Muscle atrophy in legs

[pasqualeb]

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 

[knitty kitty]

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/

[trents]

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. 

[pasqualeb]

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 

 

[pasqualeb]

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…

[Yes]

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. 

[pasqualeb]

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 

[knitty kitty]

@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/

[pasqualeb]

Will do, excellent information, thank you Pasquale 

[pasqualeb]

Got it…. 

[pasqualeb]

Thank you for that information, I have learned however I have a condition called Polymyositis, treatable with steroids and then some PT. Pasquale 

On 10/30/2024 at 6:15 PM, pasqualeb said:

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 

 

[Dana W]

I was undiagnosed for quite a few years. I now have neuropathy in my hands and feet. Be watchful of something like this and definitely see a neurologist if having symptoms like numbness in your extremities. 

[pasqualeb]

Sorry to hear about your situation , I have been diagnosed with a condition known as Polymyositis, treatable with steroids and PT

thanks again, good luck

pasquale

[pasqualeb]

Yes, thank you and I am seeing a neurologist , getting a script for a steroid followed by some 

PT when inflammation goes down. Good luck to  you

pasquale

[Wheatwacked]

Polymyositis is a rare autoimmune disease that makes your immune system attack your muscles.

Any autoimmune disease is associated with low vitamin D.  

On 10/30/2024 at 9:03 AM, pasqualeb said:

I have noticed my legs were getting weaker, specifically in my thighs. They are now in  atrophy

Even as a kid I had weak legs.  Now I feel the burn just walking to the mailbox.

A case-control study found that patients with polymyositis (PM) had higher lactate levels at rest and after exercise, indicating impaired muscle oxidative efficiency. The study also found that an aerobic training program reduced lactate levels and improved muscle performance.

[Soleihey]

On 10/30/2024 at 2:26 PM, 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. 

How are you now?

[pasqualeb]

Might want to see a rheumatologist also, as if this is an autoimmune disease they might be better equipped to to handle and treat. I was finally diagnosed after a biopsy on one of my quads. Condition known as IBM or inclusion body myositis . Good luck 

Good luck 

[Wheatwacked]

On 10/30/2024 at 9:03 AM, pasqualeb said:

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.

Thanks for bringing this up again.    That week my doctor sent me for a Carotid Artery scan that came back 90% blockage on both sides.  Short story I had a stent put in right carotid artery. Just now getting back to normal from the Anesthesia. Surgery healed well, but it took until the next day to wake up from the anesthesia. A combination of time and B6.  Anesthesia depletes B6, slowing digestion and peristalsis and is also responsible for my freezing cold toes.

These are my symptoms.  As a kid I had weak legs.  But now, 10 minute walk and I can barely move my legs.

 I blamed it on the sedentary lifesyle from the general pain, and atrophy was to be expected. And with predisone for the pain and Gluten free I expected recovery.

With the carotid artery blockage it got me to thinking it is blockage in the Ileac or Celiac arteries.  I might pursue that but the diet is the answer. I would rather not do more surgery if avoidable.

Most important.  Every symptom on this list can be the result of a vitamin or mineral deficiency. Particularly B1 and B6, Iodine and choline and vitamin D. Celiac Disease is a disease of malnutrition by malabsorption or even dietary choices.  In the US the commercial bakeries stopped using iodine as a dough conditioner.  From 1970 to 1984 the average american intake of iodine went down 50%.

CoQ10 may be beneficial.  It is given to people taking statins to negate the muscle myopathy caused by statins.

Inclusion Body Myositis:

Unknown Cause:
Not Inherited:
No Cure:

1. Progressive Muscle Weakness:
2. Asymmetrical Weakness:
3. Distal Muscle Involvement:
4. Swallowing Difficulties (Dysphagia):
5. Muscle Cramps and Pain: