Testing

We dropped off my daughter's blood test today and we're doing a 24 hour urine test - the same one that diagnosed me with MCAD.

I'm so torn. I want to have answers, finally, to what is hurting my baby girl. But I don't want it to be THIS answer. I want a different one. I want an answer that has a super pill that will cure her pain, or a magic medical wand that can be waved and make it all better.

A crying day

Today is a crying day. I think everybody who ever has to deal with something chronic has them periodically, yes? You don't even have to BE crying to have one.

(source)

Because it's a day of coping with a loss, whether that's being reminded of what you can no longer do, where you can no longer go, what you can no longer eat, or who you no longer see. And those days can hit hard, sometimes.

Today? Today I am mourning the loss of rice pasta. So, yeah, most people would not view this as a thing that requires mourning, but for me, today, it does.

Research Frenzy ending

It's taken a little over a week, but I feel like I can catch my breath now. It's a shaky breath, but not a defeated one, I don't think. I have gone through my research frenzy for this MCAD thing, and I finally feel like I have enough of a handle to not feel completely swamped.

I know there is lots more to learn, but I feel like I have a little of the basics.

1. Drugs are not going to solve this.

Yes, this

How it feels to be diagnosed with MCAD after a celiac diagnosis:
http://wheniwentglutenfree.tumblr.com/post/57611329798/when-i-tack-on-another-food-intolerance-allergy

Sing it, sister.

What to do now that you're diagnosed with a Mast Cell Disorder

Order t-shirts.

Seriously.

Because if it's been, oh, about 7 days since you were diagnosed, and you're a bit of a research geek, you've learned some awful things, some scary things, some 'no, this part of it will not be getting better' things, and some things about your mast cell disorder that are TRULY bizarre. So right now, honey, you've got three choices: laugh, scream, or cry.

I know I'm going to cry later, when some of this really hits me, but right now? I'd rather laugh. So, here's some funny things to think about with this condition:

Low Histamine Recipes

I need these, like, today. This minute. Because it turns out stress and anxiety can SET OFF this MCAD  thing, and I'm stress enough about trying to figure it all out that I'm feeling worse right now than I have in weeks. Sigh.

This site looks like a good place to start, at least! Tons and tons of low histamine recipes, which it looks like I've gotta start eating, at least at first.
http://mastcellblog.wordpress.com/histaminerecipes/

At least I can still eat my falafel!

Seriously, this is my favorite meal

What it's like to have a systemic mast cell disorder

This paper, right here: http://www.mastocytosis.ca/MSC%20Patient%20Experience.pdf

"...Typically, mastocytosis patients [and related mast cell disorders] experience increasing limitations and greater suffering over their lifetime. If they push against their symptoms, believing that "trying harder" or pushing to complete tasks (laundry, grocery shopping, visiting a friend, cleaning), the symptoms become more severe and prolonged and continue to ricochet setting off other symptoms for days, weeks or months on end. There is no predictability to mastocytosis symptoms. There is no way to make the symptoms behave consistently or to be able to garner better control over them. The medical research community has not yet fully figured out mastocytosis. In the meantime, patients are driving the medical research via their physicians reporting the escalating symptoms and secondary and tertiary complications suffered by their patients. Everyone wants to have the answers, patients most of all.

Proof that it's not all in my head: Mast Cell Activation Disorder

It finally, FINALLY happened.

Two days ago I was diagnosed with a condition that explains EVERYTHING. Why I react to crazily small amounts of things, all the time, and have to take so much care or the whole world falls apart.  I have a somewhat rare condition known as Mast Cell Activation Disorder.

I went into the doctor's office not expecting much of anything. I'd received a call that the tests were negative, and then I'd made an appointment to see this doctor anyway, to discuss the results (she'd suggested such a thing at my first appointment). I was thinking I'd be asking about what new things she might suggest I could look into, if any. If she might have some possible idea of where I could go from here.

Instead, she told me I did not have one of the conditions she tested for, but I DID have the other.

International Bacon Day

I did not even know this was a thing, but it is. The saturday before Labor day, which this year is August 31.

(http://bacontoday.com/international-bacon-day-2013/ )

...I can't even eat bacon and I think it's awesome. :-D

Melon Smoothies

As it's the season for melons, we've been getting a lot of them at the store. However, as I think I've mentioned before, I dislike the mouth feel of melons intensely. The taste never really does it for me, either.

However, since I made that last cantaloupe smoothie, I've been experimenting, and I'm in love with the melon smoothie, wow. Just awesome.

Seriously, LOVE this.

Doctors and patients with chronic conditions

A lovely letter to patients with chronic conditions, written by a doctor. Does a nice job of discussing the patient experience while sharing some of the doctors' too.

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease

Cantaloupe smoothie - dairy free

OMG - I loved this so much!

Dairy free Cantaloupe smoothie

Can't even express the love for this

Why I'm a paranoid little SOB

I'm writing this mostly as a reminder to myself, about WHY I am as careful as I am. About WHY I need to listen to myself and not the people who think I'm paranoid because they don't have to deal with the consequences of my actions. Because seriously? It comes across that way.

Oil Cleansing Method

I have been using soapnuts liquid to wash my face and skin with, but I live in a desert and I have dry skin. The soapnuts cleans it, and doesn't strip the oil away, but it doesn't add any, either, and my skin simply never, well, glows.

That's what we all want, right? That glowy, lovely skin that...that I've never had, ever, so why I think I'll get it after 40 is a mystery. But I'll keep trying anyway!

Enter the 'oil cleansing method.'

Soapnuts 2

I've been using soapnuts liquid since November now. Here's the verdict so far.

Sunflowers

We usually think of sunflowers as good producers for seeds. However, sunflowers - if you are growing them - are nearly entirely edible.

Taco Soup

Before all my food issues popped up, there was a soup that I used to make that everybody in the family loved: Taco Soup. I got the recipe from a friend, although I'm not sure where she got it from, and it was so, so easy, and so tasty, that I loved this thing to bits and pieces.

Actually, I'll put the original recipes AND the altered recipe here, for anyone who can use it...although this is the original recipe + any alterations my memory has made over the course of time, but it's close.

Mini Italian-style Meatballs

Our new bentos have been working out great so far, and I've been doing more with small foods in order to add a little something fun to the bento. Originally, I wanted to try to make a sort of mini-meatloaf but ended up with mini-meatballs instead. I like them a bit sweet and spicy, and these did the trick. I'd add crushed chiles to really give them a kick next time, but with one child who isn't so fond of the spicy, that'll have to wait a few years.

Mini-meatballs in their mini-muffin tins

Carb Ideas for gluten or grain free diets

I always hope to find a grain we can use for our meals, especially now that we're trying to make bento lunches, but since we can't do that yet, we're going to be working on some substitutions for our carbohydrate needs. For a 600 mL bento, according to Justbento.com, there's usually around 1 cup of rice, which has 43 grams of carbs and is around 200 calories.

If we use potatoes, like we did in this bento:

our bento with potatoes rather than rice

Taco Seasoning Mixture

There was a soup that I used to make years ago called Taco Soup. I loved this stuff, but a major component of the mixture was the cheap and easy taco spice mix packet that you would add.

This one, actually

Yesterday, I figured that I'd try to recreate this spice mixture, and I think I came pretty close! Don't know why I never did it before.

Sources of Grain Free Carbs

If you are grain free and struggling to get enough carbs, I hope this might be of use. I've collected information from around the web on the carbohydrate levels of various foods and used that for some calculations that might make it easier to decide what to eat to get enough carbs.

Super tasty potato carbs!

Vegetarian Bento ideas

My hubby is a vegetarian, so when the kids stay with him, it's nice to find some vegetarian options they can enjoy. I've made this list from what we've come up with, but I'm hoping to add to it with ideas from the web, later on.

Falafel!  I love these things way too much!

Nutrition on a restricted diet

Getting my daughter to eat enough food to get the calories and nutrients she needs is actually pretty tough right now. She suffers from pain every time she eats anything, and the more she eats, the worse the pain, which she naturally tries to avoid. Every vitamin and supplement we've tried caused even more pain or gave her a reaction so we don't have reliable vitamins she can have, either.

The doctors still don't know what is causing this, so it continues. At this point, she eats in small amounts a lot of the time, she has almost no sensation of hunger unless she's hardly eaten during the day, and she has zero motivation to eat - as far as she's concerned - unless she gets something tangible out of it, like good taste.

Unfortunately, she doesn't think this type of food tastes good.

Bentos: trying something new...again

I recently found that that in Japan, there is a traditional ratio for what types of food to put into a bento: 4:2:1, or 4 parts rice, 2 parts protein, 1 part fruits, veggies or other ingredients. The neat thing about this is that if you use this ratio, the size of the bento box - in mL - is actually about how many calories you'll be filling the box with. Since we can't use grains, typically, our bentos have always been harder to fill with calories.

Which is why we're so happy to find some larger sized bentos: 1200mL! I wish they were not made of a plastic, but the wood or bamboo ones are 1) smaller and/or 2) a heck of a lot more expensive. We'll have to work our way up to those.

Pepper substitutions

Another substitution from my old buffalo blog! ^_^

Pepper Substitutions

Pasta Substitutions

Pasta is such an easy dish to make that it's always been kind of a bummer that myself and my daughter can no longer have it. For anyone else in the same boat, here's some ideas to substitute for your pasta dishes, posted from my 'dead' buffalo blog.

No-Sugar-Added Watermelon Candy

This is the easiest recipe in the whole world

One Ingredient Watermelon Candy (and yeah, the one ingredient is watermelon):

Roasted melon seeds

Winter squash are not the only gourds that have edible seeds. Many melons have them, too. You roast or pan fry these seeds and crack them open like sunflower seeds. In Egypt, watermelon seeds are a traditional snack food, actually!

So if you wish to try this snack out for yourself, here's how you do it.

Homemade, grain-free starches and flours

In the last few years, I've reacted to all processed starch that I've purchased. I know of other sulfite-sensitive folks who have said the same, as well as some super-sensitive celiacs, and some folks who have to be corn or grain free.

If you need a starch, however, and you can have either sweet potato or potato, there's a really easy way to make your own sweet potato or potato starch. This method leaves you with remainders from the process that you can turn into sweet potato flour or potato flour, too!

Five Side Dishes I

Just a few side dishes for when you're feeling in a rut and need some new ideas.

Citrus salt

This looks very interesting and tasty. Just a little something to add a bit of zing to a food.

http://www.101cookbooks.com/archives/citrus-salt-recipe.html

What we can eat

I was reminded recently that there are lots of lists of what allergic folks can't eat, but much fewer lists of what we CAN eat. Our own list of 'can't eat' is pretty extensive, for example.

My son is gluten free and dairy free and can only seem to tolerate limited quantities of eggs, GF grains, dyes and preservatives, non-organic fruits and veggies, and palm oil.

My daughter is gluten free, dairy free, soy free, egg free, onion and garlic free, and grain fee. She can only seem to tolerate fruit, dyes, and preservatives in limited amounts, and some fruits are no good at all.

Myself, I'm gluten free, dairy free, soy free, egg free, grain free, sugarcane free, coffee free, chicken free, and sulfite and high-in-sulfur-foods free. I have to limit my consumption of legumes, potatoes, and sweeteners, as well.

But what CAN we eat? Well, in the spirit of looking at the positive, here's a few foods on a 'can eat' list.

I can eat this, for example. Probably.

Things to consider on an elimination diet

There's a lot of sites out there which discuss how to do an elimination diet, from medical sites to forums to personal blogs. There's lots of different ideas on what to avoid, how to avoid it, and in what order you should try to eliminate foods.

I'm not going to talk about any of that. In my family, we dropped the 8 most common allergens and cooked from scratch for a while, and changed that on subsequent elimination diets, based on what we learned.

And that's what I'm going to talk about right now: what we learned. Because even if you can find a doctor who is willing to help you with an elimination diet, many times they seem to be, to put it bluntly, pretty ignorant about the REALITY of an elimination diet. Most doctors I've met don't seem to have the barest clue about what your every day experience is going to be like, or what the food industry has been adding to your food.

I hope that knowing a bit more about the process, from someone who has been in the trenches, so to speak, might be of use for anyone who is going through the process.

corn tortillas

I can't eat these anymore - maybe someday I can grow my own organic heirloom corn and make this work, but not at the moment.

However, coming from the southwest USA and having made these in the past, I had to put at least one post in here about how to make corn tortillas. They are SO good when made from scratch.

I never used a tortilla press and just made heavy, thick ones by patting them in my hands. I ended up liking those very much, even though they don't roll around food as well. They work great to use as the noodle portion of lasagna if you make a sort of 'Mexican Lasagna,' with chicken, tomatoes, and green chiles as the filling between tortilla layers. A green enchilada sauce goes very well with this, too. Not that I can eat most of that anymore, either, LOL.

This recipe below looks about like what I usually made. Almost no ingredients, just corn masa and water. We sometimes added salt, but that was about it! If you are eating corn, I would highly recommend corn masa over corn meal. It is processed in such a way that the nutrients from corn are more bio-available, so you get more of them.

http://www.101cookbooks.com/archives/000160.html

Enjoy!

Cupcake Grief

I came across this today, an old post that never went up, but which really brought the moment back. This was the day before my daughter's 14th birthday last year.

Cupcake Grief

Socca Pizza

Gluten free, Grain free, sulfite free pizza!  I am SOOOOO happy!

So, I've been making socca a lot lately, and finally decided to try it as a pizza crust. I baked the socca, made some homemade tomato sauce and spread that out over the top, and then cooked the toppings separately.

The first time the topping was ground bison - tasted great.
The second time it was ground bison and cooked red bell peppers - also great.
The third time it was ground bison plus roasted bell pepper sauce and ground up chiles from the yard - REALLY great. I think that blending up roasted red bell peppers and using that as a sauce would go well with this.

The kids got some mushrooms mixed up in their meat, too, and loved it.

The grin on my son's face when he got to hold up his 'pizza' and eat it - I was close to tears. It's so hard to express how much something like his means to us, just to find a food that we really like, that we can all eat, that we can MAKE. We were all grinning like loons.

So awesome.  I'll put up a more detailed recipe for this later, when we don't eat it so fast that it's completely gone before I even get out the camera for pictures, but for right now?

Socca bread + tomato sauce + toppings = awesome pizza dish.

Kale Chips

I just haven't made these in a while and kind of forgot about them. Wish I hadn't! They are SO easy to make, and the kids will eat them which is always a plus, just like the cauliflower.

A warning for the sulfite sensitive. If you react to anything in the brassica family, this may be problematic for you, so take care. I could eat it when I was reacting a bit less, so I hope that some day I may be able to eat it again. :-)

Roasted Cauliflower

I've been trying to find ways my children will eat more variety in their veggies - as this makes up a huge part of our diet - and finally found a way that they like cauliflower, yeaaa!

Roasted cauliflower. I used this recipe.

Basically, I chopped the cauliflower, roasted it around 400-425 with a little oil or melted animal fat and salt rubbed over them. The kids liked the smaller pieces that had more browned area the best. The bigger pieces didn't go over as well. I'd highly recommend this one!

It always feels great when you can find something the kids like to eat!

LOW HISTAMINE DIET - make this sucker as is. :-)

Socca - A French Flatbread

Socca is a completely grain free flatbread that comes from France. It's even a traditional grain-free flatbread, so no weird substitutions to alter the taste, woo hoo!

This stuff is SO easy to make, it's awesome. And it tastes good, too. My kids tell me it reminds them of the batter around a corn dog; I assume that's a positive review, heh.

Stevia Syrup

I can have stevia as long as I grow it myself, so imagine how excited I was to learn that you can make stevia syrup from the leaves!

This site shows how: http://lifehacker.com/5951453/diy-stevia-syrup

Stevia Syrup:

How to make your own chickpea flour

This is really easy. It takes a bit, but it's really easy. I don't have a grain grinder or nut grinder, so I have to use my blender. I'm sure it's even easier with a grinder!

Making Chickpea (garbanzo bean) flour:

Wild Flowers in my yard

The first thing you should know is that I live in a desert. So a lot of the typical flowers don't grow here naturally. Which means that the flowers that do grow here give me a kind of thrill, usually. They're just so lovely, and fleeting even more than flowers often are. So, here's some of the flowers that grow in my yard with no effort from me.

Optimism

I'm a fan of optimism, although I often think it's not a trait I possess in abundance. I'm more of a natural pessimist. Or maybe it's simply that I have a different flavor of optimism. I'm only optimistic if it can kick me in the pants. So, I'm pessimistic about my optimism.

Case in point: eating soup today.

Green Chile Sweet Potatoes

There are some new sweet potatoes at the Whole Foods this last week. I'm really not sure what they are, as the store just called them 'japanese sweet potato.' However, they have dark pink skins and white insides, which is unlike any japanese sweet potato I've seen - I usually see ones listed that way with red insides. I did a bit of digging (okay, I went to this one site) and it turns out these were Murasaki sweet potatoes.

These are awesome. Mild sweetness, lacks some of that dark, earthy kind of sweet flavor that you find in redder sweet potatoes, and which I rather dislike. So these were good.

But the kids hate 'em. So I started looking around my fridge and thought: I've got green chile and sweet potato - would that go together, maybe?

Stuffed Bell Pepper

This comes from yet another failed recipe, LOL.

So far, soaked, raw beans that I freeze and thaw later do not do well in my falafel recipes. I wasn't certain this was the case, but the last disaster has left little doubt in my mind. But unfortunately, that left me with nothing to do with my just-now-made bean and cucumber falafel dough (Don't judge. I was out of veggies to use!).

I baked it in a loaf pan, instead but it was...not good. Tasted like dry crumbs, although the fact that it did taste like crumbs has given me possibilities for its use in other things.

So today, I'm using my crumbs.

Food Education and Gardens

I find it hard to be positive about food education. I don't know why. I suppose it's because I want to be about awesome food that we can eat and make and far too often it ends up as 'another food we can't eat or make because the food industry or farming industry has done something bizarro with it.'

That's kind of depressing.

So I'm trying to, well, think about the good things about making my own food, instead. I like to garden. I'm bad at it, but I like it. I do it differently than most, but I still like it.

NYR

You know, I had all these lovely posts on how the New Year Resolution was going and realized something: wow are they incredibly boring. Just, incredibly. I'm erasing them and doing this once a month or so, jeesh!

So...homeschooling could be doing better, eating is doing pretty well, but had a couple backslides where I ate something with sulfites, and writing is coming apace. The house could be better, too, but it's still tolerable.

Although today is a depressing day. I reacted, and I don't know to what. Seriously, it would have to be something I touched and touched my hands to my mouth without thinking - maybe the library book? Seriously, it's so ridiculous sometimes how sensitive my body can be. When you don't even know what set you off, but you know it's a gluten reaction, very depressing.

Now it's day two with vertigo so bad that I'm nauseated all day long AND I can't drive safely. And today was the day for our fieldtrip so I had to cancel.

I hate this, when my own physical crap is ruining something for the kids. Makes me want to cry, honestly it does.

I'll have to do something extra cool with them in a few days when I can drive again.

Cooking like Calvin - Butternut Squash Soup

I love the comic Calvin and Hobbes, and especially the ones where Calvin and his friend tiger played 'Calvin Ball.' The game where the rules change constantly and crazily and it always looked like a blast.

My children and I now have a saying. 'Let's do it Calvin Ball style.' That's when we're playing a game of any kind that's gotten a bit stale, and suddenly you can just start making up the rules as you go. The only rule to making up rules is that you can't contradict another person's rules, you simply have to go with them and add more. And everyone has to have fun.

It occurred to me today that I cook the same way. These days, I cook 'Calvin Ball style.' Calvin Ball cooking is where the ingredients are always changing, but you have to try and have fun. I rarely find a recipe that I can use; usually more than half the ingredients are no-go. So we use a few ideas and then get to use whatever was in season and I happen to have at home. And try to have fun with it.

Finding yourself again

This is the year of change. The year of 'more' change 'again,' anyway. We dropped gluten when were were diagnosed with Celiac Disease, and then more foods when we had more food allergies. And then I had to alter where I went when sulfites were added to the mix.

Now there's more.

Soapnuts, or no shampoo, part 2

After using only baking soda and vinegar for a few months as my hair cleaning regimen, I was starting to have problems with my hair care. There was a slow build up of oil in my hair that I could eliminate, but to do so, it was seriously drying out my scalp and hair with the amount of baking soda I had to use.

Unpleasant.

It didn't work well at all with my teenage daughter, either, who produces a lot more oil in general, and has exceedingly thick hair that was difficult to penetrate with the baking soda mixture.

So, I went on another researching binge and I found something that works well. My daughter and I have been using this since November and it is AWESOME.

Soapnuts.