Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dizziness, Disorientation For Two Weeks After Glutening?

viaggiatrice

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,393
    • Most Online (within 30 mins)
      7,748
    HeckelCrazy
    Newest Member
    HeckelCrazy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.