• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Do You Explain Brain-Fog To People
0

12 posts in this topic

"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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

 

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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. 

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

@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: http://en.wikipedia.org/wiki/Schisandra_chinensis 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."

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,786
    • Total Posts
      932,420
  • Member Statistics

    • Total Members
      64,267
    • Most Online
      3,093

    Newest Member
    Michelle Robinson
    Joined
  • Popular Now

  • Topics

  • Posts

    • I can tell you that the head pressure you are speaking about is one of the symptoms I am experiencing now.  And fogginess and dizziness.  I'm going to go as long as I can with my challenge. Im hoping the new GI I'm going to see will work with me. I would like him to do blood work every month to see if levels are changing.  There were so many problems with my daughter's challenge and testing. U of C at the time only recommended a 6 week challenge. And only tTG IgA and total IgA were run. Not a full panel. Well after the biopsy and when insurance wouldn't give us another referral we were told that there was a more extensive panel. By then she was gluten free and we were not going back.  
    • People are able to find a very old topic and add to it (bumping it up to current).  We need to remember to check the dates and realize that these people from 10 years ago may not respond.  Also, remember that product info, ma be even medical info, can change in that amount of time.
    • When I was changing doctors due to insurance issues, I got one doc who I told I had celiac, and had been gluten-free for 2 years. He ordered a blood test and said I DID NOT have celiac cause the blood test came back negative....I looked at him like it was crazy, told him course your not going to detect the antibodies in test if I am not eating it. Told him to go back to med school and never went back. Similar experience with another doctor around that time....funny memory glad I found one that knows about the disease to some extent.
    • ÖThe potential celiac or  NCGS  diagnosis is given to me by the Celiac researchEr.  I do not think it's official until after we meet again.  actually I have not heard of that doctors work. I will look it up and see if I can listen to an interview. Thanks for sharing.  some of the symptoms that I continue to have Had on a strict gluten-free diet or similar to what I have now  and some of them disappeared. Of course During that time I was thrown on Xanax and some Protonix even though I don't actually have acid reflux. So there may have been some symptoms that were caused by those medications but I've been off Of Them for months now.  I guess headed pressure would be one of the more prominent symptoms  that I still had on a gluten-free diet although it's much much worse recently well I'm gluten.  it was almost like I can feel a strange sensation in my gut and the head at the same time but it's nothing like what you would think it wasn't cramping it wasn't... I don't know how to describe it. it does not feel anything like sinuses it's a really strange feeling like my brain Is inflamed Or being squeezed.  When I first started getting it it scared the living crap out of me because I thought I was going to end up passing out. I would be afraid to drive alone with my young son. Now admittedly I was diagnosed with inflammation of the small intestine in late August and was gluten free throughout the fall but started eating it again in late December. So I may not have given myself a tremendous amount of time to heal from the August duodenitis.   Currently I have pain in the right rib cage area,  I also get a tremendous amount of pressure in that area mostly when I'm sitting. Kind of like when us pregnant women had a baby's foot stuck up in that area.  I get nausea on and off, some shortness of breath, dizzy,  when my brain gets that  pressure my eyes often feel it as well, and I get some transient numbness and tingling in my hands and oddly in my face.  last summer I had Random episodes of blood pressure drops as well. I would start to really not feel well and noticed that eating actually helped those episodes. I was exercising a lot At the time but ate constantly  and was maintaining my weight. One doctor theorized it might be my blood sugar dropping so I bought a monitor but I never caught that. The only thing that I did catch was when I bought the blood pressure monitor and started taking my blood pressure when these episodes were happening.   for the most part I had pretty good health up until about a year-and-a-half ago and a very strange six months or so about 13 years ago where a lot of neurological stuff happened as well. I had vertigo, visual disturbances, eye floaters, muscles twitching, ants crawling sensation on my scull, some really strange stuff. It lasted about 6 months and over time it just went away.  except for the eye floaters, they stuck around. I'm not particularly concerned about them it's just that they were not there one day and I had some visual disturbances and Bam there they were and they never went away. I have a half-sister with MS but we ruled it out for me at that time and we also ruled it out last summer as well.   I did the whole 12-week thing that they're suggesting for your daughter. We figured the six weeks wasn't long enough.  For the most part other than a few weird things I honestly didn't get strange symptoms until the end of the six weeks so 12 weeks made sense. I think I actually ended up doing 10 weeks before the biopsy This time. Nothing but the increase in IELs.  I know they only biopsy the duodenum and I wonder sometimes if it's not just lower down. But with the negative blood work except for that one random test I don't know if it's really worth pursuing any more testing at this point. I'm so tired.  I know my brother is seronegative but that's pretty rare although I have no idea whether or not they've ever done a study on if that happens to be familial.  I also would really like to know if people who test positive for TTG 6 have any gut damaged. Because if that's the case perhaps there is no seronegative celiac disease  Have you read Dr. Fasano's work?  he writes back both Celiac and ncgs.  How long are you doing your challenge for again?  I know you may be anxious for answers as well but my suggestion just from personal experience would be to go as long as you can. 
    • I should qualify that I'm actually consuming the equivalent of 1-3 slices of bread in the form of vital wheat gluten. Sometimes I have bread, if I'm eating out. But I don't really want all of the carbs and I want to demonstrate that it actually IS the gluten causing the problems and not a Fodmap issue.  My reaction to bread and my reaction to the gluten are the same.  I'm actually shocked at how quickly things have changed. My hair is starting to thin again (boo hoo 😩), and my stools are completely different and it's only been about two weeks. The headache and dizziness and nausea are the worst.  Ennis, you are right. You would think that all of these symptoms would show on blood work. Grrr. I'm hoping that the GI I'm seeing on June 7th will run a preliminary full celiac panel.  It will only be 4 weeks by then.  Will it show something?  My sister has her PhD in immunology and I remember her saying how difficult research in immunology is because you need clearly high antibodies to demonstrate anything. 
  • Upcoming Events