• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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
      107,377
    • Total Posts
      935,758
  • Member Statistics

    • Total Members
      65,063
    • Most Online
      3,093

    Newest Member
    caitilnr222
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Everyone!  Thank you for all your responses!  This site is so helpful and I appreciate everyone who replied to my post.   I was able to get an earlier appt with Maureen Leonard who was absolutely wonderful like you all said and after more testing and even a genetics test, my son now has a diagnosis of celiac disease.  He's been gluten free now for a few weeks.  He is doing very well on the diet so far.  He does seem to be sleeping better which was always a problem since he was an infant, so that is a good sign!  We test in 3 months and I hope that his iron levels go up. 
    • Are you substituting something for the PPI?    I'm not sure what meds will mix well with it, but you could ask the pharmacy or Dr. for advice on what might work.   I'm thinking you stopped something that may be helping in some ways, and are now allowing your symptoms to return.   If so, it makes sense to find something else to help with symptom control.   I don't know what products you have there.   We have Tums (calcium carbonate), Gaviscon (aluminum hydroxide with magnesium carbonate), Pepto and Kaopectate (same product), and Gas-X (simethicone).    I believe all of these can be taken with PPIs, but do check.    I don't know that Pepcid (Famotidine) can be mixed, but you could check that, too.   The Gas X really helps with the bloating and odd pains, as it breaks up the gas.  The Tums seems to help neutralize the acid and upset stomach / stomach pain.  These two are my mainstays.  You may have other products that could be as effective. Have you tried mixing bone broth with cornstarch or gluten-free flour to make a gravy?  Mix in some ground beef, chicken, or turkey, add some gentle veggies (carrots, or maybe a can of Chinese veggies?), a little bit of gentle spices for taste, and then put over gluten-free pasta or white rice.  Make a chicken sandwich with gluten-free bread.   Can you tolerate mayo?   Put a sprinkle of salt, pepper, and lemon juice on salmon, then coat with mayo and microwave.   Or mix some mayo with chicken or tuna for a chicken salad / tuna salad sandwich;  or eat just a scoop of it.   If you can tolerate dairy, Schar's newest version of table crackers are like saltines and are tasty.   If no dairy, try their breadsticks.  You could have either with soup or bone broth.   Schar's has enough fat to give you calories to help stave off weight loss, and you can add more by brushing a little butter on the crackers. You could try other casseroles with tuna or some lean ground hamburger.  Have you also looked at a possible new food intolerance?   I suffered for a few weeks before I figured out it was dairy for me.   Eliminating dairy wasn't enough.   I had to get rid of anything that might upset my stomach in order to start getting better.  I printed lists of low FODMAP, low acid foods, and low lectin foods, then selected only those foods that were on all 3 lists.   You might consider doing this with food lists that are right for you.  Hope this might spark some ideas!    
    •  I have a friend with MS, another with breast cancer and a third with RA.  At the same age my only problem is I cannot eat gluten!  So when I start getting frustrated about food I think about that and how lucky I truly am.  Once you get in the swing of it it gets easier and then you start to feel better which makes it all worth it.    Also when I first went gluten-free I read on this group about Mark's daily Apple and the Paleo community. I turned to that which was extremely motivating.  I've never seen so many people so excited about not eating gluten. It was a very positive energy and motivated me to find other foods to eat. Also, they love bacon! 
    • I know I needed the confirmation.  My hubby went gluten free per the very poor advice from my allergist and his GP.   It worked, but we really do not know if he has celiac disease.  He refuses to do a gluten challenge and I do not blame him.  We do know that gluten makes him sick.  He has been gluten free for 16 years.   So, when my GI suspected celiac disease, I could not believe it.  I had no tummy issues at the time, but was anemic.  Had been my whole life and it was blamed on a genetic anemia and menstruation.  I knew what being gluten free meant and I did not want to have celiac disease.  But,   I got positives  on the DGP and my biopsy.    Nothing like seeing something in writing.  I showed that to my extended family who was in denial as well.   I had a shared household with hubby all those years.  But after my diagnosis and the fact my kid started making things in the kitchen, we all went Gluten Free.  Great kid, but I could not trust her with my health!  If you DD has small siblings, consider all going gluten free.  They can eat gluten outside of the house.  That is what my kid does.  
  • Upcoming Events