I was wondering what symptoms people get when they accidently ingest gluten? Do you always get the same symptoms, or do they change? Are they similar to the symptoms you had before you were diagnosed? How long do they last?
For me, I get the following symptoms (although not all at once), Usually they will last 2-4 days, getting milder over time.
- Extreme fatigue, but feel unable to sleep
- General feeling of being unwell - I call it the Jelly legs feeling
- Mild Nausea
- A weird "wired" feeling like I've just downed 5 espressos
- A cycle of extreme thirst followed by peeing
- Headaches (occassionally)
The are similar to the feelings that I had before diagnosis, but no where near as severe and thankfully without the racing heart that I used to get.
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Suzth
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Hiya- have to say that although I react more quickly these days to being glutened, since diagnosis & diet change 6 yrs ago, The reactions don't seem so intense or severe. Guess it's because it's usually an accidental cross contamination. Rather than a full dose..not tucking into the fresh..warm bread, from the bakery anymore : ( Or a pint of Abbot Ale...Reactions could be- full blown Asthma attack, sometimes managed at home if I used a combination of my inhalers(on 3 diff ones)plus oral steroids. If a really severe attack, Would mean paramedics/nebuliser/A&E managed. Has also meant time in resus & admission/on oxygen for anything up to 4 days. In addition have had periods of intense vomiting/diarrhoea. Or combination of all 3. Used to be scary when that happened,as was afraid I would choke. Had continual bloating, re flux type thing when bending over or lay too flat in bed. Flatulence(blushing now) Jelly legs/ palpitations- so glad you mentioned that too as Dr had put down to medication for asthma. Always felt like I was starting with the flu/ could fall asleep anywhr anytime- except at bedtime?
Reactions now- metallic taste quite quickly-about 10 mins or so. Followed by/blisters in mouth/bleeding gums. Bloating-diarrhoea or impacted bowel for anything up to a week. Most uncomfortable.. Prone to UTI's. Shakey/drained very sleepy. Coughing bouts- asthama flare up. Have arthritis & that always seems worse too for a few days after? Feels like when you'v had a hard workout at gym & muscles are buning/sore. Does that mean a Lactic acid type thing? Only been posting on this page for last few days- sorry I waffle on so much folks!...lol... But have had some food for thought replies (sorry) things my GP hadn't told me. The CD link with Lupus etc.
i am new to this and finding it quite difficult i get diarrhoea for two to three days and feel continualy tired.not enough imformation given by authoraties.
Hi, it will get easier over time, not the symptoms, but the way you cope with them and the great information that you get on sites like this one.People on here and other gf sites are very supportive and know where you are coming from if you need to rant and rave about how you feel. Stay strong!
I get a really bad head ache the runs with sickness and my glands around my kneck swell up (lymph glands) and its like having gastric flu, the only good thing is I can't stop myself from sleeping and only wake to go to the bathroom. This lasts about 24hrs and then I gradually feel better over the next couple of days.
I am very sensitive to gluten and codex wheat upsets my stomach tiny allowed levels of barley malt give me sickness, a head ache + the runs. The same happens with millet flakes and I guess that's down to cross contamination when its milled into flakes. The last time I had millet was when a prescription co changed the recipe and I didnt read the ingredients until I had been ill. They replied very politely stating codex but I felt what a waste of time and effort and thats why I stopped getting food on script and I don't care about codex I care about life beyond codex.
As for waffling on LOL I'm pretty good at that coupled with drifting off at a tangent!
If I have a whole mouthful then within a couple of hours, four at most, I will be in the bathroom vomiting to bile, diarrhea, (or both - difficult to handle!), then I go into shock, violent shaking, coldness, near-faint. All this generally accompanied by moaning!
Following this, or if a less amount of gluten is eaten, extreme fatigue, itching inside, like a knee graze might feel but inside under right rib, all-over body itch, headaches, extreme sleepiness, pain around kidney area, cramps in my back muscles, tearful/ over-emotional, really grumpy, more likely to have asthma trigger, twisting bowels like a fork of spaghetti twisting, brain fog, poor memory (am I just distracted by my guts turning over?), bloated stomach.
Generally symptoms last about 5 days, but I'm starting to wonder if there is a half-life effect to it.
As Jerry (you suggested going non-codex to me last week, Jerry!) the symptoms are there mildly even with the minimum of gluten, particularly the fatigue and brain fog. Thankfully I'm starting to see light at the end of the tunnel - as long as I have no social life and scrutinise every food I even look at!
Like Flu without the snot! Aching joints and leg muscles, malaise, extreme fatigue, feeling like cr*p, severe diarrhoea, IBS, 24 hours after - flatulence. Rash on face - itching, dry skin.
Last serious one also gave me depression.
Wife can spot it before me when I complain of extreme tiredness or "feel like been run over by a truck".
Mild attack 48 hours. Severe one 3-5 days with some symptoms running on after that.
My symptoms vary according to the type of grain I react to and the amount I get accidentally (no way would I eat it on purpose!). I used to get an upset tummy, with horrendous pain under the middle of my ribs at the front and a pain so bad between my shoulders that took my breath away for hours on end. Usually this was a reaction to wheat or wheat products but eventually I reacted to rye and oats as well. I have terrible reflux and had to try to sleep propped up on four pillows if I got it. I felt terrible.
Since I cut out all grains after my diagnosis I have much less pain on accidental ingestion of them. I still get the strange feeling in my ribs and back but the upset tummy does not last as long now. I get itching all over my body, and a rash behind my ears and on my chest and upper arms that drives me crazy. If I have a spate of reactions in a short time I feel depressed and it disturbs my sleep with night sweats.
A few times I have felt very faint and looked drunk to others...and along with this comes nausea. I had my worst reaction to two crisps I ate in a bar...had to be carried home by my husband. I think my blood pressure drops too low if I get some gluten and I react. I also react to maltodextrin and to sugar free gum...not sure what is in that but one piece kills me! I seem okay with small amounts of Barley malt , but I don't push my luck with it.
My reaction is usually the next day for some reason and I get extremely severe stomach pains, where I can't stand up or breathe properly. Nothing seems to get rid of them except sleep. It definitely knocks me out too, although lately even sleep isn't curing it. I get brain fog too and the next day am still foggy and groggy and my stomach is really sore from all the spasaming. I get a lot of headaches but I haven't worked out if it is related yet. Only been diagnosed a year and three months. I can totally relate to the feeling like I have been hit by a truck.
I get really bad stomach ache - debilitating. Sometimes but not always followed by severe diarrhoea. This is usually preceeded by a migraine. I feel exhausted but cant sleep and I feel like I have been run over by a steam roller because I ache like I have done several hard hours in the gym. I have noticed recently that I feel very down when I have been glutened for about a day and my concentration levels are really poor. I always get a bout of mouth ulcers too and some severe bloating - looking like I am 6 months pregnant - some mean feat given I am a size six with a six pack most of the time.
I was only diagnosed in July this year so five months ago. I am still getting used to the new diet usually its cross contimination now that gets me. I can usually tell within about 20 minutes that I have been glutened and my husband is now become quite savvy at noticing it too.
At first I get what feels like an adrenaline rush. My insides get jittery it feels like 1000 ants are doing a marathon through my blood stream. Then I start to get droggy. Sometimes the room spins and I can't keep my eyes open. My kids say my speech slurs and my body drags. People who are around me start freaking out. My director at school said I was mimicking a heroine addict overdosing. Then I pass out unconscious for 3 to 6 hours and wake up feeling like I have an ultimate hangover. Headache,body ache, weak tired, sluggish and spend my next day sometimes two like that.
Indigestion, bubbles & gas in the stomach, specially at night when quiet you notice the movement inside.
You feel hungry.
You eat and it doesn't satisfy you, you need more food. Food hurts your stomach and no food also (I remember I was wondering if that was an eating disorder or anxiety).
You do pu very frequently; I did pu 3 times a day, after every meal, is like if the food doesn't stay inside your body but is directly throw out.
You feel tired and low in energy.
Is nothing severe in the beginning I was given new contraceptive to see if hormones lift me up; and Buscopan when I had gases, and I was advised not to eat milk, coffee, sugar, beans the usual heavy food to digest.
My husband used to tell me I was fuzzy, and had a delicate stomach.
I asked for further investigation when I had "gastric ulcer" symptoms which nobody found; that was painful. Still the pain passed, I din't eat too much bread on my days but yes cereal in the morning, I still wasn't feeling my normal.
It is hard to remember what was your normal; but thinking in that: "it is not my normal", move me to ask for keep investigating my stomach.
Appreciate this thread. I'm giving my reactions even though most of the comments here are old. But good to keep it alive.
I'm not properly diagnosed yet, the diagnosis I've received this far is hypochondriac and depression, atopic dermatitis. I'm searching for someone who can give me answers still. Since I tried to cut grains out, I grew confident that I found the issues of my hypochondriac though. Since I'm a new person now, I don't really need a diagnosis for my own sake. But it could help the kids.
If contaminated I first begin itching. Then some areas of my skin begin to burn, turn red, shred skin, crack up as if eaten by acid. It goes quickly, fresh wounds within a couple of hours.
I get headache, jointpain everywhere, abdominal pain and lower backpain, feels like something is pinching my guts, sometimes stabbing. Im freezing, become extremely tired, feeling absent, and difficulties walking properly, bad hearing and difficulties focusing sight, like anguish in my body and mind, I become angry with no patience at all. Bloat, pee all the time, thirsty. I hope I won't react like this later on. It lasts for approximately 48 hours before it slowly starts fading away. After 4-5 days it's mostly back to "normal" except rashes that takes a couple of weeks to heal.
All of above became my normal state before going gluten free, except that I have different stomach pain now.
I've always been bloating, and felt as if my stomach got locked up trying to keep away from vomiting. Had issues with skin, always my lips.. but other areas too. Sometimes all covered up. I realize looking in the mirror thar I've always been tired too, hence sleeping more than average. I used to have ache in my feet(esp heels) calves and sometimes hips. Always been tremendously thirsty, I could drink from anywhere, peeing atleast every other hour. Constipated, stool two times a week. A sense of not being present, like put in a compartment in the back of my head. I could faint once in a while. Got tested for diabetes on others demand a couple of three times.
I sought help for mostly lower backpain a lot as a teenager and young adult. But it was normal, so I learned to live with it. My menstrual cramps as teenager made giving birth later on ridiculously easy. Severe Pms.
Around 20 I got pimples, and had them until recently (nearly 20 years).
Around 25 my brain stopped working as it used to, feeling lost, forgetting words, making up new words, forgetting dates and days.
I had tinnitus, got permanent rashes on some area (atopic diagnosis). Couldn't always make out the words people spoke.
Then I grew tired. Extremely tried. Everything became an effort. I realized I had to cut down exercise because I partly lost vision if I got exhausted, almost as if I was to faint. Eventually no exercise. Then I slept for 16 hours a day, barely able to stand up (got diagnosis depression and hypochondriac around 29) I couldn't eat anti depressives, coz I threw them up and began shaking for hours, so badly that I couldn't manage to move my legs, I joked and said they gave me severe Parkinson's disease.
I begun stuffing myself with vitamins and minerals, and eventually came back to 10 hours sleep.
But I was unable to focus. Got tired eyes, needed to rest my head in corners wherever I was. Shaking my body on purpose to get rid of the weird feeling in my joints. Couldn't focus on people talking at all.. begun to get a horrible pain in neck, head and left arm. Tried to get rid of it with bonecrackers help, then demanded my tooth to be taken out coz I assumed it was the reason it felt my skull was cracking in half, together with eczema and inflammation in ear.
And I began vomiting once in a while. Pms got even wors, I could snap at anyone anywhere, irregular menstruation. More Severe backpain and abdominal pain, like menstrual cramps for more than two weeks. Like giving birth a few times a month.
Then I was demanded to see a doctor by family, doctor claimed it was all normal and hinted about hypochondriac.
Eventually the pain in neck and arm spread all over the body, making it unbearable. I cried all the time trying to figure out how to say goodbye to my family and how to leave the body behind in the best way.
But I thought that perhaps I should try going gluten free on my own first, since I had always felt sick after eating wheat and had relatives with celiac disease.
It only took a about 72 hours before the pain begun to ease. Eventually all my hypochondriac symptoms vanished, and it wasn't until I accidentally ate gluten that I realized how ill I had been, seeing all those symptoms in a different light.. Like how it was not a normal state to sleep ten hours, or feeling absent.
Hi Suit, many of us were made to feel neurotic until diagnosis and it seems to take ages for the penny too drop that its an autoimmune issue, ingesting a toxin like gluten is very stressful on us (coeliac) and our bodies so some Dr's think its neurosis...😱
If it works for you then stick to it and you're not alone in your feelings.
Yes, it seems like hardly anyone is taken seriously for many years. Which is a shame because we throw away years of our lives. How many are still unaware that gluten is the reason behind their sicknesses?
Some are worse off than me.
I'm gonna try to find a way to heal my brain, know of any short cuts?
I can handle that disappointment though, it's just emotional. I love your post though, it's easier to deal with the emotional part knowing that you're not the only one.
But I actually meant real damage to the brain, dunno if it's related, but I've felt an impairment for ages.. used to blame that tiredness and so. But it does feel as if my brain is breathing once again. And I hope that it'll recover properly.. but I'm not sure. Its like I have limited access to it, sort of. Memory loss, forgetting words, dates, times... how to reach information stored in my brain.. I used to have an inbuilt really sharp GPS, always had a sense of direction and was always correct.. in any city, or in any forest.. nowadays I can even feel lost in my own town. No sense of direction. It's scary. It's scary to find that things I could do with ease is nearly impossible to figure out now.. Its as if I twist my brain in search for the answers so hard that it starts to hurt. I know the information ought to be there, it's just out of reach.. this applies to things concerning math and stuff for example.
That's what's hardest to accept, and something I don't mention to people.. yet.
But the fact that I could with ease pick out all pieces from an old broken watch and make it work as a child, but cannot seem to figure out easier things today is extremely frightening. Simple things like not being able to tell by myself that the reason I couldn't see how much something cost was because someone had opened the "lid" to the shelf. Sometimes not even figuring out if the price is per piece or kilogram. Actual happenings lately.
I think I might be able to recover somewhat anyways. Maybe not all of it. Know any shortcuts?
I,have crushing fatigue, so extreme I just don't want to do anything. My tummy bloats and is uncomfortable, including to the touch. My joints ache, particularly handle, wrists, feet and ankles.
Generally I feel under the weather for about 4 days, then my body gets rid of the cannon ball in my tummy - rapidly.
It takes about 3 weeks for me to feel "normal" again.
Frustratingly, I was glutened the other evening, in a restaurant, where I chose poorly. Where I am now has no requirement to list allergens, so it add an additional frisson to dining out!
I have a 13 hour flight on Monday and by my reckoning, I may need a bathroom of my own.
Suit, I try to look after myself as well as I can, but in this life, nobody gets to the end game without the odd mistake. We just have to do our best, and slap on a smile when a tantrum might better match the internalised scream.
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I think I am having issues tolerating lactose again. Does anyone get any symptoms besides bloating and a dodgy stomach? If so what?
Real dilemma. What would you do? 
What do you all eat.....
Going gluten free, what was the first couple of weeks like for you? 
What is your dynamite? - The one thing that ALWAYS leaves you doubled up with the rot!!