Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 atrophy in legs


pasqualeb

Recommended Posts

pasqualeb Apprentice

I was diagnosed in 2002, my daughter also in the same year.within the last 2years I have noticed my legs were getting weaker, specifically in my thighs. They are now in  atrophy☹️ been to several doctors with really no diagnosis yet. Wondering if it might be related to Celiac. Has anyone else had a similar experience? Thank you, Pasquale 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Yes, I've experienced this!  

I squatted down to get something off the bottom shelf in the grocery store and could not get back up!  

The Squat test is used as a diagnostic test for Thiamine deficiency.  If you cannot rise unaided to standing position from a squat, you probably have thiamine deficiency.

Malabsorption of essential nutrients caused by Celiac Disease can lead to vitamin and mineral deficiencies.  Gluten free processed foods are not required to be enriched with vitamins like gluten containing products.  This can lead to deficiencies in essential vitamins like Thiamine and the other B vitamins.

Thiamine is Vitamin B 1.  Thiamine cannot be stored inside the body for longer than three weeks.  Deficiency symptoms can occur in as little as three days.  You can have suboptimal levels for a long time.  

My doctors were clueless, too.  Doctors are not well educated in nutrition and deficiency symptoms, so I relied on my education in nutrition and microbiology.  I took high dose Thiamine (in the form Benfotiamine, available over-the-counter) to correct my deficiency.  Thiamine is safe and nontoxic even in high doses.  I had improvement within an hour.  

Since blood tests are not accurate measurements of Thiamine deficiency, the best way to test for Thiamine deficiency is to take 500 mg/day for several days and look for improvement of symptoms.  My symptoms improved very quickly.

Thiamine works best with Magnesium, and a B Complex containing all eight essential B vitamins.  

Do talk to your doctor and nutritionist about supplementing with essential vitamins and minerals to boost absorption.

Keep us posted on your progress!

References:

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

Link to comment
Share on other sites
trents Grand Master

May we ask your age? Do you have problems with your knee joints? It is common for men as they age to lose muscle mass, especially in the legs and buttocks as testosterone/DHT levels drop. And there is a higher concentration of androgen receptors in the upper body to begin with. 

I am 73 and I have also noticed that as knee joint pain has begun to set in I tend to avoid squatting type movements more and more such that my quads and glutes are not getting exercised as much in normal daily activity. 

Link to comment
Share on other sites
pasqualeb Apprentice
4 hours ago, pasqualeb said:

I was diagnosed in 2002, my daughter also in the same year.within the last 2years I have noticed my legs were getting weaker, specifically in my thighs. They are now in  atrophy☹️ been to several doctors with really no diagnosis yet. Wondering if it might be related to Celiac. Has anyone else had a similar experience? Thank you, Pasquale 

 

1 hour ago, knitty kitty said:

Yes, I've experienced this!  

I squatted down to get something off the bottom shelf in the grocery store and could not get back up!  

The Squat test is used as a diagnostic test for Thiamine deficiency.  If you cannot rise unaided to standing position from a squat, you probably have thiamine deficiency.

Malabsorption of essential nutrients caused by Celiac Disease can lead to vitamin and mineral deficiencies.  Gluten free processed foods are not required to be enriched with vitamins like gluten containing products.  This can lead to deficiencies in essential vitamins like Thiamine and the other B vitamins.

Thiamine is Vitamin B 1.  Thiamine cannot be stored inside the body for longer than three weeks.  Deficiency symptoms can occur in as little as three days.  You can have suboptimal levels for a long time.  

My doctors were clueless, too.  Doctors are not well educated in nutrition and deficiency symptoms, so I relied on my education in nutrition and microbiology.  I took high dose Thiamine (in the form Benfotiamine, available over-the-counter) to correct my deficiency.  Thiamine is safe and nontoxic even in high doses.  I had improvement within an hour.  

Since blood tests are not accurate measurements of Thiamine deficiency, the best way to test for Thiamine deficiency is to take 500 mg/day for several days and look for improvement of symptoms.  My symptoms improved very quickly.

Thiamine works best with Magnesium, and a B Complex containing all eight essential B vitamins.  

Do talk to your doctor and nutritionist about supplementing with essential vitamins and minerals to boost absorption.

Keep us posted on your progress!

References:

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

Thank you so much for that information, I never thought of that as a possibility but i will look into further .  Thanks again, Pasquale 

 

Link to comment
Share on other sites
pasqualeb Apprentice
4 hours ago, pasqualeb said:

I was diagnosed in 2002, my daughter also in the same year.within the last 2years I have noticed my legs were getting weaker, specifically in my thighs. They are now in  atrophy☹️ been to several doctors with really no diagnosis yet. Wondering if it might be related to Celiac. Has anyone else had a similar experience? Thank you, Pasquale 

I am 80 years old and until recently very active,tennis, golf, gardening and walking several miles 3-4 times per week. I understand age related muscle loss but I believe this is something else, I need to hold on to a railing going both up and down the stairs or one of my legs will give out, causing less than good results for me…

Link to comment
Share on other sites
Yes Newbie
6 hours ago, pasqualeb said:

I was diagnosed in 2002, my daughter also in the same year.within the last 2years I have noticed my legs were getting weaker, specifically in my thighs. They are now in  atrophy☹️ been to several doctors with really no diagnosis yet. Wondering if it might be related to Celiac. Has anyone else had a similar experience? Thank you, Pasquale 

I’m 22, muscle atrophied over 2 years in my thigh. Wasn’t diagnosed until a year ago after it was pretty bad. I’m not sure yet if there’s a second condition, going to neurologist next. Im thinking it may be necessary to (slowly and carefully) push through pain for physical therapy if the pain doesn’t stop. 

Link to comment
Share on other sites
pasqualeb Apprentice
2 hours ago, Yes said:

I’m 22, muscle atrophied over 2 years in my thigh. Wasn’t diagnosed until a year ago after it was pretty bad. I’m not sure yet if there’s a second condition, going to neurologist next. Im thinking it may be necessary to (slowly and carefully) push through pain for physical therapy if the pain doesn’t stop. 

So sorry to hear that, the strange thing with my legs is I have no pain at all but stairs are a big problem. Walking so far has been ok. I just had a biopsy and waiting for results, but the thinking is I might have polymytisis which causes  muscle atrophy.  Good luck to you . Pasquale 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@pasqualeb,

You may want to request being checked for Vitamin D, Vitamin C,  and Thiamine deficiencies.  

We need extra Thiamine when we are active, especially in hot weather, when we're physically sick, and when we're under emotional stress.  

Vitamin D deficiency is very common in Celiac Disease.  Malabsorption of the eight essential B vitamins and Vitamin C is common with increased age.  

Interesting Reading:

Tropical pyomyositis, a thiamine-deficiency disease

https://pubmed.ncbi.nlm.nih.gov/7219252/

 

Decreased Serum 25-(OH)-D Level Associated With Muscle Enzyme and Myositis Specific Autoantibodies in Patients With Idiopathic Inflammatory Myopathy

https://pmc.ncbi.nlm.nih.gov/articles/PMC8082096/

Link to comment
Share on other sites
pasqualeb Apprentice

Will do, excellent information, thank you Pasquale 

Link to comment
Share on other sites
pasqualeb Apprentice

Got it…. 

Link to comment
Share on other sites

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,631
    • Most Online (within 30 mins)
      7,748

    Patty24
    Newest Member
    Patty24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AnnaNZ
      Hi 'ConfusedCelic'. I was very interested to read your post and the letter from Prof. Federico Biagi you linked to. Blown away actually! I am DQ7.5. I tested sero-negative for Celiac 10 days AFTER giving up gluten (August 2023) when I knew very little about this topic. I now know a whole lot. I am not game to do a gluten challenge. My body is still 'recovering'. I did my tests through my GP here in New Zealand although here the genetic result is termed differently which confused me for a while: DQA1*05 and DQB1*03:01 (DQA1*05) = DEMONSTRATED Relative risk for coeliac disease - VERY LOW It seems to me that statistics can give you slanted views. Perhaps what this really means is, there are a low percentage of people generally with this gene combination rather than the genes giving a low risk of developing celiac disease. The other thing that I found strange was, the letter and the work it referred to, talk about 'only having DQA1*05, not also having DQB1*02:01'. It doesn't seem surprising to me that there could be another combination of genes capable of causing celiac disease. On a local facebook chat this month, 2 people stated that they had been diagnosed celiac 30 years ago via biopsy when they were 2 and 3 respectively, and they have now 'learned' via private testing companies that they 'aren't celiac after all'. Presumably, they were only tested for the 'common' types. I am astonished at how much disinformation goes on. I have pointed them to the letter from Prof. Federico Biagi. Did you ever manage to complete the other genetic tests?
    • pasqualeb
    • pasqualeb
      Will do, excellent information, thank you Pasquale 
    • Josh8282
      Does anyone know of egg nog that is certified gluten free and is safe to drink 
    • MCS
      I will have to try them. Looks like same sugar in both regular and gluten free. Fingers crossed they taste the same. Thanks!  
×
×
  • Create New...