The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 42

51. What is the difference between mast cell activation syndrome and histamine intolerance?

Histamine intolerance is not widely accepted by the mainstream medical establishment. I haven’t been able to find much about it in the way of peer reviewed literature. That said, it doesn’t seem ridiculous to me. It feels plausible, I just haven’t seen convincing evidence of that yet.

Histamine intolerance is when a patient has symptoms from ingesting something that has a lot of histamine in it, that causes the body to release histamine, or that interferes with the body’s ability to break down histamine. In histamine intolerance, the problem is what is being put into your body rather your body itself. The problem is external, not internal.

Mast cell activation syndrome is when a patient’s mast cells are fundamentally dysfunctional. The problem is internal, not external. There is no evidence at this point that patients with MCAS can’t break down histamine normally with enough time, there’s just so much of it that it takes longer.

Many patients with MCAS (and other mast cell diseases) often have symptoms when they ingest something that has a lot of histamine in it or that causes the body to release histamine. There are two theoretical ways in which ingestion of histamine can cause symptoms: either the histamine released/ingested makes it way to other parts of the body and causes symptoms there directly; or, the histamine released/ingested makes mast cells release more histamine.

Regardless of exactly what is happening, patients with MCAS and histamine intolerance can have identical symptoms to ingesting a trigger. Importantly, MCAS patients may have histamine symptoms from lots of other things, not just ingesting something.

Histamine intolerance is much more commonly discussed in holistic and alternative medicine groups, which is definitely not where my expertise is. If you are aware of some recent data on histamine intolerance, or if I have made a mistake in this post, please let me know so that I can correct it.

The MastAttack 107: The Layperson’s Guide to Mast Cell Diseases, Part 17

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

25. How do I know what I will react to?
There is no way to definitively know what things will make you react. It is difficult to predict. There are some general guidelines many of us use to figure out what may be a problem but the only way to really know is to try something.
• Please note that because mast cell reactions are not known to be triggered by the same mechanisms as traditional allergies, you cannot exclude an entire class of drugs because you react to one in the way that you do for traditional allergies. This is particularly worth noting for opiates: reaction to morphine, for example, does not exclude fentanyl or hydromorphone.
• Mast cell reactions are not inherently triggered by IgE the way that “true” allergies are. This means that blood tests for IgE allergies will not identify triggers accurately for most mast cell patients. (Although some mast cell patients do have some IgE allergies.)
• Additionally, skin testing is wildly inaccurate in mast cell patients because of how reactive our skin is.
Stopping antihistamines is dangerous for mast cell patients.
Allergy testing is not accurate for mast cell patients.
• There are several ways that various things can cause mast cell reactions. Generally, they do it in one of the following ways: they cause mast cells to empty the chemicals in their pockets into the body (degranulation); they cause mast cells to release chemicals in another way; they already contain significant amounts of histamine; or the interfere with the mechanisms for controlling mast cell activation.
There are a number of medications that can cause mast cell degranulation or histamine release. Please note that not all of these medications are problematic for every patient. Only a provider managing your case can determine if these are safe for you or not. The major medications that may cause degranulation or histamine are listed below. This list is not exhaustive.

-Alcohol: Widely used to sterilize body area, surfaces, or tools; also used when preparing many medications that are not soluble in water
-Amphoterecin: Antifungal
-Aspirin: NSAID, for pain, inflammation, to block prostaglandins, to prevent clot formation
-Atracurium, mivacurium, rocuronium: Muscle relaxant
-Caine anesthetics (esters): Anesthetics, to numb
-Codeine, morphine, meperidine: Opiates, for pain or cough
-Colistin: Antibiotic
-Dextran: Volume expander, used in surgical or emergency situations to improve blood pressure
-Dextromethorphan: Cough suppressant
-Miconazole: Antifungal
-Nefopam: For pain
-NSAIDs (non steroidal anti-inflammatory drugs): For pain, inflammation, blocking production of prostaglandin
-Polymyxin B: Antibiotic
-Radioopaque contrast: To visualize structures in medical scanning procedures
-Reserpine: High blood pressure medication and antipsychotic
-Succinylcholine: Paralytic used for surgical procedures
-Thiopental: Anesthesia induction for surgical procedures
-Vancomycin (especially IV): Antibiotic

• There are a number of medications that are known to interfere with the mechanisms for controlling mast cell activation. Adrenaline is naturally made by the body to help control mast cell activation and other activities. When you interfere with the ability of adrenaline to act, it can potentially trigger mast cell activation. Drug classes that do this include beta blockers and alpha adrenergic blockers. This is particularly an issue if there is a history of anaphylaxis because these medications can interfere with Epipens.
Many foods either contain histamine or can trigger mast cell release of histamine. As with medication, you cannot exclude an entire family of foods because you react to one in the way that you do for traditional allergies.
• There are many lists of foods to avoid. They often conflict with each other. There is not yet a definitive list available. Despite this, there are some general rules of thumb that are agreed upon on what to avoid.
• Products that are fermented, contain alcohol, are overly ripe or leftover from previous days (especially meats), or contain dyes or preservatives are generally excluded.
• Beyond this, recommendations vary a lot more. Many diets recommend excluding yeast, citrus fruits, and nightshade vegetables.
Many activities inherently activate mast cells. Being too hot, standing or sitting in direct sunlight, exercise, sexual activities, menstruation, infection, and any type of physical trauma, even minor, can trigger mast cell activation as part of normal mast cell function.
Premedication is recommended for any medical procedure, even minor, as they can trigger mast cell activation.
• Patients may find that premedication prior to other activating activities is helpful for suppressing reactions.
Ultimately, the only way to know what is activating is through trial and error. Patients should consult their care team about what to trial, when, and how to make it as safe as possible.

For more detailed reading, please visit these posts:

Food allergy series: Mast cell reactions and the low histamine diet

The Provider Primer Series: Introduction to Mast Cells

The Provider Primer Series: Medications that impact degranulation and anaphylaxis

How to eat low histamine if you’re me

As requested, the details on how I eat low histamine.

The low histamine diet is confusing. There are several lists of which foods are high and which are not. Various sources cite different instructions for food preparation, storage, etc. There isn’t a lot of agreement on what is considered best practice for following a low histamine diet. I figured out what works for me by trial and error and that is what most people need to do. This is what my life looks like on a low histamine diet.

I started the low histamine diet January 1, 2014. I found a bunch of recipes online and spent three hours in Whole Foods trying to find everything. That first month was phenomenally expensive as I needed to get organic and/or low histamine versions of typical pantry products like oils, flours, spices, sugars and so on. The good news is that after that first month, my food bill has been much more manageable (though still more expensive than competing supermarkets like Stop and Shop).

I chose to follow the low histamine/low tyramine diet you can find on the Canadian Mastocytosis Society page. Foods that are canned or preserved are generally considered not to be low histamine as preservatives can be triggered and something bad is supposedly generating by the canning process (I’m unclear on what that is, but it seems possible to me). Vinegar is not allowed and I used many types of vinegar regularly, so that was a bummer. No wine or liquor for cooking because no fermented products and no alcohol. Several of the prepared sauces I used to cook Thai and Vietnamese food also contained verboten ingredients. When you start this diet, I strongly urge you to look at the labels of everything in your kitchen and discard anything that doesn’t qualify. Most sources recommend doing the diet for thirty days to determine efficacy and using one unapproved ingredient in that time period can really make it hard to tell if it’s helping.

Another big no-no is leftovers, but again there isn’t a real consensus. Not being able to cook meals for an entire week really threw a wrench into my schedule. I used to cook two meals on Sunday and eat the leftovers all week. As a microbiologist, I can verify that bacterial degradation of meat begins quite soon after it’s done cooking and this generates histamine as a side product. So no meat leftovers seemed like a good idea to me. I had to trial other types of leftovers to see what I tolerated.

I eventually got to a decent place with this diet where I was spending more time preparing than before but not a ridiculous amount. This is what that looks like.

I juice a lot. I started juicing this past winter. I am not particularly sensitive to taste so I just chop up a bunch of stuff ahead of time and throw it in. I juice one large mason jar of chopped veggies and one small mason jar of chopped fruit in the morning on weekdays. This gives me about a full 8 oz glass. I chop all the veggies at once and set up the mason jars in the fridge for the whole week. It takes about 45 minutes. Vegetables include carrots, parsnips, celery, celeriac, fennel, parsley, kale, arugula, cucumbers and beets. Beets give me energy, and this is apparently a well known phenomenon. I use ¼ beet per juice because more than that gives me cramps. Fruits include apples, pears, mango, star fruit, passion fruit, pomegranate, longan fruit, lychee, rambutan, and kiwis. I sometimes add ginger. I’m not very sensitive to taste, but if it tastes really bad, I just add a little pomegranate juice and it covers it. So that’s usually what I do for breakfast.

Other breakfasts include apples or pears with honey and peanut butter, scrambled eggs, hash browns or home fries (potato or sweet potato) with onion and black pepper, and Applegate chicken and apple or chicken and maple breakfast sausages.

If I forget to pack a lunch and have to go to work, I eat one of the following: apples and peanut butter, mozzarella with yeast free crackers, or multiple pieces of fruit. I can get these items at a nearby supermarket and they are safe fall backs for me.

If I have some time to prepare food, I usually bring with me one of the following: mashed potatoes with salt and butter, sweet potato casserole, saffron rice, mixed cooked vegetables, various versions of daal (lentil dishes, I usually also add chickpeas) and sometimes yeast free flat bread. I can prepare any of these meals and eat them for the following two days without a problem (so if I cook on Sunday, I can eat it Sunday, Monday and Tuesday). This is really helpful. I store them in mason jars and stick them in the fridge. Some people find it is better for them to freeze anything they don’t eat immediately and then thaw and eat it when they choose. I don’t do well with that.

For dinner, I generally have mashed potatoes and an Applegate chicken and apple sausage. I peel and dice two medium, yellow organic potatoes and add to small pot of boiling water. I then put the sausage in its own small pot of boiling water and both are done in about ten minutes. Quick and easy. Sometimes I use a little turnip instead of the second potato and whip it with butter and sage.

If I’m feeling more adventurous or have more time, I have some other dinner dishes. Saffron chicken and rice is really good. I buy organic meat and eat it the day I bought it. Any meat not eaten is either given to someone who can eat it or thrown away. This also includes anything cooked directly with meat, like the rice in the saffron chicken and rice.

Squash risotto is good. Squash lasagna is good. I eat a lot of squash. I make decent squash soups. There are many different types of squash so if you can eat squash, you can often get a lot of variety in taste and texture with squash. Sometimes I candy squash and beets and walnuts with brown sugar, salt and maple syrup. I can eat the risotto and lasagna for two days after cooking and I can successfully freeze and thaw the squash soup.

I strongly recommend making your own stock, both because it is much cheaper and also because it is much safer for mast cell patients who react to lots of foods. I boil down entire bones. I get bones from an organic food store or keep the bones from something I have cooked (like turkey or chicken). I soak the bones in cold water with the juice of one lemon for a few hours. While I’m doing that, I cook celery, carrots, onions and garlic in butter in a large pot. I add the bones and cold water to that pot. I add quartered onions, turnips and potatoes and whatever miscellaneous veggie odds and ends I have. I season it and add water until it’s about an inch from the top, then turn the heat down really low. Every couple of hours, I remove the debris that has floated to the top and stir the pot. I add more water as needed. I cook it for about twenty four hours, then pour it (with funnel) into mason jars and freeze immediately. This stock is really soothing on my GI tract when it has that burny type of pain.

For snacks, I usually eat peanut butter or potato chips. Plain potato chips are generally safe for me. I will sometimes indulge in chocolate or ice cream if I’m not pushing my luck already that day. I can eat most versions of Rice Krispies treats safely. I can eat cake if I make it (and the frosting) myself. I have some low histamine cookie recipes. I make my own low histamine hummus (I tolerate tahini okay, so sometimes I include it and sometimes I don’t) and will eat that with carrot and cucumber spears.

I really enjoy salads but my GI tract has a hard time with them so I am only recently eating them again. I make salads with lettuce or a green that’s not spinach, cucumbers, lots of chickpeas, black olives (safe for me) and a hummus based salad dressing. It’s pretty good. I pack the salads up in mason jars and the lettuce stays crunchy for a few days.

Eating low histamine can really be a royal pain in the ass because of how much work goes into food prep. However, if you can identify some quick items for when you’re really not feeling well or out of your house, it will seem a lot less stressful. Knowing that I can get a Rice Krispies treat at Starbucks to hold me over until I get home helps a lot. Finding out I can eat some Applegate products which can be prepared in a few minutes has made my life much less stressful. It is really difficult in the beginning because you have to check everything and cook everything from scratch, but once you get in a routine it’s not that bad.



Not a cure

On New Year’s Eve 2013, I drove to Whole Foods with my color coded list of organic, low histamine foods. I spent two hours finding unfamiliar products and reading labels. I spent $300 on six bags of food.

On New Year’s Day 2014, I cooked low histamine food with my newly purchased groceries. It was the beginning of an experiment. I was going to go low histamine for 30 days in the hopes that it would calm down my mast cell reactions, autoimmune diseases and persistently debilitating pain. I had carefully planned menus and food prep schedules for all of January.

By the end of the first week, I didn’t know if I hoped this diet would help or not. Eating low histamine when work out of the home is a royal pain in the ass. You can’t eat leftovers, so you have to cook every day. I found that since I wasn’t eating bread type products, the meals were less filling, so I had to eat more often. I spent a lot of time chopping vegetables and washing dishes. And it was expensive. Very expensive.

At the end of the thirty days, I was having fewer mast cell reactions. But my GI tract was really irritated from the additional mechanical stress of eating such high residue food. While my joint and muscle pain seemed better, my GI pain was worse. I had more energy and slept better, but the GI pain and poor motility was worse. A few weeks later, I got a PICC line in a last ditch attempt to keep my GI tract moving.

I continued to eat mostly low histamine. I drink a can of soda every day. I added back in some foods that are not low histamine but which I reliably tolerate, like potatoes and limes. I cheated sometimes. But most of the time, I stuck to the low histamine diet.

The concept of curing your disease with food is not new. Fad diets have been based around this concept for many years. I think I notice it more now because “curing yourself with nutrition” talk is abundant in the places I have to peruse to find low histamine recipes. I disagree with a lot of it. And to be honest, I think a good chunk of it is really damaging and hurtful.

I believe that it is possible to feel better by changing your diet. I think dietary and lifestyle changes are really important tools in managing chronic disease. But that is not the same as curing yourself. If you have mast cell disease and you eliminate your food triggers and see a huge reduction in symptoms, you still have mast cell disease. If you eliminate your food triggers and no longer have symptoms, you still have mast cell disease. If you stop adhering to the diet, your symptoms will return. You cannot cure mast cell disease with diet (or anything else, for that matter.) You cannot. There is no cure for mast cell disease. Or for many other chronic diseases.

An article popped up in my Newsfeed a few days ago about someone who “just decided I wouldn’t be sick anymore, so I healed myself.” Stuff like this is so hard for me to read. It implies that those of us who can’t just heal themselves are deficient in mental fortitude or discipline. It implies that these people who “cured themselves” are better than us in some way, that the rest of us aren’t trying hard enough to get better.

I decided a long time I didn’t want to be sick anymore. I have tried so many things to manage my symptoms. I have tried things I am embarrassed to admit I have tried. If it were possible to cure myself of mast cell disease (and autoimmune disease and Ehlers Danlos and so on), I would have done it by now. Instead of having a magnificent recovery through healthy eating, I need to surgically remove the pieces that are damaged beyond repair and cut my losses.

I have more severe food reactions now than I used to, possibly because I am no longer desensitized to them. After an initial period of fewer reactions, they returned with a vengeance, stronger and more frequent. It’s hard to whether the source of my reactions is more internal or external. But I know with certainty that the low histamine diet did not cure me. And I know it never will.



Food allergy series: Mast cell food reactions and the low histamine diet

When I started my posts on food allergies, I listed out the causes of food hypersensitivity. Notably absent from this list was mast cell disease. Even among detailed publications on mast cell disease, food reactions are often unmentioned (though potentially subsequent anaphylaxis is usually included.) Unfortunately, food reactions in mast cell disease are still not well understood. Even among experts, the nature and importance of food reactions in overall disease is the subject of much disagreement. Some contend that food reactions are a manifestation of general mast cell reactivity, while some think the foods specifically are sources of reactions. Following this logic, some experts believe in the validity of observing a low histamine diet while others do not.

So please keep in mind that the science behind the low histamine diet is not well accepted or even well defined. I’m going to give you my general comments on the low histamine diet, how I eat and how it has worked for me. It is my personal opinion.

A low histamine diet is one which eliminates or minimizes histamine in the food consumed. I have talked at great length about histamine so I’m not going to reiterate that here. What I will say is that exogenous histamine has been shown to induce mast cell degranulation, which means that histamine from an outside source can cause degranulation. It makes sense to me as a scientist that eating histamine rich foods will cause mast cell degranulation. It especially makes sense because the most commonly problematic food substances for mast cell patients, like alcohol, vinegar and aged cheeses, are major degranulators. I have never been able to tolerate alcohol, so it made sense to me that it was because of degranulation. Again, I prefer to lean on good studies, but in the absence of that, I will accept my own experience living in this body.

Last winter, I was in a lot of pain and generally having a sucky time of life. One of the changes I discussed with my doctors was the low histamine diet. It was in the “this can’t hurt” category. I had put off elimination dieting for a long time due to time and financial constraints, but it seemed like the appropriate time to do it had arrived.

One of the first things that became aware to me was that there is no universally agreed upon low histamine diet. There are lots of websites that discuss it and lay out diet guidelines and none of them are in complete agreement. So I just picked the one that seemed the most reasonable to me and went from there. As a mast cell patient, any diet you pick will require customization.

The diet I picked was the Histamine and Tyramine Restricted Diet by Janice Joneja. It can be found on the Mastocytosis Society Canada page.   I like this diet a lot. I do not know Dr. Joneja personally, but when I read diet/nutrition articles by her, I find them to be based in science. They meet my common sense rule. I’m going to summarize the general guidelines of the diet below along with my comments.

Key guidelines for a low histamine diet:

  • Anything fermented should be avoided. Fermentation produces histamine as a side product. Some are only sensitive to yeast fermented products while some find that fermentation from any organism is triggering.
  • No preservatives and no dyes.
  • No leftovers and nothing overly ripe. This is one of the harder parts of this diet, but I find it very important. Fresh or frozen products seem okay. I have mixed success with thawing frozen meat, but lots of people do it successfully. The key is to not cook something, put it in the fridge and eat it three days later.
  • No canned products.
  • No pickled products.

Milk and milk products: Avoid fermented products, like cheeses of all kinds, kefir, yogurt, sour cream, cottage cheese and cream cheese. A fair amount of milk products are allowed. Milk (cow, goat, coconut) is allowed, as are cheese type products that are made without fermentation (mascarpone, ricotta, panir.) Some versions of this diet allow mozzarella cheese and I find that it is safe for me. Ice cream is allowed if it doesn’t contain other disallowed ingredients. Cream products are okay, too.

Grains, breads: Yeast is the component most likely to be triggering in these products. Many people choose to restrict gluten due to their individual biologic reactions to it. Gluten is not specifically restricted on this diet, but I can tell you that it basically ends up being excluded anyway because gluten containing products usually also contain yeast. Pure, unbleached flour or grain of any kind is allowed. Products that use baking powder for leavening are allowed, like biscuits, soda bread, scones and muffins. Crackers without yeast are allowed, as are cereals if they don’t contain excluded ingredients, including artificial dyes or preservatives. I have a very difficult time finding low histamine baked products that are premade, so I generally make my own. It is surprisingly easy to make good tasting baked products with safe ingredients at home.

Vegetables: The list of vegetables that aren’t allowed feels really disjointed and counterintuitive. There is not much to do beyond committing it to memory. Not allowed: potato, avocado, green beans, eggplant, pumpkin, sauerkraut, spinach, sweet potato, tomato, any overly ripe vegetable. I personally can eat potato and sweet potato without any problem and do pretty much every day. Removing tomato was a revelation for me. It’s hard to live around because we use it for so much, but I really feel so much better. I will sometimes have a little for immediately get a stuffy nose and headache. All other vegetables are allowed. Any green that is NOT spinach is allowed. I eat a huge amount of squash, which is a really versatile ingredient. I get lots of different types from supermarkets or farmers’ markets and I make soups, purees, baked squash, squash lasagna, squash steaks, and a million other things. I can always tolerate it. This diet has also pushed me to get familiar with less common ingredients, like taro root, breadfruit and lotus root.

Fruits: Again, the list of fruits that aren’t allowed doesn’t provide any obvious unifying factor to quickly identify something as safe or not. Not allowed: citrus fruits, including lemon and lime; berries, including cranberries, blueberries, blackberries, gooseberries, loganberries, raspberries, strawberries; stone fruits, including apricots, cherries, nectarines, peaches, plums, prunes; bananas, grapes, currants, dates, papayas, pineapples, raisins. Allowed fruits: melons (keep in mind that some people may have an oral allergy syndrome reaction to melons), apple, pear, fig, kiwi, mango, passion fruit, rhubarb, starfruit (not safe for those with impaired kidney function), longans, lychees. I eat a lot of fruit, especially apples and mangoes.

Meat, fish and eggs: All shellfish are prohibited. They naturally have a huge amount of histamine. No processed meats (cold cuts.) Eggs are allowed if they are allowed. Raw egg white is a HUGE histamine liberator. Fish is allowed ONLY IF IT IS FRESHLY CAUGHT, GUTTED AND COOKED. There are differing opinions on what this means but several sources estimate it must be cooked in less than 30 minutes from catching. So unless you are or are married to a fisherman/woman, I think this is unlikely to happen. Any meat should be fresh or thawed from frozen. Leftover meat should not be consumed.

Legumes: Soy is the big culprit here because it’s in everything and is not allowed. Also not allowed: green peas, sugar or sweet peas, red beans and tofu. Everything else is allowed, including lima beans, chickpeas (I eat a ton of chickpeas), pinto beans, white beans, navy beans, black eyed peas, black beans, lentils (I also eat a ton of lentils), split peas, peanuts, and real peanut butter.

Nuts and seeds: All okay except for walnuts and pecans.

Oils: All okay except for oils that contain preservatives like BHA or BHT.

Spices: No anise, cinnamon, clove, curry, cayenne, nutmeg. Everything else is okay.

Sweeteners: No unpasteurized honey, chocolate, cocoa beans, cocoa. Most others are fine, including pasteurized honey, sugar (of really any kind), maple syrup, pure jams and jellies. This diet says plain, artificial sweeteners are okay. They are definitely not for me. One of the very first things I was told by mast cell specialist was not to use artificial sweeteners. So you can judge for yourself.

Drinks: A lot of drinks are restricted, including all teas. Most fruit juices and drinks have some type of unapproved ingredient. Milk, pure juices, water, mineral water and coffee are the allowed drinks. I also sometimes make “muddled” drinks where I crush some safe fruit with a mortar and pestle, make a simple syrup, and then put the muddled fruit in some soda water with some simple syrup.

Miscellaneous: Not allowed: Yeasts, yeast extract, all vinegars, flavored gelatin. Allowed: plain gelatin, cream of tartar, baking soda and baking powder.

The diet recommends a strict four week adherence to determine if it works. I think this is pretty accurate. I did it with no cheating for five weeks. It helped a lot. I slept better, I wasn’t swollen all the time and I was less nauseous. But there were some downsides. The first is that it is a royal pain in the ass if you work because you really have to cook every day. The restrictions on meat meant that I had meat about once every 2-3 weeks. Not everything freezes well so making a lot ahead of time isn’t always a good idea.

Finding recipes can be hard because the fact that they are labelled low histamine does not mean that they ARE low histamine. Please be very careful with that. I also find that some sources for low histamine recipes seem to assume a high level of economic freedom in food purchasing, as well as access to expensive and difficult to find ingredients. I can shop at Whole Foods, which has a knowledgeable staff and a good stock of ingredients for diets like these. There were several components I still cannot find. I also spent literally $1000 at Whole Foods for the five weeks when I initially did this diet.

One unexpected result of this diet was that it resensitized me to foods that I had become desensitized to. So foods that used to bother me a little now cause a severe reaction (sometimes anaphylactic, requiring epinephrine.) I understand that the reason for this is because these foods always caused reactions but I was effectively “used” to them so I didn’t notice. Regardless of the reason, my life is a lot more difficult foodwise than it used to be. I can “cheat” with some foods with medications but the reactions are still bad. I don’t always know how I feel about my choice to do the low histamine diet in my particular situation, but the fact is that since I did, I now am forced to observe a version of it, probably for life.

So that’s my run down on the low histamine diet.