Welcome to a very complex tale of connecting dots between life long symptoms and a current state of severe food intolerances and vitamin deficiencies. Outside of the food safety zone, my symptoms become so severe that I cannot function. Within, there are some symptoms but very tight regimes of high maintenance food prep, supplements and lifestyle strategies keep life manageable, gratefully, without medications.
I learned how to keep these symptoms under control through health groups on Facebook, not a place one would expect to find health answers, but when doctors fail, patients like me are left with little recourse. We either remain ill or we figure it out ourselves. It seems there are many of us in the same situation, saddled with complex conditions for which doctors have little input. Modern medicine seems to have little to offer in disordered energy metabolism (affecting every system), ailing mitochondria, and vitamin deficiencies. My doctor trained in GI disorders missed the fact that my gut was causing migraines for the same reason my neurologist did, compartmentalization. Neither considered mitochondrial dysfunction. Neither considered thiamine or other nutrient deficiencies. I had to figure that out myself.
Early Childhood Memories: Longstanding Symptoms
As a little girl there was no need for me to speak because I got everything I needed through my sister. This resulted in a spell at Easter Seals, an institution for those on the autism spectrum. When I hear of delayed speech in children today I think, “Oh, the Feingold website and diet”. Delayed speech, hyperactivity, red ears or flushing—a low salicylate diet can help. I wish my mom had known about the Feingold organization, but they didn’t yet exist.
During gym class, my teacher running cold water over my wrists in the bathroom to try to turn the color of my face back to a lesser shade of crimson. An EKG revealed nothing and I was told to drink more fluids.
There was also walking and talking during sleep and then the dreaded sleep paralysis. I had a fabled allergy to a chocolate Easter basket. Then dyslexia showed up when I first tried to draw my letters.
In school, I struggled to hide my loud stomach gurgles and painful hiccups. Semi regular digestion disasters ruined some special occasions, but all was still under the radar. Painful calf muscle cramps were in the middle of the night, so no one knew and they wouldn’t have been recognized as a mineral deficiency anyway. As an adult my calf muscles were extremely tender to the touch, which, I now know, points to thiamine deficiency.
The most obvious harbinger of future troubles was motion sickness. Struggling to not barf in the back seat of our station wagon. Should I look at my coloring book, at the road, at my legs? Those symptoms haven’t changed in 40 years, I noted on a recent windy drive up to Kings Canyon. That same reaction, tunnel vision, dizziness, and nausea, has been triggered for me on perfectly level ground. It comes from chemicals called amines found in common foods such like bananas.
Persistent and Increasingly Complex Symptoms in Adulthood
Alcohol Intolerance and Arrythmia
I often witnessed my intolerance to alcohol, but didn’t think of it as a symptom. That facial flushing happened multiple times every day and it was impossible to pinpoint all the triggers until I learned about histamines. It didn’t actually hurt, but left me exhausted, because along with it came “The Throb”. This is a feeling of my heartbeat all over the upper half of my body, but different and with a broader reach than my usual variety of heart arrhythmias. I remember a physical therapist refused to work on me until I saw a doctor because my carotid artery was pulsing so visibly that it scared her. The ultrasound came back normal. I still have the throb intermittently everyday and now I understand it, like disordered sleep, to be a symptom of dysautonomia, another sign of thiamine deficiency.
Post Food Coma
I used to fall asleep while driving, always post-snack. I fell asleep while talking to my fiancé’s parents—after a meal of pizza. If I were to eat dairy right now, I would be asleep within 30-40 minutes. Unlike a nap, it feels like I have been drugged. Richard Deth is the doctor whose studies showed why casein and grain-free diets work for the autistic population, and thus, many in the chemically sensitive population as well. It has something to do with peptides crossing the gut barrier (leaky gut) and hitting opioid receptors. I trusted that his research spoke to my symptoms when a Google of opioids showed somnolence and constipation are the first two symptoms. There are other competing theories, though. That thiamine deficiency has created a state of hypersolomnence well described in this article due to pure lack of ATP. It has also been suggested that I’m so low in B2 and B12 that I can’t make melatonin, so one hit of dairy is a shock and the newly created melatonin suddenly makes me sleep. I’m not sure how that could tie into the constipation, though. Yet another connection to my known low folate status is that cow’s milk down regulates folate receptor autoantibodies (FRAs), so going dairy free is very important. It may be that all of these items contribute. Whatever, the cause however, falling into a dead sleep upon eating is not healthy and something I had to figure out.
From High Grain Pescetarian to Low Carbs and High Fat
In an effort to overcome some of my symptoms, in 2010 I went from a high grain, mostly vegetarian diet, to a more primal or Paleo diet. With this diet change, I thought I was finally on the right path to health because so many of my symptoms suddenly disappeared. The one I was happiest to leave behind was a painful condition called Interstitial Cystitis (IC). My skin was perfectly clear for the first time in adulthood. I was less anxious, with no panic attacks or depression like before. I felt full all the time and lost weight easily. I attribute those positive changes to removing grains (for my SLC19A1 glitch), processed foods (my latent salicylate sensitivity) and some improvement in B12 levels (depression) due to the addition of red meat.
Unfortunately, some darker changes were happening that took me years to connect to this diet. Terrible neck and shoulder pain and new insomnia with an “electric vibration” lead me to a diagnosis of spinal stenosis. PMS symptoms and migraines were suddenly more frequent and worse. It took me years to figure this out, but what I finally determined was that I was making and storing a lot of oxalates, the mineralized crystals best known for kidney stones.
This all makes sense to me now in terms of oxalates. Susan Owens, from the Trying Low Oxalates (TLO) group often talks about how IC can be the oxalates “speaking to us” and although painful, it is better that they are moving out rather than moving into cells or into bones for storage. I believe that my body switched from “excrete mode” for oxalates and into “storage mode” due to something about my diet change. It could be that the higher fat content created oxidative stress which started or increased the endogenous production of oxalates that I tested positively for years later. I never would have guessed my bone spur was from nutrition or disordered metabolism. My doctor and I had blamed some unremembered injury from yoga practice. I have a PubMed case study of spinal stenosis with photographs inside the bone spur showing millions of oxalate crystals. When I dump oxalates, and when I am not doing well in general, I have right side nerve pain (the side of the stenosis) that could additionally be demyelination from low B12. I’ve found topical magnesium is magical for this, thanks to the TLO group.
The increase in PMS symptoms was also oxalate related. I had always come down with IC right before my period and it makes sense that the body would take advantage of the cyclic aspect of menstruation to ditch oxalates and many other TLO group members confirmed this experience. I recognized all my PMS symptoms in a TLO file about the variety of ways our bodies “dump” oxalates.
2012 1st Health Crisis: SIBO, Migraines, and More
After 6 years of eating “Primal”, I moved out of state and had a disabling increase in migraines, insomnia, flushing, dizziness, light sensitivity, fatigue, and heart palpitations. Doctors and normal test results were not helpful. I ended up on low dose Amitriptyline (a strong antihistamine), which put my sleep back in order and allowed me to work again. The worst of the problem was solved until I learned that anticholinergic has the word choline in it, so this drug is terrible for the mitochondria. This 3 year long mistake is so typical of what can happen when laypeople have to take charge of their own health.
Another diet-induced problem: After years of eating like this, I was only able to go to the bathroom once every 5 days, with tears in my eyes. I saw myself in a description of SIBO—Small Intestinal Bowel Overgrowth. A GI doctor agreed and I tested positive. I found thousands of people on SIBO Facebook groups not getting better with antibiotics, so I waived off his recommendations. Reintroduction of potatoes and supplementing with resistant starch corrected the problem—thanks, Internet. If only I had read Paul Jaminet’s warning about low carb diets years earlier. Later, I noted that my GI doctor’s recommendation of Miralax for constipation would have made me so much worse, as it contains polyethylene glycol, a derivative of ethylene glycol, the main ingredient in antifreeze, and a quick way to fill your body with oxalates.
At this time though, I had no idea what histamine, oxalates or salicylates were. I had tried a food journal for migraines, but my neurologist told me to only watch for cheese and wine. Well, there are a whole lot more foods than that in a histamine foods list, not to mention other chemical categories. Foiling my journal attempts was also the bucket theory. Once emptied, by a migraine for example, I was able to consume high histamine foods without any problem. It is the build up over time that leads to the bucket “spill over”. Hence, my pattern of fine health and digestion at wedding rehearsals, but then sick at the actual wedding the next day—my bucket had filled.
I was eating very “clean” and I thought healthfully. I enjoyed avocado, cactus paddles, eggs, onions, bell peppers spinach, sausage etc. for breakfast. Assorted root vegetables roasted in duck fat. 2 iced coffees per day. Snacks of Greek yogurt with fresh berries and local dates. Sweet potato roasted in orange peels, braised meats, dark chocolate and nuts. Ninety percent of my food was homemade. I always had frozen homemade soups and chili on hand plus I dabbled in fancier recipes from magazines. Although I had cut out grains and processed foods, the variety I was eating and my cooking skills were growing every year. In the next three months, my out of control reactions would cause me to take a quick but deep slide down the elimination diet rabbit hole, and land with only 12-15 safe foods.
The 2015 Crash: Salicylate Sensitivity, Tinnitus and Migraine
With the notion that my migraines, flushing and stomach gurgles were tied to the SIBO, and that natural antimicrobials were safer than antibiotics, I embarked on a high dose oil of oregano (a high salicylate) treatment to kill the SIBO with a Registered Dietitian. I can’t blame her, as neither of us knew that my previous occasional ear ringing and swollen eyelids were signs of latent salicylate sensitivity, nor that it was common in those with early speech delay. I had a terrible time on the oil of oregano, but stuck with it through the abnormally long protocol, because I was told to expect symptoms of “die off”. That period was like one long migraine with breaks only for prodromes, in which tiny flashing lights in my peripheral vision combined with distinct feelings of disassociation. I was poisoning myself, taking in chemicals that my body could not detoxify quickly enough. During the last week of treatment, I connected one stomach reaction to a high histamine meal and read everything I could about Histamine Intolerance. Immediately I stopped eating all high histamine foods and began to take supplements known to help—vitamin C and quercetin. I stopped the Amitriptyline once I read that it suppressed DAO production, an enzyme that degrades histamines. I continued to eat dates and raw honey until I tied the honey to another massive migraine (salicylates). A dear stranger on the Histamine Group pointed out to me that tinnitus is usually a salicylate symptom and not a histamine symptom.
I joined the salicylate group and started lowering salicylates in my diet. It seemed impossible to tell what I was reacting to. I stopped all supplements, I quit all caffeine and started eating from the “Fail Safe” diet lists. I changed all personal care products to salicylate-free. This started to calm my system down. The thing they don’t seem to know or mention at the Failsafe is that when you start dropping foods and you don’t know that you have an oxalate issue then you can accidentally trigger an oxalate dump, which can be very dangerous.
Now the high dose vitamin C was kicking in and creating more oxalate problems, as it can convert to oxalates in the body within two weeks. My body was out of control. Ears were ringing off the hook. The “throb” and abnormal heart palpitations were magnified 10 fold. I was in a 2nd full blown health crisis, unable to work. Sleep, migraines, palpitations, tinnitus became unbearable. The ear pressure felt like my ears were blocked. After a 6 year hiatus, my painful IC was back every evening.
The quercetin, a methyl donor, had been building up as well. The worst night I woke every 40 minutes or so throughout the night from night-terror-dreams with my heart pounding so strongly that it made me feel nauseous. I had one strange day where my throat tightened up, but a cold never developed. I dropped and broke three plates and two drinking glasses in 3 days. I experienced high anxiety and could not drive on a freeway. I had to go through this type of experience two more times before I learned that it was due to methyl donors. The last time it happened, I burst a blood vessel in my eye. A hard-won PSA: you can potentially stop a methylation crisis with Niacin.
On April 30th, I saw an ear/hearing/allergy specialist who said my hearing was still good, and to see my neurologist about the tinnitus. I did two things that turned the sinking ship around that day. I ate a meal of all high ox foods, which stopped my giant ox dump. The nightly interstitial cystitis symptoms disappeared. Second, I restarted the Amitriptyline and finally began to stabilize and sleep through the night.
Post Health Crisis
This is what I have learned so far:
- If I eat or touch high salicylate plants, my ears get short bursts of ringing plus a different type of tinnitus at night—pulsatile, so that I cannot keep my head on the pillow. I also get swollen eyelids with dark circles underneath. It can quickly turn into styes and blepharitis. Before I learned how to control it with diet, I got peeling lips, watery, itching and red eyes, excessive thirst, and feelings of dissociation before migraines. Also, insomnia and inner ear drainage feelings.
- If I eat high histamine foods I get migraines as well as stomach bloating and loud gurgles followed by hiccups, light sensitivity, heart palpitations, stuffy nose during and after eating, and dizziness upon bending over. From some chemical smells I get a spot on the back of my neck that will start itching like crazy. The same spot I scratched as a child. I found my chronic low blood pressure to be associated with migraines as well.
- If I eat high oxalate foods I get a return of the interstitial cystitis and dramatic muscle cramps.
- If I eat dairy I either fall asleep or suffer severe brain fog within 40 minutes, plus constipation the next day. If I eat it consistently, the interstitial cystitis returns, I think due to fat malabsorption.
- If I eat white rice or raw fish, I get sciatica pain at night, due to the drop in thiamine. (Interesting that German doctors systematically prescribe thiamine for sciatica pain)
- If I eat fruit or any simple sugars, I get bloating and stomach gurgles. This could be a result from the simple sugars “popping” thiamine out of cells.
“The Killer Strategy” and Another PSA
I returned to my GI doctor for help, thinking that SIBO was the root of all my food intolerances. Begrudgingly, I took his antibiotic, the standard for SIBO treatment. My last appointment with him was the day he recommended a second round of Rifaximin after the first had left my test numbers 4 times worse.
The risk with antibiotics is that each time a round is taken, good bacteria that help produce thiamine and other vitamins, get wiped out with the “bad”. What if in SIBO, the bacteria are moving from the large intestines into the small to help us? Maybe they are sent to help digest our foods because our vitamin levels are not sufficient enough? Susan Owens regularly cautions our group,
“Please remember that these microbes compete for turf and form alliances. Antimicrobials do not understand or honor those distinctions and right now we are at a place of profound ignorance.”
We do know for a fact that certain antibiotics will wipeout a specific bacteria that helps us degrade oxalates. From the TLO group, here is the list of antibiotics to avoid if you want to keep your Oxabolactor Formigese bacteria alive and degrading oxalates for you:
azithromycin, ciprofloxacin, clarithromycin, clindamycin, doxycycline, gentamicin, levofloxacin, metronidazole, tetracycline and nitrofurantoin.
Most of these are quite common. I’ve taken multiple rounds of at least four of them.
A Different Framework for Treating Complex Illness
After the failed Rifaximin treatment, I thought that if I could stop the endogenous production of oxalates, (for which I had tested positively), then I could get salicylates back. Since both ride the transsulfuration pathway, it seemed logical that oxalates, a toxin, could bump salicylates off that pathway and leave my body with a salicylate overload. Oxalates also trigger the inflammasome, which could explain my histamine symptoms. So enthusiastically, I embarked on a B-vitamin supplement protocol prescribed by an experienced practitioner based on my OAT test results. At the end of that long, bumpy and educational journey, I was still only stable enough to work, and having to walk the tightrope of restrictions plus ongoing symptoms that never resolved.
Still Searching…
Dr. Derrick Lonsdale’s work on Thiamine Deficiency (TD) had always been a part of the conversations at TLO because deficiencies in B6 and/or thiamine will cause the body to produce oxalates. That is definitely one piece of my puzzle. My many out of range plasma amino acid markers attest to this, plus OAT test results. Another piece, the genetics angle, made sense to pursue since I had experienced many of my symptoms intermittently since childhood.
I met with genetics counselor John Cantanzaro. He told me to never eat grains because I was homozygous for SLC19A1. The meaning of this genetic glitch is that I am deficient in folate (vitamin B9) and thiamine (B1) due to a transporter defect. I have so very many symptoms attributable to thiamine deficiency that I am not deterred by lack of testing. As close readers of this publication know, there is no accurate way to test for thiamine in the US because the all labs have stopped offering the transketolase test. (As of this writing, it is available in Barcelona, but good luck finding someone to interpret, I am told.)
A potential second genetic puzzle piece has also been found. The brilliant scientist and researcher Susan Owens, owner of the TLO group, has pointed out that four other SNP’s in the SLC family could also create thiamine transport issues plus many other problems pertinent to my situation. SLC’s 22A1, 22A2, and 22A3 move around neurotransmitters like serotonin and dopamine, choline and acetylcholine. Perhaps that is why I have only been asleep between 3 and 6 am a handful of times in the last few years. They also are important in immune function, regulating T cells and B cells. Perhaps that is why I have fluctuating but distinct symptoms of Babesia (faux bruising, sweating, angiomas). These transporters are related to salt intake and regulation, possibly explaining my life long salt cravings, need to pee and drink water with abnormally frequency. What really got my attention was that these transporters also move salicylate and are related to how histamine and stomach acid are handled.
It seems there is currently no test for these transporters. There is also no other competing hypothesis for why anyone would have all three chemical issues—histamine, salicylate and oxalates. There is no currently practicing M.D. who can help with this, but there are plenty of us on the FB groups who have all three. It can be very disturbing for me to witness people constantly entering the groups, with signs that they have no idea what is in store for them. Some fare better than I did, finding stability after only eliminating that one category. For most of us though, it becomes a frenzied learning journey, trying to read fast enough to keep up with our changing symptoms and to not make things worse accidentally by doing the wrong thing. There are some who end up in the hospital with anaphylaxis. Others from dumping oxalates too fast–which is potentially fatal and the hospital staff would never able to recognize what was happening. I am still not sure what type of medical ID tag I need to warn my future caretakers in case of an emergency: “No vitamin C, no salicylic acids, no benzos, no Tylenol, no “biologicals” (vaccines), etc, etc.”.
How To Fix SLC19A1, the Broken Transporter?
Lately, I have started spacing my thiamine supplements further apart, thinking that if the transport is limited then I need to load the bus more frequently with smaller amounts. I also space my B6 apart from thiamine in case one inhibits the other. I recently trialed choline and finally found a crack in the relentless insomnia. Sadly, it led to some over-methylation symptoms. For thiamine support, I eat no simple sugars, including fruit, and no diuretics or processed foods. I even gave up lentil pasta for fear thiamine would get lost in the cooking water. Additionally, bicarbonate, rutin, no D-ribose are avoided. Do I need manganese? I don’t know how to overcome the transport problems and get the vitamins into my cells. I found a mitochondrial doctor, but he charges $800 for a 1 hour visit and does not accept insurance. A local naturopath is willing to give me IV, but that seems like too much at once for the transport theory. He said an injection into muscle would last longer than IV, but are there any examples of success with this theory? I am also currently pursuing the genetics angle with a Whole Exome test whose price has recently come down from outer space.
More Dietary Approaches
In 2016, I decided to try eating the opposite of what I had been eating, so in addition to my food restrictions, I went high carb, low fat vegan. Again, there were good and bad changes. My triglycerides fell from over 300, out of range high to out of range low (indicative of thiamine deficiency). They rebounded to within normal range when I reintroduced lean meat. The keratosis pilaris on my upper thighs disappeared. But I lost too much weight, which also corrected with a reintroduction of lean pork and eggs. I tried to reintroduce low oxalate grains in June and that resulted in a week and a half of drenching sweats every 20-40 minutes both day and night as well as losing my period.
Lately, I’ve been encouraged to take a hard look at B2, B12 and iron. Test markers show them all low in spite of high supplementation and my brief stint at veganism surely did not help. A ferritin of 20, within range on my Quest report, is actually very deficient and 70 is my new target level. To raise B2, I need selenium, iodine, molybdenum and iron. For all of this, I am to dramatically increase fish and liver in my diet, plus add more molybdenum, Brazil nuts (carefully, as high oxalate) and slowly titrate in methyl B12 topical oil, then retest plasma and OAT in two months.
The roots for this plan are found in two excellent websites. This one on B12 and another here on dementia. Here my known deficiencies in iron, B2, thiamine, B12 and folate, my sensitivity to methyl donors, my out of range low 3-mehtylhistadine (muscle wasting) and my high markers for succinic acid and citric acid (wasted energy) are all described as precursors to dementia.
Have you seen the movie “The Dallas Buyers Club”? Matthew McConaughey’s character seems entirely relatable to me in his need to operate so far outside of the traditional medical system to find help. Not one of my traditional doctors, requested the tests above. I had a doctor tell me my sleep issues were from never adjusting to the time difference from Chicago to LA. I had an eye doctor tell me that there were no dietary interventions for chronic blepharitis, although it is a symptom of both salicylate sensitivity and thiamine deficiency. Before I tested positive (3 times) my main doctor told me SIBO only happened to people who had stomach surgery. I’ll stop there.
This tale ends with deepest gratitude to my “team” for sharing the maps above and how my symptoms and markers could connect to it. These people have never met each other, nor me in person. Amazingly, most have been free of charge, but required an enormous amount of time, digging and learning to find.
Susan Owens and the moderators at TLO; Chandler Marrs, who connects so many of us to Dr. Lonsdale’s work through this brilliant publication and her work on FaceBook groups; the many strangers and friends on FB who have responded to my questions and shared their insights at crucial times along the way; Tim Steele; John Cantanzaro; Donna Johnson; Dawn Tasher; local naturopath Dr. Simon Barker, the Salicylate Sensitivity FB group, wonderful websites like the Healing Histamine and the many brilliant patient/researchers at Phoenix Rising. Thank you!
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This article was published originally on October 11, 2017.
Wondering if you’ve studied the Root Cause Protocol by Morley Robbins. By slowly following their list of stops and starts, their premise is to correct mineral imbalances and restore health. Their facebook page is called The Magnesium Advocacy Group studying the Root Cause Protocol. Many people have cured their histamine and oxalate problems, among many other things. There is alot of information to digest but it seems legit.
Hey I have a lot of your same issues. What’s happening I believe is simple. You have been poisoned, likely repeatedly, probably from an early age. Likely by heavy metals and a host of other things (vaccines, bad water, food additives, pesticides etc). When the body is poisoned you all of a sudden can’t process basic things like foods your grandparents could eat. You have all these intolerances and sensitivities and likely allergies. Your body can’t handle basic things because it’s contending with poison. You need to detox this, likely with enemas and anything you can do. Maybe go on a hardcore elimination diet as you do so – like carnivore – so that you don’t put more stress on the body. My symptoms have flared up the more they streak the sky with chemtrails. So heavy metal poisoning is continuing. You will want test your water for heavy metals. If you don’t get the poison out and minimize the new poison coming in you will likely get cancer. Cancer is just an amalgamation of massive unreleased poison. A friend of mine cured her cancer with hardcore detox with coffee enemas but it took years. I am now doing the same. The only time I have found relief from my issues is when I have removed things that were toxic (didn’t know they were toxic – like fish oil – stay far far away from that) and also doing these aforesaid detoxes. That’s it. You are poisoned. And if you’re a vaccine enthusiast you’d better wake up and stop or there will be no helping you. I’m so sorry my friend. Pray ?
Hello! Can you tell me in which laboratory in Barcelona the transketolase activity test is done? Thank you.
I had all those symptoms. Couldn’t eat anything without reacting. I healed it all with Chlorine Dioxide. Turns out, it really was all infections and a massive toxic burden in my colon.
How long did it take to heal?
Hey Elenie. Thank you for sharing your story. So much suffering and such a big health quest.
As a naturopathic practitioner who specializes in complex conditions , to me it seems like you are still missing a root cause of your health issues.
You may have correctly identified a pices of puzzles in your chronic health issues- i.e salicylates, oxalates etc, but this may be as a consequence of the bigger problem. The bigger problem is usually an infection or toxicity form environmental exposure.
I would investigate Lyme disease and coinfections or mold exposure. Feel free to message me directly .
Unlikely!
Before that, I would look at your genetics. I have been dealing with this for 35 years and have done everything possible to try and get well from Lyme, Mold, Babesia, viruses, etc. Bottom line the poor genetics along with toxins and stress we cannot fight the bugs well.
Eat fermented foods!
Hello. You miss Deuterium factor.
You drink a lot and build it up in mitochondria.
Try a fast with nearly no drinking and see result.
Bad sleep blocks melatonin production what blocks freeing mitochondria from deuterium. Oxalates as carbs(uric acid) cause inflammation and lower glutathione, spiking inflammation & oxidation of normally healthy fats.
Deuterium is stored in plants too: in it’s starch, sugars.
Do you also avoid fats to not inhibit calcium binding oxalates? This deprives of last safe source of deuterium free water for mitochondria.
All this keeps mitochondria compromised, >>activating reverse Krebs cycle<< forcing various pathways with normally unnecessary chemical processes.
Did you try anything from Huberman's episodes on sleep?
You also probably didn't try a real carnivore diet.
Ask Harry Serpanos about your case. I'm unqualified to explain properly, so just hinting a possible cause.
Good luck.
Dear Elaine ,did you check to see if you have mercury toxicity ? When have mercury your minerals and vitamins are out of order. Look for Andy Cutler group on FB. Usual this people from heavy metals group have a list of foods to avoid and some supplements list.In fact everything that contain sulfur need to avoid.You may have heavy metals .In general people with oxalate issues or kidney stones have mercury in their body.I used chellation for 4 years ,feel much better ,I did not finish chellation but also have oxalate issue.
This statement seems incorrect:
The 3-methylhistidine would be elevated not low when there is muscle wasting.
I wonder if she meant HIGH 3-methylhistidine?
Look into mold. It can cause all of this…..
Most GI infections come from poor bile flow/high sugar/carbs. Liver/gallbladder flushes work great.
GI infections can create a loop of high oxalates, toxins and high ferritin which further feeds the GI infections, leaky gut syndrome and liver toxicity which creates poor bile flow. It all loops together. I went through this. I found OAT to be a valuable test along with full 20k gene testing. Giving blood, PC complex, bitters tincture, HCL, enzymes, ox bile and mega dosing liposomal colostrum turned by 17 years of extremely poor health around in a matter of a few months. It was still a long road of 1.5 years to full recovery though.
I second this post! There is a strong connection between SIBO, Leaky gut and all of these intolerances. Unfortunately it is a vicious cycle and one thing can set off one part while trying to heal one aspect and vise versa. What a lot of people do not realize is that they are low in stomach acid. A big portion of the population is low in stomach acid and continue being treated as though they have too much. HCL has been a HUGE game changer for me. Not only does it kill certain bacteria in the gut, but it also promotes digestive motility which is a huge part of working through both SIBO and leaky gut. At the core of all intolerances is leaky gut. When you do not have a tight junction, all of these particles get through and cause a wide range of issues. Many people have leaky gut because we were treated with antibiotics so often by western medicine because we were taught to put so much trust in them. Bile flow, Stomach acid, Dao enzymes, Digestive enzymes, are all needed to get the body back in order. It really does take some time, just like it took a long time to end up with these problems. I personally have to take over 4,000mg of HCL at this point because of how insufficient I was. My digestion changed immediately upon taking it. I am still reacting to histamines and salicylates because I am at the beginning of it all and barely starting to incorporate DAO into my regimen, but it is all part of the process. We heal a little, then have to figure out the next piece. I literally eat meat and gluten free bread to keep from having emotional mood swings and hives, however slowly but surely I am starting to reintroduce things. Motility is key. We have to keep things moving through our system in order for it to heal.
Hey Linn,
Just wondering where you stand as of today.
Have you fully recovered? Any new insight to add to this post?
Thanks.
Why do you mention giving blood as an aspect?
It lowers iron
Hi, you can take IP6 to lower iron.
Hey Joe,
Just wondering where you stand as of today. May I ask what symptoms you experienced before you began this treatment protocol?
Have you fully recovered? Any new insight to add to this post?
Thanks.
Hello Elaine!
Your story is very relatable. I’m curious if it would be possible to talk with you regarding how you navigated finding the right tests and people to analyze it.
Having spent 10 years trying to solve my issues, and landing on celiac disease, dysbiosis, salicylate / oxalate / histamine issues. It’s been rough finding anyone to work with as I have no money, can’t hold a job and the supplements which do help only works sometimes. CBD helped, but has high oxalates so they ended up causing issues over time.
Sincerely,
Jamie
It is a never ending battle to feel good, I can relate to your story, have been adjusting and readjusting diet, supplements for decades. Abandoned the conventional medical system years ago even though worked in it for almost 40 years. It is fragmented and limited to a pill for every ill, surgery or it must be in your head. We are called “overthinkers”. Every so often I get a day almost pain free and feeling great, more often I am trying to figure out what I did wrong to cause the way I am feeling. Find the knowledge of alternative providers to be lacking in how genetics play in all of this. We are mostly on our own,
Your story has resonated so much with me and is very similar to my own and my daughter. I also had post food coma, but my dive down the rabbit hole came when I couldnt even get my shoes on anymore from “gout” and my finger was so painful. I have never been a heavy meat eater so I knew there was more. I know this is years late, but I believe I may have found a link.
High nitric oxide production and nitrosAMINES (bacon, hot dogs, lunch meat) have been linked to anxiety, depression, bipolar disorder, arthritis, vertigo and chronic liver disease.
Chronic liver disease can cause dark circles under eyes.
Arginine converts to nitric oxide and can cause cold sores (which we have) if theres a lysine deficiency. Lysine deficiency affects fat metabolism, loss of calcium, niacin deficiency, and cold extremities. I believe we are also insulin resistant.
Ways to lower nitric oxide (potentially?): vitamin d, niacinamide, progesterone, caffeine, thiamine, lysine, magnesium.
I’m still finding my way in the dark, but all my allergies and symptoms (mirroring yours) seem to point to this.
Through my journey, lysine and high dose vitamin C were the two noticeable things that “made the lights come on”
I have to take allithiamine at night because ive developed a silicone dioxide allergy.
Nitric Oxide is not a problem, the same way animal fats are not any problem. It’s what you do to inflame mitochondria & oxidise healthy fat reversing normal energy production cycles. Deuterium in excess water intake and plant food with lots of sugar where it’s stored, carbs especially fructose because of inflamative uric acid creation, salt, glutamine, processed plant oils, low omega3. Like what else causes insulin resistance?
If your diet doesn’t reverse anything for real after 3 months something’s wrong with it.
Lowering NO is a really bad idea. Like lowering cholesterol not fixing real causes.
Mixed diet with carbs & fat together is already a big mistake most people do. Elimination is the first approach usually starting fresh with meat only.
Thank you so much for sharing your information! I saw so many dots connected that I was wondering about on the long journey for answers of my own. I was curious as to why I get cystic skin lesions when I get extremely low in B and wondered if it tied into oxalates. I can be rid of acne, planters warts, mouth sores, and nail issues that stick with me for ages in weeks of B therapy….as well as extreme anxiety, comatose, and nightmares. I find so many maladies overlap, I’ve even seen different disease or syndrome names for the exact same physiological response. But something I’m really beginning to see acknowledged and immerging is the connection of multisystem diseases linked together. This is extremely common with EDS, MCAS, and POTS. So much of what you are explaining mirrors symptoms of at least MCAS, which is why low histamine foods would help. L-Histadine helps lower histamines in the blood as does a good liquid C, B deficiency happens often in MCAS as it can really plummet when the anemia hits. That causes a domino effect in which blood pressure drops from overly lax vessels and joints, upon position movement. The offset causes nausea, mast cell reactions to so many foods and allergens…even things you aren’t normally allergic to. I thought I’d send you down the rabbit hole as it may give you some answers. Mast cell stabilizers and collagen are a good start, I have found so many supplemental cure-alls along the way. I can’t wait to try some of these diet options you’ve uncovered. Thank you!
I wonder then if the writer of this article and yourself are hyper jointed with stretchy skin in places as well. Ehler Danlos is a collagen disorder which covers all of the above symptoms mentioned including an overlay with Autistic Spectrum disorder and ADHD according to recent research.
I have been studying Ehlers Danlos and lipedema as it relates to thiamine as well. Here is a good article from Dr. Lonsdale:
https://hormonesmatter.com/thiamine-deficiency-aberrant-fat/
Hi Elaine,
Thanks for sharing your story. I noticed you said tinnitus stems more from salicylates than histamines. What are some common foods high in salicylates that I should avoid?
Thank you,
Steph
Hi Elaine,
Thank you for writing about your journey in figuring so many things out. I too have very high sensitivity to Oxalates and was startled when I read that there may be a probiotic, Oxalobacter Formigenes, that can digest them. I did a search on the internet and didn’t see any way to buy this probiotic. Can you point me in the right direction for how to attain it?
Many thanks,
Matt
Wow, Elaine. That’s quite a journey.
Have you been assessed for Ehlers Danlos Syndrome and heavy metal toxicity yet? Have you gone down the Lyme and coinfections rabbit hole yet?
Catriona
Hi Elaine, I found this article very interesting as I myself suffer from a lot of the symptoms you described and have a hard time finding any foods to eat that don’t cause bloating or extreme fatigue. I know you shared some diet strategies that you had but would love to hear if you have made any improvements since writing the article and if so, what diet has worked for you. Thank you SO much for putting out this information.
Hi Kelly
That’s interesting …I didn’t know glycine was the main way to detoxify salicylates. A few years ago I took a marine collagen supp for 18 months and was then able to tolerate a lot more sals… I assumed at the time that I had healed a leaky gut. On the flip side I developed a stiff and painful neck which lasted for 3 months until I stopped the collagen. I’ve recently discovered that glycine can be converted to oxalates with insufficient vitamin B1… making sense of my neck problems following the collagen. So now I’m supp with B1 to see what happens!! It’s so involved and like an onion…particularly when you’re a layperson. But I’ve found the only way is self experimenting.
Definitely like an onion. Chris Masterjohn recently did a podcast on glycine — and mentions salicylates and oxalate issues. They suggest that oxalates may be more due to the other components in collagen, and that glycine itself is less problematic. Chris also mentioned the need for b6, although personally I cannot tolerate that.
The whole oxalate issue is very complex and confusing. As Elaine mentions above, when she increased her oxalates, it stopped the so-called ‘dumping’. I’m not sure if ‘dumping’ is a real thing, but it suggests that lowering oxalates might not be the answer.
Also worth noting that cissus quadrangularis is like THE number one herbal remedy for tendonitis — yet it’s super high in oxalates.
???
Thank you for your story. I was having sal and oxalate problems and other issues and went to Dr Rostenburg who is a master in genetics. I hope you have read his stuff! He put me on a protocol of soaking in Epsom salts every night for a couple weeks and after that at least 3 times a week. The sulfur is needed to attach to the oxalates and take them out of the body. Also, coffee Enemas (high grade coffee beans) to help clear the phase 2 liver problem and exit out all the salicylates. Here is a blog post on it. He has more info though and YouTube videos on all of this.
https://www.beyondmthfr.com/side-high-oxalates-problems-sulfate-b6-gut-methylation/
I highly recommend him as he was able to look at my Oats and other tests and write up a huge report of my issues and how to solve them. Everything was over the phone and a consult was $250 for the first time and less after. Not sure if you have figured everything out but there’s some suggestions.
Rostenberg was a DISASTER for me. He knew I had salicylate and oxalate issues, yet put me on HIGH dose herbal antifungals/antimicrobials which made everything SO much worse, and I was in really bad shape when I contacted him.
He also missed a marker for high c-diff on my OAT test, which led to 18 months of diarrhea. I was told later I could have died. I certainly felt like it.
And 2 years later I’m still paying the price. Anyway, I’m glad he helped you, but I’d personally stay away from him like the plague.
Hi Lisa, May you share this dr’s contact info?
Hello! Thanks for writing such a complex and informative article. What do you mean by sensitivity to methyl donors? I ask this because I haven’t been able to take active B vitamins, whether it’s liposomal or water soluble. I get a depressed and very emotional reaction after it’s absorbed. I tried getting B vitamins from beef liver capsules, but the same thing happened! Also, what kind of iodine do you take? I take nascent form and it makes me feel a little strange.
Thank you
Elaine your story resonates very much with mine. Thank you for sharing your story.
I agree with what Kelly said, that many doctors/researchers/scientist specialize in one area and don’t see the big picture. Everything seems a nail. By the way, Kelly, can you link a study where glycine and/or sugar degrades salicylates?
Me too, would like to have an update on how you’re doing Elaine.
Best wishes,
Mary
Mary,
Here’s a study that showed glycine is depleted by salicylates and that glycine helped increase excretion of salicyluric acid:
https://pubmed.ncbi.nlm.nih.gov/2271231/
Note that aspirin is a salicylate, originally made from willow bark.
I have a hypothesis that salicylate intolerance has increased because hardly anyone eats the whole animal like they used to. How many people cook a whole chicken, so that the glycine from the skin and bones (the gelatin) is eaten along with the rest of a meal. Myself, I ate boneless, skinless chicken breasts for probably 10-15 years, along with a lot of high salicylate foods and am paying the price.
Here’s another link noting that glycine helps to process benzoic acid and other phenols (salicylates are a type of phenol) and in doing so increases Hippuric acid in the urine. So if you’ve had an OAT test, and your hippuric is high, it may be from salicylates/phenols.
https://hmdb.ca/metabolites/HMDB0000714
There’s also a great podcast with Chris Masterjohn where he talks about the importance of glycine and mentions salicylate intolerance:
https://chrismasterjohnphd.com/podcast/2018/01/08/why-you-need-glycine-a-panel-discussion/
They suggest one needs at least 10 grams/glycine a day. I’m trying to work my way up to that…
Best of luck.
I really like your post.
To make treatments effective get rid off parasites first otherwise all modalities including diet elimination B6 Mg B1 sulfate and others of limited value.
Best
Sam
Chronic Vitamin A toxicity.
A classic nonsensical comment from ‘Dr. Google’. 🙂
Well I totally get the feeling of feeling drugged after you eat. This happens to me with any foods. I’ve ended up on intravenous feeding. I’ve no idea whats going on. I’ve ordered a dna and methylation testing which I’m hoping will give me answers. Julia I would love to connect with you if possible?
Elaine, you did a good job in describing a lot of what i’ve been through. Concerning your B12 problem. I just want to verify that you did a methylmalonic acid test on your organic acid test and it was normal???
“Normal” serum B12 may not accurately reflect true tissue B12 stores. Therefore, if serum B12 is borderline low, I routinely get methylmalonic acid and homocysteine for patients in whom I need to “prove” deficiency (for myself, patients, or third-party agents) or monitor closely (ie, those with neurologic symptoms).https://www.mdedge.com/familymedicine/article/62530/hematology/how-do-we-evaluate-marginally-low-b12-level
So, I had the methylmalonic acid test done on the OAT test and B12 appeared high, but actually it was negative and I had no B12. I had to take another form of B12 than the one that I was taking and it worked. Adenosyl form. Other forms do not work for me.
I could be wrong about a lot of this stuff, but I feel they are all connected. Have you checked youtube and searched for oxalates and Sally K Norton. She is trying educate people about the problems of oxalates which affects histamine and mast cells. I’ve been reading about them and they seemed to be all connected. I’m doing the low oxalate diet and experiencing dumping and improvement in sleep. All of this is so complex
I’m worried I’m low in thiamine. I get dumping syndrome and stomach pains. I can’t eat anything. I’m sure I’m low in D. I get severe anxiety as well when the dumping happens. My knees and ankles have very reduced reflexes now, too but doctors don’t care.
Hello Elaine,
Thank you for sharing your journey. I’m sure it resonates with so many, including me. I’m curious as to why you decided to avoid bicarbonate, rutin, and D-ribose? Do those substances have a negative impact on thiamine, or did you have different rationale for excluding them?
I’m grateful for warriors like you who so generously share their experiences and insights. All the best to you in your wellness journey!
Caite
I’m so relieved to know I’m not alone, and that there are people out there who understand and agree. It can make a person start to feel crazy. Thank you.
A long-long journey you have traversed, and thanks so much for putting down those milestones and struggles so elegantly and clearly, Elaine.
I was listening into the Dirty Genes summit over at Ben Lynch’s web site — as an interested ally of people in my life who are struggling and as a journalist. I did the free version of this seven day summit, with more than 60 hours of information from dozens of experts.
https://go.dirtygenessummit.com/own-dirty-genes-summit
Alas, as if we didn’t already know this, but Western Medicine is not only behind the information curve, but arrogantly so.
Their international credo has dissipated with the sands of Capitalism:
The World Medical Association (WMA) in 1949 and again in 2006 specified: “A physician shall not allow his/her judgment to be influenced by personal profit or unfair discrimination,” and “shall not receive any financial benefits or other incentives solely for referring patients or prescribing specific products.”
Here’s how a doctor in California puts it:
The AMA has betrayed their ancient oath as healers, in service to an economic system that puts profits before people. While deadly epidemics of cancer, heart disease, obesity, diabetes, violence and addiction haunt the nation, we have been led into a partnership with Dracula.
Dr. Nayvin Gordon is a Family Physician in California who has written many articles on Health and Politics.
https://dissidentvoice.org/2018/01/the-exsanguination-of-medical-ethics/
Again, thanks for your detailed and important article above!
Dear Elaine,
Thank you for sharing. Magnificent job writing your experiences. I utilize the NAET technique & have helped people with absorbing nutrients. There are practitioners worldwide. Dr. Mike
Hi, your story has many similarities to my and my children’s (both diagnosed with autism). We have not been able to do testing to discern if we have a thiamine transport defect. Where did you access this information? Have you ever tried Benfotiamine? We seem to be able to improve thiamine transport by using selenium, biotin, and benfotiamine. I found a study about a child with biotin-thiamine responsive basal ganglia disease. It identified an issue with this transporter – SLC19A3. We also had high urinary oxalate and interstitial cystitis prior to including these supplements. I had a blood test that showed antibodies to a previous Lyme infection. We cannot possibly do low carb due to our biotin issue. Would love to connect and compare notes.
Hello Melanie,
Email sent!
Hi Melaine, I have severe IC and would love to chat with you more about these supplements.
Elaine,
Please contact me as I have a lot of your symptoms. I get a tremor like feeling in the back of my neck and head, especially at night. I’ve had some lessening of symptoms on the SCD diet, which avoids Disaccharides and polysaccharides.
But I think healing our badly damaged guts is the key out of this quicksand.
If we only had fecal microbiota transplants in this country!
Thepowerofpoop.com
James
Hello James,
Email sent!
Best’
Elaine
Elaine,
Thanks for sharing your history. I’m sorry you are dealing with so much. I’m in a similar situation as I’m dealing with chronic thiamine deficiency, which I now know has been life long. I don’t think my history has been as complicated as yours, though. I’d like to ask some questions. What types of “over-methylation” symptoms did you get from Choline? Are you still eating low oxalate grains? 3 out of 7 of my SLC19A1 homozygous, I believe you’ll get my email address when you get notification of my post here, so if you have time, I’d love to connect.
Thank you!
Lisa Perry
Thanks for your comment, Lisa. I’ve sent an email and look forward to being in touch.
Elaine, I don’t know if you’re still posting or following these replies, but you’ve gotten a lot of misinformation from some of your doctors or advisors. Susan Owens is to be commended for trying to help in this regard, but others feel she’s too stuck in her hypothesis, and unwilling to look at the bigger picture. Just as one example, think — think how many hundreds of millions of people have taken antibiotics and destroyed the main oxalate degrading probiotic — yet they don’t have oxalate problems.
There are other probiotics that break down oxalates, like b. infantis for one. There are probiotics that break down phenolic compounds as well.
The SLC19A1 transporter isn’t ‘broken’. If you have this mutation, it’s just ‘expressing’ differently at this time. It doesn’t mean you’re genetically doomed. In fact, it’s just one of several folate transporters, and a common mutation at that.
Some other things to point out. You seem worried that you’re not getting enough choline or acetylcholine. Were you aware that too much can not only keep you awake, but drive you mad if it’s not broken down by acetylcholinesterase? MANY foods and herbs inhibit acetylcholinesterase, so that may be why you’re reacting to so many foods.
And regarding salicylates: Glycine is the main way to detoxify salicylates, but also glucuronidation (using calcium d-glucurate, or just glucose — yes, believe it or not). Also sodium bicarb helps alkalize the urine so salicylates can be more easily excreted. It’s shocking how many ‘salicylate intolerance’ sites and articles there are out there, but NONE of them talk about how to empty the sals bucket, which is why one has a problem in the first place — the bucket gets too full.
Anyway, best of luck. I hope I didn’t come off as a know-it-all. I certainly don’t. I’ve been sick for 20 years (quite functional until about six years ago), but still believe I can recover and you can too. Hope you’re doing better.
Kelly I would love to hear more of your thoughts since they fall in line with my experience. Do you have a blog or a FB page where you discuss this?
Hi Kelly.
What are u doing up at 5:30 in the morning? I would love to connect with u on these matters u have discussed.
Hi Kelly, thank you so much for this comment. I’m going through so many of these symptoms and the information you just provided resonated with me so much. Because I am completely unable to use fat for energy even with betaine hcl, thiamine, etc. I react to all the supplements with anxiety etc. I’ll try the b. Infants to see if it helps with oxalate issues. So lately I had to incorporate glucose, because constipation on low carb high fat gets so bad. Even lost my period. It seems like when I incorporate sugar, like dextrose I feel better. So I’d like to talk to you about That too if you don’t mind. Could you email me please? medinalaura04@gmail.com. Or if you prefer i can email you. Thank you so much again, I hope I can talk to you and listen to your story and journey to healing.