Coeliac Disease
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Why I Always Take Notes: Brain Fog and Coeliac Disease

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As a rather late tribute to Coeliac Awareness Week (9th-15th May 2016) , I thought I’d write about a lesser known symptom of coeliac disease.

Brain fog.

Though I’ve had coeliac disease since toddlerhood, I didn’t know there was a connection between brain fog and coeliac disease until about five years ago. I didn’t even know it was a thing.

I thought it was part of my personality to be a bit ditsy, a bit dopey and forgetful. A bit Bridget Jones.

Maybe it is to a certain extent, but I these intense periods of vagueness became more than that, and seemed to come and go with glutenings.

What is brain fog?

A lot of people assume that coeliac disease only affects the digestive system. This is untrue. Coeliac Disease is a multi-system autoimmune disorder. It can affect you neurologically.

When I joined internet forums about coeliac disease, I noticed the term ‘brain fog’ floating around, and saw that I was far from the only one experiencing these symptoms.

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When the fog descends, I struggle with finding the right words and recalling what tasks I’m meant to be doing. Thinking becomes like trying to wade through treacle, and important bits of info seem to be just out of reach.

I think maybe I am tired, or hungry. But then I start to get intestinal cramps and fatigue, notice I am feeling generally a bit ‘off’, and the lightbulb goes off.

It is scary to realise as a youngish twenty-something that your memory and brain power can be short-circuited just by eating the wrong food.

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Staying organised

In my professional life, I write. I plan. I organise stuff. I work on projects with other professionals. I have to be organised and be able to think on the spot and communicate effectively. All of this is a lot more difficult when you’re struggling to connect the dots in your head.  

I have to force myself to focus on one thing at a time, and remember that it’s a symptom – I know that I am not like this when I am fully well.

So I write lists. I take notes. I send emails to myself. Set calendar reminders.

I try to be as organised as possible on the good days, so that when a ‘lost day’ comes along, I can stay on top of things. 

Does this sound familiar?

Are you coeliac and ever so slightly foggy? I’d be interested to hear if brain fog is something that affects you, and how you cope with it day to day.

Until next time,

Issi x

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Read more about brain fog / neurological symptoms of coeliac disease:

Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

Cognitive impairment in coeliac disease improves on a gluten-free diet and correlates with histological and serological indices of disease severity.

A Study of Cognitive Dysfunction in Coeliac Disease and the Impact of Good Adherence to a Gluten Free Diet (ongoing)

Can Celiac Disease Affect the Brain? (NY Times)

Find out more about coeliac disease on the Coeliac UK website
Is It Coeliac Disease? Take Coeliac UK’s online symptoms assessment

Sign up for your FREE printable Coeliac Guide to Eating Out Gluten Free in London

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12 Comments

  1. Hugh says

    I’m definitely suffering as above, my short term memory is bad and getting much worse. I assumed it was me and older age (late 40’s) but now I’m wondering, on a related note I have only been a coeliac for circa 15 yrs (12 diagnosed), but have been diagnosed dyslexic since I was about 4. I now understand there may well be some correlation between Coeliac disease and Dyslexia?

    • Issi says

      I don’t know about a connection with dyslexia, but people in the comments on Facebook suggested that brain fog could be linked to having low B12 and iron, which is common amongst coeliacs due to poor gut absorption…caused by glutening. Might be worth getting a blood test and checking your levels?

  2. joan says

    I wasn’t diagnosed until late 50’s but my mother had noticed something “wrong” when I was tiny, as she died when I was 13 (of similar symptoms)so I was on my own for trying to find anything out.
    My son summed it up for me when he said I was famous for my lists & also my lists of lists as often I forget where my list is. Hard to describe to people except to say it’s as if half of your brain is inaccessible for certain periods

    • Issi says

      That’s a really good way to describe it, Joan. Good to know I am not the only list obsessive. :)

  3. Deborah Sanger says

    Wow! It’s nice to know it is something others suffer from. I was just thinking I was being dopey, or had just lost my ability to remember things as well as I used to because I was getting older (I am only 31) I have had a couple of really bad sufferings from digesting gluten so I never really associated the brain fog or feeling not with it to eating gluten. Thanks for the read good to know I am not on my own! :-)

    • Issi says

      31 isn’t old enough for that, surely. :) 25 years old here! I don’t know if it is a direct symptom from digesting gluten, or a related symptom from low B12 and iron, that can be common in coeliacs with poor gut absorption…which can be made worse by eating gluten. There’s no clearcut advice from Coeliac UK on it at time of writing, hopefully the ongoing research I linked to will help.

  4. Vera says

    Hi! I never realised my short term memory loss would be related to coeliac disease until now. I actually thought it’s a side effect of migraines which again can be a symptom of coeliac disease. Everything is connected to each other. I know the feeling of dizziness/hunger/light headedness/forgetfulness… Yet it only goes away if you follow the right diet. Listen to you body and follow the “tips” it gives you. X

    • Issi says

      Hello Vera! I agree we have to listen to our bodies…what we eat can have such a wide-reaching effect. In the Facebook comments some were saying that brain fog could be caused by low B12 and iron, which are a common side effect / symptom of coeliac disease…not sure if that also relates to migraines?

  5. Chloe says

    I am celiac and experience brain fog. It’s awful. Sometimes it’s so bad I’m a complete zombie and can’t complete even simple tasks at work. I usually get brain fog at the same time as being really low on energy. The two don’t go well together! I’d love to know if there’s a way to snap out of it!

    • Issi says

      In the comments on Facebook, some were saying that brain fog could be linked to low B12 and iron, which are common side effects of poor gut absorption due to coeliac disease. Might be worth checking out?

  6. I was diagnosed with coeliac disease in 2003, but I’ve never experienced exactly what you describe. I noticed that I was unexplainably “slower” at learning in some periods of the year (generally with the approaching of spring and warmer weather), though. Yet I never had any problem in staying focused or with my memory.

    • Issi says

      That’s good that you don’t experience this La Strega, interesting to make the connection with warm weather.

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