It has now been ages since I first wrote about our new healing focus on TrulyGlutenFree, so sorry about that. Rest assured, though, I have been very busy; I reckon every day for the last six months, I have been either researching something or actively trialling something in some way or another.
I’ve now got to the stage where I think I understand a bit more about what’s going on (with me anyway) and, importantly, have more of an idea about what techniques we should be using to help ourselves. I have actually tried to write a blog post several times to update you on everything, but it is so huge and complex a subject; it’s overwhelmed me every time! So, instead, I will just write about the stuff I am thinking about as I go along and hopefully it will build into something useful! I’ve set up a new ‘Healing’ category so all these posts will be together for you, and I will set up a separate page for you too under Gluten Treatment.
A Bit Of An Update…
Many TGFs are not just gluten-sensitive, or even grain-sensitive, but are hyper-reactive to more and more foods and other elements such as chemicals, pollens etc. The sensitivities seem to increase over time and we become more and more reactive to less and less. We start with eating foodstuffs and some eventually then get symptoms from inhalation and via skin. Sometimes, I even believe thinking about it can bring a reaction on. And that is not as far-fetched as you would think, either. (Before you shout at me: I am most definitely NOT saying this is in our heads, but our heads are most definitely involved, more on this later).
Up to now, we have gone down the immunological, biochemistry type route and assumed this is all to do with the gluten punching holes in our body barriers, causing inflammation and autoimmune responses, including memory B cells ready to react to anything remotely problematic in a moment’s notice. The recent Gluten Summit was all about this and I will leave you to read through my article series on that if you have no idea what I just said!
However, at the beginning of the year, I was so desperately in pain and depressed about the seemingly never-ending restrictions in my diet to control the pain, I started to look at it in a different way. Basically, nothing I did had worked. I had become sensitive to my own TGF prescription, my diet had become even more restricted to control symptoms and, in fact, the loss of foods had speeded up. It seemed the more stressed I got about it, the more I suffered.
Now, we all know that stress is involved in illness. Of course it is. I decided I might need to explain what was happening to someone (my GP? Dr Rostami?), so I sat down and wrote a history of what had happened. Suffice to say, it showed that every time I had a worsening of symptoms and more sensitivities (either loss of more foods or starting to react via skin/inhalation etc), I had just been through some kind of stress. This could not be coincidence.
So, a useful exercise and I started to look at the effects of trauma, and specifically childhood trauma, on sensitivity syndromes. You can read more about that in the original New Focus series starting here.
I began the year knowing that somehow my childhood and adult traumas and stresses were involved in what was going on and related it to the amgydala and stuck ‘on switch’. Again, you can read about that in the above series.
I set off excitedly to find amygdala-control type mechanisms, found some and did a load. They helped. Initially. And then I got worse. This was not going to plan. Naffed off was not the word. It was more like ‘despair’ and that’s the truth.
I felt instinctively that I had heightened my sensitivity somehow, which turned out to be quite right. In my enthusiasm, I had missed out an important step: first, I had to calm my system down rather than retrain it. Anyway, I shall come back to this specific idea in the next post; I’ve already written it but I wanted to do this one first as it makes more sense then.
So, here we go with the first healing post for you. And it’s a biggie. Sit comfortably. (I did consider splitting this up into bite-sized chunks actually, but I want to be able to direct people to it as an article easily so have left it all together, hope that’s OK with you. Just read each section separately if you prefer and pretend I did it that way…
Are We Suffering From Central Sensitivity Syndrome?
I like science. I have a semi-scientific mind, as you know, although my teachers would guffaw at that if they knew that now; I was far too busy setting light to things with the Bunsen burners in class to actually do any science! I like to know what’s going on, which I know is not always possible.
(NB: whilst I’m on the topic, there is much evidence actually to show that learning about your illness and how pain especially happens in the body goes a long way to lowering it for you. I will come back to that in later posts no doubt, but meantime, check this if you don’t believe me. It’s partly because I now know that nugget that I am taking the time in this and future posts to educate you on the biological and neurological processes; it can only help, can’t it? I certainly feel a LOT calmer knowing there are actually known processes going on and I am not going nutty!)
Anyway, back to the main post: whilst researching reasons why our switches might be stuck on, I came across CSS – Central Sensitivity Syndrome. You might have heard of it, but I hadn’t and it has been quite a revelation. It’s all the rage in fibromyalgia (FM) world and basically is another term for a stuck on switch from what I can see. Much of the research and the way it is talked about is to do with pain, and the type of pain specifically in FM, but this is all actually about the body’s perception of threats so everytime you see the word pain, you could just as easily be hearing the word food, I reckon. That said, most of us are actually pain-sufferers, and I hadn’t really thought of that until I started reading this stuff.
In CSS, the body is basically hyper-sensitive and, in FM, it is showing itself as diffuse body pain mainly. One of the best descriptions I have heard of CSS is that it is sort-of a ‘disease of over-sensitivity to threats’. I like that. It describes most of us.
The sensitivity trigger (or threat) varies from person to person but we know that food is one, chemicals another, environmental triggers like light, noise etc are also involved. In fact, these illnesses are thought of now by those in the know about chronic disease as CSS conditions:
- Fibromyalgia syndrome (FM)
- Chronic Fatigue Syndrome (CFS)
- Multiple chemical sensitivity (MCS)
- Irritable Bowel Syndrome (IBS)
- Post Traumatic Stress Disorder (PTSD)
- Frequent Tension Type Headaches (TT)
- Premenstrual Syndroms (PMS)
- Food Intolerance
- Stimuli Hypersensitivity
- Interstitial Cystitis
- TMJ (temperomandibular joint)
- Dental pain
- Visceral pain
Some more psychiatric disorders can occur with CSS too, including depression, OCD, bipolar disorder, PTSD (post traumatic stress disorder), GAD (general anxiety disorder) and panic attacks; more on why this happens later.
Um, food intolerance (my emphasis), did you see that? How many illnesses can you count on there? I think I could probably do 8 minimum at some stage in my life. Ooer. I think I am a CSS person!
What is CSS?
The best analogy I have found for CSS is that of an electric guitar and an amplifier. You can strum the guitar in loads of different ways (epigenetics) but the volume of what comes out is controlled by the amplifier. If your amplifier is up high (think Spinal Tap!), you are going to feel things more. Some people have their amplifiers set on high, others low. Sufferers of CSS have higher than normal settings.
This basically means that signals (such as pain in FM, pain from a food reaction, any reaction to a perceived threat etc) that shouldn’t get through from the spinal cord to the brain do so and CSS sufferers feel them more than someone whose amplifier settings are normal. That’s a very simplified way of putting it, of course, but I get it best when it’s nice and simple!
Incidentally, much of my information from her on in, was gained from a fantastic lecture, free on YouTube :), given by Professor Daniel Clauw, a Canadian clinical neurologist who has been doing much of the research into CSS. It’s over an hour long but fascinating. I will link to it at the end for you to go and watch it if this strikes a chord.
CSS refers to centralised pain or symptoms. That means it is controlled by a brain-amplified activity, not by inflammation or immune activity in the local area. Wow! That is BIG news.
The understanding that pain comes from damage or inflammation in localised tissue is now outdated (if not entirely accepted yet by people not in the neurology field). The notion that arthritic knee pain is caused by loss of cartilage and rubbing of the bones together etc no longer stands up, if you’ll forgive the pun. All pain is in the brain’s response to a signal. It is literally all in your head. And, again, if you need evidence of this, watch the Prof Clauw video and also this one, from Dr Lorimer Mosely’s TED Talk Why Things Hurt, which is actually very funny and a 15 minute explanation for you.
Are you still with me? This is fun, isn’t it?
The key message here for us is: we can work on the leaky gut, inflammation and immune reactions all we want, but, certainly in some people, it is actually this amplification we should perhaps be working on. That’s not to say I think those physiological things are not happening; they are, but maybe in cases not responding to the normal treatment protocols (me!), we need to look here instead. It’s a thought…
The classification of a likely CSS sufferer is someone who has the following (and I thought it might help if I used myself as an example so you can see how this might work in a real life case; baring my soul for you as per ;):
- Pain or symptoms in several different areas of the body or that move about from day to day and/or have had several different types of pain throughout life, often starting in childhood or teens (me: bone pain, headaches, stomach ache as child, severe PMS; 20s: PMS, IBS, neck and back pain, 30s: IBS, restless legs, headaches, ear pain, neck and back pain, 40s: migraine, throat closure, mouth and jaw pain etc etc. I never really thought of my problem as pain, funnily enough, but realised it when I did this exercise! And I’m sure I’ve left some out!)
- It vacillates a lot and is unpredictable, so you never know when a flare is going to happen (me: triggered no doubt now by food but the reactions vary in intensity and frequency, even sometimes with the same foods)
- Abnormal pain ie. somehow heightened or always there in some way (me: bra-wearing hurts, head points always hurt when pressed, bed sheets can hurt, sometimes even hugs!) Pain is often a nerve type pain rather than sharp – described as gnawing, burning, stabbing, deep etc. It might be useful here, in fact, to test the FM pain points; I often find many hypersensitives can score the same high levels (FM is 11 out of 19 points, I think).
- Usually other symptoms especially fatigue, sleep issues and memory difficulties (I know this sounds like FM, but you need to understand that FM is part of the CSS spectrum it seems, so many hyper-sensitivity conditions will also have these other symptoms) me: yep although fatigue and sleep are fine except for in a reaction, but def memory problems!
- Usually sensitive to other stuff to, eg. light, temperature, noise, smells etc. (Yep, always especially to noise)
- Tend to suffer from depression, distress, anxiety, not least because of the bloomin’ pain, but also because the same neurotransmitters involved in the amplification process affect mood.
Just so we’re clear: I’m not saying all pain is caused by this. There are several types of pain – local trauma or injury, nerve compression or damage (eg. sciatica) and centralised: the CSS, (eg. FM, IBS, headaches, even interstitial cystitis and vulvodynia are classed here because they are brain-amplification problems, not local inflammation, despite what we have always been told!)
What Causes the Higher Amplification?
There are two main pathways to pain in the brain and central nervous system, as far as I understand it as it relates to CSS anyway, and those either increase pain signalling or decrease it. Both are controlled by specific neurotransmitters.
Here is a copy of one of the slides for you from Prof Clauw, which shows the different neurotransmitters involved.
I have got a Neurotransmitters Test (or this one – and I need to see if there is a simpler one than that and will list it if possible) that does most of those which could be worth looking at, as it might mean targeting treatment more effectively (more on the treatments later).
In other words, people’s neurotransmitter levels are up the swanny in various ways. Note that those neurotransmitters are also involved in various mood disorders so it is not surprising that many CSS sufferers are also going to suffer with, or have their sensitivity heightened by, conditions like chronic anxiety, depression, trauma etc. They are so interlinked. For example, using my real-life case again for you; could it be the early life trauma causing PTSD (post traumatic stress disorder) that has kicked off my cycling heightened amplifier? Yes, it could. Could that mean I suffer from even higher amplification with stressful situations, which means reacting more strongly somehow and turning the dial up a notch into the bargain? Yes, very probably. See how it works? I’m guessing, of course, but it does seem to make sense. The trick, in this case, presumably is going to be dialling that amplifier back down again neurotransmitter-wise, but also dealing with the PTSD original trigger, if indeed that’s what it was. I plan to get some help with this and see.
Women, especially those menstruating are 1.5-2 x more likely to have CSS. Pain is worse just before menstruation (tell me about it!)
Genetics are involved (and I have a small list of genes I can share for those of you doing 23 and me etc, plus they are in the Clauw video). There is usually a family history of pain in more people than you would expect in the general population (only 1 in 3 suffer chronic pain and it’s usually about a third of family members on one or both sides in CSS families).
Then, here’s where we start seeing our usual GRD (gluten-related disorders) triggers; these are thought to trigger or exacerbate CSS: stress including emotional, psychological and physical including infection, inflammation etc and a chronic localised pain of some kind (in other words, a painful injury can trigger the CSS type pain likelihood if it continues past 3 months or so; I had whiplash 3 times from berks banging into me in the car – twice I was even stationery!).
Early life stress (ie. in childhood) appears to be a biggy (again), as does post traumatic stress disorder (see above!).
Over time, the consequences of chronic pain/sensitivity make things worse and we go into a spiral. We become more and more distressed by what’s happening to us, we isolate ourselves more as we have to cancel appointments and become generally less active and not doing fun things, we don’t sleep well and we get stuck in ‘survivor’ type techniques eg. doing loads on good days, which is a known pacing issue that only make flares more likely to happen afterwards. Sleep and activity seem to be key.
How Do We Turn Ourselves Down?
This is what we all want to know, isn’t it?! There are basically two prongs of attack: deal with the epigenetic/lifestyle side of things and specifically addressing the neuro pathways that limit pain signalling (as per the diagram above).
The first prong: the epigenetics of it all are what I will be waxing lyrical about mostly in future posts. I’ll tell you what specific techniques I’ve found to help and how to get going with them. In essence, it’s all about dealing with the triggers (eg. emotional/physical stress etc) and calming the hyperactive system down in much the way we were talking about in the original amygdala-type focus. Here’s a nice summary I read on saveyourself.ca:
Make your life “safer” and less stressful. Gentler. Easier. Centralization of pain is the process of the central nervous system’s “opinion” of the situation becoming more important than the actual state of the tissues. This is not an “all in the head” problem, but a “strongly affected by the head” problem, like an ulcer that is caused by a very real bug but is severely aggravated by stress.
When your CNS is “freaked out” and over-interpreting every signal from the tissues as more painful than it should, therapy becomes more about soothing yourself and feeling safe than about fixing tissues. Pain is, at a very fundamental level, all about your brain’s assessment of safety: unsafe things hurt. If your brain thinks you’re safe, pain goes down.
And techniques to help us feel more safe and, most importantly, get that message across to our bodies, is what I will be focusing on mostly from now on in the healing series posts.
The second prong is meds. I don’t normally advocate a lot of drug use and I need to look more yet at natural alternatives to the meds, but sometimes meds can be literal lifesavers. At the very least, in this kind of hyper-sensitivity circumstance, it might be a useful short-medium term strategy whilst you sort the epigenetics bit out. I’ve not read much yet on whether medication is thought to be a long-term thing or short-term; this is not my field, of course. You need a pain clinic doctor, I think, for this.
(By the way, I know this is not exactly ‘non-ingestive’, but I am including it here as think it could be an important approach for some people).
However, the usual pain meds like steroids, NSAIDs and opioids are not appropriate here and are unlikely to help much if the pain is CSS. In fact, there is a thought that chronic opioid use could be turning the amplifier up (see low dose naltrexone later – this actually works by lowering levels of body opioids, which it is thought CSS sufferers make far too much of internally). What’s required are meds that work on the neurotransmitters. (Much more on this is in the Clauw video, please refer to it before willy-nilly taking anything or marching in to see your doctor).
Research suggests so far that the strongest candidates helping people include the tricyclics such as amitryptiline and cyclobenzapine (US only?), SNRIs and NSRIs eg. duloxetine and venlafaxine and specific types of ligand anticonvulsants such as pregabaline, neurontin and gabapentin.
Now, I know what you are thinking: these are ruddy antidepressants, this is NOT all in my mind!!! Gnashing of teeth etc. I know they are, but remember I said the same neurotransmitters that control pain signalling also control mood so that is not surprising then is it? They are used quite differently and in different dosages apparently. Of course, I have no idea what levels etc; you need to talk to someone in the know and I need to find out more yet.
I did read that one of the most effective dosages is Flexoril 5mg two hours before bed, increasing to 10-15mg if needed. Talk to your GP – if you can get this in the UK; I’m not sure you can. It’s an old, inexpensive drug apparently so it would be a good one to trial maybe if you can.
NB: Does it matter if they are TGF? An interesting question. I suppose I think yes, but if the point is to lower the pain/hyperactivity mechanism, perhaps you wouldn’t have such a bad reaction to it? I’ve no idea; another thing to investigate.
The next best category of meds thought to help include Tramadol (I have had this and it knocked me senseless and vomiting for 3 days but did immediately get rid of excruciating pain! I have known others who take it daily with no ill effects at all, my gnashing of teeth this time..), older SSRIs like Seroxat, but you need much higher dosages than normal, GBT (gamma hydroxybutyrate, actually the date rape drug, so that’s unlikely to be given to you!), low dose naltrexone (as I mentioned earlier, is showing good promise), medical cannabis (again, unlikely to be given to you and won’t work if you smoke or snort it; it has to be orally ingested apparently!)
Weak evidence meds include SAMe, growth hormone, 5HT (5-hydroxytryptamine).
No evidence at all these will help with CSS: opioids (like codeines, morphines, although I note Tramadol above??), steroids, NSAIDs, diazepines or guaifenesin.
Phew. I think we’ll leave it there. Hopefully, that is enough to get your appetite whetted. For more info, do watch the Prof Clauw video Chronic Pain: Is It All in Their Head? It’s very good.
I have no idea of whether this is worth a try, whether you can get a trial of the meds, if you will react to them etc etc, but I offer the info in case because, to me, there are just too many correlations between CSS people and us hyper-sensitives, whether that is triggered by gluten or not.
I will continue to investigate as much as I can and post some more on the processes as I come across anything useful. Have you come across CSS, had treatment for it? Did it help? Can you add anything useful to this and move us forward? Do join in with whatever you find out on here or the FB group.
I will start the next blog with the epigenetic approach and why I had to go backwards first…