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Gluten And Neurological Effects

brain fog weakness vertigo neuropathy anxiety

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#1 Bnay14

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Posted 01 September 2013 - 06:32 AM

I went to the hospital last week after collapsing, the whole room was spinning, my legs weak and could barely move them, and had a panic attack out of fear of what was going on. The dr without examining me explained that it was sinus pressure and vertigo as I always feel pressure in my head between my eyes whenever I have these spells. There are times that my muscles involuntarily twitch and I can hardly see straight. I have the worst brain fog that I almost feel outside of my body. This has always given me anxiety attacks because it frightens me. I went to a neurologist a year ago just said they were migraines. I thought I was having seizures so I got an EEG and an MRI. Came back ok. I have been under a lot of stress going through a divorce with a 2 yr old and 1 yr old doing everything on my own for over a yr. The next day after going to the hospital I had instant oatmeal the same thing I had before I went to the hospital. I experienced the exact same thing. I tried it again the following morning and had the same exact symptoms. I have always known that what I feel correlates with what I ate but I never really payed attention or ever even thought it could be some type of allergy or sensitivity to gluten. After researching gluten intolerance I feel a lot of the neurological symptoms and not as bad as the intestinal problems. This seems to be getting worse for me and I am curious to see if anyone has these same reactions to gluten. I am getting tested in a week so hopefully I can get some answers because I don't know how much longer I can take this.
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#2 emilykay405

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Posted 01 September 2013 - 08:34 AM

Having those kinds of attacks are HORRIBLE. I have had something similar. For a few weeks after I would eat lunch (normally a bread filled meal) I would start to get brain fog and have this tingly/warm feeling in my arms and legs. Not long after my vision would change; everything would get really far away and blurry. The same far off feeling would happen with my hearing, too. The spell itself takes about 10 minutes or so and I never actually lose consciousness but I definitely feel a major energy drain for 2-3 hours afterward and still am not back to normal until the next day.

 

The first thing my doctor did was get me to a Cardiologist to check on my heart. Everything is fine except that he is changing around my meds. Apparently my internist (that I don't see anymore) put me on some heavy diuretic for my Edema and that's part of what's causing my rapid heart rate.

 

In the middle of the cardiologist visits and testing I finally got fed up with my stomach issues and my doc sent me to a GI doc. My endoscopy and colonoscopy are scheduled in about 2 weeks. In the mean time I've done a ton of research. I haven't found anything yet that connects fainting (or near fainting..) with Celiac BUT after thinking about it I can see how it could be connected. Here's why. Think about what happens to a diabetic when they have too much sugar...they can actually go into a coma if it's bad enough. I know for me I get a euphoric feeling and then plummet to the depths of what feels like Hell when I eat too much sugar. Wouldn't it stand to reason that if you're body can't cope with gluten and you give it a mega dose that it could cause some kind of fainting like spell? That makes total sense to me. Of course, I'm no doc...but there has to be a connection.


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#3 Jake'sMom87

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Posted 01 September 2013 - 10:40 AM

I have the same as what you both describe. I'm not diagnosed but am having the celiac tests on Wednesday. These attacks are horrible! It starts by me not being able to feel my legs or arms, blurry vision and I almost feel like I'm not breathing. It's different than a panic attack for sure. Mine happen when I'm active so I went to cardiologist and after testing they found no abnormalities. After I eat I have minimal discomfort in my stomach, but I get tingling and burning sensations in my legs and sometimes my face. I get super foggy brained after I eat and extremely tired. But I haven't been able to pinpoint a certain food. Lactose intolerance runs on my dad's side of the family and I have that to some extent. I also can't do eggs. The neurological symptoms are the worst I have been dealing with them for years. Update when you get your tests results please...it would be nice if we could connect these issues to something.
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#4 christianmom247

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Posted 01 September 2013 - 02:55 PM

Before I was diagnosed with celiac and went gluten free, I would get attacks, usually after eating, where I things would start spinning and I'd get really dizzy and start sweating.  The last time I actually passed out and my blood pressure went so low they couldn't even get a reading on it.  The doctors couldn't find any cause for it, but it hasn't happened a single time in the more than a year that I've been gluten free. 


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#5 Jake'sMom87

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Posted 01 September 2013 - 04:36 PM

Before I was diagnosed with celiac and went gluten free, I would get attacks, usually after eating, where I things would start spinning and I'd get really dizzy and start sweating.  The last time I actually passed out and my blood pressure went so low they couldn't even get a reading on it.  The doctors couldn't find any cause for it, but it hasn't happened a single time in the more than a year that I've been gluten free.


That's great to hear! I forgot about the sweating, that happens to me too. Glad you're feeling better!
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#6 Bnay14

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Posted 01 September 2013 - 05:49 PM

Thank you everyone for your replies. When I was pregnant it was severe I felt "high" nearly all the time. I would get sweaty and I would have to eat more and more sugar so I could stop the crazy feeling of about passing out. But then after I would eat I would feel "high" because of such bad brain fog. I know it has something with what I eat but the doctors thought it was my hormones creating bipolar episodes. It's been very frustrating. Another dr told me anxiety can create these feelings...rather it being psychological I know it is physiological bc this isn't normal for anyone to feel and it's so easy to be mislead by drs and it has made me feel really insecure bc of what some drs have said. I will update you all when I get tested. I have the understanding that you shouldn't cut gluten out until you get tested and there is a possibility for the test to be negative and if that's the case and you cut gluten out that's when you can see if it has an impact if you are just gluten intolerant right? One other thing is if you experience the same thing but whenever I eat food that is gluten free I crave sugar so bad. Every time I eat something I feel like I have to have a cookie or cake or whatever. I like to eat healthy and exercise I would say I am healthy for the most part that's why all of this is beyond aggravating. Thank you all for your input!!
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#7 Lock

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Posted 02 September 2013 - 05:00 AM

Giving up sugar at the same time you give up gluten will probably do wonders for you. You are right to see a connection between the two. What got me thinking I might have a wheat problem was going "low carb" and cutting out most breads and sugars of any kind. I had been in that Hell emilykay describes. I was on a huge sugar/gluten roller coaster. It got real bad, to the point I would pick out one food, like sugar cookies, and eat nothing but that, six times a day, months at a time. I was drowning in a brain fog and deep depression and anxiety. I was dimly aware that I had an eating problem, but I was thinking it was a psychological "eating disorder".

 

I finally sunk to the lowest of lows, terrified I would get diabetes, thinking it was all a sugar issue, in desperation I bought a book on paleo eating and decided one Friday to delete all carbs from my diet. I consumed only meat and fats. On Sunday afternoon, about 3 o'clock, it was like a switch flipped. I will never forget that moment, I was lying in bed and it happened literally like a finger snap. I went from nearly suicidally depressed to HAPPY. I got up and walked around expecting it to go away but it never did. It was a peace and happiness like I don't remember ever feeling in my life. It was like, THIS is what normal people feel all the time?! Good Lord, I have lived my whole life fighting and struggling just to get through each day with a brain screaming at me that things are all wrong, and thinking that was normal, because it was all I had ever known. But THIS is what I am supposed to feel like? Life actually can feel good??  I was finally motivated to start researching my situation - I was on to something! - and eventually got tested for the Celiac gene, and when it came back that I have the strongest set of Celiac DNA possible, I really knew I was on to something and at this point I am sure it was giving up most gluten as well as sugar that turned me around.

 

But to answer your original post, yes, I have had neurological symptoms for decades. Tingling in hands and feet, neuropathies, RSD, migraines, severe brain fog with most tests coming back "normal" and doctors telling me nothing is wrong with me. I've had spinal taps, MRI's you name it. Hearing loss, ringing in the ears, in recent years yes, dizziness that I think is connected to inner ear neuro damage. Thank God that I have some good doctors who have believed in me all these years, who know I am not faking it, even though they could not pin a diagnosis on me. I don't blame them for not thinking of Celiac, their medical education is what is at fault, in the U.S. we didn't know Celiac was this common until 2003, long after I had been doing the rounds of doctors. I finally ended up with "fibromyalgia" as well as some "real" autoimmune disorders such as atopic dermatitis.

 

I have hearing loss and eye problems. These are actually "neurological" although they fall under the ENT and ophthalmology definitions of medicine. I am convinced that 57 years of eating gluten caused neurological damage in many of my body's systems. I had my first migraine around 16 years of age. My entire primary school experience was Hell. Brain fog and social anxiety, looking back  if I were a child today I probably would be diagnosed with Aspberger's or something. I was eating cereal for breakfast and sandwiches for lunch, and feeling like I was dying all day long. But I managed to succeed in school and graduate college despite everything. I got married and raised a family, dealing with sicknesses the whole of my adulthood. But never anything they could pin down. The most heartbreaking thing of all is that my poor kids were raised by a sick, lethargic, grumpy mom. And I know I have passed a Celiac gene to each of them. But at least now I have the information to give them, and they have a chance to avoid some of the permanent damage that I have because they are still young.

 

I only one week ago went completely 100% gluten free and we will have to wait to see if my rashes and neurological symptoms improve, but my brain fog, anxiety and depression is already 95% better. I can't say for sure if gluten if the cause of your problems, and I cannot even say for sure that it was the cause of mine. At this point I cannot go back and "experiment" to sort out whether it was the gluten, the sugar, or whatever else I cut out that saved me, because I cannot face going back to that dark horrible place. It is like the sun has risen on a life of 57 years of gloom and I cannot go back.

 

But yes I think it was a deadly combination of sugar and gluten. For me, both those substances are addictive. I have no doubt I was careening toward death, and still might be, if my immune system has malfunctioned enough to give me a cancer that isn't yet detected. But I am optimistic about my health for the first time in my life. Discovering Celiac is turning out to be the best thing that has ever happened to me!


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#8 emilykay405

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Posted 02 September 2013 - 05:22 AM

Thank you everyone for your replies. When I was pregnant it was severe I felt "high" nearly all the time. I would get sweaty and I would have to eat more and more sugar so I could stop the crazy feeling of about passing out. But then after I would eat I would feel "high" because of such bad brain fog. I know it has something with what I eat but the doctors thought it was my hormones creating bipolar episodes. It's been very frustrating. Another dr told me anxiety can create these feelings...rather it being psychological I know it is physiological bc this isn't normal for anyone to feel and it's so easy to be mislead by drs and it has made me feel really insecure bc of what some drs have said. I will update you all when I get tested. I have the understanding that you shouldn't cut gluten out until you get tested and there is a possibility for the test to be negative and if that's the case and you cut gluten out that's when you can see if it has an impact if you are just gluten intolerant right? One other thing is if you experience the same thing but whenever I eat food that is gluten free I crave sugar so bad. Every time I eat something I feel like I have to have a cookie or cake or whatever. I like to eat healthy and exercise I would say I am healthy for the most part that's why all of this is beyond aggravating. Thank you all for your input!!

 

Yes, you do need to stay on gluten until you get tested. I crave sugar all the time, too. I eat candy like a 6 year old set free in a candy store would. You may want to have your A1C checked for blood sugar issues. It's entirely possible you are hypoglycemic (essentially your body overreacts to sugar and produces too much insulin). I was that way for years but I could never stop the sugar cycle. The only time I did was in 9th-10th grade and I noticed a HUGE difference especially sweating. I can remember in middle school thinking, "If I ever stop eating this stuff I'll have the opposite of diabetes." Turns out, I was right. Fast forward 15 years and I'm pre-diabetic. I have a feeling that once I get off gluten and sugar things will even out.  


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#9 Lock

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Posted 02 September 2013 - 06:23 AM

Yes, you do need to stay on gluten until you get tested. I crave sugar all the time, too. I eat candy like a 6 year old set free in a candy store would. You may want to have your A1C checked for blood sugar issues. It's entirely possible you are hypoglycemic (essentially your body overreacts to sugar and produces too much insulin). I was that way for years but I could never stop the sugar cycle. The only time I did was in 9th-10th grade and I noticed a HUGE difference especially sweating. I can remember in middle school thinking, "If I ever stop eating this stuff I'll have the opposite of diabetes." Turns out, I was right. Fast forward 15 years and I'm pre-diabetic. I have a feeling that once I get off gluten and sugar things will even out.  

I was so all about the birthday cake my whole life. You could have not given me any presents at all, as long as I had that cake, it was what I looked forward to all year. I'd eat all the disgusting icing flowers. I'd go to people's weddings JUST to have a piece of the cake. You are right on about the pre-diabetes, I've got it also, the A1C was creeping up. Part of what scared me into finally doing something. My dad had his leg cut off partly due to diabetes, partly to smoking cigarettes. Yes, getting off that sugar roller coaster is probably the 2nd most important thing you can do for your health, if not smoking is first. Quitting gluten might be third. Or first, if you look at it another way. What about all those 90 and 100 year olds who smoked their whole lives and never got cancer? Could it be they don't have Celiac and hence have a healthy cancer-fighting immune system? Not saying it's ok to smoke if you don't have celiac, just sayin....


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#10 IrishHeart

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Posted 06 September 2013 - 12:02 PM

The link between celiac, gluten and neurological symptoms is well established (and stress can certainly exacerbate and even trigger celiac in pre-disposed individuals.  

 

I had a dozen or so nuero symptoms (in my list of about 65 symptoms) because of long, unDxed celiac and I can attest to all of the sensations, pain, parasthesia, and the ataxia,  crippling vertigo, muscle weakness, etc. etc.  as well as the uncharacteristic anxiety, panic and depressive thinking

that also can result from malabsorption.

 

And frankly, they can check your heart and your brain until the cows the come home, then declare you "fine" (or worse, say "it's all in your head" and send you to a psychiatrist) but the truth is, if your symptoms are the result of celiac, you are "not fine" and you are not making things up and you are certainly not going to get well by them symptom-treating you with drugs.

 

This is often the case--we are told it is psychological when it is physiological and organic in nature.

Vitamin deficiencies,  for example, can create a whole host of symptoms.. Low blood sugar, thyroiditis,

heart palpitations, neurological symptoms, muscular atrophy and even type II diabetes can resolve in time  off gluten (mine did) 

 

The symptoms you all describe are very real.

 

There are over 300 symptoms associated with gluten intolerance/celiac.

 

Here:

 

http://www.curecelia...SymptomList.pdf

and for Pub Med articles on Neurological symptoms, look here:

 

https://sites.google...tationsofgluten

 

 

If any of you are waiting for a celiac panel, DO NOT STOP eating gluten until your testing is complete, otherwise your test results may be invalid.

Best wishes to you all--and do not give up your search to find answers and get well. I've been in your shoes.


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#11 LisaRae28

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Posted 07 September 2013 - 11:16 AM

I've also had quite a few inexplicable neurological issues for quite some time now. Almost 20 years ago I had a team of docs including some great neurologists looking for reasons behind my migraines and other various symptoms as a kid. Since diagnosed and going gluten free most of these things have vastly improved but I still struggle with a lot of those things which I'm starting to sort out with the docs now. I also have an iron deficiency issue which seems to be very much related to those issues when my iron count is low. If your body is able to absorb it and your stomach can handle it i would at the very least suggest attempting iron supplements to see if it helps any... It may at least make it more bearable until you can get the testing done because the gluten most definitely does all sorts of those things also... Good luck n keep us updated :)
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#12 Jonvon

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Posted 31 December 2013 - 02:34 PM

Giving up sugar at the same time you give up gluten will probably do wonders for you. You are right to see a connection between the two. What got me thinking I might have a wheat problem was going "low carb" and cutting out most breads and sugars of any kind. I had been in that Hell emilykay describes. I was on a huge sugar/gluten roller coaster. It got real bad, to the point I would pick out one food, like sugar cookies, and eat nothing but that, six times a day, months at a time. I was drowning in a brain fog and deep depression and anxiety. I was dimly aware that I had an eating problem, but I was thinking it was a psychological "eating disorder".
 
I finally sunk to the lowest of lows, terrified I would get diabetes, thinking it was all a sugar issue, in desperation I bought a book on paleo eating and decided one Friday to delete all carbs from my diet. I consumed only meat and fats. On Sunday afternoon, about 3 o'clock, it was like a switch flipped. I will never forget that moment, I was lying in bed and it happened literally like a finger snap. I went from nearly suicidally depressed to HAPPY. I got up and walked around expecting it to go away but it never did. It was a peace and happiness like I don't remember ever feeling in my life. It was like, THIS is what normal people feel all the time?! Good Lord, I have lived my whole life fighting and struggling just to get through each day with a brain screaming at me that things are all wrong, and thinking that was normal, because it was all I had ever known. But THIS is what I am supposed to feel like? Life actually can feel good??  I was finally motivated to start researching my situation - I was on to something! - and eventually got tested for the Celiac gene, and when it came back that I have the strongest set of Celiac DNA possible, I really knew I was on to something and at this point I am sure it was giving up most gluten as well as sugar that turned me around.
 
But to answer your original post, yes, I have had neurological symptoms for decades. Tingling in hands and feet, neuropathies, RSD, migraines, severe brain fog with most tests coming back "normal" and doctors telling me nothing is wrong with me. I've had spinal taps, MRI's you name it. Hearing loss, ringing in the ears, in recent years yes, dizziness that I think is connected to inner ear neuro damage. Thank God that I have some good doctors who have believed in me all these years, who know I am not faking it, even though they could not pin a diagnosis on me. I don't blame them for not thinking of Celiac, their medical education is what is at fault, in the U.S. we didn't know Celiac was this common until 2003, long after I had been doing the rounds of doctors. I finally ended up with "fibromyalgia" as well as some "real" autoimmune disorders such as atopic dermatitis.
 
I have hearing loss and eye problems. These are actually "neurological" although they fall under the ENT and ophthalmology definitions of medicine. I am convinced that 57 years of eating gluten caused neurological damage in many of my body's systems. I had my first migraine around 16 years of age. My entire primary school experience was Hell. Brain fog and social anxiety, looking back  if I were a child today I probably would be diagnosed with Aspberger's or something. I was eating cereal for breakfast and sandwiches for lunch, and feeling like I was dying all day long. But I managed to succeed in school and graduate college despite everything. I got married and raised a family, dealing with sicknesses the whole of my adulthood. But never anything they could pin down. The most heartbreaking thing of all is that my poor kids were raised by a sick, lethargic, grumpy mom. And I know I have passed a Celiac gene to each of them. But at least now I have the information to give them, and they have a chance to avoid some of the permanent damage that I have because they are still young.
 
I only one week ago went completely 100% gluten free and we will have to wait to see if my rashes and neurological symptoms improve, but my brain fog, anxiety and depression is already 95% better. I can't say for sure if gluten if the cause of your problems, and I cannot even say for sure that it was the cause of mine. At this point I cannot go back and "experiment" to sort out whether it was the gluten, the sugar, or whatever else I cut out that saved me, because I cannot face going back to that dark horrible place. It is like the sun has risen on a life of 57 years of gloom and I cannot go back.
 
But yes I think it was a deadly combination of sugar and gluten. For me, both those substances are addictive. I have no doubt I was careening toward death, and still might be, if my immune system has malfunctioned enough to give me a cancer that isn't yet detected. But I am optimistic about my health for the first time in my life. Discovering Celiac is turning out to be the best thing that has ever happened to me!


Has the dizziness gotten better after more time. I'm constantly dizzy and only Cf for about 2 weeks. I really hope cutting out gluten gets ride of my dizziness.
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#13 Rissa019

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Posted 10 January 2014 - 05:04 PM

Having those kinds of attacks are HORRIBLE. I have had something similar. For a few weeks after I would eat lunch (normally a bread filled meal) I would start to get brain fog and have this tingly/warm feeling in my arms and legs. Not long after my vision would change; everything would get really far away and blurry. The same far off feeling would happen with my hearing, too. The spell itself takes about 10 minutes or so and I never actually lose consciousness but I definitely feel a major energy drain for 2-3 hours afterward and still am not back to normal until the next day.

 

The first thing my doctor did was get me to a Cardiologist to check on my heart. Everything is fine except that he is changing around my meds. Apparently my internist (that I don't see anymore) put me on some heavy diuretic for my Edema and that's part of what's causing my rapid heart rate.

 

In the middle of the cardiologist visits and testing I finally got fed up with my stomach issues and my doc sent me to a GI doc. My endoscopy and colonoscopy are scheduled in about 2 weeks. In the mean time I've done a ton of research. I haven't found anything yet that connects fainting (or near fainting..) with Celiac BUT after thinking about it I can see how it could be connected. Here's why. Think about what happens to a diabetic when they have too much sugar...they can actually go into a coma if it's bad enough. I know for me I get a euphoric feeling and then plummet to the depths of what feels like Hell when I eat too much sugar. Wouldn't it stand to reason that if you're body can't cope with gluten and you give it a mega dose that it could cause some kind of fainting like spell? That makes total sense to me. Of course, I'm no doc...but there has to be a connection.

I am so relieved to hear that someone has these same kinds of attacks. I thought I was the only one! Oh, they are horrible. An accidental slip of gluten one evening could cause me to wake up to an attack, feel so energy-deprived that I can barely get up off the couch, barely dress myself, and lead to two or more additional attacks throughout the day. I will not lose consciousness either, but get very light headed, and have for a couple of seconds blacked out before. I have had three attacks today because of a "Gluten free" burger I ate yesterday.. The bacon on it was not gluten free, however. Grrrr <_<


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#14 1desperateladysaved

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Posted 12 January 2014 - 01:45 PM

I had trouble with dizziness after going gluten free.  It started 4 days after I went gluten free and the room seemed to spin.  I now feel that cross contamination trouble began at that time for me.  It did get better, but it was a complicated puzzle for me. The scent of  Peppermint essential oil seemed to help the symptoms of my dizziness.  One would want to get at the root of it.

 

Other major symptoms I had included extreme fatigue, foggy brain, and bloating.  I had at least 30 years of bloating symptoms when I got mistaken for pregnant several times.  I am now 20 months gluten free and am having energy to do things with.  :)  Hang in there, and be at work searching for roots and answers.

 

D


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#15 hunter.joseph

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Posted 04 March 2014 - 09:44 AM

I went to the hospital last week after collapsing, the whole room was spinning, my legs weak and could barely move them, and had a panic attack out of fear of what was going on. The dr without examining me explained that it was sinus pressure and vertigo as I always feel pressure in my head between my eyes whenever I have these spells. There are times that my muscles involuntarily twitch and I can hardly see straight. I have the worst brain fog that I almost feel outside of my body. This has always given me anxiety attacks because it frightens me. I went to a neurologist a year ago just said they were migraines. I thought I was having seizures so I got an EEG and an MRI. Came back ok. I have been under a lot of stress going through a divorce with a 2 yr old and 1 yr old doing everything on my own for over a yr. The next day after going to the hospital I had instant oatmeal the same thing I had before I went to the hospital. I experienced the exact same thing. I tried it again the following morning and had the same exact symptoms. I have always known that what I feel correlates with what I ate but I never really payed attention or ever even thought it could be some type of allergy or sensitivity to gluten. After researching gluten intolerance I feel a lot of the neurological symptoms and not as bad as the intestinal problems. This seems to be getting worse for me and I am curious to see if anyone has these same reactions to gluten. I am getting tested in a week so hopefully I can get some answers because I don't know how much longer I can take this.

I have had the exact same thing.  For the past 2 years I have been having vertigo, headaches, and I had 2 seizures and was put on anticonvulsants.  I had an eeg and an MRI both came back normal.  About a month ago I was tested for gluten intolerance because of my stomach aches, and it came back positive for gluten sensitivity.  I have been on a gluten free diet for about a month now and I have been feeling so much better.  I wish good luck for you and hopefully your gluten test will shed some light on what these symptoms your having are.


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