Mast Cell Disease

Hi!

Nice to meet another mast cell person here! I'm in the generic 'mast cell activation disorder/syndrom' category rather than mastocytosis, so that's where I'll be coming from. I was diagnosed 4 years ago.

I'll just add in a recipe or two first, so I actually answer the original question and don't forget once I start blathering on.

Cantaloupe smoothie
Ingredients:
2 -3 cups cubed cantaloupe, frozen (enough to fill on sandwich sized ziploc bag, with cubes about 1 1/2 - 2 inches wide. I used very ripe cantaloupe, but some can only tolerate less ripe ones.)
juice from one med. lemon
1-2 Tb. honey (optional)
enough water to grant right consistency, if needed.

What you do.
1. Put the frozen cantaloupe into a blender.
2. Add in the lemon juice.
3. Put the honey in a mug with about 1/2 cup of water or so and microwave until hot.
4. Pour honey-water mixture over frozen cantaloupe.
5. Blend on ice crusher setting at first, then whatever setting blends to your desired consistency. Add water at any point the mixture becomes too thick.

Variations:
1. Using fresh instead of frozen cantaloupe, blend up all ingredients. Put in a ziploc bag in the freezer and freeze. Either take out when half frozen, in 1-2 hours, and use as a slushie, or take out later when frozen and thaw partially before eating.

2. If you don't have anything frozen yet, use fresh cantaloupe, blend it a little, and then simply add some ice and keep blending.

3. Do this with watermelon instead of cantaloupe.

re: it being low histamine - On some lists, this is low in histamines already. In other lists, it's low histamine if you drop the lemon but keep the honey, as long as the honey is pasteurized. Based on yet other low-histamine diet lists, only the cantaloupe is safe. If the latter is what you have to eat, I'd use cantaloupe and perhaps make some apple concentrate yourself (juice an apple and boil the juice down until desired sweetness) and add that as the sweetener, if needed. A little water by itself could work in a pinch.


Low histamine, Gluten free falafel

Ingredients:
Dried chickpeas, soaked 8-24 hours (NOT cooked, not canned - these can elevate histamine levels). I use about 1 1/2 cups soaked chickpeas. Dried beans triple to quadruple in size, so you'd need to soak about 1/2 cup beans for this, just to be sure
1/2-1 1/2 cups, chopped fresh onion, yellow crookneck-type squash, zucchini, or eggplant
2-3 Tb. fresh herbs. I like parsley, but cilantro, oregano, sage, mint, or even epazote can work. Or dried chile. Chop coarsely.
sea salt to taste (I use 1 tsp. or less usually)
olive oil or animal fat. (cold pressed olive oil can sometimes have elevated histamine, so use with caution)

Equipment needed:
food processor. I've got a little 3 cup one. Blender might be able to do in a pinch, or a REALLY big mortar and pestle, but I don't know if the blending would need to be done in a different order with those.

Directions:
1. Drain the chickpeas and measure out the 1 1/2 cups. Don't use cooked beans or canned beans for these. The cooked/canned beans are too mushy and full of moisture - without any flour or starch, these falafel kind of melt into goo if the chickpeas aren't firm enough.

2. Put the chickpeas into the blender/food processor. Add sea salt. Add the chopped onion, squash, zucchini, or eggplant. If there is no onion, I like the yellow squash the best because it has a slightly sweet tastes that meshes well with this dish, IMO.

3. Grind these up in the food processor a bit, until it's like big, honkin' crumbs mixed in a thick paste. Now add the chopped herbs. I usually use only parsley, and if your food processor rocks, you don't need to pre-chop. Mine needs a bit of help. Also, more parsley is rarely a bad thing.

4. Start heating a skillet and add olive oil or animal fat until it's 1-2 inches deep with oil. Heat to about medium-low to medium.

5. In the food processor, process the chickpeas and other ingredients until they becomes a barely crumb-ish, mushy dough. The dough should actually turn somewhat green like the parsley. The crumbs should not be too big by the end, more like rough mush. If the pieces are small sized, the falafel has a wonderful, bready texture with a crispy coating after cooking. If the crumbs are a little too big, they will cook, but when they crisp up in the coating, they crisp up TOO much and it's too hard and unpleasant to try and eat.

6. The consistency of the dough often takes a little fiddling to get just right. Because there's no flour added, the moisture content has to be regulated by the chickpeas and the vegetable used. How wet the veggies are affects how much to use. If the dough is too dry, it needs more squash or eggplant. If it's too wet, it needs more soaked chickpeas. The dough should be firm enough to hold the shape of a small golf-ball sized patty, flattened slightly, in the palm of your hand. It will not be firm enough to hold that shape for much longer than it takes to carefully put it in the pan, though. Too firm and the falafel ends up too dry after cooking, though. This recipe does not work with cooked chickpeas, because they contain too much moisture and the dough ends up too soggy and won't hold together.

7. Test the heat of the oil with a tiny piece of the dough. Slip it in and set timer for 1 minute. If it cooks in 1 minute, the temp. is good. Now make the little golf-ball sized falafel patties, flatten slightly between your hands, and carefully put them into the oil. If you just drop them in, they will likely fall apart, but you can sort of slide/drop them in, close to the oil, and they'll hold together. Brown on one side - it should take 1-2 minutes - turn over and brown on the other side for the same amount of time. A patty's thickeness shouldn't be more than twice the depth of the oil, usually less, or the middle may not cook right. When done, scoop out finished falafel and cool on a non-sulfited paper towel, towel, or heck, bed of rice, even.

8. Serve with a dip of some kind or with roasted veggies. I usually wrap it in a lettuce leave plus other food items, like home-made hummus (raw chickpeas, salt, lemon juice, olive oil, optional other veggie or roasted veggie- blend in food processor, adjust ingredients to desired taste and texture), a tomato/cucumber/dill/lemon juice salad , chopped cucumber and lemon juice, or just a tomato-chile cooked salsa, or I've also made a more italian tomato-based dip to go with the eggplant based falafel, or roasted red bell pepper dips.

Don't know if either of these recipes will work for you, but I hope they might be something new you can tolerate, or at least inspire something new with the ingredients you CAN use. :-) I have others...just message me and I'll share what I've got. Would love to learn new recipes based on what you can eat, too!



And now, well...okay, I'm gonna assume that you may not have been able to research everything yet, as I am assuming the diagnosis is somewhat new due to the biopsies still needing to be done...so I'm just gonna dump a bunch of info. Apologies if you already know a lot of it!

So, first off, I'd ask about what foods you know you tolerate, what you don't? If you have had a chance to journal them yet and see?

Also, which low histamine diet list are you going by? (this had a good list of the most common ones, and I thought it had a good, brief commentary on why and how they are different: http://alisonvickery.com.au/histamine-intolerance-which-food-list-should-you-use/ )

One challenge is that foods are on the low histamine list for different reasons. Some of the foods are naturally higher in histamine by the time we get them, often due to aging (like beef). Some foods trigger a little bit of degranulation naturally (like alcohol - it's why folks sometimes get the red cheeks, you know?). Some foods contain substances that interfere with the breakdown of DAO (the enzyme that breaks down histamine).

So all of these CAN increase histamine levels, but for some folks, certain foods are more of a problem than others, depending on how they, personally, have problems with histamine, if that makes sense? Like, some of us start degranulating a LOT if it starts, so things like alcohol are a bigger issue, perhaps. And on top of that, because we can have different histamine levels on different days, sometimes we can tolerate more histamine in a food, and sometimes less.

Which means that for each of us, it's going to be a little different. The low histamine diet is a good guide to start from, but usually, you'll have some higher histamine foods you are fine with, and you'll find that some foods are only tolerated on 'good' days' while some may be good even on 'bad' reaction days.

And then of course there will be whatever OTHER foods you react to, as well, which I'm sure you've already run into, yeah? What have you figured out so far?

If it helps, here's some of the more common food types and substances that good chunk of us have had trouble with (based on discussions in support groups)
- gluten. A much higher percentage of MCAD folks are also either celiacs or gluten intolerant (probably at least 1/3 I see in the forums seem to be celiacs, and at least another 1/4-1/3 react to gluten). IF you still eat gluten, it might be worth getting tested for celiac disease (test is inaccurate if you are not eating gluten daily for 4-8 weeks before testing). If not, it might be worth seeing if gluten is an issue, if you don't already know.
- salicylates - a lot of MCAD folks seem to be salicylate sensitive. On the low histamine lists I mentioned above, one of them eliminates foods high in salicylates, too, so that might be of use.
- sulfites - many of us react to low enough levels of these that they don't have to even be labeled (ugh). But if you have trouble with wine, concentrated lime or lemon juice, or any foods that list sulfites ON the label, this might be an issue.
- sulfites, sulfates, sulfur, etc... - a higher percentage of people with MCAD seem to have trouble processing a lot of things with sulfur in them. Many I know have done testing and discovered they have a mutation that affects the enzymatic pathway breaking it down - they can still break down some, just not all, it seems. For these folks, sulfites are an issue, but also foods high in sulfur like onions and garlic can be problematic, and anything in the brassica family, too (like cauliflower, cabbage, mustard, etc...)
- night shade family - potatoes, tomatoes, eggplant

Okay, next thing - have you done a trigger journal yet? This was SO, SO helpful for me. Seriously, I feel like it saved my life! Message me if you haven't done it and would like to chat about it. It's basically just like a food journal but for all the triggers, but it's kind of insane, as you can imagine from all the crap we can react to, yeah?

Next thing - if your doc or research hasn't already given you this, the best description of histamine and how we react I have ever had was the following. Think of yourself as having a histamine bucket. The body releases histamine all the time, all day long, as part of many normal processes, so the bucket always has a little bit in there, sometimes more, sometimes less. But there is no allergic reaction until the bucket fills up and starts to spill over.

With us, we tend to have much more histamine in our bucket, so it takes a lot less to fill it up and spill over.

Some wacky things that the body uses histamine for: strong emotions, exercise, standing up from a supine position (basically, histamine is commonly used for anything that would elevate your heart rate). And one weird one that was REALLY helpful for me to know: mast cells release histamine as part of the process of digestion.

What this means for us is that sometimes, if you are having a bad, really reactive day, any of the above things that release histamine can cause a reaction, even if they do not, on a good day - because they may cause just enough elevation in histamine to overflow your bucket.

And that includes the ACT of eating food. The last one means that on a really bad day, food reactions (that you ingest) may actually not be TO the food, but to the act of eating them. So if you are going to eliminate a food, you want to make sure you have reacted on both good days and bad ones, if that makes sense?

And...I'm trying to think of anything that I eventually learned that would have been really helpful right at first you know?

Oh, yeah - because of the whole histamine bucket thing, figuring out your teeny, itty bitty triggers can be HUGE. As you've probably experienced, we can have just tons of triggers. Because of there are so many, even the tiny triggers can really add up during the day and make you constantly reactive. When I did my trigger journal and tracked down a lot of tiny, just barely there reactions and their triggers, and was able to eliminate them, it made SUCH a difference. Seriously huge - I did so much better, just from doing that alone!

Oh, and natural mast cell stabilizers!!
There are some bioflavonoids that are naturally mast cell stabilizing. The three I'm familiar with are luteolin, quercetin, and rutin. There are some foods that are higher in these that really help some of us tremendously (there are also some supplements, but a lot of us react to meds and supplements, so that's more of a crapshoot, really).

You can find some lists of high quercetin foods, foods high in luteolin, but some I know of that have helped me are olive leaves (you can make olive leaf tea, or there is even olive leaf extract, but it has alcohol so that can not work for some of us), guava leaves (guava leaf tea), and thyme (some folks buy fresh thyme in bulk and juice it, to take as a small drinking shot on a bad day).

I believe all three of these are higher in salicylates, however, so if that's an issue for you, these wouldn't be so great. For me, though, olive leaf tea alone has actually eliminated hives within a couple hours, if I keep chugging the stuff. It's pretty amazing.

Let's see...oh yeah - histamine release from mast cells is only one of many of the issues you're going to run into. Hopefully you have a great doctor who knows this and has informed you, but if not (and sadly most folks I know are in the 'if not' category),here it is. Mast cells have over 200 substances inside that have been identified, to date (if you count mast cells in every part of the body, because different ones can have different substances, aka mediators) - and each time you react, any of these, in any combination, can be released. And they all cause different reactions or symptoms, too.

We don't have quick tests you can take for most of them, and some of the effects may not be visible, or quantifiably testable in any easy way by the doctor. So most of the time doctors don't even bother and you are kind of stuck figuring out what symptom is from a mast cell reaction, and what could be from something else.

It is also the reason why eliminating triggers can be so vital, because antihistamine ONLY works on helping prevent bad reactions from histamine...it does nothing against the other 199+ mediators, you know?

And...I should probably shut up now that I've bombarded you, LOL.

Good luck, and congrats on getting the diagnosis. I hope it really helps you!