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

Myoclonus with extreme sudden fatigue


Keenr

Recommended Posts

Keenr Newbie

I have been gluten free since 2009. I was diagnosed w adrenal fatigue when I went to a functional medicine dr. Due to daily energy crashes with myoclonic jerks and difficulty walking ( dragging feet, needing to hold furniture) difficulty speaking and thinking- during these crashes. Once I got off gluten everything seem to right itself and I had several years of normalcy.

Occasionally, but more frequently in the past year, I am having a return of these symptoms. Usually I can blame cross contamination in a food in supplement and once that's avoided, I return to months of symptom free living. Current drs think i have chronic fatigue caused by infections, which now have been treated w antibiotics. I am having trouble finding reasons for my myoclonus, and I still stick to a very strict diet. 

My question: do any of you who have myoclonus as a symptom also experience a crash in energy, trouble walking/ thinking/ talking when it happens? And I am also wondering if there are folks here who see their condition as more than gluten intolerance or celiac, but also part of a broader range of illness or imbalance in the body? For instance, intersected w chronic fatigue/ adrenal fatigue? 

Im so weary of the lack of understanding w my doctors. My current one thinks adrenal issues are " fringe" and thinks my myoclonus is anxiety. He is only focused on infection. That functional medicine dr doesn't think gluten is the issue, even though I got great relief for years once I was off it, and I absolutely know what happens 24 hours after a glutening. I once tested myself w a one inch cube of cake. My reaction was so severe w facial paralysis and hours of myoclonus that it convinced me. 

Thanks for reading. I'm having a bad series of days after a dinner party. Not knowing if it was a gluten issue ( likely because I didn't personally make the food/ yet unlikely because two others at the party have celiac and I also quizzed everyone on the contents of their offering. )  Basically Im feeling scared that it isn't gluten ( more than just gluten) and I have some disease/ disorder that my drs don't understand. 


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,532
    • Most Online (within 30 mins)
      7,748

    jimploszay
    Newest Member
    jimploszay
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scatterbrain
      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
    • Jmartes71
      Yarrow Pom works really well with the skin issues I found out.I had to stop so my doterra because dealing with medical celiac circus. I had shingles in Feb 2023. Prayers for healing 
    • cristiana
      More great tips, and a good excuse to shop at M&S and also buy more iced buns!   I wish we had an ASDA near us, as the few times we've been to one their gluten-free pasta range seemed very reasonably priced compared to other shops.  Thanks so much, @Russ H.
    • Russ H
      I hope you are on the mend soon. About 1 in 5 people who contracted chicken pox as a child go on to develop shingles in later life - it is not uncommon. There are 5 known members of the herpes virus family including chicken pox that commonly infect humans, and they all cause lifelong infections. The exact cause of viral reactivation as in the case of shingles or cold sores is not well understood, but stress, sunburn and radiotherapy treatment are known triggers. Some of the herpes viruses are implicated in triggering autoimmune diseases: Epstein-Barr virus is suspected of triggering multiple sclerosis and lupus, and there is a case where it is suspected of triggering coeliac disease. As to whether coeliac disease can increase the likelihood of viral reactivation, there have been several cohort studies including a large one in Sweden suggesting that coeliac disease is associated with a moderate increase in the likelihood of developing shingles in people over the age of 50. US 2024 - Increased Risk of Herpes Zoster Infection in Patients with Celiac Disease 50 Years Old and Older Sweden 2018 - Increased risk of herpes zoster in patients with coeliac disease - nationwide cohort study
    • Russ H
      BFree bread is fortified with vitamins and minerals as is ASDA own-brand gluten-free bread. All the M&S bread seems to be fortified also.
×
×
  • 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.