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Muscle Twitching
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49 posts in this topic

Twenty eight (?) years ago I was a lab tech for a psychologist studying whether exercise helped rats recover from brain trauma, which it clearly did.

I want to thank you and the people doing this study. My dd was in an accident in 1989 which resulted in her brain injury. She was in a coma for months. We found the best rehab hospital in the country (in Bryn Mawr, PA ). It was not close to us but we knew whatever care she got right after the accident would determine how she lived the rest of her life. Exercise was strongly push upon her even while in a coma. She still has a brain injury but she walks and participates in life because of the excellent care she was given. So thank you.

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Srthomas21 - Primarily muscle twitching and stiffness...throw in a dash of buzzing and some pain. My right leg ached pretty badly last night. That was a first and kept me up for awhile. I haven't noticed problems with motor control, clumsiness, or gait.

CarbQueen - How long did it take for your symptoms to subside after diagnoses? How intense/often was your twitching and when did it go away? Did the healing process take a longer period of time after diagnoses compared to isolated incidents of ingesting gluten?

Jean'sBrainonGluten - Your theory certainly makes sense. If indeed gluten is causing brain damage I would assume some sort therapy would be in order. I've been taking 400mg - 600mg of magnesium daily for nearly a month. I try to ensure that I at least have one banana a day. I've began some light stretching and leg lifts. Also, I've been using a heating pad on my calves which seems to do some good.

Thanks for the feedback.

After diagnoses my symptoms took approximately 6 weeks to start to to diminish. By 3 months I was feeling almost symptom free.

My twitching was almost constant and on a scale of 1 to 10 with 1 being the least, it was about 7.

Yes the healing took longer after diagnoses compared to isolated incidents of ingesting gluten. 3 months for recovery after diagnoses and 1 to 3 days for accidental glutening.

Jean's info is useful. I'm a survivor of an auto accident, and a patient of a physiotherapist, neurologist, cardiologist, head/nose/throat specialist, orthodontist, internal medical doctor, cranial sacral therapist, etc.

I was a pre med student before my thyroid stopped functioning. I learned to doctor myself.

Maybe at some point I will study naturopathic medicine.

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Jean'sBrainonGluten wrote: "lots of meats have vegetable broth added for 'flavor' and that can have gluten."

I just found this out!! I thought I was doing so well doing my own cooking with plain old ingredients like meat and veggies and potatoes. Then I read something that made me realize I need to read the labels for meat, so next time I was at the grocery store I picked up packets of fresh and frozen chicken and pork and lo and behold I kept seeing that they were injected with 'broth'. (And, of course, so many broths have gluten and MSG.) That was a sad day. Hormel labels well, and Perdue has a list of gluten-free products.

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Along with the twitching in my calves that I feel... I also have twitching that I can see, but that I do not feel. Anyone experience something similar to this?

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I'm not sure what you mean by not feeling the movement. I got twitching in my legs when I was lying down. I didn't feel it directly but I felt my skin moving against the bedclothes and the bed moving because the twitches were quite strong.

What I decided is that some of my symptoms are scary and I wish they would go away faster but

I had the MRI and the carotid ultrasound. The MRI showed nonspecific lesions and the ultrasound was normal - nothing desperate except how I feel, so I'm not going to panic

there are plenty of people in the medical literature whose symptoms were much worse than mine and who recovered - it just took time - the guy with out and out epileptic seizures took nearly a year and he was about your age

even in a person your age it takes several months for gluten damage to the brain to heal, I'm over twice your age so I figure I've got months or years before I'm much better. It isn't what I want, but it is true.

in the meantime you can

try adding a little more magnesium - I take quite a lot and find it helpful

continue with exercise and zealous gluten free eating, check personal care products, meds, cross contamination

track your food and other things to see if the symptoms wax and wane and what might be triggering them

look at foods that trigger migraines since they may increase brain pressure and could be contributing to the twitching (aged cheese, preserved meats, citrus, beans, check the web)

practice self-calming and judicious distraction.

Hope this helps

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I do get tremors in my hands that I can see but not feel - see my discussion of scary symptoms and trust in the process, above.

It's kind of horrifying that wheat or gluten can cause symptoms this extreme and be so unknown. The saddest case I saw online was in a psychiatric journal - about a 67 year old woman with 'IBS', visual disturbances, white matter lesions, and hallucinations (all on record in later literature for gluten white matter lesions) who was told she had dementia and was just going to get worse until she died. Thank God we at least know what is happening and have hope to get better.

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I've read some research that suggests that Gluten Ataxia presents brain lessions similar to those found in MS patients. Lessions are found in the cerebullum which is the area that controls coordination. I also found out through researching my DNA results that the gluten intolorant gene I have a double copy of is found in most people diagnosed with MS. Who knows what that means.

Ataxia basically presents as a balance issue. There is a simple test. Stand with your feet together and your arms at your side and close your eyes. People suffering from Ataxia will literally start to teeter tooter from side to side and run the risk of falling down. "Normal" people can do this without a problem.

I also have had the muscle twitching. If I'm taking all my vitamins regularly that problem seems to go away. The B complex and the magnesium seem to help the most to keep the twitching at bay. I'd say that muscle twitching is more about vitamin levels than any type of brain disorder.

I've been gluten-free since Dec 2006. I still have balance issues. But the bright side is they have not gotten worse and have possibly gotten some what better. It was the anemia that led me to an eventual Celiac Diagnosis. My levels of B, D, C, A and iron were way off. I still supplement with B, D and iron to keep those levels up. If I recall it took about six months for the twitching to stop once I started supplementing and went gluten-free.

Hello all. I'm 23 and I was diagnosed with Celiac disease 11 days ago. Both my blood work and biopsy tested positive. I haven't touched gluten since my diagnoses.

I do not have any gastrointestinal symptoms...

My primary doctor sent me to a spine and joint doctor for buzzing/tingling & twitching in my legs. She did an MRI which revealed a single white matter lesion on my brain. She suspected I had MS and referred me to a neurologist. My neurologist quickly dismissed MS and said the lesion was non-specific.

It was my neurologist who requested the blood work for celiac disease. My symptoms began with buzzing in my legs and feet which progressed to twitching and stiffness and than finally to muscle pain (mostly in calves). The twitching has since jumped around here and there, but primarily it settles in my calves.

My pain has greatly diminished and the buzzing has all but gone away, but the twitching still persists. I think the twitching has become less intense, but honestly I cannot say for sure. Also, stiffness is still there...

I am quite concerned about the twitching because my B12 (517) read within normal levels. And I understand a B12 deficiency is often the cause of twitching in Celiac patients. Seeing how the twitching is still hanging around I fear that perhaps the twitching isn't connected to my gluten allergy and may indicate something much worse. That's where the anxiety kicks in...

1. Do any of you experience muscle twitching?

2. If so, how long does it normally take for it to go away after exposure?

3. Do you have any vitamin deficiencies?

4. Is there anything I can do for treatment?

Thanks!

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My celiac started out with all NEURO/NERVE problems....had the CT-scan for MS just like everyone else with celiac seems to have, resulting with a negative. Low Calcium can cause Muscle twitching, you need to have lab work drawn to show your vitamin and mineral deficiencies, you probably have more than one, Ferritin (iron), B12, etc.......

Justine RN

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I had muscle twitching before the DX and then went gluten free (strict) and now 2.5 years later the muscle twitching in the legs is back even though all my lab values are normal. I'm still going to keep taking my calcium, vit.D and multi vit and even up the dose to see if that works......(of course, you should talk to a dr. before taking doses of meds above the recommended daily value)

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So, as I understand it, Celiac Disease causes inflammation throughout your entire body. I have a lots of fluid in my joints. Lots of popping. I don't know if it is related. Does anyone take any anti-inflammatory products while detoxing? Garlic pills, ginger, turmeric, etc... Any magical elixirs I should be aware of?

Thanks.

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I'm 26 yrs old and have not been officially diagnosed. My blood work was negative. However, I took it upon myself to test the gluten-free diet. It was my last resort! for the last 5 yrs I have had every symptom under the sun and about 3 months ago I got really sick. It was beyond my "normal symptoms" ( GI symptoms that I had learned to cope with), my body literally began to fail me. I could barely walk (extreme muscle weakness), my chest was pounding out of my chest, my muscle twitching/spasms/tingle/numbness extended from head to toe (felt like internal turrets, and my leg felt like it was going to explode -- extremely painful!) I think it scared me the most when it reached my neck and face. I felt as though a thread was tugging through every facial muscle. There were quite a few other symptoms as well including blurry vision, migraines and ear aches-- all in all I was very scared! After about a few weeks of having this dying feeling I went to the ER. "Everything is fine, just get some rest." At this point I had lost all hope! Not one doctor could "find" a thing. Shortly after the ER visit I stumble across celiac disease in my research. I couldn't believe ALL of my symptoms matched! ---- As I mentioned above, I began a gluten-free diet. Its been 2 1/2 months and I feel great! Now, by great I mean I see light at the end of the tunnel. All of my symptoms are much less severe. I am a bit frustrated because just when I think am 100% gluten-free I find another hidden source. When my symptoms flare up I have to back-track through everything I've eaten to try and uncover the culprit. On a positive note it is well worth the sacrifice and discipline. "Sleepie"-- Keep up the gluten-free diet ...you will see a difference. Some people just take longer than than other to heal.

I have a bit of a random question. I have noticed over the last year or so I have lost my ability to articulate. I used to be able to articulate myself very well and it seems as though I can't organize my thoughts or even connect my mental thoughts to my verbiage (what I actually end up saying). For example: I was having a conversation with friend. She was looking for a roommate and I told her I knew someone. She as if the person was male or female and I stumbled over my words and said " ffmmmalfemale" . She started laughing "what?! ... both? hahah" I said " NO! She's a he." I thought I had corrected myself and it turns out I made it worse every time I opened my mouth! -- This is a very specific (embarrassing) incident but I've noticed it to be a general problem lately. Is anyone else experiencing this????

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I'm 26 yrs old and have not been officially diagnosed. My blood work was negative. However, I took it upon myself to test the gluten-free diet. It was my last resort! for the last 5 yrs I have had every symptom under the sun and about 3 months ago I got really sick. It was beyond my "normal symptoms" ( GI symptoms that I had learned to cope with), my body literally began to fail me. I could barely walk (extreme muscle weakness), my chest was pounding out of my chest, my muscle twitching/spasms/tingle/numbness extended from head to toe (felt like internal turrets, and my leg felt like it was going to explode -- extremely painful!) I think it scared me the most when it reached my neck and face. I felt as though a thread was tugging through every facial muscle. There were quite a few other symptoms as well including blurry vision, migraines and ear aches-- all in all I was very scared! After about a few weeks of having this dying feeling I went to the ER. "Everything is fine, just get some rest." At this point I had lost all hope! Not one doctor could "find" a thing. Shortly after the ER visit I stumble across celiac disease in my research. I couldn't believe ALL of my symptoms matched! ---- As I mentioned above, I began a gluten-free diet. Its been 2 1/2 months and I feel great! Now, by great I mean I see light at the end of the tunnel. All of my symptoms are much less severe. I am a bit frustrated because just when I think am 100% gluten-free I find another hidden source. When my symptoms flare up I have to back-track through everything I've eaten to try and uncover the culprit. On a positive note it is well worth the sacrifice and discipline. "Sleepie"-- Keep up the gluten-free diet ...you will see a difference. Some people just take longer than than other to heal.

I have a bit of a random question. I have noticed over the last year or so I have lost my ability to articulate. I used to be able to articulate myself very well and it seems as though I can't organize my thoughts or even connect my mental thoughts to my verbiage (what I actually end up saying). For example: I was having a conversation with friend. She was looking for a roommate and I told her I knew someone. She as if the person was male or female and I stumbled over my words and said " ffmmmalfemale" . She started laughing "what?! ... both? hahah" I said " NO! She's a he." I thought I had corrected myself and it turns out I made it worse every time I opened my mouth! -- This is a very specific (embarrassing) incident but I've noticed it to be a general problem lately. Is anyone else experiencing this????

Yes, I have had similar issues. I have been gluten-free/CF/SF since April of this year (2009) and found some of this same thing happening to me. It has been somewhat scary. I think that some of it is related to the neurological component of celiac disease is being found to be far more common than thought, but I also think some of it is nutritional issues. The FDA mandates vitamin enrichment of many different foods. Probably because our mass production/processing of them strips so many out that nutritionally they are worthless otherwise. So when we cut out all these 'enriched' foods we take a huge hit in a variety of vitamins. After doing quite a bit of research I have found adding extra-virgin organic coconut oil and kelp into my diet (along with some other vitamins and supplements) has helped quite a bit. There is also a serious withdrawal for some people from gluten. Some of the research points to an opioid like effect on the brain, and when that is removed there are often some symptoms the crop up.

The neurological and CNS effects of Celiac Disease can take quite some time to resolve and heal, and there will be various ups and downs as your body goes through various phases of healing. Try and make sure you are eating as much unprocessed and preferably organic or home-grown foods and meats (untreated with hormones, pesticides, chemical fertilizers), local farm eggs, fermented foods (yogurt, kombucha, live sauerkraut), etc. This really does have a significant toxin impact on your body.

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The first year of going gluten free I had terrible cramps in my leg muscles, the bottoms of my feet, and in my hips. At the same time I was rapidly losing weight and going through regular unintentional glutenings from foods that I didn't realize contained gluten (like flavoured potato chips, salad with the crutons picked off, etc.) After the first year, it got much better.

I still have the shakey-fiine tremor-clumsiness happen to me from time to time. This helps: measure a third of a teaspoon of baking soda and mix it into a glass of water. Stir until it is completely dissolved. Then drink it all down, fast. It is salty and doesn't taste great, but just drink it all down quickly. Follow with half a glass of water. The shaking usually stops within 20 minutes.

A doctor explained to me that the shakiness and clumsiness can sometimes be attributed to an electrolyte imbalance. The baking soda works because it restores the electrolytes.

Not sure if this will work for everyone. It is just what I do, and helps a lot.

Also, a note on tingling, clumsiness, shakiness: a neurologist explained this to me: if your symptoms occur on both sides your body, then it is probably an electrolyte imbalance. BUT if your symptoms always occur on one side of your body (i.e. you always drop things with your left hand, you always bump your left hip, your left ankle always tingles, etc) then it could be something neurological. It is worth mentioning to your doctor if the shaking/clumsiness/tremor is always on one side of the body.

Hope this all helps!

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Hello all. I'm 23 and I was diagnosed with Celiac disease 11 days ago. Both my blood work and biopsy tested positive. I haven't touched gluten since my diagnoses.

I do not have any gastrointestinal symptoms...

My primary doctor sent me to a spine and joint doctor for buzzing/tingling & twitching in my legs. She did an MRI which revealed a single white matter lesion on my brain. She suspected I had MS and referred me to a neurologist. My neurologist quickly dismissed MS and said the lesion was non-specific.

It was my neurologist who requested the blood work for celiac disease. My symptoms began with buzzing in my legs and feet which progressed to twitching and stiffness and than finally to muscle pain (mostly in calves). The twitching has since jumped around here and there, but primarily it settles in my calves.

My pain has greatly diminished and the buzzing has all but gone away, but the twitching still persists. I think the twitching has become less intense, but honestly I cannot say for sure. Also, stiffness is still there...

I am quite concerned about the twitching because my B12 (517) read within normal levels. And I understand a B12 deficiency is often the cause of twitching in Celiac patients. Seeing how the twitching is still hanging around I fear that perhaps the twitching isn't connected to my gluten allergy and may indicate something much worse. That's where the anxiety kicks in...

1. Do any of you experience muscle twitching?

2. If so, how long does it normally take for it to go away after exposure?

3. Do you have any vitamin deficiencies?

4. Is there anything I can do for treatment?

Thanks!

OK. I just spent 4 days in the hospital with numbness and muscle buzzing in my calves! I noticed the facial numbness especially around my lips and nose. I have Celiac was diagnosed early in December. My muscle/twitching issues were due to an electrolyte imbalance. My numbers were so low when I came to the ER the Dr. had never seen any that low. With Celiac you have a malabsorbsion problem and it can deplete the needed vitimins and minerals,etc I was low on calcium,magnesium, potassuim,etc so i was a wreck. The Dr.s feel it was due mostly to the electrolyte imbalance from the celiac disease process. they are checking other things also. I'm now seeing an Endogrinologist. If you have these tingling sensations call your DR. as soon as possible!

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I would like to second Korwyn's suggestion re: kelp... even before I realized I was gluten sensitive, kelp helped a lot with both muscle twitches and foot pain, especially the kind that is worse when you wake up in morning and are just starting to walk around... which I believe is also a hypothyroid symptom, albeit a more obscure one.

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I have the same problem, recently diagnosed, But my twitches have gotten worse since going off gluten. Did yours go away yet?

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I have yet to be diagnosed with celiac.

For years, I have been worried that I might have MS. My right hand (I'm a righty) is the worst. I experience what to me sounds like a description of carpal tunnel. I have pain and numbness in my hand, wrist and sometimes my arm, especially at night. Sometimes I get it in my left arm as well. Always seems worse when I am using the computer a lot, do yard work, etc. I get tingling and numbness in my feet and legs as well. I get lots of muscle twitching all over, but most commonly my left eye. A few months ago, my whole belly was twitching! It looked and felt like I was pregnant!!! It seriously looked like a baby moving inside my belly.

The thing is, all this started at the same time my other (probably celiac) symptoms started. I gained weight. I started getting skin rashes, etc. etc. The puzzle is coming together.

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Forgot to mention until I saw else mention the same thing...I also get numbness and tingling in my face.

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This string of posts is an encouragement to me. My celiac symptoms are almost all nerve related. It started when I had an ear infection. After the infection, my ear would feel like something was crawling around in it (sometimes a buzzing/tingling). Sometimes the feeling would go up into my temple as well. This was over a year ago. I read that it could be nerve damage so I just figured it was part of my life and moved on.

Then in late Jul '10, a buzzing appeared. The buzzing impacted a neck issue and shoulder issue that already exisited. The buzzing then shot down my spine and also settled into my hips. I couldn't sit still at the office. I was a mess. I felt like jumping up and running down the hall at any given moment. I felt that if you handed me a raw lightbulb, that I could power it by grabbing it. I work patrol and carry a Taser. I jokingly discussed with my wife the possiblity that she could tase me! I told her it might reset my electrical balance (for the record...no tasing occured).

Some folks said it was a nervous breakdown or just stress. I knew it wasn't because I could think clearly and stress in life was low.

Eventually, my face started burning like a sunburn (without the redness) about 30 min. after every meal. I started elimanating food and realized it was wheat. I visited my family doc in late Sep '10. When they set up a blood test, I asked her to toss in the gluten test. She questioned me but complied. A normal result was 0-3. I came back a 93. She referred me to a GI and he did the tube down my throat thingy and diagnosed me celiac.

I'm now 3 weeks gluten-free today. I'm starting to see some improvements...not big...but some. I'm excited! The buzzing is usually contained now to my shoulder area. The ear buzzing/tingling doesn't happen as often. The sunburn feeling in my face after meals has almost all gone away.

Based upon my reading here, I've started taking B12, D3 and a great gluten-free multi. I take around 1000 mcg B12 a day. Is this too much or not enough? Can you OD on B12?

Thanks again everyone for the thread.

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This string of posts is an encouragement to me. My celiac symptoms are almost all nerve related. It started when I had an ear infection. After the infection, my ear would feel like something was crawling around in it (sometimes a buzzing/tingling). Sometimes the feeling would go up into my temple as well. This was over a year ago. I read that it could be nerve damage so I just figured it was part of my life and moved on.

Then in late Jul '10, a buzzing appeared. The buzzing impacted a neck issue and shoulder issue that already exisited. The buzzing then shot down my spine and also settled into my hips. I couldn't sit still at the office. I was a mess. I felt like jumping up and running down the hall at any given moment. I felt that if you handed me a raw lightbulb, that I could power it by grabbing it. I work patrol and carry a Taser. I jokingly discussed with my wife the possiblity that she could tase me! I told her it might reset my electrical balance (for the record...no tasing occured).

Some folks said it was a nervous breakdown or just stress. I knew it wasn't because I could think clearly and stress in life was low.

Eventually, my face started burning like a sunburn (without the redness) about 30 min. after every meal. I started elimanating food and realized it was wheat. I visited my family doc in late Sep '10. When they set up a blood test, I asked her to toss in the gluten test. She questioned me but complied. A normal result was 0-3. I came back a 93. She referred me to a GI and he did the tube down my throat thingy and diagnosed me celiac.

I'm now 3 weeks gluten-free today. I'm starting to see some improvements...not big...but some. I'm excited! The buzzing is usually contained now to my shoulder area. The ear buzzing/tingling doesn't happen as often. The sunburn feeling in my face after meals has almost all gone away.

Based upon my reading here, I've started taking B12, D3 and a great gluten-free multi. I take around 1000 mcg B12 a day. Is this too much or not enough? Can you OD on B12?

Thanks again everyone for the thread.

Hi GuyC,

I take co-enzyme B vitamins since they are more easily absorpable--in a complex so they are balanced. I don't know about the amount to take of the sublingual B12.

However, I have just discovered that coconut oil also causes neurological symptoms for me--including sciatic nerve pain and lumps on (an old injury site) the top bones of my hips. It makes it nearly impossible to sleep--like tonight. I finally figured out I got a bit of coconut oil from snacking some gluten-free pancake my boyfriend cooked earlier today.

Allergies to other things like potatoes/tomatoes/peppers, ascorbic acid and fruit also causes eczema and nerve twitching for me.

Fortunately for me I now seem to have no adverse reaction to eating brown rice after I have thoroughly washed it--and even eggs, which I long considered a no no since they used to give me migraines. I could not eat these things at all however without a bad reaction as long as I was also eating other offending items like lemons and peppers.

So, I suggest being a bit of a sleuth to figure what does or does not bother you. Am hoping for you that the simple anti gluten diet does it, however for many of us it is more complicated than that.

Bea

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I am 12 days gluten free. On about day 5, I started getting twitching of the muscles in my body. They are mostly in my calves, feet, and thighs. Some in my abdomen. Some in my shoulder. Mostly the legs though. I never had this before going gluten free. It is easier to ignore, or less prevalent during the day. But sleeping time is the pits. I never had problems sleeping before. Now, as soon as I fall asleep, my leg muscles twitch and awaken me. My wife feels them as well. It is disconcerting, and frustrating. I'm not sure what to do. Ugh. I feel your pain.

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I used to wake up thinking there was or had been an earthquake as my bed shaked me awake.

 

One night I checked on the internet to see if there had been an earthquake in my city: no.

 

So next time I woke up feeling the bed shake, I waited quietly and I realised it was me.

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It would be nice if people that posted several years ago regarding their symptoms would come back and update their post with new info. There's a lot of people out there that would like to know if you saw improvement in your symptoms, what happened, etc.

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Has anyone who posted here had these symptoms resolve? I have Hashimotos & went gluten-free at the end of June. About 10 days in the twitching started all over, stiff hands in the morning, terrible plantar fasciitis pain in the morning, etc...I had terrible anxiety about it a few months ago & went to the er. All my basics were fine but my tsh was 10!! Thought that was it & dose of levo was raised. But these symptoms are still hanging around. I have a neuro appt in Feb but have always thought it was linked to the diet change. I never had the symptoms until going gluten-free. I started mag malate 400mg/day, a gluten-free multi with electrolytes, and already took 6,000iu vit d. Not seeing any change. Could dairy be doing this? Biggest question: anyone have this go away? 

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