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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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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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