Oxalates, pain and autism

I’ve been deeply researching oxalate poisoning for a number of days now and the article below is by far the most thorough and accessible I’ve found. Don’t think this has anything to do with you? Oxalates can be related to a wide range of health issues, from inflammation to urinary frequency, interstitial cystitis, nonspecific joint pain, carpel tunnel, nerve pain, weak bones, vulvodynia, rheumatoid arthritis, lupus, tissue destruction, autoimmune diseases, digestive problems, skin rashes, vision issues and just so many chronic pain issues, including fibromyalgia, plus very many more.

Its a topic I have, inevitably tripped upon many times and keep circling back to but, this time, a case for reducing oxalates in my diet was even more compelling, for reasons I will explain in more detail below, if you are interested.

The summary is, I’m currently easing into a low oxalate diet because lock-down summer led me into eating even more nuts, seeds (and nut/seed flours), chocolate, spinach, beets and pulses than usual, the result (coincidental or otherwise) being many more health issues, weird rashes and episodes of mystery pain than ever. The good news is, if it is oxalates, it can be reversed once you know more about it and, frankly, I am astonished that more fibromyalgia websites don’t seem to make much of oxalates as a potential root cause since the link between them is nearly always listed on oxalate information sites. One well-respected information site I use, listed under resources below, states that it has witnessed very good success with the low oxalate diet for people with fibromyalgia as well as interstitial cystitis, vulvodynia, depression, arthritis, all sorts of gut problems, autism and developmental disorders, and that’s quite enough to encourage me.

So the article that I recommend as a thorough summary of oxalates, what they are, what they sometimes trigger, is from Sally Norton, considered a leading expert on oxalates, found here: Joint pain? Inflammation? Slow to heal? Fatigue? Sleep issues?Could oxalate poisoning be to blame? I also recommend this one: Oxalates Control is a major new factor in autism therapy (The Great Plains Laboratory) and the associated discussion on the topic (transcript) with Dr William Shaw, autism researcher and founder of that lab: How Oxalates Ruin Your Health if you want to look at the topic from the autism angle (these are a really good summary of what oxalates do in the body regardless).

“This reactive compound kind of trashes your basic building blocks of connective tissue,”says Norton. It also causes inflammation and interferes with your body’s natural healing and repair mechanisms overnight while sleeping. This information is a red flag to someone with suddenly very overt Ehlers Danlos Syndrome (EDS – connective tissue weakness) since menopause and with years of inflammation and mystery pain behind me!

I won’t attempt to better the articles above for thoroughly explaining why oxalates might be worth considering if you suffer from long term health issues, not least fibromyalgia. What I want to add here are some of my own personal experiences and intuitions around the topic, along with observations from the early stages of lowering my dietary oxalates. But first off, an important question:

Where do oxalates come from?

Oxalates come from dietary sources but the body also makes them. The latter, surely, indicates that they serve some kind of a purpose but exactly what that is has yet to be concluded (though I have proposed some theories below).

In short, oxalic acid or oxalates are tiny molecules found in a variety of seeds, nuts and vegetables. Because it is a highly reactive compound, it is is attracted to positively charged minerals, especially calcium.

So oxalates are termed an antinutrient, because they bind with other important minerals in the body preventing their absorption and also because they can be highly toxic to the body. Its telling that the kind of foods that contain them in any quantity (mostly nuts and seeds but also some greens, especially spinach, and roots such as potatoes and beetroot) do so as a protection mechanism to prevent animals and bugs from consuming them. The thing is, even long cooking does not seem to remove or deactivate them, although boiling rather than steaming certain veg is certainly to be recommended.

In many people, a diet too high in oxalates can result in a kidney stone because oxalates, as above, bind with calcium and this can be a problem to elimination in great quality.

However, in other people there is no significant urinary oxalate to be measured because oxalates are absorbing straight into the blood, to congregate in blood vessels, bones, organs and soft tissue, which is where they create havoc.

(See image) this is because they are pointed and shard like or some are long and needle-like but the net result is pain, weakness, blockage and inflammation.

Autism and oxalates

Why does autism have anything to do with it? A recent study brought to light that children with autism display 3 times the oxalates as the control. As yet, it seems unclear as to whether this is from diet or excess metabolism of oxalates by the body (yet to be studied), although I have read the opinion that it is the former; not necessarily because of particularly high dietary intake but because of poor processing of any oxalates at all, when they get to the gut, in the case of autistic kids, as in they can’t handle them so well. The conclusion of the one study carried out, which is just crying out for follow-up studies, concludes as follows:

“Hyperoxalemia and hyperoxaluria may be involved in the pathogenesis of ASD in children. Whether this is a result of impaired renal excretion or an extensive intestinal absorption, or both, or whether Ox may cross the blood brain barrier and disturb CNS function in the autistic children remains unclear.”

A potential pathogenic role of oxalate in autism

The issue seems to be one of absorption; in some people, presumably with a leaky gut issue, oxalates are absorbed into the blood stream and may even cross the blood-brain barrier, triggering a cascade of other issues, including those involving cognition and nerve function.

Not only may the gut itself be the weak link here, but the oxalates themselves may be causing or worsening the leaky gut issue; so this is a chicken-and-egg scenario that is in desperate need of more studies. I would particularly welcome studies involving autistic adults because, as yet, it is an unknown quantity as to how an existing oxalate sensitivity would respond to the additional challenges of ageing, especially post menopause when oestrogen levels drop (with inevitable effects on the gut lining and other tissues, especially if EDS is present). A study involving oxalates, autism and EDS would be especially welcome.

In fact, are oxalates the missing link between autism and EDS (which is undeniably there)?

Because, when oxalates pass into the blood, they find their new home in organs, soft tissue, joints, ligaments and skin, amongst other places, and these can cause intense widespread pain and tissue damage and weakness. Problems that could be deemed to be evidence of oxalate poisoning have increased in my case, at least tenfold in the last ten to fifteen years, corresponding with when I began to be perimenopausal, and especially the last two since menopause occurred, hence my interest.

I can also track issues with high oxalate containing food going all the way back to childhood, although dietary calcium was also very high at the time so perhaps my calcium levels didn’t suffer so much (in fact, I would often crave dairy products, with great vehemence, following what I now suspect were oxalate peaks or dumps). These days, I am intolerant of milk and eggs and follow a vegan diet, plus much of my calcium has been coming from oxalate rich foods, such as spinach and nuts, so herein lies my difficulty.

What triggered my current flare-up?

As I just said, I follow a vegan diet and already consume a lot of greens, nuts, legumes, seeds, root veg etc. so tripping upon an oxalate problem was probably inevitable if I have a predisposition (which I now believe both autism and EDS to be). Its been a long-running mystery to my how I could still have so many health issues with few let-ups eating such a healthy, balance, organic diet and that’s included following Anthony William’s popular advice for several years; which has brought me some benefits, for sure, but its as though something has been unpicking all my good work.

However, this year with lockdown, my diet underwent some (what I thought were healthy) changes, to do with bulk buying whole foods, relying on deliveries of whatever seasonal organic veg came my way rather than self-selecting so much and doing what I thought was best to build resilience against viral infection.

So, in the space of one summer, I altered or increased the following oxalate sources of food (VH denotes very high and H denotes high oxalates):

Spinach (VH) was consumed very regularly indeed

Tahini (sesame VH) was consumed almost daily as a generous spoonful with breakfast

Beetroot (VH) was increased all summer long as well as frequently juiced

Almonds (VH) which I used to avoid or minimise, was increased as both nuts and flour

Oregano (H) became my new favourite herb

Raw dark chocolate (VH) was consumed daily (all dark or milk including cacao chocolate contains VH oxalates. Used cacao (VH) more than usual.

Began baking snacks to keep work-at-home family satisfied (something I seldom did before) using various nut and grain flours plus more nuts and seeds (many H or VH), including amaranth (VH), although I had an immediate adverse reaction to that and certainly struggled with almonds unless well-mixed with other grains.

Changed to a gluten free bread, conveniently delivered to my door, containing buckwheat (VH) in its mix of other high oxalates. The gluten free bread flour I use at home also contains buckwheat in its new recipe (darn these trends!) and, as I have an overt intolerance of buckwheat whenever I eat it as a standalone grain, I now assume I should have been avoiding it more diligently.

Trippled my increase of cucumin/turmeric supplements as an anti-inflammatory (turmeric is VH, reports vary on whether extracted curcumin is M or H) and began drinking golden milk regularly

Used more spices to add flavour to mundane foods (many, such as cinnamon) are H or VH

Increased potato (VH unless red H) and especially sweet potato (VH) consumption

Took 1000 mg of vitamin C daily, as well as increasing fruit consumption, as immune defence (the body converts excess vitamin C into oxalates)

Drank matcha tea (M to H) every day whereas used to drink only very occasionally

Increased quinoa (H) consumption to cope with lockdown lunches

Increased legumes especially black (VH) and kidney beans (H)

Started adding hemp (H) protein powder to my juices

Consumed tofu (M to H, something of a grey area as soy beans are H) very often indeed, though I used to avoid soy products altogether

Went mad for chia seed (H) pudding, which I used to think I couldn’t tolerate as it irritated my colon but seemed OK when soaked overnight

All (or even a few) of these alterations, added to a more sedentary lifestyle are quite enough to tip the oxalate balance in most people, without a predisposition towards oxalate poisoning. Interestingly, it was when I began to reduce some of these suddenly, such as abruptly ceasing spinach consumption at the same time as getting bored of my daily scoop of tahini on my breakfast and cutting back on baking, that I seemed to have a sudden burst of health symptoms which…when I investigated them…sounded a LOT like oxalate dumping. Because its when we reduce the load that the body starts to offload the oxalates held in storage and this can temporarily worsen the situation!

The celery question

Its also worth noting I have been drinking celery juice every morning for almost three years, per the Anthony William the Medical Medium’s advice and the whole popular movement that cites celery as a miracle cure to chronic illness. Overall, especially as a medium for settling my gut before starting my day, keeping bloat under control and replacing minerals, I have found this really helpful…but celery is high oxalate, which is a concern and surely a consideration in my case. Whether it is still high oxalate when juiced, I am not able to ascertain. The Medical Medium himself has taken this controversy on and declared the benefits outweigh the negatives, but he is clearly not a believer in oxalates as a major health issue. This is where I defer to hard science (he is not medically trained) and a whole ocean of anecdotes and informed individuals who have taken oxalates seriously, thus I am prepared to forego my morning juice as part of this experiment, and so I have. I may try a much smaller amount of celery juice than my usual 2 bunches per morning at some point, will see what my body tells me.

This article from Mast Cell 360 directly tackles the question of whether to drink celery juice as per Anthony William in the case of someone with oxalate sensitivity and comes out with a verdict of No, linking it in their direct experience to “really bad joint pain” – “Healthy” Foods to Avoid when you have Mast Cell Activation Syndrome or Histamine Intolerance.

Starting the low oxalate diet

Since a week ago, I have paused my celery juicing, ceased eating chocolate, nuts, all seeds (except flax (L) and a modest sprinkling of dehulled hemp (oxalate status unknown and a lot of people are demanding to know given its health benefits), turmeric, pepper, sweet potatoes and beetroot (I had already ceased tahini and spinach, amaranth, almonds). I am, cautiously, introducing a small amount (quarter of a teaspoon to start with) of camu camu powder (NOTE: Now switched to a freeze dried cherry source) as alternate vitamin c source. Mostly I am doing fine, morale at having to eliminate some favourite foods aside, though I have been having increased skin burning symptoms and sharp-electrical pains in random body parts (see headings below), but still at a tolerable level. The important thing is to make the changes SLOWLY so as not to dump a load of oxalates into the blood stream, and back into circulation, all at once. I am also finding regular bentonite clay baths or epson salts helpful.

Other LOD steps I have taken

I have also introduced calcium citrate (NOTE: avoid if you have MCAS, as I do…quickly noticed my body tissues becoming very acidic so am now taking a seaweed source, or Pure Enscapsulations do an antihistamine version but it has bovine content so no good for me; see this article if you are tackling oxalates with MCAS) with every meal. I already take high dose vitamin D, required (helps with calcium absorption but this is important. Advice suggests taking B6 supplements but as ever, go slowly (I’m taking drops in water but an almost full dose made me feel extremely nauseous so I am going back to small drips of this and building up). I try to drink half to one squeezed lemon in water per day (go slow if have MCAS), have added in more coconut water to replace electrolytes, make sure to have a pinch or two of Himalayan salt or a salty snack per day (also good for dysautonomia), make sure to drink plenty of water, am making green tea the exception rather than the rule so both tea and caffeine have reduced, and am being generally mindful of which herbal teas I drink. I am certainly leaning more on white rice and coconut foods as a gentle means of elimination though I still use peeled white potatoes in modest quantity. I am continuing with 3 x magnesium supplements as before but realise I may need to up-adjust my mineral uptake as this progresses. Mold (mould) cannot be tolerated if you have oxalates (which was one of the first clues this might be my issue as mold in my local woods was making my knees buckle!) as it makes the issue worse, so the need to address any black mold in the bathroom is more pressing than ever given the damp time of year.

As I start this, I notice my stomach is so much more bloated and round than usual but, rather than panic or backtrack, I assume this is the transitional stage, though one to keep an eye on. (NOTE: may be partly to do with an oxalate dump but also the calcium citrate I’ve been taking for a week! Now changed to a pure seaweed source, as above.)

I’m getting some necessary energy for glycolysis (to avoid muscle cramps or flatlining energy) from mango, maple syrup and grapes rather than mostly dates (H).

As I said, I can’t better those accounts of what oxalate poisoning looks like or how to approach the elimination process than those other articles I have linked here, below and under my Health Resources tab; please refer to those for the science. I simply want to add a few observations of my own, as follows:

Old wounds

Oxalates seem to love to gather around old wounds; an anecdote that can be found in both the medical articles and all over the forums. Operation wounds are a prime example, and this was quite a lightbulb moment for me because I have been “stitched up” three times, once for keyhole surgery to remove a fallopian tube/ectopic pregnancy and twice to the vagina area, once for an enormous cyst (and cysts themselves can be a sign of oxalates in the tissue) and quite a bit of repair work following my daughter’s birth. The latter was so problematic a year later, I was scheduled to have the issue restructured but squirmed out of it due to other commitments.

All of these areas have continued to flare up with inexplicable pain from time to time, as though they are beset with shards of glass internally. The fallopian tube site hurts right there, where that tube used to be, not where the keyhole was done, and I have scarring where the skin repeatedly turns brown in a circle right above that area of pain, which is the oddest thing. It is neither exzema nor chaffing but, rather, like a dark ghost of some internal wound site that just won’t go away.

I have another wound site from an deep injury on the elbow from when I was a kid and it was a problem for years afterwards, and still gleams like a silvery fish. Its right over the nobble of my elbow that will still hurt so intensely for no apparent reason and then stop just as abruptly, and repeat (I’m pretty sure it tells the weather).

I also have a pet theory that oxalates gather in the site of emotional wounds. People speak so freely, these days, about how emotions are stored up in the body tissue but no one seems to consider what that looks like. As the theory goes, every health issue begins with an emotional wound directing negative feelings to some organ or other and I suspect there is a lot of truth in that (Dr Christiane Northrup writes eloquently on the topic). My thoughts have taken me off to the idea that oxalates may tend to pool into those areas and build a sort of holding structure that houses the emotion but then, inevitably, attracts pain and other issues to the site (oxalates will certainly do that). I guess, if the person can’t let go of the emotion, the body has to deal with it somehow and the wound area becomes a focal point for more things to go wrong.

Are oxalates, at some level, trying to be helpful or is the body (since they are there) trying to upcycle them for a useful purpose, like using a pile of rubbish to barrage a door? On that same track, I also wonder if oxalates and ehlers danlos are related in a similar way; as in, perhaps those prone to EDS hold onto oxalates as an attempt to patch up tissue that has become otherwise weak or compromised, like using fibreglass to plug a gap or as a sort of sellotape to breach the gap. Since starting my low oxalate diet, I have had a flare-up of what used to be one of the most treatment resistant pain zones on my body, my right shoulder blade, which eventually did respond to myofascial therapies (a great deal of emotion was found “in” there by my therapists) and had thus been virtually pain free for a number of years now; a sign something is shifting again?

Bladder frequency

This has been the bain of my life for more years than I can count and much worst in the last 3 to 5 years, not only annoying and interrupting me in the daytime but getting me up several times a night. All the usual avenues have been pursued and the net conclusion is that it is interstitial cystitis without, necessarily, the pain although I have intense episodes of that too. Discovering that oxalates can be related to this has been a big encouragement that it might not have to be something I am condemned to live with forever, if I am prepared to change my diet!

Vulvodynia

Vulvodynia turns out to be a common symptom of oxalate poisoning and is something I have suffered from for many years, all the way back to childhood, though without a label for it for many of those bewildering years. In my mid to late twenties, it was an intense and recurrent problem and resulted in a stream of baffled doctors prescribing antibiotics far too many times, with the inherent problem of repeated candida infections and still no abatement. Unfortunately, antibiotics may also kill off the very microbes in the gut necessary to process oxalates in the diet, which should enable them to be eliminated as waste. Its also worth noting that I drank a lot of fairly robust beer at that phase of my life; more than was good for me in some very obvious ways but malt is extremely high in oxalates and I was probably overwhelming all my body tissues with my liquid diet.

In the end, I think my ex husband and probably the doctor too, came to he conclusion it was psychosomatic and perhaps I did too, given I had been sexually abused not many years beforehand, an issue that was painfully unresolved as there seemed to be no trusted person with whom I could process the trauma (I never did gain any psychological support for it). As above, oxalates seem to love an old wound; perhaps they think they are being helpful by locking pain away in a would-be ivory tower, but the result has been many years of repeated pain in a part of the anatomy that few people want to compare notes about. More recently, I have tried to laugh it off with the user friendly term “electric vulva” (which sounds like a rock band…) and that humour has somehow got me through what is really not a laughing matter (rather that than “lady part issues” as I have often come across); being the sudden episodes of hot, sharp, electric nerve pain that seems to come on for no obvious reason. I tried some myofascial therapy for it years ago, targeting the pudendal nerve (see my 2017 post about that if interested) and it did reduce the incidences but it can still come on as strongly, seemingly randomly, as ever. The Healing Histamines blog below also touches on this issue.

Incidentally, this obvious link between oxalates and nerve sensitivity begs the question, is this one of the factors behind the sensory overwhelm of autism?

Oxalates in breast tissue

As I work to clear oxalates out of my body, its been noticeable that I am back to experiencing sharp, painful, stabbing, hot sensations in my breast tissue which feels like needles, glass shards (these are terms I am well-familiar with using to describe them as this is a very old sensation). This phenomenon used to be one of the regular curses of my life (going back to my 20s and peaking at certain times) and had, thankfully, subsided as of the last 2 or 3 years, so to have it back right now is interesting. Are oxalates stored in breast tissue? Turns out they most certainly are, in fact it is considered a serious risk factor for breast cancer, see this 2015 study Oxalate induces breast cancer which concluded:

We found that the chronic exposure of breast epithelial cells to oxalate promotes the transformation of breast cells from normal to tumor cells, inducing the expression of a proto-oncogen as c-fos and proliferation in breast cancer cells. Furthermore, oxalate has a carcinogenic effect when injected into the mammary fatpad in mice, generating highly malignant and undifferentiated tumors with the characteristics of fibrosarcomas of the breast. As oxalates seem to promote these differences, it is expected that a significant reduction in the incidence of breast cancer tumors could be reached if it were possible to control oxalate production or its carcinogenic activity.

Oxalate induces breast cancer – 2015 

Hopefully, in my case, just passing through as I detox (or perhaps I am shifting oxalates out of deep storage) but its one to keep my eye on.

Burning skin

Sudden rashes, red patches, hives, burning sensations often without any sign of discolouration, crawling or electric sensations and touch or clothing sensitivity (allodynia) have been long running issues for me and some of those became severe plus much more visible (notably, the sudden raised rashes to face and chest) over the summer. All of them have been connected to oxalates. I will report back on any progress!

Pet theory: do oxalates in body tissue respond to changes in the ionosphere?

The term “ionosphere” tends to refer to conditions somewhere out there above our heads, on the borders of space but, really, we all live in an ionosphere that affects us more than we think about.

Its well known in modern health circles that the ionic atmosphere in a room affects health; its the premise behind ionisers, which profess to create the healthy atmosphere of a woodland waterfall in your living space, as compared to the extremely unhealthy atmosphere of rooms where computer screens and televisions are left on all day, omitting positive (yes, I never can wrap my head around the fact that negative ions are the healthy ones) ions.

That I respond minutely to these as a highly sensitive person is a given these days and I have had ionisers installed in my house for many years but sometimes conditions override all my efforts, for instance prior to a thunder storm or at full moon, its often as though my skin is crawling.

Without getting into all the ins and outs of ions, I am left wondering whether these conditions somehow induce an oxalate dump in the human body and it is something I would dearly love to unearth some hard science about. After all, oxalates are passionately attracted to positive ions; its why they grab onto calcium and and other minerals. It would certainly help provide a logical reason why changes in the atmosphere, triggered by space and terrestrial weather conditions, and yes full moon which is well known to alter the ionic atmosphere, trigger off such overt symptoms of nerve, skin and muscle pain in my case and that of many others, anecdotally. This, about the moon, explains the effect:

“At the time of the full moon, there are more positive ions at the Earth’s surface which is why people seem to suffer with more stress. An influx of positive ions causes blood to flow more slowly and so oxygen in the blood is not carried to the muscles and brain as efficiently.”

The Sun and Moon’s Influence on Us and on the World We Live

These kinds of inside-out ionic effects must surely have some interaction with oxalates stored in tissue and I would dearly love to find out more. Incidentally, there are a lot of articles and anecdotes about autism symptoms becoming much more severe around a full moon and this oxalate factor feels like another clue waiting to be explored.

Tinnitis?

Time will tell whether the oft-touted link between oxalates to tinnitus will play-out for me but mine went from intermittent to permanent and severe just over two years ago and I would love to think there is a solution.

Resources

Sally K Norton’s website full of oxalate resources

Low Oxalate Diet Information – extremely useful resource including food lists, with associated Facebook support group TLO (Susan Owens manages both)

Oxalates Control is a major new factor in autism therapy – The Great Plains Laboratory, Inc.

How Oxalates Ruin Your Health – Interview (transcript) with Dr William Shaw

The Damaging Effects of Oxalates on the Human Body – Mercola

Low Oxalate Low Histamine Diet – The Missing Link? – Healing Histamines blog

How to Succeed At Reducing Oxalate on a Gluten-free Diet – a really helpful article, including adapting your flours

SHOUT OUT about Oxalates. Good news – Ehlers-Danlos Syndromes – a really positive outcome, and some advice, from someone with EDS who tried the low oxalate diet

Oxalates and the Mast Cell Activation Syndrome | Histamine Intolerance Connection – Mast Cell 360

Oxalates Part II: Addressing when you have Mast Cell Activation Syndrome and Histamine Intolerance – Mast Cell 360


Disclaimer:

This blog, it’s content and any material linked to it are presented for autobiographical, anecdotal purposes only. They are not meant as advice. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. The material and opinions shared are anecdotal and should not be considered to be medical advice or diagnosis. This article does not constitute a recommendation for the treatment or choices described and the effects related are my own anecdotes, not a prediction of how anyone else might respond. I do not advocate taking any of the supplements referred to or following any of the choices or steps outlined and suggest that you conduct your own enquiries with medical advisors. Please consult with a licensed healthcare professional if you have or suspect you might have a health condition that requires medical attention or before embarking on a new eating plan.

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