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Betty Boop

Stroke-Like Symptoms

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Just wondering if any of you have experienced anything like this...

I was travelling with my husband, and ate some cheese on a room service cheese/fruit platter. I eat gluten-free cheese all the time at home. Later, I found out that all the cheeses I ate on the platter contained gluten!

The next day, I had stroke-like symptoms (amnesia). I couldn't remember where we had been, how we had come to the restaurant, etc. My memory came back after just 20-30 minutes. I spent the night in the hospital, going through a battery of tests, which were all normal. The doctors concluded it was probably transient global amnesia, or TGA.

Is there any chance this could have been related to eating gluten? I was diagnosed last April and have eaten a totally gluten-free diet since then, so eating all this gluten-filled cheese was a very dramatic event for my body. I suggested this to the doctors, but all of them all but rolled their eyes at me.

Crazy! B)

Betty Boop

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Just wondering if any of you have experienced anything like this...

I was travelling with my husband, and ate some cheese on a room service cheese/fruit platter. I eat gluten-free cheese all the time at home. Later, I found out that all the cheeses I ate on the platter contained gluten!

The next day, I had stroke-like symptoms (amnesia). I couldn't remember where we had been, how we had come to the restaurant, etc. My memory came back after just 20-30 minutes. I spent the night in the hospital, going through a battery of tests, which were all normal. The doctors concluded it was probably transient global amnesia, or TGA.

Is there any chance this could have been related to eating gluten? I was diagnosed last April and have eaten a totally gluten-free diet since then, so eating all this gluten-filled cheese was a very dramatic event for my body. I suggested this to the doctors, but all of them all but rolled their eyes at me.

Crazy! B)

Betty Boop

I've only been dealing with the whole world of gluten-free living since getting my diagnosis in late April '09 but in that short time there's a few HUGE lessons I've learned...

1.) Not everyone reacts the same way to gluten. (Wide range of symptoms reported in this forum's posts)

2.) Not every gluten reaction you have will be the same as the others (more about that in a minute)

3.) Health "professionals" can sometimes be some of the most UN-professional people around and often quickly dismiss things that don't fit into the nice, neat little boxes of what symptoms you're "supposed" to have.

4.) Eliminating one food intolerance might just uncover others. (see below)

I'll start with #3 & #4 first. Prior to my diagnosis, I had long suspected that my symptoms were due to lactose intolerance and had naturally started avoiding most overt dairy products such as a glass of milk, bowl of ice cream, etc. It seemed to help at first but, as my symptoms continued to worsen, I realized that more was going on. I was told by my first doc that my symptoms were 'all in my head' and that I needed to 'forget this foolishness about celiac disease'(#3). Went gluten-free on my own - symptoms resolved after several months. Hooked up with a new doc - wanted me back on gluten to do 'proper' testing (serologic & colonoscopic) - immediate return of watery diarrhea and all neurological symptoms. Suffered horribly for 12 days before I refused to continue with regular diet. Did genetic testing - positive DQ2.2. Doc said she was confident giving me a celiac disease diagnosis on the strengths of my gluten challenge response and DQ2 and would not press for a colonoscopy. Went back to gluten-free diet and felt well, was even able to eat dairy again. Recently been noting stomach pains, bloating, gas and, of all things, significant dizziness within 20-30 minutes of eating dairy. Currently investigating for developing casein reaction.(#4)

As for #2...I had a nasty reaction to an accidental glutening back in Oct. Was driving when I suddenly "saw" a blank spot in my vision that continued to grow until it eclipsed the whole left side of my visual field. The headlights of oncoming cars seemed atrociously bright and my left eye watered like the Niagara Falls. A debilitating headache followed shortly afterward and my whole body felt like there was an electrical charge building up that was going to violently discharge at any moment. Ended up in the ER, blood pressure 145/102 and scared like hell when the staff said I could be having a stroke. A ton of tests and a CT later the doc said I'd most likely had a gluten-induced migraine with amaurosis fugax, a specific type of migraine aura. I had dull headaches all the time before I went gluten-free, but never migraines...and certainly not with the visual loss! My blood pressure's usually in the 110's over 70's so the hike was pretty significant. Doc said the amaurosis stuff is due to some sort of vascular spasms or something and likely was what drove my BP up, too. As a side note, a friend of mine told me later that he gets symptoms very similar to the electric charge thing I was describing...right before he has a grand mal seizure. I've read that gluten exposure in a sensitive person CAN cause seizures and I'm convinced I was close to one that day. The whole experience has certainly made me extremely careful what I eat. I never want to feel like that again! Anyway, the whole purpose of that was to show that you can have reactions today that are entirely different from reactions you've had in the past. I've heard many people on this board say that their reactions are worse after being gluten-free for an extended period of time, so maybe that's what happened to you...especially since you were 'glutened' pretty heavily.

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I've only been dealing with the whole world of gluten-free living since getting my diagnosis in late April '09 but in that short time there's a few HUGE lessons I've learned...

1.) Not everyone reacts the same way to gluten. (Wide range of symptoms reported in this forum's posts)

2.) Not every gluten reaction you have will be the same as the others (more about that in a minute)

3.) Health "professionals" can sometimes be some of the most UN-professional people around and often quickly dismiss things that don't fit into the nice, neat little boxes of what symptoms you're "supposed" to have.

4.) Eliminating one food intolerance might just uncover others. (see below)

I'll start with #3 & #4 first. Prior to my diagnosis, I had long suspected that my symptoms were due to lactose intolerance and had naturally started avoiding most overt dairy products such as a glass of milk, bowl of ice cream, etc. It seemed to help at first but, as my symptoms continued to worsen, I realized that more was going on. I was told by my first doc that my symptoms were 'all in my head' and that I needed to 'forget this foolishness about celiac disease'(#3). Went gluten-free on my own - symptoms resolved after several months. Hooked up with a new doc - wanted me back on gluten to do 'proper' testing (serologic & colonoscopic) - immediate return of watery diarrhea and all neurological symptoms. Suffered horribly for 12 days before I refused to continue with regular diet. Did genetic testing - positive DQ2.2. Doc said she was confident giving me a celiac disease diagnosis on the strengths of my gluten challenge response and DQ2 and would not press for a colonoscopy. Went back to gluten-free diet and felt well, was even able to eat dairy again. Recently been noting stomach pains, bloating, gas and, of all things, significant dizziness within 20-30 minutes of eating dairy. Currently investigating for developing casein reaction.(#4)

As for #2...I had a nasty reaction to an accidental glutening back in Oct. Was driving when I suddenly "saw" a blank spot in my vision that continued to grow until it eclipsed the whole left side of my visual field. The headlights of oncoming cars seemed atrociously bright and my left eye watered like the Niagara Falls. A debilitating headache followed shortly afterward and my whole body felt like there was an electrical charge building up that was going to violently discharge at any moment. Ended up in the ER, blood pressure 145/102 and scared like hell when the staff said I could be having a stroke. A ton of tests and a CT later the doc said I'd most likely had a gluten-induced migraine with amaurosis fugax, a specific type of migraine aura. I had dull headaches all the time before I went gluten-free, but never migraines...and certainly not with the visual loss! My blood pressure's usually in the 110's over 70's so the hike was pretty significant. Doc said the amaurosis stuff is due to some sort of vascular spasms or something and likely was what drove my BP up, too. As a side note, a friend of mine told me later that he gets symptoms very similar to the electric charge thing I was describing...right before he has a grand mal seizure. I've read that gluten exposure in a sensitive person CAN cause seizures and I'm convinced I was close to one that day. The whole experience has certainly made me extremely careful what I eat. I never want to feel like that again! Anyway, the whole purpose of that was to show that you can have reactions today that are entirely different from reactions you've had in the past. I've heard many people on this board say that their reactions are worse after being gluten-free for an extended period of time, so maybe that's what happened to you...especially since you were 'glutened' pretty heavily.

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Big Dogs! I have a question for you. The other night I got up in the middle of the night and all of a sudden felt dizzy, like I was going to pass out, or throw up or something was going to happen. I felt this enormous amount of heat that felt like it was rising from the bottom of my body slowly up to the top and I had a loud ringing in my ears. I laid down and after the ringing stopped fell asleep. I thought it maybe was a hot flash or something (I'm on birth control) but it was the weirdest, scariest thing! I even told a friend about it saying "I thought I was having a stroke or something!" Now I'm only 22 and not overweight or a smoker or anything, which is why I later decided it was a hot flash. But is that similar to what you experienced?

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Big Dogs! I have a question for you. The other night I got up in the middle of the night and all of a sudden felt dizzy, like I was going to pass out, or throw up or something was going to happen. I felt this enormous amount of heat that felt like it was rising from the bottom of my body slowly up to the top and I had a loud ringing in my ears. I laid down and after the ringing stopped fell asleep. I thought it maybe was a hot flash or something (I'm on birth control) but it was the weirdest, scariest thing! I even told a friend about it saying "I thought I was having a stroke or something!" Now I'm only 22 and not overweight or a smoker or anything, which is why I later decided it was a hot flash. But is that similar to what you experienced?

If it came on when you went from laying down to standing, it was probably orthostatic hypotension (from Wikipedia: "Symptoms, which generally occur after sudden standing or stretching (after standing), include dizziness, euphoria, bodily dissociation, distortions in hearing, lightheadedness, headache, blurred or dimmed vision (possibly to the point of momentary blindness), generalized (or extremity) numbness/tingling and fainting, coat hanger pain (pain centered in the neck and shoulders), and in rare, extreme cases, vasovagal syncope. They are consequences of insufficient blood pressure and cerebral perfusion (blood supply). Occasionally, there may be a feeling of warmth in the head and shoulders for a few seconds after the dizziness subsides." There are lots of things that can contribute to it, and some people are just prone to it individually.

Stroke symptoms tend to be one-sided. (But, of course, are not always.)

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If it came on when you went from laying down to standing, it was probably orthostatic hypotension (from Wikipedia: "Symptoms, which generally occur after sudden standing or stretching (after standing), include dizziness, euphoria, bodily dissociation, distortions in hearing, lightheadedness, headache, blurred or dimmed vision (possibly to the point of momentary blindness), generalized (or extremity) numbness/tingling and fainting, coat hanger pain (pain centered in the neck and shoulders), and in rare, extreme cases, vasovagal syncope. They are consequences of insufficient blood pressure and cerebral perfusion (blood supply). Occasionally, there may be a feeling of warmth in the head and shoulders for a few seconds after the dizziness subsides." There are lots of things that can contribute to it, and some people are just prone to it individually.

Stroke symptoms tend to be one-sided. (But, of course, are not always.)

Yes that sounds a lot like what happened. I didn't really think it was a stroke, I just had no idea what was happening at the time. It was really scary. I just wasn't sure if something like that was actually dangerous or was just another crazy gluten reaction. I tend to be very sensitive to it I think. But that was the first time for that. Thank you very much for the information, I had someone else tell me that if you stand up too fast from sleeping it can do crazy things to you. I can't believe there's a name for it, lol!

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