Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

How Do You Explain Brain-Fog To People


djs89

Recommended Posts

djs89 Rookie

"Brain fog" is difficult or embarassing to explain/justify to others. I probably come across as lazy, because I am always in a fog or daze, and cannot get tasks done on time. I always take naps, which makes me look lazy. Saying, "I'm sorry, I have a mysterious disease that hinders my cognitive abilities and makes me very tired" isn't very well understood by most people, and just looks like an excuse to not do things. But I literally cannot function normally. I am frustrated with myself for not being as productive as I should be.

 

My sister thinks I am exagerrating and it's in my head. It is true that it's in my head - these "head symptoms" are interferring with my life..it is probably not just a food problem causing my symptoms. I have cavity prone teeth as well, which I have to do something about. She told me it is my fault that I haven't gotten my health problems solved yet, which is partially true. But my family thinks everything will be cured if I see as many doctors as possible, and I know that is not true.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
GliadinX
Authentic Foods



Celiac.com Sponsor (A8-M):
Authentic Foods


powerofpositivethinking Community Regular

I would often make the comment, "I'm here physically, but not mentally."  Almost like an out-of-body experience.  This may come off as strange, but it almost felt as there was a gate sitting in the top of my brain, and now going gluten free, it feels like nothing is crunching my brain.  Again I know this sounds strange, but it's the best reference I've come up with thus far  :)

 

Have you already been tested for celiac?

djs89 Rookie

Thanks for the advice. :) No, I have not had a biopsy or colonoscopy and kind of dread the thought of having those done.

powerofpositivethinking Community Regular

I have not had a colonoscopy done, so I can't speak to that, but I was put under for the endo, and I only had a sore throat.  It really wasn't bad at all  :)

 

if you haven't gotten celiac blood tests done yet, you can ask your GP for the following:

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 

 

good luck!
 

Thanks for the advice. :) No, I have not had a biopsy or colonoscopy and kind of dread the thought of having those done.

IrishHeart Veteran

A celiac panel is painless. 

 

An endoscopy with biopsy is painless too.

 

A colonoscopy is not part of the celiac diagnosis protocol.

 

Please, get tested so you can determine if gluten and vitamin deficiencies are causing your brain fog

 

The "gluten head" I experienced for 3 years was horrible and I understand totally how you feel.

djs89 Rookie

I went to a gastro doctor a year ago and had a blood test for celiac, I don't know if it was a 'comprehensive panel' as I wasn't given the info..but they told me I don't have celiac disease. Maybe I don't, but I definitely notice a reaction to eating gluten and have been avoiding it.

 

I notice some alleviation of the symptoms when I eat more fruit/vegetables and basic food. But it's not just gluten that causes brain fog..it seems like food with sugar and gluten-free flour can cause similar symptoms. The reaction to gluten-free flour products (like spaghetti, or bread; the worst would be a pastry with flour + sugar) is similar but not as strong as with wheat flour foods.

1desperateladysaved Proficient

I described the feeling as how one feels when they are extremely tired.  Only I had it all of the time.  I didn't realize it until it cleared one day!    Now I wonder if people usually feel foggy when they are extremely tired, or if I just did because I had celiac.  Sure wish I never had to make decisions while having brain fog symptoms.

 

I am so glad to have a clear mind now!

 

D


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Food for Life



Celiac.com Sponsor (A8-M):
Lakefront Brewery


BelleVie Enthusiast

The way I explain feeling that I get when my brain fog "turns on" is by explaining that it's as if most of my life my brain is set to a certain frequency, but as soon as the brain fog starts, it's like my brain switches to a static-filled frequency. I can literally feel the shift. It's like shhhhhhhh.....click. Different mindset. Can't focus. Can't think clearly. Can barely finish sentences sometimes. The whole world looks fuzzy. 

  • 2 weeks later...
BZBee Apprentice

The symptom I hate the most and it's the hardest to overcome. I personally think it's like someone taking a vacuum cleaner to your brain.

IrishHeart Veteran

I described it to my hubs as someone dipped my brain in vaseline. I felt like I was walking in a dream sometimes. My vision was affected.

I could not drive--poor reflexes.

I could not comprehend new info and had to stop reading my books because I could not concentrate long enough to understand

a paragraph. Messed up the checkbook often. Forgot how to cook some things I have made a thousand times.

Terrible business, that was.

 

SO glad that is behind me! The longer you are all off gluten, the better you will feel.

Make sure all your vitamin levels are checked ( esp. B-12 and Folate (B9) as well as your TSH and thyroid antibodies.

If those are elevated, it could also explain some brain fog.

 

The fog clears, I promise. :)

Lawrence Apprentice

@djs89Perhaps you might want to try going to an Oriental doctor about this. Chinese medicine should be able to help if taking a multivitamin doesn't. It sounds like the energy is off in your body. I'm in South Korea and I bought some Omija tea. I'm not sure if this is available in the US but I'm pretty sure you can find it if you look hard enough. I stopped taking it because I got a rash on my feet and ankles one day and I think it may have been from the tea as that is a side effect but other times I was fine. Here is a link to an article: Open Original Shared Link somewhere I read that it can increase your ability to concentrate. Search online and there are other articles. I'm not diagnosing you just giving a suggestion. Try something like Acupuncture or some herbs, whether they are Oriental or Western. Just be sure to visit a doctor and get the right amount from a safe place. I don't think you need a pill for this and you probably wouldn't need to take the herbs all the time. Good luck with this.

 

""Brain fog" is difficult or embarassing to explain/justify to others. I probably come across as lazy, because I am always in a fog or daze, and cannot get tasks done on time. I always take naps, which makes me look lazy. Saying, "I'm sorry, I have a mysterious disease that hinders my cognitive abilities and makes me very tired" isn't very well understood by most people, and just looks like an excuse to not do things. But I literally cannot function normally. I am frustrated with myself for not being as productive as I should be.

 

My sister thinks I am exagerrating and it's in my head. It is true that it's in my head - these "head symptoms" are interferring with my life..it is probably not just a food problem causing my symptoms. I have cavity prone teeth as well, which I have to do something about. She told me it is my fault that I haven't gotten my health problems solved yet, which is partially true. But my family thinks everything will be cured if I see as many doctors as possible, and I know that is not true."

Calmom Apprentice

The best way for me to describe it is I feel like I am under water. When it clears though it is amazing.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):
    Little Northern Bakehouse
    Food for Life




    Celiac.com Sponsors (A17-M):

    Little Northern Bakehouse



  • Recent Activity

    1. - trents replied to MagsM's topic in Related Issues & Disorders
      26

      Inflammation and Menier’s disease link?

    2. - nataliallano replied to MagsM's topic in Related Issues & Disorders
      26

      Inflammation and Menier’s disease link?

    3. - Zuma888 replied to Zuma888's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Hypothetical question about antibodies

    4. - Scott Adams replied to Zuma888's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Hypothetical question about antibodies

    5. - Betsy Crum replied to Betsy Crum's topic in Related Issues & Disorders
      4

      Chest pain from celiac


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      130,234
    • Most Online (within 30 mins)
      7,748

    Sirqualls
    Newest Member
    Sirqualls
    Joined

  • Celiac.com Sponsor (A20):
    Lakefront Brewery


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Daura Damm



  • Upcoming Events

  • Posts

    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
×
×
  • Create New...