I’ve been glutened more than once lately, reminding me of all that I discovered about the experience those few years ago…back in the time when I first started to avoid it, and then went back to it again, and then stopped eating it completely because the difference was so marked that I couldn’t ignore it any more. I am completely intolerant to gluten. What I found, in a nutshell, was that the experience of having a gluten reaction was far from simple or straightforward to describe. Rather, it gets into all the systems of the body and, in almost as many ways as can possibly be experienced, means PAIN!
So what caused me to be glutened (a verb I see in common parlance far more these days than when I first researched the topic, maybe 7, 8 or even 10 years ago)? And if I’ve eliminated it from my diet for so long, what caused the recent slip-ups?
Perhaps that very thing, as in, the fact I have been avoiding it for just so long that I’d almost forgotten why. Oh, and that intense desire to “normalise” and be more like other people again (our culture’s most strident drumbeat…conform or be damned). Normally, I cope better than most with being the contrarian as I AM one to the soles of my shoes. However, post lock-down, even I was beginning to feel the effects of enforced isolation, segregation, lack of community and I “just wanted” to get back to some sort of normality, back into circulation, in restaurants and open to bursts of spontaneity…”lets eat here”…without all the pre-planning.
Also, during lockdown, I sought comfort from food, as I have a tendency to do and this led to more cases of turning a blind eye to ingredients than I would normally allow, meaning that if I really wanted to eat something I no longer scrutinised for those odd ingredients such as barley syrup, hidden in places you would never expect them to be, or oats that lacked the prefix “gluten-free”.
Not that I actively thought “I’m going to eat gluten today”, that never happened at all, but I got sloppy, even when I thought I wasn’t being sloppy, and I got caught out. Because it can be the little things, the really little things, that tigger-off this glutened effect and this can lead into all sorts of wrong thinking about what caused the symptoms, until you tie this thread off because you suddenly see it as the theme in common with more than one other flare-up you’ve had lately, presenting bizarre and quite horrible symptoms that are otherwise unfathomable and seemingly “out of the blue”. For some idea of how little gluten it takes to spike a reaction, and prevent a recovery, read some of the available science on the topic, such as this study It is the compliance, not milligrams of gluten, that is essential in the treatment of celiac disease, or this one A milligram of gluten a day keeps the mucosal recovery away: a case report. I was once told my a functional nutritionist that it would take 6 months to recover from such a tiny exposure.
So, one time (when I got badly glutened this week) it was because I went with oatcakes from the supermarket, made by one of my trusted suppliers, but not using what they have to label as “gluten free oats”, or not, as applies (and not because oats themselves contain any gluten but because of processing methods and risks of cross-contamination in the factory). I chose them because I was on a mission to avoid palm oil, corn, rice syrup and other undesirables found in the ingredients of alternative brands and these were pretty much just oat, salt and water and very nice too, but the risk backfired. I had my reaction within an hour and am still in it two days later. Not the manufacturers fault…they have told me they can’t guarantee GF, even though they are labelled wheat free, due to the nature of their small preparation area and the use of shared ovens etc. In their words “they are not certified gluten free” and this is the all-important difference. All the more galling since I had been having a good week. Having recovered from last week’s blip, I spent Monday-Wednesday redecorating bits of my house, climbing up step ladders, feeling more than usually active, energised and pain free and this oat cake was a quick snack to reward myself for a job well done when I put my brushes down late one afternoon. The change in how I felt was as rapid as it was stark. By the next morning, I couldn’t avoid the question: “have I been glutened?”
So the symptoms of this, which I will go into below, flagged up to me that maybe that other intense flare-up I had two weeks ago, following a meal in a pub (as referred to in my last post), was due to being glutened. In fact, the check-list of horrible symptoms is identical, including the sheer intensity of pain coming “out of nowhere” and the pacing of symptoms (hideous levels of pain for one day, followed by a second day that feels like a very bad hangover with more than a touch of flu). But how? That time, I chose my meal from the gluten free menu and we had selected the pub because it had such a thing (which is rare).
Yet, and I know from experience, these things happen. Once, in a well known “high end” burger chain with my daughter, the chosen venue of her post-exam celebration, I chose a gluten free burger in a GF bun but had one of the most severe reactions I’d ever had. When I contacted the restaurant, it turned out they had likely put the burger on a chopping board used for the gluten version of the same meal and there may have been other handling and preparation anomalies that strayed from their given GF protocols. As a result of that episode, the manager of the restaurant (as well as giving me a fistful of vouchers that I passed on to my daughter) proudly declared she had spoken to Celiac UK and taken advice resulting in the use of small wooden flags in all their GF meals from now on, so that staff were reminded to treat them separately and with adherence to whatever non-contamination protocols they have in place. I hoped other customers would benefit from this innovation…I wouldn’t be going back. It took several weeks to fully recover my previous level of health, and the same when I was glutened in a small restaurant in Italy in 2019…when my recovery time exceeded the length of our 10 days of holiday (ironically, in a health spa) meaning I was pretty unwell the whole time I was there!
Yet another slip-up I’ve identified lately is one that occurred due to the current transport and supply difficulties in the UK food industry. My usual gluten free “oaties” (a treat I have with my coffee) was out of stock and my supermarket substituted the chia and coconut variety. The problem here, and one I didn’t pick up for a full two months, is as follows. Though these biscuits taste pretty much the same (coconut aside) and even look the same, in a packet that is identical except it is blue and not orange (and there is a chocolate variety in a brown box), the latter has barley syrup listed in the ingredients and, when scrutinised, lacks the phrase “gluten free” in front of the “oats”, unlike the orange packet. Looking at their website, the only biscuits they make that are certified GF are indeed the plain “oaties”…but, on a supermarket shelf, I would never have assumed there was any difference between them given how they all look like part of the same product range, merely in different coloured boxes according to flavour. I had allowed myself to be thrown off by the shape/colour of a box and my misplaced assumption that this brand was all about GF products (it isn’t and I know that now).
So, though I suspect barley syrup has been having a relatively mild effect on my system (no instant “glutened” reaction here) I find myself winding back over the past couple of months to wonder whether this could be the source of the intense occipital and trigeminal neuralgia (see studies and links in support of the known link between gluten and neuralgia below) that I’ve been experiencing since about the time those biscuits were first introduced as a daily treat. I also notice how those neuralgia headaches have subsided over the past 10 days, which is the point I decided having biscuits every day was a bad habit and stopped eating them!
How could I let this happen to me and go unnoticed for so long, with such awful effects (these recent “headaches” have been some of the most intense, frightening headaches of my life) and not scour back through my diet to notice the anomaly? Because I had become weary of having to do all this, always on red alert for ingredients. I had become complacent out of the sheer desperation to have a far easier and more carefree life, like everyone else. My life is already desperately complicated due to all my overlapping health issues and I was ready to embrace a more relaxed way of being, as encouraged by the recovery course I’ve been on, but how given these circumstances? I have amply demonstrated, without intending to, that to relax is to badly trip up, at least when it comes to diet.
Now I’ve opened this box, I see there have been a few things in this category of “slipping up” lately: two brands of oat milk I started using this year (far nicer than the alternatives) don’t actually say “gluten free” on their packets, nor do the oat-based icecreams we enjoyed all summer long. Suddenly, I see all too clearly how much I have slipped and how it happened…
Yet we have been out for some other meals lately and those in small vegan eateries have been fine, no reactions there. Pubs feel somewhat different, they simply don’t have the staff or the space to segregate areas of the kitchen and make sure ingredients don’t come into contact with each other. I find those vegan restaurants I really like, going back to them time and again, tend not to use much gluten anyway; they concentrate on the presentation of veg in all its technicoloured, most flavoursome potential, rather than fillers such as baskets of bread, massive burger buns or beer-battered everything (I avoid vegan street food because that can be another matter).
I guess the risk is just smaller amongst people who tend to craft their food in a far more painstaking way (whether vegan or not), and I tend to find that there is also a much higher respect for dietary differences amongst those who represent the nichest quirk of them all, i.e. not eating meat. I’ve also found that contact with the kitchen of those places is made easy, you often get to meet the very people that prepare your food and they really take note (last time I went to plant-based Oak in Bath, they had prepared me my own “safe” menu based on my emails and had everything “just so” for me, without any fuss). When you state “gluten free” in those places, you really feel listened to but it can, more often than not, seem to induce an eye-roll from the run-ragged staff of the average gastropub and there is not that same level of communication with the kitchen.
Even with all the best laid plans, things can still go awry, so you have to stay on that ball, all of the time. I recently stayed with a hotel where I had good liason with the kitchen prior to and after arrival and was served a very good evening meal, only for them to present two gluten-containing sausages for my breakfast. When asked, the waitress insisted they met my dietary needs and that the chef knew I was gluten free. Not convinced, I insisted she double check, as I had been previously told they had no GF vegan sausages to offer, only for her to return to the table at a sprint, warning me not to eat them. Fortunately, I had acted on my misgivings and passed them both to my husband by then!
So what do I do in this opening-up phase of life, where avoiding the expectation, or even the need, to eat out gets so much harder to do? There’s just a few weeks to go before a family gathering in a spit-and-sawdust county pub that offers no gluten free food at all on its menu, let alone anything that is vegan (or even vegetarian). My plan was to phone ahead to see what they can do for me but, now, I think not. I would rather eat at home than risk this intensley painful episode again, even if that means just sitting there at the table watching three courses being consumed and, as ever, being the odd one out. Yet this is far from ideal or conducive to being seen to take part in social situations. Last time this issue came up (making me “awkward” at a gathering) I was asked if I had to carry an epipen…when I said “no, its not like that” I was met with a distinct eye roll and felt I lost all credibility in that instant (by the way, epipens are for wheat allergy, not celiac but you grow weary of explaining the difference between an allergy and an autoimmunity). So, I guess I am assumed to be a drama queen seeking some sort of inverse attention by excluding myself from group activities due to my ails and, as ever, I have to learn not to care what others think or conclude about me. Learning to self advocate, to self-love, self-nurture, to set boundaries and become ever-more impervious to thoughtless criticism, have been some of the advanced classes of learning to live with chronic health conditions.
Thankfully, my husband is compassion itself and I would struggle to manage without that. At home, he eats gluten free so that I can relax, knowing there is none in our kitchen and he’s quite happy to avoid when we are out if its likely to cause me a problem (I don’t generally ask him to do that but I might if it felt warranted). When we go to that pub next month, he says he prefers to eat at home with me beforehand, rather than have me feeling like the odd-one-out when we get there; we can be the odd couple instead. He only wishes he could do more to make my life easier but I would say he does plenty, helping me to feel that I am seen, included and accepted just as I am, and that nothing is too hard or insurmountable, at least in our own domain. If this means we get to eat out less than some people then it also means we get to save some money for other experiences we enjoy and, meanwhile, I’ve learned to be a fantastic gluten free cook over the years. We don’t lack for anything in our diet, nor do we substitute with supermarket junk (apart from the odd biscuit)!
So am I celiac or do I have non-celiac gluten sensitivity (NCGS)? I may never know because, for tests to be accurate, I would have to eat gluten containing foods, some sources say for as long as 6 weeks, in advance! As I can’t tolerate even five minutes of gluten without the effects below, this does not feel like an option and as the advisory at the end is just the same – avoid all gluten – this is what I do anyway. Whenever this has come up with my GP, she has accepted my self-diagnosis without quibble and the functional nutritionist I once saw was completely confident I was gluten intolerant from my account but wanted to run thousands of pounds worth of tests to get to the same conclusion. Sometimes, when the outcome is obvious and there is no known fix, I have learned to accept and move on without all the labelling but the official advice is “go to see your doctor” and discuss it with them, so that is what I advise you to do if you have these symptoms.
I’m left asking myself the question, have I really been gluten free all these years or was I kidding myself, making a passable effort at avoidance but leaving some gluten access via the back door? Could that small amount of gluten have been enough to do undo all my hard work and keep me from receiving the far better results all my efforts at recovery should have delivered by now? There is some hope in this conclusion, at least.
Part of the problem, I see now, is that I have been trying to cultivate an air of being more relaxed, less guarded towards my various triggers of late in the name of recovery. So perhaps I was kind-of hoping, deep down, that if my body had access to at least some gluten without my necessarily knowing about it then maybe it would gradually become more tolerant to it again…the same way as exposing yourself to a few germs helps build immunity. This subliminal attitude, if it has been lurking there, was probably built upon the long-harboured hope that I will, one day, recover from all my health foibles and enjoy reasonable health, at which point I can resume eating anything I like. This may be so to a point, and is a valid target to aim for, but can I really expect to recover from gluten sensitivity or have I been kidding myself, whilst allowing a certain amount of self-defeating slackness to persist? If these recent episodes have finally driven home to me that I would be far better served putting all my effort into fully embracing the gluten free lifestyle and taking that seriously, then maybe some of the health improvements I have enjoyed of late (which have then been frustrated by so many sudden relapses into old symptoms “for no apparent reason”) might start to take hold so that I can really start to make headway and thrive, with far less or even no more chronic pain!
So, with a resigned smile and a bolt of new-found determination, I wave goodbye to my favourite non-certified barrista oat milk as normally added to my morning coffee and look forward to a brighter future.
Now for a run down of all the wideranging symptoms that I have experienced during this episode and on other occassions when gluten has been implicated (even in very small quantity), with the assurance that all these have been foudn to be linked to gluten in some context or other (studies, forums and so on) though far too many to link here. However, see below for links and information specifically related to trigeminal and occipital neuralgia, nerve damage, neuropathy, PoTs, EDS, fibromyalgia and CFS.
Immediate symptoms from likely gluten exposure:
- bloating and wind
- ravenously hungry, suddenly craving carbs (as though to help absorb the gluten)
- mucous builds in throat, general allergy symptoms
- random tooth and gum pain
- intense shot of headache or slowly gathering migraine
- mood suddenly drops, feel inexplicably depressed
- sore stomach, worsening
In the night and into the next day following likely gluten exposure:
- INTENSE headache!
- stomach pain in the night, stomach lining feels intensely sore
- intense generalised pain, like very bad flu
- intense thirst, dry lips
- hot flushes
- severe back ache
- toxic head
- intense itchy and burning eczema to stomach region, worse in the night, brown scars
- hangover feeling as though have drank half a bottle of spirits!
- bad dreams, even crying in sleep
- beaten up feeling on waking
- PoTs symptoms – nausea, dizziness, lightheadedness, temperature disregulation
- stomach sensitive to food next day
- food cravings and repulsions
- irritable bowel flare-up
- interstitial cystitis flare-up
- prone to muscle spasms, have to be careful of movements to avoid locking-up in pain
- intense hangover feeling persists for up to 48 hours
- acidic feeling in gut, skin, urine
- unremitting or pulsating nerve pains to head – occipital and trigeminal regions
- related nerve pain to teeth, gums, ears, eyes, face, neck, top of scalp
- vision compromised, snowy vision
- peripheral neuropathy very bad to feet, hands and especially torso near stomach
- neck very sore, head feels heavy, hard to keep head upright without support
- extreme low mood out of nowhere continues, feels like depression
- can’t settle down or sleep, tired but wired feeling
- exhausted all the time
- joint pains
- generalised weakness, flu legs
- proprioception affected, banging into furniture, clumsy and dropping things
- brain fog
- intense tinnitis
- cant bear pressure on head eg headbands, hats, pillows
- can’t get comfortable, lying down and certain head positions make worse
- bruised scalp
- internal head pressure, builds as though head wants to explode out of skull at times
- can’t bear cold water on hands
- shower pressure hurts like shards of glass
- red eyes
- puffy face
- burning feet
- rigid muscles, stiff gait
- much more sensitive than ever to usual sensitivties eg light, noise, EMFs etc
- noticeably pot-bellied compared to usual
- mouth sores, extreme tenderness and tooth pain when eating
Gluten and neuralgia…and a few other chronic conditions
“One example of a condition which has been linked with gluten sensitivity a number of times in the medical literature is trigeminal neuralgia: sufferers had decreased facial pain when they stopped eating gluten.”(Food Matters)
As mentioned above, I have been plagued with trigeminal and occipital nuralgia this year, which was particularly intense for a period of 6 weeks and, since that, ebbing and flowing (I now realise) around times when I may have been exposed to gluten. It has returned today, with an absolute vengeance, following the above exposure, and this is the first time I have had it since the day after the pub meal a fortnight ago. Not only does this feel like splitting pressure and pain in my head and in the area around my temples but it affects sensations in my face, ears, eyes, teeth and causes tenderness and pain to my neck and the top of my scalp.
Gluten is known to activate the trigeminovascular pathway, signalling the release of histamine and a protein called calcitonin gene-related peptide (CGRP) which causes dilation of blood vessels in the layer of tissue protecting the brain. This pressure causes a leak of fluids and associated pain and swelling, pressing on the trigeminal nerve, which not only controls facial sensations and those to do with teeth but also signals of pain that are relayed to other parts of the brain. You can easily anticipate how this migth lead to migraine and neuralgia.
Another sufferer describes how she started to realise she was reacting to gluten: “For me, it started with a series of gradual and strange ailments at age 34: pancreatitis; shooting pains in my hands and feet and other joint pain; and finally, trigeminal neuralgia. This last one was the worst pain imaginable, like a searing frozen knife jabbing my left temple, cheekbone, teeth, and ear”. (When gluten free is a gut feeling – The Atlantic.)
On a forum, I found this: “I was diagnosed with occipital neuralgia several years ago, before celiac disease diagnosis. Symptoms that led to that diagnosis included constant migraines for a decade. The doctor said that it was due to osteoarthritis at C2-C3 on the spine. I had radiofrequency neurotomy several years ago to disable the third occipital nerves but was told that they would come back after a year or two. Post-diagnosis of celiac disease, I have had only three migraines, all traceable to accidental glutening, plus occasional stabbing neck pain when it’s cold and humid out.” (celiac.com)
Beyond the anecdotes, I have unearthed this study supporting the same:
Another study links nerve damage to gluten sensitivity. Gluten has been identified as a potential neurotoxin, and many with gluten sensitivity do not manifest symptoms of classic celiac disease, but instead develop nerve damage. In this study, the average age for nerve damage to develop was 55. A correlation was found between patients with idiopathic neuropathy (nerve damage of an unknown cause) and the presence of gluten intolerant HLA-DQ genes.J Neururg Psychiatry 2006;77:1262-1266.
Given the sheer breadth of my ever-worsening health anomalies as hinged upon various oddities of the nervous system (material of many of my posts), plus my age (53, with symptoms markedly worsening since I turned 50) this conclusion has really grabed my attention; yet another reason to take gluten sensitivity seriously.
My neuropathy has been an ongoing source of pain for over 16 years and has been much worse this year, causing odd and sometimes distressing sensations to torso, chest and even deep inside joints and around organs such as the heart (as it is known to do), as well as the usual peripheral neuropathy that I have had to skin, fingers and toes for many years. This has only added to my ongoing sense of constant sensory overwhelm, and could all be to do with gluten, if what I now read has any substance (information that was not so readily available last time I researched the topic). In fact I learn it has its own name: gluten neuropathy. I certainly notice that my usual day-to-day sensititivities, such as to EMFs or changes in air pressure, and my neuropathy symptoms, become much more accute following a gluten episode, so the gluten-effect could also be adding to my sense of environmetnal overwhelm, in no small degree.
Gluten can also trigger autonomic neuropathy, affecting blood pressure, temperature control, digestion, bladder function and even sexual function, which can result in the symptoms of dysautonomia such as PoTs (postoral authorstatic dysautonomia), which I have been experiencing much more frequently for the past year.
The Gluten Free Society lists quite a number of recognised nerve conditions known to be connected to gluten sensitivities here.
For ways in which celiac disease has been linked to effects upon vision, hearing, taste, smell and even touch, this article How celiac disease may affect your senses is a must-read.
As gluten can dramatically increase inflammation in the body, it can cause or worsen complications of Ehlers Danlos Syndrome, a condition that has significantly worsened for me over recent years. On forums, I read anecdotes of people with EDS who became gluten free and enjoyed significant relief from joint laxity and pain, migraine, gastrointestinal and bladder issues as well as improved energy levels, mobility and more.
Fibromyalgia has long been known to present symptoms that are remarkably similar to gluten sensitivity (so much that the line remains blurred, which is why I first set about reducing my gluten intake, being safe to assume there is a relationship) and it is now known that people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) typically present with markers of NCGS (study linked here).
Much of this information is newly emerging, thus was not available when I was first trying to make sense of all my quite bizarre health symptoms 10 or 15 years ago. These days, gluten intolerance is thought of as much more of a “spectrum of illnesses” (article “Cutting out gltuen may help some battle nerve pain“) rather than a single, easy to isolate, condition and so the range of effects it has on a person are widespread and likely quite individual too. I feel sure much more will be understood about all of this in the coming decades and, hopefully, the gluten free lifestyle will become much easier to navigate in lots of ways.
In the meantime, if cutting gluten out of my diet, even more thoroughly than ever before, can really have some marked benefits to my health, especially regarding sudden crashes into pain and disability, or becoming ever-more systemically sensitive to the environment that I live in, then it is certainly worth a try and I am “in”.
Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet.