Autoimmune Disease. Seizures W/ Celiac

[Ms. Skinny Chic]

I have been sick with issues other than celiac. During my research, I noticed people with celiac have a variety symptoms and autoimmune diseases. Lately, my health has taken a bad turn. The bad turn landed me in the hospital last week.

Before going on the gluten free diet a lot of strange occurrences happened in my life. I started having seizure like episodes, after eating or eating wheat products. I would have 10 or 20 seizure like episodes in a one hour period. The final episode happened to me, after ingesting donuts..)

(yeah, I love donuts) Since, going on the gluten free diet my seizure like episodes have dropped drastically.

I watched mystery diagnosis on TLC and this little kid with celiac had seizures too.. I am not such a weird celiac there.. What is weird is all my other symptoms.

My most dangerous symptom is: - syncope=passing out

I tend to pass out more than normal.. I have hit the floor and walls a few times to often for my own comfort.

The other problem is this unknown illness: It started with me having a hard time to swallow food or drinks, burning sensations in the hands and arms, shooting sensations up my nerves all over my body, then developed into episodes of body movement(shaking, trembling),my arms would fling themselves or tremor, my facial muscles twitch uncontrollably,my coordination and balance was off, my lip really tremors by itself a lot at times, difficulty walking( relatives say it appears like I am walking on shells or shuffling),difficulty speaking, bouts of falling or passing out, my handwriting was affected as well, my hands hurt period to move them sometimes, digestive symptoms(intestinal pain), fatigue, difficulty sleeping, headaches.

Does anyone else have similar issues here????

[Mother of Jibril]

My sister developed a seizure disorder when she was in seventh grade. She started zoning out in class... and then at the dinner table. Very strange. Her eyes would be open and she would keep chewing, but if you said something to her she wouldn't respond. My parents took her to a neurologist and they gave her an MRI, but it didn't show anything. Since I have one gene for celiac and one for gluten sensitivity, I suspect she has a least one of those genes too... that could be the cause of her problem. For a while her seizures were really bad, but (as far as we know) she hasn't had one for several years now.

Have you had an MRI? I would definitely go see a neurologist.

I wonder if you also have some other autoimmune disorders or vitamin deficiencies going on. Disorders like lupus, Sjogren's, myasthenia gravis, Hashimoto's, etc... can do all kinds of weird things to your body. An ANA test could give you a general sense of whether autoimmune disorders are a problem for you. Also... I assume the hospital would have run a CBC and maybe a metabolic panel. Have you seen the results?

[Ms. Skinny Chic]

My sister developed a seizure disorder when she was in seventh grade. She started zoning out in class... and then at the dinner table. Very strange. Her eyes would be open and she would keep chewing, but if you said something to her she wouldn't respond. My parents took her to a neurologist and they gave her an MRI, but it didn't show anything. Since I have one gene for celiac and one for gluten sensitivity, I suspect she has a least one of those genes too... that could be the cause of her problem. For a while her seizures were really bad, but (as far as we know) she hasn't had one for several years now.

Have you had an MRI? I would definitely go see a neurologist.

I wonder if you also have some other autoimmune disorders or vitamin deficiencies going on. Disorders like lupus, Sjogren's, myasthenia gravis, Hashimoto's, etc... can do all kinds of weird things to your body. An ANA test could give you a general sense of whether autoimmune disorders are a problem for you. Also... I assume the hospital would have run a CBC and maybe a metabolic panel. Have you seen the results?

Your sister may have celiac disease too.. I have non epileptic seizures... Mine are brought on by eating gluten foods.

Every seizure, I had almost came after eating wheat products.. I would also have these focal type seizures.. I would totally blank out and start shaking like crazy later..

I was diagnosed with wheat issues as a child, but my family thought I would outgrow it.. That seems totally insane to me now.. I couldn't even use soaps with wheat as a child.. It was extreme then... Parents don't always understand the severity of certain health issues...Guess what.. I didn't outgrow it and my issues with wheat almost killed me.

A little info on celiac and seizures...

The link between gluten and epilepsy has long been known, but that does not make it widely known.

This is unfortunate because there must be quite a few people out there taking medication to control their seizures, when eliminating gluten may solve the problem.

This does not mean that all seizures are caused by gluten. Still, it is something to watch out for.

If you have celiac disease, you will need to eliminate all gluten in any case, as the health effects of even small amounts of gluten can be serious (cancer for example).

Another symptom of celiac that is relevant here is cerebral calcifications, which can eventually lead to seizures.

The point is that people who experience epilepsy or other types of seizures should eliminate gluten from their diet and see if this improves their condition in any way.

However, when celiac disease is involved, seizure symptoms may not be reversed by eliminating gluten if these symptoms are allowed to continue without treatment for too long. Treatment in this case means eliminating all gluten from the patients diet.

check out this link: The kid had celiac disease and seizures....

Open Original Shared Link

I have been tested for lupus and many other things. The doctors haven't tested for unusual autoimmune diseases.

Yes, I do have vitamin deficiencies too. I have pernicious anemia, potassium and iron deficiencies. I may have more..

Since, my intestines weren't absorbing any nutrients..

In the past, I had hyperthyroid issues as well...

There must be a definitive test for autoimmune diseases.

My health records a humongous.. I haven't seen the records from the hospital.. The doctor knows, I am sick.. No one knows what to test me for..

[ShayFL]

B12 and Iron deficiencies CAN cause ALL of those nagging symptoms you are having? What are you doing to replenish those nutrients?

[Ms. Skinny Chic]

B12 and Iron deficiencies CAN cause ALL of those nagging symptoms you are having? What are you doing to replenish those nutrients?

I am taking long Intramuscular injections(that is a life long thing for me) of B-12 monthly and Iron tablets. I was thinking of possibly taking some kind of liquid iron supplement. My intestines barely absorb anything..

Pernicious anemia can cause tingling in the hands and feet and neurological issues.

I think there is definitely something else going on too. In my last MRI scan, they found lesions on the brain.

Which could be MS or a 100 other autoimmune diseases..

You are a pretty smart cookie.. Shay

[ShayFL]

Try Floravital (its gluten free), liquid and easy to absorb. If it were me, I would take daily sublingual B12 as well (you cant overdose). And many who get injections say they really notice a difference when they do the sublingual on top of the shots. Jarrow is a good brand.

Potatoes gave me seizures if I ate them at dinner. I would wake with seizures. An odd smell in my nose and complete disorientation for I dont know how long and kinda felt like my whole being was "buzzing". I hated it. Ditched the potatoes when I finally figured it out and have not seized since.

It could be another food intolerance as well. Do you keep a diary?

[Ms. Skinny Chic]

Try Floravital (its gluten free), liquid and easy to absorb. If it were me, I would take daily sublingual B12 as well (you cant overdose). And many who get injections say they really notice a difference when they do the sublingual on top of the shots. Jarrow is a good brand.

Potatoes gave me seizures if I ate them at dinner. I would wake with seizures. An odd smell in my nose and complete disorientation for I dont know how long and kinda felt like my whole being was "buzzing". I hated it. Ditched the potatoes when I finally figured it out and have not seized since.

It could be another food intolerance as well. Do you keep a diary?

I have a food journal. I record all my meals and my reactions to them. And, between the Injections myself and others do take the sublingual B-12. I will check out the supplements and vitamins you recommended online.

I never thought about potatoes causing seizures... wow, that is out of this world..

[Fiddle-Faddle]

Please look into Lyme Disease. There is a thread on this board devoted to Lyme Disease, as so many celiacs here have been diagnosed with it.

The father of one of my students had it for years, and the neurologist couldn't find anything wrong (and like you, he was having seizures). Finally, the neuro said, "well, we've run every other test there is, let's try Lyme Disease."

And it was positive.

My student's father, like over half of all Lyme Disease sufferers, never had the "bull's-eye" rash, and didn't even recall ever having been bitten by a tick.

Please look into it.

[ravenwoodglass]

I think there is definitely something else going on too. In my last MRI scan, they found lesions on the brain.

Which could be MS or a 100 other autoimmune diseases..

What has your neurologist said about your new symptoms? Do you remember what they called those lesions? Celiac disease that impacts neurologically causes lesions similar to the demylinating lesions found with MS. The lesions are referred to as UBOs or unidentified bright objects. They look like a white spot on the MRI. Many of the issues you describe can be caused by the nerve damage that results from the brains gluten impact. In many cases these will resolve, at least to some extent once someone has been gluten-free for long enough. In my case it was about 6 months before I could walk unaided but another 2 years before I regained reflexes.

I also had seizures from gluten and as you say they really don't recognize it often. I was put on a very strong seizure med at almost toxic levels even though my other physical symptoms screamed celiac. It wasn't even tested for until almost 10 years later.

I agree you should add a sublingual B12, that will be helpful and it is not a vitamin you can take to much of.

Have you checked all meds and nonfood sources for gluten? I am wondering if this escalation of symptoms might have something to do with hidden gluten. I know I have to be extremely careful and avoid gluten grains even in distilled products. Do keep in close touch with your neuro and do reevaluate everything you come into contact with. I hope you get some resolution soon.

[Ms. Skinny Chic]

What has your neurologist said about your new symptoms? Do you remember what they called those lesions? Celiac disease that impacts neurologically causes lesions similar to the demylinating lesions found with MS. The lesions are referred to as UBOs or unidentified bright objects. They look like a white spot on the MRI. Many of the issues you describe can be caused by the nerve damage that results from the brains gluten impact. In many cases these will resolve, at least to some extent once someone has been gluten-free for long enough. In my case it was about 6 months before I could walk unaided but another 2 years before I regained reflexes.

I also had seizures from gluten and as you say they really don't recognize it often. I was put on a very strong seizure med at almost toxic levels even though my other physical symptoms screamed celiac. It wasn't even tested for until almost 10 years later.

I agree you should add a sublingual B12, that will be helpful and it is not a vitamin you can take to much of.

Have you checked all meds and nonfood sources for gluten? I am wondering if this escalation of symptoms might have something to do with hidden gluten. I know I have to be extremely careful and avoid gluten grains even in distilled products. Do keep in close touch with your neuro and do reevaluate everything you come into contact with. I hope you get some resolution soon.

Hi,

Yesterday, I wrote tons of neurologist and someone from the National Ataxia Foundation answered me back today..

She said my symptoms were consistent with "Ataxia"

I do have a mild curved spine too.. ( I didn't mention that to her)I am kind of scared now...

Celiac disease causes some serious neurological disorders.( don't cheat on your gluten diet) This kind woman sent me some information on wheat allergy, Celiac Disease and Ataxia.

Also, the National Institute of Health wrote me back and they are interesting in recruiting patients with undiagnosed and rare illnesses. They are interested in helping me now too. I got a lot done in two days.

My mom never knew how serious wheat allergies/ celiac disease can be and never did I.. It seems almost too late now. If, someone else reads this and it can save them precious time.. I hope you read it..

This is the article on wheat allergy and ataxia

Open Original Shared Link

another article on gluten sensitivity and ataxia ( you may have to join this site to see the article- the woman sent me the PDF)

Open Original Shared Link

These are the symptoms of ataxia

# clumsiness

# progressive weakness of the legs which may appear as a staggering, lurching way of walking (gait)

# reduced muscle coordination

# trembling when standing still

# partial loss of the sense of touch or sensitivity to pain and temperature

# arms and legs may become weak or numb

# paralysis of the lower limb

# impaired speech

# impaired swallowing

# spine may begin to curve to one side (scoliosis)

# feet may become rigid and deformed

# vision problems

# hearing problems

# diabetes develops

# heart muscles may be impaired (cardiomyopathy)

There are different kinds of ataxia, but none of them are good.

[Ms. Skinny Chic]

Hi,

Yesterday, I wrote tons of neurologist and someone from the National Ataxia Foundation answered me back today..

She said my symptoms were consistent with "Ataxia"

I do have a mild curved spine too.. ( I didn't mention that to her)I am kind of scared now...

Celiac disease causes some serious neurological disorders.( don't cheat on your gluten diet) This kind woman sent me some information on wheat allergy, Celiac Disease and Ataxia.

Also, the National Institute of Health wrote me back and they are interesting in recruiting patients with undiagnosed and rare illnesses. They are interested in helping me now too. I got a lot done in two days.

My mom never knew how serious wheat allergies/ celiac disease can be and never did I.. It seems almost too late now. If, someone else reads this and it can save them precious time.. I hope you read it..

This is the article on wheat allergy and ataxia

Open Original Shared Link

another article on gluten sensitivity and ataxia ( you may have to join this site to see the article- the woman sent me the PDF)

Open Original Shared Link

These are the symptoms of ataxia

# clumsiness

# progressive weakness of the legs which may appear as a staggering, lurching way of walking (gait)

# reduced muscle coordination

# trembling when standing still

# partial loss of the sense of touch or sensitivity to pain and temperature

# arms and legs may become weak or numb

# paralysis of the lower limb

# impaired speech

# impaired swallowing

# spine may begin to curve to one side (scoliosis)

# feet may become rigid and deformed

# vision problems

# hearing problems

# diabetes develops

# heart muscles may be impaired (cardiomyopathy)

There are different kinds of ataxia, but none of them are good.

There was a study of celiac disease and ataxia

THE NEUROLOGY OF COELIAC

DISEASE

In 1966 Cooke published a landmark

paper on 16 patients with neurological

disorders associated with adult celiac disease.8 This

was the first systematic review of the

subject after the introduction of diagnostic

criteria for celiac disease. Ten of these patients

had a severe progressive neuropathy. All

patients had gait ataxia and some had

limb ataxia. Neuropathological data

from postmortem examinations showed

extensive perivascular inflammatory

changes affecting both the central and

peripheral nervous systems. A striking

feature was the loss of Purkinje cells

with atrophy and gliosis of the cerebellum.

All 16 patients had evidence of

severe malabsorption as evidenced by

anaemia and vitamin deficiencies as well

as profound weight loss.

Several case reports followed, primarily

based on patients with established

celiac disease, often with persisting troublesome

gastrointestinal symptoms followed by

neurological dysfunction. Data from patients

with celiac disease presenting with gastrointestinal

symptoms followed up in a

gastrointestinal clinic suggest that

otherwise unexplained neurological dysfunction

is a complication in 6% to 10%

of cases.9

Table 1

Neurology of coeliac

disease (based on a review of 35

papers of single or multiple case

reports from 1964 to 2000)

Total number of patients 83

Male to female ratio 44:39

Mean age 48

Neurological diagnosis

Ataxia 29

Peripheral neuropathy 29

Myopathy 13

Ataxia with myoclonus 9

Myelopathy 4

Dementia (usually with

additional features)

6

A review of all such reports (with

biopsy proved celiac disease) from 1964 to date

shows that ataxia and peripheral neuropathy

are the commonest neurological

manifestations seen in patients with

established celiac disease (table 1). Less common

manifestations include inflammatory

myopathies10 and myoclonic ataxia.11 Isolated

dementia is uncommon and most

cases tend to have additional neurological

features (for example, ataxia or neuropathy).

Patients with epilepsy associated

with occipital calcifications on CT

and celiac disease have been described,12 mainly in

Italy.

[ravenwoodglass]

My mom never knew how serious wheat allergies/ celiac disease can be and never did I.. It seems almost too late now.

It's not to late, don't lose hope. I had by the time I was diagnosed. Noone in my family ever expected me to get any better, least of all me. It will take a very long time to heal and you may not notice the changes at first but you should heal. We don't always get full resolution of the ataxia, I still have some balance issues, but we can heal to the point where it is not something that rules our lives. Try to eat as pure of a diet as you can and be a bear about sniffing out CC issues and avoiding gluten ingredients in all your toiletries and other nonfood items. That will help speed the healing. Also if your doctor can give you a script to visit a physical therapist they can help a lot also. Mine was able to help free up movement in my ankles and showed me some excercises to help my balance. One of the machines he had was like a small electronic surfboard. The first time I got on it I had to hold on for dear life but at my last session I was able to stand on it for 5 minutes without holding anything.

Whatever you do don't lose hope. Today is my 6 year anniversary of being diagnosed. 6 months before that we remodeled the house in preperation for me being in a wheelchair. Today I will put on music and dance around my house in celebration.

[ShayFL]

Congratulations Raven!!!!!

[Ms. Skinny Chic]

What has your neurologist said about your new symptoms? Do you remember what they called those lesions? Celiac disease that impacts neurologically causes lesions similar to the demylinating lesions found with MS. The lesions are referred to as UBOs or unidentified bright objects. They look like a white spot on the MRI. Many of the issues you describe can be caused by the nerve damage that results from the brains gluten impact. In many cases these will resolve, at least to some extent once someone has been gluten-free for long enough. In my case it was about 6 months before I could walk unaided but another 2 years before I regained reflexes.

I also had seizures from gluten and as you say they really don't recognize it often. I was put on a very strong seizure med at almost toxic levels even though my other physical symptoms screamed celiac. It wasn't even tested for until almost 10 years later.

I agree you should add a sublingual B12, that will be helpful and it is not a vitamin you can take to much of.

Have you checked all meds and nonfood sources for gluten? I am wondering if this escalation of symptoms might have something to do with hidden gluten. I know I have to be extremely careful and avoid gluten grains even in distilled products. Do keep in close touch with your neuro and do reevaluate everything you come into contact with. I hope you get some resolution soon.

Did you have relapses with the ataxia disorder??? I feel fine sometimes and then it my movement issues come back vengefully. I have bothersome headaches in the lower area of the back of my head. Do you have those???

I read something that said ataxia can be caused by B-12 deficiency too.

Did they give you any meds for your ataxia????

The patient specialist from the National Ataxia Foundation told me that people with Friedrich's ataxia have scoliosis.

I just had wrote her that I didn't think my issue was related to the major ataxia's..lol

It seems that Friedrich's is fatal... I am still hoping it is something else.. She said, I need to go to a doctor either way and get diagnosed. She seems pretty sure..I have some form of ataxia.. just like you..

How were you diagnosed with ataxia??????

What were you symptoms and how did they conclude you have ataxia??

[ravenwoodglass]

Did you have relapses with the ataxia disorder??? I feel fine sometimes and then it my movement issues come back vengefully. I have bothersome headaches in the lower area of the back of my head. Do you have those???

I read something that said ataxia can be caused by B-12 deficiency too.

Did they give you any meds for your ataxia????

The patient specialist from the National Ataxia Foundation told me that people with Friedrich's ataxia have scoliosis.

I just had wrote her that I didn't think my issue was related to the major ataxia's..lol

It seems that Friedrich's is fatal... I am still hoping it is something else.. She said, I need to go to a doctor either way and get diagnosed. She seems pretty sure..I have some form of ataxia.. just like you..

How were you diagnosed with ataxia??????

What were you symptoms and how did they conclude you have ataxia??

The UBO's were diagnostic of my ataxia along with my symptoms, like the loss of my reflexes, partial paralysis of my legs, nerve conduction tests where they insert needles in the muscles and then use electricity to measure nerve response showed that my right leg was basically dead. Most important was the resolution of most issues once I had been on the diet for a bit. There are no meds for gluten ataxia but the diet does provide a lot of relief. Things were two steps forward one step back it seemed for a long time but I have been holding steady (no pun intended) now for about 5 years. My most noticeable improvement happened during the first year and then improvement was slow but steady from then on. One thing that is very noticeable for me is the reaction from even the smallest amount of gluten. Within a short time of injestion I will have what I call a shift, I feel like I am falling but I am not moving. I'll then be off balance for a few weeks before it stops.

You should go ahead and get some sublingual B12, it will help a great deal not because it is a 'cure' for ataxia but because it will help with the nerve repair and function. The nerve repair will come from the diet observed very strictly. Do let your doctors know you are supplementing because it will effect blood testing if they are looking for B12 deficiency.

[caek-is-a-lie]

I get seizures from gluten, too. For years they told me it was just psychogenic and sent me to psychological testing and therapy. All they found was that I had PTSD from seeing doctors! lol I've had epilepsy tests and MRI's and all sorts of tests, all negative. Then I go gluten free for about a month and accidentally eat gluten last week and I have seizures again. Woke me up out of a sound sleep. I never made the connection before because it takes 12 hours to have the seizures after eating gluten and by then I had no idea what the cause could be. It's such a relief to know that this is actually preventable!

I'm wondering if anyone knows if there is a vitamin B supplement that doesn't contain choline? It seems like all the B supplements get the B from choline, but it aggravates my seizures and cataplexy (paralysis) and I can't take it.

[ShayFL]

You can buy them each individually.

[ravenwoodglass]

I get seizures from gluten, too. For years they told me it was just psychogenic and sent me to psychological testing and therapy. All they found was that I had PTSD from seeing doctors! lol I've had epilepsy tests and MRI's and all sorts of tests, all negative. Then I go gluten free for about a month and accidentally eat gluten last week and I have seizures again. Woke me up out of a sound sleep. I never made the connection before because it takes 12 hours to have the seizures after eating gluten and by then I had no idea what the cause could be. It's such a relief to know that this is actually preventable!

I'm wondering if anyone knows if there is a vitamin B supplement that doesn't contain choline? It seems like all the B supplements get the B from choline, but it aggravates my seizures and cataplexy (paralysis) and I can't take it.

You want a sublingual B12, your going to get that as a seperate tablet. I use Country Life 3000mcg but there are others that are also choline free.

[Kenster61]

I have also been diagnosed with having non epileptic seizures. I am glad there are others that have the same condition and that it is connected with celiac disease. I would be interested to know if there are others out there who have been diagnosed with PNES (psychogenic non epileptic seizures) and would be willing to share their expereince.

ken

[ellora]

hi i need to chat to someone as doctors in the uk dont listen and havent got a clue. iv got coeliac and DH, my mums also has coeliac and just been diagnosed with MS. I never realised the neurological effects coeliac could have and i have been having problems with my thought patters and things and i was wondering if anyone knows anything. I know theres links with depression but my doctor says not. even though my mum sufffers from depression also. i was an A student at school and as i got older i started to struggle with concentration and its got worse i feel like my mind is slipping away from me. i forget things (i reask questions over again minuits after iv been given the answer and walk out of the house with my cups in hand ect.)and have always been so clumsy that all my teachers and family ect. usd to comment on it. my first word was celetape <(eg. iv just spent half an hour trying to remember how to spell it and cant). im wondering if i have a coordination problem as people also comment on the way i walk. some even say i have a slight limp or dragging of the leg. iv gotton so bad somedays i cant talk and i stop in the middle of things and dont know what im doing. iv heard of legions on the brain with coeliac but i dont know if its related. i have insomnia and really bad dreams when i do sleep. iv always been good at hard work but i was in my last job for seven weeks before i broke down as it was too much. just a shop job but on my last day before i decided to leave i made so many mistakes and i was shaking and felt like my head was exsploding. i dont feel my olds self. i know theres something wrong. i think to everyone else this sounds stupid but to me its scary and i think a doctor will think im mad. thing is though i started a degree four years ago getting top marks and took a years out when i went down hill thinking id get better with rest and didnt and in the end i ended up barely passing. im sorry for the essay i just need help.

[Kenster61]

Ellora,

We all know to some extent what you must be experiencing. I can just say hang in there and keep looking for answers. I believe I'm going to take my questions to the Celiac Desease research clinic in Baltimore. Maybe there is a place in your country that specializes in finding the connections your looking for through their research.

Ken

[rinne]

Welcome.

It's not to late, don't lose hope. I had by the time I was diagnosed. Noone in my family ever expected me to get any better, least of all me. It will take a very long time to heal and you may not notice the changes at first but you should heal. We don't always get full resolution of the ataxia, I still have some balance issues, but we can heal to the point where it is not something that rules our lives. Try to eat as pure of a diet as you can and be a bear about sniffing out CC issues and avoiding gluten ingredients in all your toiletries and other nonfood items. That will help speed the healing. Also if your doctor can give you a script to visit a physical therapist they can help a lot also. Mine was able to help free up movement in my ankles and showed me some excercises to help my balance. One of the machines he had was like a small electronic surfboard. The first time I got on it I had to hold on for dear life but at my last session I was able to stand on it for 5 minutes without holding anything.

Whatever you do don't lose hope. Today is my 6 year anniversary of being diagnosed. 6 months before that we remodeled the house in preperation for me being in a wheelchair. Today I will put on music and dance around my house in celebration.

What a wonderful post, made me cry. I am so happy for you.