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 fiancee’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.
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 Cantanzero. 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 Cantanzero; 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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