Muscle Twitching

[CeliacChica]

Hello,

I am 33 years old and was diagnosed with celiacs 11 months ago. I did have gastro symptoms that took 3+ months to resolve with gluten-free diet. However, the most concerning symptoms of numbness/tingling in my upper back and muscle twitching persist. The muscle twitching has worsened. It started in my right leg then spread to left leg and both arms and torso. My neck does click with the side-bending motion, too.  The twitching occurs frequently every minute at times. 
I was exposed to gluten 8 weeks ago but the twitching has persisted and likely preceded the exposure. I’ve developed a strong anxiety over a possible severe neurological disease. The neurologist ruled out MS based on symptoms of tingling and MRI of brain last year but that was before the twitching. My GI doc said twitching was not associated with celiacs. Has anyone else experienced similar symptoms? Please share! It would sure help the anxiety.  
 

*There was a forum on muscle twitching that was archived in 2009 and curious how those individuals faired, as well. 

[trents]

Welcome to the forum, CeliacChica!

Are you on any vitamin and minerals supplements to speed up recovery from the neurological damage often seen in celiac suffers those with NCGS (Non Celiac Gluten Sensitivity) as well? 

Long term undiagnosed/untreated (noncompliant with the gluten free diet) Celiac disease invariably results in vitamin and mineral deficiencies because of poor nutrient absorption in the damaged villous lining of the small bowel. A gluten free diet can extend that because gluten free flours are not fortified with vitamins and minerals as is wheat flour since it is mandated by the FDA. Of particular concern would be the B-vitamin group and D3.

I should also add that a gluten free diet often corrects the toxic neurological effects of gluten but sometimes the damage is not totally corrected.

I would not rule out a separate neurological disease as autoimmune diseases tend to cluster. Once you develop one you are more likely to develop others than is the general population.

Edited November 2, 2023 by trents

[CeliacChica]

2 hours ago, trents said:

Welcome to the forum, CeliacChica!

Are you on any vitamin and minerals supplements to speed up recovery from the neurological damage often seen in celiac suffers those with NCGS (Non Celiac Gluten Sensitivity) as well? 

Long term undiagnosed/untreated (noncompliant with the gluten free diet) Celiac disease invariably results in vitamin and mineral deficiencies because of poor nutrient absorption in the damaged villous lining of the small bowel. A gluten free diet can extend that because gluten free flours are not fortified with vitamins and minerals as is wheat flour since it is mandated by the FDA. Of particular concern would be the B-vitamin group and D3.

I should also add that a gluten free diet often corrects the toxic neurological effects of gluten but sometimes the damage is not totally corrected.

I would not rule out a separate neurological disease as autoimmune diseases tend to cluster. Once you develop one you are more likely to develop others than is the general population.

Thanks for your response Trents. Doctors have checked my vitamin levels with low iron and low-normal magnesium. I’ve been taking liquid iron 18mg and magnesium oxide 400 mg but wonder if I should take more or different regimen. Recently added prebiotics and probiotics as well.  Doctors have ordered EMG studies but takes over a month to get in. Anxiety building rapidly until then. Wish there was something to do or eliminate until then. Have you had similar experiences? 

[trents]

Did they check B vitamin levels? What about D?

Ditch the Magnesium oxide. It's not absorbed very well and often causes loose stools when taken in higher amounts to compensate for poor absorption. Take magnesium glycinate or magnesium citrate instead.

[Wheatwacked]

While it is true that one can't rule out another disease it is far more likely that you have malnutrion with symptoms that mimic the other disease.  For example, gall bladder problems and Non Alcoholic Fatty Liver Disease are often simply insufficent Choline intake.  They have been recommending that we limit eggs, liver, and beef (the main source of choline) for the past fifty years and we as a population just keep getting sicker.  Iodine intake is down to one half of what we consumed in 1970 and cancer is double, while the Japanese on traditional diet have half the breast cancer as Americans.

• 10,000 IU vitamin D to control autoimmune.
• 500 mg Thiamine - neurologic symptoms
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

[CeliacChica]

10 hours ago, trents said:

Did they check B vitamin levels? What about D?

Ditch the Magnesium oxide. It's not absorbed very well and often causes loose stools when taken in higher amounts to compensate for poor absorption. Take magnesium glycinate or magnesium citrate instead.

Vitamin D was 48.4 on a scale of normal from 30-100. Vitamin B was 350 on a scale of normal from 180-914. I have since switched to magnesium glycinate but curious if the variance from oxide helps the muscle function as much? I’m also breastfeeding now which complicated matters I’m sure for how much is “safe” in dosages. Maybe underdosing? 

[CeliacChica]

6 hours ago, Wheatwacked said:

While it is true that one can't rule out another disease it is far more likely that you have malnutrion with symptoms that mimic the other disease.  For example, gall bladder problems and Non Alcoholic Fatty Liver Disease are often simply insufficent Choline intake.  They have been recommending that we limit eggs, liver, and beef (the main source of choline) for the past fifty years and we as a population just keep getting sicker.  Iodine intake is down to one half of what we consumed in 1970 and cancer is double, while the Japanese on traditional diet have half the breast cancer as Americans.

• 10,000 IU vitamin D to control autoimmune.
• 500 mg Thiamine - neurologic symptoms
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

I need a big vitamin order here! Thank you for taking the time to list and detail the reasoning for each selection. My regimen clearly needs an overhaul. Any chance that you know if these levels are considered safe for breastfeeding woman? Thanks!

[Wheatwacked]

You can use the NIH Fact Sheets for professional to check.  for example Google: "fact sheet vitamin D"

Quote

Vitamin D Fact Sheet for Health Professionals

Prolonged exclusive breastfeeding without vitamin D supplementation can cause rickets in infants, and, in the United States, rickets is most common among breastfed Black infants and children . In one Minnesota county, the incidence rate of rickets in children younger than 3 years in the decade beginning in 2000 was 24.1 per 100,000. Rickets occurred mainly in Black children who were breastfed longer, were born with low birthweight, weighed less, and were shorter than other children. The incidence rate of rickets in the infants and children (younger than 7) seen by 2,325 pediatricians throughout Canada was 2.9 per 100,000 in 2002–2004, and almost all patients with rickets had been breastfed.

Quote

 

Surge of information on benefits of vitamin D

Dave McCarthy, MD, said medical research on the high prevalence of vitamin D deficiency motivated him to introduce the findings into his family practice, and his patients have had a substantial reduction in influenza and infections.

“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy, whose family practice is affiliated with The Memorial Hospital of Belleville, Ill.

 

 

[trents]

1 hour ago, CeliacChica said:

Vitamin D was 48.4 on a scale of normal from 30-100. Vitamin B was 350 on a scale of normal from 180-914. I have since switched to magnesium glycinate but curious if the variance from oxide helps the muscle function as much? I’m also breastfeeding now which complicated matters I’m sure for how much is “safe” in dosages. Maybe underdosing? 

Which Vitamin B? There isn't just one. There are 12 of them. That's why we recommend a gluten free B-complex as a supplement.

[Scott Adams]

4 hours ago, CeliacChica said:

Vitamin D was 48.4 on a scale of normal from 30-100. Vitamin B was 350 on a scale of normal from 180-914. I have since switched to magnesium glycinate but curious if the variance from oxide helps the muscle function as much? I’m also breastfeeding now which complicated matters I’m sure for how much is “safe” in dosages. Maybe underdosing? 

I use magnesium citrate from Costco, and I had symptoms similar to yours for many years after going gluten-free.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

[CeliacChica]

1 hour ago, Scott Adams said:

I use magnesium citrate from Costco, and I had symptoms similar to yours for many years after going gluten-free.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

Thank you Scott! Costco is always the answer. Was your ataxia fairly subtle or quite pronounced? Was diffuse muscle twitching a component of your presentation as well? What you said resonates strongly with me regarding my medical team lacking direction on a comprehensive vitamin regimen after diagnosis. My only direction was “go gluten free” and see a dietician. 

[CeliacChica]

4 hours ago, trents said:

Which Vitamin B? There isn't just one. There are 12 of them. That's why we recommend a gluten free B-complex as a supplement.

Vitamin B-12 was tested. Seems incomplete now if you ask me. I was searching for a sublingual B-complex but only found ones with gluten of course! 

[trents]

3 minutes ago, CeliacChica said:

Vitamin B-12 was tested. Seems incomplete now if you ask me. I was searching for a sublingual B-complex but only found ones with gluten of course! 

B-complex gluten free can be had also at Costco. Most of their Kirkland Signature and Nature Made products are gluten free and it will state so in the bottle if it is. You needn't worry about overdosing on B vitamins. They are water soluble and you pee out the excess. You will likely notice your pee being a brighter yellow. Normal. All good!

Edited November 3, 2023 by trents

[Scott Adams]

On 11/3/2023 at 11:59 AM, CeliacChica said:

Thank you Scott! Costco is always the answer. Was your ataxia fairly subtle or quite pronounced? Was diffuse muscle twitching a component of your presentation as well? What you said resonates strongly with me regarding my medical team lacking direction on a comprehensive vitamin regimen after diagnosis. My only direction was “go gluten free” and see a dietician. 

In the past I've had minor issues with muscle twitching, but for me the worst symptoms were numbness and painful tingling in my feet, restless leg syndrome, and stiff necks and tingling in my neck and head area which seemed to be caused by muscle knots in my neck and shoulders. Although my doctor was keen on tracking all of this when I went in for physicals--he'd do very basic tests touching my feet and legs with a sharp instrument, and them put his findings into his notes, he never once mentioned anything about nutrient deficiencies, even though I was recovering from celiac disease. I let this go on for almost two decades before I began to take supplements that helped a great deal.

[CeliacChica]

17 minutes ago, Scott Adams said:

In the past I've had minor issues with muscle twitching, but for me the worst symptoms were numbness and painful tingling in my feet, restless leg syndrome, and stiff necks and tingling in my neck and head area which seemed to be caused by muscle knots in my neck and shoulders. Although my doctor was keen on tracking all of this when I went in for physicals--he'd do very basic tests touching my feet and legs with a sharp instrument, and them put his findings into his notes, he never ones mentioned anything about nutrient deficiencies, even though I was recovering from celiac disease. I let this go on for almost two decades before I began to take supplements that helped a great deal.

Wow! 20 + years is no joke! Was the twitching all over and sporadic? Or patternized? How long did it take for supplements to help you?!

[Scott Adams]

In my case it seem very sporadic, with the exception of the RLS which isn't fully resolved, but much better. After experimenting with various supplements over time it was ~3-6 months before most of the ataxia and muscle issues were gone. More about my supplementation is here:

 

[trents]

I developed RLS some years ago and was taking Ropinirole for it which mostly controlled it but it was getting slowly worse. Independent of that issue, I made a decision to discontinue the statin I was on, much to the chagrin of my physician. As soon as I stopped the statin the RLS also stopped.

[CeliacChica]

13 hours ago, trents said:

I developed RLS some years ago and was taking Ropinirole for it which mostly controlled it but it was getting slowly worse. Independent of that issue, I made a decision to discontinue the statin I was on, much to the chagrin of my physician. As soon as I stopped the statin the RLS also stopped.

Thank you Trents! So interesting to hear medication interactions that you wouldn’t guess impact symptomatology but do! Perhaps RLS has different presentations in the musculature  from person to person that manifests in more of a “twitchy” manner. … I don’t know!

[DebJ14]

On 11/3/2023 at 1:59 PM, CeliacChica said:

Thank you Scott! Costco is always the answer. Was your ataxia fairly subtle or quite pronounced? Was diffuse muscle twitching a component of your presentation as well? What you said resonates strongly with me regarding my medical team lacking direction on a comprehensive vitamin regimen after diagnosis. My only direction was “go gluten free” and see a dietician. 

I would amend that advice to Go Gluten Free and see a Board Certified Nutritionist, not a dietician.  They can order the proper nutritional testing that a dietician knows nothing about.  Then, based on those results can put you on a supplementation plan.  You will need to retest about every 6 months to make sure the supplements are having the desired effect.  If not, then genetic testing may be in order to see why levels of certain nutrients are not at the levels they should be.  After a year of heavy duty B12 complex and D supplementation, those 2 were still low for me.  Turned out to be  genetic mutations.  They upped the doses dramatically, and I will be on the high doses the rest of my life.  

[Yaya]

On 11/3/2023 at 2:02 PM, CeliacChica said:

Vitamin B-12 was tested. Seems incomplete now if you ask me. I was searching for a sublingual B-complex but only found ones with gluten of course! 

Puritan Pride:  order online.  I take their gluten-free sublingual B12.  It comes in several strengths.  I take the 5000 once per week.

[CeliacChica]

8 hours ago, Yaya said:

Puritan Pride:  order online.  I take their gluten-free sublingual B12.  It comes in several strengths.  I take the 5000 once per week.

Awesome! I’ll have to give it a try, but good to know it’s not daily! Thank you : )

[DebJ14]

11 hours ago, Yaya said:

Puritan Pride:  order online.  I take their gluten-free sublingual B12.  It comes in several strengths.  I take the 5000 once per week.

My nutritionist recommended the Thorne B 12 Complex.  It has the extra B 12 plus the other necessary B vitamins.

[Yaya]

9 hours ago, DebJ14 said:

My nutritionist recommended the Thorne B 12 Complex.  It has the extra B 12 plus the other necessary B vitamins.

I take the B50 complex as a separate capsule. The B12 is sublingual for better absorption, the other is a capsule.  

[CeliacChica]

15 hours ago, Yaya said:

I take the B50 complex as a separate capsule. The B12 is sublingual for better absorption, the other is a capsule.  

Awesome information! I am all about the absorption! I’ll have to give these a try. Thank you all so much for the handy recommendations! : )

 

[aperlo34]

On 11/17/2023 at 12:36 AM, CeliacChica said:

Awesome information! I am all about the absorption! I’ll have to give these a try. Thank you all so much for the handy recommendations! : )

 

How are you feeling now? 
I’m 2.5 Months in and feeling similar. Muscles twitching, some cramps in my muscles etc.