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Dizziness, Disorientation For Two Weeks After Glutening?

viaggiatrice

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viaggiatrice Newbie
viaggiatrice
Posted

Hello! I've been a lurker her for several years now but this is my first time posting. I was wondering if any of you have had an issue similar to mine.

I was glutened two weeks ago. I'm super-sensitive in terms of what I'll react to, but my reactions aren't what I'd consider the MOST severe... I'll have severe stomach cramping and big D for a few days and be foggy for an extra day or so after that.

Anyway, I felt funny and took a 30 minute nap and when I woke up I was completely disoriented and the room was spinning. I had some very out-there conversations with people I knew and I don't actually remember having these conversations. This dizziness continued for a week and a half. After a couple days I began to get a dull, achy headache in the frontal area. One week later, I got a terrible, pounding headache after 10 minutes of running. I'm an athlete and had until then participated in my sport with some extra dizziness and some zoning out but it didn't affect my performance or strength... I was told by my doctor to stop working out after that and the headache became dull again and affected me all over my head (back and front this time).

Along with this, I've had short-term memory issues, irritability, and some confusion. My symptoms have cleared up the past two days but I'm extremely fatigued now. My doctor describes this all as post-concussive symptoms but it's confusing him because I never actually had a concussion. My friend just called me and reminded me that I had been glutened a couple hours before I took a nap.

Have any of you experienced this? Would gluten be worth considering as a cause of this? It's so strange and frustrating.

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Lockheed Apprentice
Lockheed
Posted

I had this exact kind of reaction to muscle relaxers. They apparently put my brain to sleep without putting the rest of me to sleep. It takes several weeks to recover from. I had one reaction that was so severe that my significant other at the time called my parents to come and stay with me for a week to have me evaluated by a neurologist. They were concerned I had had a stroke or a seizure or something else that was brain damaging. Fortunately the severe effects wore off after a week or so and the fogginess wore off after a month. But I don't take muscle relaxers anymore. In specific I had the reaction to cyclobenzaprine.

jebby Enthusiast
jebby
Posted

I had a sort of similar experience last fall. I ran a half marathon in October and then got glutened the next day. I am super sensitive and it was one of the only times that I have really been glutened and not just cross-contaminated since I was diagnosed. I had GI symptoms for about 1-2 days, then I was horribly "hung over" feeling, fatigued, and dizzy for about 2 weeks. I felt dizzy whenever I stood up, did faint one day when I was taking a shower, and I began to have right sided headaches which spread back to the occipital region. I had not had any problems with dizziness or headaches prior to the glutening.

I did have an MRI of brain, which was normal. I started to take Vitamin B12 supplements in November (500 mcg per day) and I have not had any of these problems since then, although I have also not had another glutening episode.

Did your physician order an MRI to make sure that something more serious is not going on? It doesn't make sense to be diagnosed with a concussion without a history of head trauma. Have you at least had a full neuro exam by a neurologist?

T.H. Community Regular
T.H.
Posted

It would probably be worth checking with a neurologist, or a specialist, just in case, but if you can, I'd find one who is knowledgeable about 'gluten ataxia.'

What you're describing is pretty similar, mind-wise, to what happens to me and my daughter both. Headaches, conversations and experiences I can't remember, zony/spacy feeling, vertigo and dizziness.

However...I've also had a few really nasty concussions and had similar issues. I think the biggest difference was that the pain was more localized with the concussion, and would be missing in the morning, and grow steadily the more I moved. When I was still, the pain would tend to slowly subside, with a concussion.

With my gluten issue, the head pain would come and go at seemingly random intervals. The dizziness would grow worse when I moved, including moving in a vehicle or a swing, or turning my head in a particular direction.

Beth F Newbie
Beth F
Posted

This happens to me when I get glutened. A dr. with celiac told me that once you eat wheat, you will have symptoms from that for 5 days. Just keep track some time and you will notice a pattern. The 2nd and 3rd days are always the worst for me.

viaggiatrice Newbie
viaggiatrice
Posted
  • Author

Thank you all for writing back on this. After tons of tests and an MRI, it ended up being the gluten ataxia, who would've thought? It always comes back to the gluten!

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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