Last Wednesday, Mrs. Dude walked into my home office, took one look at me and said “You’re struggling, aren’t you?”
And so began the latest episode of “Dr. Jekyll and Mr. Gluten Douche”.
The day before, I had just written a glowing post about my awesome gluten-free weekend in New York City.
Indeed, it was awesome. Gluten-free? Perhaps not.
I’m unfortunate in that there is at least a two-day delay after I get glutened. So for the most part, it’s a complete guessing game, which totally sucks.
But the symptoms are crystal clear.
The biggest symptom? I’m agitated. In more succinct terms, I become an a**hole.
I used to lash out at my kids and Mrs. Dude….a lot. I’ve learned over the years to try to keep my distance from them while I’m feeling this way. Working from home, it’s not always possible so I tell them in advance that the next few days may be ugly and I apologize in advance.
Other symptoms of being glutened for me?
– I feel chemically “off”. I use that term all the time and it’s the only way I can describe it. If you’ve been there, you know what I mean.
– I’m tired. Real, real tired.
– I have a hard time making simple decisions. I spent about 10 minutes the other day at Ace Hardware trying to decide between two weed killers. In case you’re wondering, I went with the one that kills weeds.
– Focusing at the task at hand becomes a real battle.
– I feel perpetually hungover (without the fun part of drinking).
– Ironically, my digestive issues aren’t that bad. Go figure.
After two days of alienating everyone in my life, I woke up Friday morning and Mrs. Dude said “You’re back!” She could tell right away that the worst of it had passed.
And she was right. Of course, she’s always right, but that’s besides the point.
Now here I am four days later and I feel…okay. It’s still lingering and I can only assume it will for some time. I hate having celiac disease.
So that’s my story.
What happens to YOU when you get glutened?
Well, I’m just so sorry to hear that in spite of everything, you got zapped. Your New York adventure sounded like a great time and you did it up with gusto AND YOU WILL AGAIN.
I find that a huge downside of being glutened, aside from the s***storm that ensues, is the residual fear and loathing of ANY straying from the “known”. It’s a tight rope walk, GD and some times, it’s finding yourself clutching on by your pinky fingernails but you rest and recoup and it’s on to the next adventure, right.
P.S. I TOTALLY get the complete inability to make decisions. I mentioned before what I call my “walking roadkill” days – it’s akin to girding your loins for battle just to mail a parcel…..sigh
This will not stop me from any adventure…but I may just eat it for awhile.
Hopefully, just “getting over” being glutened. I get extreme exhaustion. I will sleep for 28 hours without getting up. Get up for 1/2 hour, and then sleep another whole day. Scared the crap out of my son…he thought I was dead. I feel like I have no blood in my body. My bones feel like they are made of lead and noodles at the same time. It feels like weight is pushing down on my shoulders. I also get the “Big D”, brain fog and depression. I tell my co-workers that I feel like I am the living-dead, but I’m not living. It sucks!
ahhh GD-
I’m with you. It sucks. That doesn’t even descibe it. It’s more like ohmyfreakinggodamigoingtodie. auggggggggggh!!!! I got glutened two weeks ago which in itself is horrible, however just to spice things up for the day I also had two enforcement cases to go to in Northern NJ with three coworkers. I knew as soon as i got up that i had been glutened, my much better half knew it right away as i usually curl up in a ball in fetus position waiting for the intial pain to go away. Let’s just say that i made it through the day (barely) albeit in a PMSey state. I managed not to have to eject myself onto 287N.
xoxo-
Jersey Girl
“you got to live with what you can’t rise above ”
“Tunnel Of Love”
“Then the lights go out and it’s just the three of us
You me and all that stuff were so scared of…”
Did it make your body ache after you for glutened?
Hi Sam,
I have a muscle disease and CD, and if I eat gluten it hurts. I stopped eating processed food most of the time as it seems i get g’d by the smallest amount. I wonder if your muscles are simply not getting enough protein and other nutrients. Malnutrition is painful!!
Best to you.
I have three types of symptoms: inflammatory, digestive, and neurological. When I’ve been glutened my body will ache for days and my hips and shoulder are irritated. Those are the mildest symptoms.
Digestively, if mildly glutened, I have a whopping bout of IBS-like problems for about a day. BUT… if I get either barley or eat food that doesn’t come from a dedicated fryer, I will get dropped in my tracks within 45 minutes in excruciating pain. As my friend Holly puts it, “You have a very angry body.”
But the most debilitating symptoms are the neurological ones. Can. Not. CONCENTRATE!!!!! (which is bad since I’m writing a dissertation). I used to hear auditory hallucinations when glutened. Blind rages. So when you say, “Instant @$$hole, add gluten,” I get that. And my husband would agree.
“You have a very angry body.”
I think most celiacs can attest to that…and then some.
So before I finally got diagnosed I hurled my sons cell phone across the house…and for some reason had started screaming like an idiot. If you knew me you’d know something wasn’t right…I just don’t scream as a matter of fact I am so mild if I so much as raised my voice to my son he freaked out, so I completely understand the personality change..instant b@#ch!! Sometimes I’ll know I’ve been glutened because (weirdly) I get shaky like I just had 5 espressos all at once…then I won’t sleep well. And the next day well the usual 10 visits to the closet restroom and by 1 I’m ready to go back to bed…..I wish more people understood that the effects of gluten are so much more than IBS symptom…..
YES! ESPRESSO TREMORS! I have never known anyone to have them, I sure do! Along with every other possible symptom.
I get this exact same thing and then I feel exhausted and anxious for the next two weeks.
I get the shaky thing too! I didn’t know any one else did. The weird thing is I’ve been gluten free for years and I had a protein powder with wheat grass and barley grass in it (by Amazing Grass I think); every other ingredient I have been having. Also the reaction did not take very long to begin. My sight got wavy blurry like looking through a fish tank too. I am hoping hoping, hoping, hoping that the rest of my symptoms don’t show up (can’t think or remember, can’t handle ANY kind of stress, can’t control emotions, muscle and joint pain, muscle cramps and weakness, general fatigue, that ‘just got run over by a truck’ feeling, ridiculous fears, apathy.
I get the shaky thing too! I didn’t know any one else did. The weird thing is I’ve been gluten free for years and I had a protein powder with wheat grass and barley grass in it (by Amazing Grass I think); every other ingredient I have been having. Also the reaction did not take very long to begin. My sight got wavy blurry like looking through a fish tank too. I am hoping hoping, hoping, hoping that the rest of my symptoms don’t show up (can’t think or remember, can’t handle ANY kind of stress, can’t control emotions, muscle and joint pain, muscle cramps and weakness, general fatigue, that ‘just got run over by a truck’ feeling, ridiculous fears, apathy.
Does anybody get intense itching in the forearms? like someone lit a match there?
Yes! My hands used to be the worst breakout point but now my forearms turn into nasty, hived, prickly hot mess. Having a bad breakout at the mo. Forearms and upper chest is the worst but I can feel it spreading up my neck and onto my back. Have had to pull out the big guns and go back on prednisone to try to get rid of it as am starting to feel very run down and all the other lovely symptoms my body starts to develop with a bad out break.
I get itching on my knuckles
There is a skin disorder associated with Celiac. It’s called dermatitis herpetaformus(?). I got diagnosed ezcema and psoriasis before getting the diagnosis that led me to being diagnosed with Celiac.
I do not itch on the forearms, but my chins do. I get these sores all over my body too that itch like nobodies business that the doctor burns on off regularly.
Shins, not chins. I only have one chin :))
Insist on getting odd sores biopsied. I finally had enough and insisted that the doc biopsy one of them instead of burning them off. It came back suggesting another autoimmune disease; polymyositis. Not that anyone will do anything for it except steroids, but it sure helped me to understand why the GF diet was not completely working. Sure it helped with everything digestive, but the pain I was having made no sense until i saw this biopsy result.
This very reason is why I am here right now. I went “gf” about 2.5 months ago. About 3 weeks ago I started AIP (mostly) as I was still just feeling depleted. I have to say I have been feeling pretty amazing since (as I adjusted for what I felt to be adrenal fatigue). Well, just like GD, I had a weekend out and 2 days later I had what felt like frozen shoulder. That’s when I realized, the accompanying red bumps on my chest & abdomen were not just a coincidence. Nor was my inability to use words and agitation. The intense itching & insomnia now 3 days in have me googling for relief!!!! It might only come in the form of knowing I’m not alone. It has definitely helped to keep a good diary (never ever thought I’d do that).
Hi Elaine,
2 1/2 months is still very new. That first 4 to 6 months is a huge adjustment period~~many tears of desperation, frustrations, and anger. I am 7 months into it now, things are much more in balance. Things digestive are nearly perfect. Sleep is still an issue, if you can, get out and do gentle exercise (a daily walk,very light yoga (trauma yoga if you have it in your area), it helps with sleep, energy, emotional balance, and if you have a support group in your area, go to it if possible. I’ve read it takes about 2 to 5 years for things to become prefect in the gut, mine took 6 months. But if I get a tiny bit of gluten or sugar, my whole body feels like it will collapse (pain and weakness). If things do not get better, there could be other issues going on.
I had one of the sores on my hand biopsied and it indicated Polymyositis derma . . ., another autoimmune disease. It could be there is more going on then just celiacs or gluten intolerance, Stick with eating real food, try not to eat anything processed at least till things have normalized. You will get better. hang in there, you are NOT alone by any means. We all feel for you here.
I was dx with DH about 5 yrs ago. In that time I have been itch free for almost 3 weeks.
I take Dapsone 100mg to 300mg everyday. My Dr lets me tweak the dose. I have been on GF diet for 5 yrs. On a daily basis I take 200mg or more of benadryl along with zyrtec & alleges every day. I have learned toilet paper has gluten or certain brands. Anything with Vit E, Carmel coloing, tooth pastes etc. I can tell if I have been glutened within 1 hr.
I accidentally glutened my self with Doublemint gum. They list it GF but with a lot of hunting I found they use wheat in their glucose syrup.
Funny thing is I am a nurse with 29 yrs exp & never heard of DH.
I wish you the best.
i called benadryl company two weeks ago, they told me they could not say their product was gluten free.
Foggy Brain, Aches in all of my Joints, exhaustion…
I get extremely frustrated, grouchy from time to time and depressed. I honestly doubt all aspects of my life. This usually starts on day 2 or 3 and lasts a few days.
Fun stuff Ken 😉
Ken, that’s exactly what happens to me.. The only thing, my testing came out negative for celiac.. So on top of all the fatigue and depression I feel a little crazy because they keep telling me I don’t have celiac.. Maybe gluten sensitivity,
but not celiac. The whole thing makes me feel a little nuts…
I’ve not been diagnosed either, but I try not to worry about it, because following a gluten (and now dairy and rice) free diet made me feel better to the degree that I felt hopeful. Unfortunately, after initial success, I’ve been trying to track down the source of my lesser symptoms for the last year. They are usually: live in the bathroom for one day, three days of hip and shoulder joint pain; itchy, oozing ear canals, so bad I lose hearing; brain fog, body odor, weakness and depression; itchy hives on my chest, a feeling of having something in my throat, and sometimes neuropathy. This goes on in a loop so that I only have a couple of good days at a time. The worst is feeling no interest in writing or even reading, something I liked to do even when I was deeply depressed for many years. When the fog lifts, I suddenly want to do everything, but then I a) eat out, b) eat something new, or c) who knows, and it’s back to Graytown.
If you had a blood test it may have given you a false negative. The only way to be absolutely certain is by way of endoscopy.
Hi Sarah, I finally see someone else with a negative test! Are you referring to the blood test for celiac? I also have had multiple negative blood tests for celiac but my endoscopy showed flattening of the villi and inflammation, which is a classic celiac diagnosis. They say less than 2% of celiacs have negative blood tests which makes me wonder if they’re missing something other than celiac.
I’ve been through every test known to man and the only things that were positive were lactose intolerance and Small Intestinal Bacterial Overgrowth (SIBO), which they say both develop typically from having celiac and consuming gluten. It’s exhausting to do research daily trying to figure out what the doctors seem so unsure of. I started thinking maybe the SIBO was the cause of my problems so I recently finished my second bout of antibiotics and I’m not as bloated but still literally pass out watching tv with my head hanging and have lost way too much weight. It is depressing but don’t give up. You have to do your own research because the doctors don’t take the time to figure out the difficult cases.
Wow..sounds so much like what I go through. My digestive symptoms are the mild part of it..occasionally it will result in cramping, bloating and an unpleasant bathroom visit..but that’s nothing compared to the rest of it. Intense brain fog, absolutely can’t focus, think straight, think normal. I’m terrified of driving when this hits..its so scary! I know what you mean by being ‘chemically off’..I’ve tried to describe this to doctors, family members, friends..they all just look at me perplexed. I get intensely tired..physically and mentally. Agitated, short tempered, impatient and extremely depressed. It always feels like someone dumped a crap load of nasty drugs into my system and it just overwhelms me physically and mentally. Sometimes I get dizziness as well..whee :/. It sucks being around me and it sucks being in my own head when it all happens. I’m blessed to have a boyfriend who believes me when I tell him how I feel..he’s seen the dramatic difference between me on gluten and off..so he knows I’m not just making stuff up. And he often picks up on a possible glutening before I do..he’s learned the symptoms well and we know its just better if I go curl up somewhere or go do something on my own and spare him!
I was never diagnosed with celiac..I had gone gluten free months before I realized you needed to be eating it to be properly tested. Wishing I had been tested..but honestly, don’t ever want to eat the stuff again. My symptoms are too intense. For a long time I just thought I was gluten intolerant…but I’ve noticed my symptoms are so similar to many with celiac that is made me think it may be what I’m dealing with as well.
Wow you described how i get almost too a T. Ive never been diagnosed and my family and friends called me crazy when i told them i feel weird when i eat bread, (mind numbing brain fog is the absolute worst side effect, almost crippling). I just was glutened and felt horrible all week! Anyway take care!
You respond exactly how i am feeling. I was recently diagnosed with possible celiacs, but have not had the endoscopy. I’m trying to figure out what is gluten free, but there is sooooooo much to learn. Does the way you are feeling after being exposed to gluten, come on very suddenly? It does for me, but I haven’t figured it out yet. The dizziness is what I am feeling right now, and why I googled the question. I haven been thinking I need to see an ENT to rule out issues with my ears.
Your symptoms match mine exactly. I wonder what causes this to occur. I went through grade, middle, and most of high school before I began to notice that something was off (I didn’t have my gluten sensitivity before high school). I’d get the bloating, mind-numbing sensation, lack of focus, and intense brain fog. My doctor told me to start some elimination diets and after a couple months of varying diet type, eliminating bread made me feel better. Occasionally, I test myself. I’ve found that I don’t respond to trace amounts of gluten like 20ppb, but anything more than about 1/16th (I tested this haha) of a slice of bread will give me some intense brain fog. I keep thinking that maybe its just realllly intense placebo effect…. But its refreshing to know that there are other people with a similar problem.
I just wanted to say thank you for sharing your struggles. My six year old has celiac and it was not until reading about your symptoms that I truly understood what he is going through. LIke you his digestive symptoms are not extreme like some peoples but the psychological symptoms are far worse.
If I had not read your post I would of just thought he was being naughty and probably would of gotten angry at him. It is such a frustrating disease and I really appreciate you sharing your story with us every week.
Thank you…
This is why I wish more people would realize ADD, depression, even Bi-polar and other mental disorders probably have to do with gluten issues.
I am much like you. Sometimes I have some pretty horrific stomach and digestive problems, but I believe it mostly affects my mood. I get so fatigued for weeks….and not just, “awww I’m sleepy” but I feel like I am literally on my death bed type of tired, the headaches are awful, I get stiff, sore, puffy, broke out like a teenager, but my mood has to be the worst part of it. I become angry, I feel like the tension of my anger is squeezing my chest, my poor kids…. for them, I feel the worst. I hate having Celiac so much and it affects me on a very emotional level daily, but more than I hate it for myself, I hate it for my kids even more. They have had to live with a roller coaster of horrible moodsfrom me their entire lives. I feel awful they had to deal with such horrible parts of it before I was diagnosed, but still it affects me so frequently. I wish for their sake that I didn’t have this stupid disease.
Amber…I began taking a prescription drug…very, very light dose, to calm me down a bit. And I’m as anti-medication as they come. But I don’t explode like I used to anymore. Just something to think about.
In hopes that this will help someone else, yes, major fatigue, headache, but I have/had a weird one – a bleeding cyst. When I went wheat free a long time ago it went away. If I get glutened now it swells up. Not sure I’m truly celiac, but very sensitive nonetheless.
Brain fog – big time. Inability to make decisions – check. Irritability – there with you. Days of such complete and overwhelming exhaustion – no amount of sleep can finish it off. Lately I have been wondering about these symptoms and the possibility of the ‘hidden’ symptoms. I am almost grateful for the light headaches that might appear as they let me know immediately that I have had contact. At least at those times I can prepare before I become a pain in the lives of everyone I love.
Mine is all neurological. My neck and shoulders feel like they have 500 lbs. loaded on them. My spine and hips feel like I’m wired to 220 – I just buzz. Sometimes I’m a bit dizzy as well.
Brain fog, and within two hours, I get horrible intestinal pain and digestive symptoms. I get cranky and moody, akin to PMS. After these fade, I get an ugly rash on my chest and neck that can last for weeks.
I get ornery and depressed. When I manage to quiet my mind, I notice my digestion is off. Tired and run down, but not sleepy. Crabby with stomach troubles and insomnia. Sometimes it lasts quite a long time. 🙁 I can’t really put any set time on how long it takes to get better. Every time is different.
Foggy vision, exhaustion, shivering, pain in the joints, feverish, dermatitis, constipation, really painful periods, swelling… basically I feel the pain of the “English Patient” after the crash, I think I look like a female version of a stabbed Dorian Grey, and people tell me that I am in the mood of an unhappy Godzilla.
I usually start not enjoying my meal 10 minutes into it and feeling like I don’t want to eat anymore even if I started out liking it. Then I get to go to the bathroom and hang out in there for awhile. Then later I get to do that again. I get dumber or slow and can’t express myself well. If I really get hammered I get so lethargic I can barely do the grocery shopping or whatever I’m doing and I’ll even get like drunk style vision. My shoulders will also get achey. Then for the next 3-5 days I get to wish I could go to the bathroom and feel like crud. I don’t have confirmed celiac disease but I do know for about 5 years I’ve felt terrible after eating almost anything “out” and as you all know almost anything out includes gluten. I quit with grains all together 01/07/13 and never want to look back, I feel so much better than I have for years or maybe forever.
Confusion, lethargy, crazy mood swings, bloating, breathing problems, itchy, crazy mood swings, IBS symptoms, exhaustion. I don’t know I can be lethargic and a raving maniac at the same time, but I manage. After the worst of it has passed, then I am exhausted and can barely stay awake, but I can’t sleep either. It’s a total Catch 22.
And I always thought I was just a bitch! Who knew I was being glutened and the side effects were so drastic. Before being diagnosed I would wake up angry, spend the day angry, go to bed angry…a pure joy to be around. Then add in the depression, migraines, vertigo, puking sessions and sleeping every chance I got – yep pure joy. Once I napped in a fitting room for an hour because I could not keep my eyes open long enough to drive home. I bought the outfit I fell asleep in 🙂 it’s always nice to know you’re not alone.
“I bought the outfit I fell asleep in”
Sorry…had to laugh at that one.
Well unlike the rest of you I really only have a before gluten/grains and after gluten/grains which I stopped 8 months ago. These symptoms have vanished when I stopped eating it:
PMS, fibrocystic breasts, painful period, trigeminal neuralgia, sinus infections, ear infections, dental infections, SAD, hayfever, pins and needles all over, tingling and numbness in hands and feet, poor circulation, anxiety, panic disoider, insomnia, palpitations, heart arrhythmia, light sensitivity, noise sensitivity, chemical sensitivity,shivering, IBS, cramps, bloating, fuzzy vision, dizzy spells, adrenal fatigue, brain fog, OCD, concentration problems, anger outburst, forgetting all sorts of stuff all the time.
I,was reading,these articles and Im
AFRAID Im having these sys-toms. I JUST LOST 30 LBS on the primal diet and if I cheat with any bread, pasta.I pay for it with misery. I thought maybe the body just got use to no sugar and carbs and rebels. what test do I ask my doc to test me on my tolerance of gluten… THANKYOU ALL FOR SHARING. mrs D
I can identify with most of you. My symptoms are exactly three hours after ingesting (makes it easy to identify the culprit) the tiniest bit of gluten. The toilet and I become quite intimate over the next three hours (do you see a theme here with numbers?). Eventually we do break up but remain good friends over the next three weeks. My other symptoms are brain fog, arthritis, and migraines. Yes, I am so much fun to be with, NOT!
I AM just getting used to recognizing the symptoms. I am also having a lot of residual anxiety related to remembering a lot of times when I was glutened and just felt plain guilty, not knowing why I was behaving that way. I am a nurse, so I have learned to channel some of the energy toward being compassionate towards others, but ultimately you must always take care of yourself. Loving-kindness meditations help me (aka metta meditation). A little bit of Yoga also goes a very long way. It will always be a challenge, but the majority of relationships I have been in have been very unhealthy because I was not aware that was going on. Here is to letting go of the past.
I am currently coming off of a ‘gluten’, and the indecision and brain fog is apparent, as I have been sitting at the computer for some time trying to decide what to write. I’m surprised I haven’t just posted my grocery list. 🙂 And aside from the brain fog, after being glutened I also enjoy rollercoaster emotions, panic, anxiety, extra bathroom time, bloating, fatigue, a rash, and usually one day of being freezing cold.
Rachel, my body temp also goes really low and I am freezing. I hadn’t really associated that with a “glutening”.
I completely forgot about being cold! Before I found out about celiac, my whole life I’ve had a lower than normal temperature and was always freezing! No one could tell me why, but even in the summer I would wear sleeves in the house.
When I get glutened, I too have a day or two of freezing cold. Hadn’t put them together before.
Low body temperature is normally caused by problems with your thyroid. Could be caused by the gluten inflammation reaction or you might want to check for Hashimoto’s (which tends happen more often in people with celiac’s). Might be worth your while to have it checked.
Gluten Dude – These are my EXACT reactions, though I don’t have the 2 day lead time and I get the added fun of a migraine. I’ve never been diagnosed as celiac.
When I’ve had obvious gluten like a bite of bread it’s an instant pain in my stomach and constant severe acid reflux, thankfully I have figured that out and avoid gluten at all costs. But I have been accidentally glutened from who knows what and about 3 hours after I eat it I get severe acid reflux that will last all day. Usually I feel pretty tired as well and before I was diagnosed I had pain and swelling in my knees for 2 years. The knee pain seems to be under control now, thankfully.
Hi GlutenDude,
thanks hugely for this website – am similar to many on the forum – gut reaction within 4 hours (depending on what flavour of cross-contamination this can be vomiting, diarrhoea, or constipation with bloating), most of me puffs up like a balloon, exhaustion, depression, brainfog, plus a crazy heart rate, massive aches and pains (which last for weeks and get worse around the three week mark). After each of my last three glutenings it has taken a month before I can exercise. I’m gradually learning to “listen to my body” and just rest up like crazy.
Gotta love the gluten!
Does anyone have any ideas for how to speed up recovery after gluten?
Some great advice here Lou:
http://glutendude.com/celiac/help-i-have-two-days-to-heal/
Superb! I’ve tried some of these tricks in the past, but not all, so will give some a whirl next time the dreaded cross-contamination hits.
Many thanks.
I generally describe my reaction to gluten as the worst 2 day hangover you’ll ever have….spent in the bathroom. Without getting to experience the fun night before.
My symptoms start anywhere from about 3-10 hours after ingestion of gluten… The first symptom is usually my stomach will cramp and that means I need to get to a bathroom. now. This same thing happens up to 10 times throughout that whole first day, followed by a few days of constipation. Another one of the first symptoms is vomiting. I don’t always vomit when I’ve been glutened, but sometimes I will be in so much discomfort that it will wake me out of a deep sleep and then I will vomit a few times. This is always followed by a migraine, sometimes that will last for up to 3 days. I also experience an increased, insatiable appetite (I’m assuming due to the lack of absorption of nutrients?). In addition, I will develop large, dark circles under my eyes. I sometimes will have an itchy rash on my neck, although not always (I was told this is due to the fact that I have gluten intolerance and NOT celiac, as the DH test came back negative). I become extremely tired, and could sleep all day, although I will usually have a bit of insomnia at night. As for neurological symptoms: brain fog is a major one. I just feel like I’m in a daze. My mind doesn’t seem as sharp as usual, I will find that I make silly mistakes on homework or taking notes, or even in my speech (unable to just “spit it out” or think of the word I am trying to say). My indecisiveness increases tenfold. I find it difficult to concentrate. I experience ataxia- I will run into the sides of doorways, or into coffee tables, or be unable to walk a totally straight line. I relate to the “chemically off” feeling- I just don’t feel myself. Give me a day or two though, and I’m back to normal. Frustrating though, because usually when I tell friends (classmates or college friends of mine) about how I feel, they write it off as if I’m hungover- even if I hadn’t been drinking. Oh the never ending joys of gluten intolerance!
I forgot to mention acid reflux… I never have it other than when I’m glutened. I also forgot to mention the belly bloat- makes me look almost as bad as I feel!
My symptoms are horrible gut pain, moaning and groaning while on the toilet with explosive diarrhea. It hurts so bad I break out in a sweat. I get so bloated I look 6 months pregnant. Plus fatigue, my heart goes bonkers and I am just plain out of it. Recently, while traveling, I stayed at my brother’s beach house in Stone Harbor, NJ. He loves his beer and beer glasses. He does not wash the glasses with soap and water. He just rinses them in hot water, lets them dry and puts them back into the freezer. He thinks the soap will affect the taste of the beer. I did not think about this effecting me. I put some Angry Orchard hard cider in these glasses. Bam, I was on the toilet moaning and groaning for 2 days. I was racking my brain trying to figure out how I got glutened b/c I was making my own meals. I even bought new cutting boards. Then I had an A-HA moment. It was the beer glasses!
Your wicked-fast turnaround makes me wonder if it is something else besides gluten??. I know you know what a gluten hit feels like, and I do not doubt your symptoms at all, but I just want you to consider the following. Just hear me out, my friend. 🙂 .
I’d like you to consider that you ate in all places carefully vetted by other celiacs, right? Maybe, just maybe the fact that you ate a whole bunch of things you have not been eating for a very long time may have given you some symptoms? (rice flours, other grains, dairy–these are all used in baked goods)
Plus, you drank more alcohol than usual, right? celebrating and all? 🙂
I only suggest this because when I have too many high histamine foods and extra starchy carbs (alcohol, shellfish, tomatoes, GF breads and treats, etc ), I have what feels like “grouchy pants central”
and I know I have saturated my body with “too much”.
I also felt like this for two days after I had to have a tetanus vaccine for the chipmunk bite I got last week. And after the antibiotics for the tick bite the week before. (I know, I know–I am like a wildlife Lucy Ricardo, what can I say?) 🙂
.
What I am trying to say is….your body is uber-clean!!
OTHER foods and beverages and substances (did you get any meds
for your procedure, for example?) can cause reactions that are almost identical to a glutening.
If it were gluten, I am pretty sure you’d have had gut stuff–because it has to disrupt your bowels in some way. If you always had gut issues from gluten before DX, you would likely still have them when hit.
Just my opinion, I could be absolutely wrong. 🙂 and I probably am, but I just wanted to raise the idea.
Your post about NYC inspired so many new people to see that dining out and traveling can be done successfully and I hope they will see that they still can. Unfortunately,this is our life—sometimes we get bitten by ticks, chipmunks, and yes, some sneaky gluten. It does not mean I am canceling my future trips anywhere (but I am watching my contact with wildlife from now on)…LOL.
It’s totally possible and if it was just the tiredness, I’d say more than likely. But that whole chemical thing where I am so not myself…I don’t know. And a week later, it’s still lingering.
But honestly, who the heck knows.
And I will go back to the city in a heartbeat.
It sure beats being in the wild with rabid animals 😉
Hi GD,
Been diagnosed since 2007. I totally understand when you say your feeling “off”, having “brain fog”, and being indecisive. I notice it big time at work when trying to be productive. Just can’t concentrate. Probably my least favorite symptoms.
I’ve been GF for a while and am really careful, so even the slightest contamination gets me. I think I just came off being glutened, but didn’t seem to have any of the digestive symptoms this time. In my brain daze it always takes me a couple days to realize I’ve been glutened. I also developed a rash in a few places (wrist, arm, stomach, toes) that I thought was poison ivy. Now that I’m feeling better, it looks and feels a lot like Dermatitis Herpetiformis that I get.
I hade two family friends that have CD and I wanted to mention that they have hardly any digestive symptoms. They often say this can be a bad thing since they might not be as careful or might not realize they are being glutened!
Thanks for all your posts. It’s comforting to hear from other people that understand the struggles of Celiac Disease.
-B
i am diagnosed coeliac (tested, biopsed etc) i have had very rarely any stomach symptoms (even when eating gluten diet and im talking pasta pasta pasta) my symptoms began with headaches, swollen hands feet, tiredness, brain fog, cramping, twitches, numbness, pins needles, headaches, backpain, neckpain…
even now when i am exposed to traces of gluten i very rarely feel anything in my stomach. a slight pain now and then.
i now have acute reactions to gluten – dermatitis, swollen fingers (think hulk) and minimal executive functioning, prefrontal cortex functioning and my brain seems to disconnect so that i take 2 hours to do something that took 20 mins prior….
symptoms come 3-24 hours after so i can rarely trace it back (gluten free diet 100% but every now and then i trust a resteraunt when they say gluten free). so i dont think the absence of intestinal symptoms means anything.
That said i am praying for and believing for healing
given that i have been healed of diagnosed junior rhuematoid athritis (after 2 years suffering) i have high hopes 🙂
To answer your question though 🙂
Horrid abdominal pain…like I may pass out…happens in waves…. for hours (last time was only 24 hours)…then the inevitable big D…with nausea, loss of appetite, feverish feeling
insomnia, jittery
hair loss –hate that part 🙁
painful and burning joints, bones, muscles
gluten head–space cadet
a few days, later, general wiped out feeling
I have to report though, this last time? I heavy dosed with probiotics
and Pepto bismal and slapped on makeup and plowed through because I was headed for a wedding and I was driving across the Mass. Pike and I had to get it under control. It worked. I had a blast once I got there.
Shorter duration (about a week, total ) than when I was very ill, so
I figure that’s progress! 🙂
How could I forget the hair loss? AWFUL! Chunks come out in handfuls. I also have had this each time I have anesthesia and not one doctor has ever said he/she has heard of this happening.
I think our bodies are very smart and “clean” now
and they are protecting us vigorously
and that violent reaction we have from gluten (or other foreign, abrasive or chemical substances) is its way of saying:
“WTF was THAT stuff??? Are you kidding me with that?
Holy sh*t!!! ”
🙂
disclaimer: that’s my interpretation anyway. Not found in medical texts, I am sure. LOL
I have these things happen after dental work, vaccines, anesthesia,
even too much chocolate. Body says “oh no, no, no!”
haha love it!
Methinks that Irish Ricardo has way more to fear from the wildlife than any gluten hit! I say that because I heard the full story and, while I am loathe to laugh at my friends when they have suffered an injury, the story was pretty hysterical….. ; )
I also agree that the bad 2 days could have been from all that rich food. The same happens to me when I overdo it. I think our systems are so clean from all that healthy eating, we are derailed more readily than others when it comes to binge eating. I had to stop at 2 bread sticks when I went to Risotteria because they would have done me in if I ate more. They were incredible but very rich, compared to what I usually eat.
If it was a gluten hit then you did well to only suffer for 2 days…..that means you are healing! The longer you are gf, the shorter the recovery time.
Mine will depend on how much gluten I have ingested, it can vary from bloating to major stomach pain. One time I ate a bunch of corn chips at a Mexican place not even thinking about the oil they fried the things in (this was about a week after my diagnosis). I got stabbing stomach pain about 10 minutes after I finished eating. Then the next day spent time in the bathroom. Once after eating dried mango (GF) but oops processed in a factory that also processes wheat (I hate that they label stuff GF when it’s really NOT!), I woke up around midnight with stomach pain and spent the rest of the night in the bathroom. I always get super bloated and just feel “off”. I also have major brain fog and can’t think at all.
Much like what you described in your post. I am so distracted and unable to focus the last time i drove through a red light… And decided to turn around and just go home as i felt i was to dangerous to be driving. I also occasionally get blisters in my eyes and a rash on my arms and chest. My skin breaks out like I’m a teenager again and my stomach swells so much i look about 7 months preggers. I get horrible nausea (some vomiting) and intestinal issues and almost always get a blockage of sorts. It takes me about 2 weeks for things to start sorting themselves out again. So basically I’m a psychotic swollen rashy walking zombie.
“…a psychotic swollen rashy walking zombie”
Yup, me too. Like those hideous things from the movies and video games. No one really tolerates irritated psycho-zombies; the instinct is to kill with prejudice. And it’s totally justified when they’re wanting to get you first.
When explaining (away) gluten-rage to innocent victims, it’s therefore key to emphasize that thoughts of eating their brains never really get to the actionable stages. An agitated gluten-zombie need not be feared as a life-threat. It’s just something I ate, and it will pass.
it’s really interesting reading everybody’s reactions to gluten… upsetting because it’s all painful, but it’s good to have this place to share and commiserate.
of these comments I seem to be the only one with dermatitis herpetiformis/skin version of Celiacs. my main symptom is the awful burning/itching/ ripping feeling. then the bumps, dryness and rash come into play. while the specifics vary, it usually appears on my back first, although sometimes it’ll continue around my stomach, down the sides of my thighs, inner arms, and more rarely on my legs and shoulders. I accidentally got glutened by family this week… six days later the rash is only starting to dissipate.
the other symptoms I notice are more in line with the rest of you guys… definitely irritability and that “chemically off” feeling. when I know it’s coming on I tend to get really frustrated and often cry from that and the pain of the rash. depending on the reaction, I sometimes get stomach pain, cramping, etc.
the main of it is definitely the rash… because it’s so obvious people seem to be more empathetic to me though. I find that since they can see my back covered on red bumps they can understand it more than trying to explain head and stomach pain.
I get a rash too, but not immediatly, its like my body hides away the ‘glutened’ cells and then, I get a bit of a rash, or a reeeeeeeeeeeeeally itchy patch of dry skin.
I had eczema as a kid and I hated it, but my parents were able to get me on a really great gluten-free diet, and we have a pretty dedicated gluten-free kitchen (I still get accidentally glutened by well meaning friends and extended family – but I know that they are trying)
so I know sort of how you feel. getting a cool shower, or putting ice packs on my skin seems to help, and my mom makes a salve out of comfrey leaves, olive oil and beeswax that is terrific for healing up the ‘gluten bumps’ (and just about any other skin ailment 🙂
I need to try making that oil combo! I love natural remedies!
My son has the DH rash, too. He was diagnosed in December 2012 at 13 and has been GF since. He’s been doing great, but then he had a bellyache a few days ago. I did, too, and I’m not celiac that I know of, so I hoped we both had a virus. However, four days after his bellyache, his DH came back. 🙁 So, we know he was glutened, we’re just not sure how.
Monika,
Besides awful heartburn, my first and sometimes only other symptom is DH- Mine is weird because it is only on my hands and feet-which is not typical of DH, but it takes at least two weeks to clear up if I’m lucky. But gosh is it awful-and can wake me up in the middle of the night! I have been wondering if other people here have DH too- and where they have it, and if they have found anything that helps…?
My other symptoms are the usual- fatigue, brain fog, stomach cramps, constipation, bloating, but none are as bad as the heartburn and DH.
I have am gluten- intolerant and have three different reactions depending on how much gluten is in my system.
1. If I use a product with trace of gluten over a long period of time (1 week or more) I get depressed to the point that I debate taking the dog for walks (I always do-but I have to think about it).
2. If I have a larger amount (sauce that someone has dipped bread into, and I accidentally ingest a tiny amount of the bread) I start projectile vomiting immediately while insulting everyone in the vicinity and then get a migrane.
3. If I have a larger amount, I become verbally abusive, start pooping and vomiting for awhile, and then either get a migrane or sometimes fall unconscious.
Basically my body treats gluten like a large amount of alcohol, and I become a verbally abusive drunk.It is a short reaction, but frustrating as I later need to apologize to everyone and hope they understand.
Reading this site actually makes me realize how minor my reaction is and I am thankful to have a place to rant.
Please excuse the typos in the above comment.
As a child, when I was ‘glutened’ my poor body would re-act almost immediately (by becoming violently ill) but as I have gotten older, getting glutened doesn’t produce the same immediate reaction, it take about 1-2 days, and then I get a severe headache, and some awful stomach cramps – I also cannot focus, and I find my normally mild mannered self becoming a MONSTER !!! I usually try to stay in bed, away from my poor family. If I have to go to work, I take advil, and down some soothing mint tea (like every 20 minutes!!!) that seems to make me at least somewhat ‘human’
My very first symptom is hives. I have had hives without being glutened, but never have I been glutened without first developing hives.
The rest of the symptoms arrive a few hours later and are pretty much like everyone elses..joint pain, IBS symptoms, abdominal cramping, extreme brain fog, IPS (irritable personality syndrome) and awful fatigue coupled with insomnia. This lasts a minimum of two weeks.
Of all of the symptoms I hate the brain fog the most. I literally can’t think of words or how to spell them..(easy words) and I will forget where things are on my car like the windshield wipers. At work I will stare stupidly at the computer screen trying to remember how to do a task that I have done thousands of times. This is the scariest part for me.
It really does suck doesn’t it? But it is so re-assuring to hear so many other similar stories. It just so good to know that I am not just crazy. For me, in the early days, I used to throw up for about 3 days and then feel exhausted for another week or two. Now (after 3 years GF) I rarely throw up, but I do feel nauseous and as tried – stupidly tired! And the brain fog – oh hw I love the brain fog!
Thank you GF Dude for having this blog. It is good to have somehwere to feel you are understood and can share – all the way down here in NZ, there isn’t many of us around!
My brain feels physically foggy, I slur and can’t get a full sentence out of my mouth….Then I panic and think “what did I eat?” It scares me so badly that I cry.. I spent years with a deteriorating brain and I NEVER want to go back there. My mom has full blown dementia that I am sure is from Gluten Intolerance.
When I become ‘glutened,’ I become extremely fatigued. I get terrible pains in my stomach. I get chronic diarrhea at least 10x a day. I become severely dehydrated and weak. Occasionally, I get rashes. This hasn’t happened to me in a while though. The last time I became ‘glutened,’ I had extreme fatigue and pain.
I also become a serious grouch, LOL! I do have to be careful when the diarrhea happens, my potassium levels drop considerably during this time.
These symptoms have lasted as long as 3 weeks. When I was diagnosed, I was told that I tested very positive. A year later, and after being gluten free, I still showed significant damage to my small intestine. I have a few complications from the disease. One has kept me out of work for the past several months.
Ditto to almost all the other comments. But for me, the mood swings alone are becoming more and more debilitating: I turn into a complete b*tch-on-wheels. Godzilla, Louie DePalma from “Taxi,” Lucy from “Peanuts,” Michael Jackson during the first scene of thriller when he turns into the werewolf:
Girl:
Are you all right?
Michael Jackson (warped scary voice):
Go away!
. . . they all got nothin’ on me! I basically turn into the most grouchy, crabby, cantankerous, prickly pear on the planet. And I get brain fog from h*ll, not to mention a fun new manifestation involving slurred speech and a sort of linguistic dyslexia, if there’s such a thing. Case in point: the last time I got glutened, I was about to volunteer as a camera operator at my local public access TV station, and when I arrived I saw another volunteer there, appearing to be setting up in the control room. What I intended to call out to him was, “Hi, Brian, are you directing tonight?” but what came out was, “Hi, Brian, are you drinking tonight?” Well, he wasn’t drinking, but it sure sounded like I was! Of course, everyone within earshot immediately burst out laughing and stared at me with bemused expressions on their faces, and I looked and sounded like some sort of nincompoop (a drunk one at that) and had to explain to everyone that my brain wasn’t working properly as I had been “glutened,” which then made me look like even more of a boob. (There goes that Laura again with her weird excuses, hardy har har!) So yes, the neurological/cognitive effects at this point outweigh the GI ones. In closing, getting back to your original question, what happens to me is that I become a walking imbecile with a distended belly for about 4 days, give or take. O Joy, rapture! Sigh. Thank God for GD and this blog, otherwise, I’d have no one to commiserate with!
On a sidenote: I glutened myself on Sunday because I broke my rule and ate from a local barbecue buffet knowing full well there is no such thing as safe buffet food. Anyone else feel very GUILTY when this happens? It is bad enough to suffer the consequences without also feeling like I deserve them. In the meantime my joints ache so badly that I’m walking like I’m 85, I am covered in hives, have a rash, bloated belly, and am so brain-fogged I probably wouldn’t have remembered this web address if it wasn’t bookmarked.
aw Dee, do not feel guilty. Sometimes we make mistakes.
I think it is based on trust (or hope maybe), that it will be okay
if we choose inherently gluten free foods. Sometimes we let down
our guard. Hey, I got hit at a restaurant that has been safe for me
before. (could have been a new chef that day used the same pot of boiling water for my GF pasta that he used for someone’s wheat pasta–who knows?)
Try the extra probiotic doses for a few days and see if it helps?
It does the trick for me.
Hope you feel better soon ((hug)).
I have been gluten free and diagnosed for almost 10 years. And as I have been exposed less as time goes on the reactions appear to become more varied and severe, but it depends on the amount.
As a disclaimer, I am by no means reckless and am very clear with my family and moreover people I have not reason to trust like restaurants. If I determine the likelihood of them screwing up is about 80%, I opt for something that is nearly impossible to mess up like a salad with vinegar and oil, fruit, cheese, shrimp cocktail, or steam vegetables. If worst come to worst I go to a grocery store and buy stuff to have a picnic.
For trace amounts most probably from cross contamination, I get eczema in fun places like on my upper eyelids, behinds my knees, and once in a while on my chest where the neckline of my shirts touch. 2% Cortisone relieve the symptoms somewhat, but only eliminating the culprit from my diet resolves it. I’ve had more than one instance of take-out/delivery “Gluten-Free Pizza,” not living up to it’s name. I should know better. Now I have one trusted place and make pizza at home using Udi’s thin crust in 9 minutes…even with perp faster than any delivery!
For a little more than trace amount like a quarter teaspoon from a clueless or careless chef, restauranteur, or waiter; 4-8 hours (which probably depends on the amount, more = sooner) later I have debilitating cramps following shortly after by painful acidic and burning expulsion in three successive waves. Somewhere in between eating and expulsion, I also tend to get an immune reaction similar to what I get for allergic reactions where my glands swell and I get a mild fever, which I can not associate with any factor other than maybe quantity? The rash comes like clockwork in this case soon thereafter and is harder to irradiate.
In my worst reaction so far I felt battered and had a fever for two days missing work. Well…not really missing work, mainly because I couldn’t think about much beyond my symptoms.
I have noticed no mental effects, other than just being a irritable suck (totally justified) from the pain, but I am a person that is closely tuned in on my emotional, physiological, and mental state and am very good at self assessment and thinking about, “why am I feeling this way?” I’ve stopped taking certain medication when I notice odd side effects that were unusual.
I’ve had DH once, I believe from using a topical wheat product, but I am not sure, and I’d do anything to avoid that again. My doctor refused to believe me even after I showed him evidence, so I fired him. I never had a recurrence.
On what I would think is an unrelated note, when I was between 13 and 19, I used to have debilitating migraines that either felt like and ice pick poking my eyeball from inside my skull or a zipper being opened and closed from inside my head. The worst few gave me stroke like symptoms with half my body numb, mumbling speech, and flashing spots in my field of vision.
I can’t imagine where this will lead to next.
I’ve been lurking for a while, figured I’d actually contribute a comment for this one. Sorry if it’s a little TMI but I figured since we’re all celiacs here…
I’ve only been gluten free for about 6 months now, and every time I get glutened it seems to get worse and last longer. Also it appears to come in stages, and I don’t even realize it’s happening till my husband points it out and wants to know what I ate >..>
4. Day 2
Joint pain. fibromyalgia symptoms. Back hips knees hurt for no reason.
I will get a migraine. Brain fog so bad sometimes I forget simple words like Ice cream and my own husbands name!
I become short tempered and snappy. Just an angry person who hates life and wants to sleep 28hrs a day. (the only time me and my hubby come close to fighting over really stupid stuff that doesn’t make sense) This is the time I stop being in denial and admit that I ate something I shouldn’t have….
5. Day 3
Symptoms continue. I hate life, cant do my job. (thankfully I work at home as a graphic/web designer) Its no longer my stomach bothering me… its lower, my whole abdomen! (like I said i get constipated) It almost seems like I can feel it move down my gut with stabbing pains.
6. Day 4
Symptoms start to lessen. Brain fog seems to have subsided. If I haven’t gone to the bathroom by now (which means my stomach is still in knots and stabbing in spasms) I clear my day and take some special herbal tea to finally clean me out because I can’t take it anymore! (before celiac I would be constipated for more than a week at a time o.0)
7. The following week
I feel better, but still have joint pain, and slight brain fog.
Random joint pain can last for a few weeks after.
7. I’m happy, bubbly, feel great, and my husband loves me again! ^_^
(figure of speech… he never stops loving me or holding me saying it’s only a few more days you can make it)
I’m a Mrs. Dude too, and it’s really easy to tell when my husband is in gluten-douche mode. He said he realized when he got glutened once because he got angry at the microwave because the seconds were taking too long to count down.
Thankfully, that part only lasts a day, but he’s achy and grumpy for about a week and a half. He also tends to ponder the meaning of life when he’s under the influence of gluten. If he goes into turbo-philosophy mode, I know he accidentally ate something.
I had to laugh at getting mad at the microwave because the seconds weren’t counting down fast enough. I hope he realizes how lucky he is to have you, “Mrs. Dude 2”..LOL. There is nothing better than having a partner that “gets it”!
Odd I just had this talk with my husband as I was NOT strict with my diet and ate gluten on my own and shrugged it off as I took an allergy pill so all should be good (even though I know it is not and it hurts me but damnit I wanted this certain restuarants pizza………)
So like you I have a gluten delay and sometimes a delay in any food that gives me a reaction and a good reason for me to keep a food diary. But the last 2 times I have been glutened either by myself on not knowing I have become a raging Beach. Like can not even stand myself type of thing. I get like that sometimes as I am female but exercise takes care of that issue. Nothing cures the gluten anger then time for me. This like I said at the beginning is a new thing that I just discovered.
1. Run (do not stop) to the bathroom. Have horrible spasms.
2. Come out of bathroom and snap at anyone in the room.
3. Run back to bathroom, Really, really hurry. Groan with spasms.
4. Come out and yell at everyone including the dog.
5. Ignore my husband when he asks why I am such a B.
6. Rush to the toilet again. Consider wearing a dress and no undies so I don’t have to undo the pants and waste time.
Repeat for at least 7 days.
6. Try not to scratch my legs bloody during the night from the swollen, bumpy rash that runs down my shins. That lasts at least 2 weeks.
When people ask “how” I can continue to eat GF I just tell them it is so much better than the consequences. I am HAPPY to remain gluten free for the rest of my life.
Well, I came on this website to see if my symptoms I have been having were similar to others when they get glutened… sure enough. My husband bought some “natural” cookies that he mistook for “gluten free” (he gets frustrated when I ask if something is gluten free because he says he is not going to buy it unless it is, so I didn’t confirm for myself this time, hummm). Anyhow, I been Gluten Free for 2 years, and have not been glutened in a while. I did not have the severe aching and vision problems that I used to typically get, so I was thinking this was great! Not quite. A day later, the fuzzy vision started and lasted about 2 days. The next day loose G.I. problems, and that night I awoke with full gastroenteritis attack. The low frustration tolerance and anger has been present, but not been quite as bad with this round as it used to be when I would get glutened. This tells me that my body has healed a lot from what it was (I used to be almost non-functional between the G.I. problems, vision focusing problems, low energy, pain, and anger), but I’m sure if I had another cookie, that would come in full swing.
Sending healing thoughts your way…
My symptoms start immediately! YAY me~!~~Sitting in a friends home having just ingested their “gluten free” chicken nuggets! After two bites I have to excuse myself to RUN to the bathroom before I EXPLODE at the dinner table with a rather disgusting—yes, gluten fart! My husband named them so please don’t blame me. Mind you, these are not the ones that you can gently lift a cheek and let slep out because a GF just doesn’t happen that way! Now I’ve been glutened and I have quit eating anything…just sitting there. BUT…the GF’s are still roaring. I have to continuously excuse myself to go use the bathroom. That continues all night long. THEN…the joint pain starts in and the inability to eat anything else. The big D sometimes and sometimes it’s the big C. I guess it all depends on what and how much! The list can go on and on and on but I’m sure you’ve all been there and know exactly what I’m talking about!
Oy! We are gluten-poisoning soul mates, Dude. I spent 24 years being kind of a giant b**** because of gluten. Everyone who sees me now says “You look great!” but what they really mean is “The b**** glare is gone!” 😉
I have fatigue like you would not believe. Even while out to do errands I look forward to red lights so I can close my eyes for few seconds. When i make it to the store i often sit in car and close my eyes to sleep for awhile, and in the store i often catch some cat naps.Many times will try to sleep on the toilet when diarrhea kicks in and if that isn’t bad enough, the DH surfaces especially on my eye lids. Itch like crazy worse than poison ivy, flakes like dandruff and swollen so bad is hard to eve see. I live alone and seldom talk about these things as no one truely knows what this life is like. They just think all i must do is not eat bread, cake pasta. Since my instestines were so damaged I worry about more damage when accidently glutened. Days that i feel close to what must be normal for others are rare, I don’t know why the tiredness continues. If only others would try to understand how our life is living with celiac, and not dimiss it like it’s nothing serious.
I so understand where your coming from…people are very dismissive. I have had people argue with me because they thought I was making sh#t up. I have become a recluse. It gets better but life is still very limiting.
So glad to read all the comments and find out I’m not alone!!! I and my family have finally figured out a full time-table of all the wonderful symptoms I can expect when I get glutened, even just slight cross-contamination:
10 minutes after gluten – blisters in back of mouth and throat
30-45 minutes – rash down arms, across chest; try not to scratch them bloody
1:30 – severe stomach cramps; get a clear path to the bathroom
3:00 – require reserved seating in a small, tiled room for quite some time
6:00 – extreme fatigue hits, along with depression; would cry, but pulling a tissue out of the box to blow my nose takes too much energy. Must sleep. No talking to me, I’ll yell or cry at you. Or both. The bee-yotch is now in the house.
Day 2 – Migraine headache hits. Severe arthritis-like pain in all joints hits. Starving of the hunger, as there is nothing left in my system. Please don’t talk to me, brain fog is so bad I can’t remember one-syllable words, it will just frustrate us both.
Day 3 – see Day 2, and plan on being in this state for awhile
Week 2 – joint pain is mostly gone, digestive tract is still on fast-forward, can now remember almost all words at a 5th-grade level, headache is gone, and it’s almost safe to try and have a normal, rational conversation with me. I’ll only try to bite your head off half the time, you guess which half!
Week 4 – finally back to baseline. Spend several days tracking down and apologizing to family and friends unfairly lashed out at during the gluten-fueled meltdowns. Uuuuuuggggggghhhhhh.
And, some people with Celiac actually make the choice to “cheat” and eat gluten on purpose???!?!? No freakin’ way. 🙁
Sorry, GD, about the glutening. That sucks.
My symptons are really bad joint pain in my fingers, wrists, and ankles. Throw in some fatigue and general malaise for good measure. All that starts about 3 hours after the ingestion of the offending gluten.
If I get a lot of gluten, I get so dizzy I can barely stand up and that causes nausea. My bones hurt and I can’t focus, along with sharp stomach pains. I also sometimes get earaches or my hearing randomly fades in and out briefly. It’s absolutely horrible. In minor cases, I just get some nausea and irritability and my bones hurt. It takes a couple of days to hit me too, so it’s good to see someone else experiences this as well. Last time it was really bad, I accidentally ate a regular pita bread that I thought was marked gluten free. Two days later I was at work and it hit me like a ton of bricks. I worked at a senior day program and by the end of the day, I thought I would be the one needing a caregiver. It took several days to recover from.
I forgot another symptom..tinnitus. I feel like I’m living amongst cicadas the ringing in my ears gets so loud.
Within about 30 minutes it starts with sinus pressure and pain. I sometimes have a hard time distinguishing between exposure to gluten and seasonal allergies, which delays my self treatment. This is immediately followed by a headache which turns into a migraine. Within about 2 hours I get extreme fatigue in which I must lay down with a pillow over my head with no light and sound. Usually by the next day all those fun digestive sympotms show up. On occasion, I will break out in a rash on the insides of my arms and/or my chest. I’ve never connected it to gluten exposure because the rash is very, very mild until now. I used to think it was contact dermatitis from workin in my garden or from my laundry soap. I don’t think that anymore. If I know I’ve been glutened, I will take a probiotic and gluten enzyme to try to lessen the symptoms.
For me – 1hr 20mins after eating gluten. My tummy blows up so I look 6 months pregnant, constant yawning, joint pain, foggy head, pain like a headache and constipation; this all lasts for 2/3 days.
After drinking milk I have the feeling of rocks in my stomach and want to be sick; but never am, which would at least relieve the discomfort.
Then I turn into a Gruffalo for these 2/3 days. Cos normally, I’m a dainty flower swaying in the gentle breeze of life 😉
I have been off Gluten & lactose for a month, but at the moment am getting poisoned on average once a week. Thanks to damn food manufactures who can’t be bothered to label gluten on their packs, but do on their websites.
I may have to go Gruffalo on their hides!
depending on the severity/ type of the glutening, symptoms usually set in about a day later and can include: anxiety, insane fatigue (with insomnia due to the aforementioned anxiety), headache, dizzy, joint pain (knee and costochrondritis), pain under my lower right ribs , really “special” flatulence, bloat, acne, terrible rash on my legs/ arms/ feet, and takes a few days for a BM, and then it is just terribly “special” itself. before going GF, I suffered from regular panic attacks that would wake me in the middle of the night. both my medical docs and the “shrink” recommended to me could find nothing wrong with me and just suggested that I was somehow predisposed to anxiety. After going GF, no more anxiety (even throughout 3 intense years of severe personal turmoil and stress). Go figure.
That sounds SO much like me when I get glutened….except, that I can tell within about 10-15 minutes that I have been glutened. First, I get overwhelmingly tired. Then I start to get weak (where it looks like I am drunk and trying to walk). Then the awful and all too familiar GI symptoms. The worst of it usually lasts about 12 hours, but I still feel tired and have an unpleasant attitude for a couple days after that.
And when I have to work (I work 3 12-hour night shifts in a row at a busy hospital), it’s unbearable! I have to suffer through it and am not allowed to take extra breaks or even call out if it’s severe enough…without consequences that is.
Heather, celiac is recognized by the ADA and you should be able to get FMLA coverage as well. I understand your situation well, I am a nurse and work10 hr shifts. Hell on bad days….
I have a quicker reaction time, usually the next day, which was ironically today:( Aside from spending my day in the bathroom, I turn into a sad, depressing lump, literally. My mind goes to very dark places again and I just want to hide from the world. My poor husband just avoids me because I am quite a bitch whe confronted that ” all you (me) have done all day is sit on the couch reading a book.! I swear I would never wish this crap on anyone but if only my husband could experience what I go thru when I get exposed JUST ONCE life would be a little easier. Crabby bitchy tired achey weepy and shitty.
Your comment reminded me of what I refer to asl “the return of the 7 Dwarves of Gluten Head” :
Weepy, Cranky, Racy, Spacey, Dopey, Angry and Achy
Interesting all the different reactions…For me glutening ussually doesn’t show up right away so like you i have a hell of a time figuring out exactly what it was that got me. i have a LOT of bloating like my stomach expands so much my sister calls it my “gluten baby”. it truly looks like a basketball. My tummy get gurgly too and this lasts for ~ 2 days and gets less and less as i eat more and time goes on. I get very tired as well and a bit brain foggy but not so much i would call off work. Like another commenter it has other effects on me – namely it makes me scared to eat outside the home. i have major anxiety when i eat out luckily my boyfriend understands and we usually only go to pre-approved places. i wish i had symptoms that were more immediate so that I had more of any idea of what got me. This post and comments show how unique we all are and can’t just be lumped in one big “celiac” category.
OMG Gluten Dude your reactions decribe my 13 yr old daughter to a T when she gets exposed to gluten- she doesn’t get the stomach issues like the rest of the family- she gets mean as a snake.. angry,hateful, hard to deal with, yelling and screaming at her brothers and sisters, gives me and her father major atittude complains about everything-She is in such a fog that she can barely do the simpliest things without help which is frustrating for her as well as everyone else.. generally she is a real treat to be around for nearly a week or so after. I have learned to just send her to bed everyday for a few hours when she has been exposed – it’s the only thing that helps and it keeps the rest of us from wanting to kill her lol. Before we knew about celiac disease- I had no clue why she was this way- she had been like this since we was 3 and was diagnosed with childhood epilesy and put on medication to control seizures. I really wondered if she had autism or adhd though it never quite fit with her symptoms or perhaps it was her medication causing her behavior- this is known as the keppra-tude controls the seizures but makes a person difficult to deal with. Now that we know and the family is gluten free- she is a different kid altogether. she is kind, tender hearted, sweet. happy, easy going.. who knew a food could have such a profound affect on a person’s personality. I sure didn’t. For me gluten causes a whole host of symptoms in my entire body that lasts from a few weeks of the severe, to a month of the lesser but still very annoying. The best way I can describe it is the worst case of food poisoning combined with the worst case of flu- and a nasty lingering hang over and like you’ve run over by a mack truck for good measure. The immediate is 2-4 hours after exposure.Bloating and gas- I swell up like I am 9 months pregnant and gain 10-15 lbs over night, my stomach gets rock hard-and the crippling pain starts and constipation, then chills, all over body aches. About 6 hours after exposure non stop vomiting starts and the BIG D- this goes on for about 4-5 days depending on how bad the exposure was. In short I feel like I am dying. I also get Migraines, vertigo, dizzy, loss of appetite-. Everytime I eat for 2 weeks I have stomach gurgling, pain, indigestion and heartburn.Lingering things are Pain and stiffness in my joints and bones, hair loss, insomnia, extreme brain fog, depression and hopelessness, sinus and allergy symptoms, pms, irritibilty, mood swings, I get overly emotional. A blistery rash in my scalp, hands, arms , legs and stomach. Weakness, fatigue..It feels like my entire system is off balance and out of sorts- spirt , mind and body. It takes a good month to feel normal again.
I forgot to mention that it only takes a crumb to make me sick . I am extremely careful as a result – I never ever cheat..The few times I have gotten a big time exposure I can tell within 15 minutes. I get very dizzy, spacey, extremely tired and lethargic. I can barely walk, stand up or speak without slurring , My brain turns to mush and I can’t concentrate at all. I fell like I might pass out – and then suddenly before I know what is happening- I better get to a bathroom and fast- D!!!! – one of the worst times my husband and I were in Wal-mart when it hit me-.it was bad! After I came out of the bathroom- which he had to help me find because I could not think of where it was- we go to this particular location at least 2 times a month and I am very familiar with that store. – he had to practically carry me to the car and into the house. It was a good thing I was not alone- no way I would been able to drive home .Like someone else mentioned it was like I was stumbling drunk- the weeks that followed were not pleasant at all…
Gluten Dude,thanks for the great blog site.
To Chelsea, I also have DH. Started in late teens, skin symptoms would come and go, not severe one spot on my ankle mostly; the gastric symptoms were mild mostly certain breads would cause indigestion type feeling. I never talked to a doctor about it. In my early 50’s, I went on a week long camping/hiking trip with my oldest son and came home with textbook symptoms of DH. After a misdiagnosis of fungal infection, misleading treatment (rash reponded to steroid in anti fungal, but returned after it ran out) and my own foolish wishing it would just go away on its own, I returned to the doctor a year later with a large blister on my forearm, as well as the rash in the typical places – all verrrry itchy.
Doctor scared, immediately sent me to a dermatologist, saying it was an autoimmune disease. Biopsy confirmed DH.
I started the GF diet, and felt immediately better than I had in years; more energy, joint pain greatly reduced, mouth sores cleared and did not return, but it took months for the itchy rash to go away even with the dapsone. I was able to eventually go off the medication. I now know that I must avoid sesame, oats (even GF), soy flour as well as gluten or the itchy rash will return. So back to the original question: yes fatigue, muscle aches, stomach pain and a day later itchy skin without the rash if it was only a small exposure. I sometimes have spontaneous minor skin relapses and steroid cream for a day or two takes care of it.
I discovered the oat reaction after being GF 2 years and mostly free of symptoms when I made a batch of GF oatmeal cookies that I munched on over about a three week time peroid. I got a major DH relapse that took months to clear even with taking double the dose of dapsone (this drug causes anemia and fatigue) and I got really depressed, that also took months to get through.
All this to say, I tend to be extra cautious and avoid bad foods. This can be isolating since food is a major social event in our culture. Tiny exposures do not seem to bother me, if infrequent, but any large dose (of gluten) or multiple tiny doses over time induce a relapse of DH/celiac symptoms that take a significant amount of time to go away.
I have the exact same symptoms but mine show up about 2 hours after being glutened. It totally sucks!
So that’s the feeling I’m feeling mostly everyday…sigh*
I take anywhere from 1-2 hours after being “glutened”. My stomach bloats out and looks like I am 6 months preggers, I get a horrible headache, I feel nauseous and burp a lot. It’s lovely. Then I’m “foggy” for a few days….no energy….SUPER tired and my anxiety comes back. It lasts about 4 days and I’m just so off my hubby notices right away. It’s just such a terrible feeling.
I get some symptoms immediately that I’ve never heard anyone else mention. First, within 20 minutes of exposure, I get a sensation in my throat. Not quite a sore throat, but it feels rough and hard to swallow. Next the back of my neck feels really tense. And most recently, I have a tightening in my chest and it feels like either my heart is racing or that it’s tough to breathe.
Has anyone else ever had any of these symptoms?
These areas the symptoms that I get! Sometimes my heartbeat becomes very irregular too shortly after I eat anything with gluten. I get the feeling like I cannot breathe deep enough and my lungs feel very weak.
It’s frightening, I know the feeling and your not alone!
Hope you feel better soon.
Hannah.
I’ve had the racing heart, thought I was having a heart attack a few times. After being glutened my blood pressure soars. Which all causes me to have a panic attack which makes it feel like I can’t breathe. During an episode I took my blood pressure and it was 180/110. Then the cramps kick in and off to the toilet for a week or so. I’ve heard of other celiac’s having the racing heart too. The throat closing up sounds like a food allergy on top of the gluten exposure. But of course I am not a doctor. I find it amazing that so many of us have a multitude of different symptoms.
Right away: I feel like I’m having trouble swallowing. My throat isn’t swollen or anything, it just hurts to swallow any more food. This doesn’t happen every time.
Soon: I feel bloated and heartburn-y. Sometimes my skin prickles. It’s not hives, just tingling.
Next day: About 23-24 hours later, I have diarrhea.
For the next 2 days I have nonstop panic attacks, depression, irrational thoughts about how awful I am, irritability, and confusion. I also tend to be clumsy. It’s like PMS times 10. And my joints ache terribly.
For the next week or two, my stomach will be a little more picky about what it wants to digest. Ordinarily I can eat fried peppers and onions, but after I’ve been glutened, those will bother me a bit.
Hey Dude, I have just read through all of these symptoms and they are as varied as the number of people who were kind enough to write it. I think you should collect all of the answers and put them in book form and then send them to every damn doctor out there and say, “SEE, YOU DAMN IDIOT” “this is what we are trying to tell you and no one is listening!
OMG.. well as a non-celiac gluten sensitive 70+ plus year old woman, the first thing that happens to me is a searing sinus headache and my nose starts dripping. That’s my clue to start drinking a lot of water, gobble a couple of DPPIV enzyme pills, and start pushing Greek plain non fat yogurt. That’s Day 1. Day 2 and 3– I am constipated, bloated and uncomfortable. Day 4, I am on the toilet most of the day, don’t even want to leave the house. Day 5, I am usually back to normal. Meanwhile, I don’t sleep well, feel like crap, ache all over and am generally miserable. I do believe the water flush, and the yogurt, help as well as a dose of Pepto.
Did you notice all of these were different? very little in common?
My symptoms started 6 years ago – migraine, which lasted months on and off, severe constipation and abdominal bloating, indigestion – to the point I would be belching for hours on end, cramps in my legs, joint pain, swollen legs, dizziness, foggy head, exhaustion, mouth ulcers and dry mouth and severe depression. I have had head ct scan, colonoscopy, endoscopy, been seen by gastric, rheumatology, ENT, neurology and endocrinology. I literally had a light bulb moment a couple of months ago, when I kept on mentioning to my boyfriend that my legs only seemed to become swollen after spending weekend at his house (lol), and the swelling would disappear a day or two of being back at my home. We deduced that whilst at his we snacked a lot – bread, biscuit snacks, LAGER, crisps, pizzas – things I do not indulge in so much whilst at home. I then cut gluten from my diet and the improvements were instantaneous. I then re-introduced gluten to my diet and the awful symptoms came back. I have yet to enlighten my GP – and all the other medics whose vast medical knowledge they cannot make a diagnosis of celiac.
I got glutened for the first time last night, ironically from a GF product. It cannot be anything else, it had wheat glucose syrup in it and after 3 hours of research I figured it would be safe from all the info I gathered. Apparently I can’t handle it. I could tell this “morning” (ok more like late afternoon) when I got up after 15 hours of unrestful sleep with terrible back pain and the awful brain fog. I am at work now just trying to get through it. I had weird tingling feelings below my knees which I never used to have before, it is the first time I get that. This is all accompanied by blurry vison and hypersensitivity to the noises around me. I had been doing so well for my first 4 weeks GF 🙁
I don’t have any GI symptoms at all which made the origin of my other symptoms even harder to identify. Now I definitely know I am much more sensitive than I originally thought. No more delicious jelly bean factory candy for me I guess (the only candy I felt I wasn’t going to be able to give up). It’s all a game of trial and error…
If I get glutened, exactly 4 days laters I will wake up with terrible chills and sweats at the same time. As a matter of fact the last episode happened somewhere in Texas while on a road trip and my feet were ice cold while my chest was sweating. But I still had the painful goosebumps all over.
I get chest pains, sore throat, headache, body aches, the jitters, exhaustion and the overall feeling I’m going to drop dead. I went through 6 months of hell, a sinus surgery I didn’t need and 4 doctors trying to figure out what was making me so sick 3 days a week.
I recently (I’ve been off gluten since 2012) became bedridden due to extreme fatigue. It was so bad that I was falling asleep on my drive to work. I was losing control of my business, my family and my life in general. My head was pounding around the clock.
I decided if this was in fact food (again!) I was going to find out.
Dairy and sugar. Oh and gluten free oats. The moment I gave up dairy, sugar, and oats, I was out of bed and back on my A game.
Now I have not only lost my lifelong love affair with the truck stop diet, but also my relationship with any food containing more than dust as the main ingredient.
Has anyone else had this happen?
I had made peace with the no gluten for life deal. I stopped asking why.
But 2 years later and now I can’t have dairy or sugar without going into a coma!?
Ironically I can eat raw honey and real maple syrup without any repercussions.
I appreciate any and all input.
Got hit at a July 4th BBQ this year, despite taking all necessary precautions.
The first thing to hit me (within 3 hours) is always the fatigue. I’ve probably slept more in the last three days than I slept in the previous week. I can’t shake it, and that will last up to three weeks.
Second, abdominal pain, bloating, vomiting, diarrhea, etc. will kick in. It’s usually not all of these at once, thankfully. That’ll last almost as long as the fatigue.
Third thing I usually notice is the brain fog, to the point of 30-second to 5-minute blackouts. I can’t remember where I was, what I was doing, who I saw. It’s completely blank. Luckily the blackouts only last a few days. I’ve come out of that part now, so I feel safe driving again.
The rest of these are in no particular order.
I’m easily irritated, hyper-sensitive, and I cry…a lot. Ugh, that last part is so girly. I’m not a crier. My boyfriend is particularly wonderful about it, though. He has yet to judge me for crying during “I Didn’t Know I was Pregnant” when I judge myself for even watching it.
The pain is awful. My diagnosis only happened because I was having chronic systemic muscle spasms from my inability to absorb magnesium. They don’t typically occur throughout my body anymore, but in my forearms, calves, and neck, they get bad. My joints get inflamed, my body (especially my breasts) can barely stand any touch (poor boyfriend), and orgams can send me into incredibly painful uterine spasming for hours if I have more than five or six (common enough since he’s quite the catch 😉 ). Good thing that last part only lasts a week. The rest of the pain goes on for up to three weeks.
I’m slowly recovering this time. I’ll get past it again, but now I feel like I need a nap before I go into work.
thanks for this site, it is nice to know im not crazy and to realise that it takes as long as it takes after exposure to get back on track… this means we need to give ourselves permission to heal… to take the rest or break we need, to get support (from lecturers or bosses, or partners etc) and know that it will be over with time and we can try again…. at least it is a condition that you can do something about (a percentage of the time depending on where when how and what you eat) unlike so many health conditions… grateful to know that it is not a figment of my imagination and i dont need to beat myself up because of a physical issue… 🙂
When I get glutened I get even more exhausted, dizzy, feel super “high” and unable to focus. Most the time I get really emotional as well, sometimes suicidally emotional. I’m in college and have a bit of trouble sticking to the diet sometimes, ended up having to go on antidepressants to stable the mood swings. I’m becoming more determined to do better and get off the medication though.
I love following your blog and this is my first time posting. Whenever I am glutened I read this blog post and tell myself I am not going completely crazy! The symptoms you list are me exactly and also include anxiety where my heart is just beating out of chest. I find the best cure is to read about how other people feel the same way and constantly remind myself its not in my head!
I don’t have any friends who are celiac and your posts and community are invaluable. Thank you!
Oh my gosh…I have no clue if this is still alive and well, but I googled my symptoms and this thing popped up. So I tried grain free (mostly) for 2 months. Energy was great, moods were good, etc…I’ve been eating whatever I want for past 2 months and can’t get out of bed, swollen, blah. Last night I had a major carb fest and within 2 hours my arms hurt so bad I took and begged for tylenol. I am cranky and angry today and can’t make any decisions. Is it the gluten??? So weird.
Amberly, if you’d like to test for celiac disease you need to make sure you’re eating gluten before you get tested. I’ve read eating a few slices of bread a day for a couple of months is enough. You can get started by getting a blood test but I’ve heard many times it’s not correct. The only 100% way to know is to have an endoscopy. Good luck!
Laura
So glad I’m not crazy…it’s just that I ate gluten!
so happy I am not crazy too!!!
brain fog, extreme irritability with everything and everyone, inability to concentrate, unsteady gait, driving is potentially hazardous, difficulty seeing in some cases
no upset stomach but upset everything else.
I google everything that could enter my bloodstream. The other day I googled band aids. I don’t take chances anymore because I like happiness and I like productivity.
Shelley, I thought it was just me but I definitely think I’m a little dangerous driving after being glutened. I try and avoid it as much as I can until my brain clears and my reactions are back to normal!
I have a gluten protocol too now. It includes B vitamin, 2 turmeric, 2 antihistamine, garlic, other anti-inflammatory supplements. I’d recommend taking these everyday (glutened or not as a preventative measure) I take something for the pain in the morning at night I take something to help me sleep. I find that some exercise does help but baths make me irritable as much as I think they could help with toxins. Its good to know what products are safe to purchase, but always double check the labels if you’re not in the gluten free aisle just to be safe. Recently I accidentally ate some of a non gf Annies mac and cheese bowl because I thought it was on the list of my gluten free foods, but they also had a non-gluten free version that was very similar. After my first bite, I knew I had ingested wheat and I panicked. I am going to try learning how to cook foods I love. I have a great pizza recipe. I am learning how to make gluten free crab rangoon and Indian. I am too afraid to eat out anymore so I just don’t but learning how to cook will make it a lot easier. I have found a lot of gf foods that I love as well.
in my last comment I wrote,
I have a gluten protocol too now. It includes B vitamin, 2 turmeric, 2 antihistamine, garlic, other anti-inflammatory supplements. I’d recommend taking these everyday (glutened or not as a preventative measure)
don’t take the antihistamine everyday. Just the vitamins.
Nothing too different to anyone here. I was diagnosed with celiac disease almost a year ago and have been gluten free for almost a year. Strangely my symptoms then are a lot less than they are now, when I have been glutened. Back then I was exhausted and my body felt ‘chemically off” constantly feeling like I was suffering from anxiety, even though mentally I was OK. Mentally I had brain fog. Another symptom was constant 24-hour heartburn.
So now if I have been glutened I know within 2 minutes, I immediately get a stabbing pain in my stomach, followed by extreme exhaustion and flu-like pains in my joints. It’s only happened twice in the last 12 months fortunately.
Thanks for sharing everyone, it’s good to know it’s ‘not all in the mind’.
My reactions to gluten have become much worse since starting a GF diet. I have severe pregnancy-like abdominal bloating within an hour-had this happen after finishing husbands beer. I get very foggy and crabby, and have knee pain that I did even suspect could be related until I read about others symptoms. I won’t go into some of the other GI symptoms, just hate to see how much worse it could get.
So happy Im not alone, glad I found this page. When I start feeling glutened it starts with severe intestinal pain followed by either severe diarrhea or constipation (for some reason its always one or the other). Just got glutened today and have been running to the bathroom, severe pain, upset stomach, brain fog and dizziness. My symptoms start almost immediately.
I thought it was interestesting seen people posting about racing heart. Before going gluten free (diagnosed with celiac) 6 months ago I had a lot of unexplained problems with a racing heart. I was in and out of the emergency room with my husband so many times trying to figure out what was wrong…. So awesome that I finally figured out why!
Cheers to your health.
I’ve know gluten/wheat has been problematic for me for years. I’m trying to take it seriously at the moment as i’m pretty sure if makes me depressed: although i’m still in denial that gluten can cause depression. Anyway I stupidly had beers, cake, break over the weekend and still feel mentally awful. Glutendude: i’m wondering how long does it take people on average to feel better after a gluten binge?, I think for me its 1 or 2 weeks!!! What about anyone else?
GD and others,
Have any of you experienced this?
After eating Gluten, has anyone experienced, itchy skin along with nerves tingling, like crawling feeling and nerves being painful?
I also feel like I experience severe Brain melt down. Not just the inability to concentrate, but the feeling of something being ‘very off’. Like GDude mentioned in his story – the feeling of being ‘chemically off’. It’s hard to describe. I have horribly weird and crazy like nightmare dreams. When I’m laying in bed trying to sleep, my mind runs and runs and won’t stop.
I also get this feeling of…well it’s hard to explain other than saying: “The – I feel like I’m dying feeling”. Like you are about to pass out you are so exhausted and like you are just going to die. Hard to explain.
Also – I get muscle JERKS….not all the time. Very random in frequency and where I get them. I might be lying in bed and my arm just jumps. Or my leg might jerk while I’m sitting at work. Completely involuntary!
When my symptoms are at their very WORST, I get horrible “Myoclonic Jerk”. That’s not the muscle jerking I mentioned prior. This happens each and every time I’m about to fall asleep (go into REM state). Imagine you are falling/drifting to sleep and then you’re entire body jerks without you having any control over. Now imagine this happening over and over for hours on end while you are trying to fall asleep. It’s a nightmare! Dealing with that has since gone away after going Gluten free for several months and being just re-glutened, I’m lucky so far that I haven’t started this symptom again and hopefully won’t.
So….when I was eating GLUTEN like crazy (normal life really – since birth until recently) and these symptoms (at their worst) started, I tried going GF and things got much better. I went back on Gluten to test after four months of being off Gluten and sure enough I feel like total crap and the “am I dying” feeling and horrible nights sleep, after several months of: “Sleeping like a baby”. So again, I haven’t been officially diagnosed, but to me personally I don’t think I need to. I know you need to be on Gluten to get a proper test, but after this latest bout with it, I just can’t handle eating Gluten for several months to test. Weither it’s all in my head or not, it scares me now to eat Gluten!
I also thought (and still not positive) that this is LYME disease. I did test negative for that and West VA Mountain Tick whatever it is. There were (2) tests and I tested negative for each. But looking up online, my symptoms seem to fit Lyme alittle bit better than Gluten, so I wanted to ask has anyone experienced any of these symptoms. Again, after going off Gluten and then having such a better time with life – I went back on and am now currently suffering.
Please let me know guys and GDude!
Thanks,
-WHD
WHD,
I know EXACTLY how you are feeling! I am feeling just the same way after being glutened this past week. I also get the brain fog that you are describing. For me its like I’m in a cloud, very forgetful and find it hard to find the right words to describe things. I’m always mixing up my words. I’ll have to re-read this post at least three times to make sure it makes sense when I’m done haha. (sure enough I found lots of reversed words!) I also have the racing mind (and racing heart) before bed and bad dreams. My thoughts run crazy in my head as I’m trying to fall asleep. I find meditation helps and clearing my mind. Sometimes I’ll even google sleep meditations on youtube and they really help.
I hope I can help point you in the right direction for the muscle jerks and tingly crawling sensation in your legs. I have had this for about six years and for me it is Restless Leg Syndrome. It is made considerably worse when I am glutened. I noticed it especially this time around after getting glutened. I felt it not only in my legs but especially in my joints (knees, shoulders and elbows) and also in my arms. I’ve been trying to track what I’m eating and drinking to see what is setting it off more than usual. When I’m glutened it’s worse in general but I realized that it is made much worse when I drink coffee (especially in the afternoon or evening) and also when I exercise or stretch too close to bed. You can google things that set off or make the RLS worse.
I find exercising, stretching and yoga during the day helps me to have less RLS night. I also took a sleeping pill just one night after a few restless nights and it was amazing to finally sleep. I also did not have coffee that day or exercise close to bed. After that I’ve just about gotten back into my normal pattern of sleep.
Good luck with everything and just know that you’re not crazy and you’re not alone! I hope things get better for you soon!
Laura
Hi WHD,
Just thought I’d add that I get itching skin too, and random patches on my body which feel like they’re burning.
After 25 years of no answers from the health service, I gave up gluten about 6 months ago and tentatively started to wonder if I was feeling better. I no longer had to stay in bed until 12pm every day, and had energy for the first time! However, some of my other health problems have recently resulted in my finding an amazing doctor who is keen to investigate everything thoroughly, so I’ve decided to go back to eating gluten for three weeks prior to an endoscopy (I have 0 IgA so blood tests aren’t helpful). Five days in, and I’ve realised my symptoms are immediate. As soon as I eat a spoonful of couscous/pasta, my muscles start to shake and pain travels down my arms to my fingers. The fatigue is overwhelming – yesterday, after two mouthfuls of dinner I was almost asleep with my face in it… It’s a good job I live alone, as I suspect it looks pretty amusing!! I get stomach pain which feels as if I’ve swallowed shards of glass, and continual joint pain. Despite all this, I’m expecting the biopsy to come back as normal just because I’ve had SO many tests with no answers over the years. It’s very, very hard when you’ve spent your entire life being told you’re making it up, and unfortunately I don’t rate my chances of explaining a ‘gluten sensitivity’ to my family members…
It has been a while, thankfully, since I had been glutened. However, like you, my symptoms hit about 2 days later. Since it had been so long, I didn’t even realize I was being weird. My dad and fiancé called me out this past weekend and said, “have you been glutened? You seem to be dragging recently.” I was tired, snappy, and now the anxiety has set in. Ugh. The problem is I feel the need to talk about my imaginary problems and feelings when I’m like this, which issues between my fiancé and I. It’s best if I just stay away and nap, but it’s difficult. I’m hoping this will pass soon. I’m not sure what it was exactly, but I’m thinking it was the meal at Outback I had with my future in-laws. I’m an idiot. I need to stop eating there, but I hate being that high maintenance person who can’t eat anywhere. This is the price I pay for trying to be “normal.”
When I get glutenated I will spend the next several hours, at times it was 2-3 days living in the bathroom. (TMI, but it involves both ends) I also get mouth sores, a firm stomach, fast heart beat, and pure confusion with a mild to moderate inability to maintain balance. Plus all the abdominal pain that comes with it.
So, I ate gluten free pasta yesterday and experienced one of the worst reactions I ever had. I’m not a diagnosed celiacs but what is interesting to me is that I never experience gastrointestinal/digestion symptoms… maybe my lower stomach is bloated but all of my reaction is through bodily aches and extreme mental “offness” and a craving for relief. Almost like my brain stopped producing serotonin and leaving me with headaches and a feeling of sleeping all day but that will hardly do anything. I was wondering if anybody else just gets neurological symptoms without the digestion pain or diarrhea? For me it feels like I have no problem digesting it, but when it comes into contact with my blood and brain it causes a whole host of problems.
The thing with me also is that I’m not suspecting it’s just gluten… because after eating gluten-free pasta I had the same reaction as if I had regular pasta. It honestly is the worst thing I can eat. I can tolerate some breads to an extent, but they obviously do affect me to a degree. For instance I can tolerate arnolds oat-nut bread, it doesn’t really give me symptoms but I suspect it probably is doing something negative. I was just wondering if it’s possible to have these symptoms without the GI issues?
Also is it possible I can be allergic to just pasta whether or not it is gluten free or not be able to handle it or something?
My son has been gluten free for almost 4 years on the advice of a paediatrician as he had gas and discomfort. Unfortunately the paediatrician didn’t tell me that the test needs to be done while on gluten, so he has not been diagnosed, we just suspect he is gluten intolerant or celiac. He has had discomfort sort of symptoms, what appears to be trapped wind and possible reflux building up for a few months. I had been giving him the odd thing that says “made in a factory that contains wheat, assuming they would be ok as they didn’t list it in the ingredients. But in the last 2 and a half weeks he has suddenly got a lot worse with awful symptoms of what appears to be trapped wind and reflux (don’t know for sure as he is not able to communicate) and terrible abdominal pain along with foul smelling stools, intermittent diarrhoea and soft stools. He had been having small chocolate bunnies a few times a week for around 3 or so weeks until almost a week ago when I realised they contained barley. (Why on earth is there barley in chocolates, for goodness sake?). I was just wondering if this would cause his symptoms and would they still be going on almost a week after having the last of these chocolates? Reading all these comments about how even traces in oil or an unwashed glass can cause symptoms makes me feel terrible.
Good Morning,
I have battled Gluten on my own since I was a teenager. I started removing foods from my diet in my early 20’s which included oatmeal and whole wheat breads, etc. I decided to get “officially diagnosed” at the age of 39 and, not to my surprise, the blood work and eventual biopsy confirmed Celiac. I went 100% gluten free for 6 months before I made a mistake on a meal and I was shocked at what happened. About 2 hours after I ate gluten I started vomiting profusely until every last bit was rejected and stayed in bed with flu like symptoms for about 6 hours(sweating and achy joints). It has been the same result the next 3 times I made bad choices. I am terrified to eat gluten now! I often have bowel issues but it has been the norm my whole life so I don’t think much of it. You can bet I check labels three times before I eat it now.
On a side note, I had symptoms since my early teens which I want to share for any parent that may suspect Celiac in their child: (these are just symptoms I have had and not intended to be a diagnosis for anyone)
My teeth were very brittle and starting chipping at the age of 15
I had small red rashes on my buttocks off and on(more on than off) for 20 YEARS which I thought was just a “skin issue”. I am a typical man and rarely go to the Doctor for this type of thing.
Foggy mind was the norm and I was not even sure it was Celiac induced until I read the above comments lol
My eye doctor said I have the eyes of a 60+ year old man, but 20/20 vision(I am 42). He said there were gray spots on the xray of my eyes which typically shows up much later in life.
Hope this is somewhat helpful.
Well, I can’t get in to see the GI for another month, but about two weeks ago I felt I was in too much debilitating pain and nausea and exhaustion to keep eating gluten, as that’s what I, my dad, and my primary doctor think is causing my problems. So I decided, fuck that whole eating-gluten-till-tests-are-over thing. I only need to eat it for about two weeks before the biopsy, so I’m staying away for now. I’ve been really, really careful. And feeling amazing. But! Yesterday, I went to a favorite cafe of mine that touts their gluten free options and ordered a gluten free fried tofu sandwich, specifying that everything needed to be gluten free, EVERYTHING. I went to go get my food (I ordered takeout), and checked it before I left. I saw that the onions looked breaded, and when I’d ordered the sandwich before they were grilled as to avoid gluten, so I went and asked about it. I was like, “were these onion strings breaded in a gluten free flour? Because I can’t have any gluten, and they look breaded.” The server looked incredibly confused before sputtering “um, yeah, it’s gluten free, it’s all gluten free.” I was like “are you sure? I ordered this a while ago gluten free and the onions were grilled.” And he was all “um… Yeah? It should all be gluten free.” So foolishly, I was like, well, my receipt says GF, it’s a GF bun and fried tofu patty, and I asked him twice, so even though it sure seems like wheat breading, I guess I’ll trust him.
I ate two pieces of the onion and then waited about half an hour, because I wanted to see if I’d be okay. I felt a little dizzy and nauseous, but chalked it up to a psychological reaction. I figured I was fine, so I started to eat the sandwich.
About a quarter of the way into it, I had to ditch it and run to my bathroom.
Since then I’ve just felt worse.
What happens for me, although I might be intolerant but not celiac (not sure yet because I haven’t had the biopsy and can’t go for at least a month lololol shoot me) and maybe I’m just full of shit, is… Within about ten minutes, I ballon way out. Like, my stomach expands visibly and uncomfortably. I start to get nauseous and dizzy. I either get constipation or diarrhea or both. I feel clammy and sweaty and shaky. I get achy back cramps and sharp stomach cramps. My vision gets blurry. I can’t think. Everything is confusing. My throat feels weird, like my lymph nodes are swollen (idk why). I’m irritable. My heart races and pounds and I feel jumpy. My whole body feels antsy and tense. I need to be moving something constantly, like my foot or an arm. I can’t sleep because I always feel the need to move. I heave and retch. I get a migraine. And I need to pee a lot.
I nearly passed out last night on my way to the bathroom because I had so much abdominal pain. I couldn’t sleep because of the pain.
And now my mom’s telling me that I feel so bad because I didn’t sleep. I’m furious. If I hadn’t developed this problem about six months ago, I wouldn’t even be living at home right now. I feel like death.
My neck gets stiff only hours after eating gluten. My head starts throbbing than my face goes numb. IMy head burns. Burns like it is on fire or a fever of 120 degrees, can’t even think let alone move as I throw up every ten minutes. The nausea sticks around for the entire time. Usually about 6-8 he’s later the head ache starts to subside but I have been sick for over 12 hrs many times. I have still not had a diagnoses yet when I avoid gluten I feel great. I say it probably takes 3 days to feel normal usually only to gluten my self again. I’m still learning 🙁
I was recently glutened and rereading through the comments section on this blog post. It always makes me feel better knowing I’m not alone! I noticed it sounded like a lot of people’s symptoms go away after a week or two. My digestion symptoms go away by 2 weeks but my brain fog, anxiety and depression take at least 3 to 4 weeks to start to subside. It’s only after 6 weeks that I start to feel completely myself again. Does anyone else feel like it takes them a long time to recover?
It always takes me 6 weeks to get back to normal. The first round of symptoms are about 2 weeks to clear, but I still always feel rough and exhausted for 6 weeks.
I am just getting over a glutening. I’m not sure what caused it but it’s looking like it was a ‘spiced’ rum- the ingredients for flavouring weren’t listed but it’s the only thing I can trace it to. I’ve noticed I have a very predictable cycle of symptoms yet it ALWAYS takes me a while to realise it’s happening! Usually the first sign is a feeling of ‘being anxious, but I’m not’ which usually transpires into feeling ‘shaky inside’ and having a tense sleep where I’ll think about something really mundane all night for absolutely no reason e.g. what will I wear the following day. I’ll also have bad night sweats and feel really unsettled all night- like something bad is about to happen (it is). The following day, I’ll then feel ‘not right’ and will say ‘I don’t feel right’ about 20 times until I burst out crying and scream at my husband for not saying the right thing/breathing/existing. That’s usually when the penny drops and I realise what’s going on and I head back to bed and sleep for about 6 hours. Following all that joy, I’ll have 2 days where I feel hungover- really tired and terrible brain fog. I have really bad word finding difficulties and feel like I’m not really awake. On day 4 as regular as clockwork, I get the gastro symptoms. I go from having a nice flat stomach to looking like I’m about to give birth- I’m about 2 dress sizes bigger and it’s shocking how mush I swell up. I feel swollen all through my abdomen and it hurts to just live. I’m at this point at the moment- I’m in my stretchy clothes but I’m bursting out of them. This usually lasts about a day and then I start to pick up, by a week it’s usually gone.
No doughnut, pizza, beer or RUM is worth this!!
I’m so happy to have stumbled upon this website! I was diagnosed definitively with Celiac last February via endoscopy and biopsy and I was told my small intestine was severely damaged. Like others on here, my digestive symptoms did not correlate to the severe damage they found. I definitely had digestive problems which led to the eventual endoscopy and diagnosis but the other symptoms – brain fog, jitters, heart racing, attitude adjustments!, aches and pains, etc. seem to be worse for me. I did not take my diagnosis very well – I was angry and yelled at my doctor! I am Italian and live on bread and pasta and all things gluten so this was a big blow to me and I quite frankly could not understand how I have been eating those things my entire life and at age 36 got this diagnosis. It is an entire lifestyle change and takes its toll mentally. I agree with Gluten Dude’s sentiments and I, too, did not find better life or any of that other crap after my diagnosis. I was angry and am still pissed off that I cannot bite into a real piece of a pizza or a real bowl of pasta or a doughnut for the rest of my life! But I don’t of course because as others have said, it is just not worth it.
Thank you for candidly sharing what it is like to live with this. So often people think it’s just a diet fad or an “allergy” and they do not realize what a horrible disease this can really be.
Today at lunch I must have gotten glutened because I immediately started with the brain fog and jitters and now stomach cramping. So now I wait for it to pass so I can resume my normal life.
Welcome to the community. Feel free to reach out to others via the new forum I just launched. Hang in there.
http://glutendude.com/gluten-free-celiac-forum/
My skin burns!!! I first notice because I feel random needle like pokes in different places on my skin (sometimes it’s localized) and I will feel like I have a sunburn on parts of my skin. Sometimes I feel like water is on my skin when it is dry and sometimes I get digestive issues….more often lately than in the past…and my skin breaks, out mostly on my face, in this weird hive like rash and my joints feel like I’m about 90 yes old….
I was glutened yesterday. Feeling so tired and heavy. Heart was beating extremely irregularly last night, scared the crap outta me, lungs feel weak like breathing is hard work. Pain in my stomach and constipation, I feel like I need the toilet but it just won’t come out! While body is aching right now arrrggghh!
I also get the brain fog and turn into a complete bitch snapping at people for nothing, I feel sorry for my boyfriend having to put up with me when I’ve been glutened!
Why do our bodies hate us so much?
Can’t wait to feel back to myself 🙁
Hannah
Wondering how long from initial diagnosis / going GF did the brain fog and gluten a**hole take to go away? We are working thru diagnosis with my 9yo son (and hubby along the way)…he used to be such a chill kid…and for the last 2-3 years he has developed such rage. He is off wheat and dairy and it is better – but still has issues. Wondering if we need to give it more time or look closer at cross-contamination…
Hi Helen, for me I didn’t completely heal until I started to get serious about cross contamination. I was gluten free the first two years but didn’t worry about cross contamination. I look back on those years and I was better but my brain was still foggy and my anxiety and over chattiness were still really overwhelming. The last three years I’ve been really on top of the cross contamination and trying to always improve and I have truly felt like a different person! I feel so much calmer and more in control. Good luck with your son!!
My brain fog was noticibly reduced right away…that’s how I know I’ve been contaminated now. Plus I feel edgy. Your son may easily be cross contaminated
Hey there Gluten Dude!
I’ve been having some troubles with glutening myself lately, and while trying to do some research I came across this video and thought it was pretty interesting to actually know what is happeneing when you do get glutened. Hope it’s helpful for you too!
https://www.youtube.com/watch?v=nAijqLirg-4
I know I have been glutened writhin 2 hours or less. I get horrible sharp stabbing pains in my abdomen, chest and back that nothing will ease. I get so bloated I look like I’m 9 months pregnant and inflammation that causes awful pain in my lower back, hips and my shoulders. I get really irritable and become pretty stupid and can’t understand simple things. Also, the next day my back will break out with huge pimples. So gross but it happens every time. I also feel an underlying lightheadedness and get headaches on and off until I return to normal which seems to take forever. UGH!!
Thank you!! I recently found out I have NCGS. All my life I tgought it was normal to go tge batgroom after every meal. I didnt know why I got agitated and seriously moidy after a night on beer but not on wine! After reading this post and all the comments ots made me realise others suffer in the same way!Thank you Gluten Dude!!
I’ve noticed over the years since i’ve cut out gluten for good that if I get more than a taste of gluten i’ll get sick with a fever. It’s almost like a “24 hour bug”. Fever is in the triple digits with chills, achy back, skin is sensitive to the touch and painful. I have to sleep it off and take some ibuprofin. I may or may not feel “off” the next day depending on how much gluten I ate. Truly sucks. Happened to me yesterday and my brain feels cloudy and my energy is low.
I kinda get that too Jessica, your 24 hour bug analogy, it’s pretty miserable. I also have polymyositis. I think maybe the gluten instigates a riot on my muscles, which makes me very tired and feel feverish (i don’t get a fever, I just feel like I have one) Some times I get like that without gluten, so I don’t know if is the PM or the gluten. it is very complicated and complex. either way, it sucks. Hope you feel better very soon!
It depends on how much gluten I’ve accidentally consumed and when my most recent glutening was, but here’s a rough timeline:
0-1 hours – Within an hour of eating something with gluten, and sometimes even during the meal, I get acid indigestion and burping. I get severe dry mouth and dehydration. My abdomen swells up and I get bloated and pregnant looking. My stomach may burn during/soon after eating.
2-6 hours – I will feel irrational angry and my heart will race for no reason. I’m very good at calming myself in any other situation. Nothing really helps here, except letting it take its course. I also get pain in my right abdomen under my ribs. I get gassy and burpy. It feels like the food hasn’t moved from my stomach – like it is just sitting there, unable to digest.
6-24 hours – The pain in my right abdomen travels downward. It burns. I may get very constipated. I get a terrible headache with migraine aura. Pain is in the front of my head and in my face.
24-72 hours – These symptoms fade over the course of a few days. Depends on the severity.
Disclaimer: I have no official diagnosis of celiac’s. So for all I know I might have something else and/or other confounding issues. We’re still figuring this out. Trying to cut out gluten has helped immensely (night and day), but I may still get tiny amounts in by accident at times and other foods do also cause problems.
2 Options
Option 1: Consuming sufficient gluten to go over my treshold (which is like an invisible crumb from shaking someone’s hand or something as far as I can tell).
Headache and nausea in about 3-4 hours after exposure. Mental issues start with the headache (concentration problems, problems finding words, problems deviating from habit, minor motor control issues, memory problems, being hazy/dreamy, irritable, very tired). 8-12h after exposure my bowels will fully empty themselves within a few hours. Headache fades after about 12 hours. The nausea lingers for about a week. Makes it harder for me to eat anything rich in protein or fat (I tend to live of rice the first few days). The mental problems last for 3-6 weeks. My stool will start solidifying after the initial emptying with lots of extra mucus production and starts to be normal again after 1-2 weeks.
I will also get more sensitive to FODMAPs, but we’re still figuring out what’s exactly going on with that.
Option 2: consuming enough gluten to notice, but not trigger full reaction. Basically a significantly reduced version of the above symptoms with faster recovery. Stool doesn’t get to full diarrhea (bristol scale 6, not 7). If I keep eating the trigger food, I will eventually go over the limit and go into option 1. This happened with herbs that were used for seasoning (the herbs did not contain gluten, but were processed in a factory that processed gluten).
Sigh. Friends, thanks. I just read a ton of these comments and it was oddly uplifting! It’s my birthday today and I started the day running to the bathroom in the middle of the night – I literally passed out and ahem, did my business on the bathroom floor. There’s a first. Yesterday I trusted buffet food and WHAT THE HECK WAS I THINKING??! This is one of the worst GI reactions I’ve ever had. I’ve been off gluten for almost 4 years, but I think I ate, like, straight up wheat somehow yesterday and what fun it’s been. Hoping I can feel a little better this afternoon to enjoy time with my family!
Elena, you poor thing . . . live and learn right? I’d been gf for a little while, but I did the same thing on the 4th of July 15′. It will be the last gluten anything I will ever have or want!!! Hope you are feeling better by now 😎
Within about an hour of ‘being glutened’ I get a dry feeling in my mouth, burning in my throat, bloated stomach and headache accompanied by a certain dizziness as though I’ve had a few wines.
This is then followed by me escaping whichever establishment has caused the problem in order to get home or somewhere I’m comfortable to wait for the IBS like symptoms.
The next day I have brain fog and if I try to type or concentrate am likely to get a migraine.
I then have about 5 or so days of constipation as my body appears to refuse to digest food.
This happens oh too frequently despite being clear with waiting staff, chefs and managers on ordering and when food arrives if I’m suspicious. I think alot of it is down to a lack of education. I recently post glutening found out that balsamic vinegar and non gf stock cubes were used to make the soup I was assured 3 times was gluten free. Restaurants should be held accountable for the impact that their carelessness has on customers!
Meg,
I was just ranting about this yesterday! ” Restaurants should be held accountable for the impact that their carelessness has on customers!” start a petition, I will sign it!
I don’t go out; I cannot afford it in any way shape or form. If it is an all GF restaurant, then it is too costly, if it is any other restaurant, I can’t afford to get sick. The thought of it makes my breath stop.
I’m also in the undiagnosed club though I’ve been following a gluten free diet for 4 years now. Doctors refused to send me for endoscopy as my bloods were negative for celiac on 3 separate occasions. I just couldn’t take it any more and decided to try altering my diet. Tried dairy free, no change. Tried gluten free, it was like a miracle! I know when I’ve been glutened though! Had this happen when out celebrating my mums birthday only this weekend. I was told the meal I’d closed was GF but within a few hours I knew it wasn’t. I feel exhausted (like giving someone a piggy back all the time exhausted), horrid GI symptoms and feeling down and grouchy. I thought it was just me! I feel for everyone who goes through this but it is nice to know I’m now alone.
I’m also in the undiagnosed club though I’ve been following a gluten free diet for 4 years now. Doctors refused to send me for endoscopy as my bloods were negative for celiac on 3 separate occasions. I just couldn’t take it any more and decided to try altering my diet. Tried dairy free, no change. Tried gluten free, it was like a miracle! I know when I’ve been glutened though! Had this happen when out celebrating my mums birthday only this weekend. I was told the meal I’d closed was GF but within a few hours I knew it wasn’t. I feel exhausted (like giving someone a piggy back all the time exhausted), horrid GI symptoms and feeling down and grouchy. I thought it was just me! I feel for everyone who goes through this but it is nice to know I’m not alone.
Your post is word-for-word a description of my life….
Every time I think I have done something right in my life, I go ahead and eat something risky and just be exhausted and dizzy for days.
Had it happen again towards the end of my holiday this week. Luckily the GI symptoms cleared up quickly (except for the pain). I’m just tired and fed up now but back home and still got time off work so going to rest up. It’s so frustrating that no matter how careful you are, there will always be someone who doesn’t fully understand dietary requirements for people who are GF.
I love this post! Love reading the responses as well: it makes me feel less alone.
Mine is fatigue, bloating (I was glutened 3 days ago and I look 8 months pregnant right now), burping, and what feels like PMS. Makes you wonder of the asshats out there are really just celiac after all 🙂
Gluten Exposure = Repeated EXPLOSIVE diarrhea that lasts 4 and 1/2 hours.
Usually, 12-24 hours after getting into gluten, I get stomach (navel area) pain 30 minutes after I eat which lasts an hour or so and reoccurs everytime I eat, especiall if I eat protein….takes 1-2 days to get over it. I also get tremendous hunger pains, as if what I have eaten has just gone through me….though literally it has not as I get constipated almost immediately after getting into gluten. The fact that I do not have a BM that day is generally my first indicator of glutenization. ID with the weakness, irritability, etc. as well.
Thanks, all, for sharing….
Well, i’m sure i’ve copped a dose of gluten yesterday for Christmas dinner 11 different items on the plate so don’t have a scooby what’s done me but i’m pretty sure something has.
Pain either side just below the ribs, stomach bubbling away like a volcano about to erupt (god bless the people in Indonesia at the moment).
My 8yo is “supposedly” not celiac but intolerant.
Whenever she eats gluten (we avoid it, but…) she has leg pain that sometimes goes to the point of not being able to walk, and the past 2 times she threw up 3 days after….. weird. But no digestive issues. She tells me she’s also very tired.
Does anyone have issues while eating and right after? What I mean is… when I’ve been glutened, it seems as though I have a hard time swallowing the food and then about 10-15 minutes afterwards I’m hauling a** to the bathroom to puke it all up. (Sorry for the overshare)… within an hour or so afterwards, I become extremely lethargic, constant clearing my throat but also very dry throat, itchy skin, bloating, The Big D and a bad case of brain fog. It sucks! My biggest concern is why do I “get sick” immediately after being glutened? Does this happen to anyone else??? As soon as it happens, my husband and kids know I’ve been glutened.
I don’t know what is happening to me!!
I have been so sick for over a year now, I dabbled in cutting out gluten over a year ago along along with cutting out some other things but eventually introduced it all back in. That was mainly a trial for some long standing eczema which it didn’t really help with. Any way I did feel good, I have always suffered from bloating and tiredness and it definitely helped with that. Since that diet ended I have been up and down for the last year with major fatigue issues, panic attacks, hot flushed face, brain fog, headaches, I literally have felt like I am tied down trying to walk, emotional (lots of crying), not too bad on the tummy side of things but probably leaning to more of a blocked tummy if anything. I constantly thought I was getting sick but it always turned out to be the same thing. Anyway I cut out Gluten a few months ago now and it all stopped. I had until today one relapse when the tiredness hit and I felt the whole body drain again. It last a few days. Today I’m there again, it was two days ago that all of a sudden I felt off like I was getting sick and I thought maybe this time I actually have a cold but no here we go again. Going back two days ago I spent a whole day crying and emotional, I was extremely tired, I took a day off work and slept the whole day only to still be tired today. Today it has moved into my body more with aches and pains everywhere, my face is hot, I am soooo thirsty. The thing is I cannot think of anything that I ate that may have caused this. I make 99% of my own food. I haven’t eaten a meal out in ages. Especially not in the last few days. How long do these symptoms take to come on – I have no idea. The crazy thing I don’t even know that’s what it is I’m too scared to try eating some now after feeling so bad for so long. Does anyone have these type of symptoms?
i get massive anger issues, seizures, can’t think at all, worst constipation and or diarrhea ever, bloating, and rashes. and hyper