Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Question? Neuro Symptoms (Twitching + peripheral neuropathy)


Z4CH

Recommended Posts

Z4CH Rookie

Sorry, I think I posted this in the wrong place a minute ago... I think I'm in the right forum now.

 

Hey everyone, 

New here. Always been a bread eater. About a year ago, I started developing terrible joint pain. Had to stop going to the gym (had been body building for 5+ years). I thought maybe giving my body a break would be the fix, but then I started getting terrible twitching that began in my quads and spread to all four limbs, stomach, face, inner ear (didn't know that was possible lol). Started freaking out thinking I had ALS and doctor google was helping. Anyway, then one day I woke up with terrible pain and weakness in my left arm. Went to spinal specialist and he said I had peripheral neuropathy (he noted weakness in arm). I was put on a heavy does of gabapentin (1800 mg per day) which helped with pain but did not resolve anything (and it made my work productivity go way down for 6 mo). anyway long story short, got two EMGs, saw too many doctors and was sent home the doctors saying I'm totally fine... ? They even sent me for a neck MRI... nothing... 

 

Finally, found some obscure case study of some guy who was celiac and had twitching/peripheral neuropathy. So I thought, "I'll try the diet thing." After a month gluten free, my arm pain completely resolved and my twitching reduced slightly. My full strength is almost completely back in my left arm and my joint pain has been reduced substantially. Back in the gym too :)

 

So 3 questions: 

 

1. Anyone else gets twitching/fasciculations related to celiac? 

 

2. Any recommend resources for adult onset celiac disease? 

 

3. This is probably a dumb question, but does this whole thing sound like celiac at all? I've been freaking out for year about all these symptoms and kinda just want to know what's going on and if anyone else has a similar story. 

 

Anyway, sorry for the long post! Thanks in advance for your input! 

 

Edit: Maybe worth mentioning. I'm 24. 

Also, Get terrible gut reactions literally every time I eat out. No problems if I watch diet at home and make sure there's no gluten in my meal. 

Also, slightly elevated liver enzymes. 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

For some people with gluten sensitivity or celiac disease it manifests primarily as a nerve disorder (see the link below for many scientific articles on this). By going gluten-free already, it will now be difficult for you to get screened for either (you need to be eating gluten daily for at least 6-8 weeks before any screening can be done). 

Be sure to discuss these symptoms with your doctor, as it could be something else, but certainly if the gluten-free diet has helped relieve symptoms the cause could be gluten sensitivity, and the gluten-free diet won't hurt you, just be sure to get enough fiber and overall good nutrition.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

You've found a great resource here, certainly there are others out there, but you could likely spend years on this site going through its many resources.

Awol cast iron stomach Experienced

Yes I get neuropathy and it will return if I am cc. I find I must ensure I get adequate b vitamins and on bad neuropathy day I take a b vitamin and sublingual b12

 

Good luck

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,112
    • Most Online (within 30 mins)
      7,748

    Deedy
    Newest Member
    Deedy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zuma888
      Hello, I was diagnosed with Hashimoto's thyroiditis about 3 years ago. At that time I quit gluten and it really helped my symptoms. I hadn't known that I should've tested for celiac before doing so.  Up till recently, gluten would cause my symptoms to flare up, although I never noticed anything with cross contamination, so I wasn't strict about that. But recently, I noticed I could get away with more gluten, and so I decided to do a gluten challenge to see if I had celiac and if I had to be strict. Note that my thyroid antibodies had been decreasing steadily up to this point. My anti-TPO had reached 50 IU/ml from 250 IU/ml (reference range 0-5.6) when I had first been diagnosed. After just a week of the gluten challenge, I measured my thyroid antibodies and they were at 799 IU/ml! I felt fine, but a few days after I started to feel the symptoms. Extreme brain fog, insomnia, diarheaa, fatigue, sleepiness yet cannot sleep, stomachache after eating gluten, nausea, swollen throat (probably due to my thyroid), burping, and gas. I cannot function properly. I'm also worried that I'm killing my thyroid. Should I just quit the challenge? It's been almost two weeks, but the first week I wasn't tracking well, so that's why I didn't want to count it. I can't eat gluten anyway because of my thyroid, but I wanted the diagnosis to know if I should be strict about cross contamination or not.  
    • Zuma888
      You really saved me as I was on day 4 of 3 g per day for 6 weeks. Thank you very much!
    • trents
      Two weeks is the minimum according to the guideline. I would go for four weeks if you can endure it, just to make sure.
    • Zuma888
      Thank you so much! So I can do 10 g worth of gluten in the form of gluten powder per day for two weeks and that should be enough?
    • trents
      It applies to both blood tests and biopsies. Guidelines for the gluten challenge have been revised for the very issue your question raises. It was felt by medical professionals that the longer term but less intense consumption of gluten approach was not proving to be reliable for testing purposes and was resulting in too many false negatives. But do keep in mind that the gluten consumption doesn't have to be in the form of bread slices. It can come in any form: pasta, cake, wraps, etc. Another approach would be to buy gluten powder at a health food store and mix it in a shake. The idea is to get at least 10g of gluten daily, whatever form it comes in.
×
×
  • Create New...