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Low oxalate success stories: resolution of joint/body pain, insomnia, peripheral neuropathy and can walk without a cane

By Trudy Scott 18 Comments

low oxalate success stories

I’d love to hear how switching to a low oxalate way of eating helped you. And what motivated you to go down this path? Was it pain, weakness, low energy, anxiety, insomnia, bladder issues and/or restless legs and painful feet? (or something else?) How quickly did you see results when making the dietary changes? And what would you say to someone who can’t even imagine a better, easier and pain-free life, and really doesn’t want to give up so many foods?

I’ve seen incredible results personally and my painful feet and restless legs/insomnia (and also severe eye pain in one eye) was my motivation. I’m a nutritionist and understand the power of nutrition and know what is possible. But I know it’s tough to grasp for many individuals.

I’m asking for a dear family member who uses a walker and can’t imagine life without her walker and that dietary changes could make a difference.

I posted the above on Facebook and here are some of the few incredible responses I received. I hope they inspire and motivate you if you’re just beginning this low oxalate journey, or if you have a family member you’re trying to inspire, educate and help.

Beth shared how stopping high oxalate foods – beets, sweet potatoes, almonds, swiss chard, and chocolate – enabled her to stop using her cane in just 2 weeks:

I had to use cane by the time I was 28 and could barely hobble. The pain was like ground glass in my joints. To take a flight I had to get a wheelchair at the airport and had to use the electric carts at the grocery because I couldn’t walk or stand due to the excruciating pain. This went on for a few years.

When I learned about oxalates and stopped beets, sweet potatoes, almonds, swiss chard, and chocolate and went down to only medium oxalate foods or lower, I was off the cane in 2 weeks. I didn’t know about dumping, and I got lucky, but now if I eat too many oxalates the only problem I get is pain in my fingers and toes.

I can personally relate to the ground glass pain she describes – the pain in my feet felt like a mix of shards of glass and hot coals. It’s a common description I hear from clients.

You may be familiar with the wonderful work of Beth O’Hara, functional naturopath and founder of Mast Cell 360. She shares this too: “ I see a lot of mold toxicity underlying oxalate issues due to leaky gut, nutrient depletion, and a few other factors.” 

Quick results for insomnia, bloating, stomach pain, peripheral neuropathy, body pain, brain fog, weird rashes and more

Nicola shared these wonderful results and the fact that her symptoms started to resolve quickly:

I had extremely quick results – a couple of days for some symptoms. But the thrill of the slow realization that I wasn’t actually seriously ill and brewing up ever more and newer ways to suffer, was the biggest relief. Lower stress also equals lower pain.

Insomnia first, then bloating, stomach pain, peripheral neuropathy, chest pains, body pain, swollen lymph glands, brain fog, TMJ pains, weird rashes, arthritis type pains in hands/wrists, headaches. The list is too extensive to enumerate. Suffice to say I no longer feel in imminent danger of contracting lymphoma, heart problems, Alzheimer’s etc.

I am 66 years old and I’ve only been on this TLO (trying low oxalates) journey for about 8 months or so and all those issues have mostly been resolved. Kind of magical really. Still dumping oxalates regularly as I had a long way to come having been mostly Paleo for about 8 years previously.

I think we are too quick to resign ourselves to the ‘aging’ process. I find I am getting younger by the month, the longer I am lowering oxalates. I may not look any younger, but to be living without chronic pain is quite the unexpected boon.

I have to agree with Nicola. It is quite magical to get results like this and too often we take for granted that as we age chronic pain is inevitable. As you can see from these stories it is not inevitable and you have much more control than you may realize!

So desperate with pain that she thought she was going to have to quit work

Yvonne found out she had oxalate issues after having DNA testing done. She shares this about her journey and motivation:

I had extreme shoulder pain, grainy eyes and in the end, I couldn’t take my thyroid meds without the shoulder pain or some other pain. I found my way to the group through DNA testing which …suggested that I may have an oxalate problem. I slowly started eating low oxalate, suggested by the TLO group.

I had been primarily consuming high oxalate foods trying to be healthy but my diet wasn’t diverse enough. I was eating nuts, celery, spinach, kale, chocolate and sweet potatoes.

I was cautious after going low oxalate and having my problems relieved. Over time I’ve gone back to eating medium oxalate foods and done well. I do feel like making my own kombucha and drinking it daily has helped.

Dietary oxalate issues are often worse for women as they start to go through perimenopause and into menopause because of lower estradiol levels (more on that below). Yvonne was 65 at the time.

She shares what motivated her to make changes: “I was so desperate with pain that I thought I was going to have to quit work. That’s the reason I had the DNA testing done.”

Belly pain (maybe bladder), left leg pain, scalp itch, eye stinging and itching reduced immediately

Cristina shared what she observed when switching to a low oxalate diet:

Noticed belly pain (maybe bladder), left leg pain, scalp itch, eye stinging and itching reduced immediately. But might have taken a couple of years to really unload excess oxalates. I still get the exact same symptoms if I have high oxalates, particularly carrots, potatoes and nuts.

With much appreciation for these women for sharing their stories and giving me permission to share. I do hope this is inspiring and motivating for you if you are navigating dietary oxalates and can’t yet imagine that a diet change could lead to a better life and symptom-free existence.  I’ll be sharing all this wonderful feedback with my loved one too.

Additional reading about dietary oxalates

If you’re new to the concept of dietary oxalates here are some blog posts for additional reading:

I’d love to hear how switching to a low oxalate way of eating helped you and which high oxalate foods were you eating?

What motivated you to go down this path? Was it pain, weakness, low energy, anxiety, insomnia, bladder issues and/or restless legs and painful feet (or some other symptoms)?

How quickly did you see results when making the dietary changes?

And what would you say to someone who can’t even imagine a better, easier and pain-free life, and really doesn’t want to give up so many foods?

If you have questions please share them here too.

Non-celiac gluten sensitivity manifestations outside the gut: foggy mind, depression, anxiety, neuropathy, joint pain, headache, fatigue and IBS

By Trudy Scott 2 Comments

non-celiac gluten sensitivity

Celiac disease is “a digestive and autoimmune disorder that can damage your small intestine. People with celiac disease might experience symptoms like diarrhea, bloating, gas, anemia and growth issues. Celiac disease can be triggered by a protein called gluten. Gluten is found in grains, like wheat, barley and rye” (and oats that are contaminated with gluten). This description by the Cleveland Clinic is well-understood and recognized.

However, what is less recognized and understood, is extra-intestinal (or outside the gut) manifestations of non-celiac gluten sensitivity.  A paper published in 2018, Extra-intestinal manifestations of non-celiac gluten sensitivity: An expanding paradigm lists a number of symptoms and conditions that gluten consumption may cause and/or contribute to, even when you do not have celiac disease.

These can include: ‘foggy mind’; psychiatric diseases such as depression, anxiety and even psychosis; gluten ataxia, gluten neuropathy and gluten encephalopathy (causing memory and cognitive problems); joint and muscle pain, and leg or arm numbness; headache and fatigue;  irritable bowel syndrome (IBS); autoimmune disorders; and and fibromyalgia.

This blog post highlights excerpts from the 2018 non-celiac gluten sensitivity paper and stories from real people who have experienced relief when removing gluten from their diets. And resources if you find you need neurotransmitter support to help break the addiction and not feel deprived.

This is from the abstract of the above paper:

Non celiac gluten sensitivity (NCGS) is a syndrome characterized by a cohort of symptoms related to the ingestion of gluten-containing food in subjects who are not affected by celiac disease (CD) or wheat allergy. The possibility of systemic manifestations in this condition has been suggested by some reports.

  • In most cases they are characterized by vague symptoms such as ‘foggy mind’, headache, fatigue, joint and muscle pain, leg or arm numbness even if more specific complaints have been described.
  • NCGS has an immune-related background. Indeed there is strong evidence that a selective activation of innate immunity may be the trigger for NCGS inflammatory response. The most common autoimmune disorders associated with NCGS are Hashimoto thyroiditis, dermatitis herpetiformis, psoriasis and rheumatologic diseases.
  • A possible neurological involvement has been underlined by NCGS association with gluten ataxia, gluten neuropathy and gluten encephalopathy.
  • NCGS patients may show even psychiatric diseases such as depression, anxiety and psychosis.
  • Finally, a link with functional disorders (irritable bowel syndrome and fibromyalgia) is a topic under discussion.

We see all this clinically so it’s wonderful to see this being addressed in the research. However, the authors are saying we need more research and better studies:

the novelty of this matter has generated an expansion of literature data with the unavoidable consequence that some reports are often based on low levels of evidence. Therefore, only studies performed on large samples with the inclusion of control groups will be able to clearly establish whether the large information from the literature regarding extra-intestinal NCGS manifestations could be supported by evidence-based agreements.

Until then we use what we know works clinically: a gluten-free diet and observation of symptom resolution. We also use amino acids to balance brain chemicals so we break the addiction and don’t feel deprived (more on that below). Nutritional deficiencies caused by damage to the gut/leaky gut also need to be addressed, as well as healing the leaky gut and dysbiosis.

I shared the study abstract on Facebook asking for feedback and the response was so overwhelming that I can only share some of the feedback. I will do follow-up posts sharing more detailed information from their healing journeys.

Caroline had bloating, pain and chronic sadness, and discovered  “joie de vivre”

Caroline confirmed that she has gluten sensitivity saying she stopped eating wheat in 2011:

Within a few months, my chronic sadness disappeared and I discovered the “joie de vivre”. It also allowed me to get rid of my swelling belly (bloating). Every evening I looked like a woman 2-3 months pregnant. [this likely falls into the irritable bowel syndrome category mentioned in the paper]

The pain in my joints also ended up disappearing.

I read so much about gluten once I started to realize it had changed my life to quit eating that stuff that now I’m convinced grains shouldn’t be part of human food, and I mean all grains (botanically speaking).

I think grains should at least be taken off all the menus in all hospitals, especially the psychiatric ones.

I adore her “joie de vivre” feedback and am so happy for her! I had this same feeling of pure joy when I went gluten-free. And I get so much feedback like this from clients who had no idea life could be so much better.

I also agree with her sentiment about gluten and grains being an issue too, especially in psychiatric settings.

Daphne was emotionally dysregulated with negative feelings and a pressure headache

Daphne shared what she calls an odd effect that she gets soon after eating bread: roiling emotions:

I get emotionally dysregulated. Negative feelings surface in various degrees, for me primarily anger and the reviewing of the incidents that caused it (aka ruminating thoughts?); less often sadness, disappointment, and overwhelm (that usually surfaces on its own anyway).

I also get what I call ‘bread head.’ I get a pressure headache from between my eyebrows, up the center of my head to my crown.

An additional effect: ‘the hangover’. Overnight the pressure headache subsides and the next day my whole head feels heavy and I am slower physically and mentally, and my hands in particular are achy

Also, I have had chicken bumps on my skin my whole life, until I stopped eating bread. I still have some, maybe from rice, potato and corn reactions. Starch is not my friend.

As I mentioned above, many folks are surprised at the emotional changes they see when eating gluten. Daphne called it an odd effect but her response is a very typical extra-intestinal (outside the gut) psychiatric response. And yes starches and grains are an issue for many folks.

Other feedback: fibromyalgia pain, brain fog, depression, cystic acne, anxiety, body aches, fatigue, PCOS and hypothyroidism

Here is some feedback from a few other women. As you can see the symptoms can vary per person:

  • “Removal of gluten and all grains has improved my fibromyalgia pain symptoms … The difference in pain was so dramatic that it was worth it.”
  • “It makes such a difference with my brain fog and depression! And cystic acne. If I have gluten, I have cystic acne for about 2 weeks.”
  • “My joint pain, anxiety, and depression are much improved when I avoid gluten (and corn.)”
  • “Yes! Within 15 min of ingesting gluten containing food I get all over body aches, fatigue and brain fog. It’s very unpleasant. I cut gluten out of my diet simply because I can’t function properly while eating it. I also have had episodes of reactive hypoglycemia from it too.”
  • “Removing gluten has cured my hypothyroidism. Also has improved my PCOS, anxiety and depression.”

Stay tuned for a follow-up blog with more from their healing journeys and additional insights from me.

Using the amino acids to help break the gluten addiction and feel less deprived

Sometimes it’s difficult to figure out why you crave or are addicted to gluten. It can be challenging to determine which part of your brain chemistry it’s affecting, and you may not associate cravings with mood issues.

Your drug-of-choice is something you self-medicate with and it is something that makes you feel good or “normal.” It could be starchy gluten-containing foods like bread or pasta or cookies. It could also be candy, chocolate, ice-cream, coffee, sodas, wine/beer, cigarettes, marijuana, a prescription medication like Prozac, street drugs, or even shopping or exercise.

Cravings for these substances (or behaviors) typically indicate a brain chemistry imbalance, so it’s very helpful to identify how the substances you crave affect you. This will help you determine which amino acids you might supplement to address the imbalance.

Use your “drug-of-choice” from your gluten or grain list (perhaps you love bread or chocolate chip muffins) and the chart below to help you determine what brain chemistry imbalance may be affecting you and which amino acid you may benefit from.

How you feel before How you feel after Brain chemistry imbalance Amino acid to supplement
Anxious or stressed Calm or relaxed Low GABA GABA
Depressed or anxious Happy or content Low serotonin Tryptophan or 5-HTP
Tired or unfocused Energetic, alert, or focused Low catecholamines Tyrosine
Wanting a reward or sad Rewarded or comforted Low endorphins DPA (d-phenylalanine)
Irritable and shaky Grounded or stable Low blood sugar Glutamine

Once you address that brain chemical imbalance, it’s easy to quit and you won’t feel deprived.

You can read more about why you crave on this blog post

Resources if you are new to using the amino acids as supplements

If you are new to using any of the amino acids as supplements, here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution (you can see all the symptoms of neurotransmitter imbalances).

If you suspect low levels of any of the neurotransmitters and do not yet have my book, The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings, I highly recommend getting it and reading it before jumping in and using amino acids on your own so you are knowledgeable. And be sure to share it with the practitioner/health team you or your loved one is working with.

There is an entire chapter on the amino acids and they are discussed throughout the book in the sections on gut health, gluten, blood sugar control, sugar cravings, self-medicating with alcohol and more. There is also an entire chapter on gluten and grains if this is new to you.

The book doesn’t include product names (per the publisher’s request) so this blog, The Antianxiety Food Solution Amino Acid and Pyroluria Supplements, lists the amino acids that I use with my individual clients and those in my group programs.

If, after reading this blog and my book, you don’t feel comfortable figuring things out on your own (i.e. doing the symptoms questionnaire and respective amino acids trials), a good place to get help is the GABA Quickstart Program (if you have low GABA symptoms). This is a paid online/virtual group program where you get my guidance and community support. There are many moms in the program who are having much success with their kids.

If you are a practitioner, join us in The Balancing Neurotransmitters: the Fundamentals program. This is also a paid online/virtual program with an opportunity to interact with me and other practitioners who are also using the amino acids.

With much appreciation for these women for sharing their stories. I’d love to get some of these published as case studies to further add to the evidence.

Do you have (or suspect you may have) non celiac gluten sensitivity (NCGS)?

And has gluten removal resolved any of the above issues? And have you seen an improvement in gut issues too?

Have you observed other improvements since eating gluten and/or grain-free?

Did you find the amino acids helped you break your addiction and feel less deprived?

Or are you stuck and still eating gluten and have no idea where to start on quitting? If this is you, would a webinar series help?

If you have questions please share them here too.

Bartonella infection in mom and both sons: anxiety, panic attacks, insomnia, inconsolable crying, irritability, ADHD, rage and pain

By Trudy Scott 32 Comments

bartonella infection

A mom and both her sons experienced a variety of emotional/mood and pain symptoms between them as a result of a Bartonella infection: anxiety, panic attacks, insomnia, irritability, inconsolable crying, ADHD, rage, eye pain, joint pain and pain in the legs. This family case study was published in Parasites and Vectors in 2013. I would love to see individual amino acids being used to ease some of these symptoms while the infection is being treated (more on this below).

Here are some of the emotional and mood-related symptoms they experienced:

  • the mother and both sons developed recurrent rash-like skin lesions, disruptive sleep patterns and both boys developed anxiety accompanied by episodes of inconsolable crying, irritability, and panic attacks
  • subsequent to the spider infestation of the apartment, [the mother] developed fatigue, memory difficulties, headaches, irritability, eye pain, insomnia, chest pain, blurred vision, shortness of breath, rash and skin lesions and anxiety attacks.
  • The youngest son… awakened at night crying and complaining of pain in his legs
  • The older son experienced increased irritability and rage episodes. In addition, the boy’s teacher indicated a lack of attention during class, and suggested that the child might have an Attention Deficit Hyperactivity Disorder (ADHD).

The youngest son also developed severe neurological symptoms and was diagnosed with Guillain-Barre syndrome and Chronic Inflammatory Demyelinating Polyradiculoneuropathy.

You can read the full investigation, timing, sequence of events and all the symptoms in the paper: Bartonella henselae infection in a family experiencing neurological and neurocognitive abnormalities after woodlouse hunter spider bites

Creating awareness, motivating, inspiring and educating

I’d like to highlight some of the reasons for sharing this paper:

  • creating more awareness about the emotional/mood symptoms that can occur with a Bartonella henselae infection
  • educating about this infection in general so other families can find solutions quicker than this family did
  • motivating and inspiring you to not give up looking for answers for you and your family – this mom suspected Bartonella infection after doing internet searches (almost 3 years after all this started)
  • creating more awareness about possible hosts other than ticks (in this case woodlice and woodlice hunter spiders)
  • highlighting how family members exposed to the same infection can have different symptoms and how some family members may not be infected at all (in this case the father was not affected)
  • highlighting that some individuals (the mom in this case) do not recall being bitten and yet still get sick
  • educating on how amino acids can offer much symptom relief during the investigation and treatment of the infection (more on this below)

Treatment with antibiotics and Chinese herbs

This family was successfully treated with antibiotics and other medications once it was determined Bartonella was the cause of their symptoms:

The parents report that the [youngest] child is actively socializing with other children and now runs and plays like he had never done before.

Following this antibiotic course, the mother reported substantial overall improvement and was almost symptom free. However, she continues to experience occasional irritability, confusion, dizziness, nausea, and pain involving the shoulder, hip and the bottoms of her feet.

One of the common symptoms of Bartonella is burning feet and this article, How to Put Out the Fire in Your Burning Bartonella Feet, mentions a herb from the Zhang protocol:

In Chinese herbal medicine, an herb called “houttuynia” is classified as “Clearing Heat and Relieving Toxicity.” This herb has been successfully used to treat Bartonella by a Chinese physician in New York named Dr. Q. Zhang. This herb has antibacterial and antiviral properties in addition to clearing heat and toxins. Fortunately this herb can be combined with other herbs to help relieve Bartonella symptoms.

I mention this because I am personally familiar with the Zhang protocol, having used it when working with Dr. Darin Ingels to address my Lyme disease (Borrelia). Dr. Ingels is the author of  The Lyme Solution and writes about the Zhang protocol in this excellent book.

Using amino acids to address anxiety, panic attacks, sleep problems, crying and pain

Individual amino acids, used as supplements, can offer much symptom relief during the investigation and treatment of the Bartonella infection, however they are seldom recommended. I would love to see this change and become the norm.

In this blog post, GABA helps with Lyme anxiety (while addressing the underlying disease), Tricia shares that “Lyme, Bartonella and Babesia are all known to cause anxiety and other psychological disorders ranging from mild to very severe.” She also shares that her daughter used GABA:

We’ve used Source Naturals GABA Calm sublinguals with good results. I learned about GABA helping anxiety and because I was treating my young daughter I purchased this because it was easy for her to take.

Looking at some of the emotional symptoms this family experienced, and how the amino acids could have helped:

I feel for this poor family. It certainly was a very complex family case and reflects the need to dig deep to find the root cause. And I appreciate the case being written up so more awareness can be created.

Have you or your family experienced something like this? And has your practitioner introduced you to the amino acids for some symptom relief while they are addressing the infection/s?

If you’re a practitioner working with Lyme disease and coinfections such as Bartonella, have you seen cases similar to this one? Do you use amino acids for some symptom relief while addressing the infection/s?

Feel free to post your questions and feedback in the comments below.

Coronavirus and vitamin C for immune support: new pain or more severe pain due to oxalate issues?

By Trudy Scott 113 Comments

coronavirus pain vitamin c

I have concerns regarding the use of high doses of oral vitamin C for boosting immunity – for a subset of susceptible individuals who have dietary oxalate issues. This is directly related to the many recommendations that have been and are being made in relation to the coronavirus pandemic, but it applies beyond the pandemic for anyone who has dietary oxalate issues.  My concerns relate to high doses of vitamin C making existing pain symptoms worse or even causing new pain symptoms in someone who is not aware they may have oxalate problems. This may include joint pain, vulvodynia, bladder pain, painful urination, eye pain, headaches, foot pain, stomach pain, general body pain, deep bone pain etc. All this can manifest as fatigue, irritability, anxiety, low mood and insomnia.

I’ve been promising to blog about this topic for over a month and have gathered enough information for a short book! I figured a good place to start is to share feedback I’ve received so far and ask for your feedback so we can learn and heal, educate and inform others going through this, as well as offer insights to researchers and doctors who are not aware of this issue (and sometimes say “based on biology it’s not possible”).

In the coming weeks, if there is enough interest, I’ll share additional information on mechanisms, what the research says and what the research says is not possible, labs, types of oxalate issues (there are many), the possible causes (there are also many) and long-term impacts beyond pain (for the thyroid, mitochondria, heart and more), the solutions, additional resources and  feedback from experts (of which there are very few – as of now I’ve been reading everything published by Susan Owens, Julie Matthews, Great Plains Labs and research published by kidney specialists).

Until then I’m humbly asking for your feedback. If you have no idea what oxalates are or are taking vitamin C with no issues, then please don’t worry. Things will become clearer as you read this blog and read follow-on blogs. I feel it’s really important to get this initial blog out rather than waiting until I have everything written up perfectly.

I’ve also been hearing feedback from folks who have now recovered from coronavirus or are still recovering, with many reporting lingering pain and fatigue. I am concerned some of that pain may be related to high doses of oral vitamin C or IV (intravenous) vitamin C leading to oxalate issues they may not be aware of.

My request to you – please share your vitamin C oxalate story

This is what I posted on facebook and I’ll simply share it again here: I’m looking for oxalate vitamin C stories to share with folks who don’t believe or are not aware that high dose vitamin C causes issues for those with dietary oxalate issues.

1) What symptoms do you experience?

2) How quickly do you notice symptoms after taking vitamin C?

3) What form of C have you tried? (ascorbic acid or Ester C or whole food sources of C like camu camu/amla/goji berry/acerola cherry/rosehips/kakadu plum/acai berry/ maqui berry or liposomal or something else). Please also share the brand and source of vitamin C if you know

4) How much vitamin C do you use and is this more than you usually take or are you/were you taking this for the first time?

5) How long did it take to get back to normal/no pain/no symptoms once you stopped taking vitamin C?

NOTE – ONLY VITAMIN C: for questions 2) through 5) – in order to be sure the new symptoms are due to vitamin C and not something else – the addition of vitamin C must be the only change made and then stopping vitamin C must also be the only change made. I have clients keep a log too and repeat the “test” if they are not sure. This can be likened to a gluten elimination trial but in reverse. Repeating the “test”also depends on the symptom severity.

6) Does/did anything help to counter the adverse effects (like calcium citrate, vitamin B6, NAC, MSM, biotin, bile support, Epsom salts baths or anything else)?

7) How long have oxalates been an issue for you and are you eating low oxalate? Or is this all new to you?

8) Would you equate the effects of vitamin C to eating high oxalate foods like spinach, raspberries, nuts and seeds, kiwi fruit, figs, turmeric, chocolate, wheat, white potato, soy, beets etc (less severe/same symptoms/more severe)?

I’m also adding these new questions based on some of the research I’ve been doing:

9) Are you aware of any kidney issues and if you get regular blood work done do you track and take note of your estimated Glomerular Filtration Rate (eGFR)?  What have you observed in terms of values? (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. It helps determine if you have any kidney damage.)  Have you ever been told you have kidney issues and have other kidney lab markers out of range?

10) What are your results on the Great Plains Lab organic acids test (OAT) for the following: Oxalic acid, Glycolic acid (glycolate), Glyceric acid (glycerate), Arabinose (a yeast/candida marker) Ascorbic acid (ascorbate, vitamin C), Pyridoxic acid (marker of vitamin B6 status), Furandicarboxylic acid and hydroxy-methylfuroic acid (markers for fungi such as Aspergillus), and markers of bacterial imbalance?

11) Do you have pyroluria (based on a urine test) or have more than 15 symptoms from the the pyroluria questionnaire and/or are susceptible to low vitamin B6 (poor dream recall and/or nightmares) and low zinc (and therefore high copper)?

12) How do you score on symptoms of low serotonin, low GABA, low endorphins and low catecholamines? (here is that questionnaire). Is your anxiety, low mood, cravings or sleep worse when you are dealing with your other oxalate symptoms/pain?

13) Do you have any genetic markers that indicate a susceptibility for oxalate issues?

14) Do you have celiac disease, gluten sensitivity, leaky gut, liver issues, gall stones, no gallbladder, poor bile production, fat malabsorption, mold toxicity issues, low pancreatic enzymes, candida, high iron/ferritin?

15) What are your results on a mold toxicity test such as the Great Plains MycoTOX profile? and/or do you live in a moldy home/worked in a moldy environment or have in the recent past?

16) What are you results on a stool test (and which stool test)?

17) Do you have high mercury, high lead or high levels of other metals?

18) What is your vitamin D level (now if you happen to know it and/or typical levels in the past) and did you start to take extra vitamin D during this pandemic too? If you are taking extra vitamin D how much extra? And does your vitamin D supplement also contain vitamin K1 and vitamin K2?

19) Do you have any other out-of-range (functional levels) markers on blood work or other lab tests?

I will come back and add references and the rationale for posing these questions.

Also, feel free to comment with a nickname to keep your health information private.

Josefin’s story: painful “fat tissue” around elbows, knees and hips, and an irritated bladder

I share some of the Facebook feedback below, but first, here are Josefin’s comments on my coronavirus blog. Josefin thanked me for not ignoring the oxalate problems that might come with higher doses of vitamin C, saying she has “experienced them first-hand and it is not something to take lightly.”

I asked her to share what happens when she eats medium and high oxalate foods (like spinach, nuts, kiwi fruit, chocolate etc). She shared this:

I gradually decreased my oxalate content in food as recommended in the TLO-group. During that year I experienced periods with a lot of the typical dumping-signs like sandy stools, pain in body and especially in joints and muscles, sand in eyes, bladder pain, peeing a lot, cravings for oxalate foods and a temporary relief in the dumping symptoms when I ate some higher oxalate foods.

I also realized that the painful “fat tissue” that I had all over the body (but mainly around elbows, knees and hips) for 10 years was really deposited oxalates with mostly fluid around it, since I lost it more and more while I dumped and had more pain there also when I dumped. Now the deposits are all gone.

I did want to know if the adverse symptoms she experienced with vitamin C were the same as when eating foods high in oxalates, and she confirmed they were:

Many of the symptoms of dumping were the same as I had previously experienced a few days to weeks after trying to do bowel flushes with vitamin C.

Josefin has been on a low oxalate diet for 3 years and has found the most vitamin C she can tolerate is 200-250mg of vitamin C per day. More about that in her own words:

Now after being on a low oxalate diet for 3 years (carnivore the last year) I have tried taking vitamin C very many times and come to the conclusion that about 200-250 mg per day is what I can take. If I take more I will get a gradual increase of that painful fat-tissue that will start after a few days to weeks depending on how much vitamin C I take. I will also get more of a flu feeling and irritated bladder.

When I stop taking the vitamin C I will within a day or two get all my typical dumping symptoms and they will continue for days to weeks depending on how much I have taken. Symptoms severity also depends on how much I have been taking.

It turns out she gets similar reactions with various forms of vitamin C: “ascorbic acid, calcium ascorbate, multimineral buffered ascorbate and also liposomal vitamin C from Quicksilver Scientific”.

Syd’s story: cystitis, along with a crashed brain

Syd shared this on the Facebook post:

I get symptoms from taking high dose Vitamin C within about 45 minutes. It shows up as cystitis, mostly, along with a crashed brain.

She did confirm that when taking vitamin C (possibly the ascorbic acid form) the symptoms mimic her symptoms when eating high oxalate foods. She also wants to try liposomal vitamin C and camu camu to figure out if she gets the same reactions:

I have the very same response to high oxalate foods. I used to think it was a bladder infection, but I tested four times and every time the test was negative. I’m having a response at the moment. I (stupidly) started eating protein bars that have nuts in them and after eating about four of them across several days, I have the cystitis symptoms.

I’m staring at some liposomal Vit C in the fridge that I’ve been wanting to try at a low dose. Same with some camu camu. I need the cystitis symptoms to abate first.

Virginia, Cathi and Melissa and their pain stories

Virginia also offered feedback on Facebook on her experiences with vitamin C, and again they are similar to when she eats high oxalate foods:

I took a pack of Vit C 1000mg (ascorbic acid) at night last week, next morning I noticed oxalate dumping. Took calcium citrate and it was gone within a day and yes the reaction is similar to eating high oxalate foods

On another Facebook thread my question got Cathi wondering if vitamin C was a factor in her worsening arthritis:

Hmmmmmm this has me thinking. I started Vitamin C crystals 1000mg a day – small spoonful in water. It is sour and not awful. Then, a couple of months ago the arthritis deposits in my right hand fingers got much worse and my right wrist has given me so much grief I have had to reduce my yoga. And I got a weird cyst or something on the inside of my right wrist. I wonder…. Gonna stop it and see if it makes a difference!!! Thank you as I was totally stumped and I hope this is the answer!!!!

On this same thread, Melissa shared that noticed severe joint and muscle pain within 2 or 3 days of starting vitamin C:

When the COVID stuff started, I started taking vitamin C as a preventative measure to keep my immune system strong. Within two or three days, I had system joint and muscle pain everywhere. I could hardly move! I stopped the vitamin C and it cleared up in 3 or 4 days. I’ve never had kidney stones, but my brother has, so maybe it’s a genetic predisposition? I do have a history of on & off systemic joint pain since my early 20’s.

I never thought I had oxalate issues but now I’m wondering if it might be related to my random systemic joint pain. 

I was taking between 1,000 to 3,000 mg per day. The label says Solaray timed release vitamin c (ascorbic acid), acerola cherry and rose hips.

Thanks to these folks, everyone who has already contributed on other blogs, all the Facebook feedback (and to you if you provide feedback today).

My hesitation – I don’t have all the answers and we are in the midst of a pandemic where vitamin C is so important

I planned to include this in part 2 but I’m adding this section now because a few hours after publication there are already so many comments and questions. I did hesitate about publishing this blog when I don’t have all the answers and because we’re in the midst of a pandemic where vitamin C has been shown to be very important.

There is plenty of research on the benefits of vitamin C and it’s widely used with much success during serious illness and for sepsis. This paper, An Update on Current Therapeutic Drugs Treating COVID-19, published just last month, discusses vitamin C (ascorbic acid) as a supporting agent, playing a role as a potent antioxidant, with benefits for immune health and as an antiviral against flu viruses.

It also discusses an IV vitamin C coronavirus trial and high dosages currently being used in various hospitals for this virus. The authors do also say “no major side effects” which is what we are typically told about vitamin C.

The Orthomolecular Medicine News Service have issued a number of valuable press releases on vitamin C specific to coronavirus but they are steadfast in their conviction that there are no issues with vitamin C, saying it doesn’t cause kidney stones.

For the majority (I think) there will be no major side-effects but for those with oxalate issues high doses of vitamin C are clearly problematic.

One caveat is that there may be a place for short-term high-dose use during a healing crisis, even for someone with dietary oxalate issues. Unfortunately I don’t have an answer for this aspect yet and I’m hoping a vitamin C expert will contribute to the discussion or I’ll discover some research about this.

And let’s not forget this study published in 1994, The clinical effects of vitamin C supplementation in elderly hospitalised patients with acute respiratory infections, where 200mg of supplemental vitamin C per day resulted in an 80% decrease in deaths among severely ill, hospitalized respiratory disease patients.

This topic is near and dear to my heart and folks have oxalate issues now so I decided to go ahead and publish this information. I’m looking for a solution for my community who are already aware they have oxalate issues (many of you have already reached out to me so thank you) and for myself too. I’ll share details of my oxalate story (my pain is in my feet and my eyes) and my vitamin C experiment in a future blog (I used food based vitamin C and 100-200mg/day and it didn’t go well).

As I mentioned above, I’m also concerned there are many people who don’t know they have oxalate issues and may end up with issues because of all the well-meaning vitamin C advice that is being shared during this pandemic.

I may have bitten off more than I can handle with this topic – I’m learning voraciously and it’s like drinking from a fire-hose! But I’m doing what I often do … I learn by teaching and asking for your feedback and questions, and I’m open about the fact that I’m not an expert and don’t have all the answers.

**** Some cautions *****
Please discuss your situation with your doctor and other health practitioners before stopping or reducing vitamin C based on what you’re reading here.

If you are completely new to the topic of oxalates, this is sound advice from Susan Owens on getting started: “work your way gradually into a completely low oxalate diet.” You can learn more on getting started here. Susan runs the Trying Low Oxalate Group (TLO) on facebook and they are extremely helpful.  I will be sharing additional resources/studies/practitioner feedback etc. but this will get you started.

A reminder that pain can have many root causes other than dietary oxalate issues (or in addition to oxalate issues): gluten issues, nightshades, low GABA, low serotonin, low endorphins, Lyme disease (bartonella can cause foot pain), fibromyalgia, low B12, heavy metals, mold toxicity, autoimmune conditions etc.

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Feel free to comment below – share your feedback and ask your questions. And do let me know if you’re interested in learning more about this topic and additional blog posts.

If you’re a practitioner who works with individuals with dietary oxalate issues I’d love to hear from you too.