Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sleep Paralysis?

Waitingindreams

Recommended Posts

Waitingindreams Enthusiast
Waitingindreams
Posted

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)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

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
Waitingindreams
Posted
  • Author

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
Cary
Posted

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. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      This sounds very similar to the neuropathic pain I experienced with type two diabetes. Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6. These are vitamins frequently found to be low in people with pre-diabetes and diabetes. Remember that blood tests...
    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748
    MaggieSc
    Newest Member
    MaggieSc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.