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tspiggy

Member Since 18 Oct 2012
Offline Last Active Oct 15 2014 04:22 AM
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Topics I've Started

Coping With Brain Fog

12 July 2014 - 03:40 AM

Diagnosed and gluten-free nearly two years, I'm feeling 100% better.  I've got label reading, cooking, avoiding cc at home and eating out pretty much down to a science, and I take my own food to family gatherings or events like weddings (by all accounts I'm apparently not missing much at those events, lol).  I never cheat, so the only times I've ever been glutened have been from eating out.  It takes about 3 days for a reaction to kick in -- fatigue, crippling anxiety and brain fog -- and it takes on average a week to feel normal again.

 

The tiredness is never enough to affect my daily functioning; I just take catnaps here and there when I can, and I go to bed earlier than usual.  The anxiety is sometimes bad enough to affect my quality of life, and I finally realized I may have to resort to Xanax to get me over the hump until I feel better.

 

But muddling through that brain fog...lordy, lordy.  My concentration is shot, my short-term memory is ridiculous, my attention wanders frequently.  When I talk to someone my voice sounds as if it's coming from a distance.  There's a rational part that knows what's happening and that it will pass, but man, I hate feeling trapped inside my own head.  Is there anything I can do to help clear it more quickly?  I've tried drinking more water, getting more sleep, taking brisk walks to clear my head...it works temporarily but essentially I'm stuck riding it out until my body finally rids itself of the gluten.  Any suggestions?


Emotionally Right Back To Where I Was 18 Months Ago

25 April 2014 - 05:41 AM

I was DX with celiac on 10/11/12, about 18 months after initial onset of symptoms.  Except for chronic upper abdominal pain and an 11-lb. weight loss, my symptoms had been more neurological than digestive: massive brain fog, occasional tingling in hands and feet, chronic fatigue.  The worst was raging anxiety and panic attacks, followed by crushing depression.  The doctor who diagnosed my celiac clearly knew next to nothing about it -- he actually said I could occasionally cheat and eat gluten.  I was left on my own to research my condition as well as what I could and couldn't eat.  With my gluten-induced anxiety levels so high, my research sent it through the roof.  I posted questions on this forum about coping mentally with the disease and how to manage the fear, and was reassured by a lot of caring people.

 

With the help of my wonderful nutritionist, I responded quickly to the gluten-free diet.  In two months my abdominal pains were gone and my energy returned.  In six months all the other symptoms resolved themselves and I gained back all the weight I'd lost.  I didn't seem to have any additional food intolerances.  After time, effort and a couple of accidental glutenings, I mastered the lifestyle and it became second-nature.  My anxiety, while not entirely gone, improved tremendously and my mood improved.  I felt well and optimistic for the first time in a couple of years.

 

Even prior to diagnosis I continued to have annual routine exams, but the doctors couldn't figure out what was wrong with me.  All my blood work was normal.  Thyroid functions were normal, I had no anemia or other deficiencies.  The celiac panel is what caught the disease and confirmed by endoscopy.  It seemed I was very fortunate to have been diagnosed only 18 months after onset of symptoms and seemingly before any serious complications set in.

 

Earlier this week I felt mentally strong enough to go back to researching celiac information online.  I found a blog that I thought was the answer to my prayers.  But I started reading one story after another from celiacs who developed food intolerances or other illnesses after being gluten-free for years and my anxiety ramped up again.

 

I feel well.  I've been feeling well for nearly a year.  My most recent blood work last November showed no deficienices and everything to be normal.  Even my monocyte levels were normal (they were sky-high at diagnosis).  Based on exams and test results I appear to be healthy except for the celiac.  I thought that by avoiding gluten (accidental exposure notwithstanding) and eating healthy my gut would eventually heal and I'd be ok.  Now I was reading stories about people who were developing other illnesses after being gluten-free for years.

 

So now I'm emotionally back to where I was 18 months ago, except that I feel physically well but scared to death, anxious as all hell and unable to deal.  I've gotten nothing accomplished all week because fear has kept me paralyzed.  I need reassurance.  I need answers.  My nutritionist has already warned me that I will not heal if I don't learn to manage my stress levels, and until I read those blog posts I had it all under control.  How do you manage the fear and the knowledge that even doing everything right there's still the possibility of complications down the road?  I can't imagine living the rest of my life with this fear.  That's not living.