Neurological Symptoms

[glutenfreewithease]

I'd love to hear how many of you guys have neurological symptoms? I've dealt with dizziness for as long as I can remember. Off and on over the years until one day I got dizzy and it didn't go away! Muscle spasms, severe muscle pain, facial spasms, numbness in the face, legs, hands. Unable to walk without a cane because my muscles were so weak and I was shaking. I remember going to a neuro and they did the few tests they do in the office, making you walk, tickling your foot, looking at the MRI that was normal and then she turned around and said there is nothing wrong with you! Even though I could barely walk on my own! Needless to say I did not pay that bill! I have jornals full of all the symptoms just to keep track.

I have been so afraid for so long to eat anything or put anything in my mouth that now that I have received my recent results that showed antibodies (IGA, TTG - still trying to understand) and the gene testing DQ 2 and DQ1 I'm trying to chill!

I still have reactions to fish, soy, MSG-Carrageenan stuff (they use it to de-ice planes for heaven's sake!) however since I had eliminated so much from my diet I feel like I can maybe add back to my diet.

It's comforting to hear stories from others who have been through the same. Thanks so much!

[jerseyangel]

Hi and welcome

Have you begun the diet yet? I'm thinking that at least some of your symptoms may abate once you eliminate the gluten.

Before I was gluten-free, I had an altered feeling in my left arm for over a year--somewhere between numbness and tingling. I had facial numbness, tingling in my lower legs, a feeling of intense heat inside my head and mouth, difficulty at times placing my foot on the floor when walking, head fogginess and stabbing sensations on the bottom of my feet. It was difficult at times to find the right words when speaking. (this still happens when I have a gluten reaction--I get "stupid" and clumsy).

Slowly with the diet, these things got better. After 3 years, the only thing I still have with any regularity is a bit of numbness on the left side of my face and some muscle spasms in my calves and feet.

[glutenfreewithease]

Hi and welcome

Have you begun the diet yet? I'm thinking that at least some of your symptoms may abate once you eliminate the gluten.

Before I was gluten-free, I had an altered feeling in my left arm for over a year--somewhere between numbness and tingling. I had facial numbness, tingling in my lower legs, a feeling of intense heat inside my head and mouth, difficulty at times placing my foot on the floor when walking, head fogginess and stabbing sensations on the bottom of my feet. It was difficult at times to find the right words when speaking. (this still happens when I have a gluten reaction--I get "stupid" and clumsy).

Slowly with the diet, these things got better. After 3 years, the only thing I still have with any regularity is a bit of numbness on the left side of my face and some muscle spasms in my calves and feet.

I started the diet 3/2006 inadvertently. My symptoms of dizziness, loss of balance and coordination developed into jerky legs, muscle spasms, inability to walk without a cane because legs shook so severly, could not write I shook so bad, facial numbness, then convulsions and simple partial seizures that moved to grand mal. I started eliminating everything and ate only lettuce and fritos! Fritos because I could and didn't react! One year later I found an allergist that actually listened to all my symptoms and I didn't scare him off! He mentioned celiac and gluten intolerance. I had been off gluten since 3/06 and it was not 7/07. He said we could do blood work but that most likely it would be negative, which it was. That is what crept doubt in my mind and of course I cheated and ate gluten more than I would liketo admit because I just did not have a definitive answer until I read about enterolab and Dr. Fine in Dallas. I had purchased 3 or 4 different books, researched on line, called and talked with the lab and sent off for the tests and what a relief. I believe had full blown celiac at the time my symptoms were so severe. The genetic testing tells me that my mom has gluten senstitivty. She has suffer for years with problems that are too numerous to mention and she goes to the doctor tomorrow with my test results to have then test her for celiac disease.

When my symptoms started to return they were no where near as bad as back in '05. It is amazing to me how much I healed over time being gluten free. Once I started eating it again, it took me about 2 weeks to start having symptoms-but once I had another seizure that was my "gold standard" diagnosis. However, the results from enterolab have helped my family to accept the diagnosis. They were not on baord with it until they saw results on paper.

[MyMississippi]

I have facial numbness and tingling, a few muscle twitchings, a couple of muscle spasms to my feet (scarey! )

numbess and weakness to arms, legs, tingling all over, . Some dizziness and some ditziness--

These symptoms come and go.

I'm not a diagnosed Celiac--- I have a major wheat allergy for sure, numbers off the chart ! !!---

I went gluten free 2006 with improved GI symptoms, but NO improvement in neuro--- if anything, I think I'm worse So I'm investigating other things.

[darlindeb25]

Glutenfreewithease--find a new neuro. Your neuro does not seem to be understanding the celiac connection. There are neuro's who do not get it, I had one. He did diagnose my neuropathy in my arms and hands, now my legs and feet, which is why I went, he says I do not have neuropathy. When I questioned him about small fiber neuropathy, he says, "Well yes, you may have small fiber neuropathy, but we do not have a good test for that yet."

Now I have a new neuro, who from the beginning told me there is a very strong connection between gluten and neuropathy. He had a EMG w/neddles done on my legs, and thankfully, I do not have big fiber involvement. He does however recognize my balance problems, knows what I mean when I say I have cell phone vibrations in my feet, sometimes I have drop foot in my left foot, my feet go numb when I use my gazelle after 10-15 mins, cold spots, little electrical shocks in my legs, etc. He feels I may be absorbing my vitamins and minerals, yet not utilizing them properly. He also diagnosed sleep apnea almost the minute he met me, and he is correct.

My Mississippisome people find great relief of neuropathic symptoms when they go gluten free, some do not. Some do however, tremondously slow the progression, which is what I have done.

I have been taking a sublingual methylcobalamin B12 for almost 4 yrs now. B12 works, but the improvement is slow, and healing nerves hurt similiar to dying nerves. I started out with 1000mcg of the wrong B12, I was taking cynacobalamin, which is much harder for our systems to use. Then 2 yrs ago I switched to 3000mcg methylcobalamin, I do truly believe my nerves are healing somewhat.

The first step is finding a neurologist worth their weight in gold. Of course, once you do that, then you find it very difficult to get an appt with them, because they are so good! My neuro is booked now until January.

[Guest goldie]

Hi

I've had a diagnosis of "safe to assume coeliac" based on positive blood tests(EMA and very high TTG), B12 deficoiency, osteoporosis and clinical symptoms and a sister with coeliac disease.

I have been having severe muscle cramp problems for about 8 years. I was prescribed quinine but this didn't help.

I sometimes have all the muscles in a leg cramping or my hands going into spasm. Even trying on a pair of shoes can be quite embarassing - all the muscles in ny foot cramp and spasm.

Today I have had little nerve spasms around both eyes- very strange. My blood calcium and sodium are normal.

[utahlaura]

I was just finally diagnosed with celiac after my endoscopy biopsy. I was actually relieved to be finally verified as to what I already knew was wrong with me after about a hundred hours on the net and scientifically done food experiments on myself. ( seems you practically have to diagnose this disease yourself sometimes.) Finally ended up at a gastroenterologists office who believed me and did an endoscopy biopsy at MY request. Sure enough...Celiac.

As far as neurological symptoms..that's what started this whole journey in the first place. It started out with foot neuropathy ( first I was screened for diabetes...no diabetes) Then I started getting the VERY sleepy and weak effect. When I actually collapsed once after a meal, I really started to research this.

My internist gave me the IGA test which was negative..but I was still convinced it was the gluten. After eating I began to have a lot of pain in my bones and joints, dizziness, an overall "ill" feeling, horribly loud hissing in my head, bad foot neuropathy, extreme sensitivity to sound, and worst of all..extreme emotional response which could either be sobbing, anxiety, or anger to the point of rage. ( so very wierd! ) This would only happen after eating.

I eliminated gluten and went totally veggies only and was totally reaction free for a couple of weeks and felt great! Then I started reacting to even a bite of a vegetable that I was fine with the day before. Things got really confusing then. I barely ate for weeks and ended up in the ER on a food bag! What I didn't know was how difficult the "healing" process was. A nurse at the ER told me that for some it can be so bad that they have to eat as little as possible and come in every few days to the IV clinic for the food bag treatment until they were healed up enough to eat even gluten free. WOW! I prayed this wouldn't be me!

Thank God after a time the reactions to every single thing subsided and I am now able to get enough calories, etc. to survive on while I heal up. At this time I can eat only fresh veggies (except for potatoes or tomatoes) and I can also tolerate olive oil, long grain brown rice, and fish. No soy products, fruit, lactose, corn products, no anything else at all yet. But my dietician says that as time passes I'll be able to add things in. Many Celiacs, however have trouble with some non-gluten foods all their lives. Corn, tomatoes, beans, and eggs are common. One woman I met can eat anything gluten free except for watermelon. Strange, huh? Another women I met who owns a gluten free strore ( bless her!) cannot eat eggs. She says that all Celiacs have one or more non-gluten foods that will still give them the glutened reaction. Go figure.

So, here I go on my healing adventure. Right now I am just over joyed to have been able to add rice to my "good" foods. Before that I was DYING for carbs!!! Now I feel much better and have stopped losing so much weight and have more energy. Whew! Now if I can only add eggs back in! Patience plays a big roll, though. If I want to "test-add" a new food ( like potatoes again, please!) it has to be just a tiny tiny bite or else I can be really sorry.

So wish me luck. I heard that during the healing process you can be going along fine in your regimine and all of a sudden you nose dive for no apparent reason, and everything gets so confused again. Here's to hoping that won't happen to me!!!!

[glutenfreewithease]

I was just finally diagnosed with celiac after my endoscopy biopsy. I was actually relieved to be finally verified as to what I already knew was wrong with me after about a hundred hours on the net and scientifically done food experiments on myself. ( seems you practically have to diagnose this disease yourself sometimes.) Finally ended up at a gastroenterologists office who believed me and did an endoscopy biopsy at MY request. Sure enough...Celiac.

As far as neurological symptoms..that's what started this whole journey in the first place. It started out with foot neuropathy ( first I was screened for diabetes...no diabetes) Then I started getting the VERY sleepy and weak effect. When I actually collapsed once after a meal, I really started to research this.

My internist gave me the IGA test which was negative..but I was still convinced it was the gluten. After eating I began to have a lot of pain in my bones and joints, dizziness, an overall "ill" feeling, horribly loud hissing in my head, bad foot neuropathy, extreme sensitivity to sound, and worst of all..extreme emotional response which could either be sobbing, anxiety, or anger to the point of rage. ( so very wierd! ) This would only happen after eating.

I eliminated gluten and went totally veggies only and was totally reaction free for a couple of weeks and felt great! Then I started reacting to even a bite of a vegetable that I was fine with the day before. Things got really confusing then. I barely ate for weeks and ended up in the ER on a food bag! What I didn't know was how difficult the "healing" process was. A nurse at the ER told me that for some it can be so bad that they have to eat as little as possible and come in every few days to the IV clinic for the food bag treatment until they were healed up enough to eat even gluten free. WOW! I prayed this wouldn't be me!

Thank God after a time the reactions to every single thing subsided and I am now able to get enough calories, etc. to survive on while I heal up. At this time I can eat only fresh veggies (except for potatoes or tomatoes) and I can also tolerate olive oil, long grain brown rice, and fish. No soy products, fruit, lactose, corn products, no anything else at all yet. But my dietician says that as time passes I'll be able to add things in. Many Celiacs, however have trouble with some non-gluten foods all their lives. Corn, tomatoes, beans, and eggs are common. One woman I met can eat anything gluten free except for watermelon. Strange, huh? Another women I met who owns a gluten free strore ( bless her!) cannot eat eggs. She says that all Celiacs have one or more non-gluten foods that will still give them the glutened reaction. Go figure.

So, here I go on my healing adventure. Right now I am just over joyed to have been able to add rice to my "good" foods. Before that I was DYING for carbs!!! Now I feel much better and have stopped losing so much weight and have more energy. Whew! Now if I can only add eggs back in! Patience plays a big roll, though. If I want to "test-add" a new food ( like potatoes again, please!) it has to be just a tiny tiny bite or else I can be really sorry.

So wish me luck. I heard that during the healing process you can be going along fine in your regimine and all of a sudden you nose dive for no apparent reason, and everything gets so confused again. Here's to hoping that won't happen to me!!!!

Wow, bless your heart! I understand your journey. I wish that I could find someone who understands! I understand the healing thing. The going along just fine, not having any reactions, then reacting to what you just ate yesterday and going What! I have had to slowly over time add differnent foods back in. I have to watch my weight real close from going up. I had a rice diet for a while. It was a relief to find that I could eat it. It filled my tummy! Then I decided to add fish and had an anaphylactic reaction and discovered I'm allergic to fish now. Slowly I took a step forward and sometimes one back until I have taken many steps forward in this journey. I still have a lot to learn to take care of myself and my kids. In my testing we have found the answer to my mom's mysterious illness that she has had all her life. She will most likely be receiving the endoscopy soon for her definitive diagnosis and what has been ailing my dad and his parents. I'm convinced now that my grandmother on my dad's side died of celiac complications. They always said she died of her stomach issues and that I was born into it. I didn't know how right they were - I have double genes - one from my dad and one from my mom.

I wish you the best!

[fig girl]

Hi,

I've been gluten-free for 7 mths. and felt so much better for a while but now am discovering other food sensitivities (hopefully temporary) with eggs, tomatos, i think vinegar, hemp and dairy. I have gotten dizzy with a glutening and my feet, legs, arms and hands will go to sleep very easily (i guess that would be neurological but not sure if that's the same thing as going numb). I still have head fog and memory loss but do have days now when it's so much better. I have trouble pronouncing words sometimes and forgetting words. I just recently bought Nature's Plus sublingual B-12 herbal lozenges but it is cyanocobalamin instead of methylcobalamin - DarlinDeb - if you don't mind me asking, what brand of methylcobalamin do you take and where do you get it? I took 1/2 of one of the Nature's Plus yesterday and i think i was ok - i'm sure it takes a while of taking it to see any difference but i was a little scared to take it because it has so many other things in it (Dandelion root, sarsaparilla, raspberry, beet, fructose, acacia gum, guar gum, di-calcium phosphate, stearic acid, natural flavor and silica). I was in a hurry Fri. when i bought it from a health food store - they were about to close. My stomach was sore this morning but it has been all week , i'm thinking from eating rotel and/or cheddar cheese a week ago today - geez, i hope it goes away soon! It's better than it was though. Thanks for any info.

fig girl

[glutenfreewithease]

Hi,

I've been gluten-free for 7 mths. and felt so much better for a while but now am discovering other food sensitivities (hopefully temporary) with eggs, tomatos, i think vinegar, hemp and dairy. I have gotten dizzy with a glutening and my feet, legs, arms and hands will go to sleep very easily (i guess that would be neurological but not sure if that's the same thing as going numb). I still have head fog and memory loss but do have days now when it's so much better. I have trouble pronouncing words sometimes and forgetting words. I just recently bought Nature's Plus sublingual B-12 herbal lozenges but it is cyanocobalamin instead of methylcobalamin - DarlinDeb - if you don't mind me asking, what brand of methylcobalamin do you take and where do you get it? I took 1/2 of one of the Nature's Plus yesterday and i think i was ok - i'm sure it takes a while of taking it to see any difference but i was a little scared to take it because it has so many other things in it (Dandelion root, sarsaparilla, raspberry, beet, fructose, acacia gum, guar gum, di-calcium phosphate, stearic acid, natural flavor and silica). I was in a hurry Fri. when i bought it from a health food store - they were about to close. My stomach was sore this morning but it has been all week , i'm thinking from eating rotel and/or cheddar cheese a week ago today - geez, i hope it goes away soon! It's better than it was though. Thanks for any info.

fig girl

I've discovered other food allergies as well along this journey and many chemical sensitivities. Citric Acid, MSG, carageenan, sodium nitrite all give me similar stomach pains. I'll will get waves of pains in my stomach, kind of like you can tell the food has moved from my stomach to the entrance of the small intestine that double me over in pain. I told my husband that it is like labor contractions, except backwards. The contractions (waves of pain) are closer together at first and then further apart has it gets better. I try to stay away from any processed foods with preservatives, but every know and then I think I've been doing well and hope I can tolerate something and soon find out I can not. I'm getting better about not being so afraid of putting things in my mouth, however I'm still not wher Iwould like to be. Anyway when I started reacting to citric acid I kept questioning it b/c it is suppose to be gluten free, well in the US it is then I reearched and discovered it causes problems with MSG sensitive people like me, so you might want to try to eliminate it and see if it helps you.

Wish you the best!