Muscle Weakjness / Twitching / Neurological Symptoms?

[GoPhils]

Hello all - this is my first post on the forum. I have just been officially diagnosed with celiac disease. I took the two blood tests through my GI specialist last month, which both came back positive. Had the endoscopy a week ago and got results yesterday - confirmed celiac disease. I'm a 35yo male.

To make a long story short, I was wondering if anyone else here had neurological symptoms accompanying their disease. I've had the bowel and fatigue issues which seem common among many sufferers. They really started flaring up late last year. Around the same time, I started getting muscle twitches all over, but concentrated in my left leg, with some accompanying muscle soreness, mild muscle fatigue, etc., again, all in the left leg but nowhere else.

I was paranoid about MS and ALS, and saw a neurologist two months ago (pre-celiac diagnosis) who said he didn't see anything serious.

Could my celiac disease explain these symptoms? Does anyone else have the localized weakness/soreness like I do? It seems from what I have read on these forums that the neurological symptoms that accompany celiac seem to be spread all over, as opposed to localized?

Many thanks for any feedback!

[DonaldandAlanda Evans]

I get symptoms in both legs, but only in one arm.

[bittykitty]

I get symptoms in both legs, but only in one arm.

i lose some fine motor skills, and have numbness in my left arm and leg.To quote my doctor when I emailed him in a panic-

"I think the tingling is a "flight or fight" reaction to the gut symptoms, or possibly a lowering of BP due to the gut effect."

[nyctexangal]

Yes, I get muscle pain, numbness, and tingling in my arms and legs, mostly left side.

Click on my profile and you can go to my little video/website blog- I just did a video post as to why this can happen since I'm dealing with right now. Hope you get to feeling better so soon!

[Bobbijo6681]

I had severe pain in both of my feet, and my right arm. I also got a terrible eye twitch in my right eye....made it very difficult to drive when that sprung on me at the worst moment. That is what led me to see a rhumetalogist and she ran the celiac panel just because she couldn't find anything else to explain the pain. I thought she was full of you know what, but as it turns out she was a pretty smart doc. Stick with the diet and most of those symptoms will go away, at least they did for me!

[LDJofDenver]

I had a whole host of neurological problems, which we now know were related to undiagnosed celiac disease. Many have gone away completely (I'm at about 2+ years since diagnosis). Roving pins and needles, muscle pain, numbness, ataxia. As explained to me, these are the result many years (decades, for me) of intestinal damage and not absorbing vitamins and nutrients -- especially B12, and Vitamin D.

Pre-diagnosis I was also evaluated for MS. Thankfully it wasn't that and now we know what it is.

Definitely look into supplements, my GI doc and nutritionist recommended sublingual B12 (Methylcobalamin). If your Vit. D levels haven't been checked, that would be worthwhile. I ended up having to take prescription dose Vit D, once a week.

Hang in there. It's a bit of a process, but you're on your way to healing now.

[jerseyangel]

I had neuro issues that went away gradually after I went gluten-free. In the months before I was diagnosed, I had an "altered feeling" in my left arm. It was constant and somewhere between numb and asleep (the best I can describe it).

For the better part of a year, that's all, and then other things began happening--I would get numbness in my face (left side), tingling and numbness in my calves and feet, feelings of burning from the inside on my feet and inside my mouth. I would get odd twitches in my left hand and fingers.

I would ask your doctor, if you haven't already, for a blood test to check your vitamin levels. Last month, after 5 years gluten-free, I was still low on vitamin D despite having supplemented with it for the last few years.

Take heart, it should fade away as soon as you are on the diet for a while.

[lele123]

Some biological dentists think that silver fillings that contain mercury are related to some neurological diseases. And I highly suspect it contributes to digestive problems. I am finally getting my amalgams removed after having a mouthful of mercury for years. They will be replaced by metal free composites.

[masterjen]

I've had migraines lasting 2-5 hours, as well as less severe, 6+ hour-long headaches every 2nd or 3rd day. In addition, I've had bouts of muscle weakness (unrelated to being hungry), muscle tremors even with minor physical exertion, decreased visual acuity, difficulty focusing/concentrating, memory difficulties, balance difficulties, problems with fine motor control (and less so with gross motor control), and reduced kinesthetic and tactile sensitivity. I've been on the wait-list to see a neurologist for 6 weeks . . .

[Lgood22573]

Yes, and I also was tested for everything under the sun including MS. Since going gluten free, my strange "symptoms" have stopped.

[Hillary]

I had severe pain in my right leg and muscle twitches all over my body. I also had numbness and tingling in my face, hands and feet. I had balance problems and weakness where I could barely walk or stand in the shower. I was tested for MS and ALS, but all came back negative. I still don't have a diagnosis but have been gluten free for 4 months and all of the above symptoms have improved or gone away. It did get worse before it got better and I thought I was going crazy, but compared to a year ago things are great. Hang in there and read a lot here. This forum has helped me so much.

Thank you everyone,

Hillary

[Traveller]

Last month The Lancet had an interesting article entitled From Gut to Brain". That article said it is now commonly accepted not only that Celiac has neuological manifestations, but also that the only effect of Celiac may be neurological -- no villi damage required. They also discussed a test neurologists could use to gain insight into whether gluten is causing neurological issues.

[k2626]

I am happy to read this. I have had stabbing, stinging migratory pains, muscle twitching ALL over, extreme joint cracking (at its worst hundreds per day with the twitching and cracks), have had "gerd" for 3 yrs

I have been tested for MS, ALS, you name it--had scans etc...

My labs do not show celiac though so I am not sure if this is the reason behind it but feel I have exhausted everythign it could be.

[MANDOPICKER7]

I have celiac and had for a while just found out last year My problem is my feet twitch and keep me up, i put a heat pad on feet to help,i try to stay on the diet, is there any relief from that,any thing you can take?

[Takala]

You have to stay on the diet and not cheat if you want the neuro symptoms to go away.

I had many neurological symptoms for years which doctors always said indicated I probably had MS, but then the tests would come back negative and they would tell me it was either due to nerve impingement in my C spine from arthritis, or that I was a head case.

To make a long story short, when they did a brain scan and it showed I had the bright spots, and the nasty, idiotic neuro doctor STILL did not believe me, I self diagnosed based on response to diet and a lot of research. IF ONLY I had had a hidden camera on my during that last appointment, and the appointment the year before with a different neuro. They could be used as training tools as what not to do when a patient recites all the symptoms.

[tshannon0605]

Hello all - this is my first post on the forum. I have just been officially diagnosed with celiac disease. I took the two blood tests through my GI specialist last month, which both came back positive. Had the endoscopy a week ago and got results yesterday - confirmed celiac disease. I'm a 35yo male.

To make a long story short, I was wondering if anyone else here had neurological symptoms accompanying their disease. I've had the bowel and fatigue issues which seem common among many sufferers. They really started flaring up late last year. Around the same time, I started getting muscle twitches all over, but concentrated in my left leg, with some accompanying muscle soreness, mild muscle fatigue, etc., again, all in the left leg but nowhere else.

I was paranoid about MS and ALS, and saw a neurologist two months ago (pre-celiac diagnosis) who said he didn't see anything serious.

Could my celiac disease explain these symptoms? Does anyone else have the localized weakness/soreness like I do? It seems from what I have read on these forums that the neurological symptoms that accompany celiac seem to be spread all over, as opposed to localized?

Many thanks for any feedback!

I get these symptoms constantly - from my fingers to my arm muscles. The neurological symptoms are what started this whole cascade of tests that eventually lead to my celiac diagnosis. I had tightness, cramping and twitching in my leg muscles. This was so bad at times that it woke me up in the middle of the night.

[Korwyn]

I had many neuro, cns, and psych issues. Some of them actually got worse for a while after going gluten-free which was quite scary, and it has been over a year now. They are all not totally cleared up (some are, some aren't) but they are still improving. Almost all of mine were related to either additional intolerances (soy, casein) or nutritional deficiencies. Since celiac disease is a disease causing malabsorption, I would suggest you ask your doc for a complete blood panel, including trace minerals, and all vitamins. I have to have my blood work done every 3 months. This last time my iron was finally away from the 'almost anemic' end of the scale, and my sodium, and B12, B6, and K were 'normal'. My D3 is still low though. I'm taking 56,000 IU of D3 a week now.

[T.H.]

I have had localized neurological symptoms, on my left side primarily, too, curiously enough. No twitching, just pain, weakness, etc...

However, I do know that MS and celiac disease can often be found together - once diagnosed for one, you're in a higher risk category to get the other (along with hashimoto's disease, diabetes, and hypothyroidism) and MS is best treated if you can get diagnosed early, before all the major damage is done. Did the Neurologist give you any tests like a catscan or MRI? If not, I would ask for the one that positively detects MS.

Hello all - this is my first post on the forum. I have just been officially diagnosed with celiac disease. I took the two blood tests through my GI specialist last month, which both came back positive. Had the endoscopy a week ago and got results yesterday - confirmed celiac disease. I'm a 35yo male.

To make a long story short, I was wondering if anyone else here had neurological symptoms accompanying their disease. I've had the bowel and fatigue issues which seem common among many sufferers. They really started flaring up late last year. Around the same time, I started getting muscle twitches all over, but concentrated in my left leg, with some accompanying muscle soreness, mild muscle fatigue, etc., again, all in the left leg but nowhere else.

I was paranoid about MS and ALS, and saw a neurologist two months ago (pre-celiac diagnosis) who said he didn't see anything serious.

Could my celiac disease explain these symptoms? Does anyone else have the localized weakness/soreness like I do? It seems from what I have read on these forums that the neurological symptoms that accompany celiac seem to be spread all over, as opposed to localized?

Many thanks for any feedback!

[jackay]

Some biological dentists think that silver fillings that contain mercury are related to some neurological diseases. And I highly suspect it contributes to digestive problems. I am finally getting my amalgams removed after having a mouthful of mercury for years. They will be replaced by metal free composites.

I definitely agree that is the cause of many health problems. I have a mouth full of them and don't have the money to replace them. My dentist says that they don't cause health problems but my guess is that he doesn't have any himself.

[one more mile]

my muscle twitching gets better with Calcium, citrate pulse D with magnesium taken at bed time.

[lucia]

What you describe is called peripheral neuropathy. It is commonly associated with Celiac/gluten intolerance. You can google "celiac" and "peripheral neuropathy" and read all about this association.

[maxichi37]

I though all this was because of my Cerebral Palsy.

I wonder if it wasn't a combo hit on me now though.

[dancer5678]

Hello,

My brother was diagnosed with celiac disease one year ago. He was suffering from all the GI symptoms and is finally feeling much improved after being gluten-free for one year. My parents and I all had the genetic testing and it came back that my dad, brother and I all have the DQ8 link and its positive. They told me that I have a high potential for developing celiac.

For the past 9 months or so, I have felt horrible. My symptoms include back aches, burning pains in my low back and knees, shooting pains all over, light headed, periods of vertigo, blurred vision, pain in my eyes, tingling in my feet and calves (mostly left side), Muscle twitching all over, and heart palpitations. I also have rippled finger and toe nails.

I have been tested for everything under the sun, such as MS, and I have had every possible MRI done. I have had lots of blood work and also the celiac blood work. My blood work came back negative for celiac but my IG levels were all extremely low, and I never had low IG levels before in my life. (I am currently 20 years old)The dr. told me that can happen when your IG levels are very low the celiac blood work will throw false negatives. He told me to stick to a strict gluten free diet. My next step is to see a GI doctor.

I have been gluten free for 13 days now and feel hardly any improvement. The only thing I have noticed is the heart palpitations have stopped. The last few days I feel that the symptoms are almost worse.

I was wondering how long it takes too feel better after going gluten free having neurological problems? My brother felt better improvements instantly with his GI symptoms. If anyone can relate to this or has any input please reply!!!

Thank you!

[kareng]

Hello,

My brother was diagnosed with celiac disease one year ago. He was suffering from all the GI symptoms and is finally feeling much improved after being gluten-free for one year. My parents and I all had the genetic testing and it came back that my dad, brother and I all have the DQ8 link and its positive. They told me that I have a high potential for developing celiac.

For the past 9 months or so, I have felt horrible. My symptoms include back aches, burning pains in my low back and knees, shooting pains all over, light headed, periods of vertigo, blurred vision, pain in my eyes, tingling in my feet and calves (mostly left side), Muscle twitching all over, and heart palpitations. I also have rippled finger and toe nails.

I have been tested for everything under the sun, such as MS, and I have had every possible MRI done. I have had lots of blood work and also the celiac blood work. My blood work came back negative for celiac but my IG levels were all extremely low, and I never had low IG levels before in my life. (I am currently 20 years old)The dr. told me that can happen when your IG levels are very low the celiac blood work will throw false negatives. He told me to stick to a strict gluten free diet. My next step is to see a GI doctor.

I have been gluten free for 13 days now and feel hardly any improvement. The only thing I have noticed is the heart palpitations have stopped. The last few days I feel that the symptoms are almost worse.

I was wondering how long it takes too feel better after going gluten free having neurological problems? My brother felt better improvements instantly with his GI symptoms. If anyone can relate to this or has any input please reply!!!

Thank you!

Did they test for your iron, B12, D, Potassium, Calcium levels? Some of those things can be caused by not enough vitamins. Celiac makes it hard to digest vitamins so taking extra for a while can be helpful.

[precious831]

I have these symptoms. Ranges from tingling to pain in my arms, my joints also hurt(and swell) like I have the worst flu ever. I get severe headaches too when glutened, among other symptoms.