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

Secondary Autoimmune Narcolepsy From Celiac


caek-is-a-lie

Recommended Posts

caek-is-a-lie Explorer

I recently read that Celiac is known to cause secondary autoimmune disorders and allergies. I have Narcolepsy that is triggered by gluten, but I also have some lingering Narcolepsy symptoms on a gluten-free diet that seem to be from permanent damage.

I found out I have a Celiac haplotype DRB1*07-DQB1*0202 and I also have a Narcolepsy/Celiac gene DQB1*0301. Since gluten triggers most of my symptoms and I have what's considered 'atypical' cataplexy (ie: 'spontaneous' several days after ingesting gluten) in addition to classic cataplexy triggers like laughing, which isn't as severe, I figure my Narcolepsy is secondary with some minor permanent damage from the Celiac.

I'm going to run it by my doctor next time I go in. I did tons of research on it...it was fun! :)

  • 3 weeks later...

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



Celiac.com Sponsor (A8-M):



mattathayde Apprentice

this is interesting, i am convinced both my parents have celiac disease and now seeing this it adds to my argument for my father even more

-matt

mommida Enthusiast

Have you run accross any statistic of Celiacs that are Narcoleptic? Do you think anyone diagnosed with narcolepsy should be tested for Celiac?

caek-is-a-lie Explorer

There are no official stats on it, which is something I'd like to do myself in grad school, but from what I've seen on forums and from an informal poll I did, there are a lot of people with Narcolepsy that could benefit. The Narcolepsy genes have also been found to be Celiac genes. IMHO it would be beneficial to screen all Narcolepsy patients for Celiac, although a blood test might not catch it if the transglutaminase is primarily in the CSF.

  • 9 years later...
CristiG Newbie

I am interested in this topic. I have one son diagnosed with Celiac and another tested twice for it but with inconclusive or negative results for Celiac, that just got diagnosed with narcolepsy. I am trying to see if there is a link. Any research or info on this would be gratefully received. 

Posterboy Mentor
53 minutes ago, CristiG said:

I am interested in this topic. I have one son diagnosed with Celiac and another tested twice for it but with inconclusive or negative results for Celiac, that just got diagnosed with narcolepsy. I am trying to see if there is a link. Any research or info on this would be gratefully received. 

CristiG,

Have you tried magnesium it can help a lot of issues. . . especially where sleep is involved.

This guy is not saying but asking is this a cure.

Here is a good summary of the problem and how magnesium might help.

Open Original Shared Link

He sights research about it can help tourettes.

Here is the link to the tourette research and the possible magnesium connection.

Open Original Shared Link

Magnesium is great stuff when you take it in a well absorbed form like Magnesium Citrate or Magnesium Glycinate.

Again ******this is not medical advice but I had several wasting issues like muscle cramps, CFS, and a racing heart before taking Magnesium first as Magnesium Citrate and now as Magnesium Glycinate (non-flushing form).

And I thought I would never be able to help my high heart rate. .. resigned to always having a fast beat (it is genetic and runs in my family) but a month after switching over the Magnesium Glycinate form my heart rate went down 10 to 15 beats a minute to a normal level.

I do take medicine for my heart rate but it was still 20pts too high until I changed over to Magnesium Glycinate and why it is a little more expensive than magnesium citrate it (Mg) works great for my heart while the Citrate only helped my energy, muscle cramps, and fatigue issues.

I hope this is helpful and if I had a sleep problem of any kind I would recommend you look into it.

I used to never dream and I now regularly dream because magnesium helps me reach deep REM sleep and I wake rested with enough energy to take on the day.

If  you are a celiac or even NCGS and/or have other GI problems you are more at risk of being low in magnesium or if you take a PPIs for your heartburn.

Here is the NIH health fact page on Magnesium.  You can read more about Magnesium there.

Open Original Shared Link

I hope this is helpful.

****again this is not medical advice but taking Magnesium first as Magnesium Citrate then Magnesium Glycinate helped my sleep and energy problems.

2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included

Posterboy by the grace of God,

 

1desperateladysaved Proficient

I had narcolepsy in my gluteny past.  Gluteny past meaning the time when I freely ate gluten since I didn't know I had celiac at the time.  I have since solved this with major diet changes both removing gluten and others.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.