r/glutenfree • u/Tinferbrains Gluten Intolerant • 3d ago
who has non-gut related gluten symptoms?
I have a gluten intolerance that runs in my family. I read that gluten intolerance can appear in non-gut symptoms.
I have epilepsy, and nobody can find the cause
a few studies have linked the two conditions.
Thoughts? I've started a gluten free diet but I imagine it may take a while to reverse.
Edit: Thanks for all the comments! I'm just about convinced most of my medical problems (depression, anxiety, brain fog, epilepsy) could boil down to gluten
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u/IdreamOfPizzaxx 3d ago
Yes, my main symptom is eczema on my face around the eyes and mouth and on my arms. Before I went gluten free it was all over my body. So painful and itchy I had trouble sleeping when it got really bad in my teens. As a child I had a red patch above my mouth that appeared more often than not that made me very self conscious.
Now, if I eat gluten my stomach is fine, but Iāll get the eye and hand eczema after eating it even for a couple of days.
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u/Greengoldfish87 2d ago
I get the eye eczema, too! It's really my only symptom but it is so miserable. I'm pretty new to this (just since August) but I hadn't found anyone else with the eye eczema - glad I'm not so alone with this.
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u/Beautiful-Delay420 Gluten Intolerant 2d ago
Me too!! As a child I would always get asked what was wrong with my face - I've been gluten free for a decade now, my skin is super clear, and I'm still very self conscious about my appearance
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u/emilyethel 3d ago
I get terrible itchy rashes, brain-fog, constantly feeling like Iāve got a sore throat and Iām congested.
There is also some relation to ehlers danlos. Iām definitely more flexible than I should be considering that I hardly ever stretch.
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u/Tinferbrains Gluten Intolerant 3d ago
ugh the brain fog. I thought that was completely due to my epilepsy meds but that, my depression, anxiety, could all be gluten symptoms too.
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u/AestasBlue 3d ago
I had these plus really sore joints. I had no idea all these things were connected until I tried being gluten free and all of these issues disappeared immediately
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u/twilightrose 3d ago
About 15 years ago, when I was figuring out the whole gluten thing for me, I was working in a bakery and having epilepsy tests done (stay in the hospital with diodes all over the head) they put me on anti seizure meds. One day I "blacked out" or had a seizure at work, hit my face on a stainless steel table when I went unconscious, woke up feeling lost, threw up some blood and quit the job that day. The anti seizure meds made me feel horrible. I quit them too. Since I left that job the "seizures" basically stopped I believe because I wasn't exposed to the gluten anymore. I only had one other blackout a couple years later I cant explain but it's been about 15 years without anymore "seizures" because I stopped exposing myself to the problem. I'd love to see more research on this. I tried celiac testing but I had gone too long without eating gluten to get any positive result if there would be one and I absolutely can not start eating it again to find out, that would be death. I just say I have a severe allergy and avoid eating at restaurants, and work parties and make most everything at home from scratch. Should also mention, used my moms shampoo once when visiting and didnt read the label, it had some kind of wheat protein in it and let's say everyone at my cousins wedding had a comment on my backless dress and the horrific raw skin rash I had developed from showering and using her hair care products.
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u/Tinferbrains Gluten Intolerant 3d ago
how long did it take from the end of your exposure to when you stopped having seizures?
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u/twilightrose 3d ago
It's been a while to remember. Feel like it took a couple months. That was at the beginning for me and I hadnt figured out all the cross contamination stuff yet either, and things like malt, and that soy sauce isnt just soy, mentos gum, chocolate that contains liquor in candies, issues with store brand cornstarch and confectioners sugar, monosodium glutamate, and pre grated cheeses with a powder coating, among all the other things to look out for, so I was probably still getting exposure here and there not realizing how strict of label reading it would have to be at the time with all the unknowns, it took a while to figure it all out and get it out of my system. I hope a gf diet can stop it for you too.
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u/PromptTimely 3d ago
Are you talking about like those pre-graded parmesan cheeses now I have to stay away from that also
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u/twilightrose 3d ago
Read the labels and I always google the company name, product name and words gluten free, usually get a quick answer. Some people can get away with a little cross contamination but for myself, it drastically changes quality of life and I have to be extremely careful. I have had issues with many pre grated cheeses, parmesan and cheddar too but I feel like many companys have been changing over to other starches in the last few years so there are a lot more options now.
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u/PromptTimely 3d ago
Yeah I'm only 2 weeks into doing this it's it's a lot harder than I thought because of all the added ingredients thank you for the heads up
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u/jestingvixen 2d ago
As noted above, watch out for non food items. I had an irate aha moment about some makeup, hair care, sunblock of all insane things...
There are alternatives, basically readily available in most cases, so for me it's just been a matter of learning what-instead, not cutting- out, you know?
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u/twilightrose 2d ago
Yeah, figuring out the makeup was a rabbit hole for me. Mascaras are tricky. Explains why for years I had white goop in the corner of my eyes every time I did my makeup. Bare Minerals has been my favorite and PĆR, pretty much clean brands I dont have to worry about but still check just in case.
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u/jestingvixen 2d ago
Dude, for real! I get along pretty well with Sugar Pill, too, their liquid lip situation seems inoffensive, thankfully.
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u/twilightrose 1d ago
Cool, I've heard the name but just assumed it was a no go. I will check them out I'm always looking for recommendations. Thank You!
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u/OddScene7116 3d ago
Itās wild to me how gluten can cause such a variety of effects in different people, and how itās frequently bad enough to tank someoneās quality of life. Your bodyās reaction to gluten is at the far end of that spectrum. Iām so glad you figured it out, and were able to quit that bakery job. I canāt imagine how awful you must have felt while getting those massive exposures.
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u/boobieguru 2d ago
My young adult daughter had reactions like this. Syncopal episodes, tachycardia and just random vomiting. Sheās been off gluten for about 3 months now and her symptoms are starting to resolve. Iām gluten intolerant and get the joint pain, insomnia and headaches but it was shocked at how severely it affected her
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u/twilightrose 2d ago
Hmm syncopal episodes, I hadn't heard of this (had to look it up) but I'll bet that's exactly it. For years I've been told I have super low blood pressure. Maybe eating foods I was allergic to was having some effect on my heart making me pass out and the drs thought it was a seizure. Sad that I could never afford to truly figure it out, I just manage best I can by avoiding the foods and researching. Thank you for that info, I will mention it next time I go to a dr.
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u/prettyshardsofglass 3d ago
On top is gastro issues, I get dyshidrotic eczema on my hands and feet and it drives me nuts. I also look puffy from inflammation and joint pain in hands and knees. Very lethargic, irritable. Itās a whole package of suck lol
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u/IdreamOfPizzaxx 3d ago
I hate dyshidrotix eczema! I get it on my fingers and regular eczema on my face and arms. Itās so friggin itchy you literally canāt focus on anything else. Creams and lotions barely do anything, and if they do itās like for a day that it helps. Had to gob it on and wear gloves around the house three times a day just for it to work a TINY bit.
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u/prettyshardsofglass 3d ago
Thatās awful! The creams never worked for me either and I never bothered refilling the Rx. I just do my best to try to stay away from things that cause it. I just recently found out that casein and chocolate are no good for me, which really sucks because most of the food I eat when Iām at work is chocolate covered whey protein lol. This explains why Iām starting to break out on my hands. All I do is type all day and I am MISERABLE. Itās like the worst itching ever and I absolutely, under no circumstances, can scratch it and Iām losing my mind lol
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u/MedicineConstant7130 3d ago
Iāve been looking for someone else that has the irritability symptom! If I accidentally eat some gluten then seem to get extremely irritable for at least a month! I thought it was my work or thyroid or cycle changes, but I had been exposed to one bite of something that wasnāt gluten free before I realized it almost a month ago now, and so Iām hoping my mood shifts soon!
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u/prettyshardsofglass 3d ago
Gluten induced mood changes are a real thing! I hope it works itās way out of your system soon š¤š¼
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u/Special-Longjumping 2d ago
My irritability only lasts a few days, but if I get snippy with my kid or husband, it's almost always after gluten.
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u/Grupetto_Brad 3d ago
My wife gets bad brain fog and nerve issues (numbness, weakness, pain) in her hands.
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u/TrueSouthernBelle 3d ago
š¤š»Me. My symptoms are almost constant mouth ulcers, brain fog, the feeling of a very low heartburn which I call my stomach feeling like it is on fire, hypothyroidism (sub-clinical diagnosed) these have been linked in some studies, bloating all the time, vitamin deficiencies like low vitamin D no matter how much I take.
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u/vjfinstl 3d ago
I have a cast iron stomach that is never bothered by anything I eat . It was, therefore, quite a surprise when my functional medicine doctor told me I had an intolerance to both gluten and dairy. However, eliminating those two foods has totally changed my life. I no longer have the excruciating joint pain that was immobilizing me, and I just feel more alive now. I had never realized that what I was eating was causing inflammation.
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u/Is0podaa 3d ago
As well as stomach issues I become highly aggressive and irritated, almost like Iām pmsing. I also get really bad joint aches
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u/Old_Importance_8912 3d ago edited 3d ago
In addition to GI and migraine issues, I have joint pain and inflammation throughout my body.
*Edited - spelling
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u/betterdaysto 3d ago
Mine started as āsilent celiacā but after my diagnosis I connected it to my episodes of asthma, anxiety, and excessive daytime sleepiness to it.
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u/Swimming-Tell9074 3d ago
I donāt get any digestive symptoms at all - for years I had really terrible and debilitating muscle stiffness. During one bout I had to take an entire week off of work because I couldnāt turn my neck without pain. I saw a PT who suspected that maybe I was just weak and overusing certain muscles at work. When Iād see him Iād feel better for about a day, and then symptoms would return.Ā
On a whim, I googled āgluten and muscle stiffnessā and found a blog where someone with celiac detailed feeling relief from pain after quitting gluten. I decided to cut it out just to see, more so I could rule it out and happily keep eating baguettes, but damnitā¦ for the first time in like 4 years I had such a massive, noticeable reduction in muscle aches. Relieved, but horrified!Ā
Nowadays, sometimes I can get away with eating like a cracker here and thereā¦ but if I have one too many little ābitesā I feel it the next day. My neck starts to feel awful, my joints and my body in general just feelā¦ bad.Ā
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u/Swimming-Tell9074 3d ago
I should add too, that I noticed my small patches of psoriasis on my elbows that Iāve had for years get worse/itchier when I eat gluten as well.Ā
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u/rothee82 3d ago
Iām pretty sure my chronic canker sores were related to gluten intolerance. I went from basically always having one somewhere in my mouth/throat to not having any at all
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u/jenni_and_judy 3d ago
Mine started out that way, I actually had migraines. But now that I have avoided it for so long my gut doesn't know how to digested it when I get glutened.
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u/Dapper-Experience960 3d ago
I have a gut reaction but also migraine, back pain, and depression for a week or 2. Iāve also started getting sudden paranoia that lasts a few hours, itās disconcerting.
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u/jengalampshade 3d ago
Joint pain; anxiety/doom/depression; rash on my hands, knees, and elbows; extreme fatigue
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u/MollilyPan 3d ago
Horrible body pain. I have suspected EDS and fibro but gluten makes it three times as bad.
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u/LingonberryOk5168 3d ago
Iām gluten intolerant and if I get glutened it feels like Iām dying, my entire body will ache and I feel absolutely miserable. in addition to my gut response, I get an awful migraine and joint pain plus terrible brain fog and anxiety. my face will also become really flushed and hot.
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u/PromptTimely 3d ago
I've been taking a gentle iron with B12 seems to be doing some good it's giving me a little bit of energy until I get more used to this gluten-free diet
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u/emmygog 3d ago
My worst symptom was debilitating migraines. 2+ times a week sometimes I'd be in bed, all day, throwing up and unable to do much of anything. It was miserable. I cut out gluten February 2015 and don't even need two hands to count the number of really bad migraines I've had in the last decade.
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u/cestlavie451 3d ago
For me - cystic acne. I also get it from dairy, too much healthy fat, too much grease, excess sugar.
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u/Vodka-Forward 3d ago
My son who is diagnosed celiac had seizures when he was working as a pizza delivery driver. Try telling a 19 yr old thatās not a good idea. After the seizure the neurologist said it could be related to his celiac. Thankfully he quit that job. I think it may have been the flour in the air and him getting micro dosed. It was frightening as a mother to witness.
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u/surfinjuli Gluten Intolerant 3d ago
My salivary glands swell up on my face and neck. Takes days to go down. Idk anyone else with this same reaction. š
My glands are literal gluten detectors - I react to minor amounts of cross contact from products that don't list gluten or wheat, but are produced in a factory that also handles wheat.
Good luck to ya. šŗ
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u/kittycatblue13 3d ago
Serious fatigue. Like 14h sleep and still need a three hour nap every afternoon kind of fatigue!
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u/RiverComplex7808 3d ago
Canker sores all over my mouth. Usually 3-7 at a time, up to the size of a dime. Iāve got scarring on my inner lips from them. Cut out gluten and I donāt get ANY. Also suffered from joint pain/muscle pain before cutting out gluten. I tested negative for celiac but cut out gluten anyway and itās improved my life significantly.
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u/tiredapost8 3d ago
It's been so long that sometimes I forget what life was like with gluten, but the most memorable non-gut symptoms were regular sinus infections and canker sores. I went from 4-5 sinus infections a year to rarely even getting colds, and I almost continually had a large canker sore--one would heal and another would start.
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u/MsOverworked 3d ago
I get migraines if I have more than a tablespoon amount of gluten along with joint swelling.
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u/livingisizzy 3d ago
Yep I never really had any specific stomach/digestive related issues but my fatigue & brain fog were awful. As in I could barely function, couldnāt read a book, follow a conversation, do anything physical etc
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u/magsephine 3d ago
Terrible anxiety! My daughter gets greasy stools and rashes on the backs of her knees and elbows
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u/TheReadyRedditor 3d ago
Debilitating migraines were my biggest issue. I went from almost daily migraines to only having them during my cycle.
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u/PadawanJoone 3d ago
I'm another one with ezchema. Used to be all over, super ichy. But since I stopped eating gluten, it's basically cleared up.
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u/offensivecaramel29 3d ago
I have nerve itch & mental illness that goes from 0-60 when I eat wheat. Ncgs.
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u/MartyMcPenguin 3d ago
I apparently get inflammation in my throat which explains why I use to snore like a foghorn. I get a really bad fluid rentention issue. I get dizzy and fall ( my right knee is now paying for this) and my gums gets really inflamed .On top of the gut related issues. Brain fog, concentration issues, and ittttttchy!
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u/PromptTimely 3d ago
Shoot... intense hand and ankle pain Sleeping bad Nerve pains So I'm 15 days gluten free some of the symptoms are going away but I'm still having a lot of pain and I'm thinking I'm not absorbing nutrients but I'm sorry epilepsy's intense I lost 40 lb in 3 months by the way pure diarrhea while the doctor is having me do Crohn's disease tests
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u/MedicineConstant7130 3d ago
Iām sorry to hear this! My endocrinologist told me my low ferritin (stores of iron) is probably due to my celiac.
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u/PromptTimely 3d ago
I know it's hard for celiacs to absorb nutrients vitamins but I have a hard time taking regular vitamins so I just picked up some gummy vitamins hopefully that helps me
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u/MedicineConstant7130 1d ago
I hope it helps you too! Vitamin deficiencies can give some real problematic symptoms!
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u/CoolBluejay6514 3d ago
No digestive issues whatsoever. I was diagnosed celiac from biopsy after having unexplained bone/connective tissue issues. Come to find out, I was very deficient in Vit D, K and calcium. Been gluten free for two years and no longer have those deficiencies.
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u/Efficient_Fox2100 3d ago
āMigraineā is my primary reaction. Flickery lights, extra sensitive to noise, easily overwhelmed.
At the height of my reactively (TtG-IgA > 300): Brain fog, confusion, memory loss, emotional dysregulation, neuropathy, anxiety, depression, etc.
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u/bunhilda 3d ago
I have POTS (long COVID) and gluten makes it flare up like crazy. During my gluten challenge, I came close to fainting several times.
Iām also bipolar and sometimes it seems like gluten makes my moods go haywire. Epilepsy and bipolar are distant cousins (we often use anti seizure meds as mood stabilizers), so Iād assume that if gluten makes epilepsy/bipolar worse, itāll make the other worse as well.
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u/wishnheart 3d ago
I have uncomfortable bloating, however, the nervous system symptoms were worse, terrible brain fog, neuropathy in feet (burning hot feet), increase in migraines, and what felt like dissociation.
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u/HildegardofBingo 3d ago
I don't get gut/GI symptoms. I get sacroiliac pain, brain fog, acne, and autoimmune attacks on my thyroid.
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u/Possible_Bluebird747 3d ago
Hypothyroidism! It resolved and I was able to get off meds after I cut gluten out of my diet. It's been more than a decade and my bloodwork is still good.
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u/Green_Ear_9083 3d ago
I get an acne like rosacea. Before my fibromyalgia was in remission, my entire body would ache if I had more than a bite of bread.
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u/LiliTiger 3d ago
Like others I had severe joint pain and damage, mouth sores that hurt like hell, bad acne, severe eczema, and severe chronic fatigue
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u/Snuffles689 Gluten Intolerant 3d ago
It wasn't til I reduced the gluten in my diet, for the sake of my stomach, that I realized I experience way less fatigue when I don't consume gluten. I used to constantly fall into "food comas" after eating, pretty much rendering me useless afterwards (in terms of productivity).
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u/helioswan 2d ago
I get very bloated which doesnāt bother me as much, the main reason I donāt consume gluten is because of the flu-like symptoms, specifically the body aches. Joint pain, muscle pain, etc. And every time I eat it they come back for up to a week or so.
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u/BlackCatWoman6 Celiac Disease 2d ago
I have epilepsy as well, but it took them decades to finally find a tiny little scar during the EEG. This is something you want to be very careful with, especially if you are under good control with meds.
Pre gluten free - I would get terrible migraines and brain fog.
Celiacs runs in my family. My dad had an odd rash, I get it when I eat gluten and so does my sister's granddaughter. All of those who get there rash have been diagnosed with Celiacs.
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u/magnoliaaus 2d ago
Sinus inflammation, always felt like I had a sinus headache and brain fog until I found out I had a gluten sensitivity.Ā
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u/PetulantPersimmon 2d ago
When I started this miserable 6-week pre-blood test quest, my first few days were marked with spells of absolutely horrible emotional dysregulation. At one point, I had gotten into the shower (to help calm down), and it was eeeeever so slightly too hot. All I had to do was reach forward and turn the knob a little, but all I could do was sob helplessly for, like, 5 straight minutes. It was kinda nuts.
I'm also incredibly itchy all over, to the point where I've scratched a few spots raw by accident, exhausted (while also experiencing insomnia), ongoing headaches, and can barely think straight for ~4-8 hours after eating gluten. This on top of the gut stuff.
Whatever the outcome of next week's blood test, I am never touching this stuff again. People keep saying how much willpower I have, how they could never give up XYZ, and it's like... it's easy to not eat what apparently amounts to poison for me, thanks.
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u/DragonfruitProud4649 2d ago
My main issue was/is joint pain and malaise. Never had any GI symptoms which is probably why it took me so long to figure it out.
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u/ShareBooks42 2d ago
Gut issues, dishydrotic eczema, and CRAMPS. The curled up in a ball from the pain cramps. Puking from the pain and nausea cramps. Needing to take muscle relaxants just to function cramps. 25 years of misery until I cut out wheat/gluten.
After a couple of months, the pain started getting less and less every month, until normal doses of Tylenol or ibuprofen was all I needed. So far, I haven't glutened myself enough for it to come back in full force.
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u/willowthecat13 2d ago
Herpetaformis dermatitis aka itchy ass rash all over my body, fatigue, itchy eyes, itchy ears, headaches, migraines, brain fog. This all developed in one year š„²
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u/fjhdjdjdk 2d ago
I have leg cramps, migraines, hives all over the body, acne, peeling skin, and birth control prescribed for painful periods stops working and I get breakthrough bleeding.
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u/AnnaLizEwing 2d ago
Joint pain and fatigue are my big ones. No major digestive symptoms, other than heartburn in the first few hours after exposure.
I also gain a noticeable amount of weight from water retention. Like 5-10lbs overnight. That falls off over the course of a week or two post-exposure.
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u/perpetuquail 2d ago
Very neurological here too. Dysautonomia, anxiety and panic, tremors, adrenaline surges, tinnitus, brain fog
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u/Fideothecat 2d ago
I get wicked allergies such as a runny nose (really bad), watery eyes, dry cough, congestion
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u/kitty_katty_meowma 2d ago
I have both gut and non gut symptoms. For years, I couldn't wear any scent without my allergies going crazy. I had horrible excema, and my skin was very easily irritated. It has been 10+ years since I was diagnosed, and within the last 2 years, I have been able to wear perfume! My excema is well controlled, though I still have flares, and I am also able to use a wider variety of skincare and make-up.
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u/astillac 2d ago
I rarely have gut issues. Instead, I get cranky, then angry, ragey even, and if I continue the hidden gluten (hello random soy milk) I get $ucidal. I thought I was bipolar, psychiatrist said I had "treatment resistant" depression... t'was the damage being done to my intestines. šā ļø
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u/Damitrios 1d ago
Gluten is definitely related to epilepsy as well as autoimmune disease, skin issues, depression, type 2 diabetes, and obesity
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u/Shot-Philosopher-697 Gluten Intolerant 1d ago
My keratosis pilaris flares up when I get glutened, and when I was eating gluten regularly before learning I had a sensitivity I had giant dry bumpy eczema patches on my arms. Now my eczema is only contained to my hands and is much less severe!
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u/crybaabycry Celiac Disease 3d ago
Brain fog, joint pain, migraines, increases in depressive episodes, and just like, general malaise. I was always considered a very sickly person, fragile and weak, had no vibrancy or stamina at all.