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Hi:new, Scared, Relieved

debster-cbus

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debster-cbus Newbie
debster-cbus
Posted

Sorry but this might be a long read.

Hello ALL! I'm new around here, but I'll be visiting a lot now that I may be diagnosed with Celiac. I just got my blood test back, from a eurologist, and it says I have antibodies that are fighting gluten in my body..so I'm being sent to a gastrologist. So I immediatly searched the net and found this site.

For years, I would say the past 7 or 8 I've been having the weirdest symptoms. My symptom have always been related to my head and central nervous symptom--never my stomach or intestines--so I always thought what I had had to do with my head. I thought I had MS for the longest time and doctors couldn't diagnose it.

I've been coping, not going to the doctors, because my symptoms would come and go ... and I really couldn't explain some of them. So I'd go to the emergency room every now and again or my real doctor, and because my symptoms weren't classic, no one ever thought it could be Celiac, or even suggested it. So I researched my symptoms on the net and I'd been trying to eliminate certain things from my diet, because I thought that it might help. First it was Aspertame, that did help a bit, then just recently, it was MSG, and that seemed to help, well of course until I ate a piece of bread or something with gluten.

Right now, I'm really scared that since this has gone undiagnosed for so long I may have really damaged myself... I hope not, but I'm also really relieved! If I can finally find the reason why I'm dizzy, have pins and needles, balance issues, foggy head, chest pains, vertigo, then I really don't care about giving up gluten I suffered for far too long.

So I've read that if it goes undiagnosed it may cause other food allergies, is this true? I ask because I have been two days without gluten, yesterday and today, but when I ate some organic peanut butter yesterday, I had a bad reaction, with my head...I honestly just hate eating because I hate the reactions.

Thanks for this site!

Scott

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GeoffCJ Enthusiast
GeoffCJ
Posted
Right now, I'm really scared that since this has gone undiagnosed for so long I may have really damaged myself... I hope not, but I'm also really relieved! If I can finally find the reason why I'm dizzy, have pins and needles, balance issues, foggy head, chest pains, vertigo, then I really don't care about giving up gluten I suffered for far too long.

Scott

Scott,

Welcome! I've recently figured out the gluten thing. I had the stomach issues, but also the pins and needles/numbness/pain in my hands and feet. It gets really bad sometimes, even making it hard to walk or type (which is important, since I work at the computer a lot). I also suffered insomnia for years, which I never even associated with the stomach issues.

Since being mostly gluten free for about 5 weeks now (mostly is because I sometimes make mistakes). My stomach issues are much, much better, my lack of insomnia is becoming it's own problem, I keep sleeping through alarms! I'll admit, my hands and feet seem to be improving the slowest, I seem to have issues slightly less often, but they are just as severe. But again, these things take time.

Anyway, good luck! I've found the learning curve on this diet is a bit steep, gluten is everywhere! But it is doable, and the results are worth it. Have you downloaded the "newbie" kit? it's well worth a read.

Geoff

GFBetsy Rookie
GFBetsy
Posted

You can find a link to the newbie kit on nini's member page.

Welcome!

aikiducky Apprentice
aikiducky
Posted

Welcome to the forum.

I wanted to quickly point out that if you have mainly neurological symptoms, there's a possibility that you don't have a lot of intestinal damage. So it is possible that the gastro doesn't find enough evidence for a celiac diagnosis, but that should NOT mean that you shouldn't try the diet. After all the testing is done, don't consider testing to be complete until you have tried the diet for a considerable while to see if it helps.

Pauliina

Nancym Enthusiast
Nancym
Posted

Check out the Neurological section of The Gluten File, link in my signature. There's also a doctor called "The Renegade Neurologist" on the internet who has blogged about Celiac and the brain. It isn't something you're likely to get a medical diagnosis for from 99.5% of the doctors out there, very, very, very few are even aware of this. And you can have these symptoms and even brain lesions that have gliadin antibodies and have a fine intestinal biopsy.

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