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Scheherazade in Blue Jeans
freelance alchemist
Me and Food. 
1st-Sep-2011 10:26 am
(Rabbit rabbit!)

Obviously, considering the glutening, food is very much on my mind this week.

Here is some backstory: I have celiac disease. This is not an allergy, it is an autoimmune disorder - but it's the only autoimmune disorder so far that has an identifiable trigger. That trigger is gliadin, a protein found in gluten, which is found in wheat, barley, rye, spelt, kamut, et cetera. As long as I avoid gluten, I don't have the full-body pain and sledgehammer of fatigue, GI distress, and even more et cetera.

That's really hard to do outside of my own home, and it can be intensely frustrating. As we have seen with this weekend's Olive Garden adventure, even restaurants that have a gluten-free menu can be clueless - I'm pretty sure what happened is that the grilled chicken for my GF pasta was cross-contaminated on the grill, that no one bothered to tell anyone in the kitchen that that's enough to poison someone.

I am triangulating the cause using the symptoms; the pain was not severe or immediate enough for me to think that the pasta itself wasn't GF. Were that so, I'd've had stabbing abdominal pains within minutes of ingestion. As it was, I got back to the hotel before symptoms hit. But keep in mind that that small bit of cross-contamination has knocked me out, fatigue and brain-fog-wise, for this entire week.

You see why I must be careful.

So I know all of this sounds really daunting. Especially when you add in the fact that I also have multiple severe food allergies (soy, shellfish) and aversions (I might be allergic to citrus? my body won't let me get it close enough to my face to tell).

But in my daily life, it isn't really.

From where I'm sitting at my dining room table, I can see my GF cabinet. Some of the GF stuff in the house lives in the main pantry - mostly canned goods, stuff that can't get leake into. Or stuff I don't use as often. My cabinet is a bit cluttered right now, but in sight I have Corn Chex (almost all Chex are certified GF), GF sandwich bread, a jar of soy-free peanut butter, tortilla chips, Bob's Red Mill bread and biscuit mixes, Sriracha sauce, and three kinds of honey because I really like honey, don't judge me. Inside I have GF pasta, including lasagna noodles - Adam makes a lasagna indistinguishable from non-GF lasagna! I have certified-GF oats, polenta, masa harina, cornmeal crumbs to use where I'd use breadcrumbs, GF/soy-free chocolate chips and other baking supplies, GF/soy-free soups (including cream of mushroom, for tuna casserole). And more, of course.

Produce is GF and soy-free. Meat in its most basic form is, but self-basting turkey have gluten, and so do most cold cuts. If it doesn't say "gluten-free", we don't buy it. Rice. I live on rice! Risottos. Stir-fried chicken and veggies over rice - sindrian has improvised seasonings to use instead of soy sauce. I live on Adam's risotto, on sindrian's colcannon and various experiments with sausage and vegetables. (Many sausage brands use gluten. We have found several that don't and are delicious.) I have a pile of cookbooks that makes the men go "ooooh".

You can eat really well without gluten. Or soy. Or shellfish.

I have a dedicated GF colander and cutting board. And there are pots I don't use because they're scratched; you can never really de-gluten anything scratched, is why I got the new glass cutting board. I have my own toaster and bread machine.

So when I'm home, I eat very well and very easily. It's not a matter of desperately searching for an option. I have a ton of options right here. Most of the stuff in our fridge is GF by default, because why not buy the GF item instead of the otherwise-identical non-GF item? And the things that aren't, I don't even notice; they're not there to me. My celiac disease is not a daily problem.

Unless I've been glutened.

The FDA has yet to establish a standard that a product has to meet to be considered gluten-free. The standard in Europe is 20 parts per million. Yes, per million. Your bread crumbs can contaminate my dinner, I promise. Which is why I always bring my own food to parties, because I know you want to cook for me, but... did you check the label on that barbecue sauce? Have there been hamburger buns on that grill? There are a dozen things you've probably never thought of.

And this doesn't go for everyone - sindrian was a fast learner, grntserendipity does hardcore research, taura_g know that most oats are contaminated and bought certified-GF, and I know tamidon knows all about this. More of you, I am very certain. I will totally work with you if you really want to learn this stuff! But if you're just having a party and don't want to think about stuff, I would be thrilled to bring a lasagna. No, really. Adam and Elayna don't like lasagna, and left to my own devices, I will eat the whole lasagna, so it's special treat I only get at parties where people will help me eat the lasagna. Please I want to bring a lasagna. :)

Not quite sure why I'm rambling on about this; still a bit brainfoggy! Perhaps I'll figure it out later. :)
1st-Sep-2011 02:34 pm (UTC)
Feeding someone with celiac is also one of those situations where I think it totally makes sense to go to the store and get something pre-made.

My mom has celiac and I am totally capable of throwing down with some gluten free food (and oh yes I do check all the labels). But if it wasn't for my mom giving me the hook up on all the fiddly details, I probably wouldn't prepare it.

Celiac is srs bsns. My mom's house is gluten free except for two segregated areas (my dad has a whole other set of food/health issues and sometimes he really wants toast or whatever. And yes there are two different toasters).

Blah blah. Stuff.
1st-Sep-2011 02:37 pm (UTC)
Most store-bought GF bread is just meh until you toast it. That second toaster was maybe the best $20 we ever spent. (Adam's toaster is segregated in this little wedge of counter space between the oven and the sink, and everything is else is MINE.)

And yeah, the fiddly details are what gets you. GF pasta, great! GF sauce, great! ...wait, this chicken tastes marinated...
1st-Sep-2011 02:36 pm (UTC)
My sister found a gluten-free soy sauce - if you like the stuff and want me to ask her the brand/where she got it, I'd be happy to!

I'd also love to know what products you've tried that you like and where you got them so I can pass the list on to my sister (and buy stuff for her), if you ever feel so inclined.
1st-Sep-2011 02:38 pm (UTC)
But GF soy sauce has soy. :)

I have a lot of products I like! General category?
1st-Sep-2011 03:03 pm (UTC)
He's hasn't been officially diagnosed, but since he does so much better when things are gluten-free...a friend of mine believes her 21 month old son might have celiac disease. Doctors don't want to diagnose him yet, because he's so little...

Are there cookbooks you use and love? I want to pass the info on to her.
1st-Sep-2011 03:12 pm (UTC)
Oooh, I don't know about cooking for the wee ones as much! Cooking for Isaiah is specifically kid-friendly, and all of the crockpot recipes here are GF and kid-friendly.
1st-Sep-2011 03:03 pm (UTC)
Gluten-free sausage?

Who? When? Where? Don't taunt me! Give me brand names!!PLEEEEEEEEEEEEEEEZE!

I've not been diagnosed as celiac, but my (borderline) diabetes goes away if I cut wheat out of my diet, so I'm looking more and more at GF stuff. Mostly it's not a problem as I eat low-carb as much as possible. However things like sauces -- if I can get GF, then I don't have to make everything from scratch.

But yea, stir-fried veggies and sausage... bring it on! Especially this time of year with all those yummy farmers market veggies.
1st-Sep-2011 03:09 pm (UTC)
We get ours at Costco, BJs, and Shaw's... the brand we have in the fridge right now is Aidells, which I'm pretty sure we got from Shaw's!
1st-Sep-2011 03:17 pm (UTC)
my whole family is full of severe to mild food allergies and intolerances. my dad only eats very lean meat usually beef, chicken and fish, lettuce, rice and every rice product out there and potatoes. i remember talking to him about it once and he said compared to how things were 10 or 20 years ago he has so much variety now. there is rice milk, rice flat bread, rice cereal, rice pasta, rice spaghetti, rice crackers, rice flour and more! it developed in his early 20s and his identical twin brother developed the same condition. they've been studied by tons of doctors and they can't really diagnose anything other than severe bowel problems. then a year or two ago my sister and mum found out they were both allergic to soy, gluten, dairy, eggs and then a few other various things but they effect them differently which is strange. my sister gets a lot of the symptoms you do but my mum either gets an upset stomach or hives when my sister has never gotten hives. it was ridiculous when they started to cut out foods because you don't realize how many things have gluten or soy hiding in them! i decided i may as well get the tests and i am allergic to dairy (cow), egg white but not egg yolk, goats milk, plaice, kidney bean, peas, peppers, nutmeg, cola nut and mushrooms in severity. i cut out almost all dairy and my stomach problems improved an incredible amount but i am a bit of sucker for punishment and will still eat dairy because i crave and love it so much. in short i can totally relate to living with food problems in the house as i have grown up my entire life with it. i remember once being at my friend's house and i was like WOAH WHY IS YOUR DAD EATING THAT?! because my dad always had separate food from us haha

well that was a ramble but it really is hard when people don't understand how much pain/suffering/long lasting effects having something your body is allergic or intolerant to and i wish more people were aware of how serious it can be. also i don't know if you bake much but i found THE most incredible all allergy free baking book my sister fell in love and has cooked so many things from it! i can dig up the amazon link if you want

Edited at 2011-09-01 03:19 pm (UTC)
1st-Sep-2011 03:19 pm (UTC)
I wanna learn, I wanna learn!

oh wait, but first:
"but it's the only autoimmune disorder so far that has an identifiable trigger.

Actually, there's a whole school of thought that says most autoimmune issues are triggered or at least aggravated by gluten, (and additionally, aggravated by grains & legumes in general). I had a rheumatoid arthritis patient go gluten & sugar free after I suggested it (and dear god, I meant her to go off one at a TIME, not both at once), and the RA got so much better so fast that her rheumatologist was left with her mouth hanging open. (Then the rheumy got excited and started talking about a major stufy in europe which implicated gluten in RA and then started talking about taking her off the immunosuppressant drugs.)

OH, and I just DL'd a book called Wheat Belly, about the history of wheat and it's screwing ALLLLLL of us up (some of us more than others). Here's a book review I was linked to yesterday:

BUT, back to my main point, which is I wanna learn anything about this you can throw at me. (If you used the gluten/celiac tag on your LJ more often, I'd probably go through reading like a nutbar stalker. As is, going to check out your tip post.) My kitchen isn't gluten free, and hell, I'm only about 98% GF so far, but hot damn do I feel better when avoiding the stuff. (And other grains too. I had a sodabread made from a gluten free mix the other day by a friend that left me feeling kind of ick. And I don't think a mild cross contamination should be a problem at this point as I'm still eating hidden glutens. Just taking this all one step at a time.)

Also, I <3 lasagna. Though NYC is sort of far to bring a lasagna. :)
1st-Sep-2011 04:08 pm (UTC) - *sigh*
Thank you for the link to the book review. It makes me want to buy the book for myself, and also for everyone else in my family. My parents have now both been diagnosed with diabetes, my sister had gestational diabetes, my father, sister and myself have excema as an allergic reaction to certain foods, and when my sister started cutting out gluten, she was able to eat those foods with almost no more excema.

I don't like change, and I already keep kosher, and the thought of adjusting my diet to start cutting out gluten seems like an undertaking... but one that will have a lot of benefits. Stupid science, letting me know how to live better yet not letting me know how to sharpen and harden my willpower...
1st-Sep-2011 03:39 pm (UTC)
Huh, I'm wondering now about home sausage-making, as I've got that attachment for my KitchenAid.
1st-Sep-2011 08:58 pm (UTC)
My mother-in-law (lives in a developing country) says making your own sausage is easy, cheap, and delish. She uses a clamp-on meat grinder and a spoon to stuff the casings, which she buys from her butcher. She also puts whatever she wants in her mix. I think the latest "thing" she's doing is flying back from the US with a smuggled bag of Granny Smith apples and putting those into the sausage. (Apples are an expensive import in her country.)

She makes an amazing lamb sausage. The rest of the family is still talking about it, years later.
1st-Sep-2011 03:39 pm (UTC)
Your comments about how trace amounts of cross-contamination can make you ill made me think about how people often don't believe that my wife can be as sensitive to meat contamination as she is. She's been vegetarian for ~20 years now, and we think she's just lost the ability to cope with land-based meat somehow. Grills that are insufficiently hot to melt/burn off the meat oils and fats can contaminate her food and make her a Very Sad Doobie for a couple of days. The one time I've seen her have really serious meat poisoning was a time when very well-meaning friends accidentally fed her soup made with chicken broth; we were actually afraid it was some sort of infectious food poisoning, like salmonella, but she had none of the symptoms of a bacterial or viral infection, just the GI stuff.

Anyway. I'm sorry eating out is such a not-fun adventure for you most of the time.
1st-Sep-2011 04:02 pm (UTC)
Oof, I'm also a longtime vegetarian and I've had the stealth-meat problem myself. Only with mammal flesh, thankfully. But yeah, 24 hours of intestinal distress from one accidental bite of meat is Not Fun. :-/
1st-Sep-2011 03:50 pm (UTC)
Huh, did not know that gliadin had been identified as the culprit. I wonder if there's anything that would block the antibodies to it, preventing the problem.

Alternatively, I wonder if it would be possible to tweak the genes of a wheat strain so it's version of gliadin doesn't provoke a reaction. GF-wheat basically.

There's a potential biohack for me to think about doing if I ever my little lab up and running. [even DIY labs are expensive!]
1st-Sep-2011 04:25 pm (UTC)
Looks like some are looking at it.

See Novel Therapeutic Options
1st-Sep-2011 04:02 pm (UTC)
You should know that in anticipation of your visit, I am leaving many of the nice presents in their wrappings (cutting boards mostly) so that we do not kill you! I don't actually own a colander yet, and typically drain pasta with the lid over the pot. Other than pasta (and I haven't really cooked much pasta in mbarr's pots yet), most of the apartment's pots cook mostly GF food (they are the meat pots, and I don't make anything with a roux for meat as margarine doesn't make a very nice roux).

When you come, we will commiserate over food issues while traveling.
6th-Sep-2011 03:33 pm (UTC)
You are awesome!
1st-Sep-2011 04:42 pm (UTC)
Oh, this is wonderful! I had severe allergies very young; I was allergic to wheat and eggs, my sister to milk and eggs and this was back when there were *no* alternatives or substitutes or Health Food Stores. How my mother cooked, I have NO idea. I think it was gluten I was allergic to, but of course, way back then, they didn't know this stuff.

The thing that slays me is people who still persist in thinking that people with such problems are just making it up or being difficult or using it as a bid for attention. And there are lots of people out there who think that. My ex did until he had to hold my hair while I was throwing my guts up after one bite of home-grown-and-caught catfish from his mother's pond. And from eating one bite of the sauce from his oriental seafood with tomato sauce dish at a restaurant (this was while I was still figuring out what exactly I was allergic to...the hard way.)

Sorry that rambled so much but I have a GOOD source for sausage for you. http://www.aidells.com/allergen
I am hopefully about to go to work for these people part time, doing food demos in grocery stores.

I look forward to reading more about this, thank you.
1st-Sep-2011 09:42 pm (UTC)
The thing that slays me is people who still persist in thinking that people with such problems are just making it up or being difficult or using it as a bid for attention. THIS.

I have a dairy-sensitivity, as I put it. I'm not quite lactose-intolerant, I'm not quite caesin-intolerant either. I fall somewhere in the middle of the scale. And really, depending on what else I've eaten in a day, how stressed I am, and what else is involved in the food all determines how badly I react to it. Headaches severe enough to be crippling. Extreme nausea and brainfog, oh, yes.

Except my stepmother still doesn't believe me, given, as she puts it, "I don't get the "normal" symptoms" of lactose-intolerant - stomach cramps, bowel movements, etc.

So, yeah. I've taken to sneaking lactaid pills whenever I visit, and making sure I've eaten extra protein and carbs beforehand. At least then, I'll sometimes balance out. Never know. I'll be fine with something one day, and the next I'm dizzy to the point of passing out. Fun, let me tell you.

But yeah. Rambling.

Funny enough, my doctor's tested me for celiac three times now, all have come back negative.

Edited at 2011-09-01 09:43 pm (UTC)
1st-Sep-2011 05:06 pm (UTC)
I was stupid happy to find out I don't have Celiac but I am still put out that I have "sensitivities" to gluten and dairy which are made worse by stress. Stress also makes it hard for me to digest red meat at times. Many doctors have theorized that if I eliminate stress I will have an easier time eating more things and getting nutrition from them (my endoscopy corroborated this) so what it means is that people see me eat dairy and gluten at parties (cause I skip parties when stressed) and home I eat fish, chicken, rice, veggies as 90% of my diet. When life is too stressy I go fully HR for days or weeks. (And I bring HR treats to most parties since I have a HR cookware set). All of which is to say I sympathize cause it sucks. I feel tired, acute, nauseous, and brain-foggy for hours post gluten if my body wasn't up to it, and being Diabetic I still have to eat SOMETHING despite lack of desire. (This is my issue lately: almost no appetite with occasional spikes of starving, and sick after most meals. It sucks and having coworkers and not-close friends ask "are you sure you want to eat that?" All the time lately is annoying. Yes I want toast now. Yes I want jam now even though I didn't yesterday. Your mom/dad/sis/dog is diabetic so you KNOW what my body needs even though you have never seen my medical file, spoken to my doc (who incidentally told me to eat sugar), or been trained as an endocrine nutritionist? Then please STFU and let me eat the only thing I can force down right now. Thanks. (Sorry for the rant but I am losing my mind from unsolicited advice).
1st-Sep-2011 05:20 pm (UTC)
Er... HR = GF (stupid auto-correct and typing as I wander looking for a lunch I can get down)
1st-Sep-2011 05:18 pm (UTC)
That GF lasagna, by the way? Fabulous. I will help you eat that any time, and I highly recommend it to any lasagna-eaters reading this. (Take it from a very fortunate omnivore who has no major food allergies or sensitivities; it's good stuff.)
1st-Sep-2011 05:48 pm (UTC)
Thank you for posting this. I'd read your other posts about celiac and GF, but making details that specific really hits home. (It made perfect sense to me, too, as sometimes I have to spell out to people the long list of onerous preparations and contingencies I have to go through to, for example, go to a nightclub or try a new supplement.)
(Deleted comment)
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