Living With Histamine Disorders: Challenges … What the Hist? Part 3
The Importance of Variable Control
For people with histamine disorders, controlling reactions is a constant worry. One of the main difficulties of this is variable control.
A running theme throughout this series is applying scientific methods to your life to find your personal needs and intolerances. Controlling variables is one of the most basic parts of the scientific method.
In general, there are 4 major variables that affect your level of symptoms:
Diet
Environment
Stress
&
Medication
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Medication
Medication often has the potential to massively change your response to the first 3 variables which is why part 2 of this series addressed the many medication options for histamine disorders.
The goal of living with these illnesses should not be to avoid everything, and therefore I believe medical treatment is an essential tool given the large array of effective treatments.
However, many people with these disorders simply cannot control their symptoms with medications alone. Furthermore, medications may be inaccessible, expensive, or come with side effects. For these reasons, controlling the other variables is also an essential and massive challenge of living with these disorders.
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Food: Low Histamine Diet
The low histamine diet is a powerful tool for controlling symptoms. It should be understood that there is no such thing as a no histamine diet. This is what makes MCAS so dangerous. In its most aggressive form, no food is safe.
However, there are some very high histamine foods:
-MSG and glutimates (yeast extract is a common ingredient that contains high glutimates)
-Seaweed and seaweed extracts in particular the commin additive carageenen
-Leftovers and spoiled food (Food produces more histamine when it sits out, this can be slowed by freezing the food)
-Aged meat (Beef is most likely to be aged. High quality meats are actually more likely to be aged as it deepens flavor.)
-Fermented foods (cheese, pickled vegetabled, cured meats)
-Fermented sauces (soy sauce, fish sauce, miso, etc)
-Alchohol
-Tomatoes, Spinach, Eggplant, Strawberries and some other produce (lots of personal variation!)
For foodies like me, the trend here is high umami foods.
There are also some foods that lots of people have success with such as:
-Rice
-Pasta
-Carrots
-Broccoli
-Chicken
-Potatoes & Sweet Potatoes
-Apples
But these are only a small selection of the foods that you can experiment with. It is important to note that some foods like berries are low in histamine but high in salicylates. Some people with histamine disorders have no problem at all with salicylates others are very sensitive to it.
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The Challenge of Low Histamine Diets
Eating a low histamine diet can be a massive life disruption. The commonality of additives like glutimates and carageenen make shopping and eating processed foods of any kind difficult. The exclusion of fermented foods makes eating from asian restaurants extremely difficult as well. For those with comorbid illnesses like ME the need to cook all of our food at home is a massive challenge due to fatigue and can require a lot of caregiver hours.
Please remember that dietary restriction is only appropriate for patients who have a strong reason to suspect histamine disorders and that there is no evidence to support low histamine diet in anyone other than histamine disorder patients. In fact, many high-histamine foods (particularly fermented foods) are great for gut health. Patients with MECFS should not avoid histamine foods simply based on an ME diagnosis. See my post on how diet can not cure ME for more info.
Additionally, the stress of potentially reacting to any food can be extremely difficult mentally and lead to disordered thinking around food as well as more reactivity to food. This will be explored in part 4 of the series.
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Environment
In addition to controlling for food, people with histamine disorders also have to pay careful attention to their environment as many environmental triggers can also set off a histamine reaction.
Mold may require patients to move housing which can be a massive struggle for those with chronic illness.
Fragrances can be a massive obstacle to workplace safety and to finding nursing and caregiving staff as while low fragrance is a simple accommodation many people do not respect this and do not understand the severe danger not following these guidelines can have for people with histamine disorders (ie. Anaphylaxis)
Smoke is increasingly a challenge for those living in areas with wildfires as climate change exacerbates the frequency and severity of these events. Clearing a smoke-free safe area can require expensive air purifiers or patients may require a kn95 mask at all times. A Corsi-Rosenthal box is one affordable solution for air purification.
Finally, hygiene and skin care products often contain fragrance as well as other chemicals that may set off a reaction. The laundry list of ingredients on these products can make identifying the cause of a reaction extremely difficult.
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Natural Is Not Always Better
Unfortunately, there is a lot of overlap between HIT / MCS / MCAS blogs and non-scientific anti-chemical rhetoric. Many blogs will tell you that a product is better because it contains essential oils, not fragrance. That seaweed extract in skin products is a better alternative to "chemicals."
Everything in the world is made up of chemicals. Man-made chemicals are not innately more dangerous than natural ones. Cyanide is natural.
Do not assume that because a product is "natural" that it is safe. Likewise do not discount products that are completely lab-made, especially unscented products designed for sensitive skin.
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Medical Necessities
Many people with chemical sensitivities are chronically ill and require supplies for IV access, port-a-caths, feeding tubes and so on. It is important to consider your reactivity to medical anti-septics, dressings, and medications when trying to solve histamine issues.
For example, POTS and HIT often go together, but Propanolol a medication used to treat POTS is a histamine liberator while Ivabradine is not. It is important that you look up how your medications interact with histamine and mast cells and where possible avoid taking medication that increases histamine.
However, it is also important to remember that medication and sterile technique are life-saving necessities. Therefore, it is best to try to control histamine in other ways before you look at changing your medical treatments.
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Feeling Safe
Despite all this advice one of the most important things you need from your living situation is the feeling of safety. Living in an abusive situation or living with something you know or fear to be causing your symptoms will cause increased histamine reactivity due to stress.
It is for this reason I recommend not reading every article out there about "is the _____ in your home causing your chronic illness." A simple trial of living in a different space for a month can likely give you strong evidence for if your environment is the problem. If a temporary move does not change your symptoms you should be assured that it is unlikely your home is unsafe.
Only if temporarily moving does cause a significant improvement would I consider running extensive testing for mold, chemicals, and so on in your normal residence. Or if you are easily able, moving house.
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Practical Tips
For those living with histamine disorders here are a few of the practical tips I have found helpful in adjusting my lifestyle.
-Use butter and salt liberally when cooking plain foods.
-Use coconut aminos in place of soy sauce to cook Asian foods
-Use fresh herbs liberally (basil, sage, rosemary & scallions are some of my favorites)
-Mochi is a super low-ingredient desert
-Freeze food in single portions
-Buy "bases" from soap-making suppliers for minimal ingredient unscented products
-Wear disposable gloves and kn95 masks when you can't control your environment (I do so anytime support worker or nurse is around, it also prevents infection)
-If you are out with friends and looking for somewhere to eat consider a bakery as they often have very simple items. Also a good place for finding foods to treat yourself.
-The SIGHI list is the most extensive guide for looking up foods and additives (and doesn't just label anything artificial as toxic)
I will have a bonus post with a list of products I have found useful.
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Part 3: Challenges
MCAS, MCAD, MCS, HIT, chronic hives, asthma the world of mast cell activation and histamine intolerance is big and confusing. Mast Cell issues are a common commorbidity to Myalgic Encephalomyelitis or MECFS and related complex Chronic Illness. Yet the factual information about these diseases is often conflicting and difficult to decipher.
This post provides a brief overview of some of the many challenges faced by people with histamine disorders and mast cell diseases.
Living with intolerances and mast cell activation comes with both individual and societal challenges. On an individual level our need to restrict foods, environments, avoid infections, and constantly budget our energy and our histamine "bucket" and level of activation can be exhausting. On a societal level the lack of understanding around these conditions leaves us with little support.
Similar to the pacing necessary to prevent post-exertional malaise or PEM in MECFS, living with MCAS is similarly difficult to explain because there is not a single cause of our reactions but rather a whole list of activities, foods, and environmental conditions that wears down our defenses.
For this reason, pwME MCAS or intolerances are often seen as faking because we are constantly able to do things on some days that we are not on others. It is simply the nature of these illnesses that our tolerance changes, and we need our family and friends to understand that.
For example, someone may be able to tolerate the yeast in bread at a calm family dinner after spending the day resting. But the same bread could be way out of their tolerance on a hot summer picnic outside around pollen.
I urge friends and family of people with mast cell and histamine issues to educate yourself. No one wants to be the person with a million accommodations. No one wants to be the person whose dietary restrictions are constantly changing. We do not ask these things to inconvenience you, we do them so that we can hopefully still be a part of your lives.
