In August, I wrote this blog about the chronic, daily gastro issues I was having and how I was at a bit of a dead end working out what was going on. I asked people to share it on social media and I had an amazing response- thank you so much to everyone who took the time to read it or comment on it. I’m not very quick at sifting through information but I read through links, journals, and some books people suggested, as well as watching some documentaries recommended by others. I also talked to some other people through my blog, email and social media and I learnt a lot from their experiences too! So I thought I’d write an update to explain where I’m at with it at the moment.
Firstly, I don’t have daily diarrhoea anymore! I still get it, but nowhere near as bad. I can live with that! Although I haven’t been on my baseline of steroids for ages either so it could come back. My issues are far from cured though, so if reading this makes anyone think of anything, please let me know!
I’d kind of dismissed the idea that I had food intolerances I hadn’t worked out yet – I’d already cut out gluten, chicken, pork and a couple of other random things based on an intolerance test and my own experiments. But after reading some of the articles and books people suggested, I realised that allergies and intolerances are very complicated things. For one thing, you can be intolerant to something and not have gastric issues, it can manifest as pain, skin conditions, inflammation… You can also be intolerant to something slightly and not even realise it and a test won’t pick that up. But the gut, well the whole digestive system, is seriously undervalued, I’ve learnt, in that it’s constantly sifting through stuff you eat and converting it and sending it to relevant bits of the body. It’s gross, but very clever!
So if you think about how much ‘time is spent’ with the food in terms of contact hours, the gut can spend up to a day ‘touching’ something. Which if you had a skin allergy to touching peanuts, you’d see the skin respond straight away. Hold that peanut there for 24 hours and the person would be really ill, even if they were only ‘a bit’ intolerant. So you can be just a bit intolerant to something but because that thing has to travel miles in your gut, that’s a lot of contact time.
I’d not taken into account any further intolerances or allergies to things I was eating because I was focusing too much on the gastric symptoms. I can usually feel while I’m eating something if it’s going to come straight back out, which doctors told me was more psychological than anything else because the body isn’t supposed to work that fast. And I’d done an intolerance test and cut those out and sometimes I could eat stuff absolutely fine and sometimes I’d have gastric issues. It seemed random. And I also did some carefully controlled experiments where I ate the exact same thing, in precise quantities, at the same time every day and some days I’d be fine and some days I wouldn’t. If it was an intolerance to food, then it would do it every time, surely?
The gastro doctor said that I have IBS, which I probably do. But something still wasn’t sitting right with it being that by itself. I’ve been telling doctors for about 18 months that it doesn’t always feel like IBS or a response to something I’ve eaten. Sometimes it does, but some things definitely make it worse which aren’t linked to what I’ve eaten eg climbing stairs or having a shower would make it worse. Lying down improved it. I kept saying I thought it was linked to my heart rate or endocrine system somehow because it tended to coincide with when I felt low cortisol-y. And then there was also that cardiologist I saw who said he thought my high heart rate was in response to something else going on that was unmanaged, which kind of fitted with what I’d been saying. There’s something else going on that everyone is missing. Plus it would improve fast with extra steroids. When I told the doctors that on a week long hospital admission, they started looking into inflammatory bowel diseases like Crohn’s, but many invasive scans and tests later, they didn’t find anything. But it was still all a bit weird and everyone was a bit stuck.
I’d always assumed that I didn’t have autoimmune causes behind my adrenal insufficiency. Because that’s what my doctors told me and I have a pretty good immune system. However, a bit of research and going back through my test results, no one has actually tested it, they just made the assumption, and having a good immune system doesn’t mean you don’t have something autoimmune. And my doctors have been very wrong on many occasions. I don’t have any allergies which give me anaphylaxis, but I *have* had some strange reactions to things. I had a seizure once when taking prescribed medication. I get regular rashes for no reason, my asthma gets set off by things that other people can’t feel or smell in the air at all and I’m in constant pain and itch permanently unless I take antihistamines all year round. All of which could be because my body is responding to an allergen. I’d already spent the last year working out which foods made my heart rate increase, or gave me a headache or set off my reactive hypoglycaemia. But because I’d always thought that allergy meant skin rash or anaphylaxis and intolerance meant upset stomach, I hadn’t associated these symptoms with allergies or intolerances, I just thought it was another example of my body being weird.
Coincidentally, if you look at extreme allergy disorders which do have anaphylaxis (eg MCAS), I actually already take most of the medications recommended. I wasn’t put on them all at the same time, but over the years they’ve been added in, usually to treat my asthma. I clearly don’t have severe allergies to anything, but what if I do have many different little allergies presenting in slightly different ways?
But I’d had extensive allergy testing at the brittle asthma clinic. And I’d been tested for ceoliacs and other things and not an awful lot had come up. But then I read that allergy testing is a bit sketchy anyway and I know from experience I have lots of blood work that says I’m ‘fine’ and then later on we discover it really wasn’t fine. I kind of shelved it for a while until two things happened in one week. The first thing blew my mind slightly. A lady I’d found through Twitter told me about how she’d read a case where a girl was allergic to a VOC and hadn’t realised. That VOC was used in her hairspray and also in the process of freeze drying peas. So she could eat fresh peas fine, but frozen peas were a problem. And she vomited after using hairspray. But cut out the VOC and her symptoms improved. How on Earth she worked that out I don’t know, it really sounded like an episode of House. I also watched a programme called Diagnosis on Netflix where a girl reached out globally for input via social media because she had debilitating symptoms which hospitalised her but no one could figure it out. Turns out she had a rare metabolic disorder where her body doesn’t produce 1 tiny enzyme and that means it can’t break down fat properly. So all she had to do was eat more sugar and less fat and her symptoms improved. It seems simple and obvious when you know, but you have to know what you’re looking for.
This got me thinking. I’ve got reactive hypoglycaemia and it gets triggered by foods that should be ‘safe’. I feel hungry all the time, but I decided a while ago that I’m not actually hungry, my body tells me it’s hungry so that I keep eating because it’s lacking something and it wants me to accidentally eat the thing it wants. Maybe I needed to revisit the food thing more carefully, but not just what I was eating, *how* it’s prepared. And also think about any environmental things that I might react to.
In seeing me and the lady on twitter talk about random intolerances/allergies, another person, who also has adrenal insufficiency, said that they’d had lots of issues eating some foods when they were on oral hydrocortisone, but now they were on the pump and coverage was more consistent, they could actually eat some stuff they were intolerant to. So being on a ‘better’ level of steroids means intolerances improve? Which would make sense with me because I said all along that steroids improved my symptoms really fast.
But things still weren’t matching up. And I had no idea where to start. Then I had a bit of a brainwave when I was brushing my teeth one night. I know I’m intolerant to wheat, I’ve got a test result that says that and I felt better since cutting it out. BUT whenever I felt terrible, my go to food was carbs with wheat, but salt and vinegar pringles specifically. Which have a lot of wheat in. However, I always felt better almost immediately as soon as I started eating them. Likewise if I ate bread. This was one of the things that doctors said ‘couldn’t happen’ even though I could back it up with my blood sugar changing 2-3 points in the space of minutes- they just said my metre was dodgy. But I’m intolerant to wheat.
So I tried to work out what happens chemically when you’re intolerant to something but not in anaphylaxis. And would anything that happened there be able to make me feel better temporarily, and change my symptoms and blood sugar fast? Do you make adrenaline? A bit more research said yes, you do. Whenever you make adrenaline, your body’s supposed to back it up with cortisol, which I obviously don’t. So what if eating something I’m intolerant to makes a whole load of adrenaline, which *does* have very fast reactions on things like heart rate and blood sugar, which makes me feel better in the short term but later on causes me problems when I don’t have the cortisol to back it up? Because then I’d be in a cycle of eating something bad for me, my body thinking it’s being poisoned, making lots of adrenaline, not making the cortisol, so I get lots of low cortisol symptoms and then end up eating the thing that makes me feel ‘better’, which starts the process again.
Now if that’s possible, I started thinking about what else makes me feel better almost instantly after I start eating it? Cheese. Cheese is another one of my go to foods. If I apply the same theory as I was with wheat then maybe cheese is also just a temporary fix. I thought ‘what the hell’ and cut out dairy overnight. And in doing so, I could taper my steroids to the lowest they’d been in a while and not have the gastric issues come back. In fact, I noticed I had less pain, my heart wasn’t doing it’s funny beat things as much and I generally felt slightly less sick all the time.
You might be thinking ‘you’re such an idiot, how did you not notice that something was making your symptoms worse?’. Which is reasonable! But I feel terrible all the time. And by terrible I mean there isn’t a point at any part of the day where I don’t have to work hard to keep upright and breathing. So eating something that I’m intolerant to doesn’t make a lot of difference, it just continues the terrible feeling. But removing things means I get a bit of reprieve from some of the symptoms. And many slight improvements start to make a bigger overall improvement to my quality of life.
Plus it’s not as simple as ‘don’t eat X’ with me. Some days I’d be fine and others I wouldn’t. Remember how it gets better if I take more steroids? The doses are designed to try to replicate what a ‘normal’ person’s body does cortisol wise, but it’s not an exact science and has serious flaws. If I ate a piece of cheese at the same time as my steroids, I’d probably be fine because the steroids would compensate for the cheese. But if I ate the same amount of cheese before my steroids were due, that would give me big problems. And then you have to take into consideration all the other cortisol draining things that happen in the day- getting annoyed about something, walking around, not having slept well, being ill, just generally having a bad day…
I don’t have confirmation that my science is right but I’ve run it past a few medical friends and they say it’s plausible. But ultimately I was right. It *was* an endocrine thing. By accidentally eating things I’m intolerant to, it wasn’t directly giving me gastric symptoms, but it was making my body react as though it had been poisoned, increasing my heart rate, pumping out adrenaline, changing my blood sugar, and then getting diarrhoea as a consequence. Which then lowered my cortisol even more. But when I took extra steroids, my body was able to cope with the ‘poison’ better, which is why it made it stop so quickly. Whatever the science is, not eating dairy and gluten is helping so I’m sticking with it!
I don’t feel like I’ve solved anything yet though. I’m still very debilitated by my symptoms but I feel like I’m working stuff out. Now that my body isn’t permanently making adrenaline or in fight or flight mode, I can now feel adrenaline rushes if I eat something I’m intolerant to. Which is helping me work out other things- eggs for example is one I’m experimenting with. But, because cortisol is ever changing and I spend half my life trying to taper steroids, just because I ‘test’ something on one dose, doesn’t mean I’ll have the same result on a different one. So progress is slow. And I don’t think I’ve even remotely started looking at all the possibilities properly!
Thanks for reading this rather long blog. As before, feel free to share or comment with any ideas! 🙂