Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):

  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.


    • Sign In
    • Sign Up

Myoclonus with extreme sudden fatigue

Rate this topic

Recommended Posts

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. 

Share this post

Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now