oh yeah, I have a really hard time now clearing my throat, ear pressure, feeling of being strangled (sort of, more like pressure around my neck, not throat).
Thanks so much
By the way katc - I have very VERY similar issues as you when I eat gluten, or any food that I have developed a sensitivty to. I don't get the GI problems (except for when I eat most dairy).
It's ALL neurological/CNS etc. for me. Spasms, seizures, insomnia, anxiety through the roof, really harsh nightmares, limb jerking, frequent need to urinate, internal tremors, etc., etc.
To clarify, I do not have celiac (at least when I was tested for it in 2005). I only discovered I had an intolerance to gluten and other foods when I did an elimination diet. Apparently you can't test for intolerance or sensitivity to foods, so the only way to find out is via elimination and reintroduction.
I hope that was helpful in some way. I'm not sure if what you and I are experiencing is the same, but wanted to put in my 2 cents. Let me know if you have any questions or want more details abotu my experience.
Posted by nenet (Member # 13174) on :
What if you don't have Celiac, but have an outright *allergy*? Does that even make sense? Can that happen?
Or can you have both Celiac and an allergy? I knowthat Celiac causes an inability to digest gluten... and allergy is a histamine response to something seen as a poison/invader to the body. So maybe this is possible?
It jsut sounds liek you have a super allergy to gluten and/or maybe something else in wheat too. And maybe Celiac on top of that?
![[Smile]](smile.gif)
big thanks