When I first created Hearthwilde, I didn’t really have a “health story” to tell.
That has certainly changed, and my health issues dealing with SIBO and extreme food sensitivities have become the dominating influence in my life. I write about these issues here because it’s therapeutic for me, but also because I hope it might be helpful for some of you.
This is a little long, but here’s the story of my health journey:
I’m Blaming Antibiotics
In November 2017 my life was changed by a single dose of antibiotics, taken for strep throat.
While I did previously have gut and other health issues prior to that moment, things really started to go downhill for me after this.
Thanks to the knowledge I have gained of my gut microbiome, and what my food chemical sensitivities have helped me understand, it’s easy for me to see a before November 2017 and an after when I think about my health journey.
Before – Not Perfectly Healthy But Not Bad
Before, I most likely already had SIBO, but didn’t know it yet. I had identified gluten and corn as irritants, and avoided those ingredients. I had multiple chemical sensitivities and other environmental sensitivities, but I was fine as long as I avoided those triggers.
I ate a broad, omnivorous diet that included a wide range of fruits, vegetables, beans, grains, nuts, seeds, herbs, and spices, and also included meat, eggs, and dairy (free range, grass fed, ethically sourced). My diet included wild-foraged foods, edible weeds, and lots of fermented foods.
Food was a great passion for me and I was constantly experimenting with fermentation, gluten free baking, and exploring different food cultures.
My husband Chad and I spent time together tending to and expanding our permaculture-style garden, and went hiking frequently.
I was energetic, excited about life, and able to carry out projects and plans.
After – First Came Insomnia
After the November 2017 antibiotics I developed severe insomnia. I went through a period of several months where I could usually only sleep for two or three hours a night. At my worst I went a solid 7 days without any sleep at all.
My first major breakthrough was in April 2018: a calcium supplement – it allowed me to get at least a few hours of sleep every night, not enough, but better than none at all. (I no longer take calcium supplements for sleep.)
New Gut Problems
At the same time my sleep problems started, I started to experience heartburn and acid reflux, something new to me, as well as difficulties swallowing supplements.
Time went by without me getting much relief, and gradually my symptoms worsened. My gut issues intensified and I would often be debilitated with gut pain and fatigue after dinner.
My whole body was feeling inflamed.
I tried a couple of different diets – Low FODMAP, and then AIP, neither of which made much of an impact on how I was feeling.
COVID Enters the Scene
In March 2020, after flying home at the beginning of the COVID pandemic, I nursed a mild “cold” for about ten days, which never really cleared up, then seemed to come back with a vengeance.
During this rebound, my lungs felt like they were made out of lead. I tried to get tested for the Coronavirus but was not a severe enough case to waste a test on at that point in the pandemic. After a couple of months of feeling sick, I transitioned back to feeling pretty crummy but being somewhat functional.
However, my new normal included severe brain fog and severe inflammation. My resting heart rate was extremely elevated and I frequently had arrhythmias. For the first time ever, my blood pressure was a little high instead of my usual, which was quite low.
My chest felt heavy and weird, and I wondered if I was developing asthma.
I was also having a hard time getting things done. Projects I started remained half finished.
And I was finally starting to notice that even my non-gut symptoms got much worse after I ate.
Oh Boy, Exercise Intolerance Too!
Meanwhile, my ability to go hiking had also been affected – at the very worst, on one of my hikes with Chad, I was only able to walk about a quarter of a mile before my wheezing lungs and speeding heartbeat got the better of me, and in despair I told Chad I needed to go back, I just couldn’t walk any more.
In comparison, a few years before that day, we had gone on a seven mile walk in the same area that left me feeling sore afterwards, but certainly not winded or like my heart was going to beat out of my chest.
I felt like everything was going wrong in my body, and I didn’t know what to do about it.
When I got into bed at night, I would see my bare legs in the mirror and felt surprised each time – surprised that I didn’t look as old, decrepit, and achy as I felt.
A Self Diagnosis – Histamine Intolerance
Along with the pain and discomfort I was experiencing, I was feeling extremely depressed about not being able to enjoy the activities that used to bring me joy.
But I kept looking for answers and finally my efforts paid off.
My next big breakthrough was in the fall of 2020, when I learned about histamine intolerance and tried a low histamine diet. Within a week I was feeling much, much better.
I had finally zeroed in on something.
Not only did moving to a low histamine diet alleviate some of my respiratory symptoms and help lower my heart rate, it did something I wasn’t expecting – it improved the extremely painful periods I had been experiencing for over a decade.
The only problem with my discovery of histamine intolerance was that everything I read about it directed me to a condition called Mast Cell Activation Syndrome (MCAS), which was extremely hard to diagnose, and (it seemed) impossible to cure.
This was not a very optimistic outlook.
Histamine Intolerance Led Me to SIBO
After my low histamine diet helped me clear my head, I realized that I needed to find help dealing with the issue I had finally pinpointed.
Talking to two functional medicine doctors, they both said, “histamine intolerance can be caused by SIBO,” and encouraged testing.
With the moral and financial support of my parents (Chad and I were both underemployed at the time), I started to work with one of these doctors.
Within a few months I got my SIBO diagnosis – yes, indeed, I was positive for SIBO (Small Intestine Bacterial Overgrowth), and my levels were high, which might indicate a long lasting case.
As I learned about SIBO and how certain foods feed bacteria in the small intestine, causing extreme pain, I recognized that the disease must have first started for me in 2004, when I first developed severe gut pain.
In fact, in approximately 2006 I was told by a GI doctor that I had IBS, but there was nothing wrong with me, I just had gas in my small intestines.
Um, yeah, doc, now we know that that is SIBO. The small intestines aren’t designed to deal with that kind of gas, which is why it’s so painful.
With hindsight, I have realized that my first round of severe SIBO symptoms lasted for about three years, then my gastrointestinal symptoms decreased to a manageable annoyance for about ten years before things got worse again.
Enter the Low Histamine Bi-Phasic Diet
When we discussed the results of my first SIBO test, my functional medicine doctor recommended I try a low FODMAP diet to help with symptoms.
I didn’t see how I could do that since I was already on a restrictive diet, plus I had already tried it and not been impressed with the results. (Well, I thought I was on a restrictive diet, but I hadn’t seen anything yet.)
I did some digging online and found the Low Histamine Bi-Phasic diet, a diet designed by Dr. Nirala Jacobi and dietician / nutritionist Heidi Turner for those with both histamine intolerance and SIBO.
Apparently these two conditions occur in parallel more often than you might think!
This diet is one that excludes foods that ferment easily in the gut, which is why most grains (except white rice) are excluded.
2021, A Year of Ever Increasing Restrictions
As I adjusted my dietary habits to this new way of eating, yes, I did get relief from some of my bloating and gut pain. However, I developed some new weird symptoms – my hands started getting inflamed, and my toes started swelling. Chad took one look at my toes and said, “that looks like gout.”
Thanks to Nirala Jacobi’s SIBO Success Plan, a course for patients, I learned about other food chemical sensitivities in addition to histamine intolerance.
As I learned about salicylate sensitivity, sulfur sensitivity, and oxalate overload, I couldn’t really tell which if any matched. It seemed like I had some of all of the symptoms.
Nonetheless, I thought I would try lowering my oxalate intake and see if it helped. I later realized that when I had adopted the Low Histamine Bi-Phasic diet I had unknowingly increased my oxalate intake.
Consciously lowering my oxalate consumption got rid of the gouty symptoms, and soon that feeling of being very old and achy disappeared as well. Overall, I felt less inflamed. My period pain also continued to decrease and was now virtually nonexistent.
However, my morale was not great. I felt like I was peeling an onion in my search for better health – I just kept finding layer after layer of problems.
I began learning about oxalates, and discovered that problems with this plant defense chemical are frequent among those with gut dysbiosis, which is usually caused by antibiotic damage.
First SIBO Treatment
While I lowered my oxalate and stayed on the Low Histamine Bi-Phasic diet, I did an initial SIBO treatment.
I had tested positive for high values of both hydrogen and methane, so my treatment consisted of berberine, neem, uva ursi, and allicin.
This treatment did improve my gut issues (and, I believe, the low oxalate diet also, unexpectedly improved some gut issues). After this 8 weeks or so of treatment, I felt about 75% better as far as my gut was concerned.
However, I started having a lot of skin reactivity, arrythmias, and lung issues during this period of time. I knew something was still wrong and I kept looking for answers.
Salicylate and Sulfur Sensitivity
On the positive side though, I finally understood why I sometimes felt like I was developing narcolepsy after meals – something I thought of as a “food coma.”
And if adjusting to salicylate sensitivity weren’t already hard enough, I finally realized I was reacting to high sulfur foods as well, which made up the bulk of my diet at that point.
My SIBO symptoms had shifted to encompass hydrogen sulfide producers, which were thriving with the meat and butter I had been eating trying to fill myself up and stop losing weight.
Understanding the Causes of My Histamine Intolerance
Luckily I had enlisted the aid of a savvy dietician / nutritionist who helped me understand how these issues were interrelated and the role my liver was supposed to be playing in detoxing excess hydrogen sulfide and salicylates.
She helped me understand how these other food chemical intolerances could actually be the cause of my histamine intolerance.
I stopped being so focused on histamine content of foods because I had realized it was these other problems driving the bulk of my histamine reactions, not the histamine content itself.
Nonetheless, eliminating problematic food chemicals helped my symptoms, but left me with very little to eat.
Beginning Gut Microbiome Restoration
Feeling pretty desperate at finding myself in a nutritional dead end, at the beginning of 2022 I started to work with a naturopathic doctor (ND) who specializes in gut microbiome restoration.
I had become convinced that my problem wasn’t just SIBO, and wasn’t just MCAS, it was that things were fundamentally amiss in my gut.
This was confirmed with a stool test that my ND analyzed. I didn’t have enough bacteria associated with beneficial health states on one hand, and on the other, I had too many microbes associated with negative outcomes. (Others might call these “good bacteria” and “bad bacteria” – I worded my explanation differently on purpose.)
In other words, I had gut dysbiosis.
This practitioner encouraged me to start adding more plant based foods into my diet, even in small amounts.
Part of my gut microbiome restoration plan is to eat resistant starch, a few servings of legumes each week, and to aim for forty different plant foods a week.
Having this goal in mind felt daunting, but it also made my gut healing process feel more like a game with a clear goal to aim for – something I apparently really needed to boost my motivation!
My ND also considered my symptoms and told me she thought some of them were from endotoxemia – the toxic effects of pathogenic bacteria.
It was hard for me to embrace this hypothesis at the time, but as my arrythmias have decreased with SIBO improvements, I’m starting to think she was right.
I had already been tested for leaky gut (aka, “intestinal permeability”) by my functional medicine doctor and was told the result was negative. My ND looked at the same test result and told me she interpreted it differently, explaining that just because a value was considered “average” didn’t mean that it wasn’t leaky.
I took another leaky gut test and that one gave a clearer positive.
Leaky gut can cause food sensitivities in itself as food toxins are allowed into the bloodstream rather than getting filtered out through the normal digestive process.
The leaky gut piece of the puzzle made sense to me since my food reactions happen fairly quickly after eating – the triggering food chemicals are getting into my bloodstream faster than they would otherwise.
The first expansion I made was to try adding some higher FODMAP foods back into my diet.
I switched from white rice to brown rice with no problem, and even felt kind of dumb I hadn’t tried it sooner.
I would also eat a few chick peas, or a sixteenth of an apple (peeled, for lower salicylates).
These experiments were going ok, so I just kept increasing. Sometimes things would go bad – I would make red lentil pasta and (every time) I would inevitably eat too much of it and then feel horrible afterwards.
Eventually my “safe” diet (low oxalate, low salicylate, low sulfur) included brown rice, small portions of some pre-cooked (ie, canned or packaged in pouches or tetra paks) chick peas or lima beans, and small portions of certain vegetables, such as cooked carrots or celeriac.
At this point, even certain lower salicylate foods like iceberg lettuce caused me extreme brain fog and feelings of hypoglycemia.
Treating Hydrogen Sulfide SIBO
However, if I wanted to expand my diet, which was essential for rehabilitating my gut microbiome, I needed to try some plant based herbal medicines.
This part was tough because the plants used in herbal medicine can potentially be high in salicylates. There’s really no way to know until you try them whether you’re going to react or not.
I decided to have faith in my ND and in my body’s ability to adjust, and introduced the herbals that were supposed to help with my hydrogen sulfide SIBO by starting with extremely low amounts.
I have been able to slowly get used to a few botanicals. One in particular, gynostemma, worked also as an adaptogen and made me feel really positive and mellow.
I believe that by lowering my H2S somewhat, it gave my liver more capacity to process salicylates, and I can now eat some moderate salicylate foods without as many problems.
Not Done Yet, There’s EBV Too!
In October 2022 I finally did a fresh round of blood testing. I had asked my functional medicine doctor if we could test for immune system issues. Although I felt like most of my issues stemmed from food processing problems, since 2020 I have felt like something might be going on with my immune system, which is why I tried the AIP diet.
I got my results and looked at them before my appointment with my doctor and was expecting her to say, “yeah, you tested positive for these things, but it doesn’t mean anything.”
Well, that’s not what she said.
While, happily I didn’t have any markers for autoimmune disease, my Epstein Barr Virus (EBV) antibodies indicated a chronic infection.
I’ll write more about my experience with this diagnosis in a post at a later date, but in short, this issue has also been taking up my immune system’s resources, leaving me feeling very low energy, causing a chronic sore throat, and more recently, causing me discomfort in my underarm area because of swollen lymph nodes.
So I have had to layer in an EBV treatment on top of my SIBO treatment, which has in some ways gone well, and in other ways been tricky. My liver can only process so many plant compounds, it seems.
While I do think chronic EBV explains some of the longer term symptoms I was experiencing before my catastrophic dose of antibiotics in 2017, I now believe that I did get COVID in March of 2020, and that what I experienced the rest of that year was in part due to a full blown EBV reactivation. (Researchers are finding that part of long COVID may be EBV reactivation.)
Optimism for Plant Based Healing
As of December 2022, I’m still incorporating parts of my EBV treatment into my routine, but have already gotten relief from my most obvious EBV symptoms. My sore throat is mostly gone, as is the discomfort in my underarms.
I say “mostly,” because after a particularly stressful day or indulging in some meat and cheese during the holidays, these symptoms have returned.
I’m not worried though, because the same remedy that will heal my gut will also help to put my EBV back into a dormant state – a diet focused on nutrient-dense plant foods.
Within less than a year, I have gone from taking ZERO plant based supplements to taking (and tolerating!) several, and most excitingly, I have already started to meet my goal of consuming at least 40 different plant based foods every week.
Feed the (Microbial) Children
If you are reading this because you have also had to become a medical detective trying to piece together your own gut health quandaries, then you have my empathy. I hope my story gives you hope as well.
The scariest of my symptoms have practically disappeared, and I am now enjoying so many more flavors in my foods and starting to feel like a normal person again when it comes to my diet.
I could probably eat 40 plant foods a week without reacting at all, but I am constantly testing new things to see what I can get away with. Some things go down without a hitch, others might cause my body to get inflamed or a curtain of brain fog to lower over me.
Part of my progress with this has been thinking creatively, looking to foods I used to eat by the handfuls, and eating instead just a teaspoon, or turning to a wider variety of grains and legumes (which are mostly all low salicylate anyway).
I can now eat small amounts of olives, cornichons, chestnuts, hemp seeds, pistachios, blueberries, and cherries as part of a low oxalate, low to moderate salicylate, low sulfur diet. That’s in addition to brown rice, red rice, black rice, fonio, sorghum, and millet as far as grains go, all of which (apart from fonio) I soak prior to cooking, just like I do with my brown rice. I can eat many types of lettuces now, as well as cucumbers, yellow summer squash, and carrots. And I’ve expanded my legumes to include small quantities of mung beans, red lentils, brown lentils, and black eyed peas in addition to chick peas and lima beans.
I have started fermenting my gluten free sourdough starter again and making baked goods with it, which no longer cause me any histamine reactions.
I can even get away with a little habanero hot sauce (made from super simple ingredients) a couple of times a week.
Food with flavor is better for you than food without flavor, and getting here has been worth all the trials that didn’t go so well.
Help the microbes and they will help you, that’s the refrain I keep in mind. I eat to keep my inner microbial children happy and healthy, and I know that they will return the favor.
Thanks for reading. Wishing you improved health!
Updated December 30, 2022