It’s been 6 months since my last confession (or big post in the Healing Series anyway!). At that point, we were discussing brain retraining techniques to add to our calming-amygdala strategies and I was wishing I had time to devote six months to getting better. Well, the good news is: I didn’t need to…
THE FOODS ARE GOING BACK IN!!!!!!!
Yep, as of four weeks ago, I have been putting foods back in daily – anything and everything I fancy, except the grains and dairy of course. Yet. I’ve not stinted. I’ve just gone for it. I know: you can faint with me now.
Where It All Started, Some Background..
If you recall, I had suffered numerous symptoms for years, with chronic fatigue syndrome, food intolerance and IBS type symptoms mainly. I wasn’t getting well enough with my usual interventions, despite being on a wheat and dairy free diet, which was becoming more and more restricted with other foods being ‘lost’ over time. Garlic caused ear swelling, coffee the stomach spasms, citrus my oesophagus to close up and rashes on my palms and on and on; the list was growing. Then the fatigue worsened and I could hardly stand up. I was cancelling patients left right and centre. I started to get regular migraines, mouth sores and excruciating jaw pain about 8 years ago.
For the fatigue, I checked for anaemia and discovered I was severely anaemic. Hallelujah I thought, at least I could take iron and feel better. However, I couldn’t keep my iron stores up, then couldn’t tolerate the iron and thought I must be coeliac. My GP refused to test me and, at that point, we didn’t have any other choices so I gave up gluten. I improved for a while but it all came back. I investigated why coelaics don’t get well and fell off my chair when I found a really high number of them don’t heal their villi. Is that what’s going on, I thought. Not to be outdone, I found and introduced the gluten gene test to the UK.
That’s where I discovered I had the genes for a gluten related disorder and have since done a ton of research into NCGS (non coeliac gluten sensitivity) and the damage it can do. That’s also where this blog started as I recorded everything I was finding out. Heck, I even broke the story in early 2011 about GRDs in the UK, see here.
I thought that was my key. I found that most coeliacs and certainly NCGS sufferers don’t get well on a traditional gliadin free diet, so I invented the TrulyGlutenFree grain and dairy free diet. I followed that for two years. I felt a lot better, but I found that my symptoms would return regularly. At that point, we didn’t know about cross-reactive gluten foods like we do now – thanks Cyrex – but I had cut almost all of them out anyway, gradually sussing that each ‘attack’ seemed to coincide with a food type.
In fact, almost four years ago now, I went AIP (autoimmune protocol) although it wasn’t really known as that then. Basically, in desperation, I had cut out anything I knew as a nutritionist could cause inflammation and scupper gut healing. I assumed the whole lot was to do with damage done by the gluten related disorder causing hypersensitivity to other food types and increasingly to pretty much anything. I thought the symptoms were most likely down to food reactions and was just cutting more and more out in a bid to find the culprit and feel better.
On the AIP diet (no grains, dairy, nightshades, seeds, nuts or pulses) for 6 months, my fatigue abated a bit, but the mouth pain and migraine were still especially bad.
Went Few-Foods Elimination Diet…
So, I decided to do an elimination few- foods diet to really calm my system down and gradually then put foods back in to trial them one by one and see what my own healing diet might be.
Problem was: after two months on the few-foods diet, I just couldn’t get anything back in! And I have been left with those few foods ever since. My diet has consisted of wild fish and shellfish, root veg, some green veg and some fruit – about 20 core foods. For. Almost. Three. Years.
This was not a good – or healthy – position to be in. It seems healthy enough but is actually pretty deficient in some nutrients – and extremely depressing. Life became ever smaller.
Not Much Left…!
When I started losing even those foods, could only put olive oil on my skin and even RO filtered water made me ‘react’, I finally twigged that this was possibly not (just) biochemical and that my mind was involved in some way or another.
Could it be that the NCGS was causing the original issues but my mind had gone a bit awry about the food reactions or could my body be trying to tell me something? Why was I becoming super-sensitive to so many things, as I know many of you reading this are? I started to investigate other reasons for my pain and super-sensitivity and, if you have been reading the Healing Series, you know I have been working very hard on this now for two years. I didn’t really have any choice: at one point I was down to a size 6 and had lost water, I couldn’t take any meds or supplements to help myself. This was serious stuff.
What Can I Now Eat..?
Anyway, I’ll return to the story in a bit. For now, let’s have the celebratory bit for you! These are the main foods I now have back in, more or less in the order I put them back in. Yes chocolate was first and wine was second. I’ll explain why in a bit; there was reason behind my madness, promise.
Chocolate, Cava wine, various fruit and veg, cashews, walnuts, pecans, pumpkin seeds, SOLO red wine, eggs (any type, not specific), potatoes, tomatoes, soya, coconut, various herbs, beef mince (not grass fed), vanilla extract. And before this point, I had already reintroduced tea and honey.
How fab is that? It means I have been able to eat homemade granola and nut/soya milk for breakfast, omelettes for lunch and have a chocolate or glass of wine as a treat when I want one.
I can’t tell you how relieved and joyful, instead of depressing, that feels. I knew avoidance was stressful – and not just for me either; it affects everyone close to you – but, boy, until that restriction lifts, you don’t realise how much anxiety it causes every minute of every day. Well you do, but it does bring it into sharp relief when you don’t feel it any more.
P -and quite a few people – have actually said I look younger. It’s the fear that’s left my face, the anxiety and depression gone from my mind, the frustration and that having to be strong and cheerful when you’re missing out on life feeling that I know you have too; the watching everyone else be ‘normal; it’s not much to ask for’ ever-present frustrated feeling. They’ve puffed away, finally. And I mean that finally too; it ain’t coming back, no way Jose!
So, let’s get to how it finally turned around.
A sudden shift. Not!
The funniest thing is it was very sudden. And when I say sudden, of course it was the culmination of two years’ really hard slogging consistent work but the switch itself was very sudden.
It’s a lot more complex than this, but let’s try and take the easy route.
I had a pain in my shoulder. It was so bad I couldn’t type to work. I recognised the feeling as I’d had it 10 years before when we were running the clinic in Uppermill and I had to give up the massage as I thought it was shoulder strain. But here it was back again. Exactly the same and yet I hadn’t done anything to cause a strain at all.
Then I remembered a few months before I had really bad leg pain, so much so I couldn’t walk on it properly for around 3 months on and off. That turned out to be emotional trauma held in the physical tissues and the only way we released it was to keep uncovering layers of trauma via meditation and unpicking them with clinical hypnotherapy, thank you Julie. There were a lot of layers but it went. Eventually. I still get the odd twinge which is a sign I am subconsciously – or even consciously – anxious about something.
Could this shoulder pain be the same thing maybe? I meditated on it for about an hour one morning after it wouldn’t shift for days, asking my body to tell me what was wrong and how to get rid if it. This sounds daft, I know, but it actually works. I’ll tell you how in the Healing Plan no doubt. I promised myself at the start of this to leave my sensible, analytical, biochemist-trained mind out of it and just accept and do whatever came up, and I have.
Anyway, eventually I got the distinct feeling that the pain was a strain from pulling my arm right back and punching something really hard! How odd. It fitted though. As a massage therapist, I knew which muscles would be involved and it was absolutely right. So, who was I punching?
Interestingly, the first punching was not me doing it; it was someone else’s anger and I won’t go into that. It went anyway once I’d acknowledged it. The next layer was me punching myself; a sort-of self sabotage behaviour and the sense was: ‘why are you continuing to punish yourself by denying yourself things – foods especially – you enjoy?’
This was interesting because, for the past month or so, every meditation ‘message’ that came up was telling me I was well in various ways. So, it was as if my body was showing me I wasn’t taking that message on board and that I was continuing to act in a self-sabotaging way. The sense was ‘you are well; go and eat a treat!’.
So, dear Reader, I did.
Hotel Chocolat, bless them, had sent me a bloggers’ review bag of goodies at Christmas. I had tried my best – knowing it was as pure a chocolate as you could get and TGF safe – but I just couldn’t make myself try it. Depressing. I kept it for ‘one day’ as you do.
Anyway, I went straight to the bag and ate some chocolate. My head nearly blew off. It is very strong chocolate anyway, even for someone who’d not tasted it for about 5 years! It was HEAVEN, I can tell you.
Of course, then the worry kicked in. What had I done? I was going to react. Oh no..and more besides. I decided to go and spend two hours walking on the beach below the house and distract myself for the time it would normally take for a reaction to occur: two hours on the dot usually for me.
I couldn’t believe it. I could not believe it.
I spent all evening talking to myself and keeping the worry down. ‘Everything’s fine now, there is no need to worry any more, this is an old feeling for a past illness and I don’t have that illness now, I am well, I can eat and drink safely now whatever I choose’ etc etc. I wore myself out and fell asleep.
I woke up the next morning and was still fine. P had been away and when he got back that evening, I asked him not to mention or say anything because this was ‘perfectly normal’ but would he please open a bottle of Cava (again saved for ‘one day’) and join me in a glass on our balcony? This was something I had promised myself ever since we moved in. One day, we would be able to share a glass of fizz on our very own sea-view balcony. It hurt me every time I saw someone else doing it and now here was my chance. At last.
With a very shocked expression, he did as I asked and we drank it together. I had the same worry and fear especially since the last glass of wine trial I had a year earlier after my initial psychotherapy sessions had resulted in four really horrible days involving a morphine painkiller. Nuff said.
Again, I talked myself down – a little less this time as I had the success of the chocolate to bolster me. I could do this and if I could this one, I knew I was well.
No reaction. And I had another glass the next day.
Since then, I have added back something every day for 3 weeks, started adding several new foods together, then combining them in the same meal etc. I decided that if my subconscious mind was asking me to believe I was well, I would show it I truly believed it and just went for it. No small amounts, no one at a time, no gentle reintro. I brooked no nonsense – and believe me, my mind tried and still does, but it is lessening more and more.
So, how have I been?
The same as I was before, but with a nicer diet, an actual life and no depression! And that’s the point. It wasn’t the food that was causing the majority of my symptoms.
One of the things I realised just before the switch happened was that I went AIP/elimination diet because I was having mouth pain, migraines, fatigue, restless legs etc etc etc. They never really got better even on the few-foods diet for two years – the fatigue did, but the mouth and migraine never changed really and other things were cropping up regularly. So, it wasn’t the food; it was something else.
As part of this process, I was told repeatedly that the pain and hypersensitivity was down to PTSD (post traumatic stress disorder). It took me three diagnoses to accept it — apparently it does everyone! – and it is only in the past 6 months working with Julie that the pain and symptoms have started to lessen significantly. I have learned the emotional triggers and how to release them and my own work to calm the amygdala down and change my subconscious thought patterns has worked. The biggest change so far, of course, is the ability to eat again, which I seriously doubted would ever happen.
I’m not there yet and have a way to go but the food going back in is MASSIVE. I am now working on the two key remaining symptoms of migraine and mouth sores. These, I thought, were food reactions, but they are clearly not as I’ve not had any of them since I started reintroducing. Thank Goodness. They are much less as my system has calmed down.
The migraine when it started about 5 years ago was about a 12 sometimes on the Richter scale and lasted 5 days. The mouth pain was more than that. Both very debilitating. The migraine now is once a month – although I never had one last month….and is related to my hormone cycle definitely so I am hoping some B6
if NOW I can get it in will help. They score about 4-6 and last 1-2 days. I have had one episode of jaw pain in 8 months, although I get regular lymph node swelling behind my ears. The mouth sores are still constant. I haven’t been able to fight off an infection there I think, which is hardly surprising given such a deficient diet. This is why I encourage you to do the TGF Core Protocol. Sadly, I couldn’t.
What I mean to say is: I still get some symptoms because of the emotional trauma – in fact, I wouldn’t be surprised if the migraine and mouth pain are still related to that yet – my Bowen therapist and Julie are convinced they are so we’ll see; I get some of the symptoms because of my poor nutrient – and therefore organ/cellular depleted function (ie. fatigue, chronic infection, hormone imbalance), I get some symptoms now because I’ve got the foods back – my digestive system is not used to food and is grumbling a bit during this transition phase, which is to be expected!, and I get some symptoms possibly because – as with any ‘normal’ person you pass in the street, some foods don’t like me and I am TGF. That’s NORMAL. What wasn’t normal was such a degree of hypersensitivity and that’s what I’m talking about here.
How did it get to be so severe?
The difficulty, for me at any rate, had come because of a sort-of perfect storm of issues and I am seeing that in many of you. This may be well wrong but I’ve tried to think about how this all came about in case it helps us work stuff out. This is as far as I’ve got with it so far (it’s interesting that this has come out as third person as if I can’t quite believe it’s me still yet!!):
Micki gets born with the genetic predisposition for a gluten related disorder, plus she is considerably premature and therefore immune-compromised, malnourished and neglected as a child. The genes for the GRD are triggered by any one of those via epigenetics as we know how that happens now. Then, we also have emotional trauma of various kinds as the ACE (adverse childhood event) disorder which is known to kick off hyper-sensitivity and trauma-related anxiety disorders in your 30s and 40s.
Right at the known vulnerable time for an ACE disorder (around 40), Micki’s trauma gets re-triggered and she develops major anxiety and hypersensitivity, later diagnosed as PTSD (post traumatic stress disorder), although the diagnosis is ignored three times as this is so not how she sees herself! She chooses to believe it is to do with food. This belief comes about because she is a nutritionist and therefore sees the problems food cause all the time, plus she has given up foods to help various symptoms and has felt better: coffee for IBS, wheat for IBS, gluten for chronic fatigue etc – all valid biochemical choices to calm a gut down.
However, now her subconscious has learned that giving up food makes her feel better. This thought and belief gets cemented nicely as a new neural pathway in her brain and she eventually only has to see, smell or touch food to not want to eat it so she can feel better. When she does eat it, her subconscious brain has learned that it is a perceived danger and causes a physical reaction to warn her off it. She becomes more and more fearful of food, of anything even related to food and eventually that fear also becomes a deep neural groove and everything becomes fearful. Just going out of the house, answering the phone, driving a car, going anywhere on her own becomes a real stress. She fights it and this causes more anxiety.
Going back to the ACE disorder and PTSD, Micki’s amygdala was programmed at a very early age that she is not safe and she has to do everything in her power to keep safe. The amygdala controls her emotional and physical reactivity and is now stuck on hyper. She sees danger everywhere from a subconscious point of view. The PTSD has been ignored for decades or, more accurately, put down to the food sensitivity and, when Micki is at her most happy and stable, the mind thinks she is now able to process what was buried in a dissociative manner all those years ago. Plus, a family event triggers it again so it now becomes urgent that the mind gets this sorted out.
The subconscious starts to express the trauma and emotional states through the physical body in a bid to get noticed and dealt with.
Oh dear. Now Micki has a true GRD and ACE-triggered hypersensitivity anxiety disorder causing psychosomatic (physical) reactions.
It is only when Micki’s actual life becomes threatened by, sometimes I’ll admit suicidal, depression, not being able to eat, dropping to a size 6 and then not tolerating even water, that she wakes up enough to start looking at it from an emotional point of view because she now has no choice. She takes three actions that are what has led to the successful reintroduction of food now.
The Healing Process
- She starts to meditate every day without fail. This starts to calm the amygdala down and therefore the hypersensitivity and anxiety. This also eventually gives her a dialogue with her subconscious which then gives her clues to what is going on and what to do about each thing as it crops up. This involves even moving away from the trauma scene of the crime, if you like, and to a more healing environment by the sea!
- She begins neuroplasticity brain retraining in lots of different ways to talk to her subconscious and reprogram the wrong beliefs about food and illness. This effectively helps her build a stronger pathway to ‘I am well’ ‘I can eat safely’ which means the other pathways weaken. Gradually, the one gets stronger than the other. A neural pathway never disappears but you can build new ones and strengthen existing ones with the right techniques which then means the ones you’re not using wither. That’s a neurological fact she used to her advantage. If her mind could do this to her, it could undo it too!
- She sought treatment for the PTSD, trying various techniques and finding a combination of NLP and clinical hypnotherapy worked best.
Phew. What a ride! I am fascinated by it even though it was happening to me. It’s quite nice to try and see it objectively and, I hope, that means I will be able to show you how to do it yourself if you, too, are a hypersensitive like me.
There is surely more to be done, of course. I am currently working with Julie to cement the mind changes, as well as a Bowen therapist and am exploring Polarity Therapy to help release the pain from my physical tissues and head which my meditations suggest are emotional in origin, at least in part. We’ll see.
I feel Reiki may well come in for rebalancing at some point, too. I have used laser treatment (thanks Gill, who helped with this) to increase oxygenation in the mitochondria and Qi Gong as a kind of movement meditation to help release my physical tissues too.
The one thing I have found is that the meditation is a must; that this healing has become part of life and that it feels nice to be doing things that support me instead of punching myself! There are many pathways you could take to achieve the same calming down of your system; this is just mine. I honestly think that what we need to do is get an over-arching view of what needs to be done and then choose from a kind of smorgasbord of techniques to find the ones that suit us and get us there.
My job now is to write the Healing Plan and give you that to work with in the hope it will help you get some life back too. If I can do it, so can you. And you have no idea how long I have wanted to be able to say that!
I described myself to someone the other day as no longer being an ill person; I am now a normal person with a few health issues to sort out, like anyone else. Only someone who has been through this type of illness can truly know the difference between those two statements and the work that has gone in to turn that thought around!
The TGF illness is real. The hypersensitivity is very probably not and can be brought back down again using various techniques to calm the amygdala, change neural pathways and release beliefs, triggers and trauma. If I can do it, so can you. You can get well and I will show you how fully when I finish the Healing Plan. Meantime, go back to the Healing Series and read from the bottom up; a lot of the info is already there. This will take at least 6 months to do. Go and make a start.
I am well. I am well. I can eat. Say it with me…