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Multiple Sclerosis Workup

bny06

By bny06
in Coping with Celiac Disease

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bny06 Apprentice
bny06
Posted

I was curious who all on here has been evaluated for MS and it ended up being celiac? I am almost 4 weeks out on a gluten free diet, and continue to have loss of dexterity/fine motor skills in both hands with numbness/tingling and i'm worried that my symptoms seem a lot like MS, so am now awaiting a workup for that too. ugh! Anyhow, anyones experiences/advice is greatly appreciated!! Thanks!

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Reba32 Rookie
Reba32
Posted

I haven't had an MS workup, but I have been tested for several other auto-immune disease like lupus, sjogren's and systemic sclerosis/scleroderma. I'm waiting to see my doctor again next week. I have those same symptoms, as well as constant vertigo and tinnitus, cognitive dis-function, all over pain and weakness and etc etc ad nauseum. I've so far seen two ENT specialists, and apparently the problem is not in my ears. The last one said my inner ears look perfect, good enough to show in a text book! Which is rather frustrating really. Once again, it's another one of those "you don't look sick" things.

I hope you can figure yours out soon! Unfortunately, once you have one auto-immune disease, it is not uncommon to develop others. I've got Celiac and had Grave's Disease so far, just waiting to figure out what else!

ravenwoodglass Mentor
ravenwoodglass
Posted

I have had an MS workup. First they should test your B12 levels if those haven't already been done because low b12 can cause issues like your having.

I had an MRI first which showed white lesions very similiar to the lesions found with MS but not in quite the right places. They then did a spinal tap looking for a particular type of debris found with MS. None was found so I was told the while lesions, UBOs, were meaningless. They are actually diagnostic of gluten ataxia.

If you haven't been gluten free very long you may want to see if the diet helps resolve your issues. Some sublingual B12 may also be helpful.

bny06 Apprentice
bny06
Posted
  • Author

Thanks so much yall! I have only been gluten free for almost 4 weeks, and i'm sure making lots of mistakes along the way! My neuro symptoms seem to be getting worse, defintely not improving! I have an MRI of my head and neck tomorrow, if it was something like MS I need to do something to stop the progression of losing my dexterity! It's freaking me out, and really interfering with my job and daily living!

They checked my B12 levels last week and i was told they were normal - i'm going to ask for exact numbers when I go back to the GI on monday. I have been taking the sulbingual B12 anyways for about a week.

I keep telling myself the likely hood of it being two separate issues is rare- that I not only have celiac diagnosed and the wt loss and malnutrition from that the same time I develop major symptoms of another disease (though I know some can go hand in hand - but to present at the same time?????) that it is likely celiac.. however I can't stand having this big unkown and my hands and leg continue to get worse if something may help.. hopefully it will just be celiac and I just need to give it some more time!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks so much yall! I have only been gluten free for almost 4 weeks, and i'm sure making lots of mistakes along the way! My neuro symptoms seem to be getting worse, defintely not improving!

Are you going with mostly whole unprocessed foods? That will help prevent too many mistakes. Be sure to check all supplements and drugs with the maker but be aware that barley and wheat grass can be in a supplement and it will still say gluten free so read the whole label.

When your antibodies start to go down and then you make a mistake or get CC'd that will flare the antibodies back into action which may explain why things seem to be getting worse. It also takes a long time for nerves to heal so it is normal not to notice much of a difference at first. There can be a lot of things that can affect the movement and feeling in your hands and the MRI should eliminate or find clues if it is MS or a pinched nerve.

I hope things improve for you soon. I found both acupuncture and physical therapy to be helpful with healing. Don't know if they are something that might help you also.

heatherjane Contributor
heatherjane
Posted

I've been gluten free for almost three years and have ongoing neuro symptoms (tingling, dizziness, ear pain, etc.), and they all set in after I started the diet. I'm very strict and mindful about gluten/contamination, and my B vitamin levels have consistently tested normal. My ears are also supposedly fine. I've been to a neuro and an ENT, among others, and no one can figure out what's causing it.

bny06 Apprentice
bny06
Posted
  • Author

Thanks so much yall!! Well I had my MRI's and they look clean- phew! I got my biopsy results as well, and they were "normal" but i had been eating gluten free for 2 weeks so not sure what that means! My b12 levels were in the 1000's supposedly.. can you have B12 toxicity??? I started thinking maybe i have some wierd presentation of carpal tunnel or something?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks so much yall!! Well I had my MRI's and they look clean- phew! I got my biopsy results as well, and they were "normal" but i had been eating gluten free for 2 weeks so not sure what that means! My b12 levels were in the 1000's supposedly.. can you have B12 toxicity??? I started thinking maybe i have some wierd presentation of carpal tunnel or something?

If you have been taking the sublinguals every day go to every couple of days instead. I was doing some research on high levels of B12 a while back because on my last test they were over 1,000 also. I think I bookmarked the study on my other computer and will see if I can find it later but I seem to recall that in some instances too much can cause symptoms similiar to a deficit.

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