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Member Since 18 Oct 2010
Offline Last Active Mar 16 2011 05:36 PM

Posts I've Made

In Topic: Gluten Intolerance & Neurological Problems

13 March 2011 - 06:48 PM

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.

In Topic: Gluten Ataxia Neuropathy Neurological Presentation

13 March 2011 - 06:27 PM

Hi pathway...

Nice to meet you. Glad you came onboard. :) I think more people need to know not only about Celiac Disease and Gluten Intolerance/Sensitivity, but also about gluten ataxia...as it's probably the only known reversible or at least non-progressive form of ataxia if gluten is eliminated 100%. I think there are lots of people out there suffering from the neuro effects of gluten's havoc that just haven't been presented with this information yet. Doctors...are even more clueless. So it's our duty to get the word out. :)

I know you'll find a lot of support here - I already have, and my "attendance" is somewhat sporadic. :)

My ataxia and associated neuro symptoms have only increased, so being gluten-free hasn't helped them (granted, this is only after being gluten-free again for three months... I had to do a gluten challenge before my endoscopy). I wish it was reversible for me! But perhaps I have another disorder that isn't related (they'll be checking again in a year to see if it's progressed to clinically definite MS). Or maybe it's caused by my severe Vitamin D deficiency or a multivitamin deficiency- I'm loading up on vitamins now, so we'll see if I'm doing better in 6-8 weeks.

In Topic: Beth Israel Deaconess Medical Center

21 October 2010 - 07:05 AM

I was diagnosed @ Mass General in Danvers in March - the GI was nice, but certainly no expert in Celiac - I have been begging for tests that are supposed to be routine after this diagnosis, but not having any luck getting the answers I need. He said "yup, you have Celiac" and that was the last I heard! In the last 4 months, no one has bothered to check where my overall health stands today; after 10 years undiagnosed, I am assuming (and feeling!!) that the damage is extensive and want to, need to know what to do from here.

So, I did some research on Beth Israel - the Celiac Disease Center sounds great - what an impressive staff of MD"s! I just made an appt last week - originally it was with Seema Maroo, who sounds amazing! I was so excited! But the office just called me to let me know there was a "scheduling error" and she is not available for another 2 months. Ugh! So I switched my appt to Dr Daniel Leffman, a recent addition to the team - his primary focus is Celiac and is on the celiac research team, so I am hoping he has lots of answers for me! I am going August 20th, so the wait time is not too bad...

Did you ever end up going? Who did you see?

How did it go? I'm trying to find a neurologist through them that also knows celiac.

In Topic: Shared Kitchens?

19 October 2010 - 07:23 AM

I think you know what you need to do. This has nothing to do with gluten.

Well, regardless, there's a lot more to a marriage... and life... than a few sentences I wrote in a forum. I didn't mean to come on here looking to rant. Surely some of you have shared kitchens- how do you manage? What specific tips might you have for keeping things safe? Is it possible without owning a dishwasher? We live in a small urban apartment with two little boys, the oldest (two years old) who has to be gluten-free/cf as well due to being on the autism spectrum (and the diet is working for him!). I also seem to be allergic/intolerant to corn and casein and possibly even to soy now. Do these cross-contaminate the way gluten does?

In Topic: Shared Kitchens?

18 October 2010 - 03:20 PM

I am going to suggest that you two go to couples counseling. It's like telling your asthmatic spouse that you won't stop smoking in the house. If he doesn't care that you are getting sick, it's not an issue with the food that's the source of the problem - it's the person.

Oh, we're in couples' counseling for everything else already. It's not doing a thing.

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