Quote from Sarabeth on May 29, 2022, 7:39 pm

Over the past 13 years, I have implemented some dietary interventions that have hugely helped my family. However, plenty of things didn’t work (“elimination diets,” I’m looking at you!!), and there are always remaining problems. I have definitely developed a way of evaluating interventions and before I even consider trying something, and these days it has to be different than the zillions of things we have tried over the years with little or detrimental effect. (Macro nutrient combos we have tried (always whole foods, organic, home made): low carbohydrate, low-sugar high-starch, high protein low carb, moderate proteins/carbs/fat. Also, low histamine, low salicylate, low oxalate, high resistant starch, super high plant-based with green juice and tons of veggies in addition to meat/fish… Plus we’ve done grain-free, nut-free, egg-free, dairy-free, and all the other common allergens-free. In terms of supplements, we have tried a bazillion different combinations, mostly with no or ill affect, and a very few combos with lifesaving benefits.)

There are certain interventions that always seemed like they should work for us, and yet they never did. And then there are other things, like gluten (and dairy, for some of us), that have had noticeable ill affects whenever we’ve tried to re-introduce them, every time.

I now have a few rough categories into which I group various interventions: there are overall dietary macro nutrient and food quality tweaks, and these can have large effects, especially for someone coming from a standard processed-foods diet (although not so much for the person who’s been trying everything for a decade or more). Then there are supplements, which can be taken in very small or large doses, depending. Then there are short term and more drastic interventions that still use natural foods and/or supplements, but do so by either megadosing, or strict regimes (such as fasting), and which attempt to jumpstart some biological processes that seem more resistant to all of the more gentle methods but simply can’t be sustainable longterm.

The biggest underlying issue that I generally think needs to be addressed is our poor, beleaguered guts. Our modern world appears to do great damage to gut flora, we have a very little real knowledge or action steps about how to restore the trillions of microbes once they’ve been messed up, and these microbes are our biggest missing allies once symptoms of chronic illness sets in.

GAPS was one of the diets/interventions that had the most effect on our physiology and functioning, but which stopped at probably 60% in terms of restoring our guts, and while we were eating that way it required that we consistently avoid certain entire food groups, and made me feel that our overall resilience was not as great as I wished after many years on the diet. Overtime, I tried so many things to “feed and re-seed“ our guts: probiotic pills, tons of fermented vegetables and yogurt and kefir (all homemade), and tons of vegetable fiber and later all kinds of plant fiber as pre-biotics. Some of these things also had dramatic effects, but only in the short term and not all in good ways.

Before I discovered the ways my liver and endocrine system were suffering hugely under the influence of vitamin A toxicity, I had temporary good luck with William Walsh‘s nutrient therapy program, which while not a magic bullet, allowed me to pick myself up off the floor and have five relatively good years of functioning, even though my inflammation and its associated markers (such as sky high cholesterol, very low vitamin D and zinc) never normalized despite the megadoses I was taking. On our low vitamin a diet, I went from taking handfuls of supplements down to none at all, my cholesterol normalized for the first time in a decade, my vitamin D and zinc levels stabilized without me needing to take the supplements anymore, I was finally able to eat beans without distress and with accompanying digestive improvements, and I have generally felt better than since I was a teenager… One of the most telling signs to me was that I have been able to eat MORE types of foods and fibers than I used to, with better digestion than before - my diet was expanding rather than contracting. And everyone else in the family has felt much better too.

Of course, still not perfect. 🙂 And so the continual search for what to try next… Not because it’s an emergency, but because the cumulative number of symptoms in the family niggles at me, especially when I’ve tried all the things I could think of before.

Something that a doctor once talked about, that I thought was interesting, is the idea that rather than trying to replace all the unknown missing gut bacterial strains, we should instead ingest a certain complement of nutrients that _should_ generally be produced by our guts but isn’t currently. Over time, says this doctor, with the digestive system bathed in nutrients, the gut flora will return, begin creating the nutrients themselves while utilizing the nutrients they need, and the supplements get gradually reduced as that process kicks in independently of the pills.

Specifically, this doctor is all about B vitamins, since these are ideally produced and regulated by gut bugs, and her protocol had a gradually-reducing complement of Bs that, in theory, would jumpstart the gut’s ability to produce them over the protocol’s time-frame of a few months to a couple of years. I found reasons not to try her protocol from the beginning, because I have had a historically horrendous reaction to certain B vitamins as supplements, which I will never attempt to take again (methylfolate). But I’ve also taken various B vitamins that caused a net positive gain when supplemented at the time (B6 along with zinc, and also B12). So I guess the one thing I took away from that doctor’s idea was a reminder that the vitamins are powerful, and that they are connected intimately with our gut functioning. And I am very curious about any interventions that can potentially improve gut function by jumpstarting the microbes themselves, because after years of fermented foods and probiotic pills, I can say with certainty that these do not do miraculous things for my family’s guts, delicious and nutritious as they are.

So that brings us right around to my family’s current set of remaining symptoms and the intervention we’re currently experimenting with (high dose thiamine (B1) therapy). Family symptoms I’d love to improve: constipation, diarrhea, IBS (alternating D & C), chronic fatigue, varicose veins, mouth herpes, overall virus susceptibility, insomnia, bedwetting, poor sleep, and as always, a feeling of fragility in the sense that there are still a large number of foods that definitively trigger many of the above symptoms no matter how many times we have tried to re-introduce them. Basically, our guts still seem quite fragile in the collective family sense!

According to some of the stuff I have recently read by Dr. Derrick Lonsdale and Dr. Constantini, beri beri is not just a problem for people who are starving and eating low-protein diets based on white rice: many people are nutrient deficient (especially when their diets are high in sugars) and can suffer chronic or acute levels of thiamine deficiency. Fascinating case studies are always interesting…

These doctors discuss another problem apart from deficiency, which is dependency. (And they definitely do not in my opinion see the whole picture, since for example they don’t recognize the ways that vitamin a toxicity can use up B vitamins…although of course there are many many ways to attempt to effect healing, so I’ll grant you that perhaps megadoses of B1 are as legitimate as, perhaps, reducing vitamin A or taking strong drugs of many sorts, etc., and it is conceivable that there are many ways to effect similar healing results - it’s just that at this point, I’m looking for new things I haven’t tried before, rather than the same old dietary tweaks that didn’t work the first three times we tried!)

Anyway: dependency, if I am understanding it correctly, can occur when certain very important enzymatic functions are damaged because of the lack of thiamine (particularly necessary for these particular processes, and particularly deficient not only in many Standard processed diets AS WELL as many gluten-free, “gut healing” diets that many of us have attempted over the years. This thiamine problem can cause a large number of bodily processes to jam up and slow down, resulting in the familiar multi-symptom situations that are so common in chronic disease. Of course when you read these doctors’ ideas, they are wielding a vitamin B1 hammer and everything looks like a nail. I am specifically interested in their hammer, though, because so many of our remaining issues we have, have to do with the gut. The idea is, that in order to jumpstart enzymatic functioning, one needs to take absolutely enormous quantities of vitamin B1, hundreds of times the normal physiological dose, because the body’s capacity to absorb what is needed has been greatly damaged and it will take a while to catch back up.

After I had satisfied myself that gigantic doses of this particular vitamin would likely be fairly nontoxic in the short term, I decided to try it, albeit with much lesser doses for lesser sized people! We are all seven trying the following: super enormous doses of vitamin B1 (thiamine Hcl), divided into two doses at breakfast and lunch. Also, magnesium once a week as a cofactor. (Adults/teens are trying 2000mg B1/day; Smaller kids 400mg/day; baby 2-3 mg/day. Magnesium: 400mg once per week)

We aren’t changing anything else, so for once it’s an interesting and simple thing to monitor.

I never make major proclamations about these things until about six months in, but very interesting results so far:

After two days, #4 said to me, “I have been waking up early in the morning and have lots of energy! Those pills you’re giving me are CHANGING me!“

I noticed after two days that my pooping was much better than usual: regular, good consistency, no straining at all, no diarrhea, but also interesting was just the daily signal to go. I have had fairly good digestion for the past nearly-three years of our low-A experiment, but probably once a week or so, with no changes in my diet or anything that I could tell, I would just Stop Up. I’d need to do an enema, it would be annoying, and yet it was as if my nervous system was failing to regulate my urge. Anyway, the interesting thing is that the past two weeks I haven’t had that happen once. Obviously need to report back after more data has been gained! I feel like I’ve been sleeping more deeply, dreaming much more, and having more energy (although could be just summer weather, so too early to tell).

The baby has had a good appetite all along, but constantly seems “triggered” in the gastrointestinal realm: too much fruit, any dairy, any eggs, and any pork will all cause him to have total diarrhea and giant red rash on his butt. In the past two weeks, his poops have become much more normal, actually baby logs, and no red rash. I have even successfully given him some of my gluten-free sourdough which has eggs (and which before caused diarrhea on multiple occasions), and three times it has NOT been problematic. Will see if it continues and whether the baby can eat more foods going forward.

Another child has reported “better poops.” Still another child reported “a one-wipe poop today!”

Another child reported improvement in episodes of “dissociation” feelings.

Will see if any improvements are forthcoming in the Urinary Department. That would be fabulous…