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Neuromuscular Disease

billy

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billy Rookie
billy
Posted

has anyone suffered or is suffering from a neuromuscular disease as a result of or in addition to celiac or gluten intolerance?

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ravenwoodglass Mentor
ravenwoodglass
Posted

I was thought to have MS for quite a while before I was diagnosed but had effects in my nervous system since childhood. By age 11 I had lost reflexes in my legs and by the time I was diagnosed in my 40's I could barely walk. When they did testing on my legs my right leg was basically dead as far as nerve conduction goes. I also have ataxia which makes me feel like I am constantly about to fall to the right. On MRI they found brain lesions that in other countries are diagnostic of celiac but here they just shrugged their shoulders and it would be another 5 years before I was diagnosed. I still have some degree of ataxia but by the time I had been gluten free for abut 2 years I had weak reflexes back in both legs and I don't drag my leg when I walk any longer. Nerves can take a while to heal but they can heal.

whitball Explorer
whitball
Posted

I was diagnosed in 2004 with metabolic myopathy. I too had significant muscle problems for many many years. Mostly pain. I was lucky to have enough muscle control to be a college athlete and worked out for most of my life. In my mid thirties, I began having huge problems with climbing stairs, stamina, holding my arms above my head, etc. My diagnosis ranged from MS to "it's in your head", to Mcardles Disease, to Metabolic Myopathy, to Celiac Disease. I had a muscle biopsy in 2004, that showed samples of my thigh muscle tissue. The fibers that were supposed to be large muscle fibers, were instead small muscle fibers. Many of them were de-nervated. Pretty scary stuff. The pain continues, when I'm tired. But I do have more stamina since going gluten free.

RiceGuy Collaborator
RiceGuy
Posted

I was having all sorts of nerve/muscle issues and pains, even long after going gluten-free. What resolved it was avoiding nightshades (which have a muscle nerve toxin), and taking B12 and magnesium. Turns out, both those nutrients are often deficient in persons with Celiac.

billy Rookie
billy
Posted
  • Author

thank you for your replies! i can't believe how familiar they all sound to my own story.

i'm still on the diagnosis road for my progressive proximal muscle weakness that started about 10 years ago. luckily i was always an avid athlete, so i had a lot of muscle to start with, like some of you. diagnosis guesses have ranged from ms to lupus to cp to md. i wasn't diagnosed with celiac, but instead ibs with gluten intolerance, so i have a hard time believing the gluten i'm eating could be wreaking this much havoc on my body if i don't have the autoimmune reaction. one neuro even thought the gluten could be causing me to slur my words, which happens when i'm extremely tired. i have other health issues, so i think i'm just one of those lucky people with more than one thing going on.

anyway, thanks again for replying with your neuromuscular stories. i hope you're all recovering and feeling stronger!

ravenwoodglass Mentor
ravenwoodglass
Posted
thank you for your replies! i can't believe how familiar they all sound to my own story.

i'm still on the diagnosis road for my progressive proximal muscle weakness that started about 10 years ago. luckily i was always an avid athlete, so i had a lot of muscle to start with, like some of you. diagnosis guesses have ranged from ms to lupus to cp to md. i wasn't diagnosed with celiac, but instead ibs with gluten intolerance, so i have a hard time believing the gluten i'm eating could be wreaking this much havoc on my body if i don't have the autoimmune reaction. one neuro even thought the gluten could be causing me to slur my words, which happens when i'm extremely tired. i have other health issues, so i think i'm just one of those lucky people with more than one thing going on.

anyway, thanks again for replying with your neuromuscular stories. i hope you're all recovering and feeling stronger!

You have a good neuro I hope you listen to him and become strictly gluten free. It wil not be an instant recovery but you will recover if you do. Chances are you are like me and don't show up on blood work. We are here to help with any questions you have. Please don't wait until your 'IBS' symptoms become more like chrons. You have been lucky to get a doctor that recognizes what is going on, I wasn't and my disease progressed so far that we never thought I could recover. I did recover a lot, I can at least walk mostly unaided but I got to the point where complete recovery was not possible I hope you don't wait that long.

Nantzie Collaborator
Nantzie
Posted
thank you for your replies! i can't believe how familiar they all sound to my own story.

i'm still on the diagnosis road for my progressive proximal muscle weakness that started about 10 years ago. luckily i was always an avid athlete, so i had a lot of muscle to start with, like some of you. diagnosis guesses have ranged from ms to lupus to cp to md. i wasn't diagnosed with celiac, but instead ibs with gluten intolerance, so i have a hard time believing the gluten i'm eating could be wreaking this much havoc on my body if i don't have the autoimmune reaction. one neuro even thought the gluten could be causing me to slur my words, which happens when i'm extremely tired. i have other health issues, so i think i'm just one of those lucky people with more than one thing going on.

anyway, thanks again for replying with your neuromuscular stories. i hope you're all recovering and feeling stronger!

I also had speech slurring before I went gluten-free. It got to the point where I couldn't even read a book to my kids. This symptom showed up when I was already sure that gluten was the problem, but I was waiting for test results to see if it was classic celiac or not. Now that I'm gluten-free, I don't get that symptom unless I'm glutened really badly. Which is all kinds of fun to explain when someone calls in the middle of the afternoon and it sounds like I've been sitting around drinking margaritas since lunch, especially when you're trying to explain why gluten makes your speech slur while you have gluten brain fog. Ugh..

I had a very hard time walking for a couple of years before I found the gluten connection to my pain. I haven't had the money to go to doctors to figure out exactly what may have been happening. I was having lingering problems up until last year when I finally started taking magnesium and the pain went away. From what I read on magnesium deficiency, it can cause muscle spasms and headaches among other things. AND they also say that malabsorption disorders "such as celiac disease" can cause magnesium deficiency. I also came across some information that sodas pull the magnesium from your body too. So with a combination of taking magnesium and cutting way back on sodas, I rarely have a problem. So for my issues, I believe I was experiencing a simple magnesium deficiency secondary to the malabsorption, not a more complex issue like gluten ataxia.

I really think that the assumption that only classic celiac is autoimmune may be a dangerous one to your health if you're considering going gluten-light rather than gluten free. I believe that the type of celiac those of us with negative or borderline tests, but with neuro, mood or supersensitive reactions will eventually prove to be just another form of autoimmune response to gluten. Just remember that 20 years ago most of the "classic celiacs" on this board were told it was all in their head too. I think at some point they will identify different types of celiac just like they have different types of diabetes. We're just lucky enough to have put the connections together before that happens.

Nancy

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  • 2 weeks later...
zeta-lilly Apprentice
zeta-lilly
Posted

It's so sad reading all these replies, that people had symptoms for years and no one even considered celiac disease. I feel so lucky that I was diagnosed before things had progressed to that point. I had started to get really clumsy. To the point where people were noticing that I got injured a lot, fell a lot, dropped things a lot, ran into things a lot, had lots of bruises, etc. I had a few people ask me what was going on. I was scared. I didn't go to a doctor because I kept telling myself it was nothing. Secretly I was scared that I had MS. Since going gluten free, my balance and coordination have improved dramatically. It makes me sad to think of all the people I've met along the way (as a nurse) who had unexplained health problems, neuralgia, diabetes, rheumatoid arthritis, etc. and were really suffering when they probably had celiac disease and no one ever tested them for it.

Shanmegjilal Rookie
Shanmegjilal
Posted

My symptoms prior to diagnosis were only neuro symptoms.I've had and still do (dx 1 mnth ago by bx) have toe numbness and pins/needles in my feet.For a couple mnths I had vibrating from my feet up.My left hand has less sensation than my right and in fact my left foot seems worse than my right!Very weird.My Dr. never thought of celiac and had been going through all the neuro checks,thyroid,diabetes type workup.I goggled my symptoms like crazy and found people talking about celiac dz.My Dr. agreed to the antibody tests but even when they were pos. didn't think it was celiac because I wasn't having GI symptoms!!!!

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