Discussions By Condition: I cannot get a diagnosis.

I have Celiac Disease w/ Neurological Symptoms!

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: kbrooks2010
  • July 2, 2010
  • 01:53 AM

Really bummed here.
I was diagnosed with Celiac disease (intolerance to wheat) about a year ago. Ceasing eating wheat cleared up my abdominal bloating and distress. All was well until last Jan.
I had what I believe was a seizure, very tired the evening before, didnt sleep all that well. Woke up in the AM, had some pankcakes, then BAM! Slumped in a chair, shaking on one size with my limbs, nausea, a feeling of extreme foginess, etc. Tingling in the extremeties (peripheral neuropathy.) Went to the ER. Upon arrival at the ER, I had another episode--what I believe now was a simple, partial seizure. I never blacked out, I was always aware of what was going on for the most part. If I did close my eyes, it only happened for just a few (2-5) seconds. They took me in, ran blood tests---sugar, electrolyte levels, all ok, nothing abnormal or outside range. Ran a CT scan--looked ok they said. They gave me some narcotics and some dilantin and a referral for a neuro meeting. ER Doctor said that he did not think it was a seizure, but he didnt know.
Soooo, went back home. Felt fine for a few days, then I felt a bit "weird"--I sometimes feel this strange sensation. I have seen is called an "aura" on line with a feeling of weirdness, nausea, weird smells, etc. I went to sleep, but woke up later ok.
Over the course of the next 6 months I've had a few of these attacks--some stronger than the others. All have the weird feeling, only a few have had jerks, always they go quickly.
I saw a neuro for an EEG, the first one had a weird spike, so they ordered another one, results looked ok but the neuro gave an OK for a more advanced neuro to take a look near the big city where I live close to.
He examined the original CT scan and listened to my story, took notes, etc and then said well it doesnt sound like a normal seizure to me, but why dont you come in for a multi day--sleep deprived--brain wave/eeg scan session. Going to do that in a couple of weeks. SO fast forward a couple months from that last meeting with the neuro.
Well, just last week I have had several episodes, some with the quick seizure and the leg and or arm jerking. I feel like ***l afterwards, foggy, extremely tired, out of it.
Today I felt it come on like a ton of bricks! One side of my body felt numb, tingling all over, nausea, some slight shaking, trouble walking, felt really really foggy and out of it. I was taken to the ER where I promptly slumped into my chair. Again, blood tests ok, no CT this time. They wouldnt do an MRI.
I am at my wits end. I am a Celiac and am wondering if the disease has done permanent damage to my neuro system. Will this ever end?
Can I take anti seizure meds and have a somewhat normal life if this is the case?
Anywhere where I could turn?
Please help............thanks in advance!!

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9 Replies:

  • My daughter has had these same symptoms for several years, both before being diagnosed with celiac and after. She has had scans, MRIs, etc. all tono avail. The cardiologist believes that since she has very low blood pressure, she is prone to these syncopes. She has most of the symptoms you describe except for the nausea. Doc says to increase her salt intake and to take something salty (pretzels) before arising from bed in the morning. (That is when about 90% of the events take place) She also was instructed to squeeze 2 tennis balls before sitting up in bed to raise her blood pressure. This has worked for the most part, but there is one other factor.....hydration. Doc says it is extremely important to get enough hydration as well. If she is in one position for any extended time, she should change position to allow for blood flow. I hope this may be helpful. She is 38 yrs. old and has Down Syndrome.
    jsparrow 1 Replies Flag this Response
  • Is it possible you are ingesting gluten and not knowing it? A lot of prepared foods have hidden wheat ingredients. Heck, campbell's soup adds wheat flour to many of its soups. I'm not sure if celiac does cause permanent damage, my understanding of the disease is that symptoms should resolve after all gluten is removed. Hope this helps a little.
    ferretlady 7 Replies Flag this Response
  • Really bummed here.I was diagnosed with Celiac disease (intolerance to wheat) about a year ago. Ceasing eating wheat cleared up my abdominal bloating and distress. All was well until last Jan.I had what I believe was a seizure, very tired the evening before, didnt sleep all that well. Woke up in the AM, had some pankcakes, then BAM! Slumped in a chair, shaking on one size with my limbs, nausea, a feeling of extreme foginess, etc. Tingling in the extremeties (peripheral neuropathy.) Went to the ER. Upon arrival at the ER, I had another episode--what I believe now was a simple, partial seizure. I never blacked out, I was always aware of what was going on for the most part. If I did close my eyes, it only happened for just a few (2-5) seconds. They took me in, ran blood tests---sugar, electrolyte levels, all ok, nothing abnormal or outside range. Ran a CT scan--looked ok they said. They gave me some narcotics and some dilantin and a referral for a neuro meeting. ER Doctor said that he did not think it was a seizure, but he didnt know.Soooo, went back home. Felt fine for a few days, then I felt a bit "weird"--I sometimes feel this strange sensation. I have seen is called an "aura" on line with a feeling of weirdness, nausea, weird smells, etc. I went to sleep, but woke up later ok.Over the course of the next 6 months I've had a few of these attacks--some stronger than the others. All have the weird feeling, only a few have had jerks, always they go quickly.I saw a neuro for an EEG, the first one had a weird spike, so they ordered another one, results looked ok but the neuro gave an OK for a more advanced neuro to take a look near the big city where I live close to.He examined the original CT scan and listened to my story, took notes, etc and then said well it doesnt sound like a normal seizure to me, but why dont you come in for a multi day--sleep deprived--brain wave/eeg scan session. Going to do that in a couple of weeks. SO fast forward a couple months from that last meeting with the neuro.Well, just last week I have had several episodes, some with the quick seizure and the leg and or arm jerking. I feel like ***l afterwards, foggy, extremely tired, out of it.Today I felt it come on like a ton of bricks! One side of my body felt numb, tingling all over, nausea, some slight shaking, trouble walking, felt really really foggy and out of it. I was taken to the ER where I promptly slumped into my chair. Again, blood tests ok, no CT this time. They wouldnt do an MRI.I am at my wits end. I am a Celiac and am wondering if the disease has done permanent damage to my neuro system. Will this ever end?Can I take anti seizure meds and have a somewhat normal life if this is the case?Anywhere where I could turn? Please help............thanks in advance!! be aware that its easy to have something with gluten in it and not realise it. Even some tablets can have gluten in them. I think that those with intollerances are more likely then average to have other food intollerances too. So maybe start charting exactly what you are eating leading up to these events.
    taniaaust1 2267 Replies Flag this Response
  • I’ve been having ocular migraines since about 1970. In 1999 I had a bad episode of them, loosing partial sight in my left eye for a week. I was diagnosed as having drusen spots at the time and the Ophthalmologist recommended that I start on Centrum Silver even though I was 42 because it had some extra nutrients known to be helpful for this and this condition was linked to macular degeneration. After 6 months I quit having those occular migraines and never connected the dots until this very moment. I started having what I thought to be ocular migraines again in January of 2008. These were different however, hitting me like a Mack truck. Quite often when I get them I have to sit down or risk passing out. They occur in three different forms now. The mild ones are the squiggly line variety I remember having since 1970. They are the longest lasting, maybe 10 to 15 minutes to no more than half an hour. The second type is like a curtain forms over one of my eyes, never both at the same time. It’s like light can get through at the top 20% of the field but below that is a brown out. Not total darkness but not enough light to see; only brown filters through, with some barely visible images filtering through. These last for no more than a minute at maximum strength and then they fade out. The third type of visual symptom is probably the scariest of them all even though I can minimize the danger it can cause when driving by covering one eye. It is however accompanied by a state of confusion where my brain is not functioning properly. On top of the kaleidoscope effect it causes with my vision my brain feels like it is short circuiting. The sensation it causes reminds me of those old fashioned monitors in the 1980 when you bumped them pretty hard, they kind of flicked out for a few seconds, only these symptoms last for a few minutes or maybe time just slows down during these episodes I’ve never timed them before.I’ve been living with all three of these type episodes since January of 2008 and I’d been through a couple ophthalmologists who finally sent me to a neurologist who sent me through a battery of tests MRI’s Cat Scans and whole slew of blood work Last summer I think he’d given up and tried sending me back to the Ophthalmologist saying he didn’t think he could help me. I quit going to see him last fall and this spring was diagnosed with celiac disease when my liver enzymes started going up. This wasn’t even my regular doctor. I was just seeing him to get a refill for my asthma medications. The More I read about this celiac disease the more I am beginning to believe it’s all connected. My brother died 4 years ago and he was never diagnosed with this condition, but I’ve got a hold of his medical records and everything points to celiac disease and misdiagnosis by his practitioners. My great Uncle and my Grandpa both died of the same diagnoses that my brother had postmortem. They all died young, between 57 and 61. I don’t think I just have celiac, I believe I may have a particularly malignant form of it.
    Anonymous 42789 Replies Flag this Response
  • Hi,I am new to this board. I also am dealing with colon symptoms and neuro.Not sure what directiion to go in. I am also dropping weight not intentionally. Any Chicago folks have a doctor referral?Thanks
    Anonymous 42789 Replies Flag this Response
  • Hi,I am new to this board. I also am dealing with colon symptoms and neuro.Not sure what directiion to go in. I am also dropping weight not intentionally. Any Chicago folks have a doctor referral?ThanksI went through the same thing. 3.5 years of neurological symptoms. Doctors tested me for MS, lupus, epilepsy, you name it. I had MRIs, spinal tap, EMGs, etc. I finally diagnosed myself with gluten intolerance, and found a chiropractor that also worked in nutrition. The cause of all of my problems was caused by the gluten, but it created a candida imbalance in my body. Candida is a yeast that we have in our intestines. When in balance, it is a necessary bacteria for digestion. But when out of balance, it gets in your bloodstream and attacks your blood cells, and eventually shuts down major glands and affects other systems in your body. You need to get the candida back in balance. This is a good website for information, but I would also suggest you try to find a chirpopractor/natural doctor in your area.I also had simple partial seizures, and they went away when I got my candida back in balance. I definitely recommend this to anyone, with any kind of symptoms. Modern medicine only treats the symptoms, they don't fix the problems. Check out the symptoms of candida on that website. You'd be amazed at how many wrong diagnoses are made.
    Anonymous 42789 Replies
    • August 24, 2010
    • 02:04 PM
    • 0
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  • I tested negative for celiac disease.I have had IBS-D for 20 yrs now.Everything I eat comes out the same way it went in.Can ppl please give me help here?
    Anonymous 42789 Replies Flag this Response
  • I have had neurological symptome since childhood. I never thought anything abnormal about it until my children started having the same symptoms, only more exaggerated (looks like seizures). My oldest son has aspergers syndrome(autism) and my two daughter also have chronic skin problems amongst other supposedly benign chronic conditions and iron deficientcy. I have been on a quest to find answers to what has been going on with our health for nearly 20 years. Doctors, with all their wisdom couldn't help. I gave up on doctors and started my own research. I haven't been diagnosed but do believe this is my problem, as well as my kids problems. My uncle who has been diagnosed with celiac, has grandkids who had simular neurological symptoms as my kids. Some look like seizures and others resemble temper tantrums with uncontrolled bouts of whole body stiffening with grunting.
    Anonymous 42789 Replies
    • August 20, 2011
    • 06:34 PM
    • 0
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  • oh gosh! i wish this werent a year later that i see this!!!!! the same exact thing happened to me.....except i was having seizures then was diagnosed with celiac but neurologist doesnt seem to think there is a connection...frustrated!!!
    Anonymous 42789 Replies
    • August 30, 2011
    • 03:02 PM
    • 0
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