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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sleep Paralysis?

4 posts in this topic

I've had a semi-frequent issue with sleep paralysis for years now. That, mixed with my chronic fatigue and inability to stay awake even when struggling - led me to believe I had narcolepsy. I was tested for narcolepsy and diagnosed with Idiopathic Central Nervous System Hypersomnia..which is close to narcolepsy. This was in August of 2012.


I was prescribed a drug called Nuvigil, which I was paranoid about taking because of the side effects - not to mention it was very expensive. Now that I have been diagnosed with celiac disease, the sleep/fatigue issues are still there, but to a lesser extent.


I haven't noticed the sleep paralysis for awhile, but just today when I was napping (I'm sick, so I missed work) it happened a few times. It's terrifying, and I was wondering if anyone else has experienced this. Is there any connection to celiac disease/gluten at all? It's really, really scary - because sometimes I stop breathing in my sleep and I have to force myself awake. It's unsettling. (And no, I don't have sleep apnea or any other issues, I've been tested)


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I would get it every so often before i went gluten free. So far, I think i've only had it once in about two years or so.


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That's certainly good to hear. It hasn't happened with me in awhile either - this is the first time since I've been diagnosed, I think. It was happening pretty frequently before. What is scary is that sometimes I toss and turn and end up on my stomach with my face in the pillow..and then the paralysis would set in and I was suffocating, I couldn't breathe -- and I had to force myself awake so that I could move my face and breathe. This happened multiple times...but I sometimes stop breathing even when my face ISN'T in the pillow...like if I'm having a dream where I'm underwater or something. Ridiculous. The sleep specialist gave me no help or insight on this at all, so i do hope it will go away with time/a healthier diet.


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I used to have all sorts of issues when I was in my 20s, before I figured out all my problems.  I had serious constipation before the Celiac was ever discovered, and I therefore don't know if I always had Celiac or the Celiac only popped up after my gallbladder surgery.  But I always had headaches, migraines, insomnia, daytime falling asleep (even standing up), malaise, low weight, couldn't gain weight, skin problems, Raynaud's, and on and on. 


I noticed a problem with peanuts causing headaches when I was little, although family members scoffed over this. 


I also had some improvement with phlegm and maybe some other things by stopping dairy. 


Since having my gallbladder out and having the surgeon tell me I had Celiac disease and stopping gluten, I stopped having Raynaud's.  My insomnia seems more linked to constipation, but I supplement all my deficiencies, and that seems to be helping the insomnia also.  My pain issues (aching bones) is resolved now.  I take magnesium in the morning, calcium and vitamin D (2000 IU) at night, and 25 of zinc. 


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    • Learn more about testing for celiac disease here: http://www.cureceliacdisease.org/screening/ You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work.  While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ So, both the blood test and endoscopy are usually ordered.  There are some exceptions, but those are not common.  
    • Exactly what are your allergy symptoms?  Were they IgG or IgE?  Allergy testing as a whole is not super accurate -- especially the IgG.  Were you on any H1 or H2 antihistamines for the last five days  when you were tested?   As far as celiac testing, four days without consuming gluten probably would not impact testing.  
    • I've been seeing my dr for a few weeks now about my stomach issues. We've ruled out the gallbladder and h-pylori and today I had the celiac blood tests done. From the reading I've done the past two days, it seems to me that it's highly likely that I have it. I've had digestive issues for years, but they've gotten progressively worse over the past 6 months or so. Pain and nausea when eating, bloat, eternal constipation, dh rash, at it's worse, tight cramp-like pain in a fist under my sternum, radiating through my back and around my right side keeping me up at night. Also heartburn/reflux and trouble swallowing, etc. 

      Anyway, about 2 months ago, I needed a change. I didn't go to the dr immediately because it seemed pointless. (I've mentioned stomach ache when eating to drs before and been blown off.) So, I started the Whole30 elimination diet (takes out soy, grains, dairy, peanuts, and leaves you basically eating meat & veggies). Figured it would show me what I needed to take out of my diet and hopefully feel better. It worked- I felt great! And it seems that grains and gluten are my biggest offenders. But, now I've been off gluten prior to celiac testing. It's been 7 weeks. After 4 weeks I tested steal cut oats, that I later found out were probably glutened. And then nothing until yesterday. Yesterday I had 2 pieces of bread and a muffin and today I had two pieces of bread and then the blood test. Is this going to be enough to show up on the tests? My dr said that it would probably show up, since I had some yesterday and today and was currently having symptoms. But, google seems to say that I should be glutened for 2 wks straight before testing. Has anyone tested positive after just a little gluten? If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers. Obviously, gluten's not going to be a part of my life any more either way. 
    • So just to clarify  had not consumed any gluten for about 4 days before testing. I was assured by my allergist that it wouldn't affect the test. But what was alarming was that she retested my food allergies (my most recent reaction was two weeks ago) and every food allergy I have came back negative. I don't understand how that is possible. These food allergies developed when I was 20 and I am almost 24 now.
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