dietary oxalates

Ox bile as a supplement: to help counter the effects of dietary oxalates very likely caused by bile issues and poor fat digestion

March 15, 2024 By Trudy Scott 68 Comments

I’m using ox bile (as a supplement) to help counter the effects of dietary oxalates very likely caused by my bile issues and poor fat digestion.

I started with 125 mg ox bile with lunch and dinner and now I’m up to 250 mg at lunch and 375 mg at dinner. Many ox bile products are 500 mg but I decided to start low and go slow and also use an ox bile only product rather than ox bile combined with digestive enzymes.

I don’t know exactly what my liver or gallbladder issues are but suspect low bile production and/or sluggish bile flow.

I have an issue with dietary oxalates and using ox bile confirms my suspicions because I can feel it helping further with symptom reduction (foot and eye pain, and restless legs at night). Because of improved fat digestion, I’m encouraged it’s going to help with longer term bone health (I was recently diagnosed with osteoporosis), immunity, hormone balance and heart health too. I expect better absorption of healthy fats like omega-3 fatty acids, evening primrose oil and fat-soluble vitamins A, E, D and K (and D and K are so important for bone health).

Of course, all this means less oxalate absorption and a reduced impact of the sharp damaging crystals found in medium/high oxalate foods. Oxalates also bind to minerals like zinc, magnesium, and calcium so those mineral deficiencies should shift too.

Read on for a background on oxalate crystal disease, the research on conjugated bile acid replacement therapy (or ox bile supplementation) and oxalate/fat digestion mechanisms, and more about signs of bile issues and solutions. I also share what else I do to mitigate oxalate issues and improve fat digestion, and the ox bile product I am using.

Ox bile increases fat absorption and reduces oxalate absorption

This paper, Conjugated bile acid replacement therapy reduces urinary oxalate excretion in short bowel syndrome, explains that “Soluble oxalate is hyper absorbed by the colon leading to hyperoxaluria and an increased risk for renal calcium oxalate stones and deposits” (and other pain issues – more on that below).

Using ox bile as a supplement (or replacement) with meals “increases fat absorption and thereby decreases calcium fatty acid soap formation and oxalate hyperabsorption.” What does this mean? When fat absorption is improved with ox bile supplements there is more calcium left to bind to excess oxalates in the gut and get rid of them in the stool i.e. less oxalates are absorbed.

I encourage you to read the above paper for a better understanding of the mechanisms.

I do appreciate this team of researchers who have highlighted this approach to help with oxalate issues. Keep in mind I’m experimenting and extrapolating from this single case study of someone with short bowel syndrome and based on what I already know about bile/fat digestion, my own oxalate issues and symptoms of poor bile production/flow (see below).

I don’t have short bowel syndrome but there are a few related studies like this one from the same department, so I feel comfortable experimenting and tracking.

Other pain issues and my pain symptoms caused by dietary oxalates

Keep in mind that the increased absorption of oxalates also causes issues like joint and soft tissue pain, anxiety, restless legs, insomnia, bladder issues, vulvodynia, eye-poking (in autism), thyroid problems, osteoporosis, damage to the heart etc. even when there are no kidney stones. This is not recognized in kidney stone research but is seen extensively in clinical practice.

In 2012 I made the connection between oxalate intake and my excruciating foot pain – a combination of hot-burning-coals-pain and shards-of-glass-pain. The pain has always been worse at night and at its worst I was unable to sleep with severe restless legs. A few years later, I noticed my left eye being affected too, with scratchy discomfort and mild pain. There is also a goopy kind of discharge from the inner part of my eye and burning/redness crystal-like teariness on the outer parts of my eyes.

You can read more about my oxalate story and oxalate crystal disease on this blog – Oxalate crystal disease, dietary oxalates and pain: the research & questions.

It’s more than only ox bile replacement to help with oxalate issues

I say that ox bile helps further because this is a journey I’m on and there are many nutritional approaches that have been helping me over the years. My symptoms have reduced as I do eat mostly low oxalate with some medium oxalate vegetables from time to time, and occasional chocolate or carob (which are high oxalate).

I continue to finesse my use of calcium citrate at bedtime when my symptoms do flare. I am fortunate that I am able to eat cheese so this is another source of calcium for me.

I have pyroluria so I have long used vitamin B6 which is recognized to be helpful for some with oxalate issues. I suspect this may have prevented dumping when I first switched to low oxalate eating.

Signs of low quality bile from Anne Louse Gittleman

These are from her book, The New Fat Flush Plan:

Queasiness after a fatty meal (impaired bile flow)
Light-colored or floating stools (lack of bile output)
Nausea/motion sickness (not enough bile)
Dry skin and hair (lack of essential fatty acids)
Constipation (inadequate bile for lubrication)
Constant feeling of fullness
Inability to lose weight
Pain under the right rib cage (reflective pain from the gallbladder)
Hemorrhoids (congested liver)
Varicose veins (pressure from constipation due to thickened bile)
Pain between the shoulder blades (reflective pain from the gallbladder)
Bloating or gas
Headache over the eyes (gallbladder meridian passes over this region)
Bitter taste in the mouth after meals (sign of bile regurgitation)
History of prescription or recreational drug use (need for more liver and gallbladder support)
Sensitivities to chemicals
Easily intoxicated (need for more liver and gallbladder support)
Fibromyalgia (sign of liver and gallbladder overload)
Hypothyroidism (sign of deficient bile to stimulate active thyroid hormone in fat cells)

I’m adding these signs/related issues/conditions:

Fatigue
Itchy skin
SIBO/small intestinal bacterial overgrowth
Osteoporosis
History of gallbladder attacks or gallstones
Oxalate issues

In my Anxiety Summit interview with Anne Louise Gittleman she explains what bile is and why it’s so important (read here if you’re new to this).

What I’ve already done to improve my bile production/quality

Here is a quick summary of the advice Anne Louise Gittleman offers, with a note of what I’ve done. I share this to illustrate that I didn’t jump straight to ox bile supplementation/replacement:

Elimination of food allergies (I’ve done this)
Addressing low levels of hydrochloric acid or stomach acid (this is not an issue for me)
Controlling stress (this is ongoing)
Adding bitter greens to the diet (I do this as much as I can, avoiding medium/high oxalate bitter greens)
Hot lemon water in the morning (a favorite of the original Fat Flush Plan and something I’ve done for years)
Adding non-GMO lecithin from soy and sunflowers to your morning smoothie (I don’t do this)
Using a bile building formula that contains choline, taurine, beet root, inositol and methionine, and pancreatic lipase (I use taurine but can’t use beet root because it’s high oxalate; I did a 2 month trial of a lipase only supplement with no changes; I will likely experiment with choline, methionine and inositol in the near future)
Using castor oil packs (I plan to do this in the near future)

These are some of the other approaches that can also help:

Digestive bitters (it does help me and I continue to use it but it’s not enough)
Toxin removal (I’ve experienced the harmful effects of acute environmental toxin exposure and my daily use of taurine helped. I blogged about this here.)
Ongoing detox with infrared sauna (I use a Therasage portable sauna)
Ox bile supplementation/replacement (I chose to use ox bile to be sure it was a bile issue I was dealing with and I did many other interventions first.)

My observations when using ox bile supplementation

I have not had any severe pain flares and have not needed to use extra calcium citrate in the night. The other profound change was a dramatic increase in energy. A few months ago I thought my Lyme was flaring again as I was so exhausted in the afternoons. This exhaustion has dissipated.

In terms of digestive symptoms, I notice less queasiness after a fatty meal like roast chicken with the skin on or a fatty lamb slow cooker stew. The constant feeling of fullness, gas and bloating has improved too. I suspect ox bile is helping with SIBO because it’s antimicrobial. But I can’t be sure since I started berberine 6 months ago and noticed it reduced methane gas production.

I have yet to test out motion sickness on a boat trip but I haven’t been using wristbands in the car and have been fine. I had been having some unusual/new skin itchiness a few months ago and this has now resolved. I do have sensitivities to chemicals but I haven’t noticed any change yet.

I used my stool color as a gauge to whether the ox bile was working – as I increased the dose I noticed it got darker and I have no more floaters. My bowel movements are much easier (more lubrication) and I feel the urge to go more than before.

It will be interesting to see if longer term this helps with improving my bone density. It makes no sense that I have osteoporosis given I’ve been physically active all my life. I highly suspect my bile issues have been a factor since childhood and then got worse during perimenopause Research shows “Gallbladder emptying time is longer during the perimenopausal period.” Unfortunately kidney stones and oxalate issues ramp up in menopause so it’s the perfect storm. I will be discussing all this with my endocrinologist/bone density doctor and ideally do some testing to figure out what the bile issues are (the pancreatic elastase test was fine).

I do track carefully and only make one change at a time so I typically know what improvements I can attribute to what changes.

Ox bile product options

Allergy Research has an Ox Bile 125 mg product and a 500 mg product. You can purchase these from my online store (Fullscript – only available to US customers – use this link to set up an account).

If you’re not in the US, Nutricology has an Ox Bile 125 mg product and a 500 mg product. This is the brand I happen to be using. It can be purchased on iherb (use this link to save 5%).

In conclusion

I’d like to give a shout out to my colleagues… I first learned about oxalates from my dear friend Julie Matthews. Hearing her present at a conference helped me make the connection to my feet pain issues. She introduced me to Susan Owens, oxalate guru and researcher, and the TLO/Trying Low Oxalate group, and now I communicate regularly with them, the TLO moderators and members. And I met Sally K. Norton a few years ago. She is the author of this excellent book, Toxic Superfoods: How Oxalate Overload Is Making You Sick (my Amazon link).

Unfortunately no-one discusses the use of ox bile replacement/supplementation for those of us with oxalate issues and bile issues, and I suspect it’s an under-appreciated tool for those of us who continue to struggle. Hopefully this research and my results starts a discussion on the topic and further interest.

Sally K. Norton does mention a connection in her book: “The immune system has a method for shielding surrounding tissues from oxalate crystals; entrapping them with extruded DNA called a neutrophil extracellular trap (NET). These NETs forming around oxalates may contribute to gallstones and gallbladder “sludge”. If this is the case in my situation, then my lifelong issues with bile were likely made worse by my intake of medium- and high-oxalate foods.

I do hope that me sharing my personal experiments and healing journey helps you or someone you know. Honestly, I could write a book on oxalates and what I’ve learned over the last few years. There is so much to all this and even though it’s a “pain” to be affected like this it is fascinating. I do feel thankful to have dietary and nutritional “solutions.”

The next step for me is looking into and addressing my endogenous oxalate production i.e. oxalates that are produced internally vs oxalates that are ingested. Stay tuned for an update on this.

Do you have oxalate issues together with gallbladder/bile issues/fat digestion issues and how has ox bile supplementation helped you?

Has ox bile helped you with low bile production or sluggish bile – even if you don’t have oxalate issues?

If you’re a practitioner have you used ox bile with your clients or patients?

Feel free to share and ask your questions below.

GABA for bladder pain/interstitial cystitis and urgency, IBS pain and anxiety?

January 29, 2021 By Trudy Scott 19 Comments

Is there a place for using the amino acid GABA as a supplement to help with bladder pain/interstitial cystitis and urgency and also help with IBS (irritable bowel syndrome) pain – at the same time as easing physical anxiety caused by low GABA levels?

I’d like to share some quotes from this commentary, GABA_B receptors in the bladder and bowel: therapeutic potential for positive allosteric modulators?

The bladder pain syndrome (or interstitial cystitis/painful bladder syndrome) is a spectrum of urological symptoms characterized by frequency, urgency and pain on bladder filling.

Bladder pain syndrome is often present in those who have IBS and abdominal pain and the authors mention the role of GABA in both:

Of further note is the co-morbidity between bladder pain syndrome and other functional pain syndromes, in particular, irritable bowel syndrome, a functional gastrointestinal disorder associated with visceral abdominal pain and altered bowel habit.

… it is tempting to speculate that GABA_B receptor positive allosteric modulators may display efficacy in not only functional pain disorders of the bladder, but also of the bowel, through modulation of either central and peripheral GABA_B receptors, or both

Positive allosteric modulators increase the activity of the receptor so in this case they are referring to increasing the activity of the GABA_B receptor, reducing both bladder pain and gut pain.

This commentary and the original paper refer to ADX71441, which has been shown in animal studies to be “a novel positive allosteric modulator (PAM) of the GABA_B receptor that has shown encouraging results in pre-clinical models of anxiety, pain, overactive bladder and alcohol addiction.”

We know GABA eases anxiety and pain and is extremely beneficial when it comes to alcohol and other addictions. In a recent blog post I shared how PharmaGABA eases physical anxiety in a young man who has recently given up Adderall, alcohol and nicotine.

And given that depression, anxiety and stress is higher in women with urinary incontinence it makes sense that an amino acid such as GABA may also help ease some of the symptoms of bladder pain syndrome when low GABA is a factor.

Depending on the root cause/s it’s likely addressing low serotonin, low endorphins and low vitamin D may play a role too. Of course, a full functional medicine and nutritional work up and review of diet is key too. Bladder dysfunction is seen in up to one third of celiac patients. This can cause leaky gut and nutritional deficiencies leading to low levels of neurotransmitters such a GABA and serotonin. Dietary oxalates can often be a factor with bladder issues and pain.

Considering all of this in conjunction with learning from/working with a pelvic floor physical therapist is key. I highly recommend someone like Isa Herrera, MSPT, CSCS who hosts online masterclass training sessions for those with pelvic health issues. Her next series airs online mid-February and you can learn more and register here.

Here are some related blog posts that you may find helpful:

How GABA eases agonizing rectal pain and spasms in under 2 minutesProctalgia fugax is described as a condition that leads to rectal spasms and sharp fleeting pain in the lower rectum or anus….and GABA can ease the severe pain or prevent the spasms before they get severe

How to address rectal spasms with GABA, pelvic floor work, gluten removal and squats

GABA reduces the visceral pain of IBS & SIBO, eases anxiety and helps with insomnia

In case you’re new to GABA you can read more about it here: GABA for the physical-tension and stiff-and-tense-muscles type of anxiety.

The supplements blog lists GABA products I use with clients and recommend to those in my community.

I’m proposing that there is a place for doing a trial of the amino acid GABA (as a supplement) to help with bladder pain/interstitial cystitis and urgency, especially when there are symptoms of low GABA. If GABA helps to ease the visceral pain caused by IBS/SIBO, it may also help with bladder pain.

Have you observed less bladder pain when using GABA for easing physical symptoms of low GABA anxiety (stiff and tense muscles, overwhelm, lying awake tensely at night, anxious and using alcohol to self-medicate in order to calm down)?

Have you noticed any reduction in bladder urgency when using GABA for anxiety?

Do you also have IBS pain or SIBO (small intestinal bacterial overgrowth) pain that is eased by GABA?

Have the following helped: going gluten-free, lowering oxalates and/or working with a pelvic floor physical therapist?

If you’re a practitioner have you made any of these observations?

Please do share in the comments below and let me know if you found this helpful, what else has helped you or if you have questions.

Oxalate crystal disease, dietary oxalates and pain: the research & questions

June 26, 2020 By Trudy Scott 143 Comments

This blog post came out of my quest for finding a medical explanation/term for my own pain caused by dietary oxalates and a desire to gain a better understanding for my clients who experience similar pain. It’s been on my writing list for some time and I’ve been gathering articles and research but the current coronavirus pandemic and recommendations for high vitamin C intake had me concerned enough to blog about it and ask for feedback from my community.

This is the blog, Coronavirus and vitamin C for immune support: new pain or more severe pain due to oxalate issues?, where I pose the question about recent increased intake of vitamin C or the addition of large doses for immune support and increased pain: joint pain, eye pain, foot pain, vulvodynia, bladder issues, insomnia, gut pain, kidney pain, changes in thyroid health/labs, bone pain etc? The feedback on this blog and on Facebook has been huge and confirms the connection. Thank you if you’ve already contributed to the discussion!

Today I’ll share an overview of oxalates, my pain issues with dietary oxalates, a deeper dive into the condition called oxalate crystal disease (with some of my insights and questions), and the autism and atherosclerosis research. It’s by no means a comprehensive blog on all things oxalates but rather a way to try and connect some dots and pose some questions for going deeper.

The next blog will address my vitamin C/oxalate/pain story and the research on vitamin C, oxalates and pain, together with questions.

Oxalates defined and food sources

Before we review oxalate crystal disease, let’s define calcium oxalates. Julie Matthews, my good friend and colleague and an oxalate expert shares this in her blog, Oxalates: Their Influence on Chronic Disease

Oxalates present in our body as sharp crystals or crystalline structures with jagged edges that cause pain, irritation, and distress. They can bind with certain minerals; particularly calcium and magnesium, as well as iron and copper

You’ll find many different lists of low, medium and high oxalate foods. When I started eating low oxalate I found Susan Owen’s site simple and very helpful. I then joined the Trying Low Oxalates Facebook group for support and feedback.

In summary, these are the common medium-oxalate and high-oxalate foods that many folks have problems with: nuts, nut-butters and nut-flour (something to watch when eating Paleo or GAPS), wheat, chocolate, kiwi fruit (very high – see the raphides image below), star fruit (also very high), beets, potatoes, legumes, berries, spinach and soy.

You can see why these needle shaped calcium oxalate crystals found in kiwi fruit could inflict pain. This is just one example – there are many different shapes of calcium oxalate crystals.

raphides purified from kiwifruit — Raphides purified from kiwifruit. Raphides, needle shaped calcium oxalate crystals, were collected from kiwifruit homogenate through heavy media separation using a dense CsCl solution. (A) The SEM image of purified raphides (x400). Shared from: Synergistic Defensive Function of Raphides and Protease through the Needle Effect via Creative Commons.

My oxalate story: severe foot pain and eye pain

I personally had severe dietary oxalate issues in 2012 which manifested as excruciating foot pain. It was a combination of hot-burning-coals-pain and shards-of-glass-pain. It was just after my book, The Antianxiety Solution (my Amazon link), came out. Due to my book tours and events, I would be on my feet all day presenting, often for 3 full consecutive days, so I figured that must be the reason. When I travelled, I took a blender and made smoothies with berries, ate plenty of healthy nuts as my snacks and took kale chips with me to make sure I was getting my greens. Kiwi fruit was a favorite of mine!

I was eating a high oxalate diet and had no idea until I heard Julie present at an Integrative Medicine for Mental Health Conference on dietary oxalates and autism. A light-bulb went off and then I worked with her to learn about oxalates and figure out if it was in fact because of oxalates and sure enough, as soon as I removed high and medium oxalate foods the pain resolved. Note: the advice is NOT to remove all high and medium oxalate foods at once because dumping can occur. I was fortunate that this didn’t happen with me, possibly because of the vitamin B6 I was already taking as part of the pyroluria protocol.

When I eat a low oxalate diet I do really well. However, more recently dietary oxalates have been causing me eye pain when I have a treat like eggplant or carob. It starts out as a kind of scratchy discomfort and mild pain and then gets worse and worse. I also have a goopy kind of discharge from the inner part of my eye and burning/redness crystal-like teariness on the outer parts of my eyes. I recently had one very severe incident where the eye pain in my left eye was agonizing for about 2 hours. I was beside myself and tried GABA, DPA and tryptophan for an attempt at pain relief – with no success. When I took 500mg of vitamin B6 the pain eased immediately.

The theory is that oxalates cause issues where you have a weakness. I injured my left eye walking into a low tree-branch while rock-climbing 15 years ago, so I suspect this is why my left eye is more severely affected.

Oxalate crystal disease

The condition “oxalate crystal disease” is the closest explanation I’ve found that explains the pain I’ve experienced and makes the most sense, other than the fact that all the studies mention kidney disease and yet I don’t have kidney disease and have never had kidney stones. I’ve also never had a problem with my estimated Glomerular Filtration Rate (eGFR). In case eGFR is new to you it measures how well your kidneys filter the wastes from your blood and is the best overall measure of kidney function/damage.

This paper, Update on oxalate crystal disease, summarizes it:

Oxalate arthropathy is a rare cause of arthritis characterized by deposition of calcium oxalate crystals within synovial fluid. This condition typically occurs in patients with underlying primary or secondary hyperoxaluria. Primary hyperoxaluria constitutes a group of genetic disorders resulting in endogenous overproduction of oxalate, whereas secondary hyperoxaluria results from gastrointestinal disorders associated with fat malabsorption and increased absorption of dietary oxalate. In both conditions, oxalate crystals can deposit in the kidney leading to renal failure. Since oxalate is primarily renally eliminated, it accumulates throughout the body in renal failure, a state termed oxalosis. Affected organs can include bones, joints, heart, eyes, and skin. Since patients can present with renal failure and oxalosis before the underlying diagnosis of hyperoxaluria has been made, it is important to consider hyperoxaluria in patients who present with unexplained soft tissue crystal deposition. The best treatment of oxalosis is prevention. If patients present with advanced disease, treatment of oxalate arthritis consists of symptom management and control of the underlying disease process.

Let me break this down because I’ve had to look up terminology and read and re-read papers in order to get a better understanding of things:

#1 Oxalate arthropathy is a rare cause of arthritis characterized by deposition of calcium oxalate crystals within synovial fluid.

Oxalate arthropathy is a disease of the joints caused by oxalates depositing in the synovial fluid of the joints. The paper states it is a rare cause of arthritis, but I suspect it is much more common given what we’re seeing clinically.

Also, because all the research connects oxalate crystal disease with kidney disease, it may be overlooked when there is no kidney disease (more on that below).

Synovial fluid is the fluid between the joints that acts as a lubricant and nutrient source.

#2 This condition typically occurs in patients with underlying primary or secondary hyperoxaluria.

Hyperoxaluria occurs when you have “too much oxalate in your urine.”

#3 Primary hyperoxaluria constitutes a group of genetic disorders resulting in endogenous overproduction of oxalate and… secondary hyperoxaluria results from gastrointestinal disorders associated with fat malabsorption and increased absorption of dietary oxalate.

Primary hyperoxaluria is genetic and results in endogenous or internal overproduction of oxalate, causing too much oxalate in the urine.

The secondary hyperoxaluria description mentions “gastrointestinal disorders associated with fat malabsorption and increased absorption of dietary oxalate.” There are a number of other factors which I’ll address in a future blog.

According to this paper and others, secondary hyperoxaluria also results in too much oxalate in the urine.

#4 In both conditions, oxalate crystals can deposit in the kidney leading to renal failure. Since oxalate is primarily renally eliminated, it accumulates throughout the body in renal failure, a state termed oxalosis.

Affected organs can include bones, joints, heart, eyes, and skin.

Mayo clinic states oxalosis occurs if your kidneys fail. “Because your body can no longer eliminate the extra oxalate, it starts accumulating — first in your blood, then in your eyes, bones, skin, muscles, blood vessels, heart and other organs.”

My comment is that in some instances, oxalates accumulate in various parts of the body without kidney failure. I share more about this aspect and what we see clinically below, plus an autism and atherosclerosis study.

This paper, Oxalate crystal deposition disease, also mentions the following: “osteopathy, acute and chronic arthropathy with chondrocalcinosis, synovial calcification, and miliary skin calcium oxalate deposits and vascular calcifications that affect mainly the hands and feet.” The paper is focused on primary hyperoxaluria (and does also discuss the kidney involvement) but I’m including it because of the conditions listed. You may have received one of these diagnoses and not linked it back to dietary oxalates and/or vitamin C intake possibly playing a role.

The authors do report “systemic life-threatening cardiovascular, neurologic, and hematologic manifestations”, saying they are rare.

Calcium oxalates: anxiety, sleep, headaches, fatigue and other symptoms

Calcium oxalate crystals can also be found in the thyroid, and ear, leading to hearing loss under some circumstances.

Julie Matthews, in her blog, Oxalates: Their Influence on Chronic Disease, also shares that

Clinical studies and anecdotal experience indicate that oxidative stress, mitochondrial disruption and damage, and nutrient depletions, trigger widely varied symptoms including fatigue and inflammatory cascades, joint pain or pain anywhere in the body. Chronic low energy is very common because of a reduction in ATP in the mitochondria. Oxalates could be a hidden source of headaches, urinary pain, genital irritation, joint, muscle, intestinal or eye pain.

Other common oxalate-caused symptoms may include mood conditions, anxiety, sleep problems, weakness, or burning feet. Indicators can be digestive, respiratory, or even bedwetting for children.

What the researchers are saying – always kidney disease

I’ve reached out to a number of researchers, practitioners and labs and they all state that oxalate crystal disease only happens with kidney disease/kidney stones. This is what one researcher shared with me: “Plasma oxalate concentrations only elevate enough to cause systemic disease when there is significant kidney disease (typically GFR <20-30). I have never seen a significantly elevated plasma oxalate without chronic kidney disease.”

Could this be the case because they are kidney specialists and therefore only seeing patients who already have kidney disease?

The good news is that a number of them are intrigued and interested in learning more.

Oxalate crystals in autism and atherosclerosis without kidney issues

However, based on my own experience and according to many in this community and other communities like the Trying Low Oxalates Facebook group, pain issues related to dietary oxalate intake may occur without kidney issues/kidney stones, and often does.

These papers offer some support for what I suspect we are seeing clinically – systemic oxalate deposits can occur deposits without kidney stones or renal failure:

A Potential Pathogenic Role of Oxalate in Autism

Children with ASD [autism spectrum disorder] demonstrated 3-fold greater plasma oxalate levels … and 2.5-fold greater urinary oxalate concentrations. Despite significant hyperoxaluria no evidence of kidney stone disease…was observed

Atherosclerotic Oxalosis in Coronary Arteries

calcium oxalate crystals were observed within atherosclerotic plaques in the coronary arteries. Similar deposits were seen in the thyroid gland and other organs but not in the kidneys. None of the patients had chronic renal failure…. We suggest the phrase “atherosclerotic oxalosis” to describe this finding.

These are the disconnects I’m seeing in the research and questions I have:

Oxalate crystal disease is reported to be rare and it only happens with kidney disease/kidney stones – could it be more common than reported? As Julie states: “New science and clinical experience reveal concerns about oxalates that far exceed traditional kidney stone pathology.”
Should we be calling it hyperoxaluria. “too much oxalate in your urine” if the kidney is not involved? Or do we need to expand the definition of hyperoxaluria to include too much oxalate in other tissues outside the kidney and urine?
Could oxalate crystal disease with no kidney disease be a new syndrome that has yet to be widely and clearly identified in the research?

I mean no disrespect to the study authors and researchers by sharing my insights and questions here and in the section above. I appreciate the work they do and the opportunity to learn from them.

Searching through the literature on this has been extremely challenging because studies always refer to the kidney. It may well be that there is a perfectly logical explanation for much of this and someone has already gone through the research and has answers to all my questions. I am very willing to be enlightened so please do share if you’ve come across a good explanation.

Either way, please share your insights based on what I’ve shared in this blog and in relation to your experiences with pain caused by dietary oxalates and/or pain caused by vitamin C intake. I will be sharing this blog and the comments with the researchers and practitioners who are open to all this.

Read all posts in this series: