Celiac Disease linked to Neurological Illnesses
Getting My Mind Back
Celiac disease isn’t only a gut problem — for me, the hardest part has always been what gluten does to my mind. Here’s what I’ve lived, and what the science actually says.
A friend of mine — whose husband had just come home from a medical seminar all about celiac disease and the nervous system — read my blog and gently told me I sounded like “a textbook case of the way gluten can damage the nerves.” She was onto something. Because here’s the piece of celiac disease that too few people talk about: it doesn’t just affect the belly. It affects the brain.
What the science actually says
This part genuinely surprised me when I dug in, and it’s worth getting right. Celiac disease is now understood to be a whole-body, and very much a neurological, condition. The documented brain-and-nerve effects include gluten ataxia (balance and coordination trouble), peripheral neuropathy (numbness and tingling), migraines, seizures, and — the ones I know intimately — cognitive impairment, or “brain fog,” along with depression and anxiety. Researchers link these to inflammation, nutrient malabsorption (B12, folate, iron), and the gut-brain connection. Best of all: for many people these symptoms improve on a strict gluten-free diet, and come roaring back with even a little contamination. That has been the story of my life.
This part genuinely surprised me when I dug in, and it’s worth getting right. Celiac disease is now understood to be a whole-body, and very much a neurological, condition. The documented brain-and-nerve effects include gluten ataxia (balance and coordination trouble), peripheral neuropathy (numbness and tingling), migraines, seizures, and — the ones I know intimately — cognitive impairment, or “brain fog,” along with depression and anxiety. Researchers link these to inflammation, nutrient malabsorption (B12, folate, iron), and the gut-brain connection. Best of all: for many people these symptoms improve on a strict gluten-free diet, and come roaring back with even a little contamination. That has been the story of my life.
If you want to go deeper, I wholeheartedly recommend Celiac Disease: A Hidden Epidemic by Dr. Peter H.R. Green (Director of the Celiac Disease Center at Columbia University) and Rory Jones. Its central, and true, message: celiac is a hidden epidemic, its symptoms are astonishingly varied, and it’s badly underdiagnosed — which is exactly why so many of us suffer for years before anyone connects the dots.
The different versions of me that gluten summons
I sometimes joke that gluten gives me multiple personalities, depending on how much I’ve accidentally gotten. Let me introduce a few of them, because if you recognize yourself in any of them, you are not crazy — you may just be glutened.
The foggy, flattened me. After a real exposure, I can barely drag myself out of bed to get the kids fed and off to school. I move slowly, think slowly, can’t rise to the little disasters going on around me. The best word I have for it is this: it’s like I’d been swimming in clear, sunlit water — the kind you find in Cancun — and suddenly the water turns dark and gray, I’m far from shore, I can’t see my own hands, and I have to prayerfully feel my way back while every fear circles me like sharks in the murk. A couple of days off gluten, and it lifts like spring after a long winter. When my mind comes back, I look at where I’d been and can hardly believe how completely the fog had swallowed my ability to see clearly. My paternal grandmother, diagnosed with celiac a couple of years ago, has the “textbook” symptoms — weight loss, digestive trouble — but she says the hardest part of recovery is getting her mind back. I could not agree more.
The forgetful me. Years ago, at a mission reunion, I was asked to stand up and introduce my family — and I froze in the doorway, unable to summon my own children’s names and ages. I saw the concern flicker across my old friends’ faces, and I wanted to sink through the floor. In my work I handle numbers, reports, and balance sheets all day, and I supervise people who come to me for answers — but the first day after a glutening, I genuinely cannot compute. I’d rather be handed a toilet brush and told to scrub than be asked to think. (So that’s often exactly what I do the first day back on my feet: errands, cleaning, organizing — anything that doesn’t require a clear head.)
The irritable me. This is the one that’s most likely to surface these days, and the one I like least. Just this morning, everything was fine — the kids playing, my husband cheerfully making his famous “egg-in-a-hole” breakfast and hamming it up with his very dry dad-jokes (we gave him a charity laugh). I asked him to make me one too, and when he handed it over I asked if he’d used a clean pan. “I wiped it really well,” he said. Fifteen minutes later I could feel the energy draining out of me like a slow leak in a balloon, and the irritability rising. I wanted to fire off a furious message about his “carelessness.” Instead, I breathed through it and prayed.
I sometimes joke that gluten gives me multiple personalities, depending on how much I’ve accidentally gotten. Let me introduce a few of them, because if you recognize yourself in any of them, you are not crazy — you may just be glutened.
The foggy, flattened me. After a real exposure, I can barely drag myself out of bed to get the kids fed and off to school. I move slowly, think slowly, can’t rise to the little disasters going on around me. The best word I have for it is this: it’s like I’d been swimming in clear, sunlit water — the kind you find in Cancun — and suddenly the water turns dark and gray, I’m far from shore, I can’t see my own hands, and I have to prayerfully feel my way back while every fear circles me like sharks in the murk. A couple of days off gluten, and it lifts like spring after a long winter. When my mind comes back, I look at where I’d been and can hardly believe how completely the fog had swallowed my ability to see clearly. My paternal grandmother, diagnosed with celiac a couple of years ago, has the “textbook” symptoms — weight loss, digestive trouble — but she says the hardest part of recovery is getting her mind back. I could not agree more.
The forgetful me. Years ago, at a mission reunion, I was asked to stand up and introduce my family — and I froze in the doorway, unable to summon my own children’s names and ages. I saw the concern flicker across my old friends’ faces, and I wanted to sink through the floor. In my work I handle numbers, reports, and balance sheets all day, and I supervise people who come to me for answers — but the first day after a glutening, I genuinely cannot compute. I’d rather be handed a toilet brush and told to scrub than be asked to think. (So that’s often exactly what I do the first day back on my feet: errands, cleaning, organizing — anything that doesn’t require a clear head.)
The irritable me. This is the one that’s most likely to surface these days, and the one I like least. Just this morning, everything was fine — the kids playing, my husband cheerfully making his famous “egg-in-a-hole” breakfast and hamming it up with his very dry dad-jokes (we gave him a charity laugh). I asked him to make me one too, and when he handed it over I asked if he’d used a clean pan. “I wiped it really well,” he said. Fifteen minutes later I could feel the energy draining out of me like a slow leak in a balloon, and the irritability rising. I wanted to fire off a furious message about his “carelessness.” Instead, I breathed through it and prayed.
Be still, and know that there is a God to turn to for help. Breathe in and out, slowly. And pray.
My kids have a sweet trick for these moments: I taught them that when I get upset, they can say my late father’s name to me, and I’ll remember him and soften. My siblings and I learned young how to joke our dad out of his own anger, and though he had a temper and a colorful vocabulary, we never once doubted his love. So when my little ones say his name to calm me, it makes me want to cry more than laugh — because it’s tender, and because it reminds me how I lost him. I believe my father was an undiagnosed celiac. I will always wonder how different things might have been if we’d gotten him onto a real, naturally gluten-free diet in time. I wish, so much, that he could have held on.
A word I need to say plainly
I’ll be honest about the darkest part, because someone reading this may need to hear it. When I’m badly glutened, a heavy hopelessness can descend — and with it, thoughts I know, in my clearer moments, are not the truth. I used to tell myself those thoughts “didn’t count” because they were only the gluten talking. I don’t say that anymore, and I don’t want you to either.
Please hear this, friend. Yes — gluten can genuinely trigger real depression and dark, frightening thoughts; that’s well documented. But a thought like “my family would be better without me,” or anger so intense it scares you, deserves to be taken seriously and spoken aloud to someone who can help — no matter what set it off. It is never “just” anything. Food is part of my picture, but it has never been the whole story, and reaching for help — a doctor, a counselor, a trusted person, the Lord — is always the right and brave thing to do. If those thoughts ever visit you, please don’t wait them out alone.
Why I keep telling my story
Before I found my own answer, two different people suggested I might have a “wheat problem.” It sounded ridiculous to me — their symptoms weren’t even like mine — so I brushed it off. It wasn’t until I met someone whose symptoms matched mine exactly that I finally tried a gluten-free diet and got well. I think of a friend from BYU, a brilliant electrical-engineering student and self-diagnosed celiac, who used to need hours longer than everyone else to finish his work, studying in short bursts with constant breaks. I ran into him years later at a health food store — clear-eyed, energetic, sharp and easy in conversation. Same diagnosis, same real-food answer.
That’s the difference I’ve felt in my own life, too. Not so much in the mirror as in my mind — the clarity, the steadiness, the sheer relief of feeling like myself. When I remember the years I could barely think or walk, this way of eating feels less like a diet and more like a rescue.
So if you have unexplained brain fog, mood struggles, numbness, headaches, or exhaustion that no one has been able to pin down — please get properly tested for celiac and gluten sensitivity, and talk with a knowledgeable doctor. And if gluten does turn out to be part of your story, eat as naturally gluten-free as you can: real food, the way God made it, not the highly processed imitations. When in doubt, that’s always where I’d start.
“Be still, and know that I am God…” - Psalm 46:10
Lots of love,
Steffanie
If your mind ever turns dark. Whether it’s triggered by illness, grief, exhaustion, or nothing you can name — if you’re having thoughts of not wanting to be here, please reach out to a real person. In the U.S. you can call or text 988 (the Suicide & Crisis Lifeline) any time, day or night, and if someone is in immediate danger, call 911. You are worth reaching out for.
A note on sources: The neurological and psychiatric effects of celiac disease — gluten ataxia, neuropathy, brain fog, depression, and anxiety, many improving on a gluten-free diet — are documented by Beyond Celiac and in reviews in Frontiers in Neuroscience, Nutrients, and other medical literature. Down syndrome is a chromosomal condition (trisomy 21) not caused by parental diet or celiac; people with Down syndrome do have elevated celiac risk. Celiac Disease: A Hidden Epidemic is by Dr. Peter H.R. Green and Rory Jones.
Shared as our family’s personal experience, not medical advice. Celiac disease and gluten sensitivity require proper testing and care; neurological and mental-health symptoms deserve evaluation by a qualified provider, and a gluten-free diet is a support for mental health, never a replacement for professional care.
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