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

Muscle Issues?


k2626

Recommended Posts

k2626 Explorer

Anyone with stabbing muscle pains and muscle twitching?


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



Celiac.com Sponsor (A8-M):



katifer Apprentice

Anyone with stabbing muscle pains and muscle twitching?

Yes! It happened to me for years! It was horrible. Then i went gluten, dairy free...i try to stay sugar free too. It never happens unless i have gluten or dairy. It did take a bit for my body to heal...4-6 months. 2 years later i cant believe i lived like that from age 11-27. Hope you heal quickly. Make sure you check medications, and things like dressing for salads etc. I never worried about shampoo etc.

captaincrab55 Collaborator

Anyone with stabbing muscle pains and muscle twitching?

Been there and also had muscle cramps...
gary'sgirl Explorer

Anyone with stabbing muscle pains and muscle twitching?

Yes, I get those too, but I haven't figured out what to do about them. I am seeing a neurologist right now to try and sort out those and some other neuro issues.

Sorry I can't be of more help, but I hope you get some good replies.

Korwyn Explorer

Yes. Open Original Shared Link and severe Open Original Shared Link as well as several other neurological and psychological issues (panic attacks, anxiety, night sweats, etc) Soy was the culprit. The night I finally put it all together I had some Glutino pretzels (which contain soy flour) about 8. I woke up at about 11 from a sound sleepto a full blown panic attack, tachycardia, and a hot flash (sweat pouring off me). Within another 30 seconds or so my left back went crazy. Every individual small muscle from the top of my shoulder to my hip began spasming independently of each other. It felt like 100 tiny xylophone players were playing on my back and they all had different music.

It has taken me nearly a year of being off soy for things to return to anything approaching normal since it took me another 3 months to figure out that many of the commercial non-dairy milks (Blue Diamond, etc) use soy lecithin, as do many bagged teas - even some just plain green teas. :angry:

nyctexangal Rookie

Just a though- look into B12 and Magnesium. Since being on the magnesium, for me, my muscle spasms and twitching have stopped- yay! Due to malabsporption in Celiacs, we don't absorb B-12 and Magnesium. If you try the magnesium- space it out through the day, so you don't get ummm...diarrhea. I take 400 mcg of liquid magnesium spread throughout the day. It has stopped my numbness, tingling, muscle spasms, and muscle twitches and pain.

nyctexangal Rookie

PS- Taking magnesium has stopped my stabbing muscle pain as well...google magnesium, Celiac, and symptoms- good stuff.


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



Celiac.com Sponsor (A8-M):



k2626 Explorer

Thank you all for this. I have had times where I have had hundreds of twitching all over, to just a few a day and more stabbing pains. My B12 is actually high because I take a good one, but have not checked for magnesium, is there a lab that can be drawn to look at that?

Korwyn Explorer

Any lab. My doctor routinely orders my magnesium levels when I get my blood work every six months. Ask for a CBC, with D, B, Iron, and Magnesium checkups. If you are regularly cold as well when everyone around you is not, ask for your vitamin K levels to be checked as well as T3 and T4 Thryoid. Make sure you get a copy of the lab work yourself because 'normal' might mean on a reference range of 0.4 to 1.9 a .4 would be 'normal' but a .39 would be 'low'. So you need to know WHERE you are in that level. I didn't find out about possible anemia until I started getting my own copies of my lab work and seeing that I was consistently only 1 point inside the normal range. So according to the lab I was fine. But a 39-41 year old male shouldn't be barely consistently at the low end of that scale.

  • 1 year later...
sylviaann Apprentice

Yes. Open Original Shared Link and severe Open Original Shared Link as well as several other neurological and psychological issues (panic attacks, anxiety, night sweats, etc) Soy was the culprit. The night I finally put it all together I had some Glutino pretzels (which contain soy flour) about 8. I woke up at about 11 from a sound sleepto a full blown panic attack, tachycardia, and a hot flash (sweat pouring off me). Within another 30 seconds or so my left back went crazy. Every individual small muscle from the top of my shoulder to my hip began spasming independently of each other. It felt like 100 tiny xylophone players were playing on my back and they all had different music.

It has taken me nearly a year of being off soy for things to return to anything approaching normal since it took me another 3 months to figure out that many of the commercial non-dairy milks (Blue Diamond, etc) use soy lecithin, as do many bagged teas - even some just plain green teas. :angry:

These are classic symptoms of the initial onset of Lyme Disease. I had several similar symptoms early in the course of my illness. I thought I was going to die at the time. I went gluten free two years later but now that I have my real diagnosis, I can look back and clearly see how incredibly ill I was from this bacteria! Lyme patients cannot tolerate gluten, amomg many other foods. Pain, Neurological problems, insomnia, and fatigue are the most common symptoms. The conventiona Lyme tests are highly inaccurate, which is why thousands of people are walking around suffering with undiagnosed Lyme. I changed my entire lifestyle (foods, supplements, avoiding chemicals) to accomodate Lyme, without knowing I had it all along. It will not go away without proper treatment and left untreated for many years can result in neurological diseases such as ALS, MS, Parkinson's, etc. The best test to ask a Lyme literate doc to order is the Igenex Lyme panel.

Archived

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

  • 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. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      how much gluten do I need to eat before blood tests?

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748

    MauraBue
    Newest Member
    MauraBue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
×
×
  • 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.