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Muscle Twitching


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#1 SirSleepie

 
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Posted 06 December 2009 - 06:32 PM

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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#2 Wolicki

 
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Posted 06 December 2009 - 07:07 PM

Two things: Your B12 level is technically normal, but I had the buzzing at 570. Try some sublingual B12, 2000 mcg per day, taken at bedtime. Also, the twitching can come from iron deficiency. Have you had your ferritin checked?

I've been on b12 and iron for 3 months, and it's gotten much better. The tingling is almost gone (and it was from head to foot!) and the twitchies are almost gone. I hope that helps!
Janie
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Gluten free is not so bad! If you are new, hang it there, it gets easier!

#3 srthomas21

 
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Posted 06 December 2009 - 08:15 PM

Hi

I had this same thing as well. I've been gluten free now for 6 months and the twitching is now about gone but it took MONTHS for it to go away.

You are probably deficient in vitamins and minerals. I started taking a gluten free multi vitamin about 5 weeks ago and it has slowly improved things. The one I take is called Bio-35 .

http://www.bio35.com...ails.asp?pID=45

You can get a free trial of it at the link above. I have been pretty strict on taking it 3 times a day and it has helped restore my vitamin levels.

It's amazing what Celiac can do to your body. I was also iron deficient and took iron supplements for a few months as well to get my iron back up.

I also didn't have the gastro symptoms . My symptoms were strictly neurological and they sucked. I thought I had MS or something worse. My anxiety was unbearable at one point (i've never had anxiety in the past either) I think its a pretty safe bet that you haven't been absorbing the proper nutrients for quite awhile and its going to take some time to resolve.

I would recommend taking a good probiotic as well to facilitate healing your gut. Even though you did not have gastro issues your small intestine is likely inflamed. A good cheap probiotic I use is called PB-8.

All I can tell you is that it does get better but it can take 6 months to a year for things to heal up. I had the calve pain as well and still do even after 6 months but it has slowly getting better.

Hope that helps, let me know if you have any other questions as it seems we share a lot of the same miserable symptoms.

Scott
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#4 CGally81

 
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Posted 06 December 2009 - 08:55 PM

I had muscle twitching as one of my gluten withdrawal side effects. It started to occur, then got worse and worse, then slowly started to get better, with relapses along the way. Now it rarely happens.

I didn't turn out deficient for nutrients, but I still echo what everyone else says: get your nutrient levels checked, and take what you're missing. Also, note that this may be a withdrawal symptom, and it'll go away over time. It might, like in my case, get worse before it gets better. But it'll still go away. Make sure you're taking enough nutrients in the meantime to get those back up to normal levels.
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Born 1981. Is also autistic - officially diagnosed.
Started having fructose-related problems in late 2008.
Started noticing gluten-related symptoms around March 2009.
Discovered the problem and went (mostly) gluten-free in early August 2009. Promptly became hungry all the time.
I can tolerate fructose again now.
Went dairy-lite in mid December 2009, then casein-free in early January 2010. Hunger shot up again twice.
Hunger apparently mostly normal in mid February 2010.
Started taking fish oil in July 2010, then got new symptoms. Got different new symptoms when I stopped, and hunger shot up AGAIN.

#5 Ahorsesoul

 
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Posted 07 December 2009 - 08:05 AM

Remember that lab results that are normal may not be your normal. Lab results are an average: some people are higher, some lower for their normal.

My B12 and thyroid lab results were always in the normal range. Not until I found a doctor who told me that yea they were normal but low normal. Since I had symptoms of low B12 and thyroid I should be taking extra. Made a world of difference for me. Sometimes doctors forget to consider the whole patient and just look at lab values.

You will do find on a gluten free diet. You've already began the research. You can do this.
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1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#6 SirSleepie

 
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Posted 08 December 2009 - 02:52 PM

Thank you all for responding. I appreciate the words of advice.

Is there anyone else out there who has muscle twitching (fasiculations) as a symptom of Celiac disease? I would feel more comfortable if more of you would come forward. It would help curve my skepticism. If muscle twitching is indeed a symptom of Celiac disease others must have experienced this.

Scott - How long have you been twitching? Have any of your doctors explained that this is consistent with celiac disease?

Thanks!
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#7 jenngolightly

 
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Posted 08 December 2009 - 03:01 PM

I had/have muscle twitching. Before the celiac diagnosis, I was suspected to have MS, but neurologist ruled that out. My twitching only reappears when I accidentally get glutened.
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Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#8 SirSleepie

 
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Posted 08 December 2009 - 03:46 PM

Jenngolightly - Thank you for responding. How long did it take for your muscle twitching to go away after you went gluten-free? Were you B12 deficient?

Thanks!
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#9 SirSleepie

 
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Posted 09 December 2009 - 07:46 PM

>
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#10 srthomas21

 
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Posted 10 December 2009 - 04:39 PM

What type of muscle twitching do you have? What part of your body?

How bad is your anxiety? When my anxiety was at its worst my muscles were twitching all over the place.

Celiac can cause all sort of weird symptoms. I wouldn't worry too much about it. Give it some time, takes some good vitamins and wait it out. It will get better.
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#11 Korwyn

 
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Posted 10 December 2009 - 09:27 PM

Thank you all for responding. I appreciate the words of advice.

Is there anyone else out there who has muscle twitching (fasiculations) as a symptom of Celiac disease? I would feel more comfortable if more of you would come forward. It would help curve my skepticism. If muscle twitching is indeed a symptom of Celiac disease others must have experienced this.

Scott - How long have you been twitching? Have any of your doctors explained that this is consistent with celiac disease?

Thanks!


Hi Sleepie,

I developed severe muscle twitching and myoclonus, and it is indeed related to gluten for me as well as soy. I have been strictly gluten-free since April 2009, and soy and casein free since May 2009. I have a number of neuromuscular and CNS issues triggered by both gluten and soy. The peripheral neuropathy is not strictly related to a vitamin deficiency for me, nor are the fasiculations and myoclonus. If I take in soy I develop clearly visible muscle twitching over various portions of my body, as well as panic attacks, and night sweats. Eliminating gluten helped quite a bit, but eliminating soy was the big link. In the course of my celiac disease I developed a severe intolerance to soy, refined sugars (sucrose, corn syrup), starchy carbs, and casein.

They have decreased tremendously, but sugars and starchy carbs, soy will trigger it. And it takes days to subside to previous levels. Raw veggie/unrefined carbs are ok, grain carbs will stir it up if eaten over several days or in large quantites. Soy in any amount (even soy lecithin in chocolate or Blue Diamond Almond milk) will trigger it. Gluten will trigger it as well, but not as severe and it subsides quickly (not over days).

A few weeks ago I was so excited because I realized I had two full days with no incidents!!! :)

Korwyn
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#12 SirSleepie

 
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Posted 14 December 2009 - 06:18 AM

Srthomas21 - Muscle fibers dance about. Pulsating movements... Twitches/Fasiculations. Really don't know how else to describe them. Sorry. Mostly occurs in my calves. Also happens a lot in my feet. I have pain and stiffness in my calves as well. Anxiety is horrible.

I've been gluten free for 19 days now. I noticed significant improvement on Friday & Saturday (The best I've been in a while). I took a few steps back on Sunday and now I appear to be right back where I started. Very frustrating.

Thanks for the feedback and the support.
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#13 Jean'sBrainonGluten

 
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Posted 14 December 2009 - 12:31 PM

Hi SirSleepie,

I have had myoclonus and symptoms that looked like a brain tumor but when I got a brain scan it showed nonspecific spots. Because I'm over 50 they were classified as microvascular ischemic changes but I'm pretty sure they're celiac white matter lesions. If you do a google search there are several papers on them available for a charge over the web. In some cases the symptoms look like epilepsy, in others dementia, MLS (Lou Gehrig's disease), or MS. There are before and after photos showing that the lesions are better after 9 months and nearly gone after two years on a gluten free diet.

For me I did an elimination diet 7 or 8 years ago and I found that I felt better after two weeks gluten free and the improvements continued as I was off gluten longer. My downfall was that I was getting gluten exposure through several hidden sources - probably most meats at restaurants are coated in flour before grilling to reduce sticking, lots of meats have vegetable broth added for 'flavor' and that can have gluten. I'm also looking at meds I've been taking, working to avoid cross-contamination from my family's gluten-containing foods, and even toiletries like shampoo. I would encourage you to be as meticulous as possible in reducing your exposure to gluten since even tiny amounts can continue to provoke an immune response (you may also want to do a search on gluten and gliadin cross reactivity with brain proteins).

In England there are more people researching brain complications of celiac. Here is a link about one group's research

http://cme.medscape....warticle/462205

but the researcher Hadjivassiliou has done tons of research on how gluten sensitivity affects neural issues. I wish there was more discussion of this in the celiac community.
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#14 Ahorsesoul

 
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Posted 14 December 2009 - 02:50 PM

Srthomas21 - Muscle fibers dance about. Pulsating movements... Twitches/Fasiculations. Really don't know how else to describe them.


You might try adding potassium as a supplement or eat a banana daily.

Mayo clinic doctor (not celiac related) told one of my family member to take a Benadryl every night for a few days and it might help leg cramps. This might work for your muscle problems. Wouldn't hurt to try.

I use to have some muscle twitches. I couldn't say if it was going gluten free or that I started B12 shots that helped. If I have leg problems, potassium helps me now.
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1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#15 SGWhiskers

 
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Posted 14 December 2009 - 03:14 PM

Muscle twitches here too at 16 months. Pre diagnosis, they were unpredictable and scary. Now, they have primarily moved to my extremities and/or areas I am working on with trigger point therapy. They tend to head to my face and abdomen more and be more persistant when I'm fatigued.

Now, just because a lot of us have them does not mean it is something you should ignore. Best wishes.
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