Jump to content

  • 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):

Possible Muscle Atrophy - Has Anyone Recovered From This?

DistantShores
 Share

Recommended Posts

DistantShores Rookie
DistantShores
Posted

I'm looking for some encouragement. In the last few months my health has taken a bit of a nosedive due to what I suspect may be a major gluten exposure along with a bout with COVID. Through all that I've been working and not exactly been the most active in the longest time. Recovery has been up and down, but through this process I've found alignment issues in my hips and legs. Most notably hip pain on my right. In addition, I'm spotting what may potentially be signs of muscle atrophy on my left feet and legs, but not sure whether to mention this to the doctors yet. I have an EMG scheduled next month. 

In the meantime, I'm looking for some encouragement. I was first diagnosed in 2019 and have lost and gained weight since then. I'm back in the process of losing weight that may be related to cleaning up my diet again, even though I haven't been physically active at all. Trying really hard not to get ahead of myself and assume worst case scenarios. My neurologist has not noted anything alarming. So I'm hopeful and also wondering if there is anything I can do to heal this (along with the diet). Currently seeing a chiropractor and massage therapist to work out the kinks and knots. 

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

Before I got my diagnosis, I had a chiropractor tell me that it appeared as if I had suddenly lost all muscle tone and she didn't know why.  I wonder if that is the sort of thing that you experienced?  I recall Aching which began with my feet and worked all of the way up the back of my legs and finally I couldn't bring my leg up to march position.  (I was in my 40's)  Although, I had been very flexible, I began to get stiff.  Fast forward to now I am back to my flexible self and have had opportunity to work on weight machines and am very strong.  There were many complications to figuring out the whole solution for me; It was worth it!  Chiropractic, nutrition, supplements, allergy discoveries have been huge for me.  I hope that you will find things huge for you!

The gluten free diet is a huge help and for people super-sensitive or with celiac, there is no choice to but to be very scrupulous with one's diet.  Celebrations, Potlucks, and restaurants must be carefully analyzed if engaged in at all.  I hope that you have family support.  I found local friends eventually that shared my struggles and it helps so much to have someone that "gets it" when life gets hard.

Sorry, to hear of the Covid.  I had Epstein-Barr virus and one can use nutrients and supplements to begin to go after the viruses that stay in your systems like that.  The sooner is the better.  Take care of yourself!

DistantShores Rookie
DistantShores
Posted
  • Author
59 minutes ago, 1desperateladysaved said:

Before I got my diagnosis, I had a chiropractor tell me that it appeared as if I had suddenly lost all muscle tone and she didn't know why.  I wonder if that is the sort of thing that you experienced?  I recall Aching which began with my feet and worked all of the way up the back of my legs and finally I couldn't bring my leg up to march position.  (I was in my 40's)  Although, I had been very flexible, I began to get stiff.  Fast forward to now I am back to my flexible self and have had opportunity to work on weight machines and am very strong.  There were many complications to figuring out the whole solution for me; It was worth it!  Chiropractic, nutrition, supplements, allergy discoveries have been huge for me.  I hope that you will find things huge for you!

The gluten free diet is a huge help and for people super-sensitive or with celiac, there is no choice to but to be very scrupulous with one's diet.  Celebrations, Potlucks, and restaurants must be carefully analyzed if engaged in at all.  I hope that you have family support.  I found local friends eventually that shared my struggles and it helps so much to have someone that "gets it" when life gets hard.

Sorry, to hear of the Covid.  I had Epstein-Barr virus and one can use nutrients and supplements to begin to go after the viruses that stay in your systems like that.  The sooner is the better.  Take care of yourself!

My chiropractor has yet to mention anything about muscle tone, however, he has noted weakness in my feet as well as located a lot of tender spots from head to toe. I do not doubt the loss of muscle tone due to a long time of inactivity on my part, which I've avoided due to pain. Yes, it has primarily been in my legs and feet as well. 

I'm very happy to hear about your recovery. I'm approaching a very similar journey with exploring new avenues for healing alongside the gluten-free diet. This last episode has severely humbled me as I adhered to the diet, but was still pretty laidback with eating out. Never again. Currently looking into the AIP diet and changing my lifestyle habits, as well as keeping my doctor in the loop. 

Thank you for sharing your story and encouragement. 

Scott Adams Grand Master
Scott Adams
Posted

One of the worst symptoms I had, which took many years to go away, was severe muscle knots in my neck and shoulders which caused me to have stiff necks often...really bad ones. Proper supplementation is essential to recovery, so be sure that you are taking a good, gluten-free multivitamin with minerals. Taking magnesium citrate, vitamin D, and extra B12 helped me finally overcome this.

Also, regular exercise is always a good thing, so consider a treadmill or stationary bike, just something you can do every day.

DistantShores Rookie
DistantShores
Posted
  • Author
On 2/1/2022 at 4:22 PM, Scott Adams said:

One of the worst symptoms I had, which took many years to go away, was severe muscle knots in my neck and shoulders which caused me to have stiff necks often...really bad ones. Proper supplementation is essential to recovery, so be sure that you are taking a good, gluten-free multivitamin with minerals. Taking magnesium citrate, vitamin D, and extra B12 helped me finally overcome this.

Also, regular exercise is always a good thing, so consider a treadmill or stationary bike, just something you can do every day.

Thank you for the suggestions Scott! I'm already taking a multivitamin but unsure if it is enough. I have also started a light exercise regime until I can build up some strength. 

Scott Adams Grand Master
Scott Adams
Posted

Consider the Benfotiamine version of thiamine, as it is one of the key B vitamins that many celiacs need, and this is a fat soluble version so it gets absorbed better.

Scott Adams Grand Master
Scott Adams
Posted

Take a look through this thread if you have time:

 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

In addition to a multivitamin, consider a B Complex vitamin and additional thiamine.  

Including nutrient dense foods like liver will help you get all those B vitamins and minerals.  

 

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
 Share
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 glucel's topic in Super Sensitive People
      17

      iron digestibility

      @glucel, There's a strong correlation between thiamine deficiency, hypoxia, and insomnia. Thiamine is needed to help red blood cells carry oxygen. In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks. Not a big thing, particularly because most likely it is "true" but not yet demonstrated.
    3. glucel
      - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks for the thoughtful comment. You are right that the study’s main conclusion was cautious: the researchers found that inherited antibody-gene variants significantly shape the naïve B-cell receptor repertoire, including usage of some gene segments involved in celiac-related antibody responses, but they did not find strong evidence that polymorphisms in...
    5. knitty kitty
      - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      I have osteoporosis and have crushed three vertebrae. I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health). I tried Fosomax, but it tore up my insides. I prefer the supplements. I feel better and my bones feel stronger. References...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,004
    • Most Online (within 30 mins)
      10,442
    Bothy
    Newest Member
    Bothy
    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)

  • Upcoming Events

  • Posts

    • knitty kitty
      iron digestibility

      By knitty kitty · Posted

      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      iron digestibility

      By glucel · Posted

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      By knitty kitty · Posted

      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      Coeliac And Cardio Vascular Disease

      By knitty kitty · Posted

      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...