Neurological Symptoms - Anyone Else?

[hollyres]

Hello Fellow Celiacs,

I figured out (on my own - of course) that I had Celiac Disease last October. Prior to that, I had very severe allergies to foods and mold. This led myself (and family) to always pin every issue I had on allergies, looking past the root cause, which was Celiac. Now I know that the Celiac was causing leaky gut and break down of the blood brain barriers, which allowed chemicals and such to pass straight through. I still can't eat much (raw veggies, chocolate, etc..., but; I am hoping that will change). I have only been on the diet correctly for 8 months.

I know when the Celiac launched itself: 23 years ago I was in the hospital for a week (I was in 10th grade) with swollen intestines and a mysterious illness that made my intestines inflamed...duhhhhhh! Now I have to repair 22 years of damage.

Here is my question: Does anyone else have a hard time balancing (I drop things, too), seeing right (my vision is completely affected!!!), talking, and thinking when they are "glutened?" It all seems to be neurological in nature, but frequently I cannot pinpoint where I was exposed to the gluten - which seems to be common among our kind This makes me question the orgin of my symptoms. However, I always swell like I am pregant and get the other common symptoms along with the "weird stuff." If I knew others had these issues, I could relax.

The other issue is this - the further away from eating gluten I get, the more severe my symptoms seem to be when I am exposed. Is that common? I can't even breath it without my body completely rebelling (no more Pizza Hut for me). Products that I have used for years are now becoming a problem (eyeliner). Is that also common?

While I thank God every day for my diagnosis, I am in constant conflict over my symptoms - are they related to this disease, or am I alone? I have felt so alone for so long, I can't imagine actually having others who experience the same issues.

I anxiously await replies. - Holly

[CarlaB]

Holly, c'mon over to the OMG I might be onto something thread ... you will find many there with your same issues!!! Don't read it all, just jump in and introduce yourself.

Yes, many become more sensitive to gluten once they get off of it.

I do get those neuro symptoms, but they are from my Lyme Disease, so I'll have to let other celiacs with neuro symptoms answer those questions for you. If you've been gluten-free for a long time and are not seeing improvement, I would start asking myself if there is also something else going on. Many of us here have more than one issue causing our trouble.

[Emily Elizabeth]

Holly,

I also have vision problems. It gets really blurry and I get dizzy and feel instantly "out of it." It's almost like I've been drinking, without the feel good buzz! I used to really notice balance problems before being diagnosed. I would literally stumble backward when simply standing still. My stomach always bloats up like I am pregnant. I also experience depression - which is not like me at all. Of course not fitting in your clothes and feeling stupid probably doesn't help!

I have been on the diet strictly for about 3.5 months. I also feel like I am reacting more intensely then I used to before going gluten free. I think I read in another thread that that is normal. I am very frustrated as well about the unknown glutening. It seems that I only get better for about 2 days, then get sick again. Last Monday, the only things I could think of was that I possibly breathed in oatmeal when pouring it from one container to another or my Amaranth Flakes cereal was contaminated (gluten free supposedly). Then this morning, I can't figure out what is causing it. I am questioning my planter's pecans and slivered almonds... possibly the Kraft Catalina sauce... my flax meal... I also have limited raw veggies. I have added back in dairy products though and am excited about that.

In case it is helpful, other symptoms I have are - foot cramping, D, a sort of pressure in my forehead (first sign sometimes), a small rash on the right side of my leg (when I get glutened badly) and I'm in the bathroom all the time!

I hope this helps you cope. I too like finding out that I'm not alone! Misery loves company.

Emily

Here is my question: Does anyone else have a hard time balancing (I drop things, too), seeing right (my vision is completely affected!!!), talking, and thinking when they are "glutened?" It all seems to be neurological in nature, but frequently I cannot pinpoint where I was exposed to the gluten - which seems to be common among our kind This makes me question the orgin of my symptoms. However, I always swell like I am pregant and get the other common symptoms along with the "weird stuff." If I knew others had these issues, I could relax.

[horsegirl]

Hi Holly,

I too have neurological symptoms from gluten, more so than GI symptoms.

I was actually (mis) diagnosed with fibromyalgia last December, because my pain, fatigue, & weakness were so severe, & the rheumatologist didn't know what else it could be. I found the gluten free diet completely by my own research, & after going gluten free in 1/07 my neuro symptoms were SO much better! I recently completed a 6-week "gluten challenge" in order to get "accurate" blood tests & intestinal biopsies done. During that time, I got sicker every day, to the point where I was in severe pain all over my body, was weak, my arms felt so heavy I could barely move them, had trouble thinking & coming up with the right words to use (frustrating!!), & was exhausted. I also would drop things & tripped more than usual. At one point I questioned if I might even be having a stroke, because using my computer mouse was almost more than my arms could handle doing.

My Enterolab results showed I have the Double DQ-1 gene for gluten intolerance, which I've learned often results in severe neurological issues from gluten. The blood tests & biopsy were all negative for Celiac (so I have "non-Celiac gluten intolerance"). Since I've been gluten free again (17 days now!) my neuro symptoms are settling down again, though I still have flares in the pain & fatigue.

I'm starting a gluten-free AND casein-free diet today (I'm also intolerant to casein per Enterolab),

& later will look at soy & corn as possible triggers, as lately I've eaten a lot of those & my neuro symptoms seem to get worse.

So, a long answer to your questions I know. But, you definitely ARE NOT ALONE IN THIS!!

And, yes, any accidental glutening will most likely result in a bigger reaction since you've been gluten free awhile now...our bodies really hate that stuff!

Good luck!

Martha

[Joni63]

I also have the neurological symptoms more than the intestinal problems. I never had D, but get constipation from gluten. It has been so much better on the gluten free diet, but it's also hard to pinpoint an accidental glutening. My vision was great and I felt wonderful the first week and 1/2 off gluten, but have felt lousy ever since. My vision has been horrible and changes constantly. I've been having problems in my right eye, but today both eyes are just as bad. I did make an appointment with the Optometrist today, just in case anything else is going on.

Some other neuro symptoms I've had are tingling of the hands and feet, which really felt more like pins and needles, but now is only a dull numbness. I sometimes feel totally off balance and can't judge distance well. I would also stumble backwards when standing still like Emily Elizabeth. My sinus problems were horrible pre-gluten free and now have been really good and I haven't taken any allergy meds since Aug. 1st. I did start them back up today just to see if they help my vision problems, but not because of nasal stuffiness. I've had heart palpitations all my life, but have had none since gluten-free. I've become super senstivie to caffeine and only drink decaf coffee's or teas. The caffeine will completely worsen any neurological symptoms so I've really cut back. It's hard to get a decent nights sleep, so I'm trying an eye mask and ear plugs and drinking sleepy time tea for that.

My stomach also puffs up and the fatigue is horrible. It's very hard to keep up with the house and pets and try to exercise too. Everything wears me out, even going to the grocery store. Last week I left and didn't get everything I was there for because I felt so bad.

So Holly, you are not alone. Like you, I'm thankful that my diasnosis is Celiac and it's manageable, but I didn't have a clue until I started reading this forum how many of the things I've put up with for years, are a part of this disease.

[GFhopeful]

me too... before diagnosis the dizziness was becoming worse and worse. i had tingling hands and feet, jerks that would wake me up at night, seeing stars, heart racing to name a few. i also had migraine headaches for several years. it was not until around 2-3 month before diagnosis that i had ANY GI symptoms at all. since going gluten-free, all of these are slowly getting better.

i would really try not to think that something else is wrong as this became a major worry of mine. recovering from Celiac's for me was a slow process that had many old symptoms and some new ones (i just started having reflux around a week ago and thought something else major was going wrong). but from what I've read, it takes time to heal and especially seems true with those with neuro symtoms. good luck and worry is not good for anything.

[marciab]

Me, too. My nuero symptoms started getting better after 7 months on the diet and my ataxia (heavy legs, arms, balance issues, etc) were gone after one year. My ADHD symptoms were better the first day, but have come back often.

Now I get the nocturnal myoclonus (jerking when going into REM) and insomnia back the first nite after I have been glutenned and I am still defining what else happens. This last time, my eyes have been twitching on and off for about 2 weeks and I had quite a bit of trouble speaking. It appears to have gotten better in the last couple of days.

I've never gotten the ataxia back. I don't know if that is because I walk everyday ...

My myoclonus and insomnia have never gotten as bad after going gluten-free as it was prior. Of course it was every nite back then too. My Raynauds is worse and my cognitive problems are more noticeable, but that's probably because they aren't with me all the time ...

Marcia

[wowzer]

You aren't alone. I have been gluten free since the beginning of the year. I have become more and more sensitive to gluten now. It seems now even CC will get me. Thinking back I can remember having trouble getting words out, made me feel stupid. My eye used to twitch really bad. And my legs went nuts. Those symptoms went away after going gluten free. Gluten will cause them for me now. It seems sometimes the more careful I think I'm being, something dumb will get me. It is frustrating. I wanted to make my hubby stuffed pork chops for dinner tonight. I took care of mine and put it in the oven. I made his, washed my hands, cleaned the kitchen, but I still think I somehow got glutened. Did the same thing last week. I was feeling guilty because he says I never bake for him. I decided to make a pecan pie. I did by a premade crust so I didnt have to breath in flour. I was careful to clean up, but still felt glutened after. I truly would like to ban gluten from this house, but since I don't have an official diagnosis I don't see that happening. My other problem is my son works for a pizza place. I'm sure he leaves me a gluten trail. I refuse to wash his clothes. Hang in there. You aren't alone. Wendy

[Ras Mike]

You aren't alone. I have been gluten free since the beginning of the year. I have become more and more sensitive to gluten now. It seems now even CC will get me. Thinking back I can remember having trouble getting words out, made me feel stupid. My eye used to twitch really bad. And my legs went nuts. Those symptoms went away after going gluten free. Gluten will cause them for me now. It seems sometimes the more careful I think I'm being, something dumb will get me. It is frustrating. I wanted to make my hubby stuffed pork chops for dinner tonight. I took care of mine and put it in the oven. I made his, washed my hands, cleaned the kitchen, but I still think I somehow got glutened. Did the same thing last week. I was feeling guilty because he says I never bake for him. I decided to make a pecan pie. I did by a premade crust so I didnt have to breath in flour. I was careful to clean up, but still felt glutened after. I truly would like to ban gluten from this house, but since I don't have an official diagnosis I don't see that happening. My other problem is my son works for a pizza place. I'm sure he leaves me a gluten trail. I refuse to wash his clothes. Hang in there. You aren't alone. Wendy

I just went gluten free a month ago.I had horrible stomach pains for years, then any type of veg. oil I get on my hands makes them itch our if I eat anything made with oil.If I itch them they swell turn red and hurt.Since I quit gluten my hands fall asleep and it feels like my head falls asleep I get dizzy.

[hollyres]

Everyone is making me feel so much better! I realize that allergies to mold give me many of my symptoms, but it is clear to me now that it is the Celiac that drives the bus! You may wonder why that helps. Well, we just moved into a new house and I am scared to death it is the problem. Of course we do not want to sell and move again! All of the issues, especially the heavy legs/arms is a common symptom of mine, and it was very frightening. I have always thought it might be MS. Let's face it, Celiac beats many of the other diseases out there by a mile. It also helps to know that at only 7 months into the diet, I still have a long way to get to heal. I have glutened myself so many times that I probably keep setting myself back.

Thanks to all those who replied! Keep them coming!!!!!

[hathor]

I won't repeat what others have said. I'll just say that I too find myself more sensitive to gluten these days and among my symptoms are balance difficulties and brain fog.

Definitely check out possibilities for cross contamination in your kitchen or in any food you regularly eat. (My husband cannot remember that I've carefully scrubbed the toaster oven so that one side can have gluten and the other is mine. Grrr ... At least I've trained him about not getting crumbs in things. I find I often can't take food that is made on the same equipment as wheat products; unfortunately, this sort of label is voluntary. So I'm sure some of my inexplicable reactions could be do to CC I don't know about -- one reason I hang out on this forum. People share what they find out.) Also check out your personal care items and contact manufacturers, if necessary, for any medicine or supplements you take (these don't have to be labeled for allergens, as you probably know). I found out that my hair gel contained wheat and my vitamins contained soy. I have been feeling really good since I changed hair care products in particular, even though my family thinks I'm just paranoid

If your symptoms come and go, you might try a food diary. You may have other foods you cannot tolerate. Dairy (casein, lactose, or both) is a common second problem, and many have difficulty with soy. Do I understand you correctly, that chocolate is a problem? Check out ingredients -- it could be milk or soy in there that are the culprits. I really sympathize with anyone who can't eat it. I had a reaction yesterday myself when before I haven't. Enterolab said that soy lecithin would be OK, but maybe I can't handle it these days. (Or that brand or batch was CCed).

I think as time goes on and with the help of everyone here, you will get feeling better and better. And you certainly will learn you aren't alone in whatever you are experiencing. And, hey, if you need to share what's happening with your poo, this seems to be about the only place you can do so

[sickchick]

I fall more when I have NOT been drinking... (LOL!) I am dizzy on a daily basis. I drop things daily, I get worse after I exercise for some reason. I chalk it up to the Celiac (I am currently waiting to b tested)

Until I came here to this forum I thought I was the only one! LOL!

Nice to meet you

lovelove

sickchick

[hollyres]

Thank you so much for your reply! I drive my husband crazy with all my talk of "poo!" I am a seeker and feel very comfortable on this board, as it is obvious that I am in good company. I want so desperately to be in control, and feel I have none. I have two teenage sons who have no concept of CC. I feel like a maniac, going around preaching on crumbs. I am scared to death on a regular basis that I will have a reaction. It hurts so much. I have sat with tears in my eyes and ice packs on my guts, wishing I could reverse what was happening, but with no easy or quick answers. However, my entire life has been a health struggle, or more like an investigation into a mystery with no resolution, only clues that lead to more questions. I am tired, depressed, but committed at the same time. I was so happy when I finally figured out it was Celiac, now I have to live with the diet. At first I was so strong and determined, but now, I am feeling the rope around my neck. I know I can do it! I have to because there is no changing it. Things will get easier - and now I have a support group. One good thing - my muscles are coming back. Three months ago, one could see every rib in my chest. Without any effort, the muscle is returning in my chest and upper arms. Weird! I keep looking at them in shock. My nails are long and hard. My vision is better. My poop is amazing (most of time). I used to go a year without cutting my toe nails (no need); now, I cut them all the time. Life is good.

Holly

I won't repeat what others have said. I'll just say that I too find myself more sensitive to gluten these days and among my symptoms are balance difficulties and brain fog.

Definitely check out possibilities for cross contamination in your kitchen or in any food you regularly eat. (My husband cannot remember that I've carefully scrubbed the toaster oven so that one side can have gluten and the other is mine. Grrr ... At least I've trained him about not getting crumbs in things. I find I often can't take food that is made on the same equipment as wheat products; unfortunately, this sort of label is voluntary. So I'm sure some of my inexplicable reactions could be do to CC I don't know about -- one reason I hang out on this forum. People share what they find out.) Also check out your personal care items and contact manufacturers, if necessary, for any medicine or supplements you take (these don't have to be labeled for allergens, as you probably know). I found out that my hair gel contained wheat and my vitamins contained soy. I have been feeling really good since I changed hair care products in particular, even though my family thinks I'm just paranoid

If your symptoms come and go, you might try a food diary. You may have other foods you cannot tolerate. Dairy (casein, lactose, or both) is a common second problem, and many have difficulty with soy. Do I understand you correctly, that chocolate is a problem? Check out ingredients -- it could be milk or soy in there that are the culprits. I really sympathize with anyone who can't eat it. I had a reaction yesterday myself when before I haven't. Enterolab said that soy lecithin would be OK, but maybe I can't handle it these days. (Or that brand or batch was CCed).

I think as time goes on and with the help of everyone here, you will get feeling better and better. And you certainly will learn you aren't alone in whatever you are experiencing. And, hey, if you need to share what's happening with your poo, this seems to be about the only place you can do so

[gfpaperdoll]

don't underestimate the value of taking B12 everyday...

I can tell emotionally if I miss one day...

[hollyres]

I feel it is only right to share the root of my recent neurological issues. We found hidden mold in the shower I was using. I am very allergic. One problem with having multiple issues is when you can't distinguish between the causes of one symptom from another. There are cross-overs.

I still think Celiac is WHY I am so sensitive to mold. It is the root of all evil.

[TxPillowLady]

Here is my question: Does anyone else have a hard time balancing (I drop things, too), seeing right (my vision is completely affected!!!), talking, and thinking when they are "glutened?" It all seems to be neurological in nature, but frequently If I knew others had these issues, I could relax.

While I thank God every day for my diagnosis, I am in constant conflict over my symptoms - are they related to this disease, or am I alone? I have felt so alone for so long, I can't imagine actually having others who experience the same issues.

Holly,

I was diagnosed in June & went gluten-free after my biopsy.

What a relief to know that I'm not "crazy"! and am just starting to see that I'm not alone either.

I've had my cold feet and hands for years plus my hands go numb when they are over my head - like washing my hair in the shower. That's gotten better. My balance is better - the room doesn't spin anymore and I don't take Claritin-D daily! My depression has gotten better, but I have cried due to frustration of what favorite things I can't eat anymore. I've read that we go through mourning for foods. It's sadly true.

I've been severely anemic for years and also am managing a pituitary adenoma (overactive prolactin hormone). I got mono when I was 5 and at 18, which then led to chronic fatigue and Epstein Barr. All this because of gluten! I recently read that immunological diseases are caused by an overactive immune system, not a weak one. Makes sense in my health history.

My migraine headaches have decreased to 1 a mo. from 1 a week. The biggest change is my energy level and outlook on life. People tell me I'm happy again and my husband has his wife back. Not all is 100%, that will take many years to repair, but life overall is so much better.

Thanks for sharing...I know I need support too, especially to get through the "day after accidently eating gluten"-puts me right back into the self conscious, foggy, bummer mood.

Tara

P.S. Is it pathetic for a grown-up to cry (in disbelief) at finding a WHOLE frozen food case full of frozen pizzas, chicken nuggets, tortillas, and many breads, ALL Gluten-free!

[x1x-Stargirl-x1x]

hello.

yes i have severe neuroligical (sp?) problems when i eat gluten or milk. apart from having partial epilepsy (hallucinations to be precise.) i will get so depressed to the point that i cry all the time for small reasons, dizzy, i won't see well, and i also have other physical symptoms.

if you have a vivid imagination and you are constantly hearing the phone ringing when it's not or the dryer or washer going when it's not it may be you are hallucinating.

we didn't know i had epilepsy because of my celiac until i had a HUGE hallucination. before then i was pretty young so we thought it was just my imagination.

some symptoms i had were the phone or dryer and also thinking i see animals out of the corner of my eye and seeing things i had had dreams about.

i never knew i was hallucinating until i actually had a full out hallucination. it was terrifying. i hid under the table and refused to talk. i heard people talking the washer going. i saw dogs out in my back yard and i saw terrifying things from my dreams. it's horrible talking about it.

you might want to get a MRI and an EEG done to see if you have unusual brain activity.

yes, sorry i might have terrified you at the possiblility.

hope it's not so for you, but i thought i should tell you cause it all started with depression and sight.

.::STARGIRL::.

[hollyres]

Stargirl,

Please don't worry about scaring me. I have been to hell and back, and coming out on the other side. I have had the same symptoms you have (hallucinating, hearing things) and they were all related to mold. My theory is this: the Celiac broke down my ability to fight the mold and that is how it enters my blood as a toxin and passes into my brain. I found out that the neurological issues I have been having lately was to mold in the shower wall, not the Celiac. While I know it contributes to my issues, it isn't the whole picture.

hello.

yes i have severe neuroligical (sp?) problems when i eat gluten or milk. apart from having partial epilepsy (hallucinations to be precise.) i will get so depressed to the point that i cry all the time for small reasons, dizzy, i won't see well, and i also have other physical symptoms.

if you have a vivid imagination and you are constantly hearing the phone ringing when it's not or the dryer or washer going when it's not it may be you are hallucinating.

we didn't know i had epilepsy because of my celiac until i had a HUGE hallucination. before then i was pretty young so we thought it was just my imagination.

some symptoms i had were the phone or dryer and also thinking i see animals out of the corner of my eye and seeing things i had had dreams about.

i never knew i was hallucinating until i actually had a full out hallucination. it was terrifying. i hid under the table and refused to talk. i heard people talking the washer going. i saw dogs out in my back yard and i saw terrifying things from my dreams. it's horrible talking about it.

you might want to get a MRI and an EEG done to see if you have unusual brain activity.

yes, sorry i might have terrified you at the possiblility.

hope it's not so for you, but i thought i should tell you cause it all started with depression and sight.

.::STARGIRL::.

[x1x-Stargirl-x1x]

Stargirl,

Please don't worry about scaring me. I have been to hell and back, and coming out on the other side. I have had the same symptoms you have (hallucinating, hearing things) and they were all related to mold. My theory is this: the Celiac broke down my ability to fight the mold and that is how it enters my blood as a toxin and passes into my brain. I found out that the neurological issues I have been having lately was to mold in the shower wall, not the Celiac. While I know it contributes to my issues, it isn't the whole picture.

you're probably right, cause that's exactly the case withme, but with milk. i don't understand it fully, but it makes me not able to fight milk then it breaks down some barrier in my brain and i have hallucinations.

.::STARGIRL::.

[dally099]

ah yes, right after i eat something with gluten i get brain fog and oh sooooo tired and a headache. it accually takes me about a day and a half to get the D that comes with the gluten.