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Gluten Neuropathy


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#1 TwitchyMcLurcherson

 
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Posted 18 October 2010 - 08:44 AM

I've been really struggling since mid June with sudden onset gluten neuropathy. It's getting worse. I think I've had symptoms of gluten intolerance for at least ten years, but it was all gastrointestinal before and misdiagnosed until August of this year.

One afternoon, I fell asleep exhausted on the couch. When I woke up, I was drooling prolifically and could barely get my body to respond to walking or anything... I felt like I'd been drugged. My vision was blurred (ocular ataxia). I soon began vomiting, then my feet turned in and locked (dystonia), then my hands. This came and went. Within a few hours, my torso was jerking (myoclonus), head turning, muscles convulsing, and hands (especially right) tremoring. Slurred speech, stuttering. Unable to walk (ataxia). Needless to say, we went to the ER (of a world renowned hospital). They sent me home, confused with my condition. The next morning, I woke up with an insane migraine and was rushed via ambulance back to the same ER- I don't remember that ride at all. Long story short, MRI revealed very little, other than a couple of white lesions on cerebellum (which they weren't concerned about). The rest of the tests came out negative. No seizures apparent on EKG. They sent me home, again. Neurologists had a no clue- not any of the 15 OR SO that came by to examine me.

The neurologists at Harvard told me, after a five minute cursory exam, that it was "psychological" and that I should see a psychiatrist.

Over the next two weeks, I did my research, went on a trial diet (where I discovered the neuro symptoms returned within 30 minutes of accidentally ingesting gluten), returned to the same doctors, and asked for a blood test for gluten intolerance. They didn't believe me, but ordered the test anyway.

It came back POSITIVE. It's been two months since my diagnosis and I try everything I can to stay gluten free.

So long as I avoid gluten in ANY increment, I don't get the neuro symptoms. But within 30 minutes of getting "glutened", they return in full force, starting with a steady progression (first face flushes, my vision blurs, right hand starts tremoring, 10 minutes later my head starts whipping left, and five minutes after that my muscles seize and feet turn in, locking). I have Diazepam for when this happens, and it's worked so far, so long as I catch it when my hand starts tremoring...

... until last night. Last night it failed to work at all. I was left in public when it happened and fell down outside of a cafe. No one would look at me or help me (I live in a major city- nearly 150 people must have seen me). The medicine didn't work.

It's been 18 hours since and I can't stop tremoring (except when I sleep). I'm ONLY 25 YEARS OLD.
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#2 ravenwoodglass

 
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Posted 18 October 2010 - 10:56 AM

You poor thing. I can't believe no one would help you. You need to call the doctor back and tell them the drug is not working. That must have been a really scarey experience for you. If you are in public and you feel the event coming try to get to somewhere where someone can call an ambulance or phone someone to get you. I am so sorry you din't have even a single person try to help. You are in a great place to learn what you need to do to keep yourself safe. There is a lot to learn about being gluten free and you are likely to be very sensitive. Please read as much as you can here and do ask any questions you need to.
I have neuro issues with gluten also but not as severe as your have been. I did have seizures on gluten but they were mild compared to what you are going through. I also had vision issues and for a long time had 2 pairs of glasses, one to wear when glutened and one for days when I wasn't. I also have the ataxia and those little white spots on the MRI are called 'UBOs" or unidentified bright objects. Unfortunately here those are considered a mystery and doctors don't think they mean anything. In other countries they are diagnostic of celiac antibodies attacking the brain. I would have been diagnosed literally years before I was if my neuro had known what those 5 bright white spots were.
I am glad that you know what caused the problem. Know your not alone in having the neuro issues and that you can heal.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 TwitchyMcLurcherson

 
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Posted 18 October 2010 - 11:42 AM

The post cut me off before I'd finished. :)

What prognosis is there for neurological gluten reactions? I can't find much. My doctors know little to nothing (so much for Ivy League medical research). I have two children younger than 3. I'm a student. I don't want to end up in a wheelchair or worse. But if that's the reality, I'll accept that. I'd just like to know. Anyone else present neurologically? Please, please tell me your stories, coping mechanisms, and anything else. I don't know anyone else with this at all (supposedly my reaction is extremely rare).
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#4 TwitchyMcLurcherson

 
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Posted 18 October 2010 - 11:45 AM

You poor thing. I can't believe no one would help you. You need to call the doctor back and tell them the drug is not working. That must have been a really scarey experience for you. If you are in public and you feel the event coming try to get to somewhere where someone can call an ambulance or phone someone to get you. I am so sorry you din't have even a single person try to help. You are in a great place to learn what you need to do to keep yourself safe. There is a lot to learn about being gluten free and you are likely to be very sensitive. Please read as much as you can here and do ask any questions you need to.
I have neuro issues with gluten also but not as severe as your have been. I did have seizures on gluten but they were mild compared to what you are going through. I also had vision issues and for a long time had 2 pairs of glasses, one to wear when glutened and one for days when I wasn't. I also have the ataxia and those little white spots on the MRI are called 'UBOs" or unidentified bright objects. Unfortunately here those are considered a mystery and doctors don't think they mean anything. In other countries they are diagnostic of celiac antibodies attacking the brain. I would have been diagnosed literally years before I was if my neuro had known what those 5 bright white spots were.
I am glad that you know what caused the problem. Know your not alone in having the neuro issues and that you can heal.


Have your seizures, atazia, and vision problems gone away, or do they continue sporadically (as indicative of irreversible damage to your cerebellum)? I'm getting worse.
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#5 dilettantesteph

 
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Posted 18 October 2010 - 11:56 AM

I feel for you. I wanted to give you some encouragement. I have only minor neural issues. The longer I remain gluten free, the less severe and more rare are my glutenings. The neural issues took the longest to heal, it seemed, but they don't come back as fast either. Hopefully over time your glutenings will become less debilitating.
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#6 ravenwoodglass

 
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Posted 18 October 2010 - 12:09 PM

Have your seizures, atazia, and vision problems gone away, or do they continue sporadically (as indicative of irreversible damage to your cerebellum)? I'm getting worse.


Yes mine for the most part went away. I did however have to be really strict. I live in a gluten free house and I eat mostly whole unprocessed foods. I eliminated it from everything I came in contact with. I have to be very careful to not get CC'd because the symptoms come back if I do. I also found I am sensitive to distilled gluten grains so I avoid them in pickles, vinegar and alcohol.
Be sure you have checked with the maker to be sure all meds and supplements are gluten free. Be sure to read the whole label with supplements as some will have barley and wheat grass in them and still be labeled gluten free. You don't want any with either grass in it.
Do follow up with your neurologist about the med your on. Hopefully being really strict with the diet will resolve some of the issues. Over time my neuro effects, while still there when glutened, have improved a great deal and their effects when I am glutened are milder. Hopefully the same will hold true for you.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 TwitchyMcLurcherson

 
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Posted 18 October 2010 - 12:56 PM

For an example of what this looks like in ONE area of my body, here's a video of me today trying to draw with my right hand (I'm right handed). You should see me try to walk.

My link
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#8 Swimmr

 
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Posted 19 October 2010 - 01:37 AM

I too do have some neuro symptoms with celiac.

It's just a mild to moderate vertigo-like attack though lasting a few days into a week sometimes. It's what I would describe as tolerable as compared to you. I will keep you in my thoughts and prayers as it's got to be very frustrating to go through something like that being so young. I'm 28 and my co-workers are convinced I'm falling apart.

It's a good thing you have caught what the culprit is though and this gluten-free thing DOES get easier :)
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-Self-diagnosed gluten/wheat intolerance 2007. Negative (basic) blood test for celiac disease March 2009.
-Diagnosed positive for Celiac 5/11/2010!!
-Vitamin D low (last year was deficient), Iodine low, Protein S low. Balance/dizziness not related to Celiac.
-Elimination diet 11-4-2009 and ended 02-28-2010. Tolerating dairy again. Highly intolerant to soy, sensitive to green peas and corn kernels.
"Oh CRAP! Are you SERIOUS??

#9 rhiannon34

 
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Posted 24 October 2010 - 08:21 PM

I worked with a lady who had very similar symptoms to these. We worked together as dance instructors. One day at work in the break area I found her passed out cold in the floor. She came to pretty fast, disoriented for a bit. It scared us all and she never told us what was wrong. Then another day, she ate a salad from chick fil a which was not her usual routine, and she started loosing her motor skills, including speach. I immediately got her in the bathroom, where she was again disoriented, slurred speach, jerky movements, etc. And passed out again. She soon after quit her job because of the health problems, but told us that she had had a stroke before, and had brain lesions, but didn't still know why. Months after she quit, I called her up, and she told me she had been diagnosed with Celiac disease. I hope this helps some, even though I can't tell you much more about it.
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Not diagnosed yet, seeing Dr. Verm next month!

Elizabeth

#10 Emilushka

 
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Posted 25 October 2010 - 03:39 AM

Have you been worked up for any kind of concurrent seizure disorder? Had an EEG done, etc? It's possible that instead of needing diazepam only when you get symptoms, you should be on it full-time to prevent attacks.
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#11 Alice66

 
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Posted 26 October 2010 - 06:37 AM

The post cut me off before I'd finished. :)

What prognosis is there for neurological gluten reactions? I can't find much. My doctors know little to nothing (so much for Ivy League medical research). I have two children younger than 3. I'm a student. I don't want to end up in a wheelchair or worse. But if that's the reality, I'll accept that. I'd just like to know. Anyone else present neurologically? Please, please tell me your stories, coping mechanisms, and anything else. I don't know anyone else with this at all (supposedly my reaction is extremely rare).

Hi Twitchy.

I can understand how you feel as I have numerous neorological symptoms.

I was diagnosed with Chronic fatigue 20 years ago and only 18months ago did I realize that I was gluten intolerant. I didn't have a diagnosis but as soon as I went on the diet, all my stomach problems subsided. Unfortunately my neorological ones didn't and I suffer with bad muscle weakness which lead to tremours, twitching and shaking.

Over the past 10 years I have taken different supplements and one which I take regularly is Pantothenic acid (B5). 6 months ago I started to get excrutiating pains in the head which left me unable to speak, I thought I had a tumour as I also went deaf in one ear. I eventually had an MRI scan which showed I had inflammation of the Menancoccal lining of the brain, which my dodctor couldn't explain. Anyway to cut a long story short I have found out that my diet, which is rich in Brown Rice and also I drink Rice milk, together with the B5 is making my head pains worse or could be causing the problem. I went onto google and saw the symptoms for overdose on Pantothenic acid which mirrowed mine. The only conclusion that I can come up with is that I must now be ingesting the vitamins in my diet as I have been gluten free for 18months and the Pantothenic acid is just too much for me to cope with.
I still have all the neorological problems, like twitching and tremours, pounding in the head. I am exhausted most of the time and now that I cannot eat Brown Rice its another blow because the diet is even more restricted as I am intolerant to Soya, Milk Oats, Maize, goats milk.
The B5 acted like a steroid as it feeds the Adrenal glands, so I am going around like a rag doll at the moment.

Is there anyone else who sounds like this?
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#12 Skylark

 
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Posted 26 October 2010 - 09:15 AM

There is an expert on gluten-caused neurological symptoms in the UK who has published extensively, Marios Hadjivassiliou MD. Perhaps you could email him to ask if he knows of anyone in your area who might have some experience working with severe gluten neuropathy. I will PM you his contact info from a recent research paper.
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#13 jess7396

 
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Posted 08 November 2010 - 04:21 PM

My daughter and I believe we have neuropathy from gluten intolerance or Celiac. Mine started in March of this year, my daughter in July. My symptoms are mild, peripheral neuropathy and tremors now and then. My daughter gets severe migraines, much more persistent and painful neuropathy, and tremors as well.

The most harsh of the symptoms disappeared when we started gluten-free, but she still gets some of the symptoms which worries us that more foods might be an issue as well, or perhaps there was damage.
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#14 Becci

 
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Posted 10 December 2010 - 10:33 AM

I started having seizures before I was dx with celiac disease... The doctors told me it was all in my head. I was too young (at 15) to have all of the problems I did..

I wanted smack him! He did NOTHING of a 15 year old girl having seizures! They all completely paralyzed me until it was over, and during 1, I fell the floor and my face was stuck in blanket... I was suffocating! He said I was doing it to get attention!!
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[becci]

Celiac Disease
ABCDEFG, gummy bears are chasing me. One is red, one is blue, the yellow suckers got my shoe. ABCDEFG, gummy bears are chasing me.


#15 Gutsy Girl

 
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Posted 13 December 2010 - 09:21 PM

Hi Twitchy,

I think we've posted back and forth a few times. I have gluten ataxia with all the weird symptoms as well as celiac disease and terrible GI problems. Also emotional problems related to food reactions (Depression, ADHD, GAD, etc.).

Found this tonight online while I was doing some gluten ataxia research for myself. This is a real gem! Surprised I never read it before! Google "gluten ataxia unidentified bright objects" and you'll hit some interesting finds.

http://dfwceliac.org...rain_study.html
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Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.




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