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Neuro Symptoms While On gluten-free Diet, Can Somebody Relate To My Story?

Jamesheff

By Jamesheff
in Coping with Celiac Disease

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Jamesheff Newbie
Jamesheff
Posted

Hi all

Just a quick question. Can i ask you to tell me your neurological healing experiences once you started on a gluten-free diet? I am gluten-free since April 09 and thankfully alot of my symptoms have started to disappear (Altho i will admit that they got a hell of a lot worse before they started to improve). I am now waiting for the nerves and muscles to heal which apparently take the longest of all the symptoms to recover. I have recently noticed that my legs,hands and neck muscles & nerves are tingling and twitching more frequently thAn before i went G.F altho sometimes my arms or legs can "fall asleep" for an hour or two. . I think this maybe a sign that the nerves are finally starting to heal and 'wake up' after years of damage. Can anyone relate to my story? Did you find that your neuro symptoms got worse before they started to improve?

Would love to hear back from you :)

P.S I am already taking B12 drops.

Warmest Regards

James

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Gfresh404 Enthusiast
Gfresh404
Posted
Hi all

Just a quick question. Can i ask you to tell me your neurological healing experiences once you started on a gluten-free diet? I am gluten-free since April 09 and thankfully alot of my symptoms have started to disappear (Altho i will admit that they got a hell of a lot worse before they started to improve). I am now waiting for the nerves and muscles to heal which apparently take the longest of all the symptoms to recover. I have recently noticed that my legs,hands and neck muscles & nerves are tingling and twitching more frequently thAn before i went G.F. I think this maybe a sign that the nerves are finally starting to heal and 'wake up' after years of damage. Can anyone relate to my story? Did you find that your neuro symptoms got worse before they started to improve?

Would love to hear back from you :)

P.S I am already taking B12 drops.

Warmest Regards

James

I can't really relate with the whole neurological issue part. But I do know that twitching nerves and muscles can be due to a magnesium deficiency, so you may want to look into that.

heatherjane Contributor
heatherjane
Posted
Hi all

Just a quick question. Can i ask you to tell me your neurological healing experiences once you started on a gluten-free diet? I am gluten-free since April 09 and thankfully alot of my symptoms have started to disappear (Altho i will admit that they got a hell of a lot worse before they started to improve). I am now waiting for the nerves and muscles to heal which apparently take the longest of all the symptoms to recover. I have recently noticed that my legs,hands and neck muscles & nerves are tingling and twitching more frequently thAn before i went G.F altho sometimes my arms or legs can "fall asleep" for an hour or two. . I think this maybe a sign that the nerves are finally starting to heal and 'wake up' after years of damage. Can anyone relate to my story? Did you find that your neuro symptoms got worse before they started to improve?

Would love to hear back from you :)

P.S I am already taking B12 drops.

Warmest Regards

James

I've been gluten-free since January and neurological symptoms have also been giving me trouble. I've had bouts of dizziness, facial tingling, and I even passed out once this summer. My hunch is that it's something related to celiac, but I'm not sure. I can't imagine where I'm getting any gluten....I'm EXTREMELY careful. I've had all my nutrient levels checked-all normal, thryoid-normal, blood sugar-normal, BP-a tad low, but normal. I even had a CT scan done, but it came back normal too. My primary care Dr has no idea what is wrong with me and has referred me to a neurologist, whom I will see next week. My allergies have worsened lately too, so I'm wondering if it could also possibly be something inner ear related...or stress.

Mrs. Smith Explorer
Mrs. Smith
Posted

I have also had this problem post gluten-free. Calcium, magnesium, b12, massage therapy and excersize helped me. Patience and time helped too. It only lasted a couple of months. Now when I get glutened I seldom experience any of these problems except muscle pain. The twitching, and tingling has all resolved with the diet and bi-weekly massages really helped relax the muscles!! I liked taking epsom salt baths for sore muscles too.

Rudi Newbie
Rudi
Posted
I've been gluten-free since January and neurological symptoms have also been giving me trouble. I've had bouts of dizziness, facial tingling, and I even passed out once this summer. My hunch is that it's something related to celiac, but I'm not sure. I can't imagine where I'm getting any gluten....I'm EXTREMELY careful. I've had all my nutrient levels checked-all normal, thryoid-normal, blood sugar-normal, BP-a tad low, but normal. I even had a CT scan done, but it came back normal too. My primary care Dr has no idea what is wrong with me and has referred me to a neurologist, whom I will see next week. My allergies have worsened lately too, so I'm wondering if it could also possibly be something inner ear related...or stress.

Dear HeatherJane...

I read your response to the author of the topic. My wife has been having severe symptoms for years now and a few months ago we went to see our family doctor. Blood work done and it came back normal except for iron levels low. She was prescribed Iron pills and its possible that her levels are normal now. However her symptoms persisted and she was told by our doctor to eliminate diary products for two weeks, symptoms persisted and she was also tested for celiac disease through blood but it was negative. Because her symptoms got worse after going back to regular diet, we were referred to a GI doctor and a week ago she had an endoscopy and colonoscopy. We are waiting for the biopsy results as the doctor will look into whether she is gluten intolerant. It saddens and is painful to watch my wife be in so much pain everyday. Today she said her symptoms are worse, fatigue, severe stomach pain and she said that it feels as if she was run over by a car. She is also having feelings of sadness, depression and anxiety....

Can you share with me how you got gluten free? What does one have to do to be gluten free? What is your daily diet for breakfast, lunch, dinner, snacks? We plan on going back to the doctor to as for a thyroid test, and a CT scan. What are your options now? Have you been diagnosed with Celiac Disease?

Your help is great appreciated!

RiceGuy Collaborator
RiceGuy
Posted

Agreed about the magnesium. It has helped me immeasurably.

P.S I am already taking B12 drops.

What's the dosage, and what form is it? Research shows that methylcobalamin is more effective than cyanocobalamin. However, liquid sublinguals may not be as effectively absorbed as lozenges. The way I see it, the few seconds the liquid stays under the tongue just isn't long enough. But a lozenge slowly dissolves, allowing much more time for absorption to take place.

I would therefore recommend a sublingual lozenge (may be called a tablet) methyl B12, of at least 1mg, three times daily, or 5mg once per day. But from what I can tell, I think the magnesium was more helpful to me. At least that's the way it seems.

heatherjane Contributor
heatherjane
Posted
Dear HeatherJane...

I read your response to the author of the topic. My wife has been having severe symptoms for years now and a few months ago we went to see our family doctor. Blood work done and it came back normal except for iron levels low. She was prescribed Iron pills and its possible that her levels are normal now. However her symptoms persisted and she was told by our doctor to eliminate diary products for two weeks, symptoms persisted and she was also tested for celiac disease through blood but it was negative. Because her symptoms got worse after going back to regular diet, we were referred to a GI doctor and a week ago she had an endoscopy and colonoscopy. We are waiting for the biopsy results as the doctor will look into whether she is gluten intolerant. It saddens and is painful to watch my wife be in so much pain everyday. Today she said her symptoms are worse, fatigue, severe stomach pain and she said that it feels as if she was run over by a car. She is also having feelings of sadness, depression and anxiety....

Can you share with me how you got gluten free? What does one have to do to be gluten free? What is your daily diet for breakfast, lunch, dinner, snacks? We plan on going back to the doctor to as for a thyroid test, and a CT scan. What are your options now? Have you been diagnosed with Celiac Disease?

Your help is great appreciated!

I'm sorry to hear you all are having such a tough time. If she really has celiac, she should start feeling better after eliminating gluten completely from her diet. I was diagnosed w/ celiac last January after a year or more of annoying digestive issues and have been gluten-free ever since. Basically, "gluten free" means you completely abstain from any form/source of gluten - wheat, rye, barley (and oats, unless they are the true gluten-free variety). It is a complete dietary change that must be followed for the rest of a person's life. It can be quite overwhelming at first, as many folks on this forum will attest. Some people adapt quickly, and for others it's a struggle. There are several helpful books out there... "Living Gluten Free for Dummies" is a great one to help you get started. (It thoroughly explains what you can and cannot eat, and even has a recipe section.) This forum is great too. Just ask questions!

And let me say, too, that it does take a while for some people to notice a drastic improvement in how they feel. I think it has a lot to do with how long the disease has gone undiagnosed. I think I'm one of those people...hope I'll start feeling better soon.

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