What I eat

I am trying to put this up periodically, in large part as a reminder to myself, for when I'm feeling down about my diet, or to remind me how far I've come. Because folks with MCAD so often have very, very limited diets that I am doing REALLY well, and I want to hold on to that for the days when I'm feeling down...like right now when I need to lose a bit of weight and have to diet, ouch.

So, reminder to self!
Two weeks after going gluten free, I was reacting to so much that my diet of 'what I can eat without reacting' dropped down to:
Bison meat, carrots, sweet potatoes, quinoa, avocado, and salt.

Within a few months, I tried and discarded a few more items and was able to add amaranth, too. I don't think it was really any improvement, considering how little I liked the texture of amaranth.

And what I can eat now (without an unpleasant reaction):

Cooking in someone else's shoes

Fried kinda-green tomatoes...which I can no longer have. Waah.

I go through phases in my cooking. I get stuck in a rut - a huge rut where we have the same items for lunch and dinner, in different forms, for a week because I can't make my brain think of anything else. And then I get sick of that and start trying out some new foods, some of which actually work. After that, what else can I do but go look at other people's recipes and food blogs in a quest for more delicious new foods? I'm inspired and excited for a few days to a couple weeks.

And then?

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.

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.

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.

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.

Why what we say matters.

I constantly share information about Celiac Disease.

I know this annoys some people. My friends are likely nodding their heads and saying, 'yes, Shauna, please do shut up about this sometime soon, eh?' I can appreciate that. I know have a bit of an obsessive personality at times. It comes out with anything new in my life, like the three tiny goldfish that turned into a 10 gallon tank, a 20 gallon tank, a 60 gallon tank, and explorations into fish breeding, live plants, and attempts at mimicking a complete ecological environment.

Like I said, just a teensy bit obsessive. Although my fish tanks were awesome, if I do say so myself.

But with Celiac Disease, it's not always obsession driving me to talk about it. Deep down, this is grief and anger. I talk about cooking and the food industry because I have to think about it all the time. But Celiac Disease is more than that.

Surprised

Yesterday, a friend mentioned that she'd been sick lately. A nasty flu going around. And she mentioned that it was a surprise how long she'd taken to recover, because she's never sick. She's healthy so much that she never expects to get sick.

I hadn't until that moment realized that I'm the complete opposite.

Judging Others

With all the food issues that my family has to deal with now, we've run into various reactions from others. Some people are curious, some are sympathetic, some are annoyed, and some are downright antagonistic, which truly, I just don't get. I've had people look at our food and start rolling their eyes, or making snide comments about us in a perfectly audible undertone. Seriously, why do they even care what we eat?

And besides, it's an instant judgement based on a mere sliver of information. When that type of judgement is enough to make someone say or do something negative to another person? Not cool.

While I'd love to sit on my high horse and say I would never, ever make this type of judgement about someone else, I can't. If I tried, my high horse would buck me off into the muck filled with times I have made a judgement like that, without even thinking. I've formed opinions about a person because they have the same religion as someone I know who is rude and thoughtless. Or made judgements about someone because they are in the same tax bracket as an ex-roommate of mine. I know I have done this.

I try not to, and I'm definitely not proud of it, but I know it's happened. However, I have one memory that keeps me from going too far down that road of judging precipitously and acting on it. This memory reminds me that you never know what's truly going on with someone else.

How to succeed in your diet

When our reactions are life-threatening, it's very motivating to stay on the diet. But what about reactions that aren't life threatening? The ones where you feel like crap, but only for a day or two. Or those reactions that build up over a week or two, where your RA gets worse, your FM gets worse, you get more tired and feel terrible until you finally go back to eating like your should.

In the beginning, those can be much harder to stick to, especially when we're tossed in the deep end of allergen-free cooking and it's drowning us. We have to rely on our support and our own will, and sometimes that's just barely enough. 

Or it isn't enough. I still drown periodically, eating something I shouldn't, getting sick, and smacking myself in the head that I let myself be such an idiot. But, when I'm completely on track, here's some of the things that have helped me stay on track.

Cooking without Tasting

If you come to visit my house, something you will hear almost daily is "Here, taste this. How is it? What does it need?"

More chiles? Of course it needs more chiles!

Now, this could be seen as some attempt at creating child chef prodigies, but in reality, it's because I can't eat many of the foods that my family can. If the meal has meats from the regular store, beans if I'm close to my sulfite load, veggies and fruits from the store, eggs, garlic - there is a whole host of foods I can't eat that one or both of my kids can. There's even more that my hubby can, not having gluten issues like the rest of us.

Food success and failure, all in one

Today I decided to try to make veggie burgers for the first time.

I've been making Pecan Milk for my son, where you soak pecans for a day or two in about 4 times as much water, then blend it until smooth in a blender.

Soaking pecans look rather nasty, don't they?

A day in the life

I want to remember what this is like, right now, this one point in my life.

Today, my husband has to study for school and I need to write. He needs to get away from the distractions at home and as for me...I need to stay safe.

Days of Real Food

I just found a blog called 100 days of real food. It was a lovely idea - a family was going to try to eat only whole foods, nothing processed, for 100 days. Then they tried it again on a budget.

It was a really neat idea, but I wasn't sure how much it would relate to us, mostly because our own diet has become so extreme. Their criteria for what made up unprocessed food was broader than I'm allowed in my own diet, so the question was, would they have foods I could eat, on their diet?

Home again, home again

About a year ago, my Super Geek (aka hubby) got a new job that was in another state. We had a long discussion about it, but in the end, we decided that he should take it. It's a good job, great people to work with, and the pay is good. But we're still a state away from him.

However, we're also homeschooling, so we can be a bit more flexible until we have the house all fixed up and ready to try and rent it...or something. So every few weeks, I pack up the kids and the car and we head out to spend a week or two with Daddy.

Learning to Wait

There's something to be said for learning to wait for things.

Not that I'm not as impatient as the next person sometimes, but I've been gaining an even greater appreciation of waiting. Gardening has played a big part in that.

Starting from Scratch - literally

The me of 10 years ago: mom of one and a self-taught mediocre cook of traditional American fair with a Mexican, Asian, or Indian meal thrown in here and there.

The me of 9 years ago: mom of two, still a mediocre cook, but one who had to find brand new recipes for all my traditional American, Mexican, Asian, or Indian meals so that they didn't include anything with dairy, for baby #2. Asian food became much more of a staple.

The me of now: mom of two, still working on that cooking, but now have a number of new foods to avoid, so it's back to the drawing board for the recipes again. Or in other words...I'm really, really tired. ;-D

Which brings me to this blog. I hope to keep track of what recipes I've come up with, at this point. Some may be good, some may be really bad (Trust, some will be. I have no doubts on this score), but I'm learning as I go.

The challenge is avoiding all the foods I or my children can't have. We only have a few food issues, but they're with ingredients that are in nearly all processed food, and we're sensitive enough to have trouble with ingredients derived from these foods or contaminated from these foods, too. Gluten, corn, dairy, eggs, soy, sugarcane - all on the No list. Plus a few others.

I used to think cooking from scratch meant I didn't use a mix. I've adjusted that waaaay down. I've got an olive oil and a sea salt as my two processed foods. Anything else? Well, for the moment I get to make it, whether it's vinegar or tomato paste.

So this blog is the blog of cooking from scratch, from the perspective of someone who is having to learn how to cook, for the third time in a row. A bit nerve wracking, honestly. I didn't learn it all that well the first two times!

But, well, third time's the charm, right?