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How Do You Explain Brain-Fog To People

djs89

By djs89
in Coping with Celiac Disease

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djs89 Rookie
djs89
Posted

"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.

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

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
djs89
Posted
  • Author

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
powerofpositivethinking
Posted

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
IrishHeart
Posted

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
djs89
Posted
  • Author

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
1desperateladysaved
Posted

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

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BelleVie Enthusiast
BelleVie
Posted

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
BZBee
Posted

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
IrishHeart
Posted

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
Lawrence
Posted

@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
Calmom
Posted

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

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