The Odyssey of Getting Well

By Madeleine 7 years ago12 Comments
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Damn. It’s been close to two years since I last wrote on here. If you’re one of the few people who come back to my site once in a while, you have surely noticed that I’d changed the web design for the site. You see I’m trying. My excuse is, life got in the way – and not the kind on the sunny side.

The Medical Machinery

Back then, I’d started trying to get appointments with doctors to find the source of my health issues. Before it got better, it got considerably worse. Doctors didn’t really care, treated my like a hypochondriac or as if I had an eating disorder. Most of their advice later turned out to be horribly wrong, which led to things worsening. Going by how you’d troubleshoot a technological issue, they went about it all wrong. As soon as they’d heard I had psoriasis, they only looked for another autoimmune disease (AID). Nothing else. I had to have a chest x-ray, because one doctor thought I had one AID that would show up there, while I tried telling him that my lungs were fine. Unlike so many other things in my body. It was ridiculous.

Every doctor I saw generally just passed me off to another specialist after weeks of waiting. Luckily, a student of mine is a paediatrician and offered help. He took more than an hour to listen to all my symptoms and what other doctors had already checked. After that, he looked at medical books to finally send me a list of all the tests I should get. In the meantime, I continued reading any study I could get my hands on that had to do with digestive issues, autoimmune diseases, allergies and migraines.

Medical Fasting

In March 2016, I spent 11 days in a naturopathic hospital in Berlin that specialises in systemic illnesses. They ask most people to fast there – either juice fasting or gruel fasting. The problem was, I was allergic to a lot of their juices, and seemed intolerant to the gruels. I’d just painstakingly regained my weight, and being left with just the gruel of flaxseed (perhaps 50 calories a day) for about a week was scary. I did it anyways, because by that time any food I ate seemed to disagree with me, sending me running to the toilet up to 20 times a day. Imagine being afraid of eating.

I lost the most weight during fasting, my blood pressure dropped quite badly. I made a stink to get them to have a colonoscopy and endoscopy done, while my digestive tract was inactive, as they were going to give me a diagnosis at the end without any idea what was wrong with me. After the endoscopy I got the diagnosis from the other hospital that I supposedly have lymphocytic? colitis. When I looked it up, it basically says that my body was trying to repair the intestinal mucosa. No shit, Sherlock. That’s one of the positive effects of fasting. The naturopathic hospital diagnosed me with IBS – another “we don’t have a clue what’s wrong with you” kind of diagnosis, one that only works by excluding everything else, which I thought they hadn’t, as no doctor had agreed to do a food intolerance test.

The Diagnosis

Once I started eating again, I noticed much better which foods didn’t agree with me, so I cut them out. Still my digestion was going into the direction of diarrhea again. I found a new general practicioner, and she agreed to do histamine and IgG3  intolerance tests. They’re not covered by health insurance here, so I don’t get why so many doctors refused to do them. The first one came back negative, the latter with me being intolerant to 32 out 44 foods. The kicker? Five of the left over foods were meat, and I’d been a vegetarian since my teens. So out of that list, I had seven (!) foods left. My doctor was visibly shocked and told me, she’d never seen such a bad result.

Charlie’s version of yoga

By then, I’d read so many studies on health and nutrition, and since I was most intolerant to dairy and eggs, I went vegan and slowly transitioned to whole food plant based (WFPB) – which means no processed foods (easy with so many intolerances), no added sugar incl. honey or syrups, no oils.

I also figured out why I’d gotten all these intolerances. The whole thing started 15 years ago, when I got a urinary tract infection and the internist gave my at least five rounds of broadband antibiotics without checking for the source of the infection or why it didn’t get better. Back then, I was very sick, had no energy, in hindsight definitely had various nutritional deficiencies due to malabsorption, same as I did this time around. No one believed me back then either, but it somehow got somewhat better again when I cut out sugar and refined grains. My digestion never went back to normal after this though.

Antibiotics kill not just bad bacteria, but the good ones in our gut, too. Scientists only started researching the gut flora around 2000. All the studies in this area on autoimmune diseases show that certain strains of bacteria missing seem to activate the disease. 80% of our immune system is in the gut. If your gut health isn’t good, you’ll get sick quicker, more often and more severely. Almost each time, I was given more antibiotics. Some strains of gut bacteria seem to help keep the intestinal mucosa intact. Those were missing in me, so the mucosa became more and more permeable over time, until I’d have eventually bled out. Generally, only nutrients can pass, but in my case, food particles could pass as well, which the body reacted to by building antibodies – hence more and more intolerances over time. My first one I’d developed after the many courses of antibiotics.

The Long and Winded Road to Recovery

So I cut out all the foods, researched where I could get more exotic fruits, veggies and grains, since I also had to do a rotation diet. This meant, that if I ate tomatoes today, I could only eat them again in a couple of days. To avoid getting new intolerances. This was the reason I got sicker at the end of my time in Mauritius, as I seemed to react to so many foods then, that I barely had variety.

I’ve recently abandoned the rotation diet and it appears to be fine. The first, light intolerances I got rid off again within six weeks. Gluten, to which I’m strongly intolerant to, was supposed to be avoided for at least six months. Yet, when I tried other foods in the same category after 10 months, I still reacted a bit. I’m now, one and half years later, no longer intolerant to some of these other foods. The idea of testing gluten still scares me, and since I’m very busy, I’m putting it off until I have time for a sick day if necessary. I can bake my own gluten free bread now, that doesn’t come out a brick.

I fasted again three months later for another six days. This time on my own and only with water and teas. I’d learnt that the body is made to be able to fast and that it’s very beneficial for your health. Once your body has switched to ketosis, you get into a very relaxed and calm state. Euphoric even. The switch is hell though as it affects your mood. You get irritable to angry. Body and mind are truly one, not two separate things.

The day I broke the fast, I encountered a hedgehog on my way to the park. S/he was absolutely smitten with me. So weird, but yet I felt so in tune with all of nature. Sounds very cheesy, but it was beautiful. I also love how finetuned your sense of taste and smell becomes while and shortly after fasting. It’s utterly fascinating.

About a year ago, things were really looking up, when I had a very traumatic experience. It made my health issues spiral again, never to how bad it was before, but bad enough. For the first time ever I developed psoriasis in my ear canals, which meant that I was partially hard of hearing. It was an incredibly isolating experience for me. Being a musician, it felt like a particularly cruel joke. It took half a year for it to go away again. I also got a full blown depression, and sometimes would hardly get out of bed. I lost weight again, that I’m still trying to regain (gaining weight on WFPB is so hard).

Where I’m At

Either way, I’ve made it out the other end. As you can probably imagine, there’s a lot of work that still needs catching up. I’d kept my business Sonic Bloom merely afloat. Now I’m in the process of moving thing forward there, but I’ve also been working on my music. I’ve finished the production for another song called Folderol. However, mixing the songs is still causing me trouble. I think I might have lived too long with them and grown too accustomed to how they sounded unfinished. I will finalise them and will release them next year. These songs won’t be the death of me after all the crap I had to get through.

Next year, I should be rid of all intolerances again, so while I will stick with the WFPB way of eating, because it’s healthy and I love it (I’ve promised myself to release a cookbook before I die as I’ve created so many great and simple to cook recipes), I will start booking gigs again and could finally tour without having to worry I might have to fast most of the time. Well, lots of plans and ideas, and never enough time, but first the completion of the album, everything else after.

If you’ve made it this far reading… thank you for your continued patience. Not just while reading this lengthy blog post, but also for being interested enough in new music from me to check back periodically.

I’m on it.

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  • Eileen says:

    Have you tried probiotics?

    • Madeleine says:

      Sorry for the very belated reply. Yes, I’d taken probiotics for almost two years. That alone wouldn’t have worked though.

  • Wow. That must have been a scary journey at times Madeleine.

    Welcome back. 🙂

  • davidly says:

    Well, cheese (as in cheesiness) has its place. In that light, may this submission of sincerest well-wishes achieve transmission by way of this digital domain and into a healthy spirit of musical body and mind, Madeleine. All the best and brightest, davidly

  • W. says:

    Danke für’s (ansatzweise) Mitfühlenlassen… Alles erdenklich Gute!
    Hatte vor nun schon 8 Jahren den Pyrococcus Remix (wie ich heute sagen muss, damals viel zu hart von mir kompromiert 😉 ) zu dem Zero Tolerance-Remix Contest-Release beigesteuert, nachdem mir das Minutia-Album sehr gefallen hatte, und schaue seither immer mal rein.

  • Hi Madeleine,

    Have you ever seen the wonderful site of Heather Christo ?

    Both my daughters have some food allergies,
    and I discovered this site because it was started by a mother who got confronted with the terrible food allergies of her kids,
    so she had no choice but to drastically change her cooking.
    Reading your story here reminded me of reading her story of the long way it took her to discover the allergies.
    Nonetheless, now she has a brilliant website with all kinds of different recipes for all kinds of different diets.
    If, like me, you love to cook, you’re probably gonna love this site.

    Take care !


  • Doug Hayman says:


    Thanks for sharing this here and on that great podcast you did with AfroDJMac. Listened to the first third yesterday morning on my long (2-hrs each direction) commute and second third last night traveling home. I was glad that it veered off from music production to this health topic. While nowhere near the same a struggle, I’d had recent lower back problems come up months ago and tried to find resolution through the US medical system. The diagnostic/prescription model they used was bouncing me around and the physical therapy suggestions were not helping. Came across a book Crooked: Outwitting the Back Pain Industry and Getting On The Road To Recovery where the author shared her difficult journey to find resolution for back issues that were looking like they’d lead to major surgery. Her investigations into back treatment history were pretty frightening and revealing. One person she found along her way who departed from those scary norms was Dr. Stuart McGill from Canada who had a completely different perspective and prescriptive approach which upon trying, has made a world of difference to me. Reading/hearing about your food issues was eye opening as someone who has been vegan since 1987. I learned a lot listening to you on the podcast…when here I was looking to learn more about music/Ableton/composition…which I’ll delve further into with your Sonic Bloom site. Wishing you the best in music, health, relationships and all else that is important.

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