Severe Muscle Weakness. Unknown Cause.

[mark6556]

Hoping someone out there may have experienced similar things and can point me in the right direction. I was diagnosed with Celiac back in July 2009. I had very bad blunted villi. Started losing weight(8-10%) after going gluten free and after a few months my weight stabilized and more recently has begun creeping upward. Repeat biopsy taken 1 month ago showed almost normal villi. I appear to have resolved the Celiac issues through a very very strict adherance to the gluten free diet although some foods still cause excess gas.

Where the problem comes in: Going gluten free appears to have kicked off problems with minor numbness/tingling in the extremeties and very bad muscle weakness in the arms & legs. The muscle weakness has been getting progressively worse for months and is reaching terrible levels. Simple things now stress out my muscles and my muscles now are sore from such simple things as washing a few pots and pans or basic cleaning up around the house. My muscles are starting to feel sore all the time no matter how much I rest. I've had my ferritin levels checked, vit D, vit b-12... all these are fine. The typical rheumatological blood items like SED rate, and CK levels are normal. I've had my thyroid checked multiple times, everything is normal. I'm at a loss for a diagnosis beyond the celiac diagnosis. My standard blood work I have done often is all normal except for high iron serum which seems to be steadily increasing so far (last measured at 165ug/dL). My total bilirubin is elevated(2-3 mg/dL) but I've had that all my life and well before I've had health problems. I don't believe this scenario fits hemochromatosis well.... Has anyone else encountered similar symptoms? And if so, did you ever determine a second diagnosis for the muscle weakness? What else could it be?

thanks

[roxnhead]

Hello,

I also have had severe muscle weakness so much so that my nuero was thinking myasthenia gravis(negative blood test). What I did find out is that is caused by carbohydrates which just sounds crazy I know. We still haven't figured out why? It appears to be very unusual.So if I stay no-low carb I can have muscle strength. If I eat carbs my muscles are mush, stair-climbing any activity that is repetitve-sweeping, raking. My parathesia in my legs and feet are much better now too. especially restless legs. Celiacs appear to be deficient in Vitamin D and B-12 of which I am and take large doses. I would always get a copy of your lab request and report and research yourself, there are alot of discrepancies of lab values out there. What was fine with my G.I. was very low noted by Naturopath. Good Luck and be well!

[RiceGuy]

You're not alone with the symptoms you are experiencing. But fortunately, you can safely try most nutritional supplements without fear of overdose, even if your levels are "normal". The two which helped me with the symptoms you describe are vitamin B12, and magnesium. For the B12, I'd recommend a methylcobalamin sublingual tablet (not a liquid). There are many different types of magnesium available, and most of the common ones have their usefulness for various problems. Magnesium citrate is often said to be well-absorbed, and you can get it in powdered form, which makes it easy to add to fruit juice or a smoothie. It has a citrus taste, so it works best with orange or other citrus juices. Or there are magnesium tablets and capsules too of course.

I've read that the body will rob B12 from organs and tissues in order to keep blood levels up. So in that case a blood test for B12 wouldn't reveal a deficiency until very late.

You can also get a good strong co-enzyme B-complex, and a multivitamin too. Many including myself find these helpful too, and report feeling better regardless of what blood tests say. Again, it won't hurt even if your levels are supposedly normal. You'd have to really take handfuls to overdose. And vitamin B12 has no known level of overdose, so you can take all you want. For magnesium, if you overdo it, loose stools is usually the indicator.

Last but not least, try avoiding all nightshades (potatoes, tomatoes, peppers, eggplant, etc). Those things would really have me in horrible pain.

[Lynayah]

What was your vitamin D level? Was it over 50?

Make very sure that the doctor who tests you for vitamin D really knows what he/she is doing. I had similar symptoms, figured I was okay and ignored it.

It wasn't until my joints started swelling that I finally went to a good Rhumatologist. I thought perhaps the chronic fatigue, body aches and weakness were rhumatoid arthritis.

He sent my blood work to Mayo Clinic for a more complete diagnosis, it came back that, by that time, I had very little D in my body.

I was so weak, I couldn't even carry a tiny wallet purse that weighed practically nothing.

The fatigue I felt was a fatigue that is almost impossible to describe. The only way I can describe it -- it's like the tiredness I felt when I was pregnant, only 1,000 times more intense. I was so very sick.

Turned out the joint swelling was from lack of D, too.

He prescribed mega-doses (very important not to take them without professional supervision), which led to my feeling better.

Now hear this: He missed my gluten-intolerance, though. He tested me for celiac and when it came back negative, he said I didn't have it. BUT HE didn't read the gliadin when he did the celiac bloodwork.

Turns out that, even though I don't have celiac, I have acute gluten-intolerance, which is probably what caused my body to be drained for vitamin D, and goodness knows what other nutrients. Even though I don't have celiac, I had malabsorption issues -- nasty ones.

Thank goodness, University of Chicago Celac Center figured that one out!

Anyway, it pays to get second opinions!

[Lynayah]

Here is a link you might find useful:

Open Original Shared Link

[georgie]

Myasthenia Gravis ? It is very hard to diagnose if you are one of the ones that has negative blood tests and EMGs. ie seronegative MG. Have you tried keeping a diary of when your muscles are weak, if they improve with rest etc. It is so hard to dx MG that many people can take years and have multiple Neuros. There are some new genetic tests coming out of Mayo that may be helpful. Do you have problems chewing, swallowing, breathing ? Eyelids, jaw weakness at dentist, climbing stairs ?

[Rebecca's mom]

I've been gluten-free since April, 2008, and went to see an ocular plastic surgeon today, because my right eyelid has started to droop. I was *this* close to getting an eyelid lift covered by my insurance when she said that she needed to do one more test, "Just to be sure".

Well, wouldn't you know it, I "failed" that test, and now I have an appointment in May to see a neurologist to be tested for Myasthenia Gravis. And now that I have started reading about it, I am realizing that I have been having several of the symptoms associated with it over the past few months - all of which I attributed to either age or weight or both.

I had been feeling so GOOD after going gluten-free, and then the past couple of months I started feeling really lousy. I guess it would be good to have a definitive diagnosis, but I was thinking that all of my little health problems were behind me. I guess it could be a LOT worse....

[mark6556]

Roxnhead, thanks for your reply. You problem seems to align pretty well with mine. Can you tell me more about your new diet? The most obvious carbs are from pasta, grains, and bread. But white potatoes, dried fruits, and other vegetables can contain high carb contents. How strict did you go? Also, did your muscle weakness start after going gluten free or was it present prior to that?

I recently fasted 1 week on water only and altered my diet to a more vegetarian/raw type diet following that. The fast didn't address the muscle weakness/fatigue whatsoever. My diet change has put my CBC blood profile completely in-line but the muscle weakness and fatigue is still unchanged. I debate whether a longer fast may help as I fasted until my fat reserves were depleted(I'm thin so it didn't take long at all). Longer fasting would cause more muscle tissue to be torn down and rebuilt during recovery. Whether this will help is unknown but I'm targeting another attempt this fall/winter.

I have seen a neurologist(actually two of them now), both suggested myasthenia gravis also. But the blood test came back negative. I tend to think this is just the latest new medical diagnosis that all the doctors are trying to apply in real life but like many conditions... its just a general box of symptoms thats not all that well understood.

Georgie, rest always improves the fatigue/muscle weakness. I also had the EMG test and the one where they stick an electrode in the muscle... Everything was found to be normal. The weakness is most noticeable in my arms but I believe it affects most muscle groups. I think you notice it more in the muscles you use the most. No issues with chewing, eye lid muscles or any of that. Stair climbings effects are definitely noticeable, especially if I have been active, if I rest, its less of an issue.

Also I am adjusting my diet to include mostly alkaline forming foods. This is theorized to help build up various minerals in the body like magnesium, calcium and others without resorting to supplements. From what I've seen, if you go to a vegetarian type diet, you are for the most part doing this. Haven't done it long enough to know if it makes a difference. I've tried vitamins before and didn't find it did much of anything.

[stef-the-kicking-cuty]

Wow, I have to do some research on this myself. I also have the drooping eye lid. It's also on the right side. Of course, everytime you go to the doctor, it's not there, so they think, you're making this up. I also have muscle weakness to a certain degree. The last few years before I received my diagnosis the muscle weakness was really bad. Then it disappeared for a while, as well as the dropping eye lid. The last 6 months or so both is back and I have no idea, what I'm doing wrong. Just thought, I'd mention...

[curiousgirl]

Roxnhead, thanks for your reply. You problem seems to align pretty well with mine. Can you tell me more about your new diet? The most obvious carbs are from pasta, grains, and bread. But white potatoes, dried fruits, and other vegetables can contain high carb contents. How strict did you go? Also, did your muscle weakness start after going gluten free or was it present prior to that?

I recently fasted 1 week on water only and altered my diet to a more vegetarian/raw type diet following that. The fast didn't address the muscle weakness/fatigue whatsoever. My diet change has put my CBC blood profile completely in-line but the muscle weakness and fatigue is still unchanged. I debate whether a longer fast may help as I fasted until my fat reserves were depleted(I'm thin so it didn't take long at all). Longer fasting would cause more muscle tissue to be torn down and rebuilt during recovery. Whether this will help is unknown but I'm targeting another attempt this fall/winter.

I have seen a neurologist(actually two of them now), both suggested myasthenia gravis also. But the blood test came back negative. I tend to think this is just the latest new medical diagnosis that all the doctors are trying to apply in real life but like many conditions... its just a general box of symptoms thats not all that well understood.

Georgie, rest always improves the fatigue/muscle weakness. I also had the EMG test and the one where they stick an electrode in the muscle... Everything was found to be normal. The weakness is most noticeable in my arms but I believe it affects most muscle groups. I think you notice it more in the muscles you use the most. No issues with chewing, eye lid muscles or any of that. Stair climbings effects are definitely noticeable, especially if I have been active, if I rest, its less of an issue.

Also I am adjusting my diet to include mostly alkaline forming foods. This is theorized to help build up various minerals in the body like magnesium, calcium and others without resorting to supplements. From what I've seen, if you go to a vegetarian type diet, you are for the most part doing this. Haven't done it long enough to know if it makes a difference. I've tried vitamins before and didn't find it did much of anything.

When you talk about muscle weakness, are your muscles atrophied?

[georgie]

Myasthenia Gravis can be extremely difficult to diagnose if you are seronegative ( all tests show negative). Some people never get the dx. Often the Dr never sees you at your worst. Even after 20 years and 10 different Neurologists and Hospitals some people do not have a clear answer. Genetic testing is moving ahead in leaps and bounds so maybe check into that. Some variants are now able to be screened that way. The MG website says this and it says it so well.

What Is Myasthenia Gravis?

Myasthenia Gravis is an auto-immune disease which is characterized by fluctuating, sometimes fatal, muscle weakness.

The body's immune system, in the form of antibodies, attacks and damages the nerve signal reception areas on the muscles - causing a breakdown in communication between nerve and muscle; this results in a loss of effectiveness of the muscle. What Does This Mean?

To someone affected by Myasthenia Gravis it means that symptoms vary according to the amount of activity undergone, the onset of infection or stress of any kind. As a result diagnosis by a GP is extremely difficult. Also family and friends need a great deal of understanding to come to terms with a relative or friend who seems perfectly normal one moment, and a few hours, or even minutes later is droopy and listless. Activities taken for granted by most of us become difficult or even impossible at times for myasthenics. Simple things like eating food, lifting arms, speaking to friends or laughing.

Open Original Shared Link

[kellykay]

Sorry think this is a bit of an old thread.... but I am currently waiting to be seen by a MG specialist.. they don't think I have MG but need to rule out another condition that affects the neuromuscular junction as well.. the type of weakness is alittle more consistent as well as progressive.. (Lambert Eaton Syndrome) which even rarer the MG and even harder to dx....

I have been battling progressive weakness for over five yrs now... I have had dozens of emgs ( that show alittle something??!!) but my muscle biopsy was normal

I even had the neuromuscular specialist at the time try and send me to a shrink.. he thought it was all in my head....

I have been tested for everything under the sun even had the blood work for celiac and lyme disease you name it.. I do have Sjogrens Syndrome but they tell me that my weakness isn't related.

Low and behold I was at the Canadian conference for sjogrens and they were talking about a connection between Sjogrens and Celiac..I have been told I have IBS and when I was given steriods my problems went away.. so I thought I had more of a IBD... but after coming to this site I have learned that steroids help celiac and the blood testing isn't reliable

I took it upon myself to go gluten free because I have always known I cant tolerate wheat well.. and I have gotten alot better but there is so much wheat contamination in this house I feel like I am fighting an uphill battle... My weakness seemed to stablize a bit but not for long maybe the little bits of gluten I am getting....

My dilemna is... do I go back to eating gluten to get tested via biopsy.. do I really need to know that this is the issue... If I am strict enough with the diet will my weakness get better..... I had read somewhere that Celiac itself will cause severe weakness... in rare cases...

I guess I am looking for a miracle.. I can't understand how someone could have such severe weakness and the drs cant figure it out... its nice to know I am not alone here but still the whole thing is fustruating

[georgie]

Steroids also help MG. Seronegative MG is just that - all tests negative. It is 'very' frustrating. People can take years and years to find a Dr that listens. Can you get a trial of Mestinon ? That may help. Have you had any tests for Congentital Myasthenia Syndrome ? CMS. The genetic tests are coming all the time. DOK7 is one of the latest.

If your breathing is affected - have you had any respiratory tests. The UK MG Assoc is working at getting the respiratory tests linked to MG results. There appears to be new data re that. The CO2 stats and O2 stats and the sleep apnoeas etc - all show a pattern.

Most Neuros are off the planet slow re MG . Have you joined a MG Assoc - and compared notes. You will not feel so alone and puzzled then. Open Original Shared Link

Another forum Open Original Shared Link

Sorry think this is a bit of an old thread.... but I am currently waiting to be seen by a MG specialist.. they don't think I have MG but need to rule out another condition that affects the neuromuscular junction as well.. the type of weakness is alittle more consistent as well as progressive.. (Lambert Eaton Syndrome) which even rarer the MG and even harder to dx....

I have been battling progressive weakness for over five yrs now... I have had dozens of emgs ( that show alittle something??!!) but my muscle biopsy was normal

I even had the neuromuscular specialist at the time try and send me to a shrink.. he thought it was all in my head....

I have been tested for everything under the sun even had the blood work for celiac and lyme disease you name it.. I do have Sjogrens Syndrome but they tell me that my weakness isn't related.

Low and behold I was at the Canadian conference for sjogrens and they were talking about a connection between Sjogrens and Celiac..I have been told I have IBS and when I was given steriods my problems went away.. so I thought I had more of a IBD... but after coming to this site I have learned that steroids help celiac and the blood testing isn't reliable

I took it upon myself to go gluten free because I have always known I cant tolerate wheat well.. and I have gotten alot better but there is so much wheat contamination in this house I feel like I am fighting an uphill battle... My weakness seemed to stablize a bit but not for long maybe the little bits of gluten I am getting....

My dilemna is... do I go back to eating gluten to get tested via biopsy.. do I really need to know that this is the issue... If I am strict enough with the diet will my weakness get better..... I had read somewhere that Celiac itself will cause severe weakness... in rare cases...

I guess I am looking for a miracle.. I can't understand how someone could have such severe weakness and the drs cant figure it out... its nice to know I am not alone here but still the whole thing is fustruating

[mark6556]

When you talk about muscle weakness, are your muscles atrophied?

No, I don't think my muscles have atrophied. I have strength and can lift heavy things. I am easily tired and my arms and legs feel heavy at times due to activity. My muscles look normal, they are not shrunk or anything like that.

[up late]

I had a similar problem, unexplained weakness and tingling like you described and carb intolerance (not just weakness but also fluid and tingling after eating carbs). I recently had some kind of attack and now I've got more symptoms (I posted on it in it's own thread if anyone wants to look it up in my posting history)

I found low carb helped at first, (especially low starch and low sugar including fruit, I couldn't even eat the amount of carbs they wanted me to for the glucose tolerance test for diabetes) but now it's more not eating large meals helps so I don't know, maybe it's the energy to digest rather than what I'm digesting. If I eat I feel sick, if I don't eat I eventually feel sicker and don't bounce back, if I eat a little frequently I don't do as badly, I wouldn't be game to try a fast.

My blood were all normal too, only thing out of whack was chronic infections.

[bny06]

I was reading this post and was curious if yall ever figured out what exactly was causing it? I have wierd neuropathy- but also muscle weakness all over- even if I laugh for a bit my facial muscles feel like they ran up the stairs really fast- just that fatigued feeling.. I have been gluten free for 7 weeks and though i was super weak all over for a few months before we figured out that it was celiac (i had a lot of weight loss suddenly) my neuro/muscular symptoms really started after I went gluten free (that week).. so curious if yall found any answers!? thanks!

[JV909]

Hello everyone, I too am curious what people in this thread may have discoverd over the past few years. I have had very similar symptoms for the last 2.5 years and have been to countless specialists with no dx. My primary issue is muscle weakness and what feels like a slight delay in my coordination. I feel sluggish and clumsier than normal; its a very constant feeling, though some weeks I feel rather normal, and other weaks I feel like i just want to lie down.

Brain MRI, C-spine MRI, EMG, full work up blood tests, Lyme Disease test, mineral deficiency test, Celiac test, Glucose/Blood Sugar, Thyroid, Rheumatoid, Sleep Apnea -- ALL come up normal. The only thing that was a bit off was a low vitamin D level. Here is my main question -- could I be gluten intollerant and have ZERO digestive issues? Becuase I have no digestive issues whatesover.

All this started at the completion of 1.5 years of P90X (a very strenious fitness program with a very high protien/low carb diet). I did the diet longer than recommended and started looking too thin. Everything was fine till I started to have a shakey feeling in arms and legs and felt like my body was telling me I needed more carbs or fat. I noticed this especially when I was hungry. I went off the diet and then off the fitness plan and the weakness has persisted for the last 2.5 years. It's very slowly progressed and I'm not sure what avenue to go down next.

Thanks so much for any feedback...

[IveGotEffinCeliac]

Hello everyone, I too am curious what people in this thread may have discoverd over the past few years. I have had very similar symptoms for the last 2.5 years and have been to countless specialists with no dx. My primary issue is muscle weakness and what feels like a slight delay in my coordination. I feel sluggish and clumsier than normal; its a very constant feeling, though some weeks I feel rather normal, and other weaks I feel like i just want to lie down.

Brain MRI, C-spine MRI, EMG, full work up blood tests, Lyme Disease test, mineral deficiency test, Celiac test, Glucose/Blood Sugar, Thyroid, Rheumatoid, Sleep Apnea -- ALL come up normal. The only thing that was a bit off was a low vitamin D level. Here is my main question -- could I be gluten intollerant and have ZERO digestive issues? Becuase I have no digestive issues whatesover.

All this started at the completion of 1.5 years of P90X (a very strenious fitness program with a very high protien/low carb diet). I did the diet longer than recommended and started looking too thin. Everything was fine till I started to have a shakey feeling in arms and legs and felt like my body was telling me I needed more carbs or fat. I noticed this especially when I was hungry. I went off the diet and then off the fitness plan and the weakness has persisted for the last 2.5 years. It's very slowly progressed and I'm not sure what avenue to go down next.

Thanks so much for any feedback...

What has happened since January?