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Sleep Paralysis?


Waitingindreams

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Waitingindreams Enthusiast

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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shadowicewolf Proficient

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.

Waitingindreams Enthusiast

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.

  • 4 weeks later...
Cary Newbie

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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    • trents
      Welcome to the celiac.com community, @ainsleydale1700! Your doctor gave you some bum steers.  First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure. Beginning the gluten free diet ahead of time will allow the lining of the small bowel to heal and there will be no damage to see from the biopsy. How long were you gluten free before the biopsy was done?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
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