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Gluten Intolerance & Neurological Problems

Link

By Link
in Related Issues & Disorders

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Link Rookie
Link
Posted

My 20 yr. old son is gluten/casein intolerant. Apparently he started with a slight hand tremor around age 15, which has become more pronounced since he has been in college. I know that ataxia, peripheral neuropathy, and migraines are the typical neuro. manifestations of celiac disease/GI, with s/s of peripheral neuropathy being numbness and tingling sensations, pain? in the extremities...mostly the feet. Does anyone with GI have hand tremors and what has been your experience with how it responded to a gluten-free diet? My son is in Landscape Architecture and has to do a lot of fine free-hand drawing and he now even has trouble putting his pencil point on a dot and drawing a straight line. He can't even give a presentation which requires his pointing to his project design because his hands shake uncontrollably...so he grips a pen to point with--which seems to help. He has to keep his other hand jammed in his pants pocket so no one sees it shaking. My mother had the same thing...they called it an essential tremor/unknown etiology. She was never dx with Celiac/GI. But I know she had it, because I have it...and looking back she had so many of the s/s including Derm. Herpetiformis. Any insight would be most welcomed. Thanks. Link

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ravenwoodglass Mentor
ravenwoodglass
Posted

I had severe nerve damage from celiac. I used to worry that folks would think I was an alcoholic because of those trembling hands. It did resolve along with most of my other neuro issues once I had been gluten free for a while. One thing that seemed to help with healing my nerves was sublingual B12 tablets. I can't say for sure it will help your son but adding it to the vitamins he takes may help and is worth a shot.

gf-soph Apprentice
gf-soph
Posted

I wanted to second the B12 suggestion - has your son had his levels checked? I was quite low at one point and I had an uncontrolable tremor in my feet (amongst other symptoms). It resolved quickly with B12 injections (now maintaining with sublingual tablets), though I also have some clumsiness that hasn't gone away yet which may be due to general exhaustion or is still healing.

It's a good idea to find out his exact B12 levels, as the recommended minimum in some countries is too low. In Australia the minimum level is 145, in Japan I think it is 500 - big difference. I have learnt over time that I need to be at least 400 to not have any symptoms.

Link Rookie
Link
Posted
  • Author

Thank you both for your info and advice. My mom started taking sublingual B-12 about a year before she died...too little, too late, I'm afraid. She had her tremor for 20+ years, which totally destroyed her quality of life. I am angry that not one MD picked up on any of her s/s as possibly being related to gluten/celiac. Months before she passed, she had been scratching uncontrollably with Derm. Herpet.

I have passed your advice along to my son with the hope that knowledge is power. Young adults feel that they are invincible so I keep chipping away with bits and pieces of gluten info trying to reinforce the seriousness of this condition, and that it isn't something to be taken lightly. (It's a mom thing).

Again, thank you both so much!!

  • 4 weeks later...
Nilnala Newbie
Nilnala
Posted

Thank you both for your info and advice. My mom started taking sublingual B-12 about a year before she died...too little, too late, I'm afraid. She had her tremor for 20+ years, which totally destroyed her quality of life. I am angry that not one MD picked up on any of her s/s as possibly being related to gluten/celiac. Months before she passed, she had been scratching uncontrollably with Derm. Herpet.

I have passed your advice along to my son with the hope that knowledge is power. Young adults feel that they are invincible so I keep chipping away with bits and pieces of gluten info trying to reinforce the seriousness of this condition, and that it isn't something to be taken lightly. (It's a mom thing).

Again, thank you both so much!!

I know its been awhile since anyone has commented on this post, but along with that b12 I would highly recommend having his phosphorus levels checked, as I know from my own experience that low phosphorus can cause tremors as well.

  • 10 months later...
TwitchyMcLurcherson Newbie
TwitchyMcLurcherson
Posted

My 20 yr. old son is gluten/casein intolerant. Apparently he started with a slight hand tremor around age 15, which has become more pronounced since he has been in college. I know that ataxia, peripheral neuropathy, and migraines are the typical neuro. manifestations of celiac disease/GI, with s/s of peripheral neuropathy being numbness and tingling sensations, pain? in the extremities...mostly the feet. Does anyone with GI have hand tremors and what has been your experience with how it responded to a gluten-free diet? My son is in Landscape Architecture and has to do a lot of fine free-hand drawing and he now even has trouble putting his pencil point on a dot and drawing a straight line. He can't even give a presentation which requires his pointing to his project design because his hands shake uncontrollably...so he grips a pen to point with--which seems to help. He has to keep his other hand jammed in his pants pocket so no one sees it shaking. My mother had the same thing...they called it an essential tremor/unknown etiology. She was never dx with Celiac/GI. But I know she had it, because I have it...and looking back she had so many of the s/s including Derm. Herpetiformis. Any insight would be most welcomed. Thanks. Link

I have a right hand tremor that doesn't respond anymore to being gluten-free. Have you had an MRI done to check for lesions or a good neuro work-up to make sure there aren't additional problems?

I'm trying the b12 route myself, as well as high doses of vitamin D (I have a diagnosed severe deficiency); I'll let you know if it works.

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