This week (3/27/25) I hosted a class on histamine intolerance & mast cells activation syndrome at the Vermont Center for Integrative Herbalism. I gave an overview of the latest research on the pathophysiology of these disorders, how to differentiate them from one another, and how to address their symptoms and root causes with dietary changes, herbal medicine, and supplementation. You can purchase the recording of this class at this link here. But I also wanted to post a transcript of this information here on my website, so that I can cite my sources more closely and spread this information to a wider audience. A couple people in the class had mentioned that my presentation was the most detailed and comprehensive they'd ever seen, which I was surprised by since histamine intolerance is such a hot topic and so many alternative practitioners want to share their opinions about it online (often without grounding their claims in scientific research). As my regular readers know, this website is all about empowering people to take charge of their own health by deepening their knowledge of health and disease. So in that vein, here is a write up of the discussion we had in class. It will be long but I still had to cut out things for time! So please tell me what sub-topics you'd like to hear more about related to histamine intolerance & MCAS.

I care about the issues of histamine intolerance (HI) and mast cell activation syndrome (MCAS) because I developed HI myself about a year and a half ago after going on new medications for my double lung transplant. As a clinical herbalist, I have also assisted clients with histamine intolerance. It can be really frustrating for those of us with histamine issues to try to understand our disorders, not only because the symptoms can be so diverse and so uncomfortable, but because there is a lot of contradictory information online about this issue and conventional modern medical practitioners are often not educated on the subject, or dismiss our concerns as being all in our head.

Only in the last couple decades has histamine intolerance and MCAS been recognized as real medical disorders, and due to the conservatism of modern medicine, it takes an average of 17 years for new medical knowledge to reach the doctor’s office. In the mean time, alternative and functional medical practitioners plus the wellness industry have taken up the issue, but this has led to a confusing amount of information online, some of which is false or profit-motivated when they’re trying to sell us fancy, expensive supplements. So in this class I want to try to cut through all that and review the latest scientific research on the pathophysiology of histamine and mast cell disorders, and then lay out a holistic approach to addressing them from an herbalist’s perspective. I will also mention the limitations of alternative or complementary modalities, and when we should seek medical assistance. In part one of this class I will discuss what histamine intolerance and mast cell activation disorders are, what causes them, and how they differ from one another. In part two I will discuss how to address the symptoms and root causes of these disorders with dietary changes, medicinal herbs, and a few supplements.

How A Healthy Immune Response Works
Before we dive into the pathophysiology of histamine and mast cell disorders, I want to briefly describe the way that the immune system should optimally function in relation to histamine production and mast cell activation. Our story begins with mast cells, which are a type of immune-active cell that lives in our connective tissue in essentially every part of the body. In a healthy immune system mast cells help the body fight off infections and recover from exposures to toxins such as insect bites or snake venom. They also promote pain sensations, wound healing, and the creation of new blood vessels. When triggered by pathogenic microbes, toxins, or other environmental stimuli, Mast cells release inflammatory compounds like histamine, serotonin, cytokines, prostaglandins, heparin, and other molecules [5] that flag other immune cells to clean up injured tissue, kill harmful pathogens, or grow new tissue. In the graphic below you can see the mass cell releasing these compounds in a process called degranulation.

Of the many compounds released by mast cells, today we’ll focus primarily on histamine. It’s a biogenic amine, which means that it’s synthesized from the metabolism of an amino acid called histidine via an enzyme called L-histidine decarboxylase [1]. Our bodies produce this enzyme, as do bacteria that ferment upon proteins.

Amino acids are the building blocks of protein, therefore histamine can be created from the fermentation of proteins present in both vegetables and animals. When released inside the body, histamine serves many purposes including stimulating stomach acid secretion, muscle contraction, relaxation & contraction of blood vessels, and also serves as a neurotransmitter by activating certain processes in our nervous systems. And most important for our discussion, histamine causes inflammation, that is heat, redness, pain, and swelling of the tissues under normal circumstances this inflammation is positive, although sometimes painful, and leads to tissue healing. So histamine is a pretty important molecule used in a lot of bodily processes, and we can't do without it. The problem is that sometimes the body produces too much or has a difficult time breaking it down, and this can lead to the uncomfortable or dangerous symptoms of histamine intolerance, allergy, or histamine toxicity.

The body produces two enzymes to break down histamine so that we don’t experience the negative side effects of a runaway histamine reaction. The first enzyme is histamine-N-methyltransferase (HNMT), which only deactivates histamine inside of our cells [1]. The second is diamine oxidase (DAO) which has broader functions across the body. It breaks down not just histamine but also other monoamines like tyramine, putrescine and cadaverine which can similarly cause negative symptoms when they build up in the body. DAO is produced mainly in the small intestine, ascending colon, placenta and kidneys. In the intestine, DAO is produced by the intestinal villi [1] which are little hair-like parts of the intestinal cells that produce a lot of different enzymes to help us digest our foods, and also we absorb nutrients through the villi.

So in a healthy immune system the body produces enough HNMT and DAO enzymes to deactivate histamine at the appropriate time, both when its produced by our own cells and when it’s contained in the foods we eat. Something interesting to note is in pregnancy the placenta produces huge amounts of DAO, releasing about 500x more of it than in non-pregnant people, which explains why allergies, asthma, and other histamine-related disorders can go into remission during pregnancy (and then come back afterwards). [7]

Differentiating histamine intolerance from mast cell disorders
So let’s talk about what happens when histamine and mast cells get out of whack and start to cause problems. Histamine receptors are located all over the body and mast cells are active in almost every organ system, therefore symptoms of histamine overload can be very diverse.

These can include:

• skin eruptions like itching, flushing, swelling, eczema, and hives
• gastrointestinal sx including diarrhea, abdominal pain, constipation, cramping, bloating, gas, delayed gastric emptying, nausea, vomiting; and swelling, numbness or tingling of the mouth and throat
• Respiratory sx include: allergic rhinitis, post-nasal drip, sinus congestion, sneezing, wheezing, asthma, excessive mucus production, and difficulty breathing
• Cardiovascular and neurological symptoms can include headache, dizziness, sudden changes in blood pressure, fainting, tachycardia [1].

The most dangerous type of histamine reaction is called anaphylaxis. This is when so much histamine is released into the body all at once that the throat swells up so that breathing can become difficult and the blood pressure can drop suddenly as the body goes into shock. This is an emergency situation that requires immediate medical attention. For those prone to anaphylaxis, carrying an epipen with them is an important safety measure. An epiPen contains a shot of epinephrine (adrenaline) which counter-acts the effects of histamine and reduces tissue swelling in emergencies.

Now, these symptoms are generally thought to fall within two categories: histamine intolerance and mast cell activation disorders; but there is also some overlap between the two, as you can see in the top left of the graph below. Because both of these categories have been researched and described only in the last 20 years or so, there is not yet universal consensus on how to differentiate and diagnosis these disorders. And as new research is coming out we’re discovering more all the time about the underlying causes.

I made this graph to visualize my understanding of how to differentiate histamine issues and mast cell disorders based on how the mast cells are acting. The two axes of this graph are the presence of clonal vs non-clonal mast cells, and allergic versus non-allergic mast cell activation. So let’s start with clonal vs non-clonal on the vertical axis. Certain genetic and epigenetic mutations can cause a body to produce too many mast cells, which is called clonal mast cell disease, or mastocytosis. People with mastocytosis are at very high risk for anaphylaxis because there are too many mast cells that are hyper-sensitive to harmless stimuli, and can therefore flood the body with a lot of histamine all at once [5]. Mastocytosis is very rare and can be diagnosed with a blood test. Herbs and supplements on their own will not be enough to treat this disease, and pharmaceuticals are needed to prevent anaphylactic attacks and control the overproduction of mast cells.

On the horizontal axis we have allergic vs non-allergic mast cell activation. An allergy develops when the immune system has learned to over-react and release a ton of histamine when it encounters a specific substance from the environment (such as pollen, certain food like peanuts, or insect venom). In autoimmunity the body can also learn to become allergic to its own tissues. An allergy causes the body to respond the same way every time when exposed to that particular substance, even in very small amounts. Like mastocytosis, the most severe allergies are at higher risk for anaphylaxis, and allergies can worsen overtime if they’re not treated.

So, in the bottom right of the graph, we can see that people with both clonal mast cells (mastocytosis) and allergies are at highest risk of experiencing anaphylaxis. Others may have mastocystosis with no allergies (bottom left of graph), allergies with no mastocytosis (top right), and lastly, disordered mast cell activation or histamine intolerance with no allergies and no mastocytosis (top left with red arrow). This last category is where histamine intolerance and what is usually called mast cell activation syndrome (MCAS) overlap.

The term MCAS is generally used to refer to the presence of hyper-sensitive and unstable mast cells that are non-clonal. So someone can have both HI and MCAS, and it can be pretty hard to differentiate the two clinically because the symptoms are often the same. So I’m focusing our class today on this category where MCAS overlaps with HI, because this category is lowest risk for anaphylaxis and it’s where we are most likely to benefit from nutritional, herbal, and supplemental support.

What is Histamine Intolerance?
So let’s describe histamine intolerance in more detail. Histamine intolerance (HI) is a term that describes a symptom picture, not necessarily a disease with a specific cause (similar to gluten intolerance). It might even be considered a diagnosis of exclusion when other mast cell disorders or allergies have been ruled out. Histamine intolerance does not have a universal way of being diagnosed, but it is generally agreed that a person can be said to have HI if:

1. has two or more symptoms of histamine overload, which I have described above, and
2. improves with a low histamine diet, and/or
3. improves with antihistamine medications [3], and
4. other diseases like allergy or mastocytosis have been ruled out.

This is considered the gold standard diagnostic criteria for HI. We can also get blood tests to figure out someone’s particular root cause, but that may not be necessary for the majority of HI cases. Histamine intolerance results primarily from eating foods high in histamine, or ingesting substances that block the enzymatic break down of histamine. The symptoms are generally more mild than in diseases related to abnormal mast cells, although the symptoms can still be really uncomfortable or chronic. Histamine intolerant people can also have allergies, but that they are two different issues.

Histamine intolerance is thought to result from one or more of these factors:

1. a deficiency of the enzymes that break down histamine, especially DAO (this is probably the most common cause)
2. hyper-reactive/unstable mast cells
3. chronic exposure to substances that destabilize mast cells
4. An overproduction of histamine by certain gut bacteria
5. Poor liver metabolism of xenobiotics and potential toxins
6. Leaky gut syndrome

Diamine Oxidase (DAO) Deficiency
Because DAO deficiency is one of the most common causes of HI, I want to talk about this in a little more detail. Several things can cause us to become deficient in DAO:

1. Inflammation in the gut which has damaged the intestinal villi responsible for producing DAO. This inflammation in turn can be caused by an imbalance in the gut flora, which we call dysbiosis. It can also relate to IBS, dairy or gluten intolerance, Celiac disease, and modern inflammatory foods like sugar, refined vegetable oils, and junk food. 
2. exposure to medications, foods, or supplements that inhibit DAO – for example, in table 5 below is a list of drugs that block the activity of DAO. This is not a complete list, so it’s good to read several medical articles on this and then cross-reference them.
3. chronic kidney disease that prevents the kidneys from producing circulating DAO. Kidneys, intestines, and placenta are the organs that produce DAO in the highest quantities.
4. we can also have a genetic or epigenetic mutation leading to reduced DAO production (I imagine this would be less common than the other causes).

We can improve the activity of DAO in our bodies by avoiding substances that inhibit DAO, addressing dysbiosis or gut inflammation with healing foods, herbs, and supplements, and also taking a supplement of the DAO enzyme itself.

What is Mast Cell Activation Syndrome (MCAS)?
Now let me describe MCAS in a little more detail. In an imbalanced immune system that has become hyper-reactive, mast cells can become unstable, meaning that they can be too-easily triggered to degranulate and release inflammatory compounds including histamine, cytokines, and prostaglandins. Unstable mast cells can be triggered by heat exposure, latex, toxins, stress and anxiety, exercise, surgery, certain, chemicals, certain medications, alcohol and fermented foods, and more [7].

There is not yet universal consensus on diagnosing MCAS, however it’s generally agreed that there must be histaminic symptoms in at least two organ systems (for example, in both the gut and the skin), the symptoms are made worse by predictable triggers, and other causes are ruled out [3]. MCAS can occur without sensitivity to histamines in foods (HI), although many times MCAS and HI occur together.

Research done over the last several years is revealing connections between MCAS and many other disorders, including:

• anxiety, panic, phobias, ADHD, compulsive behaviors, mood swings [2], Autism Spectrum Disorders, and depression [9]
• Dysmenorrhea, painful menstruation or heavy bleeding [4]
• Chronic fatigue, fibromyalgia, and autoimmunity [9]
• Celiac disease, gluten sensitivity, and IBD & IBS [12,13]
• postural tachycardia syndrome (POTS) [8]
• Ehlers–Danlos syndromes (EDS) [8]
• metabolic diseases like diabetes [9]
• GERD [9]
• chronic kidney disease [9]
• Anemia of chronic disease [9]
• multiple chemical sensitivity syndrome [9]
• Long COVID [7], Lyme disease [10], and many other chronic infections.

Epidemiology: Understanding the Big Picture
So why do so many illnesses seem to be linked to mast cell disorders and histamine intolerance? What’s the bigger picture here?

Well, Since the middle of the 20th century the prevalence of immune disorders like allergies, asthma, autoimmunity, and now mast cell activation disorders has been steadily increasing in modern/ capitalist-colonial, and industrialized countries like those in Western Europe and North America. The map below shows in red the regions that have the highest prevalence of food sensitivities and allergies [16].

Nowadays approximately a third of us in these countries have these histamine-related disorders [11] and over 20% of us have food sensitivities [12]. Research over the last several decades has come to blame modernity’s obsession with cleanliness, its overuse of antibiotics, chronic exposure to toxic compounds, unhealthy diets that include refined carbohydrates and industrial vegetable oils, and its disconnection from the more-than-human world and the means of our subsistence (that is, farming, hunting, and gathering) [31].

The human microbiome is negatively impacted by our modern lifestyles which reduce the diversity of the bacteria and fungi in our guts and lead to an overabundance of harmful pathogens.
Our gut ecosystems are made up of several trillion bacteria, fungi, and viruses that provide essential services to the human body. This gut microbiome is responsible for educating and modulating our immune responses, digesting dietary fibers, regulating gut motility, absorbing nutrients from our food, defending us against pathogens, defending and repairing the gut mucosal barrier, producing vitamins including the B and K vitamins, producing essential neurotransmitters like serotonin [14]. When this internal ecosystem gets out of balance all sorts of problems can come up, including mast cell hyper-sensitivity and overgrowth of certain bacteria and fungi that produce excess amounts of histamine.

In addition, imbalanced gut flora and inflammation from food sensitivities can cause the junctures between our intestinal cells to loosen and allow food-derived molecules, toxins, and pathogens to pass into the blood stream where they shouldn’t be. This is called leaky gut, and it’s common in people with histamine intolerance, mast cell activation disorders, and many other inflammatory diseases [15].

But the new research on mast cell disorders coming out over the last couple of years linking chronic stress with histamine disorders [19], is causing a bit of a paradigm shift for me. That is, I’m coming to understand that all of these immune disorders are signs that the way our society is structured is intrinsically harmful to human and more than human life. And that’s a political issue. Although this class/article is focused on what we can do on an individual level to heal these illnesses, the issues we’ve been discussing are ultimately caused by the socioeconomic exploitation and inequality we experience under capitalist-colonialism, and that needs to be tackled at a more collective and systemic level. I could say a lot more about that, but I know we have limited time.

So let’s get into the practical stuff now.

An Integrative Approach to Treating MCAS
In a 2023 paper, Weinstock, Nelson, and Blitshteyn [2] offered a comprehensive treatment protocol developed from their clinical experience working with MCAS and histamine intolerance in their patients. These patients primarily had neuropsychiatric symptoms like anxiety, bipolar disorder, ADHD, panic disorder, and so on. Weinstock et al. outline several tiers of treatment depending on the severity of the case and how the person responded to each stage.

In the first tier they have patients go on a gluten-free, dairy-free, and low histamine diet for at least 3 weeks. Gluten and dairy are removed because studies and clinical experience have shown that MCAS can be triggered by these two food sensitivities [6,12]. Also in this tier they prescribe daily use of H-1 and H-2 histamine receptor blockers (H1 antihistamines are anti-allergy meds like allegra, claritin, and so on; H2 antihistamines are those that block the production of stomach acid).

Now, as an herbalist I would prefer at this stage to use herbal medicine, probiotics, and nutritional supplements before resorting to the use of antihistamine drugs. But of course, these medications are necessary to control the acute onset of symptoms. Personally, I use anti-histamine medication only when I suspect I’ve eaten too much histamine that day or when I feel symptoms of histamine overload coming on. I use Allegra or Xyzal, both of which are over the counter H1 anti-histamine drugs. I primarily control my symptoms with a low histamine diet, but for those who are more sensitive than me or have additional hyper-sensitivities like allergies, then daily use of antihistamine drugs may be needed to control sx. And we do want to control our sx, however we can!

In the second tier, if patients still don’t have their symptoms under control then Weinstock and friends added mast cell stabilizing supplements, specifically vitamin C, vitamin D3, and quercetin (which is a flavonoid derived from plants). I think we herbalists would add these in stage one. Then, if tier two is not enough, Weinstock and friends add low-dose naltrexone (LDN), which is a microdose of an opioid receptor antagonist that can have profound immunomodulating effects. Again, if that’s still not enough, they prescribe more intense immunomodulating drugs to stabilize or shut down mast cell activity, including a chemotherapeutic drug called hydroxyurea.

Obviously herbalists are not going to prescribe any medications, and we’ll instead prefer to use herbs and supplements. But I just wanted to mention this integrative approach because it’s clearly effective and I like that it’s tailored to each individual’s needs. So being in collaboration with a conventional healthcare provider that’s knowledgeable about histamine intolerance and MCAS would be a really good thing, though I know they’re all too rare.

How to Implement a Low Histamine Diet
So let’s talk now about our most important step in a holistic protocol: a low histamine diet. Histamine is present in any food containing proteins that have been fermented by bacteria which convert histidine to histamine. Sometimes we ferment foods and drinks on purpose, like with yogurt or tempeh or beer. Foods that are cured, smoked, or canned can also be very high in histamine. Sometimes histamine is produced accidentally though, like when food spoils or gets contaminated (usually during long transportation).

There is noting inherently wrong with fermented foods, and actually under normal circumstances, they’re really really good for us! Fermented foods can increase the diversity of our gut microbiome, help educate our immune systems, and encourage proper digestion. But for those of us who are histamine intolerant, unfortunately the histamines in fermented foods can be too much for us and lead to sx of histamine overload. So for a certain period of time people with HI need to avoid fermented foods while the root cause of the problem is addressed. But during this time period, it’s important to take a probiotic supplement that is high in bacterial species that don’t produce histamine, which I’ll talk about later.

In addition, to reducing histamine in the diet, some folks also experience negative symptoms from eating the other biogenic amines present in aged or fermented foods, specifically tyramine, putrescine, and cadaverine [17]. These other amines can cause similar symptoms, but are especially correlated with headaches and migraines [2,4]. For example, aged cheese and cured meat is high in histamine plus these other amines, so it’s pretty important to avoid those types of food.

In table 1 below is a list of high histamine foods to avoid [17]. You may see lists on the internet that give contradictory information in this regard, because many of them are not backed up by legit data. Remember to only trust information online that correctly cites its sources! Also, other lists online sometimes lump in foods that are not high in histamine but can cause mast cells to destabilize and release histamine. These so-called histamine-releasing foods and substances are listed in table 4 [17]. Be aware that there is not consensus on the idea of certain foods triggering histamine release, so you’ll need to assess this for yourself based on your own experience.

Here is a link to a PDF document that I’ve found to provide the most detailed and accurate list  foods to avoid and other foods to replace them with. You can try to memorize these lists, or you can remember how histamine builds up in foods and make inferences based on that logic. So that's:

• anything fermented or aged in the presence of bacteria
• anything left at room temperature for more than a few hours, or refrigerated for more than a day or so, including leftovers
• very ripened fruits like avocados and browning bananas
• fish in particular is prone to being high in histamine because fish are heavily colonized by histamine-producing bacteria, especially certain species like mackerel [1]. Therefore fish is ok to eat only if it’s extremely fresh (like eaten within a day of being caught) or is frozen immediately, which many commercial shipping vessels do now – they freeze it on the boat and keep it frozen all throughout its transport.
  • Canned fish is one of the foods highest in histamine. (One time I wrecked myself with canned mackerel when I wanted to test out if I actually was histamine intolerant or not. Oy!)

The Overflowing Pot Metaphor
It’s also very important to keep in mind that histamine exerts a cumulative effect in the body. This means that eating histaminic foods won’t have a negative effect on you until you reach a critical load, beyond which your body can’t break down. I like to think of this as a pot full of water. You can keep adding water to the pot little by little, But at some point just one more drop will cause a bunch of water to spill out of the pot. That’s what it’s like for histamine reactions. I can eat half an avocado, a bite or two of yogurt, and maybe a few left overs, but if I eat a cured meat stick on top of that, especially if I do this a couple days in a row, I’ll definitely get red, flushed, and itchy within a couple hours.

Another thing to mention is that depending on a few factors such as the speed of your gastric motility and your daily activities, you may experience a histamine response from a food within ten minutes or ten hours, or sometimes even a day or two later. Some conventional practitioners have a misconception that histamine intolerance only happens within 30 min of eating a high histamine food, but when we understand how histamines build up until they reach a critical threshold, we’ll understand why that’s an incomplete understanding.

Low Histamine Foods That Are Fine to Eat
It’s also important to pay attention not just to what we eat but how we eat and cook our foods. Because our goal is to minimize bacterial fermentation of foods, we need to emphasize eating fresh foods and staying away from aged and processed foods. It also means we need to change our food storage habits a little bit. Refrigerated leftovers should be eaten within 12 hours or less (depending on your level of sensitivity and the type of food), and it’s a good idea to freeze any foods at risk of spoiling, for example, raw or cooked meats and fish, fresh berries, and so on.  For example, before I became histamine intolerance I used to keep a pound of raw beef in the fridge and cook bits of it over a few days. But now I cook the whole pound at once, divide it into servings, and freeze the servings that I am not eating that day. Then if I plan to eat some meat the next day, I defrost a serving overnight in the fridge.

I also now cook foods in batches and freeze them, then defrost stuff in individual servings.
In general we may need to make smaller amounts of things so that we can keep it fresh, like I make my own salad dressing and I should really not make more than a cup at a time so that I can keep turning over the jar.

Below is a list of acceptable foods and substitutes for high histamine foods:

• Fresh unprocessed meats and fish. Always pay attention to packing dates and sell by dates. 
• Fresh-Frozen or cooked meat and fish.
• When the shells of fresh eggs are completely intact and unbleached, the inside remains protected from bacterial contamination! But once you break the shell, it’s vulnerable to building up histamine like other animal proteins. 
• Fresh dairy that has not been aged or fermented: milk, cream, butter, cream cheese, mozzarella, cottage cheese, soft goat cheese (chevre), etc. (be wary of dairy sensitivities)
• Whole grains (soaked overnight then cooked, but do not ferment; avoid long-fermented sourdough bread)
• All veggies fresh or frozen except spinach, eggplant, olives, and anything pickled or fermented. 
• Some mushrooms are high in histamines as well, depending on the species and the age. 
• Most cooked legumes, but avoid Fermented soy products like tempeh, miso, tamari, shoyu, and natto. Tofu is pretty safe. 
• Fruits except for those that are overly ripe, like browning bananas, avocados, and any fruits deemed mast cell destabilizers, like citrus fruits, papaya, strawberries, tomatoes, pineapple, raspberries, kiwi, and guava. (be aware that foods deemed mast cell destabilizers are pretty subjective so you might not find these to be consistently triggering)
• Coconut products and flaxseeds. Avoid other many other Nuts/seeds including tree nuts and peanuts.
• Low histamine vinegars include distilled white vinegar and apple cider vinegar.
• Herbal teas, fresh juices, unfermented beverages.

Because everyone is a little different you may find that some foods on the high histamine list don't trigger you, or that in small doses they’re fine. It’s a good idea in the beginning of using a low histamine diet to also remove other hard to digest and inflammatory foods. The most common of these are gluten, dairy, and sugar. There are many studies showing how each of these foods increases gut inflammation or triggers mast cell activation. Last week I taught a class on how to navigate multiple food sensitivities and how to use an elimination diet – you can access the recording of that on VCIH’s website here.

Herbal Medicine
In general, modern diets and lifestyles are deficient in the plant compounds we have coevolved with to maintain our health. These plant compounds include bioflavonoids, catechins, carotenoids, and so on. Most of us are deficient in these compounds due to our modern diets being too rich in processed foods and not including enough fresh whole veggies and fruits. Many times this is a socio-economic issue since capitalism makes it hard for us to access and afford whole, fresh foods, while it makes it too easy and cheap to get ahold of processed junk food.

So in addition to adding more whole vegetables and fruits to our diets, I want to talk about a few classes of herbs that will be particularly helpful with regard to histamine intolerance and mast cell activation.

• Anti-histamine: nettle, goldenrod, feverfew. All these are rich in quercetin, a bioflavonoid that stabilizes mast cells and has broad anti-inflammatory effects [20,21,22].
  • Nettle and goldenrod are excellent as teas, or can also be taken in tincture or capsules.
  • Quercetin is not easily absorbed in pill form (only about 1% absorption from pills) so it’s much better to get it in its whole plant form [3].
  • In terms of food, onions, especially red onions, are high in quercetin, as well as kale, blueberries, apples, and green tea.
• Anti-inflammatory: It’s not too much of an exaggeration to say that all medicinal herbs are anti-inflammatory, as well as most vegetables too. But there are a few herbs that are super potent at calming inflammation systemically though.
  • Many spices including turmeric, cinnamon, and ginger [22,23] have been shown to quench radical oxygen species and downregulate the production of inflammatory cytokines and prostaglandins. Just cook with these, or add to a spicy chai, or you can take capsules of them in whole form.
  • Curcuminoids extracted from turmeric are commonly available in supplement stores now, but this extract is not easy to absorb so it must be formulated with black pepper and eaten with fat. So it might be more effective to take it in whole form in food.
  • Baikal skullcap (Scutellaria baicalensis) is a Siberian cousin of American skullcap (Scutellaria lateriflora). It is a strong anti-inflammatory and considered energetically cold by some herbalists. It modulates the immune response to be less histaminic. This is best taken in tincture form.
• Immunomodulants & adaptogens:
  • Medicinal mushrooms like reishi and also medicinal/culinary mushrooms like shiitake and maitake, modulate the immune system by down-regulating the allergic aspects of the immune response. Reishi mushroom is especially helpful in mast cell disorders because it is also an adaptogen, which means that it helps us adapt to physical and psychological stress. This is important because many studies have shown that psychological stress (as well as exercise in some very sensitive people) can destabilize mast cells.
    • A typical dose of reishi is 1-2mL of the double extracted tincture twice per day. Decoction or capsules are also fine.
  • Other adaptogens like licorice or tulsi may also be effective in this regard. Licorice also exerts other effects because it is a demulcent and can help sooth gastrointestinal inflammation, even in its deglycyrrhizinated form (as DGL tablets). 
  • With medicinal mushrooms and licorice, just make sure there are no interactions with other immunomodulating drugs. 
  • Note: some high histamine foods/drugs lists have licorice/"liquorice" on them. In traditional herbal medicine, licorice has long been used to treat atopic issues like asthma and eczema, therefore it is my suspicion these lists are referring to licorice candy, not whole licorice root in herbal form. Also, who the heck knows where that suspicion came from because I haven't seen a source cited about it!
• Nervines: Nervines are gently aromatic herbs that sooth and calm the nervous system, and all of them are also anti-inflammatory. Nervines can be an important part of a plan to reduce mast cell activity because during physical and psychological stress, corticotrophin releasing hormone (CRH) triggers the adrenal glands to produce cortisol. Cortisol , which is our primary stress hormone, causes mast cells to release histamine and other inflammatory mediators [6, 19].
  • Studies have shown that those who experience neuropsyhciatric disorders related to chronic stress are very likely to also have MCAS [2,6], and that treating them with an anti-histamine protocol can resolve their psychiatric symptoms [2].
  • Psychological stress also has been shown to cause leaky gut [14, 19], which is often implicated in histamine disorders.
  • There are many many nervines including American skullcap, chamomile, tulsi (which is also an adaptogen), lemonbalm, passionflower, milky oats, and many other aromatic herbs. Tea is the best way to take nervines, but also using their essential oils in a diffusor can have relaxing and calming effects.
• Demulcents and gut-soothing herbs: Because there is a very strong link between mast cell disorders, histamine intolerance, and digestive problems like leaky gut and dybiosis, demulcents should probably be part of a healing protocol for all histamine issues. Demulcent herbs are those that contain complex carbohydrates that are slimy when soaked in water. They sooth the gut tissue, feed healthy gut microbes with prebiotic fibers, and also fluff up the stools a bit to improve transit.
  • These herbs include marshmallow root powder (soaked in cold water to make a gel), licorice root or DGL, plantain leaf, and even some foods like ground flaxseeds and oatmeal.
  • Meadowsweet leaf and flower is especially good for gut inflammation because it is both demulcent and contains methyl-salicylates which quench free radicals. But don’t use in people with salicylate sensitivities or aspirin allergies.
  • Teas of chamomile, calendula flowers, and any mints are also great for gut soothing and healing.
  • In general gut soothing herbs are best in tea form so that they can coat the intestines better.
  • I also want to mention that many types of seaweeds are demulcent, provide important micronutrients and prebiotic fibers, and research has shown that seaweed polysaccharides reduce allergic responses and help heal leaky gut [29].
• Bitters/alterative/ hepatics: Sometimes allergies and other histamine issues can be the result of a sluggish liver that is not doing a proper job metabolizing the compounds that enter our bodies. When not broken down properly, these compounds can cause inflammation and trigger an immune response. Plants that taste bitter stimulate the liver to work harder. So we can eat bitter vegetables like arugula, dandelion leaves, and radicchio to help out our livers, or we can take small doses of bitter herbs too.
  • Mild bitters include dandelion leaf and root, and burdock root, but for those with very sluggish livers (indicated by light colored stools and difficulty digesting fats) it would be better to take the stronger bitters like artichoke leaf, barberry root, or Gentian root. For strong bitters, take about 1mL of the tincture before meals.
  • Other herbs can help the liver process xenobiotics more effectively, including milk thistle seed and red clover.
  • Red clover is an alterative also, which means that it stimulates the lymphatic system and can help flush out toxins and other compounds that can build up in the body and cause skin eruptions like eczema. Also isoflavones like those contained in red clover and soybeans have been shown to improve the integrity of the intestinal barrier and reduce mast cell activity [22].
    

Above are just a few photos of the medicinal herbs I've mentioned. From top left to right & down we have: calendula flower, American skullcap, artichoke leaf, chamomile, lemon balm, meadowsweet, stinging nettles, reishi mushroom, and goldenrod.

Nutritional Supplements
Gut healing: because most of us with mast cell or histamine issues also have gut inflammation or leaky gut, I suggest taking supplements that help the gut heal and improve barrier integrity.

• L-glutamine is an amino acid that plays a critical role in the healing of gut tissue and helps tighten the junctures between intestinal cells, preventing leaky gut [24]. A typical dose is 5g per day, as powder or capsules but the powder tastes nasty.
• Gelatin and collagen are good sources of the basic building blocks of our connective tissues include the connective tissue of the digestive tract, and these have been shown to heal leaky gut [25]. Collagen is basically the same as gelatin except that it’s processed to be water soluble at room temperature and thus more expensive but does the same job. They’re basically tasteless and can be mixed into drinks and foods. Real homemade bone broth also contains a good amount of gelatin in it, which should form a thick layer on top of the cooled broth. Long-simmered bone broth at low temperatures will present a histamine risk, so it's cook to make bone broth at slightly hotter temps for only a few hours.
• Iron: iron deficiency anemia is common in digestive diseases where the intestinal villi have been damaged by inflammation, leading to poor nutrient absorption. If you’re one of these folks, it’s important to Get your iron checked regularly and also ferritin. Being anemic can have negative impacts on our immune system. The best way to get iron is from grass-fed and humanely raised red meat, but in terms of supplements the best form is chelated and/or buffered to prevent constipation.
• Several vitamins serve as co-factors for the production of DAO enzymes in the gut, which again help break down histamine. These include vitamin C, vit D3, and vit B6 [18].
  • Vitamin D3 – it’s very important to get your D levels checked regularly, especially if you have a chronic illness. Having sufficient Vit D is critically important for all aspects of immune function, and specifically they’ve been shown to stabilize mast cells [21] and control our regulatory T cells which calm immune responses [22]. Blood levels should be between 40 and 80 ng/dL. Dose vitamin D depending on your present blood level, absorption capacity, sun exposure (and seasonality), and skin tone. And vitamin D3 is a more absorbable form than D2. For those who are chronically ill and also for folks with darker skin living in northern climes, it’s generally a good idea to take 5,000 IU daily in winter. Less can be taken in summer or with higher light exposure. Some folks with poor digestive absorption may need more than 5000 IU daily, so judge this on a case by case basis.
• To address inflammation generally, I recommend taking a daily supplement of omega-3 fatty acids – either as fish oil that’s molecularly distilled and sustainably harvested, or as cold-pressed flaxseed oil. A typical dose is 1000-2000mg per day with food. You can also get omega 3 fatty acids from seafood, seaweed, leafy greens, and grassfed meat and dairy. Also be aware that eating omega-6 fatty acids from nuts, seeds and vegetable oils are considered inflammatory, so try to minimize omega 6s while maximizing omega 3s in the diet.
• DAO – you can indeed take supplements of DAO directly, though these may not be effective unless they’re enteric coated. Enzymes are very fragile and get easily broken down by stomach acid. Also, due to the poor regulation of the supplement market we can’t actually know that DAO is contained or active in what we buy unless there is a legit third party verification of the manufacturer. That said, it may be worth a try anyway! Sadly there is not yet a prescription available for DAO enzyme, though I wish there was!
• Also, although taking quercetin in food and herb form is more readily absorbed than in pill form, it wouldn’t hurt to take extra quercetin as well. A typical dose is 200-500mg twice a day.
• For those with significant digestive inflammation or dietary restrictions that have caused other nutrient deficiencies, it’s a good idea to work with a practitioner on this and to get lab work done. Other vitamin and nutrient supplements may be needed to treat these deficiencies.
• For those with poor digestive capacity, especially those who frequently have oily stools, taking enteric coated pancreatic enzymes can be helpful while the gut is healing... plus of course anyone with CF or pancreatic insufficiency.
  
  

Probiotics
Studies have shown that people with histamine intolerance and MCAS often have imbalances in the gut microbiome [7,11,15]. We tend to have too much Proteobacteria and not enough of the beneficial Bifidobacteria, and overall we have lower diversity in our gut ecosystems [15]. This in turn can create the conditions for developing leaky gut and reduced production of intestinal DAO [15]. For those without histamine intolerance I would recommend eating fermented foods like sauerkraut, yogurt, miso, etc. But we need to be a little more careful when choosing probiotic foods and supplements in our situations because some lactic-acid forming bacteria which we usually consider helpful can produce histamine, including some (but not all!) of the Lactobacillus strains that are commonly present in fermented foods and probiotic pills. Here are some strains shown to produce histamine: Lactobacillus hilgardii, Lactobacillus buchnerii, Lactobacillus curvatus, Oenococcus oeni [1], Lactobacillus reuteri, Lactobacillus casei, and Lactobacillus delbrueckii subsp. bulgaricus [15].

Most of the time this is not actually a problem, but for some super sensitive people they may notice they respond negatively to probiotics containing the above strains. In those cases, there is some clinical reports of people responding better to soil-based probiotics, though there has been very little research on this to date [26,27].

So for us, it may be a better idea to choose probitoics that are not histamine producing and are well-documented to be beneficial to the gut. These strains include Bifidobacterium bifidum [15], Lactobacillus rhamnosus GG, Lactobacilltus acidophilus, L. plantarum, Bifidobacterium infantis, E coli Nissle 1917, and Bifidobacterium animalis lactis BB-12 [14], and Bacteroides fragilis [28]. Because the supplement market is very loosely regulated, some probiotic supplements are totally useless, so here are some guidelines for how to choose a legit probiotic:

• Contain at least 10 different strains of bacteria (or strains proven to be beneficial for our specific health concerns)
• At least 10 billion bacteria (CFUs) per serving
• Guaranteed potency until a specific expiration date or until date of consumption, NOT “at time of manufacture”
• Encapsulated in a way that protects bacteria from stomach acid
• Refrigerated 100% or specifically formulated as shelf-stable
• Avoid triggering fillers like lactose
• Contains prebiotic fiber.

Other Suggestions
An immense number of studies over the last several decades have shown that growing up on a farm and interacting with non-human animals regularly, including cows, horses, goats, and even dogs, improves the diversity and health of the human gut microbiome. Plus interspecies affection is very good nourishment for the soul!

Growing your own food, digging in the garden, and being outdoors on a regular basis is also helpful as that exposes us to the beneficial soil based bacteria that help modulate our immune systems. Being less cleanly overall is actually good for our microbiomes, but especially with regards to exposure to animals and healthy soils. My rule of thumb is to stay hygienic when going into human environments like cities and hospitals (because harmful human to human pathogens thrive in these environments), but allowing for dirty hands in the garden and the forest; and extra snuggles with dogs, horses, goats, etc. Though, I know some of us, myself included, are immunosuppressed and need to be more careful with regards to microbial exposures, so be more careful in those cases (but still kiss dogs). 😙🐕

I hope this article is helpful. If you appreciate this info please please consider donating to me! I put an incalculable number of hours into this work and generally don't get well-paid for it. I'm disabled and very low income, so if you could support me I'd appreciate it! You can send me a donation via paypal here.

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[18] Hrubisko, M., Danis, R., Huorka, M., & Wawruch, M. (2021). Histamine intolerance—the more we know the less we know. A review. Nutrients, 13(7), 2228.
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[22] Uranga, J. A., Martínez, V., & Abalo, R. (2020). Mast Cell Regulation and Irritable Bowel Syndrome: Effects of Food Components with Potential Nutraceutical Use. Molecules, 25 (18), 4314.
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[29] Vo, T. S., Ngo, D. H., Kang, K. H., Jung, W. K., & Kim, S. K. (2015). The beneficial properties of marine polysaccharides in alleviation of allergic responses. Molecular nutrition & food research, 59(1), 129-138.
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I recently learned about a fantastic organization that I want all CFers in the U.S. to know about: CF Bridge of Hope. Their mission is to "to improve the health of individuals with cystic fibrosis, and extend the same treatments that are available in the United States to those who live in resource-limited areas of the world." CF Bridge fully funds a 10 day trip to the U.S. for the patient and parent to get all necessary tests and to learn about CF care. They then go home with 1 year of all the meds they need! CF Bridge currently serves 60 patients from Pakistan, Ecuador, Tunisia, Algeria, Columbia, Libya, etc.

I feel so privileged to live in a place where quality CF care and medications are accessible to me, but there are many CFers who live in places where this is not the case. For those of us in the Global North, I think it's very important to share resources and be in solidarity with others in the Global South without access to these life-saving treatments and medications.

You can mail unused medications to a U.S. address which will get the meds to CFers in need abroad. I'm doing that this week because I have some extra CF meds I won't be using and I don't want them to go to waste! You can also donate money. Visit https://www.cfbridgeofhope.org/ to learn more.

In June 2023, I had two bouts of massive hemoptysis (coughing up blood) that eventually led to an emergency double lung transplant on July 5. I didn't know until it happened to me that massive bleeding could lead to lung transplant, so I want to take some time to discuss it here.

The truth is, this is a scary story. I haven't wanted to share it with my readers because what happened to me was very, very unusual and probably won't happen to any of you. I don't like stoking fear in people who already have enough to be afraid of. However, I am usually of the opinion that knowing what the worst case scenario is can help us prepare and also feel less stressed in situations that are slightly less bad. So I’ll leave out most of the gory details here (which are honestly zombie movie worthy). In this article, I summarize what actually occurred, how I prepared for transplant, my experience receiving the transplant, and how I’m doing one year later.

The Event
Hemoptysis is a big fear for many CFers. As previously discussed in my first article on hemoptysis, bleeding in the lungs occurs when bronchiectasis (scarring of airways) weakens them to the extent that they break and the arteries that run alongside them bleed into the airways, causing us to cough up blood. Bronchiectasis happens with chronic inflammation and/or infection in the lungs. Most people who cough up blood only cough up sputum streaked with blood, or a teaspoon at a time of pure blood. Although this is scary enough, this is a small amount and not dangerous, however it's always a good idea to talk with your pulmonologist about it. When hemoptysis progresses to a volume of around a half cup or more, this is considered to be significant and probably needs intervention.

More than ten years ago I needed such an intervention: a pulmonary arteriole embolization. This is a procedure where under interventional radiology, a tube is guided up the femoral artery in the groin up the lungs, and microscopic pebbles are shot into specific pulmonary arterioles to block them up, hopefully preventing bleeding in that area of the lung. Back then, my intervention was successful and I didn't have any significant bleeding for years and years. When I was on Symdeko, then Trikafta, I had no bleeding at all.

So I found it very odd that I was having streaked mucus for a week in early June 2023. I had a cold about a month earlier that settled in my lungs, and I tried a round of keflex, then augmentin, to kick the low-grade infection. I was feeling mostly normal but a little tired. Nothing too weird. But the antibiotics didn't seem to help. Then one night when I laid down to go to bed, I felt that familiar bubbling feeling in my chest that told me I was about to cough up blood. I sighed and thought, “Well, here we go again.” But to my confusion, then horror, it didn't stop. Luckily my housemate was home and he drove me to the local ER immediately. David, what a lifesaver! (sorry I got blood all over your car though man, my bad). By the time I got to the ER the bleeding had stopped and I was ok. Shaken, but ok. I'd guess I coughed up at least two cups in total (four cups or 1 liter is potentially fatal, I was told).
 
What helped me a lot in the midst of this emergency was the advice my doctor gave me years ago: if you're having a massive bleed and you can tell which side is bleeding, lay on the side that's bleeding so that if that lung fills up, you still have air going to the other lung. I was stabilized (given inhaled tranexamic acid) and immediately transferred to the bigger regional hospital by ambulance.

At the hospital, I received an urgent pulmonary arteriole embolization the next day, and they believed they plugged up the spot that was bleeding (it's hard to tell for sure, but it's likely they got it). I stayed in the hospital for another ten days and got IV antibiotics, assuming the bleeding was due to a bacterial lung infection that we hadn't been treating aggressively enough. During my stay, my doc casually raised with me the issue of lung transplant. "There are two main reasons why some CF patients need lung transplants,” he said, “slow decline of lung function, and uncontrollable hemoptysis that doesn't respond to embolization. Not that you need it right now, but if this happens again or worse, and embolization doesn't work, we may need to think about it." I brushed it off and yearned to get home as soon as possible.

I was getting better and set to go home on IV antibiotics. But I was a little ambivalent because we didn't know for sure that a bacterial infection was the cause (my sputum cultures were completely negative of anything), and I was still coughing up teensy bits of bright red bloody mucus, which I thought should have disappeared by that time. In the early morning on the summer solstice, the day I was set to leave, I had another massive hemoptysis, except this time worse. Again, I won't give details, but it was extremely scary. A CT scan showed that this second bleed had not been from the spot that was embolized a few days earlier. The reason why it bled again is that if enough of the lung is embolized, the blood in that lung is redirected and the pressure builds up until it breaks through a weakened airway in a different place. It's like if you plug up a branch of a stream, the flow of the water builds up speed and pressure in the other open branches. This doesn't always happen (it didn't for my first embolization), and even if it does it's rarely as extreme as I experienced it. My doctor had never seen an example this bad before. I'm guessing that my lungs are just particularly predisposed to hemoptysis, and we had known for years that my lungs had over-grown vasculature (a response to low oxygenation from mucus plugging) which made them extra vulnerable to bleeds.

After this second massive bleed they did an emergency embolization, this time embolizing about 90% of my left lung, basically anywhere that there could be any possible risk of leakage. When I woke up a day later, I discussed with my sibling and my doctors what my options were. There were only two really: leave things the way they are and probably have another massive bleed and die from it; or take my chances with a lung transplant. Neither choice was going to be easy. Even then I needed to crack a few jokes to lighten the gloom of the situation I was in (I demanded my doc give me an “I Survived the Gnarliest Shit” award complete with sparkles and rainbow streamers). But that ICU conversation with my favorite CF doc (who is also a good friend) and my sibling was one that dredged my soul.

Most people who get a lung transplant have several months of testing, talks with family and friends, and education sessions from the transplant team. I had none of this. I had to make a decision within several hours whether or not to be medivac'ed to the transplant center in NYC the next day. Again, this was an extremely unusual case. The truth is that for years I thought I would refuse a transplant if I needed one. There were a lot of psychological factors influencing this, most especially years of chronic low-grade depression and self-worth issues that made me feel unworthy of all that effort. Also, there was some philosophical puritanism which I’ve largely dismantled, recognizing it as capitalist-colonial manipulation. Luckily I had done lots of work to get over these psychological problems by the time this emergency happened, but it still wasn't an easy decision. The temptation of taking a break from all this scary life-struggle stuff was very real at the time. I could write a whole essay just on that, but I'll spare you. Anyway, once I got on Trikafta in 2019, I was sure that I’d never have to have the transplant discussion again. I had responded very well to Trikafta, gaining about 10% lung capacity over a year. My health stabilized and I thought I could have lived like that easily for the rest of my life.
 
So what caused me to suddenly lose all the ground I had gained with Trikafta? What sabotaged my progress? I can’t say for sure, but there are at least three potential factors. First, as I mentioned, over many years my lungs had responded to oxygenation problems by growing way too many blood vessels, increasing my risk of bleeding. Not every CFer has this issue, you tend to go in that direction or not, and I was in the former category. So in theory my lungs could have developed a “ticking time bomb” (a weak vessel on the verge of collapse) before I ever got on Trikafta, and it was only a matter of time before the dam broke.
 
Secondly, in February 2020 I caught COVID-19 before most of us were aware of its existence and before governments in the U.S. were even testing for it. I thought it was just a very bad flu, but it tested negative for the flu and all other respiratory viruses on file, plus it had all the unusual symptoms associated with COVID-19. I caught the first and most deadly strain with the most long-COVID symptoms associated with it. It gave me pneumonia and I would have died if I was not hospitalized. I experienced about 9 months of long-COVID symptoms after that, including permanent partial hearing loss in the left ear, heart arrhythmias, PTSD, and more. There’s no doubt that my lungs were severely stressed by that experience, and I know that some elderly folks who caught COVID had to get lung transplants due to the damage it wrought (I met such a man in the NYU transplant department). Luckily I haven’t gotten COVID since—I’m still very wary of it, for obvious reasons, and I still mask in public indoor spaces and take serious hygiene precautions, even more so now that I am on immunosuppression drugs.
 
Thirdly, as I learned after the old lungs had been removed and biopsied, they discovered a “fungal ball” in the left lung that had bled. Fungal lung infections and hemoptysis are correlated. That doesn’t mean all bleeds are the result of fungal infections, but those with fungal lung infections (especially Aspergillus spp.) are more likely to have issues with bleeding. The problem is, fungal infections are very difficult to diagnose because fungus often doesn’t show up in cultures. About ten or more years ago I grew mold a couple times in my cultures and then it went away, or so we thought. The only way to really know it’s actively there is with bronchoscopy, and those suck and should not be performed on a whim. So basically, I was never diagnosed with a fungal infection, yet it’s pretty clear to me that I had one. I don’t blame my doctors for not catching it in time… it’s just one of those shitty things about fungal infections—they’re hard to diagnose and hard to treat. Right before last year’s bleeds happened I had moved a bale of moldy hay and sprinkled it on my garden. I’ll never know if that was connected to the bleed, but regardless I’m staying the heck away from moldy hay for the rest of my life!
 
Pre-transplantation
So there I was in the ICU after the catastrophic bleed, weighing the biggest decision of my life. After receiving wise and compassionate guidance from my sibling, Kenzie, about whether or not to move forward to transplantation, I decided to do it. I realized in that hospital bed that I was making a decision not just for myself but for the dozens of people that I love and am connected to. In essence, I realized that I am not an “individual”, but simply a node in a network, and so in that critical moment I was making a decision for a wide network of relations, human and non-human alike. I had to consider what they wanted and what was best for them, too. That swayed my decision towards transplantation.
 
The next day I was flown in a tiny airplane accompanied by two nurses to NYU Langone Lung Transplant Center in New York City. I hate planes, plus I was totally terrified of bleeding again, so I (easily) convinced them to let me take anxiety meds for that journey. It went fine. I spent the next two weeks in NYU Langone’s medical ICU recovering, getting pre-transplant tests and scans done, and having daily discussions with the transplant team. I can’t recommend them highly enough! Really, if you are on the east coast, I think you basically can’t get a better team than NYU Langone. I am a special case for many reasons, and they fit the bill for all of them. The whole process went almost as smoothly as it could have—strangely so, for there were many synchronicities and several unexpected turns in my favor. One of them was that this just so happened to be the very hospital where I had my FTM top surgery in seven years before! Another gift was that my transplant team was very queer-affirming and interested in my experience as a transgender person with CF (and now transplant). I can’t tell you how much that put me at ease in this extremely precarious point in my life. Also, I have extended family and friends within a few hours from NYC, which allowed them to visit me in the hospital so far from my home in Vermont. They helped me secure housing and the social support I needed post-transplant.
 
Those two weeks I spent in the NYU medical ICU recovering and preparing for potential transplantation were a strange and liminal time-space. I had recently lost a nearly-fatal amount of blood and had received a transfusion in Vermont. I was very weak and couldn’t stand, let alone walk, without help. I have never been that weak in my life. For that first week in the ICU everything was hard: it was even hard to look at screens, to speak, to wash my face, or to focus on any one thing. (Thank gods for audiobooks!) My left lung was essentially non-functional, and the right lung still had residual old blood to hack out, so I was pretty out of breath. I also was too afraid to sleep lying down (because that could trigger bleeding), so I sat up most of the day and night. I was afraid to be left alone for too long. But by the end of the second week, with the rehab and me eating as much beef as I possibly could (to build back the blood), I felt much stronger and was walking loops in the ICU. On occasion I even forgot that I had basically died less than a fortnight before. It’s nuts how quickly human beings can bounce back from intense physical trauma! I began to think: maybe I could live the rest of my life like this… I can still walk, I can think and read and write. Is this good enough? Maybe I don’t need the transplant. Then I remembered that I could bleed again at any moment. Every time I was wheeled to a test in another part of the hospital, a nurse accompanied me with a giant syringe of epinephrine and a rescue kit for massive bleeds. So I had to keep moving forward. Ironically, I was doing so well by the end of those two weeks that there was talk that I could be kicked out of the ICU. That would make the transplant listing a lot harder; plus I felt so much safer being monitored constantly, and I had nowhere to stay close to the hospital. Act sicker! they said. That’s not the first time I’ve heard that command! If you’re a CFer you’ve probably heard that one too. Social and medical services are often delivered contingent upon how sick you look. I’m very skilled at hiding my illness (been practicing my whole life), so I tried to remember to ham it up every time the charge nurse visited.
 
I will say that the hardest part of this whole process of pre-transplant was preparing a post-transplant plan for housing and home-care. I don’t have a life-partner (intentionally), which would have helped in this situation. My sibling Kenzie did a huge amount of work coordinating several months of home-care and housing located within two hours of NYU hospital once I was discharged. I needed at least three months of 24/7 caregiving post-transplant. We figured out a complicated schedule of 2-week shifts filled in from family/friends from all over the country. There were a lot of unknowns in this whole process, including that we didn’t know how well I’d respond to the surgery nor when I would be discharged post-transplant. I might go home in three months or six months (or longer if things went bad), we didn’t know. Figuring out these logistics was the main barrier to me getting listed for lungs. Given that Kenzie was a few hundred miles away juggling several jobs, two young children, and communications with all my friends and family (I was too exhausted to communicate with the outside world), they did a truly amazing job and endured an enormous amount of stress. We also had to raise money to cover living expenses while I was away from home (below I share my thoughts about how to do this properly… I made some mistakes which temporally cost me some disability benefits). All the docs raved about Kenzie being the best medical advocate anyone could ever ask for. I am so lucky! 💚 (BTW, check out their herbal practice here: Wild Faith Herbal Wellness).
 
Eventually we figured out a plan solid enough that we got the approval from the transplant team’s social worker. The next morning I was listed for lungs. The day after that was July 4th. I had just eaten dinner and was preparing to shuffle down the hall to look out the windows at the East River where the city’s fireworks display would be launched (literally just outside the building). A nurse popped her head in suddenly. “Guess what?” she exclaimed, her face bright with excitement. My heart did a somersault—I knew what she was going to say next. “You’ve got lungs! Surgery is tomorrow morning.” I laughed nervously and tried to hide the shaking in my hands. Transplantation didn’t feel like it would ever really happen until that moment. I was bombarded by waves of hope and anxiety both. Would I survive the surgery? What if the lungs are a bad match? After trying desperately to distract myself with logistical preparations, I gave up and went to go watch the fireworks exploding less than a block away. It felt like an auspicious send-off and a good omen.
 
Transplantation
The actual surgery took three days. It took so long because I had had pleurodesis in both lungs, which makes it harder to remove the old lungs and causes extra bleeding, requiring an extra day of keeping the chest open and packed to stop the bleeding. My primary surgeon, Dr. Stephanie Chang, was an absolute pro and had dealt with this issue before. I had complete trust in her, which is rare for me. From the moment I met her I knew that she was extremely skilled and perfectly capable of saving my life. And she was very pregnant! What a badass.
 
For a few days afterward it was a blur of pain and meds and tests and coming down from the anesthesia. This first stage of recovery was HARD. On a couple occasions we timed the pain meds wrong and I experienced the worst pain of my life (worse than pleurodesis if you can imagine). One of my docs had said that receiving a lung transplant is as physically intense as running a marathon, and I think that’s true to some extent. Luckily, I had been exercising a lot just before the bleeds occurred, so I was as physically fit as I could have been. However, I lost about twenty pounds of weight (including muscle) during my time bed-ridden pre- and post-surgery, and it was really hard to eat for several days after the surgery. Eventually things stabilized though and the pain reduced. Tacrolimus is an intense drug and I had some side effects from that (like headaches and visual auras) but that also stabilized. I regained some strength and by the end of my time in the surgical ICU, I was doing long laps around the ward again. My parents and a couple close family-friends visited me in the hospital. I made a rapid recovery and by July 20th I was cleared to move to a temporary stay in Brooklyn.
 
Then began the next phase of my recovery, close-ish to the hospital with frequent office visits. I hopped around to a few rentals and found a place in Connecticut near family for about two months. In August, I felt well enough to take a trip back home, but I didn’t tell anyone I was coming. I wanted to surprise all my friends—and I sure did! I even surprised Kenzie by showing up at a local queer craft festival I knew they’d be going to. That was the best surprise I’ve ever finagled! I hadn’t seen them in about two months.
 
Overall, I had recovered remarkably quickly, and by mid-October, I was cleared to go home earlier than expected and without home-care. Those first couple weeks sleeping in the bed where it all began were nerve-wracking. I wasn’t quite sure I was ready to be on my own again, but I live in a communal house with lots of people around so I felt physically safe if I needed help. But the psychological factor took some time to heal.
 
Lessons Learned
There are three pieces of advice I’d give people who are thinking about or preparing for lung transplantation. First, be as fit and healthy as you possibly can be going into it. That means eating well, exercising, maximizing sleep, and minimizing stress. In particular I believe weight lifting to be very important. Lifting weights, even small ones, can boost lung function and oxygenation, and prevent the kind of muscle loss that can occur when we’re unable to be as active as we once were. Lifting weights or doing weight-bearing exercise is more effective than cardio in this way. The stronger you are going in, the faster you can progress with post-transplant physical therapy and rehab, and the sooner you can go home. Gain as much weight as you can going into surgery because you will lose a lot of it.
 
Second, write or revise your advanced directive and choose your medical advocate/ proxy very carefully. Like today—do it today. Actually, everyone reading this post should do this right now, whether you’re sick or not. Accidents can happen at any time. The fact that I had a revised advanced directive on file at my hospital was an extremely smart move on my part. After the second bleed I was unconscious for over a day and couldn’t make medical decisions, so the hospital called my medical proxy to make those decisions (i.e. to get another embolization, stay on a respirator, rescue me if I bled again, etc.). I had wisely chosen Kenzie as my medical proxy, who read my advanced directive carefully and thought very hard about what decisions I would make for myself in that situation. Other family members might have wanted to be my proxy but they were unsuitable for multiple reasons. Kenzie defended their position and my wishes. It’s really important that your medical advocate/proxy knows what you want and is someone who is capable of honoring your wishes over their own personal desires for you, should they conflict. Be as clear as possible in that document to make their job easier. I’ve had an advanced directive on file at my hospital for over fifteen years, and the first several versions were a little puritanical and naïve (the older and more medically-experienced I became, the more I was willing to make temporary concessions towards use of life support—thank goodness!). It’s fine to revise and resubmit it as needed. I’ve revised mine several times, and revised it again right before I got my transplant.
 
Third, if you’re receiving SSI disability benefits, don’t use GoFundMe (or anything similar) for raising money! Not only does GoFundMe take a big chunk of the prize, but any money you receive as a gift which is used for food, housing, or anything else that SSI is supposed to pay for will reduce the amount you’re given in SSI. The money you raise through a GoFundMe campaign is considered “unearned income” and can push your income and assets over the limit allowed for SSI, Medicaid, and food stamps. For many disabled people with Medicaid as a secondary health insurance, it is received dependent upon you receiving SSI, so if you lose SSI you lose Medicaid. There’s a lot of technical details here that I recommend discussing with a CF/disability lawyer, especially Beth Sufian. LISTEN TO HER ADVICE and be very careful! The SSA is really hoping we will make a mistake so that they can kick us off disability. Ever since the Trump administration first began eroding social services, the SSA has been forced to find ways to revoke benefits from people for any reason they can. Don’t give them a reason. The money I made from the GoFundMe campaign triggered the SSA to give me a financial review only a couple weeks after the biggest surgery of my life. Like I needed that added stress during my acute recovery phase! Luckily, I was able to keep my benefits with a temporary penalty, but I was very worried there for several months. Be aware that there is A LOT of bad advice and wrong information on the internet about medical fundraising related to SSA benefits, including that published by the SSA and GoFundMe! However, the bottom part of this article has some accurate basic info. In general, I think the only person you can really trust on this topic is a disability lawyer with a lot of experience in this area. Also, be sure to keep track of expenses and receipts during the recovery time, because that could help apply for grants or reimbursements.
 
Instead of GoFundMe there are two good choices for raising funds. First, try to find a medical fundraising service that passes money through an organization without you ever actually holding the money. I can’t remember the names of these but a good CF social worker can help you find one. Be aware that due to the extraordinarily extractive, expensive, and inhumane nature of the capitalist private medical insurance system in the U.S., medical crowd-source fundraising has become a profitable industry. Choose your platform wisely—many companies are out to make a buck off of people in desperate situations. Also, if you apply for transplant grants (which you should) see if they can pay for your expenses directly rather than giving you the money. And if you’re on disability the SSA doesn’t want you to receive any funds that are to be used for the things the SSA gives you money for (i.e. rent and food). I used my grants to pay my friends to care-give for me. Double-check with a CF/disability lawyer on this topic—getting expert advice is critical here.
 
Secondly, if you are federally-designated as disabled and you meet the age criteria, then you can create a STABLE (a.k.a. ABLE) account, which is basically a SSA-approved savings account that allows you to accumulate more than the practically-medieval $2,000 resource limit imposed by the SSA. A STABLE account allows you to save somewhere around $17,000 per year (depending on the state) and use that money for approved expenses including food, rent, and education. This was a frickin’ life saver and I wish I had made a STABLE account years ago! Every state has a different way of administering it, so you can learn more here.
 
One-year Post-transplant
My recovery has been remarkably successful and fast, or so I’ve been told. I haven’t had any signs of rejection nor any real infections yet. There are a lot of factors that have played into this, including all the care and generosity that my family, friends, and community have shown me, and the fantastic medical care I’ve received, so I can’t take all the credit. I am very privileged. Also, I think my new lungs are an exceptionally good match for me, and I have many times given ritual thanks to the person who created them.
 
My current FEV1 is around 3.25 Liters, or 110% FEV1. Yes, you read that correctly. I have never had lung function this good in my life! Never. I am regaining the physical strength that I lost from the surgery and becoming active again. On the other hand, the transplant drugs are intense (especially tacrolimus) and my kidneys are not happy about them. I am constantly navigating electrolyte imbalances and kidney stress as a result. Once the tacrolimus dose drops at the one-year mark I am hoping that this will relieve my kidneys of this side effect.
 
Any Questions?
Although this is a long article there is a lot I’ve left out. If you have any questions about specific pieces of this journey that I haven’t mentioned, or want me to write about an aspect of my experience in greater depth, please let me know and I’ll perhaps write a second article about them. For example, I have some things to say about diet, herbs, and medications related to transplant, so I could write about that if people are interested. I also accepted Hepatitis-C positive lungs and had to treat it twice before the virus eventually went away for good, so I could explain that as well.
 
Lastly, I am still incurring expenses related to recovering from my transplant, so if you are able to donate anything I would greatly appreciate it, especially if you are a long-time reader of my website and appreciate the work I have done (mostly for free) to bring alternative health and herbal education to the CF community. Thank you!

Reducing dietary carbohydrates to resolve chronic low blood sugar may seem counter-intuitive, but for people with dysregulated insulin production or insulin resistance, low-carbohydrate diets like the ketogenic diet may be the most effective choice for preventing hypoglycemic attacks. I struggled with chronic reactive hypoglycemia (low blood sugar after meals) for years until I started the keto diet in 2020. This change has been transformative for me and many others struggling with unstable blood sugar. In this article, I explain the science of why post-meal hypoglycemia occurs, what steps I’ve taken to prevent it from happening, and how I’ve made a ketogenic diet a sustainable choice for myself. If you’ve struggle with hypoglycemia and blood sugar imbalances like me, the ketogenic diet could be a great solution for reclaiming your health.

What is Reactive Hypoglycemia?
Reactive hypoglycemia occurs when a person experiences an abnormally high peak in blood sugar after a carbohydrate-containing meal and a subsequent steep drop in blood sugar one to three hours later, without injecting insulin. This is sometimes called “postprandial” or “spontaneous” hypoglycemia. It’s a different kind of hypoglycemia than that caused by injecting too much insulin or using other blood-sugar-lowering medications (called “iatrogenic hypoglycemia”).
 
In reactive hypoglycemia, the body responds to a spike in blood sugar above normal levels (that is, above around 120 mg/dL) by over-producing insulin from the pancreas, or producing insulin too late. This causes a sudden drop below a healthy level one to three hours later. Hypoglycemia is generally defined as having less that 70 mg/dL of a sugar called glucose circulating in the blood, though symptoms can occur at levels higher or lower than this. A sudden crash in blood sugar can cause jitters, light-headedness, strong thirst or hunger, confusion, anxiety, weakness, sweating, and if severe enough, unconsciousness, coma, or death. Reactive hypoglycemia is a common occurrence in people with type 2 diabetes, cystic fibrosis-related diabetes, metabolic syndrome, insulin resistance, glucose intolerance, or generalized “hypoglycemia”. It rarely happens in type 1 diabetes, because in type 1 the endocrine pancreas is unable to produce any insulin at all. Unfortunately, reactive hypoglycemia is poorly studied or understood, and conventional treatment methods are often unsuccessful.
 
My Journey with Blood Sugar Dysregulation
For over fifteen years I’ve been struggling with reactive hypoglycemia, a complication of my genetic disease, cystic fibrosis. Over the years it had slowly worsened, especially after I was diagnosed with diabetes in 2013. In the beginning, I only experienced hypoglycemic crashes mid-morning, one or two hours after eating breakfast. I noticed that I was especially likely to crash if I ate sugary or high-carb breakfasts, so I gradually reduced the amount of carbohydrates I ate in the morning to prevent my blood glucose from spiking. Around 2017, I started a low-carbohydrate version of the Paleo diet, keeping daily carbohydrates under about 80g. This was effective for a while, but I was also pretty loosey-goosey with it and continued to experience both hyperglycemia and hypoglycemic attacks every few days.
 
Then, in early 2020, my reactive hypoglycemia became uncontrollable after a medication change. I was experiencing crashes daily, sometimes three or four times a day. These crashes could get critically low (as low as 30 mg/dL). I started using a continuous glucose monitor (CGM), but my blood sugar was so unstable that the CGM was not reading accurately, and so I had to finger-stick test with a glucometer around ten times per day. I especially worried about having a critical low (that is, below 55 mg/dL) while asleep… and never waking up. I literally feared for my life every day.

This whole situation gave me constant anxiety and insomnia. I dove deep into the scientific literature on the endocrine system and started experimenting. As a nutritionist and clinical herbalist, I used every tool I knew of to help me balance my blood sugar. Some of it helped a little, but none of it was enough to stop the crashes from happening. Worst of all, when I experienced a crash I would often over-correct with more carbs than I needed, which would set up the next crash a few hours later. It was a terrifying rollercoaster, and I couldn’t get off the ride.
 
In October of 2020, I was coming to my wits end. My doctors couldn’t help me. They’d just tell me to inject more insulin with meals, and then ignore me (or shrug) when I told them that would only make my crashes worse. It was at this moment that I finally decided to try what I considered to be the option of last resort: the ketogenic diet.
 
Two and a half years later, I’m still keto and my blood sugar is more stable than ever. My chronic anxiety is gone, I can sleep through the night without concern, and I can exercise without having to stop and eat half-way through. My hemoglobin A1c has also significantly improved, from its peak at 6.5% in 2013 down to 5.1% in January 2023. I no longer use insulin at all – my blood sugar is entirely controlled by diet and exercise. This last part is unique to my particular case, as my pancreas still produces its own insulin (however improperly). Some people with blood sugar imbalances or diabetes will need to use insulin or other medications for the rest of their lives, even if they use a keto diet, and that’s perfectly ok. The goal is not to be insulin- or medication-free – the goal is to have steady blood sugar so that we can stay safe, feel healthy, and get on with the rest of our lives.
 
What Causes Reactive Hypoglycemia?
Reactive hypoglycemia can be understood as a mismatch between the amount of insulin produced by the pancreas and the amount of glucose circulating in the blood. Insulin is a hormone that the pancreas produces to move glucose out of the blood and into the tissues, where it’s used as energy for cellular activity. Normally, when we eat, the body immediately detects how much carbohydrate we ingested and produces the exact right amount of insulin on-demand. The pancreas also produces a small amount of basal insulin throughout the day unassociated with meals.
 
For people with blood sugar disorders, several things can contribute to hypoglycemia. The pancreas might produce roughly the right amount of insulin, but the release might be delayed. A delay would mean that by the time the insulin begins to push the glucose out of the bloodstream, small amounts of basal insulin or physical activity might have reduced the blood sugar already, so that when the insulin kicks in, it overshoots the body’s need, eventually causing a drop below 70 mg/dL. In addition, the body may be unable to properly detect how much carbohydrate was just eaten, preventing the pancreas from judging the right amount of insulin to produce [1,2,3].
 
People with healthy endocrine systems might also experience occasional, non-critical hypoglycemia, but it is usually transient and self-correcting, even without food. The pancreatic hormone glucagon acts as a counter-balance to insulin, so if hypoglycemia does occur, the pancreas releases glucagon which raises the blood sugar back to healthy levels. In some people with blood sugar disorders, the pancreas does not produce glucagon properly. Failed release of glucagon occurs in reactive hypoglycemia, so the only way to correct it is to eat carbohydrates or inject exogenous glucagon.
 
There may be other causes to hypoglycemia unique to certain disorders or diseases including insulin resistance, pancreatic tumors, liver disease, and so on. The suitability of the ketogenic diet must be judged on a case by case basis according to one’s individual diagnoses and symptoms, ideally in consultation with a knowledgeable healthcare practitioner.
 
Why Choose Keto for Addressing Hypoglycemia?
The primary reason keto is a great choice for those of us with blood sugar imbalances is that by eating fewer carbohydrates we prevent spikes in blood sugar, minimize insulin secretion, and prevent post-meal crashes. Reducing insulin secretion helps us avoid an insulin overshoot and excessive drop in blood sugar.
 
By reducing carbohydrate intake to a total of around 20-60 grams per day (tailored to one’s individual needs) our tissues learn how to gain energy from ketones rather than glucose. Ketones are small molecules produced by the liver from the breakdown of fats. Ketones are normally produced during fasting and other times when dietary carbohydrates are unavailable. Ketosis is a physiological state in which the body produces and is fueled primarily by ketones. Nutritional ketosis is a natural adaptation which allows for metabolic flexibility when food sources shift or become scarce. In fact, ketones are the preferred fuel of the vital organs such as the kidneys, heart, and brain. Studies have shown that nutritional ketosis can improve many neurological conditions including epilepsy, Parkinson’s, migraines, Alzheimer’s
, and depression [4]. 
 
The transition to ketosis doesn’t happen overnight. The conversion can take weeks or months, depending on the individual’s physiology and how strictly they adhere to the diet. Not everyone needs to monitor their ketone levels with urine strips or a blood ketone meter, but for those of us with unstable blood sugar, it may be a good idea to do so. This can help us know if our diets are adequately producing enough ketones to keep the blood sugar steady. I aim for a blood ketone level of 1.0 to 2.0 mmol/L, though I don’t test every day.
 
Being in ketosis means that I can eat less frequently and am hungry less often, but I don’t usually skimp on calories. Even though I rarely have crashes anymore, I still keep a little tube of maple sugar cubes with me when I exercise, just in case. I’ve discovered that a half-cube (amounting to about 3g of sugar) is enough to rescue me from most hypoglycemic episodes. Sometimes, if I poorly time post-meal exercise, I can slide into a mild hypoglycemia which is easy to correct with a small amount of maple sugar.
 
Another benefit of ketosis is that it’s inherently anti-inflammatory [5]. Paired with a whole foods diet including low-carb vegetables, grass-fed and pasture-raised animal products, and small amounts of nuts, the keto diet is a great choice for reducing systemic inflammation, which in turn improves insulin resistance.
 

Getting Started
We’re using the ketogenic diet as a therapeutic medical intervention, therefore it’s important to approach it with caution and adequate planning. Do your research before starting (see resources listed below). Inform your medical practitioners you’ll be trying something new with your diet, and develop ways to track your progress and record what works and what doesn’t. I’ll be honest with you, the beginning can be a little tough, most especially because it requires some experimentation as you learn more about your body’s particular needs. There is no one-size-fits-all approach to going keto, but I can offer some tips based on my own mistakes and successes:

1. Don’t go cold turkey. For those of us with unstable blood sugar, we need to slowly retrain the pancreas to produce less insulin. Launching in too fast can result in steeper crashes. For several weeks after dropping my carb intake to 60g per day, my pancreas was still overproducing insulin daily. This was frustrating, but I persisted. It took about two months for the blood sugar to get steady enough that I felt safe to drop the carbs further. At this point my hypoglycemic crashes reduced from three per day to once every other day. Now, two and a half years later, if I keep strict to my carb limit of about 40-50g per day I get a mild hypoglycemia only once or twice every couple of weeks. Based on my experience, the safest first step is to drop carbs to about 75g per day. In two weeks consider reducing carbs by another 10g. In another two weeks drop an additional 10g, and so on until you find your body’s ideal carb limit. Base this limit on your symptoms and ketone production. For me, I get adequate ketone production, fiber intake, and blood sugar stability with 50g per day, though some days I allow up to 60g, mostly from additional vegetable fiber.
2. “Net carbs” is a marketing gimmick. The standard medical approach to using a ketogenic diet is to count total daily carbohydrates – fiber, sugars, starches, and all.
3. In the first several weeks, find a source of high-fiber “baseline” carbohydrate to provide a steady supply of glucose without spiking the blood sugar. For me that was “peas pudding”, or boiled split peas made into a mash. I always kept this in the fridge and ate 1-2 tablespoon of it every few hours in the beginning. Alternatives are small amounts of hummus, oatmeal (unsweetened – I like it with butter and salt), and unsweetened sunflower seed or nut butter. As my insulin secretion re-regulated, I reduced this baseline carb source and then eliminated it entirely.
4. Minimize or eliminate “cheat days”, especially at the beginning. For those of us with blood sugar instability, having a cheat day can be pretty risky. Remember that we’re re-training our body to shift to a different fuel source, so consistency is key. Several months after achieving more blood sugar stability, it may be ok to have 10-20g more carbs on occasion, but beware of making this a regular occurrence or the pancreas may return to its old habits.
5. Avoid carbs in the morning. This was one of the earliest and most important rules I learned, as reactive hypoglycemia occurs most easily after breakfast. Carbs absorb much quicker after a prolonged fast, leading to a spike in blood sugar. I’ve found it best to limit carbs to less than 10g at the first meal of the day – the lower the better. Instead, I choose a high-protein and high-fat breakfast.
6. Limit per-meal intake of carbs to a maximum of 20g. Per-meal limitations are just as important as daily total restrictions for maintaining steady blood sugar. Also, I make sure that my carbs consist mainly of fiber from vegetables or nuts/seeds. Getting our daily carb allotment mostly from simple sugars is not going to help balance our blood sugar very well.
7. Add medium chain triglycerides (a.k.a. MCT oil) from coconuts to your meals. Adding MCT oil to your diet can boost ketone production significantly, which can help speed up the transition to ketosis. This may be especially useful in the evening as we prepare for the overnight fast. If your budget doesn’t have room for MCT oil, regular coconut oil is nearly as effective.
8. We don’t need to buy fancy “keto-friendly” bars, snack foods, or expensive supplements. Now that keto has become a fashionable diet, it’s easy to get sucked into the consumerism around it. Packaged keto products are often expensive, wasteful, and have hidden ingredients that may throw off our blood sugar. The base of our diet should be whole foods, ideally grown and raised locally using environmentally-sustainable and humane methods.
9. Ensure adequate electrolyte intake. You may have heard of the phenomenon called “keto flu” some people experience at the beginning of a keto diet. Symptoms may include fatigue, muscle weakness, and generally feeling lousy. Many keto experts suggest this is the result of inadequate electrolyte intake. I never experienced this personally, perhaps because my diet transition was slow, but it may be a good idea to take a sugar-free electrolyte supplement daily for the first few weeks.
10. Take a short walk after eating a meal containing carbs. Because exercising muscle can suck up glucose from the blood without the need for insulin, exercise can be a very effective tool for preventing hyperglycemia after a meal. I recommend gentle exercise like walking. If the meal contains more than 20g of carbs, more rigorous exercise may be warranted. Exercise immediately after eating. I discovered that waiting even ten minutes could allow the blood sugar to rise enough that the pancreas detects it and produces insulin before I could cut off the peak through walking. Exercising after the pancreas has already produced a large bolus of insulin can risk steepening a post-meal drop in blood sugar.
11. Find the minimum effective rescue dose of carbs needed to correct a crash. It can feel scary to be hypo and that rush of adrenaline may encourage us to eat too many carbs to correct it. Overdosing on corrective carbs can lead to hyperglycemia and set up the next crash. So it may take a little experimentation to find the right dose for you. For me, most of the time it requires only 3g of a sugar source like maple sugar candy or honey (I avoid glucose tablets due to their artificial colors and flavors). On occasion I may need to double that dose. When I get hypo it’s almost always on a hike, so I make sure to rest for at least 5 min after dosing to let it sink into the blood stream faster. I test again about 10 min after dosing, and if I’m still not above at least 70 mg/dL, I dose again. I keep a small tube of rescue carbs with me at all times.
12. Eat plenty of fat. Remember that a keto diet is first and foremost a high-fat diet. The body uses fats to create ketones, allowing us to get our energy primarily from fat instead of carbs. Personally, I get about 60% of my daily calories from fat. We must also pay attention to the quality of our dietary fats. Grass-fed butter or ghee, unfiltered coconut oil, and extra virgin single-sourced olive oil are a few of the best choices. Avoid refined polyunsaturated oils like soybean, corn, canola, peanut, or generic “vegetable” oil. Similarly, margarine and transfats are highly inflammatory and contribute to cardiovascular disease. Cold-pressed flaxseed and sustainable fish oils are great choices to get in those anti-inflammatory omega-3 fatty acids. Grass-fed and pasture-raised meats, dairy, and eggs are excellent sources of healthy fats, as is sustainable wild-caught seafood.

 
Not ready yet to commit to keto?
For those not yet ready to commit to the keto diet, it may be good to spend some time doing research and practicing a few of the tips I outline above. In particular, I think tips number five, six, ten, and eleven are the most important for anyone wanting better blood sugar control. These steps will help even if you’re not following a strict low-carb diet. Experimenting with these steps first can help build the willpower needed to start and stick with a keto diet.
 
In addition, I recommend paying attention to your stress level. Both physical and psychological stress release cortisol, a stress hormone which contributes to insulin resistance and unstable blood sugar. Mindfulness, deep breathing, rest, and good sleep hygiene are very important for blood glucose regulation. Also consider cutting out sugar and experimenting with using a low-carb sweetener like whole-leaf stevia powder. Read up on the glycemic index and cut out refined carbs (like white flour) and other foods which spike blood sugar more quickly. Lastly, cinnamon bark (as powder, tincture, capsule, tea, or added to food) has been used for thousands of years to stabilize blood sugar, and studies have shown it to be effective at slowing the rate of carbohydrate absorption and improving insulin sensitivity.

 
I hope this article has been helpful for you to understand more about why reactive hypoglycemia happens and what steps you can take to address it. There are many great resources out there to learn more about ketosis and the keto diet. Here’s a video introduction to the ketogenic diet by Dr. Dominic D’Agostino. He runs a helpful website with lots of scientific information and tips on the keto diet, including an excellent list of books, apps, and other resources to get started. If you’re interested in the science of ketosis, here’s a short article on its basic metabolic pathways. I’ve found Thomas DeLauer’s Youtube channel to be a rich resource of practical guidance on ketosis and intermittent fasting. I also appreciate the research of Dr. Peter Attia, an expert on ketosis who runs a great blog and podcast on the science of ketosis and fasting.
 
There is much more to say on this topic, so if you’d like me to write about any  of the above topics in greater detail, please leave a comment below. If you have used a low-carb or ketogenic diet to balance your blood sugar, please tell us about your experiences and insights!
 
Thank you for reading. I wish you success in your healing journey.
 
 
 
References:
[1] Hicks, R., Marks, B. E., Oxman, R., & Moheet, A. (2021). Spontaneous and iatrogenic hypoglycemia in cystic fibrosis. Journal of Clinical & Translational Endocrinology, 26, 100267.
[2] Battezzati, A., Mari, A., Zazzeron, L., Alicandro, G., Claut, L., Battezzati, P. M., & Colombo, C. (2011). Identification of insulin secretory defects and insulin resistance during oral glucose tolerance test in a cohort of cystic fibrosis patients. European journal of endocrinology, 165(1), 69.
[3] Kandaswamy, L., Raghavan, R., & Pappachan, J. M. (2016). Spontaneous hypoglycemia: diagnostic evaluation and management. Endocrine, 53(1), 47-57.
[4] McDonald, T. J., & Cervenka, M. C. (2018). Ketogenic diets for adult neurological disorders. Neurotherapeutics, 15(4), 1018-1031.
[5] Pinto, A., Bonucci, A., Maggi, E., Corsi, M., & Businaro, R. (2018). Anti-oxidant and anti-inflammatory activity of ketogenic diet: new perspectives for neuroprotection in Alzheimer’s disease. Antioxidants, 7(5), 63.

In October 2020 I began a very successful experiment with the ketogenic diet to control my  reactive hypoglycemia. I wrote this post in April 2021 outlining the initial phases of this experiment. Since then, a lot has changed, so I wanted to give an update on how it's working for me now.

Even though I had been "keto" for a year and a half, I had been pretty loosey-goosey with my carb limits. As long as I stuck under 60g carbs/day I could see that I was producing a little bit of ketones (using a ketone meter) and this kept my glucose relatively stable. After a few months of keto, my A1c dropped dramatically from 6.2 down to 5.2. I'm holding steady now at around 5.3.

But because I was a little lax with my carbs, especially between the end of 2021 and the beginning of 2022, I would regularly get hypoglycemic crashes once every couple of weeks which I required a rescue remedy (a half of a cube of maple sugar). So recently I've gotten much more strict with my carb intake, and the results have been excellent. My ketones are in optimal range almost all the time, my energy and digestion is great, and my blood sugar is in better control than ever before.

Optimizing Ketosis
On a ketogenic diet we want to make sure we have enough fat in our diet from which to produce ketones, but the amount of fat we eat in excess of our needs for ketosis just leads to fat storage. I didn't understand this until recently.

One way to tell if we're eating too much fat while in ketosis is to check the blood ketones using a ketone meter. Ideally the ketones should be between 1.0 and 1.5 mmol/L if we're in adequate ketosis. If they're above that, like say in the 3.0 range, it could mean that we're producing plenty of  ketones but they're not getting used up in exercise! The point of ketones is for energy, but if you're not using that energy, they're just laying around and building up. High ketones is not a health concern as long as they're under 8.0 or so. Having a moderate ketone level while being physically active means that we're using up the ketones we produce, and this is great! In fact, if we have high or moderate ketones before a workout, and then drop down to 0.5-1 mmol/L afterward, you'll know it's working!

In the initial stages of transitioning to a ketogenic diet, or maintaining a steady state ketosis, it's probably a good idea to have the fats relatively high. For therapeutic ketosis where you want the ketones as high as possible for benefiting the brain (such as in epilepsy), a keto diet can get 70-80% of its calories from fat. For the rest of us who are not using it to treat a neurological condition, that percent is unnecessarily high. When my metabolism was slow, I think I was at about 70% calories from fat, which for me was too high. Now that I've increased my protein intake (which allows me to build muscle in the context of strength training) my fat intake is around 60% of daily calories, protein around 27%, carbs 13%. I now believe that once the body has successfully transitioned into ketogenic fat burning, it's a good idea to reduce fat intake slightly so that the body chooses to burn body fat instead of dietary fat (the fat from food). For those CFers (or anyone else) who don't want to lose weight, it'd be best to keep dietary fats high. But I'm no longer worried about weight loss as a CFer due to Trikafta, which has caused me to put on a bit of pudge.

Calories and Macronutrient Ratios
Caloric intake should depend on our level of exercise and our basal metabolic rate (the baseline calories burned just being awake and doing normal daily  activities). The BMR varies depending on multiple factors like hormone dominance, season/climate, diet, health status, and constitution type. You can calculate your basal metabolic rate using several calculators online. I like this one which is specific for ketogenic diets. For non-therapeutic ketogenic diets (i.e. those used for fitness and/or body recomposition) the macronutrient amounts or ratios should depend on our health goals. We don't need to pay attention to % of the calories from different macronutrients so much. By macronutrients I mean proteins, fats, and carbs. According to Ketogains, protein intake should be a goal (related to have much muscle you want to gain), carbs are a limit (which we should not exceed if we want to stay in ketosis), fat is a lever (with which we can control body weight). The amount of carbohydrate is somewhat fixed around 40g/day max total carbs (though I can be in ketosis eating 50g or less), but the protein and fat amount shifts depending on our needs. When it comes to calculating carb limit, use total carbs NOT net carbs. Total carbs is the scientific standard, while net carbs is largely used as a marketing gimmick by companies wanting to sell fancy keto snacks.

Foods to Eat on Keto Diet
There are many, many resources on how to start a keto diet, so I'm not going to write about that here. However, I want to say that I do not recommend packaged foods sold for the keto diet. This is just catering to the health fad and often has way more carbs than is logical. Plus, packaging is harmful to the environment, and whole foods are always healthiest. Whatever you decide to eat, please please please favor local, organic, and grass-fed/pasture-raised foods. I get my foods almost exclusively from my garden, farmer's market, or my farmer-friends. I also recommend following some version of a Paleo diet for extra health benefit. It is absolutely possible to be a junk-food-keto person, just like it's possible to be a junk-food-vegan (the most common kind). So make sure that your keto diet is rooted firmly in ancestral health principles such as the Paleolithic diet or Weston A. Price. Diets should focus on mimicking as closely as possible how our ancestors ate in pre-industrial societies, because these diets are the most nutritious and the least toxic. Eating foods produced locally and in season is always best for our health and the health of the environment, reducing the carbon emissions associated with food production, food shipping, and also benefiting local businesses and farmers.

And yes, it's possible to be keto on a budget! In fact, for the first month eating this strictly I saved a lot of money on food because I really didn't need to eat very much -- when properly implemented keto reduces appetite and at the same time favors nutrient dense foods of smaller volume compared to other diets. And just because the keto health fad tries to sell us ridiculously expensive and trendy products it doesn't mean that is needed! Remember, many of our hunter gatherer ancestors were in ketosis a good amount of the time, and they didn't have any packaged foods or supplements available to them! There are some supplements that I think are decent though, like grass fed collagen powder or MCT oil. These supplements are not necessary however, whole foods are enough.

Remember also that we're not just eating organic and local and pasture-raised for our own health benefit. In my opinion, the primary reason to do this is for the benefit of the natural environment. I think lots of people make the mistake of thinking that they should go organic primarily because it will make them healthier. Sure, it's a good idea to limit exposure to pesticides, hormones, genetically modified foods, and untested chemicals, but the organic movement is at its roots an attempt to limit the ecological devastation perpetuated by agribusiness and mainstream agriculture. Please don't forget this. It's not just about you or about humans generally. It's easy for us anthropocentric westerners to forget this.

Stable Blood Sugar
I firmly believe that there is nothing, NOTHING, more effective for blood sugar regulation than a ketogenic diet. While I'm not yet sure of the safety of ketosis in type 1 diabetes, I firmly believe it should be the first line of defense and treatment for type 2 diabetes, CF-related diabetes (as long ass it doesn't cause unwanted weight loss), metabolic syndrome, pre-diabetes, glucose intolerance, hypoglycemia, and other blood sugar disorders. The point is that by reducing the amount that our endocrine pancreas is stimulated to produce insulin (to deal with meal time carbohydrates) we prevent spikes and crashes in blood sugar (as I described happened to me regularly in my previous post), increase insulin our sensitivity, reduce dependence on pharmaceuticals, and prevent all the harmful effects of blood sugar dysregulation like cardiovascular disease, obesity, kidney damage, eye damage, diabetic ulcers, etc.

So in this more advanced stage of ketosis that I'm now in, my blood sugar is amazingly steady and I very rarely get hypoglycemic anymore. Sometimes I am slightly hypo in the morning when I wake up (in the 60s) but 2 grams of carbs in my dandelion morning tea can correct this. Plus, when we're in ketosis our bodies can do this crazy thing called gluconeogenesis. This means that we can produce glucose from protein, fat, or lactate without needing to eat carbs, and this can keep our blood sugar steady without triggering insulin production! Specifically, in a fastest state, if we produce lactate through exercise-induced lactic acid build up (when our muscle start to burn due to lifting weights, for instance) gluconeogenesis can convert that lactic acid into glucose! This explains how I can workout and actually raise my blood sugar about 10 points, but only if it's intense enough to "feel the burn". Moderate or low intensity exercise like walking will not do this--walking will normally drop my blood sugar.

In this new diet change, I also made note that breakfast is really important to have very low carb. Eating more than 10g carbs will send me into a crash within a couple of hours, and yet these breakfast carbs can only be from fiber. So, for example, my usual breakfast is two hard boiled eggs and two teaspoons of miso. The miso has 5-8g of carbs per two teaspoons, and much of it is fiber. Yet if I add vegetables to that (even kale!), I can push myself over the edge and get hypo in a little while. I am very sensitive in the mornings, so I only eat veggie carbs later in the day.

I have also noticed that while in deep ketosis, I can sometimes accidentally have a blood sugar spike (like if I eat too many carbs at a potluck), but I don't get the post-meal crashes that I did before! In these situations, the blood sugar naturally  comes back to balance in a timely fashion. This has never happened to me before! However, if I allow myself to eat too many carbs or let my blood sugar to rise above 130 mg/dL more than twice in a couple of days, my blood sugar will lose its steady state (probably due to a disruption in ketosis) and I'll begin to get cyclic crashes again. If you have volatile reactive glycemia like me, watch out for this! For you and me, our keto diet has to be very strict to prevent reactive hypoglycemia.

What I Eat Presently
My diet is constantly shifting as my caloric needs shift (since I'm now working out more and muscle gain increases caloric need), however, here is a daily snapshot of my diet right now. I offer this because when I've started out on a new diet, I find it helpful to see what others are doing in order to judge how hard it's going to be. This is not a hard diet to maintain once you get used to it. 

Breakfast (after workout): two hard-boiled eggs plus two teaspoons of miso. Sometimes I'll add a tablespoon of sunflower seed butter (unsweetened) and/or 2 oz. of deli meat.

Lunch: 4-5 oz. grassfed local ground beef with either a salad or a veggie stir fry (kale, mushrooms, zucchini, onion, garlic, other seasonal veggies from my garden, optional tofu, plus tamari and green curry paste), 1 tbsp of sunflower seed butter for dessert.

Snack: cucumber or pickle.

Dinner: Pea and hemp protein shake with MCT oil. Or I may eat at a community potluck favoring meat and veggies.

That's it. Pretty simple. I don't have a huge amount of variety in my diet but that's mostly because I'm not a very creative cook and my food budget is small. I don't miss my old diet though. I have zero food cravings on this diet, which is a great relief! My body is getting all the nutrients it needs and the keto diet controls hunger so that I'm rarely hungry and can go without food for many hours (as long as my ketones are high enough and blood sugar is stable).

Possible Side Effects
I strongly believe that the keto diet is the most effective treatment for reactive hypoglycemia and many types of diabetes. There are a few possible side effects I have experienced, however. One is that since going keto I have gotten many more kidney stones than before. After doing a lot of research on this topic, I've come to the conclusion that keto is not entirely to blame for this. Primarily cystic fibrosis is to blame, for we have the unfortunately luck of having excess excretion of calcium in our urine, and this may have to do with the faulty CFTR ion channel. Secondly, a keto diet is low in phytic acid because we eat little to no grains or legumes. Phytic acid is an anti-nutrient in these foods, and while we don't want too much of it in our diet, it is sometimes helpful in that it binds to dietary oxalates and calcium (the combo of oxalate and calcium from the diet lead to calcium-oxalate kidney stones). Thirdly, unless we're paying attention, it's very easy to eat too many veggies or nuts high in oxalic acid. Now I'm on a very low oxalate diet. Fourth, we must make sure to drink enough fluids, at least 70 oz. daily. Lastly, eating small amounts of dietary calcium can help bind with food oxalates, and taking potassium citrate supplements can help prevent stone formation.

I also suffer from gout (uric acid build up), but again, this is more the result of CF than keto, as I had gout before going keto. While gout can happen when we eat too much meat, I've found that it's more triggered by ingestion of fructose. As long as I have ZERO fructose in my diet (yes, this means I cannot eat any fruits) then I never get gout, no matter how much meat I eat. I also take a small dose of allopurinol (100mg) to take the edge off of the uric acid build up, but that will not help me prevent gout if I eat fructose. So if you get gout on a keto diet, I suggest limiting fructose to as close to zero as possible.

If anyone is interested in my research on both kidney stones and gout, please let me know and I'll write another post about it. In the mean time, check out this rich resource from Dr. Fred Coe. I am indebted to him for his amazing educational work, all presented for free!

I hope this was helpful to you and that if you're like me trying to stabilize your blood sugar, please consider the keto diet. If you have any questions, please post them in the comments. Be well!

Hey friends. I wanted to write quickly about something I've been making regularly as a better alternative to animal milk and commercially-made plant milks: homemade coconut milk. I've been animal-milk-free for about nine years, and have switch between different plant milk alternatives, mostly hemp milk. However, there are several issues with these commercially available alternative milks: sustainability (where and how is the plant material grown, the energy and water used for that growth and processing, the waste involved in the packaging, and so on); hidden ingredients; not enough fat (for a CFer); and price. The best solution I've found to all these is to make your own milk, specifically from canned coconut milk. Yes, there are sustainability problems for a person in a northern climate to use a milk made from a tropical plant grown thousands of miles away, and the fossil fuels that transport depends on. There's no denying that. So a better alternative would be something like sunflower seeds, which grow in my bioregion. However, that requires some infrastructure that I don't have. Using canned coconut milk is a quick and easy solution and solves the issue of waste from milk containers. In addition, this milk alternative is very high in fat, which is great for CFers and others who need more nutrition. So here I'll give directions how to make it in addition to the nutrition facts.

Ingredients

• 1 can of coconut milk (ideally organic)
• 1 Tbsp of lecithin (liquid or granular), ideally from sunflowers or eggs
• 1/3-1/2 tsp of stevia powder (raw powdered leaves, not processed. It must be GREEN, not white, which indicates it is processed)
• 1/2-1 tsp guar gum (or other kind of gum such as carrageenan or xanthum gum)
• Nearly 1/2 gallon of water (part of it warm/hot in order to melt the coconut fat)

Why I use these ingredients
Lecithin is an emulsifier, meaning that it helps break up fats and allow it to be suspended in water. This helps us digest fats better. Lecithin is contained naturally in many foods including eggs, nuts/seeds, soybeans, etc. Stevia is a plant native to Brazil and Paraguay. It is very sweet but has no sugar and therefore has no impact on my blood sugar (I am diabetic so I need to minimize carbohydrates). It is very easy to grow in most climates (including Vermont), so I've grown my own supply (I only needed two plants for about a year's supply, you only need a small amount of stevia). Guar gum enables suspension of the fat in water so that the coconut milk doesn't clump and float to the surface, which it will if there's no gum in the milk. It also thickens the milk to feel more creamy. You can adjust the amount of gum to suit your preference for thickness. If you wanted it to feel more like cream, add a little more (but a little goes a long way, so be careful it doesn't get too thick).

It gets nice and frothy after blending, so it's great to put right in tea.

The majority of us with cystic fibrosis or pancreatic insufficiency require pancreatic enzyme supplementation in order to digest our food. We need this because our pancreases may not produce enough pancreatic enzymes on our own due to a genetic mutation or other pancreatic malfunction. When this happens, the most common conventional intervention is prescription-strength digestive enzymes which are enteric coated. These work pretty well for the majority of us, but sometimes they don't work as well as they should for certain individuals. In this article I will explain what enteric-coated enzymes are, how they are designed to work,  possible reasons why enteric-coated enzymes may not work for certain individuals, and a few options to address this problem.

Enteric-coated Digestive Enzymes
Prescription-strength pancreatic enzymes are enteric-coated. This means that a certain ingredient coats the outside of the enzyme beads (not the capsule shells themselves) to prevent the enzyme from getting destroyed before entering the small intestine where it needs to be activated. This coating is usually a kind of phthalate. In normal circumstances, the highly acidic environment of the stomach will destroy any enzymes that pass through it. Enzymes should only be activated in the small intestine where a healthy pancreas would normally excrete its pancreatic enzymes. The enteric coating is designed to protect the enzyme in acidic environments and then allow the enzyme to activate once it has reached the alkaline environment of the small intestine.

The small intestine is more alkaline for a specific reason: the pancreas secretes sodium bicarbonate, which is alkaline (basic), when acidic contents (chyme) from the stomach enter the small intestine. Sodium bicarbonate release will only be stimulated upon the small intestine's exposure to acidic chyme. Therefore, if the stomach acid is too low and the chyme is not acidic enough, this may lead to the pancreas not releasing bicarbonate at the right time, thus the digestive enzymes will not be activated. Bicarbonate may not be released into the small intestine at the right time for other reasons which are poorly understood. If either of these problems is occurring, the person may also experience heartburn or GERD, or in severe cases the person may experience burning at the anus upon defecation (if the stool is too acidic as a result of inadequate bicarbonate). I've had clients with both of these issues.

The most common sign that the pancreas is not producing adequate bicarbonate is that enteric-coated pancreatic enzymes will not work very well. By that I mean a person may take these enzymes as prescribed but there may still be steatorrhea (seeing fat or oil in the stools), overall indigestion, malabsorption, and even weight loss. Conventional doctors and CF specialists most often attempt to solve this issue by prescribing proton-pump inhibitors (PPIs) alongside these enteric-coated enzymes to lower the acidity in the stomach in order to allow the enzymes to be activated in the small intestine. There are even certain brands of pancreatic enzymes that contain acid-lowering drugs inside them. However, acid-reducing drugs can have negative side effects as I discuss at length in my articles here and here and in my eBooks.

Alternative Options
If we are concerned about the negative side effects we might experience related to the use of PPIs and other acid-lowering drugs, what other options do we have? Firstly, it's important to address whether or not low stomach acid could be the cause of the issue. By boosting our stomach acid we may be able to alleviate acid reflux, improve our protein digestion, reduce indigestion, and trigger the pancreas to produce its own sodium bicarbonate at the right time. A few ways to boost the stomach acid are to drink 1 tbsp of apple cider vinegar with meals (mixed in a little water), take digestive bitters 5-15 minutes before meals, eat bitter greens before meal, take betaine HCL supplements, or eat acidic fruits like a sour apple or a lemon. I discuss how this works in my articles here and here.

However, if low stomach acid is not the only problem, there is another option as well: using digestive enzyme supplements which are not enteric-coated. This is considered blasphemy to many mainstream docs, as it is a common belief that any digestive enzyme without enteric-coating is completely ineffective as it will be immediately destroyed by the stomach acid. However, if the stomach acid is insufficient, the enzyme may not be destroyed! I have had numerous CF clients with steatorrhea (whose prescription enzymes did not work) use over-the-counter (OTC) non-enteric-coated enzymes with great results. However, I must say that if your stomach acid is normal, OTC enzymes are unlikely to work very well. Why should we attempt to use acid-lowering drugs (which have serious side effects) to activate the enteric coating when a more direct option may be using enzymes with no enteric coating? So far this method has worked for several of my clients with this issue.

Choosing the Right Enzyme
Like anything else available on the market, we must be very picky in choosing which alternative OTC enzyme to use. Not all enzymes available on the market are of equal value--some are absolutely worthless or not suitable for people with CF or pancreatic insufficiency. Therefore, I'd like to give a few guidelines for choosing the right OTC enzyme:

• It must be from a reputable company with high quality testing and third-party certified manufacturing practices.
• It must contain lipase (fat-digesting enzyme), protease (protein-digesting enzyme), and amylase (carbohydrate-digesting enzyme), and have high doses of lipase. Most OTC enzymes on the market do not have enough lipase in them, or have too much amylase and protease (thus a too-high ratio of protease and amylase to lipase).
• Must provide the right dose of lipase without giving too much protease or amylase. The ration of lipase to protease to amylase in prescription enzymes is approximately 1/2.5-3.5/ 3.5-4.25, depending on the brand. In contrast, some OTC enzymes have a ratio of 1/12.5/12.5 or higher, which is not suitable for people with CF.
• We calculate the correct dose of enzymes depending on our weight and the lipase content of the enzyme. (See below).
• Make this transition slowly. I cannot recommend you go off your prescription medication, and certainly not all at once. However we also don't want to take too many enzymes if you're taking both prescription enzymes and OTC ones. Therefore each individual will have to experiment what combination of medications is right for them. You may want to talk with your doctor about this. Be aware that many doctors will try to discourage patients from trying alternative options.
• Most prescription and OTC enzymes are pork-based. There are vegan/vegetarian brands on the market, but they may not work as well.

These are brands of OTC non-enteric-coated enzymes available in the U.S. that I feel meet the necessary specifications above (I have no connections to these companies, these are brands my clients found themselves and used effectively):

1. Metagenics SpectraZyme Pan9x: contains 10,200 USP lipase, 67,500 USP protease, and 67,500 USP amylase per capsule.
2. Pure Encapsulation Pancreatic Enzyme Formula: contains 17,500 USP lipase, 110,000 USP protease, 120,000 USP amylase per capsule.

There are others on the market that may be not as good but still suitable. You may use the guidelines I have written above to find other suitable brands both in the U.S. and in other countries.

Dosing
Enzymes are dosed by the person's weight (in kg) and the amount of lipase contained in the enzyme. According to the CFF, there are several guidelines for enzyme dosing safety:

• Infants generally require 450-900 lipase units/g of fat in a meal, or 2,000-4,000 lipase units per 120 mL of formula or when breastfeeding.
• For humans 12 months to 4 years: standard lipase dose is 1,000 USP/kg/meal.
• For humans 4 years and older: lipase units 500-2,5000 USP/kg/meal
• Doses of more than 6,000 USP lipase/kg/meal is associated with fibrosing colonopathy, a serious intestinal blockage.
  

According to these guidelines you will need to calculate the total lipase daily dose contained in both the prescription enzymes and the OTC ones.

Also, unfortunately many brands do not use the USP units on their labels, which makes it harder to tell if it has the right dose. Here are some conversion rates:

• According to this PMC article:
  • for lipase, 1 FIP/PhEur unit = 1 USP unit;
  • for amylase, 1 FIP/PhEur unit = 4.15 USP units;
  • for protease, 1 FIP/PhEur unit = 62.5 USP units.
• According to this article from Enzyme Essentials:
  • for protease: 1 HUT = approx. 6.5 USP;
  • for amylase: 1 DU = approx. 48 USP;
  • for lipase: 1FIP = approx. 2.5 LU/FCCLU = 1 USP.
• According to this Medscape article:
  • for lipase: 1 IU = 3 USP.

Conclusion
I hope this helps you make an educated decision on whether to use alternative digestive enzymes and how to do it safely. Please share your experiences in the comments below.

Can I ask you a favor? I've been providing free education to the CF community and beyond for almost 9 years now, mostly as a labor of love. I make close to no money doing this, and I am a low income person. Would you be able to donate a few dollars to support my work? I would really appreciate it! You can donate at the button at the top right of this page, or you can donate monthly by becoming a member of my Patreon program. Thanks for your consideration!

Be well.


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Disclaimer: The content of this website and blog is for educational purposes only and should not be considered medical advice. The information provided here is not intended to replace medical care.

Why have gluten intolerances, food sensitivities, food allergies, and autoimmune diseases become so much more common in modern society? What are some natural, holistic ways to address these issues that can reduce the painful symptoms and heal the gut? In this article I discuss several factors in the development of gluten intolerance and food sensitivities, and offer a suggested protocol on how to address these problems and heal the gut with good nutrition, an elimination diet, herbal medicine, and probiotics to rebalance the gut microbiome and correct a leaky gut.

Food Sensitivities and the Human Microbiome
Food sensitives, celiac disease (an autoimmune disease triggered by gluten, the protein in wheat) and gluten intolerance have certainly skyrocketed in the last several years. How could this be? There are many factors of course, but the most important factor is the gradual degradation of the human gut microbiome as a result of modern diets and lifestyles. In the last decade a significant amount of research has been done in studying the human microbiome and how it has changed since the advent of modernity. Comparing the gut microbiomes of modernized humans in the U.S. or Europe compared to cultures living agricultural or hunter-gatherer lifestyles, our microbiomes have low diversity and are imbalanced to favor harmful bacteria and fungi as a result of unhealthy modern western diets. These diets include foods we are not evolved to eat including sugar, refined flours, industrial seed oils, junk foods, candy, meat and dairy from confined animal feeding operations. Not only that, but modernized people rarely have adequate exposure to the outdoors or farm animals, both of which help colonize our guts with beneficial bacteria and fungi.

The gut microbiome, or the ecosystem comprised of bacteria, yeasts, and viruses that live in our digestive tract, is responsible for an enormous amount of critical bodily functions. The gut microbiome is responsible for educating our immune system to learn what substances we ingest are harmful, and which ones are not. The good species are responsible for competing with and thinning out the populations of harmful species. The good species (called probiotics) help us digest our foods, reduce inflammation, produce hormones and neurotransmitters, and produce short chain fatty acids which direct feed our intestinal cells! We've evolved to need them for many of our most critical functions, and when they are not diverse or exist in the wrong ratios, we might develop digestive issues, allergies, autoimmunity, nutrient deficiencies, food sensitivities, and many other issues.

Leaky Gut Syndrome
Leaky gut syndrome is a common outcome of a long-standing microbiome imbalance, also called dysbiosis. Leaky gut is sometimes called "increased intestinal permeability" because the cells of the intestine separate as a result of inflammation. This separation of the intestinal cells is bad news, because it allows undigested food particles to pass into the blood, causing a systemic immune reaction, allergies, and many other symptoms. Eventually this can lead to the development of autoimmune diseases. Allergies and autoimmunity were essentially non-existent before the modern era because we used to eat traditional whole foods diets, had plenty of outdoor exposure, interacted with wild or farm animals, and did not use antibiotics or harmful chemicals. There are certainly benefits to living more hygienic lives and having access to antibiotics - much fewer of us now die from infections. But there are also drawbacks, as I have described. The goal is have a balanced approach to preserve a robust, diverse microbiome while also taking advantage of the healthier parts of the modern lifestyle.

What to do about it?
In my class on healing from gluten intolerance and food sensitives, I explain in detail how to address the above issues with a holistic dietary approach, especially an elimination diet. An elimination diet removes potential dietary triggers one by one in hopes of giving the gut a rest to heal. During this elimination, we also can take herbs to speed up the healing process and tighten up the gaps in between the cells of the intestines. In addition, we need to correct dysbiosis with either taking antimicrobial herbs, and/or taking probiotic supplements and fermented foods. Finally, when the symptoms are significantly reduced or under control, we can think about adding back in the old trigger foods one by one to see if we can tolerate them better now.

In my class I discuss step by step how to implement an elimination diet, how to avoid common pitfalls, how to choose a good probiotic, and what herbs to take to heal the gut.

Once eliminated, some foods we will never add back into a healthy diet, for these foods are not made for human consumption: refined sugars, industrial seed oils (canola oil, "vegetable oil"), conventionally raised meat or dairy, junk food, sodas, or candy. If we have celiac disease or severe gluten intolerance, we will never add glutenous grains back into our diets. That's fine really, grains are not necessary for good nutrition.

If you'd like to learn more about the process of healing from gluten intolerance and food sensitivities, you can purchase my 1.75 hr class on the subject here.

As a person struggling with CF-related diabetes, I've tried lots of things to balance my blood sugar over the years. It wasn't until 2020 when I discovered the ketogenic diet that my life really changed for the better and my blood sugar came under excellent control. Diet is the primary intervention for controlling most types of diabetes, but sometimes we may need medications and/or herbal medicines to assist with glucose control. 

I recently taught an in-depth class on holistic nutrition and herbal medicine for diabetes and blood sugar imbalances including CFRD, types I and II diabetes, metabolic syndrome, reactive hypoglycemia, and glucose intolerance (which you can check out here). I cover the topics of diet and herbs very comprehensively in that class, but in this article I'll mention briefly a few medicinal herbs that I have used and recommended to other diabetics to assist with blood sugar control. 

First, a disclaimer: the information here is not meant to replace medical advice from your medical provider. If you're using insulin or glucose-lowering drugs it is wise to consult a qualified herbalist or other healthcare practitioner to check on potential herb-drug interactions. 

Now that that's out of the way, let's talk about a few herbs. 

Stevia
Stevia is a plant native to Brazil and Paraguay that contains a glycoside of the diterpene steviol, which is 30-320 times sweeter than sugar. But because cannot be broken down by the human digestive system into glucose or other monosaccharides, it does not raise the blood sugar. It is my only sweetener and I add it to my morning tea every day. Studies have shown it to reduce blood sugar and provide antioxidant effects. The leaf is used and it's very easy to grow in your garden as an annual. One plant provided me with enough for a full year because the dose of leaf powder that I add to my tea is very small (about 1/8-1/3 tsp) because it's so powerfully sweet! I recommend only using the whole powdered leaf, not the extract, because the extracts sold on supermarket shelves ​are primarily erythritol, a sugar alcohol derived from corn. You can tell if the stevia powder if from the whole leaf if it is green in color. Fake stevia powder (erythritol) is white. You can get this powder from your local apothecary or Railyard Apothecary. When first starting to use stevia, start with a very small dose. When I first started to use it I thought the taste was similar to artificial sweetener, but eventually I got used to it. Too much can taste yucky. 

Bitter Melon
Bitter melon, Momordica charantia, is a melon used in traditional cuisines all over the world, especially in East Asian cooking. There are tons of studies showing it to be very effective at improving diabetes and blood sugar control. It's taste is very bitter (hence the name) and it works by inhibiting glucose absorption and promoting glucose utilization in the liver. Doesn’t seem to increase overall insulin levels produced by the pancreas though, which is important in the case of insulin resistance (because the more insulin we produce, the more resistant our cells become to it in the case of type II diabetes or metabolic syndrome). It contains an insulin-like polypeptide which can reduce blood sugar. It's not for use in pregnancy or children. Be careful if you're using metformin, because it may work similarly to metformin in improving insulin sensitivity. It may be used to replace metformin, but consult a practitioner on this to make the switch safely in order to prevent hypoglycemia. It may not be appropriate for people experiencing frequent hypoglycemia. Bitter melon would be most appropriate for people with type 2 diabetes, metabolic syndrome, or others with insulin resistance. Although you certainly can cook with it or drink the juice, the easiest way to ingest it is in capsules. The dose of the whole powder is 3-15g, starting with a low dose. The standardized extract in capsules is 100-200mg 3xday. If using juice the dose is 1-2 oz per day.

Gymnema
Gymnema sylvestre is from India and its common name means “the sugar destroyer”.
When the tincture (alcohol extract) is taken on the tongue it changes the taste buds that receive the sweet taste and deactivates them which makes sweet stuff taste really weird and a bit like cardboard. This may help us when trying to quit our sugar addictions. The effect on the tongue can last for several hours. There has been a lot of research on this herb and studies have shown that when taken in capsules it can improve fasting blood sugar, raise insulin levels, and lower A1c. Studies have shown it to be very effective for improving type 2 diabetes. Gymnema may be best to use for type 2 diabetics who are taking insulin, but be careful to adjust doses of medications in accordance with reduced need for them (consult a practitioner). The typical dose of capsules is 500mg twice a day before meals. The tincture dose is 1 mL, hold in the mouth for 30 seconds. It can help curb carbohydrate cravings.

Cinnamon
Cinnamon (Cinnamomum verum – true/Ceylon cinnamon) is safe for almost everyone people. Like other culinary spices it is anti-inflammatory and sensitizes us to insulin. It has mucilage which slows the rate of glucose absorption and also has been shown to inhibit enzymatic breakdown of carbohydrates into glucose. Cinnamon can be great to cook with and add to foods, tea, or coffee. I used to use cinnamon regularly with every carbohydrate-containing meal. Capsule dose is typically 500-1000 mg per meal/snack as needed. Start low and work up. Be extra careful if you're a person who experiences reactive hypoglycemia (though if used at the right times it may help prevent it). 

Flaxseeds
While the above herbs work primarily by improving insulin sensitivity, flaxseeds work to reduce blood sugar primarily by adding fiber and mucilage to meals which slows the rate of glucose absorption into the blood. They also provide anti-inflammatory omega-3 fatty acids (ALA) which can sensitize us to insulin by reducing systemic inflammation. Adding 1 tbsp of flax seed powder to liquidy meals like oatmeal or soups can lower their glycemic index. They have been show to lower blood triglycerides as well. 

There are many more herbs that can help us control our blood sugar, but these are just a few that are common enough and easy to get ahold of. If you want to learn about more medicinal herbs for diabetes including adaptogens and nervines, please purchase my two-hour comprehensive class here. 

Be well. :)

The sex hormone estrogen is implicated in hastening the progression of many chronic diseases. In particular, when compared to people with testes, menstruating people with ovaries are at higher risk of developing estrogen-dependent cancers[i], autoimmunity[ii][iii], and more rapid disease progression along with poorer prognosis in respiratory diseases such as asthma, chronic obstructive pulmonary disease (COPD), and cystic fibrosis[iv][v]. In different tissues estrogen has differing effects that include cell proliferation, immunomodulation, and stimulation of mucin secretion[vi][vii][viii]. Here I will briefly touch on what role estrogen is theorized to play in the pathogenesis of estrogen-dependent cancers and autoimmunity, but I will discuss in more depth the role that it plays in the disease progression of chronic respiratory diseases. Lastly, I will discuss the potential therapeutic effects of phytoestrogens on estrogen-related disease progression.