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Muscle Issues?


k2626

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k2626 Explorer

Anyone with stabbing muscle pains and muscle twitching?


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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.


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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.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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