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Worried About Neurological Symptoms

Nan2N

By Nan2N
in Related Issues & Disorders

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Nan2N Explorer
Nan2N
Posted

I've started getting the shakes really bad since going gluten free. My hands used to shake and I had trouble writing before being diagnosed, but now my hands shake really bad and so does my left leg and foot. The brain fog has lifted a little bit, but it still feels like half my brain is shut off. I'm worried that these may increase or not get better even though I'm gluten free. I have been extremely careful about being gluten free so I don't think I'm still getting any by accident. I've read a lot about the neurological effects from celiac and am really concerned because I didn't get the upset stomach or anything, just the brain stuff.

Does anyone have any information on that part of the disease? Has anything like this happened to anyone else? It's got me really worried that I won't get my sharp brain back. And I would sure hate to find out it can still get worse after going gluten free.

Thanks for the info.

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Lisa Mentor
Lisa
Posted
I've started getting the shakes really bad since going gluten free. My hands used to shake and I had trouble writing before being diagnosed, but now my hands shake really bad and so does my left leg and foot. The brain fog has lifted a little bit, but it still feels like half my brain is shut off. I'm worried that these may increase or not get better even though I'm gluten free. I have been extremely careful about being gluten free so I don't think I'm still getting any by accident. I've read a lot about the neurological effects from celiac and am really concerned because I didn't get the upset stomach or anything, just the brain stuff.

Does anyone have any information on that part of the disease? Has anything like this happened to anyone else? It's got me really worried that I won't get my sharp brain back. And I would sure hate to find out it can still get worse after going gluten free.

Thanks for the info.

What you are describing is very common among us. Injections of B-12 helped me tremendously. Gradually I was able to take B-12 by mouth.

Things will improve, but sometimes it seems like it takes forever. Hang in there.

ravenwoodglass Mentor
ravenwoodglass
Posted

I know how scarey things like that can be. It can take awhile for the brain and nerves to repair but usually they will. Are you getting plenty of protein? That can help a bit and do heed the B12 suggestion. If you don't want to do shots if you get some sublingual B12 that should help a great deal.

I was very far advanced neurologically when I was diagnosed. For the most part I have healed. I even have the reflexes back that I lost at about age 7, almost 40 years before I was finally diagnosed correctly. You should notice some resolution within about 2 to 3 months of your neuro stuff. If your trembling gets worse or does not improve do make sure to get things checked out though.

Nan2N Explorer
Nan2N
Posted
  • Author
I know how scarey things like that can be. It can take awhile for the brain and nerves to repair but usually they will. Are you getting plenty of protein? That can help a bit and do heed the B12 suggestion. If you don't want to do shots if you get some sublingual B12 that should help a great deal.

I was very far advanced neurologically when I was diagnosed. For the most part I have healed. I even have the reflexes back that I lost at about age 7, almost 40 years before I was finally diagnosed correctly. You should notice some resolution within about 2 to 3 months of your neuro stuff. If your trembling gets worse or does not improve do make sure to get things checked out though.

Actually I was told by my dietician that I'm eating too much protein! I've been trying very hard to gain some weight. I'm waiting on blood results that will check for B12. Can you get the shots without the doctor thinking you need them? And where do you get the sublingual B12...at the health food store? My doc told me I don't have malabsorption by my blood work I had done previously. Even though I've lost 30 pounds.I had been taking vitamins which probably threw everything off. I stopped the vitamins for the B12 test. They're checking other vitamins too. How long should I give the shakes? I'm sure my doc is sick of seeing me for all my complaints.

Thanks

CuriousOne Apprentice
CuriousOne
Posted

I am gluten intolerant myself. I may have celiac, I haven't been tested. I never seemed to have GI issues until I decided to go time without gluten...then when I reintroduced it, I had some pretty horrible GI symptoms.

To this day now I get GI symptoms. It depends on how much gluten I eat, things like that.

More of my symptoms are neurological, and always have been. Sad.. I spent from 5th grade to just recently in depression. Probably 10 of those years I was suicidal daily. Many many of those years depression so extremely deep...SO SO SO SO SO SO DEEP. A kid in 8th grade shouldn't be going through that. I never had a normal high school or middle school experience. It was more like torture/hell to me... even college wasn't easy...although finally I experienced what normal was like when I took Paxil.

Neways to the point. how insidious this is... last weekend I had a few cookies and a few pita chips. then to top off the weekend I had 2 huge bowls of oatmeal raw. I had some minor GI issues..not much...

But then I seemed to enter a depression again...and I'm only now coming out of it. Its so insidious, because even though I knew I ate gluten...it didn't matter. The depression became part of me. Suicidal thoughts even.. thinking how life wasn't worth it. To top it off I wasn't sleeping that much... which always makes it all worse.

But yeah. I'm finally coming out of that whole mess. Just from that small amount of gluten. And it was like I was blinded by the whole thing the whole time. How crazy is that. So I definitely understand you... as gluten mainly affect me in the head. How?? I wish I knew the exact mechanism...I just wish I knew.

G'luck. Stay away from gluten!

ravenwoodglass Mentor
ravenwoodglass
Posted
Actually I was told by my dietician that I'm eating too much protein! I've been trying very hard to gain some weight. I'm waiting on blood results that will check for B12. Can you get the shots without the doctor thinking you need them? And where do you get the sublingual B12...at the health food store? My doc told me I don't have malabsorption by my blood work I had done previously. Even though I've lost 30 pounds.I had been taking vitamins which probably threw everything off. I stopped the vitamins for the B12 test. They're checking other vitamins too. How long should I give the shakes? I'm sure my doc is sick of seeing me for all my complaints.

Thanks

It can take a very long time for the B12 deficiences to show up in blood work. They watched mine drop from over 500 to 212 over a year and still said everything was fine. Finally the neuro said that even though my levels were still technically in the normal range that I should get the sublingual B12 anyway to see if it helps. I was prediagnosis at the time, they thought I had MS, but even still consuming gluten it helped a great deal. He said after I was at last diagnosed that when you have celiac you are not able to utilize B12 from your food or from regular supplements due to the damage to the GI tract. There are very few of us who will not benefit from taking it. You can not take too much B12, what your body doesn't need it will 'pee' out.

darlindeb25 Collaborator
darlindeb25
Posted

I get my B12 from www.Lame Advertisement.com . It's called Biochem Superior B12, made by Country Life. Country Life Vitamins have just become certified gluten free. It's a sublingual methylcobalamin B12, which is much better for us to take than cyancobalamin. I take 3000mcg daily, you may want to start out at a smaller dose. It does take a few months sometimes to notice a difference, but it really does help. I have been taking B12 for 3 yrs now, if I stop for a few weeks, I do know the difference. Jarrow brand is an excellant brand too.

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Nan2N Explorer
Nan2N
Posted
  • Author
I get my B12 from www.Lame Advertisement.com . It's called Biochem Superior B12, made by Country Life. Country Life Vitamins have just become certified gluten free. It's a sublingual methylcobalamin B12, which is much better for us to take than cyancobalamin. I take 3000mcg daily, you may want to start out at a smaller dose. It does take a few months sometimes to notice a difference, but it really does help. I have been taking B12 for 3 yrs now, if I stop for a few weeks, I do know the difference. Jarrow brand is an excellant brand too.

Thanks for the info! How do you know how much to take? Did you have a blood test to determine if you needed it? I'm still waiting for my results.

MyMississippi Enthusiast
MyMississippi
Posted

Nan,

Don't worry about all your questions to your doctor. Doesn't matter if he "gets sick of you"--- Just keep at it until you get the answers you need. Often time, "The squeaky wheel gets the grease"---

So keep squeaking--- :)

darlindeb25 Collaborator
darlindeb25
Posted

Well, I wasn't getting the answers I needed from the doctors. I didn't know I needed to ask for a B12 blood draw specifically, I thought the doctors would know to do that without my asking. I mean, geez, here I am celiac, with complaints of neuropathy. They are doing nerve conduction tests, I had already been diagnosed with carpal tunnel 8 yrs before--I would have thought they would have known to check my B12 level. Now that I know what I know about B12, to me, it seems they would have checked it first. They never checked my levels. After researching and researching about neuropathy, I found so much info about B12, I decided to try it myself. I started out with 1000mcg of B12, and have gradually built up to 3000mcg. The first time my doctor decided to test my B12 level, it came back at 1237, and I was taking 1000mcg. I was told that my 1237 level was reflecting the amount of what I was taking and that from that point on, my level will always reflect the amount I take. At 1237, my doctor told me not to worry about my B12, he didn't freak out that it was too high, like some doctors seem too, but he dismissed me as having a B12 problem.

My neurologist tells me to keep taking B12, as long as I feel it works, keep taking it. I know it does, so I will.

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