My Story - I Believe I Have Celiac

[BadContrakt]

Hello,

 

I have turned myself away from writing this post for several months now because someone may give me too much information and I will, will, have a panic attack lol. I am going to give you a brief (or maybe not so brief) description of my story, my symptoms, and my conclusion, and I sincerely hope somebody doesn't come in here telling me that I'm wrong, and I actually have something else much worse (you know the guy. He'll come in ehre saying his uncle had this and he died) which would set my anxiety off like a bomb. So please refrain lol.

 

One day, I had a completely normal day. So normal that I don't remember what happened during the day. All I know is it was normal. No exciting new ventures, no exciting foods ingested, no spectacular drugs taken, nothing. It was night, I was playing World of Warcraft, and I said "Alright guys, I gotta go. I have class in the morning." Logged off. Went into my bedroom, laid in the bed, and about 2-3 minutes into resting (hadn't fallen asleep yet) my lips got tingly. My face got tingly 4-5 seconds later. Then my neck. Then my whole body was tingly and numb-ish feeling. I woke my wife up and told her and said "Maybe it's because I'm just really tired. I'm just going to sleep it off."

 

Woke up completely normal. Thought nothing of the numbness I experienced last night. I showered, hopped in the car and drove to campus. Walked to class, sat in the classroom, and about 30-45 minutes into class (sitting, listening to lecture as normal) my lips got tingly.... My stomach dropped. I thought... Oh no. This wasn't just some random thing. This is something wrong. I walked out of class immediately, called my mom and told her about last night and what was happening now. She told me to get to the hospital immediately, "Don't mess around with numbness kid! You should have gone into the hospital the second you felt numb! A 22 year old shouldn't have those feelings!" So I went to the campus clinic and they checked me out. He basically said "I don't know why you're numb, I have no explanation for that. What I do know is that your heart is racing at 150 BPM and although I realize you're experiencing anxiety, that is a really fast heartbeat."

 

So I went to the ER. They basically checked me out for stroke symptoms and other deadly things, and found me to be healthy. The heartbeat was sluffed off by them as "anxiety" which I was definitely having.

 

I went home still numb and tingly in the face and lips. Night came, I laid down to sleep and woke up in the middle of the night with my whole entire left arm and left leg painfully numb. I shot out of bed so fast it was unbelievable. I started getting dressed and said "I'm going to the ER" and my wife, of course, came with me. I got there and they said "anxiety" again. So I scheduled to see a neuro doctor the next day. I don't really remember what happened at that appointment, but what I do remember is that he guessed it was MS. They put me on 5 days of 1,000mg steroids per day and the numbness did get better (I think). I went through the 5 days of steroids OK (not well, just OK, my body could feel how damaging those steroids were on my system) and after the 5 days they put me on the pill form to "ween" me off the steroids. I'm sure many of you know what I'm talking about here. Take 12 on day 1. Take 8 on day 2. And so on until I've weened my system off the steroids.

 

On day 3 I couldn't take it. I couldn't sleep. I was having immense angst, and was just going insane. I was still getting numb every night but I was OK during the day. I went to the ER again in the evening. I told them "I am being checked into the hospital, no matter what it takes." and after some pushing, they let me in. I should probably mention that up until this point, my heart had been completely forgotten about. The clinic on campus was worried about my heart, but the ER never caught on to it. So I forgot about it too.

I was checked into the hospital for 7 days. They battered me with dozens of tests. to find out 2 things: Why am I numb, and why is my heart racing? My heart would be at about 100 lying down. 130 sitting up, and 150-185 standing up. They had my hooked up to a monitor for all 7 of those days and the monitor was my worst enemy. Constantly beeping telling me I'm having tachycardia!

 

Here's the end result. I was still getting numb throughout my hospital stay. I got off the steroids and wasn't taking any drugs anymore other than an anxiety pill called Ativan. It helped me through the tough nights of no sleep and semi-painful numbness. They checked my heart out a LOT and found it to be a perfectly shaped, perfectly functioning heart. No abnormalities whatsoever with my heart, or with the electrical pulses that run the heart. 100% ship shape.

The numbness, they thought was MS. The MRIs showed them that I have 2 lesions (I think it was 2) and lesions usually go hand in hand with MS. They shoved a bunch of MS paperwork in my hand and basically said "you gotta get out" I wanted to stay longer. I felt like I was dying of anxiety and sleeplessness and my heart was so bad I thought I would have a heart attack if I had to go home and get food and go to the bathroom by myself. But they pushed me out. Throughout my 7 day stay in the hospital they gave me one good piece of advice. "MS patients usually go gluten free. It helps many of them control symptoms" So I went on a low gluten diet when I got home.

 

After about 6 months of being out of the hospital and on that diet I was having VERY sparse numbness. Maybe once a month I would wake up with numb-ish lips and that would be it. I decided to completely remove gluten from my diet all together and go 100% gluten free. No symptoms whatsoever. I was living a completely normal life. Working and getting back into things. My heart was still racing, but not nearly as bad. I had a holter monitor put on me and they found my heart to be functioning fine, and ranging from 39 BPM to I think 140 BPM. Fairly normal. The high side was a bit high but much better than in the hospital. Today as of writing this, my heart probably never goes past 110 at home, and when working probably peeks at about 140. I feel pretty comfortable with it and have been to a couple heart appointments, checked out again, and all was well in all of them. They basically told me "you just have a higher BPM than average. Nothing to worry about for a skinny tall young guy."

So after I went completely gluten free at about the 6 month mark, as I said, I had no symptoms of numbness. I just celebrated the 1 year anniversary of my numbness attack September 30th and was completely symptom free for several months, however, just recently, I was getting it again. About 3-4 weeks ago I was getting hyper sensitive in the hands, lips, and face. I was about to melt down when it started happening because I knew the horror was returning. The anxiety, the hospital visits, I knew it was all coming back. I told my wife "check the cupboards and make CERTAIN that I'm not eating any gluten!" she checked and it just so happened that I was. I picked out a new type of pasta which is usually a gluten free brand, but they also have a gluten-containing line which I mistakenly grabbed a few when I went with shopping. I, obviously, didn't eat that pasta again and like magic, the hypersensitivity and mild tingling/numbness went away. I am now, 3-4 weeks later, again completely symptom free. After that happened I was almost certain it was celiac. I can't explain the heart thing. I really don't know and neither do the doctors, but the numbness and tingling, I am almost certain is from celiac. And we haven't even gone over the symptoms I'm experiencing yet either:

Sleeplessness - when NOT on gluten I still get sleeplessness. I used to be able to sleep (before my attack) all the way through the night like a rock, but ever since the attack my sleep hasn't been quite so easy.
Upset stomach - only when eating gluten - Occasionally when consuming ice cream do I get a VERY mild upset stomach. Possibly from celiac or maybe because I don't eat dairy much so my body doesn't appreciate it, otherwise my stomach is fine on a daily basis of my gluten free diet.
Fat in stool - I don't really see any connection here between my diet and when the symptom occurs. Sometimes the stool is completely normal looking and sometimes there's floaty, stringy, white-ish fatty looking stuff in the water and on the stool. Sometimes I have it, other times I don't. It may have something to do with my occasional dairy consumption (because I like cheese on my pizza, and I like ice cream, etc) but not certain.
I cannot gain weight - Period. I eat and eat and eat and eat and can't gain any weight. I am 6 foot 3 and weigh 145 pounds. I stuff it down my face and it just doesn't seem to stick.
I need to sleep 12 hours, even when not working - I sleep. And a long time. I can do nothing, play games and do some minor house work all day, and go to sleep at midnight and wake up at noon the next day without even trying. And if I don't get enough sleep, I'm overly fatigued and can't function. I NEED my sleep.

I guess at this point I can't think of much else. Ask me and I'll tell you. The main reason for making this post was to just get some opinions from people with Celiac. I have not been diagnosed and frankly, I don't want to be. Don't you have to be on a gluten-containing diet to be properly diagnosed? If you do, I'm not doing it. There's no way I'm going to purposely put gluten in my body and give myself numbness and tingling and damage my own body just so a doctor can tell me "Yes you have celiac" which is basically what I already have told myself with my own experiments. Do you think I have it?

[nvsmom]

Those can be symptoms of celiac disease. No doubt about that. The numbness is neuropathy, which occurs in some celiacs and can often be slow to improve. Anxiety is a common symptom, as is fatty stools and fatigue.  Even the mri lesions are sometimes seen in celiacs. I wouldn't be surprised if you do have celiac disease but unfortunately you are right, you need to resume eating gluten for the tests to be accurate.  

The blood tests, including tissue transglutiminase IgA and IgG, deaminated gliadin peptides IgA and IgG, endomysial antibodies IgA (and the total serum IgA control test) all require 8-12 weeks of 1-2 slices of bread per day.  The biopsy is a bit better and only needs 2-4 weeks.

it is possible you have non-celiac gluten intolerance (NCGI).  The symptoms are often the same as celiac disease but there is no diagnostic blood test available. Either way, it sounds like you should stay gluten-free.

welcome to the board.

[BadContrakt]

50 minutes ago, nvsmom said:

Those can be symptoms of celiac disease. No doubt about that. The numbness is neuropathy, which occurs in some celiacs and can often be slow to improve. Anxiety is a common symptom, as is fatty stools and fatigue.  Even the mri lesions are sometimes seen in celiacs. I wouldn't be surprised if you do have celiac disease but unfortunately you are right, you need to resume eating gluten for the tests to be accurate.  

The blood tests, including tissue transglutiminase IgA and IgG, deaminated gliadin peptides IgA and IgG, endomysial antibodies IgA (and the total serum IgA control test) all require 8-12 weeks of 1-2 slices of bread per day.  The biopsy is a bit better and only needs 2-4 weeks.

it is possible you have non-celiac gluten intolerance (NCGI).  The symptoms are often the same as celiac disease but there is no diagnostic blood test available. Either way, it sounds like you should stay gluten-free.

welcome to the board.

Holy. Lots of big words there! Yeah. I don't want to do the tests if they require me to have to do that to myself. My dad simply put it this way... "If you don't eat gluten and you don't get any symptoms... Then stop eating gluten. No need for a doctor to tell you what you already know."

Does NCGI still cause the same problems Celiac does later in life?

[bartfull]

Not that much is known about NCGI, but one thing they have found out through studies is that people with NCGI are even MORE likely than folks with celiac to have neurological problems. That means it is just as important, maybe even more so if that's possible, to be as strictly gluten-free as you can.

If you go to the coping section here you'll see the "Newbie 101" thread pinned to the top. It'll help you root out any possible cross-contamination that might be slipping into your diet from things like an old toaster, scratched plastics, the older jar of mayo that may be contaminated, wooden spoons, and any supplements or meds you may take.

 

[squirmingitch]

The BPM with the heart thing? Hello! I get glutened & up it goes. No gluten & I'm as normal as anyone else. Before I went gluten-free; my bp was rising year by year -- not through the roof or even where they wanted to put me on bp meds but it was getting close to that. After some months gluten-free my bp began going down & finally resumed being as cool as a cucumber. However, the BPM was the last to go back to normal.

 

Welcome to the club.

[frieze]

are you anemic, sl hyper thyroid?  with a metabolism like yours, you are not going to gain wt.  perhaps an endocrinologist is the next stop...