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Outsmart Endometriosis by Dr. Jessica Drummond

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outsmart endometriosis

Dr. Jessica Drummond, DCN, CNS, PT, is a good friend and colleague whose work in women’s health I highly respect. Her book, Outsmart Endometriosis (now available in paperback), is integrative, evidence-based, practical and empowering!

She is a leader in the field and her vast experience and compassion makes this a must-read. As a nutritionist working with women with anxiety, I am thrilled to have this comprehensive evidence-based book as a resource for those in my community who are on their endometriosis healing journey, and for practitioners who work with women with endometriosis.

Here is the official book blurb:

Endometriosis does not have to ruin your career.

Wouldn’t it be nice to stop worrying about how your endometriosis symptoms are going to hold you back from hitting your career goals? Or to have tools that you can use to reduce your pain and manage your energy so you don’t have to miss out on important opportunities? Sometimes, it can feel like endometriosis is controlling your life.

Sought-after endometriosis, pelvic pain, and nutrition expert Dr. Jessica Drummond, DCN, CNS, PT, has helped thousands of women relieve their pelvic pain in over twenty years of practice. In Outsmart Endometriosis, she offers not another “one-size-fits-none endo diet,” but a comprehensive approach to managing your symptoms using simple, repeatable strategies, and without having to wait for an appointment with your doctor.

In Outsmart Endometriosis, Dr. Drummond can help you to:

  • Stop missing important work meetings or deadlines because of your endometriosis pain, fatigue, anxiety, and/or digestive symptoms
  • Let go of your worries about your fertility
  • Clear your brain fog so you can do your best work
  • Get control over your symptoms so you can feel more comfortable, and no longer just power through or be forced to quit
  • Build a team of the right professionals to support you along the way

Read Outsmart Endometriosis and become the boss of your symptoms and your career.

Get your copy on Amazon here (my Amazon link) or from Target, Barnes and Noble or independent bookstores.  You can also download book bonuses here.

Vitamin C causes oxalate formation resulting in pain, anxiety, and insomnia (when there is a defect in ascorbic acid or oxalate metabolism)?

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vitamin c and oxalate

Supplemental vitamin C has many exceptional health benefits and causes no issues for a large majority of individuals. However if you have dietary oxalate issues, doses of vitamin C above 100mg to 250mg per day may be problematic and trigger pain, anxiety, insomnia, bladder issues and more. This blog, Coronavirus and vitamin C for immune support: new pain or more severe pain due to oxalate issues?, is part 1 of the series  which sets the scene and is a fact-finding article. Part 2, Oxalate crystal disease, dietary oxalates and pain: the research & questions (part 2), covers the research behind oxalate crystal disease.

Today we look at some of the research on vitamin C/ascorbic acid being a possible trigger for the formation of oxalates in certain instances. This paper, No contribution of ascorbic acid to renal calcium oxalate stones, has a good summary:

Even though a certain part of oxalate in the urine derives from metabolized ascorbic acid, the intake of high doses of vitamin C does not increase the risk of calcium oxalate kidney stones due to physiological regulatory factor: gastrointestinal absorption as well as renal tubular reabsorption of ascorbic acid are saturable processes, and the metabolic transformation of ascorbic acid to oxalate is limited as well.

But in the large-scale Harvard Prospective Health Professional Follow-Up Study, those groups in the highest quintile of vitamin C intake (> 1,500 mg/day) had a lower risk of kidney stones than the groups in the lowest quintiles.

This paper does however have this precaution:

Recurrent stone formers and patients with renal failure who have a defect in ascorbic acid or oxalate metabolism should restrict daily vitamin C intakes to approximately 100 mg.

My proposed interpretation of this

I’d like to propose an interpretation of this, based on what we know about oxalates. These are the individuals who should restrict daily vitamin C intakes to approximately 100 mg per day (or up to around 250mg per day – more on the range below):

1) If you are someone who is a recurrent stone former or is in renal failure with a defect in ascorbic acid or oxalate metabolism

2) If you are someone with dietary oxalate issues i.e. you have similar symptoms when consuming vitamin C as you do when consuming high oxalate foods. Could we consider that you be classified as having “a defect in ascorbic acid or oxalate metabolism?” I would say yes.

I’ve added #2 above because we need to keep in mind that many individuals who have issues with dietary oxalates are not necessarily stone formers and nor do they have renal failure.

Research is also lacking in this area as you can read in Oxalate crystal disease, dietary oxalates and pain: the research & questions (part 2).

An omission of the 100mg per day restriction

I would like to point out that the study mentioned above was referred to in an article on Dr. Andrew Saul’s site but for some reason the section about the 100mg daily restriction was omitted from the article. It may have something to do with the fact that the author firmly believes that no-one has oxalate issues with any dose of vitamin C. In fact, he even jokingly makes this comment in the article:

Is some clown still trying to tell you that vitamin C is somehow dangerous? Or that you shouldn’t take more than 200 mg/day?

If you are someone who does experience pain when consuming vitamin C (like I do), I’m pretty sure you don’t find this comment amusing.

Vitamin C intake leading to pain, anxiety, insomnia, low mood and bladder issues

Here is some additional feedback from a question I posted on Facebook. This is the question I posted:

I’ve been sharing here about vitamin C being an issue for some folks who have oxalate issues and seeing an increase in pain. I’d love to hear if you upped your vitamin C intake for immune support and saw your mood take a dive or your anxiety increase or your sleep get worse? Vitamin C typically helps because it’s a cofactor for making neurotransmitters like serotonin and GABA and tyrosine but too much of a good thing is not good! Did you also have increased or new pain (as well as anxiety, low mood and insomnia)?

Here are some of the responses from folks who shared about pain, anxiety, insomnia, low mood and bladder issues:

  • Fay shared this: “Yes increased pain, insomnia and anxiety with increased C and mouth sores to boot. Taking liposomal C and Ester C to boost antioxidants for health reasons and pain in elbows and knees. Not sleeping well at all either.”
  • Lica shared this: “Yes increased anxiety…never thought of it before…felt a bug coming on and took c for a few days…yup anxiety.”
  • Nicola shared this: “Increase in body pain, burning bladder, sleep affected and low mood ( not something I usually suffer with). I was taking liposomal C then increased the dose and also added Ester C as I had symptoms of covid. I was taking 1-2g a day of liposomal previously as a preventative and increased to 4g plus 4g of Ester. Only did it for a couple of days. Stopped three days ago and pain is starting to subside but no sleep last night. So I will continue with a break for now and add a very low dose again perhaps of Ester C and see how I go.”

I really appreciate these women sharing their experiences so we can all learn!

What is the upper limit of vitamin C for individuals with dietary oxalate issues?

I’m sure you’re wondering about the various dosages mentioned: the study mentions 100mg per day,  Dr. Andrew Saul’s clown comment says 200mg per day and Susan Owen’s TLO Facebook group recommends no more than 250mg per day. You’ll need to figure out what the upper dose of vitamin C you can tolerate – by trial and error.

The big disconnect is always the mention of kidney stones

This is one of many similar studies on the topic of ascorbic acid/vitamin C and oxalates. There are also many studies and articles stating that vitamin C does NOT play a role in the formation of oxalates and cause kidney stones. The big disconnect is always the mention of kidney stones. The missing piece – in the research and in many articles – is that you can have issues with dietary oxalates AND vitamin C when there is no kidney disease/no kidney stones.

I have a number of additional oxalate blog posts planned so please let me know what else you want to hear about.

Here are the 2 previous blog posts on this topic of oxalates, vitamin C and pain:

Please also share your vitamin C oxalate story and how you figured it out (and if you react in a similar way to dietary oxalates).

Let us know what your ideal dose is (and which dose caused issues) and what form of vitamin C and product name you use/used. Feel free to share if you also have a history of kidney stones.

Feel free to post your questions here too.

5-HTP can raise salivary cortisol: does this cause a “wired-tired” feeling?

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5-htp salivary

Are you aware that 5-HTP – an amino acid supplement that supports serotonin levels – can raise cortisol levels and leave you feeling “wired-tired”? You may be able to relate to this if you’ve ever used 5-HTP to help with anxiety and insomnia and ended up feeling more anxious and more wide-awake despite your exhaustion and need for sleep. You feel “wired-tired” and it’s not pleasant at all.

Both 5-HTP and tryptophan, used as supplements, help to boost serotonin levels so you can feel happy, calm, sleep well and not crave carbs in the afternoon/evening. They also help with panic attacks and phobias, lack of confidence, depression, negativity, imposter syndrome, PMS, irritability, anger issues, pain/fibromyalgia, TMJ and anger. I typically have my clients with low serotonin symptoms start with a trial of tryptophan because I see such excellent results with this amino acid. That being said, some people simply do better on one versus the other and you may do better with 5-HTP.

However there is one big caveat with 5-HTP. I don’t recommend 5-HTP when a client has elevated cortisol levels because we know that it can raise cortisol levels in certain individuals. This can leave you feeling agitated, cranky, as well as wired and yet tired at the same time.

In this 2002 study, L-5-hydroxytryptophan induced increase in salivary cortisol in panic disorder patients and healthy volunteers

Salivary cortisol levels were measured in 24 panic disorder patients and 24 healthy volunteers, following ingestion of 200 mg L-5-hydroxytryptophan or placebo.

The experiment was carried out in the afternoon, “when basal cortisol secretion is more stable.” The first saliva sample was obtained at 1pm and the subjects ingested the 200mg 5-HTP at 2pm. Additional saliva samples were obtained at 2:30pm, 3:00pm and 3:30pm.

They report the following:

A significant rise in cortisol was observed in both patients and controls following ingestion of L-5-hydroxytryptophan. No such effects were seen in the placebo condition.

Here are a few additional comments and my thoughts:

  • This study was done to find evidence for “serotonin receptor hypersensitivity in panic disorder” and not specifically to test for the effects of 5-HTP on cortisol levels but it serves this purpose rather nicely (and it’s one of many similar studies, some of which measure plasma cortisol levels)
  • Keep in mind 200mg of 5-HTP is a large starting dose. It’s typical to start with 50mg so may be a factor to consider
  • In this study they did not assess cortisol levels beyond the 1.5 hours from ingestion of the 5-HTP. It would have been useful to see when levels started to go down
  • We would want to consider the ramifications of using 5-HTP for weeks (whether it’s 50 or 200mg). What impact would that have on cortisol and the adrenals? (I am not aware of a study like this having been done)
  • I’m also not aware of a study being done with 50mg but if you feel worse and feel “wired-tired” with 5-HTP and switch to tryptophan (the equivalent starting dose is 500mg) and your anxiety and other low serotonin symptoms resolve then you have found your solution
  • You may be wondering: “could I use 5-HTP to raise my low cortisol levels”? Theoretically yes and possibly very short-term. But I would question the timing since 5-HTP and tryptophan are best dosed mid-afternoon and later. This is when we would expect our cortisol levels to be on the downward slope as we end our day. I’d also want to nourish the adrenals with B vitamins and herbal adaptogen and remove the trigger/s that are leading to low cortisol.

If you suspect low serotonin symptoms and are new to using the amino acids and do not have my book I highly recommend getting it and reading it before jumping in to taking supplements: The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings.

There is a complete chapter on the amino acids and one for pyroluria, plus information on real whole food, sugar and blood sugar, gluten, digestion and much more.  If you’re not a reader there is now also an audible version.

Here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution and additional information on Anxiety and targeted individual amino acid supplements: a summary

Please also read and follow these Amino Acid Precautions.

This lists The Antianxiety Food Solution Amino Acid and Pyroluria Supplements that I use with my individual clients and those in my group programs.

Have you used 5-HTP with success? Or have you used it and felt “wired-tired”? Have you correlated the success or failure of your 5-HTP use with your salivary cortisol levels?

If you switched from 5-HTP to tryptophan did you have success with that?

If you’re a practitioner is this something you see with your clients/patients and take into consideration?

Feel free to post your questions here too.

I am an emotional eater and eat sugar as a reward and find myself craving it when I am fatigued. Do you have clients on more than one amino acid?!

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emotional eating and amino acides

This is a question I received from a stressed out mom in my community. She has identified when she craves sugar and the emotion connected to her cravings. Now she has questions about how to trial and use amino acids to stop her cravings, get her energy back and feel emotionally stable:

I know I am an emotional eater, I know I eat sugar as a reward and I do find myself craving it when I am fatigued. I also seem to crave it after a very savory meal; especially one with garlic. What is THAT about?! Do you have clients on more than one amino acid?!

I have been a caregiver for my son (multiple disabilities) for 30 years; he has uncontrolled seizures and my husband has PTSD. It is a stressful household.

This is what I shared with her about the brain chemical imbalances and amino acids:

  • Many of my clients need more than one amino acid but it’s best to trial one at a time. When I hear my client say they eat sugar as a reward we immediately consider a trial of DPA (d-phenylalanine) especially if they are also overly emotional/weepy and also have physical pain.
  • When I hear my client say “I do find myself craving sugar when I am fatigued” we consider low catecholamines and a trial of tyrosine especially if they also have poor focus, low motivation and a flat mood. If the fatigue is caused by low blood sugar this can cause fatigue, irritability/crankiness and anxiety and a trial of glutamine may be a better option. If the DPA helps the emotional-reward-eating after a week or two, then we may do a trial of tyrosine and/or glutamine (one at a time) and use them in addition to the DPA.
  • When I hear “sugar cravings after a savory meal” we consider low serotonin and a trial of tryptophan if it’s after lunch or dinner. Serotonin dips in the afternoon and evening triggering this type of craving. With low serotonin we also see worry, anxiety, depression, anger, PMS, insomnia and irritability. Let’s assume the DPA helps and the tyrosine helps with the fatigue, then we’d consider a trial of tryptophan and add that.

So yes I do have many clients needing more than one amino acid! But we always trial one at a time and find a good baseline before adding the next one or doing a new trial if the first one didn’t give expected results.

With regards to which amino acid trial to do first, I always ask my client which area is causing the most problem or distress in your life and we start there. Since she mentioned emotional eating and then fatigue and then cravings after a savory meal, this sequence may be best for her. But addressing the fatigue with tyrosine first may be a better approach for someone else.

With regards to cravings after a savory meal we also look into how much protein and healthy fats the client has in that meal. I don’t know why garlic would be a trigger other than it’s possibly stirring up candida. Candida is also a big factor when it comes to sugar cravings, fatigue and feeling sad/emotional so we would also possibly need to address this too.

Adrenal and sleep support is also key and I recommend this resource for additional caregiver support for her – The psychological trauma of coronavirus – nutritional support for doctors, nurses and their loved ones.

For her husband’s PTSD I recommend this resource – PTSD from 3 tours in Afghanistan: Can GABA help with the anxiety?

For her son’s seizures I recommend this paper, Ketogenic Diet and Epilepsy: What We Know So Far, and working with a practitioner who could offer consultation and guidance on a ketogenic diet.  Another useful resource is this one – Use of Cannabidiol in the Treatment of Epilepsy: Efficacy and Security in Clinical Trials.

If you suspect low levels of any any of the neurotransmitters and are new to using the amino acids and do not have my book I highly recommend getting it and reading it before jumping in to taking supplements: The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings.

There is a complete chapter on the amino acids and one for pyroluria, plus information on real whole food, sugar and blood sugar, gluten, digestion and much more.  If you’re not a reader there is now also an audible version.

Here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution and additional information on Anxiety and targeted individual amino acid supplements: a summary

Please also read and follow these Amino Acid Precautions.

This lists The Antianxiety Food Solution Amino Acid and Pyroluria Supplements that I use with my individual clients and those in my group programs. You’ll find DPA, tyrosine and tryptophan listed here.

Please share your emotional eating and sugar craving success story if you have one using DPA.

And let us know if tyrosine helps with your fatigue and low-energy driven sugar cravings?

And does tryptophan help your afternoon and evening sugar cravings?

Feel free to post your questions here too.

Tryptophan ends TMJ pain, headaches and worry, and improves mood and sleep: a success story

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tryptophan success story

Today I’m sharing a success story on how the amino acid tryptophan, taken as a supplement, ends  TMJ (temporomandibular joint) pain and headaches in a woman in my community. She had the added benefits of an improved mood and less worrying and her sleep improved too.

There is evidence to support the low serotonin connection to TMJ and pain like fibromyalgia and I share that research below.

Before I share the success story, in case you’re new to neurotransmitter imbalances, the other symptoms we see with low serotonin are the worrying-type of anxiety, panic attacks and phobias, lack of confidence, depression, negativity, imposter syndrome, PMS, irritability, anger issues, insomnia and afternoon/evening cravings. Tryptophan can be used to boost serotonin levels and improve these symptoms as you’ll see below.

Right after speaking on the recent Trauma and Mind-Body Super Conference, Renee shared her wonderful success story on Facebook:

Out of all the interviews I felt yours gave the most actionable steps. I was taking amitriptyline for TMJ and didn’t like the side effects, however what other options did I have? Not many according to my GP [general practitioner]. Luckily I found your suggestion of tryptophan. And I can’t explain how much of a change it made! I weaned off the medicine and took tryptophan instead and not only did it help the TMJ but also helped me feel more even emotionally.

I am being referred for trauma therapy and I am optimistic that I will be discomfort free soon.

So huge thanks for sharing your knowledge. It helped me at a time when I was really starting to think there were no ‘natural’ options and conventional meds were all I could take.

I checked in with her, thanking her and acknowledging her wonderful feedback. I also asked how much tryptophan made this difference and how quickly she saw an improvement. And what side-effects she was seeing with the medication. She shared this:

I am a week into taking tryptophan, and I’m taking 500mg. I saw improvements with the TMJ within an hour of taking it. My jaw felt loose and I had no headaches, I also felt more ‘even’ mood wise. Like an underlying worry had gone. [worry is a classic symptom of low serotonin – more on that here]

I also had some stress yesterday that usually would have made me crumble, but instead I was able to stand up for myself and see subjectively the extent of the issue and resolve it. I am amazed!

My original medication (amitriptyline) had given me extreme dry mouth, which I found hard to manage, the headaches were also not relieved as much as I had hoped, plus I was having sessions of palpitations.

I haven’t had any palpitations from the day I started tryptophan whereas the dry mouth took some time to subside.

These really are wonderful results and typical that we’d see results this quickly with tryptophan if the root cause of the TMJ and headaches is low serotonin. It can sometimes take a few weeks to find the ideal dose but Renee found it with the initial trial amount of 500mg.

The tryptophan also improved her sleep (and the palpitations and dry mouth side-effects from the medication stopped):

I was struggling to get to sleep and stay asleep, suffering bouts of insomnia, prior to any medication. I still am sleeping well taking tryptophan which I am pleased about.

She did however share that the timing of the tryptophan was making her too sleepy too early in the evening and she was planning to shift the timing:

I am finding tryptophan is making me feel drowsy in the evening, so I am trying different times during the day to take it. Hopefully I can push back the tiredness to perhaps 8/9 at night to coincide with bedtime.

My advice to her was that I have my clients use tryptophan MA (mid-afternoon) and evening and if MA makes them too sleepy they just do an evening dose. That can be enough for TMJ the next day. Sometimes more than 1 x 500mg in the evening is needed for easing TMJ and headache pain that night and the next day too.

I did check with her about weaning off the medication as cold-turkey quitting of psychiatric medications are dangerous and not advised. She shared this:

I weaned off over 1 week, but I was only in it for 8 weeks in total before I found tryptophan.

A slow taper under the guidance of the prescribing doctor is always recommended (more on this for amitriptyline/Elavil withdrawal here).

Here is some research supporting this serotonin/TMJ connection:

…both temporomandibular disorders myalgia (TMDM) and fibromyalgia (FM) have been linked to central and peripheral changes in serotonin availability.” (tryptophan is not used in this study which also makes the serotonin/anxiety connection)

Over the 4 weeks of the study, there was a greater reduction in reported clinical pain and a greater increase in pain tolerance threshold in the tryptophan group than in the placebo group. The tryptophan group was given “three grams of tryptophan in conjunction with a high carbohydrate, low fat, low protein diet.”

If you suspect low serotonin symptoms and are new to using the amino acids and do not have my book I highly recommend getting it and reading it before jumping in to taking supplements: The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings.

There is a complete chapter on the amino acids and one for pyroluria, plus information on real whole food, sugar and blood sugar, gluten, digestion and much more.  If you’re not a reader there is now also an audible version.

Here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution and additional information on Anxiety and targeted individual amino acid supplements: a summary

Please also read and follow these Amino Acid Precautions.

This lists The Antianxiety Food Solution Amino Acid and Pyroluria Supplements that I use with my individual clients and those in my group programs.

We appreciate Renee sharing her success story. Please share your TMJ/headache tryptophan success story if you have one. And feel free to post your questions here too.

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

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oxalate crystal disease

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, vulvodyndia, 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:

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

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.