What Does It Feel Like When You Are Glutened Or Reacting?

I saw this post from Jane recently where she described how her symptoms come on and progress when she accidentally ingests gluten. I recognise most of it, do you? And, of course, it doesn’t just have to be gluten; it could be anything you are reacting to, especially the cross-reactive gluten foods which will give you the same response as your body thinks it sees gluten.

In essence, we are all different but I would assume, like Jane, fatigue and brain shut-down are always a part of it. She suffers from extreme thirst as her first clue, then that horrid crushing tiredness that I know many of us get, when you just want to lie down and go to sleep, then hers progresses into other areas like joint pain, blurred vision, migraine and digestive upset. She calls it ‘full body flu’ and I would say that is about right!

I was also interested to see that her skin problems used to start exactly 22 hours later and so she could always work back and see what caused the problem. Now she is much better, it no longer is as exact so it is more difficult to tell. I haven’t heard anyone else say that, but I certainly have that exact timing thing with my migraines, although mine starts on 2 hours and 48 hours later on the button, it just stops. Fascinating!

So, what is your pattern? Mine goes like this mostly, although it does vary depending on what the exposure was:

The first clue is that I start drinking water. I have only just caught myself doing this as I drink lots of water anyway (pretty much my only drink nowadays!) but I start to want more of it. Then, I get incredibly hungry and feel my blood sugar plummet. At that point, I could kill for chocolate. If I could have it! Currently, if I don’t get a handful of dried cranberries into my gob within seconds, I feel incredibly sick. This has happened for years, even when I was in the clinic and P had to feed me chocolate. I made an excuse to go out of the clinic room before I keeled over on my patient (!), P would give me Green & Blacks chocolate from the reception draw and I could go back in almost immediately and be fine. Mad. Must have been an early indicator. My blood sugar has always been up the swanny due to the PCOS so I never took much notice and just got on with it. Well, you do, don’t you?

Next, I feel extremely tired, start massaging my neck and noticing that I can’t see the screen very well. I feel wobbly, sort of trying to prop myself up at my desk by shoving cushions behind me.  Then, literally 2 hours after the exposure, the migraine starts and I am then done for at least for the next 24 hours. In that 24 hours, I feel like someone is inside my head trying to push one of my eyes out; it varies from right to left migraine each time, no idea why. I have to lie down in a dark room or I just have to keep closing my eyes. It feels like my sinus bones swell and throb. Not nice.

I can’t really think straight at all during that time. I’m dizzy, listing all over the place, hanging onto the stair banisters, am nauseous and have to stay still to keep a semblance of control. Oh, to be able to take some drugs but since they all have corn in, I just have to cope. The bum drugs paracetamol do help take the edge off sometimes but they can cause me to feel more nauseous so I try not to. The migraine used to score about a 8-10 on pain level and now I would say a bad one is about 6 and most are about 4 so some progress happily. Four is still flippin awful though and I wouldn’t give one to my worst enemy, if I had one.

Other stuff then goes on and this varies. It could be skin stuff comes up on my legs – tiny but flippin sore painful bumps on the hair follicles. My tongue swells and sometimes my oesophagus. That’s horrid because you want to lie down but your swollen oesophagus pushes onto your windpipe and you feel like you’re being garrotted (is that the right word? You know what I mean anyway.) Doesn’t make for good rest as I spend most of the time trying to breathe. Thankfully, this doesn’t happen as often now. My ear might start itching and releasing fluid or blood, my legs can’t keep still, my gums swell and my mouth hurts, I might have my back muscles, neck, arms, hands or even internal muscles go into painful spasm. Sometimes I have to type standing up, if you know what I mean! I can get whole body itching especially at night. I get very hot or very cold. P says I become Finnish as I like to stand outside in the cold wrapped in a duvet! It helps somehow 😉

This all goes on for about 48 hours, although some of the minor stuff stays around for 3-4 days. When I look in my diary, my scores tell me that an average first day now is about 3-4 on the Richter symptom scale where it used to be very much higher. The second day averages 1-2 so is much more copable. The migraine is certainly much less now on the second day where I used to have pain for 4-5 days. How the heck did I cope with that?!! By day 3, I am usually back to 0.5-1. It is rare to get one of the elusive zero days but I do have them. Usually followed by a 4 day because I have then overdone the wine celebrating! Must stop that cycle…

Blimey, reading that, it’s a wonder I ever get anything done, isn’t it? No doctor would believe you, would they? 

So, that’s what happens to me. What happens to you? Is it similar or not?




3 thoughts on “What Does It Feel Like When You Are Glutened Or Reacting?

  1. Ah well, there are different reactions. There are the very quick, very fast anaphylactic reactions. For me these happen usually anything from 45 mins to 2 hours after eating the wrong thing. It starts like feeling I have a VERY bad head cold, very snotty and struggling to breath. Then I notice my face, eyes, nose closes up, throat begins to swell shut and it hurts so bad it feels like something is closing around it, tighening and tighening. I can’t even speak when throat and tongue swell that badly. I croak and wheeze. Hives creep over my whole busy and I am so itchy I could rip my arms and legs off to stop the itch. I scratch like crazy and get hard, itchy prurigo lumps which stay on my arms, shoulders and back for weeks, sometimes months before healing. They itch worse than anything else on this earth.

    The anaphylaxis has nearly always been triggered by exercise after eating the food, even just walking will start off a much worse reaction.

    When it’s the slow ‘mild’ reaction or ‘intolerance’ reaction it wakes me up in the early hours, my head will be splitting open, liquid ooozes out, it’s like my head is no fire and if I don’t wake UpI do massive damage to my scalp. If I wake, I get up, drink water, cool my head down, take an antihistamine and I can usually get back to sleep. My eyes also itch like mad and I rub and rub and rub them. I often have constant weeping eyse after a mild reaction. And the skin on my face comes up like it’s been burnt. It feels like it’s been burnt too. In summer people actually think I’ve been sunburnt, when it’s just food burning out through my skin. This lasts for about 3-4 days before my skin starts to settle down, the reddness recedes and then it’s dry and flaky and I can perhaps get some sleep again. It is exhausting haivng all this stuff going on at once while trying to function, work, cook, sleep, be a friend etc. etc…

    Then there is soya, which just makes me wheeze instantly so badly I have had to go to A&E a few times.

    • Ugh Ruth, yes the anaphylactic ones sound really scary.And agree: exhausting it certainly is. I really wonder sometimes what must it be like to actually have real energy like ‘normal’ people do?! I remember a couple of years back just after I had given up the grains, I rang my sister in complete excitement and said ‘this must be what it’s like to feel normal!’ as I felt so different. Of course, now I want the next step up purlease…!

  2. I identify with a lot of your symptoms Micki. I’m keeping a symptom diary in readiness for my next appointment with the allergist, although he pointed out to me he’s really only interested in reactions that happen within the hour!

    So my list of symptoms in order of frequency so far include:
    Heat patches on head, muscle pain, throat constriction (probably what you are calling Oseophagus swelling), Headache (more when I’ve eaten wheat), burning knees (!), extreme tiredness, stomach pain (more when I’ve eaten wheat I think), post nasal drip, cataarh, nanobots (what I call the feeling of something crawling and pinching me all over internally!), yeasty feeling, weakness, toxic feeling all over, lightheadedness, runny nose, muscle spasms, burping, tickly throat, brain fog, constantly bloated, itchy nipples(!), eye flea(!), diarrhea, breathless, slurred words, shiver across the back, pain in torso, nausea, kidney/adrenal pain, heartburn and only in the last week slightly blurred vision and burning feeling under the eyes.

    I think that’s plenty! I’ve also had a muscle pain under my right arm since last May which nobody including physio seem to know what to do with to make it better. I’m not sure if it’s connected but I never know these days.

    It seems bizarre that only two months ago I was living a very normal life and and now it’s been taken over with the most bizarre feelings that nobody, but those who are experiencing the same thing, could ever possibly understand.

    I hope some of you may identify with these and I wish you all the luck in managing them in the best way you can. I’m practising mind over matter and hoping that one day this may all be over!

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