Muscle Twitching

[Scott Adams]

Hello @aperlo34, what types of supplements are you taking? Your symptoms could be related to vitamin/mineral deficiencies.  

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.

 

 

 

[Yaya]

I never had muscle twitching that I would relate to Celiac Disease (celiac disease).  However, I now have Long Covid and muscle twitching, burning, and other issues cropped up with that.  Predating all was restless leg syndrome (RLS).  Are you talking about RLS?  I've had that since '99.  It gets progressively worse.  

[aperlo34]

8 minutes ago, Scott Adams said:

Hello @aperlo34, what types of supplements are you taking? Your symptoms could be related to vitamin/mineral deficiencies.  

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.

 

 

 

Hi Scott, thanks for the reply. 
 

I’m currently taking 

3000IU vitamin D3

centrum multivitamin 

500mg vitamin C

1000mcg B12 naturemade softgel

Omega 3 (for dry eyes)

My latest labs for vitamins were

D - 43.6 (range 30-100)

B12 - 406 (range 232-1245)

Folate - 11.4 (range >3.0)

ferritin - 117 (30-400)

magnesium - 2.3 (1.6-2.3)

Calcium - 9.9 (8.7-10.2)

 

I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me. 

Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500. 
 

Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅

 

I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body!

Thank you so much in advance for any input/guidance.

 

 

[Scott Adams]

Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.

[Wheatwacked]

Welcome @aperlo34,

The transistion to GFD seems scarier than it is.  It took my infant son six months to heal.  Adults take longer, six months to two years to heal the gut.  

On 11/19/2024 at 2:15 PM, aperlo34 said:

I’m horrified that I might have something else wrong with me. 

There are over 200 various symptoms and diseases that result from gluten and the resulting vitamin and mineral deficiencies malabsorption syndrome causes.  Most will go away in time.  I counted nineteen symptoms that improved with gluten free diet.  But it is also tricky, because gluten is found even in products like shampoo.  Read labels.  Be alert to cross contamination.

Possibly the cramps in your side is from the withdrawal of gluten.  Gluten activates the opiod receptors and it takes time to clear.  It takes time to heal.

Is that vitamin D3 daily?  I need to take 10,000 IU to keep my blood at 80 ng/ml the natural level.  It also help anxiety.   Vitamin D Is Not as Toxic as Was Once Thought

Low lithium levels in drinking water can affect anxiety.  Perhaps the increase in mass shootings is because everyone drinks bottled water.  5 mg of Lithium Orotate helped me with impatience to get results. ie. let things go when appropriate.  Lithium in the public water supply and suicide mortality in Texas

Deficiency in the B vitamins especially Thiamine Riboflavin, Nicotinic Acid and Pantothenic Acid are common and deficiency can have all kinds of weird effects. 

Iodine: Iodine Insufficiency in America: The Neglected Pandemic

• Vitamin D 10,000 IU (250 mcg)
• DHEA 100 mg
• 500 mcg Iodine 10 drops of Liquid Iodine
• B1 Thiamin 250 mg - Fatigue, irritability, loss of appetite, poor memory, and sleep disturbances, leg cramps. 
• B2 Riboflavin 100 mg
• B3 Nicotinic Acid 500 mg
• B5 Pantothenice Acid 500 mg
• Vitamin C 500 mg
• Selenium twice a week 200 mcg

Some of the ingredients in your multivitamin can cause problems.  Especially folic acid.  Folic acid supplementation was associated with increased risk of prostate cancer. By contrast, baseline dietary folate was inversely associated with prostate cancer risk.

Eat foods low in omega 6 to reduce inflammation.

 

 

 

 

Edited November 21, 2024 by Wheatwacked

[knitty kitty]

Hello, I'd have been here sooner, but I got tangled up in yarn...

Restless leg syndrome (RLS) I've had. It's often associated with iron deficiency and B12 deficiency, but can also show up with any deficiencies in Vitamin C, copper, Vitamin D, and Thiamine, Pyridoxine, and magnesium.  B12, Thiamine, and Pyridoxine will also help with peripheral neuropathy, that burning sensation.  

(See... https://pmc.ncbi.nlm.nih.gov/articles/PMC9804944/ )

Long Covid can be the result of nutritional deficiencies, as well.  Zinc, Selenium, Vitamin D, B12, Thiamine, Riboflavin, Pyridoxine, Niacin, and Choline.  (See... https://pmc.ncbi.nlm.nih.gov/articles/PMC10015545/  and https://pubmed.ncbi.nlm.nih.gov/36587225/ )

I agree with @Wheatwacked to get Vitamin D level higher, 80 ng/ml.  Taking high doses of Vitamin D to correct a deficiency has been found to be beneficial.  I took Vitamin D3 supplements throughout the day when I had a severe deficiency.  It got my level up quickly and I started feeling much better.  

(See... https://pubmed.ncbi.nlm.nih.gov/28167237/ , https://pmc.ncbi.nlm.nih.gov/articles/PMC4824637/)

Vitamin D is a fat soluble vitamin.  Fats can be difficult to digest and absorb, so most of the newly diagnosed can be low in the four fat soluble vitamins (A,D,E,K).  A deficiency in Vitamin A can cause dry eyes.  Omega Threes and Evening Primrose Oil help with dry eyes, too.  (https://pmc.ncbi.nlm.nih.gov/articles/PMC10363387/)

Blood tests are not accurate measurements of vitamin levels.  Blood tests will reflect any supplements being taken.  Blood tests do not measure how much of a vitamin is stored inside cells.  Supplementing with all eight essential B vitamins for several months will boost your ability to absorb the needed nutrients.

A deficiency in Cobalamine, B12, can be aggravated by anesthesia.  Cobalt in Cobalamine binds irrevocably, irreversibly with the Nitrogen in anesthesia, rendering B12 useless.  Supplementing with B12 after exposure to anesthesia is beneficial.  (https://pubmed.ncbi.nlm.nih.gov/8250714/)

Pyridoxine B6 and Riboflavin B2 as well as B12 are needed to lower histamine levels (produced during the inflammation process that occurs in Celiac Disease). This can help relieve the sinus pressure.  Riboflavin B2 and Thiamine B1 are helpful with headaches.  

We need more Thiamine when we are emotionally stressed, physically ill, and physically active.  Benfotiamine, a form of Thiamine, has been shown to promote intestinal healing.  Thiamine is helpful in relieving anxiety.  

(https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/  , https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ )

Celiac Disease causes malabsorption of vitamins and minerals.  It is rare to have a single vitamin deficiency.  Malabsorption in celiac disease affects all the nutrients we need.  Some vitamins just run out sooner than others because they can't be stored or we have a metabolic need for more.  (https://pmc.ncbi.nlm.nih.gov/articles/PMC10106602/ )

Hope this helps!

[Yaya]

I take all vitamins and supplements.  My cardiologist has me taking B12 5,000 once per weeks.  He gives me complete blood work every 6 months.  He's still building my D levels which is now in 60s.  He wants them in low 80s.  I take 5,000 IU's daily.  With this dosage I've gone from 42 to 65 over a period of about 5 years.  It builds very slowly.  

As far as iron, I take a double dose of gentle iron with C on an empty stomach on alternate nights.  Yes, iron is a component for many of us with RLS, but mostly "brain iron" that in some people may require iron transfusions. 

 

[knitty kitty]

Oh, @Yaya!

Five years???  How awful for you to suffer so long!

My Vitamin D came up in a matter of months.  High dose Vitamin D has been used in the past to correct rickets and is a safe method to correct Vitamin D deficiency.  

I took 1000 IU several times a day, every day for several weeks.  I ate them like m&m's when I was severely deficient.  My brain craved them.  I felt so much better afterwards.  On maintenance dose now.  Yes, the craving went away as my level reached 80-95.  

Ask your cardiologist about supplementing with.Benfotiamine.

[Yaya]

Kitty,

Be careful with massive transfusions of D, it's dangerous per my cardiologist.  Your note made me confirm and he's right.  I found this article called: 

Too much vitamin D may harm bones, not help - Harvard Health

The study was released on Dec 1, 2019 · and appeared in the Aug. 27 issue of JAMA which found that, compared with people who took moderate amounts of vitamin D, adults who took large amounts daily not only didn't see additional gains in bone density, but in some cases ended up worse off.  I especially must be careful because, like many Celiacs, I have low bone density.  I have been taking Prolia shots for about 5 years.  

Also there is such a thing as vitamin D toxicity per my cardiologist.  That's why he carefully monitors my #s and wants me to raise levels slowly.  

Take care.

 

[trents]

Yes, Yaya, it is possible to develop vitamin D toxicity with overdosing since it is a fat soluble vitamin but the dosage needed to get to that point is much larger than was thought years ago. Years ago, doctors were very cautious about D supplementation but more recently the medical community has relaxed their caution as it proved to be overdone. Individual practitioners are not always up to date on everything and sometimes are operating on dated information.

Edited November 26, 2024 by trents

[Yaya]

Thank you.  I'll run it by him on my next visit.  

[trents]

Can you link the 2019 JAMA study? When you say "massive doses of D" how large are you talking about? 

[Yaya]

[Yaya]

My cardio did not hand me a study.  He just determined the dose for my size/weight.

Here is one that is 4 days old:  https://www.healthline.com/nutrition/how-much-vitamin-d-is-too-much

This is the D study: https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-d-toxicity/faq-20058108

This is a boring video I'm watching on Celiac.  

 

[knitty kitty]

https://jamanetwork.com/journals/jama/fullarticle/2748796

If read carefully, this study @Yaya refers to was done on healthy people.  

"Meaning  Among healthy adults, supplementation with higher doses of vitamin D did not result in improved bone health; further research would be needed to determine whether it is harmful."

"...311 community-dwelling healthy adults without osteoporosis, aged 55 to 70 years, with baseline levels of 25-hydroxyvitamin D (25[OH]D) of 30 to 125 nmol/L."

 

High dose Vitamin D doesn't have substantial benefits if your Vitamin D level is already normal.

High dose Vitamin D is used to restore severely deficient Vitamin D levels to normal levels. 

"...high-dose vitamin D therapy, as a useful tool to rapidly replete vitamin D status, may support immune function in the context of an acute or chronic infection" ...and... "Therefore, in the context of inflammation and conditions where anemia is prevalent, including chronic kidney disease, cardiovascular disease, and critical illness, high-dose vitamin D supplementation may be beneficial in rapidly repleting and maintaining 25(OH)D concentrations and may serve as a complement to other treatment regimens to improve anemia."

"Among those who had insufficient 25(OH)D (<75nmol/L) at baseline, the High Dose group improved significantly and to a comparatively greater degree on the PRM."

These quotes are from the articles I posted earlier.

[knitty kitty]

"Doses higher than the RDA are sometimes used to treat medical problems such as vitamin D deficiency, but these are given only under the care of a doctor for a specified time frame. Blood levels should be monitored while someone is taking high doses of vitamin D."

Quoted from the Healthline article @Yaya linked above...

 

[trents]

Yaya, from the JAMA study you refer to:

"Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity."

No one on this forum is recommending  taking anywhere near that amount. We're talking about 5-10,000IU daily.

[Yaya]

On 11/15/2023 at 5:18 PM, Yaya said:

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

This is what my Cardiologist prescribed for my weight.  My husband is prescribed 10,000 units.  When I say prescribed I do not mean a prescription is needed, just that the 2 respective dosages are what he ordered according to our size/weight.  My cardiologist is accepted as one of Houston's leading cardiologists. 

[Beverage]

The forms of vitamins really mattered for me, maybe not for everyone but very much for me. Learned so much here.

This b12, recommended by @Ennis-TX has really helped me since diagnose.  I can tell when i run out that i don't feel as good.

LIQUIDHEALTH Vitamin B12 Methylcobalamin Liquid Drops with Sublingual Hydroxocobalamin - Boost Energy, Support Immune System, Improve Memory & Concentration - Vegan, Sugar Free, Non-GMO (2 Pack) https://a.co/d/c3cxXt7

 

i also had RLS, one of my few noticeable symptoms before diagnosis. It rears up when I slack off the supplements or drink wine. I found 2 of these a day keeps it at bay, get it very rarely now:

Limited-time deal: ANDREW LESSMAN Circulation & Vein Support for Healthy Legs 60 Capsules - High Bioactivity Diosmin, Butcher's Broom, Visibly Reduces Swelling & Discomfort in Feet, Ankles, Calves, Legs https://a.co/d/7int9i9

 

I also take the procapslabs.com b complex, it has the methyl forms, which makes a difference for me:

ANDREW LESSMAN High Potency B-Complex 180 Capsules - with High Levels of Folate Complex & Biotin, Promotes Cellular Growth, Energy, Immune Function, Detoxification, Fat Metabolism & More https://a.co/d/4fkAmFx

 

I also take extra thiamine, in form benfotiamine, as recommended by @knitty kitty which tremendously helped asthma. 

[Wheatwacked]

On 11/25/2024 at 1:22 AM, Yaya said:

He's still building my D levels which is now in 60s.  He wants them in low 80s.  I take 5,000 IU's daily.  With this dosage I've gone from 42 to 65 over a period of about 5 years.  It builds very slowly.  

It took me 2015 to 2021 at 10,000 IU a day to get to 80 ng/ml. In 2019 I was still only 47 ng/ml The highest it has reached is 93.  Tested every 3 months.  

 

Quote

Mayo Clinic: Vitamin D Is Not as Toxic as Was Once Thought  "Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL."

While a one time massive dose can be used to quickly raise vitamin D levels, its effects only last three months.  Because vitamin D is stored in fat, an obese person would require more to raise blood level.  

 

Effect of High-Dose Vitamin D Supplementation on Volumetric Bone Density and Bone Strength
 

Quote

 

"There is growing evidence that for bone, the benefit of vitamin D supplementation is only seen in the treatment of vitamin D deficiency."

"Baseline, 3-month, and 3-year levels of 25(OH)D were 76.3 nmol/L = 30 ng/ml, 76.7, and 77.4 nmol/L = 31 ng/ml for the 400-IU group; 81.3 nmol/L = [32ng/ml],115.3, and 132.2 nmol/L =[53 ng/ml] for the 4000-IU group; and 78.4 nmol/L = 31 ng/ml, 188.0, and 144.4 nmol/L = 58 ng/ml for the 10 000-IU group." 

"the risk of hypercalcemia and hypercalciuria is higher in individuals taking calcium supplementation, suggesting that supplemental calcium intake may be a significant driver of hypercalcemia"

 

The point of higher vitamin D is for the mental health and immune system requirements.  Also this study included supplementing calcium. 

"Research suggests that women with low levels of vitamin D have a higher risk of breast cancer. Vitamin D may play a role in controlling normal breast cell growth and may be able to stop breast cancer cells from growing." This information is provided by Breastcancer.org. https://www.breastcancer.org/risk/risk-factors/low-vitamin-d-levels
Higher vitamin D levels have been consistently associated with reduced risks of colorectal cancer https://www.cancer.gov/about-cancer/causes-prevention/risk/diet/vitamin-d-fact-sheet

Quote

 

the high-dose vitamin D group initially took 8,000 IU a day for 14 days, then 4,000 IU a day thereafter. The low or standard-dose vitamin D group took 400 IU daily during all cycles. All patients were asked not to take any other vitamin D or calcium supplements during the trial period.

The trial’s primary outcome measure was progression-free survival – the time until the disease began to worsen, or death – which was longer in the high-dose group. Another measure that was calculated – the hazard ratio for disease progression or death – revealed 36 percent lower odds in the high-dose group.

The researchers also sampled patients’ blood to measure changes in the levels of 25-hydroxyvitamin D [25(OH)D], which is a standard test to determine a person’s vitamin D status. This test showed that only 9 percent of the patients in the clinical trial had sufficient vitamin D at the beginning of treatment. Over the course of the study, patients receiving low-dose had no substantial change in their vitamin D levels, while those in the high-dose group soon reached the vitamin D-sufficient range and maintained it.  https://www.dana-farber.org/newsroom/news-releases/2019/high-dose-vitamin-d-shows-benefit-in-patients-with-advanced-colorectal-cancer

 

 

[Yaya]

For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that.

Have a Happy Thanksgiving.  I'm gone for a few days.