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 Weakness And Fibro Symptoms

Guest SusieQ

By Guest SusieQ
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest SusieQ
Guest SusieQ
Posted

I've been following the gluten free diet for about three and 1/2 months now.

I feel less fibromyalgia pain. The D has stopped. No more gas. Appetite has normalized. I'm finally able to lose weight and I'm excited about that.

My present concern though is neurological. I was given a dx of fibromyalgia 10 years ago. Characterized by fatigue, pain in tender points, and stiffness.

The pain is receding. I have a lot less pain. The fatigue is less, although I never really feel rested....ever.

I'd complained to docs about feeling weakness in my legs, a lack of strength. They had dismissed that as being part of the fibromyalgia and from my weighing too much.

From the research I've done, it sounds like the weakness and lack of strength could be due to the gluten intolerance. That it can actually cause neuromuscular problems. What my question is, has anyone here had similar symptoms, and if so, have these symptoms reversed for you? How long does it take for them to reverse? How much might these symptoms improve?

Also, when I sit for any length of time and then try to get up, I have terrible stiffness and difficulty walking.

Might this resolve over time or am I stuck with it. I can't walk for any length of time which is really making it difficult to get around. Ligaments in the back of my leg also feel like they are trying to freeze up.

Would love to hear from anyone that is dealing with these symptoms or has had them.

Really would appreciate any comments or thoughts on this.

Thanks,

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

well, I've been gluten-free for three years now, and unfortunately my fibro symptoms haven't completely gone away... They are significantly better than before my dx, but still very sore in the tender spots and widespread muscle fatigue and pain... I take Tramadol daily so that I can cope with the pain. I think I may have other food intolerances like dairy and soy, I've cut out the soy in my diet but I'm not willing to give up dairy (yet)... I may get desparate enough and try to go without dairy, but for now, not willing to do that! One thing that really helps is my tens unit... I got it from my chiropractor, and I can put the electrodes on the areas that are the most tender and it does give me some relief. I think it interrupts the pain signal from the brain at least temporarily.

Ursa Major Collaborator
Ursa Major
Posted

Susie (love that name, it's my youngest daughter's), have you been tested for ferretin (iron) levels and levels of vitamin D, K, potassium, magnesium and calcium? A deficiency in any of those (more likely a combination) could be causing your weakness. It happened to me when I was anemic, my legs were so weak that many days I couldn't stand up, and had to stay in bed! Have your levels tested, its important.

I've started massage therapy, with a massage therapist who knows how to release those tender points, now that the cause of the fibromyalgia (food intolerances) is gone. My pain is so much less that I don't need pain killers any more (or rarely, anyway). But I wasn't really able to touch certain spots on my legs, shoulders or lower back especially, as they were too sore.

So, last Thursday I went to have my first massage ever. She said that she had rarely seen such knots in muscles, and tense muscles, but that she will be able to get rid of these problems, it just takes a couple of visits (maybe three). She was very gentle (still, it really hurt), but what she did already helped (and we started out with only half an hour). She also gave me some stretching exercises to do, because the muscles in my calves need to be stretched.

I am very hopeful that with the massage, chiropractic, diet and exercise I will improve a lot (maybe even get totally better? But that is probably too much to hope for :mellow: ).

ravenwoodglass Mentor
ravenwoodglass
Posted
I've been following the gluten free diet for about three and 1/2 months now.

I feel less fibromyalgia pain. The D has stopped. No more gas. Appetite has normalized. I'm finally able to lose weight and I'm excited about that.

My present concern though is neurological. I was given a dx of fibromyalgia 10 years ago. Characterized by fatigue, pain in tender points, and stiffness.

The pain is receding. I have a lot less pain. The fatigue is less, although I never really feel rested....ever.

I'd complained to docs about feeling weakness in my legs, a lack of strength. They had dismissed that as being part of the fibromyalgia and from my weighing too much.

From the research I've done, it sounds like the weakness and lack of strength could be due to the gluten intolerance. That it can actually cause neuromuscular problems. What my question is, has anyone here had similar symptoms, and if so, have these symptoms reversed for you? How long does it take for them to reverse? How much might these symptoms improve?

Also, when I sit for any length of time and then try to get up, I have terrible stiffness and difficulty walking.

Might this resolve over time or am I stuck with it. I can't walk for any length of time which is really making it difficult to get around. Ligaments in the back of my leg also feel like they are trying to freeze up.

Would love to hear from anyone that is dealing with these symptoms or has had them.

Really would appreciate any comments or thoughts on this.

Thanks,

I had fibro for many, many years. It took about 6 months for things to mostly resolve. It is however the first symptom that comes back when I get glutened. I also noted after many flares this year that the nightshade family would cause similar discomfort but without the brain fog and severe D that I get with gluten. Sublingual B 12 seems to help a bit.

barbara3675 Rookie
barbara3675
Posted

Really do have to reinforce that fibro and the gluten issue do go hand-in-hand. I think that is what tipped it for my DDIL when she suggested that I get tested to see if possibly I should start eating gluten-free. I am nearly 61, have to work pretty much full time, sometimes more and I take lots of medicine. I take Topomax and Verapamil to ward off migraines and Mobic for the fibro. I sure can tell if I miss the Mobic---it is an anti-inflammitory, but not of the classification like the ones that are being taken off the market. In addition I take a lot of magnesium with malic acid which helps a lot with the fibro. The fellow that runs my health food store has celiac disease but is also brilliantly learned. He suggested the magnesium for the fibro. I take a good one and it is expensive. Good thing I can work so I can pay for all this medicine!!!!!!!! Wonder if I could take it easy, if maybe I wouldn't have to take so much????? There are times when I hurt more than others, but I also think it is important to keep moving with fibro, although there is a fine line there...you can overdo it too. People that don't have fibro, just don't get it. It is like having the achy flu sympton, just sometimes worse than others. I think we get used to it. Barbara

jenvan Collaborator
jenvan
Posted

Susie--

Wish I had an easy answer for you!! My FM developed about 2-3 years ago... Started with extreme neck/shoulder/back pain...almost like I had had some sort of injury. Over the following months the pain seemed to dissipate from my neck and shoulders and end up being all over pain. I definitely have the points...I hurt all over, knots and fascial adhesions..but when I hit or poke one of those points--Ouch!! Anywho...I have been gluten-free for 14 mos or so..and unfortunately my FM has not really improved. I thank God I don't have it as severely as I could...but it can be very discouraging. I am still exploring other causes for it...something in conjunction with the celiac disease that might be causing it. I did physical therapy, muscle stripping (OUCH OUCH!) and acupuncture...all to no avail. I am trying to take mag/malic acid again...as that is one of the better "treatments" around for FM. I think another good one is stretching. I also feel like my muscles are always tight--almost a "shrinking" feeling... I am just starting to get into Pilates--lots of stretching and lengthening of muscles. I hope that will be a good help for me too. Other than that, I use my heating pads and epsom salt baths a lot :) Be hopeful--I'd say since you are already noticing improvement--you may be pain free someday! Just be sure to be vigilantly gluten-free. You may be like some here--getting gluten will bring back the pain and symptoms for a period of time, like it you have gluten on accident...

ebrbetty Rising Star
ebrbetty
Posted

my FM and CFS seem to be worse :blink:

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
my FM and CFS seem to be worse :blink:

Betty, check out my links on lectins and salicylates (in my signature), that's what's causing most of my fibro symptoms (gluten is a lectin, but not the only one by far).

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.