Gluten Dude

Celiac disease is tough. And I don’t just mean it’s tough to have…which it is.

But the diagnosis itself can be really tough because the symptoms of celiac disease for one person can be totally different than the symptoms for the next person. I have heard from countless celiacs since I started my blog. And their symptoms before diagnosis were all over the map: stomach aches, diarrhea, weight loss, bad skin, bone pain, etc.

But many of them mentioned one maddening symptom above all else.

The one that is hard to put your finger on. The one that is so difficult for people without celiac disease to understand. And the one that is even more challenging to explain.

This symptom is brain fog.

What is brain fog?

Brain fog is the inability to think clearly.

It’s feeling a bit “off” without being able to clarify exactly what you’re feeling.

It’s the loss of your mental sharpness.

It’s the forgetting of words or names that should come to you easily but somehow now escape you.

It’s getting sidetracked mid-sentence and then forgetting what you were saying.

And it’s ungodly frustrating. As a matter of fact, I put this next to sheer exhaustion as my two worse symptoms when I get glutened.

I try to stay sharp; both physically and mentally. I do the NY Times crossword puzzle every morning to start my day. (Well…”attempt” to do would be more accurate. Still cannot even touch Saturday’s puzzle. I mean seriously? A four letter word for “catalan article”??)

I find this gets my brain challenged bright and early and sets me on the right mental path for the rest of the day.

But when I’m in a brain fog state? Forget about it. Nothing helps.

If you want to read an interesting article from the medical community about the gluten-brain connection, here you go. Here’s a sentence that jumped out at me:

“Many adult celiacs who have not been diagnosed and are not following a strict gluten-free diet have some of the same symptoms as persons diagnosed with schizophrenia and other mental, psychological, or emotional disorders.”

Yowsa! It still just blows me away that something that can be of absolutely no harm to so many people (I’m referring to gluten) can be so debilitating to the 1% with celiac disease.

So the next time you’re talking to me and you get the feeling that I’m just not there, it’s nothing personal I assure you. It’s just the fog of celiac disease.

19 thoughts on “The Fog of Celiac Disease

  1. Great post……how do those of us who strictly adhere to being gluten free deal with persistent symptoms of brain fog and fatigue?

    • My celiac disease was diagnosed about 5 years ago and from time to time I developed brain fog without attributing it to celiac disease. I’m also hypothyroid and I have taken Synthroid routinely for many years. Recently I have had to take increasing doses of Synthroid because my FSH was getting higher. Looking back, the brain fog seems to have started when I increased the thyroid. Does anybody else relate the brain fog to high doses of Synthroid (thyroid hormone)?

  2. I’ve been white flour free for 2 weeks now and mostly gluten free. I cannot BELIEVE how much less arthritis pain I have. My allergies have cleared up, brain fog is gone and the (easy) recipes I find online for a gluten free diet are endless, and on my ipod touch apps. Trust me, if I can go gluten free anyone can. I was a huge bread/pasta addict and something finally clicked. Now, I don’t crave it at all. I’m going to test out some recipes for gluten free breads, but for now I really enjoy Udi’s breads and bagels (gluten free). Make sure to defrost them in the micro. for 30 seconds, then toast them. Best of health to you all.

  3. If you have celiac and because of it brain fog,
    does the brain fog always disappear when you are gluthen-free?
    or does it last forever in some cases?

    best,
    katha

  4. I had never heard about brain fog related to gluten. The term really hits it on the head for how I feel. I don’t have celiac, but am intolerant. I was tested 4 years ago and had the anti-bodies in my blood.

    I felt much better taking gluten out of my diet even though it was really painful to do. Now it seems like I am feeling worse again and I am not sure why. I try to be gluten free in all things.

    My allergies are flaring up again, the pain in my feet is back, intestines never seem right, swelling everywhere, very emotional, little bumps on my skin popping up all the time. It seems like I must be getting gluten in my system somehow, but can’t figure it out. Not sleeping well, really tired…Also, my weight has increased and I can’t seem to lose weight! The brain fog is awful. I feel so stupid.

    Feeling very let down right now. I have survived many horrible things in my life (ovarian cancer, Adenomyosis , endometriosis, hyperemesis gravidarum) but am now not sure how/what to do to feel better. Everything is suffering- my family, work, me…I’m at a loss.

    Any advice? Sound familiar to anyone? Thanks!

  5. Also- Has anyone ever noticed that you have a different reaction to different kinds of gluten?

    I know I have accidentally eaten gluten a few times. A couple times at restaurants, I had asked specifically about everything, but before the meal was over, I was clammy, felt like I had the flu- dizzy, nauseated, gassy, etc… this is why I am afraid to eat out! Besides the common “rolling of the eyes” and “you are so annoying “looks I get.

    Other times, the reactions have been much more minor.

    Just wondering if different types of gluten cause different reactions.

  6. As a well controlled coeliac i have developed cough related asthma and understand that these diseases are linked but i also suffer from time to time with terrible itchyness of my feet. This is so bad that it drives me to distraction. As yet i have not had anyone identify with me re these symptoms. Does anyone else suffer ? I also get a rash but i can get the itching alone. It is definatlyely NOT fungal and my GP does not sympathise with me at all. Am i alone ??

  7. Gluten free for two years. Ate a slice of pizza and its been terrible! It didn’t hit me right away but rather couple days later. Lightheaded foggy have the runs feel unsteady and feel like I’ve been hit by a bus. Vertigo! I can’t wait till the end of the day to go straight into my bed. This is horrible. Learned my lesson for sure. Not worth it! Any advice????

  8. Ugh!

    I can relate to this so much! I used to get in trouble for “not paying attention” or “being lazy” when I was really exhausted & couldn’t focus… to the point where I couldn’t see very clearly!

    I’ve always been teased about bumping into walls & corners and being really clumsy & forgetful like leaving stuff in the wrong places, not being able to find something right in front of me or remember what somebody just said, etc.

    but after I was diagnosed this summer & went 100% gfree I swear all of that has gotten unbelieveably better, and the people close to me who used to make fun of me have noticed too. Some people have mentioned that I have more energy, more focus, and that my “eyes look clearer & brighter.”

    I definitely can tell a difference myself! My grades went up by 2 letter grades this summer! It was SO much easier to focus in class (that might have had to do with the fact that my stomach was killing me everyday!)

    Anyway – awesome post

    <3 Megan

  9. I was diagnosed with celiac disease almost 40 years ago. Method was a small intestine biopsy, and I have been on a gf diet all this time. Thankfully, there are many more food choices today.

    I experience brain fog many days. I have RIPN, Radiation Induced Peripheral Neuropathy and lymphedema in my right arm and hand s/p breast cancer and lymph node removal in 1997.

    The brain fog is very troublesome. And it is exhausting. I take levothyroid, anti-depressants and anti-anxiety meds daily. My psychiatrist started me on 60 mg cymbalta a month ago, and my energy level is improving greatly. But today is a brain fog day. Pooh!

  10. How long does usually take for the brain fog to dissapear when going TOTALLY gluten free? I’ve been 8 weeks now strictly gluten free but I’m still suffering 24 brain fog. Sometimes it gets better, sometimes worse but this weird feeling in my whole head/mind stays with me all the time (short term memory loss, lack of concentration, lack of energy…) .
    Thanks!

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