When life’s an experiment

For the last couple of years, my life has been one giant experiment. Since getting a diagnosis, the experiment has at least been somewhat focused. When you don’t even know what the problem is, finding a solution is next to impossible. In fact, for most of the years prior to getting a diagnosis, I don’t think I really even bothered to look for solutions outside of my GP’s office. I think we live in a society where the doctor is assumed to have the answer to everything. If you’re sick, they’ll do a test, tell you what’s wrong, and give you a pill to fix it. Putting so much faith in medicine’s ability to fix it means that if medicine can’t fix it, life feels pretty grim. Where do you go from there? If the doctor doesn’t know, who the hell does know?

It was probably just over a year ago that something changed. I spent several months being sicker than I’d ever been, and my mindset changed. This couldn’t just be it. This couldn’t be what the rest of my life was destined to be like. If the doctors didn’t know, I’d at least try and work it out myself. It was at that point that I started looking for possibilities outside of medicine. Nutrition and wellbeing became a large focus of my efforts. Coming from a science background, I think making the transition away from medicine was hard for me. A lot of ‘alternative’ (which I now know is really just a word for ‘not funded by the drug industry’) treatments are really scoffed at by people in the medical community, and I was surrounded by that community both in my professional and personal life.

At this time a year or so ago, I read a lot about food intolerances contributing to chronic illness, and I decided to get tested. There are a LOT of nonsense food intolerance tests out there. And this is where it gets tricky – trying to tease out the sensible from the stupid. But I found a blood test that detects antibodies to certain foods and food components, and I was happy with the science behind it, so I went for it. It showed that my immune system was reacting to gluten and dairy, so I eliminated both completely. It’s hard to know exactly how much of an effect that had. Ultimately, I was still sick. I still had the usual symptoms of EBV. But there was a definite improvement in my fatigue and some other weird symptoms that I’d never really even th0ught about. I used to get really severe mouth ulcers. I almost always had at least one mouth ulcer and anything up to 15 at once. They were so horribly painful that I dreaded anyone speaking to me, knowing that the pain of talking back would be unbearable. I also used to get a rash called folliculitis, inflammation of the hair follicles, on my chest. When I cut out gluten and dairy, both of these things improved significantly.

Gluten has been permanently removed from my life ever since, and I don’t really miss it. You can get gluten-free everything these days. But last Christmas, I was craving cheese. Dairy felt much harder than gluten because there aren’t the same dairy substitutes, unless you want to consume soy all day long. So I reintroduced some dairy, starting with cheese, then butter, then yoghurt, and finally, a couple of weeks ago – milk. I went for organic whole milk thinking it was least likely to cause upset. For the last two weeks, my mouth ulcers have come back with a vengeance. Just as one starts to heal, another one rears its ugly head. God I hate those things. And that weird little rash has started to creep back in too.

So, it is with much sadness, that dairy has been booted out the door again. When I think about it, I don’t really agree with eating dairy anyway. I believe that cow booby-milk was designed to be fed to baby cows, not adult humans. It kind of makes sense to me that a lot of people might have problems with dairy, because I just don’t think we’re designed to consume it. But alas, there’s no denying that having a big dollop of clotted cream on your strawberries just ticks an awful lot of boxes. Eating out becomes tricky too – most places cater for gluten free, and a lot are ok with dairy free too, but somehow when you ask about both, you get an ‘oh-she’s-one-of-those‘ eye roll.

Of course, if it helps me become ulcer-free once more, it’s a small price to pay. But that’s the trouble with this god damn experiment. It’s just that – an experiment. I really have no idea if dairy is the issue here. It’s a stab in the dark based on a rough correlation I think I’ve seen. But who really knows? There are so many factors at play at any given moment that it could be anything. And honestly, when the uncertainty and potential risks of every single life choice, down to whether to have whole milk or soya on my granola this morning, are so huge, life feels a little depressing.

5 thoughts on “When life’s an experiment

  1. How incredible you were able to connect your intolerances so directly to symptoms. As you know I’m intolerant to wheat yet only if I eat it first thing do I get an upset stomach, equally to dairy but I avoid it and now I only get bloated if I eat it. The most interesting and clear cut to symptoms has been sugar… My moods soar and drop like a sugar rush when I eat it and I have noticed I get headaches now too.. Weirdly I also get thrush like symptoms but have been tested and have nothing which should cause the symptoms… I cut out sugar and I get better. Sugar is obviously not good for us anyway but amazing how much it alters my mood and how light and free I feel when I don’t eat it. Fruit is my sweetness now and I’ve found many ways to substitute in baking and for puddings eg avo, date, banana and strawberry ‘nice-cream’… Freeze all fruits and blend into sorbets! Yum x

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    • Thanks for your comment miss dukes. I only notice the links when I give things up and notice improvements. Unfortunately my symptoms are so broad and so frequent that I can’t notice things making my symptoms worse at the time, only that they improve later. I’m hoping that will be the case on my new no dairy quest, but I’ve given up lots of things that have made no difference whatsoever, so it’s hit and miss.
      I get frustrated with the sheer volume of information and possibly things that could affect me, because it’s hard to know where to even begin sometimes.
      Sugar definitely affects me too and is particularly bad for PCOS which I also have. Interestingly I’ve heard of it being linked to yeast infections before; something to do with how it affects your gut bacteria, I think.
      Interesting, albeit frustrating, stuff. Thanks for sharing 😊 Xx

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  2. Have you tried A2 milk? I’ve read a few things about it lately and just wondered if worth trying.
    I tend to have goats milk as supposedly a goat has one stomach like us but cows have 4 … Thus causing humans problems!

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    • Thanks, I did try goats milk for a while after reading the same thing, and I’ve also heard of A2 milk but never tried. For now I want to cut it out completely to see if it helps and if it does I may try A2 or goats. Thank you 😊 x

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  3. Hi,
    This is the first time I’ve read your blog and I think you’re brave for putting your thoughts about your illness out there. It’s inspiring. Reading about how other people cope with a chronic and incurable illness helps me deal with mine. I have idiopathic sensory neuropathy putatively associated with my coeliac disease. I also have autoimmune thyroiditis, hypothyroidism and osteoarthritis. I seem to be a vehicle for autoimmune disorders! I started a blog a couple of years ago but I lost courage. Maybe I will resurrect it 😀

    About food: having altered my lifestyle to aid my coeliac for nearly 10 years, I’ve had a lot of practice in observing the effects of diet. Of course, the gluten-related symptoms disappeared overnight after commencing a gluten-free diet and I’ve never looked back. I am highly sensitive to gluten and cannot tolerate oats, even gluten-free ones. In addition, after the first year or so, I slowly became vegetarian and then a “flexible” vegan, mostly because I’m sentimental about animals (although strangely not molluscs, which I eat with relish). I must sadly point out that being meat-, dairy- and gluten-free has been of zero benefit to my neuropathy and other illnesses (except the coeliac). A friend of mine has Crohn’s. The ulcers that he had in his mouth and tract were practically 100% cured by going vegan. Interesting.

    Do you like any of the non-dairy milks? My favourite is the unroasted, unsweetened almond milk. But, it’s expensive. I live near a Lidl where unsweetened soy milk is 59p: hard to not opt for!

    I hope that one day soon the medical community work out what causes peripheral neuropathy and why it worsens over time and never stops in its “attack”. I also hope the same for EBV, fibromyalgia, MS, CMT and others …

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