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?