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Member Since 12 Jul 2012
Offline Last Active Sep 29 2012 09:07 AM

#814805 What Happened To Me? Could Celiacs Have Caused All Of This?

Posted by on 30 July 2012 - 10:10 AM

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...
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#812026 My First Celiac Kiss :(

Posted by on 18 July 2012 - 06:55 PM

So, since I didn't have any gluten, do you all think I probably got the stomach ache from the guy's 'filthy' mouth?

How do you know what's causing issues for you when there are other variables like foods or cosmetics that may be giving you problems?

Do you think people who don't get symptoms in the same situation are just not as sensitive or not as aware of what's happening in their bodies? My only GI issues were stomach cramps and bloating, but it's been many years since that was a regular occurrence. My Celiac got bored in my intestines and went for my brain and adrenals. B)
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