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

Twitching In Fingers - Neuro Or Ortho?


pricklypear1971

Recommended Posts

pricklypear1971 Community Regular

Ok, question.

One of the symptoms I attributed to gluten was the "shaky left hand". It improved off gluten. Worsens when I feel bad - assume gluten exposure or during DH breakout.

A week or do ago I started noticing it again, maybe it started when my blood sugar was off. I guess I noticed it was still around when blood sugar got stable.

Anyway, I don't notice the shaking as much now - just when I try to do the Spock move (seperate fingers in groups). Within the last few days I've noticed my right pointer finger and thumb sometimes contract....what the left hand did initially (year+ ago).

So, at this point I can't ignore it anymore and assume it was gluten. So, where should I go first - neuro or ortho???


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

For me that would mean that my magnesium and/or potassium levels are low. I would consider it a neuro issue.

pricklypear1971 Community Regular

They aren't. Been tested. Well, magnesium has been tested and I take supplaments.

It's more than just twitching...my left thumb now doesn't bend down as much as my right. It is better gluten-free, but why is it starting in the right?

frieze Community Regular

neuro/electrolytes/carpal tunnel?

AVR1962 Collaborator

They aren't. Been tested. Well, magnesium has been tested and I take supplaments.

It's more than just twitching...my left thumb now doesn't bend down as much as my right. It is better gluten-free, but why is it starting in the right?

This is a good question, one I have asked myself. For me, my issues are on my left. Do you ahve any cramping in the fingers/hands or sharp pains in the joints? My hands will cramp up sometimes and I find burpless Omega 3,6,9 helps. I was getting terrible sharps pains in the joint where I had an old fracture and started taking BioSil drops which helped that.

Marilyn R Community Regular

I would suggest neuro too. I don't think ortho would be productive. Have you seen a rheumutalogist?

pricklypear1971 Community Regular

Sigh.

I saw a Rheumy years ago when I was dx'ed with Hashis. She said as long as I felt good, not to go back.

I am not currently taking Omegas...I could add and see. I think potassium was also tested and was fine...

I noticed the shaking was worse Sunday (after improving for days) - the day after I ate out. Started thinking, in addition to stress (not talking about it but it's been a decent amount ) I've been eating that freaking Halloween candy....which opens up gluten issues. Also, I've noticed hands shaking more when my blood sugar is off....

So, is this still related to gluten and blood sugar????

SOB, this makes me angry. I don't usually get stomach gluten symptoms (I think it has to be enough to make a DH spot start to swell before I get a stomach issue).

Ive also noticed my lower arms are very sensitive after I spend time on the computer (leaning on the desk).

I intend to go to a neuro when I find one....but want to go with a good diary of how/when/how. Also, my hands sometimes ache and cramp (new) and I think it's when it's cold....


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Oh boy, Halloween candy! So many things in candy you could be having a reaction to, unfortunately. I've pretty much had to eliminate it. It could be the sugar that'd causing the shaking. Could be high fructose or lactose in the candy that's upsetting your stomach. The hands really sound like they might benefit from either potassium and/or Omgea. The forearm issue could be due to your hand position typing or doing something where there is pressure against the wrist. Try streching it....take your hands in a prayer position with hands up and then while still holding hands flat against one another point the hands to the chest. The take your arms straight out, make s fist and release several times, then bend the hands down while arms are straight. I teach piano....these are techniques I use. Also, try to keep the wrist from being put in a crimped postions....too much pressure on the wrist can cause issues into your arms.

Marilyn R Community Regular

Hi prickly,

If you have neuro reactions, it could be due to eating out, or I noticed the tag line above listed gar & xanthum gums along with carrageen as food sensitivities. I bet you had a good dose of those with the candy.

I had a nasty reaction lasting two days due to xanthum gum in a popular bisquit mix.

Here's what happened with my neuro visits. Nerve Conduction Test. What is a nerve conduction velocity test?

"A nerve conduction velocity test (NCV) is an electrical test that is used to determine the adequacy of the conduction of the nerve impulse as it courses down a nerve. This test is used to detect signs of nerve injury.

In this test, the nerve is electrically stimulated, and the electrical impulse 'down stream' from the stimulus is measured. This is usually done with surface patch electrodes (they are similar to those used for an electrocardiogram) that are placed on the skin over the nerve at various locations. One electrode stimulates the nerve with a very mild electrical impulse. The resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to calculate the speed of impulse transmission (nerve conduction velocity). A decreased speed of transmission indicates nerve disease. A nerve conduction velocity test is often done at the same time as an electromyogram (EMG) in order to exclude or detect muscle conditions."

Oops, I meant to copy the link, I just pasted the context. I had the EMG too. They were really painful tests.

In my follow up appointment, the neuro told me I had polyneuropathy. Always knew that, but had been told by dr's that I couldn't say that I had it until I'd been diagnosed. Then she wanted to do a nerve biopsy and I said no after researching it. She prescriped Lyrica, which I told her I didn't want because I'd read about the side affects. She prescribed it anyway and I didn't fill the rx. My neuropathy is at a 2 now vs, 8 before I went gluten-free. I have permanent nerve damage. I went to the neuro based on the recommendation from the rheumy.

I usually take anywhere from a few days to a full week to recover from gluten CC. I also have food intolerances to gar and xanthum gum. I had two gluten-free bisquits made with Xanthum gum Sunday, and even though I could show up to work, it was pretty bad. I had a rough time going down a flight of steps, and it was hard putting my mascara on.

She tested me for Lime's Disease too, even though I told her I'd never found a tick on my body and don't live in a particulary ticky area.

She wants to see me back in six months, I suggested 12, she said 9. I think I'll cancel.

She did say that exercise helps everything. I mean to be helpful by giving you this info, not a bummer. Since you have DH I'm pretty supposing you're super sensitive too.

Good luck, hope you feel better soon.

AVR1962 Collaborator

Hi Marilyn, it was me with the signature (instead of Prickly) that has the issues with guar gum, carrageenan, high fructose and xanthan gum. That was actually why I targetted the candy, they all mess me up for about 3 days....vertigo, digestive issues.

Thanks for sharing about the nerve damage and the tests you have undergone. Sounds like you are doing better. Have you found the longer you are away from gluten, there is any change in your nuero issues? If I back off my supplements I'm a mess again so doc wants me to keep doing what I have been, B12 and D being my hardest to keep up.

I recently bought 2 books, one about what to eat to help neuro issues, and the other explaining what happens in the body with nerve damage. I have not received them. Have been reading a little on the Internet and have been purposely putting more B12 and vit D foods in my diet which have me feeling alot better. As long as my supplementing is working for me and doing my body no harm I will continue, and maybe one day I will get to the point where my body can go without the extras.

Marilyn R Community Regular

Hi AVR,

Yes, the neuro issues have subsided, they just took a long time to do so and I have to be really careful about what I eat.

In my opinion, those two tests were a total waste of time. They didn't shed a light on anything and were totally painful.

Last weekend I wanted to try a gluten-free bisquit mix with xanthum gum. I felt like a drunk driver the next day and had to go to work. Taking a flight of stairs (down, couldn't do up) was scary.

I like the D-3 vitamin in drop formula if you can get it in Germany. So far my B vitamin levels have been good. I have osteopenia though, and have to take Calcium. And I like to take glucosomine.

I'm going to do some exercises before turning in tonight.)

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.