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masterjen

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masterjen Explorer

I've noted on the forum that many people with celiac have neurological symptoms, as I have. I'm nervously waiting for an upcoming Neuro. appointment, as their is concern about the particular symptoms I have. Some, though, sound so much like the gluten-related neuro symptoms, so maybe I don't have to be so scared. I'm curious: how many of you have subsequently been diagnosed with MS?


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gary'sgirl Explorer

I just went through being tested for MS, because my symptoms seemed like they could be MS related too, but they came back fine. I started looking up reasons for these symptoms with Celiac disease and found that a lot of them can be caused by not having enough B12 absorption. So, for the moment that is what I am pursuing. My doctors ordered blood tests for vitamin levels - including B12 and I am hoping that we are on the right track.

I have read that sometimes you have to have injections of B12 to raise the levels in your blood until your intestines are healed enough to absorb the vitamin.

I hope it all ends up being okay for you.

nyctexangal Rookie

Earlier this week, I had tons of neruo issues. Got tons of blood work with a Celiac dietitian. I learned I was not absorbing any minerals/calcium/Magnesium/B6/or Vitamin D. Once I got on doses of these, the neurological symptoms are going away. Just something to look into

...and I have an aunt with MS- which I believe is due to undiagnosed Celiac- since she's my Dad's sister (my dad also has Celiac). Hope you get to feeling better. I'd look into vitamin and mineral deficiencies. These have caused me so many issues that I'm thankful to be resolving.

  • 3 weeks later...
Guava Newbie

I can relate, I have been having some MS type symptoms, Muscles cramps, twitching, and overall fatigue. The more I read into the Celiacs stuff the more it seems very real that it is all diet related. I have no history of MS in my family but it is still scary. The symptoms of mine seemed to go away, but then the anxiety and nervousness issues came back. I am on the Gluten free diet now and im hoping it will all turn around. Your not alone.

conniebky Collaborator

I was also tested for ms. Spinal tap, MRIs, the whole shabang. The first neuro's report says "everything looks fine, so it must be ms, based on complaints"

I got a second opinion and that report says, "everything looks fine, so it must be ms, based on complaints"

That was about 9 years ago. I've been wondering and worrying about all the people out there who have been "diagnosed" with ms who may have a gluten problem. It makes me sad.

ravenwoodglass Mentor

I was thought to have MS for quite a while. My MRI showed multiple lesions but they were not is quite the right place to be demylinating lesions. A subsequent spinal showed no debris that would normally be found in MS. The neuro called my lesions UBOs, which means unidentified bright objects and told me they meant nothing despite all the issues I was having. Read that as ' here have an antidepressant!' A few years later I did some research on UBOs and found that in other countries they are considered diagnostic of celiac that has attacked the brain. It took a while but my symptoms resolved for the most part after going gluten free. I do still have some memory and balance issues, ataxia, but my recovery was hindered by the length of time I had the issues. I had ataxia since childhood that had progressed to the point where I couldn't walk unaided by diagnosis. I can now walk freely and have regained reflexes in my legs, something I had not had since age 8 or so.

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    • trents
      I tend to agree with RMJ. Your doc took the reasonable and practical approach to diagnosis. All things considered, it was the right way to go. However, if you have first degree relatives that show signs of possible celiac disease, urge them to get formally tested before they start the gluten free diet.
    • RMJ
      It sounds like you have a very reasonable GI doctor, who diagnosed you based on family history and symptoms after eating gluten. I would consider you lucky! The other option would be to make yourself very sick by doing weeks of a gluten challenge prior to an endoscopy.
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      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
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