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"Gluten Paralysis" Questions

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I'm undiagnosed, and I'm looking for answers concerning my apparently rare "gluten paralysis" problem, which has been occurring on every gluten exposure following the first couple weeks on a gluten free diet [which I've maintained for two years now, and was vitally necessary and brought profound health improvements, more backstory trivia on profile].

If anyone knows what this might be, or suffers similar symptoms, please post any relevant information. I intend to see serious light shed on this, especially if it's a problem for others. At the least, the next person to search "gluten paralysis" will FIND something, so that might save someone many months.

Even small quantities of gluten [such as touching foods containing gluten while preparing them for others, caramel coloring from a soy sauce packet, the starch in a regular strength ibuprofen tablet] will, several hours later [2 to 6-ish?], result in an inability to move.

It's a temporary near-paralysis preceded by about thirty minutes of diminishing mental and physical alertness. It lasts two to four hours. All skeletal muscles below my eyes become sluggish at best, and often refuse to move when I "tell" them to move. This extends to dyspnea and apnea. In bad cases [more gluten], there's also a high level of focused abdominal pain during the worst parts [the sensation insists that it's somewhere near the pancreas or stomach, but I know that abd pains often don't care if they're holding the map sideways and upside down...].

I'm always in a rational, somewhat normal state of mind/emotion through the episode, although there's often fogginess and difficulty in thought. At least twice I've lost consciousness and woken to spend several hours with hemiparesis or aphasia [interestingly, predictably and comically, I could only form sentences from seemingly random words and vulgarities, although I could understand others]. Throughout the episodes, sweating and the urge to urinate will disappear completely, my mouth and throat become uncomfortably dry, and when I have the good fortune to have someone put a drink to my mouth [i aim for fruit juice, or water], the outcome seems improved.

When coming out of these episodes, my movements are very shaky and the fluid situations reverse; not alarmingly, but unusually. Those effects may or may not be due to "holy expletive, why the expletive does this keep happening" syndrome, which has been difficult [or perhaps impossible, by mechanism] to avoid. For almost a week afterward, I experience fogginess, non-muscular fatigue, low physical/mental energy levels, however one wants to put it, then I'm gradually back to normal again. [so far. As far as I can tell.]

Most importantly I want to know how this is happening, so I can better prepare to prevent or minimize damage in the future. Since it's also been the source of a lot of... really lousy interpersonal misunderstandings around me [family, marriage, legal, financial, etc], it would be good to know of any way I might get a diagnosis without subjecting myself to possible brain damage more than once. Even if once is the only way I can do it, I'd like to have something helpful ready to be used.

Any ideas are welcome.

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I would get to a neurologist. They may need to give you gluten and try to bring on an episode while they do an EEG and possibly an MRI or other testing to really tell you what is happening.

I also have neuro impact from celiac. I have ataxia, although it is now much better. I had pretty severe nerve damage that started in childhood and it did take some time to recover but what is happening to you sounds much different from ataxia. I did have problems with aphasia and still do to some extent but most of time I can find the words to say what I need to now. Like you I can understand others but not find the words to reply or I would say something weird like calling the dog a fork.

I did have to be super super strict, and still am. I also am sensitive to gluten grains even in distilled products and you may want to avoid that also. Once you have recovered fully if you want you could add them back in and see if you tolerate them.

If you live close to a major celiac center you might want to contact them.

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I thought I was the only one.  I've had the same  reaction three times in my life.  It's a very frightening experience.  In my mind I say move my hand but I can't move or have a very delayed reaction.  I can't speak or move and it can last over an hour.  My mind is alert but my body can't react. I become almost catatonic or as if I'm in a coma.  I also have this immense body ache.  It happened this morning again. Hasn't happened in three years.  I'm not sure what triggered it.  I've been following my gluten free diet pretty well.  I did have cheese which I can not eat.  But I doubt it's related to that. I also went to the dentist which I heard can cause gluten reactions because of the chemicals they use. My mom took me to the er during one episode and the docs couldn't  cfind anything they thought I was on drugs and when they tested me for drugs and of course I was clean they sent me home because they were clueless.  I Hope one day people will find an answer to this.

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I have been gluten-free for 3 years now and was not tested in advance. I will not go into great detail on all my symptoms but I had complete reversal of lower abdominal pain (under investigation initially for endometriosis), reversal of tender red plaques on my knees and elbows, reversal of indigestion and massive improvement in dust mite allergies and asthma, and I quickly improved in body composition energy and stamina. Currently I test negative for all celiac tests which can be performed in the absence of eating gluten. I cross-react to whiskey and gin (just figured that one out unfortunately). Soy sauce has not been a problem. Currently, if I become glutened I have immediate onset of a mental haze, a vague dizziness and a feeling of global inflammation. I use a laxative tea and find this to improve my subsequent weeks. After 2-3 days I experience severe loss of activity tolerance and am no longer able to perform even minimal exercise. Whereas I typically participate in high impact plyometrics 3-4 hours a week for the past 3 years. If I try to exercise it feels like my quads can't get oxygen and I loose coordination and function. Later I develop severe cramping of (best guess) intestines uterus and bladder. 

 

On my recent journey, discovering I was sensitive to gin and whiskey, I was found to have low iron (50%below normal minimums) despite a completely normal HCT/HGB. Taking supplemental iron has dramatically improved my symptoms and I no long have the severe "death fatigue"/paralysis and instead have a frustrating but much milder fatigue and weakness. I currently experience occasional severe stabbing abdominal pain, burning pain (referred I suspect) in my quadriceps and iliopsoas muscles, menstrual spotting and bladder spasms, most severe in the first 2-3 weeks after exposure and gone by 6-8 weeks. If I try to exercise in the first 2-4 weeks I will be floored quickly and for several days.  Currently i have found Bentyl to be very helpful for the pain aspect, though convincing the ER doc that I was experiencing GI distress was challenging. Bentyl allowed me to eat solid food after a week on broth and coconut water after a cross contamination issue. 

 

I do feel paralyzed after gluten, and these things have helped me manage when an emergency has happened

I'm sorry to ramble. Without a diagnosis, my experience may or may not be helpful to you. All said. If you have not had your iron checked. Please do. Non-anemic iron deficiency made me feel like I was nearly dead. As in, I was too tired to lay in bed and can't believe I didn't have bed sores after a week. And every other blood test, ultrasound, CT scan was completely normal. 

When I am gluten-free, I feel like super-woman and don't even need caffeine to run circles around most of my peers. Celiac or not, I prefer not to eat something that makes me feel like I have been poisoned.   Best of luck to you all. 

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11 hours ago, Rleestewart said:

I have been gluten-free for 3 years now and was not tested in advance. I will not go into great detail on all my symptoms but I had complete reversal of lower abdominal pain (under investigation initially for endometriosis), reversal of tender red plaques on my knees and elbows, reversal of indigestion and massive improvement in dust mite allergies and asthma, and I quickly improved in body composition energy and stamina. Currently I test negative for all celiac tests which can be performed in the absence of eating gluten. I cross-react to whiskey and gin (just figured that one out unfortunately). Soy sauce has not been a problem. Currently, if I become glutened I have immediate onset of a mental haze, a vague dizziness and a feeling of global inflammation. I use a laxative tea and find this to improve my subsequent weeks. After 2-3 days I experience severe loss of activity tolerance and am no longer able to perform even minimal exercise. Whereas I typically participate in high impact plyometrics 3-4 hours a week for the past 3 years. If I try to exercise it feels like my quads can't get oxygen and I loose coordination and function. Later I develop severe cramping of (best guess) intestines uterus and bladder. 

 

On my recent journey, discovering I was sensitive to gin and whiskey, I was found to have low iron (50%below normal minimums) despite a completely normal HCT/HGB. Taking supplemental iron has dramatically improved my symptoms and I no long have the severe "death fatigue"/paralysis and instead have a frustrating but much milder fatigue and weakness. I currently experience occasional severe stabbing abdominal pain, burning pain (referred I suspect) in my quadriceps and iliopsoas muscles, menstrual spotting and bladder spasms, most severe in the first 2-3 weeks after exposure and gone by 6-8 weeks. If I try to exercise in the first 2-4 weeks I will be floored quickly and for several days.  Currently i have found Bentyl to be very helpful for the pain aspect, though convincing the ER doc that I was experiencing GI distress was challenging. Bentyl allowed me to eat solid food after a week on broth and coconut water after a cross contamination issue. 

 

I do feel paralyzed after gluten, and these things have helped me manage when an emergency has happened

I'm sorry to ramble. Without a diagnosis, my experience may or may not be helpful to you. All said. If you have not had your iron checked. Please do. Non-anemic iron deficiency made me feel like I was nearly dead. As in, I was too tired to lay in bed and can't believe I didn't have bed sores after a week. And every other blood test, ultrasound, CT scan was completely normal. 

When I am gluten-free, I feel like super-woman and don't even need caffeine to run circles around most of my peers. Celiac or not, I prefer not to eat something that makes me feel like I have been poisoned.   Best of luck to you all. 

Just a clarification - you say you don't react to soy sauce....are you talking about gluten-free soy sauce or regular soy sauce with wheat?

Edited by kareng
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Hey all, I posted in 2015 thinking my problems were related to gluten.  Turns out for me I have Lyme disease which what was causing the paralysis issues.  People with Lyme do feel better when on a gluten free diet so that's maybe why I thought my issues were from gluten.  I hope everyone finds out the mystery surrounding this whether it stems from Lyme or gluten.  I know how stressful it is not being able to know why and having the doctors dismiss the symptoms.  I finally found a doctor who cares. Good luck everyone

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Thanks for the update.  It's nice to get a follow up from people, and find out what new information they've learned about their conditions.

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This also very closely describes my situation and symptoms. 

About 11 years ago I responded well to going gluten free after having various health issues and severe digestive issues.

In the years following I would "cheat" a bite once or twice a year and suffer the terrible stomach pain, skin pain and malaise that followed. But as I learned more about the potential damage I was doing to my body, I stopped cheating. 

 

The last two times I have been exposed to gluten I have become what I described as paralyzed, where my body loses all strength and ability to move. It starts like a heavy wave of weakness coming over me, stealing my movement. Once I'm down, even if I tell myself to move in my head, nothing happens. My head is foggy and it feels quite out of body. I remember the first time it happened wondering if this is what it feels like to die. I can't focus my eyes, but stare at the wall or ceiling, I don't want to close my eyes, just stare. I can't really form words and mumbling takes much focused effort. The first time it happened I think it probably lasted about 30 minutes. The second time there were three episodes, each lasting about 20-30 minutes spread over a couple of hours. Then slowly my faculties seem to return. Each time, I have spent the rest of the night throwing up bile, no food - even though on both occasions I'd eaten a full meal - just bile coming up for hours.

Strangest and scariest heath experience of my life. And so few answers to be found. I'd love to stay in touch with anyone experiencing similar symptoms and keep up to date on any research being done in this area. 

 

To add, I've avoided getting celiac disease tested because I just don't want to voluntarily choose gluten exposure for the sake of a diagnosis, when my symptoms speak for themselves. Also $$$ :\  

Happy gluten free trails, everyone. And wishing you all great health. 

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15 hours ago, ladydex said:

This also very closely describes my situation and symptoms. 

About 11 years ago I responded well to going gluten free after having various health issues and severe digestive issues.

In the years following I would "cheat" a bite once or twice a year and suffer the terrible stomach pain, skin pain and malaise that followed. But as I learned more about the potential damage I was doing to my body, I stopped cheating. 

 

The last two times I have been exposed to gluten I have become what I described as paralyzed, where my body loses all strength and ability to move. It starts like a heavy wave of weakness coming over me, stealing my movement. Once I'm down, even if I tell myself to move in my head, nothing happens. My head is foggy and it feels quite out of body. I remember the first time it happened wondering if this is what it feels like to die. I can't focus my eyes, but stare at the wall or ceiling, I don't want to close my eyes, just stare. I can't really form words and mumbling takes much focused effort. The first time it happened I think it probably lasted about 30 minutes. The second time there were three episodes, each lasting about 20-30 minutes spread over a couple of hours. Then slowly my faculties seem to return. Each time, I have spent the rest of the night throwing up bile, no food - even though on both occasions I'd eaten a full meal - just bile coming up for hours.

Strangest and scariest heath experience of my life. And so few answers to be found. I'd love to stay in touch with anyone experiencing similar symptoms and keep up to date on any research being done in this area. 

 

To add, I've avoided getting celiac disease tested because I just don't want to voluntarily choose gluten exposure for the sake of a diagnosis, when my symptoms speak for themselves. Also $$$ :\  

Happy gluten free trails, everyone. And wishing you all great health. 

Yeah I have a sort of gluten ataxia, it effects my nervous system and brain. Straight gluten poisoning can cause complete motor loss where I just drop to the floor unable to move, I also get the vomiting around this time....yeah stuck unable to move in a pile of your own vomit.  I have a lingering effect for weeks after were I have extreme numbness in my hands and feet and weakness. Always have a bit of loss of feeling due to nerve damage from it, and some other issues from brain damage. 

 

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