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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Very Strange/scary Sleep 'tremors'
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Chele8198    0

I was diagnosed with celiac disease about 5 months ago and have been trying my hardest to be gluten free since then. I have had a few times where I have accidently ingested gluten and paid for it, but lately I'm not sure what's going on. I ate at a lot of restaurants the past week because my friend was visiting, and since she left I have done nothing but sleep for the past 3 days. However, while I sleep I have been having this crazy feeling that I can only describe as a seizure... although I have never had one I would imagine it would be like this. I am awake but cannot move at all and cannot speak. My insides feel like they are vibrating from my chest to my head and I can't move. I can HEAR the vibration inside me. The worst part is, I want so badly to be able to scream for help and/or nudge my sleeping boyfriend. I am worried, and really not even sure if this is related to celiac or not. Has this happened to anyone else? Or does anyone know what this could be called?

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kareng    1,992

How scary! Can your bf stay awake and see if you are shaking or anything odd? Is it possible you are having a vivid dream? If this is really happening, you should see a doctor immediately.

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gary'sgirl    28

I use to have this happen when I was a kid. In fact I'm a little freaked out right now, because I have never heard of anyone having this happen before and whenever I would describe it to people they would just act like they didn't believe me.

I haven't had it happen since high school, but it was very frightening. I don't remember if I had the vibrating, but everything else you described was exactly what happened to me.

When I would tell my mom what happened she thought I was just dreaming or something, but I know that it really happened and she believes me now. If I were you I would make an appointment with a doctor right away.

Please let me know if you figure anything out. I had just been thinking about this a couple of weeks ago and wondered if it could have been the gluten thing that had been undiagnosed.

I hope you find out what's going on, because I know from experience how scary it is.

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Although this is very scary and distressing, it's probably not something to be overly concerned about. This used to happen to a friend of mine - he would feel pressure on his chest, he couldn't move and he would see figures in his room. I did a lot of research to understand it... it affects many people for a variety of reasons, mainly stress.

http://www.webmd.com/sleep-disorders/guide/sleep-paralysis

Start here and you can find much information online. See if this matches up to what you're experiencing.

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mushroom    1,205

I did not reply to this before because I did not have the vibration/seizure type sensation, but two mornings in a row I woke up totally unable to move - freaked me out!! :blink: I just thought, well, I'll go back to sleep and see what happens, and when I awoke again it was okay.

I thought it might be connected to a combination of meds I was taking - a muscle relaxant and a valium at bedtime for sleep, so cut out the muscle relaxant, and it didn't happen again, but it was scary stuff, because I was by myself, staying in my mom's house while she was in hospital with terminal cancer.

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Korwyn    81

I have had this happen a lot and it continued (even got worse in some ways) after being diagnosed. It feels to me almost like an electric current is running through my body. It is (for me) adrenal caused. Soy triggers it also, probably because soy triggers an adrenaline rush with the panic attacks. I'm being treated for borderline extreme adrenal fatigue, and I was convinced it was mostly all in my head so I stopped the treatments for two months. I'm back on them. :)

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Chele8198    0

I have had this happen a lot and it continued (even got worse in some ways) after being diagnosed. It feels to me almost like an electric current is running through my body. It is (for me) adrenal caused. Soy triggers it also, probably because soy triggers an adrenaline rush with the panic attacks. I'm being treated for borderline extreme adrenal fatigue, and I was convinced it was mostly all in my head so I stopped the treatments for two months. I'm back on them. :)

Wow! So comforting to hear. Thank you very much. I went to Urgent Care today and the doctor I saw didn't even know what Celiac Disease was. He said, "You've been diagnosed for a while, you should know how going off the diet will effect you." I was so frustrated! And, I was only diagnosed in February... Anyway, thanks so much!

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eker    0

I was diagnosed with celiac disease about 5 months ago and have been trying my hardest to be gluten free since then. I have had a few times where I have accidently ingested gluten and paid for it, but lately I'm not sure what's going on. I ate at a lot of restaurants the past week because my friend was visiting, and since she left I have done nothing but sleep for the past 3 days. However, while I sleep I have been having this crazy feeling that I can only describe as a seizure... although I have never had one I would imagine it would be like this. I am awake but cannot move at all and cannot speak. My insides feel like they are vibrating from my chest to my head and I can't move. I can HEAR the vibration inside me. The worst part is, I want so badly to be able to scream for help and/or nudge my sleeping boyfriend. I am worried, and really not even sure if this is related to celiac or not. Has this happened to anyone else? Or does anyone know what this could be called?

Chele8198, I signed up just so I could reply to this! I have had the exact same thing occur to me on many occasions, it was scary the first time, not so much anymore because I can overcome the paralysis if I focus my mind enough. Basically, what you just described is part of what is referred to as "out-of-body" experiences by new age types. Some of us like to just "pop out" of our bodies while sleeping and wander the universe in spirit form (seeing, feeling or hearing other beings while in this state is also common), usually not aware of doing so or remembering what we do. Some people do remember where they go, and can do this consciously, whenever they want to. What you felt is what happens afterwards, as your soul is coming back into your body--I call it "settling back in" and it is a strong vibrating sensation in chest/abdomen area mostly accompanied by inability to move or speak. Once you are "back in" fully you can move and speak normally again. This is a very typical sensation amongst out-of-body travelers.

I am not at all certain it has anything to do with gluten nor that it is a disorder of any sort, although it certainly can be scary at first. It may be indirectly related, due to heightened sensitivity of nervous system from glutening... or even insomnia, as I suspect most people sleep through this without any recall.

On some occasions I have been able to interact with other beings--notably friendly animal spirits, who were definitely not in this physical plane of reality---while in this state. It is weird, true, but imo not dangerous.

I know others who have experienced it also--if they don't like it, usually they can just ask their angels or god to make it stop and it does. Again this makes me doubt that it is gluten, or only gluten, that causes it.

So I know that sounds all very woo-woo and all, and I hope everyone out there doesn't go into judgment over this, just thought you might want a different perspective on it.

Thanks to everyone for sharing. I have been gluten-free for 4 months with excellent results, self-diagnosed at age 45, your posts are helping me get it all sorted out, diet-wise.

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Mtndog    18

I had to respond to this because I have experienced something similar but not at night, when I nap in the afternoon (which I do daily because I have Lyme Disease). It just happened this afternoon- I was napping and could hear my dog going crazy barking because someone was at the door. I knew all this but I couldn't move.

I never really thought about it because, so far, it hasn't been REALLY scary. I have had panic attacks in my sleep which really stinks because you know you're having one, but can't wake up out of it. Apparently this is more common (panic attacks while sleeping) in African Americans, but I'm Irish. Go figure!

I just did a little research on it and read about sleep paralysis and that's what it sounds like. It recommends good diet, regular sleeping schedule, no alcohol, keep stress at a minimum (easy for them to say!).

Can you keep a daily journal of what you eat, when/how much you exercise, any stresses and see if there is some relationship. Doing this has always helped me figure out what causes what.

Regardless, I hope it ends and you feel better soon!

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oranssi.92    0

You have sleep paralysis (http://en.wikipedia.org/wiki/Sleep_Paralysis). I am a seventeen-year-old female, and this used to happen to me nearly every night, sometimes several times a night. I know how terrifying it can be--sometimes I would stay awake all night because I was terrified to go to sleep and let it happen again. Everything you've described sounds exactly like my experience of it. I've found that it happens to me the most in periods of stress...irregular sleeping patterns don't help either. Good luck! :-/

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GFinDC    609

I am just guessing, but it sounds like you took some chances eating out a lot and now you are having some symptoms. Maybe they will clear up after a while if you can keep strictly on the diet. Or you may find that you are reacting to another food besides gluten. It is not unusual for us to have or develop other food sensitivities and they can have serious effects. So if your symptoms don't clear up after a month you might want to eliminate some of the common problem foods, like soy, nightshades, corn, eggs, dairy etc. And then see if that helps.

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tarnalberry    314

Yup, sleep paralysis. Basically, your brain is waking up before your brain wakes up. (The parts of your brain that process sensory input wake up before the parts of your brain that operate movement.) It's freaky as heck, but not particularly dangerous, as I understand it. Always worth talking to your doctor, of course, particularly if you suspect something else of going on.

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